A few days ago an acquaintance of mine asked me, “Now, can you really not work or do you just not want to?”
You know, when someone starts off like that with me, it’s really a lose-lose conversation.
As I said, she’s just an acquaintance. She doesn’t know the daily ins and outs I deal with. In fact, no one really does (she doesn’t know me well enough to ask, but had she asked, I would have told her.) She droned on about, “People who get disability get worse” and blah blah blahhhhhh. To be honest, I had already tuned her out.
But, do you see where I am going with this?
Think about this for a moment:
- I don’t enjoy being destitute
- Do you think I love worrying about bankruptcy every moment of my day?
- Do you think it’s fun not having money to buy my basic needs (clothing, toiletries, etc.)?
- Do you really think I am home eating bon-bons watching daytime TV?
- Just because I can walk doesn’t mean I am not dizzy, in pain, managing a migraine, trying to concentrate and focus on what you’re saying to me, etc.
- My life isn’t fun. It’s damn hard
I can’t do what I once did. I am applying for jobs. I am looking. But, maintaining a full-time job (as I did before diagnosis and surgeries) isn’t possible. And, evidently, even finding part-time employment isn’t happening for me. Also, I can’t trust or disclose in an interview, “Oh BTW, I have 2 brain tumors and damage now and get dizzy often and need frequent breaks to sit or stand and have to drink a zillion ounces of water now because since surgery I am more dehydrated than ever and sometimes I get migraines too..and…and…and…”
What the hell am I to do?
So, this post is just to get all this crap out of my head so that hopefully I can sleep tonight.
Welp. I don’t sleep any other night, so why would tonight be any different?
LET ME BREAK THIS DOWN:
- I have 2 rare brain tumors
- I have a hereditary cancer syndrome called Cowden Syndrome
- I had 2 brain surgeries and am currently experiencing issues/effects from having my brain scrambled a few times
- Blah blah blah – I see a zillion doctors
- I apply for disability 3 1/2 years ago
- I GET DENIED for disability
- I can’t work, I can’t understand and process things as quickly as I used to, etc. etc. etc.
- Just a few weeks ago I found out about a job that’s in my field, PART-TIME, matches my degree area, pays INCREDIBLY, literally perfect on paper so I scrambled (ha!) and applied. I am very qualified for the job
- FOUND OUT TONIGHT THAT I didn’t even get called for a damn interview for the position
- ALSO, DO YOU KNOW THAT I CANNOT EVEN GET AN INTERVIEW FOR TARGET?!
- What does God want from me?
- One needs money in order to survive in this world!
- Filing bankruptcy has been one of my worst fears since diagnosis and I have been able to avoid it. Until now
- I can’t work. But, then when I find something that would be a STRUGGLE but do-able, I don’t even get a call to interview for it
- I am a good person! I have a degree!
- What the hell is wrong with me and what I am I supposed to do now? Sell my body on a street corner to make ends meet?
I created this teespring store to raise money for my living expenses plus to raise awareness for Cowden Syndrome and Lhermitte-duclos Disease.
Take a look at the new shirt I created just now!
PS…if you know anyone that creates artwork or is willing to donate their time to help me create more shirts, please contact me! Thanks!
You may think getting diagnosed with 2 brain tumors and a hereditary cancer syndrome is bad?
Try getting denied for disability.
This is actually worse.
I try really hard to be brave.
I really try hard to be strong.
You cannot survive without money.
I am broken.
What is the point anymore?
Approval would have helped me avoid filing bankruptcy. That’s now next on my to-do list.
Every time I think about it I begin to cry.
Every thing I am feeling and thinking now is exactly what I feared would happen.
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!
I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet. I do try to focus on the positive, yes. But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day. (I’m not discounting the hardships other people face.)
But, I digress.
Trying to steer this post from being “too ranty”. hehe
Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related. Someone reached out to me and suggested I get in touch with this organization.
I got on that in a hot second.
To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way. My life is hard. I’m alone. I’m managing my life as best I can but forced to depend on my family, which is limited at best. How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.
Anyway. I contacted Mission 4 Maureen immediately. By their grace, I was granted financial help. Thank you Mission 4 Maureen! Thank you for what you do to help those of us living with brain tumors. And, I ask you dear readers: Please visit their website. If you do Facebook, please consider “LIKING” their page and support them in any way can.
I thank you sincerely.
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?
Many of you know how dire my financial status is since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease. I am humbled and blessed by the kindness of friends and strangers from the help I have received from my GoFundMe page. I also created a Teespring store to raise awareness for Rare Diseases, which in turn helps me too. Please take a look at the Teespring link and consider buying a shirt if you can. I just created a new shirt yesterday!
This holiday season I am thankful for all of you. Who pray for me, who have donated to me, for everything. I account so much of my recovery due to the prayers of people I don’t even know.
I know no one likes a Nervous Nelly. But, I can’t help it! I am so overcome with terror about my financial situation that it pulls me deeper and deeper into my depression. What do I do? Where can I get money? Where can I find a place where I can one day be financially independent? Or, at least not FULLY 100% dependent on my mother? It’s so unfair to her. I am continually wracked with guilt for all the pain and frustration I cause her. I can’t get my SH*T together. Will I ever be able to get it together?
I found out today my disability hearing is November 30. This is a great thing; however, it adds so much more anxiety onto my shoulders. Why is it so difficult to expect good things for me? Why wouldn’t the judge approve my disability based on my medical records and reports from my doctors? Right?
Yet who knows what the outcome will be? And, how do I hang on until then? I have about $200 in my checking account and 3 credit card bills due within the first 2 weeks of September. I am pathetic and a waste of space that I cannot take care of my life! And, I get so jealous when I come across these GoFundMe pages and people have raised 10s of thousands of dollars! I know I shouldn’t be jealous. I should be happy those people have been blessed. But, when will that type of good stuff happen for me? I don’t know how I will pay those bills next week. I DO NOT HAVE THE MONEY. My mom is tapped out. She’s supporting many other people, too. She can’t help me any longer. Is there some secret place or website where people can support someone like me? Or did those people just have good, supportive friends who helped them out?
I’m nervous. I’m hopeless. I don’t know what else to do. I have contacted my church. I have online sites to ask for financial support, which makes me feel even more worthless than I already do.
What do I do? Please pray for me.
Sometimes, I wonder how many people have been forced to file for bankruptcy once being diagnosed with a life-changing disease? While I know it’s not healthy to be so focused on my dire financial situation, it’s really hard not to be. It’s really difficult to not be depressed about my current state of affairs. And, I see no end in sight. My brain is now damaged. I have a brain disease. I’m desperate. I don’t know what to do.
This isn’t pleasant. This isn’t fun. This is my life and I wouldn’t wish it on anyone.