Pls help me live w/2 Rare Diseases
(I provided links so you can read about each Rare Disease).
The larger brain tumor was 5 cm. at time of diagnosis and I had a two brain surgeries 1 week apart. The first one was 13 hours long and the second surgery was to repair a CSF leak that lasted 4 hours. I had to have the surgery on the larger tumor because due to its size it was pressing on my ventricles and causing hydrocephaly. There was talk of possibly needing a shunt after the craniotomy if the ventricles didn't go back to their place, but thankfully, they did.
The 2nd brain tumor is located in the center of my cerebellum and is approximately 2 cm. That one is inoperable because if I had surgery on that one, the surgeon would have to go through healthy tissue. No one wants that, especially me!
Cowden's Syndrome (PTEN Hamartoma Syndrome) , which affects 1/200,000 people, causes me to be high-risk for many cancers, including breast (85% lifetime risk), colon, uterine, kidney, melanoma, thyroid, and others not yet documented.
I had thyroid cancer in 2003, before we knew Cowden Syndrome anything. And, in 2013 I had a prophylactic hysterectomy to manage my uterine cancer risk. I was NOT going to get uterine cancer. I made a decision then and there and decided to take control over Cowden Syndrome. There are monthly doctor appointments I must attend. There are screenings of my breasts, kidneys, colon, liver, spleen, etc. to make sure the cancer is "caught in time". And my brain still gets scanned in the midst of this, too.
In 2011, before diagnosis, I had a full-time job and was active in my life and in all areas of it. Now? I cannot do the things I once did. I cannot find a job that is flexible around my many, many, doctor appointments that affords me enough income to cover all my expenses. I now have cognitive issues as well which doesn't leave me the ability to maintain a full-time job.
I struggle to get my basic necessities, even clothes, much-needed vitamins to manage Cowden Syndrome (there is no FDA treatment for Cowden Syndrome or Lhermitte-duclos Disease), and gas, car insurance for my car.
Some days when I feel OK, I work in education but it's an on-call basis. There is not enough coming in to cover my needs and I am very grateful for any help you can provide. I know there are a lot of scams on the Internet, but I assure you I am in dire need and am doing all within my ability to pay it forward. Any monies donated to me will go towards life expenses, and to paying off my credit cards. I have been forced to live on my credit cards lately, which I KNOW is terrible, but I have no choice. I am desperate. I can even post copies of any receipts if you'd like me to.
Life is not like it once was, that is for sure, but I am trying my best to navigate things now and moving forward. I volunteer at a local school and an animal shelter. When I am feeling down, I know I can go to either of those places to turn my mood around.
There's a lot to be said for hope and miracles. I'm working on the hope...the miracle is that I'm here today with no life-altering changes after a 13-hour brain surgery.
I can be reached on Twitter at: @zheatherchamp and my blog is: hopeforheather.wordpress.com.
Thank you for reading! And thank you sincerely for any help you can share with me. I promise that I will pay it forward in every way that I can.
Thank you for reading.
EDIT 5/24/17: After a 3.5 year process I found out this week the judge denied me the disability. I had an advocate who evidently didn't do much. The judge said I am faking, and that over the years I have told numerous doctors "I am fine". He held that against me. I wonder how many times my doctors wrote, "She is depressed, borderline suicidal, can't work because of her chronic head pain and processing delays"?
EDIT 2/15/14: I just filed my taxes and found out I owe $521. I cannot afford my daily necessities, I don't know how this will even work.