On a dime

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?

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13 thoughts on “On a dime

  1. I understand what you mean living with these conditions has a knock on effect not only to you having it but it comes with affecting all aspects of your life example stress anxiety money family so on , theres a lot morr to just having pten/ cs i really hope things work out for you become better. X

  2. I am so sorry you are struggling. I wish that I could offer help in some way. Why is there such a stigma towards people who are truly sick and are trying to receive assistance? Why does there have to be a huge gap in time before disability is awarded? My attorney told me that I would be denied because I wasn’t disabled and out of work “long enough” before filing.

    • I appreciate your comment and you reaching out to me. I don’t understand the disability process either. My doctors seem to be pretty supportive and shocked as to why I was denied both times. TWO brain tumors?! I mean, really. Are you in the process of applying also? May I ask how it has been for you?

      • Yes, actually, I’m in the process too. All of my doctors have noted in my summaries that I am clearly disabled. I was recently referred to the Mayo, the place that has been consistently rated #1 in the U.S. for neurology/neurosurgery and happens to be just one hour from where I live, but they rejected my case for the fifth time last week and said they “couldn’t determine the disease and also couldn’t offer a treatment.” I talked to my attorney this morning and he told me it would be impossible to receive disability at the hearing I will inevitably have in 12-15 months without a diagnosis. I’m now in the process of approaching other research hospitals in other states to see if they will review my case, but I’m limited in my options because I’m on medical assistance and have to stay in-state to be able to use it. Everyone loves to put in their two cents about how they know “someone” who is abusing the system and easily getting disability, but I’m just not seeing it.

      • I hope that you have an attorney who specializes in Workman’s Comp cases!!! You need someone very very good to help you wade through this awful WC process. It really distresses me to hear how tough this has been for you to be undiagnosed!

      • Thank you! This is not actually worker’s comp, but rather my crappy genes. 🙂 I have a backup plan for an attorney if this one drops the ball – I’ve only interacted with him for a total of twenty minutes so far, so it’s difficult to really tell how much effort he’s willing to put forth.

  3. Jeez, when I suggested that you take a yoga or cooking class, I hadn’t read this post about your financial situation. I have found some fun free things online in my hometown through “MEETUP,” an online site that offers ways people with common interests can get together. I have attended a book club for over a year on MEET UP. I have tried a free cooking class at Bristol Farms. I also often go to Garden Walks which are free, and being outdoors on a long walk makes me feel better. Have you ever seen the site online called “GO-FUND-ME” ? Maybe a friend could help you set up an account to help you with your expenses that are adding stress to your life. Some people online are incredibly generous when they understand what you are going through. I’m wishing you the best, Heather, so that you have hope again. Sending hugs.

    • Thank you very much for your kind comments. I actually do have a GoFundMe site (it’s on the “DONATE” page). 🙂 I’ve always wanted to be in a “Book Club” but all the ones I researched near me were full and not taking any new members. 😦

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