My Recovery

Hey everyone, I hope your Summer is starting well. Here's another update on my recovery. The news is all good.

1. My body is getting steadily stronger. I no longer need a walker. I used a cane for a few days but don't need that either. I now walk normally. Still bump into fire hydrants but that's due to the vision thing.

My legs can now also climb stairs so nobody is safe from a visit. :)

2. During the first two months of my hospital stay I had -- in addition to an autoimmune condition (myasthenia gravis) -- something called "ICU delirium." Extremely potent drugs used to sedate me led my brain to create an alternate reality, a world as real to me as this one is for you. Unfortunately  that world was not pleasant: I interpreted ICU medical treatments (I had 9 tubes inserted) as TORTURE by an evil group trying to harm me. I reacted to that baleful threat by ripping IVs out (causing a blood clot in my arm) and fighting male attendants. Ultimately doctors put me in physical restraint and assigned a PCA to watch me 24/7. During one quasi-lucid moment I told Robin I'd forgive her if she let chthonic people kill me.

I mention this ugly episode today to happily report the delusions are gone. I perceive our shared reality the same as you and am back to being the piquant badass I was before. My cognitive ability was tested repeatedly in the hospital; one neurologist said she'd never had anyone score as high (a perfect 100) on their key diagnostic test. Thus, all future expressions coming from me are authentic and not the by-product of hallucinogenic drugs.

3. For the first three months of my hospital stay I had a feeding tube inserted into my belly. It was awful: all nutrition and medicine were delivered through it. (Myasthenia gravis affects swallowing so I couldn't accept anything orally.) I wasn't allowed to eat food during those three months which sucked enormously. You have no idea how important eating is to our emotional health. I watched meal trays get delivered to fellow patients with deep envy. For solace I made lists of ambrosia I wanted to eat in the future. That reminded me of when I was a teenager: I frequently starved myself to qualify for wrestling weight-limit classes. (Everyone wrestled at 10-20 lbs. under their normal weight.)

On May 5th I finally passed the "swallow test" during which you're X-ray-ed swallowing to make sure food goes down the right pipe. Myasthenia gravis was causing me to "aspirate" food into my lungs, a dangerous thing. Yesterday I had the feed-tube removed. Shockingly, during that process I saw the tube is over two feet long. Imagine a tube being pulled out of your belly that's two feet long. A rubber snake was inside me for five months. Geez...

4. Last note: Doctors tried two common medicines on me for myasthenia gravis but both had terrible side-effects. One accelerated my heart so fast it became life-threatening; another caused unstoppable secretions that choked me and prevented sleep. Doctors finally found a treatment that works (Solaris) which is vital because I need treatment for the rest of my life. That third treatment is delivered every two weeks by IV, which can be painful. (I once had five unsuccessful attempts to insert an IV in one hour.) 

Good news: There is a new replacement drug for Solaris called Ultomiris. Ultomiris needs to be injected only once every eight weeks. I just qualified for it by taking six vaccines to prevent deadly side-effects.

Ultomiris is advertised on TV dozens of times every day. You see those ads even if you aren't paying attention. Similarly there are ads for other myasthenia gravis meds so, if you listen, you'll hear those words spoken too. Often we don't see/hear things unless we relate to them, like when you buy a Mazda Miata and suddenly see dozens of them on the road.

A big lesson I learned from the first half of this year is the intensity of pain and discomfort people can experience from serious illness. Sympathize with those poor folks -- whom you may join someday -- because their struggle is our struggle. Nobody is immune from disease and none of us should ignore the suffering of others. Appreciate your good health; don't take it for granted; and open your heart to the less fortunate.

Aloha.