i am not at all happy

[Guest guest]

I thought when winter would end and spring would begin, it would be

gradual...nope not in South La. It was eighty four today...the first

day of spring...and the sun is closer to the earth now so the rays are

stronger. I went outside for five minutes today to load my truck up

with props that my daughter is to use as the mascot of an arena football

league...I looked in the mirror and I do realize why they call it the

wolf...i looked like a wolf with the red discoid lupus rash that came up

just that quick. I have also had asthma the last week. I have had that

since birth but it had been dormant for a while.

I am very self conscious with the rash...I almost did not go to the

arena football game tonite...people do tend to look at you strange

....and act like it is something they can catch...I usually just tell

them it is lupus and I am not contagious and then I give them a big hug

and kiss...hehe...IDK if lupus can activate asthma...but I am sure as

the sun gets hotter, the rash is gonna get worse on my face, down my

neck and on my tummy.

I sometimes do not even like to comment on my little stuff cause yall

have more involved health issues and mine sound dumb. But I am trying

to learn about this autoimmune disease. My friends will not speak to me

about it...they think it is a death sentence of sorts...and it is

not...so it is hard for me to talk about it with my friends...i do not

want them to pity me, I want them to just be the same to me as they

were when the rash was not there. I am the same chippy...it is just the

outside packaging that has changed a little. that is all...not too bad.

[Guest guest]

Chippie, Oh, honey, I know how it is when friends and family shy away because we appear "different" to them. In my case, the rash is so prominent on my bad days that people ask if I'm

running a high fever. On not-so-bad days, they tell me I "don't look sick" with that "healthy color"

on my cheeks. You just can't win.

However, one way to avoid the rash getting so bad is to slather on sun screen (I use 50 SPF by the

gallon.), wear light cotton shirts with long sleeves that flow (You can use a RIT dye product that

makes your clothing filter out most UV rays.), and wear fashion statement hats. I do it all the time

now, and am getting known for it. My legs are so white they look like raw poultry, but I don't care

about that any more. When it's hot, I wear shorts indoors, slather on sun screen to get from shady

spot to shady spot outdoors, and I can avoid the worst of it. I still forget once in a while, but I am

getting better about this as I suffer so much if I don't take care.

I also garden early in the morning in shaded areas, or in the evening and wear OFF! to keep the

skeeters at bay. I have friends who love to take photos send me copies of sea, land, and people-

scapes that interest me, and I do my drawing and painting when my hands will cooperate, indoors.

You can adjust, it just takes practice. Keep your chin up, honey. Life will not come to an end, and

with your up front attitude (The hugs and kisses part made me laugh.), you will do ok. Loving hugs,

MM

[Guest guest]

I can understand your frustration with the rash ..

it is 84 right now in Orlando.. the last couple of days have been in

the 80's and very sunny.

I found the ONLY way I remember to put on my sun screen .. is to tie

the dang bottle to the door knob!!

I tied a ribbon around the tops of the sunscreen bottles and hung them

from the front and back door knobs. The clunking of the bottle against

the door as I open the door is enough to make me remember to put the

stuff on.

Tomorrow we are back down in the 60's again for the high. Man, I hate

this Yo-Yo weather!!

[Guest guest]

Chippy, that's one of those things I tend to forget too. When it's nasty

in the winter I forget about the sunblock, don't use it then. Then spring

comes and I usually get reminded in the worse way. I am generally sun-ok,

but I do have to watch out. Some summers I'm ok, others I am not. So, I

usually get reminded when I get the rash on my face. I've been lucky though,

usually I don't get it, but doctors warn me that this comes and goes and one

never knows.

Please remember to use sunblock and stay out of the sun even if for a few

minutes. That's all it takes with " sunsitivity " .

Please don't say it is " little stuff " you get. That is not true. I would

hate having visible symptoms. If I can look ok, I can make believe I am ok.

When I definitely see it on my face, that's another story.

Have you tried speaking with your friends and telling them you would like

to talk with them about what it means to you to have lupus. People get

weirdly scared about such disease, especially since they've seen some stuff

on tv or elsewhere but they really don't understand what it means. If they

don't start the conversation with you, maybe you should try starting it with

them. Sometimes a barrier is created because people are afraid to be the

ones to start something. Maybe if you start they'll loosen up.

Good luck.

Mojo

i am not at all happy

...I looked in the mirror and I do realize why they call it the

> wolf...i looked like a wolf with the red discoid lupus rash that came up

> just that quick.