Daily Prompt [Disrupt]

My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling.  Trying to find my balance and inner strength.

I am so very thankful to have gotten through these last few months relatively unscathed.  🙂  The EGD and colonoscopy was rough, but completed.  And then breast MRI was “easier” than I remembered!  The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it. 

Also, I haven’t received a telephone call from my oncologist.  I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.

Today I have errands to run, appointments to complete, and blood to be drawn from my arm.  I best get going and I hope you all have a great day today!

Advertisements

update

Hi everyone: I made it through the colonoscopy and EGD! It was a rough time; I’ll be very honest. So glad it’s over and now can move on to the next appointment on my calendar.

The GI doctor (whom I love!) biopsied 4 polyps in my colon and told my mom that my esophagus looked even BETTER than before! You may recall that my esophagus is “carpeted” with polyps and a few years ago I was referred to a specialist as there was talk about an esophagectomy at some point.  You can read about that fun time here.

GAH.

I’ll take this news as a small win and will be in touch soon.  ❤

 

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.

President Hinckley

He has been on my mind today.

Did I ever tell you that before my dad went on his mission he was interviewed by President Hinckley?!

There’s a quote that always reminds me of him – “Forget yourself and go to work.”

Here’s the back story of that quote if you’d like to read it.  🙂

So, that’s what I did today!  I (tried) to forget myself and went to work.

Yesterday I had the consult with the GI doctor regarding my next colonoscopy and EGD.  I’m not looking forward to it to be completely honest.  I also got a call from the pharmacy yesterday that my insurance doesn’t cover the prep and my co-pay is $100.

Yah, that’s not happening.

I made some calls this morning about another option for the prep and then spent all morning searching online.  Searching for “work from home” jobs (legit ones, obvi) and any other “side hustle” jobs out in the world.  (Could I drive for Uber Eats? Or Go Puff?) 

Suuuuuuure I could.  If there were any available.

My point being this:  I had a very rough day yesterday, ending with the doctor appointment which always brings up my PTSD, etc.  I slept relatively well last night and got up today and tried to be productive.

Granted, nothing developed from my searching.  But at least Heavenly Father saw that today I was trying.  I really tried hard.  And, even felt “good” to boot.  🙂 so here’s to another good day tomorrow! 🙏🏻

Daily Prompt [Insist]

I’ve read different blogs for about 30 minutes this Saturday morning.  Trying to understand what I am feeling, or at least distract myself from what I am feeling.

Some mornings I awake and think to myself, “I should write today.  There’s so much anxiety coursing through my veins, I need to get it out.  I need to cry, scream, rant, process it all here.  I am actually quite nervous about my breast MRI next month.  I wonder if this will be the day I get the news?  Will I hear the “C” word that day?

Then I have my consult for my colonoscopy and EGD this month.  My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see.  So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them?  OH, I CANNOT PAY THEM.  That’s right.

And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy.  And, I had 2 job interviews these past 2 weeks and didn’t get either job!  What gives?  Why can’t I catch a break?  My life sucks and I cannot get my head above water.  I feel like I am drowning, literally.  I don’t insist on much.  Really.  And now, I don’t hope too much either.  I’m tired of the stress. When will it end?

Whoa.  As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”

Daily Prompt [Tend]

Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD.  I always tend to wonder, “Is today the day I get diagnosed with cancer?”

I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days.  My life now will never not have any medical/doctor type things in it.

I must remember to B R E A T H E through the anxiety….

Mid-October?

Wow.  I can’t believe this month is already 1/2 over!  That’s so crazy.

I was looking at my calendar this morning and was a bit overwhelmed with all I have going on:

  1. Colonoscopy and EGD
  2. New therapist appointment
  3. Endocrinologist appointment the end of the month
  4. I had 2 different Neurology appointments scheduled, and they both fell through.  (It’s mildly concerning to me since I am living with 2 brain tumors and have had 2 craniotomies.  But, I digress.  For another post.)

I guess my point is that I’ve been forced to learn how to advocate for my health.  And, that’s one of my biggest takeaways since diagnosis of the brain tumors.  I get to share my experiences with you, and hopefully at least 1 thing I’ve experienced these last 5 years may be of some help to you.  To someone.  Somewhere.  That helps me feel that none of my medical experiences have been for naught.

I could tell you horror stories, and rest assured, I will continue to share them.  (Gross negligence of privacy issues to start.)

But, not tonight.  I am still traumatized from the colonoscopy and EGD last week.  I’m still irate for not being able to see a neurologist.  However, the main thing is even though I must endure numerous screenings and procedures (and those aren’t going away any time soon), I will not tolerate unacceptable behavior.  I will not waste my time waiting in exam rooms for doctors who don’t listen to me.  This is my life, this is my health; if you’re not meeting my medical needs, I refuse to endure and I will move on.

