Life is Good

If I had a nickel for every time I said I was going to do better about posting, I’d be a rich girl! HA! In all honesty time seems to go faster these days.

August 11 was the start of Methotrexate. Since then the only negative side effect we have noticed is severe muscle/bone pain. This is being treated with a dose of Tramadol before bedtime. During the day he is relying on Tylenol which seems to take the edge off the pain for now. He is now up to 20mg once a week which after this weeks blood work, will probably be raised again. We really aren’t seeing any improvements in the MG since beginning this; however, we have read it can take up to 6 -10 months to begin to feel changes. We still have faith this will be the drug that works. 🙂

We added another doctor to our team – a kidney doctor. This was needed due to the amount of water pills Gary takes due to his heart. His cardiologist wanted to make sure his kidneys were working fine. We did discover he had CKD 3a which is not worrisome at his age. The doctor said he believes in the 3Ps – prevent, prevent, prevent! Love it!! Consequently another medication has been added to his list along with being told to continue the supplements he is already taking.

We did early voting the first week it was available. Since we expected a long line, we took his traveling chair (walker). They were wonderful there asking if he would like to go to the front of the line. He smiled that wonderful smile and said he would happily wait in line with everyone else. ❤ They had several voting booths for people who needed to sit to vote. He was sent to one of them and was able to sit on his portable chair and get the job done. Isn’t life wonderful?

Gary loves to get out and about. Our favorite things to do these days are find new and unique coffee shops, and of course restaurants where we split a meal. It’s the simple things that make life wonderful.

We did end up getting the rv from the lake and putting it in storage. The stairs had become too difficult to manage for Gary. We will decide what the next step will be after the holidays. Not sure what that will be just yet, but have no doubt it will be wonderful! For now, when we make trips, we will stay in handicap hotel rooms. 🙂

Current symptoms: Right eye traveling to the center of nose, and closing by end of day, double vision, muscle weakness, difficulty breathing with exertion, and difficulty holding his head up. He actually does great from the time he wakes until about 3 or 4 in the afternoon. After that, he tends to crash. We have also learned he needs a day of rest after going out and about for work.

Medications have remained the same.

If he is going a short distance – say the car to a restaurant, he will use his cane. For longer distances he uses his traveling chair or wheel chair depending on how long he will be out.

Gary was diagnosed in 2020 with myasthenia gravis. Here it is 2024 and we still have not found the magic potion to help with his symptoms. I think 2025 will be his year. 😉 In the meantime, he has let MG know he is still in control and continues to live life to the fullest. He loves his work and loves spending time with family. I love going out and about with him and see him interact with people. He brings sunshine to all he encounters. ❤

When asked how he is doing, Gary always replies…

I AM BLESSED