New custom item!

Check out this link to see some new items in my storefront.

I am very thankful for your support.

I do it and I do it well

I criticize every single person when they do it wrong.

When I write “wrong”, I mean violate my privacy.

Maybe I should worry about your privacy too; however, I wish you would worry about your privacy. When I am standing behind you in line at the doctor and hear your address, telephone number, birthday, your mother’s maiden name, your temperature, etc. being shouted by you or the office staff, do you realize I could be recording you!  Who knows what or where that information could end up?  Of course, I’m not recording you.  But, there are bad people everywhere.

I have complained many times and to several different people (managers, administrators, etc.) at the hospitals and doctor offices.  Nothing has changed. What has changed is me.  I know enough to not shout my home address and birthdate for all in the waiting room to hear.  I now write down my address or birthday and give it to them through the window.  That works for me.  That is how I handle my privacy now, because no one else gives a rip.  Trust me.

I now criticize a little less than before.  And I mean a very little.

 

This isn’t a Wordless Wednesday

I just am missing Disneyland and Disney’s California Adventure something awful! ūüė¶

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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.¬† ūüė¶

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

 

February 1, 2017 Daily Prompt: Resist

I have tried to do these things in the past, but since I’m not a writer I don’t do them all that often. ¬†I wish I was a writer, and could write eloquently and express the things in my heart. ¬†I usually just mush everything and end up writing the way I speak. #fail

Anyway, I saw the prompt for today and it resonated with me. ¬†Time to pick it up and be the Blogger I only dream about! ¬†ūüôā

Resist

For years after diagnosis, I resisted everything. ¬†I don’t have brain tumors. ¬†I don’t have a rare hereditary cancer syndrome. ¬†I don’t have to go to the doctor all the time. ¬†I’m not high-risk for breast cancer. ¬†These brain tumors will not grow. ¬†Resist. ¬†Resist. ¬†Resist. ¬†

Only today, almost 6 years after diagnosis, am I starting to get a glimpse of acceptance.  Resistance is futile.  Especially when you have a sketchy medical status.  I can no longer resist what is.

I have 2 brain tumors.  I have Cowden Syndrome.  Resisting the reality of that is a recipe for disaster.  My life has been a disaster and continues so.

Today, I tell you I will try harder.  I will do better.  I will stop resisting.

Today.

Growing

I’m experiencing a lot more esophageal issues as of late. Pain. Pain. Pain. Getting worse and more frequent.

Thanks to Cowden Syndrome I have an innumerable amount of polyps in my esophagus and part of my stomach. 

Surgery has been discussed. (Not really a fan of removing my esophagus.)

Medication has been discussed also, but one of my goals in this life is to  decrease the amount of meds I take on a daily basis. And you know what? It wouldn’t help the pain. OR STOP THE POLYPS. 

I understand suffering is part of life. 

But where is the joy part? Rather. Where is the joy part for me? 

Am I ever eligible to feel that?

Honestly, it doesn’t quite seem that way. 

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.

 

 

Crying wolf?

One of the bad things about Cowden Syndrome is that if you see something odd on your body, it’s a struggle to keep your mind from going to the bad place.

And by you – I mean me.

I have an 85% lifetime chance of getting breast cancer. I really hate those odds.

  1. In the shower just now, I found something on my breast I’ve never noticed before.
  2. I keep telling myself, “It’s just dry skin. It’s ringworm (ew). It’s nothing.”
  3. Don’t overreact. ¬†Don’t cry wolf. ¬†Let it go. ¬†See how it is tomorrow.
  4. But what if it IS something? I can’t ignore odd things popping up on me. That’s the epitome of PTEN mutation. Lumps & bumps.

I hate to seem like I’m crying wolf though. ¬†And, what if I can’t see clearly through my own eyes?