The following is the second half of Valerie’s personal MG story, written in her own words.
If you missed the first half, you can read it here.
I’m home. And bored. I have a few friends who keep me company after school. But even they start to fade. Is this what my life is going to be like? I think I’d rather die than deal with the mocking, the teasing, the bullies. It’s all too much. Basketball was my outlet. Now I don’t even have that. I’m going to play in the last game. I have instructions to only play in the last two minutes of the game. No three pointers, no falling on the ground scrambling for loose balls. Be careful of your chest. It’s only been three weeks since my surgery. Heh, yeah right. Second quarter I’m in. Shooting threes, on the ground getting the ball. Throwing to teammates. Catching passes. Hey! I can see! Oh there’s the recruiter! We may have lost that game. But I didn’t lose that game. I finished strong. And I survived. I have open try outs with the high school in the spring. Better get it together so I can play!
Three weeks later I’m back at the hospital for multiple follow ups. Shhh, don’t tell the doctors I played basketball!! “You’re still not doing as well as I’d hoped. Let’s increase your mestinon and prednisone.” What? More moods, more moon faces, I’m always hungry and thirsty. And you’re saying what?
High school. Not fun when you’re different and people don’t want to talk to you because you look funny. You can’t talk. You can’t hold your head up. You’re always missing school. I have a couple friends who I played softball with over the summer. They understood my condition. Thank you for still being there.
Before I go any further with what I had to endure throughout my high school career, or lack of, let’s talk about Myasthenia Gravis. MG for short. MG is a neuromuscular disease that’s autoimmune. Meaning, someone with an autoimmune disease suffers from their body attacking itself. In a case of MG, the muscles are considered the bad guy. The brain will send signals to the nerves to finish with muscle activation. However, it doesn’t get there. There’s a block from the brain to the nerves to the muscles. Antibodies are produced and start attacking the muscles. In turn, the muscles become weak from the attack. MG is not curable and it should not be fatal (however, recently I’m beginning to think the opposite). It is treatable with medication and expensive and sometimes invasive treatments. There are medicines to help the acetylcholine to stay put at the neuromuscular junction. Think that’s an mouthful? Try explaining it constantly! Then you have the immunosuppressants. I’m taking mestinon to keep the acetylcholine in check and imuran to keep my immune system suppressed in high school. Then you have the steroids to help calm the inflammation down within the body. Add that to my mix of meds. Then you have plasmapheresis. A procedure that takes your blood out of your system via tubes, placed in a centrifuge, cleaned out and then placed back into your body. Well, what happens when the blood is out of your body? You have saline solution replacement, which is taken out once your blood is returned. The plasma is cleaned out of your blood and put in a bag. The plasma can be light or dark. Often resembling chicken gravy. At least to me. Then you have IVIg. Intravenous Immunoglobulin therapy. I’ve never had it, but it essentially replaces the Ig that you are lacking. Thus making you a little stronger.
Back to high school. I started plasmapheresis when my doctor realized that I was near a crisis. Well, what’s a crisis? Basically your body quits on you. You are so weak you can’t breath, talk, swallow, move, nothing. You can go into a respiratory failure. I’ve never experienced one thankfully, but I know people who have. I missed half of the first two years of high school because of the disease. I was in the the hospital getting plasmapheresis. I would spend almost a week every other month in the hospital getting the treatment. I would get it three times a week and feel so much better. Eventually it was determined that the prednisone was not working for me and I was starting to develop long term side effects from the drug. So we slowly weened off it. Eventually I was mestinon and imuran with plasmapheresis.
Remember my basketball dream? Throw that out the window. I missed the most important years to make a name for myself with basketball. What to do now? At this point I was finally seeing the effects of my surgery. The medicine was finally working and I was starting to look normal. Imagine that! Three hellish years. My appointments were less often. I was able to cut back on the mestinon. Life was starting to make sense!
Fast forward to age 20. Second to last appointment. I’m finally showing signs of remission. I can start cutting back on the imuran. Next appointment will be a year from then and I should be off completely.
Fast forward to age 21. “Meet your new (non pediatric) neurologist should you have any problems. You’ve graduated from us! Call if you need anything.”
Went on to graduate college, went and got my masters in athletic training. Things were finally looking up. Until December 2011. My dog passed away and I wasn’t home to be with him. He was a rescue. My baby. That set everything off again for me. Droopy eyes and double vision to start. Immediately made an appointment to get a referral to see a neurologist. Been there done that. Don’t want to do it again.
But now my MG is different. It’s no longer ocular and facial weakness. It’s total body. I now have general myasthenia gravis. This is completely new to me. I have great days, decent days and horrible days. My breathing has been affected by this. My chewing and my swallowing. I feel like a bowl of jello on my horrible days. A lot of times I can’t open my eyes. I see double. This isn’t good since I live alone, in a different state. Have to beat this quickly. Start on mestinon, do your blood work, then put me on imuran. No I won’t do prednisone unless I’m in a crisis. I know what works for me and what doesn’t. Let me make most of the calls here. I’ll listen to what you say, but no prednisone. I need to treat this as aggressively as possible.
So far I’m doing alright. I have my moments where I simply cannot breathe or see. But I still have to work. I struggle. But I stay safe. I have to pay my bills. I can’t move home until September. I’m 25. I have a masters. I live in Washington. I live alone. I am alone. I’m looking at plasmapheresis. How do I care for myself with this disease while living alone? This is a whole new concept for me. Will my doctor work with me? What do I do? I found friends online with the disease. Some of them passed away from complications of the disease. Remember when I said I was questioning the fatality of the disease?
Not a day goes by where I question the reason that out of five kids, why me? I had dreams that were crushed. I struggle with this disease on a daily basis. And I’m alone. My best friend doesn’t understand the process. Thinks that tomorrow I’ll be fine. I cry almost every night. All I want is someone to understand what I’m going through. And accept it. I’m terrified. I understand more and more. This disease has changed its course and it scares me because it’s progressing rapidly. I don’t take life for granted. I live each day like it’s my last. Because it could be.
Thank you so much for sharing your story, Valerie.