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Myositis Support Group

Inflammitory Myositis, underlying Raynauds system

#1

I guess this diagnosis has been in the makings for over a year now...

Rheumo taking immediate action now since the muscle biopsy on the 21st of Dec. I hope its the

right course of action? I have high CK & adolase levels & lots of tenderness & pain in legs..but I'm

not ready to give up! Start a new job tomorrow having been laid off from the oilfield industry of 20 yrs. back the first week of Dec. I hope I made the right choice by going back to work, but I worry about having to take time off for blood work & Dr. visits as my pervious employer was knowledgeable of my medical history?

Stressing & know I should not - brings out the Raynauds!

Welcoming all input at this point as I am trying to learn along with my family.

Again, thanks for the add. Shine

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#2

Hi Shine!

It’s very brave to start a new job while dealing with this disease. I was diagnosed in 2012 with Myositis then a year later with Raynauds, so I get it.

I feel like most employers now a days almost have to accommodate anyone with a disability? My thing now is the muscle weakness and fatigue…there are no jobs good for me.

Whatever you do, try to stay as relaxed as possible!

Keep us updated :slight_smile:

Nichole

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#3

Thanks for the kind words Nichole...update - the job did not work out, seems the requirements were a little beyond my expertise, but the job posting lacked a few very important functions, so I don't feel too bad..

I mentioned nothing of my current health issues, as I am still recovering from the muscle biopsy.

I have thrown around the idea of disability with my husband (he is all for it) but it all seems so complicated! Is this disease classified as a "disability", I'm so lost..

This just can't be IT, not when I feel I am still capable of pushing through all this...am I lying to myself?

All suggestions welcomed...I'm so confused

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#4

Hi Shine,

I'm sorry that you're going through all of this - what a bummer! However, for me those initial obstacles ended up being a blessing in disguise.

I have been on employer long-term disability for about 4 years. I started not working at all on short-term, but then appealed to negotiate working part-time from home while still receiving my long-term benefits. Social Security disability is much different though, and you may need a disability attorney to assist with all that.

Stay strong though! You can do it, and you WILL find a way to make this weirdo disease fit into your life - not the other way around. Keep your chin up and reach out to the group if and when you need support - you've got this!
XO, M

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#5

Kind words Maren, my previous employer did not offer short/long term disability, even tho it was at my suggestion that our HR check into it, hence in my thinking when I divulged my health issues I was laid off with 4 wks compensation pay & 6 mths full medical benefits. I was heartbroken after 19 + yrs. of service & having made a promise of 20 yrs of service.

It just took so long for even a remote diagnosis.

After reading my posts I sound so desperate, again not me! Thanks.

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#6

I don't think you sound desperate! You just sound like someone who needs answers, and they will come - if not, hunt them down! :-D

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#7

Not desperate at all. This isn’t your everyday disease. I tried 3 times for SS disability (the kind I’ve worked towards for about 21 years). Was denied twice (once I had my lawyer) the third time I went in front of a judge via video in a room. The whole experience was very upsetting but I have to say worth it once the judge awarded me the Disabilty plus backpay from day of diagnosis.

I do regret not getting a lawyer right away and that my lawyer seemed barely competent with disability when she said it was something she dealt with often. She was horrible in front of the judge. The judge was very tough and my lawyer didn’t help with info she had sitting right in front of her, just sat there like a deer in headlights. So my advice is get a lawyer right away (who charges nothing up front, just takes from what you win) and make sure they are very experienced with this.

Good luck!

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#8

Good advice Nicole! How long did the whole situation take? Living in west Houston area, I'm sure there is an endless supply of SS attorneys...I am only considering this "option" should I progress in this disease...I guess?

Like you, I have worked steady since the age of 17, now 55 and according to my SS statement, filing for disability is NOT much of a monthly check...its just ashamed to say the least.

The diagnosis of Myositis/Raynauds is just icing on the cake for me...I have had both hands done for carpal, I have a cervical fusion at C4 C5 & C6, thoratic/lumbar herniation, diagnosed with panic/anxiety disorder in 2014. I tell you hitting my 50's just seemed like a hurricane of problems...lol

Any pointers you can send my way would be most helpful in this possible future quest.

