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 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.

 

I’m just plain sad

Years ago, I started to accumulate items for my Hope Chest.  Now, granted, I didn’t have one (nor have I ever had one),  but I sure wanted one.  And, I sure wanted the items that you’d store inside it.  Slow and steady, I started gathering items I was sure I’d need one day: baby clothes.

Well, today I stumbled across said items in a bag shoved under my bed.  Onesies, Christmas baby socks, newborn Halloween clothes.

And my heart broke a bit.

I realized that pretty much the only dream I ever had will not come true.  Cowden Syndrome robbed that opportunity from me.  Even if I just had the brain tumors, maybe I could have been a mother.  But, since Cowden Syndrome is a hereditary cancer syndrome, (Note:  Cowden Syndrome isn’t listed on that link.  #FAIL) there were outstanding odds I would pass this condition to my child.  (Even if I had had prospects for marriage, but that’s another thing entirely.)

But, I guess my point is:  I thought I had pretty much resigned myself to this fact.  The chance for motherhood will never be mine.  (The Chance).  No guarantees, I get it.  No way to know the future, sure.  But, even as I eked out my late 30’s, I still had a tiny bit of hope that I could be a mother one day.

So, in pondering about this tonight…I guess I am OK.  I thought I had done well with this whole thing, but seeing those baby clothes this morning brought up some angst that I had hoped was well hidden.

It wasn’t.

I’m sad.  I’m lonely.  I’m alone.  I’m just plain sad.  Sad that I know what Cowden Syndrome is.  Sad that I know what Lhermitte-duclos Disease is.  Sad that this is my life.

I’m only acknowledging this here.  I try to put the hard, nitty-gritty stuff here.  And, then get up and take care of business.  Volunteering, continuing strengthening my spiritual self, living my life the best way I can.

Sleep will be good for me.  Tomorrow is a new day.

I will work hard on leaving the sad here.

Goodnight.

 

 

For the record

Once you get diagnosed with a chronic medical condition – you see who your true friends really are.

(Or aren’t, as the case may be.)

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EDIT:  This post in no way reflects my feelings towards those special few people who have donated to my GoFundMe account these last few days.  I am very grateful to you all.  Thank you. ❤

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?

 

Stable is as stable does

I have had a rough few days.  Not sure why; not sure what triggers them.  I have to accept the bad days, along with the good.

So, I had my brain scan a few Fridays ago.  Saw the neurosurgeon the following Friday.  Stable.  Stable.  Stable.  In fact, the radiologist said “Grossly stable.” GREAT NEWS!  If there hasn’t been any growth in 5 years, I hope that the next 5 years will be the same, you know?

Although I struggle with wanting needing to know everything about the brain tumors.  Has there been minimal growth?  MRI’s aren’t 100% accurate.  So, how much are we off?  When will I be told there IS growth?  When will the “MRI’s not 100% accurate” show growth? Does that make sense?

I know I must accept the stable.  And, don’t get me wrong – I do.  But these dang brain tumors keep me up at night.  Sometimes I can’t believe I have 2 brain tumors in my cerebellum.  Why me?  What did I do to cause this?  Why do I have 2 tumors? Blah, blah, blah.  Same story, different day.

So, I got up this morning and went to the gym.  I try to combat the bad days with something good.  Something different.  Something outside my comfort zone.  Putting stability into my life where I can.

Hearing. Finally?

Tomorrow morning I may or may not go before the Judge in my Disability hearing.

Will you please say a short prayer, or send up good MOJO to the stars for me?

I’m so nervous, but have prayed for my peace of mind and heart for weeks.

Thank you very much.

EDIT:  Aaaack.  I set this to be published 2 days ago in case I wasn’t near my computer today.  Found out the hearing has been postponed.  Thank you for the prayers.  I still welcome them and am very grateful.

Not the best way to start my Holiday

As some of you know, I am scheduled to go before the Disability Judge next week.  This date was postponed from an earlier date this summer because I had to get new representation.

Well, I received a call from my advocate (the new one) Wednesday morning.  He asked for my permission to request another postponement.  I was driving so I couldn’t hear nor follow very well what he was saying to me, but something about him “falling on his sword” and just having received over 1000 pages of my medical records.  All this information shoved down my throat on my way to celebrate my Thanksgiving.

