mystic_savage

I'm still irritable in spurts, but they seem to come & go. Reminded that I've been off of SSRIs now for seven months and am still managing well, considering, you know, history and chemistry and worldview and stuff. Had a good, quiet, productive day at work though...no struggles there. And the kids are liking drama camp. And I'll be asleep in another half an hour, no problem.

Started reading my journal tonight, from when I was diagnosed with fibromyalgia in 2005. In that time there has been so much change, a huge, huge amount of change. It's maybe no wonder I'm a little nuts? Although, to be fair, I was more than a little nuts to start off with. But in a good way.

Gratitude-ness today: got a package in the mail with birthday presents from Ed & Katy. The card was awesome -- Katy made it, and it may be the most beautiful card I've ever gotten. It went straight up on my wall. Got two yiddish books from Ed (which i can't wait to read!!!) and an Alice Hoffman novel from Katy (which I've already started reading!!!). Had a bath tonight, a long, hot one. Ate a good breakfast this morning -- the cafeteria workers at UWMC have started to get to know me a bit, and I feel like they always look for the most perfectly cooked pieces of bacon for me. And I found the perfect compass-on-a-chain pendant for my steampunk outfit, but it also looks good with my real clothes. And--I've decided I'm going to check out Norwescon this year. Poke my head into a few sessions & get a sense of whether it's my thing or not. (From the session descriptions it seems very much my kind of thing, particularly the writer workshops. But I'm speaking more about atmosphere.) Allen gave me a ride home from the workshop last night & we had a mini-date & that was my dose of real love for the next few days. So there is a lot to be grateful for, as always.

Have the kids this weekend.  They went with James to hapkido this morning while Karen and I figured out the materials list for Penny's loft.  Ok.  To be honest, Karen figured it out and I just asked a lot of annoying questions ("So...the little quotation marks are inches, right?") (which, thank Christopher Guest, I happened to know because of the Stonehenge scene in Spinal Tap).  I hate math and sort of dread this project.  Next step is to buy the lumber and get it home (two challenges there in the lack of $$ and lack of reliable transportation -- lack of $$ is the big one).  Final step is to build the danged thing, which I think Karen would just do for me if I keep Sam and Tera for a few hours so she can work uninterrupted.  Karen loves this sort of thing.  I'm kind of useless at it.

BUT: three loads of laundry are completely done and folded, and I just finished a load of dishes & will be watching Sam & Tera this evening so Karen & James can be out for awhile. Also?  I fed everyone lunch.  Not bad for someone whose self-concept is that she is completely lazy & irresponsible and unwilling to do anything that resembles work.

Tomorrow is a self-sacrificing visit to Hell on Earth Family Fun Center.  The plan is to get there the minute it opens and leave an hour later, before it gets too crowded.  I can't tell you how much I really, really hate going places that are loud or have a lot of people in them.  But going there is part of the Being A Better Parent intention I set at the parenting workshop I took last month.  I realized that I'm pretty good at being a fun parent at home, but that I never take the kids anywhere to do something that is fun for them unless another adult initiates it.  And even then I go under protest.  So this Family Fun Center thing?  It was my idea, and the first of a potentially large number of such outings.

Monday is the beginning of the "Living Well with Chronic Conditions" workshop series I'm doing at group health.  I think I know everything about it already, but I'm trying to stay open to the possibility that I might actually learn something that will improve my quality of life.  One key issue I've identified is that there are challenges unique to living with a condition that is mostly hidden and never bothers me--until it does.  One of the challenges is even remembering that I have a condition and taking care of myself in a way that avoids its symptoms.

This morning is good -- almost no pain at all & am having a productive day at work.  Looking forward to an evening to myself tonight & more sleeping.  I didn't sleep that long last night & there isn't any reason that I can spot why today is good, but I'll take it!

Posted via email from mysticsavage's posterous

More like a 4-5 instead of an 8 on the pain scale.  Will probably be recording a bunch of stuff about physical pain in the next month in prep for the appointment at the pain clinic.  De-friend me now or skip over those posts if you don't want to read that stuff -- I won't hold it against you.  It's only interesting to me because I'm trying to tease out all of the things that add or subtract from pain.

Here's what I know--

Some foods make me feel more pain, particularly when I eat them in abundance -- the nightshades (potatoes, tomatoes, eggplant, peppers) and corn are the worst.  Wheat & dairy seem to be more or less ok if I don't make them too central in my diet.

Getting less sleep makes me feel more pain.  In fact, if I don't get enough sleep 2 or 3 nights in a row, that's almost a guarantee that I'm going to be hurting all over in a few days. 

Exercise is supposed to help, and very, very mild exercise does help (right now, about 10 - 15 or 20 minutes of exertion at a time).  A "really good workout" of 30-45 minutes feels good right afterward, but then wipes me out for a couple of days, and increases pain.

