A Walk in the Woods

I’m 46, I’m fat, I’m sedentary, and I have a gazillion health problems.

For years, I’ve viewed my body as my enemy, or at the very minimum a foreign entity with which I’m saddled against my will.  Not a healthy perspective.  Moving has helped a great deal–I’m not sure how I can explain the connection between my self-concept and my immediate environment, so you’ll just have to take me on faith that the ground I walk on is important to me, as is the view from my window and the smell in the air. Now that I’m surrounded by trees, smelling pine, I’m happier.

But I’m still 46, fat, sedentary, with health problems…and possible more surgery upcoming (but I won’t think about that now, because it may not happen).

For a couple of years, I’ve had the pipe dream that I wanted to hike the Appalachian Trail. Not all 2100 miles of it, certainly not at once, but *part* of it. Even a small part. For someone with my health conditions, as dependent as I am on pharmacology multiple times a day to keep living, that’s a big pipe dream.  Lately, I’ve decided, against all conventional wisdom, that I’ll do it. A hundred miles a year, maybe.  Starting (as we all like milestones) the summer after I turn fifty.

Which gives me four years to slim down, get in shape, try to get rid of some of the medicines I need (or least find ones lightweight and easy to pack…), and learn what I need to learn to not die the first five miles.

I’m very, very excited. Seriously excited.

Aside from just reading books (another blog entry, that one) and looking at maps, I’ve had to start, well, *walking*. Not quite hiking yet (although I have hiking sticks with me), but at least forward motion, not on pavement, for more than a few minutes at a time.  Another good thing about my move is that there are gazillions of hiking trails in my area, not least of which is a series of trails many miles long, of varying difficulty levels, practically out my front door.  Seriously.

I’ve gone out walking a few times now, and this week I set a new goal: I need to get at least a half-hour of exercise in, every five days out of seven, minimum. So far so good.  Aside from walking, I have big plans of joining the golf course here and taking up golf (after twenty-five freaking years), and getting my canoe water-ready and in the Rum River which is a block from my house.

My first few attempts were wonderful disasters.  Wonderful in that I felt awesome and walked and walked and walked and walked–for two hours or more–which left FibroGirl here *wasted* for days and days afterward, barely able to breathe. It feels so good at the time, I don’t feel like stopping.  But I’m learning.  I need to build. (Note: it’s not muscle-pain that slays me–there’s not even a whole lot of that–but absolute exhaustion, mental and physical, that is the fallout in fibro, and the deep, chronic, non-muscle-strain type of pain that is debilitating.)

My short terms goals are simple: by this upcoming autumn, I hope to be able to walk for a day (a few hours, with breaks) with a small pack with lunch, without wiping out my whole week. And lose 50 pounds.

By next summer, I hope to have lost another 50 pounds and by the following autumn, be able to weekend hike to walk-in camp sites, with full pack.

I’ll worry about further goals leading up to the AT (I figure three weeks’ worth at a time, every summer, for that) later.  These first ones, first. And if takes me longer, who cares.  I’m not going to fret about that.  As thruhikers on the AT tend to say, “Hike your own hike.” This is me, doing something for me, on MY damn time.

In order to help me forward with my goals, I plan to blog fairly regularly about my hikes, with photos.  I’ve already made lists of places nearby (within an hour or two of home) to hike on weekends this summer, and I want to keep it interesting.  I want the hikes themselves to be worthy, not just a means to an end. I want to live in the present while I’m preparing for the future.

To begin, some pictures and notes from walks (hikes) already taken this spring, in and around Milaca, MN and Onamia, MN:

Hike #1: March, 2012.

This was the day we discovered the trails just across the road from us.  It was an unseasonably warm day in March, not covered in snow (but only patches) because this spring has been so weird, and we set out to see what was up Riverside Drive across the highway from us.  We found, first of all, a gorgeous, hilly, expansive cemetery, and secondly, paths from it to all over the place.  This particular day we chose to walk down to town via the path over the Rum River, to Rec Park,  then across town to my mother’s nursing home for a visit.

Justin, on the road leading up to what will be new discoveries for us:

Justin, Riverside Drive Milaca, March 11, 2012

Forest Hill Cemetery, MilacaMilaca Trails


Bridge from cemetery to Rec Park, over the Rum River

Hike #2: April, 2012.

