A Day in the Life – Then

Contrasting what my life is like now, compared to when I was diagnosed, the difference is striking.

Sleeping was hard. My hips hurt so much that I finally bought those egg-crate shaped foam cushions for some extra-soft padding.  One helped, but I found that two layers were even better.  When I managed to sleep despite the hip pain, my body’s temperature regulation would malfunction.  It was almost like having a fever.  Sometimes I’d feel like I was freezing, but other times I’d wake up drenched in sweat.  Sleeping on a large bath towel was a necessity if I didn’t want to have to change the bedding daily. Normally I’d only get to sleep 2-3 hours at a time before waking soaked, or shivering, or by a toddler who needed some middle-of-the-night TLC.

Upon waking in the mornings, I’d work my hands open and closed, first attempting to make a fist, then opening my hands and trying to straighten my fingers. Back and forth, back and forth, until finally my hands no longer felt swollen and the fingers would move as I wanted them to move.

I’d lay there waiting until my husband went to shower, then I’d roll over and slide out of bed.  As soon as my feet hit the floor, I’d yelp and fall back onto the bed.  Then, after recovering from the pain, I’d gingerly lower my feet to the floor and gradually add weight — a little at a time — until I could stand.

Once vertical, I’d shuffle to the computer and sit there, checking email and catching up with friends’ & relatives’ Facebook pages while awaiting my turn for the morning ablutions routine.  While sitting at the computer, occasionally I’d lean forward and rest an elbow on my desktop, then quickly jerk my arm back while searching fruitlessly for the needle or push-pin or whatever it was that had jabbed me.

In time I discovered tricks to make mornings easier:  sitting down in the shower, staying in the shower to comb my hair before rinsing out the conditioner, slipping into a terry-cloth robe as a simple way to dry off (no more trying to reach my back with a towel), setting clothes out the night before instead of having to bend down to reach low dresser drawers first thing in the morning when I was stiff, and rearranging the closet so that all my clothes were on the waist-high rods (my husband’s shirts and slacks got moved to the top because his shoulders work just fine).

Eventually I’d make my way down the stairs.  The occasional stab of pain in my knees would make me think of my father, and how (even in his 40’s) he’d joke about being “old and decrepit.”  It’s not quite so funny when you’re the one who seems to be falling apart prematurely.

On his way out the door, my husband would tell me, “I love you. Don’t overdo it today!”  Then I’d sit down to figure out exactly how much I might be able to accomplish. That usually involved examining both the chore list and the calendar to see what was most pressing.  I knew that if any errands had to be run, they had to be done between 9 and noon; I couldn’t have the kids ready to leave before 9:00, and I’d be out of energy by noon.  Another constraint was that I could go a maximum of three places; after that, I would be too exhausted.  Little did I know that things would get worse.

I recall going to see my grandfather in eastern Washington one weekend. It was a miniature family reunion, and although it was great to see people, all I’d done was sit and talk, but I was wiped out. On the last day, we cleaned up our meeting hall and everyone was ready to leave right after lunch. Me, though?  I was ready for a nap and dreaded having to drive back across the mountains when all I wanted to do was collapse.  When it was time to get into the car, my daughter got sick.  I felt awful for her, but a little part of me was thrilled to phone my husband and tell him we were staying another night.  We got to sit in the hotel room and rest, and I was fresh for our drive home the next morning.

Things got worse.  I was teaching swimming lessons two half-days a week, and was also head of the kids’ program at our church’s midweek service. What people didn’t realize was that I was getting worse and couldn’t do anything else.  I would drag myself to the pool, then go home and collapse.  Aside from those teaching commitments, I didn’t leave the house. I went from three-errands a day to three a week.

Back then, it was hard to get things done.  When you have the flu, you have no energy.  It was just like that.  I could wash the laundry one day and fold it the next, but never get it all done in one day.  I’d make a grocery list and email it to my husband, who would stop and do the shopping on his way home from work.  Just about all the meals went into a crockpot right after breakfast, because by mid-afternoon I’d be too tired to cook supper.  If I didn’t manage to get the crockpot started, everyone knew we’d be eating either beef-n-beans or pancakes (because I can whip up a batch of pancakes nearly as fast as you can pour a bowl of cold cereal).  We had always had a garden, but that year never got one planted. I was perpetually exhausted.

Exhausted… and confused. Why did it feel like there was something sharp poking my elbows even though there was nothing there? Why did raising my arms make my shoulders hurt? Why were my feet and hands swollen in the mornings? Why did my hips hurt so much?

That was then.

Continue to Part 2

This Crazy Whirlwind of Life

Honestly, those of you with kids in public school, I don’t know how you manage.  My son made the basketball team, so I have had to drive him to the school for either practices or games every day.  Then I have to go back and pick him up.  If there’s a game, I stay and watch.  It is exhausting to arrange my schedule around someone else’s — I’m accustomed to setting my own schedule.  And this is only for basketball season; I can’t imagine doing it all year long.

This has been going on since mid-November, and I’m beat.  The only day they don’t practice/play is Sunday (oh, they also got Thanksgiving, Christmas, and New Year’s off).  The season is almost over, but there’s no rest for the weary.  Now that the high-school aged son is nearly done with basketball, the youngest son has begun to play.  I had to quit teaching swimming lessons so that I can transport my basketball players.  Now that I think about it, cessation of swimming probably contributed to the return of my shoulder and hip issues.

