I have GREAT news...I think

[Karin1]

Hello my Friends!!!

I have GREAT news. As everyone knows, I'm a newly diagnosed LUPIE...Very sick for 8 years with this horrible illness. Awful scalp sores, painful rashes and blisters, nasal and oral ulcers. Nephritis, debilitating arthritis, fatigue, Pluericy...ect ect ect.

I started on Plaquenil 6 weeks ago, and rather high doses of prednizone (of which I've decreased to 15 mg)..Yesterday we had a day of sun for the first time in weeks. 35degrees outside. I was aching to do some gardening, but was so affraid to go out in the sun knowing that within 30 minutes I break out in lovely sores, and rashes, and the next day ill with flu symptoms and arthritis. So I've been preparing over the last few weeks, I bought some 60spf sun screen, have been purchasing funny looking hats, I even bought one of those sun protective UV blocking jackets. Which is actually very nice.

I know I won't be testing these things between the hours of 11-3...with the uv rays being so dangerous, so I went out in the sun around 9a.m. Wore my sunblock, my hat, and a long skirt, and wore my new jacket. I did 2 hours of gardening. This morning, I have arthritis in my ankles, and knees...throbby and stiff and sore. BUT...NO NEW SORES, NO RASHES, NO MALAR RASH, AND NO FLU LIKE SYMPTOMS!!! YAHOOOOOOOOOOOOOOOOOOOOO... I don't know if its because the Plaquenil is starting to work, or if it was the sunblock, and protective clothing, or a good combination of all those things. Obviously with the arthritis, and a wee bit of extra fatigue...I'm not perfect by any means, but...again..shocked..NO NEW SORES, NO RASHES, NO MALAR RASH AND NO FLU LIKE SYMPTOMS!! I'm just SO AMAZED and SO THRILLED! Is this possible??? Am I going to crash and burn a little later today??? I don't know...but knowing myself and how I normally react to the sun...it all should have happened by now!

It's amazing how such small strides in our health, and how GREAT one GOOD day makes you feel. I know in my own mind that, if I have a good day, and get feeling strong emotionally what glorious wonders that greats in my own mind. I protect myself a little because my hopes get so high, then if I have a bad day the following day how devestatingly crushed you feel.

There must be a small part of ALL of us that have a hidden hope deep inside our own minds that one day you'll wake up and NOT have Lupus anymore.

Just wanted to share my **happy dance** and smiles over knowing some days, sometimes..small wonders do happen.

style_emoticons/<#EMO_DIR#>/woohoo.gif Karin

[flibble]

Just enjoy the good day! I love when those come along. Enjoy! I hope you get more of them! Laura

[Mariposa]

<span style="color:#000099">style_emoticons/<#EMO_DIR#>/goodvibes.gif Hi KARIN,

Your post above just cheered me up today. style_emoticons/<#EMO_DIR#>/shakehands.gif (I've had the blues this weekend)

style_emoticons/<#EMO_DIR#>/Thanx.gif ...for sharing your happy moments, dances, and smiles.

Right now, I'm happy for you too and I'll celebrate it with you by having some ice cream. style_emoticons/<#EMO_DIR#>/wink.gif

style_emoticons/<#EMO_DIR#>/smile.gif Have a nice evening.</span>

[Karin1]

Thanks Flibble and Maripossa:-)

Be nice when we can all celebrate days like this more often:-)

(((hugs)))

Karin

[Clare.T]

I'm glad you had such a good day and feel renewed hope. I hope that the measures you are taking against UVR will prove to be all that you need, so you can enjoy your garden and outdoors more. If you've not been doing much exercise, I should think your joints would be sore and you would feel tired even without lupus.

Maybe I've had lupus too long - it never crosses my mind that I do not have it and anyway, my lupus is very visible. But I do think that there's definite hope for those more recently diagnosed, that with good doctoring, the right meds at the right time, life adaptations and a measure of good luck, lupus will affect you as little as possible. To put it another way, you will be able to live well with it, and in spite of it. That, I think, is a more realistic hope than going into total remission.

I like to think that support and advice from the forum increases those chances, and makes life a little easier for those of us whose hopes of being disease free at this point are more than limited. One reason I and the other old-timers participate here is to help spare others from what we have been through.

Wishing All Well

Clare

[iris.phillips1]

style_emoticons/<#EMO_DIR#>/wavey.gif hi karin.
ive was in hos last week and i came out on fri ive just read your post and its just made my day style_emoticons/<#EMO_DIR#>/cloud9.gif
it really bought a smile to my face im glad you shared that with us style_emoticons/<#EMO_DIR#>/rotfl.gif
you take care and i hope you get plenty more days like today style_emoticons/<#EMO_DIR#>/highfive.gif

[softball893]

Hi style_emoticons/<#EMO_DIR#>/smile.gif



I think that it is wonderful when a person can have days like that too! It does alot to help the spirit!!
Enjoy your day!!







Lots of thoughts,

Liz style_emoticons/<#EMO_DIR#>/smile.gif

[raggedyann1]

Karin,

I am very glad that you were able to have such a wonderful day. I was also glad that you took good precautions for your outside activities. One thing that I have learned is to slowly work into things like you did. In other words I wouldn't do it several days in a row right off. Rather every couple days for a bit and then work into daily activities. I remember when I went into remission that I still had to do things slowly as my body was not physically strong enough to do everything straight away.

So continue to enjoy with caution.

Karen

[Douglas]

I am so glad for you.
I love my wee lawn and conifer garden, even the messy laural leaf willow with it's twisted trunk that sheds everything onto everything.
I could not do anything like two hours, the length of time you were actiive, without suffering horrible joint problems but I tend to do one thing at a time: cut the front; rest; water the conifers; rest; weed; rest. You get the idea. "Sprint and stop" not "marathon" tends to work better for me.