Hi! I am still here. My health – rather stable right now and I will take that! How are you? Any plans for the weekend?
I just hit the 11 year anniversary of getting diagnosed with Lhermitte-duclos Disease, which then led to the diagnosis of Cowden Syndrome. How can that even be? It came and went, July 18. I was aware though. I can’t imagine there will ever be a time in my life where I am *not aware of the month of July. Day after tomorrow is the anniversary of getting my head cut open for the first time, July 27. I’m stunned. Just stunned. That is some heavy information, you know. Thank you for being here with me. If you’ve been with me from the start or found the blog after, I am so glad you’re here! It means so very much.
Scan, scan, scan away
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
Shock and awe
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?
November 2021 check-in
Hi. It’s been a quite a while; at least it feels that way. Just quickly checking-in. I think the old anti-depressant is doing its job helping my anxiety as I am not crying instantaneously as I was a few months ago. As of this post, I am still employed. Haven’t heard anything from the “governor” and what may happen is his tyrannical mind. But, I feel a tad more confident that if I have to walk away from my job to protect my health and agency, the Lord has got me. He has something better in store for me. I just have to exercise my faith in Him.
Today I learned
that #MentalHealthMatters only if it has nothing to do with C19 or the needle.
What planet do we live on?!
I was just told that my hospital is refusing to grant any medical exemption for the needle to ANY patient. Period. This is not OK! If you are living with 2 rare brain tumors that have been stable for 10 years and have no qualms about being forced to take it, please contact me. Otherwise, if you feel that this rule from the hospital is OK, please unfollow me now. We will not ever agree to disagree over this.
My “doctors”, and I use that term loosely, work for ME. They are supposed to advocate for ME. What the hell am I paying so much money for if this is the treatment I receive from them? This is utter BS. I have a voice and my voice matters. I WILL NOT BE SILENCED OR BULLIED. I have called the grievance line for the hospital and you can sure as hell bet I am not going to take this lying down.
Hopeless; yet #MentalHealthMatters, yes? So mine should matter just as much as the next person.
I don’t want to get the needle. It’s not for me. I have prayed and researched and studied and it’s not for me. I don’t feel peace when I think about having that injected into my body. I should feel peace. I should have the right to decide for me. If you are going to reply with “but the needle will eradicate C19” please stop. People who got the needle are still getting C19. They are still getting sick. They are still getting hospitalized. They are still dying. The needle has not, and will not stop it. Save your breath.
However, if you choose to get the needle – then I APPLAUD you. If you made the choice on your own, or with your family/Higher Power/anyone else you choose to discuss your personal medical history with – I APPLAUD you. I support you in making your own choice for your body. WHY AM I NOT AFFORDED THAT SAME RESPECT? Please. For the love. I beg you. Why am I not afforded that same human decency? You know, I am reading everywhere that #MentalHealthMatters. Doesn’t my mental health matter too? Or just yours? How is that OK? How is that normal? I am terrified that the needle will trigger my brain tumors to grow. Period. End of sentence. The needle isn’t for me. I am in the process of asking my doctors to write me a letter of medical exemption if I need one for my employer. My first doctor refused today. My NEUROSURGEON. If I cannot find one doctor on my team how can the medical industry fail me like this? I am trying to have faith. To be positive. To live in hope and faith. But, I feel hopeless. And I am terrified. I am scared. I feel like I am sinking back to the very dark place I was in last month, and that scares me too. I am afraid as my thoughts aren’t good.
This morning I had my first EMDR therapy session and I’ll be damned if I didn’t go straight to the few moments before the first craniotomy. It was so very much. 🤧
An open letter
To the person I came in contact with earlier today on Instagram. Remember, you were on my account, but that’s no matter. Since you blocked me, I have no way to respond but thankfully I have my own place on the Internet to share what’s in my mind and heart.
1). OK. So, you have the PTEN mutation as I do. You have that listed on your profile, and I can only assume that’s why you followed me. I saw that you noted “brain surgery warrior” or some such thing on your profile. Since you noted that on your account, I only *safely assumed that you must have LDD like I do. (Now, for those that don’t know, LDD is a very rare type of brain tumor associated with Cowden Syndrome. I only asked you about it since I assumed you have the same type of brain tumor as I do.)
2). That’s crazy that you too had a chiari malformation. I too had that, due to the size of the brain tumors in my cerebellum my cerebellar tonsils were pushed down and hence part of the reason why I needed the craniotomies.
3). I wrote numerous times in our chat that I didn’t mean to overstep any boundaries with you. Since you didn’t know what LDD was, and to be honest, may persons living with PTEN mutation DO NOT know what it is either. I only shared what I know. I wasn’t barking orders at you. I am fully aware how overwhelming life with Cowden Syndrome truly is. I know you didn’t *ask for advice, nor was I giving you any,. I was only “chatting” with another person who truly understands how overwhelming the PTEN life is. That you took offense to our chatting, I am sorry for that. I hope that you have great doctors who will keep you in the loop for the health of your brain moving forward.
Blocking me seems childish for some reason, but you do you. It’s a lot to manage! You can do it! I’ll be here if you ever need anything. I wish you all the best!