Thursday, February 27, 2014

And Then It Came Back

"And came back..."

I remember reading this words on someone else's Chiari blog, speaking of her post operative experience.
I thought, "How horrible, to go through that awful surgery, to have the elation of beginning to feel great, then the disappointment of symptoms slowly coming back--that would never happen to me-that must be REALLY RARE."
As I type this, I can hear the voice over from ABC's Wide World of Sports: "THE THRILL OF VICTORY....THE AGONY OF DEFEAT!!".   (I always wanted to research and find out how many broken bones that poor guy had in the commercial.)

I guess what I'm dealing with right now is the "agony of defeat".
The past few weeks have been particularly troublesome.
Headaches, Muscle Spasms, decreased hearing, blurred vision, trouble speaking, trouble swallowing, Dizziness...vertigo...weird numb sensations..numb face, fingers, back, pelvis.. I shouldn't type "pelvis"..that is very risque for a good Baptist girl...but,' s the truth. (and at least I'm not posting a picture.).  These are all intermittent, yet they can all be present at once, and can all be gone at once, usually it's just the same 4 or 5 things.

I know I shouldn't be.-but I'm a little angry about it.   I have been on this "positive in..positive out" mindset for  about 4 weeks...and I'm telling you..when I made that declaration-it's like I threw down the gauntlet and my brain said, "We will see just how positive you can be, Little Missy!"  (My brain uses the  Wizard of Oz voice when it says this, you know, the "I'll get you My Pretty!" voice) 

I try..I mean a really think I try to be encouraging. The whole reason I started this blog is to encourage others to fight this get down and dirty with not let it win, rob our joy or run our lives.  Well, my friend--my fight is waning. I'm tired of it, I've had enough and I'm full. When the first few symptoms reared their ugly head this past July, I think I handled it pretty well...then again in October when a few more popped back up...I still looked for the positives. And now, while I do look for the positives...and feel blessed in many ways...I still have to get out what and how I'm feeling and I just a word...BAD.

I've become a liar. I make no apology for it. I'm a stinking liar.  When someone says, "How are you feeling?"  I say, "I'm fine"  or "I feel good".  Who really wants to hear, "I feel like crap, I can't feel the left side of my face and everything you are saying to me sounds like the voice of Charlie Brown's teacher (wah wah wah wa wa wah), the back of my head is pulsating with every heartbeat and my right hand has been  numb since 6 pm last night (time now..10:26 a.m.), about every other hour I think,"maybe I should go to the emergency room" , remind myself of all the Chiarians that have recently passed away (9 this year that we know of), then brush it off by saying to myself-"Quit whining-it could be soooo much worse".    I KNOW no one wants to hear THAT.  So, "I'm fine" basically covers it.

I feel like there is no one to tell (thank you, Katrina Powell for FB chatting with me enough to get me out of that funk for a few hours) that I can be real with.   Whether that is reality or my skewed perception--I have no clue. I just feel horrible. I'm sad. I'm disappointed and I literally do not know what to do next.

Current doctor standings..picking up MRI tomorrow to Fed Ex to Dr. Kim.  Concerned that this has recurred because my Ehlers-Danlos Syndrome issues were not addressed prior to first surgery which may have resulted in the re- accumulation of fluid in the arachnoid cyst area and my cerebellum settling right back down where it was) also sendiing fillms to EDS specialist in Bethesda, Maryland,..Honestly-I don't want to be my own advocate anymore. I want someone else to do it. (Thank you, Desiree Twait for all of the info you have provided me on EDS and CCI (cranio-cervical intability). 

Tonight, my husband looked at me and said, "Are you depressed?" I said, "no".. but am I ?  Desiree suggests that I haven't gone through the "grieving process" for my old life..maybe that's true-but since I've had issues my entire life..what did I really lose?  Some friends......yes. I grieve for that, friends are really important and I truly envy people with long term illnesses that have people that are there with them-in the trenches-fighting the fight-crying for the disappointments and cheering for every victory (Misty Daley..your bestie is truly blessed).  I feel sad that I don't want to go to movies  and am not up for running upstairs to the gym to work out.  I'm sad that I know working full-time as an RN is so challenging that I'm afraid of it. I'm embarrassed that I say the wrong thing A LOT and people always point it out and I feel stupid.   I'm disappointed that I have to explain this ridiculous condition to the same people over and over because I want them to do their own come along side me and guide me to the next step, whatever that is.I'm mad at myself for being disappointed with them.
And I really feel bad that my husband has to deal with all of the above, every day. I'm sure if he were completely honest, he would admit the relief he would feel if he could simply send me back in for a refund.
So..yes..maybe I am depressed.  Maybe I shouldn't be sharing this in an open forum.
Maybe I should just continue the lie.

But then again...maybe you, or someone you love feels the same maybe it needs to be said.
Maybe just having a voice makes a difference.  Maybe this is just an elaborate pity party on my part.
But do me a huge favor..Don't tell me to put on my "big girl panties" and deal with it (I've always despised that expression).  I might have to knock you smooth out--or in the words of Bon Qui Qui-- "I will cuuut you".

Just let me whine and lick my wounds. The fighter in me will return- I'm sure of it.
And when she does...she will track down that meek little voice whispering, "And came back", wrestle it to the ground, slap a muzzle on it and lock it away for a good long while.
After all, I am from Mississippi.


  1. Thank you for posting this. I feel this way so much of the time. I really felt you when you were talking about how you could see your husband turning you in for a refund, I've said almost the same thing to my husband also. Chiari takes so much from us and we have to figure out how to just get through a day whether we do it well or not is up to the our pain for the day. Sometimes I just want to scream "this isn't fair" but who says life is fair? And so goes the circle. Hope you are having a good day.

  2. Yes, thank you for posting this as I can definitely relate. I pray for all Chiarians daily. My heart breaks for the children that are fighting chiari at such early ages. May God Bless and Have Mercy on us All <3

  3. Hi Michelle, I am also from Mississippi. ..still here in fact...I am fighting Chiari 1 with arachnoid cysts as well. I am going in this Friday for my first decompression surgery with duriplasty. you have a Facebook page?