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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, June 24, 2013

Why A Daily Pitocin Shot?

Please get me some Pit - and fast!

Recently I wrote about the three shots I need daily.  I promised I'd explain why I needed pitocin and here I am, ready to deliver.  (Ha! A pun as you'll see shortly!)

I'm not completely sure how it was that I stumbled upon this bit of hope to make my days marginally better. But when I did read about it, it made complete and total sense.  There is, however and unfortunately, no way to measure one's pitocin level - or not routinely.  But my medical history - as far back as 1979 - convinced me that this would be something my body needed.  

What IS pitocin and why is it needed?  Pitocin is actually oxytocin when it's in a woman's body. It's a neuromodulator in the brain - and don't most of us with CFIDS and fibro have trouble with neuro-anything? Back in 1997ish, I'd read that really there are only a few known reasons for oxytocin but they are mighty big ones!   As many women already know - the hard way -oxytocon is needed in order to push out a baby during labor and then to make the uterus contract after delivery of that baby.  Without that contraction, a woman will bleed out.  It's also believed to help maternal bonding and breastfeeding.  Because of recent research, oxytocin has even been dubbed the "love hormone."  However, we won't get into that part today.  (In researching parts of the oxytocin story for this post, I came across other, updated reasons that might show the importance of oxytocin in other areas, but that'll have to wait for another post, my lovelies!)

Back to 1997ish.  My brain went Bingo! at reading about pitocin's (oxytocin's) role in childbirth.  After all, my thinking went, child #1 was a week late. Furthermore, my uterus didn't contract at all and within seconds I gushed out half my blood volume, almost dying in the process.  Thankfully, we had one of the best ObGyns in NYC, but I remember him screaming for more IV pitocin as my body went into convulsions and the bleeding wouldn't stop.  Everyone in the delivery room held me down so that he could stitch away at me and thus save my life, screaming also, "keep her down! Keep her down! Why is she still jerking?  More pit!  Keep her down!" in a voice no one ever wants to hear.  Yep. I had a 10-pound wonder and it made me laugh to no end that my ObGyn went around the university hospital center making sure everyone gave my daughter a good look at the nursery.  She was, if I may say, indeed splendid.

Child #2 was a whopping three weeks late and showed no signs of ever wanting to leave a perfectly happy and comfie home.  Lest you wonder if I had my due dates correct, child #2 came out looking like an old man, shriveled with long nails and lots of hair, having weighed in at 9 lbs, but having been in my belly at 10 lbs. - having lost substantial weight because the placenta had become very weak from "old age" and wasn't delivering blood efficently to the baby.  It horrified my new ObGyn (we had moved) because I did indeed have my dates right and he had "sort of" doubted me.  Child #3 went two weeks late and having learned the lesson from child #2, labor was again induced.  And pitocin was further needed after delivery, in order for my uterus to contract, yet again.  (Just for your info: that child was also a 10 lb. wonder - see the picture above!)

Adding to all the complications, child #1 was a mid-forceps delivery and child #3 was a vacuum extraction.

So, did it not make sense that I had a bit of a pitocin problem?  I mean, the handwriting was on the wall - how much clearer could it be?

Evidently not clear enough.  My GP and rheumy/immunologist were reluctant to go the pitocin route.  They were, understandably, concerned about going to such drastic measures when there was no real literature out there about pitocin and helping CFIDS/ME/CFS and fibromyalgia.  But after two years of debates (yes, 2 years!) they gave in and the grand experiment started.

Within minutes of getting my first injection I noticed that my eyesight was better.  For once, my bad memory came in handy.  I was reading a book when that first shot was given - I'm a complete chicken when it comes to needles and preferred not to watch the thing going in.  About five minutes later I yelled out to hubs, who was on his way out the door, "hey, I can see better!  What's that all about?"

I'd already forgotten that I'd had a shot.  Groan!  But I also forgot that I'd read that if you do indeed have a pitocin deficiency, it should register with your eyesight within 10 minutes.  That was the acid test!

Well, like the kids say, duh!  Good thing hubs doesn't suffer from a poor memory - knock on wood and a tphoo! tphoo! tphoo!

So what's this thing with eyesight all about?  What we have, according to my rheumy, is a problem of the brain's inability to correctly interpret the signals from the eyes.  Who knew?

So, there you have it: I've had these pitocin shots daily since approximately 1998.  I consider it a good move. My overall plan is that if I can improve my life 1% here, 2% there, .5% in yet another area, pretty soon those numbers add up to what is, for me, a significant number, one that makes life more bearable.  So, there you go.  The pitocin is helping in some indefinable way, more than just the eyesight.  I consider the improved eyesight to be just the tip of the iceberg.

And my brain, which is always thinking in very frightening ways, can't help but wonder, is this a reason perhaps why women get CFIDS and fibro more often than men?  We all pretty much agree that what is known as CFIDS and fibro may indeed be different illnesses but at the moment put under the same umbrella.  Who knows where MY subgroup will end up?  Food for thought?

As always, I hope everyone's doing their best, only better!  Ciao and paka.

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