-
- Another pic found in my draft folder from 2017 🙂
hope
Checking in for hope
I am probably going to be writing more lately. I mean, I kept this blog going all these years as a tool to help me process my emotions. In case it wasn’t clear, I am greatly struggling right now. People are losing their minds. People are judging those they don’t know. People are being cruel. People are forgetting we came to this Earth with our God-given agency. People are trying to get in my business. People are bullying me because I choose different than they do. People are horrific (especially those on the Twitter). I am not coping well with this. I cannot work. I cannot eat. I feel like something is really wrong with me. I mean, there is something wrong with my mind. I cannot detach from this because people are coming – for – me and it’s now affecting my career. I beg of you, wherever you land on the v a (( i n e…….please check yourself if you’re contributing to the divide in our nation.
Pray for the world
This isn’t OK. What’s happening in the world is terrifying. People are losing their minds. I am not a second class citizen for using my God-given agency. I am losing my wits about me and that is so scary to me. I can’t work. I can’t sleep. My anxiety is running at 100. I can’t continue. I can’t function.
I implore you to look at yourself closely: if you support removing a person’s right to choose for themselves, you are furthering the divide in this country.
Dear Lord, please help and protect us. If people continue to treat others in this disgusting manner, what will ever happen to us? This nightmare will never end and I need Your help to endure this. Is there Light at the end? Is there a way out?
My body my choice. Until it isn’t.
Sneaky peak
Checking in
Hey friends: I am still here! It’s been a while, and thought I’d catch up quickly this evening.
- I had “surgery” on my thumb this week. 5 stitches for my trigger finger. Blergh. Not fun in the least little bit.
- I had my mammo last week, because you know, Cowden Syndrome and high-risk breast cancer risk. It was “normal”! #winning
- Since I just got my mammo I can now try to sort out my screening timeline again since Corona jacked *everything up. Basically, someone is getting to second base with me every 3 months.
- What are you watching lately? I am a relatively new fan of BB (Go Ian!) and have been watching since #BB16. Still into every single version of #90DayFiance, and just finished another Joe Exotic thing. I liked this one the most as it followed up on some of the Big Cats Joe abused. I am now a follower and newest sponsor of one of their residents. Check out the sanctuary here!
- Trying my hardest to keep my hope and head above water. How are you doing in the time of Corona?
Urgent
8:30 am tomorrow morning I have my urgent CT scan. I feel how I did 9 years ago during that week’s time between the brain tumor diagnosis and the first craniotomy.
Trying to read. Trying to distract. Trying to stay relaxed and as calm as possible.
Rare Disease Days of Yore
LOL, I don’t know. 🙂
So, what was it about this RDD that was different? Why didn’t I feel as empowered as years past? Why didn’t I find something to do? Like in 2015 when I organized a fundraiser at a local gym? Gosh, I wish I knew. I don’t want to lose any steam ever on being a voice for Cowden Syndrome and Lhermitte-duclos Disease. But what gives? I really need to try to figure that out.
I have a hunch but will do some deeper pondering about it.
Yesterday I spent a very lazy day at home. My family was here, and we were watching old VHS movies from my high school days (very surreal!). I found myself just doing what I could to stay present. Remembering what I could from high school. Seeing and hearing my Dad on a video was such a shock and joyful moment at once. (He’s passed away)…
Even as I am writing this, I realize (finally?) that any day can be Rare Disease Day and I have the control! I suppose one of the things I am grateful for oddly enough post-diagnosis is that I have found my voice to advocate for myself. I never knew I needed it; but here we are and I CAN DO IT.
I didn’t think about anything health-related yesterday which is pretty damn awesome in my book. No brain surgery or hysterectomy memories, no “day-dreaming” of what my life will never be.
I just was.
With my family.
Safe.
And, I guess I couldn’t hope for much more than that.
Happy Sunday to you and yours.
Rare Disease Day 2/29/2020
It’s almost the Day! #WRDD2020
Hope
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!
hopeforheather 