Even knitting has become painful.  I drag my knitting bag along to all the basketball games.  All that time I would have wasted, just sitting there waiting for the game to start, has added up to two pair of socks, three hats, and a pair of mittens.  It’s nice to have something to show for all that sitting-around time.  Unfortunately, for the past few days, my shoulders have hurt even while resting my elbows at my sides — that’s worse than usual.

Wouldn’t it be nice to treat ourselves sometimes?  When my animals are sick, I can go to the feed store to buy medicine. Just today I gave a cow two shots s of LA-200.  In the spring I give vaccines to our horses. When they’re injured, I can clean them up and apply bandages. We have a stomach tube for calves that won’t eat.  Yet for some reason, there is no way for me to say, “Look, I’ve had this problem with my shoulders and hips off-and-on for six years.  Can’t I just cut out the middle man and treat it the same way it’s been treated every other time?”  No.  Instead, I have to phone my doctor’s office, make an appointment, spend two hours on the road for a short visit with the doctor who will do the same exam he always does and recommend the same treatment as usual.  Wouldn’t it be nice if I could go online, do the point-and-click thing, and a few days later have a bottle of kenalog show up in my mailbox?  No travelling. No time lost.  Not that I don’t like my doctor.  I do.  It’s just so overwhelming to think about going to see him yet again, that it’s easier to just stay home and deal with the pain.

This is why I haven’t been blogging.  Life has been even busier than usual, and the bursitis & tendonitis have been waging war.  My computer is upstairs, and I’ve been mostly staying downstairs.  I’ve even been sleeping in a recliner in the living room since November (instead of climbing the stairs to torture my hips and shoulders by squishing them against a mattress).  Something needs to change.

Miscellaneous other stuff, since I haven’t posted in ages:

Last month I finally took dear daughter to see her rheumy in Seattle.  The doctor saw why I’d been phoning and pestering her to treat this more aggressively. DD is now on a DMARD instead of just NSAIDs.  She’s also getting some pretty intense physical therapy.  More about that another time.

Both my college kids came home for Christmas break.  It was great to see them and hug their necks.  Our son is planning a service-project trip for spring break, and is applying for an internship over the summer, so I guess that means he’s all grown up and on his own, and we’ll see him again next Christmas unless we go to visit him in Texas (which we are considering).  Our daughter, however, plans to be home both for spring break and over the summer; we are thrilled.  My husband and I are both the oldest child in our families, and really had no idea how hard it is on the younger kids when older siblings grow up and move away.

In other news, totally unrelated to RA (but I could make a case following the RA/food allergy thread), my ducks molted.  Molting means that their feathers fall out and they quit laying eggs.  Not good, since the people in this house without a Y chromosome do not tolerate chicken eggs.  We eat duck eggs.  I finally threatened the ducks, and said that if they didn’t produce, they’d go in the soup pot.  Two started laying.  I should’ve threatened them sooner.  1-2 eggs a day isn’t really enough, so I increased my flock.  Unfortunately, the new ducks are all white, which means that they are much easier than brown ducks for owls to see in the dark.  It’s been most frustrating, but I started shutting the ducks inside at night and haven’t lost any more heads.

AND… if you just skimmed:  IFAA is doing some great chats with blog leaders on the Facebook page.  I am signed up, but don’t even have a date scheduled yet — because, seriously, nobody wants to do a chat at midnight, and I feel like I’ve been running from first thing in the morning until the rest of the household is asleep at night.  That seems to be the only time I’m not committed to doing stuff.  Basketball won’t last forever, though.  Meanwhile, please check out the Facebook page and participate in the chats!

Wishing you painless days!

The Dilemma

“Mommy, would you come here?” calls my son.

As I trudge into his room, as I seem to do every night after he’s been tucked into bed, I speculate.  If I were a gambler, I’d bet that a joint hurts.  Which will it be tonight?

Sure enough, when I arrive in his room, I hear him declare, “My knee hurts.”  I turn on the light, examine the joint in question, and ask the usual questions:  When did it start hurting? Do you know the cause? Does anything make it better? Does anything make it worse? Does anything else hurt?

Tonight we’re lucky. It’s only one knee.  Nothing out of the ordinary hurts, just the usual stuff.  “The usual stuff” being his ankles and a headache, plus he doesn’t feel good.  Sometimes it’s his back, often it’s both wrists or his heels.  This kid has more aches and pains than his grandmothers.

It’s not stalling tactics; he isn’t trying to stay up later.  It’s almost as if he can keep things in the background while he’s up and running around, but once he settles into bed, the pain starts screaming for attention.

Dejected, I wonder what to do.  Is there really any point in taking him to see our family physician?  I anticipate x-rays of the joint-du-joir, an expense that would yield no diagnosis of the problem.  Next, a blood draw that might or might not show any abnormalities.  Then, I expect some deliberating… is this nothing, or is this ERA… and eventually a referral to a pediatric rheumatologist.  More poking and prodding and time spent.  Eventually we’d get an NSAID prescription.  I’m inclined to skip all the expensive, time-consuming diagnostic process and just give the kid OTC children’s ibuprofen.

Sometimes doctors give a medicine to see if it will help. I can certainly do that on my own without spending a couple thousand dollars.  If the ibu works, problem solved.  If it doesn’t help, then at least that provides more data for when I eventually do take him to the doctor.