This Just In… A Jettison to Right Now…

Really?  Another Addition to my DisABILITY Resume???

Edna Taylor Conservatory 205

Pretty much all I could say this past Monday was, WTF… 

           This past Monday, July 8, 2013, I learned the results of an EEG I had the week prior to investigate why I have been experiencing some very strange and scary episodes of visual distortions, confusion, disorientation, loss of memory, strange smells when nothing was there and even hearing music when none was playing.  Little did I know, the smells and music were precursors to the other things and to, what I now know, are me having complex partial seizures.   Super, WTF.

            Come to find out, brain surgery increases the risk of developing seizures.  Nice, thanks for that extra added residual.  Perhaps I could have some cheese with that?  If one is to develop seizures it can start years later.  It’ll be three years for me in September.  Thanks’ my lovely aneurysm. 

            My neurologist, an amazing doctor by the way, Dr. Frederick Edelman, spent nearly an hour and a half with me going over the results, showing me the actual EEG and explaining the areas that indicated seizure activity.  He patiently answered all my questions, and then shared a long time talking about what medication I should begin.  This was a really hard choice as they all have side effects that can be quite distressing and downright horrible.  One of them is irritability.  I looked at Dr. Edleman and said, “Listen, I will not take anything that’ll mess with my attitude”. 

           I asked, do I really need to take meds?   Turns out I guess so, primarily because I now apparently pose a risk to myself and others driving and the little seizures could lead to the big convulsive ones.  Special…

           On to the next choice… turns out all the options have an irritability clause but the one I choose, carbamazepine or tegretol, seems to present the least risk, yet still on the yikes scale, and it’s the least expense being a drug available generic.  Still, I have to be aware of side effects and will need blood monitoring, but considering my choices, what’s a seizure to do.  That’s my attitude speaking…  I really do hope I don’t develop the rash…

            Back to WTF…  Really?  Do I really have to deal with this extra added introduction of disability?  I think I’ve developed enough of those acquaintances….  Come on Big Guy Upstairs – don’t you think I’ve had enough disability shoved down my throat, at my brain, at me?  Dang…   WTF.

           At first I just sat in my car after the diagnosis and choosing my anti-consultant meds (eww…), in shock, then tears, then I went directly to the pissed button.  Skip all those other “phases of acceptance”, I just wanted to be pissed.  I wanted to scream, yell, and beat something up.  I wanted to make believe what just happened didn’t and I wanted it to just go away, I wanted a do over.  Fat chance there Cheryl…  it’s here and it ‘s here to stay.  Well, ain’t you the lucky one.  WTF.

            I texted my pal Beth – “you home?”.  “Yep” she replied.  So, trying desperately to keep tears at bay, and then buck up by distracting myself with imagined strength, I made my way to Beth’s house.  “I got a bad feeling about this Cheryl, you had your appointment today…”  I looked at Beth and lost complete control.  We stood there, Beth holding me as tight as she could while I just lost it.  Crying, screaming, asking why, I just lost it.  Then I got really, really mad.  Again.  I went right to the pissed button.  WTF.

            Beth spent over an hour with me rambling with my pissed button fully engaged.  Why is it that this is happening to me again?  Why, why, why, why and, WTF.  Talk about noise!

Beth’s analogy – “You’re right in the middle of a shit storm Cheryl” and this too will pass.  No pun intended.  Gotta love my pal Beth, she always makes me laugh.

Guess it’s on to getting to know my newly introduced friend.  I hope she likes chocolate…. and silence…

Cottage Grove Road Antiques-Beading at Beths 003

This entry was posted in Acceptance, Add another disability ingredient, Complex partial seizure, Disability, Disability Noise, Discovery, Inspiration, Motivation, Non Fiction, Self Help, Transition and tagged , , , , , , , , , . Bookmark the permalink.

6 Responses to This Just In… A Jettison to Right Now…

  1. dlp says:

    Is this current time as in this past Monday? Or is this the continuing saga of the book?

  2. Mary Kay Clark says:

    OH, wow! Sorry to hear this is current WTF!! I love the humor in you and your writing. Please let me know when you would like to get together again for coffee sometime. Mary Kay

  3. Valerie says:

    Dear Cheryl: I too am very sorry to hear about this latest development in your health. A little over a year ago I went through a series of medical problems, one after the other, just when one got a bit better, another one slammed me and then another. I felt like I couldn’t catch a break and felt very desperate — oftentimes just calling friends and bursting out crying. My psychologist, well-intentioned, sent me a note, saying you’re strong, you’re a survivor, you’ll get through this. Well I told her when you feel that lousy, being told you’re strong and you’ll get through it isn’t very helpful. I’m not saying to give up or that having resilience is a bad thing, but sometimes you just have to let the emotion out and be pissed off.

    Valerie Brown

    • Thank you for your note Valerie. I appreciate that you shared this with me. It seems that once bitten by disability that trickle down effects multiply as time goes on. We never know when they’ll show up but often when they do, we get another experience to deal with and yes, be pissed off about. It’s not easy “being strong”, it not easy surviving, but somehow resilience continues and even through the pissed off moments and days, resilience has a way of stepping in and nudging us to the next phase of moving on with another experience that we can add to our expertise of living with a disability. Of the many people I know who have gained this expertise, you are certainly an expert from whom I can learn a lot from! Enjoy your day Valerie, Cheryl

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