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Home » Discuss » Topic Forums » Disability Donate to DU
 
fugue Donating Member (846 posts) Send PM | Profile | Ignore Sat Nov-13-04 10:18 AM
Original message
Disabled DUers check in!
I know you're here!

I've got Asperger's syndrome, and I telecommute, thanks to a great boss. I did lose my last job, though, because of my disability (then undiagnosed, so they thought I was making it all up).

Who are you?
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Modem Butterfly Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:19 AM
Response to Original message
1. My partner is hard-of-hearing and I have lupus
But I'm not currently disabled. Do I count?
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WestHoustonDem Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:23 AM
Response to Reply #1
2. I have Crohns and Fibromyalgia
Edited on Sat Nov-13-04 10:24 AM by WestHoustonDem
But life is manageable this week. Does that count?
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Modem Butterfly Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:29 AM
Response to Reply #2
3. :-)
Fibromyalgia sucks. There's so much disinformation out there about it, it must be a real pain. I have a friend with FMS and every time she tells someone she has it, it's 50/50 whether they'll tell her it's a "made up" disorder. When people find out I have lupus, no one says anything like that to me.
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WestHoustonDem Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:38 AM
Response to Reply #3
6. I hardly ever talk about the FMS because of that
And with Crohns, people either never heard of it or look at you as if you're they're afraid going to die while they're watching.

Were you able to get a flu shot? I got lucky and was at the doctor the day before the Chiron news came out so I got mine easily. My parents who also have auto-immune disorders finally got theirs this week.
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Modem Butterfly Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:41 AM
Response to Reply #6
9. Nope - so far, I seem to have a "mild" case of lupus
I haven't had a flare in nearly a year (knock wood). My rheumy is so confident that he scheduled my next check-up for spring (of course, I can see him sooner if I think I'm having a flare). I have had people ask me if lupus is contagious, and at least one person said, "So, like, you can't wear silver?"

:wtf:
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tango-tee Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Feb-06-10 08:31 AM
Response to Reply #9
239. Aarrrgh!!!
I'm not a very patient person to begin with, and my response to these benighted folks would be: No, goddamnit, I like can't wear silver, because all I wear is platinum and diamonds, you stupid f**k.

If it weren't so infuriating, wouldn't you want to just :rofl: or else :banghead: and if all else fails :dunce:

Now let me go and put some ointment on my swollen joints. That way I don't have to go around kicking people square in the ass.
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teakee Donating Member (91 posts) Send PM | Profile | Ignore Tue Feb-08-05 11:57 PM
Response to Reply #3
121. I have fibro and myofascial pain.....
along with a screwed up back. Plus all the little 'goodies' that fibro/myofascial brings. Anyone that thinks it is made up, may have my body for one week. I need a freakin' break.......honestly, I wouldn't wish this on anyone.

Who doesn't like feeling they are 80 years old (when they are only in their forties) and run over by a truck? :hurts:
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frankly_fedup2 Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-28-05 12:55 AM
Response to Reply #121
145. I was diagnosed with fibromyalgia 4 years ago and am on disability.
I tried to continue to work but it was impossible.

I wear a Morphine (Duragesic) Patch and have Vicodin for break-through pain. I also have panic disorder, chronic depression, and then basic medical problems like hypothyroidism. I get cortisone shots in my arms because of chronic carpal tunnel and chronic epicondylitis bilaterally. Also in my neck and shoulders. They won't do surgery on my carpal tunnel or epicondylitis due to the fibro. I have been to two orthopaedists as well as a rheumatologist and they all agree regarding the surgery. So I use ice packs to bring down the swelling when it gets really bad. I cannot type too long as well. I usually do my posts for any boards, especially DU, in my notepad program, save it, go back to it when I sit back down, type a little more, and so on. I guess that is why my posts tend to be lengthy and always kill a thread. I'm must be giving too much information or someone would reply to my posts.

My doc that was providing me with pain meds moved to Washington, D.C. and I was hysterical. She referred me to a group of docs that was over an hour and a half drive from my home. I have to get my father to drive me anywhere out of my comfort area (panic attacks), and he is 76 years old. They "supposedly" were starting a therapy treatment of 4 weeks (not inpatient either). I smoke and that was one of the things that would have to go. They refused to refill my Morphine but the doc gave me a "complimentary refill" on my Vicodin. Gee Thanks. On this program, no one could be on pain meds. I told them as for in the beginning, there would be no way I could accomplish that.

I then went to my PCP, who I knew would never give me a narcotic; however, I explained the situation, and low and behold, he has agreed to prescribe my pain meds. If he hadn't, I do not really know if I could live with the constant,99% intolerable pain. Dr. Kavorkian (Dr. Death) actually helped a fibro patient. Scarry Stuff, huh.

Before I went to my PCP, I was trying to taper off my morphine, and my blood felt like it was on fire all over my body. I could not stand to have my skin touched. The sheets felt like road burn on my back. I cannot function without some kind of help to get my pain to a point that it is tolerable. I may be fine today (you always hurt though. Just because I'm moving around does not mean I am not in any pain. It just means my pain is tolerable at that moment). I usually get 3 days a month that I am fairly comfortable. I try to accomplish something. It's usually the second day of a 3-day patch. Well, except the week we get bloated and all that fun stuff. That week alone is rough.

If you're able to sleep, you don't know if tomorrow you will be able to move, be in the bed most of the day eating pain pills and sleeping, or possibly be able to take a shower without too much additional pain. You can never plan anything because you never know how you are going to feel. My husband and I cannot even try to plan a vacation anymore. It's a disease that takes control of every aspect of your life. . . but what disease isn't?

I found another program that was an hour away and my PCP approved of my trying that one out. I went and talked to the psychologist, occupational therapy, physical therapy, and the nurse in the program that was like the nutritionist No one called me back so I finally called them and got the psychologist. She told me the "team" did not feel I was a good candidate and didn't want to waste my time nor theirs. HUH? (luckily) I have excellent insurance with Medicare, plus my husband makes decent money so my co-pays were no problem. (however, due to what my husband makes, I have to pay taxes out of my disability check every month). I couldn't believe it! I told the psychologist that I was amazed that any hospital would turn down a patient with good insurance from any program because that is the first question the receptionist or secretary for the office asks you before you show up because; basically, if you do not have insurance, they won't even make an appointment with you and tell you to try a free clinic or something. I asked her if the program took people on Medicade or no insurance at all. She said there are many people they have taken into the program that did not have any insurance; however, they had the means to pay for it. Now does that make sense?????? She told me that the program was a total lifestyle change and I never told any of them what my goals were. I told her that to be honest, no one asked me what my goals were and, frankly, I didn't feel the need to discuss it as I thought it was common sense what my goals would be. Well, she was becoming irritated so I just asked her to send a letter to my PCP.

To be totally honest . .this so-called psychologist made me feel like I had no hope of ever having any improvement. Like I was a hopeless case that they didn't want to waste THEIR time on. I mean G-d give me at least a chance to fail.

Sorry this so long but I figure if I get all of this out now, save it, then in the future on the posts, I can pull up whatever I need to post so less typing on my part.

I do want to warn other fibro sufferers out there about what I have learned from the synopsis of both of these programs and to be honest, they are going backwards with fibromyalgia and how they look at it. It is going back to the "mind over matter" therapy and belief. A lot of my pain is possibly psychosymatic (I'm told). Remember that word years ago about old people who complained of pain or other ailments and they were called ------- HYPOCHONDRIACS -------- Well, fibro patients are starting to be looked at and treated that way; especially with these new treatment programs.

As far as when people ask about my disability, I tell them I have Sjjogren's syndrome (which is what I think I really have anyway -- sorry about the spelling). When they ask what that is, I tell them it is a muscle/tissue disorder that causes chronic pain in the tissue that is in between all the muscles in my body. After that, no more questions and I honestly felt I have told them the truth.

CHAPTER 2 (just kidding :-) )

Hope tomorrow is a tolerable day for everyone.
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Katidid Donating Member (310 posts) Send PM | Profile | Ignore Wed Nov-19-08 08:49 AM
Response to Reply #145
223. Gee, Sounds like you read my personal journal
Fibromalgia, Thyroid radiated, PTSD, insomnia, panic attacks, high blood pressure, agoraphobia, Migraines, and on and on.

The SSD Administrative Law Judge gave me a "bench decision" in my favor, and back dated it 5 years. She was pretty hopping angry that it took so long for my case get before an SS ALJ and that my case should have been settle sooner.

Dr has me on Cymbalta and Lyrica for pain and numbness - won't give me anything for breakthrough pain. Am also on Klonopin, Metoprolol, Synthroid, Lunesta, Dolgic. That's it. I don't know how to convince him I need something for breakthrough pain.
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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:35 AM
Response to Reply #2
5. Please read the applicable paper here.... there is something here for
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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:29 AM
Response to Reply #1
4. Not disabled but wish you would read the following.....
This may sound a bit wierd.... but the science behind it is solid.

http://www.glyconutrients-facts.com/lupus.html

>>I now knew that I needed some serious help. On my face in my living room (couldn't walk anymore) I cried out to God to either help me, or take me because I couldn't care for my family anymore. This was the lowest point in my life.

That very week, my chiropractor, Dr. Chris McLean, told me about glyconutrient products. He explained how unlike drugs that cover the symptoms, the glyconutrient products support our bodies nutritionally, so that the body can FIX itself! Sounded like an answer to me, so I started taking glyconutrients, phytonutrients and the dioscorea product.<<
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DemBones DemBones Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 11:18 AM
Response to Reply #4
15. Not being disabled, you have no idea how often we hear this stuff.

Everybody thinks they have a cure for us. . . :eyes:

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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 12:36 PM
Response to Reply #15
17. Only going by the data from the ones who have been relieved... course,
it could have all been in their heads. For the ones who legitimately had a serious health condition that was corrected by sugar based nutritional interventions... well... what can you say. I know for a fact that this approach works more often than not.

http://www.glyconutrients-facts.com/lupus.html
>>"In 1989, I started becoming very ill and was diagnosed with a number of autoimmune diseases including lupus, degenerative discs, fibromyalgia, ulcerative colitis, Crohn's disease, bursitis and nerve damage (myopathy).

I was in constant pain and on lots of medications. I remember just crying because I couldn't even pick up my grandchildren -- it was so painful.

In 1996 it became much worse. In January I read about a talk on glyconutritionals and I just knew I had to listen to it. I attended and decided to try it.

Over the months I had more energy, cut back on my medications, and felt less pain. It kept getting better and better.

These products have given me my life back. I'm now back to doing my normal thing. I don't take any medications. I haven't had to go to the doctor for the past 3 1/2 years!".

--- Ann<<
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jcappy Donating Member (101 posts) Send PM | Profile | Ignore Sat Nov-13-04 05:23 PM
Response to Reply #17
19. food sources of glyconutriets???
105 bucks a month is far beyond most disabled persons'needs (limited and/or fixed income).

or minimally, could they offer a money-back guarantee?



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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 07:50 PM
Response to Reply #19
23. I know of a way that a person may be able to "create" some of their own
found it in Australia... I can check for the link if you want... also... there have been some reports of NADH helping out considerably... let me check... some of these supplements are quite inexpensive... and certainly safe to try. I have used MSM in the past... it is very inexpensive but the literature on it abounds.

http://search.lef.org/src-cgi-bin/MsmFind.exe?QUERY_ENC...

Msm (Methyl Sulfonyl Methane), 1000 Mg 100 Capsules
...Reference For Health Concerns Fibromyalgia: Online Reference For Health Concerns ...
Nadh (Nicotinamide Adenine Dinucleotide), 5 Mg 30 Tablets
...Reference For Health Concerns Fibromyalgia: Online Reference For Health Concerns ...
Pregnenolone, 50 Mg 100 Capsules
...Reference For Health Concerns Fibromyalgia: Online Reference For Health Concerns ...
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jcappy Donating Member (101 posts) Send PM | Profile | Ignore Sat Nov-13-04 09:17 PM
Response to Reply #23
24. yes, please do... am more than curious
MSM and Pregnenalone are cheap, but not new to most of us. NADH is excellent, I think, but expensive.

Life Extension may be a fairly good info source, but I have found their products to be far too expensive. Prefer a company like Puritan's Pride--their products always pass all tests with good grades too.



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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 09:24 PM
Response to Reply #24
25. Try The VitaminShoppe too... great selection.. good sales often... link
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GeorgeBushytail Donating Member (862 posts) Send PM | Profile | Ignore Sun Nov-14-04 08:38 PM
Response to Reply #25
35. Please post another thread
This thread is totally unreadable now because of off-topic posts.

I want to meet other disabled DUers but if this becomes a "help the poor disabled people" forum I'm not interested.

And, yes, I am grouchy tonight. Deal with it.

;^)
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-15-04 05:51 PM
Response to Reply #35
41. thank you for calling the thread back for us, GeorgeBushytail.
glad to meet you.


peace!
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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 09:25 PM
Response to Reply #24
26. Got it.... link
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jcappy Donating Member (101 posts) Send PM | Profile | Ignore Sun Nov-14-04 12:27 PM
Response to Reply #26
32. thanks for the link--just what i wanted
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indigobusiness Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 12:25 PM
Response to Reply #24
47. Swanson's is good, too. Save ton's of money on quality products.
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DemBones DemBones Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:56 PM
Response to Reply #17
27. Sorry, I know you have good intentions, and I will look at the site.

Please understand that we do get lots of people telling us what to do and that gets very frustrating.
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REP Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-25-04 08:50 AM
Response to Reply #15
96. Cure Us? Ha! They Just Want Money, and Will Tell Any Lie To Get It
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frankly_fedup2 Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-28-05 01:48 AM
Response to Reply #96
146. Yeah right. I agree with you REP. If someone says they were cured of
fibromyalgia, they were misdiagnosed in the first place. There is no cure as of yet. Hopefully one day.

Every doctor I have seen has told me I will have this pain until I die, it never goes away, and a lot of people get to a point that sometimes they have complete nervous breakdowns due to inability to cope with the pain.

I'm glad supplements have worked for some people; however, there isn't a supplement made to cure fibro. They may ease the pain; however, the pain is always there.

Also, I was always told to get the vitamins through my diet, the original vitamins from the food rather then supplements.

Please don't be offended, and I'm not saying that you are anything but sincere, I'm just sharing my experience as well as what my physicians have told me.

I truly mean no disrespect to your opinion or your helpful ideas. I am just giving my experience as well as what my physicians have told me as well as knowing someone who was making money by selling these supplements. Everyone has a right to their opinion, and that is all I am posting . . . my opinion. Nothing against you as a person nor what you believe in. I just simply disagree.

My husband's uncle got into the supplement selling business. They really pushed certain supplements (usually the higher costing) for specific illnesses (fibro and CFS as well as lupus and even claimed some helped certain cancers).

Also, I have talked to my doctors regarding this and have been told that these are not regulated by the FDA, and if they did such wonders, the drug companies would be the first ones on top of it. The FDA puts years into research. My doc said if these companies thought there were anything to these supplements, they would be doing studies on them now.

These supplement companies may claim studies; however, my doctor said that he has never seen one of these supplement companies give any real details to their studies. Plus, if they did thorough studies such as the major drug companies (at least 6 years of research if not more), that would eat up some of their profits.

Unless there are medically adequate studies that prove what they advertise, then people trying to sell sick people supplements for a profit, are cruel to do so, and are worse than the old Snake Oil Salesmen.
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deek Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Nov-14-04 11:23 AM
Response to Reply #4
31. Fibromyalgia
and my daughter has severe multiple disabilities including CP, legal blindness, seizures, tube-fed, profound developmental delay
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-15-04 05:34 PM
Response to Reply #1
40. you probably are, at times, no? and you understand what it's like,
that counts in my humble opinion.


peace!
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Cowboy Joe2k Donating Member (279 posts) Send PM | Profile | Ignore Wed Dec-01-04 04:31 AM
Response to Reply #1
103. Kick this to every one as fast as you can.
Edited on Wed Dec-01-04 04:32 AM by Cowboy Joe2k
Kick this. This is all we hoped for this is what the world needs tied up in a bow. For the holiday this is what the world needs now. entire world Peace. Kick this if you ever thought you were free. http://www.democraticunderground.com/discu...2&mesg_id=...

Kick this every chance you get least you wined up kicking the damn thing for ever. http://www.democraticunderground.com/discu...2&mesg_id=...

Kick this. this is the one little bit of information that can save the world.

http://www.democraticunderground.com/discu...2&mesg_id=...

