Daily Prompt: Avid

I am by no means a writer.  I use this blog to document my life since diagnosis, so I guess it’s more a journal, of sorts.  Not that there’s anything wrong with that!  But, I have always wished I could write well/better.  I like to do these Daily Prompts when I can to gain some practice.  Hopefully it’s improving my writing.

As a child, I was definitely an avid reader.  I remember being holed up in my room all weekend reading either these or these.  I probably didn’t see the sun on most weekends when I was a teenager. One of my best memories is going to the mall each month to get the next in this series! 


Then life happens and I kind of get out of the habit of reading.  Weird.  Books are in my veins.  I have worked at 2 different bookstores, too!

But lately?  Something has changed.  Since diagnosis of brain tumors and surgeries, reading has been much more difficult for me.  Not enjoyable.  Almost painful and completely irritating.  When I have to re-read the same paragraph many times, I just get so angry.  At myself, at my life’s situation, everything.

Thankfully I changed that mindset a few months ago.  I have picked up reading again with a vengeance almost.  I know how beneficial reading is, and I view it as physical therapy for my brain.

For the sake of my brain for now and the future, I am once again an avid reader.  I just finished this book and am now reading this one.

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Do you like to read? What would you recommend?

 

 

Links of reference

If you don’t already know, I have a place on my blog where I’ve gathered links of PTEN/Cowden Syndrome information.  I also wanted to share that there is a PTEN Hamartoma Tumor Foundation website:  Please visit it often!

Thank you!

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.  🙂