Thursday, November 3, 2011

How Much Honesty Can I Handle?

So.

I was going to entitle this post, "How Much Honesty Can You Handle?", but really, that's not what this is about. I suspect YOU can handle quite a bit of honesty. No. What this is about is me and how much honesty I can handle. This is about me getting a few (long overdue) things off my chest. About "coming clean".  Laying it all out there.  Being real.

Sounds like a SUPER fun read, yes?

I've been alternating between wanting to say something and wanting to continue not saying anything for awhile now. And, today, after a heart-to-heart with the hubs at lunch, I've decided it's time to just do it. Mainly because, well, quite honestly, I feel a little like I've been living a lie. Not an overt lie. More like a lie by omission. But, in the spirit of "the truth setting me free", I'm going to just flop it out there. Be my "authentic self", to borrow from Dr. Phil.  Oh, boy!  But seriously, more than anything, the motivation for writing this is the fact that, in keeping silent, I think I'm starting to hurt people's feelings. Maybe that will make more sense in a minute.

Those who know me best know I'm an extremely sanguine person, a person who loves being around friends and family, a person who loves to go and do and see things. A person who is always up for a party, a get-together, an event, a little road trip, a living room chat session. A happy, smiley, outgoing person who loves life.

And while parts of that description are still very much me, especially at the core, what most of you don't know is that I am also a person living with a chronic illness.

A rare, beast of a disease called systemic mastocytosis that keeps me home bound most of the time. Rather than try to explain what "that word" is, I'll now point you to Wikipedia: the source of all knowledge.  Or to The Mastocytosis Society, a less reader-friendly, more credible website.

In layman's terms, what it means is this -- I deal with almost constant nausea and balance issues. Most of the time, I resemble a college frat boy after an all-night boozer party.  From the wobbly gait to the barf bucket, I am legit.  Party on, Garth!  : ) I also deal with fatigue, flushing, swelling, hives and a rainbow of other nifty rashes (like TMEP), incessant itching, bone and muscle pain, abdominal pain, migraines, diarrhea, retching, tachycardia, difficulty breathing, and blood pressure fluctuations - especially in the aftermath of a reaction. On a good day, my nausea is such that it can be knocked back to a functional degree with Zofran and my other symptoms hover just enough below the surface to be able to effectively hide them, at least long enough for a trip to Sam's or Target or a quick lunch with a friend. On a bad day, I am in bed.  On a really bad day, I find myself taking a trip to the ER for IV meds and hydration. 

This is probably where you're saying, "WHAAAAT?  Why did I not know this? HOW could I not have known this?!"

Because, my friends, I've been living with it for about twelve years now and I am wicked good at hiding it.  Granted, for most of those twelve years, it wasn't about "hiding it" so much as it was about trying to figure out what was going on.  Mastocytosis is friggin' hard to diagnose!  For years, we've played the super fun "What's Wrong With Kristy?" medical game.  It hasn't been until just recently that we've had a name for the madness.

Now I hide it because, like the ostrich who buries its head in the sand, to acknowledge it is to give shape and form to something I'd prefer not be real. I hide it because people are inherently afraid of illness and to accept the "sick" label is to potentially look loneliness and isolation in the face. I hide it because I am human, and being human involves a certain amount of vanity and a relentless quest to appear better than you actually are. I hide it because I've always wanted, more than anything, to be a mom.  I've wanted Russ to be a dad.  And to acknowledge an imperfection in the world of adoption is to jeopardize that chance.  Which brings me to the question you're all asking at this point -- how the heck DID we adopt? The answer is simple: God knew who our children were before they were formed and He brought them to us. Period. Adoption through an agency could have been more difficult, so He brought into our lives two amazing birthmothers who wanted to place their babies through private adoption. Birthmothers who wanted us to be the parents of their babies, and nobody else.  God orchestrated every single moment of both of our girls' adoptions, down to the smallest detail.  (...And as a rather important side note, thankfully, the type of masto that I have typically just makes you feel like you WANT to die, rather than actually putting you six feet under.   Thankfully?  Ha.) 

