Tag Archives: health

Tired

I wake up to throbbing, burning pain.  I’m stiff when I wake up; every joint feels swollen, every limb feels made of lead, and I’m not always steady on my feet.  I fumble for my cane, put on my bifocals, grab my water bottle and cell phone.  I try to carry as much as I can when I head upstairs since I don’t care to make multiple trips.  Heading up the stairs, I wonder if my legs will obey me and if I can avoid near-syncope.  One of my greatest fears is fainting while I’m on the staircase.  I lose my footing on the stairs often enough as it is. . .

I coffee up, trying to chase away the mental cobwebs that are never fully gone.  I take muscle relaxants, arthritis pills, pain meds.  I chase my three young children around the house, cleaning up their various shenanigans.  I wince every time I lift my 2-year-old onto the changing table.  I can’t lift my arms above my head without excruciating pain.  Come to think of it, I can’t do much of anything without wanting to cry.

I have fibromyalgia and a suspected autoimmune disease.  I’m weak, I tire easily, I’m light/sun-sensitive, and I am always in pain.  If I had to pinpoint its origin, it’s as though there’s a layer between muscle and bone, and that layer constantly feels like it’s on fire.

Sometimes it feels as though people don’t believe my pain exists.  Maybe it’s because they can’t see the problem, or that they just can’t understand the kind of chronic pain I have.  Truth is, sometimes I think I’m just crazy.  If I hadn’t seen the blood test results myself, many times, I might wonder too if what I have is really real.  I’m waiting on more blood tests to come back to see if they can pinpoint what makes me like this.

I fight so hard, take so many measures, take so many pills, just to feel the tiniest bit of relief.  When I do feel better, I often break down sobbing because it’s depressing to fight this hard to still feel so shitty, and think that that’s the best I can hope for most days.  There are more things I can’t do than I can, especially with my kids, and it makes me feel broken.  I feel broken, disabled, less than, unfixable.  I might feel better if I had a diagnosis, if I could point at something and say, “THIS is what’s wrong with me.”  Not knowing makes things worse.

I worry that I’m a burden: to my husband, for having someone so broken to take care of, that I can’t do more; to my children, like I’m cheating them out of having the kind of mother they deserve; even to my doctors, for being so difficult to diagnose.

I’ve seen a neurologist, who felt that my neurological symptoms are secondary to an underlying condition.  I’ve been to a rheumatologist, who believes my underlying condition is most probably an autoimmune disease, but doesn’t know which one.  My urologist, gynecologist, dermatologist, ophthalmologist, internist, and primary feel the same way.  Now, I’ve been referred to another rheumatologist.  If he comes to a dead-end with me too, I’ll be referred out of state.

For the most part, they’ve all said that one of two things could happen: I could get miraculously better, which they all agree is unlikely, or I could get worse enough for something to show up in my blood tests.  This leaves me praying every day that I either get the most unlikely miracle of good health, or that I get worse enough and raise the right antibodies to nail down which disease I have.  In the meantime, I bear the burden of depression, anxiety, panic attacks, insomnia, and constant, disabling, debilitating pain.

I know there are people who have conditions worse than mine, and I don’t want to take anything away from their own ordeals.  I write this because I need an outlet, because people have asked me to share, because it’s one of the only things I can still do.

Many of you are tired of hearing me complain.  Trust me when I say I’m more tired of it than you are.

Suckage

This past month has been medically miserable. Unexplained autoimmune condition persists, and is actually worse but still undiagnosed.

IUD tore itself out after 10 days, then my uterus got infected. I spent Friday night hanging out in the ER, and am starting to mend (with the aid of a lot of antibiotics and pain pills). General ouchiness.

Then yesterday i had a fun episode of near-syncope, caught myself on the kitchen counter, won myself a trip to urgent care. Now I get to wear a thumb/wrist brace.

Today, I got a crapload of meds. I am a walking pharmacopeia! Better living through chemistry, I suppose.

Ugh.

