I was fortunate enough to grab an appointment with my awesome rheumatologist this week. When she saw me she was both amazed and concerned about the intensity of my swelling and general puffiness. She acknowledged how miserable I am and we decided to increase the prednisone drastically for 15 days, in order to break my hideous flare. Once we get confirmation of a negative tuberculosis test, I can start Benlysta . She also agreed to fill out whatever paperwork I need to start disability proceedings. That’s a relief, since I can no longer work. Continue reading “On Fat Pants and Caftans”
Last week I finally made a tough decision: I gave notice at work.
Lately my pain and exhaustion have both gotten out of hand. Despite changing jobs yet again, all my diagnoses caught up with me. While I could give it my all at work at the vet clinic (cats are a hell of a lot easier on a broken bodied vet tech) for a little over half of a shift, but then I had nothing left for my family. Continue reading “On Work, School, and Generally Being a BAMF”
For years I had a skewed idea of the path I should follow in life. I thought I had to accomplish big things and make monumental changes to the world around me in order for my life to matter.
This was a recipe for massive discontent and frustration. As my health situation changed and my ability to make the kind of contributions I wanted waned, I grew increasingly anxious and depressed. When my self worth is tied into my perceived output and career goals, I feel like a failure when I “underachieve.”
Why so much pressure? Continue reading “Finding and Cultivating Joy”
This week is a milestone for me, and it’s kind of hitting me hard. On June 12, 2017, I spent the entire day at Barnes Jewish Hospital knocking out all of the testing and meetings for my pre-transplant evaluation. They usually do it over two separate days, but then I still worked full time, so they agreed to do it in one day to minimize time taken off.
My kids started tee ball last month and absolutely love it. Last week, though, the coach was out of town and asked for a volunteer to help organize the game and team pictures.
I said No. I have no experience with tee ball (or any other ball for that matter.) Another parent stepped in.
A few hours before the game, I managed to sprain my foot. I iced it, wrapped it, and hobbled off to watch my boys. The parent who took over asked me, limping and grimacing in pain and all, to help out. Continue reading “The Power of No and Spoon Preservation”
People will often ask me, “How are you?” For a spoonie on the kidney transplant list, that’s a loaded question. How do I answer?
I could spew the whole unvarnished truth. “Well, you know, I’m exhausted. I’m short of breath, various parts hurt, I’m worried about how my health is impacting my marriage/kids/finances/career, I have to choose my wardrobe based on what the day’s symptoms are, the meds cause wild weight fluctuations, and sometimes the renal diet is a regular bummer. Potatoes, amirite? How are you?”
Yeah, no one wants to hear that.
The alternative is, “Fine, and you?” That’s not very truthful. I’m not fine.
I’m learning that as I get sicker and navigate what my new normal is, not being everyone else’s version of okay is really okay. Continue reading “I’m Okay, You’re Okay”
My body isn’t behaving the way I want it or expect it to, and that’s a real struggle.
A prime example is what happened Saturday. I worked a short (and mercifully easy) shift, then came home and changed my clothes. The goal was to get my kids out of the house for a few hours and to give my husband a break. The boys and I loaded into my car and drove to a playground. To my joy, they had painted hopscotch boards.
Back in middle school I was a hopscotch queen. I’d spend all recess with my girlfriends playing. I could hop a board in no time flat.
Well, now I’m 41. And then there’s the added nastiness of my kidney failure and the breath stealing anemia. I temporarily forgot how sick I was, until I completed half my turn. My kids were watching, and I had to finish, but I did it while gasping for breath. Continue reading “Finding My “New Normal””