At times, I wish I could sail off into the sunset. To leave all my cares and worries behind me: no more brain scans; no more breast scans; no more kidney scans; no more colonoscopies and EGD’s; no more stress of worrying about the outcomes of the tests I must endure. No more Cowden Syndrome and no more Lhermitte-duclos Disease discussion. Ever.
Alas, life is not like a movie. I don’t have that luxury around me, and to be honest, I really envy those that do.
But life is life. And, it’s not a dress rehearsal. This is my lot in life. Call it bad or good, it’s mine and I must not ever give up.
Hello friends and family: Please take a look at this link and consider buying a custom t-shirt. All monies raised will go to the PTEN Foundation: Connect. Collaborate. Cure.
…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.
I realized this week – I don’t want to have a brain scan right now. I had one in December. I don’t want another one next month.
Also, I have pondered about a lot of things lately:
- Why are the MRI’s so frequent? (About every 6 months)
- Are they this frequent to help ease my anxiety?
- Does the doctor want them this often?
- There hasn’t been “significant” growth since 2011. What does that mean?
- Does the neurosurgeon want to scan me so often because we just don’t know crap about gangliocytoma?
- Why don’t I want to have this next scan?
- Will there be (of course not) any significant change if I push the scan off 6 months?
- Should I appeal the disability denial?
- Should I refile?
- Should I file bankruptcy?
- Why can’t I catch a break?
When can I get some sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep?
Check out the new custom t-shirt I just created!
Take a look at my entire store here. What other items would you like to see? I am doing all I can to be financially independent. Please consider buying a shirt if you can.
Thanks for looking!
I’ve lost my way. And my hope.
I’m struggling but trying to find my way back.
I created this teespring store to raise money for my living expenses plus to raise awareness for Cowden Syndrome and Lhermitte-duclos Disease.
Take a look at the new shirt I created just now!
PS…if you know anyone that creates artwork or is willing to donate their time to help me create more shirts, please contact me! Thanks!
I have a virtual friend who has offered me her expertise, advice, support, on this whole disability mess. (THANK YOU!)
I chose not to read the judge’s 23 page denial because it will only make me angrier and more suicidal.
My virtual friend was kind enough to read the denial for me.
In part, the denial states that I was “fine and happy” in the courtroom. (I was trying to be professional and not lose my marbles. I almost did cause a scene at the end and I held it together because I was afraid THAT would be held against me.)
Over the years I have told my doctors that “I’m fine”. The judge held that against me in part of his reason to deny me.
(I have only told my numerous doctors “I’m fine” because I AM TIRED OF TELLING THEM ABOUT MY PAIN ALL THE TIME. MY CONSTANT HEAD PAIN, CONFUSION, MEMORY PROBLEMS, FINE MOTOR SKILLS PROBLEMS, ANXIETY, DEPRESSION, ETC.) But, that doesn’t mean over the 6 years since my life got turned upside down I never told ANY doctor I am in horrific pain? I DID!
The advocate told me if I chose to appeal then my case would go back to the same judge. My virtual friend said that in the denial it says that it may not go back to the same judge.
So kids. If you’re in the process of filing to disability, don’t EVER tell any of your doctors that you are fine. And, don’t find someone to “help” you online.
So Wikipedia tells me that catapult means: to launch a projectile a great distance without the aid of an explosive device. Hmmm.
My first thought was about all the Mythbuster episodes I’ve watched in the past and I wonder how many episodes had a catapult in it?
My next thought is: Someone put me in one of these and catapult me to the moon. I am done.
Please pray for me.
I am shocked with the judge’s decision. I am shocked that living with 2 brain tumors and a rare hereditary cancer syndrome doesn’t call for any compassion, support, understanding, anything.
The “advocate” told me yesterday that in reading the judge’s 23 page report of my denial, I told one of my doctors in January 2014 I was having hot flashes but wanted to work. (I had a hysterectomy the month earlier. I had to endure forced surgical menopause. Of course I had hot flashes! Plus, my brain was a hell of a lot different in 2014 than it is today. It was better then. Things were better then.)
So our trusted government servant made his decision (partly) on what I said over 3 years ago.
I guess I’ve learned to never tell my doctor anything.
I hate guilt. It consumes me and eats me up inside.
I have so much guilt about burdening my mom; her being forced to pay for my daily living expenses that I cannot take care of. (In addition to gas, car insurance, etc.)
Accepting my feelings of guilt, or
rationalizing coping with them, or whatever is one of my biggest crosses to date.
But at therapy yesterday Dr. C gave me some perspective I haven’t reached on my own:
She said that guilt results from when you do something wrong.
I didn’t do anything wrong to be diagnosed with 2 brain tumors and a hereditary cancer syndrome. I didn’t cause that. I didn’t make a less-than-desirable choice and am now forced to live with the consequences. I just have a “shitty” brain (her words). And she asked me, “Would you rather have a shitty mom and a good brain?”
No. No way no how no no no. No no no nope no.
I will take all the crappy things in the world because I have the best mom ever.
I got the better end of the deal then. ❤