Hope

I just finished my EEG and had one of the most spectacular technicians ever! She was awesome. Period. She is 100000000% in the right career field. She gave me hope that not all medical people suck!

While the test was rough (the flashing lights part was no good) she made it “less rough” (90’s R & B can make anything a whole lot better!) PLUS she listened to me.

Thank you Ms. P!

I fell down or happy 1000th post

A few days ago I blacked out and hit my head on a wall in my house. Scared the bloody hell out of my mom; I’m still kinda in shock about what happened and I try not to think about it. I took an ambulance ride and had a bunch of tests in the ER including a CT scan on my head and a chest X-ray.
I was told by the doctor that everything came back “OK” and there didn’t seem to be any huge issues in my head. So, that’s great news.

Interestingly enough I had an appointment already thankfully scheduled with my neurologist yesterday. He wants to do an EEG and I have my next brain scan, #scanxiety, in December and he was fine with waiting that long to get a scan.  

I’m terrified it’s going to happen again at any moment.

Unexpected

I ran into an old colleague. It was unexpected but really nice to chat with her for a few moments.

Eight years ago, when I was literally being wheeled to my first craniotomy (head bandaged and wrapped and all) – we passed each other in the hospital. I in my wheelchair, she was standing near a Nurses Station. I assume she was there visiting someone, family, etc. I can still see and feel in my body RIGHT AT THIS MOMENT my emotions at that exact moment – so many years ago.

It’s so odd to me, albeit even overwhelming, that I still have such intense reactions to things that trigger me to that time in my life.

That time of my life was a living hell.

I wonder if my vivid memories – and the reactions they trigger in me – will ever subside?

Daily Prompt [Blush]

Any tendencies I had to blush while hopping into my hospital gown are now gone.  I will strip naked in front of any nurse or doctor any day of the week.  That’s just what Cowden Syndrome and Lhermitte-duclos Disease have given me!  Shall I be grateful?  Not really.  But since I’m kind of a professional patient now there’s no need for me hesitate.  I will jump right in to get the business done.  No time to waste!

Oh, and by the way, speaking of waste, tomorrow morning I have my next colonoscopyI don’t like that I am high-risk colon cancer, and in fact I don’t like that I am high-risk any cancer.  It’s just what is today.  This is almost hour five of me trying to get the prep down.  It’s rough.  And I mean r o u g h.

Please send me good MOJO in the morning!  I really appreciate it.

One week 

Tomorrow is 7 Day post op. I’m home from the hospital! Thankful and grateful for my healing. More soon. 

“So what are we doing today?”

“What brings you in today?  I know we just saw you in March.”

W E L P …

I met a very nice hospital employee this morning.  I am finding more often I am getting nice ones, which is a huge deal!  When you have to interact with a sucky medical employee it’s such a freaking drag!

As I was in the exam room, I began my story:

  • PTEN mutation
  • Breast Cancer risk
  • Similar to BRCA mutation
  • Brain tumors
  • Surgeries

And the list goes on. I kind of have my “go-to” story when I meet new medical professionals.  She was friendly, and I could tell she has been around the block (but I don’t mean that at all in a negative way).  She says to me, “I have been around over 20 years and I’ve never heard of PTEN mutation.”

GAH THIS IS SO WRONG PEOPLE!

She was nice to let me rant a few minutes about how irritated I am that “everyone” seems to know of BRCA mutation, but no one does of PTEN and it’s JUST AS SERIOUS AS BRCA!  (I would like to add here though that any medical condition that causes a woman to be at high-risk for breast cancer  is serious, whether it is a 10% lifetime chance or 88% lifetime chance.  But, anyway…)

I made it through the appointment with flying colors (haha) and then got dressed and went along my way.  As I was going to my car our entire conversation really struck me:  How thankful lucky I am to have been diagnosed as quickly as I was.  Can you imagine if I had Cowden Syndrome and yet didn’t know about it yet?  Regardless of zero family history of cancer.  What about all these women who are getting tested for BRCA mutation and yet PTEN mutation is conveniently being left off?  I really feel that Cowden Syndrome really isn’t as rare as the numbers say, and that is paralyzing for those who have it yet either aren’t diagnosed with it, or are diagnosed later than they should be, or have had multiple cancers (breast, thyroid for example) and that is not coming up on anyone’s radar?

Gosh, I could go on and on about this of course.  My hope and prayer that at least one person will be educated about PTEN mutations via either my story, or another’s who has found their voice to shout!  (NOTE:  the employee did say, “Thank you for educating me about that” which was really nice.  Those types of conversations really give me strength to keep writing, because validation.)

PS:  Please visit my link and consider supporting if you can.  Every bit helps!  ❤ Thank you.  Let’s all bring awareness for PTEN mutations.

Daily Prompt [Inhabit]

Part of me feels like I inhabit only doctor offices and hospital rooms. Because Rare Disease.  (A virtual contact of mine said today, “It kind of feels like you’re going to the mechanic.”)

In actuality though I have my room; my own private escape from all things medical.  What can I do to make it more mine:  I have dark curtains and a few stuffed animals and books.  Always books. But that’s it.  I want to make it more homey, inviting, etc.

PS – Please check out my Teespring storefront while you are here.  Thank you! ❤

What else would you recommend for me? EDIT: This photo is from the Internet. Not my room but I love this! 😉

Daily Prompt: Hospitality

Am I the only one who saw “hospital” first?  No?  OK, then.

I laugh that I draw that conclusion.  But, you can’t blame me.  Out of all my hospital stays, many of them weren’t very hospitable.  I felt no hospitality whatsoever.  🙂

I could write stories of my experiences, and in fact I have many times.

One of my (many) wishes would be to talk to every JERKY nurse, doctor, technician I have come across since diagnosis and give them a piece of my mind,  tell them off, sincerely ask them why they are in the medical field.  If you don’t have one ounce of compassion in your soul, DO A DIFFERENT JOB!

 

 

Sometimes, you just gotta

There are some weeks where I don’t have to deal with, or address, anything Cowden Syndrome related.  What a nice breather!

Then, there are other weeks (months) where I feel bombarded with medical appointments, issues, screenings, tests, hospital visits, and I feel overwhelmed and alone.

Three guesses as to where I am today.

Alas, I don’t have the luxury to sit home and stew.  I have to put on my big-girl underwear and deal.

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Dear Readers:  What do you do to get yourself over a slump?  Any suggestions that work for you? As the meme says, I guess I need to “Put on some gansta rap and handle it.”

Cue the gasp

I’m so frustrated right now. 

I am getting plagued again with headaches.

I wake up with one, I go to bed with one. 

And these aren’t mamsy pamsy headaches either. 

These are on par with the post- craniotomy ones I got years ago. Like when I was admitted to the hospital for the 3rd time.

Last night I had to take some Norco, the pain was that bad.

But the pain finally started to subside after a bit and I got ready for bed. I tried to set my intentions for today: I prayed, did some light stretching, put on some vitamin E for my eye wrinkles (LOL) and was looking forward to church this morning. 

Cue the gasp. I woke up with a terrible headache. 

I am emotionally exhausted. 

Is this all I have to look forward to? Life with constant headaches? I demand some relief because I’m way overdue. Period.