Chicken, tiredness & awareness.

Yep. We’re gonna cover all three real quick here so buckle up and hold on.

{disclaimer – I am beyond tired at the moment so this post may be full of typo’s and/or swear words. Because sometimes my typos ARE swear words. accidentally though. Just – be warned. Grandma, mom, people who think I am perfect….forgive me. }

Gosh it’s been so long since i last updated…I don’t even remember where I left off. Oh – an after  PGH update. Yeah i am not even sure how to catch back up after that. So we’ll hop into something nice and warm and fuzzy first, and then you’ll get all the leftover crap at the end, which you can then decide whether or not you want to pilfer through, kk??? good.

THEY OPENED A CHICK-FIL-A RESTAURANT BY MY HOUSE!!!!!!!! Yes, Jesus loves me.

I know that some of you have like 87 cfa’s within driving distance and you don’t get it.

I know that some of you have no idea what the big deal is about our new cfa.

I know also that MOST of you who know me and my insane addiction to cfa as of late that you are calling Jeff Van Vonderen and his A&E crew and preparing your “Your addiction to cfa is affecting me negatively in the following ways…” speeches.

AND I DON’T CARE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I have yummy nuggety goodness just a few minutes down the street now – whenever I please!!! And REAL sweet tea, not the fake stuff from mcD’s. And some of the best chocolate shakes in the world! And just because they already know me by name when I pull up to the drive thru (no i am not kidding), and because I am on a first name basis with the awesome Operators, Doug and Becky, with their adorable son Ethan – this, I promise you, does NOT mean I have an addiction!

I will tell you what it DOES mean though – I recognize quality and goodness when I see it and THAT i can get behind. it does not help matters that i sat at the fricking wendy’s by my house tonite for 20 minutes while ONE person halfheartedly sorted frosty sprinkle packets and ONE person was….kind of making food, I guess, and THREE people sat on the counter talking!!!! OH my gosh my blood pressure is still elevated from waiting there while they would not give me my money back and did not know enough english to explain to me what the fricking problem was!!!! Ok yes, i should maybe consider cooking at home more often – but ….. that’s besides the point. The point is – that would never have happened at CFA. Ok, now I am starting to sound a little bit like a junkie….

Second topic: tiredness. This is a large part of my absence for a couple weeks. Work has been beyond crazy and just not a whole lot of something I can get into, but its been a huge heavy weight on my shoulders since we were in pittsburgh, and while there is still no resolution to the problem, I am at least learning to move forward through the chaos. But I am still very tired from it. All of the stress and sleeping on hospital window bed for almost 3 weeks/the month of august, and eating not the greatest led to an inevitable flare-up of the fibromyalgia I was diagnosed with a few years ago. It’s not something I like to think about or even really acknowledge that much (apparently this is a theme with all of my medical issues – hello asthma mgmt meds? what? Nahhh I’d rather just get pumped full of steroids when things flare up real bad). But it took a MAJOR toll on me the past couple of weeks, leading up to a pretty bad week this past week.  And by bad – i mean that fibro is painful, and a nearly debilitating fatigue, and it makes your brain so foggy you can hardly form words or say your own name. I really don’t know HOW I made it through this week except that I know so many of you are praying for us and I know that God is amazing and awesome and gives us the strength we need when we need it the most. but that’s all I really want to talk about that.

I am feeling a LOT better after getting a lot of good rest in over the weekend. blog1So – onward and upward. And on to more chicken!!!

Third topic: Awareness. Yes I know its a broad topic. As in, wouldn’t the world be a better place if we were all more AWARE of things around us – people’s feelings, other cars, life-threatening diseases, etc.

See, today, Kendall and I went to the Chicago Energy for Life Walk for Mitochondrial Disease Awareness. This is Mitochondrial Disease Awareness week. This is me finally realizing and acknowledging that mitochondrial disease is a part of our life. Part of what I haven’t been able to process from our pittsburgh trip was the notes from the geneticist who consulted on our case while there, who has previously reviewed our records. It’s a lot of technical mumbo jumbo which makes most people’s eyes glaze over when i start talking about it – but basically, he felt that if her mitochondria/muscles were already showing signs of disease at 7 months old (when her biopsy was taken), that it was more than likely progressing to a “diagnosable” deficiency by this point in time. I know that doesn’t make sense  if you have no idea what mito or metabolic disorders entail. So as best as I can explain it – reading that note was like a punch  in the gut. It was the moment I realized that this might all be true – all this existential talk of mito as a diagnosis for Kendall. That all the months and long nites of research and reading medical journals and studies on lab results and looking up words that I didn’t know the meaning of and putting the pieces of the puzzle that is her together all of a sudden were REALITY instead of just thoughts/fears/a catch in the back of my throat.

i mean, don’t get me wrong. It’s not like this comes out of the blue. This is part of why we sought the help of a “mito expert” in pittsburgh, knowing that mito was our likely diagnosis. I don’t know. i can’t explain it good right now (see aforementioned fibro brain fog…)  But basically – it was like a tiny corner of my heart still wanted to hold on to the hope that there is something ELSE we will find. Some other disease – one that has a cure, a treatment, an easy to pronounce name – something everyone can understand. Because mito is none of those things.

