…but right at diagnosis (after the brain surgeries) I had 2 huge fears. Fears that kept me up night: that I would have to have the shunt and have to file bankruptcy.
Thankfully, I have avoided the shunt so far.
I met with an attorney today to discuss my bankruptcy options.
I feel: sad, depressed, scared, alone, anxious, and a ton of other emotions that I haven’t yet identified.
No one can tell me what to do.
But, what do I do?
…to say, “I’m tired. It’s hard. I am scared. I am alone. I am struggling” because, let’s face it. That’s pretty much the entire theme of this blog and I have pretty much got that covered. If it can be said, I probably have already.
But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.
Here’s some things going on here as of late:
- Our refrigerator broke. We have been living out of a cooler for dayzzzzzzzzzz.
- I’m dealing with daily migraine headaches
- I was rear-ended last week while I was in my car, parked. Thankfully there wasn’t any damage to my car and I am feeling better now
- The unstable man at the doctor last week is still on my mind. That incident changed me.
- My passenger side car door was dinged by an older man. When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot. Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand. When I started to take his picture he quickly de-escalated.
- I haven’t done my taxes yet
- My car needs some desperate work to it
- I had my mammogram yesterday. Those days are always heavy on my heart. 85% lifetime risk of breast cancer never gets any less scary.
- Out of the 2 pairs of jeans I own, one of them is coming unraveled. It’s quite funny. No, not funny – sad.
I can go on. But, I won’t. That’s enough for me. For today and hopefully tomorrow.
Check out this link to see some new items in my storefront.
I am very thankful for your support.
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.
I’m experiencing a lot more esophageal issues as of late. Pain. Pain. Pain. Getting worse and more frequent.
Thanks to Cowden Syndrome I have an innumerable amount of polyps in my esophagus and part of my stomach.
Surgery has been discussed. (Not really a fan of removing my esophagus.)
Medication has been discussed also, but one of my goals in this life is to decrease the amount of meds I take on a daily basis. And you know what? It wouldn’t help the pain. OR STOP THE POLYPS.
I understand suffering is part of life.
But where is the joy part? Rather. Where is the joy part for me?
Am I ever eligible to feel that?
Honestly, it doesn’t quite seem that way.