Hi. My name is Emily. I am a 44 year old single mother of two boys ages 19 and 14. I have been divorced for 8 years now and was married for 16 years at the time of divorce. I have been ill for most of my adult life and never have been able to get answers as to what is wrong with me. I firmly believe it was part of the demise of my marriage. I was always exhausted and tended to save my energy to tend to my boys which I feel is the only accomplishment I have achieved in my life. I was subjected to being called fat, lazy, etc by my now ex-husband...and began to believe. Over the past 5-8 years, I have developed skin problems, everything from psoriasis to excema and the "butterfly" rash across my face. My psoriasis has miraculously cleared over the past 6 months but the butterfly rash has remained along with an occassional out break of excema. Everybody always thinks I have sunburn on my face. It is not sunburn. Although I live in South Florida, I am a homebody, mostly due to lack of energy, and I do not frequent the beach or stay in the sun any longer than it takes to go to my car to pick up my children, etc... About 5 years ago I began to suspect Lupus. Slight joint pain. Swellling of cranium down neck. Butterfly rash. Pain in right side. Repeated UTI's. Kidney stone problems. I had my first kidney stone that stayed in my body for 4 months. I went to the E.R. 6 times in a period of 6-7 weeks and on the last visit to this particular hospital, I was told by the E.R. doctor that it was back pain and I should see an orthopedist. I protested and he told me "if you don't like my opinion, you are more than welcome to go elsewhere". I did. I ended up in another E.R. outside of the county I live in and within 2 hours all the blood work that came back normal at the other hospital suddenly wasn't, the urine that was normal suddenly wasn't and very quickly they discovered I had a kidney stone that wasn't going to pass. I had to have it surgically removed. Ultimately, however, I continued having pain in my right side and it ended up to be AVN.I found out that my left side (although very little to no pain there) was just as affected. 80% of my hips have been affected and I will need total hip replacement surgery in both sides. I began having trouble at my job. I work with autistic children and on one particular day where we had to move our class from a portable to a classroom, I turned beet red in the face and found that I was not really sweating normally. I had never had that happen before and it definitely made me take notice. Ultimately the pain in my side became so bad and my skin reactions from any type of sweating or even the slightest sun exposure resulted in my having to leave a job I loved second only to my family. I was also in the process of obtaining my B.A. degree in ESE Elementary Education and the struggle to get through that took over and this too I had to give up. Through the course of the past 5 years or so I have been to a zillion doctors and in and out of the E.R. more times than I care to remember. At one point, with the onset of my skin problems, I had pus and oozing coming out from behind my left ear which would crust over into a yellow color surrounded by red, inflammed patches. The patches were also presenting on other areas of my skin as well (mostly my neck area). I was told by the Doctor I was seeing at that time that it was because I was "fat". He didn't use the word obese, he used the word fat. "It is because you are so fat" were his words exactly. I never returned to see him again. I started using painkillers for the pain in my side (mostly vicodin...AVN was just diagnosed 3 months ago) and xxanax to help me sleep. Although exhausted, I couldn't get comfortable and couldn't turn my mind off. Sleeping was a luxury for me at best and still is. I started to make the rounds of doctors. Because of the butterfly rash on my face I began to question my primary about Lupus. They ran bloodwork which came out negative. When I would ask what he thought was causing all my problems the answer was litterally "I don't know". About 6 months ago before being diagnosed with AVN I ended up being admitted to the hospital. They did a series of tests ranging from gyn related to g.i. related. They discovered I was post menopausal (something I had been telling drs. for 3 years to no avail as well), I went through menopause without any benefits of medications, etc...because nobody believed me. They also discovered that I had a hyrneia, inflammed bladder and inflammed intestines. They sent me on my way, giving no reason for the inflammation and suggesting prevacid or prilosec for the hyrneia (neither of which has ever worked). About 4 weeks ago I had another reaction (or flare?) that caused my cranium to swell, my fingers to "lock" in a claw like position, with much discomfort, swelling in my toes and the butterfly rash to act up so much so that my face had a waxy sheen, was hot to the touch, and completely inflammed and uncomfortable. I ended up in two different E.R.s, both of which thought I had Lupus but would not run tests as apparently Lupus is not an emergency. I was not admitted either. The first hospital prescribed an antibiotic. The second hospital gave me a bag of solymedrol. I was worried about taking the prednisone as they believe that might be what caused my AVN. I am asthmatic and have been treated with prednisone on and off for the past 15 years. When I was seeing a dermatolgist for my skin problems he also treated me with prednisone. After hearing what both E.R.s had to say in reference to Lupus I called my primary to broach the subject again only to be met with disgust that it was Emily calling again. His assistant called me back to tell me that Lupus is not an emergency. I have an open access health insurance plan and I took myself to a rheumatologist I had seen almost 3 years ago. He initially stated that he too thought it could be Lupus and that it is not always defined by bloodwork. Alot of times the bloodwork produces false negatives. As crazy as it sounds I was glad for the diagnosis. Relieved, ready to move on and do what needs to be done to get well. He ordered a battery of test, some of which I am scheduled to have done, some of which I have had done. I return to him on the 18th of this month for a follow up with the hopes that all tests ordered will be done by then. In the meantime the bloodwork revealed that my Eosinophilia levels were high and my Vitamin D levels were low. Nothing significant was revealed in the x-rays done on my hands, fingers, wrists, hips, or feet. Nothing significant revealed on my hips? I called to question this as I do not want to undertake surgery for nothing significant. (I had two MRI's done on my hips that revealed AVN, something significant). His "nurse" explained to me that he said sometimes X-rays aren't enough to show anything. Why didn't they just do an MRI? He knows what I have been through already. Then I questioned the blood work. Does the results of the blood work indicate Lupus to him? Do I have an answer? Does he still feel that this could be Lupus? His nurse asked him all of my questions and called me back to tell me that the bloodwork revealed I do not have Lupus and he would talk to me when he sees me on the 18th. In the meantime, I am flaring again, pain in my fingers, cranium swollen, face with butterfly rash warm, eyes sunken, joint pain in my shoulders, elbows, etc... How do we go from bloodwork doesn't always reveal to bloodwork revealing that I do not have Lupus? How do I get answers to what is wrong with me? How do I continue to care for my youngest son? How do I continue persuing the will to even live like this? I am so tired, drained, depressed and exhausted from the lack of knowledge and the treatment toward me as a human being. I am tired of being thought of as a hypochondriac. I am tired of these doctors. I am tired of our system and I am just tired of being tired. Do I have Lupus or not? I need answers. Is there anyone who can help me? Any advice that I haven't already heard or tried? I have a series of tests that I am about to embark on. I do not want to go through them if he no longer thinks its Lupus. They will reveal nothing and I will be right back where I started from many years ago. I burned bridges with my primary as I had enough of hearing the disgust in their voices when I called. After the rheumatologist told me he thought it was Lupus, I was hasty in passing that info onto the primary doctor's office and I was none too nice about how I did it. I cannot continue doing this and am ready to just have my surgery for the AVN and let nature take its course on whatever else is going on with me. Help, Please, Please Help Me.
Some of my other symptoms have been a feeling of numbness in my fingers, joints, etc... weakness where I feel I can't lift my arms or legs, pain down my legs, especially around my thighs(could be from the AVN), dizziness and times and I have noticed short term memory loss. I am sure there is more but I am so overwhelmed at this point my brain will explode if I have to think about this for another second.