In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
I was one of the people who talked about cutting the grass in the sun and being sick for two or three days after. I have never had the rash on my face as most of you describe it. My face is more red sometimes, but I don't pay alot of attention to it. I pay more attention to the sickness for the 2 or 3 days after cutting the grass. The only rash I get due to the sun, requires prolonged exposure to the sun, whereas the sickness starts almost immediately. the rash that i have due to the sun, is on my arms and shoulder, and it has these little red bumps on it that scab over sometimes, but they are tiny. and there is a thickening of the skin in this area also.
Today I am not physically able to cut the grass anymore, but still get the sickness just being out in the sun to go to the doctor or to pay bills. but it isn't as bad as when I used to cut the grass. Just a little sick, relativey speaking.
I have two doctor appointments coming up. ONe on the 22nd, and the other on the 23rd. I have to cancel one so that I can go to the other. My rheumy is on the 23rd, so have to cancel the heart doctor on the 22nd. Because just going to the doctor causes me to be out of it the next day. exhausted, unable to do things. It could be partly stress I guess. I made four wrong turns trying to get to my doctor's office the other day. i know the way, but for some reason I kept missing the right turn. Probably not paying attention to what I was doing.
Hope your day will be good to you
Thanks Rosie, that helps. And I had to smile when you said the flourescent lighting just makes you want to flee.....actually, I wanted to slap the desk and shout "now that's what I'm talking about!!!"
I'm just trying to figure all this out - and will start paying more attention. If I'm in the sun, I'm usually walking or doing some light yardwork. If I feel crummy later - I have always thought that I either walked too far, or expended too much energy, because without a pronounced rash, I was making no connection to the sun time. Same goes for flourescent exposure....even though a trip to Lowe's or sitting in the doctor's office, or the like, more often than not, zaps me - I never connected the dots to the lighting, because, well, no rash. And winter seems worse,when there is less sun - so go figure.
I guess I'll go back to journaling the details -so tedious - but easier than trying to remember when/what you did/felt whatever it was/is. *sigh*
Thanks for the help!
Hi Serina - Thanks for your post - it really turned on a light bulb for me. I just mentioned the Dr. visits to Rosie, as something else that seems to zap me, so it's funny that you mention your trouble with that, too. Do you think it might be sitting under the flourescent lights in the office/waiting room?
I did get the rash you described once when I visited my mom in AZ last year, and actually laid out in the afternoon sun, trying to up my Vit D - but I figured my skin was just dry. Even after I went into a bad flare. I just didn't know that much about lupus. I also just experienced some red bumps on my cheeks after sun exposure - and already in flare - while we were on vacation last month. But nothing like the picutres of malar rash that you see online. My face is just generally red, too, and dry - fair skinned redhead - so I've just gotten used to ruddy, splotchy skin.
Anyway - thanks for an extra piece to the puzzle! Hope your doctor visits go well (without long waits) - hey! Maybe that's why I feel like I can't get my thoughts into actual speech very well when I'm at the doc's - by the time he shows up those darn lights have already put the hex on me!? Oy!
You have a good day and take care,
Hi Hester - I just love what you said about being blind with our eyes wide open! It's so true, so often, because we just simply have too many things to be factoring into the equation! That's my story and I'm sticking to it ! I'm glad you made a connection, too - it's all because of your thread about mowing the lawn - bless you!
Did your dx for Sjogren's come from blood tests or did you have a lip biopsy? I hope you don't mind me asking. My rheumie was pretty positive I had Sjogren's despite testing negative in the bloodwork - so she had me do a lip biopsy - which also was negative, but then she said there could be false negatives! So I'm guessing she still isn't convinced - I certainly have all the symptoms.
Have a great day !
Thanks, Hester. Figuring this AI stuff out is like being a mouse in a maze. A confused mouse. Lucy
Rosie you certainly are a wealth of information.
you won't believe what I have been doing for a long time. Using shopping carts as a walker. I don't get the ones in the parking lot, but do get one outside the store, and I told the kids I need to lean on it. and it helps.