We walked up to the cemetery again, but decided to take the paths west from it to see where they went.  There are many categories of trails here…miles and miles of them…but they all start here.  We walked around a slough, through some woods and bogs, to the river, and back again via a stand of pines. We walked for hours, and it was incredibly pleasant. I’d forgotten my walking stick, however, and only grabbed a branch partway through.  Not a mistake I’ll likely make again.

Milaca Trails Map

Discovering new paths!

Rum River


Hike #3: April 23, 2012.

Took the Milaca trails again, but this time on a different route, one that resulted in very up-and-down, hilly, densely wooded trails, and our getting lost, basically, not knowing the way back.  It was hella fun, though, and we did make it back after a couple of hours.  Wiped me out, but was pretty darn worth it!


Off we go! With walking sticks!


Smile! We're walking!



Hike #4: April 24, 2012.

Onamia, MN, is on the Soo Line Trail, a long ATV/bike trail that runs from Genoa, MN (southwest of Onamia) to Superior, Wisconsin, over 114 miles away. Across Highway #169 in Onamia, the the Soo crosses via an immense bridge, and I’d always wanted to walk over it.  S o, we started in the heart of town and followed it out a way, on a warm, sunny afternoon, and returned.  I want to do various sections of this trail, too; preferably in the woods.


Overpass on Highway #169, Onamia



Hike #5: April 28, 2012 (today!).

I had the idea to go to Riverside Park in Milaca and check it out, which we did…but a walking wonderland, it’s not.  Great for picnics, or landing your canoe, and would be fantastic for frisbee.  So, after walking the river as far as we could, we headed back to the Milaca trail system and did the “red” (difficult”) section again, for about an hour.  Lots of up and down, lots of trees, and since today was very cold and overcast, it was, at times, nearly spooky…but that only added to the fun.



Canoe landing, Riverside Park, Milaca MN

Riverside Park

Into the Woods, Milaca Trails


Mushrooms, anyone?


I. Love. Forest. And Justin...


Trestle bridge over the Rum.

I’m Not Really a Hypochondriac; I Only Play One on TV

I often worry I’m a hypochondriac.  Actually, I know I’m not, but I often worry that others will perceive me as a hypochondriac. My medical history is just too weird, too full. This fear wouldn’t mean much…except when it does.

Take, for instance, the fact that since our move in August, my parents’ cat, Muffin, and our cats, Ella, Frodo, Litha, and Wednesday, have been waging a war. Muffin growls when any other cat is in view, the other cat simply is curious and wants to check her out, the fur flies, doors are closed between, and resentment and malcontent reign.  I dislike this conflict, so I counter with daily “kitty integration” time…which often goes very badly. Take last Friday night, fer instance…

It was late.  I was very, very tired. It had been a long, difficult week. I just wanted to sleep.  However, if I closed the bedroom door with just Muffin in with us (as has been the case), the other cats worry at the door and pull up pieces of the very expensive carpet. If I open the door and integrate, I deal with growling and catfights all night. What’s a girl to do?

Our bedroom

I was just going to transition from open-door integration to closed-door house destruction, and Muffin and Frodo–the pair that cause the most trouble as they struggle for alpha–were both under our bed.  Justin and I were both lying on our stomachs next to the bed, attempting negotiations of the feline kind, when I decided that I’d simply move Muffin to on top of the bed and hopefully Frodo, who was showing his belly (i.e. acquiescing to Muffin’s dominance), would simply leave.  I grasped Muffin by the scruff and was gently moving her to a position in which I could pick her up with both hands, and she, accordingly, yowled a bit louder.  Not in pain, but anger. Something we’ve been through a zillion times.

Muffin, sleeping on Justin's pillow

This time, however, the acquiescing Frodo heard or saw something that suddenly snapped his psyche, and in a split-second, literally–as in, I didn’t even see it clearly and didn’t really know what had happened–he turned, leaped at me, and bit my hand, the one around Muffin. Then took off like a bullet, the other three cats hissing and trailing him.

