Differently Abled (fly your freak flag high)

[Plato]

Originally Posted by SuperFemme

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]

Originally Posted by SuperFemme

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


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...

[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]

Originally Posted by 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

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, Melatonin
Best herbal remedies: Valerian, Corydalis, Lavender
Other remedies: Chamomile, Passion Flower and hops
Also look at: homeopathic remedies, 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.
~SAB

[SuperFemme]

Originally Posted by 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.
~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]

Originally Posted by SuperFemme

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!