I may have bargained a solid argument to avoid getting stuck in this damn contraption.
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oneold1-4u Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-30-05 07:47 PM
Response to Reply #1
135. Count every disabling day
Lupus has no CURE and is progressive! It can take a hundred forms, from swollen mouth/tongue (not able tho chew/eat) to hands and feet not functioning,(cannot pick up anything)The Rx is usually prednisone, which is liver destructive over long periods, (liver must handle every drug and food you use). Study lupus as a form of arthritic disease and seek alternative med and nutrition. Don't let Drs. destroy, and they are good at that!
For the hearing impaired there is not much. A person with 50% loss of sight is eligible for dis. but not 50% hearing loss! Hellen Keller said that the hearing would have been the most important to her! NO BODY HEARD! NO ONE LISTENED!
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tango-tee Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Mar-06-10 08:13 AM
Response to Reply #1
241. Dear M.B.,
for the past three months I've had debilitating symptoms of RA and also a rash around my nose/mouth area which disappears and reappears.

I'm not asking you for medical advice, but would like to know how were you diagnosed with lupus? Are there very specific "lupus-only" symptoms? I have no idea, all I want is for the damn quacks to tell me WHAT is the matter with me.
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lazarus Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:38 AM
Response to Original message
7. Oh, yeah
ADD, Bipolar, and Psoriatic Arthritis. I might have Fibromyalgia, too, but we're not even thinking about that until we get the rest of it under control.

I'm on disability, but with a second Bush term, who knows?
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grilled onions Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-04-04 02:54 PM
Response to Reply #7
104. another psoriatic arthritic here
39 years and counting...
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haele Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Feb-11-05 11:09 PM
Response to Reply #7
123. And not only are you on disability -
Me, your lovin' wife, is also disabled - though considered partially disabled -

Pre-emphysemal condition (due to industrial chemical exposure damage to lungs 7 years ago), drop foot on the right side, and a L3/L2 disk that may or may not be herniated and pressing against the cyatic nerve cluster on the right side due to that nasty workplace fall two years ago and poor doctors. And who knows what menopause will bring?

Travelers is finally settling on the fall damage, two years after the event; at least they're leaving the case open enough for me to be able to re-file if things get worse over the next 5 years.

It's been hell, but at least I have enough education, experience, and reputation that I can still work on a decently paying job that has limited physical exertion to it.
Too many people in my field and condition are forced to retire. And most of those end up on the street as working poor.

Haele
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Maine Mary Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-19-05 08:21 PM
Response to Reply #7
149. Bipolar, PTSD, Generalized Anxiety D, Panic D & Social Anx. D
Hi lazarus! You may or may not remember me but you and I used to square off from time to time over Child Support ect. I've been away from DU for about 10 months during my breakdown. That's when I was diagnosed. I'm on this ridiculous drug cocktail some of which give me nasty side effects. Right now, it's Lithium, Xanax, Vistaril, Celexa, and Trazadone. I don't think they're helping. 2 years ago I was a State Rep, now I barely leave my house.... actually I don't except for appointments. Otherwise I go with my sister, mother or boyfriend. So I'm thinking of ditching the Lithium, Celexa and Trazadone.

NO, I'm not going to do anything rash. I'm going to wait and ask my pyschopharmacologist. Sorry I'm just rambling but what do you take for a mood stabilizer? Anything w/less side effects then lithium?

Oh and one other thing. I was JUST reading this morning about different types of arthritis in my John's Hopkins Family Health Guide. The reason? I wondered if I have some form of it. My neck on one side has been aching for years. It sounds like rice crispies every time I turn it to the left. And sometimes I feel as if the weight of my head is too much for my neck. As I've said, I've lived like that for years and my F-Doc just wrote it off as stress. But now the aches and pains seem to be everywhere and I get the 'rice crispies' noises every morning--back, shoulders, arms, hands, fingers, legs and even my feet.

And another weird thing is my lack of strength. In order to go downstairs I have to go one foot at a time and lock my knees for balance and strength; ALWAYS holding the bannister. This may have something to do w/all the drugs I'm taking and too much inactivity but I've a sneaking suspicion it is some type of arthritis. Arthritis (though I'm not sure which kind) runs in my family.

Don't worry, I'm going to speak to my P-Doc and F-Doc but in the meantime do any of those symptoms sound like your Arthritis? Especially the crackling sound-- Do you get that? That is one symptom I can't seem to find anything about.

Thanks Lazarus- It's good to see you again, and now were on the same side of the fence. :-)
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MaryBear Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Apr-11-06 10:02 PM
Response to Reply #149
162. Bipolar.
They all sound like part of Bipolar Disorder, Maine Mary. Hope you haven't done anything rash since this post in December. Remember - it tricks the brain into thinking you know what is best vis a vis your mental health. The truth is, you do - but only in consultation and cooperation with a good MD.

MB
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riki_garrin Donating Member (2 posts) Send PM | Profile | Ignore Fri Mar-13-09 11:44 PM
Response to Reply #162
226. Bipolar
MaryBear, you seem knowledgeable about BP disorder. I work for
a state Agency in Pennsylvania, and I managed to keep my
problem secret until I had a bad stretch and had to be
hospitalized.
I was out a total of 5 months in 2007.

When I returned they started giving me bad evals,
disciplinary hearings (my record had been impeccable prior to
this) and are using any trick in the book to try to force me
out. I've been off the past month because it finally got to
me enough that I had a big meltdown.

The Americans with Disabilities Act was designed to protect
one from discrimination due to disability, but as long as
they're not stupid enough to say, "We want you gone
because you're Bipolar," I have no protection at all.
I'm at my wits end.
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ezee Donating Member (615 posts) Send PM | Profile | Ignore Sat Nov-13-04 10:40 AM
Response to Original message
8. Have been disabled since
1997 with COPD,emphysema. Had to retire in 2000. If you know a smoker please encourage them to quit. Smoking has cost cost me a business, a relationship, and a quality of life that most take for granted, just walking to the mail box is an ext ream effort. Gives new meaning to the phrase "you don't know what ya got till its gone".
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woofless Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 11:14 AM
Response to Reply #8
13. Same here.
I just got approved for SSDisability and what a relief that is. Strange how everything slows right down when you can't breathe, ain't it?
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Tony_FLADEM Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:41 AM
Response to Original message
10. I have Spina Bifida.
Edited on Sat Nov-13-04 10:44 AM by Tony_FLADEM
I am paralyzed from my waste down, but I drive and I am pretty independent.
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Name removed Donating Member (0 posts) Send PM | Profile | Ignore Sun Oct-23-05 02:19 AM
Response to Reply #10
131. Deleted message
Message removed by moderator. Click here to review the message board rules.
 
OneBlueSky Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 10:45 AM
Response to Original message
11. I have a condition called cauda equina syndrome (CES) . . .
a set of neurological deficiencies resulting from damaged nerves due to a herniated disc that went undiagnosed way too long . . . been disabled since 1990 . . . rather than a discrete condition, CES is syndrome, i.e. a collection of symptoms . . . they range from numbness to chronic pain to foot drop to bowel and bladder dysfunction . . . anyone interested can find out more at the CES Resource Center website: http://www.caudaequina.org /
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Only Me Donating Member (631 posts) Send PM | Profile | Ignore Wed Nov-17-04 11:13 PM
Response to Reply #11
60. My husbands doctor recently explained this
to my husband. They said surgery for his back problems were to risky and that even with some degree of success he still had problems that couldn't be corrected. He suffers many of the things you described and they said he would get worse as time goes.
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DemBones DemBones Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 11:12 AM
Response to Original message
12. Hi, y'all, I have lupus, fibromyalgia, asthma, hypothyroidism

(probably Hashimoto's), mitral valve prolapse, and I probably left something out. Needless to say, my immune system is not the best! ;-)

My primary care doc told me last week that there is a new drug for fibromyalgia that seems to be working well for some of his patients and he wants me to consider taking it. It works by stopping synaptic activity of pain nerves without doping you up, supposedly. He thinks it would allow me to decrease my pain meds, which would be great.

Yesterday, I went to my rheumatologist, who has the personality of a rock (a dull, grey rock) and he droned on about how "they" have now discovered more about the neurological basis of fibromyalgia, that brain scans show people with FM feel pain in a different area of the brain from "normal" people, but unfortunately this hasn't led to medication yet.

I'm guessing my rheumy is such a boring nerd that the drug reps don't want to talk to him.

:evilgrin:
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Modem Butterfly Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 05:13 PM
Response to Reply #12
18. What new FMS drug are you taking?
My friend with FMS is having a lot of issues with her pain meds and digestive tract (I started to explain this, but I'm pretty sure this crowd understands all too well).
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DemBones DemBones Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 11:06 PM
Response to Reply #18
29. I'm not taking it yet, my doctor just wanted me to think about it.


I wish I could remember the name of it. Brain fog! :spank:
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-15-04 01:24 PM
Response to Reply #29
38. this should be one place "brain fog" does not invite a spanking :)
fog away! for some of us that is as much of our life as brain clarity is.

i learned, relax and it usually clears.


peace!
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Katidid Donating Member (310 posts) Send PM | Profile | Ignore Mon Oct-29-07 07:02 AM
Response to Reply #29
218. I think that the new drug
is Lyrica - the FDA has just approved it for FM

I take 150mgs a day - it definitely works with the joint pain in hands, elbows shoulders, hips, knees etc. and also helps the with the numbness. But I do sleep a lot, which right now is OK, since I also have sever insomnia.

Hope this helps.
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WarNoMore Donating Member (530 posts) Send PM | Profile | Ignore Sat Nov-13-04 11:16 AM
Response to Original message
14. I have fibromyalgia
and peripheral neuropathy and cervical radiculopathy. I've tried for 4 years to not worry too much about the future, but Bush's second term has me wondering how much longer I will be on SSI.
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walk softly Donating Member (182 posts) Send PM | Profile | Ignore Sun Oct-29-06 03:47 PM
Response to Reply #14
183. peripheral neuropathy?
I was diagnosed so many years ago with Fibromyalgia - about the time they came out with MRI's in University Hospital in Iowa City - about 28 years ago? Anyway, thought it was better than original diagnosis of MS. Life now is just a shell of what I used to be - just got out of bed after a week, but re neuropothy, about five years ago started seeing double, many times couldn't focus at all, getting worse even with prisms etc. U of Ia doctors diagnosed FMS as cause. Had to leave great job, am falling all the time because of vision, broken both wrists, need new knee due to trauma etc. Anxious to hear more re FMS and vision problems.
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Individualist Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 11:41 AM
Response to Original message
16. Partially disabled
from rheumatoid arthritis, coronary artery disease (age 61).
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WarNoMore Donating Member (530 posts) Send PM | Profile | Ignore Sat Nov-13-04 06:25 PM
Response to Original message
20. I realize this isn't the right place for this..
but this forum makes me recall that I haven't seen Kanary post in a while. Anyone know if she's OK?
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DemBones DemBones Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 11:02 PM
Response to Reply #20
28. I just sent you a PM. nt
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southlandshari Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 12:15 AM
Response to Reply #20
64. Kanary moved on to another progressive board
and is no longer active at DU, though I know I am not alone in hoping she comes back to us. Kanary was the first DU'er I got up the nerve to send a private message to. I think I can get messages to her, if any of you want to pass along greetings (just send me a private message and I'll forward it on!).
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AlienGirl Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 07:10 PM
Response to Original message
21. Checking in...
I have depression, General Anxiety Disorder, Asperger's Syndrome, and a bunch of physical aftereffects from cancer and its treatments. I get SSI (as well as working and going to college) but don't get any money from it--I just use it for the medical coverage.

Tucker
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WarNoMore Donating Member (530 posts) Send PM | Profile | Ignore Sun Nov-14-04 02:34 PM
Response to Reply #21
33. Did you
develop lymphedema? I did and my health insurance doesn't cover the compression sleeve, tho' it did cover some therapy.
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Lugnut Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-13-04 07:25 PM
Response to Original message
22. Disabled since 1994
Due to spinal cord injury. I have spinal fusion of C-3,C-4 and C-5 in 1994 to stabilize C-4 which had impinged my spinal cord. The neurological damage was already done and is irreversible. I'm lucky to only need a wheelchair when a lot of walking is involved in where I want or need to go. I'm very fortunate to be able to drive and walk even though that's limited.
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dwarfsky Donating Member (16 posts) Send PM | Profile | Ignore Sun Nov-14-04 08:41 AM
Response to Original message
30. Hello
I'm a dwarf, stand 2 ft, 11 AND 1/4 inches. (That 1/4 inch is important ya know ;)) My driver's license says 3 ft because the machine couldn't handle anything shorter. :D
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-15-04 05:23 PM
Response to Reply #30
39. hello, dwarfsky. welcome to DU.
the challenges of being a dwarf kind of argue for using the term 'differently abled,' or something. it shouldn't be a 'disablility'. but i can imagine it would feel like one, the way people have no time - or structural accomodations - for differences any more.
it must be extremely challenging.
it's great you drive. have you found workplaces that work with you to accomodate your challenges? or is it all up to you?


keep on.


peace!
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dwarfsky Donating Member (16 posts) Send PM | Profile | Ignore Thu Nov-18-04 07:49 PM
Response to Reply #39
77. Thanks for the welcome!
Hi nofurylike,

Its a challenge, but not an insurmountable one. Yes, Ive found that my workplaces will work with me. I try to do as much on my own as possible. Like, I bring my own stools for my desk and the bathroom. I have a cane which allows me to open doors. So, I havent really had to ask for much accommodation. The big one was the parking space near the door, once they put a time card machine in. My boss is good about the little things too. He went and got the door handle for his office himself because he was tired of waiting around for HR to do it.

The other thing that really helps a lot is that my husband works at the same company. If he ever left, theyd have to change some things. For the most part though, I have found companies very willing to accommodate once they see that Im willing to do my part for my own needs.

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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-22-04 12:54 AM
Response to Reply #77
90. hi dwarfsky. thanks for replying!
that's great that workplaces work with you. it's also fortunate for them that you create so much of your own accessibility (generous, you let them off easy)! really, it sounds like you have good cooperation.

it seems it would be nice to work at the same company your husband works at. :)


be well and see you round the boards!



peace!

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GeorgeBushytail Donating Member (862 posts) Send PM | Profile | Ignore Sun Nov-14-04 08:34 PM
Response to Original message
34. I have Epilepsy and Central Pain Syndrome
I am 52 and have been totally disabled for the past 7 years. Speech and being around noise is difficult for me.

I was a keyboard activist in the last year - pressured Disney to release f9/11, wrote letters to Nader voters trying to sway them, built a small anti-Bush website.

I am a medical marijuana user. I just moved from Washington state to Wisconsin. In WA I was legally authorized to use it; in WI it is illegal. I am part of the Wisconsin medical mj group "Is My Medicine Legal Yet".

I am very interested in networking with disabled progressive activists.

Sometimes the DU board moves too fast for me to keep up with so it's great to have this group.
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undergroundpanther Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Nov-14-04 11:06 PM
Response to Reply #34
36. Hi
I have depression PTSD and dissociation ,a hospital record decades long. It sucks. I have ADD...
I may have fibromyalgia.Got allergies.

Disabiliies come in all shames and kinds. And sometimes you don't want it fixed sometimes you do.
I have chosen to stay multiple,on purpose try explianing that to a shrink who thinks sucess is foring a multiple to act like one ego.
Shit I think most people are polyegos they just aren't consious of it.I mean why do people wityhout a dissociative history talk to themselves..I mean who are they talking to exactly..LOL!
There is so much humans do not know about our own bodies and brains,the arrogance of some people("professionals" especially) is astounding.

Anyways I associate myself with psych rights I like mind freedom and on our own.These two places have nothing to do with scientology.Bush has alot of nastiness headed for the psych survivors..hold onto that mad pride y'all..and fight the good fight.
Glad to be here.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-15-04 01:07 PM
Response to Original message
37. Woohooo! yes, i'm here, and posting with my new star!
thank you to a very kind person who gets it about disability and enabled me to join!
i'm bowled over by that kindness!

i am disabled with an invisible disability, like so many here, from what i read. i have debilitating brain damage (violent assault, but thirty years rehabilitated as much as possible); i already had chronic 'recurrent mononucleosis' - epstein-barr virus - when that happened to me.

thirty years' (marginally) surviving these challenges has left me with debilitating ptsd. i am 99% housebound - that is, rare outings with assistance.

i have long been, as GeorgeBushytail put it, a keyboard activist.

as you all must know, there are forums for the disabled out there, but they usually are not politically progressive. DU has been my main community for years now, but i have been an outsider here too.

now, you have let me feel included.

also like GeorgeBushytail described, this place really moves too fast for me. that is wonderful in an activist forum, but does always leave me behind. i do a lot of thread kicking, some "yeah"s n "thanks," and some grousing now and then, but posting a thread of my own can take me an entire day - including quelling the shaking - and becomes full-time work to maintain.
(one reason - some will have seen - i almost always post in pre-dawn hours.)

i know many of you can relate. well, please know that as i read i could relate to all of you too.

THANK YOU for including us!!
and THANK YOU kind one, for my star!!


peace!
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zippy890 Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-16-04 05:24 AM
Response to Original message
42. Biological depression
I am glad to see this group.

