Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, November 3, 2011

Over Medicating or Narcolepsy? Why I'll fall Asleep Anywhere.

Brother-in-law, Allen, with his two biggest educational
supporters, my sister, Heather, and his Prof. & Mentor.
I don't know what's wrong with me, for all the good that is happening, I've been requiring a lot of sleep, and my body doesn't seem to care when and where it gets it.
If sleepy time was confined to my bed I'd call this the normal fatigue side-effect that I get with every therapy, but it's not.
Like I said yesterday, I'm forming a routine like I haven't had in years. I'm waking up able to take care f myself and X in the morning! How amazing is that?
I'm also able to do afternoon and dinner routines, which is absolutely fabulous.
But did I mention in the middle of the day when I'm, say, meeting with my NP, in family family, or watching my brother-in-law present his Master's thesis (Go, Allen, Congratulations!), I doze off.
Dozing off while watching Allen present his thesis reminded me a little bit of high school, but unlike high school, yesterday I was doing everything I could to stay awake!
Allen, presenting his Master's Thesis on Lean Management
 of Medical Device Products, one of his final tasks before
graduating from Mass. College of Pharmacy.
I started searching my purse for mints, gum, anything that would stimulate me somehow, then as I was in the purse, I started to nod off, my eyes closed, me head went down slowly, I snapped my felt back up and through a mint in my mouth.
But then again, almost immediately after, mint in mouth, the same thing happens again, but this time I'm distracting from Allen worrying people about choking!
Hopefully I won't look like a dying narcoleptic today when I have my "official" interview with the VT Journal publisher as a freelance writer. Cross those fingers.
This problem started being an issue last week during our families very first therapy appointment.
Yes, we are now all in this together to be sure we stay sane.
And this little monster stayed home, but
I couldn't let Halloween pass without
showing a picture of my Spanish wrestler.
(where does he come up with these ideas?)
I do think the therapist got the picture of how sick I am, since I kept dozing off with J and X acting like it was completely normal for me to pass out mid conversation.
The therapist has invited just J and I back to discuss things we may not want to in front of X. I thought she meant relationship issues, fighting, now I'm pretty sure she means the prognosis of my disease.
I've only seen people with end stage disease fall asleep all over the place like I do.
I'll do it when I'm eating, walking up to my food fallen around me. I'll do it when drinking, being awoken only by the cold splash of whatever I hoped to get in my stomach.
I spoke with palliative care about this and we switched my pain medications to something more easily detoxified through the body, especially medications that took altered kidney function into account.
My kidneys are running fine now, but it's predicted it may not stay that way. I'm thankful for the painful but life saving metal stent that's gotten me here. I'll give that cross up to God. It, honestly, feels like such a small problem alongside others.
Of course with me being me, with my luck, the next day palliative care called, and I was told I couldn't use the new med due to my skin allergies.
I'll go back in two weeks. Hopefully this will pass by then. 


Chris said...

Hey, I've seemed to have developed a bit of narcolepsy as well although can't imagine falling asleep as I take a sip of water... I wonder if there is such a thing as treatment/disease related narcolepsy? Anyway, I hope you get the freelance writing job, that sounds like a lot of fun and wondering if I might be able to find a gig like that myself... Take good care and know people like myself are cheering you on to keep going no matter how tough it is. Cheers, chris

infant said...

This narcolepsy posting, completely useful..