Need some input....

[mams57]

I'd really appreciate some advice on moving forward.
all of you understand the devastating effect that having a disease impacts your entire life but I'm wondering if all of you can give me some advice in the financial aspect.
I started getting sick in 2004 or so ( looking back at symptoms of GPA ). I had left a management position in 2002 because of moving out of state. While searching for a comparable position, I started having health problems. In 2006, my accident took me down with surgery and extensive PT with an eventual 2008 surgery to remove what had been done and replace with an all metal knee and extended tibia post. All the while I'm being told I'm suffering from chronic sinusitis and COPD which had left my lungs with holes completely thru them. I took countless antibiotic and prednisone rounds and would always rebound. Even after times where I would be so sick I would have to use oxygen therapy, I would get better. The fatigue, malaise, joint and muscle pain started in horribly from 2006 on and my complaints were meant with treatment geared to fibromyalgia and such.
vacation in Florida in 2009 became a 7 day stint in telemetry room and I basically started wasting away, not able to breathe until the Drs decided to pump me full of long acting steroids. They couldn't understand how my lungs could be so bad at such a young age. They checked me for an inherited disease marker and found I did not have it. Needless to say, my breathing improved but my sinus problems, severe fatigue and pain never did.... The dental cost of multiple root canals, crowns etc even with insurance is astounding. I had always had strong teeth, they started crumbling in 2007-08.
Financially not helping since 2006 left my husband and I in hardship. We lost our home and haven't recovered.
I know it seems I'm giving way too much info but the dates and what I was experiencing are important. Although not amazing, I can say after 5 or 6 doses of MTX, I feel better than I have since 2004 as to sinus, fatigue, etc....
How have others coped with the financial aspect of years of medical copays, deductibles, unemployment and since the immunosuppressive therapy is helping is that enough to show autoimmune problems for Social Security?
just not sure what to do....
Thanks for any input!

[cutehair2013]

Hi mams57

I not sure I will be of much assistance as I do not live in the US, but I do work for a Disability Management company and deal with approving disability claims daily. I also sit on the application appeals board and see a lot of applications! The biggest advice I can give anyone is most of the time if an application is declined at the initial review it is because of missing documents or the evaluator not understanding the health condition in question.
Fill out the Social Assistance application, when they send it back it will have "reason" for approval as well as if they "decline" it. If it is declined re-apply on appeal and write a letter to speak to the reason for decline on initial application.
The appeal board has far more experienced people reviewing the application. It seems like a lot of extra work and the application is overwhelming to complete in general, maybe there is an advocacy group close to you that can assist with disability applications? WG is certainly a disabling condition as we all know but it is also very misunderstood in our medical communities.

wish you the best in obtaining the SS approval

[Debbie C]

Have you been officially dxed with wg ? If not you need to find a specialist in this area and get you on the right meds. Once you are dxed you should have no problem getting SSD and maybe SSI (additional income) They go a lot with your age also,you have a better chance if you are around 56 or so. And also like mentioned above ,gather any tests,reports, dr notes, anything that will show proof of your illness....Good luck

[annekat]

I was 58 when I got easily approved for SSD. Filling out the app online was a lot of work, but then I just had a couple of phone interviews with the local office staff, and didn't have to lift a finger after that. It may not always be that easy, especially if you are younger, and depending on the severity of your disease involvement. It helps to have quit working or have very minimal income about six months before you apply. I was approved for a retroactive date that went beyond that 6 months but was limited by certain parameters. I got what, to me, was a pretty hefty lump sum for that retroactive consideration. I can still work at my pottery business as long as I don't make over a certain amount per month, and that doesn't seem to be a problem, due to my lowered energy level and record of past low income. I'll be 64 this year, am still taking the meds, the disease has sort of leveled off, but I don't feel out of the woods, and I think I'm too close to regular SS retirement age to be concerned about a review of my case or discontinuation of benefits. People I know who are older than I had their SSD benefits re-classified to regular SS at a certain age, with the benefits in the same amount. They continue to get the same Medicare they got on SSD. Good luck in working through this and figuring it out.

[mams57]

I really appreciate all of the responses. I will definitely check into the SS but I know the process can be difficult.
The only thing I know for sure is in the last 5 weeks I've woke up with moderate sinus pain perhaps 3 or 4 mornings, the rest of the time it hasn't been there or so mild that I could dismiss it. The fatigue is better and the pain in my joints and muscles is much milder than normal. Before starting the MTX I would be awakened thru the night with pain, having to shift position and the sinus pain and inflammation was debilitating, I couldn't think or function. If I wasn't taking a taper of prednisone, I would be in this condition at least 5 days out of the week. Add in crumbling teeth,hearing loss and constant pressure in one ear, COPD flare ups, stenosis osteoarthritis of the spine and 3 deteriorated discs w nerve pain.
I'm not on any steroids right now, just taking the MTX.
Im not a Dr but I would have to say my problem is definitely autoimmune considering that the MTX alone is helping. BTW I will be 59 so I'm hoping getting SS help of some type won't be too difficult.

[annekat]

Mams57, I thought you were younger... at your age and with the problems you have, I'd be encouraged that you could get SSD. It's good to know the MTX is working well for you, and I think on an earlier thread you said you are at 15mg./wk, a relatively low dose.... or am I remembering wrong? And if you are off steroids, that is great, for many of us it is much more difficult and takes years. The problem could be that SS would see these as signs of great improvement, but considering the pain you were in without the meds, plus the ear, lung, and spine problems, I'd think your chances would be improved. The main thing is that your issues really do prevent you from working to any significant extent, and that they make you unemployable to a significant degree. Best of luck.

[Debbie C]

That is the reason you actually need to be dxed. WG is a disease that you are able to get SSD. You need to find a good dr and have blood and urine tests done or even get a biopsy of your lungs. Maybe in the meantime you can get on Medicaid