So.
I've been hopped up on lots of prednisone recently in my doctor's effort to get my lungs to behave themselves. But I've tapered back to my pre-asthma dose over the last several days, and I have to admit that I kind of miss the yippee skippee kind of feeling that 50 mg/day of prednisone can induce.
And now it's gone.
I feel this strange kind of slow-motion thing which is different from being fatigued or brain fogged. I don't feel exceptionally tired. I'm really glad that overall I breathe better. I am relieved that carbs and sugar just don't taste as incredibly addictive now that I'm not taking as much prednisone. You'd think that with all those positive experiences going on that I'd be happy as a clam. But I feel kind of subdued, and anyone who knows me also knows that subdued is not a normal state of being for Julia.
Instead, I feel kind of deflated. I feel like I did when I was a little kid on the day after Christmas.....I loved all the hoo-rah and didn't want it to end.
I'm not complaining, really I'm not. Sometimes the whole steady-as-she-goes feeling is not a bad thing. It beats the heck out of the dang-I-just-can't-get-enough-air feeling.
But steady-as-she-goes is not the same as hip-hip-hooray-I-am-breathing-perfectly-normally, either. As my prednisone dose has decreased, some of that wheezy cough has crept back, just nasty enough to make me remember what a full fledged asthma attack felt like. A reminder that no, it's not all better, or all gone. Rats.
Hm. Maybe the damper on my spirits isn't really due to a decrease in prednisone. Maybe it's this reminder with every cough that Sjogren's syndrome is a progressive disease.
A progressive disease.
Hm.
I wouldn't call this progress.
3 comments:
I've found this summer difficult to deal with. I've had increasing joint pain, lighteheadedness and neurological problems with chemical sensitivities, and severe fatigue. This has not been helped by the hot, humid, muggy weather we've been having, where it's difficult to stay outdoors because it's difficult to breathe.
It's discouraging, to say the least, when you watch other people enjoy themselves outdooors.I notice, now, that when the sun hits my skin, I feel a burning hot sensation, along with itchiness. I've really noticed the changes this year because I'm more aware of sjogren's, and it's making my life miserable constantly trying to cope with the different symptoms that are cropping up, or worsening.I'm hoping this is a little crisis I'm going through and I will see some improvement when the colder air hits. How have you coped with sjogren's all these years? How do others cope?
I have found this summer to be a challenge as well. It has been really hot a humid this year, great for the pool but not so great for me in long sleeve T shirts and long pants. We took the kids to cedar point in sandusky and marineland in niagara falls for day trips and both times the vasculitis on my lower legs appeared on the drive home despite all the precautions I took. It faded away after about 5 days. I've been really achy and just feel like parking myself on my covered deck with a cold drink and a good book while I watch the kids in the pool. I've had the air cranked up to keep the house at 78 degrees. When hubby retires I'm contemplating a move to Newfoundland where it is overcast and cool or cold most of the year. And it has great kayaking, which is very important. Southwestern Ontario is way too steamy.
Hey Sue, I'm from Montreal, Quebec, and the weather has been truly difficult to deal with. If you have vasculitis, do you also deal with Raynaud's, or are they two different things altogether? I don't know where one could be comfortable living as hot weather is uncomfortable, but I have great difficulty with the cold damp winters, for along with the arthritic problems the Raynaud's symptoms kick in. I also have to find a comfortable place to retire in...not too hot, not too cold, not too damp, not too dry....ARGH!!!
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