Wordless Wednesday 8/7/19

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8 years old

Every year when this date pops up it brings with it such mixed feelings.

I was terrified I was going to die.

I was terrified I would be different. (I know I am different today; and in many areas too! It’s a moment by moment struggle towards acceptance of this fact.)

Different isn’t wrong I suppose.

Thank you to all my family and friends who continue to support me every day! And to those who just smile with me when my words get stuck or I repeat the same things.

I know it. I see it. I feel it. It frustrates me to no end that these things happen to me now; alas this is where I am at today.

7/18/11 💔🙏🏻

The biopsy that never was

I’m not sure if you remember my thyroid drama and what’s been unfolding since October 2018.  To briefly recap: I had thyroid cancer in 2003, total thyroidectomy (we thought), RAI 2004, follow up surgery 2006… (finally) got diagnosed with Cowden Syndrome in 2011.  However, last year when I had my usual thyroid ultrasound “something” was found.  Cut to thyroid MRI and 2 fine needle biopsies we still DO NOT know what this “something” is.  Lymph node? Malignancy? I don’t even know what other options it could be; I just know that my doctor still does NOT KNOW what it is.

Friday morning I was set to have my 3rd fine needle biopsy.  Also, I changed insurance in April of this year, which means everything I had scheduled had to be canceled, I had do jump through new hoops to get XYZ approved/authorized, blah blah blah freaking blah.

So, I DID GET an authorization for Friday’s appointment; however, it was “coded” as an office consultation, and not a procedure.  I made more phone calls, wasted more of my time, called everyone and their dog (insurance and clinic) to tell them the authorization needed to be adjusted to reflect what was happening this morning.  Or, rather, what was SUPPOSED to happen this morning.

Of course I called the clinic this week to make sure they had the correct authorization.

“Oh, don’t worry Heather.  We will run it through as an urgent auth. but still come on Friday it will be OK.”

Oh balls.  The clinic should know me by now that I just don’t “come to visits” without making sure everyone has done their job.  I am not getting stuck with some random bill that is not my responsibility to pay.

Sadly, the clinic’s employee didn’t do what he was supposed to do from JULY FREAKING 2nd.  I called then and told him about the incorrect code on the auth. I had received.

This is so dumb I can’t even see straight.  From someone who is living with some very complicated medical conditions, I shouldn’t have to babysit all these people to make sure they do their damn job.

 

Frustration X 1,000,000,000,000 %

I’m so frustrated right now I could spit nails.

I got a job a few months ago.  This is great.  This. Is. Great. However, I now have insurance.  That costs me $300/month.  I won’t go on about that right now.

What I will go on about right now is the damn paperwork and hoops that a medically involved person must go through.  Why?  What the freak for?  Just to see A DOCTOR?!  You know, the doctor(s) I have been seeing for 8 years? I’m not a normal person who gets sick once a year and can go to the doctor then.  I am the person who must go to the doctor, usually, every 90 days.  I have 5+ specialty doctors I must follow up with, but thankfully am established with them. So, whew.

Why do I have to do everyone else’s damn job?  Why must I call the primary doctor, then the insurance, then the specialist, then back to the insurance to ensure that they are all communicating and are on the same page?  Who the hell has time for this crap? I’ve made/received 10 (!) calls just today on getting authorizations sorted out and making sure things have been “coded” correctly, and finding out which actual doctor will do the correct authorization?

Aw, hell.  It’s only 3 PM and I’m done and over this b.s.

I have 2 appointments next week – Neurology and Endocrinology.  What do you think the odds are that I can actually see get these appointments authorized?

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PS, what happened to spell check in here?

Guest post – Meet “C”

Thank you Social Media for connecting me with other warriors who are living and thriving with Cowden Syndrome.  I am pleased to introduce you to “C”

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First I wanted to say thank you so much to Heather for being so passionate about making sure that awareness is spread about genetic rare syndromes and diseases and such. It is such an amazing thing that she is doing and helps so many people!

So hi! My name is “C” and I am a medical weirdo (my own term for myself) I have Cowden Syndrome, an AVM in my left forearm, and as an offshoot of my Cowden Syndrome I have recently started a journey with Thyroid Cancer, and I have Generalized Anxiety.

