- I don’t have to be brave.
- I don’t have to be strong.
- I am not alone.
- I can be honest.
- I can be myself.
- I can scream.
- I can yell.
- I can cry.
- I can be scared.
- I can be myself. Truly and authentically me.
I am having another fine-needle biopsy this Friday. Again. On my neck. Where I am not supposed to have a thyroid. I road this route in 2003 and 2006; I am supposed to be done. So what the hell is going on? I’m pissed this is still going on. Next month will be an entire year dealing with this thyroid “regrowth” and between dumb-ass insurance companies dicking me around, making me jump through additional UNNECESSARY hoops, etc. etc. I still don’t have an answer as to what the freak is growing in my thyroid bed.
The system is vehemently broken, as I’ve said before. And, I will say it again and again.
(Is it odd that I want it to be cancer or suspicious enough that they can just take “it” out?)
Give me another damn surgery so I don’t have to be worrying about thyroid cancer regrowth.
But guess what.
When you get a diagnosis of Cowden Syndrome worry comes with territory.
In these last 8 years I have learned that Cowden Syndrome equals worry. There’s no way around it.
Click here to see the shirt I created for just this exact moment. Ironically enough, I created this when I was denied disability. Yet how appropriate is it for me today!
Hi there. It’s been a while; I’m still here.
I think I have written many times about my toxic financial situation post diagnosis of Cowden Syndrome and Lhermitte-duclos Disease. For the sake of time, I’ll try to snapshot it here:
- I’m in debt over $20,000 on my credit cards as I have been forced to live on them, since I can no longer do what I once did for employment.
- I have kicked around this idea for months, the bankruptcy idea. I have prolonged it as long as I could because my ego and credit score. 🙂
- I also owe over $35,000 in student loans (you know, the whole career thing I had planned before having 2 brain surgeries, et al.)
I called one of my creditors this morning to find out about any hardship programs they offered. Currently, my monthly payment is $395. Guess what program I qualify for with them? A 5 year program with a monthly payment of $370.
Am I missing something here?
So, bankruptcy is next. I have an appointment the end of February to see an attorney to just get this done and over with. (NOTE: The filing fee for bankruptcy is $1875.)
So, if you happen to see or hear from me and I am riddled with anxiety, or so depressed I cannot get out of my bed, or I’m distant or just seem off – please know it’s because life is a lot right now. It is literally costing me money to live – and I am going deeper in the hole every moment of every day.
Pretty grim right now for me, tbh.
If you happen to see me on Twitter and see my posting about my GoFundMe or my Teespring store, would you do me a solid and share then for me please?
Thank you. Until next time.
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!