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  1. I would find a social worker in your area to help navigate the many challenges you are facing. It can be overwhelming, confusing and hard to focus on your health. I would also apply for Social Security Disability and Medicare and/or Medicaid. All of this a social worker can assist you with, along with any other assistance in your area that is available. Inform your doctor that you will be applying for those. I am rarely here, but reach out to others in regards to Sclero; they can give you a boost when you're scared. We all are at one point in time.
  2. Well, I've been down for a year and a half now. Its a hard thing to do learning to slow down. I fought it like a wild dog on a chain but got better as time passed. Finally I just learned to let go of what once was. I try to not do too much of one thing at home, read a little, watch tv a little. I keep a three plants that does not require much work to water but just enough to check on them. I also just returned to an old hobby I had as a teen, aquariums :D I had done all the design and had a friend help with setting it up. I use a siphon hose for water changes so no heavy lifting :) The aquarium works in two ways. When I'm down and in pain I just watch it for hours. When I'm feeling good I can tinker with it. Plus feeding my fishies each day gives me sump'n to do and not hard either. I have four Florida Flag fish and two Blue Spotted sun fish and a electric blue crayfish! Its really is a stress reliever and a place to get my mind off of things. I designed it where it literally looks "alive" with a river current that gently moves the plants and gives the lighting a vivid effect. Try to find things that work for you. Ask your self what will relax you and provide a way to pass time yet not be demanding.
  3. What she said! A doctor who specializes in sclero is the ticket! I found that out the hard way after 3 regular rheumatologist's! One being a very good one at a prestigious clinic had somewhat of a clue but still dropped the ball.
  4. Hi Lisa! Ya you Englander's are about to get a NFL team, huge Saints fan here and on a Saints site I made a post about what the mascott would be and someone posted "the fog" too cute!
  5. @inkedup Do I ever understand about hard it is to tell whats causing what! I have been through all the GERD stuff and nothing remarkable, although I did have a colonoscopy few years ago. I had 3 pre-cancer polyps. We will do a coeliac panel next visit, but I did try gluten free diet on my own. No positive results but there's that "hard to tell" thing again and is why I still wanted it done. From what I can tell looking back, I have had it a long long time and am hopeful it will help. I live in the "sunshine state" of Florida and do get sun but with my COPD its brutal out in the humidity so no long periods, plus a lot of the meds prevent exposure to the sun. So I have to be careful in these here parts. I had so much going on, sinus surgery etc. etc. etc. as well, three within a year! Calcium cysts no less. @Joelf Yes, I thought about the steroids and was on them, had to drop 5mg a day and when I went to Remicade it was just too much kidney wise so I asked to get off of them. Felt like a mule kicked me Remicade has been effective in bringing my Sed. rate and CRP down while other biologic's failed and it has worked wonders on my spine. I'm on my 4th month on Remicade but my new doctor wants to add chemo. However, with Lupus that may signal an end to Remicade and will have to watch that as it goes. Tried MTX before but caused TIA's and my new doctor was the only who could explain why that occurred! Will use a less toxic one she said. @Amanda, Well I hope it helps, I'm placing a lot of faith on it probably too much but hey gotta keep the faith :rolleyes:
  6. Ok folks, My new doctor found I had very low Vit D. As opposed to the last three rheumatologist's whom, imo should have already looked but that's the luck of the draw. I mean I never knew about it until she asked if I was ever checked! Anyways, I understand its relative roll in all this sclero and etc. I just started 50,000 IU's twice weekly for 8 weeks and we will see where I'm at. My questions to all ye here in sclero land is; How long did it take to feel/see improvements and what were they? Did it help with fatigue and malaise? Did it help with pain? For example I have it bad in my feet and legs as in "bad to the bone" ya know like; George Thorogood I also have psoriasis and maybe a few here have it as well and maybe it will help that too. Soes, anyone have any experiences they would care to share?
  7. Hiya Amanda Glad to bring a smile your way :) Hey hey I had to ask and I rightly don't know if there are any good ones! :rolleyes: And I may just have 3 for now, but I'm not done yet and this new doctor does not mess around, she is super super awesome! :P Reminds me Ima make post asking about Vit D
  8. @Joelf Thanks for the links! Polyautoimmunity sounds kinky :emoticons-line-dance:
  9. Wait! do I get to choose which parts of each one! Sorta like a custom job! :emoticons-clap: 10! wowzers thats way too many! Ya jackpot thats what I hit all right :/
  10. Hi folks! Been a while since I posted and busy with it all, changing doctors etc. It was back and forth and yada yada yada but I'll pop in more often now. Now gets this, as the title says, I have Sine Scleroderma, PsA and Lupus! My, aren't I special? -_- As my sclero specialist opened "you are a very interesting individual." I mean all three? Gonna get fun now! :emoticon-dont-know:
  11. In many plans, doctors make their bonus money by reducing costly procedures for the insurance companies and that is why there are many like that out there. But Amanda is right about asking him about it and if it were me I would find another doctor flat out.
  12. That it is! They took two samples during the scope so must have found something. GI tomorrow then I'm heading home. We felt the psoriatic arthritis (PsA) was for sure, my local doctor was stopped on that though, but I stuck to my guns and good thing I did. . Just too much going on that psoriatic arthritis could not cover.
  13. Thanks Joelf True enough and already changing course for PsA and rather than trying old school DMARDs it's back to biologics. Got to get the inflammation back to earth, the predisone put a dent in it but it's still in the stratosphere. As for sclero we shall see. Going down an unmentionable path that worked well for me for 3 years Of course sclero was not in the picture not even remotely thought of. I am interested to see how that plays out, good or bad its worth a shot given the success I had back then. If not then will see what's the next step.
  14. *chuckles* Yes, two for the price of one! Thank you Amanda and yes it feels like 200 pounds -- er, kilos that is in your neck of the woods -- has been lifted off my shoulders! No more fretting about what and hopefully finding some balance and with these two its up on a tight rope. :D Cheers!
  15. All righty then sports fans! :) Sine Scleroderma and Psoriatic Arthritis is the official word. Not that its great news but it sure means a lot that the guess work is over. Having some endoscopy done on Monday and GI on Tuesday. Blood tests were funky at first glance but most likely due to current meds which has just changed. I'm going to let the doctor sort that one out . :P Different type of biological and no more DMARDs for now, thank goodness, due to TIA's. Peace. Out.
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