Category Archives: health

Hallooo…

Crap. It’s been forever since I updated this thing.

We took a trip to TX in late June/early July. Went to my in-laws’ 50th anniversary party, saw J’s side of the family, got some vitamin D. Loads of fun.

After flying back to Alaska, we had an interesting time getting back home. Flew into Anchorage, landed late at night, drove all night toward Fairbanks, arriving at Nenana sometime after 7 am. Couldn’t go any further since a wild fire had blocked the highway. Backtracked an hour or two, took a gravel road connecting the Parks Highway to the Richardson Highway, got a flat tire about 70 miles in. We only had one spare on us, no cell service, no sleep, and just a few bottles of water and some junk food. Amazingly, a few miles after changing the tire, we came across a lodge/tire repair stop. Got a room, got the tire patched, ate, slept, and resumed the journey the next morning. Another 40-ish miles and we were on the Rich, then another two-ish hours and we were finally back home. All in all, it took about 60 hours to get home from Texas.

I lost the rest of July and most of August due to some fun medication complications. JR started 1st grade at the end of August, turned 7 in September, and can now read, write, add, and tie his shoes. He’s such an amazing big boy.

J has had a couple of back operations (to repair a bulging disc) and is recovering slowly but well enough. I’ve had a lot of doctor appointments in my bid to finally find a diagnosis, as well as dealing with part of my Social Security disability appeal. Little to no progress has been made on either front.

Autumn is here, brightening my mood since it’s my favorite season. The kids discovered the simple fascination of a Coleman lantern last night in the backyard. JR very much wants to go camping, though I know that he’d be freezing and unable to last the night through if we actually did it. Next summer.

I got to see Bill Maher and Dave Chappelle when they came up here, got to visit briefly with my dad once, and meet some new people. Also have some new furniture — two new couches, and a matching coffee table/end tables set. Looking forward to rearranging the rest of the house when I have a good day or two; I plan on bringing up a twin bed from downstairs to put in a now-vacant upstairs bedroom, moving a dresser and some shelving units, and changing around various wall hangings. Eventually, I’ll get my china cabinet and antique sewing table from my parents’ house in Anchorage. When it’s all done, home will feel much homier.

Lately, I’ve been sucked into books, predominantly 18th and 19th century lit. I’ve done some writing again, and touched up some paintings. I have lots of ideas for new paintings, and hope to actualize them soon. I’ve also been making some hand-knits for this coming winter.

Ultimately, I just felt like it was time I posted something to say, “Hi. I’m still alive.”

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Got spoons?

Many of y’all have asked me before, “What the hell are you talking about when you say you’re running out of spoons?” This article should help explain things for you in ways I can’t.

I have an undiagnosed autoimmune disease & fibromyalgia. Everyday is like this.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Here’s a PDF download of “The Spoon Theory.” http://db.tt/HhtWtiod

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“Happy Birthday” Manicures!

Today is my 34th birthday. Tomorrow is Camilla’s 4th birthday. We got Mama and Mia manicures at Hair, Body & Sol today. We had the GREATEST time.

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This just became “our” thing.  I have already been told we are going to do this for our next birthday.  Mia had the best time talking a mile a minute to the wonderful ladies at Hair, Body & Sol, and picking out the colors she wanted (she wound up with a bright pink base with a warm purple shatter top coat).  She asked what everything was, at least once.  She asked for water.  She said she needed her hair moved out of her eyes.  She asked for a fan so her nails could dry faster.  She asked to get her feet done, too, but that was not on the schedule for today.  Camilla definitely has diva in her blood; it’s good to see that my girl knows what she likes and isn’t afraid to ask for it.  😀

This birthday diva was pretty damn happy with the whole thing.  I love that I’m making such happy memories with her, and setting up a fun new tradition.  I loved my manicure, and I’m certainly eager to go back for more services.  Happy birthday to us!

Blue skies

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Feeling them inside, too. At least a little bit. But for the first time in a grip, for sure.

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.

Randomly on a Tuesday

I like Random Tuesdays.  Because they’re random.  Like me.

I’ve been in contact with one man I suspected of being my biological father.  His name isn’t quite the right match, but his age is, as well as his location at the time of my conception.

I’ve found a few other potential bio-dads.  One was a definite ‘no’, one was deceased, and one looks like me.  The one that looks like me lives in Lugoff, South Carolina.  He hasn’t responded to me yet.  Good thing I’m persistent.

My cousin Stephan committed suicide last week at age 26.  He left behind three young sons, and a lot of loving family and friends.  We drove to Anchorage last Friday for his memorial service, but didn’t quite make it.  We stopped for brunch at Rose’s Cafe in Healy, where Mia fell on her front teeth.  She bled a bit, chipping one top front tooth and loosening the other.  We debated whether we should continue to Anchorage or turn back to Fairbanks, and decided to keep on.  We hit up Alaska Native Medical Center as soon as we got to town, and good thing.  Poor Mia had fractured both top front teeth down to the nerve, and they had to be pulled.  She’s fine now, though she pronounces a few things differently, and won’t have any lasting damage to her adult teeth or rampant love of running.

