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 💔🙏🏻

Advertisements

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?

.

.

.

.

.

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”

*

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.  ❤

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.

Chronic Illness Tag

I have tried to get my creative juices flowing lately.  I found this post from The Cacophonic Blog and decided to give it a whirl.  It’s just kind of a recap – current update – on my medical status:

  1. What illnesses do you have?  I am living with 2 Rare Diseases; Cowden Syndrome and Lhermitte-duclos Disease.  I also had thyroid cancer in 2003 and a prophylactic hysterectomy.  I have suffered with depression and anxiety for the last 20+ years.
  2. When were you diagnosed?  The Rare Disease diagnosis came in 2011.
  3. Have you ever been hospitalized?  Oy vey.  So many hospital stays.  The major ones are for the brain surgeries in summer 2011.
  4. Have you ever had surgery?  See above.
  5. Do you take any medication?  Presently, I take an anti-depressant and something to help me sleep.  I don’t know if it’s a symptom of menopause (probably) but I have insane insomnia and do not sleep without Trazodone. I take vitamins and herbs (anti-virals) also.
  6. What do you wish people knew about Chronic Illness?  That is sucks.  And, if I’m quiet – please check on me.  You’d be amazed at what a quick text can do!
  7. How can awareness be raised? I think talking about it can do a lot.  Many times I find myself “playing the brain tumor card”.  It actually helps me cope and accept my medical status if I talk about it!  I’m sorry if it comes off rough or if you feel I’m too blunt, but let’s talk about it!  I’m not afraid (welp, kinda) and want to talk about the brain tumors and hereditary cancer syndrome. Oh, and follow me on Social Media!  Twitter and here for Instagram.  🙂
  8. Who knows about your illnesses?  I actually don’t know.  Sometimes, I feel that my friends may forget what I live with daily.  However, we all have our crosses to bear, of this I know!
  9. How do your illnesses affect your life?  Oh, this is a doozy of a question.  Today, it affects me differently than years ago.  I have learned to pace myself, to stay hydrated BEYOND belief, to bring a sun hat if I’m going to be out in the sun (my head HATES the sun now), bring ear plugs with me everywhere I go (my hearing is so sensitive now), and to TAKE A BREAK if I need one.  I find that after a long day, it’s best if I go into a dark, quiet room and turn off my brain for about 45 minutes.
  10. If you could tell the medical community one thing about your illnesses, what would you tell them? Since Cowden Syndrome and Lhermitte-duclos Disease are rare, we need to walk this road together.  Most of my doctors support me on this, that we are a TEAM, and what I say GOES.  I’m very thankful for them!

 

I’m forever playing catch-up with my life

Where or where to begin?

I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe.  Writing, sometimes, helps me breathe.

Here’s a quick recap on the last few months:

  1. In January, I lost my rescue dog.  I loved him for the past 8 months and he forever changed my life.  I was utterly gutted at his loss, but it was time.  He was ready although I never was, nor ever will be.
  2. Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet.  From the brain tumors?  The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell.  The dot and the period.
  3. Do you remember the thyroid issues I have dealt with since last October?  Last month also, I had another fine needle biopsy on my (empty) thyroid bed.  (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING  ON IN MY NECK! I had have elevated thyroglobulin and my doctor thinks maybe it was a technician error?  Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
  4. Haven’t filed BK yet.  Found out there was some paperwork I need to submit to one of my creditors.
  5. My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
  6. I deleted my twitter account.  I don’t know why; just felt like the right thing to do.  Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
  7. I have this great urge to purge (LOL).  Probably the shame and anxiety about the BK.

So, what else folks?  Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do.  Let’s see if I fight against my norm and do it different.

 

 

Sounds about right

I have been awake since 2:30 AM this morning with a pretty big migraine.

In about 12 hours I will sign the paperwork to file bankruptcy.

.

.

.

.

.

#CanIGoBackToBed

Financial status 2019

Hi there.  It’s been a while; I’m still here.

I think I have written many times about my toxic financial situation post diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  For the sake of time, I’ll try to snapshot it here:

  • I’m in debt over $20,000 on my credit cards as I have been forced to live on them, since I can no longer do what I once did for employment.
  • I have kicked around this idea for months, the bankruptcy idea.  I have prolonged it as long as I could because my ego and credit score. 🙂
  • I also owe over $35,000 in student loans (you know, the whole career thing I had planned before having 2 brain surgeries, et al.)

I called one of my creditors this morning to find out about any hardship programs they offered.  Currently, my monthly payment is $395.  Guess what program I qualify for with them?  A 5 year program with a monthly payment of $370.

Huh?

Am I missing something here?

So, bankruptcy is next.  I have an appointment the end of February to see an attorney to just get this done and over with.  (NOTE:  The filing fee for bankruptcy is $1875.)

So, if you happen to see or hear from me and I am riddled with anxiety, or so depressed I cannot get out of my bed, or I’m distant or just seem off – please know it’s because life is a lot right now.  It is literally costing me money to live – and I am going deeper in the hole every moment of every day.

Pretty grim right now for me, tbh.

If you happen to see me on Twitter and see my posting about my GoFundMe or my Teespring store, would you do me a solid and share then for me please?

Thank you.  Until next time.