One thing I have noticed since diagnosis is that my emotions can turn on a dime. Just a few days ago I was feeling good and had not thought of brain tumors in a while, and now this. This is real. This is raw. This is Cowden Syndrome and Lhermitte-duclos Disease tonight:
My current financial situation is very desperate. Very. Desperate. I have already held several yard sales to raise some money. I have already visited the Pawn Shop. I have used my brain (what’s left of it) to think of ways to bring me in some money. I try to not write about it too often, because “It is what it is” and all that garbage. Complaining about things isn’t going to change anything. I am in the process of applying for Disability, but have another 6 months to go before I see a judge. I have no money and it sucks. I can’t do the things I once did because I have no money. I can’t do social things with friends because I have no money. And WHY don’t I have any money?! Because Cowden Syndrome and Lhermitte-duclos Disease doesn’t let me have a job!
I am so very frustrated right now. I hustle all the time to try to make ends meet. Some of you may know I work as a Substitute Teacher, and while I have a degree in teaching I have had to scale back to subbing because of the flexible schedule. For the most part, a flexible schedule to accommodate all my medical appointments works out nice. But I desperately need new work shoes and work pants, but don’t have money to buy any. (I look like a bum most days when I get to work.) There have been several “friends” who told me to schedule my appointments during the summer, or after school. I have explained that I don’t have the freedom to schedule appointments on a whim. I am at the beck and call of the system. And, I have been judged by a several friends because of this, and accused of using my medical condition as an excuse to not work regularly. Thankfully I no longer have those negative people in my life. Case in point:
- I had a big Cowden Syndrome consultation (for my esophagus, finally) 2 hours away this morning, and couldn’t work.
- There is an opportunity to work all day tomorrow and I cannot because I have a brain scan.
Screw you Cowden Syndrome. Eff you Lhermitte-duclos Disease. What happens when you don’t work? There is NO MONEY! All you are doing is making life harder for me, (and I have a lot to deal with as it is!) and I end up getting even more in credit card debt because I have to use them to survive. You don’t understand how difficult things are for me and you have ruined my life. Are you paying my bills? You have taken the fun and excitement I once experienced and replaced it with MORE stress and anxiety. Where is the light? Where is the end of my tunnel? Where is my reprieve? When will I get a break? When will I no longer have to stress about money? When I’m dead? Thankfully my mom can help me a bit, but I feel so guilty about that. I am so wracked with guilt that I cannot get my life in order. When is it my time? When is it my turn to breathe?