In saying all of this, I fully acknowledge that there are people who deal with far worse suffering. Dear friends immediately come to mind.  Never do I want to be so far into the bowels of my illness that I am blinded to that fact. Sometimes when the physical crap starts to mount up and my brain starts torturing me with how different life is now, and the scary "what if"s start to creep in and the "used to be"s start spinning around in my freakishly excellent memory, I have to pause and remember all that I have been given.  I am thankful beyond measure for the blessings in my life. Blessings which include, but are certainly not limited to:

A husband who goes above and beyond EVERY.SINGLE.DAY to help alleviate the load I bear. He cooks, he cleans, he cares for our girls. You can see your face in the shine of the toilet lid when he's finished, people! He runs errands - to the grocery store, to the pharmacy, to the cleaners, to here and there and everywhere. He takes Sophie to birthday parties, to school events, to Chuck E. Cheese, to the county fair.  The man never stops. He NEVER stops. AND he goes to work and deals with the security of our country. Add to that the fact that, more often than not, he uses his "vacation days" to shuttle me to doctor's appointments or to help care for our girls when I'm having a bad day. Aaaaaand he does it with seemingly endless sources of strength and endurance, without complaining. He is Superman. Without him, I wouldn't be able to be a mother. End of story.  He is my rock.

A best friend who is there for me no matter what. No matter when or how I need him to be, he is there. He was there when I was a kid, when life was kicks and jollies, and he is here for me now - when Fun Kristy is often hard to find and Pain In The Ass Kristy is all kinds of abundant. A friend who makes me laugh to the point of shooting Coke out my nose and who listens to me and lets me cry when crying is the only thing that will help. A friend who jokingly points to his own bald head when I get down about the handfuls of hair appearing in the shower. A friend who sits with me through countless procedures and tests - tests like colonoscopies:  the true test of any friendship; who says, "Even though you are forty-flippin-years-old, I will take off work and sit with you while you take this new medication...to watch you and see if  'anything weird happens' because you are a freak and I know you're scared of such things.".  A friend who knows my love of music and how it soothes me, and provides me it in a neverending stream of awesomeness.  A friend who gives and gives and asks for nothing in return - other than that I "try again tomorrow".

Two girls who light up my life. Who have fulfilled my heart's desire. Who bring me joy, and laughter, and love immeasurable. Who complete me and give me the umph! to tackles the challenges and hardships of the day. Did I mention the laughter??? Enter: Sophie...and the Depends I have to frequently strap on to keep the undies dry when the child opens her mouth. She is hands down one the the funniest kids ever. And it is such a HUGE blessing. Enter: Eliza. The sweetest, easiest, happiest, most squeezably lovable toddler on the planet. Huge blessing #2.



Family who support and encourage me and lend a helping hand whenever needed. Who love me deeply and truly despite a pitifully long list of flaws. Who surround me with prayer and encouragement and fill me with renewed strength.  They are like medicine for my soul.  Which brings me to...

Modern medicine.  Thank you, Jesus, for modern medicine!!!!!!

A Heavenly Father who never, EVER forsakes me.

And (drumroll, please) a clear spinal tap and a bone marrow biopsy which came back negative for the cancerous form of this illness.

Yep. There it is.

So why come "out" now?

Because sheesh. It's time. To be real. To be brave. To be honest.

To help others understand.  If there's one thing I've learned from being sick, it's empathy.  How many times have you inadvertently judged a person or situation or jumped to a conclusion without knowing the full truth?  I know I have!  I think pre-masto Kristy was a bit of a Prissy Pants, in fact.  I ask you, before you become frustrated with or offended by someone, to consider this  -- maybe it's not that they don't want to come to your special event, or that they're lazy, or forgetful, or inconsiderate, or a big bummer of a friend.  Maybe they desperately want to be there for you; they simply aren't able to in exactly the way you want them to be. 