I was diagnosed with my AVM when I was in fourth grade after going to a friends birthday party, playing dodgeball with soccer balls which is never a good idea. I near the end of the game I was hit on my left forearm with a soccer ball, my left arm swole up and I ended up going to the ER that night. Needless to say none of the doctors I went to that first year had any idea what was going on with my arm, one thought it was a type of fracture that would’ve shown up in a couple days, another thought it was some overexertion of a swelling thing (I don’t exactly remember what it was called), and another one thought it was some cancer like thing. And it wasn’t. I eventually was diagnosed with an AVM and then a few years later after growing a thing in my foot I was finally diagnosed with Cowden Syndrome.

And as a result of all of this, I deal with Anxiety on a day to day basses, which I eventually got on meds to help me with.

A couple of months ago my doctors wanted to do a baseline scan of my thyroid because people with Cowden are at higher risk for Thyroid Cancer. Soo they did the scan and found two nodules on my Thyroid (one for each lobe/side). They did a Thyroid Biopsy (which ends up feeling like a huge bruise for a couple days afterword), and a couple days ago we got the results back. Turns out I have cancer, but it is undetermined how much cancer there is or what to do with it. A small part is definitely cancer, another part definitely not cancer, then the majority of it is something they can’t tell whether or not it is Cancer because of the fact that my P10 is the only thing they are picking up.

Sooo, now that I’ve told my story I wanted to just say that if you are one of the really cool people who have a genetic rarity you are not broken. Just because you are different from everyone else and can’t do some stuff that others can doesn’t mean that you are less than or unworthy of being a human being. And I know some of you probably wanted to punch me for the first sentence of this paragraph but you are really cool! You have this unique point of view that could maybe help someone else, and you have this way of thinking that helps you be empathetic to others who are struggling. So you really are a cool person!

If you would like to connect with “C” – her Instagram account can be found here.  ❤

Uses

I started this blog almost 8 years ago as a way to communicate with friends and family about my brain tumor diagnosis and surgeries. Then, my blog became a friend; someone I could talk to about the very things keeping me up at night. (The recovery of 2 brain surgeries a week apart is one the hardest things anyone can endure, IMO.)

Slowly, albeit very slowly, I have found my voice – welp, kinda – and I am feeling comfortable writing about other things in my life: my faith, more about my health as I made some major decisions the end of 2017 and my life is in a different direction now, my financial ruin, bankruptcy, and now seeing the other side of those things, and more!

I guess my point is I am gradually feeling the urge to share a bit more about myself. I hope you stay around. ❤

Unexpected

I ran into an old colleague. It was unexpected but really nice to chat with her for a few moments.

Eight years ago, when I was literally being wheeled to my first craniotomy (head bandaged and wrapped and all) – we passed each other in the hospital. I in my wheelchair, she was standing near a Nurses Station. I assume she was there visiting someone, family, etc. I can still see and feel in my body RIGHT AT THIS MOMENT my emotions at that exact moment – so many years ago.

It’s so odd to me, albeit even overwhelming, that I still have such intense reactions to things that trigger me to that time in my life.

That time of my life was a living hell.

I wonder if my vivid memories – and the reactions they trigger in me – will ever subside?

If I wanna get some sleep tonight …

I probably shouldn’t ask questions of my Mom about the brain tumors.

I’m all worked up now; I don’t think the Trazodone will work tonight, dammit.

We were just talking about wisdom teeth and how I’m the only person I know who didn’t get ANY! 😝

(My Mom got 1 and she doesn’t remember about my Dad) and I said jokingly, “Maybe mine were in part of the brain tumor Dr. K got out”…..

Then it went off the rails (for me) right after this. Dr. K told my Mom in 2011 the smaller, encapsulated tumor is circular in shape.

And the 2nd tumor, the big one that is kicking my ass, AND WAS THE REASON I HAD TWO BRAIN SURGERIES 1 WEEK APART – has “fingers”. No border, I guess, right? 😳🤕

And those damn fingers are going to grow and get deeper in my cerebellum. And continue to wreak havoc in my daily life.

I know we ALL struggle and have trials/tribulations – but how am I ever supposed to triumph over this? Can I? Will I? How?! I had such hopes and dreams for my life and future. 💔

This freaking sucks; it sucks balls that I have to deal with this all by myself, I’m just saying. I’m almost 50 years old and I wish I could catch a break.

I hope(d) and pray(ed) that the Lord would bless me with a partner/companion/trusted friend who’d want to help me carry this load. Guess I’m crap out of luck. I’m tired. I’m tired of all this brain stuff. I’m tired of being alone – what friends I had – are gone. Do brain tumors scare people that much? Then IMAGINE what it’s like living with 2 of them? 😐

I hate you Gangliocytoma.