I just feel awful...

[RainyDayDisease]

I was diagnosed with SLE when I was 17 years old, its been an off and on battle. I seem to get better, then worse, then better.. and so on. I always keep these symptoms though: Sensitivity to light and extreme fatigue. Recently my fiance asked if I wasted to go to a Christian concert this May, I said yes. I found out recently that it is 3 days long (about 12 or so hours long each day) and it will be held outside. I almost started crying just thinking of standing outside in the Florida sun for hours on end. I didn't want to ruin the concert for him and my friends who were also going so I didn't say anything.

Well today I told him I didn't know if I could go... I didn't want to risk provoking a flare just for a concert. And now I feel awful because the plans are off. I've ruined this trip for my fiance and my two best friends, they were all looking so forward to this and now I feel like this huge burden.

-Jess


p.s. - Also soon i will be getting married, I won't have the same insurance and I am not sure if the insurance I'll be on will pay for my rheumy visits and my medication. I am on plaquenil right now, what should I do?

[Christine UK]

<span style="font-family:Comic Sans Ms"><span style="font-size:12pt;line-height:100%">
I was dx when i was 17...and yes its very hard indeed.
you will have up times and also down time...
you have to adjust your lifestyle from time to time....its just not worth being laid up ill.
I am now 40 something ! have a wonderful husband and two beautiful children....
listen to your body....and stay positive. style_emoticons/<#EMO_DIR#>/flowers.gif </span></span>

[helloos]

Hi there.

I know exactly what you mean. Unfortunately those feelings are normal but I think yes, your health is more important and that your fiance would think so too.

As for the insurance, do you know which one it is? Most insurances are on line and you could search your doctor and meds to see if they are on it and the coverage.

[pauline1946]

your health comes first.
stay out of the sun, or you may be to ill
to get married.

think of the outcome before you go with them.

[Rene]

Sometimes the guilt thing is so hard to bare!!! I feel it so often,but to give up the concert was the Best thing to do! I live in Florida to. It is way to HOT!! It is not worth taking a chance on getting worse!!I have a 9 year old son and I can't take him to most of the theme/swim parks in the summer. This year I have insisted that my husband and he go because I do not want this disease to steal from them too. My husband is sweet and he doesn't like to go to those kinds of places without me. But I explained to him that I want him and my son to enjoy life and that even though I would miss not being there style_emoticons/<#EMO_DIR#>/sad.gif they have to do things without me!! I hope that he will listen to me!! style_emoticons/<#EMO_DIR#>/smile.gif We just have to find ways to deal with this stuff and believe me it is not easy as I am having a difficult time myself lately!! Hang in there and try not to be so hard on yourself! We have so much to deal with already!! GOD BLESS!!!!!! style_emoticons/<#EMO_DIR#>/biggrin.gif