I'm taking fish oil capsules 3x a day since Sunday.  I don't notice any analgesic effect yet, but am committed to taking them for a couple of months to see if some wondrous magical health benefits come raining down all over me. 

Cold/warm doesn't seem to have an effect.  Very bright light and loud noises bring on headaches.  Sunlight often hurts my eyes. 

Headaches and acute pains are sometimes dulled by acetominophen, but I pay for it later in gastric pain.  Ibuprofin and aspirin are even harsher.  Alcohol numbs pain for a short period of time, but it's fairly toxic to my body and my gut is then inflamed for days, even with one drink or one beer.  Marijuana has helped in the past, but I can't afford the brain cells.  It has helped most with IBS symptoms, but has not really done much for next-day fibro pain.  Narcotics seem to help for acute things, but, like the NSAIDS, they don't do very good things for my innards.  So, all in all, I avoid medication unless I really, really can't stand it anymore.

Distraction/other sensation helps a lot in the moment, but not afterward.

So that's what I know so far.

V.

It's been long enough since I've had a full-blown stretch of fibro symptoms that I had forgotten what they were like.  A couple of weeks ago I was reminded what the pain was like -- body on fire from the inside out, all over achiness, feeling flu-ish and exhausted and crabby, getting IBS symptoms, the works.  I had it for 3-4 days and it got better each day and had mostly dissipated by the time I got to the doctor last week.  Then this weekend, I must have over done it again.  Little sleep plus lots of effort reorganizing my room.  Stayed home yesterday to try to sleep and recover, but the achiness continued into today.  Went to work, but the pain was so bad I was crying on and off for 3-4 hours this morning.  So:

I've got an appointment with Group Health's pain clinic -- April 10th;
I've downloaded music that's supposed to enhance delta state sleeping;
I'm keeping a pain journal;
I've canceled my dates for the next three nights;

I'm trying to calm down enough to sleep, but I'm wired from so much activity at home tonight -- helping Penny do homework; playing with Sar; helping pick up a game; helping Tera button and unbutton her jacket; watching the play Penny & Sam made up while the rest of us were finishing dinner; mining the ITunes store for songs with the kids' names in the title (we were especially delighted that there is a group called the Elessar Trio doing Latin music!); trying to get Sar settled.  Home was good tonight...and things still hurt.

Sar is waiting for me now to finish this and cuddle him down to sleep.

One last good note from today:  Mike gave me a ride home.  When he heard how bad I was hurting, he offered to pick me up & he arrived right at 5 with a bunch of roses for me on the front seat.   And he made me laugh during the right home.

So it wasn't a bad day.  Just a painful one.

( a post of complaint )
And I paid $115 today for accumulated co-pays from the last month.  That's $115 I had to borrow from my bank to pay my healthcare provider.  Suck.  Sucky suck.  Suck.

One of the worst things about being a temp is that you're perpetually on a first date.  This is lovely if the match is good and you've been taking your happy pills and you've just had a great haircut and all is right with the world.  But:  say you show up to work the first day and your allergies are acting up and your nose is running.  From then on, you will be known as the Sniffly Temp, and there is never enough time to say "Oh hey, yeah, I ran out of Claritin D, but I don't always sniffle like this."

In my old job at Women Studies, I was occasionally out of sorts, but mostly I was known as cheerful, warm and welcoming.  Even when I was depressed or people thought I seemed out of it or sad, no one took it personally or assumed it was because of them or what they asked me to do.  They had enough experience with me to know that, in general, I put a lot of effort into my work and was dedicated to what we are doing.  Here, however, I fear I am known as the Disgruntled Temp, and that it is stamped across my forehead so that no matter how cheerful I act, everyone is going to think I'm faking it -- because  i am faking it.

So yeah, I'm not giving good first date here.  I feel like I'm out on a blind date with a guy named Fred.  We're at a football stadium and it's first quarter and he's already drunk or well on his way to it.  I'm freezing my ass off, my boots are too small, his friends are leering at me and cracking jokes about the size of my breasts and I'm supposed to be charming about all this?  

My complaints are metaphorical of course.  My real complaint is that the work is physically exhausting and repetitive and causes all my fibromyalgia symptoms to flare up.  That us, erasing lines causes my thumb to ache and my wrist to swell and by the time I'm into the afternoon my entire body feels like it's on fire from the inside.  But: you don't talk about pain or illness on a temp job the way you don't talk about politics on a first date.  Especially not if you have a condition that other people don't think exists.  Dropping the word "fibromyalgia" in the workplace would be like declaring my feminism to Fred.  The end of the date.

So today, onward and upward.  Working on correcting a bad first impression.  Trying to use my left hand as much as possible and adjusting my chair every half hour.  Popping the ibuprofen.  And calling you on my cell phone from the ladies' room just to let you know how awful this date is.  Thanks for listening.