Differently Abled (fly your freak flag high)

[SuperFemme]

I am differently abled. I have a head injury and damned cancer.

The things that led me to my parking placard are gifts rather than curses.

How do you find the gift in what others find a curse?

[Words]

My daughter, who is differently abled (I love that expression by the way and am going to adopt it forthwith; 'disabled' sounds so negative), still believes in Santa (she's now 22). Because she believes in Santa, I get to believe in him too;)

[SuperFemme]

I love Santa. I love that my brain is like swiss cheese; some parts are fantastics other parts are just holes of nothing. I love feeling like I am having new experiences all the time, even if it's for the 50th time.

I don't mind when people don't understand me because I see it as a chance to educate.

Words, your daughter is so blessed to have such a fantastic Mommy. :o

[Random]

I get to entertain my family...

They love trying to play *Guess what word mom/honey is trying to say*?

They really do chuckle when I start at the word TOASTER and work my way through every applience until I get to the one that I am talking about..

[Words]

Thank you, that was sweet of you. I feel the same way about your kids.:)

Re. the Swiss cheese analogy, I definitely hear you on that one. My daughter can't read or write, nor would she be able tell you our phone number, yet she would be able to remind you of something you needed to do a month or so after your asking her to remind you and, since she taught herself to tell the time, - the professionals didn't think she'd be able to learn - at the time you'd asked her to remind you. Unfortunately, though, she is often judged by others, especially those meeting her for the first time, on what she can't do, not what she can do.

A classic example. We went to visit a new therapist because of her behavioural problems. As is usual with professionals she's never met before, she was doing the poor helpless me routine, sitting there in silence, eyes to the ground, refusing to interact at all. Result? The therapist stopped addressing her directly and started talking about her, rather than to her. Eventually, he asked some really stupid question, the mere asking of which implied to me - and clearly, to my daughter as well - that he'd obviously written her off as being way less able than she actually is. At which point, in true unpredictable fashion, she turned to B/both of U/us and asked, ''What the fuck kind of questions are these?'' (hey, she has a 17-year-old potty mouth brother), thereby voicing what W/we were wondering O/ourselves. Not that I condone her swearing, but boy, did she teach that therapist a lesson in not judging a book by its cover.

Anyway, enough of my daughter:)

Best,

Words

[SuperFemme]

Your daughter is a HERO. Kudos!

[Bit]

Being different rules my life, although I fought against that for decades.... but yes, I too have chronic illnesses that have changed what I am able to do.

I think the thing which surprises me the most is that having fibromyalgia evidently messes with your brain in the same way that taking some drugs does... I needed no drugs to "open up" my psychic abilities... but I have to say, if my ardent childhood desire to be psychic is responsible for my getting fibro, well, THAT took a nasty turn! *horrified laugh*

[SuperFemme]

I get to entertain my family...

They love trying to play *Guess what word mom/honey is trying to say*?

They really do chuckle when I start at the word TOASTER and work my way through every applience until I get to the one that I am talking about..

While my family is playing this same game, I am playing the "Hmm, I wonder what she said? I'm pretty sure it's not pass the smashing pumpkins." :chainsaw:

[SuperFemme]

Being different rules my life, although I fought against that for decades.... but yes, I too have chronic illnesses that have changed what I am able to do.

I think the thing which surprises me the most is that having fibromyalgia evidently messes with your brain in the same way that taking some drugs does... I needed no drugs to "open up" my psychic abilities... but I have to say, if my ardent childhood desire to be psychic is responsible for my getting fibro, well, THAT took a nasty turn! *horrified laugh*


Interesting Bit. Very interesting. I wonder is being differenlty abled allows us to connect to others in a simpler more empathic way.

[Random]

While my family is playing this same game, I am playing the "Hmm, I wonder what she said? I'm pretty sure it's not pass the smashing pumpkins." :chainsaw:

That one is cute... I need to write down some of the things that I think people say...

It is highly amusing to watch their face when you repeat back what you think you heard them say...

It's sort of..

BLINK... *where the hell did you get that?*

[atomiczombie]

*raises his hand*

I have a whole long list of labels for what is "different" about me. A.D.D., alcoholic-addict (recovering 23 years), bipolar, panic disorder, learning disability (spacial relationships- somehow that messes up my ability with math), clinical depression, agoraphobia, facial and body tics (no, not ticks!) germ-phobia, yak yak yak....

Yeah, I'm special. ;)

*hug* for all my fellow freaks. :D

[I'mOneToo]

As one who is still struggling to find the gift inside the curse, I say sincerely, "good for you" - that you have found it. That is the gift itself it seems.

*will keep searching*


I am differently abled. I have a head injury and damned cancer.

The things that led me to my parking placard are gifts rather than curses.

How do you find the gift in what others find a curse?

[Semantics]

Good thread, SuperFemme. :)

Words- it sounds like your daughter has many strengths and good for her for not letting that therapist dismiss her.


I live with four differently abled children. They all have Asperger's Syndrome, which is an an autism spectrum disorder that affects social interaction. They also all have Sensory Integration Disorder.

The oldest at 16 has it most severely. He isn't very verbal and makes very little eye contact. Despite having a high IQ, getting a 2200 on his SAT's, and acing college level courses like physics and calculus, he can't do simple social tasks like make a phone call or order food in a restaurant.

My 11 year old has a mild case, although he has the most trouble in school because he's very loud and annoys his peers and teachers. One issue with Asperger's is the inability to comprehend appropriate voice modulation.

I also have six year old twin girls, one has a mild case and the other is more severe. One of the twins has a lot of health issues due to her Sensory Integration Disorder because she has such strong texture and taste aversions. Her oral defensiveness has made feeding very difficult. She is small for her age and I have to bring her to the Children's hospital every other week for IV fluids and an iron infusion.

The combined occupational, feeding, speech and language, physical, and social skills therapies for my children add up to many hours per week.

They're different, they're quirky, but they're mine and I love them. :awww:

[Semantics]

How do you find the gift in what others find a curse?


Every other week I spend all say at the Children's hospital in the oncology/ hematology ward with my six year old while she has her iron infusion. It's a slow drip and takes about 6 hours.

She's usually the only one with hair because all of the other children are there getting chemotherapy.

My kid may never get jokes. She may never stop toe-walking. She may have to wear peltor ear protectors to the movies into adulthood because she's terrified of loud sounds. She may grow up to work in a cubicle.

But she will grow up.

[WILDCAT]

Wonderful and thoughtful thread, SuperFemme!

After my injury, where/when my life was altered... I did realize the "gift" of/from it. It took A LONG time though, and I was quite ill for awhile.

One good thing, I had been at odds with my parents my whole growing up life for being queer and quite feisty about it! Once that accident happened, that all came to a screeching halt, from them. I was "alive". That was all that mattered to them!

Then, from that happening I was able to come back into this area and "be there" for my parents once they got up in years. We have long since become best friends. They became winter snowbirders for several years, (post retirement), and I was able to help them get to and from Arizona.

Imagine being able to say that you had the experience of going across country many times with your parents? (Well, might be normal for some, but I would have never guessed that!) And they were so grateful for the help. To me, that is a beautiful part of our "journey" together...

And Bit (MDC here) I did have a spiritual component [post injury] that happened to me. I am definitely what is known as a "sensitive". Many have experienced similar things from my type of injury, which was closed head (well, and spinal injury as well). If I told some folks some of these things, they simply would not believe me - or just be plain spooked! LOL!!

But, just being sensitive in general is a very wonderful thing. I've mostly done hospice volunteering (to "give back"), and I love it - difficult as it may seem. I feel like I was meant to be there/here in this capacity for folks. I am very strong this way (normally, I do have my exceptions). And it's been mostly friend's of who I grew up with, their parents and family members that I have tried to help out, be there for and with. It's like I took my world experience working and getting hurt then, and brought it home - to be able to share. :)

OK, enough for now!

PEACE AND LOVE TO ALL!

Wild

*Oh, I will say, that "my injury" expedited things such as OCD, being a reclusive, etc... I really haven't looked at that as being "differently abled", although I know it is. (I just haven't made a full direct connection to myself that way.) Some was "pre-morbid", I know. So, I have kept them separate, mostly. But, they are interconnected... and disabling. I have to constantly fight this.

[SuperFemme]

Thanks Jude! I'm wondering about the common theme of reclusiveness amongst us...

I cannot take large doses of people at a time. I lost the two of my five senses and cannot smell or taste. I have the hearing of a bat.

I get overwhelmed so easily now, and focused attention is difficult as is divided attention.

[atomiczombie]

Thanks Jude! I'm wondering about the common theme of reclusiveness amongst us...

I cannot take large doses of people at a time. I lost the two of my five senses and cannot smell or taste. I have the hearing of a bat.

I get overwhelmed so easily now, and focused attention is difficult as is divided attention.


I can't stand loud noises, like being in a club or bar with LOUD music blaring. It makes my brain melt down. I don't like big crowds either. I feel overwhelmed and then I get anxious, then the tics show up, then the stammering and stuttering (did I mention that one earlier?). If it gets too bad, I end up running home and crying alone. :(

Wait, how is this a blessing?

[WILDCAT]

Thanks Jude! I'm wondering about the common theme of reclusiveness amongst us...

I cannot take large doses of people at a time. I lost the two of my five senses and cannot smell or taste. I have the hearing of a bat.

I get overwhelmed so easily now, and focused attention is difficult as is divided attention.


I find it harder and harder to get out among "people". Large groups! AUGHHHH!!!!!!! Shopping at Wal-Mart?!!!!!!! NO!!!!!!!!! Company here at home, no - not right now, please. (Although I am grateful for whoever might care, I simply do not/cannot ask for help anyway.)

I like my attention right now to be for the few I REALLY, really care about, and that is FINE with/by me! That's what I got! I simply do the best I can Super. And, I am going to be in control the best I can, by my choices - when/while I have that choice. (i.e. Why would I invite an anyone into my home when I'm not comfortable with it, or I'm not comfortable with them right now, OR... why would I go anywhere where I don't feel comfortable?) Immediate family is where I am at! And that is a stretch at times, what consitutes "family" for me. Honestly.

Our world does become smaller in a sense. But, I was wondering lately, IF the internet is more of a liability for me, or as asset (?) QUEER-WISE, it is a good thing probably - for where I live, isolated from ANY "sense" of the word/world community, as it applies to me.

I don't want to become too complacent with that however, but... I LIKE IT. (I'm also grateful that I traveled A LOT at one time, but honestly, I am missing that right now. Bereaving, for my gypsy blood...) On one hand it's good that I am fine with being alone... on another " I am a lover, nester, family person", etc... sometimes I feel like I am walking a thin line here. I have always said, that "if I jump off the path now and then throughout life, FINE! AS LONG AS I CAN SEE THE PATH, I will be OK - if and when I need to get back on. Well, right this second I'm wondering... do I really still see that path? Or am I just remembering that I had this "philosophy" (about "visualizing a path)? Hmmmmm... (?)

I am really sorry to hear about your "loss of senses". That REALLY SUCKS!!
___

I have another point I want to bring to this topic, but it's not fitting quite right here and now I don't think.

HUGS,
ME

[FeminineAllure]

I am Differently Abled as well.
I have Bipolar and Fibromyalgia to name a few challanges. I just try to never give up on myself and find things that keep me motivated and going. Basically giving to others in many ways.
I am an advocate, proactive, love to volunteer especially with Differently Abled cats who have Feline Lukemia and/or AIDS. or special needs.
I use every opportunity I can to educate people on the myths and the truths of mental illness. It is amazing to me the misconceptions some people have regaurding Bipolar.

Flying my freak flag high:sparklyheart:

[SuperFemme]

Every other week I spend all say at the Children's hospital in the oncology/ hematology ward with my six year old while she has her iron infusion. It's a slow drip and takes about 6 hours.

She's usually the only one with hair because all of the other children are there getting chemotherapy.

My kid may never get jokes. She may never stop toe-walking. She may have to wear peltor ear protectors to the movies into adulthood because she's terrified of loud sounds. She may grow up to work in a cubicle.

But she will grow up.

Semantics, you are one HELLUVA parent...I've sat in the oncology ward getting chemo and my absolute favorite people are the children. They are so honest and open it moves me to tears. I am humbled every time.

What are peltor ear protectors? I literally had a helmet for some months as a piece of my skull was left off due to swelling. I woke from a coma paralyzed on my right side and suffered from seizures almost every day.

Today, when I get stressed I have focal seizures which my beloved can always sense coming on, and if they progress into a grand-mal hy holds me and whispers me through it. Of course I come to and deny it happened. Ha!

The understanding and support of even ONE person can change the course of a different-ability IMHO.

[SuperFemme]

I can't stand loud noises, like being in a club or bar with LOUD music blaring. It makes my brain melt down. I don't like big crowds either. I feel overwhelmed and then I get anxious, then the tics show up, then the stammering and stuttering (did I mention that one earlier?). If it gets too bad, I end up running home and crying alone. :(

Wait, how is this a blessing?

Maybe it's a blessing in that you understand your own limitations and have superb compensation strategies in place to keep a bad situation from going to worse?

Drew, I remember a night in Dallas spent turning tears into laughter? Remember that? I knew you were a special soul after that night. I can tell you this: people care about you. A lot. Not in spite of, but because of the whole package. ((((Drew)))

[SuperFemme]

I am Differently Abled as well.
I have Bipolar and Fibromyalgia to name a few challanges. I just try to never give up on myself and find things that keep me motivated and going. Basically giving to others in many ways.
I am an advocate, proactive, love to volunteer especially with Differently Abled cats who have Feline Lukemia and/or AIDS. or special needs.
I use every opportunity I can to educate people on the myths and the truths of mental illness. It is amazing to me the misconceptions some people have regaurding Bipolar.

Flying my freak flag high:sparklyheart:
I love your whole post and can see many blessings in you rather than a curse. :rolleyes:

[SuperFemme]

I find it harder and harder to get out among "people". Large groups! AUGHHHH!!!!!!! Shopping at Wal-Mart?!!!!!!! NO!!!!!!!!! Company here at home, no - not right now, please. (Although I am grateful for whoever might care, I simply do not/cannot ask for help anyway.)

I like my attention right now to be for the few I REALLY, really care about, and that is FINE with/by me! That's what I got! I simply do the best I can Super. And, I am going to be in control the best I can, by my choices - when/while I have that choice. (i.e. Why would I invite an anyone into my home when I'm not comfortable with it, or I'm not comfortable with them right now, OR... why would I go anywhere where I don't feel comfortable?) Immediate family is where I am at! And that is a stretch at times, what consitutes "family" for me. Honestly.

Our world does become smaller in a sense. But, I was wondering lately, IF the internet is more of a liability for me, or as asset (?) QUEER-WISE, it is a good thing probably - for where I live, isolated from ANY "sense" of the word/world community, as it applies to me.

I don't want to become too complacent with that however, but... I LIKE IT. (I'm also grateful that I traveled A LOT at one time, but honestly, I am missing that right now. Bereaving, for my gypsy blood...) On one hand it's good that I am fine with being alone... on another " I am a lover, nester, family person", etc... sometimes I feel like I am walking a thin line here. I have always said, that "if I jump off the path now and then throughout life, FINE! AS LONG AS I CAN SEE THE PATH, I will be OK - if and when I need to get back on. Well, right this second I'm wondering... do I really still see that path? Or am I just remembering that I had this "philosophy" (about "visualizing a path)? Hmmmmm... (?)

I am really sorry to hear about your "loss of senses". That REALLY SUCKS!!
___

I have another point I want to bring to this topic, but it's not fitting quite right here and now I don't think.

HUGS,
ME

Darling? Quit overthinking and bring up the point. There is no place more fitting. You are safe here.

[atomiczombie]

Maybe it's a blessing in that you understand your own limitations and have superb compensation strategies in place to keep a bad situation from going to worse?

Drew, I remember a night in Dallas spent turning tears into laughter? Remember that? I knew you were a special soul after that night. I can tell you this: people care about you. A lot. Not in spite of, but because of the whole package. ((((Drew)))

I remember a night in Dallas when you flipped your skirt up to get me to smile. (I didn't look, I swear!) It was very sweet. My head was pounding from the loud noise. You are super cool, SuperFemme. I'm gonna have to friend you on FB.

[SuperFemme]

I remember a night in Dallas when you flipped your skirt up to get me to smile. (I didn't look, I swear!) It was very sweet. My head was pounding from the loud noise. You are super cool, SuperFemme. I'm gonna have to friend you on FB.

I DID? OMG. That is so ME.

Yes please friend me on FB. Adele S-g will take you right to me. :welcome:

[WILDCAT]

I'll get on with my other point here.

Since the phrase "freak flag" is in the topic title and was also just posted by someone:

When I was first hurt, NO ONE knew how to take me, to take me seriously that I had indeed BEEN HURT (like when I came back home after much treatment in N.Y.C., where I lived at the time - to where I had originally been from).

Everyone KNEW me growing up as this very STRONG personality. Very capable. Not one to be messed with, actually. Now "clearly" I was NOT MYSELF for a good while after the accident. No one helped. And I know I scared them actually, as I wasn't the person they knew and grew up with - for a good long while. Ironically :confused:, one of my jobs had BEEN to work with victims of head injury, so I instinctively knew what was happening - and how folks back off and ALL!

Plus, I repeated and repeated my trauma incident, for I felt I was NOT being heard - and I could not believe I had been "assaulted" the way in which I was at the time of the accident. (Abuse victims will know what I mean by that.) I felt that no one cared. I was hurt, pissed, all of that... but, mostly felt totally "abandoned" - but, not in the "traditional" sense of the word or meaning (?)

They DID care, just didn't know how to deal... with ME.

As I got better, I talked to many about this - friends and family. I confronted some as well, who I considered close friends, and told them "how hurt I had been". Of course, they explained this all to me. I HAD ALWAYS BEEN THE STRONG ONE, THEY WERE SCARED AND CONFUSED.

NOW, as time has gone by... it's the "freak, who's NOT the same person" concept/judgment concern that is starting to bother me. Because I was honest at one time, and put it all out there. But, what if I had NOT recovered? The judgment there in these kinds of instances, can be so painful!

Most here in my area know of my past field of work. I am well respected for it. I am also like a magnet for folks to trust me and tell me anything that is going on - in a non-progressive town where folks do NOT open up and share easily. And I hold this dear to my heart and am very discreet - especially in this small town where everyone knows everyone. I am very honored one could easily say.

However, I still canNOT ask for help. I am locked into the "helping others only" concept. (NOT just for/from my years of work, but that is just not what my personality is like!) If I DO happen to ask for help though (which IS a lesson for me too, I believe) - on occasion, I feel terrible and that I "owe" folks something then, or more so, have "bothered or troubled them". (Now I have never felt that, in "helping folks"... they owe ME!) So, this is a huge problem.

It bothers me now as I get older, to think that folks judge someone... who "seemingly" has "stopped growth": BASED ON THE PERCEPTION THAT WE ARE ONLY CONSTRUCTIVE BY OUR PRESENT WORK. PLUS, and, if we were injured and/or our life was altered... and when/where I finally "wear" down once in awhile AND ask for help - again folks seem to NOT know me and are confused.

I just want to be kinda "normal". Whatever the hell that means! I know I am very different anyway though, injury or NOT! And I have been told that repeatedly throughout my life.

I'm fine being accepted as a queer here. In fact, if anyone tried to hurt me (from the outside), there would be HELL to pay for that person. We are a tight community that way. (Same thing that allows me to tell/confront/addess folks of ANY "ISM" and they "listen". There, is another GIFT of me coming back to this area. I realize my opportunities.)

I wonder what other folks think about this and if they might be able to identify with any of it. (See, now I am MISSING that folks thought of me ONLY as the "strong one". ;))

Catch 22, eh?

LOL!

ME

*Hope this made any sense! :) ANY feedback welcome...
**And this is very vulnerable sharing. Thanks again, SF! ;)

[WILDCAT]

Darling? Quit overthinking and bring up the point. There is no place more fitting. You are safe here.

