Metal Vaginas and Tumors

Alt-J is playing and re-playing as I stare at my screen. The words are not coming easily and I can’t seem to get centered. There are many directions and points to hit, I’m not sure how to merge them all. Focus has never been my forte and since removing Stratterra from my medication regime, focus is an art form that I haven’t yet mastered.

Fuck it. Do the best you can Chrissy.

Right. Ok.

By Jan Ainali (Own work) [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)], via Wikimedia Commons
By Jan Ainali (Own work) [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)%5D, via Wikimedia Commons
September sixteenth a woman had the unfortunate job of trying to shove me into the claustrophobia-inducing metal vagina they call a closed magnetic resonance imaging machine. I immediately had a panic attack, was unable to breathe and had to be pulled out before the woman even left my side. As a kid we lived in an apartment complex with a creek that ran under the road that ran between the buildings. The creek would dry out and we would play in the tunnel under the road in the summer. It was full of sand and dirt once and I got stuck in it when I tried to wriggle and force my way through anyway. I had to be yanked out by my ankles after screaming for help and freaking out. Claustrophobia is now a major issue and being jammed into a man-made dry metallic vagina does that to me.

Oh my God. Oh my God. Oh my God!!

I wish I had known I had to go in this far, I would have taken a Klonopin.

Obviously trying to contain her annoyance she said “It’s only for a few minutes and I’m right here {she was in another fucking ROOM} OR you can schedule to go all the way to Egg Harbor Township to the open MRI but that will be a while.

With a rubber ball in my hand to signal when I was about to scream and claw my way out of the metal cage and tube, I managed to make it through with only two breaks.

About a week later, after calling the neurologist, the earliest appointment to go over the MRI report would be October tenth and being an impatient person, I decided to 007 the situation and pick up the report myself.

 

Imaging of Corticle Tubers from TSC foiund at WEShare
Imaging of Corticle Tubers from TSC foiund at WEShare

Within a half an hour I was sitting in the parking lot of the imaging  office with the report in my hands staring into space. It had a lot of medical jargon that I didn’t understand in detail but after years of researching Tuberous Sclerosis I knew the jist and understood these words:

multiple cortical tubers and subependymal nodules

I had expected it to say I was clear…the CT scan in 2007 said my brain was clear. Yet there in this MRI report it clearly stated that in the CT scan of 2007 nodules could be seen as present. It had been miss-read.

FuckballshitmotherfuckingcocksuckingsonofawhorefuckballsSHIT 

Does this mean my tics were actually seizures?

Will I lose my license if they are seizures?

How will I get E. to and from school…to the market…to group…fuck…

Oh shit shit shit…the kids…both girls have chronic headaches…both girls have anxiety issues, S. has my hives….E. has a mood disorder, processing issues and behavioral issues…shit shit shit not my babies. Fuck, Sn…he looks just like me, what if it’s hiding…fuck. What about Ln?

No threat of hydrocephalus at this time“…well that’s GOOD, thank God. These had to have been there a long time, if not my whole life, right? So calm down, Chrissy.

Shit, this is going to scare the kids. How do I tell them without scaring them? What do I tell them? I can’t tell them until I know more…fuck, that means I have to wait almost three weeks until I speak with the neurologist and understand it more. How was I going to hide the emotions that were inevitably going to transition through me?

 

Sy.

I need to speak to Sy.

Through all things, no matter what questions arrive about our future, we are best friends. We spoke online and he insisted on calling regardless of the time. I cried, angry, afraid…wanting to claw these things out of my brain. “Someone six years ago knew these things were in my brain and fucked up.” I yelled, shaking the folded report at the drizzling rain I was sitting in to keep E from hearing me talk about tumors in my brain, he listened to me rant and cry. He was angry and felt impotent to protect me from this invader.

