Climbing Again
“Are you in pain?” a new physician asked me last week. I didn’t even know how to answer, I paused and said, “ I honestly don’t know. I think I always am?” My mind flipped through my day so far and there were too many moments of discomfort to count. I could barely stand that morning when I got out of bed as every inch of me was sore, bending down to get something from the dishwasher made me almost keel over from dizziness and my head was pounding after 6 hours of phone calls for work. But is it weird that until intentionally thinking about this I had already forgotten those moments? Instead, I was distracted by the never-ending ringing phone, the dinner I had to cook and homework my first grader still needed help with.
Rare disease patients feel pain daily. But I’ve long stopped worrying about the aches I feel each day and I have learned symptom tracking only gives attention to things that will never be explained and only heighten my anxiety. I’m accustomed to living through my pain and discomfort daily or I would never get out of bed each morning. And this is true for everyone I know in my rare disease community.
I’m not sure my answer about my pain helped offer any clarity to my very cloudy situation. I continue to have problems that began this summer. Every time it feels resolved something happens again. My last two weeks have been filled with new physicians and testing to try to answer questions and help me feel better. Over the years, I have learned the critical importance of not always blaming my mast cells - though it is certainly easier - but to make sure it is not an unrelated issue.
I was so sure this time it was my mast cells- the symptoms fit so perfectly. But as I listened to my doctor tell me the CT scan did find something that needed to be dealt with - my heart sank. Tears welled up in my eyes, knowing I should be grateful it wasn’t something worse but I also knew that for me any small procedure or treatment would be like climbing a mountain in the dark. My mind spiraled about the added challenges of COVID and having to be alone in a hospital - a situation I have been trying to avoid since the pandemic began.
Thankfully, it was my Mast cell physician who gave me my initial results and she assured me I would get through this, reminding me how much I have already been through. Many others have said something similar as I have shared my news and no doubt all are right, though I am not sure I have much choice in the matter. After my initial panic, I replaced my fears with action as I began calling the rest of my medical team, letting them know I would know more soon but that I would require their participation knowing coordinated care will be key to my success.
Tonight, I am anxiously awaiting my appointment Monday with a new physician, this time in NYC, who I think will ultimately be the one to help me. And while I am still very anxious and aggravated, frustrated that yet again I have a new health challenge to face, a new mountain to climb, a small glimmer of hope has also found its way in. Hope that the pain I have grown used to feeling may actually improve and hope that my days of feeling good will far outnumber the harder ones. For those are the days I am most grateful for, knowing now what a gift they are, to not just exist but to feel alive and well.