I’m ready to cry. I’m about at my breaking point. All the docs I’ve seen so far are sure that I have a primary autoimmune disease with lots of secondary problems that make my life miserable. Many of them have said they think it’s SLE or something that mimics MS, but are deferring to rheumatologist’s ruling. I got my lab results & saw the rheumy today, but walked away empty-handed. He said that, while I have a lot of SLE indicators, apparently I don’t have enough (yet?). He said I could start feeling better (not likely, he admitted) or I’ll get worse and the numbers will reflect it. Either way, no course of treatment for today except to continue the inadequate pain meds, and no new treatments until I’m decidedly worse. I’m so frustrated, because I already feel like shit on a stick, and now this either has to become my new “normal” or I can pray I get worse and that whatever I have progresses quickly enough to be measurable. Great choices.

Whoa.

Holy absentee blogger, Batman!

I’ve sort of been writing.  Elsewhere.  Stuff more for me and less for public consumption.  I just haven’t been writing enough, which is likely why I feel… congested? emotionally.  Time for a cathartic dump.

I’ve been exhausted, aching, and/or ill, for what seems like for.ev.er.  I have depression/anxiety/panic issues, and fibromyalgia, and chronic back pain from an ancient injury.  Those are all the basics that are with me on an almost daily basis.  I’ve had in increase in migraines (complete with aura, awesome), a resurgence of insomnia, an uptick in panic attack intensity and frequency, and some unexplained diffuse lymphadenopathy which hit me like a freight train.  And this has all just been my shit.  Each of the kids has had their own (typical, uneventful, unremarkable, viral) illness, and John has had his fair share of ickies.

So through all this shit, a lot of things have taken a back burner.  This blog was one.  My spinning.  My painting.  My knitting too, on occasion. Reading, some writing, most frivolous/fun things.

I’ve spent more time primping and preening.  I figure if I feel like absolute shit, I will at least look good.  Hot, even.

I listen to more music than before. [Side note: each of the kids has a distinct musical preference. JR = bluegrass/jam bands, classic rock. Mia = ’80s hair, metal, industrial.  River = r&b and hip hop.  These are usually incompatible genres, often leading to musical chaos and at least one disappointed child.  Thank goodness for Pandora.]

I text more, play Words with Friends, nurse an ever-teething baby.

River’s not really a baby anymore.  He’s 26+ lbs of adventure, charm, and mischief.  He turned ONE YEAR OLD on July 3.  My Itty Bitty Baby Boy is ONE.  It’s amazing, and kind of heartbreaking.  (He got cake.  He loved it.  He took his first steps just days before that.)

I’ve reconnected with some really great people.  My friends and my music have really gotten me through some crappy times these last few months.  Thank you.

My lymph nodes are all starting to calm down, finally.  My spleen still hurts, but it too is on the mend.  I have medication for the panic attacks and insomnia.  Now that I’m getting at least 4 hours of sleep a night and am in less pain, I’m starting to feel like things are looking up.

Maybe I’ll get over this mental block I have about sharing certain things and y’all might see some more posts.

Pictures soon, promise!

Random on a Tuesday

  • My youngest sister, Melinda, died at 25 on January 14, 2011.
  • We drove to Anchorage for a small memorial service for her, held on Friday, January 21, 2011.
  • It’s got me mourning my mother all over again.
  • The kids got to play with Grandpa, cousins Faith, Caleb, and Vicky, Aunts Jessie, Tasha, & Sandee, and Uncle Darrell.
  • We took family photos at my parents’ house, courtesy of Sandee Rice Photography.
  • Back at the hotel, we took the kids down to the swimming pool.  They had a blast.
  • The chlorine in the pool did crazy tightening things to the dreads forming at the back of my head.
  • Bouncing Bears is the coolest place to get kids worn out before a long road trip.
  • The living room floor is the greatest place to roll around after many long hours cooped up in car seats.
  • The wolf and the orca share the same animal spirit in Yup’ik lore.  These are the two animals I debated between in trying to identify the animal essence of my youngest child River.  JR is a polar bear.  Camilla is a lynx/mountain lion/fox.
  • I’ve spun 4 oz of a pinkish-purplish wool/alpaca batt by Bohoknitterchic Spins into 400+ yards of a fingering weight single.  Melinda loved pink.  I’m going to knit a shawl out of this yarn.
  • I’m knee-deep in laundry that needs to be done before we leave Thursday night on vacation.
  • I get a kitten after we get back.  It will go nicely with the litter box and cat food I got from John for Christmas.
  • I’m planning on getting tattooed in San Antonio and Chicago during the next couple of weeks.
  • I’ll be starting a Little Acorn Learning curriculum for JR and Camilla after our trip.  I’m excited.
  • I definitely need to get back to daily workouts.  They’ve fallen by the wayside with a marked increase in fibro pain.
  • I nearly forgot how comfortable Vans are until I bought a new pair the other day.
  • I am very clearly doing anything possible to avoid laundry and packing.
  • I have to start all that now, before Thursday gets here.

