Differently Abled (fly your freak flag high)

dixie · 06-23-2010, 09:07 PM

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 · 06-23-2010, 09:15 PM

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 · 07-19-2010, 04:16 PM

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 · 07-19-2010, 04:30 PM

Quote:

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

dixie · 07-20-2010, 08:14 PM

Quote:

Originally Posted by SuperFemme

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

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 · 07-20-2010, 08:19 PM

Quote:

Originally Posted by dixielady

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.

dixie · 07-20-2010, 08:58 PM

Quote:

Originally Posted by SuperFemme

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.

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...

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.

Gayla · 07-19-2010, 04:31 PM

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 · 07-19-2010, 04:38 PM

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 · 07-19-2010, 04:39 PM

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 · 07-19-2010, 05:10 PM

Quote:

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 · 07-19-2010, 05:33 PM

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.

SimpleAlaskanBoy · 07-19-2010, 05:51 PM

Quote:

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

07-19-2010, 04:16 PM	#3
Corkey Infamous Member How Do You Identify?: Human Preferred Pronoun?: He Relationship Status: Very Married Join Date: Dec 2009 Location: Where I want to be Posts: 8,155 My Photo Gallery Thanks: 47,491 Thanked 29,268 Times in 6,637 Posts Rep Power: 21474859	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 __________________ "Many proposals have been made to us to adopt your laws, your religion, your manners and your customs. We would be better pleased with beholding the good effects of these doctrines in your own practices, than with hearing you talk about them". ~Old Tassel, Chief of the Tsalagi (Cherokee)

07-19-2010, 04:38 PM	#9
Corkey Infamous Member How Do You Identify?: Human Preferred Pronoun?: He Relationship Status: Very Married Join Date: Dec 2009 Location: Where I want to be Posts: 8,155 My Photo Gallery Thanks: 47,491 Thanked 29,268 Times in 6,637 Posts Rep Power: 21474859	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. __________________ "Many proposals have been made to us to adopt your laws, your religion, your manners and your customs. We would be better pleased with beholding the good effects of these doctrines in your own practices, than with hearing you talk about them". ~Old Tassel, Chief of the Tsalagi (Cherokee)

06-23-2010, 09:07 PM	#1
dixie Infamous Member How Do You Identify?: I usually just poke it with a stick. Preferred Pronoun?: Bitch Relationship Status: Intertwined deeply Join Date: Nov 2009 Location: We're all a little mad here. Posts: 6,627 My Photo Gallery Thanks: 10,972 Thanked 21,383 Times in 4,808 Posts Rep Power: 21474859	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...

06-23-2010, 09:15 PM	#2
dixie Infamous Member How Do You Identify?: I usually just poke it with a stick. Preferred Pronoun?: Bitch Relationship Status: Intertwined deeply Join Date: Nov 2009 Location: We're all a little mad here. Posts: 6,627 My Photo Gallery Thanks: 10,972 Thanked 21,383 Times in 4,808 Posts Rep Power: 21474859	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...

07-19-2010, 04:31 PM	#8
Gayla Timed Out How Do You Identify?: Kinky Butch Top Preferred Pronoun?: I'm not picky Relationship Status: She makes me dance like a fool and forget how to breathe. Join Date: Mar 2010 Location: SF CA Posts: 3,229 My Photo Gallery Thanks: 877 Thanked 7,077 Times in 1,966 Posts Rep Power: 0	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.

07-19-2010, 04:39 PM	#10
SimpleAlaskanBoy Member How Do You Identify?: Bisexual trans guy Preferred Pronoun?: He Relationship Status: Daddy to a sweet daisy. Join Date: Mar 2010 Location: O-H-I-O Posts: 410 My Photo Gallery Thanks: 1,426 Thanked 1,010 Times in 295 Posts Rep Power: 5996528	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

07-19-2010, 05:33 PM	#12
Gayla Timed Out How Do You Identify?: Kinky Butch Top Preferred Pronoun?: I'm not picky Relationship Status: She makes me dance like a fool and forget how to breathe. Join Date: Mar 2010 Location: SF CA Posts: 3,229 My Photo Gallery Thanks: 877 Thanked 7,077 Times in 1,966 Posts Rep Power: 0	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.