But, "darling", I "process as I write", sometimes...:confused:

SMOOCH!

[SuperFemme]

I feel like you could be describing ME Wildcat.

Before being run down by a drunk driver, I was a VERY successful project manager in the real estate development field. I was a single mom, and probably amongst the most independent people I know. Asking for help was not in my nature.

After the accident I was so so angry. I wanted my job back, my life back. I wanted to be strong and independent again. For a few (more than a few) years my entire identity BECAME my brain injury.

I am not angry anymore. If anyone feels like it, my website www.adelespot.net is a journey through the path that led me to peace.

I am still strong in many ways. I am independent in many ways. BUT I am not always these things. I ask for help, I check myself when I become frustrated with others who don't *get* me.

My first step to peace was watching a movie called 13 Conversations About One Thing which told the tale of a girl who acquired a brain injury when hit by a drunk hit & run driver. In that movie she says that she asked herself Why? Why was she in that spot at that time? Why did she go to the drycleaner that day? Why? Why? Why? She concluded that sometimes there is NO REASON WHY! That was my ah hah moment. Once I let go of the Why the anger went away and I embraced myself. In the brain injury rehab I attended they taught us how to grieve our former selves. All the stages. How to love who we were and not be our own worst enemy/critics.

Hence the title of this thread. It may sound harsh, but it is my hope that by coming here and sharing not just the bad, but the good we can embrace ourselves as different. I see many threads on many sites accentuating the negative of being differently abled. Sure, there are many many downsides, but the upsides feel a lot more pure than they used to,.

I hope this all made sense. :argue:

[Rook]

I'm Deaf...
And proud of it....
I don't believe that being Deaf is a handicap/disability, nor does it need "fixing"...
We have our own Culture{and sub-cultures*Latino + deaf, Queer + Deaf, POC + Deaf etc*.. }, our own Language {ASL / British Sign/ AuSLAN, ETC..}, Signing is the worlds 3rd most used Language, with it's own Structures, it is NOT the same as spoken English...
When a Hearing person assumes all I need is an invasive surgery, or hearing aids to succeed in Life, I find it prejudiced, and insulting...
I oftentimes butt heads with my Relatives, since they're Hearing, and refuse to learn ASL..
My constant reminder to them is "As soon as I'm sufficiently Fluent in ASL, and Spanish Sign, u better know some of it, or be ready to Write a lot..Because I'm not wearing these things any more than I have to"
I'm not a Purist Deaf{anymore}, but I also enjoy when someone makes the effort to be a part of my "world"...

I also have Dyscalculia, chronic Insomnia, I'm diagnosed Clinical Depression, PTSD & Borderline Personality Disorder{Also abbreviated as BPD, but not bipolar heh} ....So I can, basically, proudly wear one of my buttons...
" I may not be Black Belt, but I do know Crazy"....

I have short term memory issues....
My boi gave it a lovely title... "Swiss cheese memory"..At first, hy thought I was fucking around, purposely/conveniently forgetting things discussed, but after a few times hy said "you're not messing with me, u really do have a memory problem"
which is true...and never does make much sense...
I can remember shit that happened to me years ago[oftentimes triggered FlashBacks, yeck]... I can have a photographic memory for things months ago, I can quote Shakespeare and E.A. Poe on a lark...But, don't ask me about yesterday, or the day before...Not w/o some effort or a helping clue, I will stare blankly, clueless{if I met you yesterday in person, be prepared to introduce yourself again}....And yes, I have a real shitty time remembering anniversaries and birthdays...I'm also chronically Late[unless I make the effort by arriving 1 hour early], but that's part of Dyscalculia or so Im told..

[atomiczombie]

I also have an aversion to receiving help from others. I think it's because I'm scared to need anyone, to show them my vulnerability. I am much more comfortable being the guy who has it all together and is able to nurture and care for the people he is close to. I pretty much disappeared off the internet for over a year, because I was so mentally disabled that I felt that I had absolutely nothing to say that would be of value.

I am still on disability for my panic disorder. I am just now finally starting to come out of my shell. It takes a lot of courage for me to tell people I have basically had a mental breakdown for the last year and a half and was too afraid to talk to people, answer my phone or leave the house for that long. But it is what it is, and I am getting a lot better every day. :clap:

[SuperFemme]

I also have an aversion to receiving help from others. I think it's because I'm scared to need anyone, to show them my vulnerability. I am much more comfortable being the guy who has it all together and is able to nurture and care for the people he is close to. I pretty much disappeared off the internet for over a year, because I was so mentally disabled that I felt that I had absolutely nothing to say that would be of value.

I am still on disability for my panic disorder. I am just now finally starting to come out of my shell. It takes a lot of courage for me to tell people I have basically had a mental breakdown for the last year and a half and was too afraid to talk to people, answer my phone or leave the house for that long. But it is what it is, and I am getting a lot better every day. :clap:

I'm so glad you're back. Seriously. Thanks for doing the hard, hard work you've had to do because you are valued. :gimmehug:

[SuperFemme]

***Bump***

I was wondering if anyone here has seizures? If so, do you find that cartoons, video games and/or flashing/blinking things on the computer exacerbate them?

I had a seizure the other day from a youtube someone sent me, and am curious to know if anyone else has this issue.

[Bit]

I don't have seizures, but strobe lights bother the heck out of me and I have to say that sometimes stuff on the computer screen makes me back up and turn my head away pretty quickly--especially youtubes.

I had to learn to ignore the movements of the smilies next to the posting window; I see them out of the corner of my eye as one picture with many disparate moving parts--and not synchronized, yanno? So it's sometimes hard to deal with.

{{{{{{{{{{{{{everyone}}}}}}}}}}}}}}

[SuperFemme]

I could just hug you right now Bit. I was looking in my brain for the word "strobe" last night but it would NOT manifest in an actual thought.

The smiles I can ignore, but avatars that "strobe" make it difficult for me to read for fear of a seizure. THANK YOU for you input.

[Bit]

{{{{{{{{{{{Adele}}}}}}}}}}} I lose words sometimes too... MAN do I hate that.... but they always come back eventually. It might be days later, but hey... eventually. *wry smile*

[WILDCAT]

***Bump***

I was wondering if anyone here has seizures? If so, do you find that cartoons, video games and/or flashing/blinking things on the computer exacerbate them?

I had a seizure the other day from a youtube someone sent me, and am curious to know if anyone else has this issue.


I certainly had two very different types of "episodes"... way back after the initial trauma. Acquired, thus from brain swelling. I won't describe much here, but one felt kind of nice and the other was REALLY horrible. It was quite subtle for anyone else to pick up on. (Well except when I would suddenly lose my gait walking down a crowded, busy street!)

I was "incapacitated" though. It would become too hard to just lift a finger, or answer anyone speaking to me. My brain just couldn't process that, not for delivery anyway. And the grief I felt during these. (Nearly on a spiritual level!)

There was evidence of paroxysmal discharge through some testing at a Mahattan clinic. (Could have started out one way and became "pseudoseizures" after time?) I had all the panic and anxiety, hyperventilation, memory loss, thinking my heart stopped in the middle of the night, etc... My left/right brain wiring was so screwed up. I know the medical folks focused more though on the "psychological trauma", my back/spine, physical therapy concerns - while I fought to remain independent (and wandered carelessly, aimlessly, staggering about the city like a drunken sailor at times)! It's funny now to think of the folks expressions coming at me when this would happen!

I went for ALL of the non-traditional therapy and treatment I could get myself into, especially as treatment like accupuncture became recognized as a legit medical treatment and accepted THEN by insurance companies! (Go N.Y.! One of the first areas to do so!!) I certainly was in the right town "that way" to get hurt! Regression therapy. Cranio-sacral, Chinese Herbs, myofascial release, on and on!! I took advantage!! (Which I attribute to the rate at which I healed.)

Anyway, NOTHING for years, (after a year and a half or so of these symptoms continuously, but becoming more and more, less prevalent). Then about three years ago, I felt one of the episodes coming on. I could NOT believe it. I was truly stunned. I recognized it though, told the person I was with that I was just going to sit and that I wouldn't move, or talk for a few minutes. Actually, she asked what she could do, and I asked her to just put her arms around me and hold me, very still. She was standing and I rested my head against the front of her, the most beautiful and healing place in the world, I believe! I was under a TON of stress right then (emotionally and psychologically), and was physically way over-exerting myself. I don't know what is structurally related either. I'm a MESS that way! Plus, I have a really BAD case of TMJ, and have had to be terrified for neuralgia attacks. Quite unpleasant.

But, I didn't know I was under stress. It seemed like just a "normal" time for me - at the time.

Anyway, when you wrote this Super... I thought STROBE affect. I do not care for that AT ALL, but didn't before my accident either. Like dancing out at queer clubs as a kid! I dislike it MUCH MORE NOW. (I'm a triple earth Virgo too though, and things need to make sense!?) So, I thought maybe the video you watched had a strobe affect, or I wondered if it was of a traumatic nature in content.

Someone posted a horrific video on another site of someone very BADLY injured, it was so graphic and was traumatic to watch. I wish I hadn't opened the link. (Head injury, not the "butt" one!! But, that one is now tatted on my psyche too!!)

However, once you mentioned the emoticons, I figured flashing or strobe of some kind. And I'm glad that you did. I'm sorry if I've used any emoticon with too much movement for you Adele. I really truly just simply overlooked that. I'll try and behave now! SMOOCH!

I know with birthday wishes, I cannot use the one flashing greeting all of the time. It doesn't feel right sometimes. But, that is not all of the time - and I never thought about it until now.

Anyway, this is a difficult subject for me to speak about. I wanted to answer you much sooner, but wasn't able to, until I gathered my thoughts about some of it. Plus, I am so private. I feel this is such a very good and important thread topic though.

And the "raise your freak flag" does not feel harsh to me - at all. I think that it is a bit funny actually. Gotta have some humor!! I'm just sensitive at folks being judgmental - for ANYONE. But, I admit that I've always loved being just a little bit strange! (You know there is "good strange" and then there is... the other, kinds... like "funny uncle" or something like that - and I don't mean a comedic relative.)

OK, I might be a "tad" crazy... so what?

Later!

Hugs ALL
WILD

*I apologize for my long, rambling "incoherent" (I've been told) writing style! Hope you get something out of it!!? At least it's a relief now to know some folks "skip" over my posts! Really.

**Shorter posts to follow though, promise!

[Cowboi]

***Bump***

I was wondering if anyone here has seizures? If so, do you find that cartoons, video games and/or flashing/blinking things on the computer exacerbate them?

I had a seizure the other day from a youtube someone sent me, and am curious to know if anyone else has this issue.




Red blinking lights are know to trigger seizures.

[SuperFemme]

Wildcat, I am sorry somebody said such an ugly thing about your posts. They are not hard to read to me as I can appreciate the thought process of a person with a brain injury.

I love your recounting of asking the person you were with when you felt an episode coming on to put their arms around you. It has been my experience that when people around me are freaking out it is harder for me to regain my senses. I was in Vegas at a bash and there were strobe lights, my femme friend took me to the restroom and hugged me while singing opera. So awesome and peaceful that was.

I know people love smilies, and they don't bother me so much as the strobe lighty avatars.

I NEVER skip over your posts.

Thank you for sharing here, it is crucial that we all know we are not alone in the things we go through. You are a miracle. Having the injuries you've had I am amazed by you daily.

[SuperFemme]

Red blinking lights are know to trigger seizures.

YES! When I go to the neurologist they shine strobe lights in my eyes to induce a seizure when I get an EEG (Electro Encephelogram). When Pokemon first came on the air it was giving kids all over Japan seizures...I wonder why the strobes cause this?

[suebee]

*I apologize for my long, rambling "incoherent" (I've been told) writing style! Hope you get something out of it!!? At least it's a relief now to know some folks "skip" over my posts! Really.

**Shorter posts to follow though, promise!

Well, I was going to post here about myself, but this is a chance to give an apology I've wanted to give for a week or more now.

Wildcat, it was me who said that your posts were long and rambling. (I don't think I said "incoherant" - but I may be wrong). I'll post later about myself, but for a number of reasons I tend to post literally at times, with no intention of offending. I won't bother disecting what happened in the exchange that led me to saying this to you, but it really wasn't meant to be offensive. Yeah, I know - maybe it's hard to believe.

In any case, I apologize if I offended you. And just to clarify - posts made after that weren't about you.

So, when I've digested THAT humble pie, I'll come back and post again. (if I remember to, that is!) :confused:

Sue :floatbee:

[Selenay]

YES! When I go to the neurologist they shine strobe lights in my eyes to induce a seizure when I get an EEG (Electro Encephelogram). When Pokemon first came on the air it was giving kids all over Japan seizures...I wonder why the strobes cause this?

The condition appears to involve the primary visual cortex, which processes visual information. The cortexes of photosensitive are easily excited; flashing patterns overwhelm them, setting off a barrage of neuron firing that overwhelm the cortex.

>source (http://www.wired.com/wiredscience/2007/06/mias-new-websit/)<

[SuperFemme]

The condition appears to involve the primary visual cortex, which processes visual information. The cortexes of photosensitive are easily excited; flashing patterns overwhelm them, setting off a barrage of neuron firing that overwhelm the cortex.

>source (http://www.wired.com/wiredscience/2007/06/mias-new-websit/)<

That was super informative, nobody's ever told me that. Thanks Selenay!

[Bit]

*I apologize for my long, rambling "incoherent" (I've been told) writing style!

**Shorter posts to follow though, promise!

No need for shorter posts--I like it when people have a lot to say--but I am SO grateful that you chose to put this one in a darker font! Darlin, old eyes have a lot of trouble with some of the very light fonts, yanno? Especially silver! *wry smile*

[Selenay]

That was super informative, nobody's ever told me that. Thanks Selenay!

:) Also, I don't know if you've read this but perhaps >this (http://www.epilepsyfoundation.org/about/photosensitivity/)< will help, as well.

[SuperFemme]

:) Also, I don't know if you've read this but perhaps >this (http://www.epilepsyfoundation.org/about/photosensitivity/)< will help, as well.

That was even more succinct Sel....I hope everyone clicks.

[violaine]

i'm waving :sock: :musicnote::walking-poodle::flying:

[WILDCAT]

I am SO happy that I just saw this in another thread - the BFP monthy report...

I was JUST getting ready to STEP back in here and "apologize" for the very strange intrusion into this thread - on "my username behalf".

Although, my space was shot here right then... I felt HORRIBLE that the rest of you shut down, and if anyone NEW here were possibly stopped in their tracks as well - at this time from any posting.

PLEASE AND THANK YOU!!!??? Continue on!!!!!?????

:awww:

I will rejoin when I feel comfortable. K?

Love and hugs to all,
WILDCAT

[Bit]

Wildcat, you didn't shut the thread down *puzzled look* I dunno why you would think that. Adele answered you in post #38 and I answered a couple posts later, and then the convo continued until we came to a natural stopping place.

Adele, congrats on being our Ambassador!

Yesterday I came SMACK up against my limits again. I walked to the bank and then from there to the grocery store... and by the time I got to the store I was sick as a dog from the pain. *sigh* I recovered kinda slowly (at one point I just had to lean on the grocery cart and wait to get my breath back), and was feeling much better by the time I got to the cash register--looked up and saw the sign advertising for a customer service clerk.

I actually considered it for a couple seconds.... and then I realized that if I couldn't even walk half a mile without getting sick from the pain, I could never work on my feet for even two hours, let alone eight.

This is what I hate about being disabled, that even when I feel relatively better, I must ALWAYS allow for the pain.

[WILDCAT]

DECEMBER 3rd:

INTERNATIONAL DAY OF PERSONS WITH DISABILITIES

I hope EVERYONE has a beautiful day!!!!!!

Lots of love and peace to ALL!


WILDCAT


:moonstars:

:heartbeat:

[Bit]

Oh... this is my day then? Not sure how I feel about that, lol.... kinda grumpety and crankety, I think.

Oh wait... I felt like that already. Never mind, carry on. ;)

[SuperFemme]

I am SO happy that I just saw this in another thread - the BFP monthy report...

I was JUST getting ready to STEP back in here and "apologize" for the very strange intrusion into this thread - on "my username behalf".

Although, my space was shot here right then... I felt HORRIBLE that the rest of you shut down, and if anyone NEW here were possibly stopped in their tracks as well - at this time from any posting.

PLEASE AND THANK YOU!!!??? Continue on!!!!!?????

:awww:

I will rejoin when I feel comfortable. K?

Love and hugs to all,
WILDCAT


Darling Jude. You did not shut down this thread or lose your space.

We are here for you and love you just the way you are. Please come back immediately with one of your fabulous posts. Don't let your brain injury get the better of you, m'kay?

I got the flu and have not been able to post coherent thoughts. That is all.

xoxo

[SuperFemme]

YouTube- Living and overcoming life with a disability

[SuperFemme]

A window into my life

YouTube- Living With Traumatic Brain Injury

[WILDCAT]

Darling Jude. You did not shut down this thread or lose your space.

We are here for you and love you just the way you are. Please come back immediately with one of your fabulous posts. Don't let your brain injury get the better of you, m'kay?

I got the flu and have not been able to post coherent thoughts. That is all.

xoxo

Awee, sorry you were not feeling well.

No "darling Adele", I didn't shut anything down here. However, I wanted to be considerate, just in case and acknowledge that I know this space is vulnerable for some - as it is very much so for me.

Yes, my "space" was abruptly (not drastically)... "altered". (That sound more pleasing to you?) And now by some of my choice. This is WAY too much attention drawn to me - especially on a new site.
:alieninjar:

Feeling painfully "shy" right now. I know there are people though who will read this very sentence alone, and will really "see" it - in very special regards. That is something I love with the writing here in our community! Some wonderful hearts and souls.

*Smile

On topic:

Thanks for posting these helpful and informative video's, New Ambassie!

The brain and it's functions are truly amazing, fascinating... and recovering from brain injury is so uniquely different and strange, difficult - all experiences we understand with each other. That is nice.

I had one side of my brain shut right down for awhile and the other side really "opened" up. That was a very interesting time. (And a long time ago!) I was so left brain for so long, and then went so quickly into right brain! Now, I look back and see it as a wonderful journey that I was fortunate to experience.

I did re-injure (test?) myself winter before last here. My car was totalled. I went by that spot last week one night, and my gut twisted up a bit - and sure as heck... there was car head down in this deep culvert, right where I had ended up during a snow storm. Holy shit, did that set off some "stuff". Wooo-hoooo!! Amazing, our emotions, and psychological selves and all!!

:rollcat:

(Using only slow emoticons for you! Tried not to use any, but my compulsive nature took over, sorry... :worried:)

Anyway, another area of discussion though, for sure. (Well, the right/left brain... more of a spiritual plane thing to me.)

I hope everyone had a great week, DAY and has a wonderful weekend.

I hope I play some music, on my drums or some instrument here! I've really been struggling and struggling with that for a long time now, (getting back to "creating").

Tonight, I don't feel too hot/great though. So, I will close now.

HUGS -


*Still some length here for you "fans"!
Wink...

[SuperFemme]

I am wondering how one can be one of these whilst being differenlty abled?

Whether by trauma, illness or chemical imbalance working through a day can be hard work. Some of have to process a lot and use compensation strategies for the things we CANNOT do.

It really chaps my hide when somebody comes along and declares someone who is D/A a victim. Usually it is somebody who wasn't able to victimize a D/A person lashing out.

Has anyone had this experience? Have you felt like you never live up to what others say you should?

[SuperFemme]

Can Sel puh-lease stop stealing my high scores. It makes me want to spank her with my good arm. :sado:

[WILDCAT]

I am wondering how one can be one of these whilst being differenlty abled?

Whether by trauma, illness or chemical imbalance working through a day can be hard work. Some of have to process a lot and use compensation strategies for the things we CANNOT do.

It really chaps my hide when somebody comes along and declares someone who is D/A a victim. Usually it is somebody who wasn't able to victimize a D/A person lashing out.

Has anyone had this experience? Have you felt like you never live up to what others say you should?

