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The EGD that wasn’t supposed to be

Every time I go to the hospital I swear it’s going to be different.  (But before I start my story, what is it about the hospital staff SHOUTING MY PERSONAL INFORMATION OUT FOR ALL THE WORLD TO HEAR?!  “ARE YOU STILL AT XX?”  WHAT IS THAT ABOUT ANYWAY?) I thought hoped prayed yesterday would be different and that at least I would have good veins.  Good, healthy, freaking, FAT veins in my arms that a needle would slide right into.

Ugh.

But, alas.  No.  Nope.  Didn’t happen.  Even with all my meditative mantras of, “Good veins.  Good, healthy veins.  Good veins”.  While my veins didn’t cooperate yesterday and I did have to have the IV in my hand (UGH!) I had 2 great nurses that were amazing.  That’s pretty rare.  I was very thankful and very lucky.

I was pretty drunk when I got to the hospital so that helped with my anxiety.  Luckily mom was there too and she could help with the weird questions, “Did I have any loose teeth?” and after I finally got settled with the IV the nurses wheeled me into the procedure room (is it called an Operating Room?  I actually don’t know!)  But I stayed in there forrrrrrrrrrrrever.  I don’t know if time just stood still, or the doctor was late, or what.  But, he finally came in but I hardly recognized him.  (Thanks Ativan!)  He asked me some questions but I don’t really remember them.  I told him that I stopped eating bananas and the horrific GERD decreased about 95%.  He thought it was the Ativan talking but I swear.  If you have acid reflux, stop eating bananas and see if that helps you.

The other technician put a plastic thing in my mouth and strapped it behind my head, and I remember the strap hurting my scar so they adjusted it.   I remember one of the other nurses showing me a picture on her phone of an operating room with Jesus Christ looking over the shoulder of the surgeon.  That was really nice to see and a nice visual before I went to sleep.

The next thing I remember I’m in the post-op room and my mom and I are waiting for the doctor.  I must still have been pretty drunk, because when he came in and said, “Biopsy”…I couldn’t wrap my head around that.  I mean, it’s not that big of a deal compared to brain surgeries, but when I saw the paperwork that said, “Multiple polyps”, and he asked my mom who I follow up with (oncologist), I kept pushing him on “HOW MANY POLYPS WERE THERE?”  He wouldn’t give me an answer.  Oh, balls.  Because when I had the colonoscopy and EGD 2 years ago I had 3 total polyps.  This was kinda a whole new ball game.  AND, if you were wondering, I’m not here for esophageal ANYTHING.  So, let’s just get that clear right now.

As I have told my mom all day today (and the end of yesterday), my throat hurts like, “A mother effer”.  Luden’s cough drops don’t do a darn thing for this sore throat.  I’m not thinking the worst.  I’m not thinking about all the cancers not yet documented for Cowden Syndrome.  I’m not thinking about tumor suppressor genes and what havoc they can wreak on bodies.  I’m actually thinking about how when I went to Chick-Fil-A for lunch today I didn’t get fries and I haven’t had chocolate at all today.

I’m here for THAT!

PS, Remember that one time when this happened?

Rare Disease Day 2015

If you would have told me July 28, 2011 (the day after the first craniotomy) that on this day I would be working out with over 40 people and coordinated a week-long Rare Disease Day event – I would have told you to stuff it.  There’s no way I ever could have imagined today…even on my best day after brain surgery!  This was my first event but I tell ya – I’m hooked!  Look out 2016, hopeforheather is coming for ya!

Together, with the help of the exercise studio I work out at and the support and generosity of friends, neighbors, and family we raised $434 for Rare Disease Awareness! The money will be donated to  Global Genes Project and PTEN Foundation.

There’s so much running around in my mind that I don’t know where to begin to write.  A humble thank you will have to suffice for now.

A dream is a wish your heart makes…

…or, is it?

Have you ever had one of those dreams that grosses you out SO much that even 10 hours later from waking you are STILL getting chills?  Well, I had one of those last night. I am trying to work it out, and my mom brought up some interesting points that I think are on point.

I dreamt I was stung by a bee.  I’m not allergic, thankfully, so it wasn’t a huge deal in my dream.  But, I remember it stinging.  (Ewww.  I’m getting the chills AGAIN as I’m typing this!  What the crap?) I went to pull out the stinger and as I did I pulled out all this other crap, kind of like a stick or something.  And, it kept coming.  And, coming.  And, coming.  And, coming.  It wouldn’t stop.  It was long, thin, and gross.  So, effing, gross.  I woke up grossed out.  I know I’m writing gross a lot.  Believe me.  It was.

