Life = change = life

Ugh.  I saw my new primary doctor yesterday.  Such a surreal experience.  Of course I know that my original doctors (since diagnosis) can’t be with me forever but waaahhh.  I miss my olddddd doctor.  She knew me.  It was easy.  And, to be honest, in stating my history for this doctor I didn’t quite realize how much of a hot mess I actually am.  🙂 I am a lot.

Currently, I don’t have an oncologist which really sucks balls.  My previous oncologist took the burden from my shoulders and was responsible for managing all of my procedures: mainly coordinating my colonoscopies, kidney scans, etc.  But since I have different insurance now (which also sucks eggs terribly, but that’s for another post) the “powers-that-be” will not authorize an oncologist because “I do not have cancer”.  Welp, hey folks let me tell you something:  I’m not trying to get cancer so can you get on board to help me CATCH it before it strikes?!

Waiting to hear about my EEG from a few weeks ago.  Just followed up with the Neuro so we’ll see.  I have learned that not hearing from the doctor, or the whole “no news is good news thing” doesn’t apply all the time with Cowden Syndrome and Lhermitte-duclos Disease.

I know things take time.  Blah blah. I get it.

It’s just a lot.  It’s a whole dang lot and I’m not sure how I’m doing it.

How are you, though?  Read any good books lately?  🙂  I’d love some recommendations.

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PS. Don’t forget to follow me on Instagram!

Tuck and roll

Since being diagnosed with Lhermitte-duclos Disease and Cowden Syndrome I have met so many doctors. (It’s now par for the course.)

There have been 2 doctors that have changed me for the better. They have helped me find my voice I never knew I had! I’ll tell you what, 8 years later – since diagnosis – if I don’t care for XY or Z, I will tell you and your entire office staff. Managers too! 🤗

Anyway, I worked with both doctors for 8 years, which is so interesting to me. Just the timing of it all. Dr. F I saw until 2011 and Dr. B ended today.

I could go on and on about today’s doctor, which I may do in another post, but tonight I’ll just say that I had to say goodbye to her today. She’s moving on; and to be honest the future of healthcare, MY healthcare, scares that hell out of me. If I think things are rough for me to manage and navigate now – imagine 20 years from now? Gah.

But moving on to my point of this blog post, she thanked ME. For allowing her into my life. Huh?!

Blergh I tried to be strong but she killed me there. I feel like such a burden to most people I know: and for HER to thank ME just has me stunned. 😳

There are people who should and SHOULD NOT be in the medical field: and she is one of the few people who are in the right career. Her future patients will be beyond blessed to have her! 💕

I feel sad and kinda like a part of me is now missing. Just gotta be. Sad. Tuck and roll baby. Tuck and roll!

Almost a month’s time

I can’t believe it was about a month ago that I passed out and hit my head. It seems like it happened yesterday morning. I haven’t slept in my bed for the past several weeks because sadly I get pretty moderate anxiety at night thinking it’s going to happen again.

Trying to get the EEG scheduled; frustrating as hell. Last week I also spent 35 minutes on the phone (on hold) trying to schedule an appointment for podiatry and to see a hand specialist: and after the 35 minutes I wasted I still didn’t have an appointment scheduled for either!

Positive note: I found 2 Christmas CD’s at a thrift store and am in the process of trying to get the music on my phone. One CD synced OK but the other one will not. Going to try again in the morning.
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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.

 

 

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!


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.

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!

Over-freaking-whelmed

I’m feeling very overwhelmed. My anxiety is getting out of control and I even took an Ativan last night. That wasn’t the best decision as I’ve been awake since 2:15 AM. #fail

I’m not over the resentment and bitter anger I have towards the Disability “Judge” who denied my claim for disability.  I wish I could remember what he looked like and I wish I could run into him on the street.  I would give him a piece of my mind.

Managing a Rare Disease life is a full time job, obvi.  It’s quite difficult for me to keep my head above water, to remember when appointment/scan is coming up next, etc. etc.  Now, add to THAT stress the pressure of a full-time job, too.  Yes, I know how incredibly blessed I am to have been hired.  Yes, I know how incredibly lucky and grateful I am to have a place to go earn money.  Yes, I know all of this. Regardless of my knowledge it’s still very difficult for me. I try to put on a brave face, but I’m on the verge of a breakdown most days.

I try to make the conscious decision each day NOT to think of the brain tumors.  I think about my cats, my family, my car maintenance, finding a good book to read, etc.

But, I won’t lie and say I do it or that it’s easy.  These damn tumors have taken my confidence, (what little I had anyway.)

Walking into the job each day I feel like a fraud.  I feel like people are looking at me and judging me accordingly.  Granted, I haven’t told anyone (besides a select few) about my medical status because I know, I just know, that it would be used against me and I’d lose this job.

Now that I’ve come this far – lost other insurance, procedures got denied, had to get a new doctor, my other doctors weren’t covered for me to see, blah blah blah. I have to see this through ’til I’m dead.

Watched some news.  Going to exercise. Need to make a plan besides writing and reading blog posts all day.  Happy Labor Day!

8 years old

Every year when this date pops up it brings with it such mixed feelings.

I was terrified I was going to die.

I was terrified I would be different. (I know I am different today; and in many areas too! It’s a moment by moment struggle towards acceptance of this fact.)

Different isn’t wrong I suppose.

Thank you to all my family and friends who continue to support me every day! And to those who just smile with me when my words get stuck or I repeat the same things.

I know it. I see it. I feel it. It frustrates me to no end that these things happen to me now; alas this is where I am at today.

7/18/11 💔🙏🏻