HEY, SuperMama!!!!! There ya are! Hi. Hope your holidays are in gear.

So, I was "in one of my head episodes" well, for... it's been around two weeks now. Off and on, but I had bumped my head somewhere here at the cabin. I remember that, but not where... And now the "period cycle" is coming/kicking in - many of us have flare-ups with our problems during this chemistry change in our bodies. I know you know this. Smile

BUT, I was messed up and confused. Sugar. I had to run out and take care of some business and I just told everyone, "I am confused right now in case it seems like I am struggling". Problem solving was NUTS for me. It was kind of animated too though! Smile... But, everything was so damn "complex", and seemingly out of nowhere!!

But, to your last set of questions here: I'm not sure, I don't "think so". You process so well, I know it is not without great effort at times though. But, my fear IS that I will be judged, yes. (That I was "headed for greatness and such a sad thing this happened", yaddy-yadda...) I feel like other special things kicked in for this "experience" having happened. But, it did stop "in my tracks" - and change direction most definitely from where I was at. (Bereavement at it's finest hour. Wink.)

I took my 80 year old father to PT this summer and noticed right away that his therapist was challenged. He did not notice, nor did my mother who is super observant. She had a stroke I think (or perhaps a BD), and I could see her processing things - both verbally and movement wise. I felt very proud of her, actually... amazing I thought she was! She is a young mother who lives now in my old hometown - where my parents live (out in the woods a bit, really... a kindred spirit).
__

Did you see that another thread was started on PTSD? I could really relate with that from back in the day - well, and these past two weeks or so TOO! I'm feeling like I need to keep my responses to just one thread primarily though. AS, someone notes there (and I think I already did earlier HERE), "this is such vulnerable" stuff for [some of] us.

So, it's the holidays. The best way to deal with those, for me - was/is to just "not deal" some years. That is WAY easier! (No crowds if you're not shopping... )

OK! Long enough for now. Welcome back SuperFemme!!!

Hugs to ya!

WILDCAT

*ETA: Is "challenged" OK to say? I mean no offense... (At one time that was the PC term.) I totally get "differently-abled". I just say whatever and want to know. Thanks.

[Selenay]

Can Sel puh-lease stop stealing my high scores. It makes me want to spank her with my good arm. :sado:



I'm sorry Miss Super. I have taken a voluntary break from the arcade for the past week. I promise to keep it up and not win anything new until New Years. That should give you a whole week in which you can be The Best.

I hope this pleases you :D

If it doesn't you can spank me, cuz I'm game for that. :fallenangel:

[Andrew, Jr.]

I just saw this thread today. I had no idea it was here. I had started another one long ago...what do I do?

Andrew

[SuperFemme]

Differently Abled and bridging the communication gap....

I know that there are several of us who are oft misread in this format. For *Me* having a Brain Injury can lead to impulsive responses coupled with tangential thinking. What I mean by that is I can go into a thread about Tomatoes, which makes me think of salads or Italian Food, which may or may not remind me of my bad date with a cannoli. I tend to take readers on a round about journey with me that can lead to head scratching and offended posters who think I am not being serious.

When I am reacted to with anger or animosity I tend to want to lash out on the same level. Sitting on my hands is an art form.

So how can we we bridge this gap? I think work on both sides must happen. It's one thing to say "Hey, I am differently-abled" and an entirely different thing to say "Because of my different-abledness, I am often impulsive and tangential. If doing so has upset you and confused you please pm me so we can talk about it".

I wish we had a little icon like a handi-cap placard we could place in our profile that is visible so that other posters have some kind of indication.

Thoughts anyone? How do we as Differently-abled going to be proactive?

[Corkey]

I have a question please? I am differently abled, physically, not thru a brain trauma, is this thread only for those of the community who have brain traumas? I ask cause I don't want to step on anyones space.

[SuperFemme]

I have a question please? I am differently abled, physically, not thru a brain trauma, is this thread only for those of the community who have brain traumas? I ask cause I don't want to step on anyones space.


No Corkey you belong here. When I speak from the Me place it ends up being in relation to brain trauma because that is part of my differently-abledness.

My physical limitations come into play as well because when I am in pain, or on chemo it affects me and how I engage with the world around me.

My goal is to make sure that we all (no matter the nature of the different-ablility) are heard and part of a community that is inclusive to us all. That is a new undertaking in the online community IMO.

So welcome to the thread. Share. About anything you want to. This is a safe place where you (general you) can laugh, cry, and share about navigating planet earth and the butchfemmeplanet while being different.

[Corkey]

Thank you, for the inclusion I appreciate that.
I still find it ironic that abled bodied people see my cane and not the person, and they park in disabled parking and run into the store, while I'm left looking for the next closest parking spot.
Chaps my ass to no end.
The newest peeve is when I'm using the stores mobile chair, and cart pushers think it's easier for me to back up than it is for them to stop, wait and then go around me. Those chairs don't stop on a dime ya' know!
Thanks for a place to rant....end rant.

[friskyfemme]

I just attended a Seminar last week on dyslexia. Even though I have lived wth this for years there really hasn't been too much hepful info on it. I was pleased to find out that at least now it can be detected as early as 1 yr old.
Also there are teaching methods developed to help us. Of course though it's expensive and could take years especially for adults to erase all the trauma of traditional education.

But, I am up for it. :dance2: Actually, I am seriously considering becoming a tudor and perhaps opening a school for persons with dyslexia. :party:

Facts a 30yr government funded research revealed: 1) 20% of the population have some form of dyslexia frm mild to profound. Higher than Autism rates.
2) it is genetic with 50% chance of passingit on to offspring. 3) right and left halves of the brain are equal size(person w/o rigt half is 10% smaller). 4) person w/dyslexia are great artists :violin: , architects :glasses: , social workers :gossip: ,techies :computer: .

Anyway it helped me to know that I am not among a small group. I hope this helps some others as well.

Oh also...I learned I am also ADD. I need to spend more time learning about this.

[Daywalker]

:artist:


**Flying Freak Flag Hella High**
:grandpiano:

I'm currently medicating, but I shall come back n read n participate later.
:supermanbooth:



:pacman:



:daywalker:

[SuperFemme]

I'd like to have a discussion about invisible disablities.

This thought is spawned by the Food Stamp thread, and the fact that so many people look down upon and judge those who are seemingly "capable and able to work".

Sigh.

My brain injury is invisible.
My leukemia is invisible.

For the first five years after my accident I was so ANGRY because I wanted to work. I cannot tell you how next to impossible it is for me to track things, multi-task, let alone the short term memory issues that leave me looking quite the fool because I had no idea that I had that conversation with somebody an hour ago.

Then along comes cancer, and there are days when my body is a living hell.

Today somewhere I read cancer = prvilige and I had to literally turn off my computer I was so hurt.

So those of you with Aspergers, ADD, Dyslexia, MS, Depression, Cancer, and the hundred other invisible disabilites...do you ever get fucking tired of having to quantify yourself to people?

Does it hurt you that some think you are deserving of assistance whilst others are not?

I really am just a normal girl, with some quirks that make my abilities different.

I don't want pity. I want understanding, which IMHO is so much different. I feel so isolated and misunderstood sometimes. In my perfect world people will judge me for what is on the inside of my beautiful self. The same as the rest of you guys.

I think this is a really important conversation to have.

FriskyFemme, I cannot even begin to imagine the frustration of going through life with dyslexia. It feels so unfair to me that you are just now finding the tools you need. I applaud you for wanting to become a tutor, and I hope you can be a mentor to others on this site who share in your dyslexia. Welcome to the thread, I'm so glad you are hear.

Sometime, if you don't mind, would you share what it's been like for you? How you navigate through a world of forms, books, readings etc? I want to be educated, and while I know I can go read a book (which I am willing to do) a personal journey to me is far more educational. I'd like to know what I as a human being can do to help out.

[Lady Jewel]

Please forgive the long post....So I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.

Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.

With all my love and support to the rest of you who fly your differently-abled freak flags.

[PearlsNLace]

A funny moment

So at a super bowl party there was this band playing, called "the who"
I didnt know who they were.
I also learned this week that the Rolling Stones are a band that is not related to the magazine in anyway, but I dont know what music they play.

This is only funny because apperantly these bands are quite big. I know this by the look of incredulity on my new boyfriends face as he discovers to what depth my hearing loss has allowed me to grow up in a media culture closet.

It was painfully emberrassing not all that long ago to learn that I was "supposed to know" who the Beatles were. I have at least an inkling now.

Its not painfully emberrassing anymore. The difference is that Im held in love and understanding. Patience and appreciation. And my experiences, being different, are valued. It gets to be funny. I get to look forward to a later exposure to new things now that there is you tube lyrics and special headphones that help drowned out excess sound and highlight voices. Movies and music both are something Im slowly exploring.

Ive lived 35 years without it though, and its ok that Im not rushing to "fix" my lack of understanding. WOW.

It makes a difference. I get to enjoy the humor of it all because im not veiwed as broken. I hope I remember that, as I take care of my patients every day. Cause this acceptance of me as whole- wow what a gift. I want to give that gift to others.

[SuperFemme]

Thank you so much for this amazing post. You are a superhero Miss Jewel.
I have to admit that a few years after my accident I was able to look at it as a gift. I went from being a single momma working 80+ hours a week to being at home with the kids all the time.

My anger left my body and I focused on the blessings that came with it.

For those of us who are able to do that? To pull ourselves out of the "Why me" mindset I find that we have a much better chance at living a differently abled life infused with genuine happiness. That is key to survival and every day living.

So just. Thanks. Ariel is a very lucky girl indeed to have you for a Momma.


Please foirgivSo I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.

Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.

With all my love and support to the rest of you who fly your differently-abled freak flags.

[FeminineAllure]

I have lived with several invisible illnesses but I want to address bipolar depression at this time. I have lived with this for over 25 years. You can not see my pain, depression, anxiety but it is often there. I have always been open and upfront about having this. I find sometimes people will assume because I have had a really bad day or am just burned out or if I am genuinely sad some days it is because I have bipolar. That is not always true. I can have a bad day like everyone else and it can have nothing to do with being bipolar. That assumption pisses me off.
I also don't like to see the treatment or misrepresentation of the mentally ill in society by some of the hospitals, police, commercials, television, cartoons.
I am just naming a few sources where I have seen fun poked at bipolar disorder that was really inapproprite. If some hospitals provided the same treatment to diabetics, heart disease patients, etc... A physical illness, their doors would have been slammed shut by advocate groups.
There have also been threads not on this site but something about an ex being bipolar. So...the ex could not just be a bitch in general?, or simply done with the person or or or... The entire end of that relationship was because the ex had bipolar. EYE ROLL. Many bipolar people are stable and do take their medication.
Thanks for letting me vent SuperFemme.

[violaine]

asperger syndrome may physically present in quirky and clumsy, but that could be anyone off the spectrum as well.

when people do not see what it looks like on a daily basis, they can be so quick to make judgments ! a diabetic has blood glucose spikes with too much honey, and that seems easier for many people to relate to - there's a glucose meter, injections, or general acceptance of 'diabetic' complications.

i walk the roads daily between NT world and my ATypical [AT] wiring, and feel like another species with loads of expectations to 'fit' in, comprehend, agree with, and accept blindly of situations- in some cases these do make so little sense to me.

questioning people who are not on the spectrum has been a mixed bag for me ! i think my questions may come across unexpectedly because i present physically 'normal' [although i dislike that word immensely!]- and there's a possibility for : sense of confusion, defensiveness, or thinking i'm 'weird', even if i frame questions gently. in the work i do with animal welfare, my committee are real tight- there are no communication issues. however, in dealing with other board members - whenever i am asked, and i often am, to provide my thoughts- that's a slippery slope! depends on the person- backfiring of my need for further clarification has sure happened on line also. others forget [and i do hear that!!] i'm on the spectrum- therefore, am i set up for failure? there's no need to be 'failure', my processing simply cannot the same as NeuroTypical [NT].

[Lady Jewel]

Ms. Allure, I am so sorry that you have gone through the pat 25 years dealing with peoples ignorance. But remember, its THEIR ignorance, not yours. You know that when youve had a bad day and feeling (Fill in the adjective blank) that it was because you HAD A FUCKED UP DAY. Not because of your BPD diagnosis. I have always said that illnesses that start in the brain should be treated by society like any other illness. That we dont separate mental health issues from the rest of the body issues. Whats the difference?? Its ALL ilnesses of the human anatomy.

Warmly,
Jewel:stillheart:


I have lived with several invisible illnesses but I want to address bipolar depression at this time. I have lived with this for over 25 years. You can not see my pain, depression, anxiety but it is often there. I have always been open and upfront about having this. I find sometimes people will assume because I have had a really bad day or am just burned out or if I am genuinely sad some days it is because I have bipolar. That is not always true. I can have a bad day like everyone else and it can have nothing to do with being bipolar. That assumption pisses me off.
I also don't like to see the treatment or misrepresentation of the mentally ill in society by some of the hospitals, police, commercials, television, cartoons.
I am just naming a few sources where I have seen fun poked at bipolar disorder that was really inapproprite. If some hospitals provided the same treatment to diabetics, heart disease patients, etc... A physical illness, their doors would have been slammed shut by advocate groups.
There have also been threads not on this site but something about an ex being bipolar. So...the ex could not just be a bitch in general?, or simply done with the person or or or... The entire end of that relationship was because the ex had bipolar. EYE ROLL. Many bipolar people are stable and do take their medication.
Thanks for letting me vent SuperFemme.

[friskyfemme]

I'd like to have a discussion about invisible disablities.

This thought is spawned by the Food Stamp thread, and the fact that so many people look down upon and judge those who are seemingly "capable and able to work".

Sigh.

My brain injury is invisible.
My leukemia is invisible.

For the first five years after my accident I was so ANGRY because I wanted to work. I cannot tell you how next to impossible it is for me to track things, multi-task, let alone the short term memory issues that leave me looking quite the fool because I had no idea that I had that conversation with somebody an hour ago.

Then along comes cancer, and there are days when my body is a living hell.

Today somewhere I read cancer = prvilige and I had to literally turn off my computer I was so hurt.

So those of you with Aspergers, ADD, Dyslexia, MS, Depression, Cancer, and the hundred other invisible disabilites...do you ever get fucking tired of having to quantify yourself to people?

Does it hurt you that some think you are deserving of assistance whilst others are not?

I really am just a normal girl, with some quirks that make my abilities different.

I don't want pity. I want understanding, which IMHO is so much different. I feel so isolated and misunderstood sometimes. In my perfect world people will judge me for what is on the inside of my beautiful self. The same as the rest of you guys.

I think this is a really important conversation to have.

FriskyFemme, I cannot even begin to imagine the frustration of going through life with dyslexia. It feels so unfair to me that you are just now finding the tools you need. I applaud you for wanting to become a tutor, and I hope you can be a mentor to others on this site who share in your dyslexia. Welcome to the thread, I'm so glad you are hear.

Sometime, if you don't mind, would you share what it's been like for you? How you navigate through a world of forms, books, readings etc? I want to be educated, and while I know I can go read a book (which I am willing to do) a personal journey to me is far more educational. I'd like to know what I as a human being can do to help out.



Thank you for your acknowledgement of my frustration. I have always felt inadequate because I couldn't 'outgrow' dyslexia. I have been lucky to have gotten some helpful tools at least to read for comprehension. Actually the same tools used to teach 'Speed Reading' which I took my first semester in college. These help me to approach reading material in a methodical way (this is key in reading for comprehension). I can go into that further in another post. The problem that still exists is that dyslexia is NOT a reading disorder it IS a language disfunction. You see, written language is not a logical sequence. The letters used to form words don't make sense to me. In English, American English anyway, too many exceptions to rules exist: words that can be a noun, verb, or adjective like the word 'cool'. Also multiple meanings, words that are spelled the same but have different meanings, words that sound the same but spelled differently and have different meanings (sense,since). Unfortunately, reading for comprehension is NOT helpful in tests with essays questions. I often overlook small words like 'not'. Luckily most standardized tests are written in postive terms nowadays.
Dyslexia is found in the gene for language. Pathways in the brain for language are different for us. I learned written language by memorizing every word and detecting words inside words and trying to figure out what the 'whole' word means by it's parts. For instance 'developmental' develop 'create'; mental 'thinking'. Hmmm.
We are very visual thinkers. I commit words to memory by 'seeing' them in my mind and mentally filing them kinda like a thesaurus 'the dinosaur' <- my visual(lol). I have to stop writing for now. I am worn out. I have spent 2 hrs writing this.

I just want to say I would never want to trade my dyslexia for the pain you have endured. You are truly a Superfemme.

[friskyfemme]

Please forgive the long post....So I just read through this thread for the first time. With some trepidation, I will share what makes me "differently-abled". Its funny that I found this thread today as my daughter and I were having a conversation about me and my health today and how it has affected AND helped us. I'm crying as I share this story because it really is a story of triumph but also some sadness for me.

Ariel (My 16 year old daughter. My only child. My hope for the future and reason for living) and I were talking to today and I started telling her stories about herself from when she was in my belly to the present. We laughed. I cried, as I am now in the retelling of this encounter today. I must digress for a moment so that when I share what I said to Ariel, will make sense. My life as I know it, pretty much went to hell when I was 39. I am now 48. I was partnered. I had a job I loved. Was at the top of my game and never thought it would end. It started out with blinding headaches and neck pain. I went and saw everyone until the ENT told me it was in my jaw and needed to go see an Oral Surgeon who was also an MD. This Doctor, my hero, was known as the best Oral Surgeon in Vegas. Did all the diagnostic tests, Yada yada. Came back that the disc in my jaw had all but turned to powder due to arthritis and degenerative disc disease. Soooo..I went on leave from work. Went to the hospital and had reconstructive jaw surgery. The blinding pain I had was gone almost instantly. Went for the PT. Worked my ass off and was able to go back to work shortly afterwards. In subsequent months, I started having shooting pain down my arm into my hands. I thought it was Carpal Tunnel and started wearing a brace. A month goes by and the pain gets worse. So one night I spent four hours bent over Ariels Girl Scout sash sewing badges onto it. Well that must have been the straw that broke the camels back. Woke up the next morning and had pain like my arms has gasoline poured on them and set on fire. Went to my PCP and he sent me to have MRIs of every body part. Turns out that 3/4 of my cervical spine had NO discs left between the vertebrae at all so I was basically bone on bone. Had to go thru a million (Well NOT that many, but certainly felt like it) painful diagnostic tests before surgery could be done. Well, nothing got better, only worse. I ended up having 3/4 of my cervical spine reconstructed. Woke up from surgery with NO pain. Yayyy!!!. Did the PT so I could regain the mobility in my neck. About five months later, the pain began again in earnest. Back to the orthopedist. Well, more bone spurs grew back and they had to re-do the entire surgery all over again. So Another surgery and another 5 days in the hospital, but this time I ended up in the ICU. Oh I forgot to mention between neck surgeries I travelled from Vegas to the University of Iowa, which has the number one orhtopedics program in the country , for a second opinion with an Orthopedist and a Rheumatologist. Diagnosis: Degenerative disc disease in my C-T-L-S spine. Degenerative arthritis. Some type of inflammatory autoimmune disease. Oh and one of the worst cases of Fibromyalgia the Rheumatologist has ever seen. Soooo...Got through the second surgery, About 7 months later, the pain in my lower back became unbearable, and yup, you guessed it...another two surgeries on my lower back. Came out of that in a wheelchair with the prognosis that I would always need that powerchair. I called bullshit on that. Yeah I needed for a while, but fought my way out of that one. One of the wonderful legacys that the surgery left me, was the Vascualr surgeon damaged the lymp nodes in my abdomen which gave me Bi-lateral lower limb lymphedema. My legs were so filled with fluid that the girth was 27 inches around my ankles. So in my handy dandy wheelchair that I was still in, I took the Paratransit bus to the lymphedema clinic three times a week. In the middle o very hot Las Vegas weather. part of the treatment consisted of three layers of special bandages from my thigh to my toes. Real nice in 117 degree weather. Finally got the lymphedema under control. Yayy!! LOL. Decided Ariel and I needed girls day out. Took my powerchair and Ariel on the Paratransit to one of the casinos that had a movie theater. We had brunch. Went and saw a few movies and had a great time. Paratransit come to get us. Loads me and my chair onto the bus and proceeds to speed throu the parking lot at 45 mph. Flys over a speedbump, he had strapped the wheelchair I was sitting in wrong and I flipped backwards. Hurting my neck and back. Spent about a year in treatment trying to get over the injuries I sustained. And believe it or not, I smiled through all this and really did a good job moving on. Fast forward two years, my partner of almost nine years calls it quits. Same day as I was diagnosed with steroid induced diabetes. Soooo...she went her way. Ariel and I got a new place. My new life was set to begin. One week to the day we moved, I decided to go meet Ariel at the bus stop because my car needed a new alternator and was not going to be fixed till that night. As I was walking to get her, an old man in a truck wayyyy tooo big for him, ran me over. Backed up and hit me again. I still dont get that. Poor Ariel was passing by on the bus and saw her mama get hit. It was awful. I was under the truck waiting for the ambulance and I could hear Ariel screaming. Was taken to the hospital. Basically hurt my arm, shoulder, lower back and neck. Yet another thing to get through. Which I did. The massage therapist I was sent to after the accident to help with spasms used to tell people that were in the waiting room, "Look at this woman. She has been through more in 9 years than 10 people should go through in a lifetime. She always has a kind word, a smile and hug for me and anyone she feels needs it". So I always felt that maybe that was the Universal reason I needed to go through all this stuff. To make people see that even in sadness and pain, that there can be happiness.
Ok, so back to the conversation Ariel and I were having today.....We were talking about how lucky she was that she wasnt a latchkey kid. That she always had me home when she needed me. How I was so available to her. And I reminded her that the only reason that I was able to do that was because of all the surgeries and health issues. She asked me if I could change that, not have all this stuff, would I. I thought about it for all of two seconds and replied, "Honey, I wouldnt trade ALL this pain and aggravation EVER. It was through all of this crap that I was able to be here for you. Most kids will never know what it is like to have a parent around 24/7". She came over, hugged me tightly. "Mama, I love you so much".
So how lucky was I to have been blessed with ALLLLL this stuff? Ive never regretted it for a moment.

