Despair 


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.

 

Because I Have to Live

I have to work, because I need money to live.

I can’t work, because the headaches and pain and dizziness and memory problems and on…

But I have to work to live.

Living with brain tumors and a rare diseases costs money.

But I don’t have any.

Because I can’t work.  But I have to work.

Because I have to live.

WHEN WILL THIS CHANGE?

 

Just call me Debbie Downer

I haven’t written in a while, because I just don’t know what to say.  I try to be positive most days.  I try to keep a smile on my face and take one day at a time, because let’s face it, that’s all any of us have anyway, right?  But, I have been quiet lately because I don’t want you to think I am a complainer.  Surprisingly (to me), I have held back.  Usually, this blog is my safe place to let it all out.  To scream if I need to, to cry as well.  Suffice to say, there has been a lot of screaming and crying lately.  Things are getting much worse financially for me and I don’t see an end in sight.  I’m not trying to sound dramatic I am just being real.  I am not able to maintain full-time employment (for many reasons), I don’t have enough income coming in to cover my basic necessities, let alone a new pair of pants and/or shoes that I desperately need.  (Last week I broke a tooth and found out I need an extraction and implant.  It will cost $3,000 to fix.)

A few months ago I qualified for state help, but made “too much” last month (I am thankful that I am able to sub some days!) and now I qualify for $17/month in assistance.  I never realized how money is connected to everything and if you don’t have enough of it it can ruin your life.  My mental state of mind has never been more fragile than it is now.  I have eaten terribly lately because of the stress of not having enough money for my living expenses.  Getting diagnosed with Cowden Syndrome and Lhermitte-duclos Disease has ruined my life.  Plain and simple.  I don’t see how my future will ever be any different from what it is today.

 

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?

Because I don’t get it

  • I am in a dire financial situation.  That’s nothing new.  Haven’t worked steadily since diagnosis, brain is getting wonky, balance getting worse, etc.  (I know you can connect the dots from here.)
  • I try to work as often as I can, and that says a lot.  Because between medical appointments it’s rare that I can find a day off and a substitute teaching job on the same day that I will do. (In another post I will write about the woes of subbing for high schoolers and how I must be discerning on the jobs I accept.)  It’s not a day in the park subbing for high schoolers, but I really do love it.  Most days.  🙂
  • Found out that it “may” look bad to the disability judge that I’m working a small amount.  Um, I’m desperate for money.  One needs money to survive.  Thankfully, I can still kinda work, so why would subbing a few days a month be a big deal?
  • Does this mean I should stop working the next 8 months because I don’t want the judge to think, “She subs 1 day a week, why can’t she sub 5?”  I’m only pushing through the bad brain days because I have to!  Why is this so difficult?  I don’t think that working a small amount should be held against me.  Because, who knows how long I’ll be able to sub, anyways?

Blogging refresher

I have been a slacker lately.  That’s not for lack of needing to write, or for lack of blog topics, for sure.  I don’t actually know why I have struggled getting to my computer.  I do know that I am feeling very overwhelmed lately, more than I remember in quite a while.  Had a brain scan last month, an EKG, and just last week a GI and endocrinology appointment.

Here’s what I need to write about today:

At the appointments last week I was told that I have a vermis (about the brain scan).  My first thought is, “What the hell is a vermis?”  This appointment wasn’t with my neurologist so this doctor was very clear to me that I needed to speak with the neuro.  (Obvi).  Anyway, I did a bit of research on what a vermis is, but couldn’t make sense of it so let it go.  I thought, “Maybe that’s why I am having vertigo and balance problems?  Is vermis scar tissue?  If so, that’d make sense, I think.”  It was just a mess, as always, in my head (no pun intended.  HA)

To be honest, this brain stuff usually trumps EVERY OTHER MEDICAL ISSUE of the day, but I was able to put it aside to focus on other things, and in another post I will write about the Global Genes Rare Patient Advocacy Summit that I attended.

But today I spoke with Dr. D (neurologist) and he said everything “looked fine” and blah blah blah “follow up”, etc.  I do see him and the neurosurgeon in a few months, and we chatted a bit about my balance and gait problems.  Now, these are problems TO ME.  I don’t know if anyone else gives a rip about them, but to ME IT IS A PROBLEM.  And the kicker?  There may not be a DANG THING that anyone can do to help me with it.  It may just be LIFE.  Again.  More life.  More change.  More adjustment.  More coping of NEW stuff that I CANNOT CONTROL OR CHANGE.  All these things happening to me that I can’t help or fix!  And, when I asked him about the vermis he explained that it’s normal anatomy of the cerebellum. It appears that the 2nd brain tumor is on/in/at/located there.

Oh crap.

I forget sometimes that I have another brain tumor, besides the (partial) one that’s still remaining.

2 brain tumors and I can’t get approved for Disability.

I can’t find a job.

I can’t do what I once did.

I have no money.

Now, before you interject here, I know I need to turn this around (I caught it right away, as soon as I started typing “I can’t” and I must write a post with the things I “can do”.)

But not today.  Not now.  Not tomorrow.  Just a word:

 

 

Life is in session

This is a free-write.

Today was supposed to be “ultrasound day” at the hospital.  But, no one bothered to tell me that I needed to be fasting for the abdominal ultrasound.  Scratch that then.  So, I only had my thyroid ultrasound as scheduled.  Thankfully.  This technician was a new one; normally the hospital staff knows me by first name, or at least by “Cowden’s Syndrome”.  I didn’t care for her all that much.  I’m just going to say it here:  IF YOU DO NOT OWN THE EMPATHY GENE IN YOUR BODY THEN GET THE FREAK OUT OF THE HOSPITALSTAT!

She kept saying to me, “I need you to move your head back. Can you move it back more?”