While there has been a lot of education and awareness of biological based mental illness, there is still a LOT of stereotypes and misunderstanding.

For example- I HAVE to take psychotropic (sp?) medication and am thankful that these medications exist because they WORK.

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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-16-04 11:57 PM
Response to Reply #42
44. hi, zippy890. glad to meet you.
i'm wondering from reading your post if you think or feel that people here wouldn't support your choice to use medication that helps you.

i do know you must feel a lot of pressure not to use it, when there are so many fighting using it, but i hope you will find that people here hold the principles of choice and self-determination quite high.

it seems to me that this would be a good subject for a thread some time.


peace!
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zippy890 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 04:56 AM
Response to Reply #44
46. Thanks for your reply
Yes, to some degree I feel the pharmacutical conspiracists don't understand that some of us must take medication in order to live.

It is not an option for me, I wish I did not have to take these drugs, but I do.

I appreciate your sensitivity.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 03:24 PM
Response to Reply #46
49. hi, zippy. thank you.
i think you'll find that folks here are just glad for you that you get relief.

there are important issues on medication, and i'm sure we'll have threads on those, but even psych survivor groups are recognizing that meds are lifesaving for many.

keep on


peace!
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Banazir Donating Member (164 posts) Send PM | Profile | Ignore Wed Nov-17-04 04:23 PM
Response to Reply #49
52. Most psych survivor groups are pro-choice on drugs
My position is being pro-choice on medication. As in people can put what they want into their bodies after being informed of the real risks and benefits. That "informed of the real risks and benefits" part is important, as is that the choice must not be forced/coerced/threatened. I don't care what other people put into their bodies, and I'll put what I want into mine, but I spent years under forced and coerced drugging (with basically every major class of psychiatric drug in existence) and would never ever suggest that as a good thing.

This is also the position of most major psychiatric survivor groups, although many are rightly calling into question some of the shaky biological claims made about the medications, and the downplaying of the risks. Which is a good thing: Truth is important, and I have plenty of neuroleptic-induced brain damage as a precise consequence of the lies.

My life as it actually is would be said to be impossible by mainstream psychiatry, and that is important and not in any way an attack on people who actually choose to put drugs in their bodies. The fact is that so many of us are "impossible" bears investigation though, given how many of us have been told we would never survive without a given drug, and survived (and more!) in spite of the drugs rather than because of them. Psychiatry ignores this, and that is why you get a lot of the backlash: We want our lives represented too; the idea of taking drugs is already well-represented within psychiatry (the reasons the drugs work when they do, however, is not well-represented at all).
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 09:43 PM
Response to Reply #52
56. important points you raise. that's why i think it needs a thread.
i can't start one yet, though will eventually if no one else has by then.

keep on


peace!
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rednitej Donating Member (8 posts) Send PM | Profile | Ignore Tue Jan-04-05 10:31 PM
Response to Reply #42
113. I also am glad to see this group
I also take psychotropic meds. They have (quite literally) saved my life.

I lived with dysthymia from age 9-19. I didn't know that this wasn't "normal," and that life wasn't that 'blehhh' for most people... it was just my own norm/day-to-day state of being.

During my sophomore year of college, one of my friends from home started calling me, wanting me to talk him down from killing himself. Eventually, I couldn't take the pressure, and wasn't able to do work, and stopped functioning as a student. I went to talk to my professor about the paper that I should have turned in over a week earlier... I told her what was going on in my life at the moment. All of a sudden, I was crying, shaking, and couldn't regain my composure. My professor was eventually able to calm me down, and convinced me to go see someone over at student psych.

Many medication trials later, some awful side effects, and fun times with the insurance carriers, I now am a clinical depressive in remission.
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ruthg Donating Member (352 posts) Send PM | Profile | Ignore Sun Nov-20-05 01:30 PM
Response to Reply #42
142. depression is torture...
It is incredibly powerful.

Ruth, been there, done that, and it is flaring up again ( got some drugs which will hopefully kick in soon).
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peteykgirl Donating Member (12 posts) Send PM | Profile | Ignore Fri Apr-09-10 05:05 AM
Response to Reply #42
246. what's that?
Edited on Fri Apr-09-10 05:11 AM by peteykgirl
what's biological depression? i have major depression disorder and some back crap. 3 yrs. of different meds and no help. even tried bi-polar meds. never heard of biological dep. hi, all y'all 'dissers'. i feel better with a crowd like y'all. some real great stuff in this forum.
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tibbir Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-16-04 10:29 PM
Response to Original message
43. I have bipolar disorder (mixed episodes), add,
ptsd and dissociative disorder. Psychotropics help with the bipolar part but therapy is the only thing that works for the rest. I'm a CPA and I ran my own firm until 1995. Now I'm on SS-D and medicare is my insurance. I'm scared to death about what the crappy repukes will do to my safety net during the next 4 years.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 12:33 AM
Response to Reply #43
45. hi, tibbir. good to meet you.
i can understand your fear of the * mob. that's a matter for many a future thread, i'd say - like how we can all support one another through these times.

keep on


peace!
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Bluerthanblue Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 10:58 AM
Response to Reply #43
68. Hi Tibber-
i have the same dx. as you, except i'm 'rapid/cycling' and also have athritis,(am in desperate need of knee replacement) and have had one bout of crivical cancer, which, i believe has returned-
i have 2 kids, and escaped from an abusive marriage of 15yrs by the skin of my teeth- i only worked jobs where i could take my children, and hence had very little 'quarters' counted for sdi- it was leaving my ex, (which is when i completely fell apart) that i became unable to 'function' beyond parenting- and had to go on ssi- then, my parents died, and i was faced with staying on ssi, and signing our farm over to the 'state' upon my death- (leaving my kids penniless, and homeless) or inherting the farm, and going insuranceless- i chose the second-

and was SO hopeful that some sort of catastrophic insurance would become available to help me get medical care- Unfortunately, that is a long lost dream, at this point- and doubt i'll last till we DO eventually have a 'regime change'-....

Hope things don't change for you in terms of what help you are getting through the govt.- Are you still able to do much CPA work? i'd imagine it would be pretty stressfull- since (what little knowledge i have - is that march and april are hell times for you folks)-

Wishing you well- (too bad Mrs.Gore wasn't the 1st lady- SHE had a heart for those of us who suffer from what many see as 'character- defects' or 'lack of bootsraps'-)

blue
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Imagevision Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-23-06 11:37 PM
Response to Reply #43
151. Tibbir, bi-polar here which totally sucks because of too many different
meds - seem to be just a guinea pig for Pdocs for what will we try this month? Staterun program, htey just keep trying drugs that in several experiences should not have been recommended in the first place.

I had history of epilepsy but they go oops, we forgot about that, stop taking meds immediately. bipolar- depression scks so freegin much -- used to own 3 businesses staff of 32 -- lost everything mainly due to Doctors incompetence!

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cutlassmama Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Sep-02-07 06:22 PM
Response to Reply #43
204. same here, in addition to many other physical problems. I'm
scared too.
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Banazir Donating Member (164 posts) Send PM | Profile | Ignore Wed Nov-17-04 02:31 PM
Response to Original message
48. Hi.
I'm a physically and developmentally disabled psych survivor/ex-inmate. I'm on DAC benefits and Medicaid (which I use for important medications), and get services through the department of developmental services and in-home support services. I use a wheelchair and an electronic communication board. Like others here, I am terrified of the consequences if any of this is taken away because I know exactly what they ultimately are. But I will fight the encroachment and continuance of frankly murderous policies in every way I can and as long as I can: It's not as if I could possibly lose more by fighting than I could if they are passed, and too much is at stake to leave this kind of thing alone.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 04:17 PM
Response to Reply #48
51. hello, Banazir. that's a powerful statement.
i've been trying to think of a thread expressing what you posted: how we're more immediately endangered, but often also have less to lose in fighting.

mixed uh... 'blessing'.

keep on


peace!

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Banazir Donating Member (164 posts) Send PM | Profile | Ignore Wed Nov-17-04 05:40 PM
Response to Reply #51
54. A strange and uncomfortable but potentially productive position.
Yeah. Exactly. It's a strange position to be in, and not a good one, but it allows for a degree of action that is much more difficult than in some other positions. (Unless you're in the position where you're already too incapacitated to do anything. I've been there too, and don't want to disparage people who cannot just "do something".) I've been in this kind of position once before in my life, and while I have no desire for this return of it, I at least know that it hardens me into a certain kind of focused action. If I can figure out the right direction to point it, that is useful.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 10:23 PM
Response to Reply #54
57. a thread for "the right direction to point it" too! soon.
i hear and relate.

you know, i often feel that our even keeping alive and caring about ourselves is a revolutionary act, in face of the intent of the dictator n mob.

then, those of us who can will act for all those who are endangered but can not physically act.


i think we have to go start us some threads on these things. there is so much to talk about!


keep on



peace!
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Banazir Donating Member (164 posts) Send PM | Profile | Ignore Wed Nov-17-04 10:46 PM
Response to Reply #57
58. Some ideas in that vein.
Yes. Keeping alive, and valuing our lives, and showing others that our lives have value independent of what our abilities are, absolutely. The ability-based elitism so many have, like someone's better in some kind of absolute moral sense just because they are able to do something someone else can't do, that's a huge problem.

Unfortunately some disabled people fall into it, putting ourselves over other kinds of disabled people. I knew a disability scholar who was shocked to find many physically disabled people got their self-esteem from not being cognitively disabled, for instance. I think it's vital when we're doing things that we're working for all of us. Not just in a superficial sense. Learning what matters to different ones of us and incorporating that even if it seems foreign. No "Nursing homes are bad, but developmental centers are natural," no "Developmental centers are bad, but psych wards are natural," and so forth. No splintering, but no automatic assumptions that we know what's best for someone whose life situation is totally different (we hate it when non-disabled people do that to us). Real thought. A real, inclusive, non-tokenistic progressive disability movement I guess is what I'm talking about, and what I've missed. (And both progressives and conservatives have screwed us over thus far, which is unfortunate. I really don't see genuine disability rights as being high on most people's agenda -- at best, we're seen as solely a health care issue, and at worst, we're seen in terms of our "right" to be eliminated from the planet while the rights that would help our lives be better are ignored.)

And, yes, doing things to ensure the safety of all is vital, and even to include people who wouldn't normally be thought of as includable. Really broadening the ideas of who is capable of participation, and what participation means. Participation can be asserting our existence in a positive way. I still believe that many of the so-called "non-compliant violent clients" (and those used to be my labels) stuck in group homes and other institutions are revolutionaries. I know that right now there must be tons of people who are housebound and don't have a lot of contact with the outside world, tons of people who are homeless, tons of people who are institutionalized, tons of people who for whatever reason don't have access to a means of communication that others understand. It's really important that with laws that could kill all of us, we stand up for the lives and value of all of us -- not "We're good because we're not like those others," but "We're good because we're part of human diversity."

And... yes. Basically what you said. Just expanding on it a bit myself. I'm something relatively close to housebound. What I do is educate my support staff and hope they educate more people. I give them writing by disability activists, I discuss the issues with them, I make sure they know that we are valuable people no matter what we can or can't do by non-disabled standards and no matter what category or "degree" of disability we get put under. The guy who was here tonight said he'd be distributing some of the literature I showed him to other people, and I showed him the DU site too at one point. It's vital, IMO, that we get other people, disabled and non-, seeing all of us as having full personhood and value. People being decent to each other, and knowing what it means to be decent to each other, is more vital than even the laws are, despite the fact that we need the laws as well: Without that, then the laws will fail, and with that, there will be more people grasping and responding to our political issues even if the laws are rescinded.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 11:31 PM
Response to Reply #58
62. hey, Banazir, i'm going to make a new thread to discuss on.
have to think of a subject line. may borrow from your writing.
great important thoughts, so well put.

look for the thread, or you start one and i'll look for that.

keep on


peace!
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 01:27 AM
Response to Reply #58
65. Banazir, may i paste this entire posting over on the thread i put up?
the questions you raised are those i want that thread to discuss.

i'll wait to hear from you before i do.


peace!
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Banazir Donating Member (164 posts) Send PM | Profile | Ignore Thu Nov-18-04 01:54 AM
Response to Reply #65
66. Ok.
Ok.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 02:03 AM
Response to Reply #66
67. you're here. thank you. n/t
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Oak2004 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Nov-19-04 08:41 PM
Response to Reply #48
81. Hi everyone, hi "Banazir" :)
(mind you, I usually call Banazir by another name, and still have half a message left on my answering machine from the aforementioned new DUer and old friend. If you're reading this, "B", do call back tomorrow -- today I had an angry parrot expecting a bath trying to rip the skin off my fingers as we spoke, and I had to go)

Like Banazir I have developmental and physical disabilities. Banazir and I met in the autistic community (where we both have a reputation as proud firebrands :) ). I use a wheelchair because of a rare orthopedic condition that causes chronic severe pain. In the last few years I've had a lot of health problems, mostly coming out of . I recieve SSI, medicaid, and recieve in-home services through the Medicaid waiver program in Vermont.

I'm not likely to spend much time in this forum for the next few weeks, because I'm busy setting up the website http://www.americanresistance.info and writing leaflets on the fraud. I've also decided to disregard recent health issues and get involved again in the Vermont Progressive Party (I'm a nonvoting city committee member and a member of the state committee). Assuming that I haven't either been killed by cuts or driven out of the country, and assuming the party agrees that my candidacy is appropriate, I'm running for Justice of the Peace in '06.

This is in order to protect our voter rolls in this deep blue liberal state. Right now deep blue state governments responding with programs of their own are our best defense against the destruction that will follow federal cuts. I'm sure they are eyeing all of us for opportunities to skew the vote and take control at a local level, and I am absolutely sure I have no confidence in the determination of Democrats to protect democracy.

There is so much to do. And I need to go and do more of it, so I'll end this into now. Just ask Banazir if you want any of the real dirt on me ;)
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Banazir Donating Member (164 posts) Send PM | Profile | Ignore Sat Nov-20-04 08:18 PM
Response to Reply #81
87. Hi, and I'll just point out
...that the only "dirt" I know on Oak2004 is that Oak2004 is the person who wrote the excellent letter to Elizabeth Edwards that I reposted over on the thread on genocide. It's somewhere in this thread:

http://www.democraticunderground.com/discuss/duboard.ph...

Oh yeah and that the only "dirt" that was there last time we talked was parrot poop.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-22-04 02:08 AM
Response to Reply #81
92. hello, Oak2004. glad to meet you!
Edited on Mon Nov-22-04 02:13 AM by nofurylike
that's great and crucial work you're doing.

i was blown away by your response to Elizabeth Edwards, on patience! it is powerful and piercing.

thank you for saying so well and courageously what so many of us live knowing and wishing to say.


please keep on

see you round the boards!



peace!
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colinmom71 Donating Member (616 posts) Send PM | Profile | Ignore Wed Nov-17-04 04:15 PM
Response to Original message
50. Not myself, but checking in here for my son...
Hi everyone! My 9 yr. old is a former 24 weeker preemie with hypotonic CP (walks with walker, wheeled when tired), bilateral severe/profound deafness, vision impairment, and is non-verbal. He's also a red-head with the attitude and stubborness to match!

I'm currently a stay-at-home-mom, though I've begun looking for a job while the little man is in school (self-contained SPID class with a wonderful staff!). I'm looking forward to sharing and learning on disability laws and policies with you all.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 04:31 PM
Response to Reply #50
53. hi, colinmom71. welcome to DU!
your son is very fortunate to have you fighting for him. it takes that, even more now.

i think that's a good idea for a forum, disability laws and policies.

keep on


peace!
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jwirr Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 08:04 PM
Response to Original message
55. I am going to check in for the people
Edited on Wed Nov-17-04 08:32 PM by jwirr
like my daughter who cannot do it themselves and have no voice except their parent/guardians. My Terri is developmentally disabled, has epilesy, is fed through a tube, cannot talk, walk, dress herself, is not potty trained, needs to have help turning and transferring and in general needs total care. Her illness is most likely the result of farm chemical contamination in the drinking water. I tell you this because many times she and her group are forgotten in this world. WHEN THE bushies TALK ABOUT WELFARE THEY ARE TALKING ABOUT THE PROGRAMS THAT HELP TO TAKE CARE OF THE LEAST OF THESE. We need to organize here as a forum that can ask the other members of DU to back us when we need it.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-17-04 11:09 PM
Response to Reply #55
59. hello, jwirr. glad to meet you.
how fortunate your daughter is that you act as her voice - above all else you do! your voice is powerful.

yes, time for some organizing threads.

keep on


peace!
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mopaul Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 12:10 PM
Response to Reply #55
70. thanks for speaking for her
parents of disabled children are a special breed.
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Only Me Donating Member (631 posts) Send PM | Profile | Ignore Wed Nov-17-04 11:27 PM
Response to Original message
61. Hi Everyone, I have been, officially since 2000..
I have Chronic Heart Failure (From Heart problems) Diabetes, DDD with compression, DJD, RA, Undifferianted Connective Disease, Raynualds(sp?), Neuropathy, Anxiety/Panic Disorder, Fibromyalgia and a host of other ailments. I am just one big walking complaint. ;-) No, I really try not to complain- Alot of folks have it worse than me.


