“Here an ache, there an ache everywhere an….aw, screw it. I’m going to bed.”
My first Facebook post about what I am recovering from would be the first sarcastic omen to one doozy of an illness.
I wrote this post, not so you could feel sorry for me. Things could have been much worse. But I have never heard of this disorder before and, chances are, you haven’t either.
A Real Woman Can Take the Pain
I really thought it was just that time of the month. I was going through the waning moments of my visit with Aunt Suzie Q, as I used to call it when I was a teenager. Yes, I get the aches, the fatigue. Nothing I couldn’t handle.
Then by the next day, my ankles, particularly my Achilles, were in a lot of pain. A few Advil and a soak would take care of it, right? Maybe it was the walk I had taken in the wrong shoes…maybe I slept weird.
Heck, I’m a klutz. I have strange bruises and scratches from mystery injuries on the regular. Then the next morning, I told my hubby I felt hot (also not odd) and he told me I felt like I was literally on fire.
The thermometer proved it. I had a 99-degree fever, and when it climbed to 101, we both got scared. Hubby insisted on a cold shower, which I dreaded. Not just because of the cold, but because I was starting to lose my ability to walk without severe pain, as though I had fractured both my ankles.
Realities of Needing Help & Not Knowing Why
The shower was probably one of the worst moments. I was shivering and hurting. My husband stood right with me. Another frightening moment was when my husband noticed I had red, rash-like spots all over my shins and they were extremely painful to the touch.
We ended up at the doctor (admittedly, a doc-in-a-box), and the dermatologist told me matter-of-factly those bumps are usually a sign of an infection of an unknown origin. She drew blood and saw my white blood cell count was a little low, indicative of an infection.
The best thing to do was keep the fever down and my feet elevated until it passes. Sadly, that was it.
The next 24 hours was excruciating – my feet and ankles were painfully swollen, and I could not walk without help and without experiencing horrible pain. I started to develop the rash on my upper legs and arms. I tried to make light of it: I rode the scooter around the grocery store and made it an adventure.
But when the fever began to creep back up, we returned to the doctor and was seen by a doctor I had worked with before.
The One Who Shall Be Named
Almost as soon as he walked in, he quickly said, “Oh, you have erythema nodosum.” He was in and out to get some work up done on me.
Say, what? My husband and I looked at each other, because clearly he had spoken medical gibberish. When he returned, he had to write it down for us. My husband joked it sounded like a magical spell, so of course when I had to say it, I put on my best Harry Potter Patronas prep voice.
This of course reminded me of a funny episode of “American Dad” where the son, Steve, is deluded into thinking a drug den is actually Hogwarts. He walks into a kitchen where there’s a meth lab, and the Hispanic cooker asks Steve to “Lavate los manos.” (Wash your hands) Thinking it’s some sort of spell, Steve constantly repeats the phrase to the angry drug dealer. (“Dope and Faith” episode – sadly, video clip is gone.)
Three hours and more tests (and hobbling) later, they couldn’t determine why I had a fever, which had climbed to 103 at the doc.
Same prognosis. Nothing could be done, because they weren’t sure what caused it. I couldn’t take an antibiotic, because it would be of no use to a viral infection. I couldn’t take steroids for my ankles, because it could make me sicker if I had a bacterial infection.
Back home we went, with little answers, but a dose of Tylenol which kept my fever at bay for good. I Googled this mystery spell and realized this may actually be a side effect to birth control. I had just started taking a new one. And the red patches weren’t the only symptoms. It could cause joint inflammation, malaise (ickiness) and fever.
My Secret Weapon
Over that weekend, I accepted my fate and tried to overcome this spell with the few tools I had. I stayed off my feet, and my dear husband was a lifesaver – helping me get in and out of bed, comforting me, making dinner, constantly checking my temperature. He was my tireless hero.
He was the magical antidote to my spell.
I returned to the doc for a third (and hopefully final) blood draw to send off for further testing. We had the dermatologist again, who now thinks it may be an autoimmune disorder. I’m seeing my OB/GYN as a follow-up to a previous visit and discuss my birth control alternatives.
Thankfully now, as I write this, I’m on steroids for my ankles, the inflammation on my body has lessened and am starting to walk and feel less like a zombie and more like a human again.
It was a joy to get myself out of bed early this morning and get some breakfast. And I hate mornings.
For more on this rare inflammatory disorder, go to: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001884/