New Fundraiser! Please help!

Hello!  Please check out my new storefront.  I have added more shirts with a variety of colors and sayings.  Each one helps me financially plus helps to bring awareness for both rare diseases I have.

Thank you for your help!



Why can’t I sleep?

Does anyone else suffer from sleep anxiety?  I don’t know if it’s from the brain tumors, hysterectomy menopause, anxiety about my dire finances, depression, being overweight…or if it’s a hot mess from all that and more.

I exercise.  I try to meditate (but let’s face it) I have no idea how to do it or what I’m even doing.  I try to eat a salad a day, but I know I struggle to get enough protein because I don’t know what to eat (I don’t eat red meat anymore).

I have some medications and some natural things I take each night.  But, I usually feel horribly drunk still, the next morning.

Do  you have any tips you can offer to for my nighttime routine?  Do you do anything specific to help you sleep?


This is a rant

Have you ever been so mad that you want to spit nails?  This was me, yesterday.

If you’re the person who goes to the doctor once a year for your check-up, consider yourself lucky.  I, unfortunately, am NOT one of those people.  I go to the hospital a lot.  And, to the doctor.  Because Cowden Syndrome and Lhermitte-duclos Disease.

Yesterday, I was at the hospital for a blood draw.  It was around 1 PM, and I had fasted all morning.  When I first walked into the lab there was no one there.  Not. one. single. person.  Anywhere.  I walked around and asked, “Is the lab closed?”  And everyone assured me it was open.

When I get back to the lab, I see another person before me.  She said there was finally someone there to check-us in.  After a few minutes a man comes out (dressed in scrubs) and said to us, “The phlebotomist isn’t here.  She’ll be back soon.”

I asked him, “What does soon mean?  1 minute or 1 hour?”  I was not rude or sarcastic at all.  I just had another place to be yesterday and I was watching my time.

He said it would be about 15 minutes or so.  So, I waited.  I watched the clock, and after waiting there for 10 minutes (plus there was another person who was before me) I decided I needed to leave.  (Again, I had somewhere else I needed to be).  I popped my head into the back area (as there was STILL no one at the front checking patients in) and I said to him that I needed to get going and I would come back another time.

He said, very sarcastically, “Well there’s nothing I can do about a 3 minute wait time.”

I responded, “It’s been more than 3 minutes and I don’t appreciate your sarcasm.”

Ugh.  I came unglued.

I told him I had somewhere I needed to be and asked him to give me back the paperwork.  (You know, the paperwork that has my birthday, personal information, etc.)

He gave it to me and I walked out.

As I looked at the paperwork, I saw he gave me the wrong one.

When I walked back into the lab (and still, there’s no one at the front desk)…I pop my head in the back and I see him complaining about me to another employee.  Now, of course I didn’t hear the exact conversation.  But, his body language, stance, and facial expression exactly told me what they were talking about.  Me.

I said, “I’m right here!!!!!!!!!!!!!!!!!!” so that he could see me and know that I saw him.

I told him that he gave me the wrong paperwork.  He handed me mine, with my name on it, and asked if I was coming back that day or the next.  I wish I would have said to him, “Well, if you’re working tomorrow then that’s a big fat no.” But, I didn’t.  I said something like, “I’m not sure.”

Here’s the thing:  I have been around quite a few blocks since diagnosis.  I WILL NOT TOLERATE being spoken to as anything less than a human being.  I don’t care if you judge me because I don’t have insurance, or whatever.  I don’t care if you hate your job.  I don’t care if you got a ticket on the way to work or forgot your phone at home.  If you work in the medical field you should have common courtesy.  And, if you do not, then I will raise holy hell to make sure you don’t treat another person inappropriately.

I filed a complaint.

On top of everything else I must manage in my daily life, I don’t appreciate this added stress and disrespect.  I will fight for respect.  Yet, here’s the kicker:  Why would I have to fight for it? Why isn’t it a given in the medical field, you know?

DRAFT from 1/3/2013

This blog serves me so many purposes and it’s given me an avenue to share my story (which includes my hopes and my fears).  There are no judgements, and all I’ve received since I created this blog July 2011 I hope I can give back to others.  Sure; my life isn’t what I thought it’d be at 40 years of age – but who’s life is what they’d thought it be at XX age anyway?  It’s about making lemonade with the lemons you have and all that jazz; learning to dance in the rain…blah blah blah.  I guess it really IS about those things. 🙂

In the new year I plan to write about other things in my life, because let’s face it…my life has pretty much only been about brain tumors and cancer risks for the last 18 months.  But I’m slowly getting it that there IS more to me than my brain tumors.  Once the afternoon of July 18, 2011 arrived and the knowledge of the brain tumors was SHOVED into my life – all the things I thought I could do was shoved down the toilet.

I just want to be heard – I don’t want to be treated like I have the plague.  That’s it.  I suppose this blog is helping me to “be heard” but for the people whom I was once close to….?

Either you are on this journey with me or you’re not.  I’m seeing people’s true colors now and it’s breaking my heart!

That has been one of the hardest things of all of this.  Seeing how people treat me differently.  I don’t share much at all about CS or LDD with real life people, except for a token few (Hi L!  Love you!) – and a few people from my church who I KNOW love me from the bottom of their hearts and do not pass judgment on me.