Sigh.

New.

(I’ll be back with 30 Days of Truth tomorrow-ish.  Just wanted to note this.  Workout: Complete, 20 minutes.  30 Day Shred 1, day 3 in.a.row!  Liking the burn I’m feeling.)

My guys (John and JR) got a much-needed haircut by me tonight, followed by showery freshness.  River practiced keeping his balance sitting up.  John went to bed in hopes of chasing away his chest cold.  Camilla fell asleep on the early side.  JR, River, and I hung out in the living room before they decided to go to sleep before midnight.

I thought about mama, and how we would call each other at midnight each new year, just to check in with each other.  I miss you, mama.  I thought about new year’s eves of past, shook my head, and said a prayer of thanks for my life today.  Sleep eluded me, so I came back out to the living room to do my workout as nearby fireworks rang in the new year.

New.  New goals.  New outlook.  New habits.  New hope.  This year, I’m going to reveal a new me.

Happy New Year.  May you find the newness you seek.

Day 6 of 30 Days of Truth

Day 6:  Something you hope to never do in your life

Workout:  Complete, 30 minutes (30 Day Shred Jump Start, 30 Day Shred 1 — feeling major burn today)

First of all, I am sore.   S.O.R.E.  I didn’t know that just 20 minutes of working out could be so intense.  Yesterday was my first day of the 30 Day Shred program, and it kicked my ass.  Everything was sore this morning.  On the other hand, I slept like a baby last night, deeply, completely, all night.  And it was the first night in a while without nightmares (at least, where I don’t remember having them the next morning).  So bonus all around.

Second of all, I’m down over 6 lbs, and can feel that more is going to come off if I stick with this.

Thirdly, Jillian is crazy.  Her 30 Day Shred is intense, she’s intense, but that’s ok.  I need intense, I think.  She’s bossy, and that works for me.  But she’s crazy.  And my ass hurts.

Moving on.

There are tons of things I hope to never do in my life, just as there are tons of things I hope to do.  I’ll try not to be specific as I don’t want to bring myself down or increase my anxiety since I already have depression and panic/anxiety issues.  I will say, in light of the dietary shifts and increase in workout frequency, that I have a weight number in mind that I hope to never again reach.  I have another number in mind that I’m working toward, but am trying to focus more on increasing my sense of well-being.

Now excuse me while I go collapse for a while.  Whew.

Day 4 of 30 Days of Truth

Day 4:  Something you have to forgive someone else for

Workout:  Complete, 20 minutes   (Cardio Slimdown by Leslie Sansone, Exercise TV On Demand)

The 30 Days of Truth blogging project took a backburner while I got over a bad fall down the last third of my hardwood stairs.  Easing back into it with a 20-minute segment today; didn’t realize how much I’d missed it until now.

Today’s topic: forgiveness.  I don’t forgive easily.  This could be because I generally assume that individuals are essentially good and trustworthy people.  Once I’m crossed (and it takes a bit of effort), that’s pretty much it for me.  (Admittedly, this threshold of tolerance is lower when dealing with people in customer service roles.  It’s one of my flaws.)  I don’t forgive easily.  I can hold a grudge until the cows come home, and I’ve moved enough times that I’m not sure if the cows could find me anymore.