Have a good one, I'm trying.

Shine

Hanging out on a limb it seems!

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#9

Wow, you’ve been hit hard! I had carpal tunnel and it flared when I wasn’t on prednisone. I had it in both hands, had surgery on one and magically both hands got better. I hope you get relief with that and the rest of your diagnosis :frowning:

It took me about a year maybe year and a half from the day I first filed. That includes the two denials. Just be persistent and keep ALL of your medical records from every doctor. It wouldn’t hurt to give your docs the heads up when you plan on doing it. My Rheumy acted like he didn’t want anything to do with disability bit when it came down to it, he and my psychiatrist were my biggest supporters according to the judges letter of approval. My lawyer basically had to prove that there were no jobs that I could do, and according to the paperwork there weren’t. I couldn’t work more than a certain % of time needed before resting.

If I think of anything else I’ll let you know!

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#10

Hello shine, nice to finally know what it is that’s making you sick, isn’t it? These diseases can be so elusive, and can take literally years to figure out. I agree with what Nichole has said in her post to you. New jobs in and out of f themselves can be stressful and challenging, whatever you do try to pace yourself and don’t overdo, as I can guarantee one way or the other your body will pay if you do. Try to rest when you can be sure to eat right and don’t get run down. Disability is an option, but put it off as long as you can, it’s terribly hard to make financially. I’m struggling with that aspect as I type. I am forced to live with my x husband as I cannot live on my own, no way to support myself. I really hate this part, as I’d give almost anything to be on my own. He does nothing to help other than put a roof over my head. At times I feel like I’d be better off living in my car, as he keeps so match drama happening all the time. We were divorced right in the middle of me finally finding out what I had. He still tells everyone were married,but I pay him 450.00 per month to live in his home, so please think long and hard before applying for disability. I wish I had put it off, but couldn’t per my dr. I’m still trying to find other alternatives for living and I will continue until I die I guess. Should you decide to go that route tho, by all means get an advocate group or lawyer who specializes in ssd to file for you, it will go much faster without snags. Should you need one I can give you the name of the group I used, they were fantastic. But again try to remain as stress free as possible, stress only complicates everything. Hope this helps, take care. Wendy

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#11

Hi Wendy, my heart goes out to you for sure. The job market right now is slim for everyone despite what our government says. I'm not ready to quit though, nor give up with disability being a last resort God willing...

Funny I remember the other day asking one of my granddaughters (my favorite, even tho you shouldn't have one),

would she take care of me (she's 8) and her response was, "why cant Maya do it, she's older & smarter"? Maya is the oldest gdaughter (16 yrs) out of six...I just laughed. Told my husband the story, his response was what about me? My heart goes out to him too for everything he is going through with me!

There is a group that I was apart of many years ago for single moms, divorcee's etc. that I believe is nationwide, I cannot remember the name right off, but its a situation where "mostly" females share a home & the expenses in all ranges. You can become a member and do a search on avail. situations and contact the person with avail. housing direct through the group. I will look this group up and post for you - anything is worth a try.

I appreciate the kind words & wish you all the best in your journey.

Shine

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#12

Shine
I’m so impressed by your determination, just keep fighting. I’ll be praying for you, for strength. My 11 yr old granddaughter is fantastic too, I asked her the same question, she patted my shoulder and said grandma I’ll take care of you as long as you snuggle with me…between my 2 grand babies and my 3 kids,and my 3 fur babies I keep going. Life could be a lot worse, but by the grace of god it isn’t. Take care gentle hugs coming your way

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#13

evening Wendy, I did locate the organization on housing, don't know if it will help you out in any form or fashion or if you are actively looking for another option..

its called Co-Abode, and I do believe it is nationwide housing where mostly females, moms with children etc. share the expenses of decent housing. Always an option.

take special care, I'm on here a lot it seems lately looking for answers & opinions

Shine

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#14

Shine. Keep coming back, sometimes when you ask questions etc it might take a day or so, but we try to keep up on this. Thanks for the info too, I appreciate the help. Gentle hugs my dear

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