Captain Bitey-Pants

I was stunned…physically and mentally.  Justin took off to save Frodo from the gang fight happening elsewhere, Muffin removed herself to an undisclosed location, and I sat on the floor bleeding, my entire arm hurting, wondering why this felt so different from Frodo’s usually clawing.  (Note: Frodo is a giant cat, part ragdoll, with enormous paws and claws, and uber ginormous fangs; he’s generally a wuss and gentle as can be, but twice, now, in about nine years, we’ve seen him fear for his safety and lash out.  When he does, the lackadaisical cat suddenly becomes the fastest cat on earth.)

When Justin returned, I was still sitting there, bleeding and uncomprehending.  He led me to the bathroom and washed off my hand–we were deciding it was a bite, afterall, and one of the punctures was deep–and went to bed.  We thought that was the end of it.

The next morning, my hand in massive pain, I wrapped it and we went to Justin’s parents to do the fall chores.  My awesome mother-in-law took one look and brought me to the bathroom for a peroxide wash.  My awesome sister-in-law lent me some Thieves’ Oil for the week.  While I was swelling and in pain, I didn’t think much of it.  I was more worried that Frodo had broken a bone, by the way it felt, than any infection.

At the In-Laws' house


By Sunday night, I was beginning to worry.  The deepest puncture was swelling and red, with a very hard lump. My knuckles were appearing again, but very tender.  My hand felt warm to the touch.

I posted on facebook, with a couple of pictures.  I had dozens of good people tell me that I needed to go to the doctor, and soon.  In fact, some of these good people had said so two nights earlier, after the bite occurred.  I should have listened to them!

My normal (right) hand, unbitten, on Sunday night


Bitten hand, Sunday night


Bitten hand, another view, Sunday night

I finally did some research.  I saw pictures that looked amazingly like my hand.  Every site said that I needed medical attention immediately, and that–again–I should have gone in immediately.  But it was Sunday night in Milaca, MN.  The only available medical care would be going to an ER in Princeton or St. Cloud, and that seemed just plain silly.  Go to an ER for a little cat bite.  Phooey.

I went to work on Monday, feeling miserable.  I’d been sick to my stomach since late Sunday night.  My hand hurt. I had a headache. I called for an appointment and got one at 6:00 p.m., because I certainly wasn’t going to leave work.

Yep, you guessed it.  The doctor’s first words when seeing my hand were, “When did this happen?”

“Friday night,” I said.  It was now three days later, remember.

“You needed to be here Friday night,” the doctor said, then proceeded to poke around the lumps and debate whether she should open up my hand or not.

“Okay…I’m not going to send you to the hospital for IV antibiotics just yet…” she said, and I groaned.  “But that doesn’t mean you won’t have to.  For now, start oral antibiotics–amoxycillin–tonight, and if this worsens at all in the next two days, you’re going to the hospital.  And no matter what, you need to come back in a week so we can check for deep tissue and bone damage.”

It’s now Thursday afternoon, and the antibiotics (and Thieves’ Oil) are helping.  A lesser puncture wound swelled up yesterday, concerning me, but it’s been, uh, getting rid of its infectious material, shall we say, and better today.  There’s still a ginormous, ugly, painful mountain beneath the deeper puncture wound, but my knuckles are far less tender and the infected areas seem to be decreasing.  At least they’re not increasing, and there’s been no sign of the infection entering the bloodstream.

My hand, this afternoon (Thursday)


Pretty ugly! This is today's view

The moral of the story (besides “don’t piss off Captain Bitey Pants, aka Frodo) is twofold:

1)  My facebook friends are right.

2)  Don’t let the fear of appearing a hypochondriac stop you from getting needed medical attention.

I recall the autumn I got my diagnosis of Hashimoto’s Hypothyroidism, six or seven years ago. For months, I dragged myself through my day, unable to move properly, in massive pain.  By the time I went in to the doctor, in November, I couldn’t walk the 200 feet from my classroom to the office without resting, and I couldn’t comb my hair. My hair was falling out, I was slurring my speech, and could barely function.  Yet, I’d not missed a day of work.  I thought I’d just gotten lazy over the summer, that my weight gain was my own fault and causing it all.

By the time I went in and got tested, my TSH (normal range 0.3-3.0) was at a whopping 84.75, one of the highest amounts I’ve come across in research. My muscle CPK levels (the stuff that makes your muscles feel tired after a workout) were at 747, at rest…and normal is around 60-80. It was a wonder I wasn’t comatose (myxedema coma is the final stage of hypothyroidism).