I looked online and found some sites about dream interpretation.  Here’s one I found interesting:

Another reason that you might dream of being stung by a bee is because you think that you have had a string of bad luck. Bees usually represent good luck, and the payoff of industrious labor and hard work. So when one of these positive symbols comes back to bite you, it can honestly be a little confusing. You think that despite your hardest efforts, things just have not been going your way in life, but you can’t exactly figure out a way to change things for yourself and it is really affecting you emotionally and mentally. Don’t let yourself fall down this road. Instead try to figure out how you can make yourself feel a little better. And change your luck for the better.

I am a bit speechless.  I mean, come on.  Have you been reading my blog for a while?!  Couldn’t I have written that on the dream interpretation page about my life?  Rest assured, I didn’t.  But, I probably could have and titled it, “hopeforheather”.  So….

I get it, kinda.  I mean, I am working on many things to make myself feel better:  Exercise, therapy, volunteering, learning how to advocate for Rare Disease in person and on Social Media.  Mom said that maybe the “sticks” represented a type of “poison” I’m in the process of pulling out of me.  Makes a bit of sense, right?  This brain thing is going to be ever-changing, as is Cowden Syndrome.  More processing.  And just today I talked with the neurologist’s office and they want to refer me out to one of the big hospitals for further evaluation.  Cough cough.  So, this is my life with Lhermitte-duclos Disease.  Process.  Change.  If I didn’t know how to tuck and roll before diagnosis, I better learn how to do it ASAP.

 

 

Is this my type of seizure?

There’s not a whole lot more that bugs me (right now) than my brain getting in the way of me doing something I want to do.  Tonight’s to-do item was working out.  My brain said, “Haha, yah right.  Nope.  Not happening.”  And, I wonder if what happened last night was any type of warning…

My mom was cooking bacon, and my brother had chicken in the oven.  A few minutes I told his wife, “The timer is about to go off for your bacon.”

She looked at me puzzled.  “Bacon?”

Me:  Facepalm“Ugh.  I meant what’s in the onion.”

CRAP.  What is going on?!  “I mean the oven.”

Took some Ativan and went to bed.

Today had a nice, big, helping of vertigo while at work.  Ruined most of the day and now my night.

Any brain folks out there?  What do you do when this happens?

PS, I refuse to say that my friend was right.

 

 

 

Jeans for Rare Genes – Local News Coverage

Jeans for Rare Genes – Local News Coverage.

This is what 2 of my virtual contacts are doing to raise awareness for Cowden Syndrome.  Check it out!  I am so proud to say I “know” them!

Have you judged your friend today?

My biggest fear is that someone…you, anyone, will think that I am using my brain issues as an excuse for things.

Not the Cowden Syndrome, but my brain (gangliocytoma and now problems) since surgery.  Tonight, I had a big, fat, “IN YOUR FACE” experience of this.  I had dinner tonight with a friend, a girl who I’ve known for over 4 years.  I don’t know what she was thinking, or why she thought it was OK to come off the wall with me about my life and choices since surgery, but she did.  Did she not think there would be serious repercussions?  She kept saying, “As your friend”…..It was awful.

Initially dinner seemed nice, I listened to her go on and on about her work things.  No problem.  I try not to share my medical things unless someone asks.  I don’t know who reads, or who has, this blog so I figure if someone wants to know the updates they will ask.  If they don’t ask, then I don’t bring it up.  I learned the hard way these last few years that it’s a small group of people in my life that I can trust and really vent to when I need to about stuff in my  life.  No one wants to hear really scary medical stuff.  No one really cares, plain and simple.  Everyone is worried about the next movie or the next whatever, and while I was hurt at first, it’s just acceptance (like I’ve written about before).  Accepting people where they are at. It was a painful process for me, but this blog, therapy, and many other things has really gotten me to a better place of dealing with My Life with Rare Diseases.  Anyway, she and I don’t really talk much about my medical stuff; she doesn’t ask, I don’t offer.  A happy medium, right?

