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 need to clarify something on my previous post. But before I do so, do you remember this post from my early days here? If you have a moment, please do check that link. That doctor was Dr. F., and she was beyond incredible, supportive, and knowledgeable of all things thyroid and beyond. Getting diagnosed with Cowden Syndrome, after 8 years since my ThyCA diagnosis was huge. I am so thankful she was on the road with me.
So, let’s move on to my most recent Endocrinologist, whom I will call Dr. Savage. 🙂 You know, with my hundreds (probably accurate) of various doctors I have seen these past 10 years, there are 4 total who will always be in my heart: my neurosurgeon, my first PCP, Dr. F. and now Dr. Savage. They all deserve an entire blog with thousands of post dedicated to them and their service to ME, their patient. #grateful
Anyways, I posted a few days ago about what Dr. Savage said to me on my last appointment. I didn’t take offense! I was joking in my post actually (with my reaction). I won’t go into it again here about depressed and horrible my mental health was a few months ago. I was in a very dark place, quite scary. Good gracious meds. can be a lifesaver. I begged and pleaded with Dr. Savage to write me an exemption for my job, just in case I need one. Dr. Savage couldn’t/wouldn’t write me one. Also, I won’t go into it here about how much that killed and destroyed me; he knows. Dr. Savage knows. But, regardless if *that issue, I know he cares about me as his now (former) patient.
We did get me a current thyroid ultrasound because you know, Cowden Syndrome and thyroid issues go hand in hand in hand in hand. Dr. Savage told me the scan was “OK”. I don’t ever use normal because CS isn’t normal. He said the tissue, which is *not thyroid tissue, is stable. If I were still his patient he would scan me next December, unless labs come out funky or something before that. The tissue is probably a nodule, and thanks once again to Cowden Syndrome, I did have a multi-nodular goiter that took 5+ hours to remove back in 2003.
Happy New Year to one and all. I pray 2022 we all can see some light. Somewhere. At the end of this hellacious tunnel we are in.
My Endo is SAVAGE. I walked into our appointment today and first thing he says is, “You’ve gained weight.”
Uhm I knoooooooow this. Kinda due to out of control anxiety due to C 1 9 and how the world has LOST THEIR MIND and how people think they can remove my choice over my body, etc.
But today was hard as I had to say goodbye to him. Changing insurance because money. Life is so weird sometimes. But even more so with 2 Rare Diseases. More soon. 🎄🎁🎅🏻🤶
My head hurts. This is too much for me to process. All I want to do is sleep. People are losing their minds. People are OK with *me losing my career because I will not comply for WHAT IS NOT RIGHT FOR ME. It’s too much. I can’t handle this. I need help. And sleep.
that #MentalHealthMatters only if it has nothing to do with C19 or the needle.
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.
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. 🤧
Yesterday we had a quick telehealth appointment to review my results of my colonoscopy and EGD. And, I say quick – as you couldn’t get me off the phone fast enough.
What gives? What’s your problem? I don’t appreciate your rudeness. I want to chalk it up to you just having a bad day, but was that it? It sounded like you were in your kitchen making lunch. OK, whatevs. I can deal with that. But, what I’m pissed off about is that you blew me off. The faster you talk to me, the harder it is for me to process. I took notes. I asked questions. But, you said we were going in circles, YET WE WERE NOT.
You have no idea how hard it is to manage life on life’s terms living with Cowden Syndrome and Lhermitte-duclos Disease. You were one of the few doctors on my team that I respected and trusted. And, let’s face it: you sucked yesterday. Not cool, doctor. Not cool. I get that you’re a specialist, and all that. But, I don’t care for how you treated me yesterday. In the past several years I’ve worked with you, you’ve never been this callous to me. Don’t do it again.
Thank you for coming to my Ted Talk.
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!