Last week I had my brain scan and kidney scan only a few days apart. It was a lot. Just a lot. And, believe it or not, I only needed my Xanax for one of them. 🙂 #winning
I can’t believe I almost forgot I have a blog. Who am I?
I cannot begin to explain how busy and chaotic life is right now (hi, everyone, right?!)
I changed insurances and while I knew it would be a bumpy first few months with trying to establish care, I honestly couldn’t predict it would be *this bumpy. I am doing it; just like I always do, but sheesh.
Have had and continue to have a butt load of appointments and I am getting overwhelmed. I just decided to postpone my next brain scan until June because I need to breathe.
Is anyone still here? How are you doing?
The thing with anxiety is that it makes you feel like your body is betraying you. That there’s something wrong with you. I mean, I have always been wound up pretty tight. It’s common knowledge if you know me, or know anything about me. But, something is different this time. Something isn’t right. My body can’t be trusted. Just like my brain can’t be trusted, either. I don’t know how to cope. I am trying to distract myself with things, but I have to be careful what type of things I surround myself, you know? I know it’s a drag to hear from your “friend who always complains”.…but, don’t judge them. Don’t think you know what they are carrying because you have no idea.
Believe me, I know that every person is the world is affected right now. Trust me, if I could fix my brain and my body, I would have done it last week. I know I am powerless, but this is kicking my trash. Hard. Please don’t get it twisted.
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!
Life is happening very quickly.
Usually this overwhelms me to no end.
Tonight I find I need to write a bit and then get to bed earli(er) than usual.
I have had a bunch of appointments these last 2 months and I find myself struggling greatly to keep it all straight. Between labs with my endocrinologist and a “spot” in my thyroid bed that we STILL don’t have a definitive answer on what it is…to reviewing my EEG with neurologist and MRI with my neurosurgeon. I told my mom last week that it’s really good I didn’t suffer (more) brain/cognitive issues post brain surgeries because SHE would have to be the one managing all these appointments and scans and results!
It’s a whole lot.
Sometimes I just need to get on here and just say that.
Cowden Syndrome is a lot.
Lhermitte-duclos is a whole effing of a lot.
I know there’s no handbook or manual to manage Chronic Illnesses but imagine how much simpler life would be if there were one!
What would you include in your book? I think I would be sure to include watching a WHOLE lot of 90 Day Fiance! (I’m kinda obsessed, tbh). 🙂
- You have two brain tumors.
- You have a rare genetic condition called Cowden Syndrome.
- You had 2 brain surgeries.
- You had a prophylactic hysterectomy.
- You had thyroid cancer and had 2 surgeries as well.
- Once returning to work after both brain surgeries, you were bullied and forced to quit.
- You now have some cognitive issues.
- You applied for Disability.
- You were denied Disability.
- You tried to raise money to survive.
- You were forced to file bankruptcy.
But just except it, Heather. Then you’ll be fine.
I saw a Neurologist yesterday!
I won’t bore you with the details of why I stopped seeing one earlier, blah blah blah. Good news is I now have one.
I’m kind of processing everything still – all I have really ever wanted is for a Neuro to “have eyes on me” as my brain tumor (and brain surgeries) symptoms are progressing.
Granted, adding another doctor to my team may seem kind of odd, but this works. 🙂 I have said numerous times to numerous doctors that I don’t expect anything to change. I know there are no miracle drugs to help me manage life now and I sure as hell AM NOT having another brain surgery. Ever.
Until next time!