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Old 11-12-2007, 09:27 PM   #1
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Join Date: Nov 2007
Location: Southeast US
Posts: 15
mysobriquet HB User
New here, just need a minute...

I've been getting sick for nearly 12 years now...

So, I don't know why I'm always so surpised when I get sick again. I forget what it feels like until it hits. I forget how I just feel so icky, so tired, like my eyes are boiling and even for my cat to walk across me aches with so much pain. I forget the embarrassment of the raised rash and I forget the annoyance of the ulcers in my mouth. I forget the weird way my eyes feel...

I forget it all... and it reminds me.

I'm luckier than so many people... my symptoms are not yet life threatening... just so annoying and frustrating and bleh. I'm just so tired for a young woman. I'm too tired to date and too tired to be with friends and I'm even too tired to wash my clothes. I come home from work and I put on comfy pj's and I get in bed... I fall asleep before 8 pm, wake up filled w/guilt for all the things I've not done... and end up falling back asleep.

I'm up now, thanks to sudafed, b/c I have paperwork that most be completed for work in the am or people won't be reimbursed for services... but I really wish I could sleep. I wish I could eat too... I have no appetite for food over the last week. I force myself to eat but feel so nauseated afterward... and I only eat around people, at home, I eat a few bites and either throw the rest away or give it to my pets.

Ok, I know I'm writing what you guys already know... I just needed to get it out. I need a journal or something. I'm just so tired and sore and icky sick. I want to feel better already... Thank you for listening.

 
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Old 11-13-2007, 10:55 AM   #2
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Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: New here, just need a minute...

Hi & welcome. Just curious... Do you have a formal diagnosis? Take one of the standard lupus meds? Have regular follow-ups? Avoid sun? Etc.? Or are you still seeking answers & help? Sorry, I couldn't tell from your post & was wondering which *treadmill* you're on, the BEFORE or the AFTER...

I still get tired, despite knowing, taking Plaquenil, avoiding sun, etc. So, either way, I do sympathize! I hope you keep posting here & find that it helps to be part of the group. Bye for now, with best wishes, Vee

 
Old 11-13-2007, 01:17 PM   #3
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Join Date: Jul 2007
Location: ON
Posts: 26
TisJustMe HB User
Re: New here, just need a minute...

Hi mysobriquet,
I just wanted to let you know that you are not alone in this fight. I too am one of those people who come home from work and immediately get into the comfy pj's and sack out... I feel like no one understands because I don't look sick, I only feel very sick and very tired all the time and I have already tried every drug and nothing puts me into remission and only pain pills make me able to go to work and live a semi-normal life. I had a baby 20 months ago against the advice of all my doctors and my family and to make it worse the father left me, has never even seen his son. I feel like the most horrible mom in the world because my son wants to run and play with me when I get home from work and on the weekends and I try really hard to do something fun with him every day even if it is just building a castle with foam blocks but it seems like it's not enough...My son is destined to live the life that I have made for him surrounded by my tiredness and my pain and this stupid disease called lupus. Sorry for the rant, just know that there are plenty of us around with the silent disease that is lupus...

 
Old 11-13-2007, 05:21 PM   #4
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Join Date: Feb 2007
Location: Port Crane, NY, USA
Posts: 137
c57s53 HB User
Re: New here, just need a minute...

I was diagnosed with Lupus (SLE) about 5 years ago. I have to say that I absolutely knew something was wrong when in the coarse of 14 months I started out with neuropathy in my feet so bad I couldn't walk, my legs felt swollen and I couldn't raise them up in bed like to lie in a fetal position, I had 3 different types of bacterial pneumonia that wouldn't leave, bronchitis, asthma (which I had never had before in my lifetime), i had no muscle strength in my legs and finally I got hepatitis, irritable bowel, 2 stomach ulcers had 3 polyps removed, acid reflux.....I was literally sick with fevers and infections for 14 months, and yes, that overwhelming tiredness that was so bad I would cry at the thought of wondering how in the world I could get up to go to the bathroom. Just know that you are not alone and eventually things do get better. I think if you try as hard as you can to keep a positive attitude and just keep telling yourself that everything is going to be fine, eventually it will be. Just know that you are not alone.

Connie

 
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