My Story (Part II)

If you haven’t read My Story (Part I), check that out before continuing…

First thing the next morning I scheduled a follow-up appointment with my PCP. I don’t remember being too worried about it, mostly annoyed that I had to take time off of work to go see my doctor. In the meantime, I was still really struggling with the joint pain in my hands and was starting to notice more fatigue than I was used to, but I wrote that off as stress and taking on too much at one time. When I got in to see the doctor I explained everything to him and he was a bit skeptical about the idea of it being lupus simply based on the joint pain, but decided to run his own panel of bloodwork to see if he could figure out what was going on. In the time that I was waiting for the results of my latest round of blood work, I – very briefly – looked up ‘lupus’ on the internet because I had never heard of it before. I remember reading an article on WebMD that linked to a video of a woman describing how she was managing living with lupus. She discussed how she had once led a very active life, but since getting sick she could no longer be as active, she ended up having to leave her full-time job because she just couldn’t manage to work anymore. I remember thinking that that would never be me…even if it was lupus, I would NEVER let it change my life and my level of activity. When the second ANA came back positive too and the rheumatoid markers were negative, my PCP called and said, ‘I believe it could be lupus, let’s get you set up with a rheumatologist’. He recommended someone local to me and when I got in with that doctor he told me that in his opinion it actually wasn’t lupus, but something called undifferentiated connective tissue disease. The way this doctor explained it, undifferentiated connective tissue disease was in the same family of autoimmune/connective tissue diseases as lupus or RA, but had no risk of damaging the body and would likely never become anything serious. He told me that there was really nothing we could except monitor it and put me on a prescription of Plaquenil.

During the three or so years that I saw this doctor my symptoms drastically progressed and he completely ignored them. I ended up breaking out in painful rashes all over my face and body after a trip to the beach…he told me it had nothing to do with my connective tissue disease. I had multiple trips to the emergency room with horrible chest pain and trouble breathing (especially when lying flat on my back)…he couldn’t have cared less. Numerous prescriptions of prednisone for said chest pain, by my PCP…had nothing to do with my UCTD according to the rheumy. As a matter of fact, most of my visits I spent looking at his back as he stared down at a piece of paper. The joint pain worsened…but my labs looked great, he said! I started experiencing fatigue so bad that I could barely function…in his medical opinion, I just needed to sleep more or stop complaining. He was THE WORST! I have not one nice thing to say about him.

At this time in my life, I purchased my first home (on my own, I might add) – which was beyond exciting and I had taken a job with the MD State Police that I loved. Work and school were getting tougher and tougher to balance due to the constant pain and fatigue I was struggling with, but I continued to push myself. Eventually, I started having days or weeks – after pushing myself too hard – where I couldn’t get out of bed…I was so exhausted I could barely keep my eyes open, my body ached and I felt like my brain just wasn’t working. I ended up failing out of so many classes that I just quit school altogether (terrible, I know), but I was still pretty regularly working 10 hour days. In retrospect, I can see the cycle perfectly: push myself way too hard…have a flare up…doctor ignores my concerns…recover…repeat. All the while, I had no idea the damage I was doing to my body by ignoring the problems, not receiving the proper treatment, and refusing to change my lifestyle in any way. The final straw was the day that I burst into tears at work because I was so tired and in so much pain that when a coworker was asking me a question, all I could do was stare at him blankly because I could not come up with the words or form a single sentence to respond to him. I packed my things up, ran to my car and called my mom in tears as I drove home. I told her that I did not care what that doctor said, I knew something was seriously wrong with me and I needed a second opinion. After doing some research, (thank you, patient review websites!!!) I decided that I needed to go to John’s Hopkins and be seen by someone who had extensive experience with lupus. So I scheduled my appointment…

**(Stay tuned for part III…)