This summer, July 9th to be exact, I was supposed to kick off the most wonderful week of the year with 14 of my favorite ladies (ahem, don’t make me list you all… I can). That Sunday would have marked the beginning of my 4th year volunteering with Camp Oasis as a counselor. Despite taking the time off from work, packing all of my belongings (or at least MOST of them), cleaning out the car, ordering birthday surprises for one of my besties, and generally just planning ahead… My body had other plans and I wasn’t thrilled about it. In fact, I was pretty upset.
Since we haven’t had a chat in a while, it seems relevant to mention the fact that my gastroenterologist and I decided to give Remicade another shot (and here’s why). Entyvio had kept me in remission, but the endless sinus trouble and constant joint pain had all but done me in. To date, we’ve added four medications to help combat the side effects and gaps in treatment (that naturally come with a gut-specific drug) that I have been coping with. Rather than continue that path, it was time to streamline and help me find some relief.
In case you haven’t guessed yet, that experiment failed. 7 days after infusion, I began experiencing severe upper back pain. Not the “oh, I must have pulled something” type of back pain. This pain was completely paralyzing and I couldn’t even roll over to get out of the bed or make a trip to the bathroom. To keep a long story short, within 36 hours, it was determined that I was having a systemic inflammatory response.
There IS good news in this little update of mine. At LEAST I was in Michigan by the time my symptoms had become so severe. By no means was this convenient for my husband, my mother-in-law, or my sweet Maggie Mae… but I was receiving the best care I could have asked for. University of Michigan Medicine helped to get me back on my feet (with the help of some steroids, fluids, and pain meds of course).
I also know that my amazing campers (I’m sorry, you’re Leaders in Training now) had 3 wonderful counselors. I couldn’t have hand selected a better team to guide them through their final year of camp. They sent pictures, videos, cards, gifts, etc.
Next stop? Stelara.
What’s going on in your world?