I created this blog 9 years ago to document my life living with 2 brain tumors. Yet, as I sit here this evening I cannot bring myself to write about anything. I’ve never had a filter here, and I am not purposely holding anything back. It’s just that I cannot connect anything in my brain to share. Sadly, things are very active with my Cowden Syndrome and Lhermitte-duclos Disease. I had a visit with the ENT last week to talk about my tinnitus. I could write about that at some point, I suppose.
So, what should I do? Retire the blog? Move entirely to Twitter since short blog posts are more my style (at least I prefer to read short blog posts). Is anyone still here? Would love to hear if anyone’s still here with me. This whole “Content Creator” trend definitely isn’t how this blog began. Unsure if I can make the transition.
In the past 10 days, I have lost 2 friends suddenly to heart attacks. One passed away this past Sunday, and the other one died the Sunday before that.
I am always honest on my blog. This is the only safe place for me where I can be fully open and vulnerable, no judgement from anyone or anywhere because this small blog space is mine and mine only.
I am not doing well with these 2 losses.
Maybe I will write more about these painful and sudden losses of life. These were 2 pretty important people in my life and I cannot see forward.
EDIT: So, I cannot do simple math. Last Thursday I found out a very good friend passed away suddenly. And a few hours ago I found out a former colleague died. That is a major blow to anyone, let alone 2 deaths in 6 days.
Day 2 of Brain Tumor Awareness Month and I am 2 for 2!
I was thinking earlier about what I wanted to share today. I decided I would share a bit about where this blog began.
I began this blog the day after being diagnosed with a brain tumor. I knew nothing; nothing about what was ahead for me. Oh, man. I was so naive! I miss that Heather, to be honest. That Heather knew pain, sure. But she was so little then! ❤ I wish I could go back and tell that Heather I will never forget her. I wish I would have hugged her a bit longer. 😦
If you click here you can read my very first post. I am very thankful that I have those early days that I can look back on.
Have a good evening. Thank you for being here.
Please don’t forget to visit my Bonfire store – click here! and consider buying your custom t-shirt today! Thanks! 🙂
I don’t have anything witty to write now. As I’m sure you’ve read numerous times: We are living in unprecedented times. There is no doubt of this.
I could list all the Netflix documentaries and the app exclusives for 90 Day Fiance on TLC I have watched. But, I want to think about this moment in history differently.
Yes, my specialist doctor appointments have been
canceled postponed. I expected as much, but I do have a wellness checkup (my term) with my new PCP in a couple of weeks. I was am concerned about this appointment being canceled, although I was reassured this week that it would not be. If you’re new here, I used to have an oncologist who managed all my screenings for Cowden Syndrome. Yet with new insurance I had to see another one, and I wrote about that in a previous post because it was an absolute travesty when I saw the “new” one. (You can read about it here.)
Anyway, I have to manage all this medical stuff now since I have no oncologist to help me, and what’s next on the agenda is a breast exam. While my medical status overwhelms me on most days of the week; I am so happy to realize that I haven’t freaked out about anything health related since this event began.
This makes me really happy. Happy to write it and happy to acknowledge it. 🙂
Does anyone know how I can make my Wordless Wednesday photos the same size?
I thought that I could choose MED/LG/JUMBO or some such thing…but now I can’t find that option in the media tab/folder?
Thanks in advance. My OCD is on fire with my photos all different sizes. #Blergh
I got up early today; early for me that is. Set my alarm for 6:30 AM and I actually got up! Put on some shoes, drank some water, kinda brushed my hair, and set out for a morning walk. Put in a good 25 minutes so I call that a win!
I’ve noticed lately that I seem to write with no regularity whatsoever. I almost wrote, “with no purpose”, but I realized that’s not true. My purpose is to talk about Rare Disease. To share about what life with brain tumors is like. Before all this garbage, I (obvi) didn’t know anyone with a brain tumor. But now, dear reader, you CAN say you know someone with a brain tumor: ME! I’m going to make it a goal to write about my regular, boring, life when brain tumors aren’t on my schedule. But, wait. These tumors in my cerebellum are always on my schedule; whether I address them or not remains to be seen each day. 🙂
I started PT again this afternoon. I’m excited (?) to see how it goes this time.
