Tag: self-injection

Immunosupressed = True; Neti Pot = FAIL!

i spent the day up at Columbia.  no fun.  i just heard back from the doctor, and my white blood cell count *was* low.  The cut off is 3.5, and I was 2.8.  I think its called Neutropenia, right?  Or is that just a suppression of one type of white blood cell.  Everything else was fine, chest x-ray was fine.  Anyway, I’m off the IFN for the week.  I go back on Tuesday for bloodwork again.  If I’m back to normal I will restart the IFN at a reduced dose and ramp back up.

This evening, generally feeling much better than the past few days.

As per my naturopath’s instructions, I got a neti pot and tried to use it, but had somewhat of a comical failure.  I followed his instructions, and also watched a demo on youtube, but I couldn’t get it to work right.  It would just stop up in my top nostril and not go out the bottom.  In one attempt it ran out the back of my throat into my mouth, that was the closest I got to any flow.

If you know  how to use one of these things, and know what I am doing wrong, please comment! (LOL)

Along the way, I found a funny one.  Watch all three rounds of irrigation…

P.S. I weighed in at 203.4lbs.

Sick in the Mountains

I’m at a conference in Banff, Canada.  I gave my presentation yesterday.  I’m feeling pretty sick today

I had the weirdest rough night.  i think im getting a cold.  My room is really too hot, but I can’t control it because there is only one window and it is 12 inches square.  Really weird design.

I injected last night.  and crashed to sleep.  woke up ~5hrs later totally out of it.  this seems to be a new trend in the injections: waking up 5 hrs later.  I was really out of it.  the wildest part is that i wake up and go to the bathroom and was so out of it i didn’t lift the toilet seat cover! and peed onto the closed toilet!!!

i mean i had a quick reaction time and only splashed a little bit on the seat. and kinda threw a towel on it and the floor. and washed off my legs.  and was back asleep immediately.  but it was really surreal.  to be that out of it.

and then i woke up later with chills. haven’t had them for weeks. i think the altitude is making it worse. supposedly ppl only drink half as much up here at alititude.  so it must affect all drugs?

i slept through my alarm, but i pulled myself out of bed to catch breakfast right befor it closed.  food is in this big cafeteria.  but no one was there.  they had all gone off to their conferencey things.  i sat in the farthest scenic corner and struggled to eat my food.  I’m having trouble with food again.  I have no appetite, and it is not appealing.

but also it is the cafeteria effect. i dont know how much to eat. i have to point of reference: these are not my bowls. i dont know how much cereal i’m putting in. i didn’t prepare the food so i have no idea what size portion i am putting onto my plate.  because my own hunger is unreliable, i’ve been relying on measurement to know how much i need to eat.  i’ve figured out routines.  but here, i have no frame of reference.  probably the best were bean quesadillas. i mean they were shit quesas, but it was plain and filling. and i knew how much i was eating and how much i would want!  there was a standardized quantity.  totally disorienting.

Life will be better in 11 months

O mentioned that she was imagining what my life was going to be like in 11 months when the drug treatment has become so routine, and then is over.

i think my life is going to feel so awesome and easy in 11 months

like:
i wont have to shoot up
i’ll have lots of energy
i will have made it through
i will have an appetite
i will eat anything i want
i wont have to take anymore anti depressants and anti anxiety drugs (which make it so I can’t orgasm)
i will be able to have all the orgasms i want
i will want to eat more than watermelon, smoothies and watermelon.  oh and frozen pizzas
oh, life will be better in 11 months
I hope.
PS I just addd the “hope” tag

I feel the sleepy undertow again

It is kind of amazing to feel the side effects of the Interferon coming on again.  Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.

This morning I had my first “I don’t feel like eating anything in the whole world” feeling.

This evening I felt the sleepy undertow.  I lied down around 6pm, and felt like I could just go to sleep.  I felt like it was going to be so hard just to get myself up.  I had a friend coming for a walk at 630, so I forced myself to get up.

So all my old friends are back.  Fevers, Loss of Appetite, and Exhaustion.  Side effects make constant companions.

I will fight them, though.  I will fight them with water, food, exercise and meditation.

