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.

 

Updates

I think I have posted some crowd funding links here in the past.  But, there have been a few changes to the links so I wanted to do a new post.

I created a storefront on Teespring a while ago.  I created custom t-shirts that have a two-fold purpose.  They can be conversation starters:  “What does ‘Ganglio What’ mean?  What does CHAMP signify?”

Maybe you don’t know the answers to those questions technically, but since you read my blog (hopefully continue to do so, hehe) you could say, “Oh.  A friend of mine has a brain tumor called Gangliocytoma.”  OR, “I follow a girl on Twitter who’s username is @ZHeatherChamp and I think she’s a champ too!” (insert smiley face here.)

If you bought one of those shirts you are helping bring awareness to my blog.  Which in turn brings a conversation about Rare Diseases.  Or brain tumors.  Or hereditary cancer syndromes.  Any of that!  Or all of that!  Win, win right? (Reason #1)

Reason #2, which is kind of a big deal, too.  I receive part of the purchase price to help me navigate my medical bills.  I won’t rehash the trauma.  It’s real and it’s bad.  😦

Thank you thank you thank you!  I’m forever grateful.

 

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?

 

Name change, headaches, and food for thought

A few days ago I tweeted out that I need to change my blog name to, “Headaches for Heather”.  Because headaches.  All the freaking time.  And dizzy problems.  Added to memory problems, and the list goes on and on and on and on…

I put on a good front most days.  I have had 5 years of doing this so I am getting pretty good at it.  But, I’m tired, you know?  I am freaking tired.  I am tired of having to “act like I feel well” when some most days I am exhausted.  No one sees me on the inside, no one takes the time to ask how I’m doing, because I know they don’t “really want to know”.  Just the pleasantries.  So I do the pleasantries in response as best I can.  I am not bitter, just have accepted what now is.

However, when I am feeling a bit lonely (like I am tonight), I wish I had someone to call.  I don’t write this for pity from anyone, just documenting my life with two brain tumors and a rare disease and sharing my story in my little space of the Internet.  The reality is I don’t have anyone to call.  No one to have dinner with, go shopping with, etc.  And I have to pause and wonder why that is?  I had friends before diagnosis, or at least I thought I did.  Where are they now?  Have I honestly pushed them away?  I am always mindful of the things I now disclose to certain people, and even if others do bring up questions about my health I usually limit my responses (although it does depend on certain circumstances).  So, that leaves me the questions:  Did I bring this isolation upon myself?  Or did those once around me leave because my life became too hard for them to continue to share it with me?

Beyond BRCA

Have you heard of the BRCA gene?  Have you heard of the medical decisions Angelina Jolie made a few years ago?  If you’re on Twitter, I can tell you there is quite a lot of discussion about BRCA and hereditary breast cancer.  However, there isn’t much about PTEN mutations, and I want to change that.  Granted, PTEN is rare and doesn’t occur as often, but it’s just as serious.  I carry a “faulty” PTEN gene, which also increases my risk for breast cancer, not to mention many others.

I am very excited to share this from My Gene Counsel and I hope you will take a look at this link.

Guest Post – Meet Heather

I am really thankful that a few more people have reached out and shared their Rare Disease story with me.  I am so blessed to have this blog and to be able to share my story with others!  Heather agreed to do a Guest Post for my blog and I’m so excited to introduce her to you.  Besides our name, she and I have a lot of other things in common too!  Most notably Lhermitte-duclos Disease: it’s very rare for me to connect with others who have LDD.  If you would like to contact her on you can do so here.  Please meet Heather!

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I was born with a large head which was the beginning of my medical drama. I had multiple surgeries during my school age years to remove benign tumors. When I was in 10th grade I started getting headaches and double vision. It took the doctors a couple of weeks to figure out what was going on but eventually I was diagnosed with a brain tumor. I had brain surgery within the week. The doctors could not remove all of it because it was wrapped around my brainstem. The preliminary pathology report was brain cancer. After a week we got the final pathology report which was L’Hermitte Duclos. I was also told that I probably had Cowdens Syndrome because of all my surgeries and the fact that I had a large head. My world changed in a big way. I went from having no problems in school to having a learning disability. No one could tell that anything was wrong with me unless I got overly tired or stressed which unfortunately happens a lot in High School.  I needed a second brain surgery when I was in College because the headaches and double vision returned. The doctors removed what they could and I continue to get follow up MRI’s. Thankfully things have been stable now for almost 18 years!!!

Two years ago I was diagnosed with breast cancer. I found out after the fact that I was at an increased risk for breast cancer due to the Cowden’s. I was asked if I wanted to undergo genetic testing during this time. I was told that I met all the signs and symptoms for Cowden’s Syndrome but they could tell me officially if I had it. At first I did not see the point in paying a lot of money to find out that I officially have Cowden’s. I ended up getting tested because my sister had just gotten married and wanted to know if she had it. It was easier for them if I got tested first to see where the mutation was. So last year I officially was diagnosed with Cowden’s Syndrome. I had to have a hysterectomy 4 months ago because of complications from the breast cancer and having Cowden’s.  Currently, I am dealing with cognitive side effects from having two concussions two months apart. The doctors tell me that my case is different from most people because I have had two brain surgeries too.
Having CS and LDD is not fun as all of you know but I am doing the best that I can. I try to take one day at a time and do the best that I can with what I have.  My mantra is “In life, you can only play the cards you were dealt.” I get tired of always having something wrong with me so I tend to push through things so I can continue to do the things I enjoy. I may have a rare genetic mutation and a complicated medical history  but it is not going to define who I am.

