That week without Mestinon was tough on me. It was also educational. I was able to see and feel what got worse without Mestinon. My eyes, mouth, nose, etc. got drier. Painfully dry. It was harder to see, my mouth stuck to itself, my lips kept getting stuck on my teeth and it was really gross to wake up with thick secretions in my throat. I got green boogers that were hard to blow out of my nose. And apparently the lack of moisture also affects the intestines.
On a good day, I have to take Miralax twice and down 3 stool softeners, thanks to my diverticulitis, colon to organ fistulas and humongous incisional hernia. Without Mestinon, my guts quit working. I was having pretty intense diverticulitis pain from that. I got so desperate that I took a laxative pill. That didn’t even work.
Yesterday I felt great relief to breathe easier again, thanks to Mestinon helping my diaphragm muscles to work. And my eye muscles got stronger and I could open my eyes more fully 🙂 I slept better and woke up without rib pain! Ahhhhhhhh…….
This morning I vacuumed and cleaned with only minimal shortness of breath. I loaded and unloaded the dishwasher and it didn’t feel like I was risking my life to bend and stretch. Then I got instantly tired and took a 4 hour nap. I woke up with a feeling of well-being. I easily rolled over to turn off the oxygen and CPAP and I got out of bed without a big production. It was great! 🙂
The downside has been the gut distress that new users of Mestinon complain about. I haven’t been hungry. I didn’t eat supper, I didn’t have breakfast. Then I could feel my meds were not doing well on an empty stomach so I grilled and buttered an English muffin. Then I felt OK again. But……after my nap, it was time for more Mestinon. I didn’t give it a second thought. Whoa! My stomach must have been very empty by then. The Mestinon hit and I felt sooooooooo queasy! Just like a newbie to the stuff, I had to fly to the bathroom. It causes instant diarrhea.
Well, I have newfound empathy for the newly diagnosed MG patient who starts on Mestinon and inevitably complains about the gut distress. I have it. I had forgotten what it was like. Gee, I wanted my intestines to work again….and now they are. What am I complaining about? :-p That’s a good reminder to always eat some crackers or something along with my meds. Ugh. Lesson relearned…I hope 🙂
Oooooooohhhhhhhh…..the sky has that creepy yellow light from a storm. Part of the sky is black, the rest yellow. It seems that every day in the news, they are showing yet another funnel cloud here in Utah. As this weather goes east, it only gets worse. Yikes!
Well, the good news is me. I just made tonight’s video and surprised even myself 🙂
If you are ever curious to see what I have been through in chronological order….or are really bored, here’s where to find all my videos. I hope they can help people who might have MG, or even those folks struggling with other chronic illnesses who sometimes feel hopeless. I am living proof that you never know what’s next…..so just keep going.