I am generally a good communicator, but when it comes to describing a medical condition or giving an update about myself, I find myself floundering. Put me in a doctor's office and forget it. Flounder flounder. Here's an attempt to document the past few months.
Back in October I had plasmapheresis treatments done in the hospital, and I responded well to the treatments. I was talking, eating, and even singing well during the time in the hospital and for a few weeks after. My health started to decline enough to call again two weeks after being discharged, so I needed 5 more treatments through the month of November. Mike was noticing that since I was home from the hospital, I am frequently clearing my throat and sound congested. Each time I was congested in the throat, my talking and swallowing got worse. This was the beginning of the puzzle, like finding the corners.
At the neurologist appointment back in November, I was stammering over describing wether I could swallow every meal, just the beginning of meals, the end of meals, the end of the day, or the beginning of the day. It was a random and jumbled story, and my neurologist thought I was downplaying my symptoms. I may have been, since I like to sugar coat the truth, but there was something about what I was describing to her that didn't make sense. The edges of this puzzle were not showing the shape of Myasthenia Gravis.
She had me do the standard breathing test. Okay, take a deep breath in and exhale counting quickly. October's test I only counted up to about 20, which landed me a 9 day hospital stay, but at this appointment I got up to 42 when she stopped me and explained how excellent it was. She told me that she was perplexed because difficulty swallowing and breathing, with Myasthenia Gravis, go hand in hand. Also, my face was blotchy and eye lids were puffy. My neuro said, "This may be an allergy," so the plan was to see how I do over Thanksgiving break while away from our house and give a report when I return. If I'm not better, I will go on a prescription regimen that I will be on very long term. I could not listen to the side effects and risks again, having already heard and read what they were. Not a good idea for a visionary, like myself.
Well, Thanksgiving had past, and we had a wonderful time seeing our family. We actually saw every immediate family member, all grandparents, and some extended family. I was not swallowing well, probably a 6 out of 10 (10 being perfect swallowing) during the 5-day holiday, and tried to hold back exciting facial expressions, knowing it would exhaust me and I may not be able to eat the nostalgic holiday food. We got home late Sunday of Thanksgiving, and Monday was a tolerable day, swallowing around a 3 out of 10. By Tuesday evening I could not eat at all, and could have a few drinks and bites on Wednesday. By Wednesday evening, I knew what I was headed for. The big drugs. Another hospital stay. I called the doctor on Thursday. "Go to the hospital tomorrow morning, early."
I did everything I could to brace myself, but this time I was just upset and scared. I had a heavy weight on my mind and could not focus on anything. Not so much that I would have to clear out the schedule and get back in the hospital, but for the drugs on the back end of the hospital visit. The plan was to start IVIg treatments Friday, and once stabilized I should decide if I want to take Cellcept or Imnuran, which takes 6 months or so to begin working, so in the meantime, go on high dose prednisone until results happen from the first two drugs, to then have hope of remission. Phew. I was not havin it. I wanted to trust the protocol and the insight of my doctors but for some reason didn't.
I was admitted to the hospital Friday, and somehow the air started to lift. I knew family and friends were praying and a peace that surpasses understanding was guarding my heart, I was asking and asking anyway. Just after I was filled with peace, my neurologist called my hospital room. "Joanne you sound good, and you have not even had any treatment yet. This must be an allergy and you have to move out of your house. So, I'm not going to start you on the prednisone and cellcept until we figure out if this is an allergy or not. I am now taking my neurologist hat off and putting on a detective hat!" We had a good laugh on the phone. I'm thinking . . .Oh geez, move out of the house? Let's dosey doe with a bit more this week. Give us a few more issues to handle!
That evening, they pre-medicated me for the IVIg with benadryl. After the trippy feeling of iv benadryl, I felt immediately better. I ate my entire dinner. My voice cleared up, I was talking and eating, and called like 3 people. The excitement was all over as family buzzed the message along.
The rest of the hospital stay was fun. I interceded for a lady on the ward who was hallucinating, shouting out many stories and commands. After a few times praying for her, while walking by her room, she quieted right down. I was able to testify about this to one of the chaplains, and he was grateful that I brought it up and going to use it as a teaching point to the other intern-chaplains. The chaplain also was interested in our church's stand on the spiritual gifts and the social media we use called "the city." He is hoping to bring "the city" to his church. We had a few chats about Wayne Greudem, his former professor (wha!?), hospital infrastructure, church structure and discipling members of a church. Not every day I get to pick at the brain of a PhD in Family and Education Chaplain guy who was taught by the Wayne Greudem.
I regained confidence, I was finally speaking well, and described the allergic symptoms to so many nurses and residents, that by Monday when the team who cares most about my admission came, they ordered me an Allergy consult (meaning they will call a doctor who specializes in allergy to check me out from an allergy standpoint). Boy was that fellow good. A "fellow" is the 3rd step in training for a doctor, after medical school and residency, generally in an area of specialty. So my favorite person of the whole visit was the Allergy fellow. He was with me for an hour Monday morning, listened to the whole story and put together pieces I, and Mike, had not thought of. Rather than wracking our brains about what the allergy is, and tearing down our house or brazenly moving away, he put me on an allergy regimen to stop allergy from effecting me. That has helped tremendously. He was like our puzzle maker, smoothed out the board and gave us some clarity. I lost that metaphor a while back. Whoops.
So I'm home now for the 5th day. I have been waking up looking allergic and not talking, but by the time the allergy meds kick in, everything lifts and I am ready to go for the day. I have small spells of not swallowing well or slurring a few words, but a lot better than I had expected. We are still considering wether I am actually going back into remission with the Myasthenia Gravis or if I am just keeping myself at a manageable state. I do not know. Mike is such a caring husband, he would not like me to have swallowing issues at all, and wants to work towards the disease going into full remission. Of course, so do I, but I am used to compensating and being flexible with the symptoms.
On top of all of this, I will be in a study at NYU and have an appointment with one of the doctors there and then will have a 3rd opinion at Columbia a few days later. All of this news came during the first day home from the hospital! My dad was super-nanny for the whole week and made the week run smoothly, intuitively jumping into my role. We were so happy to have him here and enjoyed the company to boot!
I was going to aptly throw in the puzzle metaphor, something about God being the master mind and perfect piece-carver, but will let go of it for now and share our detailed hope, the way our heavenly father knows our every move and way, and I hope it gives you just as much hope and peace as these words give me.