I could really go without…

another person telling me the following:

“Wow.  You got denied disability?  I know tons of people with less than you who got approved.”

“In order to get approved you pretty much have to have a condition that will end in death.”

(It’s freaking 2 brain tumors.  How much more “ending in death” can you get?)

“Are you working?”

“Are you married?”

“Why aren’t you married?”

Please.  For the love.  Just stop.

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Alone 

Being alone is one thing. 

FEELING alone is something entirely different. I’m still broken about the judge’s decision. I have no hope. 

I sure wish my dad were here so he could give me a hug. 

Daily Prompt: Notorious

My first thought on today’s Daily Prompt is that song.  I mean, COME ON.

Which leads me to…

When I was in middle school, my friends and I thought we were really clever.

When we wrote notes to each other, instead of using our real names we created code names.  That way, if a teacher caught us, or if we lost any of them, we would be in the clear!

My code name was Duran Duran.  I am totally serious.

Another friend was Thompson Twins and a third friend was Culture Club.  (Wait?  Or was *I* Thompson Twins?  GAH.  I have a tin of my old notes from middle school. I am going to go check right now!)

.

.

.

.

.I sure miss those days.

 

 

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….

Is it really almost June?

I was just thinking to myself a few days ago, “Man.  I can’t wait for Fall.”  Coolness everywhere is what this girl wants!

Anyway, I know it’s been a while since I checked in.  Been really busy these last few weeks, which of course is a GOOD thing, but then my “recovery” after the “busy-ness” can take me a few days.  Even after 5 years, I am still constantly learning how to manage my life now.  Granted, I probably wasn’t doing too hot of a job before diagnosis.  Now, add all this to boot?  You see where I’m going, right?  Also, thank you to everyone who shared my crowdfunding campaign.  The deadline is in 4 days and I didn’t reach even 50% of my goal.  Darn.  Maybe I’ll try again another time.

I went out-of-town for a few days this week,  been able to sub for a few days too.  Fitting in exercising somewhere too.  Sometimes, managing the medical stuff really is a full-time job.  I had a few appointments a few weeks ago, so I plan to be writing about those soon.  And, remember when I said I went out-of-town?  Here’s a quick hint as to where I went:

PTNpinkHope you all have a great weekend!

On funerals, dreams, and life

I just got home from a funeral.  A friend of mine died suddenly, way too soon.  He was a young father and it is just such a tragic loss.  Brought to my mind my dad’s funeral, what my funeral would have been like had I not made it through the craniotomies, things like that.  Just a heavy morning.  I know this is part of life, but it doesn’t make it any easier.  I think of my friend’s poor mother (she’s a widow) and the pain in her heart that I cannot begin fathom.  Heartbreak.

I began to see a new therapist a few weeks ago.  Her style is much different than the one I had been seeing, and this one is focusing more on trauma healing.  I like it.  I am on board.  There is such a wide array of things I need to address and heal from, this just fit perfectly. I have had two visits with her, and during both I was brought to tears. Sobbing. I am shocked that five years later I still fight with PTSD from the brain surgeries. Those few minutes before I was wheeled into the O.R. have fundamentally changed me. Dare I say permanently scarred me? I don’t know. But those memories and emotions are still down deep inside me and need to be processed and released. I am very much looking forward to this. What I find rather interesting is a day or two ago I dreamt I was caught in a torrential rainstorm. A huge downpour. Other people were near me, I was trying to find shelter from the rain, I didn’t have an umbrella, I didn’t know anyone around me. I did some research on rain in dreams, there is a connection here. The release of the brain surgery “stuff”, as it continues its course, and the downpour of the rain. Dreams are incredible.

While I continue to notice deficits, headaches, problems with my memory and auditory processing, I am thankful to work in Special Education when I can. I am very blessed to be in these classrooms and interact with the students. They make me smile. The help me focus. They motivate me to do my best always. These students have no idea how much they help me navigate life with brain tumors and a rare, genetic condition. The same goes for the person I am tutoring in English. The same goes for those I work with in my calling in church as Family History Consultant.

Life is weird. Life is not what I expected, that is for sure.

It just is.

Today I marvel

Since June of this year, I have had some type of medical appointment, procedure, etc. over 32 times.

But, today I don’t.  And, I am really thankful that I do not have to do something today (except volunteer) later tonight.  I can shower when I want; get dressed when I want; watch whatever I want (just happened to watch 3 episodes of this in a row.  SO. DANG. GOOD!) – and it’s an incredible feeling.

