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Hobbling home

So far the increased dose of Pirfenidone, or placebo, is going well. I’ve had some diarrhea again (it had gotten better) but then again, it’s been a stressful week. I’ve also had some minor joint pain in my ankles, fingers and wrists – but again, I’ve had this problem before.

This evening I got off the bus early and went to Michaels in search of some scrap book supplies. I’m not exactly into scrapbooking. I just don’t have the time, and if I did, I’d prefer to paint. But, I’m trying to make a special surprise for some of our biggest Hermansky-Pudlak Syndrome fundraisers. Feeling just great, I grabbed a salad at Wendy’s for dinner and decided to walk home. It’s a long way. I used to be able to walk it with little trouble, but in the last year it’s become pretty hard to do it without stopping in some place for a rest. But, knowing it would be good for me, and since it was a Friday night with no deadlines over the weekend – I splurged and walked home.

I’m not sure it was a good idea. I now feel pretty tired, and for some reason my feet and lower legs are very swollen. Okay, now, that’s a new symptom! What’s up with this???? By the time I was getting close to getting home I was hobbling along, feeling quite out of breath, and my feet just hurt!

I rested when I got home until Ryan called. I went to get up to answer the phone, and my poor feet just refused to move! I made them, and they protested loudly! I don’t know what to make of this. My trouble walking long distances is stamina, not pain.

But, an upset tummy and joint pain were two possible side effects. I could literally drive myself around the bend trying to figure out if I’m the drug or placebo. I really want to stop thinking about it. Yet, as these weird things happen to my body, I can’t help but wonder if I’ve got the real thing. Boy am I going to feel silly years from now if I find out I was on the placebo (although I haven’t decided if I ever want to know.) Could all this really be in my head? I really feel like I’m coping pretty well with everything. Would my mind deceive me like that?
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