Chronic Living

For my type of Myasthenia Gravis (MuSK+), there really isn't remission. Many people with AChR+ MG can have a thymectomy, and boom, remission. Not all, certainly, but a lot. Others go into medically induced remission; they are on medication for a certain period of time, and then can back off of it and still be okay.

I HATE the word chronic. Listen (well, read!) this: Chronic: persistent, constant, continual, incessant, unabating, lingering, lasting, enduring, perpetual, eternal, permanent, ceaseless, endless.

This is where choice comes in. This is the world's definition. Although it can be true, it doesn't mean it's absolute truth. Asolute truth is that because Jesus paid the price for my sin, I will live eternally (chronically, if you will!) in heaven. And in heaven, there is no pain. No more tears. No trach. No arthritis. No diabetes. No scarred vocal cords. None of it. It will all fall away. Oh, glory, I cannot WAIT!!!

In the meantime, I struggle! I will be the first to admit it. Just yesterday, I was flippin' out because, barring God's complete healing here on earth, I have to deal with this BS disease every.single.minute.of.every.single.day. And I get angry. I get really, really ticked off. I can shake my fists and stomp my feet and hold my breath and have a good old fashioned tantrum, but it does no good. I'll still be sick. Sure, maybe I feel better for a while, and I'm not taking away from a good ol cry, because that can be very cathartic.

I'm having trouble with my trach. It's not staying in all the way, but it's not like, popping out either. It just slightly moves forward, and rubs on my natural, God-given trachea, while at the same time narrowing my airway. That doesn't feel so good. Then the outside gets all raw and irritated as well. I'm not sure how to fix it, and I don't really want to go to the doctor right now, because he'll probably just say, "It will toughen up." That's his answer for everything. Or he'll tell me I have to take it in and out more often, which at this moment in time would be excruciating. It's really hard to cause yourself pain on purpose. Seriously!

I'm having trouble with my eyes. These two syptoms, the trach and the eyes, are the two WORST. So exhausting. So draining. The pain, the double vision, headaches. Okay now it just sounds like I'm whining...I'm REALLY trying not to... My point is that if I concentrated on this every day, I would be a nutjob. (As my sister would say, bat sh!# crazy!) I have a life to live. I am a mom. I am a wife. I am a friend.

I can't be all of these things at once, and while it makes me insane, there's nothing I can do about it. Because when I try, I either end up like I am now, with double vision and completely exhausted, or worse yet, in the hospital. I just wish I could get across how difficult it is to accept limitation. Even after 10 years. Even after being almost dead more than once. Even after being in a wheelchair for a while.

Most of you didn't know me "before." Some did...but yesterday as I'm having my little melt-down, I just stopped and said, "I can't believe this is my life!" While I wouldn't trade it for ANYTHING, I still struggle. I'm human. I remember the days of freedom and independence, of productivity and doing for others. Now, that's all pretty much gone.

So....I'm going to re-read all the definitions of chronic, and apply them to love. God's love for us all is ALL of those words. And I'm going to try to have my love for others to be the same. A challenge, for sure, but it's better than applying all those "permanent" terms to my health!

If you are struggling with chronic illness, if you have found a way to accept or cope, please leave a comment or e-mail me. We need to stick together! Even if you're NOT dealing with a chronic illness... Is there something YOU'VE had to accept that has been really, really tough?

Thanks for reading! God Bless!!