There are several moments I wish I could recreate: my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.
I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.
To be honest, I hope that my blog will help to educate (to anyone who will listen) about Cowden Syndrome and Lhermitte-duclos Disease. Have you ever heard of Rare Diseases?
I began this blog Day 1, or rather Day 2; the day after I was diagnosed with a 5 cm. brain tumor in my cerebellum. 6 years later and I still don’t have the foggiest idea what I am doing. 🙂
But, I’m trying. Thank you for hanging on with me!
PS: Please check out my Teespring storefront while you’re here!
What other choice did I have? I couldn’t lay down and give up. I had to continue forward. But, when people told me, “Oh Heather, you’re so strong. I couldn’t do what you’re doing.” – I wanted to knock their block off!
It’s recovering from freaking brain surgery people! You do what you have to do in order to not die. You would have done the same damn “thing”.
PS: Don’t forget to check out my Teespring storefront!
Part of me feels like I inhabit only doctor offices and hospital rooms. Because Rare Disease. (A virtual contact of mine said today, “It kind of feels like you’re going to the mechanic.”)
In actuality though I have my room; my own private escape from all things medical. What can I do to make it more mine: I have dark curtains and a few stuffed animals and books. Always books. But that’s it. I want to make it more homey, inviting, etc.
PS – Please check out my Teespring storefront while you are here. Thank you! ❤
What else would you recommend for me? EDIT: This photo is from the Internet. Not my room but I love this! 😉
I mean, it really does. But, so does menopause, brain tumors, anxiety, hypothyroidism, loneliness, and a host of other things. I feel like when I have days like this (read: days that suck) I need to blame something: (see my list of things above). I don’t know why.
I guess because I hope I’m not just lazy. I hope that as these bad days come more often I will be able to not let them suck the life out of me and get me down even more.
Today, for example: I didn’t go to church. I went on an “adventure” yesterday (my words) and I think I overdid it. I just couldn’t clear the brain fog this morning. I woke up and felt like I was in a trance. So, I slept/napped a bit more. Did some reading. Caught up on one of my favorite shows, and while it’s still mid afternoon I have 2 choices. (Actually, I probably have many more but these are my main 2.) I can take another nap, rest my brain, or get up and clean my room and catch up on my mail and laundry that’s piled up.
A quick search states that solitary means: existing alone, unaccompanied, alone, friendless.
And it’s funny that I find myself alone as I am writing this post. Alone, except for my cats. I am a very proud Cat Mom. ❤
At this point in my life, or rather my CS life, I am unaccompanied at my medical appointments. But you know what? Just because I go to them alone doesn’t mean they are any easier to manage or bear alone.
I have just read a few posts on this prompt and much of what I read talked about being an introvert or extrovert and how to manage your life as such. I don’t know what I would call myself actually, but I guess my point is I wish I wasn’t in this medical world alone. It gets very lonely and overwhelming sometimes.
Medical world, Rare Disease world, Brain Tumor world, all of it. I can seem strong sometimes, because strong is the only choice I have.
As I first read today’s prompt, I thought to myself, “How does that song go? Shining, shimmering, splendid?”
Since I am clearly not a writer, I have recently made more effort to write on these Daily Prompts. For a ton of reasons (practice makes perfect!) but mainly so that I can (hopefully) write about other things than brain tumors and cancer, to show you I can be a really well-rounded person! 🙂
I love Aladdin. It’s actually one of my favorite movies!
I have such fond memories of watching the Aladdin show at the Hyperion Theater at DCA in California. Still heartbroken the show ended, but I know life must go on.
Want to know a secret?
I used to
wish hope pray that if I ever got married my husband-to-be would propose somewhere at either park, but deep down I hoped the Aladdin show could have been the place. “A Whole New World” kills me every time and I used to dream that would be the first song my husband and I danced to. ❤
This is a funny prompt, only because due to my deep depression I have struggled a lot with brushing my teeth. TMI? Sorry. Realtalk? – You bet.
A few years ago I finally made the move to an electric toothbrush and I haven’t looked back since.
AND, while I could go on and on about mouth problems and CS (but I won’t), I will say that I pretty much fault every dental hygenist I’ve ever met in my entire life.
I only found out LAST year there’s so much more to flossing! GAH, I am embarrassed to admit that, but it’s true. I thought flossing’s
main purpose was to remove any food that had lodged between my teeth. I never knew it was to scrape off all the junk and buildup!
Such is my life: Brain tumors, rare diseases, and learning how to floss properly at 44! 🙂
I always hoped for a traditional life. Marriage to a good man, children, a dog or a cat, I would have a career that offered something to the world, security, support, teamwork.
About 6 years ago this hope was destroyed. I am now dependent on others, unable to work, don’t have a career or security, cannot take care of myself.
Yet as I am reading this post now, why can’t I still have those things?
Looking back on my life, I would say the most disastrous day I ever lived through was the day I was diagnosed with a brain tumor. (The anniversary of this event happened to be yesterday, July 18.)
Disasters happen. This we know.
What’s the opposite of disaster?
This site shows many, many, many choices. I just had the thought to print out each one of the words listed and place them all around my room.
Sound like a good idea to you?