Risk and Remission

Going into remission always feels strange. Yes, my SED rates are still high and yes I still have high levels of fatigue because of the enormous amounts of 1) meds I take and 2) muscle loss from being ill for so long. But being in remission itself is both good and odd.

I'm GRATEFUL FOR IT. I can do the things I've LONGED to do. And yet- it is always like holding a breath. In the past I've counted too much on STAYING WELL. I've had more bravado. I've forgotten that I may get sick again. I've stopped going to my rheum or my neuro. And sometimes I've even gone AMA off some of my meds (for money or because I felt better). And in every case- I had a flare. Sometimes it took several years.

I take EXCELLENT care of my health. Unlike most "typical" Americans, I cannot eat fast food because I have celiac - so I simply don't go to such places. I generally don't eat out either- and when I do- I pick and choose wisely. When I can- I get daily exercise. So when I am healthy- I am THE PICTURE of health. Most of the time I'm so healthy except for my meds, I even forget that illness has been part of my life.

Part of me wants to forget forever. Part of me wants to walk away from chronic health issues. Not because they are laborious - because they aren't really - once you learn to deal with them, they just are routine. But because the razors edge never stops being steep. When a flare comes back - it comes back harder the next time. It is never a good time to get sick.

I'm always in the middle of a flourishing career, a lovely relationship, friendships - MY HAPPY FUCKING LIFE. There is NEVER a good time to be sick. There is NEVER a good time to deal with it. I've had life long friends who rolled with me. But mostly- I just go under ground, suck it up, deal with it, and then come back up for air and life has gone on without me.

No matter how loved we are- life never stops when we hit the ground to heal. And so I have my "emotionally healthy sick friends" and my "healthy friends" and my "comedy friends" and my "creative poet friends" and my "knitting friends", and my "xyx" friends- I have friends of all stripes all over the world. I reach out for them only because in general - when I get sick, I don't feel like reaching out much. So I return my reaching when I'm feeling better.

Yes. I live in fear of the flare. Yes I live in fear of living life like this. But THIS is how I've rolled from the time I can remember. Cycles of health and vibrance and then times when I am unwell again. I know no other way than to grab on to life and celebrate it when I am better. I must write now, live now, work now, CELEBRATE NOW.

These are the cards I've been dealt. And quite frankly, I've won a few rounds with these cards.

Sure I want what most people want - the picket fence, the loving life partner, the emotional security, the children, the job, the quality of life, the garden. It's the life I'd pick again and again if given a choice. But I don't have that now, so I must continue the path I do have - which is building what I've got with gratitude. AND LIVING.

I'm navigating my razors edge with fewer backup plans. Because I think God wants us to live the life we've got. I'm willing to do the work. Yet, I'm the first to admit, I've never had THE TRUST that life would work out. I've been wrong.