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Monday, February 18, 2013

Boiling over



I feel like a big ole pot of stew, full to the top with so many things I'm trying to keep under my lid. Just simmering all the time...  then someone tosses in -one more little thing- or turns up the heat just enough, and just like THAT it's boiling over everywhere. One big hot mess of CRAZY, stressed out mama!

My daughter's health terrifies me, always. When she's doing well I can keep all those fears and worries hidden, simmering. Things are going better than expected, and I know "it could be worse." I'm so grateful that she's doing OK in spite of everything that's wrong with her little body. I try to stay calm and distracted and hopeful, and usually I can. She looks so healthy, acts so normal, that she makes it easy to get lost in denial. Then one night I see 4+ protein on her urine dipstick and I seriously lose my shit.

All the fear and the anxiety of the last eight years can no longer be contained. Every moment of frustration and helplessness, every night of sleep deprivation, every clueless doctor, every ugly thing that she's endured rises to the top. And every hope that maybe she's going to be fine... dashed with one urine covered, dark green square. Oh my God...

"Off to bed sweet girl, mommy's about to become hysterical, and drink WAY too much wine, cry and pray that this isn't "it" because she can not deal with "it." Not ever." Obviously I would never really say that to her, but I did lock myself in the guest room and sob hysterically. Just like that.    I did manage to calm myself, at the expense of my liver, and scour the images of her on dialysis from my grey matter before I drifted off to sleep. Good times.

It's OK, she's been sick. Kids with nephropathy can spill large protein when they're sick. Especially if they've missed a few doses of their meds. Says her nephrologist. It probably doesn't mean her kidneys are worse. Just because it hasn't happened in more than three years doesn't necessarily mean that the damage has progressed. This is probably not the beginning of the end. Take a deep breath. Simmer down.

The protein dropped dramatically over the next few days, but in that moment, in that sudden overwhelming fear, I could not keep a lid on it.

Meanwhile... her feet are not OK. She walks like an old lady in the morning and runs like a special Olympian in the afternoon. Why? There are no signs of inflammation in her feet "on exam" according to her rheumatologist. Her arthritis doesn't act like classic RA. No swelling. No answers. What the hell is wrong with her feet? He PE teacher recently asked for a PT consult because her "gait" has gotten so bad. She has pain when she runs, always. She's been stiff every single morning since she was 2 years-old. WHY?!

So we get an x-ray "to evaluate joint damage from JIA" and another doctor call, uhm... she has "osteopenia." What? "Low bone density." It's not as bad as osteoperosis, yet, but it's not good, and not -at all- normal for a child. Ab-freaking-normal! One more thing. One more ingredient to add to this stew of crazy health problems that no one has an answer for.

WHY? I asked. " We don't know why." They answer... as usual. Maybe from her years of arthritis, maybe from her systemic AI disease process or maybe her GI issues don't allow her to absorb vitamin D and calcium.  And... it may or may not be causing the problems she's having with her feet... just FYI.

Boiling the eff over. Everywhere. That's all it took.

I really try not to focus on the recipe for disaster we are cooking here, but sometimes, like NOW,  it makes me a little bit crazy.

Insulin dependent diabetes, arthritis, hypothyroidism, asthma, kidney disease, allergies, GI issues all brewing in a broth of auto-immune crap that closely resembles SLE (Lupus). Do I even have to say that this pot is FULL? That her little body doesn't need one more thing. That her mommy can't handle one more thing! Not one more little tiny freaking carrot can fit into this pot!

Weak bones? Seriously?

Why is my 8 year-old daughter dealing with health issues that belong to an 80 year-old?  And why can't anyone do anything about it? Story-Of-Her-Life!

I told the rheumatolgist not to ever call me again with abnormal results and then say "we don't know why and we aren't sure what to do about it." Yes, I really did. Why do we keep testing her for things if the results don't matter... because there is nothing we can do about it anyway. So dammed frustrating! I have clawed my way to top physicians in every field of medicine and still.... "Autoimmunity is very complicated and poorly understood." That's all I get. Prognosis? "Complicated and uncertain."    Why?

I'm simmering down. Really. I've been overwhelmed more than once in the past eight years and I know that it doesn't help to be ANGRY and sad. I know that I'm supposed to handle each new challenge with grace and a smile...  I just haven't felt like it. It's been a little messy. I know I have to clean it up and get past it, again. We have a LONG road ahead of us and we are no where near the worst of it. Actually, we are very likely in the best of it. She is young and strong and resilient now. This is likely as good as her health will ever be. That is hard to swallow, really hard.

Will I live my entire life cycling through endless phases of grief for her? Fearing that the next illness will send her spiraling into an AI flare that results in kidney failure, which will be so insanely complicated by her other mess of health problems that she will never survive it? Probably. There "it" is. The thing I normally keep under my lid because it's too ugly to say. She may appear to be fine on the outside, but what's brewing beneath the surface is truly terrifying. Sure, I can smile and put on my pearls and tell you it's "OK," but it's NOT OK. Just turn up the heat a little and you'll see.

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The geneticists at Baylor have finally finished sequencing her exome (it took nearly a year) and are now in the process of sequencing the rest of our family. They are trying to make sense of her many gene mutations and see if any of them hold answers to her "novel" disease process. I'm grateful that they are trying, but they have told me repeatedly that it will probably never change anything for her, and that auto-immunity is all but impossible to unravel. But I still hope. She is so strong, in-spite of it all. Maybe because of it all? She's amazing. I will never stop fighting for the best version of normal that I can give her, never. She's going to be OK. It's time to fix my makeup, put on a smile and adjust to a little more heat. I can take it, I just really, really wish she didn't have to.

5 comments:

Camille said...

My heart goes out to you my dear Amy. Continu to love her as much as you do, you are such a wonderful mother! ((((((big hug)))))

Kelly said...

Oh Amy...I, for one, would never expect you to simmer down or always handle this with grace and smiles. I can't even begin to imagine the frustration, anger and fear you carry. I know most days are good days regardless of the underlying "truths" your sweet Emma faces and carries...but a mommas heart takes the biggest hit of all! (hugs)



megs5481 said...

Hi! I just found your wonderful blog! My son Connor was diagnosed 2 weeks ago with type 1 diabetes (he's 3)....needless to say it's been a rough, sleep deprived, worry-filled couple of weeks. My son has celiac disease as well as type 1 diabetes....all of the symptoms you listed with your daughter sound like celiac, just curious, have you tried pulling her off of it for 3 -6 months? It causes severe joint pain, muscle cramps, vitamin d deficiency, skin problems, obviously GI problems, and a host of other problems (and it's common to have celiac & type 1 according to our endocrinologist). Certainly hope your little girl gets better!!!

Amy said...

Thanks ladies! Megs I'm so sorry to hear about your little guy. I know it's tough enough dealing with one dx's. Things will get a little easier in time. We are sure that she doesn't have celiac, at least not yet. She gets tested every 6 months for auto-antibodies since she is high risk. Her condition is very complicated and is not limited to things you would normally see in a child with diabetes. It appears that her regulator t-cells don't function properly which allows her immune system to attack any part of her body. It's all pretty crazy, and extraordinarily frustrating. Here's hoping the research pays off someday.

My best,
Amy

Anonymous said...

I hope the research pays off one day. Despite her severe autoimmune issues, Emma appears to be relatively healthy; I just think there is some protective process the doctors have not discovered. There is no explanation for her relatively good health considering her multiple issues. I think she will continue to do well and will surprise all the docs. She has so far. Something is protecting her; some may think God; I think something biological or genetic in her make-up. Emma, you, her family are fighters. You will not give up and neither will she.