With all my love and support to the rest of you who fly your differently-abled freak flags.
Lady,
You are truly a great inspiration! Blessings to you! May Great Spirit wrap you in love and peace. Aho.

[SuperFemme]

A lot of invisible disabilities are often stigmatized in a very ugly way.
Bi-Polar is a medical condition, with a lot of social stigma attached to it that is inaccurate. Dyslexia often goes unseen in our educational systems and students are put in classes with the developmentally disabled.

People with Asperger are also so misunderstood most of the time as socially inept.

Brain injury is invisible, but often the behaviors that come along with it make people think the person is crazy or stupid.

Addiction is also a disability that is very stigmatized. It's a disease (although I am sure somebody will come in here and debate that)

At what point is it safe to reveal? I personally like to reveal it all upfront, because if you can't handle being around me I don't wanna fall in love with you only to lose you for the things I am not in control of.

I tire of how ugly our society has become that people like Sarah Palin can demand a Politician resign for using the word retard and then out the other side of her mouth defend Rush Limbaugh because he is being satirical so that is ok.

Rush, who suffered the disease of addiction should be more careful.

[Kenna]

No Corkey you belong here. When I speak from the Me place it ends up being in relation to brain trauma because that is part of my differently-abledness.

My physical limitations come into play as well because when I am in pain, or on chemo it affects me and how I engage with the world around me.

My goal is to make sure that we all (no matter the nature of the different-ablility) are heard and part of a community that is inclusive to us all. That is a new undertaking in the online community IMO.

So welcome to the thread. Share. About anything you want to. This is a safe place where you (general you) can laugh, cry, and share about navigating planet earth and the butchfemmeplanet while being different.

Thank you, for the inclusion I appreciate that.
I still find it ironic that abled bodied people see my cane and not the person, and they park in disabled parking and run into the store, while I'm left looking for the next closest parking spot.
Chaps my ass to no end.
The newest peeve is when I'm using the stores mobile chair, and cart pushers think it's easier for me to back up than it is for them to stop, wait and then go around me. Those chairs don't stop on a dime ya' know!
Thanks for a place to rant....end rant.

One main reason why I LOVE BFP and adore the friends I've met here.... there's open space and individual space, and I've been welcomed and accepted... no-matter my differently-abledness status... and I don't feel targeted or pushed to the side for being different. I was a victim of a very violent domestic violence TBI (years ago). But the injury has never been treated other than spending 2 weeks in the hospital. (I've tried to learn to live with it...Some days are really hard, especially when I can relate my current health, difficulties with various tasks & ability to maintain memories and thought processes, back to the TBI. I didn't have health care at the time. Although, my last job helped because I worked for Medical Assistance in the "Special Populations Unit" - TBI was one of the State Programs we managed and coordinated with the Department of Health.)

Mostly these days though, I suffer from Lupus... today is a very painful day.
Thank you for making me feel welcome and accepted!

[Andrew, Jr.]

Yep, I get told that I am lying about my head injury all the time. However, when these people "see" the Cat Scan's, and MRI's you can see the color in their faces change to bright red. They are so embarassed by their words.

I also have multiple disabilities. My diabetes is the newest one. It has plaged me for years, but I was able to maintain my weight, and the highs/lows of my blood sugars so I didn't need to have insulin, or any pills. That has changed. The endo. that I see told me that what has been happeneing is that the sugar in my body has been acting like strands of glass and ripping and tearing my body appart inside out. That is why my body takes longer to heal when I cut my foot open when I walk barefoot in the summertime. Or I get pneumonia I am on antibiotics for months. So now I have to take the diabetic pills to help my body.

I am more verbal online than in real time. It is just that what is inside comes out moreso via the computer. Too many trolls, and favoritism kill threads like this. I hope and pray this one keeps going. For example, you have those who think something is wrong with me (well, yes there is), but don't want to talk about it. Or if they understand the deficit they run the opposite way. It is fear. Like trying to understand someone talking who is severely disabled and drools as they speak.

In school I failed. I had tutors, but no real help in getting me thru school. Today if you had me in school, I still would fail. I hated school. Just the memories of it give me a bad taste in my mouth. When folks talk about going to their high school reunions, I refuse to go. Why do I want to see the fruits of others successes, and families who bend over backwards to help their kids out, when all I could do was keep from drownding. Life is not fair. I learned that the hard way.

Now as I am aging, my disabilities are getting worse, and more visable. For example, my seizures. They are becoming more intense and longer.

The one thing that really upsets me to no end are the people who are corporate hotshots. We all know them. The ones who "talk" about being ceo of their family's insurance company, or the people who travel all over the world for certain companies to advertise xyz, or the ones who start up their new ventures, and so the list grows and grows. I am happy for these folks. Truely I am. But it is very hard to swollow someones glory when I am sitting in physical pain, and I can't verbally express it. It is isolating.

I just hope and pray nobody feels the isolation that I do. It is hell.

Andrew

[SuperFemme]

Andrew,

I think many of us feel the isolation that you do.

We met about seven years ago (can you believe it's been that long?) when you shared your brain injury with me. When I read your posts I read them with a special understanding that only a person with TBI can have.

You are NOT alone.

Hey? When you have seizures do your dogs sit on you? When I wake up my min pin has his face covering mine.

The people that TRULY love me and get me? They say nothing when I tell them the same story like 1000 times because I don't remember I told it in the first place. They understand my swiss cheese brain and love me BECAUSE of it, not in spite of it.

I've seen lots of people go to bat for you, and I know that you have friends. I think the biggest blessing you could strive for is to not isolate yourself. Does that make sense?

When I get embarassed, impassioned and make mistakes my first inclination is to isolate. Instead, I have learned to laugh at myself and accept that it's just who I am now. Don't get me wrong, I have strong moments of self doubt and anger. I just refuse to stay in that head space.

hugs,

adele

[Daywalker]

Andrew,

I think many of us feel the isolation that you do.

We met about seven years ago (can you believe it's been that long?) when you shared your brain injury with me. When I read your posts I read them with a special understanding that only a person with TBI can have.

You are NOT alone.

Hey? When you have seizures do your dogs sit on you? When I wake up my min pin has his face covering mine.

The people that TRULY love me and get me? They say nothing when I tell them the same story like 1000 times because I don't remember I told it in the first place. They understand my swiss cheese brain and love me BECAUSE of it, not in spite of it.

I've seen lots of people go to bat for you, and I know that you have friends. I think the biggest blessing you could strive for is to not isolate yourself. Does that make sense?

When I get embarassed, impassioned and make mistakes my first inclination is to isolate. Instead, I have learned to laugh at myself and accept that it's just who I am now. Don't get me wrong, I have strong moments of self doubt and anger. I just refuse to stay in that head space.

hugs,

adele


I laugh at Me all the time.
:rolleyes:
It has saved mah Gifted life more times than not.

I used to say
"If you cannot laugh at yourself, others will do it for you"

Beating them to the punch is unintentional, but a pleasure all the same.
:downhillski:

I have more to share, very soon...promise.
:byebye:


:fan:

:daywalker:

[Andrew, Jr.]

Adele,

Yes, I do remember! I close my eyes and I see you. I remember our hug. It was fabulous. Like Indiana Jones and his woman friend (I can't think of her name). ;)

As for Dino, yes. After my seizures, he is on my head, and starring at me. Eye to eye. I can't get over it. He is just my everything.

I am always laughing at myself. You have no idea. It is like an adventure with me every day. Nothing is normal in my life. But what I mean is like the everyday sort of thing with other people. They just have no idea. None. I just had someone call me a retard in the grocery store because I asked him 3 times for the aisle no. for oranges. There is none. Who knew? You would have thought I was shopping for milk, eggs, and tp, and God knows what else there was. We were having a snow storm. :piratelaugh:

[SuperFemme]

Adele,

Yes, I do remember! I close my eyes and I see you. I remember our hug. It was fabulous. Like Indiana Jones and his woman friend (I can't think of her name). ;)

As for Dino, yes. After my seizures, he is on my head, and starring at me. Eye to eye. I can't get over it. He is just my everything.

I am always laughing at myself. You have no idea. It is like an adventure with me every day. Nothing is normal in my life. But what I mean is like the everyday sort of thing with other people. They just have no idea. None. I just had someone call me a retard in the grocery store because I asked him 3 times for the aisle no. for oranges. There is none. Who knew? You would have thought I was shopping for milk, eggs, and tp, and God knows what else there was. We were having a snow storm. :piratelaugh:

Right? I LOSE it in the grocery store. Somebody finally clued me into the fact that you can get a map of the grocery store from customer service. Then again, that would require me remembering to make my list in accordance with the map. Which I never do. Which means I criss-cross the store about twenty times.

God forbid I have to do something OUT of my routine. ACK! Then there are the things that are simple for most. Cooking for example. I tend to start fires. Remembering to rinse the conditioner out of my hair BEFORE I get out of the shower. Not using Benadryl cream for toothpaste. Taking the plastic cover OFF my razor before shaving.

I'm a laugh a minute. BUT I've learned to tell the guy I'm asking for the aisle oranges are on that I am disabled the first time around. Then we can laugh at me together the fifth time I ask.

Ha!

[Andrew, Jr.]

Adele,

You know what, I used Rosie's hairspray for deod. today. My underarm hairs had no idea of what was going on. :cracked: And brushing my teeth with Benedryl is typical in my house. We just go with the flow here.

As for my routines, I have to stay with them. If I go off my routines, I have more anxiety than Mt. Everest. :seeingstars:

Oh, yeah, I just go with the flow. I just wish society was more compassionate towards folks like us here in this thread. It seems that society is going backyards instead of forewards. And the lack of compassion is growing each day. Look at handicapped parking spots. That is just a nightmare. So many are willing to start a fight over parking spots. How much more petty can we get than that? :fencing:

[Rockinonahigh]

I laugh at myself a lot for the same reason Mr.Day dose,cause if I dont they will, being profoundly deff on one hand is a blessing and on the other a royal pain in the ass.I have learned to deal with the hearing world far better than it has with me.Acctually not hearing other peoples bs is a good thing,with my aids on its way to much to process so lots of times I dont have them on.G-d help me when the vertago hits and im like a saterday night drunk.Since I quit :cowboihorse: rideing my balance is worse at times....then there is the stuttering that with as much therapy I have had over the years pops up now and then.All in all I just keep going on cause its the way my world is,the peeps that count are ok with it,the ones who arent..well its there prob not mine.
Rock

[friskyfemme]

A lot of invisible disabilities are often stigmatized in a very ugly way.
Bi-Polar is a medical condition, with a lot of social stigma attached to it that is inaccurate. Dyslexia often goes unseen in our educational systems and students are put in classes with the developmentally disabled.

People with Asperger are also so misunderstood most of the time as socially inept.

Brain injury is invisible, but often the behaviors that come along with it make people think the person is crazy or stupid.

Addiction is also a disability that is very stigmatized. It's a disease (although I am sure somebody will come in here and debate that)

At what point is it safe to reveal? I personally like to reveal it all upfront, because if you can't handle being around me I don't wanna fall in love with you only to lose you for the things I am not in control of.

I tire of how ugly our society has become that people like Sarah Palin can demand a Politician resign for using the word retard and then out the other side of her mouth defend Rush Limbaugh because he is being satirical so that is ok.

Rush, who suffered the disease of addiction should be more careful.

I have always tried to hide the fact I have dyslexia with my clients and my coworkers. I would spend hours rewritng my reports until they were perfect so as not to appear ingnorant or illiterate. I still do this for the legal documents, but the rest I don't worry about. I do laugh myself sometimes when I read what I wrote. I actually dated someone fo a very short time, who thought it was funny to stress my out to the point I could not talk. I am not easily rattled but I do have my 'buttons' . When I talk I have to think about what words I am saying and if they are the correct words. When I am tired or stressed it is more difficult. I used to worry about others not thinking well of me, now I am not. Now when I tell people I am having a dyslexic moment they laugh with me not at me. Sharing with others gives them the opportunity learn and show compassion and be
relieved they don't have to deal with your issues.

[Rockinonahigh]

Dyslexia....yep that little devil often plagues me far more than I can count.recently I have desided to go back to work on a full time basics,so I revamped my resume' with info for the last five years...well u gessd it,the person doing the redo called and ask me to either come in and read what I wrote cause it looked like pig latin to her.Letters/numbers backwards,scentences made no sence,some letters wrighten in caps in the middle of lines.I told her to chill out cause its the world of dyslexia moment.
Seriously all in all cosidering I was a very small preemie that weighed 1 pound and 14oz way back in 1947 when they didnt have all the modern medical advances of today haveing to deal with the deffness and its odd goings on as well as dyslexia with the goofy stuff it dose.Acctualy I feel blessed to have delt better with all this than ppl who dont have such issues cause it has taught me more about liveing than more able ppl do.I too hide it as best as possable cause some peeps just dont get it or care how the comments they say make me feel or anyone else who is diffrently abled.

[FR]

--hi guys i dont post much but i thought this issue important to me so i wanted to share. if u are like me disabled or not and depend on supplements for ur health please take action. ty

http://www.care2.com/causes/health-policy/blog/mccain-and-dorgan-continue-to-attack-dietary-supplements-fight-for-your-health-freedom/

[hippieflowergirl]

a while ago i discovered, quite obliquely, that i'd been accused of "attention seeking". i was going through a challenging time and needed to talk about it...to ask questions about it...to be heard when i was afraid. i was probably more vocal than was comfortable for the audience in question. it was on my mind 24/7 and 365. the meds were always wrong or symptom control was unpredictable or things would be great for a week and then suck for a day...and then be great for a week and then suck for two weeks...it was crazy making. i asked questions of random people, asked for advice, for help, i talked about it non-stop because it damn well mattered to me that my life was changing so much, so fast, and in ways i couldnt control.

attention seeking? damn right. i would have screamed from the rooftop if it would have made something make sense or if i could have found one person who DIDNT say "it's going to be okay. dont worry. you have so much time and so much to look forward to." if one more person says "dont worry, it's going to be okay" i'm going to gut them....because guess what? it's NOT okay, and it's NOT going to get better, and thank you for caring so much but your caring does not mean that i feel differently all of a sudden.

i dont wallow. i never have. but i'm scared out of my mind some days and it's not going to change unless i can sit with that fear and honor it and embrace it and let it have a damn voice and get it outside of me so that it doesnt consume who i really am. i am not the disease. i didnt stop being me when parkinson's came to live in my brain with the rest of me but i'll be damned if i'm going to pretend i'm not freaked out 8 days out of 7.

attention seeking? damn fucking right i'm attention seeking. and i'm doing it honestly and in a straightforward manner and i'm trying to have a damn sense of humor about it too. i dont think i'm worse or better off than anyone else because i'm not busy comparing. i'm just trying to do things one breath at a time. if i dont do it in the same way someone else does, if i'm not nearly as gracious or half as courageous or even remotely as well adjusted as someone else then excuse the fuck out of me...because gues what? i'm not gracious and i'm not courageous and i'm not any more or less well adjusted than the next sort of human.

not only am i attention seeking some days....i'm perfectly okay with life on others. depends upon the day. doesnt it with everyone?

i dont think i'm special because i have parkinsons. i'm special because i'm a kick ass righteous little smart mouthed bitch and i know it (most days).

attention seeking. yeah baby. i'm seeking. so pay attention. i'll return the favor any freaking day of the week because i dont expect you to want any less than what we all want...a witness to your life and someone to hear your voice.

everybody wants that.

EVERYBODY

[Allison W]

Mine... would be clinical depression (apparently with dependent, avoidant, and borderline personality factors but--thankfully--not full-blown disorders). I'm trying to deal, I really am. The meds help, and today, I really am fine as long as I'm not given reason to stress out. It's just that ordinary life includes so many utterly terrifying things.

Admittedly, sometimes I feel like I'm just lazy next to people who have "real problems," like relatives with cancer (one died in the past year; the other was diagnosed with a severe cancer and is now doing all right due to a very harsh chemo regimen), or some of the people on this thread.

I do hope to eventually become well enough to take care of a home or manage a part-time job, even if I'm never completely independent.

Hippiegirl: our disabilities are different, but I do know what it's like to play the pill-roulette game, experimenting with different medicines and cocktails and what-have-you to find out what one or what precise combination works. It is a bitch and a half and definitely a game I wouldn't miss if I never had to play it again.

[hippieflowergirl]

Mine... would be clinical depression (apparently with dependent, avoidant, and borderline personality factors but--thankfully--not full-blown disorders). I'm trying to deal, I really am. The meds help, and today, I really am fine as long as I'm not given reason to stress out. It's just that ordinary life includes so many utterly terrifying things.

Admittedly, sometimes I feel like I'm just lazy next to people who have "real problems," like relatives with cancer (one died in the past year; the other was diagnosed with a severe cancer and is now doing all right due to a very harsh chemo regimen), or some of the people on this thread.

I do hope to eventually become well enough to take care of a home or manage a part-time job, even if I'm never completely independent.

Hippiegirl: our disabilities are different, but I do know what it's like to play the pill-roulette game, experimenting with different medicines and cocktails and what-have-you to find out what one or what precise combination works. It is a bitch and a half and definitely a game I wouldn't miss if I never had to play it again.

i wouldnt give it up either. PD has given me more than it's taken away. but i'm sick and tired of the attitude...so i'm flipping some back along the path it came down.

my message was meant to be a sort of, "just because you dont see it or understand what you do see doesnt mean someone's scamming you. and if you think someone's whining, or clamoring for attention, or feeling sorry for themselves...maybe they are. did you ever think to ask why? it's not like you havent done it yourself ya know. trust me, it's a human being thing. if you're disgusted by human weakness go find some perfect people to hang out with because, personally, i'm a mess at least one day during the year." (and that's the general you...not any specific individual in this forum)

why not ask a couple of questions or do some intellectual legwork of your own before declaring someone "less than"? is it really that hard? or are you (again, the generalized YOU) just too lazy to pry your ass off of your self-indulgent superiority complex and be a compassionate human being?

