My body doesn't like to do anything anymore. Just last night was my cousin's graduation party. I wanted to go, and I rested up this week to prepare for that... though I also rested because after the MG walk Sunday my body got worse. Yesterday, I knew I shouldn't go to the party. I even heard that little voice in my head saying don't go. Even in the car ride on the way there, the voice again saying you shouldn't be going but since you are I'll help you get through it. That voice must be God because I've been hearing it more and more. If I would just listen I'm sure my life would be a lot easier. Discerning what is a message from God and what is my own stubborn will is difficult. Anyways, I went to the party and immediately it was a lot to handle. There were a lot of people there and I haven't seen many of them in years so I had to say hi to everyone and that was exhausting by itself... then came the "you look fine" and so having to explain that too.
So I make my way to the basement, where my immediate family usually hangs out. I was already feeling weak so I just sat, but should say laid there. MG got my face. It was hard to smile, hard to talk, hard to chew, hard to swallow, hard to keep my head up. When people look at me, if you don't know otherwise, it would look like I'm either depressed, totally don't want to be there, lazy or all of the above. But I'm none of those. I'm an MG patient whose body doesn't cooperate.
I hate feeling like my mom is made into a servant but once again that's what it felt like because she was bringing me water and food and making sure I was ok. Well when more and more people started coming down, it became too much. The sensory overload issue was getting out of control. Every sight, sound, motion was blasting at my brain at once. Other MGers get this yet no doctor seems to know about it or even really believe it. I removed myself from the room and once I got in the bathroom alone with the door shut, everything got better. I decided it was time to leave, not even an hour after arriving. <sad face> So I asked my mom to drive me home and heard in the background my dad saying that was probably a good idea. I wanted to believe I could do it, but I guess parties are out of the question for me right now.
So even that occurrence aside, my MG has been worse lately. Because of this there is much talk about starting me on an immune suppressant- a very powerful medication that basically turns off your immune system and has a lot of side effects. The one they want to give me is called Imuran and is used a lot for transplant patients so not to reject the transplant. I've turned this option down for a while now because of all the risks associated with it. And you have to get frequent blood tests with this too because how it is toxic and can harm your kidneys and liver. You think I have to be careful now to not be around sick people- well without an immune system every little cough or sneeze has the risk of landing me in the hospital. My biggest concern with that is while having the pulmonary embolism and being on blood thinners... if I land in the hospital I now have 3 or more complications going on at once... MG, PE and whatever I would land in the hospital for. And any time you get sick with MG it makes the MG much worse. And then the acute treatment for MG, plasmapheresis, is not safe to do with me while on blood thinners. See how this becomes a problem? I wanted to at least wait until off the blood thinners but that is another 4 months or so. Can I do it? Probably, but not without a quality of life decline. It's a tough decision to make here. On top of that, Imuran can take months to start helping. So even if I start it now, I won't see any improvement until a while later, if it does help... again never a guarantee. Just like surgery.
And so, I watch a lot of movies, do a lot of research, attempt to read but my arms get tired holding the book, started a puzzle in which I can pretty much work at it for like 5 minutes at a time. On the way home from the doctor yesterday I said to my mom I hope some day I can go for a walk again and play basketball again. I really miss sports. She asked if I even knew what normal was anymore. I thought about it and my answer is no. I really don't. It's been over 3 years since I first got sick and I can't remember what my body was like before that. All I know is it was a whole heck of a lot easier to do everything and I didn't have to think twice about what I was doing. Again goes back to appreciation/value for what you have while you have it. Because at that moment I thought I need to appreciate/value that it hasn't affected my face like many people... and what happened last night? It affected my face.
Anyways... my INR finally got to 2.0. Need it between 2-3 and 3 weeks ago it was 3.9 so they adjusted my dose and it fell to 1.5, adjusted my dose and again 1.5. Finally we got it. But now they don't want to test again for 2 weeks! That concerns me because I'm on a much higher dose right now and the checks have been weekly. I'd rather go more often than not enough. At least I have a follow up doctor visit in a week so maybe I can talk him into checking or at least talk to him about my concerns.
I know something that would make me better. I really do. And yet I can't have it, at least not right now. I bet those who really know me know that answer. Please pray for it. Thank you!
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