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?!

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.

“Sometimes you have to hurt to heal”

A very dear friend, albeit virtual as of today, just said that to me and she couldn’t be more spot on.  Technology, and social media, when used for good can be just amazing!  I am thankful.

So, I am here today on the blog to write about an experience I just had getting my thyroid ultrasound.  (You know, it’s just bloody crazy that I had thyroid cancer and 2 surgeries and we are *still talking about my thyroid (bed) issues!)

Usually the staff at my hospital, yes most of the staff, know me on a first name basis.  (Not kidding.)  But this technician was new and I hadn’t ever met her before.  She brings me in to the room, tells me the deal (which I have memorized) and begins the exam.  She says to me, “So this is the first follow up you’ve had on your thyroid since 2010, right?”

I almost spit up.

I told her this is not my first rodeo and this specific issue alone (the lone random tissue that we can’t seem to find out what it is) I have been dealing with since October 2018.  She hemmed and hawed, and said something like, “Well, if you’re concerned about it we can go check on the computer.”  I told her that she probably *should go check it out because it does not make sense that all of a sudden the computer/my chart has 9 years of my records missing.

Come to find out, the hospital renamed the test from “Thyroid Ultrasound” to “US Thyroid” or some such nonsense, and she didn’t bother to scroll ALL THE WAY DOWN to the end of my chart.

(In April of this year was my last u/s and there was some “issue” in a lymph node, they thought, and even I know you compare to the most previous scan for comparison.  Can you freaking imagine if she compared today’s to 2010 and then on Thursday my doctor tells me, “Oh Heather, there’s a problem.”

I would have lost my ever-loving mind, I tell you.

I am thankful.  I am grateful.  I am thankful and grateful she randomly mentioned about the “follow up since 2010” comment.  Oh boy, I am thankful.

Yes I know I must be responsible for my own health care, but I sure wish I could trust some of these people in this field.

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?

Checking in

Hey friends:  I am still here! It’s been a while, and thought I’d catch up quickly this evening.

  • I had “surgery” on my thumb this week.  5 stitches for my trigger finger.  Blergh.  Not fun in the least little bit.
  • I had my mammo last week, because you know, Cowden Syndrome and high-risk breast cancer risk.  It was “normal”!  #winning
  • Since I just got my mammo I can now try to sort out my screening timeline again since Corona jacked *everything up.  Basically, someone is getting to second base with me every 3 months.
  • What are you watching lately?  I am a relatively new fan of BB (Go Ian!) and have been watching since #BB16.  Still into every single version of #90DayFiance, and just finished another Joe Exotic thing.  I liked this one the most as it followed up on some of the Big Cats Joe abused.  I am now a follower and newest sponsor of one of their residents.  Check out the sanctuary here!
  • Trying my hardest to keep my hope and head above water.  How are you doing in the time of Corona?

 

the fork in the road

I created this blog 9 years ago to document my life living with 2 brain tumors.  Yet, as I sit here this evening I cannot bring myself to write about anything.  I’ve never had a filter here, and I am not purposely holding anything back.  It’s just that I cannot connect anything in my brain to share.  Sadly, things are very active with my Cowden Syndrome and Lhermitte-duclos Disease.  I had a visit with the ENT last week to talk about my tinnitus.  I could write about that at some point, I suppose.

So, what should I do?  Retire the blog?  Move entirely to Twitter since short blog posts are more my style (at least I prefer to read short blog posts).  Is anyone still here?  Would love to hear if anyone’s still here with me.  This whole “Content Creator” trend definitely isn’t how this blog began.  Unsure if I can make the transition.