42 and 25

October is a strange month in my life. Last week I turned 42 years old and the week before that marked 25 years since my constant headache started and I became chronically ill. I remember brief clips from that time: crying in pain while waiting for my mom to get home from work; listening to my mom unenrolling me from my community college class with tangled feelings of relief and failure; a kind nurse holding my sweaty hand while the doctor performed a lumbar puncture; thinking that surely I'd be better by Thanksgiving, by New Year's, by Senior year. I turned to hand work and old movies, which is when I started quilting and taught myself to knit. An inpatient headache clinic decreased and stabilized the pain enough that I could attend college part time with my friends.

I've been trying to write a second paragraph for days but can't find the right thing to say. As the autoimmune cognitive disfunction worsens it gets harder and harder for me to put thoughts into words. I've made the best life I can given the constraints and difficulties. Pain and illness have changed me in fundamental ways and have pushed me outside the mainstream. I don't have the career or romantic partnership that I assumed I would, nor do I have relatable experiences or anything resembling a normal life. But I'm usually happy and probably enjoy life more than the average person. Above all I try to love others and be kind.

Right now I'm going to be kind to myself and take a nap.

 I climbed a view tower yesterday in memory of an arthritis friend who passed away recently.

Caribbean Vacation! and hard news

I just returned from a week-long sailing vacation in the British Virgin Islands with family and friends who are now family. It was beyond expectations and words cannot convey the amazing time we all had. We snorkeled and talked and ate and played with the kids, and I jumped off the flybridge into moonlit water to swim with bioluminescence. Three times.

My energy level was amazing for most of the trip and I was one of the first into the water every chance. We saw so many fish, I practiced snorkel diving, and my body did so well! The tropics are a fabulous place for me to visit, but heat rash let me know that more northern climates are best long-term! The travel days, especially the flights, were exhausting and tremendously painful but I knew that going in.

The trip wasn't all positives, though. Seeing the scale of hurricane damage up close proved the consequences of how greatly humanity is changing the climate. My cousin and her young family were on the trip; her husband was our captain. The last full day we learned that their home in Redding, Ca, was destroyed by the Carr Fire. There were some tears shed and shock all around, but also tremendous gratitude that they didn't live through that nightmare. They're now making big decisions about their future on an increasingly risky planet.

Let's Talk About Pain

I'm always in pain; it's a fact of my life. Yet I almost never talk about it. Pain is not relatable, pain is unquantifiable, pain is invisible, and pain is personal. With the war on opioids, pain is also political.

The amount of daily pain I experience is unimaginable to the average person. Yet I'm so used to it that I forget how abnormal it is. The Mankoski scale is a good gauge with caveats: 22 years of constant pain mean my brain and lifestyle have adapted. And pain meds (please don't call them painkillers) don't work on my pain.

Mankoski Pain Scale: 

6 – Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.

7 – Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.

8 – Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 – Unable to speak. Crying out or moaning uncontrollably – near delirium.

If you saw me out and about you'd likely peg me at a 6. My pain is almost never 6. 7-8 is typical. It took me a few years to train myself not to make "pain face." Sleep is always a problem. I often have times when language and cognition* are difficult as a direct result of my pain level. Sudden spikes in pain will knock me back a step or cause grunts or groans.

I cope: I sleep when I can and as much as I can. I distract with music, tv, socializing online, getting out in the world, hanging out with friends. I bounce by attention around online to increase the distraction. When it's really bad I have a drink or two, vape marijuana, or sleep. But alcohol and MJ don't reduce pain, they just make me care less. Other people have their own coping mechanisms because pain and coping are individual.

I've made a good life through a hell of a lot of work. But sometimes I still wonder what it would be like to be pain free. I can't imagine.


*I mistyped cognition, autocorrect fixed it, and I had to stare at the word a couple times before I confirmed that it was the correct word and said what I meant. This is not uncommon.

Boring Medical Updates and a Depressing Poem

This body, man. At least I still have my sense of humor.

I had a Benlysta infusion yesterday so hopefully that kicks in soon. It started wearing off last week and now I feel awful. I'm waiting on a gastro referral. I saw the ophthalmologist today and have new stuff to try on the Angry Eyes. She wants to throw hormone therapy at them (testosterone eyeballs!) but the FDA hasn't approved it. So it's antibiotics and steroid drops instead.

