It's been about 20 days since I started the higher dose of steroids, and each day has brought little victories that move me closer and closer back to feeling like I have a normal, healthy life again. On Monday, I ate lunch at work. Tuesday, I worked a full day. Wednesday, I nibbled a (cooked) green bean. (I know, it's pathetic, but the idea of eating veggies again? So excited. I miss my green things.) On Thursday, I threw all caution to the wind and ordered a (decaf) caramel macchiato. I sat in Starbucks for nearly 3 hours, tentatively sipping, and waiting to see what would happen. (Nothing!) And last night? I apparently slept through the entire night. Small victories, but each one moves me a little bit closer to feeling normal again.
After much debate on my drug choices, I ended up deciding to go back on the 6mp I had been on before. I'm a little bit disappointed that I wasn't able to stay off them, for the reasons I mentioned before, but I know that being healthy and achieving another long term remission is more important. I'm really hopeful that they'll work again this time, although it'll probably be late November/December before we know one way or the other. The benefits I'm seeing right now are from the steroids, and I'll be on them, slowly tapering down the dose, while the 6mp builds up.
In the back of my mind lurks the fear that I'm only better temporarily and that with any 10 mg drop in steroids, all of the symptoms will come rushing back. I have to keep actively brushing this thought from my mind, reminding myself that I've achieved remission with 6mp before and telling myself it's going to happen again. It seems that getting healthy has been one part medical, one very large part psychological. Which is, of course, the most obvious statement EVER.
I have to say though, that throughout this turbulent month I have been so very fortunate in many ways. For starters, I am married to a man in medicine. There is nothing delicate and lovely about the symptoms of ulcerative colitis, and it's always made it easier that I've never felt like I had to tiptoe around what was going on with my body and my health with him. (I will also say that after seven years of having this disease, I have personally become way more comfortable discussing it. For instance, telling my boss I needed to work from home because "the bathroom in our office is too far away and I might not make it"... probably would not have happened two or three years ago. I'm over modesty.) But more importantly, Matt has always gone out of his way in the things he does to make each day easier and to be sympathetic to the unpredictable nature of the disease, and for that I am so very thankful.
I've also been fortunate to have some really astoundingly wonderful medical care. I know our health care system is broken and in fact, I had a short period of time in my life when I had no health insurance and experienced the hell first hand (crying in Wal-mart pharmacy? Check), but I just can't get on board with people who bash physicians, who are just a product of the broken system. Ok, I know - I am absolutely biased on this issue. But, my physician (not the one I'm married to, the one who actually treats me) is a wonderful practitioner. He responds to emails within a few hours, he never rushes through appointments, he explains my options thoroughly, answers my questions... he's just great and that's that.
I really have just been so blessed throughout the course of this flare in so many ways - from friends and family members who have given everything from Gatorade to sympathetic ears to prayers (especially my mom, who deserves an award for fielding the I'm having a pity party and I want someone to attend phone calls) to the fact that I've had the flexibility to work from home for nearly 3 weeks to the fact that I do have health insurance this time around to keep on filling script after script.
I sat down this morning to write an update on where I was with my flare, and I didn't expect this to turn this into a soliloquy of sappiness but it feels much better to focus on what is good, rather than dwell on the lurking uncertainties or fears that still remain. Today, I am cautious enough to know that this not the end of this particular journey, but hopeful enough to expect that it is around the corner. That, I believe, is a pretty good place to be. I'll take it.
3 weeks later, they still look this good.
I'm putting steroids in their water too.