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Thread: My Turn

  1. #1
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    Default My Turn

    I guess it is my turn to gripe and complain. I have been feeling worse the last 4 or 5 weeks. Worse fatigue, worse pain, worse malar rash, mouth ulcers, pleurasy. I tend to blow it off, with a 'I'm having a bad day, tomorrow will be better' excuse to myself, but I did finally call the rhumatologist. He wanted to see me as soon as possable (got me in 3 days after I called :shock: ), so I went in today. He ordered labs, stopped the antibiotic my dermatologist had just started a week ago, and prescribed nortriptyline to help me sleep. I know he is listening to me and trying to help, but it is a bit discouraging when I tell him that my body aches all over when I wake, and my joints hurt throughout the day and all he does is move them, and look at me like 'they still work, so what is your problem?' Is it too much to as that he just listen to me complain, then say all you need to do is (whatever), then everything is all better. All I want is your basic 5 minute miracle cure. Crud, I guess it is back to reality for me. OK, there is my whaaaa I don't feel good rant. Now, I know I have to live with this, and live is what I intend to do. I have not had to worry about the sun ( what little we have seen of it ) since it has been so cold, that I send as little time outside as possable and most of that time is inside the barn. However, spring is soon upon us, and I am going to have to change my sun loving ways. I get the sun block thing, got to have it, got to use it. But, I am allergic to tons of perfumes, and cobalt ( which is found in many cosmetic products ), so I have been avoiding trying anything new, but I need to find one that will work for me. My big problem is clothes. One of the things I hate about winter and the cold is all the big bulky warm colthes. I can't wait for it to get warm so I can shedd all those sweaters and coats for shorts and tee shirts! I just cannot get my brain around a 'you have to cover up and avoid sun exposure' attitude. Any suggestions? I keep tying to envision some light loose clothing that will not be too restrictive, or hot on a nice warm sunny day, but will protect me from the sun, but I keep coming back to shorts and tee shirts. Today I am really hateing Lupus!
    Laura

  2. #2
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    Default

    I'm in Kentucky - I think we probably have similar muggy, humid summer days when the thought of a lot of clothes is just miserable. The problem is that a loose woven fabric lets in too much UV, so it's not really as much protection as we need. I found this out the hard way on a trip to Florida - the sun went right through my long-sleeved thin cotton shirt the first day and ugh, I was sick as a dog for the rest of the trip. Now I wear sunblock all over and long sleeves on top of that and a wide-brimmed hat. I have a lot of allergies too, and can't wear most synthetic fabrics. I've found that a linen and rayon blend works pretty well in summer - the weave is tight enough to protect, but not so hot that you suffocate. And if the sun is really bad, I may carry a sunblocker umbrella too - dorky-looking but effective. I have pretty good luck with the Clinique brand of sunblock - I like the CityBlock 45 - so far it's never broken me out.

    I wish your doctor could find the Five Minute Miracle Cure - wouldn't it be nice? If he ever does come across it - please share!

  3. #3
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    Default Miserable in Ottawa

    Oh Laura and Marycain,
    I know what you mean. I was lying in bed today thinking.....when they say there is no cure they really do mean it. I guess it took awhile to sink in for me. It really is crazy that there have been no new approved treatments in 40 years. I have this feeling that something big is going to break through in terms of lupus meds in the next year or 2. I know the approval process is long and tedious but a breakthrough is a breakthrough and I have this feeling we are all due for a big one.
    I like Avene sunblock and face products. Am sensitive to perfumes too but luckily not so much to the sun so I haven't had to cover up as much as is normal for lupus.
    Keep hoping for the breakthough.....we are due, we really are.
    Karen
    PS - when I am feeling really poorly and lying in bed I visualize myself as healthy and glowing happy with thick long hair and I just think about how perfect the world would be to have great health or even good health. Thats all it would take now for me to be ridiculously happy. And maybe just maybe if you picture it long enough you find a way to make it come true.....

    Or you figure out a way to live well despite it all - which I think we are all doing a great job with. And it is so great to have each other to help with the fight....

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