Socks on socks on socks

For the last 6 months or so I have noticed my toes feeling ice cold. As if I have somehow dipped them into a bucket of snow.

Brought this up to the neurologist on last visit. He ordered a nerve test and results were “normal”. (I always use that term loosely because Cowden Syndrome and because Lhermitte-duclos Disease.)

Neuro told me at last visit to let him know if the coldness increases or changes directions.

It has.

This shit scares me to death. But do you know why it scares me so much? I try so hard to convince myself – AND OTHERS – that I am normal.

I feel like a fraud on most days that end in Y and I fear the day my world comes crashing down around me. And as my body continues to change I am just dreading that day when it finally fully betrays me and I cannot fake out the “normalcy” any longer.

Er, wait.

I guess that’s already happened, eh? 😑

I’m just going to bed and adding my additional pair of socks. Praying for sleep and that the Trazodone works its magic tonight.

Goodnight. 💤

Except it.

  1. You have two brain tumors.
  2. You have a rare genetic condition called Cowden Syndrome.
  3. You had 2 brain surgeries.
  4. You had a prophylactic hysterectomy.
  5. You had thyroid cancer and had 2 surgeries as well.
  6. Once returning to work after both brain surgeries, you were bullied and forced to quit.
  7. You now have some cognitive issues.
  8. You applied for Disability.
  9. You were denied Disability.
  10. You tried to raise money to survive.
  11. You were forced to file bankruptcy.

But just except it, Heather. Then you’ll be fine.

Over-freaking-whelmed

I’m feeling very overwhelmed. My anxiety is getting out of control and I even took an Ativan last night. That wasn’t the best decision as I’ve been awake since 2:15 AM. #fail

I’m not over the resentment and bitter anger I have towards the Disability “Judge” who denied my claim for disability.  I wish I could remember what he looked like and I wish I could run into him on the street.  I would give him a piece of my mind.

Managing a Rare Disease life is a full time job, obvi.  It’s quite difficult for me to keep my head above water, to remember when appointment/scan is coming up next, etc. etc.  Now, add to THAT stress the pressure of a full-time job, too.  Yes, I know how incredibly blessed I am to have been hired.  Yes, I know how incredibly lucky and grateful I am to have a place to go earn money.  Yes, I know all of this. Regardless of my knowledge it’s still very difficult for me. I try to put on a brave face, but I’m on the verge of a breakdown most days.

I try to make the conscious decision each day NOT to think of the brain tumors.  I think about my cats, my family, my car maintenance, finding a good book to read, etc.

But, I won’t lie and say I do it or that it’s easy.  These damn tumors have taken my confidence, (what little I had anyway.)

Walking into the job each day I feel like a fraud.  I feel like people are looking at me and judging me accordingly.  Granted, I haven’t told anyone (besides a select few) about my medical status because I know, I just know, that it would be used against me and I’d lose this job.

Now that I’ve come this far – lost other insurance, procedures got denied, had to get a new doctor, my other doctors weren’t covered for me to see, blah blah blah. I have to see this through ’til I’m dead.

Watched some news.  Going to exercise. Need to make a plan besides writing and reading blog posts all day.  Happy Labor Day!

Monday Motivation

I got up early today; early for me that is.  Set my alarm for 6:30 AM and I actually got up!  Put on some shoes, drank some water, kinda brushed my hair, and set out for a morning walk.  Put in a good 25 minutes so I call that a win!

I’ve noticed lately that I seem to write with no regularity whatsoever.  I almost wrote, “with no purpose”, but I realized that’s not true.   My purpose is to talk about Rare Disease.  To share about what life with brain tumors is like.  Before all this garbage, I (obvi) didn’t know anyone with a brain tumor.  But now, dear reader, you CAN say you know someone with a brain tumor: ME!  I’m going to make it a goal to write about my regular, boring, life when brain tumors aren’t on my schedule.  But, wait.  These tumors in my cerebellum are always on my schedule; whether I address them or not remains to be seen each day.  🙂

I started PT again this afternoon.  I’m excited (?) to see how it goes this time.

I am thankful I started this blog all those many years ago.  This has been such a great tool for me!

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PS. What happened to the edit/spell check function on here?

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 💔🙏🏻

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?

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.

#GoGrayInMay

Do you know that this month is Brain Tumor Awareness Month?

Do you have your gear yet? (hint hint!)

If you follow me on Instagram you’ll know I promoted a post to (hopefully) get some traffic and potential customers friends who would help me in my advocacy this month.  If you’re new here, I am living with 2 rare brain tumors in my cerebellum called Gangliocytoma.

Take a look at this link and if you feel so inclined (please!) to purchase a shirt I will be donating 20% of the proceeds to the National Brain Tumor Society.  I initially created these shirts to advocate but also to help me with my daily living expenses.