I am thankful I started this blog all those many years ago. This has been such a great tool for me!
PS. What happened to the edit/spell check function on here?
I started this blog almost 8 years ago as a way to communicate with friends and family about my brain tumor diagnosis and surgeries. Then, my blog became a friend; someone I could talk to about the very things keeping me up at night. (The recovery of 2 brain surgeries a week apart is one the hardest things anyone can endure, IMO.)
Slowly, albeit very slowly, I have found my voice – welp, kinda – and I am feeling comfortable writing about other things in my life: my faith, more about my health as I made some major decisions the end of 2017 and my life is in a different direction now, my financial ruin, bankruptcy, and now seeing the other side of those things, and more!
I guess my point is I am gradually feeling the urge to share a bit more about myself. I hope you stay around. ❤
Where or where to begin?
I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe. Writing, sometimes, helps me breathe.
Here’s a quick recap on the last few months:
- In January, I lost my rescue dog. I loved him for the past 8 months and he forever changed my life. I was utterly gutted at his loss, but it was time. He was ready although I never was, nor ever will be.
- Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet. From the brain tumors? The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell. The dot and the period.
- Do you remember the thyroid issues I have dealt with since last October? Last month also, I had another fine needle biopsy on my (empty) thyroid bed. (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING ON IN MY NECK! I
had have elevated thyroglobulin and my doctor thinks maybe it was a technician error? Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
- Haven’t filed BK yet. Found out there was some paperwork I need to submit to one of my creditors.
- My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
- I deleted my twitter account. I don’t know why; just felt like the right thing to do. Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
- I have this great urge to purge (LOL). Probably the shame and anxiety about the BK.
So, what else folks? Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do. Let’s see if I fight against my norm and do it different.
For Pete’s sake, I have Cowden Syndrome and Lhermitte-duclos Disease and can’t think of anything to write about today? Eeeeeesh, that’s weird. I just spent 20 minutes looking up “Blog post ideas” and got sucked into the black hole of competitors and marketing? Baha. No clue.
I have some news that I am debating about sharing here. You guys are the greatest and I know you’ll be supportive and happy for me! ❤
I decided to join a few books clubs and I am very excited to go to them. I was a huge reader before diagnosis, but then I put it away for a while because it became so challenging for me; and in fact it still is. But, I know reading is good for my brain so I am thankful to have found my passion for it again.
I ordered the books online and can’t wait for them to arrive. I’ll share them with you soon.
Fall is just around the corner; I cannot wait. Which then leads to Christmas time which is brain scan time. Blech. Saw the oncologist a few weeks ago and have a mammogram and kidney scan coming up quick. I wish I could tell you I am a pro now at these appointments, but haha, nope.
I do not want to ignore my feelings, but I then wonder am I doing myself a dis-service by not writing about them? I can’t will them away; my thoughts or what I’m experiencing. It’s a bitter pill for me to swallow as I am acutely aware of how many walls I am running into because of my wonky balance issues.
Soon enough I will write about the current brain tumor/surgery/symptoms I am experiencing. Not tonight though.
Oh one more thing. Have you watched this show? I love it so much I cannot stand it!
And of course, I get that. But, I don’t view my blog posts as complaining; I’m documenting.
My biggest fear is dying alone and I suppose that this blog helps me feel
safe secure that my life has some value and since everything is forever on the Internet, haha, I won’t be forgotten.
Being single and alone, no children too, is weighing on me heavily as of late.
My brain surgery/tumors are causing me more grief, too.
I have run into walls more frequently, about fallen over several times, and since it’s summer that means it’s time for daily headaches. Oh, joy. 😦
So, writing here about my life’s struggles helps me to feel validated. I know I am not alone in my brain tumor life (or my Cowden Syndrome life for that matter.)
It is what it is.
I’m scared and anxious today.
Thank you for being here.