It took me two years to get my TSH under control, and years later, I still don’t have it right.  I take more hormonal supplement (the only treatment) than anyone I’ve ever met.  They don’t even make pills with a high enough levothyroxine content; I have to take two pills.

I also recall the time I refused to go in when I had chronic asthma so bad I could barely breathe (and this just months before the Hashi’s diagnosis).  While I’d quit smoking  months earlier, I still felt horribly guilty about it, and pooh-poohed the idea. If my husband hadn’t come home, unexpectedly, from work that day, I’d be dead.  Instead, he found me moments away from losing it and rushed me in; by the time we got to the clinic, I was starting to turn bluish, and my blood pressure was 200/120.  I was gasping and climbing the walls.  I spent five days in the hospital on oxygen, and have taken daily asthma medication ever since (which has worked wonders).

After I had abdominal surgery in 2005 in which I lost a fallopian tube to a torsioned ovarian cyst, I quickly realized that the surgical wound wasn’t healing as expected.  I hobbled around for a couple of days, then called, tentatively, feeling silly.  I was told to wait a day or two and come in, which seemed sensible to me.  The next day, I exploded with staph infection and my husband rushed me to ER; they cleaned me up and sent me home, telling me to check with a doc the next day.  The doc took one look and admitted me to the hospital, where I spent several days on IV antibiotics and the next several weeks doing wound irrigation for infection.

Okay, so I get it. Let them think I’m a hypochrondriac. It’s okay to check to make sure things are going okay. I get it, I get it!

We’ll see…  🙂


My Joy Looks Like Kittens

Twig the Fairy, on Twitter, just tweeted “What does your joy look like today?”

Good question, and timely. I’ve spent what little of the day I’ve been awake for doing unpleasant things. I’ve been trying to get things lined up for the mortgage on the new house despite lousy communication among two different bankers at the same bank (who don’t seem to share information), my father in another town without e-mail, and our realtor (okay, this last has great communication–thanks, Bonnie!). Additionally, the house here is in chaos–more so than usual–because of the packing and boxes everywhere.

And, on top of that, Dad called after his followup visit with the eye doctor a week post-cataract surgery, with bad news: The new lens has partially detached because of his having had shingles in that eye, and the tissue being unhealthy. He’s going to have to go to Minneapolis on Monday to have it redone by another doctor, one who’ll sew the new lens in rather than trust in the tissue to do the work. Aside from the “ewwwww” factor, Dad certainly doesn’t need the stress.  The whole moving thing is keeping him on edge.

So, what does my joy look like?  Angry and confused black scribbling, perhaps?

angry scribble

angry scribble

Perhaps this needs a re-vision.

  • I’m joyful that my Dad is not in pain.
  • I’m joyful that I’m available to take Dad to Minneapolis, despite the fact that he kept apologizing for my having to (apologizing for *what*, I kept saying; he’s my *Dad*…this is what we do, and besides, going on trips with him is fun!)
  • I’m joyful that the house we want and have been dreaming of isn’t yet off the table; it’s just a bit rocky getting there, thus far.
  • I’m joyful that my awesome husband just brought me tunafish sandwiches!

I’m alive, and loved, and while things may be stressful and chaotic right now, my life is that of royalty compared to much of the world, and it seems somewhat shameful to complain about things when I have it so good.  Today, I get to eat my sandwiches, post on a blog, pack some more clothes and books, watch a Twins game, and maybe read a book later, or knit, or go for a walk.

So, today?  My joy looks like this:

Alzheimer’s, a Bloody Thief

My mother has Alzheimer’s disease; she is in about stage 6 (of 7), from what I can tell. She also suffers from spinal stenosis which has limited her ability to stand and walk, so she’s wheelchair bound, as well.  The last few years have been Hell, especially on my father as he’s not only been her spouse of 60-plus years (they’ll celebrate their 65th anniversary this upcoming December), but decider, caregiver, and advocate. Until quite recently, my father–himself nearly 88 years old, now–cared for her at home, alone, including feeding and bathing and bathrooming, as well as taking care of house cleaning, gardening, mowing, snow removal, shopping, bills, and all the tasks that life necessitates.  While she’s spent short periods of time in various nursing home facilities, she’s been home, with Dad, until January of this year, when he finally placed her permanently in a Memory Care unit.