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mopaul Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 12:13 PM
Response to Reply #61
71. complaining is o.k.
and the old agage, 'could be worse, always someone worse off than me' is true. but somewhere, someplace, is a man or woman who is worse off than anybody.
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 01:58 PM
Response to Reply #61
72. hey Only Me. here, we're asking, know that feeling. glad to meet you. n/t
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Only Me Donating Member (631 posts) Send PM | Profile | Ignore Sat Nov-20-04 12:12 AM
Response to Reply #72
83. Yep, I sure do know that feeling. Nice to meet you too!!
:hi:
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-22-04 01:14 AM
Response to Reply #83
91. thanks for the reply!
:hi:


see you round the boards!


peace!
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southlandshari Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 12:10 AM
Response to Original message
63. Guillain-Barre Syndrome
still recovering after waking up paralyzed from the neck down and ending up sleeping next to a respirator in ICU four years ago. I've come a lot further than perhaps the majority of GBS survivors, but the experience is still very much a part of my daily life.

I now work as an employment specialist for a nonprofit that helps people with disabilities find competitive employment in their local community. I can't tell you all how happy I am to have found this forum!!
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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 02:27 PM
Response to Reply #63
73. good to meet you, southlandshari.
what great work, passing along chances!

keep on


peace!
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mopaul Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 11:55 AM
Response to Original message
69. polio, aged 2 years
Edited on Thu Nov-18-04 12:05 PM by mopaul
born with kidney infection in 1951, surgery, large scar on left side. earliest memory is rolling around in a wheelchair with a tube coming out of my side into a large jar. age 2, caught polio, in major epidemic in st. louis. almost died, whole left side temporarily paralyzed, left leg atrophied, 5 inches shorter. years of corrective surgery in shriner's hospital for crippled children in st. louis. all paid for by the shriner's/masons. released at age 13.

wore leg brace up to hip till i was 10, then a knee brace. could actually walk and climb mountains and most stuff normal kids do, except skate.

age 15, head on collision, father driving, maniac going 80 on a hilltop. massive facial cuts, blinded temporarily with glass. 400 stitches on face and throat, 4 years of cosmetic surgery.

then i was pretty much o.k. for about 25 years or so, had a heart attack in 95, been in a wheelchair for 10 years, graduating next week to a motorized chair.

polio is a virus and like the flu, only lasts a few days, but it could really mess a person up, or kill them outright. lots of paralysis, useless arms and legs, iron lung machines, any number of bizarre afflictions. and of course throughout history it has killed millions.

polio vaccinations began the year i got it. i am one of the last american kids to get it, before it was wiped out utterly in our nation. it still exists, in poorer pockets of the world, where hygiene is impossible. we can all thank our lucky stars that this plague was eliminated by dr. salk, and researchers like him.

i now have post-polio syndrome, which is the after effects and aging combined. a general lack of mobility, joint problems, chronic pain, but it could be worse.

i've been disabled literally ever since i can remember, but i wonder sometimes if it's not worse when you're perfectly healthy one day, and disabled the next. that has to be hard on a person, i've seen it happen.

there are many kinds of disabilities, and there are DIFFERENT levels of disability. for instance, i could get up out of my chair and kick somebody's ass if i had too, or i can still drive my own car and shower my own self, but that could all change. and the truth is, a disability can be a great equalizer of people. a crippled man can sympathize with a deaf woman, and a blind man can relate to a severe dyslexic.

i remember being in the boy's ward, and all boys were of different colors and ethnicities, black, white, jewish, catholic, but we all had our disability in common, to make us all equal.

my father has severe dyslexia, and i have a serious case of it too. he never made it past 3rd grade, and was considered retarded, quite a stigma in the 1940's. yet he raised himself up and raised a family of five as a railroad engineer, even though he cannot read, and has never read a book. his severe disability never stopped him.
but it was a rough road i'm sure.

sometimes i like to fall into self pity and whine a bit, then i'll see some little girl in a wheelchair who is so beautiful, but who can't do anything but sit there and smile. and then i fall into self loathing and remembrance of all the little boys and girls i grew up with in shriner's hospital for crippled children. let me tell you, i was one of the lucky ones.

i'm glad there is this forum, and glad to be able to whine amongst those who might understand a bit. misery loves company, and knowing there are plenty of others in the same boat, makes it less miserable.
people can all have their little groups and cliques that they've joined up with, but our little group, and it's not so little, is one in which you don't join, but earn membership to involuntarily.

we gotta stick together.

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DemBones DemBones Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-08-04 01:57 PM
Response to Reply #69
109. Beautiful post, mopaul. You're so right that

we gotta stick together. Whine together, rant together, fight together.
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otohara Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-23-07 06:28 PM
Response to Reply #69
217. Fellow PPSer & One Time
poster child here.

I wish I had a scanner, I'd post pictures of 4 year old me holding hundreds of carnations for the March of Dimes.

Post polio is a nightmare that just keeps getting worse.
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otohara Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-31-09 03:55 PM
Response to Reply #69
227. I Was Almost 2
19 mos.

PPS sucks.

I just got a new brace designed for PPS'ers. It's pretty amazing....e-mail me if you have questions.

This is pdf from Dr. Eulberg, she is here in Denver. http://www.post-polio.org/edu/pphnews/pph22-2p1-2.pdf

DBS http://www.dynamicbracingsolutions.net/DBS_News.html
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CaliVoter Donating Member (22 posts) Send PM | Profile | Ignore Thu Nov-18-04 02:38 PM
Response to Original message
74. But everyone has carpal tunnel .....
Edited on Thu Nov-18-04 02:40 PM by CaliVoter
... that was my reaction when I was told I had bi-lateral CTS in 1995. I kept working at my high pace, high stress secretarial job, and in late '98, developed "cumulative trauma" disorder, where upper extremities basically froze and I was unable to move. Doctors also added fibromyalgia to the dx. Took a couple years of tests and finding the right doctors to discover the peripheral neuropathy, cervical radiculopathy, and herniated discs. Have had two cervical surgeries for fusion at C5-C6, and left CTR. A couple months ago I went through all my medical reports and compiled a list of about 15 different diagnoses recorded by the doctors (chronic pain, DDD, repetitive stress, depression, GAD, etc). I've been off work for almost 6 years, and have always hoped for recovery and return to the work and job that I loved. Have been told recently that this won't be the case, permanent disability rating is just around the corner, and I have to ask for a disability retirement from my job. I'm only 41 and took this news pretty hard.

What's tough is trying to see through the fog, and trying to find the physical strength and mental energy to follow through on that disability retirement application and trying to follow the pending changes to the CA Worker's Compensation program and what effects that will have on our permanent disability ratings.

It's also hard explaining to others why I can't or don't want to do this or that, because, other than the surgery scars, it's not an outwardly obviously physical disability (except when observing folks like us trying to stand up, walk, or do anything physical).

Trying to stay positive but sometimes it all makes you want to scream!!

Oh, and I'd tell anyone who has been diagnosed with CTS, don't ignore it, pay attention to the warning signs, insist that you have an "ergonomically correct" work environment, take those 10 minute rest periods every hour (no matter the looming constant deadlines and pressure to get things done), and breathe!! (I've learned that oxygen and proper breathing is good for your body - when one is stressed, they tend to hold their breath, not allowing oxygen through the body, which causes tightening up/tension, which can lead to other problems).



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WarNoMore Donating Member (530 posts) Send PM | Profile | Ignore Thu Nov-18-04 06:27 PM
Response to Reply #74
76. I only lately heard of cumlative trauma disorder
and I said to my daughter that I coined a term before I even knew there was such a thing. I really suspect that I have this disorder. Could you fill me in a bit?

Thanks.
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otohara Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-31-09 03:59 PM
Response to Reply #74
228. Vitamin B6
P5P formula. I'll take it forever - got rid of CTS for me and now is working for my husband - it took 3 months for me, a year for hubby. 100 milligrams 3X per day. http://findarticles.com/p/articles/mi_m0FDN/is_1_6/ai_7...
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u4ic Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 02:54 PM
Response to Original message
75. CFIDS and Fibromyalgia
Edited on Thu Nov-18-04 03:28 PM by u4ic
I became terribly sick with the stomach flu in 1991 - and never recovered fully. I was 24.

I was able to work/go to school for 5 years - but couldn't socialize, or have any sort of a life outside my main focus, which I barely had the strength for anyway.

Four of those 13 years I was bed ridden, and four years I have been pretty much housebound, but not bedridden. The latter is the phase I am currently in, not having worked since 1999.

It's a pleasure to meet you all.
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idiosyncratic Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-18-04 07:52 PM
Response to Original message
78. I have Multiple Chemical Sensitivity and chronic Lyme disease
Until my diagnosis, I thought I was crazy. MCS is a terrible thing to try to live with because you can't be around any type of chemicals, from perfumes to fabric softeners to pollution to fresh paint or new carpeting. Clean fresh air is almost the only treatment.

The Lyme disease was finally diagnosed in 2000 and I've been on antibiotics since then.
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catmandu57 Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Nov-19-04 11:28 AM
Response to Original message
79. Natural born cripple
I, like Richard III am a man but half formed.
I'm always in too much of a damn hurry, I came out of the egg two months to soon, and I've been paying for it ever since.

It's quite a story actually, I was born in a small town doctors office to a just turned sixteen year old. I came out at a little over one pound, the doctor wrapped me in a blanket, put me in a shoe box and drove fifty miles to the nearest hospitial with me on the floor under the heater.

Mind you I don't remember anything of the trip, being too young, so I'm relying on second hand sources here. I spent the first months of life at the hospital, and actually had a somewhat normal life up to twenty yeats ago.

At that time I started having trouble with locomotion, I would stagger and fall without warning, my feet began scissoring, and it's progressed to the point to where I need a chair for any distance, and can only take two or three unassisted steps.

As a result, I stay home 98% of the time now, living in this electronic world. I'm living on ssi and I'm waiting for a letter to come to either tell me the program has been killed, or that I'm being cut severely because the government is broke.

I'm an educated man, I have a bsw, unfortunately, I graduated into the teeth of poppies resession, and my problems were really starting to be noticed at the time, and being an older nontraditional student/worker looking for an entry level position in my area was impossible, so I took the ssi.

Sometimes, it gets depressing, my world has shrank so, it's just my wife and I, plus the cats. I've met Mo, he just lives down the road a piece and we're lucky to have a man of his talent with us.

So, this is me a middle aged natural born crip, basically waiting for either my door to get kicked in in the middle of the night and drug off to a reeducation camp, or told to go die somewhere, kind of depressing, but I'm not putting it past these bastards.


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nofurylike Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Nov-19-04 01:31 PM
Response to Original message
80. thank you for this welcoming thread, fugue. glad to meet you. n/t
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recoveringrepublican Donating Member (779 posts) Send PM | Profile | Ignore Fri Nov-19-04 10:26 PM
Response to Original message
82. Hard of hearing here eom
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crimson333 Donating Member (760 posts) Send PM | Profile | Ignore Sat Nov-20-04 02:47 AM
Response to Original message
84. M.S. here
19 years and counting
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onecitizen Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-20-04 01:03 PM
Response to Reply #84
86. Hi everyone........
why do I feel like I'm a new member in a 12 step program? :-)

I've had MS since I was 26y/o. I'm 53 now. It's been a long, lonely journey. Glad we now have this board! Thanx Skinner!
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happynewyear Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Nov-21-04 05:15 PM
Response to Reply #86
89. hi!!!
:hi: same here - diagnosed in 1995 ... it is a long lonely journey isn't it?

Thanks to Skinner! :)

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caledesi Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Aug-10-07 01:15 PM
Response to Reply #84
201. MS too. Still trying to accept the "new" me. Been 4 years! NT
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Ezlivin Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-20-04 10:54 AM
Response to Original message
85. Spinal cord injury, T-4 complete
While living in beautiful Hawaii, I was riding my bike and got run off the road by a "hit and run" driver. It happened in a military housing area, to boot.

Just had my 24th anniversary (Nov. 17) of the accident. Not that there was celebrating or anything like that. (Okay, maybe celebrating the fact that I'm alive. :)

I only hope that after posting this that I am not inundated with links pointing to "cures" or some special Russian chiropractic technique that is outlawed in the US but is now available....

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happynewyear Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Nov-21-04 05:14 PM
Response to Original message
88. staying alive here
:hi: Was DX'd with MS in 1995 after about 10 years of attacks. Now on SSDI and Medicare and I do have a supplemental insurance plan from my former employer. I'm still going here and not buying into the drug game with MS and oh how does it ever suck like all hell.

Anyway ... :D Glad to see this group on this forum. What can we as disabled people do? I contribute a few $ to various causes when I can but I can't do a whole lot physically being I feel so shitty most of the time. I feel bad I cannot contribute more or do more than I do, but then again, it is better than doing absolutely nothing which is what most of America does - NOTHING.


:kick:
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Wordie Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-23-04 08:43 PM
Response to Original message
93. I'm checking in too, although I hope you will understand that I want to be
a little vague about the nature of my disabilities. In fact, just not mention what they are at all. I guess after decades of trying to hide, for fear of job loss, the conditioning is just too strong to allow me to post my personal info on the internet, even here. I really appreciated reading all these stories, though. And hope to check back here often.
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fugue Donating Member (846 posts) Send PM | Profile | Ignore Fri Nov-26-04 08:41 PM
Response to Reply #93
100. What you want to reveal is up to you
My therapist says we've got to teach me how not to reveal things about myself. I have a tendency to be overly honest. (Just with my own life, people! I don't tell other folks' secrets!)

Anyway, Wordie, we'll take your word for being one of us, so long as you don't start saying, "Hm, maybe the disabled really should die for the good of the country . . ." ^_^

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masshole1979 Donating Member (172 posts) Send PM | Profile | Ignore Wed Nov-24-04 05:39 PM
Response to Original message
94. ADHD....
...I know that just barely qualifies as a disability (it's covered by the ADA, dammit!), but there doesn't seem to be a mental health forum.

Is anyone on here working on fighting the Scientologists and other wack jobs who want to take away people's meds?
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proud2BlibKansan Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-27-04 05:00 PM
Response to Reply #94
101. Are they still doing that?
Edited on Sat Nov-27-04 05:01 PM by proud2Blib
The Scientologists started this nonsense back in the late 80s. I am a special ed teacher and parent of 2 ADHD kids myself. I haven't heard anything about the Scientologists' campaign in several years now. When I was active in a parent group back in the early 90s, we wrote letters to the Scientologists offering to send our kids to spend a weekend with them without their meds. We figured that would make believers out of them. But they never responded.
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masshole1979 Donating Member (172 posts) Send PM | Profile | Ignore Sun Nov-28-04 05:59 PM
Response to Reply #101
102. ...just do a google search on adhd...
...most of the stuff on adhd on the web is anti-add garbage that in most cases can be traced back to 1) someone with a financial interest in a "natural remedy" endeavor (whether the pills or a book or a "nonprofit" etc.); 2) Scientology. Just go to the "about us" page and keep following the links on the "about us" pages from site to site till you get to either the Scientologists or some vitamin peddlar who's ultimately responsible.

The worst is they're winning the war of ideas; possibly most DUers believe this scifi mind control garbage. And you don't think all this crap about Adderall and Ritalin being Schedule II doesn't have anything to do with this? When you can go on the web and buy enough sleeping pills or Valium to kill a horse?

I recently read an article in which the Scientologists were in Mexico trying to roll back that country's relatively progressive stance on ADHD (by world standards).
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RagingInMiami Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-06-04 08:22 PM
Response to Reply #102
106. Hey Masshole
I got ADD too and my life is a constant struggle. Check out this link.

http://www.addforums.com/forums/index.php?
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Sugarbleus Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Feb-07-05 09:31 PM
Response to Reply #106
120. Butting in here to ask a question..
It is highly likely that my adult daughter has add or adhd combo. She is yet to be thoroughly diagnosed (after all these years). FINALLY got a date set with a p.doc.

Can any of you tell me whether medicines are helpful for this condition--that is, to calm or center an ADD person's racing thoughts etc?

Or is the solution to just learn to manage the condition? Or BOTH?
She just started college; it's a big step for her but I worry a little bit whether it will overwhelm her without some sort of "help".

All info appreciated. Thanks SB
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pop goes the weasel Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Feb-12-05 11:32 AM
Response to Reply #120
124. I have ADD
undiagnosed as a child, because back when dinosaurs ruled the earth, kids with ADD were diagnosed as "daydreamers" or "troublemakers."

