Thursday, June 9, 2011

A Glowing Bride And My FrankenJoints

This is Amy. She works in the same building as me and she's getting married next weekend. Every day this week, her coworkers give her a new bridal item to wear. Note the giant rock on her finger that she received on Monday. It glows. On Tuesday she got the banner. Wednesday, the garter. She had a purple bride-to-be necklace on today. And tomorrow she gets showered. It's been great fun for everyone.

Today I finally saw the rheumatologist. It's an appointment that was arranged 11 months ago at a time when my joints were still really bad. Even though things aren't nearly as bad, I kept the appointment because my joints still bother me a bit. Not enough to be a real quality of life issue, but they are still bothersome and I'm not sure if this is permanent or if there's something that can be done to prevent future damage.

After a lot of bending and prodding and many questions, the doctor had an opinion. She said I have a "very interesting body". I told her it was nice to know that someone besides my husband thought so. When I describe my joint problems, it sounds really strange to me and it doesn't make a lot of rational sense. In my opinion. So it was a relief to me that the doctor and her intern both "got it" and that what I describe is the way some types of arthritis work. What I describe sounds, to the doctor, like osteoarthritis. She sees many women who struggle with joint problems from anti-estrogen drugs (such as Arimidex and Tamoxifen). She can't tell for sure if my continued issues are still related to the drugs I'm taking or whether I might, by chance, be experiencing some arthritic problems that would have happened anyway. Between you and me, I'm quite sure it's all related to the drugs but there's no way to know for sure. She expects that my joints will see further improvement after I'm finished with Tamoxifen ... in another 4 years. In the meantime, she says there's a drug that might help and she's going to recommend it in her report to my family doctor but if my situation is easily bearable now (which it is), she says I might choose not to try the drug which has a low level of narcotic in it. I think I might try it just to see if it makes a difference. I won't make a decision, though, until I talk about it with my family doctor. He might have some thoughts on this. She thinks my hip joints will benefit from physiotherapy. Honestly, the rheumatologist was a lovely and most personable woman but she spoke so quickly that now I can hardly remember all she said. I didn't really have time to absorb it. The intern worked with me for quite a while first and then when she came in it was a bit of a whirlwind. I wish I could remember more but perhaps I'll get a copy of the report, which will twig my memory and provide me with the terminology that didn't stick in my mind.

Here's how I described my joint problems. First, I stipulated that they are now bearable. That said, my most problematic areas are stiffness in my feet and hips. My hips are never sore. Just stiff. My feet are sometimes stiff and sore. My ankles, though, are neither of those. My knees can sometimes hurt but they are never stiff. To me this seems strange and unlikely but I was so glad that this was deemed reasonable by the doctor. The worst pain in my feet is in my heels and my big toe joints and the stiffness is mostly in my "flipper action". Sometimes my feet just don't want to bend that way, hence my "Frankenwalk", which I'm quite good at keeping to myself when I'm out in public - I've learned some tricks such as "strategic lingering" while my joints "settle".

My fingers are often stiff and sore though the joints don't appear swollen. My wrists and elbows aren't at all problematic anymore and because of my previously frozen shoulders, it's hard to know with them. She did comment that my range of motion in my shoulders is really very good in light of my frozen shoulder issues. She said it's usually about 2 years before they're thawed enough to get most of their range of motion back.

I explained that I'm a bit stiff in the morning for a while. I'm a bit limpy for a while and take the stairs one at a time (because my flippers won't bend much yet) but by the time I've had breakfast and have moved around a bit, I can run up and down stairs with no problem. I explained that during the day, when I go from sitting to standing, I have to stand slowly and then "let my bones settle" before I can straighten right up and before I can take a few slow steps. It's not usually long, though, before I can walk normally and pain free. I can't go from sitting to moving in a hurry, though, without doing my "Frankenwalk" or worse, my "Frankenrun". For instance, when the phone rings at home, it's not a pretty sight to see me hurrying to answer it.

The other symptom that seems strange to me is that even though my joints seem to limber up as I get moving and then they seem fine ... that effect only lasts for a while. If I walk for very long, my hips and feet, in particular, start to almost seize up and I get quite limpy. For instance, I might be walking along just fine and then if I stop ... at a light of to talk to someone ... and then start walking again, my limbs have often stiffened up and I have to limp for quite a while. But then, if I sit for a time, I might be able to walk normally again after that. Maybe. Then again ... if I'm really active (like when we were in New York or after walking around Fredericton), my joints in general are worse in the evening and I'm pretty limpy for the most part. In fact, sometimes walking is quite a challenge. But, the next morning, my joints are back to their "normal" stiffness.

I don't get it. It's nice to think, though, that there's a possibility that things will improve when I'm finished with Tamoxifen.

So that was my big excitement for the day. Here's my tip of the day: If you think you might need to see a rheumatologist some time in the next few years, you might want to get your family doctor to arrange an appointment for you now.
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