Through the other side

Well, folks.  I made it through the hearing.

I have refocused my thoughts since then to positive ones, but believe me, it’s very hard.

When I walked out of the hearing room I broke down.  From the pent-up emotions, things the judge said, my stress, everything.  I just lost it.

But, in the time that’s passed I keep reminding myself that: I DID MY VERY BEST.  There’s absolutely no point in rehashing what I “wish I would have said”.  I will hear the judge’s decision in 30 days.

I am repeating to myself a mantra:  “I am health.  I am wealth.  I am love” – which translates to: I don’t want breast cancer.  I want to be financially stable.  I want significant love in my life.

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Thank you everyone for your prayers and good thoughts.  I am envisioning success!

 



 

Hey everyone!

Why does the word “everyone” look weird to me?  Like I spelled it wrong?

Anyway.  I just wanted to check in with you.  I know I’ve been a bit sporadic with posting.  Some days, my life is pretty basic and boring:  I go to the gym and read (true story).  Other days I am overwrought with medical appointments, scans, almost daily migraines, problems with my esophagus, etc. and I feel like a weirdo (also, true story).  I try to stay busy and distract myself with things that are beneficial for my mental health:  I love listening to podcasts (do you recommend any? I just finished this one and HOLY COW! I could write more on that soon); volunteering; reading (obvi); editing photos on Hipstamatic.

Of course, I didn’t ask for this life of brain tumors and hereditary cancer syndromes.  Nevertheless, it’s mine.  My point of writing is that this week I finally have my disability hearing before a judge.  To say I’m terrified would be an understatement, you know?  I have this weird feeling in my chest:  Anxiety, obvi.  But, I can still vividly see and feel and hear my diagnosis of July 18, 2011 as if it were yesterday.  Literally.  And, it’s like my entire life since that day is rolled up into a big ball and this week it’ll come to a head.  Like, what is the purpose of my life since then?  It’s been 6 1/2 years (just 3 1/2 years for the disability process alone) and have I been wrong all along?  What will this judge think?  Is there enough “medical evidence” to prove to the judge that I am different now and can no longer work?

I pray that there is.

I’ll be in touch soon.  If you have any extra prayers, please send them my way, and to the judge too.  ❤  Thank you.

Links of reference

If you don’t already know, I have a place on my blog where I’ve gathered links of PTEN/Cowden Syndrome information.  I also wanted to share that there is a PTEN Hamartoma Tumor Foundation website:  Please visit it often!

Thank you!

Quiet

I know I have been pretty quiet here as of late.

I wish I could say it was because I had nothing to write about.  Unfortunately, that’s not the case.

Next week is my disability hearing.

I have worked so hard to stay positive and hopeful.  It’s a moment by moment deal for me.  I find ways to distract myself when I start to stress out about what’s going to happen before the Judge.

Working on keeping my head down and plugging along.

I’ll be back very soon.

 

 

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.

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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.

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.