Over the next few weeks there were many different feelings that evolved. The usual stuff, freaking out, anger, afraid, sad…you know the drill. My daily mental health support group was a constant place of venting and processing. Sy. listened to me incessantly, helping me process, allowing me times to be silly and forget, telling me his thoughts and daily life to get me out of my belly button focusing.

Most of the emotions were about the years of asking for help and being stonewalled by healthcare providers. The tumors blow. They sucks great big huge monkey balls, but they have been there a long time and simply are being discovered now. What I am processing is that for years I have knocked on proverbial doors trying to get answers….specifically asking if an MRI of my brain was in order and being told, not in so many words of course, that was overkill and uncalled for even though I have tumors in my kidneys and other TSC symptoms, was symptomatic of Cushings, have thyroid tests that come back up and down, have hives that come for no reason, have a mood disorder, headaches almost daily, processing issues, etc. My case has been mishandled from the get-go. I am a layman, albeit a smart layman who knows how to research, but a layman non-the-mother-fucking-less and even I can see the logic.

 

 

Angiomyolipoms By Hellerhoff (Own work) [CC BY-SA 3.0 ], via Wikimedia Commons
Angiomyolipoms By Hellerhoff (Own work) [CC BY-SA 3.0 ], via Wikimedia Commons
I want to know what happened to full clinical diagnosis? If a patient presents symptomatic of something and yet labs come back with no answer, I’m not even saying some other answer, but NO answer…do you ignore the only data you have, their symptoms, that point to something? What kind of illogical people do we give this kind of power to heal us? It’s like giving police the power to stop a killer and they ignore the clues because there are no witnesses to say they saw the guy who left the finger prints. Yet doctors do this EVERY single day, every single case. I have had only a few doctors, and I don’t say this lightly, only a few who had the presence of mind to use logic when labs came up inconclusive to go ahead and use symptoms as their clues and data or vice versa.

 

Thankfully, I have found a neurologist who is logical, organized and takes the entire picture into account. My diagnosis is Tuberous Sclerosis and a Tic Disorder. No seizures. We will follow-up in four months.

Telling the kids took two days. E. saw me walk in from group carrying the films and asked to see them. “Well, I want to go through them with you.” I said. “Whats wrong with your brain?” she said accusingly.

We went through the films and I showed her the tumors and we tried to find the nodules to the best of our ability, though to be honest…who knows if we were looking at my brain stem, nodules or my fucking pituitary. Thankfully, we weren’t performing surgery. As we walked away from the living room windows she stopped and half turned to me, asking, “Should I get my brain checked since I get headaches and you have it?” Scanning for the right words and inflection, I casually said that since she had headaches, it’s a genetic disorder also and she has a mood disorder it was a good idea just to take a peek. S. had already had a CT scan that had come up clear (I had ninja’ed that info out of her). She’s been Zen about it.

Telling S. and Sn was tougher. It was on the phone. They aren’t with me to hug though they seem to be absorbing it well and asked great questions. How they handled it when we hung up, I can’t say but I’d like to think they would call if they need me.

Today…now…I feel I have come into my own. Labels that have been placed by people have been removed from me. My mood disorder has a cause, my childhood trauma is finally being dealt with and being closed up. My psyche prescriber has given the green light for the removal of the lapband since the tics are diagnosed. I am not a hypochondriac, I do not have “so many things wrong with me“. I am no longer a puzzle.

I am simply Chrissy. I will find out who, exactly, that is now.

 The tumors need to be monitored closely with MRI’s every year or two. Now that I know they will be jamming me into a mental vagina I will be prepared and lube up with an anti-anxiety medication like Klonopin or Vistaril.

Lots and lots of medicine.

 

 

Chrissy_lime1

 

 

 

 

Addendum:

The largest cortical tuber had turned out to be 10cm x .08cm which explains my issues with language aphasia, some of my epilepsy, impulse issues etc. Learning these things has allowed me so much better control over how I process things and I’m more peaceful and my ability to deal with everyday life is less complicated.

 

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