Mom and Dad, circa 1995

Mom and Dad, circa 1995

Then, he promptly got sick himself and nearly died.  Twice.

Dad’s on the road to recovery from kidney and heart failure, but he’ll likely not regain all of what he was before his illnesses in February; he lost forty pounds, first of all, and didn’t have that much to spare to begin with.  He’s gained a few back and we hope to help–with Justin’s cooking–in his gaining twenty pounds more back (his goal) after we all move in together this summer.

Dad & Muffin, Feb. 2011

Dad & Muffin, Feb. 2011

I bring this up because today, Justin and I were in my parents’ town to celebrate Father’s Day.  Dad had gone to “break Mom out” of the home for dinner, so we all went out then returned to their home so Justin could help move some boxes (my father’s far more along on packing than we are, to no one’s surprise, despite his having had eye surgery only days ago, the use of only one arm, and being shaky while walking with a cane). I sat with Mom while Dad directed Justin and the handcart.

And I was totally unprepared for my response to Mom’s current stage of dementia.

Alzheimer’s, I’m finding, not only transitions with very blurry edges in the patient, but tends to sneak up and surprise the Hell out of the family members, as well. I’ve visited with Mom, in person, at least weekly for months now, so it’s not like there’s been a lot of time elapsed. I just was at her place on Thursday, four days ago.  But today, sitting with her in their Den, despite the fact that she was in a terrific mood and happy and laughing (and had been flirting with the waiter, in Norwegian), broke my heart.

My mother, the wordsmith, the woman who’s never been quiet more than two minutes in her whole life, the veteran teacher who taught grade school for forty years, who’s read and promoted quality language use her whole life, no longer has the ability to use the right words.

Mom, heading to California, c. 1944

Mom, heading to California, c. 1944

I’ve noticed this before, mind you; here and there.  It frustrates her, but I’ve always been able to understand what she was trying to say.  Often, she’s incorporated a word or concept spoken behind her (or on TV) into her own communication, but it’s been easy enough to follow.

Not today.  Today was an entirely different beast. A very ugly one.

She was speaking in word salad. Grammatically correct (as always, bless her heart); using the right parts of speech, correct syntax. But none of the words meant anything that she wanted to say.  Worse, when she’d ask one of us a question and wait for an answer, and none of us had the first clue what she was asking. It was as if she were randomly selecting words from pages in a dictionary, without any tangible connection to her thoughts that I could discern.

My parents, husband, and I: July 2007

My parents, husband, and I: July 2007

I turned off the TV, hoping that would help.  No.  I sought to find patterns in initial letters, or concepts, or images, but could find none.  Her brain seemed to simply be supplying words chosen by a roll of the dice.  And she had no control, and worse–she realized she had no control.

She attempted to maintain her sense of humor, and to keep communicating, but I was horribly frustrated and–to my own shame–embarrassed. Not of her, exactly, but of the whole situation. Damned mad, which I process by becoming overly anxious and short.  More than once, I left the room to find something to do to get away from the incomprehensible communications, and then I felt bad for doing that.

Next time, I hope to be more prepared for this.  I hope to find a way to communicate with words even when the words haven’t any meaning.  She could understand us just fine, which is helpful, but I can’t imagine being my mother, being the woman I’ve known, without being able to verbally express my thoughts. What a horrible, cruel, worthless shitty joke to play on her.

I hate Alzheimer’s more than ever, today. Hate it. Hate it more than cancer, waaaaay more than fibromyalgia or Hashimoto’s disease, more than anything.

Alzheimer’s has just robbed my mother of her greatest joy.

My parents and I, Mother's Day 2011

My parents and I, Mother's Day 2011

Have you seen Julie B.?

I’m not generally a sentimental person. At least in my adulthood; as a child and teenager, I had massive issues with separation anxiety and attachment, likely because of being bounced around my first two years of life (foster care, bio mother, foster care, adoption) and, well, I wasn’t a happy kid. I also grew up partly on a fishing resort in Alexandria, MN, which was fantastic (and I have more fond memories of that than anything else in my childhood), but also meant saying goodbye, weekly, to friends I’d made, as they went home to the Twin Cities, or Illinois, or Iowa.