My experience is that medication is useful in calming the adult brain down so that it can learn new things, and that therapy is necessary so that the new things we learn are better habits. The two sort of need to come together. After that, she can see how she does without medication, if she wants. I'm not using the meds any more (though I do drink a great deal of coffee, so it's not like I'm not still pumping stimulants).
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REP Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-25-04 08:47 AM
Response to Original message
95. Kidney Failure (FSGS)
I have numerous other serious chronic illnesses, but the kidney failure's the big one.
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bobthedrummer Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-25-04 12:17 PM
Response to Original message
97. Multi-system disabilities here, disabled since 2000, 55 years old.
Spondylosis, small fiber neuropathy, herniated disc @C-7, left and right hand carpal, fibromyalgia, bilateral arm syndrome and other stuff.
:hi:
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Slyder Donating Member (191 posts) Send PM | Profile | Ignore Thu Nov-25-04 09:15 PM
Response to Original message
98. MD here
I've had something like muscular dystrophy for 50 years. Doctors told me not to go to college. Said it would be a waste of money since I was not going to live long. Three degrees and a 30 year professional career later, I still go to work everyday under my own power. No definitive diagnosis. I've recently seen the best doctors and they haven't a clue as to what I have.
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happynewyear Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Nov-25-04 09:47 PM
Response to Reply #98
99. welcome to the DU Slyder!!!!
:hi: and Welcome to the Democratic Underground.

I hope they can someday tell you what your real diagnosis is. I know how frustrating it is!

Take care of yourself (sounds like you are doing a great job of it!). :D

:kick:
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CraftyGal Donating Member (602 posts) Send PM | Profile | Ignore Mon Mar-26-07 02:23 AM
Response to Reply #98
195. I have the same issues.
I was diagnosed with Fascio-Scapular-Humeral Muscular Dystrophy when I was 12, I am now 41-42 in June. Two years ago my neurologist decided to take a blood test, there was no genetic marker for the FSH-MD. We still do not know what is going on. It looks like it could be Myotonic Dystrophy which would explain all the pain that I have had. This had been misdiagnosed as arthritis. I wish they could find some answers for me, as I have 3 children, with the middle child having even worse symptoms than I do.

Crafty :argh:
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KamaAina Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-06-04 03:35 PM
Response to Original message
105. Another DUer with autism (or Asperger's) here
It's kind of tough for the docs to decide which. The differential Dx relies on IQ subtest scores. But, you see, both of mine are off scale, so they can't tell which is higher :-)

This post comes to you from a Center for Independent Living, where we work towards a society accepting (we'd settle for grudgingly tolerant :-) ) of people with all disabilities.
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Deja Q Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-06-04 09:27 PM
Response to Original message
107. I believe I have Asperger's...
I nearly lost my last job because of stupid mistakes and such. I've had problems all through my life but never got correctly tested. Quackpots decided I was schizophrenic, amongst other things, even at age 15. :eyes:

I am seeing my shrink tomorrow, I hope she listens.

I do have a neurologist referral as well, so I might use it if necessary. But while I have a job with insurance, I am going to get myself tested.
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Lenape85 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-15-05 07:30 PM
Response to Reply #107
117. I have it too
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lightningandsnow Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-09-07 05:58 PM
Response to Reply #107
208. Damn...
Know what that feels like. I went to a naturopathic/homeopathic doctor when I was little, for "Behavioral Issues" and chronic ear infections, and she decided I was allergic to corn, tomatoes, dairy, chocolate, and sulphites, among other things. I didn't eat any of those for about 2 years...and, as it turned out, I wasn't allergic to any of those things except for the sulphites. And the corn/tomato/chocolate/dairy-free diet did nothing to cure the "behavioral issues". And I'm pretty sure I just outgrew the ear infections.
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AuntiBush Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-07-04 05:22 PM
Response to Original message
108. Disabled - Right here
But, back in college full-time working on degree. I intend to give back, regardless of being fully disabled; but have much ampathy for my fellow disabled Americans as we're going to need one another's support in 2006 when our benefits head for a all new low! College benefits have been hit since Sept 2004 and hit again for Jan 2005. I know first hand about Bush crap!
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Catbird Donating Member (633 posts) Send PM | Profile | Ignore Thu Dec-23-04 01:10 PM
Response to Original message
110. Invisible MS
I was diagnosed with MS about 10 years ago. It has not progressed very fast, and I am still at work (although slower than I used to be). I use a cane, but my other limitations are not immediately obvious. I have chosen not to use MS drugs at this time.

It was a shock to find out that I had an incurable disabling disease that I had previously only read about in magazines. I went into the Department of Motor Vehicles bathroom to cry after getting my first placards. I have since learned a great about living with (and around) the limitations. And I no longer live in the dichotomous world of healthy/disabled but a much more diverse world where everyone has a different mix of abilities and limitations.
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happynewyear Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-24-04 01:37 AM
Response to Reply #110
112. welcome to the DU Catbird!
Sounds like you and I have a lot in common! Message me sometime so we can discuss further. I won't take those drugs either and I'm going on 10 years here myself.

Glad to see you've joined the DU and I hope to see you around.

:D

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Catbird Donating Member (633 posts) Send PM | Profile | Ignore Sun Jan-09-05 03:59 PM
Response to Reply #112
114. Welcome
Thanks for the welcome. I can't send you a private message at this time -- not enough posts.

Later . . .

:hi:
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fight4my3sons Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Oct-15-05 09:55 PM
Response to Reply #110
129. Antiphospholipid Antibody Syndrome / Hughes Syndrome
APS is a rare blood clotting disorder. So far it has only effected me while pregnant and recently with migraines. I had two miscarriages before being diagnosed. Then had to be treated with blood thinner (Lovenox) and a baby aspirin while pregnant. I was able to have three healthy children, a three year old and 16 month old identical twins, all boys. The last pregnancy I was diagnosed with HELLP Syndrome and almost died from liver failure. So we decided three kids were enough. I take an aspirin daily for life. Recently I have started Topamax to help with Migraines that I was getting 5-7 days a week. There are all kinds of symptoms of APS ranging from headaches, tingling in the extemities, stroke, TIA, brain fog, a lacy rash, MS type symptoms, and various other things. It is also called Hughes Syndrome.
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caledesi Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Sep-04-06 04:10 PM
Response to Reply #110
176. Same here. Over 50 and went to 3 neurologists and had a
bunch of MRIs which SHOWED lesions. Still, they would not diagnose me. I am dizzy and have no balance, do not drive anymore., had to give up my small business....oh hell, you know what it's all about.

There is an excellent forum called BRAINTALK COMMUNITIES where there is a bunch of info on MS and nice people.

Meanwhile, see a disability lawyer. I got my disability after 2 years of fighting for it.

PM me for details. Got a great lawyer in Tampa.
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onefreespiritedchick Donating Member (846 posts) Send PM | Profile | Ignore Thu Dec-23-04 09:05 PM
Response to Original message
111. Just checking in!
Fibromyalagia, back disorder, vertigo
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Mojorabbit Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-11-05 06:01 PM
Response to Original message
115. MS here n/t
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LA lady Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-05-05 07:41 PM
Response to Reply #115
137. MS??
I have been to over 20 doctors in the last 8 months. I started out with double vision, hearing went (diagnosed with severe hearing loss, hearing aids would be $6000), terrible weakness, vertigo, headaches, etc. My workplace was so kind, they held on for me through all my sick leave, FMLA, and then others stepped in and worked for me till they had to replace me. They say I have a job there when and if I can ever come back. Many symptoms cleared up, I am left with bad peripheral neuropothy and deafness. I have had multiple CT scans, MRI's, MRA's, so much blood work that I am dry, vision tests, on and on. I am in rehab now but can only drive a few miles from my home and don't dare go out at night - I am totally unable to walk in the dark.
I finally got in with LSU's neurology department and they called last week to say they are 90% sure it's MS but I have to go have a lumbar puncture.Two other neurologists said it wasn't MS but LSU has a great reputation.
Have been turned down for SS and my private disability insurance, they both say I am able to perform my job!! I am waiting for a final diagnosis to appeal.
Thanks for letting me vent.
I am unusual for MS, I am over 50 and it has not relented since it struck.
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caledesi Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Sep-04-06 04:04 PM
Response to Reply #137
175. MS - Over 50...no one will diagnose it but I got diability.
I got refused twice and thought I would never get SSDI. My husband worked with someone who worked for Disability and told him to have me keep trying because they want you to go away. I didn't.

Go to a diability lawyer. Well after 2 years I did. PM me for details. Got a great SS lawyer in Tampa.
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RadicalMom Donating Member (734 posts) Send PM | Profile | Ignore Thu Jan-13-05 03:17 AM
Response to Original message
116. Amputee for one year, not walking yet, but just got my prosthesis.
Just discovered this forum, glad to find y'all.
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Spider Jerusalem Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-17-05 10:11 PM
Response to Original message
118. Asperger's Syndrome here.
Recieved my "official" dx in 2003. I'd been misdiagnosed as ADHD at age 9, and didn't even know there WAS such a thing as Asperger's until I saw an article on it in Wired in December 2001...there was a test in the article, and I score something like 47 out of 50, which made me think "hmm, maybe I ought to look into this". Currently on SSI, and looking into going back to school to complete my degree.
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motherbell Donating Member (15 posts) Send PM | Profile | Ignore Fri Jan-28-05 12:55 PM
Response to Original message
119. Many disabilities
I myself have asthma and am in need of surgery for my knees.

I have a daughter with FAS who is 21 soon to be 22 who is being kept by a right wing church at this moment. This is because she could not get her way at home and found the best place to complain about me.

My second daughter 18 has Rett Syndrome.

My third daughter is 16 and is autistic.

My life partner is suffers from manic depression.

I have a very big interest in medicaid cuts. I live in Ohio, and Taft is on a rampage to cut it to the core.
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jillan Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Mar-17-06 12:14 AM
Response to Reply #119
159. Wow! I didn't know this group was here!
I have an 18 year old daughter with a rare genetic condition...

and I am petrified of how this administration is
effecting her quality of life.

It's so nice to find all of you :hi: :hi:
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bratcatinok Donating Member (786 posts) Send PM | Profile | Ignore Thu Feb-10-05 07:22 AM
Response to Original message
122. Me! I'm here!
Ooops! Am new to this forum so posted a 'hi' thread. Sorry!
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pop goes the weasel Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Feb-12-05 11:36 AM
Response to Reply #122
125. for shame!
Being unlike everyone else! And in a disability forum, too! :)

I never posted an introduction at all, just because I would feel whiny if I put everything down.
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sacxtra Donating Member (202 posts) Send PM | Profile | Ignore Tue Feb-15-05 07:28 AM
Response to Original message
126. Unauditable Electronic Packets, Data, Insecure modems, networks for ALL
Edited on Tue Feb-15-05 07:30 AM by sacxtra
It doesn't matter if your disabled or not. (I am not.)

I want everyone to understand something.

1.) ALL electronic voting machines mean unauditable electronic packets and data across insecure modems and networks.

Even with VVPB the data can be hacked, and changed, and if nobody complains the PAPER will never be counted.

Please don't support Legislation, BILLS, or ACTS that ignore #1 above. If data travels that way, someone will try to manipulate it.

I am starting to loose hope.

I see what appears (to me) a majority of DU'ers supporting bills that do not seem to address #1 above. It's IMPORTANT to me, that the disabled can vote just the same as the non-disabled. Just don't ignore #1 above because you might not understand something that technical.


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scarlet_owl Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-09-05 11:48 PM
Response to Original message
127. Checking in.
I have bi-polar disorder and anxiety issues. I am unable to work and am on disability. It's pretty rough. My problems keep me from living my life the way I want. I guess that's about it.
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zonmoy Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-12-05 07:14 PM
Response to Original message
128. like you I am an aspie
Edited on Wed Oct-12-05 07:16 PM by zonmoy
although I have also been diagnosed with both a general personality disorder and attention deficit disorder.
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Name removed Donating Member (0 posts) Send PM | Profile | Ignore Sun Oct-23-05 01:59 AM
Response to Original message
130. Deleted message
Message removed by moderator. Click here to review the message board rules.
 
Wiley50 Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-23-05 03:14 PM
Response to Original message
132. Disabled Sailor
got my SSI this summer.It took 3 years. Spent what was left after paying lawyer on 28 foot sailboat to live on. Just sailed it from eastern Long Island through NYC, down the coast,up the Delaware river, across the C&D Canal and down the Chesapeake to VA. Couldn't have done it without my pain patch. The pain patch I must now get off of since the powers that be in VA have decreed that only cancer patients will wear them here.
Anyone on pain management too?
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oneold1-4u Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Oct-29-05 03:57 PM
Response to Original message
133. Subject- -benefit cuts
Disabled Jan.'95. Began helping friend with many worse disabilities, (4 heart attacks, degenerative disc D, COPD and other) who was diagnosed diabetic last year. I have been paid to be her care provider for 4 years as a live in 24/7. Have had hours cut to the point that it is not worthwhile to remain her CP. My own personal benefits are worth more than than 14 hours a week, now allowed. This cut was last month and they plan to cut many more from care in the future!
Taking on care of a friend for pay, means paying own medicare, own Rxs and 20% of all medical and hospital. It also means paying vehicle and transportation costs and all personal foods and needs. Low income housing subsidy that they will now have to pay for my self, alone, amounts to more than what they now want to pay for hours. Should they (government and state)now have to pay for assisted living for friend, it will cost 5 times more!
The govt. wants everyone to "help themselves" but god forbid you help a friend!
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Ioo Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Oct-29-05 09:39 PM
Response to Original message
134. Me - Disabled Vet Here...
I was broken while on duty
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Union Yes Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Apr-13-10 07:33 PM
Response to Reply #134
247. +1 me too. nt
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oneold1-4u Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-30-05 09:04 PM
Response to Original message
136. The miracle place
Edited on Sun Oct-30-05 09:40 PM by oneold1-4u
In finding others, we do not look for the man who had no feet, but only to know that we are not ever alone! The world, environment, labors, disease, drugs, accidents, wars, and life over years, all take their toll from the human body, mind, and spirit every day.
Can we look at tomorrow with the sun on our faces? Can we join to find one alternative somewhere somehow? I have resources available to construct a small (to begin with) friendly, alternative to daily life existence. I am an avid camper, and my idea would be a place where all disabled would be welcome to enjoy nature, sing around a campfire, go to their own personal extremes, and still be within reach of medical emergencies. Only a suggestion, but response would be appreciated. Enough response and I will roll the ball. I need help here! I could use someone willing and with ability to write for grants, someone willing and educated to do financial (legal) accounting and any other legal advising appropriate for a non-profit enterprise. Also needed would be co-conspirators with many more ideas! Conspirator, means only beating the system that says "disabled means you don't count"!
Oldorpioneer@yahoo.com
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William Bloode Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-08-05 07:17 AM
Response to Original message
138. Wow i just found this section of D.U.
Nice a place for us disabled folks.

My disability would be spinal injury that resulted in herniated discs, that led to surgery, that led to more problems lol!

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ThingsGottaChange Donating Member (805 posts) Send PM | Profile | Ignore Tue Nov-08-05 03:53 PM
Response to Original message
139. Well, I guess I'll check in now
I am on SSDI for major depression and anxiety disorders. I hate my life. Aren't you glad I'm here!
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ProudBlue08 Donating Member (29 posts) Send PM | Profile | Ignore Thu Nov-10-05 01:16 AM
Response to Original message
140. New, checking in
College student. I have had Cerebral Palsy since birth.
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Humor_In_Cuneiform Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-15-05 08:13 PM
Response to Original message
141. Present
:hi:

On SS disability for a number of ailments, impairments.
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mrcheerful Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Nov-21-05 09:13 PM
Response to Original message
143. Secondary cerebral palsy due to
a car accident when i was 5. Dislocated disk in upper back from a motorcycle vs car accident in 90. Crushed left foot with the last 2 toes amputated from a motorcycle vs car accident in 92. Yeah I know, I like getting hit by cars it seems, 6 so far. The 92 accident I had 2 cars hit me at the same time. Hey we all need hobbies you know. Needless to say it now takes 15 minutes to walk 100 yards. My right arm and leg are down to less then 25% useage, so I make the best of things the best I know how.
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Odin2005 Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Nov-27-05 10:04 PM
Response to Original message
144. ADHD and Asperger's
Edited on Sun Nov-27-05 10:04 PM by Odin2005
I was diagnosed with ADHD in '92 when I was 6; diagnosed with Asperger's at 15. But I am also very smart (IQ 140, got straight A's last semester in college). I HATED school. It was mostly busywork, and I also knew all the stuff before we learned it in class (except math, I SUCK at manth, I HATE math). I got in trouble because I knew more than many of my teachers, and got too cocky about about it (we Aspies realy suck at social skills). :crazy:
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goddess40 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-07-05 01:51 PM
Response to Original message
147. My son's have NLD and I'm arthritic
I got hurt at work and developed arthritis in my back. I was pregnant with my first child at the time of injury so my employer had to wait until I delivered to x-ray and CAT scan my back. They gave me full disability. I found out later they were setting up to fire me - I was a great union steward and they didn't like that. (I was the first pregnant correctional officer the institution knowingly sent in to cell entries.)

