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Update on my health
My boss is helping me out financially so that is good he is stepping up to the plate. IN addition to my severe eczema which is healing and looking so much better now, (meds are working) the doctors think my Scleroderma is active internally and responsible for the extreme fatigue I have been experiencing. I am waiting for test results, watching YouTube videos which scare the crap out of me with the overall prognosis including one where the disability attorney says that SSI rarely if ever fights benefits for this disease because it is so serious. That alone is scary if they think its that bad and I may have to apply. So basically until I get more information I am in no mans land and waitng.

misstuffy 7 Mar 3
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8 comments

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I hope everything works out for you as I share some of your pain. Let's both hope for the better.

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Myscleraderma diagnosis gotchanged tograft vs host disease-internal is life threatening so pay attention to your doctors.

I will, I am glad to find someone else with this. You can tell me what I am in for. Mine was supposed to be morpheus and for 50 years hasnt been an issue. I didnt know it could change.
I am sorry to hear yours is so bad. I am hoping mine won't be so but I really don't know what to expect. I do know I am suffering from extreme fatigue unlike any I have ever endured. How can I handle that?

Contact me on messenger if youwant more info.

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Apply for SS Disability IMMEDIATELY because when you finally do get approved they give you back pay from the date of first application........!

I am already working to get set up with the lady over in Seynour who knows the ins and outs of applying. She helps other people and is a nurse practioner by trade. I want to make sure of the status of this before I do apply,

@misstuffy The application is critical. Remember this, it is used by the administration to disqualify you - THAT is it's primary purpose, keep that in mind when filling it out. Best to get a professional (lawyer or advocate) to assist in filling it out.

@RobCampbell I have an advocate

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Can't hurt to educate yourself on everything concerning your condition. You never know where it will come in handy! Best of luck and keep the faith...

I am reading up and making sure the youtube videos are by actual Scleroderma doctors. THere is a lot of mis information out there too.

@misstuffy You might want to check on the NIH or other reputable group. They often have videos on their sites and you won't get scared by someone posting false into..

Sorry you're going through this - but glad you're getting to a diagnosis.

@RavenCT When I mentioned it to the doctors and showed them my knee I had no idea it was relevant to my current condition. We will soon know.

@misstuffy Youtube would be my very LAST choice in getting reliable information for medical conditions. Don't believe anything you hear on socal media (well except for this community of course). There is good advice here on where to find real doctors online, use it!

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Well, don’t know if this helps, but there are people on disability that are dying of stage four cancer, and get denied. So maybe the report of ssi pushing through those with scleroderma isn’t that accurate. (It took three years to have my ssdi to be approved for my various issues.)

I received a diagnosis of Primary Biliarry Crhossis about five years ago. Everything I learned about it was terrifying. It’s a non alcoholic type of crhossis, and a lot of people die from this autoimmune disorder. Well, it’s not quite a death sentence, as so many online sources were portraying it to be. Ive learned a lot more about it, and how people survive it, by joining a support group on FB. Talking to others that actually have it, is your best resource for information.

I did a bit of googling myself on scleroderma, and it has an average of 75% survival rate after 10 years. Those are pretty good odds, especially given this usually presents in older people (Not saying you are old. 😉. Just that it seems the average age for onset is middle age.)

Good luck.

Funny thing is, I was only 7 years old when first diagnosed. That is unusual. It threatened to overtake a knee joint and in fact did atrophy everything beneath the skin on that knee. But until recently I was under the impression it was strictly the localized "Morpheus" and was dormant. Now I am learning this is not necessarily true. I will be 57 in May. Right now, just have to be patient and wait for the test results and take it from there. I would prefer to keep working. My friends in and near DM have offered me homes with them. One is my high school buddy and the other his mother whom I am very close too. UNtil I know more I am just going to wait for the doctors to tell me more.

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Good luck! Hang in there!

I will, thank you

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Wishing the best for you. 😟

Thank you, very much appreciate that.

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Keep fighting! Not going through anything quite as serious, DVT and failing joints, but tomorrow I find out if I get to keep my job. Good luck.

Good luck to you. I can't keep my job as the chemicals triggered this. I am waiting for test results to see what is what with my own health. I was diagnosed in 1968 but it has always seemed dormant and never gave me any issues that I was aware of.. Now I am learning a plethora of issues can be attibuted to this if it is indeed active within my body ad I had no idea.

@misstuffy The chemicals at your job caused this?

@kmdskit3 a type of paint thinner triggered the Ezema for sure and maybe the Scleraderma. I don't know for sure, Waiting for the doctors to get test reaults.

@misstuffy Hope all this doesn't fuck things up too much with your finances.

@kmdskit3 The eczema yes, but I was diagnosed with the Scleroderma as a child and the chemicals may have triggered it to become active.

@kmdskit3 It is already messing with me financially.

@misstuffy SSI Disability? It takes quite awhile but have you checked it out?

@misstuffy Paint thinner is highly unlikely the cause of your condition. I'm no doctor, but was a painter for over 20 yrs and have been immersed in the stuff. I'm pretty sure you are referring to Methyl Ethyl Keytone, the primary ingredient in laquer thinner, its bad stuff and attacks the organs, brain but have never heard or seen of a painter afflicted with skin conditions as a result of handling it or Acetone. The thinners may have only activated your overactive immune system, but it could be as simple as the hay you feed your farm, animals, and is far more likely the irratant responsible.

@kmdskit3 Looking into it

@RobCampbell it's a trigger which is a bit different and yes it triggered my eczema, we have established that much by the doctors

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