Hello one and all. This is so terribly sad (to me). It’s been eons since I’ve checked in (obvi). And everything is different in WordPress. I do not know how to edit or create blog posts. Jeez. But, I am here. I am OK. Cowden Syndrome hasn’t gotten me yet.
Wordless Wednesday 1/11/23
Wordless Wednesday 1/4/23
Hi! I am still here. My health – rather stable right now and I will take that! How are you? Any plans for the weekend?
Wordless Wednesday 10/5/22
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?
Much needed update/clarification
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. 🎄🎁🎅🏻🤶