Friday, December 11, 2009

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!!

26 comments:

SB said...

Thanks so much for stopping by, Kerri! I'm looking forward to following your blog, and I'll be praying for you!

Young Wife said...

Thanks for the reminder that God's love is perpetual, and that one day we will live chronically in heaven. I really needed to read this today. David told me last night he's hurting, and he's afraid he's going to flare. :( The trach sounds miserable. I just said a prayer for you.

Beverly said...

You have a great attitude...give it to God. You have a right to complain and have a tantrum every now and then...God Bless Ya Girl

Christy said...

Hi, what an honest and moving post. I too have said a prayer for you. I know I need to be reminded of God's love also. thank you for stopping by my blog - I hope the cookies turned out - they are my new favorites!

The Mumpowers said...

You have such a wonderful attitude about everything. You'll be in my prayers. Oh, and happy SITS Saturday Sharefest. :) God Bless.

AmberRay said...

Thank you so much for your comment. This is a new disease that I will have to learn about. I am glad you have faith in God and Jesus to get you through. God bless you.

Serendipity said...

Hi Kerri, I don't have MG but have been battling with a newly diagnosed chronic illness for the past year. I can totally identify with the "is this really my life?!" moment - I've had a few of those! Sending you hugs and as much positivity I can muster :)

Toni said...

*hug*
My mother was ill a great deal of my life and she always found her peace in Christ. The body is weak but our Lord is the ultimate strength.

I am so sorry you have this pain, but I am so happy that you have and know God. :)

Also, Happy SITS Saturday Sharefest!!

http://carrigansjoy.blogspot.com/

Somewhere In Between said...

I admire your honesty. I hope you have a wonderful weekend!

Happy SITS Saturday Sharefest!

Serendipity said...

I first read this post in December and I still think it's a brilliant description of life with a chronic illness. I hope you are enjoying your FB day!

Karen & Gerard Zemek said...

[A big hug for you.] It would be so difficult to have a chronic illness--I can hardly stand having a cold for a week!

Congrats on your SITS day!

mub said...

I hope this doesn't come across the wrong way because it's meant to be a compliment! I appreciate so much that you can come forward and just say how much it sucks to be sick sometimes! It feels like when people ask how you're doing, they don't -really- want to know and you're supposed to put on a brave face and say everything is alright even when it isn't.

I love that you turned "chronic" into having a good feeling instead of such a hopeless one.

Melissa Papaj Photography said...

Happy SITS day! In response to your entry...I have been sick since June 2009 with something that the doctors don't even know what it is yet...I have several symptoms of several illnesses but nothing that equals anything...sometimes it is horrible not knowing what it is because I am worried that it is something if left untreated is getting worse, but at the same time, it's nice that I don't know because it could be something awful and I try to not even think about it or accept that I have "something" wrong with me because in a way I feel like I am "giving in" to it - like it has won. Does that make any sense? So, I think the way I have found to cope is to just forget about it...no I cannot forget about the symptoms and I am still learning to live with those everyday, but if I don't acknowledge "it" then I find it is easier for me to accept. I know it doesn't work for everyone, but that has been my way to cope for now :) You are an inspiration to me. God Bless...

Sandy said...

My hats off to you for being able to focus your energy on the positive things, like God's chronic love! I am not sure that I could be that strong! (((hugs)))

Brenda said...

Hi, Kerri! Happy SITS day! It's so nice to meet you. Listen, when you live with a chronic condition, it is you're right to NOT like it! So unload, SISTA!

I'll share with you what I know about chronic. My son has autism. And it never goes away. Autism does not take a vacation. Unfamiliar places and people and schedule actually makes my son even more anxious. So while I would love to take a vacation, it would be NO fun. And autism doesn't take any sick days. So when Mommy's sick or when Jack is sick, autism is still there and we still have to keep going.

But you know all about that. ((hugs)) And it is a real pleasure.

LisaDay said...

Sometimes having a doctor say 'I know you are hurting and I am sorry, let's see if we can do anything' works wonders.

Happy SITS day.

LisaDay

Tanya said...

WOW! I think you deal with it amazingly. I have never had experience with this in my life, so no comparison. But just wanted to say, you handle it well. And that trach sounds so horrible, sorry you have to deal with that :-( Thanks for reminding us about God's love!

Happy SITS Day!

Tanya

italianmamachef said...

Thanks for sharing of your struggles. My hubby has fibromyalgia and I was diagnosed with a mild form of bipolar disorder 5 years ago. This combination at my home makes for interesting happenings. It's a struggle and one I look to the Lord for strength to deal with daily. Some days are good, some not so good.
I'm sorry you have to deal with the trach issue. But I am so glad you are alive and are here for your loved ones. Keep the faith.

Single Mama NYC said...

God has blessed you with so much. Your strength, your family and your faith are great blessings. You are an inspiration!

CoconutPalmDesigns said...

My prayers are with you that you find the strength each day to just live that day to it's fullest. And as you say, not live, LIVE.

Happy SITS Day!

Cheers :-)
- CoconutPalmDesigns

Elizabeth Patch said...

My sister lives with post-cancer chronic illness, and her faith in God, like yours, carries her through. You are an inspiration, and may you be blessed with healing, exactly when you need it the most.

LindaFaye said...

Thanks for putting it all out there for us to read. I appreciate your details about symptoms that are hard simply because that brings it into harsh reality what you are dealing with. And I am so glad to hear that you come full circle to choosing something other than self pity. It's amazing. You're amazing. I look forward to meeting you at some point of our chronic life. I'm sure we'll bump into each other some time while we're chronically singing to Jesus. Right on!

Tsquared417 said...

Perfectly said and I don't think that counts as whining!!

Marie said...

I don't consider you whining at all....Most of us can't relate to your chronic pain, I mean my back is out right now and the simplest things are sooo hard to do it makes me crazy, so I can't even imagine how you deal with it all...

Eos Mom said...

Hi, I came over from TipJunkie and started poking around. I have a chronic illness (IBS-D) and though it's not as serious as yours, I could relate to so much of what you wrote here. I didn't develop symptoms till in my 20s, so I often remember the good old days when I was a normal person and often ask "how did this become my life?" I'm a mom now, so there isn't a lot of time for sitting on my butt, I have to keep on going, but I struggle a lot with depression.... Anyway, I don't need to write a book here, just wanted to say hi and thanks for writing a blog about chronic illness! Best wishes!!!

Conscious Dreamer said...

Really love what your doing here. I have lived with chronic illness and want to educate people and help them with my blog as well as trying to remember how much progress i've had as well as you'll know some days it seems impossible not to feel sorry for yourself or completely freak out. Found your writing style humerous and enjoyable chin up and keep on trucking i'm sure what your doing is a big help to those around you. Much love.