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.

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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?

Daily Prompt: Inhabit

Part of me feels like I inhabit only doctor offices and hospital rooms. Because Rare Disease.  (A virtual contact of mine said today, “It kind of feels like you’re going to the mechanic.”)

In actuality though I have my room; my own private escape from all things medical.  What can I do to make it more mine:  I have dark curtains and a few stuffed animals and books.  Always books. But that’s it.  I want to make it more homey, inviting, etc.

PS – Please check out my Teespring storefront while you are here.  Thank you! ❤

What else would you recommend for me? EDIT: This photo is from the Internet. Not my room but I love this! 😉

Daily Prompt: Solitary

A quick search states that solitary means: existing alone, unaccompanied, alone, friendless.

And it’s funny that I find myself alone as I am writing this post.  Alone, except for my cats.  I am a very proud Cat Mom.  ❤

At this point in my life, or rather my CS life, I am unaccompanied at my medical appointments.  But you know what?  Just because I go to them alone doesn’t mean they are any easier to manage or bear alone.

I have just read a few posts on this prompt and much of what I read talked about being an introvert or extrovert and how to manage your life as such.  I don’t know what I would call myself actually, but I guess my point is I wish I wasn’t in this medical world alone.  It gets very lonely and overwhelming sometimes.

Medical world, Rare Disease world, Brain Tumor world, all of it.  I can seem strong sometimes, because strong is the only choice I have.

Connect the dots

Sometimes, it’s fun to look back at from where I came.  My real medical life began in 2003 when I got diagnosed with thyroid cancer.  I hadn’t really been all that sick prior to that.  Little things here and there, had my tonsils removed when I was 19, that’s about it.

Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev.  Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!

I saw the endocrinologist this week.  With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good.  I’ve had better (see previous sentence) and I have seen much worse.

People can’t seem to leave my TSH alone.  It’s either too high; too low; too whatever and we have to worry about blah blah blah.  I just KNOW how I feel when my TSH is a certain number.  Can’t you all leave me alone?  (NOTE:  Mild sarcasm.  I get it.)

I saw Dr. Endo this week.  He loves my TSH at 1. something.  I hate it.

I love my TSH around .10 or .20.  But, he doesn’t.

Anyway, more blood work.  Checking of my T3 or T4 or something.  I don’t know.  Then, I see Dr. Oncologist in the next weeks to check The Ladies.  

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What’s new with you?  🙂

I’m mad

So, this post is just to get all this crap out of my head so that hopefully I can sleep tonight.

Welp.  I don’t sleep any other night, so why would tonight be any different?

LET ME BREAK THIS DOWN:

  • I have 2 rare brain tumors
  • I have a hereditary cancer syndrome called Cowden Syndrome
  • I had 2 brain surgeries and am currently experiencing issues/effects from having my brain scrambled a few times
  • Blah blah blah – I see a zillion doctors
  • I apply for disability 3 1/2 years ago
  • I GET DENIED for disability
  • I can’t work, I can’t understand and process things as quickly as I used to, etc. etc. etc.
  • Just a few weeks ago I found out about a job that’s in my field, PART-TIME, matches my degree area, pays INCREDIBLY, literally perfect on paper so I scrambled (ha!) and applied. I am very qualified for the job
  • FOUND OUT TONIGHT THAT I didn’t even get called for a damn interview for the position
  • ALSO, DO YOU KNOW THAT I CANNOT EVEN GET AN INTERVIEW FOR TARGET?!
  • What does God want from me?
  • One needs money in order to survive in this world!
  • Filing bankruptcy has been one of my worst fears since diagnosis and I have been able to avoid it.  Until now
  • I can’t work.  But, then when I find something that would be a STRUGGLE but do-able, I don’t even get a call to interview for it
  • I am a good person!  I have a degree!
  • What the hell is wrong with me and what I am I supposed to do now?  Sell my body on a street corner to make ends meet?

Enter Title Here on 7/27/17 and also, (GRAPHIC?)

I don’t really know what to say when I see pictures like this.  It makes my stomach hurt a bit.

But it’s me and who I am.  ❤

As I have written before, July is always a heavy and rough month for me.  Just because I ponder so much about where my life was and where I am now.  You can read this post as a refresher, but basically I was diagnosed with a 5 cm. brain tumor in my cerebellum on 7/18/11 and then I had a 13 hour brain surgery 7/27/11.  Then, I had another one a week later 8/4/11.

I know that people talk a lot about scars, what they mean, they give us power or strength to see what we’ve overcome, blah blah blah.  I don’t really have anything wordy or eloquent to say about this scar because to be very honest:  it just plain sucks balls.

I think the more I look at it, the more I talk about it or try to embrace it, it’ll be less taboo to talk about.  I read this tweet a while ago that (paraphrased) said:  You talk about your kids and your marriage and your job.  I don’t have any of that and I talk about my brain tumors and my fear of when I will die and what will happen to me.  I freaking love this tweet and hope you will be mindful of that if your friend has a medical situation they must address.

(NOTE:  Many times, at least in my experience, just because someone has brain surgery doesn’t mean the doctors were able to remove the entire tumor.  Please don’t just assume “Oh, they are fine” once they have recovered from their surgeries.  I believe in some cases a neurosurgeon can remove the entire tumor, but that didn’t happen at all in my case.  Plus, I have another smaller 2 cm. tumor that is encapsulated in my cerebellum.  One of my sincerest hopes is that my life after surgeries and with brain tumors can help educate someone about them and how to better support us.)

I am glad today is almost over.  Soon, or probably it should be already, July 27 will just be another day. I am working towards that….soon.

PS, if you’re on Twitter please follow #BrainTumorThursday.  Thank you!