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Medical Forum / Diseases and Disorders / Lupus / March 2007Asking for advice from my Friends.
Okay...Friends...Most of you know I don't have lupus, but found you all a few years ago when self dx myself and ran across this group and fell in love with all of you and just started hanging out...cause you all are great...turns out I just suffer FM and OA...So I am very lucky... But I have a neighbor...who has lived across the street from me forever, but whom I have just made friends with the last year and half..I am bad... I am now asking for some advice and opinions... She is a Latin American from Houston TX...She is one of 14 children. 52 years old. She has one sister that had Lupus and Kidney failure. She donated one of her kidneys and extended her Sisters life by a year. I think this was about 10 years ago. She has a younger sister with Lupus and has just been dx with Graves Disease. She had one brother with Cancer of the Thyroid. Rose is not one to complain, but she has been having alot of problems with joint pain especially in her hip and back...and she also covers up when she is outside. With long sleeves and a hat...Her sister that has lupus told me yesterday that Rose does get a rash when she is outside in the sun. Rose also had a doctors appointment yesterday and when she got home, she shared with me some of her information that she had from a couple of years ago. They had found a mass in her left pelvic area and done a bunch of test and Blah blah blah...but then the doctors just sort of dropped it, but I think what happened is SHE just dropped it... I noticed that they had sent her to a Rhuematologist and her ANA was Elevated. I told her that would be an indicator of Lupus especially with her family medical history. The doctor wrote in a report all about her joint pain and elevated ANA and family history...Then said that he didn't think she had Lupus????? I asked Rose about the rash...And she said that the sun made her bones hurt...I just shook my head...she said that yeah she got a rash if she didn't cover up and that is why she always wore a hat and long sleeves... She speaks very good English...But growing up in a home where Spanish was the only lanquage spoken...She is kind of inbetween...She doesn't always understand exactly what she reads or interprets exactly what people say...I intend to go with her and speak for and with her from now on...She has grown daughters, but she doesn't want to worry them... The doctor she went to yesterday is going to follow up with the Pelvic mass and do CT and MRI as she is having alot of pain there. She had a Hysterectomy many years ago, so it isn't a gynecological problem. Okay...I don't know exactly know what I am asking...Opinions I guess...Oh and one other thing... She had an MRI on her back, hip and they said it was Arthritis and they gave her a set of 3 shots in the Back...Which hasn't helped, but made it worse. I am not sure if they were the epidural or if they are cortisone. And I know she has been taking prednisone off and on over the last 6 months...If they tested her now, would that effect her ANA levels. Her Sister sees the same Rhuematologist that I do and I may try and convince her to see him also... Thanks again Cindy Aww, Cindy, what a great friend you are. That's so sad. Not that you're her friend, but her plight. Any way she can go to her sister's doc & get rid of the nut job? Given her symptoms & family history, she really needs to see someone who will help her. The photosensitivity should have been a BIG tipoff, especially with her nationality; her skin isn't prone to burn & some docs don't get the distinction between a burn & a photosensitive reaction. She really needs to see someone else. God bless her for helping her sis, but it sounds like she may need that kidney in the future. Graves disease is autoimmune also, & those diseases tend to be hereditary, be it Lupus, Rheumatoid Arthritis, MS, Graves, intersistial cystitis, I could go on. If you have a family history of autoimmune diseases, you're much more prone to developing any one of them. Candi > Okay...Friends...Most of you know I don't have lupus, but found you all a > few years ago when self dx myself and ran across this group and fell in [quoted text clipped - 62 lines] > Thanks again > Cindy Thanks Candi, I have been here long enough to know that many of you had a long road to finally being DX....But I couldn't believe that her doctor just blew this off so easily... I mean...I would think that the bells would at least have gone off enough for him to say..."Okay...there is a possibillity...so let's keep an eye on it..after all..you can't afford to take any chances...and if you should have Lupus...we would need to start treatment right away..." Or am I wrong? I wish I had an appointment with my doctor soon, but my ck up isn't until July...But her sister sees him next month...I might just go with her and see Dr. Willis then and ask him about it... By then...I should be able to see if this other "new" doctor is going to do anything for her... Cindy > Aww, Cindy, what a great friend you are. That's so sad. Not that you're her > friend, but her plight. Any way she can go to her sister's doc & get rid of [quoted text clipped - 77 lines] > > Thanks again > > Cindy Sounds like she can really use you as an advocate. If she'll let you go to the appointments that might be helpful. Not even just any language barrier, but you can say the same thing to different people and get a different interpretation from each. Also some info is overwhelming and gets lost. Two heads are better than one. If she's on the fence about seeing the rheumy, push her over! J/K Make an appointment for consultation for her. If you can afford it, pay for the consultation, call it a bday present. She might be worried about having to get insurance refferals, authorizations, billing, etc. If the rheumy thinks it's Lupus he'll call her primary and insist she needs to be treated appropriately. She says she doesn't want to worry her family. But I have a feeling she's leaving out that she might then feel like a burden. Right now she forces her tired body to do her daily things. And her family is used to that side of her. Make sure she understands *emotionally* that a diagnosis won't make her anything other than she is right this moment. And in fact if they understand her limitations neighbors and community will have an opportunity to share with her. Even if it's someone coming in to dust and vaccuum, or bring frozen extras they've cooked... she'll have a little less on her plate. The one good thing in all of this is that she has good insurance through her employer. So seeing the doctors is not a problem... And she will let me go with her I am sure...She always wants me to go with her sister when she cannot go with her...So...two pluses... But like I said, her husband passed away about a year and half ago and so she is supporting her youngest daughter who is in college...and herself...so like most of us who are trapped in that "I have to Work" syndrome..she is...So she is going to have to learn to pace herself and take care..but I don't think she knows the word PACE...hmmm I appreciate all the advice and caring you guys give here...Thanks...you are the greatest... Hugs Cindy > Sounds like she can really use you as an advocate. If she'll let you > go to the appointments that might be helpful. Not even just any [quoted text clipped - 18 lines] > someone coming in to dust and vaccuum, or bring frozen extras they've > cooked... she'll have a little less on her plate. > She has grown daughters, but she doesn't want to worry them... Please tell Rose that her daughters would rather "worry" about her than find out, too late, that she hadn't told them about her problems. I don't want to lay any guilt on her, but she and they would both feel better if they can do anything to help her. --Bill Thompson That is what I tell her all the time...but you know how stubborn we can be...and then there is always that "Denial" thing that comes into account...Like any illness that changes our life style we go into Denial mode and if we don't allow others in...Well then we aren't really sick then are we? Cindy > > She has grown daughters, but she doesn't want to worry them... > [quoted text clipped - 4 lines] > > --Bill Thompson |
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