March with its crazy weather patterns is much like myasthenia gravis. One day (hour) Gary is doing fine, the next he is struggling to walk or breathe! We have certainly learned to ride the changes! 🙂
March 1st we had a WONDERFUL visit with our granddaughter Amirah. Back in December she and I said we would try out a new eating place once a month. This month – Lazy Dog. Although they had the air conditioner set on blizzard, the food was great and the company even better! 🙂
Gary ended his round of Vyvgart on March 3rd. We have learned to keep the day of and the day after open as this infusion takes a lot out of him, and makes him very tired. Vyvgart is what is allowing him to talk, swallow, and somewhat function on a daily basis. 🙂
March 7th we decided to head out to Galveston for Spring Break with the grands. Remember symptoms varying from hour to hour? We learned quickly as we attempted to drive to Galveston with the RV in tow that Gary is unable now to see at night. Turn around, good nights rest, and we were off again on the 8th! 🚙😊 Of course, a Galveston trip isn’t complete without visiting Moody Gardens. 😉 This was the first time since diagnosis Gary was able to participate in EVERYTHING thanks to his cool ride.
After Moody Gardens we took a stroll down the strand. It is NOT handicap friendly at all EXCEPT for LaKing’s Confectionary and Ice Cream Parlour. HUGE SHOUT OUT to this WONDERFUL store. If you are ever in Galveston, you MUST visit. The candy and ice cream is the best as are the people. They actually had a lift for Gary’s chair to get him up the steps and into the store. ❤
We returned to reality on the 12th with a visit to the cardiologist. Gary had gained 12 pounds in water weight and the increase in his Bumex was not doing the trick; he was having great difficulty breathing. The doctor prescribed him metolazone in addition to what he was already taking and told me if it did not work to be prepared to take him to St. Lukes for IV diuretics. Oh the excitement when he stepped on the scale the next day! 🎉He continued to loose a total of 15 pounds of water weight and as of this writing has maintained that loss! Woo Hoo!
Remember the horrible winds we had the weekend of the 14th? We figured that was the cause of Gary’s increase in sore throat, drainage, and cough. I took him to our PCP on the 20th who did x-rays. Upon seeing those results she sent him to the ER where he was diagnosed with pneumonia. Needless to say, this was a scary time filled with breathing treatments, medications, and LOTS of sleep. As of today he is doing MUCH better. 🙂
I listen to the same ol station on Pandora when in my car – it’s a country station. While Gary was battling pneumonia, I had taken Malik to work. On the way home I turned up the radio and thought how very interesting to hear religious music playing on a country station.
Another religious song came on after that…
My Pandora station had somehow changed! Do you believe in God winks? I do! No doubt he was sending me a message that morning. Sometimes as caregivers we get so caught up in giving, we forget to take time to fill up. What a blessing God reminded me that morning!
I’ve said it before and I’ll say it again – I don’t know what the future holds, but I have no doubt God will be with us every step of the way. Not a day goes by that Gary and I don’t count our blessings: great doctors, wonderful friends and family, and each other. ❤
As Gary always says…
I AM BLESSSED
i am blessed 