I have not written in ages. This blog has transitioned from my life once my mother died, then how I was trying to be a mother without my mother, to how I was trying to be a mother with a serious illness that affects how I can mother.
Throughout each phase I had let that event define me. First I defined myself as someone whose mom had died. I then learned to let that go. Then I became someone who let my illness define me. And I have since let that go, and with that, comes my lack of writing. I don’t want to share updates about my appointments and health. I just want to focus on everything but…
But I had a good snap back to reality this spring. Recap: hospital, surgery, hospital, prednisone for just over a year that majorly fucked with me, tapered off the prednisone, and added imuran – a full immune suppressant.
The plan is to taper off of the imuran as well. I was on a full dose of 150mg for a year, then had success tapering to 125mg. Waited another 6 months and was hopeful to taper again. This was one of the plans my rheumatologist and I had discussed previously. But when I met with her, she was hesitant to try a taper so quickly. She reminded me how long it took for me to get the tapering of the prednisone right, and didn’t want to rush things. But I could tell she saw the disappointment in my eyes, and agreed with me to try.
It maybe lasted three days before I knew I shouldn’t have tried tapering again. First I told myself my ankles felt off because I had been flying. The next day I told myself my swollen ankles were from all the walking I did that day. The third day of flare up symptoms, I gave in, and took that half a pill along with the rest of my dose. That tiny speck of a pill made me realize how much my body is so dependent upon my meds.
It’s easy to forget I am ill. And have a disease that we are just winging with how to treat. I worry that my life becoming busy and overwhelming again will cause me to relapse significantly, but I don’t have an answer how to combat that.
So for now, I will continue to take two and a half pills, instead of two. And find the positives in each day. And be grateful that this tiny bit of a 1/4″ sized pill, allows me to dance, and work, and most importantly, mother.