The lesser of 2 evils?

…but right at diagnosis (after the brain surgeries) I had 2 huge fears.  Fears that kept me up night:  that I would have to have the shunt and have to file bankruptcy.

Thankfully, I have avoided the shunt so far.

I met with an attorney today to discuss my bankruptcy options.

I feel: sad, depressed, scared, alone, anxious, and a ton of other emotions that I haven’t yet identified.

No one can tell me what to do.

.

.

.

.

.

.

.

.

But, what do I do? 

 

2016 in review

I just did my taxes and I have to pay $607 in Federal and $120 in State taxes.

I am in shock.  And probably denial.  Is this really happening?

For anyone who’s heard lately of the GoFundMe scams, I assure you this isn’t a scam.  My life isn’t a scam.

My life is a mess.  My life is out of control.  My GoFundMe isn’t a scam.  Please believe me.

I think it’s time to look at bankruptcy.

 

EFF YOU COWDEN SYNDROME. 

EFF YOU LHERMITTE-DUCLOS DISEASE.

 

I hate you both so much.

I know there’s only so many ways:

…to say, “I’m tired.  It’s hard.  I am scared.  I am alone.  I am struggling” because, let’s face it.  That’s pretty much the entire theme of this blog and I have pretty much got that covered.  If it can be said, I probably have already.

But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.

Here’s some things going on here as of late:

  1. Our refrigerator broke.  We have been living out of a cooler for dayzzzzzzzzzz.
  2. I’m dealing with daily migraine headaches
  3. I was rear-ended last week while I was in my car, parked.  Thankfully there wasn’t any damage to my car and I am feeling better now
  4. The unstable man at the doctor last week is still on my mind.  That incident changed me.
  5. My passenger side car door was dinged by an older man.  When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot.  Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand.  When I started to take his picture he quickly de-escalated.
  6. I haven’t done my taxes yet
  7. My car needs some desperate work to it
  8. I had my mammogram yesterday.  Those days are always heavy on my heart.  85% lifetime risk of breast cancer never gets any less scary.
  9. Out of the 2 pairs of jeans I own, one of them is coming unraveled.  It’s quite funny.  No, not funny – sad.

I can go on. But, I won’t.  That’s enough for me.  For today and hopefully tomorrow.

 

Sharing with a colleague about Rare Disease Day and how I’m involved

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.

 

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.

Growing

I’m experiencing a lot more esophageal issues as of late. Pain. Pain. Pain. Getting worse and more frequent.

Thanks to Cowden Syndrome I have an innumerable amount of polyps in my esophagus and part of my stomach. 

Surgery has been discussed. (Not really a fan of removing my esophagus.)

Medication has been discussed also, but one of my goals in this life is to  decrease the amount of meds I take on a daily basis. And you know what? It wouldn’t help the pain. OR STOP THE POLYPS. 

I understand suffering is part of life. 

But where is the joy part? Rather. Where is the joy part for me? 

Am I ever eligible to feel that?

Honestly, it doesn’t quite seem that way.