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Hi D. I really wish you could slow down. There are a few lupies here (myself included) who had to give up great careers and I had a boss who went out of her way to accomodate me. Finally I ran myself into the ground, became very ill, unable to bathe or dress myself and had to resign. Like Ginny said the limitations lupies have are very real. BTW I had co-workers who didn't understand too. I hope things improve for you. I'm sending you lots of positive energy. Love, Butterflake
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, ValtrexLinks: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
Hi D. Nope you are not alone at all now that you have found us. I am in Mid Western Ontario, a tiny little town of 700 , right at the corner of four counties, Grey, Bruce, Huron, and Wellington. I hope you are feeling better.
21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08
D, I think most of us have been in your place at one point or another. Right now, I just am tired of being too sick to do anything. Your post reminded me of an episode of "Dr.G:Medical Examiner". The patient she was posting was a 42 year old lupus patient who ultimately died from diabetic ketoacidosis, but when Dr.G looked at her tissues, she found damage from lupus in her brain, lungs and kidneys. She said that when she sees what people live with everyday, that healthy people should be thankful for their good health. I wish everyone could watch that segment. It made me cry...one because the woman was only 42 and I'm 49 and two, because I have lung involvement and now kidney involvement and am on SSD. I have good days and bad- lately it's been bad and my husband is in the midst of quitting one job and starting another so he's working 5 of the next 7 days- 12 hr shifts so I'm playing single mom and am just not up to it. Wouldn't it be nice if we all could take a week or two off and go off the a place that's just for us? Where people understand this disease and try to help us out? I'm blessed to have my husband, who's grandmother had lupus, so he grew up watching her go through the stuff I am now and how his grandfather helped her so much. He'll come home after working all day and make dinner and do the dishes because after about 4pm, I'm totally useless when I'm flaring like I am now.
And at work....when I was first diagnosed, it got back to me that one of the other RNs was saying I was just lazy, that I didn't have anything wrong with me. Funny how karma works- she was diagnosed with fibromyalgia about a year after I was and I know this sounds evil, but I hope she struggles with pain and fatigue as much as I do. After that experience, I told all my co-workers I had lupus and fibro and some days are worse than others. People were much more understanding and realized that I wasn't just lazy, I was sick. Even RNs need some education about lupus and all the complications that goes along with it.
I think you need to just say "NO!" when all the demands become too much. It's not good for your health and in the end, you'll be only hurting yourself if you keep trying to be all things to all people.
And, as hard as it is, try to blow off those people who grumble about the little stuff (that's actually a big deal to us). It's extra stress o you and that won't help either! Best wishes! Sandy:)