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.
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?
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. 🎄🎁🎅🏻🤶
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.
that #MentalHealthMatters only if it has nothing to do with C19 or the needle.
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!
Oh my! Have I really not been here since April? How the heck are you doing?!
OK. So, where do I begin?
1). Had my colonoscopy and EGD this past week. No fun. Not one ounce of fun was had by anyone there. I know there were biopsies removed from my colon and esophagus; and I still wait. I do recall my GI doctor saying to me more than once, “I am really worried about your esophagus”. Well, isn’t that swell.
2). Saw Dermatology this week, also. Not as eventful but still so grateful to check it off the list.
I have some other exciting news to share but I will do that in another post. How are you doing? What’s new? How’s your family? 🙂
In other news: Did I miss a huge change in WordPress? I can’t edit posts like I used to? This is really difficult to navigate and sadly might make my decision for me in retiring the blog. This is so frustrating. What am I missing? I have tried to edit this post (typos) for the last 10 minutes with no resolution. What I ended up deleting, because I couldn’t fix the typos, was CAN YOU BELIEVE THAT NEXT MONTH IS OUR 10 YEAR ANNIVERSARY?!