It’s time for my next update to my ESR chart. You can read about the Sed Rate Saga and my switch from Enbrel to Humira to treat my rheumatoid autoimmune disease back in December. I’ve been tracking my Erythrocyte Sedimentation Rate (ESR / Sed Rate) –a measure of inflammation -- since that time, trying to determine how well it correlates with my symptoms (quite well, as it turns out!), and subsequently using it as a measure of my disease activity.
A friend of mine asked me a tough question the other day. Tough in the sense that it’s hard to give a concise answer. But it got me pondering. The question posed was this: “What does your relationship with God do for you?” To compound the challenge of trying to be concise, this question was posed on Twitter. That’s a 140 character limit, for those who don’t know. I spewed off a bunch of words to try to summarize & capture what my relationship with God provides, but it didn’t seem sufficient. I wanted a simple answer that was all-encompassing and yet could still be unpacked (when character limits were not in play, of course). After thinking about this for a few days, I kept coming back to these words that Jesus spoke, “I have come that they may have life, and have it to the full.” (John 10:10) That’s it. That’s a simple statement that beautifully captures what I want to portray: through my relationship with God, I have been given life, and life to the full.
So, I signed up to receive prompts from WEGO Health for the Health Activist Writer’s Month Challenge – it’s supposed to be one post each day. I thought it might be fun, but now I’m thinking I can’t commit to doing this every day right now. Nonetheless, I will participate where and when I can. This may somewhat defeat the purpose of the challenge, but oh well…here it goes!
Day 1 (April Fools! I’m writing posting this on Day 2…oops):
Many rheumatologists have seen the benefits in measuring patient reported outcomes, rather than only relying on visible symptoms and blood tests to show disease activity and treatment efficacy (although, judging from other patients I’ve heard from, perhaps not *enough* doctors…). Patients definitely see the benefit in this as we know that we know better than anyone else how rheumatoid disease affects our daily lives. (Read more on the value of patient reported outcomes from RA Warrior) To measure the effect of rheumatoid arthritis from a patient’s perspective, many doctors use what is called a Health Assessment Questionnaire (HAQ) or some other type of patient survey.