I feel so utterly worthless. These damn brain tumors have already taken so much from me! And they continue to chip away at any self-confidence I have left, which is very minimal to say the least.
I wanted to attend a Thyroid Cancer Conference this weekend. Wanted being the operative word. It’s 5:15 PM and I just remembered about it now. It’s over. I missed Friday’s, and missed all of today’s. I was in the works of being a moderator for an online support group for people with Thyroid Cancer. How can I do that when I can’t even remember a stupid thing like a virtual conference?!
I am a fraud. A big, freaking, fraud. Eff you Cowden Syndrome. And a BIG eff YOU to Lhermitte-duclos Disease too. You both robbed me of my heart’s desire and you continue, even 9 years later, to make me miserable.
I have mentioned that feeling many times over the last 9 years. I feel like a fraud: I may act like I have my crap together. But, I don’t. Not at all. I try to be positive. No one like a Debbie Downer. I try to act brave. But, I am not brave at all. I am terrified of dying alone. I am terrified of what my life will look like as my medical status moves forward.
I know it was only virtual. I know that there are more important things to worry about. But, as I continue to forget things, it just exacerbates my fear of what my life will be like one day.
What do you do to try to not beat yourself up about things?
Hello friends and family: I know it’s been a hot minute that I have updated! I wish I could say it’s because my life is going smooth and there’s nothing to update on my medical status. 🙂 Sadly, that’s not the case. So, here I am.
I often say the reason why I continue this blog is because *here is my safe place to vent. My few friends don’t want to be burdened with my troubles, as they have their own to deal with. I should probably start a YouTube channel because then I could safely vent to my heart’s content. If I am blessed enough to be married one day I sure hope my companion *wants to help ease my burden and isn’t turned off by them. I am a lot. Rather, Cowden Syndrome and Lhermitte-duclos Disease and Thyroid Cancer, et al. are a lot. But, alas that’s for another day.
The last 2 days have had me running around like a chicken with its head cut off. I spent over an hour yesterday morning on absolutely worthless phone calls. No one seems to do their damn job and I get drug into the middle of it. I have a life worth living, and honestly *none of my energy and time should be spent wasted on medical people not doing their damn job. Why do I have to call so-and-so to find the answer? Oh, and BTW I called you with the answer and you said I was wrong and I was given wrong information. And this crap goes on and on. And, as of this evening, there still isn’t a resolution of what I am supposed to do and how I am to get my blood drawn with this new doctor. Establishing care with a new doctor is just as bloody hard as when I got diagnosed!
Then today I had O.T. for my trigger finger (thumb) that I had surgery on in August. Today was my 3rd visit and one of the treatments (electrical something) ended up burning my incision and I have 4 blisters on top of the scar. Good times.
Guys, this is a lot.
I have been walking a bit more the last few weeks, but man. I need a vacation. (Who doesn’t, right? Freaking 2020)….who’s up for a road trip to Vegas for the weekend?
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.
Day 4 of Brain Tumor Awareness month and today I decided to share a little bit of data (that I could find) about the type of brain tumor I have: Gangliocytoma. My understanding is that this is a very rare, but benign, brain tumor that makes up about 1% of all brain tumors.
Sadly, a few of the “main” brain tumor org’s I have found do not carry much, if any, data about Gangliocytoma. Yes, they are rare. Yes, they are benign. But, it is still a type of brain tumor and the data that *is there should be included. I think that is one of my biggest frustrations since diagnosis: inclusion of *all types of brain tumors.
Anyway. Below is one of the (few) links I have found in my research. I pray that more data will be collected!
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! 🙂
Hi everyone! So today marks the beginning of brain tumor awareness month and I am planning on doing something different over here on the blog. My plan goal is to write a blog post every day this month with facts about brain tumors, or what my life is like today 9 years post brain surgeries.
Now, I may take advantage of using either Twitter or Instagram to post, but that all depends on how I am feeling each day. (I haven’t yet written about my thyroid ultrasound this week and what that involved.)
So be sure to check out my social media accounts and let’s have a great Brain Tumor Awareness Month! You can follow #btsm, #btam, or #GoGrayInMay to get involved and/or read about other brain tumor advocates.
Good night and be in touch! 🙂
Check out my social media accounts here and here, and also click here to check out my Bonfire store. Will you be able to purchase a shirt to support me (during Covid19) and my brain tumor and rare disease life? ❤ ❤ ❤ Thank you so much!