I know there’s only so many ways:

…to say, “I’m tired.  It’s hard.  I am scared.  I am alone.  I am struggling” because, let’s face it.  That’s pretty much the entire theme of this blog and I have pretty much got that covered.  If it can be said, I probably have already.

But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.

Here’s some things going on here as of late:

  1. Our refrigerator broke.  We have been living out of a cooler for dayzzzzzzzzzz.
  2. I’m dealing with daily migraine headaches
  3. I was rear-ended last week while I was in my car, parked.  Thankfully there wasn’t any damage to my car and I am feeling better now
  4. The unstable man at the doctor last week is still on my mind.  That incident changed me.
  5. My passenger side car door was dinged by an older man.  When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot.  Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand.  When I started to take his picture he quickly de-escalated.
  6. I haven’t done my taxes yet
  7. My car needs some desperate work to it
  8. I had my mammogram yesterday.  Those days are always heavy on my heart.  85% lifetime risk of breast cancer never gets any less scary.
  9. Out of the 2 pairs of jeans I own, one of them is coming unraveled.  It’s quite funny.  No, not funny – sad.

I can go on. But, I won’t.  That’s enough for me.  For today and hopefully tomorrow.

 

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.

 

DRAFT from 1/3/2013

This blog serves me so many purposes and it’s given me an avenue to share my story (which includes my hopes and my fears).  There are no judgements, and all I’ve received since I created this blog July 2011 I hope I can give back to others.  Sure; my life isn’t what I thought it’d be at 40 years of age – but who’s life is what they’d thought it be at XX age anyway?  It’s about making lemonade with the lemons you have and all that jazz; learning to dance in the rain…blah blah blah.  I guess it really IS about those things.  🙂

In the new year I plan to write about other things in my life, because let’s face it…my life has pretty much only been about brain tumors and cancer risks for the last 18 months.  But I’m slowly getting it that there IS more to me than my brain tumors.  Once the afternoon of July 18, 2011 arrived and the knowledge of the brain tumors was SHOVED into my life – all the things I thought I could do was shoved down the toilet.

I just want to be heard – I don’t want to be treated like I have the plague.  That’s it.  I suppose this blog is helping me to “be heard” but for the people whom I was once close to….?

Either you are on this journey with me or you’re not.  I’m seeing people’s true colors now and it’s breaking my heart!

That has been one of the hardest things of all of this.  Seeing how people treat me differently.  I don’t share much at all about CS or LDD with real life people, except for a token few (Hi L!  Love you!) – and a few people from my church who I KNOW love me from the bottom of their hearts and do not pass judgment on me.

I know that life is going on – for them and for me.  I know that we all have things going on but it’s just that I still have trouble sometimes.  I have trouble fitting in.  I have trouble connecting with people.  The people I thought were my friends.  Of course I don’t want to bombard them with, “Oh I’m seeing the oncologist today, my neurosurgeon tomorrow, and the OB-GYN on Friday…” because let’s face it.  Who really wants to hear all that?  But even just a, “Hey – Heather how’s it going with things?”  would mean so much.

I’m on the pity pot.  I get to be here sometimes.  This is who I am with what I have on my plate.  Sometimes, I have a lot on my shoulders and I decide to write it all here so I can leave it here and then get on with my life.  I miss having conversations with friends about things.  Conversations – 2 way convos.  I miss it.

These feelings have been on the surface for me for the past little while – and it’s still hard for me to understand all these changes going on.  So, I get to write.  And I get to continue counseling.

You know…with a life threatening surgery last year…I was so afraid that I would be different.

But it has changed me.  I see things differently now. I process things differently now.  This really is the Heather Show now.  And you know what?  THAT IS OK.  This is what I need.

No words. Again.

I have thought for the last few weeks about what I can write about.  What I can catch you all up on, because life has moved very quickly as of late.  Mammograms, kidney scans, dizzy episodes interrupting life, etc.

While that’s a great thing, it’s also sometimes difficult for me to manage.

But, regardless, life happens on life’s terms. I continue to learn that.

I just clicked on a blog I follow, and found out the devastating news.  I never met this person, but I was one with her.

I am so sad.  I am so sad for her family.

World Rare Disease Day 2/29/16

Today’s the day!  World Rare Disease Day 2016.  I had an idea of something to do at my local hospital today, but sadly they denied approval.  Nevertheless, while Social Media is a great outlet, I still hope to do something else today.  Stay tuned!

In case this is your first visit to my blog, I am living my life with 2 Rare Diseases:  Cowden Syndrome, and Lhermitte-duclos Disease.  Cowden Syndrome is caused by a mutation in the PTEN geneLhermitte-duclos Disease is a rare brain tumor called gangliocytoma.

wrdd-2016-care

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.

 

Roadblock

Gosh, I have had such writer’s block these last few weeks.  I have so much on my mind, including a lot of anxiety about my brain.  I am noticing some more changes with my gait, memory, and processing.  But I have sat down at this computer many times and just cannot formulate anything.  I am so worried about being strong, being positive, but what’s odd is usually I don’t worry about that here.  I use this blog as a place to vent about everything that is on my shoulders.  But, for some reason it’s not flowing.  Why is that?  I know that if I don’t get these worries out, they will continue to eat me up inside.  If I could, I would ignore all these feelings away.  But, it doesn’t work that way.  Life with two brain tumors and a rare cancer syndrome takes a lot out of me.

