Hurty Gertie

Even without the writings of Kelly Young, before my diagnosis I had a bit of an idea, from a few diagnosed RA friends, what their days were like. The research they do on treatments, the ways they get through the day.

But reading isn’t feeling. Though the entry linked above made me glad I did finally listen to my body shouting at me that something was wrong. Maybe I’ve “caught” the PsA diagnosis early enough (and the treatment methods now let doctors treat before joint damage sets in) that I can put off the degenerative part of this disease as long as possible.

1996-2009: Corporate jobs as a desk jockey, overweight but losing it in fits and spurts, gaining and losing it with pregnancy and breastfeeding. Meet some friends with RA and try to sympathize.

In this time period I have back pains, gall bladder surgery, and otherwise standard health. Had the flu once. Yuck.

Tired and kind of just whatever about life, joys aside; figure I’m fat (in the 180-200 range) and should fix it. And find a job with a shorter commute. :-)

First of 2009: Endometiral ablation, putting an end to my fertility and sporadic menstrual pain-a-thons.

Spring and Summer 2009: laid off early in the year from a long-time long-commute corporate job; flying a desk and doing a lot of typing, reports, and such all day for nearly a decade, much like the employment I’ve had for fifteen years. Part time Stay at home mom and job hunter. Small jobs keep me busy sometimes, but nothing permanent comes up.

Tired a lot. Depressed a lot, trying not to take the economy personally. I weigh 240ish and make sporadic attempts to do major reorgs of the house, my life, the kids, and my health. Fail.

Fall 2009: Part time desk jockey for a local company. Laid off for lack of funding for my role.

I’ve been kind of tired lately. Not eating right, long commute, house, kids, everything going on. Try dieting and cutting back the carbs. Try exercising more but I keep “injuring” myself. Figure I’m just out of practice doing everything, lazy from staying home.

One day my left hand is in so much pain I go to urgent care to have it x-rayed for a broken bone. Removing my ring for an X-ray mitigates the swelling significantly; when I weighed this much and was pregnant, I had my ring off then too.

Several Months ago (November 2009): Stay at home, part-time web designer, job hunting.

I’ve been pretty tired lately. Not eating right, kind of bummed out in general, and I think that I “keep injuring myself”, especially my left hand and left knee – they swell and hurt. Makes working out hard. Some days are good, some days are bad. I’m about 240 pounds and I’ve not been that heavy since the birth of my last child.

One day I wake up completely swollen and exhausted, like I’ve been running marathons with my joints. They are on fire and I cry when I’m walking.

I go to Dr Dude’s office and see the Cool PA who runs a bunch of blood tests and tells me to try a lot of OTC NSAIDs.

I catch a cold and the pain goes away.

The cold goes away and the pain comes back. Cool PA says go talk to Dr Local.

I talk to my RA friends and go see Dr South.

The pain and the exhaustion has me very miserable and depressed. Spouse has to take up most of the slack with the kids and they miss their sleeping mommy. I sleep so much. And nap, too.

I drop things. A lot. I lose six bowls and two plates, plus a new serving bowl that I bought to replace some broken crocker. Thank goodness my cell phone has a tough case because I drop it ALL the FREAKING TIME. I can’t open “easy tear and share” packages. Scissors are my new friend.

A month ago (Jan 2010): Stay at home mom, trying to be part-time web designer, job hunting.

I have been on a prescription anti inflammatory drug, prescribed by Dr South, for six weeks. I also take a heartburn med because this NSAID is supposed to make me acidy. Dr Local recommends I try to start weaning myself off of it.

Dr South has tested me for Tuberculosis (negative) and Celiac disease (status unknown). No tests for RA or other causes come up positive, and I don’t have any identifiable genetic quirks that might give us a clue as to what is going on. Based on my head psoriasis (inherited and hopefully not passed on) the presumptive diagnosis from both Dr South and Dr Local is PsA. No one says Asymmetric, but that’s my guess based on my symptoms. I choose Dr Local for driving reasons.

My main complaints are exhaustion and joint pain – half a day at the pool with my kids (three hours of lounging in the water and watching four kids do their lessons) can require a 2hr nap to recover. If I exercise in the pool, some days I have to use the stairs to get out as I cannot handle the ladder.

Most of my body is swollen, but one side more than the other. I’m dropping things, but not much; mostly I avoid using my non-dominant hand. Sometimes  I can’t lift things with even both my hands.

The exhaustion is crushing, and missing a dose of my NSAID throws me off for a whole day or more.

I cannot do as much as I could do a year or three ago.

Today (Feb 2010): I am a Stay at Home Mom and trying to be a part-time web designer. I am also currently looking for a full time job with medical insurance that I can meet the obligations of. This economy sucks.

I have been on a TNF Inhibitor for two and a half weeks, prescribed by Dr Local. I’m also taking B vitamins on request of my doctor and other vitamins with her approval (calcium, C, D, cinnamon). I am in the process of weaning off of an anti-inflammatory drug that makes me nauseous but got me through the holidays (mostly).

My main complaint is mostly exhaustion. The last few days I’ve slept (or tried to sleep) at least ten hours. Chasing kids and keeping up the house … or keeping the insanity down, the house is not in any “up” condition. When I can’t sleep I at least make myself rest. But while I’m sleeping less than in November, it’s still a lot.

I’ve got one side of my body more swollen than the other, but not hugely swollen. I’ve got mild joint pain on the swollen side. I’m toying with limiting or eliminating wheat gluten from my diet.

I cannot do as much as I could a year or three ago, physically, mentally, emotionally (sometimes).  For example, I can loosely grasp things in my non-dominant hand, and apply some pressure, but I can’t always open jars I need or carry heavy things (4/5 pounds) with certainty.

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