I never would have done that in my previous life.  I would have just gone along with things, because I had to.  Well, you know what?  I don’t have to do anything.  I don’t have to do anything I don’t want to do.  Has the diagnosis of Cowden Syndrome and Lhermitte-duclos Disease made me stronger?

Hmmm….

(Thankful)

I know how important it is to have a grateful heart.  I read about it all the time.  And, especially this time of the year it’s vital, right?  With that being said, I could start this post with all the things I am worried about:

  • My brain
  • No income to cover my bills; being destitute sucks and is so scary!
  • My gait
  • My health (covering it all)
  • My future (which will be covered in another post)
  • Status on Disability
  • My car
  • The next colonoscopy
  • The next EGD
  • The next mammogram
  • The next breast MRI (if I can fit into the machine)

Or, I could make a gratitude list.  We have all heard about them, right?  Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend.  Here are just a few of mine:

  • My nephews
  • Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
  • The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
  • My cats Kona and Tigger
  • Same car (as above) – thankful it presently runs
  • Hearing the birds chirp in the morning
  • Food in the cupboards
  • Water to drink
  • Books to read

This list isn’t all-inclusive; I could go on and on.  But, I knew it was important for me to get a few things written so I have them to look back on.  This Thanksgiving was different for me.  It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different.  But, that wasn’t in the cards.  I tried to make the best with what I had.

Funny.  I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease:  it’s not ideal; it’s not the one I would have planned; I would have preferred something different!  How ironic is that?!  Gosh.  As time goes on, and as I continue to write, I see more of these analogies of my life.  But, here’s the most important line and I almost skipped it over.  I tried to make the best with what I had.  Presently, that’s really hard.  (See worry list above).  I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now!  Sheesh.

Well, I began this post wanting gratitude in my heart.  I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders.  I wouldn’t be where I am today without you.

I’m not a good housekeeper, apparently

  1. I haven’t forgotten about Fun Fact Friday.  Just haven’t had any fun Fridays lately to write about.
  2. I DID NOT HAVE ANY POLYPS THIS LAST COLONOSCOPY!  In all my anger about not having the endoscopy I forgot to mention that GREAT news.
  3. I love to do genealogy.  After church today I spent 3.5 hours in front of my computer.  Doing it all.  I couldn’t get up from the computer.  It was if I was literally pulled to it.  AND, I found 2 of my mom’s ancestors that WE DID NOT KNOW ABOUT.  This tells me something, big time, about how much our ancestors want to be found.  Maybe in another post I’ll write about it.
  4. Here is a quick update I did on my GoFundMe page just now.  I love social media in all forms, and there are different audiences in each that I can reach.  Awareness; advocacy.  It’s all the same to me. It’s about getting rare disease stuff out there.  To the people.
  5. More on this post title:  It was play on words about “Housekeeping” on my blog.  As in a quick catch up.  In other news, I’m not going to post a picture of my room.  You’d see that “Bad Housekeeper” is written in my room, too.  🙂

 

You know it’s a bad thing when…

the anesthesiologist gets called to do your sedation for the colonoscopy.

I SWORE that this time would be different.  I SWORE that I was going to get the hospital calm, relaxed, and meditative.  WHY WASN’T TODAY different?!  Every procedure/surgery I have had has been laced with drama, tears, incompetent staff, rude doctors, etc.  TODAY WAS SUPPOSED TO BE DIFFERENT!

Two years ago I had an EGD and colonoscopy.  Since I just been diagnosed with Cowden Syndrome the year before, I needed some baseline tests.  I hoped that today would be like last time.  Meaning, since I had 3 polyps last year and some were found via the EGD, and in after talking to both my oncologist and primary doctor, I was under the impression that I would have BOTH procedures this morning.  BOTH.

Now, this post talks a bit about what happened a few weeks ago.  Why did I assume that all would be OK today?  Was I supposed to call the GI Clinic to confirm the EGD when Dr. L and Dr. B both doctors confirmed for me?  No.  I shouldn’t have to do that.  I shouldn’t have to micro-manage all these people in all these clinics to do their freaking job.  It’s hard enough for me to manage what little control I have over my own  life.  It should be crystal clear why I have control issues!  This is MY LIFE.  MY BODY.  I expect these people to do their job.  Period.  And, when it comes at the expense of me, or my wasted time, I DO NOT CARE FOR THIS ONE BIT.