I know that life is going on – for them and for me.  I know that we all have things going on but it’s just that I still have trouble sometimes.  I have trouble fitting in.  I have trouble connecting with people.  The people I thought were my friends.  Of course I don’t want to bombard them with, “Oh I’m seeing the oncologist today, my neurosurgeon tomorrow, and the OB-GYN on Friday…” because let’s face it.  Who really wants to hear all that?  But even just a, “Hey – Heather how’s it going with things?”  would mean so much.

I’m on the pity pot.  I get to be here sometimes.  This is who I am with what I have on my plate.  Sometimes, I have a lot on my shoulders and I decide to write it all here so I can leave it here and then get on with my life.  I miss having conversations with friends about things.  Conversations – 2 way convos.  I miss it.

These feelings have been on the surface for me for the past little while – and it’s still hard for me to understand all these changes going on.  So, I get to write.  And I get to continue counseling.

You know…with a life threatening surgery last year…I was so afraid that I would be different.

But it has changed me.  I see things differently now. I process things differently now.  This really is the Heather Show now.  And you know what?  THAT IS OK.  This is what I need.

How GOOD it was for me to read this again! (Another from the Draft Folder 2013)

Here’s the blog I was featured on the beginning of the year.  The blog author does great work promoting the incredible stories of those who are brain tumor survivors.


My choice

I know I have the right to choose.  My thoughts, my actions, whether I want to delete a social media account, whatever.

Most days, I try to choose the positive.  I try to choose the happy.  I try to choose the better option.

But today is not that day.

I am thankful to have this small space on the Internet where I can be me.  No holds barred.  Me, as I am.  No filter.

I am beyond annoyed when people tell me, “Oh, you still have a brain tumor?  I thought you had that removed.”

STOP.  Just stop.

If you had made any effort to be a part of my life, you’d know my current situation.  I choose to not share too much on the most common social media platform out there.  I find it more and more comical that people choose to use that for the end-all, be-all, forms of communication.  But, I digress.

Do I need to shout it from the rooftops that I still have 2 brain tumors?  Of course not.  But, I am not sure how to respond; rather, how to hold my tongue, when people respond to me in this way.  I have found as of late that people (even some of my medical team) seem to be judging me.  Judging me, or my honesty, in what I feel and experience every, single, day.  If you’re not living my life, or choosing to ask me, if you find me steering clear of you, you’ll know why.

A brain tumor life is not fun, folks.  The emotional strain, including financial, can be all-encompassing some days.  I will just continue to gain strength to better able choose what’s best for me, until I no longer can.





This week (well, last) Part 2

Remember this post?  Well, let’s continue:

So, I am in a strange town.  Sitting outside a gas station crying my eyes out.  I just found out that the firm I chose to advocate for me in my disability claim is threatening to fire me.  I have worked with them for almost 3 years.  I am utterly speechless.  In the middle of a panic attack, at rock bottom.

I tried to calm myself down as best I could and I decided to call their office again.  (This is either the 2nd or 3rd time.)  I make contact with the receptionist and demand to speak with a live person.  I told her that I’m a client of theirs, I received many notifications just then and that I needed to speak with someone urgently about my claim status.  I was not going to take no for an answer.  This mistreatment of me by them stops.  Now.

A guy got on the phone and I went through the entire situation.  My “case manager” isn’t returning my calls (again, he tells me she’s having personal issues and has been out of the office.  HELLO:  NOT MY FREAKING PROBLEM!) He talks me off a ledge.  Kind of.  He begins to go through my records and tells me, “Oh yes.  You received those notices because you haven’t called us back.  We have called you 3 times with no response.”

ME:  “Uhm, what?  No one has called me from your office since June, BEFORE I got the notification of my hearing date.  When I called the “case manager” when I received the letter she said she “had to call me back” and then I never heard from her.”

HIM:  “Yes, I see it right here.  We called you X, Y, and Z.”

ME:  I begin to freak out.  Wait.  What?  Did someone call me?  Did I forget? I am forgetting things more often lately.  Oh crap.  Did someone call and I never called them back?  What’s going on?

More discussion between he and I.  I push back.  I know no one had called me.  No e-mail.  Nothing.

HIM:  “Oh wait.  I see something.”

ARE YOU SITTING DOWN?  Come to find out this firm as 2 systems to track contact with clients.  In 1 of them there were supposed dates and times of someone “trying” to contact me.  HOWEVER, when he looked in the other system (where they document telephone calls, I guess) THERE WAS NO DATE AND TIME OF CALLING ME SINCE BEFORE JUNE.  You follow me here?

The employee(s) had fabricated (read: LIED) of trying to contact me.  No one ever had.

It doesn’t register to me (then) the magnitude of what just happened.  I played along, answered his questions, he called me the next morning as we went through my medical records.  The last date of service of my medical records they had requested was from 2014.  (?!)  I still didn’t get it.

As I got home, unpacked, I then got sick with the norovirus.  That took 2 days of my life I’ll never get back.

After I began to recover from that virus (which I’m still struggling to fight today, I think) I really began to ponder what had happened with my “representation”.  It didn’t sit well with me.  Something wasn’t right.  Something hasn’t ever been right with this place.  Shoulda, coulda, woulda.  Bottom line:  the initial reason why I chose this firm no longer applied even.

I decided to make some phone calls.  I needed to do some research.  I had made 3 until I finally spoke with someone.  My first question was, “If I get denied at the hearing level, what are my options?”  I realized, after speaking with him, I needed to immediately fire who I had and hire someone new.

I did.