So often the surface expertly hides what lies beneath.

I don't know.  Maybe this was just for me.  A little therapeutic vent.  But if in the process of me finding a little courage I can help lighten someone else's load and encourage them to be less afraid of showing their true self, well, that's gotta be worth something, right?

"My hope in God is the anchor of my soul, both sure and steadfast." (Hebrews 6:19)

10 comments:

Kelly Zingaro said...

amazingness. that's all i can say...what a blessing your family is, and they are blessed to have you as a Mother and Wife!

Joyce Tipton said...

Kristy, I am in awe of your strength and bravery. Just recently I almost wrote to you to ask if you still had the balance and nausea problems, as I remember your and Russ' trip to, I believe, the Mayo Clinic in search of answers. Your posts are always so upbeat and interesting (I still think you should write books, lots of books) that I was hoping it was a thing of the past. You are so blessed to have such a helpmate and lover as you do in Russ. You don't know me, but I feel that I know you, having read your blog for years, and laughed, and cried, at your posts on FB. You are such and inspiration...may God continue to give you strength and hope.
Your friend, Joyce

Beth Curry said...

Why is it that you either can make me laugh hysterically or cry tears of joy, awe, or inspiration? THANK YOU for sharing with those you felt comfortable enough or simply trusted. I can assure you I will not shy away, feel pity or helpless in helping you face this level of honesty. I admire your courage to lay it all out on the table for you to face as well as others to be enlightened. Sometimes it's hard to admit we have blemishes, scars, and warts with big, long hairs growing out of them if we spend our entire time trying to cover them up.

Thank you for helping me remember that if someone isn't able to visit me or want me to come visit that it isn't because I'm not the life of the party. ;-) Seriously, I truly do appreciate the lessons to be learned here. I stand in awe of you and the beauty of your little family. And for the record, Russ sounds so much like James... We are blessed beyond measure with our men. I hope to never take that for granted!

I love you my dear, precious friend!<3

Russ said...

You know what is honestly not fair? The fact that Adam and I work and work on our 7-on-7 blog to get visitors up to 200/day during the summer. We fall off to 50/day in the off-season despite publishing twice a week. YOU don't write anything for 7 months and get 200 visits in less than 12 hours. That's just not right. :-)

I guess I'll forgive you because you said such nice things about your "Dr. Honeybuns."

Jamie said...

Wow. Just wow. I follow your posts and have missed them. Now, I feel bad for wishing you would write something for us. I had NO IDEA what you are going through. :(

-j

bethany actually said...

This line:

"So often the surface expertly hides what lies beneath."

YES. Thank you for being brave enough to share your story. I hope you find that doing so was a big relief!

Connie Schneider said...

Kristy, I love you! Yes, you are a great writer/blogger/life commentator but part of what makes you great is your honesty. That and your laugh-a-minute eldest daughter. I read between the lines that you really want to be here for your daughters and all their firsts. I want you here too. What a blushing tribute to Russ. Thanks for letting us know that good guys are out there. I am so grateful that God has provided for you in so many ways so that you can walk through this trial. I'll keep you in my prayers as I, too, am going through some "mystery pain" in my life. Hang in there, sister.

nectarine_girl said...

I was playing blog-reading catch up...and glad I got caught up. Thank you for your story. For your faith. For your courage. You are loved.

Lindsey said...

Thanks for posting. i have missed your posts, and somehow, I missed the one where you adopted another baby! Congrats! (Not on the illness) But I am with you. Honestly IS the best policy. I don't know how you kept it for so long!

Bobbie said...

I have to chuckle at Russ' comment!

I know all to well what this is like. I do not have the same disease you do, but mine is also underneath and often people think its lazy, when in fact, I'd rather burst out in tears and throw a temper tantrum that I CAN'T do something then because I don't want to. Every day is a struggle. It's hard. It's never going to be easy. The difference is that we push on.. He strive to do the little things, count ALL the blessings and push through t the next day. Each day is a blessing and a miracle.

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