Both of my son's have NLD (Nonverbal Learning Disorder)a form of autism. The youngest is borderline asperger's.
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soliddemocrat Donating Member (42 posts) Send PM | Profile | Ignore Fri Dec-16-05 10:31 PM
Response to Original message
148. I'm disabled as well in many ways
Hello Everyone, I'm epileptic with partial complex seizures and some grand Mal's i've had them since birth but didn't know about them until i was 8 months old which was when i had my first seizure. I also have depression/anxiety disorder which i was diagnosed with when i was 19 or 20 years old when i was getting out of MCTI (michigan career technical institute). And i also have a social disability and a form of autism called aspergers syndrome that i was diagnosed with at the age of 21. People call us aspies, it's a positive nick name meaning "artist" or "intellect" :) . I also have a genetic case of the prostate infection which is caused by too much caffeine, alcohol or sex. For me it's the caffeine and sex, if i have too much of either of them i get this burning feeling whenever i try to use the restroom :-( . I also have a urinary tract infection and a weak pelvic floor, i hear drinking alot of cranberry juice helps get rid of that problem. But ever since my urologist put me on these antibiotics to help get rid of the prostate infection it did more harm than good and it ended up getting rid of all the flora in my intestines and so now i end up with a near constant case of stomach flu. I need to check in to see a doctor to see what the problem is and see if i can get it cured. So anyways that's all for now, feel free to drop me a line. I hear taking seaweed vitamins helps cure the prostate infection though. I hope to hear from you soon,good luck in all you do.
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AirmensMom Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-21-05 06:59 AM
Response to Original message
150. Multiple Chemical Sensitivity here.
I'm on disability and pretty much house-bound. Hi, everyone! :hi:
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MiwSher Donating Member (112 posts) Send PM | Profile | Ignore Wed Jan-25-06 11:05 PM
Response to Original message
152. Disabled in Canada
I'm paraplegic (born with spina bifida) and also suffer from clinical depression.

MiwSher
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Catffienated Donating Member (11 posts) Send PM | Profile | Ignore Thu Jan-26-06 08:48 PM
Response to Original message
153. Me too!
I got Asperger's Syndrome, bipolar disorder, ADD, and schizo-affective disorder. But I don't consider my AS a disability, I consider it a difference. Just like blue eyes unstead of brown.
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tulip Donating Member (344 posts) Send PM | Profile | Ignore Fri Jan-27-06 09:35 PM
Response to Original message
154. Tarsal Tunnel Syndrome
Nice to meet you all.
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Seagull Donating Member (2 posts) Send PM | Profile | Ignore Sat Jan-28-06 01:47 PM
Response to Original message
155. recently went on full disability
I was born with severe asthma and Tourette's (occasional vocal tic).

14 years ago (I'm 44), I had an L3 laminectomy. Last year I had a cervical fusion (C2-C5) which I am recovering from. I also have a bulging L5 disc and scar tissue at my L3 from the previous surgery. I have numbness and tingling in my hands, constant neck pain and headaches, and my right leg and foot are constantly numb. I have difficulty walking and have a severe limp, due to the nerve compression at the L3 and L5. I have spinal stenosis which aggravates the problem. The medication I am on (Neurontin) has really made me forgetful and slow.

Does anyone take Xolair for asthma? My Doctor has me on it and I wanted to know what others think about it.
I have some worries about it, since it is a brand new drug, but there are few alternatives for those of us with
really bad asthma. The steroids have done horrible things to me.
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DeltaLady Donating Member (116 posts) Send PM | Profile | Ignore Wed Mar-15-06 05:22 PM
Response to Original message
156. Greetings friends
I was born with beta thalassemia, a blood disorder in the same family of diseases as sickle cell, the third child of an rh negative mother and rh positive dad. Numerous blood transfusions later I contracted hepatitis C. I knew I was sick and went from doctor to doctor trying to find out the cause and cure. In 1992 they finally had the correct answer; moderate to severe cirrhosis caused by hep C and aided by thalassemia...by the way, you need a liver transplant asap...

I underwent 9 months of ritual torture by interferon and was a "non responder." Because of my overlapping problems, my hepatologist told me to "enjoy what time you have left" and did not encourage transplantation. I researched my buns off, changing my diet radically. Working on my emotional health has been another battle, but I'm still hanging in there. Recently, all the anxiety caused by losing my home and everything in it to Hurricane Katrina has brought on more frequent episodes of "liver quiver" (severe chills, joint pains, tenderness around the liver, exhaustion, etc.) but I'm hoping they will subside somewhat as my life comes together again.

Best regards to all,
Delta

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NMMNG Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-16-06 02:11 AM
Response to Original message
157. Bipolar, Chronic intractable migraines
While I'm able to work I'm limited in what I can do. I've attempted management/administrative positions in the past and done ok in them for a few years (2-5). The last adminstrative job I had led to a suicidal depression and near nervous breakdown (although there were numerous mitigating circumstances that helped that along). Ultimately the constant stress gets to me and I end up back where I am--low paying work that requires me to have multiple jobs just to survive.

I just consider myself lucky I'm able to work at all.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Mar-16-06 10:30 AM
Response to Original message
158. Checking in!
With permanent injuries to my knees and back. Chronic pain. Chronic respitory problems.

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AGKISTRODON Donating Member (290 posts) Send PM | Profile | Ignore Sun Mar-19-06 07:38 PM
Response to Original message
160. COPD
COPD, chronic depression, borderline drunk, older and uglier than dirt, that's me! :hurts:
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North-Going Zax Donating Member (3 posts) Send PM | Profile | Ignore Mon Mar-27-06 03:54 PM
Response to Original message
161. I have PDD-NOS
But that hasn't stopped me from getting an eduction and persuing my goals.

Some good basic information on autistic spectrum disorders and PDD-NOS:

http://www.nichcy.org/pubs/factshe/fs20txt.htm
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MaryBear Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Apr-11-06 10:10 PM
Response to Original message
163. PD
nt
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Karenca Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-02-06 06:30 PM
Response to Original message
164. Hi
I was standing on the sidewalk when a speeding car lost control and slammed into me throwing me 60 feet......
Some of my injuries were::
Traumatic brain injuries
Spinal cord injuries C1, C2, L4 AND L5
Lacerations of the liver
Nerve entrapments, both arms
Compound fractures, tibia and fib (steel implants)
Crushed foot (recontructed with cadaver bone......looks weird)
Crushed bones in the ear, responsible for hearing and balance.

I could go on, but what the hell.....I'm doing fine.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-04-06 09:23 AM
Response to Reply #164
165. Wow. You must have the constitution of an ox
to come through all of that and now be doing fine.
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Karenca Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-04-06 04:37 PM
Response to Reply #165
166. That's what I've been told.
At that time my family was told that at the very least I was to be a paraplegic, more probably a quadraplegic, and that I definitely would never regain most of my memory or be able to take care of my child. They were ready to take him away from me.

Thank you for the compliment.
:-)
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emald Donating Member (718 posts) Send PM | Profile | Ignore Mon May-08-06 10:25 AM
Response to Original message
167. 80% rated by VA and 100% unemployable
now wasting my life doing nothing. Depression is my work, my struggle. GWbushit doesn't help matters.
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greccogirl Donating Member (566 posts) Send PM | Profile | Ignore Thu Oct-19-06 08:56 PM
Response to Reply #167
182. Me, too.
I waited FOUR YEARS for a transplant where I live and in desperation went to Mayo clinic in Jax, they saved my life. Unfortunately, I've had over the past five years: Two hernia surgeries, fluid drained off my stomach weekly, 11 operations on TIPS Shunts, weekly injections of blood and albumin, and 6 serious cases of cellulitis, all of which necessitated hospitalization. And I WORKED through it all until the last six months (a stupid error as my company did away with disabiity retirement while I was dragging myself to work).

Had transplant 2004 - ten days hospitalization with cellulitis, discovered malignant tumor on liver, had chemo, transplant, one rejection, lung was nicked during biopsy and cavity filled up and collapsed lung; two weeks on chest tubes, double pneumonia after transplant - 42 days hospitalization for just the transplant, 172 days since 2000.

I am 100% better - but now dealing with fibromyalgia, osteo-arthritis made worse by anti-rejection meds, both knees and one hip shot, and still have severe leg edema when I try to walk around or live normally. Have terrible brain fog - and went back to work last August (I'm an idiot) and lasted two months - fell down and broke right shoulder, cracked three ribs and now have a bad herniated disk in my neck........................

Hubby fell off two story building in the 80's and broke back in 9 places - but he can still walk.
We joke together we make a whole person. But I'm here!!
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Courtesy Flush Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-09-06 11:32 AM
Response to Original message
168. I'm not disabled
I really hate the word "disabled". I'm the most able person I know. I am restoring a big old house without contractors. I can paint portraits, build things, etc. etc. But the world really does see me as not abled, because I only have one leg.

I was born with PFFD. I had no hip joints, and finally got one artificial hip when I was 40. Now I have an artificial leg on one side and an artificial hip on the other.

So no. I'm not disabled. But it's okay to call me a cripple. I like that.
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silverojo Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jan-12-07 01:59 AM
Response to Reply #168
190. Well, I prefer "disabled"
I'm tired of people acting like people with FMS can lead normal lives, when the majority of us CAN'T. It's not like being crippled; there's no crutch that can help you get around it when your brain itself is causing your body to have pain and bizarre symptoms that nobody understands. :(

Yes, I'm DISABLED. I maintain a positive attitude, but part of that is realizing my limitations, so that I don't injure myself by trying to exceed them.
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Liberalynn Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-19-06 09:15 PM
Response to Original message
169. I am disabled
Edited on Fri May-19-06 09:19 PM by Liberalynn
due to chronic depression, and anxiety disorder which manifests through OCD symptoms. I also had some PTSD symptoms related to the corporal punishment and verbal abuse during my parochial school years.

I had a nervous breakdown on my job of ten years, around 1998. I tried other temp jobs after and even went through a state education run back to work program but was unable to return to work successfully.

I have the tendency to check things over and over like phone messages, at my old place of work it was the alarm system and the front doors. When the fear gets really bad, I feel like running away.

I am in therapy and am taking Paxil and an anti-anxiety drug, and while I have had some success against the depression the anxiety is still overwhelming and debilitating.

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hashibabba Donating Member (894 posts) Send PM | Profile | Ignore Sun May-21-06 01:45 PM
Response to Reply #169
170. Bipolar, Generalized Anxiety Disorder, ADD...
I suffered from verying levels of depression for as many years as I can remember. Finally in 1996 (or somewhere around then, that whole several years of my life are a blur) I had a nervous breakdown. I now take 5 medications (the mood stabilizer I take is Zyprexa...works for me but can cause *spontaneous* diabetes!).

My *highs* are few and far between. I get hypomanic, so mostly the depression manifests itself in my life. Sometimes I do pretty well, others I don't do well at all. I seem to have lost all ability to handle stress.
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Liberalynn Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-22-06 09:43 AM
Response to Reply #170
171. I know what you mean about handling stress.
Though I have gone through two group sessions of DBT coping skills, and some have helped with minor every day things, I still have extreme difficulty coping with the larger stressors.
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Ayesha Donating Member (587 posts) Send PM | Profile | Ignore Sun Jun-04-06 12:48 PM
Response to Original message
172. Cerebral palsy
thanks to a negligent doctor. I use a power wheelchair, am finishing my Masters degree in psychology, and live with my lovely partner who has Chronic Fatigue Syndrome and Fibromyalgia. She's more disabled than I am in many respects. We have five dogs, a cat, and a pretty good life despite our challenges.
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undergroundpanther Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-12-06 12:11 AM
Response to Original message
173. It's amazing to see how many people
are here....So many types of being,so many,and so strong.
Thanks..I gathered some sayings that captured what I felt seeing all the names of people checking in...

For ethics to matter to us, the happiness and suffering of others must matter to us.

It is no measure of health to be well adjusted to a profoundly sick society. Krishnamurti (1895-1986)

"One of the great delusions of our time is that a service system can produce care. All kinds of systems steal this human word.In doing that, they put the mask of love on the face of control."John McKnight


"We will no longer attempt to prove how reasonable we can be. We will go before them, face to face, to fight for our freedom.We will not be held hostage to their administrative efficiency. We will not keep to our place. We will never again be put away. We are freedom fighters now. And this is war." Mouth Magazine.

The quintessential revolution is that of the spirit,
born of an intellectual conviction of the need for change in those mental attitudes and values which shape the course of a nation's development. A revolution which aims merely at changing official policies and institutions with a view to an improvement in material conditions has little chance of genuine success. Without a revolution in spirit, the forces which had produced inequities of the old order would continue to be operative, posing a constant threat to the process of reform and regeneration.It is not enough merely to call for freedom, democracy and human rights. There has to be a united determination to persevere in the struggle,
to make sacrifices in the name of enduring truths,
to resist the corrupting influences of desire, ill-will, ignorance, and fear.
Aung San Suu Kyi (b.1945)Burmese Dissident 1991 Nobel Peace Prize Winner

...The Universe is thronged with fire and light,
And we but smaller suns, which, skinned, trapped and kept
Enshrined in blood and precious bones, hold back the night.
Ray Bradbury (b.1920)

Keep on holding ..and thanks..






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Courtesy Flush Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Aug-20-06 10:10 PM
Response to Original message
174. Orthopedic stuff here
I was born with PFFD, which resulted in amputation. I have an artificial leg on one side and an artificial hip on the other (I was born with no hip joints). Still, I'm active and productive.
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fladonkey Donating Member (100 posts) Send PM | Profile | Ignore Mon Sep-25-06 12:21 PM
Response to Reply #174
177. My husband....
has end stage kidney disease. He is on 3 times a week dialysis. He 'caught' this horrible disease by working at the Stromberg-Carlson plant in Lake Mary, Florida. They used the same toxic chemicals that were used at the Hinkly, California plant featured in the movie "Erin Brockovich". We won a settlement but he is now on Disability. My husband is very active. He goes to bridge class on Mondays, Spanish class on Tuesdays, he volunteers at the Orlando Science Center as a storyteller and in the observatory. Besides my day job I have 3 at-home businesses and he helps me as he can. He also goes to a lot of events during the day time. He could find a part-time job but he is often so tired after dialysis that I told him not to worry about it. He worked for almost 35 years so its not like he was a slacker.
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Sir Aunty Christ Donating Member (2 posts) Send PM | Profile | Ignore Wed Oct-11-06 08:23 AM
Response to Original message
178. I'm disabled
I have Spina Bifida and Hydrocephalus. Those things slow me down (a lot) but I'm still doing my best to get a degree in Modern History and Politics.
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ThomCat Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-12-06 11:14 AM
Response to Reply #178
179. Welcome to DU!
:hi:

You've got a name that's going to inspire some conversation. :)
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Ladydawnelle Donating Member (122 posts) Send PM | Profile | Ignore Sat Oct-14-06 03:38 PM
Response to Original message
180. Thyroid & Heart disease and Uterine Prolapse
On disability Since 97

awaiting stem cell research - (I know, I know, good luck with this administration)

:-\ If I had caught the thyroid problem a year earlier it would NOT have affected my heart. Too bad my employer didn't provide adequate medical insurance for annual physicals including blood work. The uterine thing happened later. All the rat poison I take has thinned literally ALL of my organs. My appendix fell apart 2 yrs ago. That sucked too.

but I try to enjoy each day (and do generally) until I pick up a newspaper or turn on the news then Im also ANGRY on top of falling apart. LOL sigh. yea oh well it could be worse I could also have cancer (mammogram next week) fingers crossed!

I started a group at the DNC blog called Disabled Democrats if anyone goes there. It's part of the Party Builder Program. fyi. www.democrats.org

Peace!
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greccogirl Donating Member (566 posts) Send PM | Profile | Ignore Thu Oct-19-06 08:45 PM
Response to Original message
181. Hi there.
Alpha One Anti-Trypsin, Liver Transplant 2004, Osteoarthritis, Fibromyalgia, moderate to severe leg edema. Both knees need replacing, one insufficiency fracture of hip already. Anti-rejection meds cause HBP and damage to kidneys (take a lot of water pills). My disability company is reviewing me for the third time this year.
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alfredo Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-31-06 05:30 PM
Response to Original message
184. Arthritis, three bad disks ( C 4-5-6) in my neck. PTSD, Crohn's
migraines. I'm rated at 100% for some reason.