I used to have to keep every memento, every scrap of paper or photograph or tangible evidence of life experiences, even to the point of obsession. It was seriously as if the event didn’t happen unless there were written or photographic proof.  Boxes filled.  Drawers were overflowing. Add to this the fact that throughout my depression- and anxiety-ridden adolescence, I kept a journal (oy, vey, the horror of that now), which became a ginormous stack of wire notebooks, filled with the most godawful declarations of angst and despair imaginable.

Veronica, 1996

Veronica, 1996

My stepdaughter from my first marriage, Veronica, now twenty-two and living the academic boho life in California, also recalls that I would photograph her every move. (She also recalls that I would always have Kleenex on my person, and together, these two things raise my Motherly Quotient.)

Along the way, however, something changed. I know I, myself, got healthier, in some ways–I no longer need photographic proof.  Ironically, this movement toward not needing memory-enhancements coincides with my own once-perfect memory losing its strength from middle-age and, mostly, effects of auto-immune diseases and fibromyalgia, but that’s another story. I recently saw a Michael Moore tweet that pretty much sums up my viewpoint, in some ways: “More crazy things we believe:Taking a picture of our kid getting his diploma is better than watching it w/ our eyes& storing it in our brain.”

Or, on the other hand, it’s less to do with noble philosophy and clutter and more to do with I really don’t want to remember a lot of things from my youth.

I have never attended a class reunion, for starters, and don’t really see a time when I will.  High School was miserable; I was bullied, I hated myself, and I still cringe when I see the building. Ick. For the most part, people I went to school with that I wanted to stay in touch with, I have–or I’ve reconnected in other ways–and I have absolutely no desire to buy a fancy dress to try to impress people who never liked me, nor I them, and listen to horrid 80s music that I couldn’t stand the first time around, spending money I do not have. (Okay, a slight bit of bitterness, perhaps…ahem…)

But I have lost touch with people from my past that I did like, and would like to talk to again, which brings me to today.  I dreamt this morning, before waking, of a couple of these people.  In this case, the kids of neighboring resort owners, kids I used to hang with quite a bit. Thinking of those two led me to think of others, and thus I’ve just spent the last two hours combing the internet, trying to locate them.  One of them I had a good lead on–I’ve been in contact with family members, etc.–and I’ve just posted to her brother’s facebook that I would like to get in contact with her (Julie B., are you out there?). She’s in St. Petersburg, FL, doing very well, and I seriously just watched nearly an entire online medical presentation about cleft palate babies because my old friend, a speech and language pathologist, was one of the presenters.  She looks exactly as I remember her at 16, dammit…

The other was tougher.  I found her mother’s obituary, eventually, which made me sad to see, and that, in turn, pointed toward Oregon where my friend now lives.  However, my friend has a very, very common name, and that’s as far as I’ll get right now, it seems.

Today’s activity leads me to a couple of conclusions.  First, the internet can be entirely scary. I did a search on my name (after finding the tool) and you can see a picture of my house. I’m not about to pay the money to find out if the site is accurate as to my hobbies, religion, and income. Second, nostalgia can hit at the oddest times, but perhaps it’s because I’m moving and saying goodbye to yet another place and group of people that’s triggered this. (Not to mention avoidance of sorting and packing…)

After my divorce in the late 90s, I found I wasn’t able to let go quite as quickly as I’d want to.  I’m not big on process, and I don’t deal well with the non-logical (i.e. emotional) aspects of life when they consume me. I sought a therapist, who pointed out something that should have been obvious to me: because of my attachment issues, I don’t do goodbyes. I’ve always avoided them.  I recently was explaining to my husband and a close friend, here, that I’m thrilled that I didn’t find my new job until my school year was over, because facing saying “goodbye” or having others say it would have been murder. I’m far better at just sneaking out in the middle of the night, leaving a note, and starting new without looking back as much as possible.  Which works fine, until it’s a divorce, of course, or others don’t understand and assume I don’t care.

And, I suspect, such behavior also tends to lead toward the frantic, “OH MY GOD I HAVE TO FIND JULIE!” moments twenty-five years later on a Saturday morning.

So, I used to have this life, see…

My husband and I just spent the last few days in Rochester, MN, as I was visiting–yet again–the Mayo Clinic (which I can’t recommend highly enough, but that’s for another post). I have, among other things, Hashimoto’s Thyroiditis, fibromyalgia, and asthma, and I was working on making these conditions better (though I’ve been a patient of so many departments that I can’t recall them all). Some treatments are going better than others, let’s say.

