One other thing I lost most of was my hair. At first it only got thin, and since I have always had very thick hair, it wasn't so bad. Finally, though, it reached a point where it was pretty much coming out in clumps--brushing my hair was a nightmare for me, because I usually wound up with as much in the brush as there was remaining on my head. It never took all the hair, though--I could still wear a hat and look fairly normal with the hair on the sides and back of my head. I had some pretty hats, too. One night at a party an older guy wearing a ballcap wanted to trade me for my pretty purple chapeau--it had a flipped-up brim adorned with multi-colored gemstones, and was quite pretty when combined with my purple pants suit. Well, I had called myself comfortable with my hair loss, so I hadn't worn the wig under the hat--it got so unbelievably hot under the wig that I simply couldn't stand it and avoided wearing it whenever possible. When this inebriated fellow wanted me to flash my bald head to the entire room, though, I found myself embarassed. I wasn't about to admit that I was pretty much bald under there (perhaps I wasn't as comfortable with my cueball head as I had thought) but the only other option I could see was outright refusal with no explanation. Well, that was the path I took, though it made him mad at me at the time, eventually a friend took him aside and explained my reason. Haha, you couldn't imagine a more apologetic fellow!!!
The chemo worked wonders for my lupus, so I stayed on it for nearly a year--giving my body a much needed break from the steroids. The summer months were the worst, though. I kind of freaked my mom out when she caught me one day at the vanity with a pair of scissors hacking off the remaining wisps of hair. As I said, it got hot as Hades under that wig--imagine wearing a fur coat atop your head in 100 degree humid heat--a NIGHTMARE!!! It was better after I removed those last few hairs, but my hat days were over.
I had a nice wig that I wore after that, though I had to scrimp and save to afford it--even the cheap ones back then were over $100. I was involved in a church singles group at the time, and we attended a lot of outtings as a group. For Halloween, we went to a party at a church in a neighboring town. Well, I have a...shall we call it twisted..sense of humor, so the costume I picked for a church social was of course a devil woman. I had a red dress and a pair of horns I'd made out of floral wire and pasteboard triangles coated with red glitter--it was cute! Well, to get the horns to stay put, I had to stick the wire through the wig. But it worked, and we all had a fine time.
Driving back in my friend April's van, though, that warped sense of humor took over again. Most everybody in the group knew about the chemo and the wig--but not our group cut-up, Doug. You know the type--the smarty-pants of the group that lived for teasing us all. Well, my evil little self envisioned a way to finally strike back! During the ride home I made sure that the wire was firmly tangled in the wig, so that the two became inseparable. When we pulled back into town and were dropping folks off, I asked Doug to help me get the horns off, explaining that they seemed to be tangled in my curls. Well, with a little yelp and an artful twist of my head, off came the horns (and the wig) in my unsuspecting victim's hands. I think the poor guy nearly wet himself as we roared in laughter--the look on his face was priceless!!!! I consider it one of my finer pranks!!
Shortly after that, I began dating a construction worker. I wasn't comfortable dating a new guy and walking around bald in front of him, even though he of course knew I was bald, so while preparing dinner for us one evening, I leaned over the stove to remove some french bread from under the broiler, and--you guessed it--burnt my wig! Well, it was expensive, so I just had to live with it--though I did try to trim it up as well as possible, the front bang area was hoplessly frizzled.
Shortly after that, he went on the road working. While a friend and I visited him in Hilton Head, SC one weekend, I called around to some beauty shops to see if anyone could do something to help without costing an arm and a leg, since money was tight. Imagine my surprise when one of the trendier high-end salons told me to bring it by, that they participated in a cancer/chemo/charity-type program and would restyle my wig for free!
When I got there, the stylist told me what I already knew--that the wig was hoplessly fried--but he valiantly tried to fix it up for me when I told him that I just couldn't afford to replace it. He did as well as could be expected, though I did buy a new one as soon as possible.
I spent close to a full year on the drug before my body began to need a break from THAT treatment, so it was discontinued and I went full-time back to the prednisone. The lupus is way too active right now, though, so I have been considering giving the Cytoxan another shot---after all, I still have my wigs--yes, even the fried one--and the hats, so I am prepared! I am not all that worried about the hair loss thing--with a sense of humor one can get through most anything. And who knows when an opportunity for another wonderful prank might arise?? Hehehehehe!! *evil laugh*