I still can walk and talk, but my arms are weak and I have had constant muscle spasms in my upper back and neck. The walking and talking come in handy. I can't work above my shoulders, can't reach, can't lift over 30 lbs.
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vietnam_war_vet Donating Member (60 posts) Send PM | Profile | Ignore Tue Nov-07-06 12:21 AM
Response to Original message
185. 10% VA service-connected for left ulnar nerve damage plus.....
-- osteoarthritis in lower back, right hip, left knee, right ankle, and both shoulder joints;

-- from osteoporosis, compressed and compromised lumbar section of my spine (starting at T12-L1 all the way down to L5-S1). Every disc is either herniated or bulging. Bulging also resulted in spinal stenosis (pressing inward on my spinal cord);

-- type II adult onset diabetes (DMII) since 1994. Despite my being on the VA's Agent Orange Registry since 1990, the VA has denied my comp claims for DMII twice since 1995. I had two different service officers (VVA first claim, DAV second time), plus the office of U.S. Senator Jeff Bingaman (he's my senator plus he's on the committee that controls the VA's budget), but to no avail. VA has also denied my claims for AO-caused chloracne four different times. I have bodywide scarring.

According to 3 surgeons (one orthopedic and two neurosurgeons), if I didn't instruct and do aquatic therapy and exercise classes 12 hours a week, I would have been wheelchair dependent years ago. My walking range is limited, but bottom line....I can still walk. -- Michael

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Roarin Donating Member (21 posts) Send PM | Profile | Ignore Fri Nov-10-06 02:00 PM
Response to Original message
186. Fibromyalgia. Partner has Asperger's. I care for CP Kids.
Edited on Fri Nov-10-06 02:05 PM by Roarin
Hi all,

Registered Nurse with a minor in Psych. I'm not totally disabled. But I have an uphill battle everyday.
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sniffa Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Nov-15-06 10:20 AM
Response to Original message
187. aLLo
Lost the majority of my hearing at age 4.
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Ezlivin Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Nov-17-06 10:24 AM
Response to Original message
188. Spinal cord injury - T4 complete - 27 years ago today
Don't you hate anniversaries like that? Every November 17 I'm doomed to think about the car that ran me off the road and into a telephone pole.

But it was Hawaii, I was healthy as hell and having a great time...up to that point.

Oh well. At least I've got my mind.

:)

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Irishonly Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-10-07 09:38 PM
Response to Original message
189. Neuropathy and a few other things
My disability was given because of the neuropathy but I also have degenerative arthritis in my spine and pelvic region. They can never decide if I have fibro or CFS although they are both in the same category. Chemo did do lung damage and on and on. I fight to keep walking. My wheelchair sits in a corner and I try to pretend it isn't there. Today was a crappy day physically. I hurt everywhere and didn't get out of bed much.
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stuntcat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-28-07 09:23 PM
Response to Original message
191. brain damage
:p
no it's called TBI for traumatic brain injury.
I had a wreck with transfer trucks followed by 2-week coma followed by 2-months inpatient followed by 3 months of therapy to learn to read and walk and think and talk with people. But I've recovered way better than doctors thought I would, I'm lucky. I can take care of the house and the garden. I have emotional swings but it's okay, my family and cats are glad I'm here so that's what matters.
For now I do volunteer work and make stained glass arts.

.. and that's my brain damage story!!!
I should look at the list to see if there were more.
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stuntcat Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-28-07 09:38 PM
Response to Reply #191
192. oh the amnesia
the drama I left out. There are so many years (people, places, stuff I did) that I will never get back.
I have to be strong and laugh instead of cry though :+
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Cetacea Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-08-07 06:54 PM
Response to Reply #192
206. That's just terrible.
I have it too. I eventually moved out of my home town because I would run into people who I knew at the grocery store and have absolutely no recall. Very embarrassing. I never got back most of my first sixteen years. and short-term is not so great either.
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harlanh Donating Member (5 posts) Send PM | Profile | Ignore Sun Feb-11-07 01:17 PM
Response to Original message
193. Where the 08 Candidates on Disabilities Funding?
Any opinions on the various 08' presidential candidates on research and funding for disabilities? For example, the explosion in the rate of autism (1 in 150 kids are diagnosed with some form of autism). This is a serious health crisis. But, I never hear any candidates talking about it?
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KamaAina Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-02-07 07:44 PM
Response to Reply #193
197. Excellent question. Alas, the world may never know.
I looked up all the Dems (I think we all know where the repukes stand) except Kucinich; the buzz over impeachment seems to have crashed his site.

All I could glean was that a) Richardson supports adding people with disabilities to Medicare (but he's also for forced treatment of psychiatric illness :grr: ), b) most of the candidates have splash screens that try to make you sign up with your email, and c) Hillary has no issues page at all that I could find. :eyes:

I guess that about sums up where we stand in the scheme of things. :shrug:
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MaryBear Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-26-07 12:53 AM
Response to Original message
194. Anyone else here with PD? nt
ng
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Enoch1981 Donating Member (52 posts) Send PM | Profile | Ignore Tue May-01-07 06:26 AM
Response to Original message
196. A whole mess of problems
I have what me and my mother suspect to be undiagnosed Aspergers and/or sensory integrative disorder. Presently, I'm on SSI for psychiatric problems. I was diagnosed as Bipolar...though from my research I've come to the conclusion that it's more like Borderline personality disorder. I suppose mental health professionals can't use that one when you're young (my problems started when I was 15). I'm not under any treatment at the moment...I refuse to take medication. I seem to be functioning ok all told, thankfully.

Plus, I have been saddled as of late with unexplained medical problems. In my mind, the suspects are either SLE, hypothyroidism, hypoparathyroidism (a scary one because of its causes), or some hematologic disorder. I don't feel great but I can usually go about my business during the day...but in the evening, especially on a bad day, I'm almost confined to my bed. On a cold day forget it...staying awake is a challenge, lol.

I'm usually in good spirits, though. =)
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sakabatou Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-17-07 06:43 PM
Response to Original message
198. Sure I might not be phsycically handicapped
But whatever... ^_^;
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cutlassmama Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-19-07 06:03 PM
Response to Original message
199. Many, many problems. I'm on 23 medications.
I have both psych and physical problems. My son is also disabled.
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dysfunctional press Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-25-07 01:52 PM
Response to Original message
200. i've got ankylosing spondylitis...
Edited on Wed Jul-25-07 01:59 PM by QuestionAll
it went mis/un-diagnosed for over 20 years, while i worked thru the pain, which was attributed to my work as a construction laborer. i switched to an office job, but being sedentary behind a desk all day was even worse for my condition(which had yet to be diagnosed). two weeks after i left my last job, i was in an auto accident wherein i was struck from behind while stopped at a traffic light- by an un-insured illegal alien from mexico. it was after that accident that my condition was finally correctly diagnosed...i was determined to be totally and permanently disabled, and approved for ssdi when i was 38...i'm now 47.

i also have a condition called raynaud's syndrome, that just helps to make life that much more miserable...especially in winter- when my fingers and toes tend to crack open and bleed
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cutlassmama Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Sep-03-07 11:16 PM
Response to Reply #200
205. I don't mean to sound crass, but I have a friend with that who is
stating that he will "DIE" from it. Is it deadly?
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dysfunctional press Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-19-07 11:38 PM
Response to Reply #205
213. it can cause a shortened lifespan- but it's not "deadly" in and of itself...
btw- sorry to take so long to respond.

there are/can be a lot of associated complications in a wide variety of parts of the body- many of which could lead to a pre-mature death. but i would say (in general) that it would be overly-dramatic of someone to say that they're going to "DIE" from ankylosing spondylitis...

HOWEVER- there is a wide range in the level of severity of the disease/symptoms from case to case, and without really knowing your friend or how bad he has it- it's unfair of me to cast what/any aspersions on his claims than i already may have... :shrug:
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zabet Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Aug-22-07 01:04 AM
Response to Original message
202. Here...
totally disabled to an on the job injury. Chemical inhalation (I am
the only person who has managed to live being exposed to the compounds
I was exposed to). On top of major respiratory problems I have been
diagnosed with Multiple Chemical Sensitivity, have symptoms that mirror
fibromyalgia, suffer chronic fatigue...the list goes on and on.
Have been disabled since 2001.
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Cetacea Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-28-07 11:36 PM
Response to Original message
203. PTSD (nt)
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lightningandsnow Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-09-07 08:20 AM
Response to Original message
207. Another undiagnosed aspie
I'm pretty sure I have asperger syndrome, it just hasn't been diagnosed, so people do think I am making it up.
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SlingBlade Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-16-07 02:11 AM
Response to Original message
209. Hello All, I'm down
But not out....Yet.
But I'm working on it :)

Today they installed an electronic device on my spine which is supposed to
reduce if not stop the pain. Anyone here of any experience with this ?
If you have brothers and sisters, I sure would appreciate some feed back

Man what a find, And what timing. I couldn't believe it while searching around here at DU when I came across this thread, Fantastic.
I've been down since 12/05/06, Out of work, No W.C, No nothing except three rejections from SSI.

Thanks.
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Traveling_Home Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-17-07 11:33 AM
Response to Reply #209
210. Welcome - Is that ...

like an implanted tens unit?
http://www.tens-store.com/ems/
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SlingBlade Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-17-07 11:19 PM
Response to Reply #210
211. Well they said no
But I would describe it exactly that way if I had to. For someone knowledgeable about what a
tens unit is that is.
Actually it varies in a vague way though. Im given a week to decide if it works.
It does work to a certain extent just as the Tens unit but can cover a very large part of the body. Im not sure, I'm still hurting like heck. I just don't know yet Traveling_Home.
They've scheduled the second surgery for this coming Monday the 22nd.

Thank you for the welcome, It gets awful lonely here by myself sometimes.
It's been almost a year now since I've been injured :bounce:
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Traveling_Home Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-18-07 12:26 PM
Response to Reply #211
212. Good luck on the surgery

"They've scheduled the second surgery for this coming Monday the 22nd.

Thank you for the welcome, It gets awful lonely here by myself sometimes.
It's been almost a year now since I've been injured"

I've been disabled for 54 years. After a while you become a professional gimp. There are the gimps and the TABS (temporarily abled bodied). It is a long strange trip.

Good luck with the surgery

:-)
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SlingBlade Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-21-07 01:11 PM
Response to Reply #212
215. Traveler :)
Thanks Traveler. I cant imagine what you've been going through the last 54 years. I don't know about being a professional but Ive been told my career in construction and machine repair is over, That is al Ive ever known. Scary. Good luck sir, Hope we can converse from time to time.

Just an ex-blue collar worker :(
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cutlassmama Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-21-07 05:24 AM
Response to Reply #209
214. get a lawyer that specializes in SSI. They only get a portion of your
back pay. You don't have to pay them upfront. I'm bedridden too.
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SlingBlade Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-21-07 01:12 PM
Response to Reply #214
216. cutlassmama thank you

I'm sorry about your condition which has made you bedridden.
I have, I have one to represent my workers compensation claim and another representing my SSI claim.

Ive just received word that the worker comp claim is about to be settled, At least I will get a check for all the missed work time (Almost a year), A weekly check and payment of medical bills. What a huge relief. Though the final has not been reached this is great news for me and my family,

On the SSI side Ive been turned down three times and my attorney has asked for a hearing before a judge. I don't know if that's good or bad but that's where it is now.
As I said tomorrow I go in for a third and hopefully final surgery to make this device a part of my body....We shall see. Thanks for the input, I hope You would be willing to walk me through all the red tape involved with SSI.

I'm lost ! :(
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ildemo Donating Member (43 posts) Send PM | Profile | Ignore Sat Apr-19-08 01:27 PM
Response to Original message
219. Work and SSDI
Now what I am on disability, can anyone tell me if it would be safe to work a menial part-time job for some extra cash? Like at the corner gas station?

Or will it red-flag me?

I really need a little extra money to cover the bills, but I don't want to get cut off, especially since I have only been on SSDI for a month.
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otohara Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-01-08 10:54 AM
Response to Original message
220. Post Polio Syndrome
sucks :smoke:
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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-08-08 07:47 PM
Response to Original message
221. Checking in with MS.....
I'm just going to post what I did before because it's too long. Managed to do a load of laundry today and clean the piles off my dining room table -- was very proud of myself for doing it! Tomorrow -- an actual errand! Woohoo! LOL

Like I said at the end of the other post, I'm a happy camper now -- I feel like I'm getting my country back!

Well, I had one hell of an election week. On the 30th I ended up going to the ER because I was feeling funky and was very wobbly (I have MS....have for 22 years and have done fairly well up 'til now). They did an MRI which showed a whole bunch of new MS lesions and indicated I was having an exacerbation. On top of it, I'd been on a diuretic for hypertension (first time) and it had completely thrown off my electrolytes -- I felt like crap They gave me fluids to straighten out the electrolytes and solu-medrol (high dose IV steroids -- a standard treatment for MS exacerbrations). I felt much better after 8 hours in the ER and they let me go home. My eyes had also changed significantly -- I could no longer see very well through my very expensive prescription progressive lenses -- went to the eye doc the next day and my prescription had changed dramatically (have to pick up my new lenses tomorrow -- yeah, I'll finally be able to see without a looking at blur again!)

Despite stopping the diuretics immediately and my follow-up blood tests looking like everything was going back to normal, on the 2nd, I had the same reaction to the medication (happened all over again), my BP was zooming up to like 201/104 and all of that really kicked in an ass-whooping MS exacerbation. I finally called 911 -- I was getting pretty scared by that point. By the time the ambulance got to my house, I couldn't stand up (was able to before all of this). I couldn't walk in the ER and they admitted me. Spent until 6 tonight on the neuro unit of the hospital. I finally was able to walk.....sort of. My legs were significantly weakened (on muscle grading, my left leg used to be about a 4 or 5- out of 5, my right a 4/5. Now they're both 3/5.) And I now have TERRIBLE ataxia -- very wobby & terrible balance when I walk (my balance hasn't been great for years but it was a hell of a lot better than now).

But, with all of that, I was able to watch the election until I fell asleep and woke up at 2 a.m. to hear the deliriously happy news!! I started crying when I heard it and bawling when I heard Barack's speech and the reaction all over the country and around the world. I was completely overwhelmed with happiness!!

The staff at the hospital couldn't have been more wonderful. I got to know everyone -- the CNA's and the nutrition ladies (delivered the food) were my favs, but everyone was really cool. One of the wonderful CNA's and one of the very cool nutrition ladies kept coming in my room and shutting the door to talk. I asked everyone who came in my room on election day if they'd voted -- everyone had. (Thank God I voted early!!!) Got to talking to a couple of them about Barack, including these two African-American women. A couple of people had said horrible things to them, thus the talking in my room with the door closed. One father of a patient, someone horribly disabled by a stroke, said to this wonderful young CNA who'd been lovingly caring for her patient, agitatedly said to her on election day that he had to leave and go vote because he "couldn't have a black man as his president." And to the wonderful nutrition lady, some asshole said after the election, "Well, I guess you and YOUR people are happy now." Both women were unbelievably forgiving and understanding, but also understandably shook up. I was horrified. We had nice talks and hugs -- needless to say, we were all thrilled with the election results.


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Jack Rabbit Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Nov-15-08 01:31 PM
Response to Original message
222. Clinical depression
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sakabatou Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-17-08 11:57 PM
Response to Original message
224. I'm disabled in a sense...
I'm not hadicapped like a leg or broken back, but I do have brain injuries.
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boobooday Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-26-09 09:55 AM
Response to Original message
225. Type I diabetic for 30 years - Insulin pump
Not afraid of needles.
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EPHESIA Donating Member (1 posts) Send PM | Profile | Ignore Mon Apr-06-09 12:49 PM
Response to Original message
229. DISABILITIES
:WOW:
I was on disability because of a hip replacement. It was the
worse time of my life. Waiting for checks in the mail.
Sending forms every 3 weeks. I couldnt wait to get back to
work. I need guaranteed cash in hand every 2 weeks!
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cpompilo Donating Member (125 posts) Send PM | Profile | Ignore Thu Apr-30-09 01:05 PM
Response to Original message
230. Crohn's Disease for 21 years
I'm new to DU and just found this forum yesterday while searching for info on SSD. I applied for SSD and was denied - SSD says I'm not disabled, however, I had to quit my job because I couldn't handle the physical work anymore. I intend to
appeal with an advocate or lawyer. I found lots of great info in a thread yesterday about applying for SSD.

My life was a living hell - I was finally diagnosed in 2001 - my specialist said I was one of the worst cases he'd ever seen. I did the standard medical treatment (steroids, 16 pills of Pentasa/day) for 3 years, none of which did much good. After 2 hospitalizations and near death after taking 6-MP (an immuno-suppressant)I found the Specific Carbohydrate Diet. www.BreakingTheViciousCycle.info The diet saved my life. I've been on it 4 1/2 years now. I rarely have diarrhea anymore and haven't had pain since starting the diet. I take no medication. Perhaps that is why SSD rejected me. I do however have dehydration problems - the Crohn's Disease is mostly in my large colon where water is absorbed. My colon looks like it was hit with buckshot - full of scar tissue now. I still have fatigue issues too. Crohn's is called the Wasting Disease and I can attest to that! I weighed 87 pounds for a long time. I'm now 92 pounds, sometimes more. My goal is to reach 100.

