I suppose it’s a good to focus on other things besides brain tumors and hereditary cancer syndromes. But, to be honest, today isn’t that day.
We had to put my cat to sleep on Saturday. I am devastated. Shredded. Torn up. Ruined. I cannot describe the intense bond I had with this boy. He had been abandoned, and in this past year we fed him and gave him shelter and love. It was only about 6 months ago, when we knew he was losing his eyesight, that we brought him in our house full time. He was loved. So, very loved.
I will miss you Shadow every moment of every day. Until I see you again. ❤
Some of you may know I attend the Church of Jesus Christ of Latter-day Saints. It has been a huge part of my life for actually – most of it. I have several generations of Pioneer Ancestors and am thankful and grateful to have that heritage in my life.
When I began this blog years ago, I did have faith and knowledge of our Savior and His role in my life. It had been tested over the years, or granted, I had been tested. Nothing on par with getting diagnosed with 2 brain tumors, but you get my drift.
Yet looking back, I truly didn’t understand anything. I don’t feel I ever was truly mad at Heavenly Father once I got diagnosed, I just was pretty bleh about my life and everything that came with it. I just didn’t care. About anything. Not anger just indifference. I didn’t care. Period.
Fast forward through years of therapy, life, writing on this blog, etc. I am glad I can now ponder about that time in my life. I am so happy with my decision to start this blog so that time of my life is documented in this small space on the Internet. What I was thinking/doing/feeling/wanting/fearing at the moments of getting diagnosed with a brain tumor and subsequent Rare Disease of Cowden Syndrome are emotions I don’t like to recall often, but glad I can review them if I want to.
Every 6 months my church has General Conference, where the Leaders and Prophet counsel us. It is quite a momentous event and I have been blessed enough to attend 2 (3?) times in my life, once in the Tabernacle and once in the Conference Center (when it was dedicated!). I attended church yesterday and I suppose this is why this is on my mind to write about. I feel renewed that I have this faith and knowledge I can always rely on, it is always there for me, if I choose to embrace it. I cannot ever deny what I know to be true.
Over the last few months I started this habit (I guess it’s a habit, although maybe a goal is a better word?) to choose a Conference talk to listen to each day. There is no rhyme or reason to my choosing. I open the app, scroll to a year (today’s was 2004) and then click.
Today’s Conference talk is Believe by Sister Dalton.
This is all coming full circle for me and I am grateful to see the connection.
It was just what I needed to hear today and I would like to share it with you.
Do you have any daily habits or goals you work on achieving?
I recently realized I like to shop/surf the web when I am bored. Or hungry. Or lonely. Or tired. I have found myself often looking at websites I have no business being on (Amazon, Target, QVC, etc.)
Now that I have had this lightbulb moment I want to do some behavior modifications (love how I know these big words yet have no idea how to start this into my life, HAHA)…
Seems like most everyone I know is a YouTuber, or has a “Channel”. Of course, I know of You Tube and have gone down that black hole many a times. But, my purpose now is to find Channels to watch that I have some sort of connection to: Disney, Health, Rare Disease, brain tumor, etc. I love to listen to podcasts (click here to see my absolute favorite EVER!) but this is a way I can branch out, with a purpose.
When I find some more I like I’ll let you guys know. Are there any podcasts or YouTube Channels you like?
…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.
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.
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!)
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….
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: