Tag Archives: Imuran

Saying buh-bye to my hair

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I mentioned noticing hair loss a few posts ago.  At this point I have to face the reality that my hair is seriously falling out.  Today I can see my scalp.  The texture has changed and it is noticeably thinner, especially around the front of my face.  There was a time when I’d be taking 60 mg prednisone a day and my hair would become brittle and break easily.  My present dose of prednisone is 5 mg, so I don’t think that’s the problem.  My thyroid levels are normal.  Is it the Imuran I’m taking?  Is it the infusions?  I started noticing some moderate hair loss after starting Imuran, but only when I was drying my hair.  A few weeks ago my dose was increased by 50 mg.  During this period, I also started immunoglobulin infusions.

So here’s the rub.  There’s nothing I can do about this.  I could stop taking Imuran, but I’m not 100% sure that’s the problem.  I don’t think the IVIG is the culprit.  Not knowing what the hell’s going on here really pisses me off!  What’s next?  Who knows?  Should I buy a wig? I’m sick of having to stop and adjust to yet another lupus-related problem in my life.

Yes, I know there are people out there with bigger problems than mine.  Yes, I’m grateful for all the good things in my life.  But today, I’m ranting. Today lupus has the upper hand … again.  Today I feel helpless.

Not too long ago I read a blog where the author posed the question: ” What do you do to relieve stress?”  I know what helps and what doesn’t.  But I’m not interested in constructive ideas at the moment.  I want to crawl into bed, pull the covers over my head and cry.  I want someone to put their arms around me and tell me they love me no matter what I look like.  I want to take a shower and not have a handful of hair circle the drain.  I want to pull myself together, feel brave and keep moving forward but today I just can’t.

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Crunch Time

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Over the weekend I spent a ridiculous amount of energy fumbling around in blog-limbo. I was trying to download/upload/import/export some photos and tag it to a sidebar widget. When you upload photos, the software “crunches” the images to fit on a page or post. Eventually, it gets crunched to the correct location. In theory. If you know what you’re doing, which I don’t. At the moment, I can talk the talk about blogging but can’t execute many of the features. So, I posted stuff and deleted stuff and now there’s a giant image in my sidebar that apparently did not get “crunched” correctly. I can’t seem to delete the thing and now it may be stuck there forever. Great.

Reminds me of the wacky immune system I got going on at the moment. I’ve maxed out the dosage on the medication I’ve been taking. Last month I started on yet another immune suppressing drug, Imuran. It’s done a swell job of lowering my hemoglobin and hematocrit. It’s not “time for a transfusion” low, just low enough to feel like I’m on the verge of being sick, but less pale and pasty. My white count is down and my liver enzymes are elevated. Thank God I’m not jaundiced.

I must admit that having lupus is like trying to delete that pesky sidebar image. Despite my best efforts, I can’t seem to string together a week’s work of “feel just great” days. Instead, I take all sorts of medication, work hard, try to spend quality time with family and friends, clean, cook, shop, take more medication, rest, get 8 hours of sleep at night and still fall short of feeling normal inside or outside.

This weekend turned out to be a fine example of my personal crunch time.

This weekend I had friends over for dinner on Friday night and watched the Olympics. We drank wine and ate Chinese food, salad and chocolate ice cream. I stayed up past my bedtime. This weekend I decided to drive 200 miles round trip to be with my sister on Saturday. We went to a movie. We went out for lunch AND dinner. I stayed up late watching the Olympics and after that, stayed up really late messing with side-bars and widgets and photos. I got up early on Sunday and drove back home to attend a bridal shower luncheon for the daughter of a good friend of mine. Wonderful lunch, champagne, laughter and good time spent connecting with friends. I came home and vegged out, watched a movie and hung out with the cats.

It was crunch time this weekend. And I’m not talking about cereal, here. When it’s crunch time, I hold my head up and move forward. When it’s crunch time, I embrace the good stuff in life and turn the volume up. When it’s crunch time, there’s no room for lupus. Just like there’s no crying in baseball.

Will I feel the crunch tomorrow? Will my immune system misfire? Will I drag my sorry self throughout the week, trying to get through it? You bet I will. I’ll still be anemic and photosensitive.

Someday, I’ll figure out how to put photos in the sidebar on this blog. And maybe I’ll leave it the way it is now because I can. Someday, I’ll experience crunch time and a lupus remission. Put that in a sidebar and smoke it!