We have been reducing the immune suppressants that were slowing the progression of the disease, but since I have had recent relapses and increased symptoms while on them, we decided that the complications and risk factors from the medicine no longer out-weighed the benefits. I had begun to feel pressure building in my head. After a couple of days, I began to feel my insides spasming. Then the tremors started in my hands. Random muscle twitching consumed my whole body. Luckily, I had an appointment with my Immunologist scheduled.
He introduced me to a new Physician's Assistant that had joined his practice. He reviewed my case with her while I sat feeling a bit like a dancing chicken at the circus...and probably resembling one as well. Lacking grace, I climbed upon the exam table. I tried with all my might to not fall. My balance has been hampered for several months. We discussed my current symptoms and a previous relapse I had after my last appointment. That relapse was the most intense one I had experienced since coming off of the steroid treatment. It left me with stroke-like symptoms on the left side of my body. I wasn't paralyzed, but had severe weakness. Like trying to walk through water, I was capable, but all movements required concentration and more effort. Sitting on the exam table, I was asked to perform a few tests similar to a field sobriety test. I failed...miserably.
My doctor and the PA agreed that I needed a new medication to calm this episode, but their first choices in medication would have been affected by my heart medication. The PA suggested a drug she had used with patients who have chronic pain. It would calm the nerves and slow the spasms and convulsions. I was sent home for the day as they did not know if I would be capable of working or driving. Remember the long list of responsibilities I mentioned before? They also include working a part-time job. I picked up my prescription and climbed into bed.
An hour into my first dose, I felt intense pain in my arms and legs. Shortly after, I felt like I was boiling in my skin. "These are just side-effects that will go away!" I assured myself. Nearly four hours after taking the drug, my phone rang. It was a nurse from my doctor's office. "Whatever you do, do not take the prescribed medication!" I was ordered. Uhhhh...too late! I informed the panicked nurse that I had already taken a dose. He then explained that my neurologist had been consulted and the new medication would increase seizure activity and cause a stroke in patients like me with a seizure disorder. "Fantastic!" I said, not even trying to hide my sarcasm. I was then instructed to increase my Gabapentin to 5 times my current dose. "Hmmm...two makes me stoned," I stated. "Well, this is what the neurologist would like you to try," he said.
So, I have been taking a magic carpet ride for the last week. I have not made it to the recommended dose yet, but I am getting there, and my body is slowly adjusting. The doctors have done all they know, are grasping at things to try, but it is ultimately in God's hands. This incident could have made me mad or scare me, but I am at a different place with my disease. You see, I was prepared in a way for this time in my life. Nine years ago, I layed in a hospital bed holding my infant son. He had been diagnosed with failure to thrive. He had stopped eating, drinking, and growing. He had lost too much weight and a feeding tube was the only thing sustaining him. We laid in a hospital while every available specialist tried but failed to figure out why. It was obvious that we were losing him, and becoming clearer that we were running out of time. His hair had fallen out, his skin was translucent, and the feeding tube had given him an infection in his lungs and sinuses. We felt helpless and all we knew to do was to lift him up to God and beg for protection. I knew we had not lived lives that deserved his grace, but prayed for mercy. Strangers entered our quiet hospital room in the darkest hour while we prepared to say goodbye to our baby. They sang Amazing Grace, and prayed over him. Thirty minutes later, my baby ripped out his feeding tube and screamed bloody murder. The tool keeping him alive was gone. I lost my mind for a moment, then noticed his screams had turned into a hunger cry. He drank two bottles and ate three jars of baby food. It all stayed down and he was released 12 hours later without a doctor's explanations.
God had us then, and he has us now.
