Static cling? Static on a radio station? Static in my hair?
But, I can definitely say that my life hasn’t been static these past several years. The Internet says that static means lacking in movement, action, or change. My entire life has changed! My life now is moving in a direction that (still) paralyzes me with fear some days.
Brain scans, appointments with Endocrinologist, needing to schedule next colonoscopy and EGD, meeting with Therapist, figuring out how long I can avoid bankruptcy, and it goes on and on and on…..
Cowden Syndrome and Lhermitte-duclos Disease doesn’t give its folks a break! Your life will never be static again.
PS – Since you’re here, will you please visit my teespring.com site and consider buying a custom t-shirt supporting Rare Disease Awareness? Thank you! ❤
I love today’s prompt! Whenever I hear the word cozy I envision tons of Christmas blankets on my bed with my cats nuzzled inside. (I literally have 3 throws on my bed at this time and I want to go burrow myself in them right now!)
Happy New Year everyone!
While you’re here please take a moment to visit my GoFundMe and Teespring sites. Thank you! Your support means so much to me. ❤
When I first read the prompt for today, I thought about how much I love to crochet and yet I always wish I had learned how to knit. I would imagine my Mom probably knows how, but who knows. I do know that my Mom taught me how to crochet and she learned from her mother. I have made tons of afghans throughout the years, but unfortunately don’t have access to photograph them. I think they are shoved in the attic, but wrapped up of course. 🙂
If I think about learning to knit now, I get filled with anxiety. So lame, but it’s true. I can feel my tension rising even as I am typing this because my damn fingers don’t work like they once did. I am only in my mid-40’s for Pete’s sake, but because stupid brain tumors things just aren’t as they once were.
Sigh. I have the itch to create so I will continue editing photos as that is really enjoyable to me. Check out my Wordless Wednesday posts to see some of my photos.
And please don’t forget to visit my teespring store as I am struggling to survive post diagnosis and am looking for ways to raise money. Thank you! ❤
A few months before I was diagnosed with the brain tumors, my left eye was twitching constantly. The top and bottom eyelids wouldn’t stop twitching! It was so annoying. I went to a few natural doctors around that time (not for the eyelid specifically) who did different types of testing, including muscle testing. The doctor said I had an intolerance/allergy (I cannot remember the exact term he used) of American cheese, wheat, and something else that I can’t remember either (hello brain tumors and menopause. I can’t remember crap anymore!)
It’s interesting to note that at that time (6+ years ago) I had been
loving er, I mean living on triscuits and cheese. I think that’s only incidental but hey! You never know. hehe
I don’t remember either if the supplements he started me on did anything to help my eye. I do remember though getting diagnosed with a 5 cm. brain tumor 5 months later (cough! cough!)
So, my point is: I don’t think my left eye has twitched once since this whole Rare Disease stuff began.
Guess what started twitching 3 days ago? And, coincidentally I skipped my brain scan this mid-year. (I am ready to do the MRI’s yearly now.)
But that’s really here nor there.
*ALSO: I have made a few more changes to my Teespring storefront: Please take a look!
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! 😉
Check out the new custom t-shirt I just created!
Take a look at my entire store here. What other items would you like to see? I am doing all I can to be financially independent. Please consider buying a shirt if you can.
Thanks for looking!
I created this teespring store to raise money for my living expenses plus to raise awareness for Cowden Syndrome and Lhermitte-duclos Disease.
Take a look at the new shirt I created just now!
PS…if you know anyone that creates artwork or is willing to donate their time to help me create more shirts, please contact me! Thanks!
Check out this link to see some new items in my storefront.
I am very thankful for your support.