Hi, my name is PJ and I am newly diagnosed. I now realize I have had lupus for at least 15 years or possibly longer. In the beginning I was one of the fortunate ones. Most of the time I was in remission and when I was having a flare the symptoms were easily written off as too much exercise or the flu.
The in 2001 I was assaulted. The damage done to my body must have triggered the lupus. At first I was told it was the stress of what had happened to me. So I did the standard therapy for that. I relived the experience endlessly with a therapist and took anxiety meds to deal with what was supposed to be panic attacks. Every time I tried to get help the doctors just upped the meds and treated me as if I were hysterical. With time my body continued to deteriorate until I reached the point I could no longer keep going. I could no longer stand, eat or function.
That is when the surgeries began. Once my damaged gallbladder and the scar tissue tangling up my internal organs was gone the doctors said that what was left was pretty much going to be there until things reached the point I would have to have a colostomy. But then the surgeon did not want to do a colostomy for other reasons. The doctors kept telling me that my problems were the mega colon, GERD and IBS combined with stress.
By that time I had been legally disabled for 3 years and I felt that I had gone through every doctor in the area. Don’t get me wrong they were all to ready to give me medicines. I could have opened my own pharmacy. Twelve different medicines, often in multiple doses everyday. I think I averaged 15 hour of sleep a day. I could not go to church or the store because I would fall or faint. I dared not drive. I was forced to wear a diaper. After insurance I ran up $70,000 in medical bills.
Then one day I woke up in the hospital because my medicines had finally gotten the better of my body. I think if that had not happened I would be dead today because it was the wakeup call I needed. I started to really question what my doctors were doing to me. In the end I found out that my medicines basically existed to cancel each other out. One group made my bowels work and the other group controlled the pain caused by the first group. Only the second group created havoc with my bowels. I kept getting blockages in my colon and was bleeding internally on a regular basis. I took myself off all the meds and started really pushing for a colostomy.
I guess I just gave up one day. I ran into one too many of the doctors who decided that because I was a woman and had been assaulted I was sick because I could not cope emotionally. Never mind that the assault was 6 years ago. I couldn’t take the stress of being so terribly sick and having to go through the humiliation of having doctors treat me like an idiot.
Shortly after than I ended up in the ER with a suspected case of diverticulitis and possible perforated bowel. When the doctor told me that my intestines were still whole I almost started to cry. I WANTED there to be something wrong so they could fix it. I had for a long time been praying the doctors would just find it before I died from it. And again there was nothing… nothing but the pain and the illness.
I was lucky. The ER doctor was a woman and she knew from experience how easily we are overlooked and ignored by medical professionals who still see us as the weaker sex. She convinced me to go see a gastro in another town who she thought highly of.
The instant he saw me he started asking questions about a rash on my face. Then he looked at my fingers which were blue as usual. Within 15 minutes he had a tentative diagnosis of lupus. That was 2 weeks ago Monday.
The prednisone is a godsend. It ended all my symptoms. Six years of almost constant rectal bleeding, no bowl control, incredible pain, constant itching, numbness, pins and needles, chest pain, trouble breathing, nausea, vomiting, inability to stand or walk without passing out, migraines, constant infections, anemia… you name it I had it and NO ONE had thought of lupus.
We are still trying to balance my prednisone with the lupus to keep me in remission. I am at 60mg a day right now and still flaring to some degree but I actually can think and live again.
I know lupus is a really scary disease and I should be more afraid but two weeks ago I was sure I was going to die from something that no one even could recognize. The thing is I am so MAD. The doctors chose to define me by one event in my life and because of that they took the past 6 years from me. I know lupus is hard to diagnose but I honestly cannot get past the fact that dozens of doctors had seen me with even worse symptoms including the butterfly rash and they never even thought to ask me about it.
Anyway, that is my story. I guess with time I will learn to be afraid of my lupus but right now all I feel is relief that I finally know what is wrong with me.