I have spoken of physical pain, the fog that confuses and frustrates, the medications that may or may not help, the procedures some of us endure just to get to the facts. So here are some facts that are rarely heard and often judged by fellow lupies (those who have lupus).
My doctor gave me a fact sheet the last time that I saw him from a medical journal not available to the public, in that report it shows that most of Lupus patients are misdiagnosed many times before finally getting the correct diagnosis. The ANA (Anti-nuclear-antibody) in this article is stated to be correct less then 80 percent of the time, often there are false positives and false negatives. There is no true way to diagnose lupus even though there is a myriad of tests that rheumatologists use to diagnose the condition.
I have had the misfortune of being in the percentage that does not have the "proper" blood work to support my diagnosis for the local rheumatologist to see me. He saw me twice, the first one was a "get to know you" and blood work. All of course came back normal because I was receiving treatment from my GP who at the time was only one of two people who believed I was actually suffering with lupus. When I saw Dr. Marius Racovan the second time he told me there was nothing wrong with me, when I questioned the statistics, he WALKED OUT on me and then followed up with nasty letters to the two Dr.'s that believe I do have Sle and ARE trying to save my life, keep me going and comfortable. I was forced to call this doctor again yesterday after my kidney biopsy shows Lupus Nephritis, his office called me back and stated that it was not consistent with SLE and that I needed to talk to my GP about the letter he sent him saying that I was confrontational and argumentative with him. EXCUSE ME? A professional kidney Dr. says it is Lupus Nephritis (actually 3 do, one from Mayo Clinic) and he REFUSES to see or TREAT ME because I proved him wrong? Yeah, great doctor he is, it sucks that he is the only one in the area as well! Now I have to go to either Mayo clinic and stay there until they are done "figuring" me out or spend multiple days traveling to see another Rheumatologist HOURS away from home.
I used to belong to an online support group on facebook. When I announced that I was asking for a kidney biopsy I came under heavy fire by another lupie. It was her opinion that I was scaring newly diagnosed lupies and that me asking for one didn't qualify me for getting one. Obviously my kidney Doctor disagreed and offered it as an option for me. I couldn't send this person a private message, so I called her out on her attitude in the supposed "support group". I was quickly dumped from the group and after a vote of the admins I was refused re-entry without an explanation. Great support group right?
Its bad enough when people without lupus don't "get me" or when a doctor rejects a person because of lack of labs, but when you are ostracized from a group of people like yourself its a deep hurt that really hurts deeper then anyone can understand. As a consolation prize I was introduced to another group; which is BY FAR better then the original one. The people in the new group are not judgmental at all and I am sure that if I told them about what had happened with the person who put me in there, they would still not exclude her or reject her as has been done to me.
Funny how some think they are better then others and their truths are the only ones that matter, even though we all live in different parts of the country and world! I am thankful for my 28 below family and as far as I am concerned Lola vs Lupus is a clique, only the cool kids get to stay, its like high school all over again and they really need to take a long hard look at what they are doing and how many members have quit participating with them because they are just not all nice people, heck Lola very rarely even participates in the group. How can you run a support group without participation and knowing what's going on? Furthermore, shouldn't administrators of support groups be able to be contacted even if they do not friend new people, maybe they should be required to friend every new person in the group so they can be contacted and get to know the person out side of the group before they make the decision to judge others so quickly and with no explanation.
Again, to my 28 below family, you are great and I am truly MUCH happier in this group then the other one, I don't do cliques well and I love the sincerity of the people in it. Thank you to everyone in 28 below for being so loving, kind, generous and helpful through my difficult times.