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Q: Bad, Bad Day
asked by: LadyBrannon on October 16th, 2003
Active User, very eHealthy
This has been a hectic week. I am doing *a lot* of lupus volunteer work. The irony? I woke this morning with a whole host of rashes. (take a pick here, I can laugh or cry at this point)

i truly hate this disease and I want to curse it to hades some days. You know?

*sigh* I feel slightly better now. Hugs everyone,
ladybrannon
Embarassed
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Jenn
replied on October 16th, 2003
Experienced User
Ladybrannon
Hey ladybrannon,

i hear ya! I just feel asleep for 1/2 hour. Only problem is i'm at work. I can't seem to get out of my own way these last few days. I don't even have the energy to be on the computer really. I just want to go home and go to bed. I also have a migraine thats brewing.

My sister in-law is on her way into town to visit me and my hubby but I just don't have the energy. It's unfortunate because she has travelled 5 hours. Sometimes I hate telling people i'm too tired. I think sometimes they don't believe me.

Blast this stupid disease. Evil or Very Mad I just want one day out of 365 to be normal Exclamation

jenn Cool
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LadyBrannon
replied on October 16th, 2003
Active User, very eHealthy
I hear you, jenn!

I know...I, too, sometimes feel like people think I am lying to get out of something. One of the reasons why I started to insist that most of the "dinner parties" take place at my house. Then, I can get them ready, feed the guests, give them something to do (movie, xbox, game, crafts, whatever) and if I am having a bad night, I go to bed! Seriously!
This helped a lot...The people could still come over, but I could go to bed, and rejoin later if necessary or not at all.

Also, people began to realize that if I was leaving my *own* party, I probably was *not* faking it.

Hugs,
ladybrannon
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Gattuch23
replied on October 16th, 2003
New User
I Can Relate!
I am still undergoing testing to determine if I actually have lupus or not, it is looking pretty promising at this point. I know exactly what you mean by wanting at least 1 day out of 365 days to feel normal. Doesn't haven't to be great, just normal. No pain, no headache, no rashes, feel alert and awake, have energy. I don't think 1 day is too much to ask!
Right now I am in early stages of a cold, and it is kicking my @$$ already! I know colds are annoying and can make you feel less than your normal self. But not this bad! I feel as though another day and I will be bed ridden until it is gone. I am so weak and tired, I can barely make it through my work day.
I feel like such a whiner complaing about all this, but this seems to be the only place that people would understand where I am coming from. Friends and family just think I am hypocondriact (spell?). Everyday it is something and they think I make it all up. I know there is something wrong with me and I am almost hoping that I do in fact have lupus. Just so I can say, "see, I am not making it up...I really have something wrong with me". But at the same time, I hope I don't have it. I mean hearing everyone's stories and dealing with what I go through everyday. If this is to progress throughout life, I don't know if I can take much more of it, especially if it can only get worse.
Well enough complaining for one day, thanks for listening! I hope we all get our 1 day to feel normal! I'd hope for more, but I don't want to push it.

~erin
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LadyBrannon
replied on October 16th, 2003
Active User, very eHealthy
Erin...We hear you, dear! Trust me, I did not know, when I was formally diagnosed, if I should cry or go to all my friends and family and go, "see, I told you...." *sticks out tongue* I almost felt childish, but relieved, very conflicting feelings. So, I do understand when you say that you almost hope it is lupus...

Keep us up to date with your diagnosis...And if we can help, let us know. Also, remember if it is lupus (or any other auto-immune), there is a good chance that what would be a "little ole' cold" to someone else is *not* to you! It can make you very ill...Flares can be triggered by colds, flus, viruses, etc. So take care of yourself!

On that note to everyone else...Even if you are *not* allowed to get the flu shot...Tell everyone else in your family to get it!!!!!!! You do not want someone bringing the flu in on you!

Hugs,
ladybrannon
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