My head (from 4/9/14)

When I look at the most recent picture/update (on my GoFundMe site), my eyes are drawn towards my head.  (To me)  I only see my head.  I only see it bandaged.  I only see me, laying in the bed alone, because I was the only one who was walking through this experience.  I remember my mom wanting to take a picture of me and I flat-out refused.  A picture of this? Of this moment?  Why?  Who wants to see this? Who would want to even remotely remember this moment in time?  She took this picture the night before the first brain surgery.  But she didn’t give up.  In hindsight, I’m glad I allowed her to take it, but I just couldn’t look at the camera.  I didn’t want anyone to see me like this.  I think the picture made it too real.  The camera made it too real.  Up until that next morning, I was still living in denial that I wasn’t going to have to have my skull cut open.

I have more pictures of after surgery.  The incision, its healing.  I looked at a few of those pictures a few nights ago and oddly enough, I felt a small out-of-body experience looking at those pictures.  I didn’t really identify, or know how to identify, with that person.  The person who had their skull opened twice.  The person who, almost 3 years later, is still dealing with the effects of a brain tumor and rare disease diagnosis.  In my defense, I know I’m better than I was.  And, with that being said, that gives me hope that in more time I’m going to be even better in the future than I am today.

Edit 5/8/17:  I was going through my Drafts folder and found this post.  So funny how this post brings up so much anxiety even from 3 years ago.  I am so thankful I have this blog to document my life.

2016 in review

I just did my taxes and I have to pay $607 in Federal and $120 in State taxes.

I am in shock.  And probably denial.  Is this really happening?

For anyone who’s heard lately of the GoFundMe scams, I assure you this isn’t a scam.  My life isn’t a scam.

My life is a mess.  My life is out of control.  My GoFundMe isn’t a scam.  Please believe me.

I think it’s time to look at bankruptcy.

 

EFF YOU COWDEN SYNDROME. 

EFF YOU LHERMITTE-DUCLOS DISEASE.

 

I hate you both so much.

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

Thank You, #2

Someone bought one of my shirts

wherever you are, whomever you are:  Thank you so much.  You are helping me share my story.  You are giving me strength to stay strong.

I am so grateful.

Love, Heather

PS.  If you would like to find out other ways you can support my Rare Disease life, please check out the “DONATE” page above or these following links:

Rare Disease Awareness storefront

My GoFundMe site

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.

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?

I’m not a good housekeeper, apparently

  1. I haven’t forgotten about Fun Fact Friday.  Just haven’t had any fun Fridays lately to write about.
  2. I DID NOT HAVE ANY POLYPS THIS LAST COLONOSCOPY!  In all my anger about not having the endoscopy I forgot to mention that GREAT news.
  3. I love to do genealogy.  After church today I spent 3.5 hours in front of my computer.  Doing it all.  I couldn’t get up from the computer.  It was if I was literally pulled to it.  AND, I found 2 of my mom’s ancestors that WE DID NOT KNOW ABOUT.  This tells me something, big time, about how much our ancestors want to be found.  Maybe in another post I’ll write about it.
  4. Here is a quick update I did on my GoFundMe page just now.  I love social media in all forms, and there are different audiences in each that I can reach.  Awareness; advocacy.  It’s all the same to me. It’s about getting rare disease stuff out there.  To the people.
  5. More on this post title:  It was play on words about “Housekeeping” on my blog.  As in a quick catch up.  In other news, I’m not going to post a picture of my room.  You’d see that “Bad Housekeeper” is written in my room, too.  🙂

 

Saturday ruined

Here’s a sure-fire way to ruin a perfectly good Saturday afternoon:  In doing your taxes you find out you owe $521!

*

After the Turbo Tax fiasco I had to go outside for a walk to clear my head because I was afraid I was going to lose my noodle.  I saw this pretty thing outside and it captured my attention.

When I got home I just did the next best things….I updated my GoFundMe page, wrote a small check to the IRS on the balance I owe, and ate a carb-filled (baha) dinner with mom.

I pray things look better in the morning.

20140215-200227.jpg

Another site

In my drafts folder I have about 4 posts that I am in the process of writing.  4 different posts.

Something happens and I know I want to write about that, but then life happens, and then a day later something else happens on an entirely different vein that needs to get on this blog, too.

Posts are coming folks.  🙂

In the meantime, I did create this.