[Kenna]

I don't often like to announce such things in detail....

I am Differently Abled.... with several different illnesses, but the Lupus is my main struggle. I do not appear to be differently abled when a stranger sees me getting out of my car, or helping my Mother do her chores, or walking my dogs on a beautiful day... I've slimmed down after gaining a lot of weight due to damaged knees, am as active physically as I can be, can climb mountain paths when my body allows, can carry heavy items in on good days, and can be "one very hardy, tough cookie" when my body is not totally rebelling against me. After I have worked hard or "over done it", my body tries to shut down on me sometimes. I have bad knees, back and kidneys.... many symptoms from the Lupus that make my 38 year old body feel completely broken and drained of life-blood, oxygen and energy some days....I suffer from depression and PTSD due to hardships faced and survived from... (these are not the only things that make me differently abled, but the only things I wish to share at this point)

I get really angry and frustrated when someone in the public sees a differently abled person and assumes that because they are walking upright, that they do not deserve to use a handicapped parking space or the little go-buggies in the store, or they insist that they are not entitled to special medical care such as the Special Pharmaceutical Benefit or Breast & Cervical Cancer Screening, Diagnosis and Treatment Program or a Medical Assistance Program designed for "Special Populations" because they are Differently Abled and/or use Health Sustaining Medication. I get very snappy at the young, disrespectful, very abled 20-somethings that get snappy and nasty with my very Differently Abled Mother because they have no manners or respect for those of us that can't get around as easily as they do. I watched a young woman today take the only handicapped spot, and she didn't have a handicapped placard... after we parked up the lot and were walking past her (with my Mother walking very slowly and obviously labored), the security guard asked her for her placard... she commented "F*** You!! Do you see any handicapped people around?" the guy asked her to move her car... her response "any moron that wants me to move can just wait until I'm done!" Too bad he didn't have the power to write her a ticket. Right in front of this girl, Mom handed the guard her placard... the guard said "sorry Mam, the only thing I can offer is to go get you a wheelchair or electric cart." The girl looked at Mom as if she were the Purple People Eater, gave a disgusting comment and continued inside with her hateful attitude. I wanted to knock her block off!! But Mom said let it go.

Today, I was walking upright without aide (and not curled up in the fetal position on the couch)... was able to get around better than my mother.... but today is a day that just putting my feet on the ground causes great pain and feels like I'm walking on hot coals... once I get going, I can keep a momentum... but grit my teeth most of the way. Because of fighting off very chronic pain... I get exhausted very easy and am seriously wishing I could take a nap. The sunshine feels so good.... but being in direct sun for extended periods of time causes problems. After being so worn out and occupied with "fighting" my body today, I have no patience or tolerance for ill-mannered, bratty, disrespectful people who obviously are self-consumed and self-centered.

Sorry for my rant... gritting my teeth all day has made my nerves raw.

[SuperFemme]

Sweet, thanks for sharing about yourself.
Welcome to the thread.

Just remember, people like that rude young lady are going to grow old some day. Karma is a bitch.

I can totally relate to everything you wrote and concur and agree with you on all your points, and also empathize with you on many.

Savor your good moments and forgive yourself the hard ones. :love1:

[WheelieStrong]

i use a powered wheelchair due to living with Cerebral Palsy, and i have weight issues.
I have both a Colostomy and a Urostomy which make me feel completely ugly but i am so much more independant since having them.. But they won't help with dating i don't think

i've recently been told i am diabetic

i have mental health issues that are acknowledged, and are similar to bipolar disorder but no one will diagnose me because i don't fit a neat little box.
i have anxiety, panic and self harm issues.

i also seem to have an addictive personality so avoid things a lot.

i have control related food issues

i do beleive that all these things have helped make me the person i am today, and i can be an incredibly nice, and even romantic person but i think i am going to be single a hell of a lot of my life

[WheelieStrong]

My daughter, who is differently abled (I love that expression by the way and am going to adopt it forthwith; 'disabled' sounds so negative), still believes in Santa (she's now 22). Because she believes in Santa, I get to believe in him too;)

i'm 30 and i know santa exists and i'm never going to say anything different even if i have to dress as Santa to make people beleive it! :p

[SuperFemme]

i use a powered wheelchair due to living with Cerebral Palsy, and i have weight issues.
I have both a Colostomy and a Urostomy which make me feel completely ugly but i am so much more independant since having them.. But they won't help with dating i don't think

i've recently been told i am diabetic

i have mental health issues that are acknowledged, and are similar to bipolar disorder but no one will diagnose me because i don't fit a neat little box.
i have anxiety, panic and self harm issues.

i also seem to have an addictive personality so avoid things a lot.

i have control related food issues

i do beleive that all these things have helped make me the person i am today, and i can be an incredibly nice, and even romantic person but i think i am going to be single a hell of a lot of my life

Welcome! I'm so glad you shared with us. I bet your spunk, personality, and will to live make you incredibly attractive. (f)

Also, YAY for you for gaining more independence with the procedure you had. Again, those things do not make you un-datable. They add to the whole package.

[Andrew, Jr.]

I had to get a sticker for my car to go thru the tolls. It was so frustrating because I couldn't figure out what toll booth sold the stickers and what toll was for the EZ Pass thing. It took me 5 attempts to find the right toll. Talk about frustration. UGH! Then when I found the right tollbooth, the person was getting ready to leave for the day. I was her last customer. My nerves were just shot after that.

Then I had to deal with the cash. UGH!

Sometimes I ask people to explain things to me and they take it the wrong way. For some reason they think I am playing a game. I'm not. I am wired differently. I am not one for understanding concepts. I struggle with it. Then I get people who say things to me like they are happy to expose me to others. Expose me to others as what? Oh, as stupid, lazy, fat, what? I just get even more confused. It makes no sense to me. It is like telling me to go meet someone in another state at a certain time.

I don't know about other people, but telling time was a royal bitch. Thank God above for digital watches and clocks. The other kind are just nothing short of hell for me. Did anyone else have this problem?

[SuperFemme]

Andrew? When you ask for extra help do you preface that by saying "I'm disabled, I have a brain injury and I need a little extra assistance"? I have found that when I do this, people are usually more than willing to help. I have no problem coming out as differently-abled over and over again. It can be the difference between life and death sometime. Like when I get a new prescription? I need to be walked through the dosage instructions VERY carefully. Still, sometimes I make dangerous mistakes with my meds.

As for telling time? No worried, digital time is most everywhere...

[Andrew, Jr.]

Hi and Welcome Wheeliestrong,

I am glad you are here with us! :hangloose:

I know how you feel about your situation. I can so understand it. People are strange. I think if you don't fit into a typical sterotype or box, then you get a label as a trouble maker or a misfit. I have that label since childhood.

I never could keep up with other kids. Never. And nobody who was in a position to help me would help me. They just passed me along to let someone else deal with it. That is the public school system as I knew it to be.

Anyway, thanks for sharing your story with us.

Adele,

I never thought of coming out and asking for help. I will start to do that. It never crossed my mind. Thank you!

[Andrew, Jr.]

Hi Everyone,

I hope everybody is doing well today. I want to share some information here that will be somewhat of a shock to some & a joy to others. On May 26th I am having surgery for possible breast cancer. It seems I have a tumor in the shape of a banana that is going from an 8 o'clock position and ending up at a 2 o'clock position. It is hard, and has given me some side effects of cancer. My mother and grandmother both had breast cancer. I have a sister who died of skin cancer. And I have another sister who is in remission from ovarian cancer (8 years).

I am not too worried because I talked to Linus about this, and he gave me the best advice. He said one sentence to me, and it was the truth. He told me to rely on my faith. So I am.

I trust my surgeon, who is Yale trained. I have no doubt about it - I am going to be just fine. I know I am. I just ask for your prayers and positive thoughts sent my way.

Thanks.

Much love and peace,
Andrew, Dino, and Gang :frog:

[Leigh]

Hi Everyone,

I hope everybody is doing well today. I want to share some information here that will be somewhat of a shock to some & a joy to others. On May 26th I am having surgery for possible breast cancer. It seems I have a tumor in the shape of a banana that is going from an 8 o'clock position and ending up at a 2 o'clock position. It is hard, and has given me some side effects of cancer. My mother and grandmother both had breast cancer. I have a sister who died of skin cancer. And I have another sister who is in remission from ovarian cancer (8 years).

I am not too worried because I talked to Linus about this, and he gave me the best advice. He said one sentence to me, and it was the truth. He told me to rely on my faith. So I am.

I trust my surgeon, who is Yale trained. I have no doubt about it - I am going to be just fine. I know I am. I just ask for your prayers and positive thoughts sent my way.

Thanks.

Much love and peace,
Andrew, Dino, and Gang :frog:




Andrew,

This breaks My heart to hear, because your one of My dearest bro's. I've seen what cancer can do to loved ones and others, and I hate to hear that anyone I care about has it. I am sure you will be fine but its still scary to hear that you have to deal with it, no matter how good the surgeon is. You've always been there for Me and this time is no different, I'm here for you if you need Me bro ........ take care My friend *hugs*

[WheelieStrong]

On May 26th I am having surgery for possible breast cancer.


i will be thinking of you, i know you don't know me but i will support you if i can

[DamonK]

I've been reading this thread quietly...

I'm in the same boat.

I have no vision in my left eye, crappy vision in my right eye.

I have very little hearing in my left ear, a bit more in the right.

If I don't have my glasses/contacts and hearing aid, I'm fucked.

So, I have problems with dizziness. I have problems with coordination. I'm a klutz. I don't fall down AS often, but just last night, I couldn't get off my front porch because I couldn't see the step. I have next to NO depth perception. Tripping is not unusual. I trip over flat surfaces.

I don't consider english my first language; american sign language is. I'm fluent in asl and english sign language (esl). I hear through vibrations.

Unless I see it, or it's a tremendous downpour, like you'll be soaked in less than a second, I don't know what rain sounds like.

You can't whisper to me.

You can't talk to my back. You'd be amazed how many people I've pissed off, thinking I'm ignoring them. I flat out didn't hear you.

Sometimes, others are stupid and think yelling is the answer. It's not. You're just pissing me off when you do that. Slow down and talk clearly. But don't slow down so much that you're ridiculous. Don't treat me like I'm an idiot. Deaf does not equal dumb. I could be smarter than you.

I need asl interpreters for school. I try to go it alone, but most times end up needing the interpreters. I get stared at when someone is signing to me. That annoys my social anxiety. It's disconcerting to be in a classroom of 50 people and 48 people are staring at you, including the professor.

I'm lucky. I've had good interpreters. One told off my entire class for doing so. Including the professor. It was fantastic.

I laugh about my .... lack of abilities.

I was lucky to be alive.

[Andrew, Jr.]

Thanks guys. I appreciate your support. I really am trying to stay positive. If the tumor is cancerous, I am going to go to NIH. I figure Fiercegrrl and I need to get Building 10 in order. :cowboihorse:

[SuperFemme]

Welcome to the thread DamonK.
I promise not to whisper or yell. :stillheart:

[DamonK]

Welcome to the thread DamonK.
I promise not to whisper or yell. :stillheart:

lol... ty..

[WingsOnFire]

I've been reading this thread quietly...

I'm in the same boat.

I have no vision in my left eye, crappy vision in my right eye.

I have very little hearing in my left ear, a bit more in the right.

If I don't have my glasses/contacts and hearing aid, I'm fucked.

So, I have problems with dizziness. I have problems with coordination. I'm a klutz. I don't fall down AS often, but just last night, I couldn't get off my front porch because I couldn't see the step. I have next to NO depth perception. Tripping is not unusual. I trip over flat surfaces.

I don't consider english my first language; american sign language is. I'm fluent in asl and english sign language (esl). I hear through vibrations.

Unless I see it, or it's a tremendous downpour, like you'll be soaked in less than a second, I don't know what rain sounds like.

You can't whisper to me.

You can't talk to my back. You'd be amazed how many people I've pissed off, thinking I'm ignoring them. I flat out didn't hear you.

Sometimes, others are stupid and think yelling is the answer. It's not. You're just pissing me off when you do that. Slow down and talk clearly. But don't slow down so much that you're ridiculous. Don't treat me like I'm an idiot. Deaf does not equal dumb. I could be smarter than you.

I need asl interpreters for school. I try to go it alone, but most times end up needing the interpreters. I get stared at when someone is signing to me. That annoys my social anxiety. It's disconcerting to be in a classroom of 50 people and 48 people are staring at you, including the professor.

I'm lucky. I've had good interpreters. One told off my entire class for doing so. Including the professor. It was fantastic.

I laugh about my .... lack of abilities.

I was lucky to be alive.

Have I told you lately how fucking proud of you I am??? Well.... I am!! You live life to the the fullest you are possibly capable of and then you reach further... I am glad that you laugh when I walk away talking to you forgetting you cant hear me from the bathroom to the kitchen... I am learning... I will continue to learn.. But I respect you... And yes, you are one of the lucky ones who are not only alive but truly thriving... You make me so damn proud to call you Daddy...


your precious babygirl... who is excited as hell that you get to go back to school!

Becca

[WingsOnFire]

Welcome to the thread DamonK.
I promise not to whisper or yell. :stillheart:

well I have to admit I do whisper to him at times.. I forget and will be laying in bed and talking softly to him... then when he doesnt hear me I raise my voice and blow his eardrum.. :giggle:...

[SuperFemme]

well I have to admit I do whisper to him at times.. I forget and will be laying in bed and talking softly to him... then when he doesnt hear me I raise my voice and blow his eardrum.. :giggle:...

I think THAT kind of whispering is just fine, no? You two are a sweet couple. :beerbros:

[DamonK]

Have I told you lately how fucking proud of you I am??? Well.... I am!! You live life to the the fullest you are possibly capable of and then you reach further... I am glad that you laugh when I walk away talking to you forgetting you cant hear me from the bathroom to the kitchen... I am learning... I will continue to learn.. But I respect you... And yes, you are one of the lucky ones who are not only alive but truly thriving... You make me so damn proud to call you Daddy...


your precious babygirl... who is excited as hell that you get to go back to school!

Becca

But honey........ it's priceless when you've had most of a conversation with me without me being there then ask a question and I don't respond and you come after me with "I was talking to you baby" and my absent minded look around..."ooooohhhhhhh" and comprehension dawning across my face...

It's funny.

[WingsOnFire]

I think THAT kind of whispering is just fine, no? You two are a sweet couple. :beerbros:

lol... yes it would be fine if he could hear me... lol... Sorry that just cracked me up when you said that... cause I do it all the time and forget... and thanks for the compliment...

[DamonK]

lol... yes it would be fine if he could hear me... lol... Sorry that just cracked me up when you said that... cause I do it all the time and forget... and thanks for the compliment...

*snickers*

It's frickin hilarious!

[WingsOnFire]

But honey........ it's priceless when you've had most of a conversation with me without me being there then ask a question and I don't respond and you come after me with "I was talking to you baby" and my absent minded look around..."ooooohhhhhhh" and comprehension dawning across my face...

It's funny.

Yes and I am learning now to stop talking until I am in your presence again.. lol

[fiercegrrl]

Thanks guys. I appreciate your support. I really am trying to stay positive. If the tumor is cancerous, I am going to go to NIH. I figure Fiercegrrl and I need to get Building 10 in order. :cowboihorse:


i was SO hoping the doctors at NIH would want to take over my care. mainly cause i wanted to be able to ride the elevator there, multiple times a day. it makes me think of the elevator in the bubble room of willy wonka that blasts through the ceiling and into the sky!!!
my therapist tells me to find something to look forward to every day. it would have fit the bill!

[freyja]

Good evening,

i just spent the last while reading every single post on this thread.

i was glad when i got to Corkey's post because it answered my question; whether physically challenged folks might find a place amongst the "freaks" *grin*

Bit said: This is what I hate about being disabled, that even when I feel relatively better, I must ALWAYS allow for the pain.

This is how i feel. My physical capabilities are disintegrating and i have to come to terms with my new life.
Or a new chapter in the book called "MY autobiography".

i see myself in many of the people in this thread, in this special place where the "freaks" gather. i am independent to a fault. i cannot do the same things i once could. i need to ask for help.
Oh my goodness, how terribly hard that is, to open my mouth and say "I can't do this. Will you help me?" (sigh)

i also want to say good luck to Andrew Jr. with the upcoming medical situation.
and a helloooooo to my friend becca and her wonderful Daddy, Damon.

More things on my mind, so many, just overwhelming sometimes as i struggle with acceptance
(c/b society, people, myself, the affliction or all of the above)

[SuperFemme]

Welcome Freyja! Nice to have you here, and ALL forms of different-ness are welcome. Heck, everyone is welcome.

I like what you say about your autobiography...I feel the same. Sometimes the new chapters scare me, sometimes they make me laugh, sometimes they make me cry, and I am always grateful to be able to do editing.

(((freyja)))

[Andrew, Jr.]

Welcome DamonK and Becca! You guys rock! :guitar:

Freyja, I am so glad you are here with us! (f)

Fiercegrrl, you got that impression of the elevator too at NIH? :firefox: :detective: And here I thought it was just me being me the whole 2 times I was there already. :cracked:

[freyja]

Good morning and thank you for the warm welcome.

i must say that while the body may be challenged, the mind is alert.
i was out on the balcony watching the sun rise this morning, while the seagulls screamed, " get up get up everyone a new day is here!
What a blessing it is to start the day with a beautiful sunrise.
That is one thing we can all count on, no matter what is happening in our lives.

If you haven't ever done it, try and at least once in your lifetime,
put it on your bucket list and go to the beach and watch the sun rise out of the water.
It will literally take your breath away.

[SuperFemme]

I love the sunrise here coming up over the hills of grapes. It's not the ocean, but it sure is a different kind of beautiful....

Watching plants grow is also amazing. Weird, huh?
But to put something in the earth, nurture it, and then cook it or just admire it? It's a reminder of how much there is to be grateful for.

[Soft*Silver]

I dont think I have posted in this thread on this site. I have several health issues that limit my abilities, which have also caused me to become a creative thinker. I dont like limits but have grown to acknowledge I have them, and so I work on figuring out ways to do the things I love. Like gardening. I am now putting together an extensive vertical garden so I have very little kneeling work to do.

I would like to share with you what happened to me this weekend at my daughter's college graduation. The first four levels of seats where reserved for people with disabilities. So entire families were saving seats and that meant that the reserved seats were "reserved" fairly quickly and people with true handicaps could not get seats. One lady had five seats saved...when I asked her if they were saved she said yes...I then asked her if everyone was disabled who was going to be sitting there and she snapped at me and said "are you?" My eyes got huge. I had to hold myself back so I didnt go overboard but yes, my volume increased and I informed her I was indeed disabled and if she walked in my shoes she would know. Later, her family showed up. She had one of her parents sitting with them, who was obviously disabled. But she and her husband and her two big strong strapping high school boys were not. This family was just one of many many people who took advantage of handicap seating. I watched as people with tremors, people who used canes and walkers, mothers with CP children, elderly who could in no way climb steps (bleacher seating) and folks with oyxgen all look desperately for seating and found none. If I could have stood for the ceremony I would have given them my seat. I have never witnessed a more pathetic example of how Americans have lost their sense or morality. Morality isnt about who is sleeping with who, or who is sending stock tips to who, or gay vs hetero marraige. The real morality issue is how uncaring so many of our people have become. The etiquette we once shared as a means of being courteous to each other has disappeared. People would like to say only the youth are that way. I use to say that. But not anymore. I now have witnessed where the youth have learned it from. I am writing a letter to the editor of our area newspaper to let them know how far down the courtesy scale we as a nation have gone...

[Andrew, Jr.]

When people see me in real time, they can see my limitations and my disabilities. It is right there in there face. Online I feel my disabilities are hidden. What word or words do I need to say to get this across to them?

