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, 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 and also received a message from said firm. In it, they said that since they have been “unable to get ahold 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….
I debated whether or not to write tonight.
Right now, I’m sitting in a strange bed. All alone, pondering my life.
Today I took a mental health day, literally.
I packed up my car and drove for a few hours. Far away.
Here I am.
Grateful. Sad. Scared. Thankful. Hopeful. Worried.
These past five years were unbelievably difficult.
I remember the CT scan.
I remember walking to my doctor’s office.
I remember him saying to me, “There’s something there.”
I remember calling my mom. Then my brother.
I remember it all.
I remember the next 9 days.
I made it through. Somehow.
I have so much to be grateful for.
First and foremost, that I could make this trip.
I want to cry.
I want to scream.
I want to yell.
I hate these brain tumors.
They have robbed me of all that I hoped for my life.
But, I’m here. I’m alive. I’m not done fighting.
I am striving to be more mindful that today is His Day.
At church this morning, the lesson I taught in Relief Society was on the Temple and how to make that a symbol of our membership. It was a great discussion and I felt the Spirit. I am very grateful.
I have several posts half-written still in my drafts folder. About my kidney scan and mammogram appointment, the telephone call I never imagined I would ever make, my thoughts and fears about the Disability Hearing date finally being set (next month!), all added to the 5 year anniversary (July 2011) of my life becoming all this.
Life is crazy. My life is nuts. I continue to strive to enjoy my life. That is such a foreign concept to me now. Enjoy life? I know it’s a blessing to me. Although, it’s been so incredibly difficult and painful these past 5 years, I’m doing all I can to find the balance.
I struggle to stay present. To be in the moment and really fully experience each moment of my day. To not worry (so much) of my financial struggles and really enjoy my life.
This weekend I went on a quick day trip with a friend from church. It was so much fun! Right until I got dizzy. About 1/2 way into our drive the bottom dropped out and everything for me came unhinged. I was nauseous, the car was spinning, just crap. Crap crap crap crap crap crap crap.
My day started out wonderfully, then this happened.
Real talk time.
Heather: This will continue to happen. More dizzy episodes. More balance problems. It’s expected after having your cerebellum dug into TWICE. Relish the good days, and be good to yourself on the bad. Be strong when other people doubt you. You will continue to meet the haters.
Leave them in your dust.
I have thought for the last few weeks about what I can write about. What I can catch you all up on, because life has moved very quickly as of late. Mammograms, kidney scans, dizzy episodes interrupting life, etc.
While that’s a great thing, it’s also sometimes difficult for me to manage.
But, regardless, life happens on life’s terms. I continue to learn that.
I just clicked on a blog I follow, and found out the devastating news. I never met this person, but I was one with her.
I am so sad. I am so sad for her family.
Have you ever noticed that when someone discloses their medical situation (however murky and troubled it is) some people are supportive and think they are Giants to fight their war; and others think they are lying and full of pathetic excuses to not live life?
Better yet, have you considered where you are?