Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is everyone still able to work?

hi valerie,

great to know that you have a good boss as well! take care.. Renee

Hi Renee,

I'm working, but it's only a part-time job and even that is killing me.

I've been a stay-at-home dad since my wife died back in 98 and Social Security has been keeping me afloat. I take a part-time job each school year just to add a bit of extra income but as my AS has progressed, it has become more and more difficult.

SS will run out when my kids reach 19 and I don't know what I'm going to do; I'll be 47 by then and not nearly old enough to start receiving my own SS unless I get a lot worse and qualify for disability; I won't be able to receive my wife's SS until age 60 so I've got to fill 13 years!

I can't do physical work because of the toll it takes on my body and I can't take a sit-down job becuase of what sitting for long periods of time does to my body, and I can't stand for very long because of what it does to my body! What in the world am I going to do?

Sadly, I almost have to hope that I get even worse, totally fuse, am bent over like a ? just so I can get disability, otherwise, boy, what a life I have to look forward to.

Sorry to sound so glum, but wow, AS sure is a stinker!

Hi Steve,

I'm so sorry about what's happened to you. I was thinking that before I reached the 2nd half of your story that you should sue!!! I'm glad you are, as that is definitely discrimination. Good luck with that and also, good luck with getting your comp. extended. I know you must feel worse mentally because you're not working, but just remember that it's not your fault and you will work again soon where you won't be in constant pain and where your boss will give you the respect you deserve! Renee

Hi Renee,

I worked for 15 years doing day care in my home, I quit in 2001 because it was getting to hard with having 7 to 8 children at my house all day. My oldest Tiff was getting married and I wanted to devote all of my time to her wedding.

In April of 2002 I got to realize my dream of opening my own childrens consignment shop, that lasted until the end of 2003 when I couldnt do it anymore and had to close it down.

I haven't worked since..since then I have been fighting with disability.

I would try to hold onto your job for as long as you can,

Lisa

Hi Renee,
You will find each person to be different with this subject as AS effects each individual differently. I have had AS for over 30 years and for the most part I have continued to work fulltime even 2 fulltime jobs up until this past year when 3 knee surgeries this year slowed me down. I now work only 4 hrs. a day and I am thankful to be doing that. I find pushing myself to get out and help others, in turn, helps me get through the rough days. I do consider myself lucky and the exception in alot of cases with AS'ers my age as the years of neglect and misdiagnosis has left many of us incapacitated. I hope this helps answer some of your questions. Just remember to take one day at a time and be glad and take advantage of the good days.
take care
Cindy

Renee, That's a great situation for you. By that I mean that your chiro now understands what's going on, and he has the knowledge to help you with supplements etc. I don't blame you for not letting him manipulate you, I've always been told that's not a good thing for us to do. I'm sure the research that he's willing to do for you will be of a great help. Good for you, hang in there, and be nice to him.

it is pain meds it is "diclofenacum"= chem. name

guess this will help

sanela

Hi Renee, like you I've been very fortunate in my workplace. My boss(es) have been incredibly supportive (right down to covering the cost of my first infusion of Remicade until I could get independent financing arranged). Their first concern has always been my well being and, as a result, my loyalty and desire to perform 150% has never waivered.

Because I type for a living, they took the recommendations of the occupational therapist that the Arthritis Society sent over quite seriously. I have a special chair, a little shelf for compiling reports (so I can stand up when doing so) and they helped me rearrange my work area so that I'm constantly moving and stretching in different directions. Quite often when I would otherwise have wanted to stay home, I've come in to work anyway because I might as well be doing something instead of staying home and focussing on the pain. They, in turn, try to make things easier for me on bad days. They also know that if I take a day off work, I must truly be ill since I'm quite stubborn (some would say stupid) about taking time off.

Good question, by the way.

Hugs,

Hi Pete and So Many Others responding to this question,
I am really glad you brought up this issue, Pete. Someone here did say that everyone is different in the AS symptoms, etc. I think it may depend on how far the disease is progressing.
For myself, I got a diagnosis in 2002. Xrays had shown that my spine was fused on the top and bottom vertebrae... still working in the middle ones except for 8 degenrated discs. Also, stenosis in the lower spine had so narrowed my spinal cord that it was perventing me from standing or walking very much. It never dawned on me to quit working since I am my sole support and I was 58 and loved my arduous, full-time high school teaching job.
In 2004 the AS was diagnosed. I'd had many corti-steroid injections in the spine just to keep going and I lost my job because staff was being reduced.
The emotional impact really flared me into true crippledness and depression. I was a wreck!
The day after I stopped teaching I went to the Social Security office and applied for full disability.
The next week a very kind and understanding woman called and took my application. Within a month I received my approval after my doctor sent in the records. I actually had to fight with my usually kindly doctor because he was so negative about the possibility of my getting on disability.
His experience was that it is nearly impossible. I simply could not tolerate that kind of talk because I was feeling so decimated. I think I may have been kind of hysterical. So, he did all he could and I think in the long run it was just God's will for me. Hindsight.
I have been receiving SS Disability since October 2004. They make you wait 5 months after you are approved. And you have to wait 2 years and 5 months to receive Medicare insurance. Right now I am on the end of a 7 month wait with no insurance hoping nothing too horrible happens that I cannot afford to pay for. (Unfortunately, I just receive a preliminary opinion that I have a tumor in my right kidney plus the multiple stones that seem to accompany advanced AS. I think the best thing to do is NOT to get stressed about anything. It just makes the pain and flare ups worse.)
So, that's my experience with Social Security disability.
I really want to encourage you to call your SS Office and get an appointment to apply for disability. From the little you have written here it sounds as if you would be eligible. They have a flexible period while receiving the money for you to try to work a bit for 9 months or so, if you can or want to, they offer vocational training,etc. But the woman who advised me told me no one ever really gets back to long term work by the time they get to SS Disability. There was no pressure on me to work. I pressure myself on those rare days when I feel sort of normal. Sometimes I feel so good that I think I must have been imagining the whole thing. The next day, or a few hours later, I am back in the AS grip.
When I read all these peoples' comments about being able to work even part time I realize I had been working while not knowing or admitting how disabled I was becoming. I think, Pete, that you know you are there. I hope you have a doctor willing to help you with the paperwork?
I wish you all the best on this AS journey.
PD Budd

Hi kat,

I'm glad you too have such wonderful employers. These people should get medal's for their compassion (sad but true!)!! I hope to work normally again soon, as long as these med's actually help me.. *crossing my fingers* Take care of yourself!! Renee