[WheelieStrong]

When people see me in real time, they can see my limitations and my disabilities. It is right there in there face. Online I feel my disabilities are hidden. What word or words do I need to say to get this across to them?


hi, sorry if i am asking a dim question but do you feel that the fact that being online hides your disabilities and limitations, and see this as a good thing?
Or do you find this somehow hinders your comunicatios or self expression somehow?

i hope this makes sense, i've been spending a hell of a lot of time in Second Life which is actually where i found out about the planet..

i originally got a wheelchair for my avatar because i actually felt weird walking around, i do not walk around in RL and i know in SL avatars can fly, but my need for a chair is much more about my identity as a person than my ability within the world.

i am trying to spend more and more time without a chair and i will get up and dance with certain VERY cute people, :cheesy: but i just don't feel comfortable without it..

I guess it's similar to the fact that in Second life i haven't been able to find a realistic looking fat guy, especially a furry one *grin* and people tell me there i don't have to be like my real me.
But i feel being a skinny tall dark skinned dark haired, dark eyed athletic able boddied guy is a complete misrepresentation of myself.

i also feel when trying to socialise in spaces aimed at disabled/limited/differently abled/challenged/handicapable (lol south park) people, that i am expected to wear my disability as a badge of pride and if i am not using something that shows me to be part of the comunity i'm somehow being disloyal..

Does any of that make sense?

[Andrew, Jr.]

Wheelie,

I avoid Second Life.

I am not good with words or communication.

[WheelieStrong]

Wheelie,

I avoid Second Life.

I am not good with words or communication.


i started using second life again exactly because of that issue, i have no social outlet at all, most weeks i only see my ex, who lives with me and provides care, it all gets a bit too much for me

i don't cope in social situations, i've never cried so much with loneliness and frustration as i have in the weeks since i went back to trying to be social online.. but i can't go back to being on my own in the real world and nothing else.

My ex may live here but unless i need help, and/or she wants to shout at me, we dont spend any time in the same room.

[Andrew, Jr.]

Wheelie,

I am home too 24/7/365 unless I am at Church, or the doctors office or having labs run.

I was used to mailing out prayer cards for those who were hurting or sick, or who's parents were grieving. I also was used to sending reading material from the Church to those who asked for it all out of my own pocket. The Church never paid for that. I did. But it was my joy to do so.

Yep, I know about social isolation. That is the main reason I come online. That is why I hang onto my pets, and my outdoor activities like bird watching and feeding Hank and Honey. People may laugh at me, but they give me so much love and joy. I cry a lot too. I so know that feeling.

Anyway, sorry for my long rant.

Andrew

[SuperFemme]

i started using second life again exactly because of that issue, i have no social outlet at all, most weeks i only see my ex, who lives with me and provides care, it all gets a bit too much for me

i don't cope in social situations, i've never cried so much with loneliness and frustration as i have in the weeks since i went back to trying to be social online.. but i can't go back to being on my own in the real world and nothing else.

My ex may live here but unless i need help, and/or she wants to shout at me, we dont spend any time in the same room.

What do you think is frustrating you so much Wheelie? You so far have been articulate and easy to talk to. Honest.

I have NO idea what Second Life is, but assume it is something along the lines of WOW? You get to be a character?

My best advice to you is to keep on coming back and reading, posting, etc...socialize on small step at a time. I am ill and this is a big portion of my social network, being ill can be isolating. I don't know what I'd do without my community!

Please don't disappear because I hate to think of you over there with nobody to talk to other than somebody yelling at you. Ack! Private message me if you ever need to just talk. :mobilewheelchair:

[WheelieStrong]

Anyway, sorry for my long rant.


i hope it's ok just to give you a friendly hug which i can't find so *hug* sorry..

i didn't see any ranting, only saying how things are for you.. A lot of which i understand completely my guinea pig Sebastian is the one thing that probably keeps me sane in this world and he is my baby boy, he is the closest thing i will ever have to child but i think i would trust him more than a child any day..
he doesn't judge me when i'm struggling with things or my mental health has me all screwed up inside.

When i came out of hospital after maor surgery last year one of the first things i did was hold him and i couldn't help but cry because he genuinely seemed to have missed me, he licked me so much i just felt so special even if it was only a furry little animal weighing not much more that 2.2lbs who thought so.

i am so sorry people have hurt you!
People hurt me too which is one of the reason i am not very social in real life, but weirdly it doesn't stop me from trying to connect to people.

[Andrew, Jr.]

Wheelie,

I will take a hug from you any day or night. Much thanks! :thumbsup:

Yes, my animals are my life. I just adore them. I have a very deep bond with my pets. I cannot imagine life without them. I am just not myself of lately.

[SuperFemme]

does anyone else in here have kids or teens?

if so, do they try to walk all over you in regards to your different abledness?

[Rockinonahigh]

Hi Anderw n Wheelie I want u both to know that nither of u are alone in this world we live in even tho u are not as social as u wold like to be.I to understand the lonelyness that comes from being at home for what ever reason.As u may know im profoundy deff and many times my speach is sorta funky slow and not understandable.Over the years I have just delt with it by keeping my friendship group to the ppl that count,not ppl who make me feel bad or dont understand how being difrently abled is to deal with.I also have two fur kids who are my best friends who go most every where I go,yes I talk to them too and in there own way talk to me ..fur kids talk u just got to know how to listen.
For a while after my accident I went from haveing friends who were at my place every day,we did a lot of hanging out hear and there,went places and so on.After the accident....well most of them just droped of the face of the earth...and really that is ok cause if they dont want to hang with me cause now in a bit slower than before and need to becarefull in somethings I do,I really dont need theire bs.I figure its there loss not mine.One thing I do for myself is get out of the house even if its only in the yard doing something possitive.Wheelie if u have any kind of case worker or a way to find a suport group to get to know give it a try,there are programs that have buses to pick u up and take u to what ever they have planed,even can get u a medical aid to help if u need one.
Both of u can feel free to pm me anytime and I will anser.

[ravfem]

does anyone else in here have kids or teens?

if so, do they try to walk all over you in regards to your different abledness?

i have a 19 year old son. When he lived at home (he's out on his own now) he would walk all over me because i was too easy with him, but he never took advantage of my disability, per se. (i have cerebral palsy)

When he was a toddler/pre-schooler and we would watch tv together, he would hold my left hand and rub it against his face and talk to it. He called it "yittle hand" (little hand) i always thought it was sweet.

Are you having any kid issues, SF?

[SuperFemme]

i have a 19 year old son. When he lived at home (he's out on his own now) he would walk all over me because i was too easy with him, but he never took advantage of my disability, per se. (i have cerebral palsy)

When he was a toddler/pre-schooler and we would watch tv together, he would hold my left hand and rub it against his face and talk to it. He called it "yittle hand" (little hand) i always thought it was sweet.

Are you having any kid issues, SF?


for the most part my kids are really good, but sometimes they can work my brain injury in their favor. it makes me insane.

truthfully it makes me insane because i am never sure who is right. i can swear i said be home at midnite and the teen will stare at me defiantly and swear i didn't give a time.

mostly, i write important things down, but sometimes it is crazy making. the good news is that 98% of the time they are super protective of me.

it's been a long road to that point.

[ravfem]

for the most part my kids are really good, but sometimes they can work my brain injury in their favor. it makes me insane.

truthfully it makes me insane because i am never sure who is right. i can swear i said be home at midnite and the teen will stare at me defiantly and swear i didn't give a time.

mostly, i write important things down, but sometimes it is crazy making. the good news is that 98% of the time they are super protective of me.

it's been a long road to that point.

i was gonna suggest writing things down.

Tony would do that to me too....i think that's a teen thing in general, seeing how much they can get over on us. i finally started writing his curfews down on the dry erase board in the kitchen, and made sure he knew he was responsible for looking at it on the way out the door, that way he had to stop using the, "i didn't know what time curfew was" excuse. Also taught him that the ignorance defense in general wasn't gonna fly.

He is also protective of me. When we're out and i'm navigating steps or rough terrain, he walks slightly ahead and keeps an eye on me. It makes me so proud of him.

In general, teens really are as bad as all the cliches about them.

[WheelieStrong]

Rockinonahigh, i did try going to a couple of day centers, to get a break from being in my flat and stuff, but they were full of old people who slept most of the day and i would be the only person awake under 60 who didn't have severe comunication snd/or educational issues, so there was no benefit to me being there, at least at home i have access to the internet!

if you ever wanna chat i'm online most of the time :D

[Rockinonahigh]

Wheelie,have u tryed the senior citizens centers in your area//Ours hear has bingo,party nights,a really good lunch for $3.00 as well as a fue other things going on.Chek them out.

[Miami]

Hi everyone. Many of you who are from B-F know me as Miami Butch, but I thought I'd shorten it to Miami here. Anyway, I have been in and out of a wheelchair for many years now due to a motorcycle accident, arthritis in both knees, Spina Bifida and a myriad of other reasons. I'm ok with being a gimp. And I can call myself by that particular term all I want, after all, it's ME I'm talking about, not anyone else. There are certain perks that come with having a body that is otherly abled. Like, I get to go first in line at Disney, and I can park practically inside the gates, thanks to that wonderful invention the handicapped sticker, and I don't have to pay at a meter, as long as my handicapped plaque is displayed. The downside is that there are a LOT of places that are a royal pain in the rump to get into and out of, because they're not ADA compatible. Ever try to open a door while trying to keep your wheelchair from rolling into the street because the incline is so bad?? NOT pretty. lol
I'm ok with myself, and that's the most important thing. The thing that really ticks me off is when ppl assume that there's something wrong with my BRAIN just because my legs don't work very well. I hate when ppl condescend to me, and try to speak in simple phrases, as if I have a monosyllabalic vocabulary... You can imagine the surprised looks that I get when I not only answer in an intelligent and cohesive manner, but often, just to mess with the person's head, I'll even throw out a plethora of words which sometimes THEY don't understand... All the while laughing my ass off inside. Petty, isn't it? But sometimes, ppl need to be shamed into treating you as an EQUAL instead of as someone who is LESS.

[Rook]

Im currently working the details on " officially" making my ferrets into " service animals", they would be of enormous Help letting me know or be aware of nearby activity(i'm profoundly deaf*reminder*) and during the holidays, they can help me with calming down in places like wal mart, the crowds literally make my bp shoot up high , if i lose my familys location i realized my temper is lightning quick(borderline personality*reminder*) & i will feel intense confusion, dizzines with added bonus of occasional passing out, walmart hates when that happens , i'm a lawsuit waiting to happen i guess.... So, yeah, certify them , get i.d's for them and make sure i wont have to recite ADA..:candle:.:mohawk:

[Plato]

for the most part my kids are really good, but sometimes they can work my brain injury in their favor. it makes me insane.
truthfully it makes me insane because i am never sure who is right. i can swear i said be home at midnite and the teen will stare at me defiantly and swear i didn't give a time.
mostly, i write important things down, but sometimes it is crazy making. the good news is that 98% of the time they are super protective of me.
it's been a long road to that point.

It's been a long road, but with you, they KNOW where the sides of the road are!
Me, well, I tend to give them the benefit of the doubt.
That's why we have such a great sense of balance in our home.
THAT is an awesome gift to give our children.
I'm soooo happy you are such a GREAT Mommy.

[SuperFemme]

It's been a long road, but with you, they KNOW where the sides of the road are!
Me, well, I tend to give them the benefit of the doubt.
That's why we have such a great sense of balance in our home.
THAT is an awesome gift to give our children.
I'm soooo happy you are such a GREAT Mommy.

Are you saying I am the meanie poo poo?

Damn skippy I am. I can always count on you to make me feel like I am a good Mommy. Even when I'm not because I want to murder little people.

[Delish]

Where I lived on the MS/TN line, my job went down to p/t and after trying to find something else to supplement my income, I gave in and found a job and moved back to my mothers in Alabama. At first I looked at it as if it was a sign from God that I needed to be back where I said I would NEVER live again, to help my mother take care of my grandmother with Alzheimers. What I didn't know is that 1 1/2 months after being here my mother would have to take care of me.

I have always been a healthy, adrenaline junkie that LOVED stress, workaholic to I can't make plans with anyone because I don't know from day to day how I am going to feel. At first, my symptoms was MAJOR chronic fatigue and then things progressed. Long story short as I do not want to bore anyone, they are pretty sure it's Lupus. I have seen some good Dr's here and some BAD ones. I actually had one to tell me that it was Fibro/Chronic Fatigue because he just didn't know what else it could be.

I have , in the past, tested positive for Lupus but had other things going on at the time and dismissed the findings. This time I can't. Because of emotional stress, I found myself with a week long stay in the hospital 2 weeks ago. I am TRYING to adjust myself with this new life and think of it as some kind of blessing. So far I am not liking it too much :(

Does anyone else on the site have Lupus?

And btw...I am loving reading everyone's stories :)

[Plato]

Are you saying I am the meanie poo poo?
Damn skippy I am. I can always count on you to make me feel like I am a good Mommy. Even when I'm not because I want to murder little people.

It's not that you're mean, it's more that you speak their hidden "language". Yano the emotional undertones. I hear the words and deciper those instead of the 'feelings' that are driving them. Admittedly, my listening skills have greatly improved these last 4 years.
THANK YOU for that!

p.s. Thanks for helping me wash the skunk smell off the Dark Horse this morning.
:clap:

[SuperFemme]

It's not that you're mean, it's more that you speak their hidden "language". Yano the emotional undertones. I hear the words and deciper those instead of the 'feelings' that are driving them. Admittedly, my listening skills have greatly improved these last 4 years.
THANK YOU for that!

p.s. Thanks for helping me wash the skunk smell off the Dark Horse this morning.
:clap:


I can't smell the skunk,, but it feels dirty still. Gross. Gross. Gross.

[Plato]

I can't smell the skunk,, but it feels dirty still. Gross. Gross. Gross.

I saw de-skunker shampoo at PetCo yesterday.
Our conconction worked WAAAAAAAY better for faaar less $$$$

... oh and yes it's gross (the smell)

[Canela]

The understanding and support of even ONE person can change the course of a different-ability IMHO.

BEAUTIFULLY STATED!

[Andrew, Jr.]

I don't have kids, but have nieces and nephews. I also have kids in my neighborhood. My nieces and nephews and great nieces and nephews cover all age ranges from newborns all the way up to mid-30's.

They all know that I am different. It is very obvious for them. Let me give a good example. I went to dinner and was wearing black khaki pants with a navy belt. I thought it was black. I struggle with reading to them if they ask me for help with homework. It breaks my heart. Math is nothing short of hell. I point them to someone else for help. And my gosh, kindergardeners are being given computer classes. I can barely get on here. And these kids today have the knowledge and computer savvy - it blows my mind. :|

Now mind you, I can teach them how to swim, throw a football spiral spin, throw a curve ball, talk sports, smoke cigars & pipes, and all about boating.

I love kids, but am very grateful that I don't have any of my own. The support of 1 person is the difference between being 6 feet in a hole vs alive for me.

[Lady_Wu]

I have a number of autoimmune disorders. The most visible ones are MS and the damage caused to my eyes by MS. With the MS, I generally walk with a forearm cane, sometimes two if I'm in a flare. The one I use the most is decorated with flowers and butterflies and the Human Equality sign. When I'm in a store that has them, I use a motorized scooter to keep from getting utterly fatigued. Also when I'm out in the sunlight and/or a store, I wear a black patch over my right eye. If I don't, I get literally blinding pain in both eyes and a severe migraine. I'd like to get a nicely lined pink patch with lace!*smile*
People around here are known for their friendliness. But when I go out,say, grocery shopping for instance, I get DOUBLE points-one for being crippled and another for being half-blind!Amazing how friendly people turn out to be then! They TALK to me-gasp!-they offer to get things from the high shelves. They even offer to help my friend who drove me to the store carry the groceries to the car!I'm not meaning to make light of what being disabled is like. But I do try to find humour in my situation when I can. That makes bearing it much easier.
Later I'll write a post on what my diseases have taught me. This doesn't mean that I WANT to have them, or that I don't sometimes scream in frustration over my limitations now. But I HAVE learned lessons from them that I might nit have learned otherwise. But that's a different post.
Lady_Wu

[SuperFemme]

I wish I was in Chicago. I just learned that they have a "Disability Pride Parade" and Eli Clare is the Grand Marshal this year. The parade will be Saturday, July 24th in downtown Chicago.

I am copying their mission statement, because it made my heart swell up big.

http://www.disabilityprideparade.org/home.php

Our Mission

The overall mission of the Disability Pride Parade is:

To change the way people think about and define “disability”;
To break down and end the internalized shame among people with Disabilities; and
To promote the belief in society that Disability is a natural and beautiful part of human diversity in which people living with Disabilities can take pride.

The specific objectives for the parade are:


To organize a fully inclusive, annual event that will celebrate and strengthen the pride, power, and unity of people with disabilities, our families, and allies;
To generate national visibility of the Disability community


At the request of Sage Publications, Sarah Triano wrote the following definition of "Disability Pride" for the Encyclopedia of Disability:


" 'Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group's assumption that there is something inherently wrong with our disabilities and identity.'

"Dr. Martin Luther King, Jr. once wrote, "One must not overlook the positive value in calling the Negro to a new sense of manhood, to a deep feeling of racial pride and to an audacious appreciation of his heritage. The Negro must be grasped by a new realization of his dignity and worth. He must stand up amid a system that still oppresses him and develop an unassailable and majestic sense of his own value. He must no longer be ashamed of being black." Although there are many barriers facing people with disabilities today, one of the single greatest obstacles we face as a community is our own sense of inferiority, internalized oppression and shame. The sense of shame associated with having a disability has, indeed, reached epidemic proportions. Disability rights movements in different countries have made many gains in the area of civil rights over the past decade, but what good is an Americans with Disabilities Act or a Disability Discrimination Act if people will not exercise their rights under these laws because they are too ashamed to identify as being disabled? "As long as the mind is enslaved," King wrote, "the body can never be free." As long as people with disabilities remain ashamed of who we are, we will never realize the true equality and freedom we so desire. We must first take pride in ourselves as a community. We must no longer be ashamed of being disabled.

"Dismantling centuries of internalized oppression, however, and promoting a widespread sense of Disability pride is easier said than done. Unlike other civil rights movements, people with disabilities do not always have the benefit of a generational transfer of disability history and pride through the family structure. There are no "disability churches" per se, neighborhood enclaves, or other communal institutions where people with disabilities can come together by choice and consistently receive positive messages that counteract the depredation wrought by the onslaught of cultural terrorism. There is a tremendous need to create a counterculture that teaches new values and beliefs, and acknowledges the dignity and worth of all human beings. Disability pride is a direct response to this need."

Sarah Triano, National Disabled Students Union

"Today marks the beginning of our efforts to develop a whole community of people with disabilities and allies who are proud to be who we are, who do not see ourselves as victims, who expect more from ourselves and those within our community, and who are committed to building an inclusive community that recognizes the dignity, humanity, and worth of all people. We must put our efforts into transforming the hearts, minds, and souls of our people, for that is where our true power lies. As the great leader of our movement, Ed Roberts, once said, "My ability to regain the pride in myself as a person with a disability is one of the most important things that's coming out of what's happening here today." Whether or not Ed Roberts and his comrades successfully won regulations for Section 504, they left that important fight in our history with a new sense of pride in who they were - and that is their legacy and our heritage…. a heritage which I cherish and celebrate fully. I am Disabled and Proud!"

- Sarah Triano

[dixie]

Freak flag flyin' high... (and forgive me, this may be long...)

