It has been one of those weeks when all I wanted to do is whinge – that’s why you haven’t seen a blog post from me. I need to keep my promise of a no whinge zone. Life has certainly been interesting lately, it feels so much better to come out of the tunnel than being stuck in the middle with no light in the distance. The drug study I was on was a real trip – I usually don’t get such bad side effects from drugs, but for some reason my body was not happy with the whole thing. The frustrating part was finding that it was beginning to help, but side effects that made me so miserable weren’t worth the trade off. I think I am almost back to normal- though now instead of diarrhea, I am constipated. Well, at the momentI I can deal with that.
The group doing the drug study is really great, they were really sorry I had so much trouble with the drug. The only part I will miss is seeing my “friends” there, that’s how I have come to feel about them. We kid around and I give Chris a hard time when he comes to draw blood – many tubes of blood! I tell him he looks too eager when comes into the room, that I see through his sweet Southern boy “Aw Shucks” act. He actually does a very good job, I hardly feel it. Apparently I run like a faucet, so they don’t have trouble collecting blood for their tubes. I have one more visit and I am done – last exit visit.
They have another study for another drug, they gave me information about it. I read through it and it made me uneasy – so much more blood work and 4 visits where I have to stay 6 hours. At this point I can’t stay that long and it doesn’t appeal to me. Doing the blood monitoring was no big deal, but this sounds a bit more than I am willing to do. I’ll bet that is the one with a shoe box full of tubes instead of box about a third the size for the one I did. They were very understanding when I declined, it didn’t really surprise them.
I went to see my rheumatologist last Thursday, it’s been 6 months since I have seen her. So Jenn, her nurse, asked me if there have been any changes, so I told her about my broken hip. Turns out they know my surgeon as well. The doc gave me two bits of information I didn’t want to hear – a broken bone doesn’t work as well as if did before the break and 70% of people who break a bone, break another within two years. I have decided I am in the 30% that didn’t. She was also delighted to hear I am on Medicare, now I can qualify for the biologic drug she has been wanting to put me on for 10 years. So she is going to check to see if it it will work to cover the cost.
I am happy to say I am beginning to sleep at night again, no more gas and bloating or upset stomach where I have to drink baking soda and water to help relieve it. I have been so all mighty tired this last week or more, I kept falling asleep in the chair while Judge Judy was on. I had a 2 hour nap on Tuesday because I was so beat – it helped some but at least now I am doing better at this moment.
I had my first Tai Chi lesson last Sunday while Eddie was at the Museum of Flight. We met in Des Moines at a small grassy area near the pier – not as quiet as I thought it would be. But I just decided I was going to work on it and if people thought we were a bit nuts, that was their perception. The first 15 minutes or so was some explanation, then he taught me the “Preparation”. It is the warm up to the form. I have to admit, the warm up is a bit like patting the stomach and tapping your head. I don’t know if I have quite gotten it, but Ron said even if I get wrong, it will still give me benefit. For the last few minutes he taught me the beginning of the form, two sets of movements. It looks easy but not as easy as I thought. So I have something to practice and I may do another lesson next Sunday on his day at the Museum. Not sure what I will do long term.
Yesterday I did something for me, I spent the day with my friend Charlotte. We met at University Village and wandered around Paper Source because we both like it and found some wonderful things. Then we had lunch at Blue C Sushi – what a busy place! The Friday before labor Day weekend is probably not the best time to go because we both had to twirl around the parking lot to find an open parking space. It was a lovely day in the 70;s and we talked non-stop about everything but what is worrying each of us. It was a great break for me and for her.
Nothing earth shaking happened, it was just an upsetting and difficult week or more and I didn’t want to unload on you. I ran across this cartoon and thought it really made a very pithy point.
Gift of RA 
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