I am the National Institutes of Health Relapsing Polychondritis Patient 34.
The registered nurse coordinating the Relapsing Polychondritis clinical trial informs me of my trial placement.
Learning that I am Relapsing Polychondritis patient 34 causes my emotions to seesaw rapidly.
Part of me feels elated that I am at the beginning of the Relapsing Polychondritis clinical trial. Whereas, another part of me screams, ugh! Limited data, orphan disease, and a cure not on the horizon.
I find truth rings through my rainbow of emotions. The doctor spearheading the Relapsing Polychondritis clinical trial confirms the rarity, the gambit of medical symptoms and lack of medical data that surround Relapsing Polychondritis.
The scientists at the National Institutes Of Health will use my medical data to try to find a cause or trigger for Relapsing Polychondritis. At this time it is not known what causes Relapsing Polychondritis.
The medical symptoms of Relapsing Polychondritis vary from patient to patient. The disease may affect a person’s airway whereas another person may suffer from renal disease or joint inflammation.
I convey to the doctor heading the Relapsing Polychondritis Clinic that fatigue is one of my significant symptoms.
The doctor holds up one finger.
In my brain fogged world I do not understand the physician’s gesture.
The doctor goes on to explain that fatigue is the one number symptom that Relapsing Polychondritis patients express.
I nod in agreement.
I want to say, I feel worse than fatigue, but I do not have the word to convey the feeling accurately.
My body often wakes feeling it has run a Marathon the day before. I have not. My muscles are sore, achy and often spasm.
The heaviness of my body feels like an iron weight and often does not have enough energy to move off the bed. Once off the bed, it can take hours to drum up enough power for a ponytail hairstyle day (there is no energy to shower or wash your hair).
Morning often turns into the afternoon with nothing accomplished. I have anxiety thinking that my tired body has to get up. I am tired of being tired. I am tired of thinking. Most, the time my brain does not align actions correctly.
Today, I found myself trying to close a garage with my garage remote. I was frustrated the remote was not working. I even drove up closer to the garage to make sure the garage was receiving the remote signal. I finally figured out that my garage remote did not work because I was not at my house.
I live in a brain fog world. I am forgetful, I do not recognize faces quickly, and my speech is frequently choppy.
I hope the new medication the doctor at the National Institutes of Health recommended will help my cognitive function.
The medication has given me a nasty range of side effects, but the constant burning sensation of my ears has begun to subside. Hopefully, the inflammation within my body has slowed.
I have no doubt inflammation an essential factor spawning fatigue.
Even with the unpleasant side effects of my new medication, it is worth the trade-off.
With bittersweetness, I am grateful to be the National Institutes Of Health Relapsing Polychondritis clinical trial patient 34.
I hope my medical information will help the NIH play it back to me and forward to others.