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.
I think I have posted some crowd funding links here in the past. But, there have been a few changes to the links so I wanted to do a new post.
I created a storefront on Teespring a while ago. I created custom t-shirts that have a two-fold purpose. They can be conversation starters: “What does ‘Ganglio What’ mean? What does CHAMP signify?”
Maybe you don’t know the answers to those questions technically, but since you read my blog (hopefully continue to do so, hehe) you could say, “Oh. A friend of mine has a brain tumor called Gangliocytoma.” OR, “I follow a girl on Twitter who’s username is @ZHeatherChamp and I think she’s a champ too!” (insert smiley face here.)
If you bought one of those shirts you are helping bring awareness to my blog. Which in turn brings a conversation about Rare Diseases. Or brain tumors. Or hereditary cancer syndromes. Any of that! Or all of that! Win, win right? (Reason #1)
Reason #2, which is kind of a big deal, too. I receive part of the purchase price to help me navigate my medical bills. I won’t rehash the trauma. It’s real and it’s bad. 😦
Thank you thank you thank you! I’m forever grateful.
Many of you know how dire my financial status is since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease. I am humbled and blessed by the kindness of friends and strangers from the help I have received from my GoFundMe page. I also created a Teespring store to raise awareness for Rare Diseases, which in turn helps me too. Please take a look at the Teespring link and consider buying a shirt if you can. I just created a new shirt yesterday!
This holiday season I am thankful for all of you. Who pray for me, who have donated to me, for everything. I account so much of my recovery due to the prayers of people I don’t even know.