We stopped at Stephan’s wake, where the place was teeming with my extended family and lots of good food.  I saw family members I haven’t seen in years, and learned that a couple of them live up my way.  We were all exhausted from the trip down so we didn’t stay long, but I was there just long enough to give my love and sympathy to Stephan’s mother, Aucha.  My most beautiful, smartest cousin, just like me.  May G-d bless you and keep you.

The kids got to hang out with a few of their cousins, Faith, Caleb, and Victoria, as well as Aunt Jessie and Grandpa.  Mia was completely captivated by all the mountains around Anchorage, poor little mountain-deprived Interior girl that she is.  We were going to take them to Beluga Point before we left town Saturday, but opted instead to take them to Valley of the Moon Park.

That’s where I got to finally catch up with an old friend, Amanda, and finally met her beau Todd and adorable son Mason.  River had fun on the swings, JR climbed on everything in sight (and has declared it his favorite park), and Mia was so taken by Amanda and Mason that she kept talking about them on the way home.  There are many, many more friends I want to see; I’ll be back in Anchorage before too long!

It was fantastic to come home after such a short trip.  My home stays messier than I want it to be, but it’s mine.  Mine, mine, mine!  The animals gave us a great greeting, as has the laundry pile.

John has a new-to-him motorcycle this summer — a 1991 Harley Davidson Sportster.  He got it late in the season, got it fixed up, and takes it out whenever he gets a chance.  I keep pushing for him to get chaps, but possibly not for the reason he wants them.  I picked up a helmet this weekend, so I’m ready just in case I get a chance to ride with him.  Hopefully he can take a long ride this coming weekend since there probably aren’t a lot of riding days left.

I’m still knitting — I have a lot of finished projects that I haven’t pictured because the kids got hold of my camera, leaving me unable to point-and-shoot at my leisure.  That’s also why there are decidedly fewer photos here on the blog.  I have a lot of knitting projects lined up, including a shawl for Amanda (because she admired the ruffly one I was wearing at the park), hats/scarves/mittens for the kids, hats for the nursery at Fairbanks Memorial, items for the upcoming homeless youth shelter, and items for various auctions like the Toys for Tots one held in Anchorage.

I’ve been reliving some drama from 15 years ago in my dreams several nights in a row.  Rather, I should call them nightmares, more appropriately.  I’m pretty much ready for that to stop.  Though last night I dreamed I was the star in a recital, and had all manner of dance training to undergo before the big show.  It was strange.

I’ve been reading about Kabbalah, Jewish mysticism, tarot, and the Torah.  When I’m not reading about spirituality, I’ve been lost in Kathy Reichs books with Margaret Atwood bringing up the rear.

My cholesterol has come down over 50 points, possibly 70, since the beginning of the year, and I’m thrilled about that.  I wasn’t sure if my approach was working.  It’s still not great, but I’m getting there.

Fibromyalgia pain comes and goes.  I feel like I’m finally on the tail end of a flare.  If I hadn’t had two root canals that need to be retouched, I’d probably feel pretty good.

I’m going to scrounge up some dinner now, then hopefully finish a sock I’ve been working on for what feels like forever.

Protected: Letter to my biological father

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Daddy dearest…

…or not.

I was adopted at birth by my biological great aunt, Rose, and her husband, Charlie.  I had a good life with them.  A better life than Joanne would have been able to give me.  I’m grateful to her for loving me enough to give me away.

I knew her growing up, but I knew her as my cousin.  I remember feeling connected to her, and seeing her at all the major holidays & family events.  She was there for every birthday.  She was married, had three kids, separated, then dead.  She died of liver failure, having drank herself to death at the age of 30.  I sobbed uncontrollably, and surprisingly, at her funeral.  I was inconsolable and couldn’t figure out why.  Mama and Daddy finally told me the truth about my parentage when I was 13 & 14.

Mama was the best mother I could have asked for.  We were close.  It’s been a little over three years since she died of heart failure, and I miss her immensely.  Daddy was a good provider.  We never had the best relationship, but we’ve definitely made great improvements to that since I married and had kids of my own.

I sought out my biological father, RN, once, several years back.  I corresponded with the man I suspected of DNA contribution.  He was married, with kids, and didn’t want to jeopardize his family life by introducing an adulterous love chlid, so he didn’t want anything to do with me.

I moved out of town, married, had kids.  I also had/have medical problems.  I want to know my parentage, and their medical histories.  I can’t ask Joanne anymore, though I might be able to get her records with my original birth certificate.  I want to ask RN.  Court records show he has since divorced, among other less pedestrian things.

A friend of mine suggested that I list three things I demand to know of him.  I plan on emailing/messaging him when I have something written out.  I want a medical history.  I want pictures of him.  I want to know what he remembers of Joanne.  I have a million other vague questions, but no idea which ones are most pertinent.  I’m curious about any biological siblings that are out there.  I’m not looking for a relationship with him.  I already have a dad.

How do I phrase such a random, awkward letter to him?

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!

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