I would have symptoms that would come and go. I would always feel worse in the winter, but I would just think I was constantly having different viruses. I would get rashes on and off for years, but I ignored them and just thought they would go away, and luckily they would. I started to take over the counter anti-inflammatories daily, and that would help curb my pain. I always had something to blame my symptoms on, something other than a serious disease.
Six years ago (or so, brain fog) my internist at the time put together all of my symptoms and told me she thought I had lupus, and scheduled me for an appointment with a Rheumatologist. Due to the appointment being months away, by the time it came, I was no longer feeling bad. I stupidly canceled the appointment. I was not educated about lupus, and refused to learn anything about it due to fear. I did not realize that this doctor was unlike so many other doctors, in the fact that she was educated on lupus, while so many others are not. And that she was actually listening to me and really hearing me.
I tried to ignore my symptoms, but it all came to a head 6 years ago when I developed graves disease (autoimmune thyroid disease, overactive thyroid)I became extremely ill and dropped 30lbs. I was not overweight to begin with, and it was dramatic. I finally got diagnosed with graves, which is not hard to diagnose, but it seems that docs even have a problem doing proper blood tests for that disease. Then I started having trouble walking, then I could not walk. My doctors were not listening to me, so I switched doctors a couple of times, and finally went to a rheumy. This is where most people without lupus think our journey ends, and our diagnosis and treatment for lupus begins, but unfortunately it is just the beginning of not being listened to.
I found out the hard way that not all rheumies are created equally, meaning some should not be practicing medicine. This doctor, who shall remain nameless, due to me not wanting a defamation of character law suit on my hands, was so awful I do not think I could capture her cruelty in writing! Keep in mind that I could not walk and she would not do anymore blood testing on me or listen to me. She lied and said I had a negative ANA, when it was positive and she acted like I was wasting her time, like I was a hypochondriac (A person who is abnormally anxious about their health.)She actually ended up calling me due to some complaints and apologized for "being indifferent" which was an understatement. She went on to explain why she said my ANA was negative when it was positive, and that she thought I was so sick I needed to be hospitalized!! Yeah you read that correctly, she sent me away like I was just there because I was enjoying myself, but she actually thought I was extremely ill. My thought was, how does she treat people who do not look as sick as I do and can walk!! She proceeded to ask me if I was sure I wanted to continue to see another rheumy!! Of course there are many others with awful experiences with her and many other rheumies. Why are there so many "indifferent" rheumies? I wish I knew but many of us have the same story.
I decided to get a lupus diagnosis or be told it wasn't lupus from the University of Pittsburgh's Lupus Center. I saw a beautiful rheumy there! She listened to everything, she looked at all of my pictures of rashes, ulcers,inflammation, she gave me a proper exam and actually touched me! She watched me walk or lack of walking, she sent me for 12 vials of blood. I was so prepared for this visit, because with lupus you have to be. I kept a list of all of my symptoms, we were both thorough. She told me due to my other blood tests and my big folder of medical history, before I even left the examining room that I had lupus or undifferentiated connective tissue disease. Both are treated the same way. She gave me lupus meds and sent me for her blood tests. I had just gotten out of the hospital at that point and I begged the doctor to let me out due to that important appointment. I see another local rheumy now because Pittsburgh is 4 hours away from me, and I am too sick most of the time to travel so far. This was my journey to a lupus diagnosis.
You can find the amazing Mrs Lupus at her Blog, and her Facebook page.
This story is part of the Sometimes, it is Lupus events to mark World Lupus Day in May.