This summer has been full of challenges! As I mentioned in an earlier post, Gary took a hard fall February 19. His right arm was never the same after that. He had all sorts of tests and was finally told that his lymphatic system was sending fluid to that arm, and it would take time for the swelling to go down. We invested in arm and leg wraps which made him look like he had been in a major accident. If you know Gary, I’m sure you can imagine the stories he created with that! As always, he turns a negative into a positive and makes us all laugh! 🙂
Gary has been very unstable this summer. He has taken several falls and tends to run into anything and everything. His poor arms take the brunt of this and look quite abused. Due to the medications he is on, specifically prednisone, his skin easily breaks when this happens. We take great caution and keep his wounds clean and covered. Unfortunately it wasn’t enough. On June 19th he woke unable to lift his arm. It was throbbing, and he was in great pain. Off to the emergency room where we discovered he had sepsis. They put him on 4 different IV antibiotics and took LOTS of blood. After 2 days and finishing the IV antibiotics, he was allowed to go home with two oral antibiotics. Thank goodness we caught this early! We believe the bacteria entered a wound on the top of his wrist that refused to heal. As of today, his arm looks GREAT! The swelling is down and all wounds are healed. However, we had to put off for awhile his treatment for MG due to him being on all the antibiotics and making sure he was completely free from infection. The treatment Gary takes for MG lowers his immune system. The doctors didn’t want this to happen while he was trying to get rid of an infection. However, July 6th he was given the green light to begin his Vyvgart once again. 🙂
I have a folder by the front door with Gary’s medical information in it. (doctors, medications, procedures, etc) As we walked out the door to head to the ER, I grabbed it and took it with me. I can’t tell you how many times the doctors and nurses referred to it. It also allowed me to make sure they were giving him the correct daily medication as I would check the list against what they were giving him. Several times they attempted to give him the wrong medication as it had not been taken off his medical chart they had. I highly recommend this to anyone.
Summer (heat) is very difficult for MG warriors. As Gary says, the heat makes him feel like he is in a pit of molasses unable to move and breathe. Not a problem for Gary! He simply stays in air conditioning until it cools off at night! We took some of the grandkids to the lake this past weekend. He sat in his truck with the air going and enjoyed watching the kids play, and of course he was the perfect chauffer! Indoor games and lots of movies kept everyone happy.
I did get him a new medical ID bracelet which he says is the best yet. It is from ROAD iD. Check it out!
While Gary struggles in many ways these days, he is not close to as bad as he was before diagnosis. He still has his voice and is able to swallow without choking, and he is not in his wheelchair. I purchased a large evaporative cooler that keeps him cool outside. He sits in front of it in the evenings where he continues to spoil his girls (our chickens).
Each challenge that comes up is simply an opportunity to use our brains and figure out a way to deal with it…an adventure! 😉 As Gary always reminds us….
HE IS BLESSED
i am blessed 