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Disability?
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scanlet posted:
Hi. I am recently diagnosed with fibro. I also have pretty bad interstitial cystitis and raynaud's phenomenon, TMJ, anxiety, fatigue, etc... Things were already tough with the IC (having to pee frequently, being up all night w/it.. etc), but not being able to use stairs or ladders, lift, stand or sit for long periods and other basic duties are out of the question. I'm 29 and the Dr. who diagnosed me seemed disgusted when I said I might not want to work anymore. Is it that ridiculous that I would go for disability? I have good days occasionally, but I also have very bad days, and most days are just in the middle with pain in many places at various degrees, IC flares on a regular basis, and varying degrees if fog/fatigue (which can be the MOST debilitating to me, honestly). Just second-guessing myself now... I know I'm not lazy (I ran my own business for awhile, actually), but I know when I can't push myself now too. Any advice?
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dollbug responded:
Hello and welcome.....MiMi in NC...actually I do not think you would qualify for SS Disability....since you are so young. You have to work and have so many *credits, I think it is called* before you quality for SS Disability....but you can probably apply for SSI. I truly do not think the wrath of the dragon, aka FM, cares how old you are.

So I am not quite sure....did the doctor agree with you about not being able to work or not? Trying to do anything without the doctor supported you might take a lot longer than it would if indeed he is behind the decision. I can tell you that nothing is easy these days....everything is a process to go through.

I hope you will check out the info here under *tips* and *resources* and be sure and read the *member toolbox* as well.

You should also get your doctor to check your Vitamin D and Vitamin B's levels....low Vitamin D can cause additional pain for a lot of people these days....and it can also affect other illnesses as well.

Hang in there....you have found a good FM support group here and I am sure you will find something that will help you cope better soon.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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scanlet replied to dollbug's response:
Thanks! Well this particular doctor (pain management specialist) has only known me for about 15 minutes of my life and made a lot of assumptions that I was scared to argue with, so no, he would not support me at this point. My general doctor does, and I think my urologist would as well, but I still have to try a few medications yet anyway. I'm so frustrated because I know I could not handle working full time at this point (and who would hire me- ha!). I can't even imagine going to school again (was working on 2nd degree) now that all of this new pain & fatigue has started. Last semester was miserable- and I found out I have around 20 food allergies in addition to gluten sensitivity, and when I eat the wrong thing- whoops: pain, fog, exhaustion, depression.

Anywho, I have had my vitamins and such checked a few times over the last few years. D is always a little low because I live in MI (USA) haha, so I take calcium with D and try to get the sunshine in when it's nice out.

I will check everything out! Thanks again!
 
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missist replied to scanlet's response:
Scanlet,
This is one of the reasons I started my own little business. I sell things on Etsy.com. Also added zazzle.com and will likely find new venues in time.

I can work at home at my own pace and not have to drive all over or be on my feet or my butt too long.

I don't make much money, there are a few who do--selling supplies seems to be the best $ category on etsy- something I'd like to get into when my brain is less foggy. (hope that happens)

I don't think I could get disability cuz most of my work years were spent as a stay at home mom, and homeschooling. I worked before kids and for several years after kids, but I just can't do it anymore.

Thankfully my husband can support us.
There are quite a few chronically ill artists and crafters on etsy.

You can find me at
pokeberrypatch.etsy.com

If you are crafting you may find you have a niche you can sell in. just remember to pace yourself-- going gung ho with this is just as bad as with a job.
Mary
 
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Anon_2912 responded:
For me working keeps me sane...

It keeps me moving and my mind active. I think if I stayed home I would go crazy mentally and eventually give into Fibro.

I am not saying it is easy with the fatigue & pain, but I can't let myself give in....

I find that the socializing keeps me focused on other things than my fibro.

I do have other medical problems, but I guess a lot of people do.
 
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Anon_10089 replied to Anon_2912's response:
Hello-

I wonder if your job and your doctors would allow for short-term disability. I know that is not accessible to everyone, but it might give you a chance to catch your breath and figure out your meds.

I also think there are two sides. I work very part-time and I know it helps me not get depressed. But I really don't think I could work full-time. If I did, that's literally all I could do. I imagine I would come home, crash, then get up the next day.

You have a lot to deal with and I hope you figure some of it out soon! I am around your age and it can be difficult seeing your peers living with so much vitality.
 
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missist replied to Anon_10089's response:
when I was working I would come home and sit with my feet up and basically that was it for the day. Drove me crazy but I literally couldn't walk, things were all stiff--hips/legs, feet, etc.
 
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Bette_K responded:
Scanlet,

Sounds like you've got just about all the little add-ons FM can bring. Fun it's not.

Try to hang in there while the pain doctor is tinkering with your meds. You may find that there is a regimen that allows you to function--not at your pre-fibro level--but better than you are doing now.

Stick to your job for as long as you can. You need it for money, companionship, money, the pride of doing a job well, money, and more money. Every day you continue to work is another day of credit towards your benefits when the time comes--whether it is when you reach your 60's or much sooner.

Give this doctor a chance to get to know you and understand that you are not looking for a get-out-of-work-free card. You are a complete stranger to him. He has to be convinced that you are willing to work with him towards getting your conditions in check. He has to understand just how bad your bad days are (If, that is, he CANNOT help you get a lot better). He has to know just how many bad days you are having.

My pain doc was the one who suggested, first, a 6 week medical leave (I was lucky enough to have a PAID leave.) and then that I apply for SSDI. Unfortunately, she moved to be close to her family, and I had to find another doctor and again build up a relationship of trust before I could count on my new doctor's cooperation in this.

If I had not waited those 2 years (yes, 2 whole years!), I would have eventually gotten my SSDI--at a much lower amount. But, I would NOT have gotten my NY STATE Teachers' Retirement System until I reached 65. The NYSTRS monthly check is higher than my SSDI check. Those 2 years were far from easy, but they have made life a lot better for my husband and I now.

Work every day you can. Keep working with your doctor to make those work days more tolerable. Then, if you must go on disability, you will do so knowing you did everything possible to continue working. You will have solid documentaion that you can NOT work, and you will still have a good, reliable pain specialist working with you to help make your non-working days as pain free as possible.

After all, your pain will not magically stop just because you no longer work.

Bette (the lady who drove home on her last working day with her hand covering her left eye to stop the double vision and then crawled into the house)


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