I read through everyone's post here and I feel very fortunate as some of you folks have much worse problems than I. Thanks for this thread, I appreciate it very much.
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TexasLady Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-05-09 01:23 PM
Response to Original message
231. AKA..Above Knee Amputee
Idiopathic Aterial Thrombosis. Five large clots in left leg, misdiagnosed for a month, suing.
But other than that, Im doing fine, and wow does my upper body look good after a couple months in a wheelchair!
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Maraya1969 Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jul-01-09 04:23 AM
Response to Original message
232. I have bipolar and panic disorder.
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sakabatou Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-02-09 06:28 PM
Response to Original message
233. Hey people
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Jkid Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jul-13-09 01:34 PM
Response to Original message
234. I was diagnosed with Asperger's Syndrome since sometime.
I don't know, 8 years?
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Tam3 Donating Member (7 posts) Send PM | Profile | Ignore Thu Jul-30-09 06:41 AM
Response to Reply #234
235. I have Lupus, Raynaud's DDD, OA, chronic fatigue
I had my ALJ heating June 4th and received my fully approved letter last Tues. It's a relief that the fight is finally over. I have a partner of 12 years, 3 cats. I want this darn heat wave to be over! I love the Puget Sound and it's not suppose to be this hot. We waited too long to get an portable AC unit, but now that I'll be getting my SSDI we are going to get an AC put in. It got to be 93 in our house yesterday. I hate the heat and our 3 poor cats don't like it much either, so they have been spending their time out in the outdoor enclosure we built for then, and it has shade. It's funny how 87 used to be so hot, but now it feels cooler lol.
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Name removed Donating Member (0 posts) Send PM | Profile | Ignore Thu Oct-29-09 06:00 PM
Response to Original message
236. Deleted message
Message removed by moderator. Click here to review the message board rules.
 
Azur3lupus Donating Member (3 posts) Send PM | Profile | Ignore Thu Jan-07-10 04:17 PM
Response to Original message
237. Some of you guys may have read about me...
heh, a few years ago, this topic:http://www.democraticunderground.com/discuss/duboard.ph... was added... guess what... THAT'S ME!!

i ended up having two fasciotomy's, nerve grafts, artery grafts and over 150 surgical staples...
for anyone who's NOT squeemish, have a look at the pictures... http://skin.bebo.com/c/photos/view?MemberId=3824690665&... be warned though, they are pretty gruesome..

one more thing... IM ON TEH INTERNETS!!!
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deafskeptic Donating Member (25 posts) Send PM | Profile | Ignore Sun Oct-23-11 03:14 PM
Response to Reply #237
264. ouch.
Your injuries are enough to make me wince.
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reynolds1863 Donating Member (7 posts) Send PM | Profile | Ignore Wed Jan-27-10 07:52 PM
Response to Original message
238. Checking in. :)
I have mild Spastic Cerebral Palsy and PTSD. All though I'm on disability I do lobby actively for universal health care. It gives me something to do.
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libodem Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Feb-08-10 02:54 PM
Response to Original message
240. I have partial permanent
deficits in my neck and back. So at least it's not 100% but it impacts my whole life in a very negative way.
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toolabard Donating Member (16 posts) Send PM | Profile | Ignore Wed Mar-10-10 08:12 PM
Response to Reply #240
242.  If yu have the time, please read


Let's see, permanent disability right arm injury with complications. I have 1 3/4 lungs, 6 chest tubes, one thorocotomy (sp)( They finally took out that part which kept blowing out!) Arthritis in both knees, neck, hands, losing hearing. Enough to blacklist me from ANY health insurance.
The health insurance and drug industry treat people like us the same way Hitler treated the Jews in WWII. We are different from the superior health risk category. Therefore, shoot 'em up on morphine and put them all on an ice floe! Never in the history of this country have so many people been mistreated by reason of color, preference, or health condition.
Having said this, let me state the real opinion of a neocon right-winger, that is, first you need to pump some alcohol into them.
"You people and your civil rights really disgust us. Where the hell did you GET all this crap about 'inalienable rights'? I suppose you got it from the Old Testament, correct? We believe in the NEW Testament, not that Jewish one. Listen up bleeding hearts. The only right you have when you are born is the right to die. That's it. No God came down and said, 'Ya'all be good to each other ya heah!' If you don't fight your way up the food chain, to bad! The strong survive, the weak and stupid die, end of story. There are no rights, just opportunities!!"
Pretty strong isn't it?
The thing is guys, if your 62, like me, you realize this American Dream we all thought we might earn, got tossed. Somewhere between Woodstock and Clinton, the right wingers, Wall Street, and the people we elected, screwed us out of just about everything. The only thing we have left is our hurts, our memories, and our integrity. I'm glancing at a watch a friend gave me to use for jewelry parts. It still runs, so I'll keep it as is. But it does tell me time is no longer on my side, or yours.
We have two choices. We can take whatever we can get from the govt. and hope it will be enough. Though it isn't likely. Or we can take what we can get, and fend for ourselves, and help each other like we did at Woodstock, Selma, and Vietnam.
I'm talking about the Brother/Sisterhood of our generation that watched a man walk on the moon, and saw a black man admitted to "ole Miss". We are the seed of the Greatest Generation. We knew we could do anything. Today is the proving ground of that jest. In our old age, we must help each other to the finish line. In our wheel chairs and canes, we will show this country we can still survive with some goddamn dignity!
We never got to Mars to see if Heinlein was right. But we did build a telescope that proved Genesis was wrong. We didn't make the millions "Dare To Be Great" promised. But we did learn that our grandparents were right, money IS evil. We never got that second home at the lake, but we cleaned up the Hudson, (thanks Pete Seeger). We didn't do a lot of things our kids now condemn us for. We did learn some hard lessons though. Maybe our legacy will be should be a simple song Joni Mitchel wrote, "Big Yellow Taxi" "...Don't it always seems to go, that you don't know what you've got til it's gone".
Come on guys, the young ones will probably succumb to the evil we now turn our backs on. Our best bet now is to get ourselves back to the garden. We shall tend it and each other. In the end, that's all that ever really mattered.
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mcollins Donating Member (506 posts) Send PM | Profile | Ignore Fri Mar-19-10 06:39 PM
Response to Original message
243. not as bad as some
I have stage 3 pulamary sarcoidosis and RA in both hands. It slows me down a bit but I still putter along.
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cybersleuth58 Donating Member (5 posts) Send PM | Profile | Ignore Sun Mar-21-10 08:47 AM
Response to Original message
244. I'm one, too!
I'm a disabled DUer, too. :D My issue is severe degeneration of my spine. Long story but it effects everything I do. I no longer can work and am forced to live on a little over $900 a month. Most people assume that I am stretching the truth when I tell them I am way below the poverty level. When I decline to donate to worthy causes people doubt my commitment while I simultaneously doubt their connection to reality.

Pain has been my constant companion over the past decade. I left my job as a result. I would like people to understand that I fought being forced out on disability. It was the worst day of my life. I not only lost my income - I lost my identity, my peers, my colleagues and friends. Disability is not an easy ride. The only positive to being so poor is that I qualified for Medicaid. And yes, I am ashamed of that. My $900 and change is not low enough to qualify me for food stamps. I received a few dollars COL increase last year which lowered my fuel assistance considerably. I get it, too. There are SO MANY in need and the funds for the disabled are limited. Too little money is being made to stretch to cover too many people.

I will get off of my soap box now. Thanks for the invitation to vent. I am sorry to hear that you were treated like a malingerer. Asperger's syndrome has not been the subject of any Hallmark movies or movies of the week so the general public is still pretty ignorant. Viva HBO and Temple Granden, huh? :D
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UpNorthSusie Donating Member (4 posts) Send PM | Profile | Ignore Sun Mar-28-10 12:48 PM
Response to Original message
245. Where Do I Begin?
I have been disabled for over 12 years now. I have been diagnosed with: Crippling RA, OA, Severe Osteoporosis (5 back compression fractures in 6 months), COPD, Emphysema, Digestive disorders which have required 2 surgeries and one extended hospital stay for acute Pancreatitis, heart attack, Lyme's disease, 3 strokes and Acid Reflux disease.

I've been turned down by SSI and the state of Minnesota for help. My hubby and I had to file bankruptcy because of the $200,000.00 hospital, doctor and drug bills.

I can barely get out of bed in the morning because all of my illnesses are untreated, because of no health insurance and no money.

Susie in MN
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WCGreen Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Apr-25-10 09:58 PM
Response to Original message
248. Waiting for a double lung transplant....
Been disabled since 2002...
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McCamy Taylor Donating Member (1000+ posts) Send PM | Profile | Ignore Sun May-16-10 06:34 PM
Response to Original message
249. Sleep apnea, but back at work now. (Took doctors years to diagnose me)
Edited on Sun May-16-10 06:40 PM by McCamy Taylor
Sleep apnea should not be a disability, but since 4-16% of Americans over 40 have it, and 80% have not been diagnosed, and since it contributes to a host of disabling conditions including:

1. hypertension
2. heart disease
3. stroke
4. fibromyalgia
5. depression
6. migraine headaches
7. diabetes
8. ADD


to name just a few. At this very moment, a whole bunch of folks are disabled, drawing social security and seeing a doctor regularly, and yet they have no idea that their main problem is really a sleep disorder.

If in doubt, ask your partner if you snore or stop breathing at night. And if you have 1. morning dry mouth, 2. have to get up to urinate several times a night 3. wake up with a headache or feeling groggy 4. fall asleep too easily during the day 5. have been the driver in a single car accident 6. have difficult to control high blood pressure 7. have poor concentration or 8. have erectile dysfunction think about seeing a doctor.
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ManitobaLeftist Donating Member (1 posts) Send PM | Profile | Ignore Mon May-17-10 02:31 AM
Response to Original message
250. Disabilities - Depending on Definition
I have Asperger syndrome as well. If you're counting autoimmune and respiratory disorders as disabilities, I am also disabled due to Type-I Diabetes, Celiac Disorder, and Asthma.
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kittykitty Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jun-07-10 06:47 PM
Response to Original message
251. Muliple Sclerosis 35 years
Edited on Mon Jun-07-10 06:47 PM by kittykitty
now 71 and wheel chair bound.
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Kucinich Feingold Donating Member (176 posts) Send PM | Profile | Ignore Fri Nov-19-10 02:15 PM
Response to Original message
252. I have learning disability
Nice to see that others on here have a disability. It sucks but we have to deal with them for our life.
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Kucinich Feingold Donating Member (176 posts) Send PM | Profile | Ignore Wed Nov-24-10 05:43 PM
Response to Reply #252
253. I just found out that I have PDD
I'm guessing that I'm a aspie.
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Urban Prairie Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Feb-14-11 10:48 AM
Response to Original message
254. Peripheral Arterial Disease and Ankylosing Spondylitis checking in here
Edited on Mon Feb-14-11 10:50 AM by Urban Prairie
Been permanently disabled since April of '06 was employed by the former Penn Central RR for 15 years(which became Conrail, that was broken up and its assets sold to CSX) and the USPS for 18 years. I am now receiving SSD and my disability pensions from the RRB and the USPS, all of which in total equals about 40% of my annual average base salary while employed by the USPS.

Still lost my home to foreclosure and our vehicles to repossession, before I began to receive disability payments, since it took about a year and a half for my applications for disability to be approved, and my wife unfortunately lost her job to outsourcing, just two weeks after I resigned my position with the Postal Service, upon the advice of my physician.

We just could not overcome the loss of both of our FT incomes at virtually the same time. My wife did NOT receive an extension of unemployment benefits after 6 months, because the US was not "officially" in a recession yet at the time (November of '07) even though it was eventually revealed that the US actually WAS in one by December of that year, as the neocon Shrub administration sucessfully concealed it, due to the upcoming '08 presidential election.

My wife has long been in a great deal of pain, and has been receiving treatment for it by her doctor for many years now. She was diagnosed with having fibromyalgia and spinal stenosis. Her physician advised her to apply for SSD, which she did in October of last year. We received a letter from SS last friday, rejecting her claim, and I have yet to show her the letter, and tell her the bad news. She also suffers from depression, and obviously this is not going to improve her mood. We will likely appeal the decision, since her physician said that he would support her claim for disability. My wife really very desperately needs to see a specialist, such as a neurologist, so that she can be examined and have an MRI scan, but she has no health insurance, and we cannot afford the costs anyway, since we live solely upon my disability income, and never have much if any money left over at the end of the month after paying our rent and utility bills.

About a year ago, my wife applied for Medicaid through our county's DHS, but she was denied, because my monthly income allegedly is just "slightly" over what they consider the maximum allowable to qualify for coverage. (we have no children) Before my wife's physician advised her to apply for SSD, we seriously discussed becoming legally separated, and if necessary, getting divorced just so she could qualify for Medicaid assistance. Even if we appeal her SSD rejection, and she eventually succeeds in being approved for SSD with the help of an attorney, she may still have to wait at least a year or so before she will be able to qualify for and begin to receive Medicare benefits....sigh...
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tryingtobehopeful Donating Member (5 posts) Send PM | Profile | Ignore Sun May-01-11 05:16 PM
Response to Original message
255. I am disabled from long list of physical and mental problems
i can barely get out of bed in the morning on most days, and i have gotten worse over the last three years. oh wait, i'm not disabled because the social security administration SAYS i'm not. oh well, never mind.
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Akoto Donating Member (1000+ posts) Send PM | Profile | Ignore Fri May-06-11 11:34 AM
Response to Original message
256. Male Chronic Pelvic Pain Syndrome
Indeed, it's a rarity. :)

I was officially granted SSI last October or November after going before a judge, and following two years+ of applications and appeals. Ruled in my favor on account of abundant clinical evidence gathered at the University of Miami, which the previous reviewers apparently could not see. Unfortunately, I'm only 26 and hadn't worked much, so I didn't have enough work credits for full SSDI.

Basically, if it's above the knees and below the belly button, it hurts. I can no longer sit or stand save for very short periods (~10min). It has been tough to deal with the constant pain, though my pain doc tries to do what he can.
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RosesAreRed Donating Member (25 posts) Send PM | Profile | Ignore Tue Jun-07-11 10:32 PM
Response to Original message
257. Spinal Cord Injury
Resulting from a car accident (entirely my fault - hubris about my car, and driving abilities on a mountain road) in 2003, have a spinal cord injury at T-7 - fairly incomplete. Disabled enough to qualify for the nice parking placard, and I can still manage a stick shift (thank god for that), but endurance on my feet isn't that good and requires assistive devices to maintain that 15-30 minutes of endurance - more often than not I'll revert to a wheelchair for going out. Meh. Lots of residual pain, but nothing that a doctor who isn't afraid of prescribing opiates can't handle.
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KamaAina Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jul-21-11 01:50 PM
Response to Reply #257
259. You're in our service area!
I work at the independent living center that serves Santa Clara County. Check us out:

http://www.svilc.org

and be sure to come to our 2nd Annual West Coast Disability Pride Parade and Festival this Saturday!
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Fire Walk With Me Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jul-18-11 04:52 PM
Response to Original message
258. Bipolar "nos" (non-specific), friend of Bill W...
Oddly, the medication(s) I'm on destroy my energy level, sleep cycles, short-term and long-term memory, and my higher mentation. I can't really function without the meds, but at least I could earn a decent living, far more than this disability payment. Currenly living in a "sober" living with 11 other men, sharing one bathroom.

Republicans who wish to cut any amount of funding for the ill should be forced to live the rest of their lives in our position.
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socialshockwave Donating Member (637 posts) Send PM | Profile | Ignore Sat Jul-23-11 01:29 PM
Response to Original message
260. My mother
Edited on Sat Jul-23-11 01:37 PM by socialshockwave
had a really bad stroke last year that almost killed her.

I have severe anxiety problems but I'm not on disability - she is, and I try to help her when she needs anything done. :3

I posted this 'cause I live with her as I'm only 19.



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Courtesy Flush Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-29-11 01:32 PM
Response to Original message
261. I'm not disabled, but I am an amputee.
If not for modern medicine, I would definitely be disabled. Thank science!
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mugwort23 Donating Member (2 posts) Send PM | Profile | Ignore Wed Aug-31-11 09:05 PM
Response to Original message
262. Reply
Sorry concerning your work loss.
I am diagnosed Bipolar, Asperger, ADHD.
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RamboLiberal Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-11 05:11 PM
Response to Original message
263. Just got dx I have ALS
From Pittsburgh area. Lost a lot of hand function and legs are going.
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deafskeptic Donating Member (25 posts) Send PM | Profile | Ignore Sun Oct-23-11 03:18 PM
Response to Original message
265. Born That Way.
I was born with profound deafness and dx'd with ADD at age 28.
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