Mumbo Jumbo

Life is happening very quickly.

Usually this overwhelms me to no end.

Tonight I find I need to write a bit and then get to bed earli(er) than usual.

I have had a bunch of appointments these last 2 months and I find myself struggling greatly to keep it all straight. Between labs with my endocrinologist and a “spot” in my thyroid bed that we STILL don’t have a definitive answer on what it is…to reviewing my EEG with neurologist and MRI with my neurosurgeon. I told my mom last week that it’s really good I didn’t suffer (more) brain/cognitive issues post brain surgeries because SHE would have to be the one managing all these appointments and scans and results!

It’s a whole lot.

Sometimes I just need to get on here and just say that.

Cowden Syndrome is a lot.

Lhermitte-duclos is a whole effing of a lot.

I know there’s no handbook or manual to manage Chronic Illnesses but imagine how much simpler life would be if there were one!

What would you include in your book? I think I would be sure to include watching a WHOLE lot of 90 Day Fiance! (I’m kinda obsessed, tbh). 🙂

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.

#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!

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!

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.

Daily Prompt [Captivating]

I used to watch a lot of movies and I used to be a very avid reader.

Since my brain surgeries those hobbies have gotten pushed aside.

BUT, I just saw Coco and am currently reading Lightning and they are two of the most captivating movies and books (respectively) I’ve ever seen!

Daily Prompt [Sympathize]

I think many people get these words confused:  sympathize and empathize.  Or maybe I’m the one who does?  What do you think of when you see the word sympathy?  I feel sadness.  Loneliness.  It has such a bad connotation for me.

I would (safely) assume that many people felt sympathy for me when I got diagnosed with the brain tumors.  And Cowden Syndrome.  But now that things have “passed”, I feel forgotten.  I crave empathy so much.  I feel guilty when I “complain” about my lot in life now, but you know what?  This is my blog.  This is my safe space.  I am not complaining.  I am processing.  I am explaining.  I am working on not letting my feelings eat me up inside and making me sicker than I already am.  I will write everything here that I need to.  Period.

Not one single person (except maybe a certain one) gives a rip about what I am enduring now.  OK, OK.  I get it though.  We are all struggling.  Everyone has something.  And, these brain tumors and Rare Disease are mine alone.  But, when I get overwhelmed (as I did yesterday) – to whom do I turn?  Strangers on the Internet who actually seem to care about me more than my “real life” friends?  No one wants to hear it.  No one now even empathizes with me and the financial and emotional duress I am under every single day.  As I’ve mentioned before, some days I am able to work – on-call.  My brain cannot endure working 2 days in a row.  There is so much sensory stimulation and information that my brain is trying to process that after 4 hours, I am done.  My brain is done.  My entire body is done.  I came home right after work and was on the verge of a panic attack.  I took a Xanax and slept for 2 hours.  I am overrun with stress and anxiety, and I am afraid that the more I must “push” myself (working) – I will make my brain worse.  Or make the brain tumors grow.  Do you know what I mean?  I just felt like yesterday I was going to break.  I wanted to break.  I wanted all the pain to stop.  I tweeted that if this was all my life has in store for me, even if I live the next 20 years, I think I will reconsider.

I fear I will be remembered as a statistic of brain tumors instead of as a human being.  That’s one of my greatest fears.  That, and dying alone.

 

Daily Prompt [Miraculous]

While I get caught in some deep depression most days, I know there are many miracles in my life.  I could dedicate an entire blog to them.  However, not today.  I want to focus on my healing since my brain surgeries.  I know it is nothing short of miraculous that I am alive today and able to walk.

It’s about that time

Tomorrow morning I have my next brain scan.

Part of me feels like I just had one yesterday, and the other part of me feels like it was 10 years ago when I last had one.  Such mixed feelings!

It doesn’t get any easier; it’s just different now.

On a walk

I’m trying to kick up my exercise again, because surgery last month put a wrench in things.

Thankfully, crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)

I felt like a normal person!  Albeit, for about 15 minutes.  But, still I’ll take it.

Because then I remembered I have my brain scan next month because gangliocytoma.  And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.

I guess this is part of what life entails, right?  Little moments of breathing in between the big stuff. 

Or in my case, the big brain stuff.