15 Random Facts About Me.

Just today, as I caught up on my blogroll, I read 3 different blogs that had this challenge.  While I am sometimes at a loss for things to write about, I love lists so I thought I would give this a try…and, FYI…some of these facts I’m borrowing from the posts I read earlier because they apply to me, too.  🙂

  1. The Brady Bunch was my ultimate favorite TV show as a child.
  2. It bugs me when people tweet themselves.  Do they do that on purpose or what?  What do they think when they get their “own” tweet?  That’s almost as bad as people who comment on their own Facebook status.  Just make an additional tweet or status.  Done.  #ICannot
  3. I have never watched one episode of American Idol and I am very proud of this fact!  (Isn’t it finally going off the air, too?)
  4. I do not like it when people write/say/use ‘Merica.  Our country name is A-MER-ICA.  Really.
  5. I have an unhealthy obsession with purses…I must have them ALL!  (But, I have high expectations and certain requirements for each of them, hehe.)
  6. If I had to choose between books or music as my entertainment, I would choose books and ask nicely if I could listen to 90’s music too.
  7. I need a bucket list.  I want to visit Hawaii and Times Square one day.
  8. I want to learn to Portuguese.
  9. I really love to do genealogy.
  10. Sometimes, I forget I have 2 brain tumors.
  11. I hate the words stump, root, and spine.
  12. I always cry at movies where animals die.  Just don’t make it part of the movie, OK?  Thanks!
  13. My favorite movie/musical is Grease.  I bet I can quote the entire movie.
  14. I guarantee I will never bungee jump.  Period.  End of story.
  15. Currently, I see 7 different doctors (not including physical therapy) to manage Cowden Syndrome and Lhermitte-duclos Disease.  I have a very large medical team for which I am very thankful.

If you want to read a few more of these go here, and here.

Because I don’t get it

  • I am in a dire financial situation.  That’s nothing new.  Haven’t worked steadily since diagnosis, brain is getting wonky, balance getting worse, etc.  (I know you can connect the dots from here.)
  • I try to work as often as I can, and that says a lot.  Because between medical appointments it’s rare that I can find a day off and a substitute teaching job on the same day that I will do. (In another post I will write about the woes of subbing for high schoolers and how I must be discerning on the jobs I accept.)  It’s not a day in the park subbing for high schoolers, but I really do love it.  Most days.  🙂
  • Found out that it “may” look bad to the disability judge that I’m working a small amount.  Um, I’m desperate for money.  One needs money to survive.  Thankfully, I can still kinda work, so why would subbing a few days a month be a big deal?
  • Does this mean I should stop working the next 8 months because I don’t want the judge to think, “She subs 1 day a week, why can’t she sub 5?”  I’m only pushing through the bad brain days because I have to!  Why is this so difficult?  I don’t think that working a small amount should be held against me.  Because, who knows how long I’ll be able to sub, anyways?

Not Lhermitte-duclos Disease and Cowden Syndrome (kinda)

I have racked my brain for the last few weeks about something to write about that’s non-medical.  But, let’s face it.  Pretty much my whole life revolves around medical everything or how medical somethings have fundamentally changed my life for the much, much, worse.  But, since I am a list maker, list writer, list-follower (?) I thought it’d be a good object lesson for me to write some things going on that aren’t really brain tumor related.  So, here goes:

  • Saw a nutritionist last week.  She said no more protein shakes after my workouts, and instead to drink 2% chocolate milk.  I’m all for trying something new!
  • This is my birthday week!  Celebrated by getting a fancy manicure and DID. NOT. BUY. the Fossil bag I have drooled over for months (in Mushroom, BTW).  That, there, is growth!
  • Last night I spoke at a treatment center in a Twelfth Step panel.  Quite the experience!  🙂
  • Just before I began this post, I was at the animal shelter in the Cat Rooms.  I noticed that one cat in particular, Rita, didn’t look right.  Her hair seemed wet, and I guess she could have gotten in fight with another one and they could have fallen into a water dish.  But, what’s more likely is that she is ill because I heard that there is a something going around there.  I told the front office staff and I pray they look into it.
  • Been doing quite a bit of genealogy work on my mom’s family line.  I hope to never hear, “Oh, all my work has been done!” because it’s never done!  I love it so much.  I know these ancestors of mine are real people and they just wanted to be found and validated as once living souls on this earth.
  • I am thinking about doing another Booster fundraiser t-shirt.  (Especially since I shrunk mine in the dryer this morning.  #FacePalm.)  Would you be interesting in buying one?  More info. on this soon.
  • My new favorite reality TV shows:  Number 1 and Number 2.  Color me hooked; only for a few reasons.  #1 – because the single, girl in me hopes for love one day, no matter what the way. And #2 – because Days of Our Lives.
  • I have a trip planned in July and I am SO. EXCITED.  Here’s a clue: