Hey guys. It’s been a long while but I’m still here. I think, naively of course, that since I have now “graduated” to brain scans every 2 years, I am home free! Of course, that’s not true and in just a month or so time it’s time for my colonoscopy and EGD. Which, if you remember from previous posts, they suck balls.
I am focusing on a lot of self-care lately, which has included hot baths, books, and short “staycations” with my Mom. Talk soon! ❤
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!
For Pete’s sake, I have Cowden Syndrome and Lhermitte-duclos Disease and can’t think of anything to write about today? Eeeeeesh, that’s weird. I just spent 20 minutes looking up “Blog post ideas” and got sucked into the black hole of competitors and marketing? Baha. No clue.
I have some news that I am debating about sharing here. You guys are the greatest and I know you’ll be supportive and happy for me! ❤
I decided to join a few books clubs and I am very excited to go to them. I was a huge reader before diagnosis, but then I put it away for a while because it became so challenging for me; and in fact it still is. But, I know reading is good for my brain so I am thankful to have found my passion for it again.
I ordered the books online and can’t wait for them to arrive. I’ll share them with you soon.
Fall is just around the corner; I cannot wait. Which then leads to Christmas time which is brain scan time. Blech. Saw the oncologist a few weeks ago and have a mammogram and kidney scan coming up quick. I wish I could tell you I am a pro now at these appointments, but haha, nope.
I do not want to ignore my feelings, but I then wonder am I doing myself a dis-service by not writing about them? I can’t will them away; my thoughts or what I’m experiencing. It’s a bitter pill for me to swallow as I am acutely aware of how many walls I am running into because of my wonky balance issues.
Soon enough I will write about the current brain tumor/surgery/symptoms I am experiencing. Not tonight though.
Oh one more thing. Have you watched this show? I love it so much I cannot stand it!
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!
How appropriate today’s daily prompt is! As I am pondering this early Saturday morning a few things keep going over in my mind:
Life is messy. It just is.
What matters is what do you do with it, right? I know I say that often, but I want to keep reminding myself that although my (medical) life is out of control, and that directly affects all other areas of my life, I am still here! I can and should still exert control (my choices, rather) on what I do and do not want to do with my life. My bedroom is a hot mess. My closet is a hot mess. My hair is a hot mess. My car is a hot mess. I guess I just have embraced the messy because I feel that’s a representation of my life. (!!!!!!!!)
Gosh, who knew that blogging could be such great therapy, LOL. That’s exactly it. I’ve been absorbed into the mess that is my life and cannot find a way out of it.
YET, I do have a choice!
Even if it’s as simple as reading a good book. Or listening to music I enjoy. Or cleaning out the trunk of my car.
Cowden Syndrome and Lhermitte-duclos Disease robbed me of the life I hoped and dreamed to have: Mother, wife, blah blah blah. When you have no dreams or hopes and feel your life is a mess…ew that’s just too much for any one person to handle.
I am reminded I only have to “handle” today. I will finish this blog post and and start on my laundry. Then, I will make sure I make time to pick up this book that I have been trying to finish for years!
Thank you for being here! ❤
What are you doing today?