Urgent

8:30 am tomorrow morning I have my urgent CT scan. I feel how I did 9 years ago during that week’s time between the brain tumor diagnosis and the first craniotomy.

Trying to read. Trying to distract. Trying to stay relaxed and as calm as possible.

May 3, 2020 a bit graphic

Day 3 of Brain Tumor Awareness month and I chose to share a picture from my v long recovery.

This photo was taken August 2011, about a week after my 2nd craniotomy. Not a pleasant sight.

May 2, 2020

Day 2 of Brain Tumor Awareness Month and I am 2 for 2!

I was thinking earlier about what I wanted to share today. I decided I would share a bit about where this blog began.

I began this blog the day after being diagnosed with a brain tumor. I knew nothing; nothing about what was ahead for me. Oh, man. I was so naive! I miss that Heather, to be honest. That Heather knew pain, sure. But she was so little then! ❤ I wish I could go back and tell that Heather I will never forget her. I wish I would have hugged her a bit longer. 😦

If you click here you can read my very first post. I am very thankful that I have those early days that I can look back on.

Have a good evening. Thank you for being here.

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Please don’t forget to visit my Bonfire store – click here! and consider buying your custom t-shirt today! Thanks! 🙂

Bookz

I traded these at a Little Free Library today! Although reading is pretty hard for me post-op, I’ve had a deep love for books and reading since grade school.

Stop it

I thankfully just avoided a panic attack. I’ve been through this for so many years but the anxiety just doesn’t stop.

At times my head (skull) itches. I’m sure the nerves healed after both brain surgeries in a weird way which causes the odd itchy places.

I was rubbing my usual itchy spots (right near the incision) just now and I swear I heard (felt) a type of crunchy sound. That’s new. That’s weird. Then it hit me. Hard.

I’m grateful I was home with my mom. I started the 5,4,3 thing (which I don’t know if I did it correctly) but it helped ease me down.

Nine years after brain surgeries and I’m still no better at accepting and coping with Lhermitte-duclos Disease.

Hope

I just finished my EEG and had one of the most spectacular technicians ever! She was awesome. Period. She is 100000000% in the right career field. She gave me hope that not all medical people suck!

While the test was rough (the flashing lights part was no good) she made it “less rough” (90’s R & B can make anything a whole lot better!) PLUS she listened to me.

Thank you Ms. P!

Post 1001 or what I remember from my black-out

You know, never in a million zillion years did I ever think I’d have brain tumors, let alone blacking out, hitting my head, and taking a ride in an ambulance! Yet here we are.

This incident was just a few days ago but it seems like yesterday. (A little back story: I have something wrong with my left thumb joint. For the last few months I have been feeling a lot of pain, and I mean a LOT of pain, and a “double-jointedness” on the joint right below my thumbnail. In other words, arthritis. – SIDE NOTE: I am reminded of a story of one of my little nephews. When he was a kid he called his Big Toe his “Thumb Toe”. Isn’t that the sweetest? ❤

Anyway, back to my story: It was around 4 am and I woke up to use the restroom and I always take my thyroid pill around this time. I remember opening the lid with my left hand and I got a shooting pain (I used the word excruciating) in my thumb and the next thing I remember I’m laying flat on my back on my bedroom floor. And I didn’t crumple like a little flower mind you; I hit the floor like a lead brick. I remember somehow getting to my bed and thinking to myself, “I should yell for Mom to come help me.”

The next thing I remember I am in the restroom trying to finish my business and I remember toilet tissue in my hand. Then, I am again crumpled on the floor, the back of my head is killing me, and my Mom is in my face screaming, “Heather! Are you OK? Heather! What happened?”

She said I stood in her bedroom doorway and told her, “Mom, I need your help” and I crumpled onto the floor and she heard the thud of my head against the wall. I’m not going to lie, I’m getting a good amount of anxiety as I am writing this. I want to share this with you and also to document my life today. When I am gone I want others to know how hard I tried, especially my nephews. I want to them to know how much I love them with a love that fills a thousand oceans to infinity. How they give me more joy and the strength to carry on. How hard I tried to be positive and never give up. How hard I tried not to be bitter about my lot in life.

 

I fell down or happy 1000th post

A few days ago I blacked out and hit my head on a wall in my house. Scared the bloody hell out of my mom; I’m still kinda in shock about what happened and I try not to think about it. I took an ambulance ride and had a bunch of tests in the ER including a CT scan on my head and a chest X-ray.
I was told by the doctor that everything came back “OK” and there didn’t seem to be any huge issues in my head. So, that’s great news.

Interestingly enough I had an appointment already thankfully scheduled with my neurologist yesterday. He wants to do an EEG and I have my next brain scan, #scanxiety, in December and he was fine with waiting that long to get a scan.  

I’m terrified it’s going to happen again at any moment.

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. 💤