June…The Month of MG Warriors

I’m blessed to have my favorite MG Warrior beside me every day. I’m amazed at his daily positive attitude and will to fight all the things this disease has thrown at him. Just when we think we see the light, a cloud appears. However, what do you get with clouds? Coolness, sometimes rain and rainbows. There is positive in everything if we just take the time to open our heart and eyes and look.

Gary had his first Vyvgart treatment in 8 weeks. He had been waiting for approval for Solaris, but after taking time to think about it, he decided he wanted to continue on Vyvgart. He still has difficulty breathing upon exertion and tires easily. His eyes continue to give him fits. He describes his body as molasses. He says lifting his arms and legs feel like lifting a heavy blob. Today we tried out a new restaurant. He had difficulty holding his spoon to eat. He said it was difficult to control his arm and ended up having to hold the spoon like a toddler. I see him look at me for approval, and I simply smile and say, “no big deal”. I know it is hard on him, a grown man who has always taken care not only of himself but me and everything else to have lost control on so many levels. You know what he hasn’t lost control of…..his wonderful attitude and his faith. There is no doubt God is by our sides walking this journey with us.

We both feel there is some improvement since the infusion and look forward to more. Today he saw his cardiologist who is investigating his swelling. Prednisone along with his other medications play a part no doubt; however, he is sending Gary for further testing. More to come on that later. We did make the decision that the cane is no longer enough and will begin taking his “portable chair” (walker) with us from now on. This will allow him to take breaks as he walks down hallways, etc. Of course I will have to monitor his speed limit and wheelies as we are out and about! He loves to show off!! HA!

Since stopping the Imuran his sugar levels have improved. While not perfect, they are manageable, and we have no doubt they will continue to improve. He is still taking one long lasting insulin shot, another insulin shot before each meal, and Januvia.

His skin remains thin and easily tears and bruises. (A lovely gift curtesy of Prednisone) He ran into a door at the doctor’s office on the way to the car today. I held my breath and looked for blood…a sigh of relief when there wasn’t any. He started laughing and commented that he will have nice colors pop up there soon. Love his attitude!! ❤

Current symptoms: muscle weakness, breathing difficulties, sometimes speech and swallowing, swelling, eye weakness

The positive: He is home, working, smiling, happy….. he doesn’t have any infections, and he is loving life.

June is Myasthenia Gravis Awareness Month. MG is known as the snowflake disease as it affects everyone differently. It can be difficult to diagnose. We went two years going from doctor to doctor looking for answers. Rest is huge and can help lesson symptoms which can fluctuate day to day/hour to hour. There currently is not a cure, but there are medications to manage symptoms. I have learned how important it is to keep records of EVERYTHING. I have a binder that contains his medications, doctors, tests, surgeries, etc. I also keep a folder by the front door with his medications/doctors in case of emergency. He also has a medical id bracelet, and we have a pocket folder with his basic information located on his seatbelt in his truck. We have also learned to question and research, and we certainly haven’t been afraid to fire doctors! HA! With that said, we currently have a WONDERFUL team of doctors. 🙂 Myasthenia Gravis may think it has control of Gary, but we know better. As I’ve said before, we have an awesome God, and we trust in Him. There is no doubt…

WE ARE BLESSED