What is Lupus
Systemic lupus erythematosus (SLE or lupus) is a chronic, potentially debilitating or fatal autoimmune disease in which the immune system attacks the body's cells and tissue, resul...
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I dont understand family/people
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Hi my friends..Im really behind in reading posts and responding because I have been under the weather lately. Getting that stomach bug and the pred. wreaked havok on my body and I am just not starting to feel better. Of course, I had to go back up to my 10mg of prednisone so my tapering failed once again. This time, it caused me to have prednisone psychosis which was horrible.
Anyways, this is not what I needed to vent about. What is eating me up is how rude and inconsiderate your own family can be when you have clearly made a point of how important something is for your own wellbeing/health. Im so ticked off at my sister right now. I dont want to fight with her but dont know if I should say anything to her (AGAIN)Everyone in my family knows that I am immuno compromised and have no immune system from the drugs I am on. They all know I am freaked out about getting sick. I just got over being sick and having to have 2 bags of fluids at urgent care. They know I get everything that comes within 20 feet of me. So, I saw my sister on Thursday. I was suppose to go to her house for a halloween party and to trick or treat in her area. TONS of kids and Im going to be honest. I was so freaked out about being around all the kids/people at the party that I lied and said ryan had a fever so couldnt go. Sun. I was suppose to go to my cousins party where my sister and tons of other family/friends were going to be there but because I had said ryan had a fever, I got us out of that one too. Something just told me not to be around all these people. Well, guess what? My sister is sick today with a respiratory infection. She said she had been feeling under the weather for a few days but started to get really sick yesterday at the family party (that I didnt go to). Basically, she kept this from me...that she wasnt feeling well and would have had me around her halloween and yesterdays party without telling me she didnt feel well. When she told me this, I couldnt believe it. She must hate me and enjoy that I am sick or get sick because why would she NOT tell me she wasnt feeling well and to stay home? She has done this before when I wasnt nearly as immuno suppressed as I am now. When I said, "Thank g-d I wasnt around you" she said nothing. I dont trust anyone to help keep me healthy and safe. Of all people, my sister knows how distressing it is for me to be so immuno suppressed and how much I worry about getting sick. I want to just scream at her at how inconsiderate she is. She had my mom over last year when she was sick. Didnt tell me, told my mom to come over anyways, and I got sick. They all know how easy I get sick. The kicker is that my sister is a hypochondriact who freaks out about every little thing and she is perfectly healthy. I really cant trust anyone which is why I dont want to be around people or my family right now. They clearly dont get it. To top it, as sick as she is she is still running a couple of errands that she claims she has to get done, only to spread her germs to everyone else. Am I missing something? Am I over reacting at being upset over this? I dont know if I should email her as it will really do no good (she never does anything wrong) but I needed to tell someone just to get it off my chest. I would NEVER put anyones health at risk knowing they have health issues let alone my own family. This is so typical though. Mind boggling to me. I will end now because Im working myself up and I could go on and on. I give up.... Thanks for being my ear and venting venue...Dont know what I would do without you guys. Hugs to all Melissa Posted on 11/02/09, 04:11 pm |
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The note on my door works! People have really gotten the message...not sure about making up a T-shirt for the winter cause up here in Canada it is the land of ice & snow for so long that a T-shirt would not be warm enough....LOL...therefore I will make a polar bear fur lined robe then have the message embroidered on the back of it...LOL...in all seriousness though...most people are being a lot more careful now specially with the spread of H1N1 but once flu season has passed then I am afraid the cautiousness will dwindle to just us immune compromised folk...I know that I will continue to be vigilant about hand washing & will keep the notice posted on my front door year round! 
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I have heard the masks don't do that much good anyways. They block larger particles but not the kind that get you sick. I just try to make a habit of not touching my face when I am out until I get home to wash my hands. I like the holding your breath idea too, lol.
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hi dont email your sister it will only cause you more stress.that you dont need right now...not worth it...lay back and wait for her to contact you...say how soory u are that she feels poorly right now...and im glad u stayed away while im ill....with my immune problem....im glad you had the sense to stay away from me....and hope your feeling better soon...otherwise your going to get into one hell off a family argument...and poor parents torn apart with both of you...i know siblings..fight..time you both grew up..lozzy
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Hi guys, just wanted to add my two cents. We had a couple that would frequently visit us on the weekends and bring there daughter with them. The problem was that the kid was always sick! Well guess who always ended up getting sick? Yup... me. It was before I fully understood what Lupus could do to your body. Once my husband and I started to understand the effects we asked our friends to let us know when their kid was not well. They refused, well it took me ending up in the hospital getting three bags of fluids into me for us to finally say, no more. Duh! Since they could not respect our wishes we had to cut off our friendship. I have been terribly ill for the past three years, getting progressively worse, praying for the day that scientist either find a cure or my doctor comes up with the perfect cocktail. Until then I wear a mask in the subways, use gloves, wash my hands constantly and will have the nerve to ask my guest to stay home if they do not feel well. This is the first year we did not celebrate Halloween because my husband was concerned about my being exposed to H1N1, my husband turned off the porch light, we snuck out the back and went out to dinner. I was exhausted the next evening but it was nice to have a date night. So I learned the hard way, I advocate for my own health. Hugs to you all.
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