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.

I’m just plain sad

Years ago, I started to accumulate items for my Hope Chest.  Now, granted, I didn’t have one (nor have I ever had one),  but I sure wanted one.  And, I sure wanted the items that you’d store inside it.  Slow and steady, I started gathering items I was sure I’d need one day: baby clothes.

Well, today I stumbled across said items in a bag shoved under my bed.  Onesies, Christmas baby socks, newborn Halloween clothes.

And my heart broke a bit.

I realized that pretty much the only dream I ever had will not come true.  Cowden Syndrome robbed that opportunity from me.  Even if I just had the brain tumors, maybe I could have been a mother.  But, since Cowden Syndrome is a hereditary cancer syndrome, (Note:  Cowden Syndrome isn’t listed on that link.  #FAIL) there were outstanding odds I would pass this condition to my child.  (Even if I had had prospects for marriage, but that’s another thing entirely.)

But, I guess my point is:  I thought I had pretty much resigned myself to this fact.  The chance for motherhood will never be mine.  (The Chance).  No guarantees, I get it.  No way to know the future, sure.  But, even as I eked out my late 30’s, I still had a tiny bit of hope that I could be a mother one day.

So, in pondering about this tonight…I guess I am OK.  I thought I had done well with this whole thing, but seeing those baby clothes this morning brought up some angst that I had hoped was well hidden.

It wasn’t.

I’m sad.  I’m lonely.  I’m alone.  I’m just plain sad.  Sad that I know what Cowden Syndrome is.  Sad that I know what Lhermitte-duclos Disease is.  Sad that this is my life.

I’m only acknowledging this here.  I try to put the hard, nitty-gritty stuff here.  And, then get up and take care of business.  Volunteering, continuing strengthening my spiritual self, living my life the best way I can.

Sleep will be good for me.  Tomorrow is a new day.

I will work hard on leaving the sad here.

Goodnight.

 

 

This week, Part 1. Can I get a reboot please?

Hi guys.  Man oh man.  I can’t believe this week has finally ended!  I’m bummed, but thankful.  I had such high hopes for this week.  Remember this post?  Well, all heck broke loose right afterwards.

Monday:  I went on a road trip (see this post), and it was something I was looking forward to for months.  I found a neat place from Yelp, and had nothing else planned!  I had an entire afternoon and evening that was all mine!  Nothing on my schedule had anything to do with brain tumors or cancer syndromes.  I explored a new city.  I found a neat thrift store and bought a few books.  I went shopping.  Found a place to have dinner.  It was so incredible.  I didn’t think about that night at all.  I treated myself to frozen yogurt.  I went back to my room and watched America’s Got Talent and started to read one of my new books.  I stayed up late.  I woke up early.  It was grand.

Tuesday:  I explored a few nearby cities a bit more.  I found an incredible doughnut place and ate the most incredible Salted Caramel doughnut known to man.  On my drive home I found a small place to eat sushi.  I was looking forward to enjoying my drive home.  Then, the bottom fell out.  My mom called me and said she had a missed call on her cell phone from the “Advocacy” firm representing me in my Disability claim.  (No one from the office called MY cell phone.  No one from the office had/has contacted me since mid-June.  My hearing is AUGUST.)  Within a few minutes I received a text message from the office stating I need to call them urgently.  (NOTE:  I have e-mailed the firm many times since June.  No one has responded.  I have called my “Case Manager” and left many voice mails.  She has never responded to my calls.)  Of course, I called the firm.  I got her voicemail.  Are you surprised?  I’m not. I checked my e-mail in the midst of this I also received an e-mail message from said firm. In it, they said that since they have been “unable to get a hold of me” they will delete my claim from SSA if I don’t contact them within 10 days.

I called the firm AGAIN and bypassed the system. I  demanded the operator transfer me to a live person.  I didn’t give a rip that my “Case Manager” was on the phone.  After waiting several minutes on hold, she came back to me and said that no one was available to help me. I explained to the operator the notices I had just received via text and e-mail. Didn’t matter a damn bit.

I lost it.  I was in a strange city.  In a strange place. I pulled over and parked at a random store. I sat at an outside table crying my eyes out.  Feeling hopeless and suicidal.  This is the firm I chose to represent me in the biggest and most important point in my life (applying for Disability).  And this is how they are treating me.

To be continued….

Beyond BRCA

Have you heard of the BRCA gene?  Have you heard of the medical decisions Angelina Jolie made a few years ago?  If you’re on Twitter, I can tell you there is quite a lot of discussion about BRCA and hereditary breast cancer.  However, there isn’t much about PTEN mutations, and I want to change that.  Granted, PTEN is rare and doesn’t occur as often, but it’s just as serious.  I carry a “faulty” PTEN gene, which also increases my risk for breast cancer, not to mention many others.

I am very excited to share this from My Gene Counsel and I hope you will take a look at this link.

Sickness, be gone

I want to write something funny and witty.

I want to write about how good I feel; how positive I am; how much I have thrived lately; all in all having a grand time with life.

But, it’s not happening.

I am so sick.

Going on 4 weeks of coughing my brains out.  Up every night at 2 AM and it does. not. stop.  My ribs hurt.  My body hurts.  My back aches.

The inhaler and the mondo cough syrup doesn’t touch it.

I could muster everything else but for this cough.

It’s breaking me down.

You know, how when you feel crappy and your immune system is taking a beating part of you just wants to lay in bed all day and watch your stories?  I have done a bit of that.  Trying to rest and recover.  Waiting and praying for the recover part to eventually kick in.

But, I’m being brutally honest here:  I haven’t forgotten that I have a hereditary cancer syndrome.  It’s taking every ounce of strength I have to NOT look online for, “What are the symptoms of lung cancer”.  Call me crazy?  Sure.  Call me a worrier?  Yes, I’ll admit that to a point.  Look at my history and you’ll see why.  But, I am writing to hold myself accountable that I AM NOT GOING TO LOOK ONLINE FOR THOSE websites.  I have not.  I will not.  It doesn’t matter that “that type of cancer isn’t on the books” (like not needing an EGD before, but I digress), I’m a human being with feelings and fears.  My body has let me down in the past and I struggle to keep it healthy presently.

There is no evidence supporting I have lung cancer, and I don’t even know if it starts with a cough.  There is evidence supporting tons of other things, but not that.  I’m writing all this mumbo jumbo to try and stay calm and focused on healing.  Period.