Returning from our commercial break, we now continue the story of the girl with mysterious symptoms.
Again, I have a hard time recalling the exact sequence of events, but at some point I started having aches and pains that I never had before. (I’ll reiterate, sometimes your body is trying to tell you there is something wrong and you need to know when to listen to it.) I decided this must be it…I am now getting old and I was experiencing the aches and pains of aging. Over the course of a few of weeks, the aches came and went, but became more painful and more frequent as time went on. It felt like what I imagined arthritis feels like, except mine started in one joint and eventually EVERY joint! AND, I started to get muscle pains on top of that! I thought that something must be going on, but I hated to feel like I was overreacting or being a hypochondriac, so I keep pushing it off. I also started getting very itchy, mainly in my underarm area and the back of my knees. This progressed to my scalp, and I began to think that I was allergic to some soap or detergent or something new that I must be using. I do remember the itchy scalp being really bad when I went to the hairdresser to get a haircut and I thought it must be the shampoo or something…maybe I was becoming chemically sensitive. I had read about people that had bad allergies and would become so sensitive to chemicals that they would have asthma attacks everywhere and have skin reactions to everything! This was in October, I remember because I had gotten a haircut just before Halloween ( I was diagnosed in November). Again, I am lucky because I didn’t suffer through years of odd and painful symptoms before being diagnosed.
The next day after my haircut, I woke up in such pain that I could only lie in the fetal position to get any relief, and then I realized that I had red itchy hives all over! Panic set it, and I went to the walk in clinic. The nurse said that it sounded like lyme disease symptoms. Oh great, why would you say that! Now I am really starting to get worried. Little did I know that I would only wish that what I had was lyme disease. So, they decided to test me for a whole bunch of stuff, including lyme disease. Since the test results for lyme can take a long time, they said it was best to treat me for it with antibiotics just in case. While I was there, they also mentioned that my white blood cell count was extremely high. When I asked what that could mean, they listed off a number of possibilities from infection to autoimmune disease. But, she definitely said to not worry and that autoimmune disease is rare and that it was most likely not that. She said everything was probably fine. I left with prescription in hand, a slightly fearful mind, and thinking that I had lyme disease. I was feeling better after a couple of days on the antibiotic, so I thought it must be some kind of weird infection, or it was lyme disease. The test results came back negative for lyme, so the mystery was still unsolved, but I was feeling better…for now.
In addition to all my asthma, allergies, weird almost-passing-out-after-sneezing, joint and muscle pains, itchiness, and whatever else…I had also been experiencing a nagging on and off pain in my right side that was hard to explain and only slightly annoying. At first it felt like I had bruised something, but it was increasing and got to the point that it was too much to ignore, so I went to the ER. This was difficult for me because I had been to so many doctors that year that I really thought I might be becoming a hypochondriac. Delicious barium drink, CT scan, my first dose of morphine, and hours later, there was no explanation and I was sent home. I thought, what the hell is going on with me?! All of these unrelated health issues…was my body giving out on me already?! Oh, and in the ER, they mentioned my high white blood cell count, but no one seemed overly concerned. I’m still not sure why three different doctors seemed to think this was nothing to be concerned about or required further testing.
I think that pretty much covers everything up to the time of my diagnosis. When I write it all down, it doesn’t seem as dramatic as I remember it feeling. It’s different to read something and to experience it. It definitely felt like I was just having these scary and traumatic health experiences over and over again. When no doctor could explain it, and on top of it they were telling me I had unexplained high white blood cell counts, I just left every appointment with the feeling that maybe I was making it all up. On and off throughout all of these experiences, I had been on prednisone. I bring this up because I did forget to mention that I had started to experience anxiety and panic attacks on a fairly regular basis after the one that I had when I went in the ambulance. I still didn’t know that what I was experiencing were panic attacks though. So, it may have felt more traumatic and dramatic to me since my brain was thinking that I was dying!! Most of the time this would happen right after I would have one of my almost-passing-out-after-sneezing experiences. Since I would feel like I couldn’t breathe, and I knew I wasn’t having an asthma attack, I would immediately go into panic mode and then a panic attack would set in! I will discuss this more in depth another time, but I believe that this anxiety and panic was largely a result of side effects from the prednisone.
Coming up in our next story….the diagnosis! Stay tuned while we take a short commercial break.