I'm really happy for only one part of your situation, and that is, that you are posting here. We all really miss you when you are offline for any reason! So come what may, good or bad or indifferent, please keep our connection as best you can. (And that goes for all our members.) We aren't here only for the good times, we are here for it all, or what sort of support would we be?
As you know, the natural course of scleroderma is to wax and wane. And wax and wane. And wax and wane. Like a roller coaster ride, with all the screams but none of the fun!
Unfortunately, the waxing part brings with it all sorts of stresses, and stress exacerbates inflammation, and away we go again. I try to pick away at the stress, doing every tiny thing I can think of to reduce it, as I figure, even a 1% reduction will eventually hopefully add up to something. Capturing time for living, and enjoying, becomes increasingly difficult when we are sick, and that frustration adds to the burden of trying to deal with the never-ending rounds of hospitals and doctors and tests.
You are doing absolutely marvelous to be hanging in there still, despite everything that you have gone through and are continuing to go through. Like you, I figure, the doctors and the treatments are just part of the equation for our well being. The other part is the tiny bits of goodness and little blips of joy and tiny dabs of happiness that we can work into our life, but we have to fight like crazy to find and get and cherish them, and they are so easily lost in the shuffle!
I know you're doing all this list below, and lots more, but some of this could be fresh ideas to newbies who might begin experimenting with their own stress reduction techniques.
This list is for anyone struggling with the waxing part of autoimmune disease, just notes from my own experiences of tiny things that have helped me, and I'm sure you, and others, will be able to add to it mightily!
In keeping with our guideline to avoid religious connotations, here is my layman's version for ways that I try to reduce stress in order to reduce inflammation:
1. Forgive everyone, for everything (but remember the lessons, and the people who are best to love only at a distance). I pull up a thought of anyone or anything that hurt or angered me, face it squarely, offer the thought forgiveness, and watch it get tiny as dust and then blow away on the wind. Some people or situations require multiple breezes, but that's just fine. It doesn't matter if it's from today or many decades ago. If it's there, if it's harboring resentment, it's impairing my stress level. That increases inflammation. So, away it goes!
2. Ask for my energy back. Okay, this one is weird. Sometimes the forgiveness thing doesn't work for me. Maybe I'm still too mad to really forgive, which is only human. Sometimes forgiveness is a process and requires time or counseling (even for me). So what I do then is, I picture the person or situation, and ask it to please "give me my energy back". I don't care if the issue still exists or still needs resolution, I just need the energy back that it is absorbing.
I imagine cutting the cord of energy between us that is draining me. I picture the energy being restored to me. It's amazing but then right away another person/issue will then pop into mind that is depleting my energy, so I will ask it for my energy back. I know it sounds beyond silly and not something to discuss at the dinner table lest people think you wear an aluminum hat, too. But you can quietly do it and nobody will know the difference.
3. Find and do a one or a five-minute vacation, and take as many of them as you can cram into a day.
For one minute, I do deep breathing or visualize my favorite relaxation picture. If you don't have one, you can borrow mine. I recall sitting under a birch tree, on a hill overlooking a lake. I hear the waves lapping, and loons calling. I smell fresh wintergreen, moss, and pine. Each outgoing wave carries away one of my cares or fears or worries, and each incoming wave restores my hope, my peace, and my energy. Breathe in relaxation, breathe out stress. Breathe in fresh minty air, breathe out toxins. Breathe in calming waves, breathe out cares.
I do small stretches when I'm waiting for things in the microwave. Neck stretches are the best for relaxation!
Yesterday, I took off my shoes and walked barefoot in the grass for a few seconds and tried to crystallize the memory of it. Anything savored can be a mini-vacation -- even peeling a carrot or cutting an apple, if it is done slowly and attentively enough. So, I try to slow down and savor when I need to relieve stress.
4. Make nice long lists of enjoyable things, or things I'm grateful for, to drum up more of a relaxation response. When I can't do anything at all, I can at least make a list or read the list of things that make me feel better. I find that if I put my mind to it, I can always do something on the list, even if it's just taking a nap, or having a cup of camomile tea.
5. I find what makes me laugh the hardest, and seek it out in doses. I view laughter as a medical treatment and literally schedule it into my week (I prescribe a healthy dose, every other day, for myself), whether it's watching funny videos, reading a humorous book, hanging with a funny friend, or going to a stand up comedy show. Even forcing laughter, when there is nothing at all to laugh about, induces a relaxation response. I just try not to do that when other people are around. But laughter yoga is based on this premise, that it is not necessary to be inspired, in order to laugh and benefit from it.
There now, I've exhausted my chipper little ideas for the day. It's okay to just laugh off this silly list. I guess I just want to say, there are many times with illness when we can't do anything more medically at all, and neither can our doctors. But we can take many tiny steps to induce a relaxation response and that reduces inflammation, and also helps reduce attacks of Raynaud's.
Plus, with illness, we need at least ten times more stress reduction than the average person, because there is no end to the stresses and some of them are on a massive scale, like you've continually encountered, Miocean. And you've set a fine example for all of us in overcoming one major hurdle after another. Even if it's just to explain your predicament on the forums, that's a great stress-buster, right there, and another wonderful method for letting go, too.
None of win the mortal game of life, in the end, but many of us still manage to win it all along the way, like you, and the vast majority of our forum members, by basically letting ourselves feel defeated, from time to time, but not actually be defeated. Somehow we hoist ourselves up together and make it for another bit, as best we can. It's not over til its over, and we are entitled to all our feelings about all of it, along the way, and to share them here.
Thank you for setting a good example for our other members, on the importance of sharing our journeys with each other, all along the way.