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.
PS. Don’t forget to follow me on Instagram!
I just finished my EEG and had one of the most spectacular technicians ever! She was awesome. Period. She is 100000000% in the right career field. She gave me hope that not all medical people suck!
While the test was rough (the flashing lights part was no good) she made it “less rough” (90’s R & B can make anything a whole lot better!) PLUS she listened to me.
Thank you Ms. P!
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!
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.
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.
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.
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.
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.
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.
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.