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.
You may think getting diagnosed with 2 brain tumors and a hereditary cancer syndrome is bad?
Try getting denied for disability.
This is actually worse.
I try really hard to be brave.
I really try hard to be strong.
You cannot survive without money.
I am broken.
What is the point anymore?
Approval would have helped me avoid filing bankruptcy. That’s now next on my to-do list.
Every time I think about it I begin to cry.
Every thing I am feeling and thinking now is exactly what I feared would happen.
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. ❤
I will not write my feelings about the “news” and President Trump. I will not write my feelings about what I fear of the future of our country. But one thing I’ve learned lately is: feelings aren’t facts. I wish the fake news networks knew this!
That phrase helps me immensely, especially when it comes to my medical status. I have a growth (tumor?) on my tongue and have a visit with the ENT this week. These growths aren’t new; that’s the whole Cowden Syndrome thing in a nutshell. Without going into too much gritty detail I have seen an ENT before about these things, and he told me I would have to go to the O.R. to have them removed. I am scared. I am terrified, to be very honest. I don’t want any more visits to the O.R. I have to center my attention and energy on what I do know. And in fact, I don’t know anything today. Maybe he can snip it right off?
This new growth is large, again new, and here’s what I find most peculiar about this entire thing: when I was 2 years old I had surgery to remove a “growth” on my gigantic tonsils. My mom just told me the thing on my tongue now looks almost identical to what was on my tonsil over 40 years ago.
Of course not.
Am I the only one who saw “hospital” first? No? OK, then.
I laugh that I draw that conclusion. But, you can’t blame me. Out of all my hospital stays, many of them weren’t very hospitable. I felt no hospitality whatsoever. 🙂
I could write stories of my experiences, and in fact I have many times.
One of my (many) wishes would be to talk to every JERKY nurse, doctor, technician I have come across since diagnosis and
give them a piece of my mind, tell them off, sincerely ask them why they are in the medical field. If you don’t have one ounce of compassion in your soul, DO A DIFFERENT JOB!
What do I pursue now that my life is such that it is?
Initially my plan was a career in education. But, the brain tumors (and surgeries) have put a kink in that plan.
I know there’s more to my life than stress, financial ruin, depression, despair.
Where do I find the “more”?
When I look at the most recent picture/update (on my GoFundMe site), my eyes are drawn towards my head. (To me) I only see my head. I only see it bandaged. I only see me, laying in the bed alone, because I was the only one who was walking through this experience. I remember my mom wanting to take a picture of me and I flat-out refused. A picture of this? Of this moment? Why? Who wants to see this? Who would want to even remotely remember this moment in time? She took this picture the night before the first brain surgery. But she didn’t give up. In hindsight, I’m glad I allowed her to take it, but I just couldn’t look at the camera. I didn’t want anyone to see me like this. I think the picture made it too real. The camera made it too real. Up until that next morning, I was still living in denial that I wasn’t going to have to have my skull cut open.
I have more pictures of after surgery. The incision, its healing. I looked at a few of those pictures a few nights ago and oddly enough, I felt a small out-of-body experience looking at those pictures. I didn’t really identify, or know how to identify, with that person. The person who had their skull opened twice. The person who, almost 3 years later, is still dealing with the effects of a brain tumor and rare disease diagnosis. In my defense, I know I’m better than I was. And, with that being said, that gives me hope that in more time I’m going to be even better in the future than I am today.
Edit 5/8/17: I was going through my Drafts folder and found this post. So funny how this post brings up so much anxiety even from 3 years ago. I am so thankful I have this blog to document my life.
First off: hahahaahahahaaaaaaaaaaaaaaaaa. I love this prompt!
Second: Happy Monday!
Third: I am reading this book and CANNOT put it down! I was up until 1 am this morning (gah!) convincing myself, “One more chapter. One more chapter!” Without giving away too much of a spoiler, I was going to be VERY BITTER if Orson got hurt!
So, onto the daily prompt: Let’s expound on this for a moment…
- I have 2 brain tumors
- I had to have a hysterectomy to manage my uterine cancer risk
- I live at home
- I am not able to work
- I am overweight
- I had thyroid cancer
- My esophagus is lined with an innumerable amount of polyps that (may) or may not turn malignant one day.
- I could find many more but let’s stop there.
I am not writing those things for pity. I am writing them out as they are my reality since July 18, 2011. Couldn’t I be bitter? Shouldn’t I be bitter? And to be honest, I think in the beginning of this new life of mine I was in fact very bitter. I had big dreams! I was going to have a career and a family and be a wife and a mother and and and and….but in fact, my life didn’t turn out that way.
Today I have my bitter days, but now they are more bitter hours. (Progress!)
Some days I wake up pretty bitter that I can’t go out with friends, I can’t work, I can’t be a mother, I am not an independent woman, blah blah blah. But, I can better name these moments now, and I while I may entertain the thoughts for a short while (because my feelings are my feelings and I want to honor them) then I move on and distract myself doing something else. Whether that’s exercising, walking, volunteering, cleaning around the house, helping my family, writing on my blog, taking photographs (which is my new LOVE!) etc.
I think it’s very natural and normal to be bitter about things in our life. What’s important is how we deal with that emotion. Please don’t let it eat you up inside. We are in this together. ❤