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.

Anxiety is a B!TCH and it’s slowly killing me

Hey there.  I hope you are doing well during this time of utter insanity.  Wherever you are, I hope you are well.  Me, on the other hand?  Not doing well, not in the least.  I am safe.  Yet, I am riddled with anxiety and can’t sleep.  I can’t eat.  I can’t move.  I can’t work.  I struggle to breathe.  I am trying so hard to stay strong for my family.  Yet, I am weak.

All last year, I thought I managed this well. Now, people are losing their damn minds and acting like it’s OK! It’s not! I don’t care whether or not you choose to take the needle.  It’s not my damn business what anyone else does! Nor is it YOURS! Unless it adversely affects me or my family – YOU DO YOU.  But, leave my nurses alone!  Leave my firemen alone! If you don’t “agree” then take a hard look in the mirror and mind your own damn business.

This is utter insanity.  No, “masking” isn’t OK. It’s not normal UNLESS YOU ARE SICK AND DO NOT WANT TO GET OTHERS SICK.  A mask isn’t a fashion statement for heaven’s sake.  How do I rise above this insanity and not have another nervous break down? What is wrong with people?!

Dear Readers:  How are you staying sane during this utter time of chaos and panic?  What is working for you to not lower your energy? Would love to know what is working for you. ❤

On anxiety

The thing with anxiety is that it makes you feel like your body is betraying you.  That there’s something wrong with you.  I mean, I have always been wound up pretty tight.  It’s common knowledge if you know me, or know anything about me.  But, something is different this time.  Something isn’t right.  My body can’t be trusted.  Just like my brain can’t be trusted, either.  I don’t know how to cope.  I am trying to distract myself with things, but I have to be careful what type of things I surround myself, you know?  I know it’s a drag to hear from your “friend who always complains”.…but, don’t judge them.  Don’t think you know what they are carrying because you have no idea.

Believe me, I know that every person is the world is affected right now.  Trust me, if I could fix my brain and my body, I would have done it last week.  I know I am powerless, but this is kicking my trash.  Hard.  Please don’t get it twisted.

Baby steps

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. 🤧

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!

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?!

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Photo by Quang Nguyen Vinh on Pexels.com

 

Checking in

Hey guys. It’s been a long while but I’m still here. I think, naively of course, that since I have now “graduated” to brain scans every 2 years, I am home free! Of course, that’s not true and in just a month or so time it’s time for my colonoscopy and EGD. Which, if you remember from previous posts, they suck balls.

I am focusing on a lot of self-care lately, which has included hot baths, books, and short “staycations” with my Mom. Talk soon! ❤

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?!