Cowden's Syndrome, Health

Learning to say no

This week I had to see a new oncologist. Since I got new insurance last year it’s been utter nightmare trying to establish my CONTINUED care. Thinking about where I am 9 years post diagnosis, thankfully, I guess I don’t really need one right now. That’s just how my care was initially set up. I had/have my PCP and my many specialists, but also an oncologist who managed/s all my scans and procedures. OK anyway…

Saw a new one. This was such a nightmare appointment and I’m shocked (at myself) that I didn’t walk out of the appointment. I was on the edge, believe me. Now, I’m not totally devoid of human emotion and I do try to believe the best in people. However, I know what I want, what I need, and what I am OK with. Let me just point out my issues/concerns with this “physician”:

  • She reeked of coffee. I mean REEKED. The smell was oozing from her pores, I swear. I had to move my chair away from her it was that bad!
  • Her accent was so thick I had a lot of trouble understanding her. A lot of trouble.
  • She had printed out a list of screening recommendations for Cowden Syndrome. (I have this list myself). And she began to read THE ENTIRE PRINTOUT TO ME. Sentence by sentence. I politely interjected and told her I had this exact paper and was very aware of the guidelines.
  • She didn’t freaking like that one bit! I have a voice. I’ll use it just you watch. No one has created a treatment so I will decide what’s OK and what’s not. The guidelines say “annual mammography”. OK but I’m not waiting 12 months for a breast check! No way in hell. My previous oncologist set up that I was getting checked every 3 months. So that when (if) I get breast cancer it will be caught very soon. Makes sense as a good plan right? Oh hell no, this doc wasn’t having that. And I told her, “I AM NOT OK WITH EVERY YEAR GETTING A CHECK.”
  • Everything went downhill from there. I’m getting ticked off again just writing this post. I’ll finish up this weekend.
  • For everyone reading this: please dig deep and find your voice! And once you do, hold onto it with all your might!
Cowden's Syndrome, Health

Learning to say no

This week I had to see a new oncologist. Since I got new insurance last year it’s been utter nightmare trying to establish my CONTINUED care. Thinking about where I am 9 years post diagnosis, thankfully, I guess I don’t really need one right now. That’s just how my care was initially set up. I had/have my PCP and my many specialists, but also an oncologist who managed/s all my scans and procedures. OK anyway…

Saw a new one. This was such a nightmare appointment and I’m shocked (at myself) that I didn’t walk out of the appointment. I was on the edge, believe me. Now, I’m not totally devoid of human emotion and I do try to believe the best in people. However, I know what I want, what I need, and what I am OK with. Let me just point out my issues/concerns with this “physician”:

  • She reeked of coffee. I mean REEKED. The smell was oozing from her pores, I swear. I had to move my chair away from her it was that bad!
  • Her accent was so thick I had a lot of trouble understanding her. A lot of trouble.
  • She had printed out a list of screening recommendations for Cowden Syndrome. (I have this list myself). And she began to read THE ENTIRE PRINTOUT TO ME. Sentence by sentence. I politely interjected and told her I had this exact paper and was very aware of the guidelines.
  • She didn’t freaking like that one bit! I have a voice. I’ll use it just you watch. No one has created a treatment so I will decide what’s OK and what’s not. The guidelines say “annual mammography”. OK but I’m not waiting 12 months for a breast check! No way in hell. My previous oncologist set up that I was getting checked every 3 months. So that when (if) I get breast cancer it will be caught very soon. Makes sense as a good plan right? Oh hell no, this doc wasn’t having that. And I told her, “I AM NOT OK WITH EVERY YEAR GETTING A CHECK.”
  • Everything went downhill from there. I’m getting ticked off again just writing this post. I’ll finish up this weekend.
  • For everyone reading this: please dig deep and find your voice! And once you do, hold onto it with all your might!
Cowden's Syndrome, Health, Lhermitte-duclos Disease, Photography

Rare Disease Day 2/29/2020

Cowden's Syndrome, Health, Lhermitte-duclos Disease, Photography

It’s almost the Day! #WRDD2020

Cowden's Syndrome, Health, Lhermitte-duclos Disease

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!

Cowden's Syndrome, Health, Lhermitte-duclos Disease

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!

Cowden's Syndrome, Health, Lhermitte-duclos Disease

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.
PPS don't forget to follow me on Twitter and Insta!
Cowden's Syndrome, Health, Lhermitte-duclos Disease

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.

 

 

Health, Lhermitte-duclos Disease, Photography

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. 💤

Cowden's Syndrome, Health

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!