I criticize every single person when they do it wrong.
When I write “wrong”, I mean violate my privacy.
Maybe I should worry about your privacy too; however, I wish you would worry about your privacy. When I am standing behind you in line at the doctor and hear your address, telephone number, birthday, your mother’s maiden name, your temperature, etc. being shouted by you or the office staff, do you realize I could be recording you! Who knows what or where that information could end up? Of course, I’m not recording you. But, there are bad people everywhere.
I have complained many times and to several different people (managers, administrators, etc.) at the hospitals and doctor offices. Nothing has changed. What has changed is me. I know enough to not shout my home address and birthdate for all in the waiting room to hear. I now write down my address or birthday and give it to them through the window. That works for me. That is how I handle my privacy now, because no one else gives a rip. Trust me.
I now criticize a little less than before. And I mean a very little.
I think I have posted some crowd funding links here in the past. But, there have been a few changes to the links so I wanted to do a new post.
I created a storefront on Teespring a while ago. I created custom t-shirts that have a two-fold purpose. They can be conversation starters: “What does ‘Ganglio What’ mean? What does CHAMP signify?”
Maybe you don’t know the answers to those questions technically, but since you read my blog (hopefully continue to do so, hehe) you could say, “Oh. A friend of mine has a brain tumor called Gangliocytoma.” OR, “I follow a girl on Twitter who’s username is @ZHeatherChamp and I think she’s a champ too!” (insert smiley face here.)
If you bought one of those shirts you are helping bring awareness to my blog. Which in turn brings a conversation about Rare Diseases. Or brain tumors. Or hereditary cancer syndromes. Any of that! Or all of that! Win, win right? (Reason #1)
Reason #2, which is kind of a big deal, too. I receive part of the purchase price to help me navigate my medical bills. I won’t rehash the trauma. It’s real and it’s bad. 😦
Thank you thank you thank you! I’m forever grateful.
I have tried to do these things in the past, but since I’m not a writer I don’t do them all that often. I wish I was a writer, and could write eloquently and express the things in my heart. I usually just mush everything and end up writing the way I speak. #fail
Anyway, I saw the prompt for today and it resonated with me. Time to pick it up and be the Blogger I only dream about! 🙂
For years after diagnosis, I resisted everything. I don’t have brain tumors. I don’t have a rare hereditary cancer syndrome. I don’t have to go to the doctor all the time. I’m not high-risk for breast cancer. These brain tumors will not grow. Resist. Resist. Resist.
Only today, almost 6 years after diagnosis, am I starting to get a glimpse of acceptance. Resistance is futile. Especially when you have a sketchy medical status. I can no longer resist what is.
I have 2 brain tumors. I have Cowden Syndrome. Resisting the reality of that is a recipe for disaster. My life has been a disaster and continues so.
Today, I tell you I will try harder. I will do better. I will stop resisting.
Once you get diagnosed with a chronic medical condition – you see who your true friends really are.
(Or aren’t, as the case may be.)
EDIT: This post in no way reflects my feelings towards those special few people who have donated to my GoFundMe account these last few days. I am very grateful to you all. Thank you. ❤
I have a tweet pinned on my Twitter profile that’s been weighing on me lately:
“Brain Tumors don’t define me”
But, you know what? They DO define me. As much as I struggle against them, they do. Just about every waking moment I’m reminded how they have defined my life. Can you guess how? Not by the numerous doctor appointments. Not by the many scans and procedures I now endure. They define me because of my dire financial situation.
If I was able to
keep maintain a job of some sort and had some income coming in, it’d be easy to be defined by something else. I am a friend. A daughter. A sister. An Aunt who just happens to have 2 brain tumors and a rare, genetic condition.
How do I find meaning in my life now when I can’t take care of my needs? I am racked with guilt every moment of the day that these brain tumors forced me to beg for help. (I guess I should look at it a different way instead? That these brain tumors forced me to be humble? I guess I wasn’t humble enough before?)
Why did major brain surgeries have to force me into submission? Today, I can’t pay for gas for my car or much needed clothes (my socks have holes in them) or even $900 to fix a crown that broke a few days ago.
Can anyone understand how my life is ruined now? Credit cards are maxed out. My retired-mother is forced to pay for my daily living expenses. How can I see or hope for change? Can anyone understand how these brain tumors DO define me, yet I want so much the opposite to be true? I want to enjoy life. Is that too much to ask?
So, I’ll ask you instead. How do YOU define yourself?
I have had a rough few days. Not sure why; not sure what triggers them. I have to accept the bad days, along with the good.
So, I had my brain scan a few Fridays ago. Saw the neurosurgeon the following Friday. Stable. Stable. Stable. In fact, the radiologist said “Grossly stable.” GREAT NEWS! If there hasn’t been any growth in 5 years, I hope that the next 5 years will be the same, you know?
Although I struggle with
wanting needing to know everything about the brain tumors. Has there been minimal growth? MRI’s aren’t 100% accurate. So, how much are we off? When will I be told there IS growth? When will the “MRI’s not 100% accurate” show growth? Does that make sense?
I know I must accept the stable. And, don’t get me wrong – I do. But these dang brain tumors keep me up at night. Sometimes I can’t believe I have 2 brain tumors in my cerebellum. Why me? What did I do to cause this? Why do I have 2 tumors? Blah, blah, blah. Same story, different day.
So, I got up this morning and went to the gym. I try to combat the bad days with something good. Something different. Something outside my comfort zone. Putting stability into my life where I can.
Yesterday morning I had another scan. I wish I knew how many I’ve had since diagnosis. (I bet it’s 10X more than I think.) You know, I
think hope wish that every time I go it’ll get easier. It doesn’t.
I have to ask the MRI technician every time the following questions:
- What if there’s a power outage while my scan is happening?
- What if something happens to you while it’s happening?
- What if there’s an earthquake while I’m in there?
- What if there’s a natural disaster? Or an emergency at the hospital while I’m in there?
The technician is pretty funny; he knows me by name and me him. He always talks me off a ledge, which I appreciate. Plus, I’m usually medicated so that helps 150%, too.
I practiced my visualization: I am at Disneyland. I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park. (It’s a neat little tip that works for me!)
Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”
We shall see.
Tomorrow morning I may or may not go before the Judge in my Disability hearing.
Will you please say a short prayer, or send up good MOJO to the stars for me?
I’m so nervous, but have prayed for my peace of mind and heart for weeks.
Thank you very much.
EDIT: Aaaack. I set this to be published 2 days ago in case I wasn’t near my computer today. Found out the hearing has been postponed. Thank you for the prayers. I still welcome them and am very grateful.