Through the other side

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.

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Thank you everyone for your prayers and good thoughts.  I am envisioning success!

 



 

With humble thanks

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.

 

What defines you?

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?

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So, I’ll ask you instead.  How do YOU define yourself?

 

With Thanks 2016

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.

Love, Heather

Nervous Nelly

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.

Life in 2016.

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.

Real Talk

I struggle to stay present.  To be in the moment and really fully experience each moment of my day.  To not worry (so much) of my financial struggles and really enjoy my life.

This weekend I went on a quick day trip with a friend from church.  It was so much fun!  Right until I got dizzy.  About 1/2 way into our drive the bottom dropped out and everything for me came unhinged.  I was nauseous, the car was spinning, just crap.  Crap crap crap crap crap crap crap.

My day started out wonderfully, then this happened.

Real talk time. 

Heather:  This will continue to happen.  More dizzy episodes.  More balance problems.  It’s expected after having your cerebellum dug into TWICE.  Relish the good days, and be good to yourself on the bad.  Be strong when other people doubt you.  You will continue to meet the haters.

Leave them in your dust.

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.

 

Today’s choice

At this moment, I have 1 of 2 choices. I can continue to fret and stress about my dire financial situation and make myself even sicker about it, or I can redirect my attention to something (mildly) positive.  I shall choose the latter.  Now, interestingly enough, this 2nd thing shouldn’t be THAT big of a deal, but beeeeee-lieve me.  It IS.

Usually, most of my time is spent micro-managing every medical clinic I attend, making sure things are getting done (procedures scheduled correctly, prescriptions getting called in to the correct pharmacy, etc.)  And, most often, when things fall apart (read: the staff drops the ball) they instruct me to do the calling.  I have to call the pharmacy, or the other clinic, or whatever.  Instead of THEM doing their job, they put the responsibility onto MY shoulders.  (I guess in part, that’s fine, because I know it’s getting done.  However, I don’t have a job.  I don’t have any money.  I’m in real trouble.  If I am expected to do THEIR FREAKING JOB then I expect to get paid for it.)

Last week I saw a new psychiatrist for my mental health services, and thankfully, I really like her.  We decided to increase (slowly) one of my current medications.  When I went a few days later to the pharmacy to pick it up, they told me the insurance denied approving it.  (Whaaaaa?)  Pharmacy told me they faxed Psych a form that needed to get filled out and sent to Insurance.  I called Psych and left message to follow-up.  Called Psych again yesterday and they said they didn’t receive it.  Called Pharmacy back AGAIN and they said they would RE-SEND it.  Played a bit more phone tag with Psych (which isn’t fun, BTW) and guess what?

Psych called this morning.  There is STILL NO FREAKING FAX from Pharmacy.

UGHHHHHHHHHHHHH.  I just cannot.

Is this what my life has become?  Calling all these medical offices making sure they do their DANG JOB?!  My life is revolving around this effing piece of paper?!

But here’s the kicker:  When I told Psych, “Hang on.  Let me get a pen to write your fax number for when I call Pharmacy.” she replied, “Oh.  I am going to call Pharmacy.  I just needed to make sure I knew which one you used.”

WHAT THE WHUT?!

Granted.  This all may blow up tomorrow, but I sure hope it doesn’t!

Today, I am thankful for small favors.

 

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!

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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.