Goals

My biggest hope is that with this blog I can help someone feel better.  Either someone newly diagnosed with Cowden Syndrome, or brain tumors (any), or Lhermitte-duclos Disease, or any rare disease.  That by sharing my story as openly as I have it will give another the strength to take their next step forward.  You see, I didn’t have that when I was diagnosed.  I hope to help it be different for someone else.

I received a compliment today from someone on Twitter (you know who you are!) that absolutely means the world to me.  Never, in a million years, did I think of today – 4 years ago.  I want others to know that it gets better.  Now, I may scream, cry, and get on the pity pot as we are all wont to do, but I do what I can to leave all that garbage here and then go on about my days:  Volunteering, working on-call when I can, etc.  It’s not easy, but I try.

I have thought about PT these past few days and can’t believe I forgot to mention to him a few things:  that I have struggled with fine motor tasks (I notice them.  This may not be a big deal to others but I know there is a change) and I should have focused more on my gait as one of my concerns.  And also told him that when I need to stand up on things (like when working out) that’s a big, freaking, deal.  It really is.

So, I don’t know what tomorrow holds, or next week or next month.  I know my next PT appointment isn’t until next week, which will give me more time to ponder about what I hope to do in PT.  Part of me wonders if my brain can make these changes, neuroplasticity I think is the correct term.  Can I?  Is there too much damage?  Was my brain scrambled too much to make any progress?  Will the insurance people count minimal progress and any progress and give me all the appointments as approved?  All this mumbo-jumbo insurance stuff always ruffles my feathers, but I am here to try.

Yup

Anything is better than nothing, right?  I know I’ll have another post soon after the next appointment because I really want to document this PT journey.  I know there will be some tears.  Frustrated tears are just par for the course now.  But, once I get the tears out hopefully they won’t come again.  🙂

“If I Had Known Back Then Who I Know Now: Not So Rare After All”

Hi guys!  I am super excited to share this with you.  And, it pretty much sums up why I still write on this blog and why I  share my story on Social Media.  I believe in the power of networking!

Taking Stock and Fun Facts Friday 1/2/15

Making: My bed. Kinda.
Cooking: I half-made a tamale last night. For reals. 🙂
Drinking: Horchata and a kidney and liver detox tea.
Reading: Eat, Pray, Love.
Wanting: To go to Las Vegas. Always.
Looking: For balance (I copied this from Jaana)
Playing: With Simon (a stray cat my neighbor started to feed a few months ago.  We have started to bring him in at night and are hoping to find him a home.  He’s amazing!)
Deciding: What I need to bring for my sleep study tonight.
Wishing: I had the right medication to help me with this depression.
Enjoying: Listening to my nephews interact with each other as they play on their PS4.
Waiting: For the Mailman.
Liking: That I have a place to workout where I feel comfortable and welcomed.
Wondering: When I will kick this depression in its ARSE.
Loving: That my nephews are so kind and loving to one another.
Pondering: that 2015 is as close to 2030 as it is to 2000!
Considering: Selling more of my purses.
Watching: BIG BANG THEORY. It is my lyfe!
Hoping: For more joy.
Marveling: At how cunning and baffling depression it is. It’s no joke folks.
Needing: some good new tunes (I copied this from Jaana too).
Smelling: Tamales!
Wearing: Black slippers.
Following: More and more blogs. I love it.
Noticing: My brain is getting kind of wonky lately. What’s up with that?
Knowing: Heavenly Father knows the deal. I have to give it up.
Thinking: My toes are so cold.
Admiring: People who are so focused and zen.
Sorting: Clothes for laundry.
Buying: NOTHING (right now).
Getting: More focused on working out more consistently in 2015.
Bookmarking: More books. 🙂
Disliking: Headaches.
Opening: More books. 🙂
Giggling: At the conversations my nephews have with each other while playing Minecraft or the Lego movie game.
Feeling: Motivated to organize a Tweet chat on Twitter for those of us with the same genetic mutation that I have. There are 13 of us so far! Rare Disease my big toe!
Snacking: On Dove Peppermint Bark. Those candies are THE DEVIL.
Coveting: Fuzzy blankets. I may or may not have bought 2 more this year!
Resolving: To not worry about what I don’t have. To focus on the positive things I ALREADY have!
Hearing: My nephews’ reactions to everything PS4.

I found this at This Mom’s Gonna Snap and in turn she borrowed it.  (Her post as the original link.)

Social Media

One of these days I will find a streamlined way to update things.  But for now, I update each website when I’m near it, or whatever seems easier.  (The Facebook page has gotten a few updates lately, and I joke that Facebook is a necessary evil.)

I’ll figure it out.  Eventually.  Ideally I would update my blog and then copy the update everyplace else.  We’ll see…

This morning I updated my GoFundMe page as that reaches any Twitter followers I have.  Each site has it’s own purpose and I fully believe in supporting each site as best I can (the Facebook page is a bit easier to share pictures, while Twitter is best for short medical updates).

Right now I am texting someone I connected with on Instagram who has Cowden Syndrome!  This never ceases to amaze me.  I wish someone would have told me 3 years ago that all this social medial has a purpose when used for good!

I’m a believer in the Social Media game. I really am.