Inhale…Exhale…

Gary and I always say we are on the rollercoaster of life. Our ride most recently has been from the very top headed down. Do you throw your hands in the air? Scream? Laugh? Cry? Close your eyes? Hug the person in the seat next to you? I honestly think we have just about done them all! HA!

Starting back in February Gary began to decline. It was subtle at first. Most recently it has been alarming. His sugar levels have been hovering between 250 – 300, his leg muscles have become very week, keeping both eyes open has been difficult, extreme fatigue, and difficulty breathing. This past weekend he relied on his NIV (non-invasive ventilator) and slept 70% of 24 hours. We were waiting on approval for Solaris and/or IVIG and had begun to consider a visit to the ER.

I started going back and looking at my notes and calendar to see if I could figure out what changes we had made. Gary started heading downhill in February. Mid February was when he had his bad fall. Any illness or injury can cause issues with Myasthenia Gravis, so that was our focus. All this time we had been blaming the fall. However, he has recovered from that (the swelling in the arm is improving), so we couldn’t blame his symptoms on the fall anymore. After checking for other changes, I saw his new medication Azathioprine (Imuran) which he started in February. He had increased this new medication twice. This increase in medication coincided with the increase in symptoms. We made the decision to stop the Azathioprine. IT IS AMAZING THE DIFFERENCE ALREADY! He had his best day since February today! 🙂 He never needed his NIV, his sugar levels were more controlled, and he has been up and busy all day. Woo hoo!! He still has symptoms but nothing compared to what he has been dealing with. We spoke to the neuromuscular doctor today, and she is ordering another round of Vyvgart. He will continue with his mestinon and vyvgart for now.

I know we will once again hit that high spot in the roller coaster ride we are on; that’s just part of life! 🙂 We will simply continue to hold each other tight, be thankful that we are on this ride together, and never, ever forget that

WE ARE BLESSED