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Hi Chris
I agree with enzed about sticking to reading this website–it is the upbeat site with the helpful reassuring advice. Some of the others are scary and I don’t think useful given your emotional state. I am not sure if this will help you the way it helped me but I did two very important things when I first got diagnosed. First I educated myself and threw myself into every healing thing I could afford to do–diet, medication, many physical therapies, meditation, supplements, acupuncture, exercise, sauna– you get the idea. I thought, these are the things I need to do to live. And then I came to the place of “okay so what if I am not going to live as long as I thought?” “How do I want to live? What will I choose?” It was abundantly clear to me that I wanted to spend whatever life–and who ever knows how much that is anyway– I have left in peace and love and joy. And I let the fear fall away. I think that may be harder for you at 22 then it was for me at 53 (my daughter is 22 and I remember being 22 if you can believe that LOL), Anyway, this strategy worked for me in the most amazing ways. I have both my illnesses close to remission (I will post update) and I am happier than I have EVER been. I took a chance on doing things differently and cut my work hours, started a relationship with an American (I wrote to him for two years before meeting him because I said being together was impossible). But guess what–it’s not and he is the love of my life. I sold my house, let go of all the things that I previously thought of as important. SD was a great wake up call. I know it’s hard to hear in the space you are in but there really are gifts in all things. Try to be calm and focus on healing. If you can find a free meditation group to go to that might help you a great deal. Feel free to message me if there is anything I can do to support you
kateSystemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, CChris, when my adult daughter was told she had scleroderma, which we had NEVER heard of, and that nothing could be done, I remember the panic and fear I felt as a Mother after researching SD. I couldn’t sleep or concentrate. I was determined there must be some better answer. That’s when I found the Roadback.
As it happened, my daughter couldn’t easily get a scrip for MInocin and I was ready to take her to Boston ( we’re in Canada). However as her skin lesions did not worsen she waited and it was not until she started AP many years later for RA that the SD also began to improve. ( I mentioned this on an earlier post.)
This is just to say that I was distraught and really scared. Finding the Roadback saved her. Please try not to be scared. Put your effort into finding out what to do and get started. Yes, it’s slow but you’re young and fit and you can do this. Everyone here will support and help you. Really – it will be OK.
marg
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