I am by no means a writer. I use this blog to document my life since diagnosis, so I guess it’s more a journal, of sorts. Not that there’s anything wrong with that! But, I have always wished I could write well/better. I like to do these Daily Prompts when I can to gain some practice. Hopefully it’s improving my writing.
As a child, I was definitely an avid reader. I remember being holed up in my room all weekend reading either these or these. I probably didn’t see the sun on most weekends when I was a teenager. One of my best memories is going to the mall each month to get the next in this series!
Then life happens and I kind of get out of the habit of reading. Weird. Books are in my veins. I have worked at 2 different bookstores, too!
But lately? Something has changed. Since diagnosis of brain tumors and surgeries, reading has been much more difficult for me. Not enjoyable. Almost painful and completely irritating. When I have to re-read the same paragraph many times, I just get so angry. At myself, at my life’s situation, everything.
Thankfully I changed that mindset a few months ago. I have picked up reading again with a vengeance almost. I know how beneficial reading is, and I view it as physical therapy for my brain.
For the sake of my brain for now and the future, I am once again an avid reader. I just finished this book and am now reading this one.
Do you like to read? What would you recommend?
Well, folks. I made it through the hearing.
I have refocused my thoughts since then to positive ones, but believe me, it’s very hard.
When I walked out of the hearing room I broke down. From the pent-up emotions, things the judge said, my stress, everything. I just lost it.
But, in the time that’s passed I keep reminding myself that: I DID MY VERY BEST. There’s absolutely no point in rehashing what I “wish I would have said”. I will hear the judge’s decision in 30 days.
I am repeating to myself a mantra: “I am health. I am wealth. I am love” – which translates to: I don’t want breast cancer. I want to be financially stable. I want significant love in my life.
Thank you everyone for your prayers and good thoughts. I am envisioning success!
Why does the word “everyone” look weird to me? Like I spelled it wrong?
Anyway. I just wanted to check in with you. I know I’ve been a bit sporadic with posting. Some days, my life is pretty basic and boring: I go to the gym and read (true story). Other days I am overwrought with medical appointments, scans, almost daily migraines, problems with my esophagus, etc. and I feel like a weirdo (also, true story). I try to stay busy and distract myself with things that are beneficial for my mental health: I love listening to podcasts (do you recommend any? I just finished this one and HOLY COW! I could write more on that soon); volunteering; reading (obvi); editing photos on Hipstamatic.
Of course, I didn’t ask for this life of brain tumors and hereditary cancer syndromes. Nevertheless, it’s mine. My point of writing is that this week I finally have my disability hearing before a judge. To say I’m terrified would be an understatement, you know? I have this weird feeling in my chest: Anxiety, obvi. But, I can still vividly see and feel and hear my diagnosis of July 18, 2011 as if it were yesterday. Literally. And, it’s like my entire life since that day is rolled up into a big ball and this week it’ll come to a head. Like, what is the purpose of my life since then? It’s been 6 1/2 years (just 3 1/2 years for the disability process alone) and have I been wrong all along? What will this judge think? Is there enough “medical evidence” to prove to the judge that I am different now and can no longer work?
I pray that there is.
I’ll be in touch soon. If you have any extra prayers, please send them my way, and to the judge too. ❤ Thank you.
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?