Some days, I feel like a phony.  That if people knew the real me – all of my worries, doubts, fears, anxieties, limitations, they would laugh me out of the building.  I think I put on a good front most days.  But, I fear the day when the wall comes down and people see the real me – when someone sees that I cannot do what I once did.  I don’t want anyone to think less of me.

Reality bites.

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.  🙂

Because words

You know how words have power, right?  Words such as, “You didn’t win the contest”, or “You’re going to be a father!” can turn a world upside down.  Just as “You’re doing great!  You’re fantastic!” can send someone over the moon.  Words are so powerful and hold so much meaning.  Tone of voice, the written word, all of it.  So powerful.  I am humbled by it all, really.

Since diagnosis I have had a lot of words in my head, and continue to write on this blog to honor my truth and voice.  I have no other outlet, really, so this blog it is.  I’m not complaining, just stating a fact.  But yesterday, something happened and this blog didn’t carry me as far as I would have hoped.

I had a brain MRI the end of March and just received the Final Report the day before yesterday.  I scanned it as best I could, saw the words, “stable” several times, so felt as good as can be expected.  Stable is amazing.  Eventually, these brain tumors are going to grow and I have to be ready for that day.  I don’t know if I am really ready (probably not), and I fear that I will come unhinged when I am told there is growth.  Anyway, I digress…

I find interesting that I didn’t even catch these words when I read them; Mom read them out loud and I was turned into a pretzel because of them. Words, people.  Remember how I mentioned in the beginning that words are powerful?

Stable postsurgical changes are noted in the left cerebellar hemisphere with volume loss.

Volume loss.  I’ve never read or heard words like that about my brain.  All day I could tell my anxiety was rising.  Volume loss.  Part of my brain is gone.  Granted, it’s the diseased part, but still.  I came unhinged.  Left work early.  Caused such a hitch in my day.  I couldn’t stop thinking about the space in my brain.  All because of those 2 stupid words:  Volume loss.

Volume is the quantity of three-dimensional space enclosed by some closed boundary

Loss failure to keep or to continue to have something

Even now as I write this, and really do my best to process my feelings, I’m stuck.  Stuck stuck stuck.  Do you want me to just “Let it Go”?  Oh, sure.  Well, if it was that easy I would have done it yearssssssss ago.  🙂  I’m not going to will-away these feelings.  You know why?  Because it sucks.  And, I’m going to say it sucks rocks.  Yes, I know the power of positive thinking, and yes I just began to meditate again with a positive mantra, but this is exhausting.  Being positive all the time is exhausting.  Part of my brain is gone, and I’m sad.  I’m mad.  I’m scared.  I’m alone.  I’m worried.  I’m panicked about not having money.  I’m terrified for my future.  I’m worried how my balance is progressing so badly.  All these things I worry about on a moment to moment basis and I’m constantly putting on a face trying to be positive?  It sucks and I’m tired.  I want my brain back.  I know that I have to let go of what was, and focus on what is.  But you know what?  What is kinda sucks right now.  Can you blame me for wanting things to go back as they once were?

I get life doesn’t work that way.  Life is about progressing (hopefully) and moving forward.  I know all of this.  It’s just that every once in a while something happens, or I hear something, that sends me over the edge.  Doesn’t help that I have been so depressed lately.  I still wish I knew what that was all about.  I’m exercising 2-4 times a week, working on mindfulness when I’m eating, still in therapy, and really focusing more on this blog where I write all this junk out.  Because, that’s what most of this stuff is.  It’s just junk.  It’s not doing me any good to hold on to all this fear and crap.  But, I can’t help how I feel.  And, imagine if I make the decision for the prophylactic bilateral mastectomy, then what?  I have had 2 brain surgeries, a hysterectomy, 2 thyroidectomies, what else of my body do I have to give to Cowden Syndrome and Lhermitte-duclos Disease before I can have peace of mind?

 

 

THE week

Some  weeks are Cowden Syndrome and Lhermitte-duclos-free.  Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal.  I think it is a tad easier to accept these things that I do not like.  Maybe I’m getting tired?  Or stronger?  Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on?  (Volunteering at the animal shelter?)

I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least.  Suffice to say I didn’t get the scan as I needed to.  So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”.  (Quotes added but inferred by both she and I.)  Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound.  Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun.  But, we’ll see.  We will see.  Whatever it is it is.  I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things.  I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely.  THAT, I get.  And, I’m thankful for.  Doesn’t make it any easier, it just is what it is.  Does this sound like growth?  HA!

Friday I have a brain scan and then the appointment with the oncologist.  I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing.  But I have noticed something that is concerning, but nothing I can do about this either:  I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big.  Getting the information out of my brain in one direction is OK.  But what HAS been a problem as of late is when I have to do that in several steps.  Meaning:  When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard.  Frustrating, difficult, confusing, not easy.  And, plain ‘ole not fun.  I noticed this last month when I was at church.  I powered through, because there is no other option, but man it was harder than I wanted it to be!

Isn’t that how most of feel at times about life?  That it is harder than we want it to be?  Sure, I don’t want brain tumors and high breast cancer risks.  I would rather be carrying my Fossil bag at Disney World enjoying the park! 🙂  But, I’m not.  I’m navigating slowly this rare disease life.  It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have.  I wouldn’t have this blog, either.  I realized that’s kind of a big deal, too.