I felt ill.  And, still do.

He’s known about this date for months.  In fact, since this summer when I retained him to represent me.  He mentioned something else about “not having prepared the brief” as he’d wanted to.  He had been slammed with hearings this past month.

Well, right.  MINE WAS IN THAT GROUP TOO!  WHY AM I THE ONE WHO SUFFERS BECAUSE YOU DIDN’T DO “AS YOU’D HOPED TO”?

 

Is this a sign?  Is this a sign that I shouldn’t be applying for Disability?  My doctors seem to be on board, but why isn’t anyone else?  I’m not making this up!  I have 2 brain tumors, a hereditary cancer syndrome where I’m at risk to get many types of cancers, I have severe headaches several times a week, as well as having had 2 brain surgeries and am experiencing many symptoms from all that!

I guess part of me understands having just received the medical records.  And, evidently the Judge needs to go through all that, too.  So, if it was just because of that, I’d understand.  But, he could have just been schmoozing me, too.  How would I know any different?  It’s not like I trusted him with the most important thing in my life.

I’m so confused.  I’m so scared.  IF the Judge doesn’t approve the request for postponement, then what?  He has to do it anyway.  Will he be ill-prepared?  This is my life we’re talking about. It’s not like I can find another advocate at the drop of a hat?  Hopefully the Judge will approve it, but then what?  I will walk in Wednesday with an advocate who hasn’t done enough to help me?

So as of today we know nothing.  I guess I’ll find out Monday.

Oh, and I’m still broke and destitute.

Did I mention that Lhermitte-duclos Disease and Cowden Syndrome have ruined my life?

 

Do you need a fresher-upper?

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. ”

NOTE: There may be some information in this post that you may find uncomfortable. Please be warned! 🙂

Have you heard of Fresh Assist? It is a nifty product that states: “Get Clean in Between!” What a novel idea! Getting clean(er) can only be a good thing in my book. #AmIRite?

The Fresh Assist Spray came at a very good time in my life. While I haven’t (yet) been diagnosed with IBD or something similar, I have struggled for many years with chronic constipation with episodes of diarrhea. I always attributed my GI issues with being overweight, and throughout the years I seemed to manage the episodes relatively well with over the counter items and adding a fiber supplement to my diet. With all that being said, the times I experience(d) my GI issues I did have a lot of struggle getting “clean”.

Now I find myself in another situation with struggling to get “clean”. My fine-motor skills are decreasing quickly. (My fine-motor skills are decreasing due to the two brain tumors in my cerebellum. Your cerebellum is your balance center and you can read more about it and how it functions here. Your cerebellum is also called the “small brain”. I have had 2 brain surgeries and the tumors are still there.) I have difficulty grasping things (pencils, keys, etc.) and often drop things.  Now I have found toilet paper is difficult for me to grasp. Such a bummer! Can you imagine what a pain that is? So, this spray has come in handy. The directions are pretty self-explanatory: “Apply 2-3 sprays to TP, Wipe, Flush.” It made the toilet paper wet a bit, but nothing too drastic.  Plus it’s safe on plumbing.  Another win!

freshassist

I received the “Cooling Chamomile” scent, but as far as I can tell, there isn’t any scent with this one. (At least to me I didn’t smell anything.) There’s also a lavender scent, but I think I have a lavender allergy so this was a lucky thing for me to not receive that one. If you’re sensitive to smells like I am (read: migraineur) this Chamomile option would probably be best for you. I love the fact that Fresh Assist is free from: gluten, nuts, and parabens. I am very mindful of limiting parabens in my life as much as possible, and now especially since diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.

freshassist3

However, with all this being said, I am just not sure this did as much for me as I’d like or expected it to. It is in fact “cooling”, which can be such a blessing when you’re wiping constantly. But, that’s about all I noticed. I still have to wipe several times, but thankfully my private area is receiving comfort. I never got into using baby wipes because in fact, I never felt clean.  Plus I worried about the wipes clogging the toilet.  This spray does help me in feeling “cleaner”, but that’s it.

freshassist2

I would recommend this spray if you have any lower GI issues and need relief from constant wiping with toilet paper. If you’re hoping for another result, I don’t think this product is for you.