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Life is Pain

Updated: Sep 21, 2019

Anyone who says differently is selling something - William Goldman (Princess Bride)


Sadly, this is true for me. Everyday, every hour, every minute something (usually multiple something's) is in pain. I have run through all of the pain scale, but mostly sit at a 5-6 on the pain scale (my pain is distracting enough to impact my activities). The few times I have hit 10's were after surgeries/procedures. Where all I could do is curl up in fetal position sobbing. The worst was less than a day after brain surgery I needed an urgent CT scan and could barely move on my own. So I needed people to transfer me and no-one thought to put a pillow on the scanner or anything to support my head. So my freshly sliced head slammed down on the hard plastic and I was unable to move it while I choked on my own spit while getting suctioned. I have several more stories, but basically yes I have had multiple experiences of what at the time was the worst pain I ever experienced and I lost any ability to cope.


I have had fluctuations in my ability to function based on pain. Even in high-school while I was working on checkouts I was using pain-killers and strapping up my arm due to the pain. I have spent years with pain doctors, tried multiple and high-dose opiates, anti-depressants, NSAIDS, anti-convulsants, off-label meds etc. I even went to pain rehab as an inpatient for 2 weeks, I left on more meds. My medication needs were getting so high the side-effects were getting worse than the pain. I slept for days on ends and had no ability to function.


What finally helped was quite an extreme move and I was given a surgically implanted device that delivers pain-killers straight to my spine. I have had this for at least a decade now and am almost due for another replacement (they have a battery life of 7yrs). When it was first implanted the relief and lack of side-effects took me from bed-ridden to managing to complete not only my Bachelors degree, but several others including my Masters and working full-time. It was desk job with VERY understanding employers and I spent every other minute in bed, but I felt useful. Sadly this didn't last for long.


While I was doing my PhD I got too sick to get out of bed again and thats where I am stuck now. The pump is doing it's job, sadly I believe without it my 5-6 level of daily pain would be too bad without it to live long. Even now if I am to leave the house or do much than the occasional wander around the house my pain becomes too much to tolerate. So I have to avoid any and all stress and activity to have pain that I am just able to tolerate most days.


Living life in constant pain is hard, especially when you have hard time trying to point out what part hasn't caused you pain as it is the majority of your body. as I type this its hurting my arms and my legs, back and neck hurt. It's a careful balance of trying to achieve stuff in life and not need more and more pain-killers.



Medtronic Pump
Intrathecal Pain Pump

This is a little montage of my pain pump. The doctor "talks" to it by holding the unit over where it sits in my abdomen. That lets him interrogate it and find out how its functions and my medications levels. Top right is how they add more medications via a simple needle. Bottom right is what the actual device looks like.



XRay Medtronic Device
X-Ray of my Pump

This is a fun X-Ray of my pump and you can ever JUST seen the tubing running at the back. Apparently the nerve roots at the base of the spine work well with the pain-killers for providing pain relief. It doesn't quite reach the head so isn't that great when recovering from brain-surgeries and I have to remind nurses I DO need additional pain meds. Luckily my great pain doctor randomly appears at the right time always and I know I can get him if needed.


Fun Fact: The pump beeps, after MRI's when the meds are low or if there is a problem. At one stage I had it going off every 15mins.....that was fun

Help financially - https://www.gofundme.com/keep-kirstins-head-on

More Info -

https://kirafaye.wixsite.com/kirstinscause #kirstinscause

#cci #eds #chiari

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