I'm taking the rest of the week off from my medical stuff. I need a break.


As promised, a poem:

Why do you think I am well?
Because you don't see joint pain sparking and incandescent behind my eyes.
Because I hide the animal, all tooth and claw, fighting in my abdomen.
Because I smile despite the nails in my jaw,
move against the lead in my blood,
speak through sleepless nights and long lonely days.

Illness petrifies my life but
you see familiar silhouettes and are satisfied.

She is well.

#PainRealityDay Sept 9

The first annual Pain Reality Day is this Wed, Sept 7.  It will show the everyday realities of chronic pain and illness.  "Open up the world to a typical day in a life lived in pain using fave social media apps." (fb event page)

I will be live tweeting my day.  You are welcome to follow along on Twitter @seaquirky.

Product Review: Arthritis Compression Gloves

Two challengers enter the ring: Imak arthritis gloves in gray, Isotoner compression gloves in beige.  As our opponents go head to head they reveal their strengths and weaknesses.  Let's get ready to rumble!

Imak:

Imak's compression gloves, which they call arthritis gloves, are made from a cotton/spandex blend that's comfortable even in summer.  The dark gray color allows them to be worn somewhat incognito.  They have more of a tendency to stretch out between washes than the Isotoner.  My first two pair were size S but recently I tried the XS and prefer them.

My main quibble with the Imak is the shortness of the fingers: I don't pull them completely onto my palm in order for the fingers reach to my second PIP joint.  I also had the seaming on one glove's finger start to unravel, but I quickly resewed it with needle and thread.

Isotoner:

These are definitely the ugly support hose of compression gloves.  However, these nylon/spandex gloves work very well and are practically indestructible.  They are worn with the seams on the outside, something I now do with all my compression gloves.  I started with a size M but will next try the S.

Isotoner are my glove of choice in winter since they keep my hands warm even on cold nights.  The fingers are a bit longer than the Imak, a big plus.  They are easier to remove, nice when pinching the fingertips off is difficult of a morning.  They also dry quickly, I can wash them mid day and still have them dry to wear that night.


*I hand wash and hang dry all my compression gloves: it's quick, especially if I throw them on the floor of the shower with me.  And they last much longer.

Sizing:
I started out wearing the size recommended by the manufacturer.  As my joint swelling and pain has progressed, however, I prefer one size smaller.  I found that fitting has more to do with the circumference of the fingers and less to do with palm width.  It can be harder to find the smaller sizes but worth a look.

I hope some people find this helpful.  Do you have any experiences with compression gloves you'd like to share?  Please leave a comment :)

What I've Been Thinking About (God talk)

I made myself some tasty coffee, the kind my grandma would hate (almost syrupy-thick and black, sweetened with sugar, brewed in a Moka pot), and I felt like catching up.  I haven't written for a while because fatigue has been kicking my ass.  I've taken a couple trips out of town this spring, but day-to-day it's taking care of this sick body, passing time, and not much else.  Being chronically ill takes a stupid amount of time and energy.

The last year or so I've been thinking about God and religion.  I have almost no direct experience with religions other than Christianity, so that's the stake around which my thoughts graze.  I do believe in God and Jesus, and I'm fully aware that this is a choice I've made and others have made different choices.  I've had some bad experiences with churches and people, but since that's not enough reason for me to write off people I also decided not to write off organized religion.  However, getting to church is very difficult for me, as is sitting and paying attention for an hour plus, much less both in one morning.  So I haven't been doing that.

Uh oh, now the caffeine's really kicking in and I'm jittery.

Illness does this interesting thing when it steals your energy: it forces you to distill life down to what's essential.  Part of this simplification means that I don't spend a lot of time thinking about hypotheticals.  If God wanted me to spend my days doing and thinking about all kinds of God-stuff, I'd be not sick and actually have the energy for that (or so goes my reasoning).  Instead I think about my basic needs and ways to cope with pain, fatigue, frustration and loneliness.  But most of what I read about spiritual life focuses on spending so much time thinking about God and what God wants, or what we think God wants, or what we think God might want us to want.  I do almost none of that.  BUT, since everybody else is focused on God as micromanager, I don't get messages of "hey, what you're doing is different but I still think it's just fine."  I'd maybe worry about this more except I don't have energy for that.  So shrug.

