Thursday, March 15, 2012

More Reasons Why I Love MG

Yes, you read that correctly.  More Reasons Why I LOVE a chronic neuromuscular disease with no cure.

There truly are reasons.

First and foremost, this disease has taught me what REALLY matters in life.  I used to worry about EVERYTHING.  To the point of making myself ill.  I would worry and fret and lose sleep over things I had absolutely no control over.  Part of it was untreated anxiety and depression, but even after that was treated, I still worried.

Until I got sick, and almost died.  When you literally come back from the brink of death, what Bobbie Sue Rosepetal thought of your prom dress isn't quite as important as before.  When you almost reach the end of your life at the ripe old age of 29, "fitting in" with the "cool kids" isn't worth a hill of beans.

You know what matters?  GOD.  Getting to know him on a much more personal level and knowing without a shadow of a doubt that HE IS.  And that even if the "worst" this world has to offer happens...and I die.... I will be in heaven, for eternity, with a new body and no fears and no tears and no pain or sickness or grief.  No more hurting.  I can't see how that is a bad thing.

FAMILY.  A husband of six weeks who decides to stand by his word, his vow, and truly live in sickness or in health.  A miracle son born to a woman who in no medical way should have been able to conceive, let alone carry, a beautiful child.  Parents who stayed days at a time when I was in the hospital 150 miles away so my husband could work 4 days a week and be with me the other three.  For almost three months.

FRIENDS.  Good, real, true, friends.  The kind that are left when everyone else is tired of your illness.   The kind that you've known for 20 years, or 20 minutes.  The saddest thing was learning that "old" friends don't mean "true" friends.  But the best thing was learning that people you hardly knew at all loved you and would commit to helping you, and follow through with it.

And the second best thing about this despicable disease is the amazing people that I have met along my journey.  My friend Karen, in California, who as I write is probably getting a horrible wound cleaned and repacked, who is in insufferable pain, and yet sends ME a card thanking me for being a friend.  Karen has MG.  She had a port for treatments, and it "got lost."  It detached from where it had been surgically implanted, and she had to have more surgery to find it and reattach it.  And it got infected.  Badly.

They finally had to remove it, and she has a horrible gaping wound in her chest which is raging against her body with a terrifying infection.  And yet she still encourages others and thinks of others and is giving and the most generous woman I know.  Gracious.  Generous. A living, breathing example of how to live, despite her pain.

My sweet sistah Cindy, who is truly a sister in every way that matters.  She has MG.  She has a full time job working with addicts and helps them on their way to recovery or afterward, wherever they are in their journey.  She has the biggest heart, and is one of the most amazing women I've never met.  (I can say that for another 31 days, then I will BE with her in North Carolina!! Whoooo-Hooo!!!!)  I KNOW that I can call her in the middle of the night and say "I need to talk" and she will listen.  Really, truly listen.  And understand.  You can put a price on that.

The people I have met on this path have, 98% of the time, been wonderful and positive.  There are always a few that, know. {wink wink}

And so I am grateful I have this disease.  My life is richer because of it.  Do I have bad days?  Oh my gosh, yes.  Do I hate it sometimes?  A lot of times.   Do I cry and rant and scream and pout and complain about it?  Yup.

But OVERALL, I'd like to think that I'm more positive than negative about it.  I have MG.  And what I choose to do with that is all up to me.  I could spit in God's face and rail at the heavens shaking my fists. (And I probably have.)

Or I can get up every time I fall and take His hand, and soldier on.  I can take what I've been given, and use it to help other people, to motivate, or encourage, or whatever I can do to help other people's lives be just a little bit better.  Even if only for a moment.


missy said...

Beautiful! This sums up the ONLY reasons I love MG.

missy said...

Beautiful! This sums up the ONLY reasons I love MG.

Rachel said...

You've pretty much said it all!

I don't have a husband to help me along the way, but I've been blessed with an awesome sister, I don't know how I'd manage without her...I too have been lucky to "meet" some great people...I hope I get the chance to eventually meet some in person, God willing!

Anne said...

