Wednesday, December 11, 2013

I, Jillian, Threw a Chair

I did.
I threw a chair.

A couple months back, I hit a low, and I didn't know what else to do- so I threw a chair.

I felt like my whole world was beginning to crash down, spiral out of control- and I had no more energy or ideas on how to stop it.


After a couple weeks of school, Quinn began to quickly unravel. The years we had built a "tool chest" to help her, and us, cope and recover from the barriers brought on by her neurodevelopment disabilities- they stopped working. Her developmental pediatrician prescribed a new medicine, and it brought back seizures, and even stronger un-wanted behaviors. Stopped the meds, started more interventions and then, for the first time, we had truly lost our Quinn and were solely surviving the behaviors. We were battling a whole new set of rules and there was no rule book in sight. It was scary. So scary.

When Carter turned 18 months, she and Quinny got sick- 22 days of throwing up and flooding out. No doc could figure out what or why this was happening- when it ended, they assumed it was a virus or bacterial infection and moved on. Quinny moved on too- Carter never really recovered.
This past spring we began to think (we as in her allergist) that she was having an allergic reaction to the sun, then by mid summer we knew it was something more serious.
In the HEAT, she would melt (anything above 74 degrees). When I say melt, I mean she would melt. She would collapse, swollen face, red as licorice, sweat like a marathon runner and not recover for hours. She was drinking more than 100 fluid ounces of water, a day. She stopped developing with verbal language, showed signs of extreme fatigue and she stopped growing; to name a few of the issues.
Our naturopath said it was some kind of a Mitochondrial disease- the western docs spent months doing blood draws, urine tests, stool collections- nada. They couldn't figure out what was wrong, so they blamed it on "behavioral" issues. I put in a request to see Kaiser's pride- pediatric neurologist, Dr. Konkol- it was now a waiting game until his appointment.
This was scary. So scary.

Enrich All was going, the organization that brought me my self worth was leaving my side and I was stripped of this fictitious support that aided me the ability to believe in my own abilities, creatively, intellectually and professionally. It might have been a facade of emotional stability for me, but for me, it was my stability.
And it was leaving.
And it was scary.
So scary.

And then. For fun- my body was giving out.
In college, my last year in Buffalo, I started getting these random bouts of exhaustion, GI issues, painful legs, weak legs… and for the most part I could ignore it, adapt, and in a few weeks these series of lame-ness would subside and I was back to normal Jill.
During my pregnancies, the issues were worse, but one could blame that on pregnancy, right?
Then I had Crew, and the bouts of exhaustion and pain became closer together, and were stopping me in my tracks.
I would be on mile 3 of a 10 mile run, and my legs would collapse and I would pee myself. Never left home without my cell phone, because I never knew if this was the run I would need to be picked up a few miles into the country.
And by end of summer, I would have weeks where I could not even pick up Crew.

I started to actually follow through with the phsyiatrist, rhuematologists, and neurologists. But every time a test would come back, it was normal.
I was devastated and embarrassed.
Was I becoming one of those chicks on Law and Order who create a life based on hypochondria?
All three gals in our family were having significant, life altering symptoms, that no one doctor could fully identify.
I kept going back to my therapist, begging for some kind of mental health diagnosis that would explain these health issues that seemed so odd and too far fetched- depression? Anxiety? Literal hypochondria?
She said Anxiety was an issue in my life, caused by my ADHD- so I did cognitive therapy and took medication for my ADHD- my anxiety went away- my physical ailments did not.

My hope was fading.
What the hell was going on?

One day in November- I threw a chair.
I was full of so much anger and confusion and fear I didn't know what else to do.

After: I sat on the toilet and cried my eyes out like a four year old kid.
And decided, then and there, to stop distrusting myself.

I decided the last thing I wanted to be, or represent, was a victim- the whole "why me" "it's not fair" bullshit has always gotten my goat. Couldn't' tolerate it on others, and got nauseous when seeing it on myself.

I needed to trust my gut.
I needed to trust my cognitive abilities.
And I needed to get tougher- emo wise.

And I did.
Made the choice, work hard, and did it.

A month ago I took charge of Quinny's path. I no longer waited for doctors to Guinea pig my kid- I called and emailed, called and emailed every professional in my books on neurodevelopment disabilities. I finally reached a doctor from the University of Washington who was a researcher for FASD (for 25 years), and now has her own organization helping families navigate the specialized field.
She was full up with clients, but she stayed on the phone with me for an hour and a half, helping to guide me in the direction we needed to go.
I got Kaiser (our insurance) to listen to our appeal on paying for specialized supports.
We got the county to identify the severity of her barriers and they opened the doors to more therapeutic assistance.
Quinny's IEP team at school circled their wagons, and promised to do everything they possibly could to help- and they have been living up to their word.
We've got her back- still up and down- but we're not scared anymore: we're getting educated.

Today- Carter was OFFICIALY diagnosed with MITOCHONDRIAL DISEASE!!! By her (and our) beloved pediatric neurologist, Dr. Konkol. To receive such a diagnosis from a western doc is a big deal, a lot of people give up hope of ever getting medical care, and some die waiting- but I got back in the fight and advocated and made sure they knew they were going to take care of our babe. Not to mention Dr. Konkol is one of the best pediatric neurologists in the nation- AND he is obsessed with our naturopath (he is even teaming up with her to help with Carter's treatment plan!!).

My neurologist told me last week that she thinks my symptoms are showing mitochondrially- I have significant leg muscle atrophy and peripheral neropathy type stuff- FINALLY some answers!
Going in for more tests in two weeks, but with Carter's mitochondrial disease diagnosis (mitochondrial diseases are passed down maternally), and with some answers coming our way- I am feeling so much more sane.

And professionally?
Not so scary after all.
In fact- I am in love with my new job, the organization we joined and the light of the future.
I really AM capable.
I really can do it-
and with the crutch of EA taken away, relying on my own abilities and not a title of success, feels true, and real and impactful.

We have a long road to hoe.
Quinny's abilities and barriers will forever be manifesting and needing a lot of therapeutic adjustments.
Carter's disease is life long, can get scary, is expensive and a true lifestyle commitment.
The time it takes to take care of myself is going to be a daily battle and force of guilt.

I'm not crazy.
I am capable.
We have Jake. Amazing, wonderful, rock solid Jake.
We have each other.

I didn't break the chair, when I threw it.

No comments:

Post a Comment