I Think I Can
I often find I have stretches of time where my health takes center stage and then I may have months it is just in a supporting role. I am sure that based on the last few weeks of my posts it is clear that my health is unfortunately the leading actor right now in my life.
On Monday of this week things were amiss in my body enough that I knew I needed to see my general practitioner. The last two weeks as I have shared have been hard for me physically - unexplained reactions- feeling so worn out - and in truth it was easy to chalk it off to my mast cells and stress. But rare disease patients get normal people issues too. This is perhaps the single greatest lesson and regret I have for my Mom’s rapid decline - they forgot to look for the regular person issues - and we forgot to ask.
But on Monday of this week I walked into my primary care doctor and said -“pretend I don’t have rare diseases- what’s wrong?” Many tests and ultrasounds later I found my way home awaiting answers. The call came Wednesday morning at 8 am, “I have good and bad news - you just have an infection - but we can treat it with antibiotics.” Tears welled in my eyes- as I thought “CAN” is the critical word. Can we? I haven’t taken an antibiotic in over eight years and since then I’ve reacted over and over again to meds. And while my logical mind could understand that she could have called with much worse news - being told I had to take an antibiotic felt like my world was ending. It is something I have feared needing for years and yet on Wednesday morning I had no choice but to figure it out.
Of course, saying I need to do this and making it happen have other layers of complexity. I can’t just go to CVS, my medications must be compounded as I react to the dyes and fillers in normal medications. Over the next two days it took 22 phone calls with my two physicians and my compounding pharmacy totaling over two hours on the phone or on hold as I first tried to figure out what medicine could even be compounded, which medicine was appropriate treatment, how it should be compounded and then figuring out the desensitization protocol -when I take the first pill slowly over time. For two days it was all about the logistics, the easy part, knowing the truest test awaited me - getting myself to swallow a new substance knowing there were equal parts possibility that I would react.
It is a weird feeling, knowingly putting a potentially harmful substance in your body and taking other medications in advance to fend off any reactions. As I prepared to take my first 1/4 pill I told my husband I felt like I was standing in front of a firing squad just hoping they would miss me. I have now successfully taken 5 pills but victory feels far - I have 15 more pills to take by Wednesday as I take 4 a day.
I still feel pretty lousy, I’m sure the combined infection, antibiotic and extra medications to reduce reactivity are all factors in that but I am hopeful in a day or two I will slowly feel my energy come back. I am equally hopeful- that this explains why I have had such a horrible few weeks and that my body will find it’s way back to its own normalcy soon.
And the silver lining of it all? If I am successful, I will have conquered a huge problem I have worried about for eight years- needing an antibiotic. While it never seems fair to me for rare disease patients to also suffer from “regular illnesses” anytime I am faced with the average person problem I have figured out in my own way how to overcome it and often times in doing so, I have cleared a huge hurdle I never imagined possible.
Thankfully, as in all moments, I am grounded in tremendous support and love from so many family and friends. My husband even made me a sticker chart for every pill I take. So until Wednesday, every six hours, I will take my antibiotic- add to my sticker chart and secretly plan out my victory dance for when I have my 20 gold stars. I think I can ...I think I can...I know I can!