On Thursday night, Rochester was having (amidst its downtown road construction) its summer “Thursdays on First” street fair, with the requisite tents of fun and funky crafts, food stands, and live music. It was incredibly hot, but hundreds of men, women, children, babies, hippies, hipsters, teens, the aged, the healthy, the unhealthy were moving about happily, with a great vibe in the air.  We weren’t headed to the street fair–we had a goal of catching the Twins game at Newt’s, but that turned out to be full so we walked several blocks back to our car and found another place.

Now, I love street fairs.  Seriously love them. They’ve long been my favorite places to be.  I love the sense of community, the varied people, the wares for sale, the food-and-music, all of it. I would travel miles and miles to go to a street fair, no matter the type. I love the open air, the colors. I even used to love the heat and sunshine.

I realized as we headed back to the car that for most of my history, you couldn’t have dragged me away from the street fair, Twins or no Twins. I would have been looking at the purses made from coffee bean sacks, the handmade jewelry, eating fish-on-a-stick, dancing to the music, laughing and sweating happily. That person, however, is gone.

I was fatigued (fibro and Hashi’s both). I was in a lot of pain. The humidity made it very difficult to breathe (asthma). The bright sun hurt my eyes, my photosensitivity having increased annually. And, the more my autoimmune diseases take root, the more I realize that just as with people with Multiple Sclerosis, heat triggers flares.

And, well, I was broke, which didn’t help…

By the time we got to the car, I not only wanted to collapse in an air-conditioned heap with a Vicodin IV, I was in tears.  I mourned for the person I used to be. I grieved for the woman who loved spontaneity, she who would don a tie-dyed dress and bangles and dance no matter who was watching. Who didn’t hide from the sun, who didn’t take like 18 prescriptions daily, who didn’t have to pace her life so that she could make it to Friday without calling in sick.

And I hated who I’d become, feeling useless, old, broken.

Well, I recognize that spiral. Self-pity, like rich brownies, is fine in moderation but one cannot make a meal of it without negative consequences, so I allowed myself that little cry. We found a cool, dark place to watch the Twins. I had a good time with my husband, with a good meal and lots of laughs.   And I still mourn for that tie-dyed banshee, but I’m not completely willing to give up on being her again. I don’t know how…but I am determined to not lose her entirely.

Maybe I’ll have to choose a “good day.” Maybe I’ll have to dance a little less, move a little more slowly. Maybe I’ll have to pre-medicate before going to the fair. Maybe I’ll have to pick a cloudy and cool day. I will likely have to concede the spontaneity, but I do not have to give up completely.

So, I’ll have my little cries, and I’ll vent on facebook and twitter (my spoonie friends understand). My husband will know how much this really bothers me, and he’ll be my hero, always, for making my life possible without making me feel weak.

And I’ll go dance in the freakin’ tie-dye, dammit.  Eventually.

Me, BCH (before crap health).  Huzzah!

Me, BCH (before crap health). Huzzah!

Reclaiming, Reintegrating

It’s the time of year when I get excited about planning my upcoming year; reflecting on what worked last year and modifying, choosing news stories and texts in some cases, finding new ways to teach the material, revamping what I do and still like.  It’s not stressful because I have time, and since I love organizing–concept organizing, that is, and not, say, closet organizing–it’s fun.

This summer is no different, but I have another item on my agenda.  One that isn’t about teaching, or education, or even my profession at all (although it impacts that, as well as everything else).  It’s about re-integrating my mind and body.

No, I’m not on some new-agey kick (not that I have anything against that, it’s just not me).  I’m not trying to find myself, and it’s not even a midlife crisis (although, come to think of it…).  It’s simply that over the last four years of medical comedy in my life, diagnoses and treatments and surgeries and prescriptions, I’ve lost track of my body.

More than that, I’m realizing that I not only have separated my body from “me” in such a way that it’s a foreign object, but that I absolutely hate this foreign object.  It causes me pain, and frustration, and it won’t do what I tell it to, and it keeps failing, and it interferes with everything I want to do.

