In a fit of pain in February, I began to look for other people who had dealt with the same pain, the same…horrific, mind numbing freezing, burning, prickling, itching crap that I’m still dealing with daily. To be exact, I figured I could contact the man featured here:
I found this informative website run by his mom. Graham used to surf, skateboard, build houses, and he was a mason. Now he’s still working on his balance. This happened to him in 2009!!! I learned a lot about rat lungworm in those several days of fanatical searching. I learned that 2 – 3 years after the fact some people are still on serious pain killers…and some can’t even wear long sleeve shirts because of their skin sensitivity.
This scared me.
Immediately I tried a self elevating pep-talk.
Maybe they weren’t working as hard as I am…Maybe they were in worse shape when they got sick…Maybe they shied away from the pain like John wouldn’t allow from me…Maybe they eat processed crap food…Maybe they aren’t juicing 1-2 times a day and eating organic, non gmo produce…Maybe they aren’t doing tons and tons of yoga..Maybe they haven’t been eating their own homemade gluten free breads…
Maybe. Maybe. Maybe.
I had all sorts of reasons why maybe I wouldn’t be in pain…why my recovery could be faster, but secretly I worried.
What is worry?
Worry is a waste of the imagination.
I don’t want to be in pain like this 2 years from now. So I decided to stop wasting my imagination, and use 10% of my energy that was invested in complaining about the pain towards contacting Graham’s (The boy in the video) mother for advice and a social support system.
She responded, and for the absolute first time I felt as if I was able to communicate someone who knew what they were talking about…first hand. She and John will have lots to talk about when we meet (because we HAVE TO!!!), since they were essentially Graham and my only continued constant support system.
She lived with her son in the hospital from January to May.
John lived with me from early November – mid December.
He did things for me I couldn’t do for myself, with the simple dream that I may recover mentally at least. He fed me, helped me learn to walk again, guided me in conversations, reminded me of….everything I forgot, patiently waited while I struggled through sentences, bathed me, brushed my hair, held me when I sobbed that I couldn’t do anything for myself, pushed my wheelchair, helped me stretch, helped me poop, sat with me in the bathroom because it took so long on the pot EVERYTIME!, reminded me that I was beautiful, strong, and was going to recover, stroked my hair as I sobbed about not being able to do anything myself, sang to me, played music from Rocky to motivate me to struggle out of bed when I could, helped me dress, wiped my ass, gave me enemas, took me to the lake daily to feed the ducks, lay in the sun, stetch, held my hand as I sobbed about not being able to do anything myself, and practice walking (once I could), gave me probiotics, gave me my meds, patiently listened as I sobbed about the pain, connected with the hospital staff when I was too far gone to do so, calling my wheel chair a motorcycle and such.
I was so far gone I wasn’t sure I even needed hope.
I did. I needed it badly.
I peed my pants the other day (I didn’t write about it because it was what it was. Urine in the pants, big deal). I had the urge while I was baking and ran to the bathroom, but mom had the door locked and was inside taking a shower. I ended up losing it right outside of the bathroom door.
You are still an incredibly sexy woman.
With piss in my pants. ..
I love that man.
So, the good news: Pain management.
Graham’s mother and I have been in communication. Her response focusing on pain management:
About the pain, interesting about this. Graham had the pain too when he went into the hospital. A friend of my sister’s, who’d also had it, told me to give him noni, that he’d taken noni when he had it and the skin pain went away. So I did, gave it to Graham through the stomach tube while he was in the coma. It was dried capsules of noni from a good vitamin company. When he came out of the coma the skin pain, which had mostly been in his legs, was pretty much gone. He had numbness in some areas of his face and fingers but not in his legs. So I gotta think noni would be worth trying.
Um……OH MY F*CKING SCIENCE!!! THERE COULD POSSIBLY BE A WAY TO ALLEVIATE THE EXCRUCIATING SKIN PAIN IN MY LEGS BY EATING A FRUIT?
John and I immediately got online and bought a two month supply of dried noni. My thoughts?
If it takes away 5% of the pain, I’d be incredibly stoked. 50% would be a gift I couldn’t even imagine, “pretty much gone” is a concept I haven’t seriously considered until I read it from her. I could “pretty much have no pain?”
Sign me up!
I haven’t been this stoked about the recovery process since it began!
Last night I decided to write this while I was sobbing uncontrollably through ridiculous spasms, my right arm was pulsing and burning the cold, rutheless flame that is currently the bane of my existence. We had already ordered the Noni (paying over $27.00 in shipping to get it here faster).
I was in such a state last night that I accidently stabbed myself in the forehead with a fork that was sitting on the arm of the couch when I involutarily flew into the fetal position when the pain in my arm flared up. I was in too much pain to remove it.
I had to wait until the flare lessened a bit before I could push my way off of the digging prongs.
I couldn’t extend my arm to set my fingers on the jkl; keys…so I had to wait until this morning to finish my thoughts.
I guess I’m finished now. 😀
Tomorrow’s not guaranteed.
Live it as such.