I’m back in the hospital after yet another Myasthenia “crisis” and not feeling like myself is a good way to describe it. It’s my fourth day here and everyday starts the same way. I’m at a teaching hospital so when the doctor makes his rounds he is followed by a bunch of other doctors and folks. They ask the same questions. What is your name? Where are you at? Who is President? Then it’s followed by follow my finger, squeeze my hands and a bunch of other tests that show my muscle strength. Most of them are so simple but someone with Myasthenia Gravis having issues can’t continue the movements or coordinate the movements. When I came in the ER I could not speak or move. I blinked to respond to questions in the ER. My mind was on point but my body was not! Slowly but surely over the course of these four days my body is coming back into the game thanks to the help of a treatment called Plasmaphoresis. It’s a process that comes with some rough step prior to getting it. The first step is a Plasmaphoresis catheter – it goes in the neck. It’s lovely tubes that stick out of my neck and to get it put in is not fun. I have had to go down to IR or Interventional Radiology where they insert this hard catheter and sew it in place. Have you wiggled yet? Well that’s the last thing you can do when they are putting it in. I told my mom I could have made a diamond out of a charcoal brickette! Whew! I was glad when it was over and me in my best southern fashion hollered “Thank you” as they wheeled me away. Really? Thank you for stabbing me in the neck? These folks probably think I’m crazy! Who isn’t nowadays?
So now that I have my lovely neck jewelry I’m good except for the tip of the catheter is too close to my heart and sends my heart rate over 160 for 30 minutes twice! The only thing that I was disappointed in was the fact I didn’t have my Fitbit on so it would think I was exercising like a mad woman and one up my co-workers! Hahahaha! I did feel like poop after it was over but I knew I would be fine. To resolve this issue I had to have a surgeon come in and cut the stitches, pull the catheter back and restitch it. As my brother likes to tell anyone who will listen I’m “mean” so I did it without any numbing medicine. Yet another moment I could have had a diamond!
The Plasmaphoresis is a very interesting process. The catheter has two tubes one for outgoing and one for incoming. The process involves a machine that is similar to dialysis but it draws the blood off, spins it down, takes the plasma off, adds new plasma and puts it back. All I have to do is sit there and run my mouth which comes so naturally for me. Sandy is my Plasmaphoresis nurse and we are so much alike. We laugh and talk and talk and laugh. The 120 minutes of treatment fly by. Afterwards on the other hand my body rebels with nausea and chills. It’s not fun but once it passes I feel like a new woman. Today the doctors came by immediately after Plasmaphoresis and decided they would come back. It was then my quick wit jumped into play and I told them my name was Jane Doe right now. They all laughed. I told them they could come when Melynda was back. Yeah, they think I’m crazy but that’s ok, they laugh at my jokes!
Myasthenia Gravis has taken over my life these past 4 months and run rampant with every aspect of it, except one. I don’t care what I have going on physically or mentally because I know spiritually Jesus Christ knows my name and has a place waiting for me when this earthly life is over. It doesn’t matter if it is tonight, next month or 50 years from now I’m not going down without a fight and a Hallelujah! Today after my nausea subsided I went to my personal prayer closet (aka bathroom) and prayed. A simple prayer actually, one that thanked God for my caregivers, thanked Him for his mercy & grace and praised Him for being my beginning and my end. When it comes down to it I know where I’m going and I know my name will not be Jane Doe when I get there. I will be child of the Most High! I will be praising The King of Kings and Lord of Lords but until then I am a weary soldier on a journey. A journey God will continue to hold my hand through. I am grateful I am gaining strength each day and things seem to be working. My prayer is that they continue to improve and the most effective treatment is found. It doesn’t matter what I have to go through here on this earth; it’s knowing where I will be for eternity that gives me peace.
Thank you again for all the prayers and get well wishes they mean more that words can express. I’m sorry if I have missed your calls or texts but there has been a lot going on this trip. I’ve tried to keep up with everything but haven’t always succeeded.
Thanks again! ~Melynda