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.

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. 🤧

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!

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!

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.

Fraud. Also TL, DR

I am worthless.

I feel so utterly worthless.  These damn brain tumors have already taken so much from me!  And they continue to chip away at any self-confidence I have left, which is very minimal to say the least.

I wanted to attend a Thyroid Cancer Conference this weekend.  Wanted being the operative word.  It’s 5:15 PM and I just remembered about it now.  It’s over.  I missed Friday’s, and missed all of today’s.  I was in the works of being a moderator for an online support group for people with Thyroid Cancer.  How can I do that when I can’t even remember a stupid thing  like a virtual conference?!

I am a fraud.  A big, freaking, fraud.  Eff you Cowden Syndrome.  And a BIG eff YOU to Lhermitte-duclos Disease too.  You both robbed me of my heart’s desire and you continue, even 9 years later, to make me miserable.

I have mentioned that feeling many times over the last 9 years.  I feel like a fraud:  I may act like I have my crap together.  But, I don’t.  Not at all.  I try to be positive.  No one like a Debbie Downer.  I try to act brave.  But, I am not brave at all.  I am terrified of dying alone.  I am terrified of what my life will look like as my medical status moves forward.

I know it was only virtual.  I know that there are more important things to worry about.  But, as I continue to forget things, it just exacerbates my fear of what my life will be like one day.

What do you do to try to not beat yourself up about things?  

Good evening, or just scratching the surface tonight

Hello friends and family: I know it’s been a hot minute that I have updated!  I wish I could say it’s because my life is going smooth and there’s nothing to update on my medical status.  🙂  Sadly, that’s not the case.  So, here I am.

I often say the reason why I continue this blog is because *here is my safe place to vent.  My few friends don’t want to be burdened with my troubles, as they have their own to deal with.  I should probably start a YouTube channel because then I could safely vent to my heart’s content.  If I am blessed enough to be married one day I sure hope my companion *wants to help ease my burden and isn’t turned off by them.  I am a lot.  Rather, Cowden Syndrome and Lhermitte-duclos Disease and Thyroid Cancer, et al. are a lot.  But, alas that’s for another day.

The last 2 days have had me running around like a chicken with its head cut off.  I spent over an hour yesterday morning on absolutely worthless phone calls.  No one seems to do their damn job and I get drug into the middle of it.  I have a life worth living, and honestly *none of my energy and time should be spent wasted on medical people not doing their damn job.  Why do I have to call so-and-so to find the answer?  Oh, and BTW I called you with the answer and you said I was wrong and I was given wrong information.  And this crap goes on and on.  And, as of this evening, there still isn’t a resolution of what I am supposed to do and how I am to get my blood drawn with this new doctor.  Establishing care with a new doctor is just as bloody hard as when I got diagnosed!

Then today I had O.T. for my trigger finger (thumb) that I had surgery on in August.  Today was my 3rd visit and one of the treatments (electrical something) ended up burning my incision and I have 4 blisters on top of the scar.  Good times.

Guys, this is a lot.

I have been walking a bit more the last few weeks,  but man.  I need a vacation.  (Who doesn’t, right?  Freaking 2020)….who’s up for a road trip to Vegas for the weekend?