With humble thanks

I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet.  I do try to focus on the positive, yes.  But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day.  (I’m not discounting the hardships other people face.)

But, I digress.

Trying to steer this post from being “too ranty”. hehe

Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related.  Someone reached out to me and suggested I get in touch with this organization.

I got on that in a hot second.

To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way.  My life is hard.  I’m alone.  I’m managing my life as best I can but forced to depend on my family, which is limited at best.  How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.

Anyway.  I contacted Mission 4 Maureen immediately.  By their grace, I was granted financial help.  Thank you Mission 4 Maureen!  Thank you for what you do to help those of us living with brain tumors.  And, I ask you dear readers:  Please visit their website.  If you do Facebook, please consider “LIKING” their page and support them in any way can.

I thank you sincerely.

 

Can’t stop thinking about it

I wasn’t going to write about this but since I can’t stop thinking about it, I suppose I should.

I was at the dermatology doctor a few days ago.  (I won’t go into the melanoma risks with Cowden Syndrome right now.)  When I exited the elevator and headed to the check-in window, I heard a loud male’s voice.  I could tell immediately that he was irate about something and was on the verge, if he wasn’t already, of making a scene.  The waiting room area is quite large, so I stayed far to the other end.  Come to find out, he was at the exact window I needed to be in order to check-in.

I made eye contact with one of the staff (who are protected behind a plate glass window, but whatev) and she said she could check me in for my appointment.  The man continued to yell, and I told the receptionist she needed to call security.  She did.

Then she finished my check-in steps and I was finished.  Yet, the man was still where I needed to be and he was still yelling.  I heard another female staff (I assumed a manager-type) trying to talk with him to calm him down.  I heard her say, “Do you need to go to the ER?” and then I heard her say, “If you keep saying things like that I will need to call security.” This guy then really escalates and starts yelling such vulgar and disgusting things (about) one or all the girls behind the plate glass window.

I watched this all unfold as the manager came over to the window I was at and asked the receptionist to call security.  I walked back near the elevators and restroom, and was wracking my brain of what I should do.  Hide in the restroom?  Get back in the elevator?  I didn’t know where the stairs were off hand.  I saw a young man with 2 little toddler girls by the restroom. I told him to get the kids away from the area because a guy was making a scene.

So, all this is playing out in slow motion for me.  I’m getting anxious now as I write this.

What seems like a second later, I see the security guard come off the elevator.  I told him, “Go that way!” and no sooner do I say that the irate man and I are face to face.  I leaned towards the right and bee-lined around him.  I heard the security guard say, “I need someone to tell me what’s going on here.”  And the nice man with the 2 toddler girls said something (helpful) as well, but I was already gone.

I walked over to the window (where I normally would have checked-in) and I said to one of the girls, “I don’t want to be out here.”  She buzzed me inside the doors and I waited there for a minute or 2 before she took me back to the exam room.

I couldn’t speak as I got to the exam room. I told them they probably didn’t want to take my blood pressure as it’d be through the roof.  I’ve never felt so vulnerable in my entire life.

 

New custom item!

Check out this link to see some new items in my storefront.

I am very thankful for your support.

I do it and I do it well

I criticize every single person when they do it wrong.

When I write “wrong”, I mean violate my privacy.

Maybe I should worry about your privacy too; however, I wish you would worry about your privacy. When I am standing behind you in line at the doctor and hear your address, telephone number, birthday, your mother’s maiden name, your temperature, etc. being shouted by you or the office staff, do you realize I could be recording you!  Who knows what or where that information could end up?  Of course, I’m not recording you.  But, there are bad people everywhere.

I have complained many times and to several different people (managers, administrators, etc.) at the hospitals and doctor offices.  Nothing has changed. What has changed is me.  I know enough to not shout my home address and birthdate for all in the waiting room to hear.  I now write down my address or birthday and give it to them through the window.  That works for me.  That is how I handle my privacy now, because no one else gives a rip.  Trust me.

I now criticize a little less than before.  And I mean a very little.

 

This isn’t a Wordless Wednesday

I just am missing Disneyland and Disney’s California Adventure something awful! 😦

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Updates

I think I have posted some crowd funding links here in the past.  But, there have been a few changes to the links so I wanted to do a new post.

I created a storefront on Teespring a while ago.  I created custom t-shirts that have a two-fold purpose.  They can be conversation starters:  “What does ‘Ganglio What’ mean?  What does CHAMP signify?”

Maybe you don’t know the answers to those questions technically, but since you read my blog (hopefully continue to do so, hehe) you could say, “Oh.  A friend of mine has a brain tumor called Gangliocytoma.”  OR, “I follow a girl on Twitter who’s username is @ZHeatherChamp and I think she’s a champ too!” (insert smiley face here.)

If you bought one of those shirts you are helping bring awareness to my blog.  Which in turn brings a conversation about Rare Diseases.  Or brain tumors.  Or hereditary cancer syndromes.  Any of that!  Or all of that!  Win, win right? (Reason #1)

Reason #2, which is kind of a big deal, too.  I receive part of the purchase price to help me navigate my medical bills.  I won’t rehash the trauma.  It’s real and it’s bad.  😦

Thank you thank you thank you!  I’m forever grateful.

 

February 1, 2017 Daily Prompt: Resist

I have tried to do these things in the past, but since I’m not a writer I don’t do them all that often.  I wish I was a writer, and could write eloquently and express the things in my heart.  I usually just mush everything and end up writing the way I speak. #fail

Anyway, I saw the prompt for today and it resonated with me.  Time to pick it up and be the Blogger I only dream about!  🙂

Resist

For years after diagnosis, I resisted everything.  I don’t have brain tumors.  I don’t have a rare hereditary cancer syndrome.  I don’t have to go to the doctor all the time.  I’m not high-risk for breast cancer.  These brain tumors will not grow.  Resist.  Resist.  Resist.  

Only today, almost 6 years after diagnosis, am I starting to get a glimpse of acceptance.  Resistance is futile.  Especially when you have a sketchy medical status.  I can no longer resist what is.

I have 2 brain tumors.  I have Cowden Syndrome.  Resisting the reality of that is a recipe for disaster.  My life has been a disaster and continues so.

Today, I tell you I will try harder.  I will do better.  I will stop resisting.

Today.