I fall easy too. Have fallen down my steps outside several times. Now I have banisters to hold to and it is not so bad. I am so unbalanced. I take meclazine for te vertigo, but I still get unbalanced. It is like my mind doesn't read depth, or something. today I was walking to the parking lot and was watching peripherally and it looked like the white line was coming up to meet me. for a second I thought it was a car. Have no idea what this was.
I am going to get some of that Rit Dye if I can find it. that would be really good to have all my clothes as sun blockers.
You are also right about my grands. They would help me if they knew what the shirt was for and the umbrella. I lost my unbrella. I need to get another one. they are only a dollar at a mighty dollar store that I go to sometimes.
I look forward to not needing that shopping cart as a walker. I have gained back two pounds that I lost, so the meds are working. I lost twenty pounds while I was so sick. Today has been a really good day. more energy, more motivation, and got more things done. I don't push it though. don't want to do anything to trigger another major flare. It was the worst one I've ever had.
Thank you Rosie for all your good advice. Probably can't get the fishing shirt. too expensive at the moment, but I can afford a box of Rit Dye
I have been neglectful of my own walking, an exercise that I used to do with my daughter. Afraid. I am afraid I will get halfway around the track, and not be able to get back to my car. Or start walking around the block and not be able to get back home. But I can do that crunch thing at the computer or elsewhere, in relative safety. And it is really easy to do, even when I am typing.
I can totally relate to the fear factor! I would get overzealous after a flare and find I had walked too far and suddenly feel like I couldn't take another step, let alone think I could make it back - terrible feeling - even with my husband along who could run home and get the car - I would feel so bad I was afraid for him to leave me to do it! Then a back injury inserted itself. Physical therapist called for walking - which I love - and WANTED to do it, but sometimes that pain would kick in and even if I was only two driveways away it felt like miles. It eventually reduced my "safety zone" to nil. I didn't have a cell phone either then, and Rosie's right about the confidence factor it provides. The anxiety is no fun.
And I did the same sort of slow baby steps to get back to walking. Each day depends on what I feel up to. And I decided to stop feeling bad about how little that is some days. Some is better than none. I'm not much for stretching - the fibro doesn't like that very much, and I have to be very careful - but I'm taking baby steps with that now, and the crunches that Rosie suggested. I know it is very true about the our core being so important - giving strength to all our other parts.
So I'm with ya, Hester! Working it a little at a time. Even my physical medicine doctor told me I have to recognize the baby steps as being progress. Maybe not as much as we wish for - but progress all the same. I always think of the Tortoise and the Hare....
Have a good day!
And welcome to the Forum. I'm sure others will have some good answers for you. I have just been asking about the same issue - and it seems that a rash is only one element. Some have it and some don't - and it can present in lots of different ways, from mild to pronounced. I'm glad for your thread!
Post Edited By Moderator (Lynnwood) : 10/14/2008 8:31:20 AM (GMT-6)
Welcome to the forum. I do not have the rash on my face, but my face is red. The redness does not cover my nose however, so I do not have the butterfly rash that many speak of.
Hey Rosie, Lucy
Sometimes I can walk to the mailbox and back easily, and sometimes I can't. It helps to walk on level ground. Up hill is much harder, and downhill can be hard too.
I have a neighbor however who is recovering from several heart attacks and a by-pass, and she walks slowly every day. i might call her and start walking with her if I can. She has a cell phone I think.
I certainly do want my circulation to be good.
I can't sit or stand for long amounts of time either sometimes, and other times I do ok. Yesterday was hard because I had to go get my grandchildren who were stuck on the side of the road with a flat tire. Didn't think I was ever going to get home so I could lay down and stretch out.
thank you for your responses,
Hey Hester - A walking buddy is just the ticket! - especially someone who is building up strength as well, and understands how some days are worse than others. I really hope that works out for you! There was a post that mentioned a "walking video" - I'm going to check that out, too, for those winter days that are on the way.