I’ve been finding myself, more and more, watching commercials or programs or people in real life doing things that I used to do–simple things–and more and more I find I resent them, and hate my body, because I can’t do that.  Running, walking, canoeing, bending, reading, doing handicrafts.

I’m finding myself using language that highlights this separation, that labels my body a traitor, and I use metaphor that is violent (“I want a chainsaw to cut off these arms right now”).

I’m resentful–angry–over my eyes failing me when I’m an English teacher.  My reading has decreased an immense amount over the last three years or so, and it’s because I literally cannot see well enough to read at times–and it’s becoming more and more common. So many doctors, so many different “solutions”, and none of them have worked.  Meanwhile, my eyes get worse (and I had better than 20-20 vision for all of my adult life until recently).

I’m saddened and betrayed by the miscarriages.

I’m loathing of the autoimmune diseases that are killing parts of my own body, but it’s my own body that’s doing it.  I hate the pain, and I really, truly, hate the fatigue that keeps me from living the way I used to, from working as hard and as much as I used to.

I don’t like looking at myself–these conditions have done their damage on my appearance (weight, skin, etc.)–and all this resentment has built up so that, as Esperanza says regarding her environment vis-a-vis her *potential* at the beginning of The House on Mango Street, I feel like I’m a red balloon tied to an anchor.

And the key point there is that the “I” has nothing whatsoever to do with the body.  Separate entities, working against each other.

So, from discussions with my husband and a good friend–one who’s editing a book by a woman with a very similar journey–I’m realizing that this summer, along with setting up my Moodle courses, and finding a new novel for LA 8, and planning my new classroom, I have to re-integrate myself into a whole.  A flawed whole, granted, a whole with many parts missing and many parts not working properly, but a whole individual.

I need to learn to love this body again, and then perhaps I can heal.  And it’s not going to be easy.

My first steps?

And, since I’ll be teaching on overload this upcoming year *plus* going to grad school, I’m thinking now what I can realistically say “yes” to and what I will have to give up; I’m only one person, and one person with limited physical resources.

Of course, at the same time this is happening, I’ve managed another incurable diagnosis (spinal arthritis) to add to the Hashimoto’s, the Fibromyalgia, the Asthma, the (continue long, boring list here).  Also, my incision from a minor surgery on my back a couple of weeks ago has become, as happens often with me (weird immune system I have), infected.

But I’m trying very hard to not resent; accept, find the lessons, and adapt.  The resentment and hatred I’ve been carrying is contributing to the fatigue, I can only imagine, so it’s a mighty fine place to start.

Dear Mr. Governor

As an addendum to yesterday’s blog, a communication I sent to Governor Pawlenty, R-MN, this afternoon, via his website:

Dear Mr. Governor:

I’m writing to let you know that your continued vetoing of statewide health insurance for Minnesota’s teachers, and your general non-support for Minnesota teachers and education, is forcing me to choose between continuing to teach or putting my life at risk without health coverage.

I live in outstate Minnesota (Marshall), and I teach in a small district.  My health insurance currently costs me over $500/month (after my district’s contribution) for individual coverage.

I’ve recently married, and my husband is without insurance.  To put him on my policy, I would be paying $1230/month–out of pocket.

Before we ever saw a doctor.

Worse, our rates are going to increase in July by at least 20%.  I will be paying just under $1500/month for insurance for the two of us–and I only make $28,000 (2008 W-2) to begin with (and my husband makes less than $15,000 a year at the same district, without any benefits, as a paraprofessional).

We cannot live like this.  And I blame you.  We Minnesota teachers have tried, repeatedly, to pool our insurance resources, only to be thwarted by you and/or the Legislature time and again.  This past year’s veto was absolutely a kick in the teeth for each one of us.

We are already pooling through our local service cooperative, and I had to laugh, bitterly, at your recent call for all districts to pool for resources—you only call for that until it comes to statewide insurance.  That, you will not LET us pool!

My income will not increase for next year, but my insurance will—dramatically.  I have two college degrees and seven years experience as a teacher who regularly works ten-, twelve-, and fourteen-hour days.

I deserve to be able to keep my job and get health care and I shouldn’t have to choose between them.

Shame on you.

–Karla Olson
Marshall, MN

Right now, I’m unsure what to do.  I have pre-existing conditions that would make it impossible to find alternative insurance for me.  This also means I cannot go without coverage.