Some people have dramatic onset of symptoms seemingly overnight. Not me. As I started to tell in Fairy Tales, my disease came creeping slowly over a period of years. First came the fatigue, then a swollen neck/throat. One hand swelled to three times its normal size, turned bright red with matching heat production, and was incredibly painful. Then I got pneumonia. Headaches were next. My hips began to hurt. I started to understand what my dad meant when he would say, despite being only in his forties, “It’s hard getting old.”
More and more things began to go wrong.
My skin has never been dry. Oily, yes; dry, no. Nonetheless, the skin on my shins and arms developed scales. These scales did not hurt, nor did they itch. They just… sat there and looked flakey. Lotion had no impact, but I could remove the scales by scrubbing with salt & oil. Sandpaper would probably have worked, too.
I think it was around this time that my knees started to bother me. Mostly it was when I was going up and down stairs. I played a lot of soccer when I was younger, as well as a fair amount of gymnastics, so it’s not surprising that my knees would have twinges every now and then. Notice how I rationalized away another symptom? I chalked it up to just something I’d have to live with.
What surprised me, though, was my elbows. You never know how often you lean on your elbows until it’s not possible to do. Simply resting an arm on my desk would cause me to jerk back and start looking for the push-pin or glass that I’d stuck in my elbow. There was never anything there – which made no sense, given how I felt.
Can You Believe There’s More?
Around that time, I commented to my husband, “It’s the weirdest thing. When I get out of bed in the mornings, it feels like my feet are swollen. After I walk around for a while, it goes away. It sure is strange!”
“Strange” didn’t last long. My feet started to hurt when I got up in the mornings. I began to stay in bed until my husband was in the shower so that he wouldn’t know how bad it had gotten. Once the water was running in the bathroom, I’d gather my courage and roll out of bed. Then, as soon as my feet hit the floor, I’d yelp in pain as I rotated to fall face-first back onto the bed. With the weight off my feet, they didn’t hurt as much. I’d then gently lower my feet to the floor and ease my weight back onto them.
One morning hubby forgot something and came back into the room just in time to hear, “Aaaaaah!” and witness my collapse onto the bed. Truly shocked, he gasped, “What’s wrong?” Somehow my, “Nothing,” wasn’t convincing. “You don’t usually do this.” As I gingerly placed my feet back onto the floor, I retorted, “Yes, I do do this. Every day. I make a point of waiting until you’re out of the room. I told you that my feet hurt in the mornings. It’ll be better in a little while.”
I also started having horrible night sweats. I’d wake up with the sheets drenched. Eventually I started sleeping on a giant towel; it would absorb everything and I found it much easier to toss a towel into the laundry than to change all the bedding on a daily basis.
Next my shoulders started to hurt. I’d re-arranged landscaping bricks in the yard so thought that maybe I’d injured myself. Truth be told, though, mostly I’d pointed to where I wanted things and had my strapping teenage son do the heavy lifting. The kid had grown up hearing his father say, “Don’t hurt yourself,” to me so often that he didn’t think I should be moving heavy things and was happy to help. I know people can get hurt lifting things that are too heavy for them, but it didn’t make sense for my shoulders to hurt due to my son lifting things.
My wrists started giving me fits, too. I’d spent a fair amount of time on my computer and wondered if I was getting carpal tunnel syndrome on top of everything else.
I felt like I was falling apart. How could I keep hurting myself without remembering what I’d done? It never occurred to me, until after my diagnosis, that all those things were tied together in one tidy little problem.
Stay tuned for the conclusion…