Wordless Wednesday 9/20/17

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Daily Prompt: Recreate

There are several moments I wish I could recreate:  my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.

I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.

Left eye (and not the good one)

A few months before I was diagnosed with the brain tumors, my left eye was twitching constantly.  The top and bottom eyelids wouldn’t stop twitching!  It was so annoying.  I went to a few natural doctors around that time (not for the eyelid specifically) who did different types of testing, including muscle testing.  The doctor said I had an intolerance/allergy (I cannot remember the exact term he used) of American cheese, wheat, and something else that I can’t remember either (hello brain tumors and menopause.  I can’t remember crap anymore!)

It’s interesting to note that at that time (6+ years ago) I had been loving er, I mean living on triscuits and cheese.  I think that’s only incidental but hey!  You never know. hehe

I don’t remember either if the supplements he started me on did anything to help my eye.  I do remember though getting diagnosed with a 5 cm. brain tumor 5 months later (cough! cough!)

So, my point is:  I don’t think my left eye has twitched once since this whole Rare Disease stuff began.

Guess what started twitching 3 days ago?  And, coincidentally I skipped my brain scan this mid-year.  (I am ready to do the MRI’s yearly now.)

But that’s really here nor there.

*ALSO:  I have made a few more changes to my Teespring storefront:  Please take a look!

Daily Prompt: Educate

To be honest, I hope that my blog will help to educate (to anyone who will listen) about Cowden Syndrome and Lhermitte-duclos Disease.  Have you ever heard of Rare Diseases?

I began this blog Day 1, or rather Day 2; the day after I was diagnosed with a 5 cm. brain tumor in my cerebellum.  6 years later and I still don’t have the foggiest idea what I am doing.  🙂

But, I’m trying.   Thank you for hanging on with me!

PS:  Please check out my Teespring storefront while you’re here!

Daily Prompt: Continue

What other choice did I have?  I couldn’t lay down and give up. I had to continue forward.  But, when people told me, “Oh Heather, you’re so strong. I couldn’t do what you’re doing.” – I wanted to knock their block off!

It’s recovering from freaking brain surgery people!  You do what you have to do in order to not die.  You would have done the same damn “thing”.

PS:  Don’t forget to check out my Teespring storefront!

To work

A few days ago an acquaintance of mine asked me, “Now, can you really not work or do you just not want to?”

You know, when someone starts off like that with me, it’s really a lose-lose conversation.

As I said, she’s just an acquaintance.  She doesn’t know the daily ins and outs I deal with.  In fact, no one really does (she doesn’t know me well enough to ask, but had she asked, I would have told her.)  She droned on about, “People who get disability get worse” and blah blah blahhhhhh.  To be honest, I had already tuned her out.

But, do you see where I am going with this?

Think about this for a moment:

  • I don’t enjoy being destitute
  • Do you think I love worrying about bankruptcy every moment of my day?
  • Do you think it’s fun not having money to buy my basic needs (clothing, toiletries, etc.)?
  • Do you really think I am home eating bon-bons watching daytime TV?
  • Just because I can walk doesn’t mean I am not dizzy, in pain, managing a migraine, trying to concentrate and focus on what you’re saying to me, etc.
  • My life isn’t fun.  It’s damn hard

I can’t do what I once did.  I am applying for jobs.  I am looking.  But, maintaining a full-time job (as I did before diagnosis and surgeries) isn’t possible.  And, evidently, even finding part-time employment isn’t happening for me.  Also, I can’t trust or disclose in an interview, “Oh BTW, I have 2 brain tumors and damage now and get dizzy often and need frequent breaks to sit or stand and have to drink a zillion ounces of water now because since surgery I am more dehydrated than ever and sometimes I get migraines too..and…and…and…”

What the hell am I to do?