Most predominant is my laundry list of "mental" illness, with bipolar being at the top of that list. I do have bouts of depression, but luckily, I generally experience a level of hypomania on a day to day basis. For those that don't know, it pretty much means that I am one of the most perky, chipper, energetic folks you will meet. Yeah, I might get sad or angry but because of the mania, it usually disappears within moments. Also, things that anger or hurt others usually just bounces right off me, like that whole "water-off-a-duck's-back" kinda thing. To me, that's a blessing. It means I'm almost always happy, optimistic, and smiling like a darn fool! lol :D


Anyone who knows me knows I like being unique, so even my illnesses are unique. lol I suffer from a rare form of migraines called hemiplegic migraines. I spent months going in and out of the hospital, and a huge battery of testing had to be done to diagnose this condition. The reason for that is because this form of migraine can be easily misdiagnosed as stroke or epilepsy. It starts out with confusion. My brain doesn't seem to function and I can't form words or sentences. It sounds like I'm babbling. I have prolonged aura at onset, which means I see little sparkly stars and circles as a "warning" that the migraine is going to come. The aura can last anywhere from a few minutes up to a few days before the actual pain ever comes. The aura is so strong, that it overpowers my vision. Next comes the ringing in my ears, which then leads to me going "deaf" for the remainder of the attack. (The ringing goes away, and I am left with just a dull "deadness". I can't hear anything at all.) Next comes the numbness. The entire left side of my body goes numb. Sometimes one limb at a time, sometimes all at once. I'm pretty much temporarily paralyzed on that side. Along with the "paralysis", my tongue and throat swells. I can't speak, can't swallow, and sometimes feels as though I am choking. All of these symptoms are just the "warning signs" before the pain hits. And by gosh, it is some of the worst pain I've ever felt in my life. I lay in the cool darkness with a cold rag on my head, sobbing and rocking, feeling like someone has stuck an axepick in my head. It's horrible! The after-affects aren't good either. Once the pain subsides it takes a while to get my sight and feeling back. I'm usually very weak and end up sleeping for hours. It takes quite a while to be coherent again, and wreaks havoc on my memory. When I was first diagnosed, I was around 19 with a young child. Because these damn things hit so often and so unexpectedly, the doctors would not allow me to drive or even be alone, for over a year. Luckily, as I get older the episodes get fewer. They still do their damage though, and have pretty much eaten away at my memory capacity. :( I can't really find a blessing in this, although I have tried...lol

Another weird thing...my heart didn't grow when I was a child. Supposedly your heart grows as you grow, but according to my cardiologist, mine is still the size of about a 3-4 year old's. I'm not supposed to do anything to overly strenuous or lift anything too extremely heavy. But I also shouldn't be overweight and shouldn't smoke, but hey...ya know...

Oh, and I was just put on diabetic pills last year, because my bipolar pills finally pushed me over that "borderline" sugar level... yay me! lol

It's all good. I like being unique and different. I consider my whole life "outside the box"... (My dad lovingly calls me Abby Normal...lol) Plus, it helps me relate and understand a little of what others go through... :)

[dixie]

Oh yeah, the migraines are caused by a familial mutation on specific genes in chromosomes 1-19 (gettin' all textbook on ya...lol)

To me, that's just so cool. OMG! There is my silver-lining with this illness! I'm a mutant! Not quite as cool as a Ninja Turtle or an XMen character, but cool nonetheless... yeah... :D

[Corkey]

I'm having some issues these last few days, took some meds to try to sleep and now my mind is giving me fits. I can't sleep, but when I do I can't wake up...fibro fog for sure, but damnitalltohell it's 6PM and I want to be awake. Ugh

[SuperFemme]

I'm having some issues these last few days, took some meds to try to sleep and now my mind is giving me fits. I can't sleep, but when I do I can't wake up...fibro fog for sure, but damnitalltohell it's 6PM and I want to be awake. Ugh

sleeping has been an issue for me since my accident. i can usually get in a few hours at a time...

so my doctor gave me some sleeping aids. the first one? ambien? i totally freaked out, and my kids had to call cal over for help. i was apparently being ridiculous. know what? i do not remember a thing. needless to say, those meds went in the trash. next it was lunesta. same thing. trash.

i gave up on meds for a while, scared of having these "fugue" states where i act like a nut and everyone remembers it but me.

recently, in the hospital they gave me trazedone. which basically equates to a large dose of benadryl. it works, but i find it so hard to wake up...and my head is super foggy. so i only use when i am breaking down due to exhaustion. the rest of the time i take herbal sleep aids.

so yes. i feel for you corkey and can so relate.

here is some info on herbal/natural sleep remedies.

Nutritional supplements: 5-HTP (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2793000), Melatonin (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2883002)
Best herbal remedies: Valerian (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2179004), Corydalis (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2074006), Lavender (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2120003)
Other remedies: Chamomile (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2066005), Passion Flower (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2142002) and hops (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2108006)
Also look at: homeopathic remedies (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2258008), they are safe also for children
Dr Deepak Choprasuggests the following Ayurvedic remedies:
a cup of warm milk with two strands of saffron or some grated nutmeg

[Gayla]

I've been like that all day. I just can't seem to process what anyone is saying unless it's very clear and straight forward. I'm not in full blown fog yet, just that little haze that floats along the ground and makes it hard to think.

I blame summer. I've heard from a lot of people today that are foggy and flaring.

[Corkey]

Thanks SF and gayla, I know I'm not alone in this. The valerian I have, but because the issue I'm having is my gut, it's best not to take that till my gut clears up. When ever that happens I won't have to take the meds. Then I'll be back to my jovial self. Til then I'm in a bit of a funk. I need to get on the tread mill and move, I just have no energy. Me venting...not much I can do about it, just wait it out.

[SimpleAlaskanBoy]

I'm SAB, 31...I was born with hydrocephalus (water on the brain), a preemie two months early (and two pounds 12 oz) and was first shunted at two months old. I've had 20+ shunt revisions, and am currently going through what I believe to be a malfunction (a major reason to have the revision)
I also have major depressive disorder, and anxiety issues although the anxiety has lessened over the years. I'm on disability.
Just wanted to introduce myself.:koolaid:
~SAB

[SuperFemme]

I'm SAB, 31...I was born with hydrocephalus (water on the brain), a preemie two months early (and two pounds 12 oz) and was first shunted at two months old. I've had 20+ shunt revisions, and am currently going through what I believe to be a malfunction (a major reason to have the revision)
I also have major depressive disorder, and anxiety issues although the anxiety has lessened over the years. I'm on disability.
Just wanted to introduce myself.:koolaid:
~SAB

Welcome SAB. You ARE a miracle aren't you? So glad you're still here with us after such a rough start.

I had a shunt for around 1 1/2 years after a brain injury. I had a lot of stomach problems during that time. :(

What is the malfunction you have with yours? Is a revision a rough thing? I am super curious...

[Gayla]

Did I ever do the intro thing?

OMG Ambien. It was the first thing my doc gave me for sleep and it's the freakiest stuff. The first few nights I took it as I was laying down but then it took about 20 minutes to kick in so I started taking it about 20 minutes before I actually went to bed. I didn't do weird stuff, but all of the inanimate objects in my house did! I have a shelf of elephants (that I've been collecting all my life) they started dancing in unison. My shoes were moving around. At one point my desk stopped being solid and I could put my hand through it. I was kinda cool but then one night the walls started closing in on me, literally the ceiling was about a foot above my face when I layed down, I haven't taken any sense.

I tried Trazadone and it seemed to work well but the light sensitivity the next day made it really hard.

Now that I don't have to do the 9-5 thing, I've switched back around to what feels more normal to me and I think I sleep better. Usually that means I fall asleep between 2 and 3 a.m. and get up between 10 and 11 a.m. Out of that I think I get a good 5-6 hours of deep sleep.

We dug out the treadmill a few weeks ago and I notice I do sleep better on the days I actually use it. I find 10-15 minutes reduces the flare risk and helps me sleep ok but I have to do it earlier in the day, not in the evenings.

[SuperFemme]

oh my gay.
thank you for sharing your ambien dancing elephants here.

i was truly wondering if i was the only one who went batshit on the stuff.

[SimpleAlaskanBoy]

Welcome SAB. You ARE a miracle aren't you? So glad you're still here with us after such a rough start.

I had a shunt for around 1 1/2 years after a brain injury. I had a lot of stomach problems during that time. :(

What is the malfunction you have with yours? Is a revision a rough thing? I am super curious...

Thanks for your questions, Super...
A neurosurgeon I had in Alaska put the cause of a malfunction this way: The top layer of your brain flakes off like skin. Often, it is this material that clogs the shunt tubing leaving it unable to drain the CSF (brain fluid) it is supposed to. When I was growing up, it was either this reason or that I needed more tubing due to growing. Of course that stopped a long time ago. ;) He also told me that some patients have more malfunctions than others. I think I fall into that category.
Anyway. A revision is pretty much brain surgery and I *do* have a lot of scar tissue around my head and stomach but it is a relatively easy surgery, they just knock me out and after unclogging it put new tubing in. As I've gotten older it takes more out of me, but I am used to it.
I have to reschedule a CT scan that I am supposed to be having this week of my stomach end of the shunt, after that I will make another appointment with my current neuro. He told daisy and I that he doesn't want to do a revision every time he has a patient with a shunt complain of the symptoms (headache, mood changes, either sleeping too much or too little, vomiting, nausea, loss of appetite..) but that he knows that often CT scans don't show anything wrong (which is every single time, with me)
Until then I take Vicodin to dull the pain. I've had the symptoms since late May early June, so I hope something happens soon. I know my mom back in Alaska is worried, along with daisy and daisy's mom.
Well enough about me. I just wanna say that I am loving reading everyone's stories...sometimes it helps to know that you are not alone.
~SAB

[ravfem]

ok i have an ambien story too....

Like someone else said, i started taking it about 1/2 hour before i was ready for bed to give it time to kick in.

Well, one morning my house mate asked if i had heard the smoke alarm go off during the night. Nope, i said, and didn't think anything more about it.

Later as i was sitting at the computer, i noticed a big jar candle sitting on the floor in the corner of the room. i wondered why it was there and went over to get it. It was covered with black soot and had water in it, as well as bits of burnt paper. i sat there trying to figure out what was going on, and slowly memories started coming back....i remembered sitting at my desk, lighting the candle and holding paper over it. That's all i remembered.

i almost set the house on fire on ambien! Yeah, it got trashed quickly. A friend eats in his sleep when he takes it....wakes up with food wrappers and crumbs all over the bed but with no memory of doing it.

my doc switched me to amitriptyline (elavil) for insomnia, which works ok usually with no hangover effect. It's old as dirt and very cheap.

[Gayla]

So apparently my two day low hanging fog is mostly just due to allergies. :/

Had a post-surgical follow up with my ENT today and he walked in the door, took one look at me and said, "Happy Allergy Week!" When I told him I'd been foggy for a couple of day, in addition to the razor blades in my eyes and the runny nose, he told me grass pollen is really high and if my allergy is severe enough it can affect everything from concentration to cognitive kind of stuff.

Yay. He did call in scripts though and said I should be thinking more clearly in a day or two. (clearly? clearer? sigh)

I rarely like my docs much less love them as much as I love this guy. He just takes care of stuff without me having to beg and explain over and over again. Then again, he is the one who saved my butt when surgery went all wrong so I guess it's not all that weird to be madly in love with a doc who's probably the sole reason I'm still upright.

So, for all the foggy folks, check your pollen levels! :)

[Corkey]

Poor Gayla, if I had allergies to trees and grasses I would do as you and down some pills. I hope they help you very soon. My allergies are to foods, yea I eat stuff I really shouldn't but I got tired of bland. I can honestly say it's the fibro fog.
Have you tried an ice pack for your eyes in the meantime?

[Gayla]

Yeah, I did ice for a bit this morning and it helped but then had to go out in the world and all. He called in some drops and Flonase, I think. That should help.

It was just weird talking to him because I know I've been having issues the past couple of days with allergies but I really never made the connection. I mean, I have thyroid fog and I have fibro fog and I can usually tell the difference between them. It never crossed my mind that now I have hayfever fog to go along with both of those!

[Corkey]

Yeah, I did ice for a bit this morning and it helped but then had to go out in the world and all. He called in some drops and Flonase, I think. That should help.

It was just weird talking to him because I know I've been having issues the past couple of days with allergies but I really never made the connection. I mean, I have thyroid fog and I have fibro fog and I can usually tell the difference between them. It never crossed my mind that now I have hayfever fog to go along with both of those!

Yer a foggy mess. Feel better Gayla.

[SuperFemme]

For Gayla: I Love THIS (http://www.feelgoodstore.com/cgi-bin/feelgood/postkey_find.html?cm_mmc=channel-_-engine-_-media-_-072585&keywords=072585&media=GF0571&srccode=cii_9324560&cpncode=24-92683330-2) mask.
It makes allergies tolerable.

You should try it. :)

[Corkey]

For Gayla: I Love THIS (http://www.feelgoodstore.com/cgi-bin/feelgood/postkey_find.html?cm_mmc=channel-_-engine-_-media-_-072585&keywords=072585&media=GF0571&srccode=cii_9324560&cpncode=24-92683330-2) mask.
It makes allergies tolerable.

You should try it. :)

Wonder how it works on migraines?

[Gayla]

For Gayla: I Love THIS (http://www.feelgoodstore.com/cgi-bin/feelgood/postkey_find.html?cm_mmc=channel-_-engine-_-media-_-072585&keywords=072585&media=GF0571&srccode=cii_9324560&cpncode=24-92683330-2) mask.
It makes allergies tolerable.

You should try it. :)

That would be much better than laying around with a bag of frozen peas on my face!

[SuperFemme]

Wonder how it works on migraines?

it cures my migraines, i found that out after the fact.

That would be much better than laying around with a bag of frozen peas on my face!

it is amazing! not only can you freeze it, you can microwave it. often times for me, heat works far better on my sinuses. usually though? i switch between hot and cold during the day/night, because after the heat dilates the sinuses? the cold can better bring down the swelling. amazing.

[dixie]

sleeping has been an issue for me since my accident. i can usually get in a few hours at a time...

so my doctor gave me some sleeping aids. the first one? ambien? i totally freaked out, and my kids had to call cal over for help. i was apparently being ridiculous. know what? i do not remember a thing. needless to say, those meds went in the trash. next it was lunesta. same thing. trash.

i gave up on meds for a while, scared of having these "fugue" states where i act like a nut and everyone remembers it but me.

recently, in the hospital they gave me trazedone. which basically equates to a large dose of benadryl. it works, but i find it so hard to wake up...and my head is super foggy. so i only use when i am breaking down due to exhaustion. the rest of the time i take herbal sleep aids.

so yes. i feel for you corkey and can so relate.

here is some info on herbal/natural sleep remedies.

Nutritional supplements: 5-HTP (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2793000), Melatonin (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2883002)
Best herbal remedies: Valerian (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2179004), Corydalis (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2074006), Lavender (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2120003)
Other remedies: Chamomile (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2066005), Passion Flower (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2142002) and hops (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2108006)
Also look at: homeopathic remedies (http://www.ion.ac.uk/healthnotes.php?org=ion&ContentID=2258008), they are safe also for children
Dr Deepak Choprasuggests the following Ayurvedic remedies:
a cup of warm milk with two strands of saffron or some grated nutmeg


I so couldn't pass up the Ambien thing. My docs tried that out on me also. After 3 seperate incidents including: (1)waking up nekkid in the front lawn at 3am, (2)waking up nekkid behind the wheel of my car (luckily still in my driveway), and (3)waking up screaming from nightterrors and attacking the person trying to wake me...I have vowed to never touch that stuff again...ugh...

[SuperFemme]

I so couldn't pass up the Ambien thing. My docs tried that out on me also. After 3 seperate incidents including: (1)waking up nekkid in the front lawn at 3am, (2)waking up nekkid behind the wheel of my car (luckily still in my driveway), and (3)waking up screaming from nightterrors and attacking the person trying to wake me...I have vowed to never touch that stuff again...ugh...

yikes. what is amazing to me? is that it is still being prescribed. at all. with sleep eating/sleep driving alone? it is clearly too risky and dangerous to the point that the consequence could be very severe.

thank GOD you were safe after your naked adventures. seriously, you just made me get all mother hen protective about you. i would have to gather a differently abled posse and take out anyone that harmed you in that state of mind. (f)

[dixie]

yikes. what is amazing to me? is that it is still being prescribed. at all. with sleep eating/sleep driving alone? it is clearly too risky and dangerous to the point that the consequence could be very severe.

thank GOD you were safe after your naked adventures. seriously, you just made me get all mother hen protective about you. i would have to gather a differently abled posse and take out anyone that harmed you in that state of mind. (f)

Aww...thank you Mother Hen... ;) I could just imagine the posse you would put together. I can also imagine my utter mortification at being SEEN in such a state...gah! :| I'm glad I don't have neighbors. They would have been horrified by the sight of this nekkid girl running amok in the yard...or hopefully they would have just thought I was a very spiritual individual dancing to the Moon Goddess... :D

Seriously though... It's strange, because it affects my grandmother in similar ways, but my dad takes it with no problems at all. Personally I do think it is way too dangerous. I'm really glad that when I woke up in the car, at least I didn't have my keys in the ignition.

[SuperFemme]

Thought for the day: May we all find a little bit of what make Faith the Dog tick within ourselves today, and every day.


EqplI66cHsI

[FeminineAllure]

It takes me 400 mg tegretol, 1mg benztropin, 1mg fluphenazine, 300 mg seroquel, 1mg klonopin, 1 to 2 benadryl, 1 singulair and 40mg of cymbalta to get to sleep for a few hours. If my pain from fibromyalgia is bad then I also take 1 30 mg oxycodone.
I have been on every sleeping pill made. They do not work for me. Trazodone makes me do really strange things as well. never again.

[SuperFemme]

Today I feel afraid, and sick, and am losing hope. So I was perusing my journals and came across something that my therapist in brain injury rehab gave to me a little over seven years ago. I thought I'd share it with you all, since your kindness and woo have been what holds me up when I cannot: Sometimes, when it is all too much? I have to come back here and read this. I have to remember. In the process my ability to hope happens again. :tea:I hope it means as much to ya'll as it did to me. :rrose:


Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.

Love,
your wounded brain

©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.
Livetulaff@aol.com (%20Livetulaff@aol.com)
Contact me if
you have any questions or comments.

[MsTinkerbelly]

Woo:hangloose:

[SuperFemme]

Disability Issues

Disability Activists

In December 2000, the gay newsmagazine The Advocate published the results of a reader poll. One of the questions was, "Do you think people with disabilities are treated fairly within the gay and lesbian community?" In response, 58 percent of the readers answered, "No," while only 20 percent said, "Yes." Although informal and unscientific, the poll demonstrates a perceived failure to address disability issues within the glbtq community.

Terminology

The term "disabled" is used to describe a wide variety of conditions that limit or hinder a person's ability to perform tasks of daily living. Indeed, there has been extensive debate over what words should be used to describe persons with disabilities, ranging from the outdated "handicapped" to the more inclusive "differently abled."

Disabled activists have generally disliked calling their disabilities handicaps, arguing that their chief handicaps are the barriers an unresponsive society creates. These barriers include both physical obstacles to accessibility and attitudes of prejudice, condescension, and ignorance.

Early AIDS activists recognized the important connection between terminology and attitude when they worked to replace the patronizing term "AIDS victims" with the more empowering term "people with AIDS" or "PWAs." Some disabled activists have turned the tables by creating a label for those without disabilities, calling them "TABS" or "temporarily able bodied." This tongue-in-cheek description highlights the fact that most people are likely to experience some form of disability in the course of their lives.

Diverse Disabilities, Unifying Issues

Disabilities may be the result of genetics, medical disorders, accident, assault, or the aging process. Blindness, deafness, and paraplegia are lumped together under the umbrella term of disability, as are AIDS, chronic fatigue immune disorder syndrome, cerebral palsy, limb amputations, mental illnesses, and much more.

Obviously people with such a wide range of diagnoses have vastly different issues. Some, like the Deaf and many amputees, may not consider themselves disabled at all, because they have adapted so well to any limitations they may have. Deaf people, for example, have created their own language and culture.

However, there are issues that unite many people with disabilities, and primary among them is the issue of the right of control over one's own life. Central to achieving this control is resistance to the prejudice of ableism, which often views people with disabilities as pitiable and helpless.

