I am not a writer and really have no idea what I am doing here, lol I just want to tell my story and hope it helps someone.
It all started with a little joint pain, mainly in my wrist and hands, of course I thought it was because of my job which consisted of a lot of typing, it wasn't until years later that it all started to make sense. After getting over strep throat I began experiencing fatigue that was so debilitating it scared me. I didn't know what was wrong with me, I just knew it wasn't normal. I went to my doctor in tears, explaining to him that someone in their early 30's should not feel this way. Thankfully he took me serious and drew blood, after my ANA came back positive he referred me to a rheumatolgist.
My first rheumy was very sweet and began treating some of my symptoms right away. She didn't diagnose me with lupus but with UCTD because at the time I did not have health insurance and she wanted to be 100% certain before giving me that dx. I had a lot of GI problems despite being on a gluten free diet for years, she kept putting it off on my GI doctor and he wanted to put it off on the rheumy. I was stuck in the middle still with no answers. It wasn't long when I had health insurance again and had to change doctor's because she didn't accept my new health insurance.
My second rheumy was a total idiot! All he cared about what the fact I didn't look sick. He seemed more interested in the type of job I had at the time which was in collections, he went on and on about some story that I cared nothing about. I wasn't there to chit chat with him, I was sick and wanted answers!!!! He did run some blood test and then wanted to argue the results because some of them were positive and the others were negative, he was convinced the lab made a mistake. After I asked him about my symptoms and the way I was feeling he said "maybe by the time I was 90 my blood work would catch up to my symptoms". ?!?!?!?!?!? I was shocked and left his office in tears. By this time I was determined to find a doctor that would listen to me and take me seriously! That's when I found my current rheumy.
The very first visit she spent over and hour answering all the questions my husband and I had, explaining to us what lupus was and how it affects the body. She looked at all my labs from the past year and ran ONE blood test. That's all she needed to point her in the right direction. It wasn't long and I had a diagnosis and on a new treatment plan. She was determined to help me feel better and give me some of my life back. I was so thankful for her and the time she spent with us on the first visit and each time I see her I sent her a thank you card which she appreciated and mentioned the next time I was in her office. I always try to take her and her nurse some kind of gift, like chocolate, candy, etc. I want them to know how much I appreciate the time she spends with me and not rushing me in and out like cattle.
Unfortunately over the years this disease has progressed and I have more problems and take more meds than I did in the beginning. I take life a day at a time and thank God for all of my blessings. I believe everything happens for a reason and I can only hope that through my own experiences I can help others living with this disease.
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