I have been feeling ... off.
My Remicade dose was doubled for my previous doses in reaction to my continued inability to achieve remission. I didn't consider that this would be much of an issue, and the pre-meds were going to presumably make the process better. However, my experience with the pre-meds was less than delightful.
Over the last two months, I've been noticing an increase in hair loss, worsening fatigue, nausea, hip pain, and general malaise. I tried improving my diet, going for walks/bike rides more frequently, and practicing good sleep hygiene. None of that seemed to make a lick of difference. Luckily, I had a pending appointment with my GI so I knew I could review my concerns at that time.
The appointment was fairly lackluster.
My dose of Remicade was going to slowly taper down to regular dosing, pending that my symptoms don't worsen. That, and a TSH (Thyroid Stimulating Hormone) would be added to my next labwork to assess if I have a component of hypothyroidism contributing to my symptoms. I also tried to discuss the use of VSL#3 high-potency probiotic as it was suggested to be previously by another GI physician, but I was meet with a disinterested reply - that it may or may not work, Remicade is the main basis of my disease management. Great.
I have been very inconsistent with taking my Imuran, as I found I was getting more infections when I was taking this medication. As well, Imuran has a slight increase in the risk of developting Hepatosplenic T-Cell Lymphoma. I have been off it for several months. I was reminded of the use of Imuran to prevent the development of antibodies to Remicade; thus increasing it's effectiveness for a longer period. So back on the Imuran I go.
I also need a Bone Mineral Density, a consideration for my hip pain and long history of prednisone use, which can be associated with early onset of osteoporosis. Fun.
Life goes on, however.
I was volunteering for Folk on the Rocks, a local folk festival that is full of music, food, sand, and sunshine. I was volunteering at the beer gardens, keeping the hooligans at bay and making sure everyone is having a good time!
I was fortunate to be volunteering with some good friends, who don't mind getting a little dirty in the sand!
|Our Volunteer Shirts!|
|My little friend Sarah! Isn't she cute?!|
Although I wanted to dance in the sand all night, after volunteering and being in the sun all day I went home earlier for a shower, food, and sleep.
My feet were filthy!
The Zing! booth was also there, so I was able to indulge in vegan and gluten-free foods. I had about two blueberry smoothies and black bean brownies each day. They were DELICIOUS!!
I also went one evening to check out Theater on the Lake, in which a stage is quite literally on the lake. My brother wrote and directed a play, which was fantastic. There were also some clowns from Argentina that were ... bizarre.
I have also been spending time with Mocha and my Dad, going fishing on calm nights. Unfortunately, lots of bites but no fish!
Awwww look at that face! She's such a cutie!
This last week has been very lazy, due to worsening of my fatigue, malaise, and sleep issues. I am hoping that, with time, this will improve. I have my next Remicade infusion in a few weeks, so I'm hoping for the best.
In the meantime: Lots of sleep, nutritious food, and being kind to myself.