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Little known facts are meant to be shared

Posted Feb 01 2010 5:00am

While I was very lucky to have been diagnosed with lupus within a few weeks of the initial onset of symptoms (swollen glands, fever, chest pain, achy joints), I know the odds are not in favor of a quick and early detection of a disease like lupus. It often takes people months, if not years, to finally reach a diagnosis, and that's not because they haven't tried. For various reasons, lupus is a tricky one to diagnose. The more common lupus symptoms, when considered individually, can indicate a range of illnesses, many of which are of little consequence, and, thus, are often dismissed by patients and/or doctors alike. It takes a concerted effort by both parties to connect the dots and determine if lupus is, in fact, the culprit. Lists, background information, and other little known facts about a patient's medical history are paramount to helping doctors piece together the puzzle of a chronic illness.
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Because my symptoms came on so strong and fierce 9 years ago, my doctors had very little difficulty figuring out what I had. I had a very proactive pulmonologist and a spot-on rheumatologist, both of whom were determined not to let me leave their offices until I had a reason for my pain and suffering. It was a patient's dream to have such attentive doctors...but in thinking back, I realize that I did my part to contribute to the discovery of my disease, primarily because I was able to offer the following information from my past that, up until that point, I thought was irrelevant:

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1) I had experienced an episode of gout about two years before. It was very random (and very painful), and I was treated by a podiatrist because it my foot that had swollen up to three times its size. By no means is gout an indicator of lupus, but it was valuable information for my doctors to consider when exploring past instances with pain, swelling, and other arthritic like symptoms.

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2) I had been complaining about joint pain in my knuckles during a recent hobby I'd taken up - pottery. Don't get me wrong, I wasn't going anywhere fast throwing pots on the wheel...but I did enjoy it. Johnny and my sister (and my grandmother, up until her death) still display my works of, ahem, art, and I'm proud of my little creations. But, by the end of my second 6-week session, I was experiencing a throbbing pain in my middle finger when I pulled up on the clay to form a pot. It really hurt, but because the pain would go away immediately when I stopped doing the motion described above, I didn't give much thought to it. I joking told Johnny that maybe I had some form of arthritis, but we both laughed that notion right out the door. We assumed my fingers were just unaccustomed to the repetitive-type motion I'd introduced.

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3) If you remember, I was diagnosed just 6 weeks after my wedding. And for about 6 weeks BEFORE my wedding, I experienced an annoying ache in my knees and hips. Being a victim of fashion, I had taken to wearing tight, high-heeled boots during that time, and had attributed the pain to the contortions my feet and legs had to make to wear those knee high monsters. Looking back, I'm sure that pain was a precursor to lupus, but when I wore those boots into a doctor's appointment one day, my rheumatologist took one look at my outfit and declared, "That pain in your knees? It's from the boots." Hmmm. I think he was just jealous of my fashion statement.

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4) During that 6 week period before my wedding, I could not, for the life of me, get out of bed before about 9am. I was never an early riser, but I was just dog tired every morning, and didn't know why. Again, I mistakenly attributed it to my wedding planning, the stress and late nights tying up loose ends. Although my work day officially started at 9am, my supervisor was extremely accommodating, allowing me flexibility to come in an hour later when needed. I told him I was sure once the wedding mayhem was over, I'd be more rested.

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All of these little tidbits, when taken individually, had pretty logical explanations. But when brought to my doctor's attention, and thought to be indicators of one primary issue, the picture started to become very clear. My doctors knew what I had...but the info I provided made them sure they were on the right track, and made diagnosis, and more importantly, treatment come that much faster.

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So get out those lists, take in those binders, and print out those chronic control spreadsheets. If you have a couple of little known facts to share - share them. Your doctor can't guess what's been going since he saw you last, so be sure to fill him in!

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