I looked at the last time I posted, and it was March!! My goodness, where does the time go?? I’ve never waited so long to update. I always think about it, but then figure I’ll wait until we get some answers… sigh…I should know by now with myasthenia gravis, those answers, much like the questions, are ever changing! I am getting better (I think) at keeping the Tic Toc/Instagram/FB updated! 🙂 Gary is really enjoying that! In fact, he purchased a fancy phone holder so we could better take videos/pictures. So far we’ve practiced with it once! HA! We’ll get there and be pros before you know it! 😉
We are still on the rollercoaster ride with this disease, and have settled into realization that this is simply the new normal. Sometime back you may recall that Gary’s neurologist said we are out of options; however, there are new medications still being researched. He is now doing plasmapheresis once a week down at Methodist Med Center. It hasn’t had the results we had hoped; however, it allows him to swallow, talk, and chew. He loves the fact that he is not putting “harsh chemicals” in his body anymore. He is having great difficulty with balance and muscle weakness. There are really good days and days he needs to sleep all day – remember the rollercoaster ride? When I read this back to myself, it sounds gloomy. I will be honest – at times it is awful. However, we focus on the journey of life and feel so blessed to have each other, wonderful doctors, and great friends who have stuck by us. ❤ If you know Gary at all, you know that all the “issues” he has to deal with is just material for him to use to make us laugh – and that he does! 🙂
He is having difficulty with pain from his back into his legs. The PCP gave him Gabapentin which really didn’t work. Sleeping in a bed became very difficult, so we purchased a love seat recliner. BIG DIFFERENCE. He is able to adjust it for comfort. We also added turmeric/ginger tea every evening which I add honey and lemon to, and he is taking apple cider vinegar. The pain has virtually gone away! He still knows it is there, yet he is able to function/sleep again. ❤
I’m still trying to figure out what is out there that can take the place of the dreaded prednisone – so far, not much luck; however, I believe we will figure that out one day too! 🙂
Yes, Gary has MG. Yes, it has changed our lives drastically. But…you know what? It’s only MG. What is mightier than MG? Our God. And HE shows us daily just how blessed we are. SO MANY things to be thankful for. ❤
From the beginning Gary has always said…
I AM BLESSED
i am blessed 