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New Member

Date Joined May 2007
Total Posts : 6
   Posted 5/2/2007 5:53 PM (GMT -6)   
How are you feeling today?? cool   ok, i just need some help and feed back, i don't have Lupus, but my sister does. she cannot walk, she has to crawl most of the time. she can't type or write, she can't see. do alot of ya'll have all these problems, or are we doing something wrong here. she get disability checks cuz she can't work. she feels as though there is something in the room with here sometimes. she'll have a good week, but that's everyonce in a while, we took her down on the cerequil, and she got better for a week or so, then she was back to not being able to open her eyes, and always leaning forward,and crawling now we took her off the cerequil and she got better for a week or so, then the worse happened again, right now we're yoyoing, and i don't know what to do, and my parents look so tired and like there giving up hope. i atleast want her to be stable, and just have bad days every once in while, but right now it's the other way around. confused   oh and to top it all off, now she's having stomach problems!! she can't eat, with out feeling sick. the docs wants us to take her to a stomach specialist. it's just one thing after another. i just want to stop all the meds they have to many side effects. she's been trying to go to collage to become a doctor, but she can't pay attention. she don't know what the day is. she's not really living. she's just there. and that's a problem for her and me. while she's suffering, how can i go out and live. it's not fair!! mad i'll keep you all in my prays too, i feel for you all!! just tell me what we're doing wrong??? sorry sooooo long! sad

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/2/2007 6:04 PM (GMT -6)   
Hi Cassy, There is know way I could tell you what or even if you are doing somthing "wrong". I know nothing about your sisters history. Has she seen many doctors? Do your parents like your Rheumy? It doesn't seem like they are doing anything to help her. But than again I don't know what she has been through or for how long. People can have very different types of Lupus. It sounds like your sisters is as bad as it can possibly be. All I can say is if one doctor doesn't work it's time to find a new one. Maybe somone here can help you I have no answers I just wanted to say hello and I hope for the sake over everyone involved someone can give her the help she needs.

Hang in there
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

New Member

Date Joined May 2007
Total Posts : 6
   Posted 5/2/2007 6:18 PM (GMT -6)   
Thanks for replying!! it may help if i also knew allll the meds she's on, but i can't keep up. they say she do have the worst lupus there is, but i just don't know, we got rid of one doc, now looking for a new rohmentoligist. i'll have to find out some more stuff from my parents. they go to all the appointments with her, i'm usually working. i don't know, i don't think she going to be this bad forever, there working on cures for everything, lupus is right up there at the top, it seems like a lot of people have it. i never heard of lupus til she got it. ok, gotta go watch a movie with her now, or our soaps OLTL!!! lol. atleast that's something to get her mind of the pain. see ya!!!

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/2/2007 8:01 PM (GMT -6)   
Hi Cassy,
   I'm sorry to hear your sister is so sick...((Hugs)). I'm sure it is hard to watch her suffer so badly. It sounds like she definately needs to see a new doctor and a change in meds if she is getting worse and not any better.
   Please update us when you can. I hope she gets some relief soon. She and all your family will be in my thoughts and prayers.
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 5/2/2007 8:22 PM (GMT -6)   
Sorry to hear about your sister.  She sounds serious.  I also agree w/others that she might need to see anothe rhmyt and may be a change in medication. We do not know what medications she is taking and it's hard to tell.  Let us know what happen and feel free to ask.

New Member

Date Joined May 2007
Total Posts : 6
   Posted 5/6/2007 11:48 AM (GMT -6)   
thanks for the prayers mom46 and omega! my sis is walking more, but sometimes she seems to walk better without the meds, of course we know we can't just take her off them, but she's been having stomach problems and have not been able to take her pills right. she sees a stomach doc or tuesday. but last night we had a get together with family and that was the first time she was able to eat anything in along time and still hold it all down.
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