Learning To Tie Shoes, Button Shirts, And Swallow Pride
Once the Neurologist diagnosed some kind of an autoimmune issue, (Guillain-Barré) there was one treatment that would stop it. IVIG, which is short for Intravenous Immunoglobulin therapy. It's a series of IVs your take once per day for 5 days, sometimes more if the therapy calls for it. The Neurologist told me that this is a pretty standard treatment, and would both pinpoint the diagnosis, and begins to stop the spread of the Guillain-Barré syndrome. He wanted me to start right away.
This next part of the story is the Health Insurance part of the story. Like most folks, my use of the company-issued health plan was basically co-paying for check-ups, and one or two trips to the Urgent Care facility for a kids' x-ray. Then complaining how much I would have to pay later. My issue now was that the approval process for the treatment I needed was going to take 10 to 15 days at the shortest, IF they covered the treatment at all. 10 to 15 days? In the last 15 days I had lost my ability to stand, walk normally, feel anything in my hands or feet, drive and God knows what I would lose in the next 15. Even "rushing" the approval would take at least a week. I didn't have a week. The Neurologist told me that one option was admitting me as a patient to the hospital for treatments, which would more likely be covered. Well, if I wasn't going to be covered for this treatment, I sure as hell wasn't going to risk 5 days in the hospital. I had to work, and stuff to do. I felt that wasting a Hospital bed on me wasn't worth it. It was then the Neurologist said something that wasn't intended to scare me but did. "Well, if you don't get these treatments, that's where you're going to end up anyway."
After discussing the possibility of having to pay $12,000 out-of-pocket for EACH of 5 Intravenous Immunoglobulin treatments, my wife and I were in a difficult situation. We frankly just didn't have the money. Honestly, this was the worst part of the story, realizing that there is relief right around the corner, and knowing that getting it would ruin us financially. How many of us are a $60,000 medical bill away from upheaval of everything we've worked for. Even though, I still felt like the hospital was somehow the 'wrong' option. It didn't seem fair to admit me just so insurance would have to pay. So we decided to cross our fingers and hope that the approval would come through.
Just before the weekend, my 5 daily treatments would begin. About 600ml of someone else's antibodies introduced to "flush" out my improperly working immune system.. And ironically, before each IV I would have to sign, with my crumbly fingers that couldn't hold a pen, a form stating that if it came back uncovered by my insurance plan, I would be responsible for the cost. The first treatment took almost 8 hours. It's a slow drip, just in case your already whack immune system decides to revolt on you. You sit there, and sit, and sit. Hoping this will work. An hour goes by. I don't feel different. Then 2. Then 4. Day one is over. All I am is tired. And stiff. And worried that somehow I will bankrupt my family.
Each day was the same. Go to work. Leave immediately to the Infusion Center. Scribble a signature. Leave a few hours later. The nurses and staff at Genesis were exceptional. The level of care is clearly a priority. And on the 4th day of treatment, I didn't have to sign a form. My insurance came through! Instead of 60k it would only be about 6. That probably did more for my state of mind than the treatments we at that point.
I did notice that that the progress of the numbness had stopped. But I was still uncomfortable in my own skin. I had lost balance, strength and feeling. And Physical Therapy was next.
Physical therapy, if you're lucky enough to not have had it, is something between medieval torture, and a lunch break. What the three weeks of PT did for me was twofold: I was shown the limitations that this condition created and how exercising specific muscles would prepare them for the day when the nerves would "wake up" and "reconnect." These were terms that were pretty scary to me, so I put my head down and did what I was told. My first day there, they had to put a belt around me since I was a falling risk. I couldn't stand on a mini-trampoline, and bouncing a ball was like trying to walk a tightrope. In the early sessions, just walking and trying to change directions would tip me over. Walk fast and then stop? Fall over. As the hours passed, and days, and weeks, I was finally ready to stop formal therapy sessions. My goal from the beginning was to get back on the tennis court.
When your nerves wake up, they alert you with a sharp, momentary pain. Like a pin prick. I got used to those also. Even today, I'll sometimes get a wake-up call from last summer!
I was getting better, and I still had a ways to go. It was June before I could button a shirt while I was wearing it. Prior to that, I would button it, then pull it over my head. Luckily, in my line of work, t-shirts are more the rule of the day.
Driving ability came back midway through therapy, but I would have to wait for things like the ability to walk backwards, which you wouldn't realize how many times you would do in a day until you can't. But victories along the way were pointed. My wife was fostering some kittens around this same time, and I can remember how excited I was when one of them latched on to my foot, and I could feel it's little the claws digging into my skin. Yea!
I remember tying my red Converse Chuck Taylors on the first try as a milestone. Walking around the block without stopping. A lot of progress was too small to measure except in hindsight. All of those were good things.
By August, I was mostly absent of outward symptoms. I got a call to play on a DekHockey team. I hadn't done any kind of strenuous exercise since April, but I hoped that I wasn't too out of shape to play. I went out with Joey and practiced, trying to gauge my ability. My coordination was a little off, and my conditioning--well that was awful. I hoped I could play myself, "Back into game shape."
First game. I was nervous--and on a team mostly unfamiliar with me (In DekHockey, my son's reputation as a great player probably is what gets me on a team anywhere, and I didn't want to ruin the family name.) I went out and immediately realized I was in no condition to be out there. Remember that backwards walking issue? Still there, only now I was trying to run backwards. It was a hard lesson. I was being outplayed regularly by guys 2 levels lower than when I had last played. I pulled my left Quad, and tried to finish out the game. The next day, and the second day after playing, my muscles were revolting. What didn't burn, ached, what didn't ache was unusable. I was a mess. I was mad. I wasn't ready.
I had to leave the guys on the DekHockey team for more rehab and conditioning. Two weeks after that I went back to the tennis court. I was rusty there, and the quad still gave out. But I consider myself out of the woods. Thanks to the hard word and dedication on others who care about me, I put this little episode of the Summer of '18 behind me.