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! ❤
Here’s the dictionary.com definition of viable: Capable of living.
To be honest, since being diagnosed with 2 brain tumors and Cowden Syndrome, I do not feel capable of living. My life now (financially speaking) isn’t practicable or workable. I don’t have the capability to grow and develop because I have no money and keep postponing bankruptcy.
I could write every day about how destitute I am. I know I could also write every day about my blessings and hobbies (my Wordless Wednesday posts) – but my blog is my safe space. It’s my place to cry, scream, bitch, moan, whine, wail about being broke, alone, scared, terrified of my future, blah blah blah. About being pissed off that my life continues to be a struggle. About wishing I could catch a break. About hoping I can have some good things happen for me.
I want a viable existence and Lhermitte-duclos Disease (at least) robbed me of this fact. I’m so tired.
While I get caught in some deep depression most days, I know there are many miracles in my life. I could dedicate an entire blog to them. However, not today. I want to focus on my healing since my brain surgeries. I know it is nothing short of miraculous that I am alive today and able to walk.
Welp, thanks to Cowden Syndrome I don’t have any children to leave an inheritance. This whole idea weighs heavily on me, too. Will anyone care when I’m gone? Will anyone want my small about of jewelry I have or will that be buried with me?
Tomorrow morning I have my next brain scan.
Part of me feels like I just had one yesterday, and the other part of me feels like it was 10 years ago when I last had one. Such mixed feelings!
It doesn’t get any easier; it’s just different now.
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! ❤
I’m trying to kick up my exercise again, because surgery last month put a wrench in things.
crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)
I felt like a normal person! Albeit, for about 15 minutes. But, still I’ll take it.
Because then I remembered I have my brain scan next month because gangliocytoma. And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.
I guess this is part of what life entails, right? Little moments of breathing in between the big stuff.
Or in my case, the big brain stuff.
I’m having surgery tomorrow.
You know, I swore that after my last surgery (the hysterectomy) that I would NEVER have another surgery. Never ever.
And, yet here we are.
For the record, thankfully it’s not on my brain or my breasts.
It’s time to say goodbye to my gallbladder.
Catch you on the flip side friends!
I don’t express myself well. In fact, I never have. Either written or verbal,
it’s just a mess I struggle getting my thoughts out.
So, maybe you’re thinking, “Well, then why did you create this blog?”
In looking back over these 6 years I realize it was to give meaning and purpose to my voice; my life with 2 brain tumors and a Rare Disease called Cowden Syndrome.