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Date Joined Aug 2008
Total Posts : 431
Posted 1/2/2009 8:33 AM (GMT -7)
I thought maybe I need to create a new subject so that we don't get off topic in the other email.
Thank you for your response.
I get aggravated to all my doctors. they don't pay for the gas in my car, and they have no idea how hard it is for us to sit in their lobbies, while we wait for hours to see them, and when they want us to go for the tests for this and that thing, while they ignore the symptoms. I can do two doctors each month, and if they want tests, that is two more trips. And if all this rheumy does is tell me how sick I aint, because I do not have all 11 of the symptoms of Lupus, then what good is he?.
I appreciate all the disability payments that I get, and i appreciate medicaid and medicare, but they just do not realize how hard it is to live on the small amount of money some of us get.
I also appreciate Plaquenil, but I can get this from my regualar doctor.
I do realize and understand the diagnoses that is required by some insuarnce companies. but I do not have that same kind of insurance.
One of the question asked me by my rheumy, was "How long does it take you get not stiff?" I don't get stiffed. What the *&%^ is stiff. I have pain in the mornings. worse when i get out of bed, when I sit at my computer it is very painful, and hard to get up off the chair, can't go up an down stairs, etc etc etc. He is using a word that some other patient used, and eliminated me as a Lupus patient because I am not stiff. I can raise my arms above my head, but it hurts.
I am thankful that they diagnosed me with Sjogren's. I would not have thought to tell my doctor that I have very dry eyes that hurts my vision. Nor would I have thought to tell him about
the very dry mouth and very dry skin. But I had mentioned to my eye doctor about
my dry eyes. they told me to get some otc eye drops. but the blood test tended to alert
the eye doctor, not my voice. Not my telling them that I have this or that symptom.
If not for the blood test for Lupus, there would not have been other symptoms that I could tell to the doctors. But my doctor did not help me with these things. all of you taught me this.
Ok. I have ranted and raved enough. It is sure good to talk to all of you. Hope the new year will find you good things. We could carry this card or ID bracelet, that the blood test were positive, and it says we do have lupus symptoms, and these are the things they need to concentrate about
us. we need to tell the rheumy that his pledge for this New year reslotion is to listen better and not assume that they know what is wrong with us, even if it disagrees with what we say.
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
aspirin, multivitamin, Arthrotec , Meclazine , plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid, Amlodipine, Crestor, Lasinopril, Plavix, phenagrin, Restasis
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Date Joined Jul 2005
Total Posts : 5403
Posted 1/2/2009 9:25 AM (GMT -7)
(((((((Hester)))))))) All of the doctor visits and the traveling and the run-a-round can be exhausting and frustrating. One of the biggest challenges that most of us face is finding a doctor who will truly listen and look at the whole picture, not just labs alone. First of all, you don't have to have all 11 of the diagnositic criterea for lupus, just 4 out of 11, so I'm not sure where the rheumy is coming from on that. It took me almost 3 years and my 3rd rheumy to find one who I really like and is treating my symptoms.
I have noticed that I am worn out enough from appointments for me and appointments for my son who has juvenile arthritis that I haven't taken time for the more routine kinds of things like regular dentist appointments and yearly physicals, etc.
I'm not sure if you have seen a different rheumy yet for another opinion, but it might be worth a try. If there is a local lupus support group in your area, you could go to a meeting and ask the people there if they know a good rheumy. You can check the lupus.org site for local lupus chapters in your state.
Hang in there - a lot of us can relate to what you are going through.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears
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Co-Moderator: Lupus and CFS Forums
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Date Joined Sep 2005
Total Posts : 2573
Posted 1/2/2009 11:01 AM (GMT -7)
Hester, I am so sorry you are going through this. I know how frustrating it is to be told that you aren't sick when you are. I still remember having the butterfly rash so prominent that the nurse and medical student both commented but the doctor said what rash I see no rash. Or how about
the day the doctor informed me I was changing my lab work with my mind so he was going to ignore my labs from then on. Lovely attitude isn't it? I had given up, I was seeing 1 last doctor for my husband's sake but figured it would be the same as it always was. Instead she looked at my history, looked at my pictures, and looked at me with my joints so swollen my hands were useless and said I had lupus. She immediately began treatment. She has been wonderful ever since filling in when I couldn't find a pcp right away and saving my life quite literally several times along the way. I would look into trying a different rheumy if I were you. The doctor makes all the difference. I never wait hours to see my doctors, they are all aware that I cannot handle that physically and I will leave if I get too fatigued. I rarely wait even half an hour. I really wish that you had better doctors. I hate it when a doctor ignores me when I tell them something. Also stiff is exactly what you describe as being a problem in the morning and when you sit at the computer- movement is impaired to a different level with each person but the pain intensifies too. Stiffness is more of an RA thing to the best of my knowledge. Wish I could help more.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept
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