Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Mixed feelings

Hi all,

I don't post here often, but I lurk some.
Anyway I went to the rhuemy yesterday. When he asked me if I had any questions I asked about a handicap sticker for my car. I asked, "When do you know when you need one?"

He said, "If your asking, you need one." Then he said he had no problem giving me a prescription for one. I told him I was having some lower back pain even with the Enbrel and he prescibed vicodin. We went through the rest of the appointment, they drew blood and then I was on my way.

I was filling out the application today for the handicap sticker and I looked at the prescription. It says, "qualifies for permenent handicap". This feels like such a blow. I was diagnosed about a year ago, by then my neck was already fused solid. There is fusion in my left hip and my right shoulder. I'm pretty hunched over but I started the Enbrel and I've been feeling a lot better. I started exercising regularly, I've been eating right and I really feel I've been getting stronger every day. I don't know I guess a part of my was holding out a secret hope that I'd lick this one day. This sticker is like a great big slap in the face with reality. I am never going to get better, this is permenent.

I asked about the handicap sticker because walking can be difficult for me. Trying to see where I am going while being so hunched over puts me off balance. So having the sticker will make it easier for me. I am grateful for the help. But I expected him to put up a little fight. You know say something like, "oh no, you have a lot of years before your handicapped".

The no fuss way he prescribed vicodin seems like the same double edged sword. I'm grateful not to have the pain. But for him to just hand me a prescription for a narcodic pain releiver feels like he is saying, "there is nothing more we can do for you except to make you comfortable".

I don't suppose "normies" would understand. You tell the doctor you have trouble walking and he gives you a handicap sticker. You tell the doctor you are in pain and he gives you a pain pill. What are you complaining about? But I figured ya'll would understand. There's something a little painful about leaving the bubble of denial and running headlong into the reality of having a permenent disabling condition.

Shelly,

When I had to get my handicap sticker I thought I was way to young for this to happen and then I saw that it did help me a lot more when out shopping and just going out. As for the pain meds I was told by my Doc's that there is NOT much more that they can do for me but to help me out with my pain levels with meds. I am so glad that I get the pain meds I get because I could not live with the pain I have without them everyday. Don't ever feel bad because you have to take pain meds or because you need a handicap sticker when you go out. That is what they are for.

John

Shelley
I do understand and you have written your posting in a very meaningful way to me. I to believe that I can beat this thing they call AS. With a little help from Enbrel and working out on a daily basis, I feel so much better then I did a couple of years ago. Just because a doc is willing to give you a sticker and some pain pills does not really mean you are disabled. I never consider myself disabled, maybe "sore" more then others, but I am able to do most things I want. Hang in there, take advantage of what is available to you, but never those things affect how you view yourself.

Shelly,

It could also be that you have a generous doctor. You are right, a lot of people have to fight for them but that doesn't mean because you didn't have to then you are really bad. I had a doctor like that once. Some doctors make their own rules for the benefit of their patients. After you have it a while, I'm sure you will wonder what you did without it. When it comes to whose car to take, that sticker might make you pretty popular, especially in bad weather. I'm not sure if that's good or not but I'm just saying... LOL

Just because you have that sticker doesn't mean you are destined to be severely handicapped. Keep a positive attitude and that will be half the battle.

I, for one, am happy for you.

Sharon

Hi Shelley,

You must have suffered a long time before you got the diagnosis though, so I am betting that you are no stranger to pain.

I have had my sticker for several years, and it was well before I had a definite diagnosis of AS. My neck is a real problem area and I fuss a lot because it can be darned difficult to park the car when other people have been very inconsiderate. There are those mornings when I can barely walk, and yes I find walking up a hill to be """"""" (Aussie for where the b hell are you)hard.

I guess that it is a problem to get a dose of reality when suddenly you realise that this is a condition that is permanent. Once you are fused, yes it is permanent and the fusing cannot be reversed. That does not mean that you have to suffer a poor quality of life.

I am unfamiliar with Vicodin. I have been prescribed Digesic which is a narcotic pain reliever. I use it only when the pain in my head and jaw become totally unbearable. I guess I have not even thought in terms of this being a double edged sword. I see it as being given what is necessary to relieve some very relentless pain when it is in full swing.

I guess that I had been suffering for such a long time without a proper diagnosis that I have not even had time to think about seeing it in the same way. When I got my diagnosis in February it was more like an anti-climax. It was a case of "at last someone has put a name to this and it is not FMS".

You see when I first had the awakening of the pain, which was the first sign that something was happening under the surface, I went into muscle spasm in the shoulders. The pain spread rapidly throughout my body. The rheumy who did the tests 18 years ago came up with the very lame excuse that it was fibromyalgia. I was given a prescription for an anti-depressant that washed me out. I was told to go to a gym and exercise and that I would get over it. There was no understanding at all, only a brochure about the pressure points of FMS. However, the pattern of my pain even then did not match the pressure points of FMS. That was 18 years ago.

It is a sad reality when we learn that the disability is permanent. However, it is how you see permanent that is the key to how you feel about yourself.

Cheer up and keep up the exercises.

Maggie

Hi Shelly
I know the reallities of AS are hard to deal with. I have had AS for over 30 years and it never really hit me until last year when both of my docs told me there was nothing anyone could do, no cure, ouch, all they can do is keep me functional and as comfortable as possible. Sound familiar? It took a couple months to get over the finality of it and come to except the truth. Now I am just greatful for the docs I have, with their blunt truthfullness, and, yes, pain pills. Denial, anger, then acceptance. Hang in there, you're part way there.
Cindy

Shelly, don't get down and out over the situation your in. Your condition may not improve but the Enbrel you take will slow the progression of A/S dramatically. You are and always will be the same person you have always been with more obstacles to overcome. A handicap sticker is for your benefit and should not be a cause for further suffering. I hope you realize that regardless of anything you are you and you are special.

Best of Luck, Scotty...