Other important aspects of independence for those with disabilities are access to social services, including medical care and trained (though not necessarily medical) caretakers, and a societal commitment to making personal and public spaces accessible to all.

Like gay and lesbian activists, disabled activists have fought against being considered sick or defective and have demanded respect for their unique identities. Reclaiming words like "gimp" and "crip," which were once used to demean them, disabled activists demand equality rather than pity.

Queer Disability Issues

Disabled persons who are also queer (http://javascript%3Cb%3E%3C/b%3E:glossary%28%27queer%27,%27%27%29)queer (http://www.butchfemmeplanet.com/glossary.php?word=queer&part=) may find themselves doubly invalidated. On one hand, they face homophobia, (http://javascript%3Cb%3E%3C/b%3E:glossary%28%27homophobia%27,%27%27%29)homopho bia (http://www.butchfemmeplanet.com/glossary.php?word=homophobia&part=) within the medical and social service systems and often within their own families. In addition, the partners of gay men and lesbians with disabilities must frequently struggle for recognition of their relationship.

The case of Sharon Kowalski and Karen Thompson provides a powerful example of the difficulties faced by disabled queers who lose control over their own choices. When Kowalski was severely disabled in an automobile accident in 1983, she was placed in the custody of her homophobic parents, forcing Thompson to fight an extended legal battle to gain first visitation rights and then custody of her longtime lover. The Thompson-Kowalski case was a wake-up call to the queer community, both about disabled rights and about the temporary nature of physical health and ability.

On the other hand, disabled queers often find themselves invisible or marginalized within their own community. Accessibility to queer events and queer spaces is an ongoing problem. The problem persists because of ignorance about what is needed; and this ignorance stems from the separation between abled and disabled people within the gay community.

Many queers who do not have disabilities simply do not understand how many issues need to be taken into account to create accessibility. An event location may be advertised as wheelchair accessible because there are no stairs, yet the bathroom is too small to accommodate a wheelchair. American Sign Language interpreters may be engaged to interpret an event, but the event is not publicized within the Deaf community, so Deaf queers do not attend. A chemically sensitive lesbian may attend an event she believes will be accessible, but become ill from sitting behind someone wearing a perfume. Eventually, she may decide she cannot attempt to attend such events and, as a result, experience isolation.

However, many queers with disabilities have refused to remain silent. They have formed support networks, created publications, and become part of a larger radical disabled rights movement, demanding respect, independence, and accommodation from their own community as well as the larger society.

For example, queers are active in Not Dead Yet, a militant disabled rights group that opposes the assisted suicide movement because it devalues the lives of those with disabilities. Groups such as Blind Friends of Lesbians, Gays, Bisexual, and Transgender People (BFLAG) and the Rainbow Alliance of the Deaf offer support and connection for queers with particular disabilities.

In queer communities everywhere strong disabled activists work in many different ways to counter ableist attitudes and promote inclusivity. In Montreal, for example, activists have raised awareness about queers with disabilities by confronting the lack of accessibility in such venues as Image and Nation, the Montreal gay and lesbian film festival, and l'Androgyne, the city's queer bookstore.

In 1996, Sergeant Sharon Fitzpatrick Smith founded the Lesbian Disabled Veterans of America, which later became the Gay, Lesbian, Bisexual, and Transgender Disabled Veterans of America. Another activist, Peter Little founded San Francisco Gay Amputees in 2006.

Disabled gay performance artist Greg Walloch puts an elfishly raunchy face on disability issues in his sharply satiric comic act. Walloch's life and work are the subject of a 2001 film by Eli Kabillio: Keeping it Real: The Adventures of Greg Walloch.

Queer disability activists have also started publications to offer support and a public voice to those who have long been isolated and invisible within the glbtq community. San Francisco's Dragonsani Renteria, a Deaf queer trans activist has been instrumental in the formation of the National Deaf Queer Resource Center and Flash, a webzine for Deaf queers which began publication in 1994. Bent: A Journal of Cripgay Voices is a bi-monthly ezine "by and for cripgay men." The journal, founded in 1999 by Bob Guter, celebrates the full lives of gay men with disabilities, including news, community, and sexuality.

In addition, listserves abound where glbtq people with a wide range of disabilities can share their experiences with others who are coping with similar problems and where caregivers and allies of the disabled can also find information and support.


http://www.glbtq.com/social-sciences/disability_issues.html

[FeminineAllure]

Prepared by the Texas Council for Developmental Disabilities.

Note: I prefer the term "Differently Abled" but despite this article using the word "Disabled" instead I felt it still made some very valid points.


Describing People with Disabilities
Who are People with Disabilities?
People with disabilities are -- first and foremost, people -- people who have individual abilities, interests and needs. For the most part, they are ordinary individuals seeking to live ordinary lives. People with disabilities are moms, dads, sons, daughters, sisters, brothers, friends, neighbors, coworkers, students and teachers. About 54 million Americans -- one out of every five individuals -- have a disability. Their contributions enrich our communities and society as they live, work and share their lives.

Changing Images Presented
Historically, people with disabilities have been regarded as individuals to be pitied, feared or ignored. They have been portrayed as helpless victims, repulsive adversaries, heroic individuals overcoming tragedy, and charity cases who must depend on others for their well being and care. Media coverage frequently focused on heartwarming features and inspirational stories that reinforced stereotypes, patronized and underestimated individuals' capabilities.

Much has changed lately. New laws, disability activism and expanded coverage of disability issues have altered public awareness and knowledge, eliminating the worst stereotypes and misrepresentations. Still, old attitudes, experiences and stereotypes die hard.

People with disabilities continue to seek accurate portrayals that present a respectful, positive view of individuals as active participants of society, in regular social, work and home environments. Additionally, people with disabilities are focusing attention on tough issues that affect quality of life, such as accessible transportation, housing, affordable health care, employment opportunities and discrimination.

Eliminating Stereotypes -- Words Matter!
Every individual regardless of sex, age, race or ability deserves to be treated with dignity and respect. As part of the effort to end discrimination and segregation -- in employment, education and our communities at large -- it's important to eliminate prejudicial language.

Like other minorities, the disability community has developed preferred terminology -- People First Language. More than a fad or political correctness, People First Language is an objective way of acknowledging, communicating and reporting on disabilities. It eliminates generalizations, assumptions and stereotypes by focusing on the person rather than the disability.

As the term implies, People First Language refers to the individual first and the disability second. It's the difference in saying the autistic and a child with autism. (See the following.) While some people may not use preferred terminology, it's important you don't repeat negative terms that stereotype, devalue or discriminate, just as you'd avoid racial slurs and say women instead of gals.

Equally important, ask yourself if the disability is even relevant and needs to be mentioned when referring to individuals, in the same way racial identification is being eliminated from news stories when it is not significant.

What Should You Say?
Be sensitive when choosing the words you use. Here are a few guidelines on appropriate language.

Recognize that people with disabilities are ordinary people with common goals for a home, a job and a family. Talk about people in ordinary terms.
Never equate a person with a disability -- such as referring to someone as retarded, an epileptic or quadriplegic. These labels are simply medical diagnosis. Use People First Language to tell what a person HAS, not what a person IS.
Emphasize abilities not limitations. For example, say a man walks with crutches, not he is crippled.
Avoid negative words that imply tragedy, such as afflicted with, suffers, victim, prisoner and unfortunate.
Recognize that a disability is not a challenge to be overcome, and don't say people succeed in spite of a disability. Ordinary things and accomplishments do not become extraordinary just because they are done by a person with a disability. What is extraordinary are the lengths people with disabilities have to go through and the barriers they have to overcome to do the most ordinary things.
Use handicap to refer to a barrier created by people or the environment. Use disability to indicate a functional limitation that interferes with a person's mental, physical or sensory abilities, such as walking, talking, hearing and learning. For example, people with disabilities who use wheelchairs are handicapped by stairs.
Do not refer to a person as bound to or confined to a wheelchair. Wheelchairs are liberating to people with disabilities because they provide mobility.
Do not use special to mean segregated, such as separate schools or buses for people with disabilities, or to suggest a disability itself makes someone special.

Promote understanding, respect, dignity and positive outlooks.
"The difference between the right word and the almost right word is the difference between lightning and the lightning bug." Mark Twain

What Do You Call People with Disabilities?
Friends, neighbors, coworkers, dad, grandma, Joe's sister, my big brother, our cousin, Mrs. Schneider, George, husband, wife, colleague, employee, boss, reporter, driver, dancer, mechanic, lawyer, judge, student, educator, home owner, renter, man, woman, adult, child, partner, participant, member, voter, citizen, amigo or any other word you would use for a person.


--------------------------------------------------------------------------------

People First Language
People First Language recognizes that individuals with disabilities are - first and foremost - people. It emphasizes each person's value, individuality, dignity and capabilities. The following examples provide guidance on what terms to use and which ones are inappropriate when talking or writing about people with disabilities.

People First Language to Use Instead of Labels that Stereotype and Devalue

people/individuals with disabilities
an adult who has a disability
a child with a disability
a person

Instead of: the handicapped
the disabled


people/individuals without disabilities
typical kids

Instead of: normal people/healthy individuals
atypical kids

people with intellectual and developmental disabilities
he/she has a cognitive impairment
a person who has Down syndrome

Instead of: the mentally retarded; retarded people
he/she is retarded; the retarded
he/she's a Downs kid; a Mongoloid; a Mongol

a person who has autism

Instead of: autistic

people with a mental illness
a person who has an emotional disability
with a psychiatric illness/disability

Instead of: the mentally ill; the emotionally disturbed
is insane; crazy; demented; psycho
a maniac; lunatic

a person who has a learning disability

Instead of: he/she is learning disabled

a person who is deaf
he/she has a hearing impairment/loss
a man/woman who is hard of hearing

Instead of: the deaf


person who is deaf and cannot speak
who has a speech disorder
uses a communication device
uses synthetic speech

Instead of: is deaf and dumb
mute

a person who is blind
a person who has a visual impairment
man/woman who has low vision

Instead of: the blind


a person who has epilepsy
people with a seizure disorder

Instead of: an epileptic
a victim of epilepsy

a person who uses a wheelchair
people who have a mobility impairment
a person who walks with crutches

Instead of: a person who is wheelchair bound
a person who is confined to a wheelchair
a cripple

a person who has quadriplegia
people with paraplegia

Instead of: a quadriplegic
the paraplegic

he/she is of small or short stature
a dwarf or midget

he/she has a congenital disability

Instead of: he/she has a birth defect

accessible buses, bathrooms, etc.
reserved parking for people with disabilities

Instead of: handicapped buses, bathrooms, hotel rooms, etc.
handicapped parking


What Do You Call People with Disabilities?
Men, women, boys, girls, students, mom, Sue's brother, Mr. Smith, Rosita, a neighbor, employer, coworker, customer, chef, teacher, scientist, athlete, adults, children tourists, retirees, actors, comedians, musicians, blondes, brunettes, SCUBA divers, computer operators, individuals, members, leaders, people, voters, Texans, friends or any other word you would use for a person.

[SuperFemme]

I love this post FA...
I know for a fact hat my momma was a big poopie liar head when she told me to "ignore" asshats.

Sticks and stones may break your bones, but words can never hurt you.

W-H-A-T-E-V-E-R!

It's not true! Words - and particularly, the energy forms transmitted through those words - CAN hurt a person, for longer and for much, much worse than sticks and stones ever could.


The broken bones heal, the cut in the head from the stone becomes a scar over time, but unless you know what you are doing, a single word can RUIN a person's entire life, and not just that, can ruin the lives of others they might touch in turn.

Here is why.


We all have an energy body, whether we know this or not, and whether we like this to be true, or not.


This energy body is obviously made from energy, and sticks and stones cannot hurt this energy body, they can't even touch it - they would woosh right through it, like you would see with a ghost.


However!


The energy behind a word that is thrown at the energy body can and does HIT the energy body, hard, and it can cause energy injuries there.


And it does.


I don't know any person alive who hasn't been hurt by words more than we can even say.


"You're ugly!"
"I don't love you any more!"
"Get out of here!"
"You're fired!"
"You are a loser!"
"I hate you!"

[Rockinonahigh]

Being difrentlyabled has been a chalenge for me big time since I reinjured my back in 2007.Till then I pretty much did what I wanted even tho it was a little diffrent in how I did it before.Normal ppl at first just gave me the hurry up and get moveing look,my reply has been yall keep going I will get there about the same as u.Then I reinjurd the mess and have messd up the nerves in my back that controle my left side from the mid back to my foot,somedays im real good then I relaps cause I over do then the gimpy walk is back till it works itself out.I have another dr.s appointment on the 28th of next month with the docs to deside what to do about this,I have been waithing to have this appointment for a long time as its taken 3 more months to see them after trying for the last two years to get to this point.My situation now is I have goten a job finaly at a local hospital (desk job) thrue the Aunda group and they have a rule about missing four days of work in a row..if I do I may lose my position at work.Also I have been going threw rehab wich has desides I prolly wont need surgery bit some other treatment for keeping me on my feet and working..I hope.My bigest thing at the moment im on the down side of a flair up but is geting better daily even if I still have some pain that a pain patch dose a pretty good job of helping even tho it dosent do a thing about my creeky squeeky joints when I stand up and take the first fue steps (5 or 10) its like everything pinches at onece..this wont effect my job performance but moblity to some degree.For the most part I have been giveing them the sore body weekend warrior thing of wich they have havent had a prob with.They know im disabled in some way but werent allowed by law to ask me about and I didnt have to tell either..my deffness is well known cause I wear aids.Sofar all ive been doing is takeing it one day at the time since last thurdsay when I started orentation and all the pre job stuff I slso got paid for wich is nice to know.I just hope the docs dont sugest I do anything that will cause me a prob with this job.

[Lady Pamela]

I'm backkkk..lol

I will not mention any names but I stopped frequenting the site due to some people on here who didn't understand my diffrent abilities. I felt put asisde by being corrected and constantly told I was spelling things wrong. Also it was mentioned I sure have alot of times I get hurt.

Soooo....I am back and I will better explain how I Roll...smiles
In short of course...lol


I have a disorder that creates the blood to pool to the bottom part of my body..which starves my brain, heart and other organs from recieving blood and oxygen.

This creates moments of slow thought process "which I deal with and laugh at" and also makes me pass out or fall alot. Thus why I get hurt alot. "Also something I get up and laugh at myself for. After the fact that is."

It also creates a short term memory issue at times which comes back when I lay down or when I am not having a flare.

It sometimes makes me spell things wrong or leave out letters as well. This is something I used to pride myself in but now I simply just have to correct my mistakes when I see them. And again add it to the list of things to laugh at.

Along with this I have Fibromyalgia which holds alot of the same symptoms.
Except for pain is associated with it at times.
I have learn't to handle both well but others often don't understand why I do what I do.

I work hard at keeping stress under tabs because this can set both off.

I know I don't have to explain myself to anyone here but perhaps next time I type something wrong or forget something common...maybe this will help to show why and it won't be an issue anymore for others.

Just because one doesn't spell right or remember on the mark..does not make them stupid....They may come back one day in a post...and blow your mind with what they know and have hidden...Just saying


SMILES...Have a nice day.

[FeminineAllure]

Welcome back Lady Pamela!

I have fibromyalgia and bipolar and possibly MS. My memory is not good as well.
It is not your spelling I have ever noticed but the depth of your posts and what you have to share.
People jump to conclusions too often I feel. There is a real person behind the keyboard with real feelings and a personal history that people online are not always aware of that make up the whole person.
We have some good days and some not so good. That goes for everybody not just those that are differently abled.

[SuperFemme]

Lady Pamela? I'm jumping all over you and giving you a giant hug.

In this thread you get to forget your name, spell everything you can wrong, and forget whey you came in here in the first place.

When I say "Fly Your Freak Flag High" I mean that it is the unique things about you that you should be proudest of here. You are not alone.

As the D/A Ambassador, you come and tell me immediately if someone mocks you or tries to make you feel small. You are ten feet tall here and as safe as a Lady can be on the internet, yanno?

The Planet works really hard to ensure that for our population. I have moderation powers. However; I will always approach a person who clearly doesn't know that what they are saying is like opening the door of a yoga center and letting loose a pack rabid dogs.

Mind you I cannot force a person to possess empathy or compassion. As we come out of the shadows of the differently abled, the wolves are going to follow too. I'd love to say ignore them but we know that is not possible. So tell one of us and we shall shield you.

Fibromyalgia flare ups are bad enough without over thinking what you need to talk about.

In my perfect world, once I know something I say is disparaging to another human being? I simply won't say it. Not out o censorshipn. Rather, out of love.

In fact, I'd love to say and type more but I am just too ill today. Please don' say away Lady Pamela. You com right on in here, spell bad, forget my name and what day it is and let the blood pool wherever you wan.

Sorry, I'm just to high temped to continue. Please keep coming here. You are wanted here and welcomed and loved. Oh, and my hospital now has the wi-fi.

I
am
a
little off.

So hugs, kissed,and stuff. See you all soon.

If I don't nap i will end up either shooting Sara Maclauhhlin ot marry Michael Vick.

hold me.

[Corkey]

I'm one of the worst spellers around. My wife can attest to that, so don't worry about if you get the words mixed up, spelled wrong or just dropped altogether. WE understand you. It's the same crap from the same ones who have issues with themselves. It is their problem not yours.

The power of the report button is there for a reason, so you can still have your voice, it is just as important as anyone else's.

[AtLast]

Just doing a lot of thinking about the fact that it is time for me to look at alternative geographic locations in terms of disability. Who needs to be more cloudy on medication when a change would most likely mean less disability to medicate?

Funny, how it feels entirely different when these kinds of thoughts change from just thoughts that "might" lead to an action and starting to take action even if just preliminary planning of what has to happen to move onto another stage in life.

I feel like I do pretty well overall, but I am a lot more willing to make changes to regain some of what I have lost. I realize, I do have choices that can make a difference even if they are difficult. This is really starting to feel freeing! KEWL!!!

[Blaze]

I can't believe I didn't find this thread sooooo way earlier!
I'm gonna raise my Flag. Let's see, I think it is now 7 or perhaps 8 yrs since my motorcycle accident. To which I don't remember, but was told how bad it really was. I was hit from the side by a semi, thrown a long distance and impaled by a tree branch through my skull. If not for a passer by driver, I most likely would have died.

I had went through rehab to learn to talk, walk, eat and all the other good things that come with rehab. I have lost much of my memory, sometimes I am lucky and one appears, but then I can't make a distinction of if it's mine or a movie. Either way, I have come to some grips and understanding, not taking it so hard as I use to. Being mean to my own self. Then taking it out on others.

Within the last 2 years I have been having seizures, doctor told me years ago that I would more than likely die from a blood clot loosening from my brain and heading towards my heart. I have been on all kinds of seizure medications, as well as alway taking the trial meds to see if they work. Sometimes work, sometimes it doubles the suizures. Right at this moment, I am on meds again to help reduce the blood clots in my brain. My most hated moments are the carrying a conversation then stopping in mid sentance and just staring. Pisses me off all the time. But my co-workers always cover for me. Oh well, before I bore you all, I will close with this thought....... We are better people that actually see our world in a new and different way.

Clotting away, Blaze

[Leigh]

http://i303.photobucket.com/albums/nn127/ashley7hailey/able.gif


we are ALL able http://i1237.photobucket.com/albums/ff476/Angelsoft36/Smilies/sHa_yay.gif

[Rockinonahigh]

Lady Pamela,dont give it a thought about the spelling,I have dislexia.I drop letters,forget names and absolutly nun to little concep of number without a calculater as well as droping out of convos for a bit cause I get like a vidio tape on static for a fue seconds..mostly under stress.U have no ideas how many times I check what I post but often I sitll dont catch the goofups.All is well hear for all of us.

[Lady Pamela]

For all of you who responded with such care!

I really appriciated it ! Even gave me the warm fuzzies...smiles

It was a kodak moment for sure...Ha

Thank you again!


http://c.editingmyspace.com/files/en/hugs/hug_080.gif