As I have written many times before, this blog is my safe space, literally, to get pissed about what is going on in my life now, usually my struggles and heartaches as I work to process brain tumors and Rare Disease. I will always be honest here and to myself. I owe myself at least that much. It’s not pretty most days; thank you to those who are with me on this!
But, changing gears just a bit, I am really excited for this year’s Rare Disease Day.
Each year since my diagnosis I’ve hoped and always wanted to plan something “big”. A few years ago I was able to hold a fundraiser and the money raised was donated to Global Genes and the PTEN Foundation.
That event was so incredible and I was able to have Jaana, my awesomely talented friend take photos of the event. It was such a great time!
Unfortunately, this year I wasn’t able to plan anything.
BUT, I do have something else going on to bring awareness for Cowden Syndrome and Lhermitte-duclos Disease and I can’t wait to show it to you all!
I know we’re encouraged to have faith during our trials.
But, how do I get some?
I’m constantly nauseous because the realization is hitting me harder and deeper: I cannot afford to live.
Why would Heavenly Father bring me through 2 brain surgeries, and a host of other surgeries, for this?
I feel terribly guilty. I feel like and AM such a burden. No one understands the inner turmoil this brings me.
This is all my life is?
I’ve read different blogs for about 30 minutes this Saturday morning. Trying to understand what I am feeling, or at least distract myself from what I am feeling.
Some mornings I awake and think to myself, “I should write today. There’s so much anxiety coursing through my veins, I need to get it out. I need to cry, scream, rant, process it all here. I am actually quite nervous about my breast MRI next month. I wonder if this will be the day I get the news? Will I hear the “C” word that day?
Then I have my consult for my colonoscopy and EGD this month. My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see. So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them? OH, I CANNOT PAY THEM. That’s right.
And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy. And, I had 2 job interviews these past 2 weeks and didn’t get either job! What gives? Why can’t I catch a break? My life sucks and I cannot get my head above water. I feel like I am drowning, literally. I don’t insist on much. Really. And now, I don’t hope too much either. I’m tired of the stress. When will it end?
Whoa. As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”
Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD. I always tend to wonder, “Is today the day I get diagnosed with cancer?”
I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days. My life now will never not have any medical/doctor type things in it.
I must remember to B R E A T H E through the anxiety….
I am still bewildered, even 7 years later, that I have 2 brain tumors and a Rare Disease called Cowden Syndrome.
I think many people get these words confused: sympathize and empathize. Or maybe I’m the one who does? What do you think of when you see the word sympathy? I feel sadness. Loneliness. It has such a bad connotation for me.
I would (safely) assume that many people felt sympathy for me when I got diagnosed with the brain tumors. And Cowden Syndrome. But now that things have “passed”, I feel forgotten. I crave empathy so much. I feel guilty when I “complain” about my lot in life now, but you know what? This is my blog. This is my safe space. I am not complaining. I am processing. I am explaining. I am working on not letting my feelings eat me up inside and making me sicker than I already am. I will write everything here that I need to. Period.
Not one single person (except maybe a certain one) gives a rip about what I am enduring now. OK, OK. I get it though. We are all struggling. Everyone has something. And, these brain tumors and Rare Disease are mine alone. But, when I get overwhelmed (as I did yesterday) – to whom do I turn? Strangers on the Internet who actually seem to care about me more than my “real life” friends? No one wants to hear it. No one now even empathizes with me and the financial and emotional duress I am under every single day. As I’ve mentioned before, some days I am able to work – on-call. My brain cannot endure working 2 days in a row. There is so much sensory stimulation and information that my brain is trying to process that after 4 hours, I am done. My brain is done. My entire body is done. I came home right after work and was on the verge of a panic attack. I took a Xanax and slept for 2 hours. I am overrun with stress and anxiety, and I am afraid that the more I must “push” myself (working) – I will make my brain worse. Or make the brain tumors grow. Do you know what I mean? I just felt like yesterday I was going to break. I wanted to break. I wanted all the pain to stop. I tweeted that if this was all my life has in store for me, even if I live the next 20 years, I think I will reconsider.
I fear I will be remembered as a statistic of brain tumors instead of as a human being. That’s one of my greatest fears. That, and dying alone.
Oh my. I could fill an entire blog of pictures of things that are beloved to me. What first is brought to my mind is our beloved Prophet, Thomas S. Monson, recently passed away. I remember when President Hinckley passed away and how painful that was. This loss is the same yet different.
The 2nd thing brought to my mind, (besides my family of course) is my boy Shadow. I am going to start crying as I type this, so I will keep this short. He had a rough life before us. He lived (and somehow survived) on the streets for over 10 years. He is now waiting for me on the Rainbow Bridge as of this past December. I am minutely comforted in this loss by reminding myself that during the last year of his life he was loved, fed, protected, and a host of other things we were able to give to him.
I miss him terribly.
I don’t think I’ll ever get used to having a brain tumor. I guess, that’s understandable right? I mean there are 2 foreign
objects things types of poison in my cerebellum that wreaks havoc on my life.
SIDE NOTE: I began to read the Wikipedia link on the cerebellum. I now feel like vomiting.
I work temporarily, on-call, and when I am physically able. I worked for several hours yesterday, and what do you think today entails? Resting. Reading maybe. QUIET. I cannot tolerate the TV, music, radio, podcasts, NOTHING. It’s so annoying. And, frustrating. I just want to live a normal (what’s that, right?) life and feel like a contributing member of society. It always goes back to the financial duress I am under every moment, and that I am unable to finance my life and support even my bare living necessities.
What happens to people like me? Where do we go? Are we forgotten always?
Today was my oncology appointment. Gah.
I had a few months of “quiet” but that’s now over. The breast MRI, colonoscopy, and EGD are next up to bat.
I’ve come this far, but man I’ll tell ya…it’s so much. I’ve always battled generalized anxiety, but when things come at me fast like this, my anxiety is running full speed at 150%.
Praying for sleep tonight.
I laugh because when I first read today’s prompt I thought it said “shrill”.
Hmmm, maybe a little Freudian slip of sorts? Am I a shrill person?!
I sure hope not!
I’ll just go hang out now with my cat and listen to her trill. 🙂