But when she begins to tell me that I’m using my brain and other issues as an excuse to “not live life” or whatever, then I really take issue.  It hit me like a ton of bricks.  Her judgement.  Her condescension.  Her combativeness towards me.  This was off the wall like nothing I’ve experienced in a long time.  I felt so much irritation and disdain from her when 10 minutes earlier I was just listening to her vent about her work stuff!  I was, and am still, so very confused!  She doesn’t know about how I am busting my tail working out, I only began to mention a temporary job I am at for this month, she doesn’t know (didn’t ask) about the abnormal EEG, and began quoting me on things I said MANY MONTHS AGO about certain people and “expectations” I had for them and how they didn’t measure up and I just “cut them” and then blah blah blah……

My head is still spinning.  I wish I would have said, “Your perspective.  Not my business.”  I have no memory of what, or when I said these things. But, first off, don’t friends irritate each other?  Don’t friends say things about one another at certain points in relationships?  But that doesn’t mean they sever their friendship?  I never said that about these friends.  I feel 100% confident that I didn’t say that.  Her comment was, sarcastically, “You don’t remember saying that?” And I responded that I did not. I told her, had she asked, I had an abnormal EEG and have memory problems now with certain things.  She said, “That was before then.”  And I said, “I KNOW.  THAT’S WHY I CANNOT REMEMBER.”

Duh.

Then, in the midst of all this she said that she was fine with this being our last dinner and us not talking for 6 months or something.  I was shocked.  I am shocked.  I am still shocked. Does she know how I am working out?  No.  Does she know how I am coordinating a Rare Disease Day Event?  No.  Has she asked about anything going on in MY life?  No.  This outburst from her floored me.  Really hurt me, very deeply.  Every single fear and insecurity about myself she called me out on.  After I tried to stick up for myself as best I could, I too said I was fine with this being our last conversation too, grabbed a paper I brought to share with her, and left the restaurant.  Deleted her number and texts from my phone.  I’m done.

Before I got home I went by the exercise studio I am working out at and told the owner I needed a pep talk.  She said no one has any right to judge me with my life choices and decisions and that I should not give this person the power to affect my energy.  I am not making it all about me and have tried and am struggling so hard to NOT make it about me.  (That’s part of the reason why I still have this freaking blog!)

To all of you who have friends who have chronic medical issues:  Please do not stand in judgement of them.  Support them and ask them what they need.  If you’re not able to do that, just send them a text, “Thinking of you”, or invite them for frozen yogurt or something like that.  I guarantee that gesture will mean the world.  What I have to do now is work now on “not taking it personal” but that’s really hard.  Tonight, I’m just mad.  The rest will come later.

 

 

Fun Fact Friday 2/13/15

I have worked several retail jobs during my life (many bookstores), but never a department store.  Last week I was at Target and two different people asked me questions about something in the store.

First, a woman and her granddaughter walked by me and the grandmother asked me if I knew where golf balls were located.  The mortified teenager stopped her as she knew immediately that I wasn’t an employee because my expression of confusion was a dead giveaway.

Second, as I was leaving the store a man was about to ask me something, but then caught himself.  He said, “Oh wait.  You don’t work here.”  I told him that he was the second person in about 20 minutes to ask me if I was an employee.  He said, “I saw your lanyard.”  (Which, by the way, was a Disneyland lanyard.  And, NO Target employee wears a lanyard anyway!)

How funny, but how weird?! :)

On dizziness

So, this dizziness thing is getting really old, yet I know I can’t hide from it and I’m a bit scared to accept that it’s happening more and more in different areas in my life.  Funny, as soon as I typed, “Scared to accept” it hit me like a ton of bricks.  All this boils down to is fighting the inevitableI need to accept this, and I’ve known that for quite a while.  I know I am scared, and I know I need to accept brain tumors and all they bring with them.  I am scared of the unknown, and I am scared of what my life will look like in 2, 5, even 10 years from now.  What type of life will I be able to lead with (chronic) dizzy and balance issues?  Thanks for nothing Lhermitte-duclos disease.  Eff you.

Anyway, what is triggering this post is on Sunday at church I noticed a new thing.  I guess there is always going to be “a new thing” with 2 brain tumors, right?  haha.  When I closed my eyes to pray, lowered my head, everything began to spin.  Ugh.  I mean, really.  Now, this?  I am forced to accept that when I’m praying to my Higher Power I have to navigate things spinning?  UGH UGHI can’t even.

Yes, I know that others have it much worse than I do.  I fully understand that.  Yes, I know I have much to be thankful for.  Yes, I know that I am able to still do so much, and I am doing all I can to focus on that:  exercising, volunteering, working when I can, spending time with family, etc.  But, that doesn’t mean I don’t get tired and overwhelmed.  So, that’s why I am thankful I still have this blog when I can write and whine when I need to.  Today I need to.

I don’t know what tomorrow will bring.  Probably more dizziness and vertigo.  And, I sure wish it didn’t.  I wish and wish and wish….blah blah blah.  I guess I need to stop “wishing” for so much and work more on the “accepting” of what is. 

But, I have to own my truth that I am just a bit sad today.