You have a wonderful attitude about your illness and life in general and I admire you for that. As they say, there is always a silver lining around a rain cloud.

Stopping by from SITS!

KC said...

I love your inspiring and positive outlook on a bad situation. I fear I wouldn't be as strong as you.

Kimberly said...

I love your attitude! And your perspective. Thank you for bringing a ray of sunshine into my day today!

Stopped by from SITS.

Joanne said...

Great encouraging post!

Anonymous said...

it shouldn't take a life changing situation to make someone appreciate what they have, I'm sorry you had to go through that but I'm happy you found a positive outlook on the life around you. happy sits day!

Jester Queen said...

Happy SITS day- what a fantastic attitude.

Anonymous said...

Love this article. When we are faced with any type of adversity, for those of us who are lucky, we realize what really matters. I am so glad you have found this gift through the adversity you have faced. you are a beautiful soul.
Happy SITS day!

misssrobin said...

Love this. Whatever it is that's wrong with me, I wouldn't give it up. I have learned and grown so much through it. It's helped me to become someone who can reach out to others who struggle.

I have days when I want to be in charge of my life and do all the things I dreamed of. I cry a lot. Then I get back on the path He is helping me discover. He knows what I can be better than I do. My trust in Him and His plan is what keeps me going.

Zeemaid Zeemaid said...

That's awesome!

Stopping by from SI!TS

Zeemaid Zeemaid said...

That's awesome!

Stopping by from SI!TS

doseofreality said...

Coming over from SITS. What an incredible post! I am in awe of your attitude, we could all take a lesson from your playbook! :) said...

You are an inspiration! Visiting from SITS. Enjoy your day!

Style Mentor™ said...

So gorgeous and beautiful when a bright light can shine in such darkness. All glory to God. xo
Stopping by from SITS.

Morgan said...

A beautiful testimony of God's love! In the midst of hard stuff!

Thanks for sharing your positive and refreshing perspective!

Visiting from SITS :)

Aly ~ Cooking in Stilettos said...

What a beautiful post! You have such a positive outlook - kudos!


Nicole Buckingham said...

I gained perspective through your perspective. Thank You.

Happy SITS Day to ya!!!


Carlo Powe-Crawford said...
This comment has been removed by the author.
Carlo Powe-Crawford said...

Everything that you've said chronicles just why I believe God is using you in the way that He is. And it's absolutely wonderful!

What a true inspiration and blessing you are. I am so glad that I have had the chance to eMeet you, really.

My stupid chronic illness is just annoying most days, with a few... "I can't take this, dammit" days every now and then. I have AS (Anklyosing Spondilytis). It took YEARS to get diagnosed; they couldn't catch it a lot of the time to be able to diagnose it. And... they NEVER, ever suspected that this would be what was plaguing me because AS typically is a disease that white males are diagnosed with. I'm an African-American-Welch-Choctaw Indian female. Go figure.

I remember a young Indian doctor one time practically reaming me - telling me, "There's no way that you have AS. I have AS and I ought to know!", he said. But the test results don't lie. I'm a genetic carrier, so says the HLA-B27 blood culture (test). My body tells me so.

I know that you know what I mean when I say, I KNEW that SOMETHING was wrong. I went through my 20's, 30's, and part of my 40's not knowing what exactly was wrong. It got to the point that to feel yucky was (and is even today) normal. But, it is what it is. "Sins of the father passed down to the 3rd and 4th generation... " So some stuff I guess is inevitable. I'm just glad that I've been taught Biblical principle about generational curses (If I remember correctly, I think it's explained in the book of Mark) so that I understand it.

But like you said, one day we'll be with what I call my "real dad", God. And we'll feel no pain, thank you Lord.

I'll keep you in my prayers. And again, I am SO glad that I was fortunate to meet you. You just keep on keeping on because... you're amazing!

Be encouraged always. May God continue to bless you and keep you,
- Carlo

Question (if you don't mind me asking): Are you the only member of your family who has received the diagnosis of MG? I found out almost 2 years ago that one of my cousins, a female as well, also has AS (she's on permanent disability as a result, I'm not).