Mito – mitochondrial disease – has no cure. You can “treat” symptoms with a cocktail of expensively compounded liquid vitamins (similar to the b12 shots we sometimes have to give kendall), you can “treat” with lots of therapy (at least we have a leg up there!), and of course you can “treat” the damage done to organs by failing mitochondria (like a GJ tube to bypass a failing stomach, oxygen to boost failing lungs, antibiotics to boost a failing immune system, etc.). But there is no magical THING we can do to fix Kendall’s genetic material. It is inherently defective. the best we can hope for is SLOW progression of the disease, and GOOD progression of her own strength and skills. It is hard for people to understand how she can “look so good”, and yet be so sick. It is hard for me to be her constant advocate, knowing that if I let up for a second, we might miss that one little sign that is my clue to getting her the help she needs BEFORE it gets bad. She has been hospitalized 6 times this year. Granted, a few of them were kind of back-to-backs that SHOULD have been one long hospitalization if we had a continuum of care in place! But the point is – she has still been in that many times in SPITE of me doing my best to continue treating things at home. I avoid taking her to the ped, or even calling her, for as long as I think I can possibly do so, because I usually KNOW that the end result is an admission, or at least a long ER trip. And our new ER protocol letters instructs the docs to admit kendall until full feeds can be resumed. Oy. I hope I am wrong about this – but I think it’s going to be a very long winter.

Anyways – I am coming to terms with it a little more. Not that it will ever be an “easy” thing to accept – and I don’t know that I will ever fully ACCEPT mito. But we have now named the monster – we know what we are fighting against. So as my own “awareness” of mito is coming out more this week, I want to share that with you all.

to start, here is a good, condensed, not-too-medical version of some mito FAQ that might help explain things a little more.

I will have more info as we go through mito awareness week. But to those of you who have already taken up the torch for Kendall and for mito – by posting on your FB wall, or by voting in the Pepsi Refresh project, or by just asking me how I am doing lately, and then being the support to hold me up however I need at that moment – thank you. I cannot put my true gratefulness into words. Some of you have gone above and beyond this week – and you may not have even known it.

Here’s to a great week this week. And lots and lots of chick-fil-a. 😉

t-crest

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Comments

  1. Wow! It’s a lot to take in! But first off, I’ve never had CFA, so I may have to venture down your way to try it!! LOL! It’s all you’ve talked about for the past few days (ok, well, weeks 😉 actually)!!

    Secondly, I understand that feeling of acceptance. You want an answer, you want a name for it, but you don’t always want the name you know it will be. But it sounds like you’re getting so much better advice and and directions from good doctors. That makes such a big difference!

    Thirdly, well, nothing really… but I thought I needed a third, since I did first and second. Soo… what should I get at CFA if I ever make it down there!?! LOL!

  2. Oh my gracious I wish I could just give you a big hug right now!!!!
    We love your whole family so much! Here’s to a great week and lots of smiles and giggles!!

  3. Hugs Sweetie!

    I remember our “real” dx day as well. Very vividly. Just know your are not alone.

    Praying for miss K….For you……for CFA to never run out of nuggets for you..and of course the pygmies.

    luv
    Dug

  4. lol. i used to live in Texas, where there was a cfa on every corner! LOVED IT! now i live in southern california. they opened one about a year ago where Q’s hospital is, which is like 1.5 hours away from here. so i go there all the time when we go down there. You are so silly.

    So sorry about all that is going on with yourself.

    Mito sucks booty. Everyone says Q probably has mito, all her docs and everything, but we HAVE to see a mito specialist to confirm this. I just can’t take not having a mito doc on board. I need a protocol letter, counceling and some kind of clinical direction she is going. It’s obvious right now, but i need a diangosis set in stone. But, she definitely seems like a very typical mito child. Kendall too. Mito sucks. awesome of you to spread some awareness.

  5. Well, first of all, I thought there should be comments from 3 Sarahs…so here I go…

    We love you all dearly. More than YOU love CfA. 🙂