I sound rediculous, right?  I’m just reminding myself.  I guess I don’t really care what I sound like b/c I know it will work.

Feeling better this morning

i hope i’m not speaking too soon, but this morning i just feel like i am a little bit hungover.  like three glasses of wine hungover.  i slept through the night.  i shot up around 1am.  its 11am now.  i slept 9 hours.  if i had chills and fever i was able to sleep through them.

It was relatively cold outside (74 or so) so S proposed not using the AC last night, and just having lots of fans.  So it was in the high 70’s.  Maybe that helped.

Tired, achy, and sick feeling, but this round was a whole order of magnitude better than the first round.

Post Injection: Rough two days

The last 48 hrs have been pretty rough.  I woke up Tuesday feeling like had done a really hard workout, then drank the better part of a 12 pack.  My whole body ached, I had a pounding headache, i was nauseous, and I felt like it was all going to get worse if I moved.  But I moved.  I got up.  I slowly felt a little better.  But the headache never went away (despite some Codeine), and the chills and fevers came back in the evening.  I did manage to sleep last night, but again, woke up feeling like crap.  I felt better mid day.  This evening I’m panicking about the injection I have to give myself.  I’m scared.  I spent an hour on a park bench wearing my ice vest alternately trying to meditate and succeeding in crying.

Spoke Too Soon: really bad night

it seemed like it was going to be an easy round this time, but i spoke too soon. I went through a mild round of chills and fever, felt better, and went to sleep around 11, drugged and seemingly peaceful.

 

I woke at 130am with the worst chills I have had yet.  Much worse than the first night I started the much higher IV dosage. I tried to get warm with the heating pad and relax as best i could, but my muscles were on the threshold of spasming and going into shakes.  Shivering at the top of the stairs, I called S for help.

He turned the AC off, brought luke warm water, warmer sweatpants, a winter down blanket, arranged the heating pad, and held my hand until I/my body had calmed down enough that i was not shaking anymore.

Sometime later I realized I had started sweating. It is amazing how I can’t notice that liminal moment when I transition, I only notice once I am already overheated and feverish.  I pushed all of my warm stuff off and crawled out of bed.  I think S was there by the time i got out into the living room.  AC back on, ice packs on the chest, drinking cold water.

The fever was still going strong when S went to be around 3am.  I tried to get to sleep.  i took even more sleeping drugs.  my mind was racing, and my body was aching.  i tried to meditate.  i tried to do guided visualizations.  i listened to Music for Airports. and still I was sweating, and tossing and turning with no real chance of sleeping.  It reminded me of the second day of IV infusion, when I couldn’t sleep all night. 

As the sun started to come out, sometime before 6am, I thought I might try to sleep on the couch.  sometimes moving into a new bed helps me.  its like i think i’m starting the getting-to-sleep process over, with a clean slate.  i pulled off the cushions, brought out my pillow and sheet, set down my liter jar of water, and went to put away my ice pack.  coming back to the couch i forgot about the water, and kicked it over, spilling a liter of water on the floor and splashing it all over the sheet and cushions.  it was too much.  i just sat down on the wet couch and cried. 

it felt good to cry.  i was really frustrated.  and i couldn’t really express it.  and i haven’t cried in some time.  and the crying was maybe the thing that made me tired enough that no matter what, i was going to be able to sleep.

I finally slept around 7am.  I woke around 1030am. i feel like i got hit by a truck.  or maybe like i did a hard workout, then drank a six pack on an empty stomach.

what i don’t get is why there were two waves of chills/fever, why the second one was worse, and why the self injection seems to have such stronger side effects, at least on the first night.  I guess mainlining any drug is the best way to take it.  Maybe that or snorting it.  LOL.

so, my mind was racing the whole time.  i kept remembering things i needed to do.  and ideas i had had but had forgotten, and questions i had, and thoughts i wanted to remember.  so i wrote them down in the book O gave me.  in the dark.  my handwriting is bad enough when i can see what i am writing.  check out what it looks like when i can’t.  I think i will be able to decipher these runes.  I think so, but it will take an effort.

Insomniac Notes 1

Insomniac Notes 2

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