Wednesday, August 16, 2017

Who Signed Me Up for THIS?

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'"~ Eleanor Roosevelt

I'm sure that quote seems a bit dramatic. Especially coming from a girl who hasn't bothered to blog since May 2016! However, after a whirlwind year and a couple months, I'm back! And I'm ready to impart more thoughts that I'm SURE you've so anxiously awaited.

To recap the last year, here's a list of general life things that occurred:

  • I changed jobs and love it.
  • My oldest daughter went to college and met a boy she's been dating for close to a year now.
  • My youngest daughter learned to drive, got a car, had said car totaled in a not-at-fault accident, got another car and is now a JUNIOR in high school.
  • My son got a new, AMAZING job and moved about 30 minutes away.
  • My husband is still a saint whose business is thriving.
  • The presidential election nearly killed us all - and definitely killed some friendships despite my fervent prayers and absolute commitment to NOT discussing politics with anyone.
  • And.......the big one I will discuss further: I have a disease! Yes - a disease!!
"So, a disease," you ask? Yes. I have a disease. It seems that I have Mixed Connective Tissue Disease - which is basically the Neiman Marcus cookie of autoimmune diseases. (If you've never had an NM cookie, just think of a cookie with 14 different things mixed into the dough and baked. It's not a specific flavor. It's a combo of many flavors.)

Under the name of MCTD are a plethora of specific diseases (combos galore) that you could or could not actually have. Strangely, I've tested negative for any of them - with the possible exception of one that *might* an elevated number because of my initial "flare" with the disease, which landed in my lungs causing me major breathing problems.

This of course leads me to think that maybe I don't even HAVE MCTD. Maybe it's something else fun like Lupus. But that whole argument can be saved for another day. And I highly discourage you from Googling MCTD too much because it'll freak you out. No, really. It'll freak you out.

My point of bringing this up really has more to do with my heart than it does disclosing this lovely little health issue I now carry around. I could go on and on about my hands swelling, the misery of the steroids I've been on, and the fear involved with the drugs I am taking. I could tell you stories of every person I knowing trying to advise me on what I can or cannot eat now that I have an autoimmune disease.  I could even share some stories about the 3 days I spent in the hospital.

But I won't.

I want to talk more about what it feels like to suddenly become a "sick person." Because that's what's really been tough. (And PLEASE do not in any way think that my flippant comments along the way reflect how I feel about the seriousness for myself or anyone with MUCH scarier diagnoses. It's one of my many coping mechanisms. If I don't laugh, I'll cry.)

Yep. We busted out of the hospital on the 3rd night. 
Imagine going to the doctor with what seems like an upper respiratory issue only to land in the hospital, have scads of blood taken and then get told that you now have condition that you will live with the rest of your life. One that will possibly limit your life expectancy, affect your ability to do many things you've always taken for granted and includes treatment which will leave you feeling really, really unattractive for an indeterminate amount of time. (I know some of you know EXACTLY what I'm talking about.)

That's basically what happened to me in June. Going from having a couple "regular" doctors for aches, pains and yearly exams to having a rheumatologist and pulmonologist who both warned me that I'd hate them for putting me on steroids didn't seem like that much of jump. I thought I'd rebound, kick this stuff in the butt and keep on moving at Charee speed. I planned to show everyone exactly how recovery should look - and maybe schedule a photo shoot at the end when I looked healthy and glamorous. (Ok. Not really. I hate pictures of myself.)

Little did I know that I'd start losing hair, gaining weight and getting the lovely "moon face" that comes with prednisone use. And, more than that, I wasn't prepared for the depression that hit m
e like a ton of bricks. Reading about MCTD, researching treatment, and remembering all the pills and supplements required has become a huge part of my life the last 2 months. It's not really the way anyone wants to spend her summer, but not being able to walk across the room without stopping to rest has given me a lot of time to do those things.

And this was BEFORE the steroids. Not so fancy now.
I've found myself waking at night only to lie awake praying that I'd kick this and get it under control so that I'd live to see my grandchildren. Or worrying that I'd become a huge burden to my family if I do survive all of this. (Because I Googled....DO NOT GOOGLE. It turns even the most rational girl into a defeatist basket case!)

I've sat and wondered if my husband will ever think I'm cute again - because make no mistake, there's nothing cute about my hair, face and pudgy belly. I'm operating purely on the ol' personality these days. Suffice is to say, my personality isn't THAT good! (It just figures that we are celebrating our 20 year wedding anniversary in a few weeks too. Poor guy didn't sign up for THIS!)

I've worried about life insurance policies, healthcare bills and just being able to exercise again. And if you do read about autoimmunity, you know that stress and worry don't help! So, it's been rough. A no good, terrible, wish-it-would-go-away summer for this 40-something crazy girl.

But now... 2 months to the day after I was released from the hospital with 37 pages of information about my disease, I am beginning to see the light. I know what I need to do to work on my health. I know that I have to allow myself to recover slowly and know that this part is a phase. This too shall pass and things will get better. I'm learning that I need to get over myself and just make sure that my "after" picture is a lot better than this "before" one.  And remember that so many people have it worse.

I have found myself appreciating my family more and wanting to spend time doing the things I love instead of laboring over the things I don't love to do. And I'm learning that I can still be the "strong one" without carrying the load all by myself. Through trials and adversity, we do become stronger. And we do grow in ways we didn't know we could grow.

So, that's where I am. I'm growing (and that's not a fat joke...although completely appropriate these days).  Life looks different than I thought it would at this point - but I know that as my treatment continues and we get the disease repressed, it's going to be good. Life will go on - and I will continue to be thankful for it!

Stay tuned as I really do intent to blog more often - and I promise it won't always be to talk about this SUPER exciting health stuff. I'll probably throw in a bunch of stuff about my kids, my animals, my general complaining..... all that stuff you love to read! In the meantime, I'd sure love your prayers.