I do like angry Jesus, though.  Having seen things from the "widows and orphans" side, I like the Jesus who throws tables over in the temple or eats sabbath bread while giving a "what are you gonna do about it?" look.  At least that's how I imagine him.  He's also the guy who got nailed to a beam and left on a hill, and I can related to that kind of pain and loneliness.

Sometimes I play a mental game where I calculate the total amount of pain in various scenarios.  You take Value of pain (V) x Length of pain (L) = Total pain (T).  Being eaten by a bear would be hideously painful but short, so might actually be preferable to being eaten by cancer over the course of years.  Short illness also doesn't steal parts of who you are the way chronic illness does.  But acute pain has the disadvantage that you're not able to adjust to the pain, unlike chronic pain.  Over the years vast tracts of real estate in my brain have switched from thinking to not thinking about pain.  It has the benefit of keeping me alive and sane, but I'm also dumber than I used to be.  Anyway, that's what I think about during Game of Thrones fight scenes.

I'm not sure where I was going with this, but I'll wrap up anyway.  I try to be the best person I can and listen to that voice that tells me yea or nay (Jiminy Cricket, God, or prefrontal cortex, I don't know).  Part of what makes us human is questioning our thoughts and actions.  If life is building to a final exam I just hope that my best is good enough to pass.

Illness and Grief

Not the most uplifting title, but it does get to the heart of the matter.  Every time my health worsens, I grieve all over again for the things I'm missing.  This process becomes less difficult with repetition, similar to a romantic breakup.  It's never easy, however, and it's always unexpected.

At the end of 2013 and into early 2014 I was doing better, able to get out regularly.  I had hope for the longer term, for the first time in years.  Then the bottom fell out.  I have so much widespread pain that it threatens to subsume me, and the fatigue has me practically homebound.

The fierce amount of mental energy required to cope with the pain is staggering.  Perhaps people without chronic pain don't understand this concept, how many mental resources are marshaled to push the pain below a conscious level.  The pain is still there, of course, but not always at the forefront of my thoughts.  The more pain, the more energy is required to attempt block it out.  The more pain, the less successful this attempt is.  On bad days I can't concentrate enough to watch a movie; I was a National Merit Finalist.

This weekend was the commencement of another round of grieving.  I thought I was doing ok, that I was just too sick to miss life.  Then the longing for meaning, purpose and connection crashed down on me.  Maybe this should be filed away in my journal rather than posted here, but I'd like to help others understand even a little.

Not Much Progress

The trousers are still on hold.  The big scratch on my leg is mostly healed at least.  Knitting has been slow since arthritis made a comeback.  It turns out the medication I was on that made me nauseous much of the time was actually helping, I realized after stopping it, so I started taking it again.  Only to get twitchy, jittery, fatigued and just feeling off.  My doctor kind of shrugged her shoulders and suggested I taper up more slowly.  Hopefully I can tolerate it again since it really did help the arthritis pain and swelling.  I was hoping it would make me feel better, not just keep things from getting worse, though.

I have a lace shawl idea if I can just get my energy level up enough to start working on it.  Lately I just feel like napping most of the time.  At least spring is here and longer days are very welcome!

When Sewing Attacks

Today I was futzing with the recalcitrant trouser's pockets, and pocket facings*.  I pulled on the trousers in yet another try on of yet another adjustment, when I was scratched, nay gouged, by the damn things!  I'm no lightweight: I deal with severe chronic neck, back and jaw pain, constant headaches, and all kind of unfriendly autoimmune stupidness.  But this hurt!  I dutifully went to the sink, after noting that my pocket adjustments hadn't worked, and washed the 3.5"/ 9cm long bloody gash in my leg.

This photo is from 7 hours later, after washing it again just in case.  It is still quite angry with me.  I don't blame it--those trousers are mean!  Shea butter is not a cure-all in this case, sadly.

I do think I've found at least a partial solution to the gaping slant pockets: by adjusting the tension on the pocket vs hip facing I've stopped the pants front layer from pulling and sending the pocket opening flaring upward.  The hip facing (layer against the skin) needs to be at a slightly higher tension than the pocket (in the center, and this whole assembly is more tensioned than the pants front (self explanatory).  This way the upper layer has the least amount of tension while worn, the lower layer the most in case your fashion fabric stretches, and the pocket layer should be completely stable and floating in the middle withtout a care in the world.  Which is where I'd like to be.

