The ups and downs of the life of a Chronically Ill person

Got some bad news today.  Found out my PCP, who I have been working with since 2011, is leaving her clinic and moving onward and upward.

She’s known me before diagnosis and has been utterly fantastic post-diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  I get it, though.  I have been through this before with others on my team, but it doesn’t get any easier!  If I was a regular person, this would just be par for the course:  OK, time to choose a new doctor.  But when you’re navigating life with 2 Rare Diseases, it’s a tad different.

I am sad.  Pretty darn sad.  So Mom treated me to sushi after the appointment.

Found out my results of my FNA biopsy of my thyroid bed from a few weeks ago.  NO DIAGNOSABLE SAMPLE WAS FOUND.  AGAIN.  I am so over this.  

I have decided that this issue is going to the back burner.  Maybe I’ll have another one in the Spring; who knows.  Right now there’s too much other stuff going on.

 

 

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. 💤

I’m always big on dates

Two years ago tomorrow, October 21, 2017, I had bariatric surgery that saved (at least part of) my life.

I’ll get to writing about that very soon.

Finally had the FNA in my thyroid bed a week ago Friday. EIGHT (8!) times my Doc. had to put that bloody needle in my neck. And DIG. A lot.

It was bloody freaking hell and I do not want to ever have another fine needle biopsy again. I accidentally took a bit more Xanax than I should have and the back office staff was kind of freaking out, BUT I HAD TO DO WHAT I HAD TO DO: and my lovely Xanax still wore off after the first needle stick. #sucks

Doc says results should be in in 10 days. I’m not lucky nor a betting woman, but if I were, I would place big money on black that there will yet again be NO diagnosable tissue.

I will let you know as soon as I do!


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As I write this early this morning, I have my next FNA on my thyroid. This issue has been going on for 12 months and we still do not have any answer on whether this (spot) is a lymph node, thyroid tissues, cancer regrowth, or what. My hunch is that it’s my thyroid growing back as I had my gigantic tonsils removed in the early 90’s and they are also growing back.

I have a driver. I will be sedated. This isn’t my first rodeo so I thankfully have some tips to help myself during this.

I’m not going to lie. It’s an ordeal. It’s more than just “shoving a needle in my haystack neck hoping to find the damn needle.” 🙂 The procedure isn’t for another 3 hours and I’ve been awake since 4 AM trying to mentally prepare for it.

I’m hungry. I’m tired. I should go clean my room. Happy Friday!

 

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.

I won’t do it

I have too much to deal with to do YOUR job. You work in the medical field. This is what you DO. Every damn day. Don’t ever expect me to do for you what you get paid your damn self to do.

I had another round of physical therapy recently. I felt it was going pretty well, but sadly the therapist left the location. He is in school and had more internships to complete in another state. 😥

He actually was more than just a physical therapist to me; he was very easy to open up to about my feelings with life with brain tumors as a whole. (But I realized something. I must deal with and overcome all this garbage crap with my head because what man will ever want to be with me and all this baggage I bring with me?) #ugh

So at our last appointment the front office staff had gone home for the day already. (?)

PT told me to call the next day to schedule my final appointments. BUT WHY.

That’s not my job.

I don’t work at that office.

IT IS NOT MY JOB TO CALL YOU AND SCHEDULE THE FINAL SESSIONS.

You know, it the REAL WORLD, the next morning when the office staff arrived in office, they COULD HAVE AND SHOULD HAVE checked the patients the day before to see that I DID NOT HAVE A FOLLOW UP APPOINTMENT SCHEDULED.

This is the main that pisses me off with people in the medical field. I wish I just could be a regular person again.

Here…

  • I don’t have to be brave.
  • I don’t have to be strong.
  • I am not alone.
  • I can be honest.
  • I can be myself.
  • I can scream.
  • I can yell.
  • I can cry.
  • I can be scared.
  • I can be myself. Truly and authentically me.

I am having another fine-needle biopsy this Friday.  Again.  On my neck.  Where I am not supposed to have a thyroid.  I road this route in 2003 and 2006; I am supposed to be done.  So what the hell is going on? I’m pissed this is still going on.  Next month will be an entire year dealing with this thyroid “regrowth” and between dumb-ass insurance companies dicking me around, making me jump through additional UNNECESSARY hoops, etc. etc. I still don’t have an answer as to what the freak is growing in my thyroid bed.

The system is vehemently broken, as I’ve said before.  And, I will say it again and again.

(Is it odd that I want it to be cancer or suspicious enough that they can just take “it” out?)

Give me another damn surgery so I don’t have to be worrying about thyroid cancer regrowth.

But guess what.

When you get a diagnosis of Cowden Syndrome worry comes with territory.

In these last 8 years I have learned that Cowden Syndrome equals worry.  There’s no way around it.

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Click here to see the shirt I created for just this exact moment.  Ironically enough, I created this when I was denied disability.  Yet how appropriate is it for me today!