Hi everyone! It feels tremendously weird writing right now as it’s been quite some time. The month of May was such a hectic time for me…it was the end of the school year, I was involved in numerous volunteering efforts, there was my birthday, Mother’s Day, infusion treatments at the hospital, and in the midst of it all, I could not bring myself to delve into the world of blogging. I’m sure other Lupus patients can relate in regard to the ups and downs of having this conditions. There are moments when things are going so well and all you can focus on is seizing the moment, and other times when things are so low when a solace escape is enough.
Since my last post, I’ve received 2 infusion treatments of Rituximab which is a medication used to treat some autoimmune diseases such as Lupus and various types of cancer. Prior to receiving the treatment, I was very optimistic and hopeful that it would be effective. I am happy to say that it has! Since May, my health has improved tremendously! I am able to spend more time enjoying the company of my family and friends and my exercise routine has graduated from 15 minutes of walking my dog, to 20 minutes on my new stationary bike following along with my favorite Peloton instructors!
Earlier this week I had my first follow-up appointment with my rheumatologist since the treatment I received in May. Of course she was thrilled to hear about how well I’ve been doing. Unsurprisingly, her immediate suggestion was that we should being tapering my steroids. While I am usually cooperative and willing to try different suggestive treatments, I am NEVER excited about going below 10mg of prednisone. The difference in my body’s ability to function normally is terrible. Above 10mg feels great but functioning below 10mg feels impossible. Nonetheless, I did say I was flexible, and yesterday I did try to drop down to 9mg…it was awful! I slept all day, had very little motivation to get out of bed, I was consistently in pain, and felt little to no relief over the course of the day. In spite of all this, I remained positive and woke up this morning (5:30am) with hopes of today being better than the day before. Within an hour I could tell that it wouldn’t be. So I decided to make the executive decision and bump my dosage back up to 10mg–WHAT A DIFFERENCE! There was a pep in my step again, I jumped on my bike and willingly did my workout, gave Cas an extra long walk, and even found motivation to sit and share all of this with you.
I share this to remind you to listen to your body and what it needs. At the onset of my blog, while I was home for 5 weeks, I needed to blog everyday. It was so therapeutic for me! After months of consistently doing well, I needed to take time to enjoy the special people in my life–outside of my home. Right now, I need to keep my dosage at this steady amount so that I can continue doing–and enjoying– all of the things I love to do…including writing.
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