I've now basted and removed most of the pins, the trousers are just waiting for daylight and someone brave enough to try them on.  If the pockets still gape badly I'll give them one more chance and then declaring it as good as it gets.  I would consider basting shut the pocket openings but I know I'd be driven slowly mad by having pockets that are entirely inaccessible.  So we're not even going there.

*Those pocket bits that extend all the way to CF that you're told are so important but right now are just a pain in my ass.

Never Ending Pockets

Between Burda and my pain-based congnitive impairment,  I've sewn (and unpicked) at least a dozen wrong pocket seams on these trousers  Last night culminated in a big mistake and needing to recut the hip pieces :(  Thankfully I had enough fabric.

I've switched from Burda's text directions to Simplicity directions with diagrams, and hope that helps.  I'm also stacking pieces together before sewing to reduce errors.  It is immensely frustrating to not be able to trust my brain on a day-to-day basis.  Especially when energy to sew is such a precious thing!

Here is where I left off:

Pocket pieces top, pant fronts under, pattern tracings all around

Waistband pieces: wool outer, organza lining, madras plaid inner waistband.
Front plaid piece becomes fly facing.

I was very frustrated last night.   Today I realized that once I've conquered the pockets it'll be pretty smooth sailing to finish the pants.  The next big step is inserting the fly zip and I have many visual resources for that.  I just hope these I can wear these trousers this late winter/early spring.  I even knit a vest to wear with them.

Morning Routine

Each morning I wake to an alarm, even when I don't need to get up early.  Chronic pain often makes sleep unrestorative, which means I feel more exhausted when I wake then when I go to bed.  This does wear off but not quickly.  My Ella kitty takes the alarm as her signal that I'm ready to get up!  She starts calling to me, or whining, depending how sleepy you are.  Soemtimes she'll snuggle with me for a snooze or two, other times she's very insistent.

Once I do get up, open the blinds, use the bathroom, brush my teeth, open the other blinds and turn up the heat, she continues letting me know that she's been watiting all night for me.  Only when I finally walk into the kitchen, feed her, and kneel on the floor to pet her does she calm down.  Even though I do the exact same things every morning.  Then I take my meds and plop on the couch to check email and connect with online friends, and she takes up her usual spot on my lap.  And promptly goes back to sleep ;)

Still Here

It's been a difficult autumn and I've been busy dealing with higher pain and everyday life.  More pleasantly I've done a lot of knitting, and even made some sewing progress.  A vest I'm knitting should go nicely with navy blue wool trousers from Burda.  I'm so excited to get sewing again!

I made up a muslin of Simplicity 4366 but it wasn't the style or fit I'd envisioned.  So I traced the Burda pattern, #119 from 04/2010, checked it against the Simplicity muslin, and it looks like a winner.  I just need to do a shorts muslin, treat my wool twill, and sew them up.

Burda #119 04/2010

I started this vest watching the Presidential election returns so it's appropriately titled Election Vest.  It uses cobalt blue wool/mohair with handdyed bluish-purplish wool for contrast.  I worked a 5" wide ribbed waistband in blue, then started a two color pattern called Bricks to show off the handdyed yarn.  Tonight I'm up to the neckline.

  

I hope November is treating everyone well.  I haven't had a chance to post about Wovember, the UK's wool promoting month, but have been wearing wool every day and loving it!

Knitting Mishaps

It's not been the best week here.  I was very excited to finish the cable on the Tangled Yoke sweater.  Then I realized that I'd somehow lost 2 stitches early on in a crucial place, so the entire center back was off center.  The only way to fix it was to rip out most of my work and reknit it.  I considered undoing a portion, enough to add back the stitches, but 1) lots of work and 2) finding the mistake isn't easy.  The sweater is in time out for now.

My hands and arms are very sore from arthritis and I need a new rheumatologist.  This one isn't concerned that osteoarthritis is destroying my hands, my last functional part.  Also my elbows, wrists, toes..  Insurance changes are afoot in the next few months, and then I'll be able to see a couple rheumatologists who specialize in connective tissue disorders, which is me!

Mostly I'm tired, hurting, lonely, and dating has just been another source of unpleasantness.  I'd rather find out the guy turns nasty before meeting, but it still hurts.

Sewing?

