#HugeNews

I saw a Neurologist yesterday!

I won’t bore you with the details of why I stopped seeing one earlier, blah blah blah.  Good news is I now have one.

I’m kind of processing everything still – all I have really ever wanted is for a Neuro to “have eyes on me” as my brain tumor (and brain surgeries) symptoms are progressing.

Granted, adding another doctor to my team may seem kind of odd, but this works.  🙂 I have said numerous times to numerous doctors that I don’t expect anything to change. I know there are no miracle drugs to help me manage life now and I sure as hell AM NOT having another brain surgery.  Ever

Until next time!

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Another year in the books AKA Stable 2018!

Waiting to see my Neurosurgeon to review my brain scan. Results are in: both tumors are stable and see ya in a year!

#SocksForScanxiety

I’ve made that my thing over the years: Every time I have a brain scan I treat myself to new fun socks!

This year’s pair is an early Christmas gift from one of my BFFs.

(Can’t sleep. Stalling. Putting it off.)

Tomorrow will be here before I know it. Come what may!

The Struggle Bus rolls along

I went an entire month without writing.  Buh-bye November!  See ya wouldn’t want to be ya!

I am still struggling:  Don’t have too much to update otherwise.

  1. Finally had the fine needle biopsy on my (empty) thyroid bed last week.  This was my 2nd one, so I was (properly, or so I thought) sedated and knew what to expect.  Nope.  No.  I was wrong and I don’t win.  The only positive thing was that I knew this technician, but not the doctor, and I think the tech (tried) to do me a solid by “talking” about things with the doctor – that I was able to pick up (if you get my drift….) I won’t go to the bad place here yet, because that’s been happening enough in my mind for the last 10 days already.  I don’t have a diagnosis yet, and I can speculate til the end of time because while I do know some things, I must wait to hear from the endocrinologist.
  2. Something is terribly wrong with my shoulders:  I speculate rotator cuff issues?  One of my doctors called in some pain medicine for me, and I will be honest with y’all here, Tramadol isn’t all that bad! I told my Mom a few nights ago that I’d almost rather have brain surgery again than this shoulder pain.  For real y’all.  No fun.
  3. Sometimes it’s quite overwhelming trying to manage my schedule.  In the next few weeks I have to deal with all the above, plus my brain scan and neurosurgeon appointment!

No words of wisdom today.  No positivity or self-care mumbo jumbo.  Writing.  Watching Ghost Adventures.  Water and early to bed.

Hi

It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.

I’m struggling. Hard.

And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?

I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.

Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.

Had the thyroid MRI last week and waiting to hear.

Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.

🙄🤮

some days can suck it

You know what?  Some days just SUCK.  Plain and simple.  I’m dizzy.  Nauseous.  Bored.  Angry at myself.  Frustrated.  Worried.  And on and on…I kinda only realized TODAY that some days are just going to SUCK.  And, I did quite a bit yesterday, so maybe that could be why today blows?

Doesn’t mean I’m doing it wrong.  Or that I am bad or less than.  That it’s my fault I feel like garbage. Or that the brain tumors are growing or that my elevated liver enzymes mean anything BAD.

This is just part of my “new normal” – I’m going to feel like crap all most days.  I just am.  Period.  I guess the sooner I get on board with this the better I’ll be.

At least, I should start convincing myself of that.

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 showI love it so much I cannot stand it!

 

Past Present Future

I long for the day when July 27 will be just like any other day.

Not today. I’m not there yet.


 

 

 

 

Remember

I remember.

So today I did some good stuff:

Facial.

Cupcake.

Massage.

July 4 2018 AKA My Movie Night

Hello.  I am home watching one of the best movies, ever along with this show.  I am forever #TeamShane!

And, I’m wearing ear plugs.

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I wonder if any other people living with brain tumors have increased hearing sensitivity.

My anxiety is through the roof as I’m already anticipating the gun shots fireworks in a few hours. Taking an Ativan and calling it an early night!