Some Hardware - Part 1

It seems that slippery slope I referred to in my last post landed me in in the Grand Canyon of joint pain, erosion and immobility.

As always, it started with a trip to my rheumatologist. Nice guy. Good care on a consistent basis. A few times when I've been flaring he's taken my call and talked about medication adjustments. I see him every 4 months, give or take.

My shoulders weren't working so well. Anything where I was reaching (doing laundry or reaching into the back of a cupboard) or lifting (mainly small children) or above my head (washing/styling my hair, overhead cupboards) wasn't all that easy for me. And this applied to both my shoulders fairly equally. At times there was shooting pain, dull pain, resting pain or little creaks, twinges and nigglies. It was getting harder to do day to day activities.

I asked my rheumatologist about my shoulders. He initially seemed hesitant about getting X-rays until I insisted a little. Always good to be a strong advocate for your own health care - you know your own body. I knew that there was damage, but I wanted to know how much. My first set of X-rays were taken in March 2008. At my next appointment the radiology report indicated almost no space left in the joint and that there was significant damage. The average non-RA person would have cartilage to create space in their joint so it moves smoothly, without pain. My RA eroded my cartilage and was started to move bone-on-bone. Yes, that is as painful as it sound.

This wasn't great news, I knew that much, but the thought of surgery never entered my mind, even when I was referred over for an orthopedic consult.

As with any specialist, ortho surgeon consult appointments are about a 9-12 month wait time here in Ottawa. So I put it to the back of my mind. Fate, it seems, interceded on my behalf as after only 2 months I had my consult appointment. It was a Friday in December of 2008. John, my husband, came with me. My surgeon, like most surgeons from what I hear, was not so great at the people skills. He did a physical exam and looked at my shoulder films. And then told me the most unexpected and devastating news - that both shoulders needed to be replaced, relatively soon.

I don't really know what I was expecting from the appointment. If I'm really honest, I thought surgery would be a few years off. My functional ability was OK and I had some pain, but I wasn't completely disabled.

The damage in both shoulders was equally bad. The surgeon explained that there comes a time where surgery is not possible as there is not enough of your own bone to work with and the repair can't be done. If I waited too long, I wouldn't be able to even have the surgery as my shoulders were deteriorating at a fairly rapid rate.

Given his people skills, it then turned into an awkward and - in retrospect - funny conversation. He asked me if I wanted to book a date for my TSR (total shoulder replacement) now, or if I wanted to think about it. I felt like I was buying a car - you know that pressure to make a decision right then and there? Strange concept to apply to your healthcare. I said I needed to think about it and would call for another appointment when I had made a decision.

And then I left the exam room with John and I started sobbing. Full-body sobs. We walked around the hospital in all the wrong directions trying to get out to our car, but not really knowing where we were going. This was the first time that I ever remember being in shock. This news wasn't mine. I was too young, I mean who has a TSR at the ripe old age of 33?

This day easily made my worst top 5 days ever.

I used to be able to do that....

It's a slippery slope down the "I used to be able to do that" path. One day you can't seem to raise your arms high enough to wash your hair properly and it causes you to think for a moment - I used to be able to wash my hair and now I can't... when/how did this happen?

I also used to be able to stretch my wrists so my forearm and palm made an 90 degree angle, but now I can't. How did that happen?

My fingers used to be straight and now they're not. How'd that happen?

Losing my range of motion happened slowly over time and only after enough time has passed that you notice that can't do what you used to. Fortunately for me, the lower half of my body is pain-free with a fantastic range of motion. My upper half, not so much. I can walk, run a little (should, for some reason, I choose to), skip, tread water and twist into some amazing yoga poses that involve my lower half. I will not, however, be breaking any world records for push-ups. My wrists and shoulders have some significant and permanent damage and just don't move that way anymore.

It's funny about losing your range of motion - the current state of my wrists have become my new "normal" and I accept them as is. I don't really remember the time when they were able to do more for me. I am grateful that I can walk without any mobility aids. I love my independence. I remember when I wasn't so able-bodied, and that makes me appreciate the here and now even more.

With experience over the past 18 years of RA, I'm now more proactive with my health care. I feel that I could have been more on the ball with my wrists, in retrospect. It happens so slowly that you only see it years later. From this experience, I am very aware of how my legs, knees, ankles and feet are doing, and any changes I raise with my rheumatologist. I've learned a hard lesson on early intervention and active care for your joints. They can replace some - but not all - and I'm not aspiring to become the bionic woman!

Dreaded Tuesdays

Weeks pass - they come and go. Life is busy with work, family, friends, groceries, errands and everything in between. For some reason, every Tuesday, the world stands still just a little. Tuesday night is the dreaded Enbrel night. I started taking Enbrel in June of this year, to combat some of the damage RA has wreaked on my body. So far I have 1 replaced shoulder with one to go. I'd like to keep the joint replacements to a minimum, if possible.

Every Tuesday after dinner, I start thinking about it. And dreading it. Given my medical history of shoulder replacement, countless vials of blood, gestational diabetes and untold numbers of joint injections you would think that a little needle each week would not be an insurmountable task. Well, some weeks it is. At the beginning I would sit on the edge of my bed staring at my thigh for 20 minutes, willing myself to just get on with it. Other times, I would have my husband sit next to me so I would move it along a little faster.

It doesn't hurt that much. But I dread it nonetheless. In a week of moving from one thing to the next, and ignoring my RA, this causes me to pause and take a moment to consider my health. Sometimes I just don't want to do that.

Lately I've been getting better. The dread starts as I head up the stairs for bed. I quickly gather my alcohol wipes, kleenex (for the bleeders I have sometimes), a band-aid and my auto-injector of Enbrel. I take less than 3 minutes these days, and just right down to business. 1,2,3 and in she goes. I'm getting better at it, but that doesn't mean that I like it...

Motherhood & RA

I have 2 beautiful, healthy and happy kids - who have a lot of questions. Patrick is 4.5 and very observant and starting to ask questions.

What is that box in the fridge for mommy? (that would be my Enbrel).

What does that thing on your wrist do? (that would be my wrist splint from a recent flare).

Do you still have an owie on your shoulder? Can I kiss it better? (that would be my 5 inch scar on my left shoulder from my total shoulder replacement in May.)

Why are you so tired mommy, do you need a nap? (that one could be asked daily)

While they are too young now, what do I tell them about mommy’s ongoing "owie"? How would they ever understand? I’m not sure I understand. I can just hear Patrick’s inevitable question “Why?” - taken to the nth degree as only 4 year old can. For now, I'm sticking with the basics of mommy needs some extra medication to help her. I think that is enough, for now.

I worry, though, about the future. How will my RA progress? What will/won't I be able to do? Will I be able to dance at Patrick's wedding? And worst of all - every parent's nightmare - will they also get (J)RA?

I know consciously I need to focus on the here and now, and not live in the future. But my sub conscious has a mind of its own, and still, I worry ...