Mom and I get to the clinic:

NURSE 1:  “What are you having done today?”

ME:  “EGD and Colonoscopy.”

NURSE 1:  Looks at paperwork, “Ummmmm…..”

Cue ALL THE WORLD COMING TO A HALT HERE!

I lost it.  I literally and absolutely came unglued.  All over their place.  (My Blood Pressure was 145/110).  I can’t begin to express how angry I was!  Why wasn’t the EGD scheduled?  “Because they didn’t authorize it.”

WHO THE EFF IS “THEY”?!?!?!?!?

It was the GI Clinic’s fault.  But, oh remember when I talked to both doctors on my team and they said I was to have it?!  I was so pissed off.  I was cussing.  I was making a scene.  I called the oncologist’s office while I was in the bathroom after getting checked in.  THIS ISN’T OK!  My time is important.  My voice is important.  Sure, I don’t have to do the prep for the EGD but that doesn’t matter!  No one is accountable for giving me wrong information!  Every clinic was throwing the OTHER clinic under the bus.  Oncology was blaming GI, and GI was blaming oncology.  I even had names of people to talk to and that still didn’t matter.  THIS IS NOT RIGHT.  I’m still ticked off as I am writing this.

Since I am “having symptoms” and 2 years ago I had polyps, I want to know how things are now with me.  I don’t give a flying EFF that this random GI doctor says “the data doesn’t support needing an EGD.”  Didn’t my oncologist call for one?  No one can answer. NO ONE WAS WILLING TO ANSWER OR HELP ME.

Back to this morning:  My BP hasn’t lowered, and my mom convinced me that I had to do this regardless.  No one at the hospital was going to magically help me (what a freaking surprise) and allow the EGD at the same time as the colonoscopy.  When I got into the bed area, changed, and I was still yelling.  My poor mom was trying so hard to comfort and calm me down, I feel bad I embarrassed her.  But, I think she understands my frustration.  I can’t trust anyone to do their job!  THIS is what gives me anxiety. 

I think today was NURSE 1’s first day on the job (at least when it comes to IV’s.)  When I told her that I may be a hard stick, she said, “Oh no, don’t tell me that.”  And she wasn’t joking.  She was serious.  By the way, no one should have joked with me anyway at this point in my morning.  My head is spinning, and all I am thinking about is, “They better not have to do the IV in my hand.  I cannot take that.”  Another nurse comes in.  My mom is rubbing my shoulder.  I hear NURSE 1 say something else that did not help to bolster my confidence in her.  Then, I feel something wet on my arm.

DONE.  I am done.  DONE DONE DONE DONE DONE.

I really had a panic attack.  Not pretty friends.  I hope you don’t judge me.  I am not strong.  I am very weak when it comes to this stuff.  And, I went right back to the bad place and the brain surgeries and that drama.  Then, I went to the chaos with right before the hysterectomy.  All in about 3.5 seconds.  😦  I think my mom was afraid I was in pain.  I don’t think any of the nurses cared.  In fact, I’m mad about that, too.

Nurse 2 or 3 says that she is calling up an anesthesiologist to do the sedation since I am so upset and that doctor can give more than nurses can.  OK, I’m fine with that.  And, it just so happens I passed this doctor it the hallway on the way to the GI Lab minutes earlier.  I recognized her but she didn’t recognize me.  🙂

GI room.  Doctor.  Assistants.  No one told me when they gave me the sedation.  Then, I woke up.

Needless to say, when I got home I started the calls about the EGD.  That is when all the bus-throwing started.

Oncology Office, “GI Lab said you were to have EGD.  We didn’t know you weren’t having it until you just called us.  We talked to X at the GI clinic.” 

GI Office, “Don’t know what oncology is telling you. Don’t know what system they were looking at.  Dr. G (GI doctor who has never seen me before) said you didn’t need EGD so one wasn’t ordered.  We didn’t tell anyone at oncology anything.”

AND – my primary doctor even looked at this “phantom” system and told me the same thing.

What am I supposed to do?  Do you get what I am dealing with here? The level of my frustration? The amount of incompetency by someone, somewhere?  My hunch is it’s all GI’s fault. They messed up.  They dropped the ball.  All because of this random Dr. G (who hadn’t ever seen me before September, so he knows nothing about me or my history).  AND, he better be glad I don’t remember him or what he looks like, because if I saw him somewhere I would give him a piece of my mind.  I AM THE PATIENT.  I AM THE PERSON LIVING WITH COWDEN SYNDROME.  You may or may not have read about this rare disease in a book, or seen “one of us” in school.  But, if you don’t know me or my medical team, I don’t give a crap about you or your opinion.