Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group In need of advice- badly

Thanks a lot for all the good advice guys.. Here's the replies to the questions--

I actually already started up the process to get disability. Lawyers told me I would most likely be denied on the first application and on the appeal. They win most of their cases in court, presenting the evidence in front of the judge. I live in Chicago, so there are a lot of people who are waiting to get in front of a judge. I was in so much pain before the diagnosis that I applied for disability once before. I was rejected and I didn't appeal because I didn't have medical evidence available at the time to prove my pain levels.

So right now, I applied for disability. They are gathering my medical information from my doctors and I expect to have my first rejection back shortly lol. What a crazy system indeed.

As for the No Starch Diet... I am restarting on this. I used it back in college.. At the time I didn't think it was doing much for me because I was still in significant pain, but looking back, I think it helped me to avoid flare ups. I notice when I eat pizza or anything starchy, it makes the pain worse. I got a bunch of recipes that will make it more interesting. I was eating variations of salads WAY too much.

In fact, I have some good ideas for you guys on the recipes front ..

Jambalaya is really good tasting-- I haven't had this recipe yet, but it works surprisingly well for the NSD. Some of them use rice or other starchy things, but its easy to alter the recipes to make them work for us.

http://allrecipes.com/recipe/colleens-slow-cooker-jambalaya/detail.aspx

Also, Thai style curry is good. Using that on meat and vegetables would be very tasty. No rice needed. Just have more meat and vegis.

Thank you all for the support. I don't know where I'd be without ya

Hello Prost. I have been reading with much interest what has been written here. I understand and have felt your pain and possibly will feel it again in the future.

You seem to be in a great deal of pain. To find a way out of this in my experience will take more than 1 person and 1 treatment.

I found myself with a great doctor, a great physical therapist, a great masseuse, a complete change in lifestyle (I only do beneficial sports, I don´t lift heavy objects, I don´t sit in slouching sofas etc.) and remicade, a drug that has worked for me.

Unusually documented but depression lowers the immune system and something like AS can have a field day which depresses you more (vicious circle).

If I were you (which I am not) I would try to show patience and good faith and work out what works for you. (NSD did nothing for me, each to their own), I hope you find yours.

When I was in my early 20's working with one fused and one fusing hip was exhausting. My job didn't require physcial lifting or strenuos activity but I had to be mobile in a crowded city and it was daunting.

I would come home for the first years and literally collapse at days end unable to do more.

Over time I adjusted and built up more tolerance to the pain and found ways to function.

I found that being at work gave me something to focus on and in some ways overcome the pain. It gave me a portion of my life where I had "normal" contact with folks so that I could be more involved in my world. It helped me battle my AS and I never thought I would be able to tough it out so many times.

If you can push yourself and find the right work its worth the effort, although most of the world will not ever realize how hard each day is. Keep tryin', because in my case 30 years later gettin' that first job was worth it and my first job paid so little it was comical but got me going. Best wishes

Hello Brian,

Welcome to KA--glad you found us, but sorry you needed to.

Just a quick answer for now. You can definitely ask your doctor about the Medrol pack, but with the other meds you are on, it may not be a solution for you. A short, intense burst of prednisone like that can often be a great way to break out of a flare, but prednisone has strong potential interactions with other drugs and also has the potential to cause severe side effects, so it is not something that can be automatically prescribed in your situation. It is, however, worth asking your doctor about for sure.

Another, perhaps easier option, is to ask your doc to switch your to a stronger, more appropriate pain medication. These could include some form of oxycodone, methadone, or another long-acting opiod pain med. These drugs are better than vicodin for severe AS pain because there are options that last 12 hours instead of 4-6 hours and because you can get one that does NOT include acetominophen, which vicodin does (long-term acetominophen use its very hard on the kidneys and liver). And, of course, oxy and the others are more powerful and thus have a better chance of controlling your pain. Unfortunately, many, many doctors are afraid to dispense any opioid pain meds, so this part of my advice will only work if your doc is open-minded and willing to prescribe such meds

O will be available to flesh out this response later. Until then, I apologize in advance for any typos in this post, especially if any of them are of the outrageous variety. I write this using the virtual keyboard on my phone, and it is really hard to work freely in the text box .

Brad

A lot of great answers for the insurance part, but as for the employment part... Have you considered looking for something at a community center or gym? Even a volunteer position can lead to full time employment sometimes, and such a job would surely allow you to move around as needed.

Assuming a lot here, but guessing you are still single with no children. A good time to try to break into this field, if you don't have dependents to worry about.