I sew when I have more energy, knit when I have less, and I've been knitting a great deal.  I want to sew, I have ideas and fabric for lovely summer tops and dresses, but all the thousand little steps are too much.  I did finish a top, and my machine is still out…but I just don't have it in me to sew.

Instead of thinking about all the things I can't do and really really want to do, I knit.  Even when I have migraines all day for 2 weeks in a row and wish I could sleep through life, I still knit.  When anything I read falls out of my ears, or I'm home alone and lonely, and especially when I hurt too much to think or talk or concentrate on a movie, I knit.

I'm currently mulling knitted lace ideas, so watch this space for designs.  Today I discovered the solution to one idea and will be charting and swatching away.  Plus I started a sweater!

Sewing Fail

I cut out and basted what I hoped would be a new top today, from New Look 6871.  It looks like maternity wear.  You can't tell from the envelope but the back is just as gathered as the front.  The armholes in front gape, due to the yoke and body connecting at the wrong angle.  I may reduce the gathers or turn them into inverted pleats and try again.  I forgot to take photos and it's half disassembled now.  Oops.

I'm disappointed because this took half my afternoon.  I so wanted to make a cute top, or just something!, but doing anything is hard when I'm in so much pain.

Christmas Came Early :p

I saw my Dr yesterday and I have arthritis in both hands and wrists, including a really owie bone spur in my pinkie.  This explains the pain when washing my hands, etc, for about six months now.  It's scary to have more hand pain, and continue losing function.

Also my doc is retiring.  He's seen me every 1-2 months for 16 years.  I hope I'll find a good Dr to continue my care but no one can replace him.  He was my safe place in the medical world and guide to adulthood with chronic pain.  And a kind, caring man.  I will miss him greatly.

No Yarn Harlot for Me; Halloween

She's here in (not quite) Seattle, speaking as I type!  But Thurs is my PT day and I hurt so much after, so no Yarn Harlot for me.  I've been knitting for 17 years and it's always fun to meet other knitters.

I need to figure out a Halloween costume.  I kind of suck at costumes.  The top contender this year is Troll doll.

Halloween 2010, with borrowed hat ;)

The other idea is to wear black pants with a black velvet stripe, black jacquard corset, black top, and accessories.  I have no idea what this would make me but it sounds cool!  Or I could glue a bunch of yarn and socks to myself and be Crazy Knitter Lady--not exactly a stretch, lol

Last year I was a Lady Explorer, complete with riding boots, khaki pants, fancy blouse, vest and giant hat.  It devolved by the end of the evening, hee hee.

Blargh

I am surrounded by idiots.  And I have a migraine, for the eighth day in a row.  But back to the idiots: someone (I hope it's only one person) in my building keeps setting off their smoke alarm and then the whole building's fire alarm.  Which calls the fire department, etc.

As soon as the alarms had stopped I hear some old dude-neighbor yelling down the hall.  He's pissed because someone broke a plate in the hall late Fri night, and he blames the boyfriend of a tenant.  So he decides to stand in his doorway and yell at her.  Wtf?  I talked to her today, she's nice.  We bonded over our mutual dislike of drama.

And I'm still single.  I'm tired of being single, of nobody having time for friends, of being too sick to make plans, tired of all this crap.  Why is half a life too much to ask for?

Invisible Illness Week

I just read this blog post and was thinking about how invisible illness has impacted my relationships.  It's almost impossible to find a man who's willing to even try to cope.  It's always painful, being rejected for something I have no control over.  People basically say "that's too hard for me to contemplate dealing with, so I'm abandoning you to it, alone."  Which is mean and feels even more lonely than when I started.

Nursingcrib.com

I've been having a lot of trouble typing lately: my fingers aren't coordinated with my brain or each other.  Typing has always been harder when I'm in worse pain but not to this degree.  Trying to tease out which of my symptoms are due to pain, or muscle tightness, or ??? is so hard.  Fibromyalgia seems discounted, finally.  I saw a new doctor this week who's actually interested in me, which is huge.  His tender point exam was different from previous ones and avoided tight connective tissue, so I had none of the major diagnostic criteria.  This means that my stupid is either from pain, or something neurological is going on.  Next up I'll try to get tested for Lupus, MS, Lyme, and whatever else my main doc can think of.  I'm trying not to think about more invasive tests, like another EMG.