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! 🙂

Quarantine Thoughts

I don’t have anything witty to write now. As I’m sure you’ve read numerous times: We are living in unprecedented times. There is no doubt of this.

I could list all the Netflix documentaries and the app exclusives for 90 Day Fiance on TLC I have watched. But, I want to think about this moment in history differently.

Yes, my specialist doctor appointments have been canceled postponed. I expected as much, but I do have a wellness checkup (my term) with my new PCP in a couple of weeks. I was am concerned about this appointment being canceled, although I was reassured this week that it would not be. If you’re new here, I used to have an oncologist who managed all my screenings for Cowden Syndrome. Yet with new insurance I had to see another one, and I wrote about that in a previous post because it was an absolute travesty when I saw the “new” one. (You can read about it here.)

Anyway, I have to manage all this medical stuff now since I have no oncologist to help me, and what’s next on the agenda is a breast exam. While my medical status overwhelms me on most days of the week; I am so happy to realize that I haven’t freaked out about anything health related since this event began.

This makes me really happy. Happy to write it and happy to acknowledge it. 🙂

Blog Housekeeping

Does anyone know how I can make my Wordless Wednesday photos the same size?

I thought that I could choose MED/LG/JUMBO or some such thing…but now I can’t find that option in the media tab/folder?

Thanks in advance. My OCD is on fire with my photos all different sizes. #Blergh

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?

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. ❤

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.

 

 

What do you do when you can’t…?

For Pete’s sake, I have Cowden Syndrome and Lhermitte-duclos Disease and can’t think of anything to write about today?  Eeeeeesh, that’s weird.  I just spent 20 minutes looking up “Blog post ideas” and got sucked into the black hole of competitors and marketing?  Baha.  No clue.

I have some news that I am debating about sharing here.  You guys are the greatest and I know you’ll be supportive and happy for me! ❤

I decided to join a few books clubs and I am very excited to go to them.  I was a huge reader before diagnosis, but then I put it away for a while because it became so challenging for me; and in fact it still is.  But, I know reading is good for my brain so I am thankful to have found my passion for it again.

I ordered the books online and can’t wait for them to arrive.  I’ll share them with you soon.

Fall is just around the corner; I cannot wait.  Which then leads to Christmas time which is brain scan time.  Blech.  Saw the oncologist a few weeks ago and have a mammogram and kidney scan coming up quick.  I wish I could tell you I am a pro now at these appointments, but haha, nope.

I do not want to ignore my feelings, but I then wonder am I doing myself a dis-service by not writing about them? I can’t will them away; my thoughts or what I’m experiencing.  It’s a bitter pill for me to swallow as I am acutely aware of how many walls I am running into because of my wonky balance issues.

Soon enough I will write about the current brain tumor/surgery/symptoms I am experiencing.  Not tonight though.

Oh one more thing.  Have you watched this show?  I love it so much I cannot stand it!

 

Complaining changes nothing

And of course, I get that.  But, I don’t view my blog posts as complaining; I’m documenting.

My biggest fear is dying alone and I suppose that this blog helps me feel safe secure that my life has some value and since everything is forever on the Internet, haha, I won’t be forgotten.

Being single and alone, no children too, is weighing on me heavily as of late.

My brain surgery/tumors are causing me more grief, too.

I have run into walls more frequently, about fallen over several times, and since it’s summer that means it’s time for daily headaches.  Oh, joy. 😦

So, writing here about my life’s struggles helps me to feel validated.  I know I am not alone in my brain tumor life (or my Cowden Syndrome life for that matter.)

It is what it is.

I’m scared and anxious today.

Thank you for being here.

Daily Prompt [Flaunt]

I will forever think of this when I hear or read the word flaunt.

 

Daily Prompt [Sleeve] – AND THE EVER-LOVING SYSTEM IS BROKEN!

Hello.  My name is Heather and I would like to welcome you to my blog.  Today’s post is full of anger and bitterness; thank you for joining me!  🙂

I have no connection to the daily prompt except that sleeve reminds me of peeved.  Pissed.  Angry.  Furious.  Frustrated.  MAD.  Irate.  And, we will continue from here:

I have 2 brain tumors and a Rare Disease called Cowden Syndrome, which you may or may not know.  What concerns me more than CS is the brain tumors I have, called Lhermitte-duclos Disease, or Gangliocytoma.  I’ve already had 2 crainiotomies and am currently experiencing more symptoms that are annoying and down right scary.  A few years ago I applied for disability, appealed, had an “advocate” (and I use this term loosely because I got snowed and he is a terrible excuse of a man) and after almost 4 years of the entire process the Judge finally denied me.  Period.  End of story.  Do not pass go and do not collect 200 dollars.  In part, he denied me because I was “calm and collected” in his courtroom and after my hysterectomy in 2013 I told a doctor on my team “I wanted to go back to work.”  Ugh, thinking about this again makes me nauseous and I want to spit fire.

Since the outcome, and well actually since I started to feel any semblance of a normal life (probably around 2012) I have worked my ass off trying to find a job(s) so that I can survive.  Do you know how expensive it is to LIVE though?  If you have a job, be grateful.  If you have money, be grateful.  Be grateful for what you have.

Anyway, a few months ago I found another part-time job that is flexible and they understand my health issues, the brain tumors, the good days and bad days, the daily headaches, etc.  I am very lucky to have found this job.  And, guess what?  I made “too much money” in April and May and will lose my state medical coverage the end of this month.  WHAT IS WRONG WITH THIS PICTURE?!

And as I was running errands earlier today I ran across the booths offering FREE CELL PHONES TO ANYONE (who qualifies, whatever).  WHAT ABOUT ME?  WHY do I fall through the cracks?  I will not debate immigration concerns, illegal or legal, because that’s not my job nor is that my concern today.  MY CONCERN IS ME.  MY LIFE.  MY FUTURE.  I AM AN AMERICAN CITIZEN AND GETTING DIAGNOSED WITH 2 BRAIN TUMORS HAS DESTROYED MY LIFE.  WHY AREN’T I AS IMPORTANT AS OTHER PEOPLE?????????????????????????????????????????????????????????????????????????????????????

May is brain tumor awareness month.  Brain tumors are evil bastards that ruin lives.  Mine, included.  Please visit these links to find ways you can help.  Thank you ❤

National Brain Tumor Society

American Brain Tumor Association

Global Genes