Saturday, October 14, 2017

Ten Years Later

Photo by Jamiesrabbit
Ten years ago today, I started this blog because I was four months into a mystery illness that had taken over my life. I was scared -- panicky even. I didn't know anyone who had ever been sick without a diagnosis for an extended period of time. 

One day, I was a (relatively) healthy stay-at-home mom, and the next I was suddenly too sick to take care of my toddler, who had to go into full-time daycare. I literally went to bed one night fine, feeling like maybe I was coming down with a cold, and woke up the next morning unable to get out of bed. It was the start of my roller coaster ride with chronic illness

Now, a decade later, what has changed? In some ways, a lot. In other ways, not so much.

The big thing that hasn't changed is I still don't have an umbrella diagnosis, the diagnosis that will explain most or all of my health issues. Things still ebb and flow between good days and bad. I still cope with intense fatigue and joint pain. 

The biggest change is that while I'm not entirely zen about my health, I've learned how to live within my limitations. I sometimes choose to push my boundaries beyond what I can tolerate -- I took a glass class this past week that was thoroughly exhausting and has left me in more pain than I've had in a long time -- and pay the consequences. 

But most of the time, I simply do what I can and accept that I can't do a lot of things I'd like to. (And sometimes I whine to my very supportive husband about how unfair it is. Like I said, I'm not zen about it. Yet.)

Due to a variety of reasons,  most of my health care team has changed. I lost my favorite PCP to Kaiser (an HMO). My immunologist committed suicide. My GI doc retired. My endocrinologist got tired of the hassles of private practice and went to work for the VA. A couple subsequent PCPs moved away from Portland and another became a hospitalist. 

The result is that I don't have anyone actually trying to figure out what's causing my health issues anymore. I find that mildly depressing but it's nice having a lot fewer doctor appointments.

My (then) preschooler will become a teenager in a few months, which is both scary and wonderful. I have some anxiety over whether I am physically up to arranging and hosting her bat mitzvah in a few months, but I try to tell myself to just face it as it happens because it will be what it will be.

I still have a passion for fused glass, and I think that focus on making/creating has been good for me. I wish I could do more, but doesn't everyone wish they had more time/energy/opportunity for doing the things they love regardless of their health? 

I'd like to say thanks to those who have read my blog (back before it went dark for several years) and offered support and empathy. Finding the chronic illness community through blogging really helped me feel like I had a community even when I was too sick to leave the house. My world shrank when I got sick, but the people I met through this blog and other blogs helped me feel far less alone. What started as a way to keep family and friends updated on the current status of my health grew into a safety net. I'm very grateful for all of you.