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. 🤧
rare disease
To the GI doctor
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.
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!
Sneaky peak
What day is it?
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?!
Photo by Quang Nguyen Vinh on Pexels.com
Tell me why? I don’t need anymore headaches
Can anyone please tell me why some people in the medical field suck elephant balls and continue to make my life even more stressful than it already is? If I was a *normie, dealing with these billing eff up’s wouldn’t be that big of a deal, TBH. But, I am constantly calling *this doctor or *that clinic reminding them to do their damn job. I have enough going on as it is. It is not my responsibility to do their job, too. It’s enough. It’s too damn much some days.
Yes, I am keeping a copious amount of notes on this particular matter (so, I had two big appointments last May and this piece of crap “billing office” can’t figure out that 2 + 2 equals 4 and that I have already provided the copy of my insurance card *again.
I have called the office twice since 1:30 PM. First call – I was expected to wait for 19 minutes, but don’t worry, they will call me back and I won’t lose my place in line. I called back at 2:30 PM, and I was now expected to wait 13 minutes and have I received a damn call back?!
Feeling the pinch of the c0vid is giving me a headache
I’ll tell you one thing for sure: living life with chronic medical conditions these last 10 years has *not given me great patience. Not in the least.
Yesterday, I waited at the hospital for 2 (two!) hours to have my blood drawn.
I have now been on hold for 8 minutes with said hospital to schedule my breast MRI. Good times. 🙄
Steps
I am battling my anxiety and it is pretty bad lately. So, I have set a personal goal to reach 10,000 steps at least 4X a week. Today, presently, I am at 8,926. I have a bit more walking to do….wish me luck!
Wordless Wednesday 1/6/21
If my brain tumors don’t end up killing me …..
….it will be the freaking dumb-ass staff at the medical clinics I am forced to interact with! How many hours of my life have I wasted being on hold with them trying to get a straight answer on something?!
That’s it; that’s the blog post.
hopeforheather 