(Well, lady.  I had brain surgery 2 times and part of my skull is missing.  I don’t have the range of motion like I once did.  So, the short answer is NO.)

But, I was willing.  And I tried.  At first she wadded rolled up some hospital gowns and wanted to put that under my shoulders to have my neck be at a specific angle.  I almost spit out my water because I thought she wanted that to go under my headNo freaking way crazy lady!  I am not putting anything like that under my head.  (I’m just thankful I can put my pillow under my head, and even that took a long time coming.)

In the past, thyroid ultrasounds I have experienced have been a bit more involved.  Meaning, the technician is mowing (my word) the wand all over my neck and clicking away on the keypad.  Today was different.  She was almost babying my neck.  Now, in her defense, I had told her about the brain surgeries, but that shouldn’t have made any difference in how she did the thyroid ultrasound.  (Note:  I must continue to have thyroid ultrasounds not so much of the thyroid cancer risk, but to watch the small amount of thyroid tissue that is still remaining in my neck. Since Cowden’s Syndrome is tumor/cell overgrowth – it just needs to be watched.)

I left the hospital and came home to some work “issues”.  I get that we all have work issues.  Life is in session.

No getting around that.  But, as hard as it is for me to admit it – I need some help of the pharmaceutical kind.  I didn’t want to get back on medication.  But, I think I need to.  I am having such difficulty dealing with life on life’s terms.  Because, I don’t like life’s terms right now.  Period.  I miss having money. I miss having independence.  I miss having a life FREE from all this crap.  I don’t have the tools to manage this.  I just don’t.  I admit that.  I feel like a failure.  That I couldn’t do it by myself.  But, I really can’t.  And it all boils down to money.  Money that I don’t have.

Part of the reason I post the “Photo of the Day” and “Fun Fact Friday” is to make sure I have some positive things to focus on here.    Because out there?  I have enough negative to deal with.  Don’t we all though? What makes me any different?  I’m not really.  Of course.  But, I want to be!  I want to have a rich and full-filled life but without money (read:  job) how is that even possible?

So, I come to my blog.  I get on the whiny pot for a while.  And, it feels good to write about it and to own it all.  Own all my fears.  My failures.  My hopes.  My dreams. My frustrations. My anger.  My sadness.  My terror.  All of it.  I own it here because it’s a safe place for me to do that.  But, no sooner than I finish a blog post about what’s affecting me presently, then I need to leave it all here and go about the rest of my day.

The perfect job doesn’t exist.  The perfect health/body doesn’t exist.  The perfect life doesn’t exist.  I get all that.  I don’t like it; but I get it.  What I get to do today is try to come to terms with what’s in front of me.

And, I will.  It make take longer than I expected.  But, I will.

 

 

Hi Rock? Meet my hard place

EDITHere’s some interesting reading about this whole fiasco!

EDIT 2:  Check out this AWESOME website I found.  It’s incredible!

*

I have been in hard places before.

Rock Me Baby

Rock Me Baby (Photo credit: Bruce McKay Yellow Snow Photography)

But now I am trapped between a very large rock and a very small space.

I don’t have insurance. I haven’t had insurance for probably 5+ years, but had managed nonetheless.

Even with the brain tumor and rare disease diagnosis in 2011, I was still keeping my head above water.

I qualify, and am on, this local program that is like health insurance. But it’s not health insurance.

This program has various levels (or tiers) based on my income, which silly me, I chose to use my Unemployment benefits as my source of income at time of renewal. I was receiving benefits this summer but since September have no longer received. Nothing. Not a dime. Not one penny of UI. What month does your calendar show we are in?

I don’t know why this is happening. If it’s because of a system upgrade; the government shutdown; or a myriad of other reasons why I haven’t received payment. I have not received an exhaust letter, so that’s not the issue. I just had my claim renewed actually.

Do you remember the procedure I have made mention of in earlier posts? The one I’m going to be having around the end of the year? The one that removes my risk of uterine cancer? I found out today I need a $400 deposit before it can get approved.

I Want Your Money

[Before this brain tumor, rather, before I knew about this brain tumor, I had a life. I was gainfully employed. I gleaned much excitement and happiness from life. I felt whole. I could take part in my daily life without concentration issues (getting worse), exhaustion issues (also getting worse), and more things I don’t have time to write about now.]

I have called the health coverage program and explained to them my current situation. I have no income coming in. Yes I am subbing but that first check doesn’t come in until the end of the month. There’s nothing “they” can do to release or adjust me from this current level of the program I am on. The one that gets me to a $400 co-pay. That is, unless they receive an exhaust letter from EDD. {Note: I had heard at the hospital last week that Disability payments weren’t being paid because of the government shutdown. I can only assume that the same thing would hold true for Unemployment Insurance.} I am trapped. Never mind I have emailed EDD twice in the last 2 weeks (getting through on the telephone is a joke. Doesn’t happen. EVER.) trying to find out what is going on with my claim. I have asked many times, “What if EDD doesn’t send me anything? What do I do then?” Their response, “Sorry ma’am. We can’t do anything to change your level without the exhaust letter from EDD.”

Trapped (1949 film)

What am I supposed to do? I am now seeing the specialists more and more (which have a higher co-pay each visit) that I am required to pay. And yet since I have no money coming in, how am I expected to pay said co-pays? It doesn’t make any sense and yet I can’t be the only one going through this?!

So, as humbling as this is…I am putting it out there. I added a “Make a Donation” button on the right side of my blog. But, also know this. I know you have to put goodness out there in order to. Well, let me just say: I believe you need to put goodness out there. And, there are some things I’m going to be doing differently so that I can continue to put goodness out there. Without any hopes or expectations of anything in return.

Thank you for reading and being here with me during this.