The slights I can think of are either understandable (falling within my general life view) or forgotten-yet-unforgiven.  Sort of that whole idea of “I was mad about something, and I must have had a good reason.”  There are a handful of things that are unforgivable, no matter what.  Some of you who know what they are can probably understand why they’re unforgivable.  The rest of you probably don’t know for a reason.

Hatred that I’ve harbored over the years has mellowed into a comfortable indifference, settling into a lovely disregard.  I’m good with it, so I’ll leave it be.

30 Days of Truth

I read about this blog meme on someone else’s blog, and have decided to give it a go.  This will help “train” me to blog more often, as I’ve been meaning to, and since I’m not going to let myself do this until I’ve done my home workout for the day, this will also help me burn calories, too.

Day 1:   Something you hate about yourself
Day 2:  Something you love about yourself
Day 3:  Something you have to forgive yourself for
Day 4:  Something you have to forgive someone else for
Day 5:  Something you hope to do in your life
Day 6:  Something you hope you never have to do
Day 7:  Someone who has made your life worth living
Day 8:  Someone who has made your life hell or treated you badly
Day 9:  Someone you didn’t want to let go, but who drifted
Day 10:  Someone you need to let go, or wish you didn’t know
Day 11:   Something people seem to compliment you the most on
Day 12:   Something you never get compliments on
Day 13:   A band or artist that has gotten you through some tough times
Day 14:   A hero that has let you down
Day 15:   Something or someone you couldn’t live without
Day 16:   Something or something you could definitely live without
Day 17:   A book you’ve read that changed your view on something
Day 18:   Your views on gay marriage
Day 19:   What is your opinion of religion?
Day 20:   Your views on drugs and alcohol.
Day 21:   (Scenario) Your best friend is in a car accident and you got into a fight a couple of hours before. What do you do?
Day 22:   Something you wish you hadn’t done in your life
Day 23:   Something you wish you had done in your life
Day 24:   Make a playlist to someone and explain why you chose those songs
Day 25:   The reason you believe you’re still alive today
Day 26:   Have you ever thought about giving up on life?
Day 27:   What’s the best thing you’ve got going for you right now?
Day 28:   What would you do if you got pregnant (or got someone pregnant) right now?
Day 29:   Something you hope to change about yourself
Day 30:   A letter to yourself

Awesome & Win

The nurse-in last Friday was made of awesome and win.  Thank you all.

I was so proud of the turnout — a photographer from the local newspaper pegged us at over 20+ mamas strong, not including daddies and babies and other supporters.  KUAC-FM mentioned us during the 12 pm newshour before the event.  CBS News 13 interviewed me before the nurse-in, and we were featured in the 6 pm and 11 pm news that night.  Two photos from the event were featured on the front page of the Fairbanks Newsminer the next day.

The energy from the participants was amazing, and the sentiments from passersby seemed largely positive despite a couple of unfortunate encounters.  The media was initially kicked out of the store, but were later invited back in.  John and I guessed that they didn’t want any more bad publicity.

We were there for about an hour inside the store, nursing, visiting with other parents, reveling in the positivity, enjoying the moment.  We had sort of descended on Starbucks en masse, and they were so patient even though I’m sure they were a bit overwhelmed.  The clerk nearest to us was very pleasant and polite.  Management stood by, looking rather nervous or insecure, possibly both.

I’m still so excited that it all went so well.  Overall it was such a wonderful experience.

Click images to enlarge


I’m so proud of the nurse-in, and of all of you out there who came out to support us, or sent your support from wherever you are.

I had mentioned to a few people how I’ve been wanting to expand my social circle, to meet like-minded people to hang out with and have playdates with, and one fabulous mama put it in an  awesome, empowering way:  I manifested a community around me, I manifested friends.  I guess I truly do have powerful magic.  I know I’m blessed to have had the support that I did, that I do.

What a great time it was.  I’m so hopeful that I’ve helped spread the message that there is nothing indecent about breastfeeding, and even more hopeful that at least one more mama will feel comfortable feeding her baby whenever and wherever he’s hungry.

At the nurse-in. Photo by Georganne Hampton, cropped by me.

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