Wednesday, January 5, 2011

Old benchmarks revisited

I've recently seen the resurgence of two past benchmarks - one good and one not so good. Which would you like to hear first - good news or bad news? Before you answer, I should actually say that the bad news isn't really all that bad - and it does have a bit of a good news twist - so maybe I'll just start with that one, and save the best for last.
Bad news: I have another round of hair loss under my belt. My hair is thin enough now that I can twist it up and pin it back with a single, solitary that, pre-Bernadette delivery, wouldn't have been big enough to hold even half of the hair on my head. I've been here before - as hair loss is nothing foreign to me - but I was really hoping that it wouldn't be significant this time. Of course, it's not as bad as it could be - I've written before about being able to pin my terribly thinning hair back using little teeny baby clips - so while the clip in question is small, it's not that small. And I'm pretty sure it's just post-partum hair loss - not lupus-induced loss - which is a very good thing. It's not noticeable to anyone but me or Johnny, or maybe the kind cleaning people who scour my bathroom every few weeks...but it has made a bit of a dent in the old hairdo.
The good news twist: I'm pretty sure the loss is starting to subside. (At least the drain in my shower leads me to believe this is true.) Cross your fingers that I haven't just jinxed myself. I'll be sure to keep you posted!
And speaking of jinxing myself - onto my good news: I'm not due back to see my rheumatologist for three, count 'em, three months! That's never happened to me before - in the 10 years I've had lupus, I've never been able to go more than two months between appointments. Not because I was feeling bad...but just because my doctor wanted to keep tabs on me. But at my last appointment at the beginning of December - he said he wanted to see me back in 3 months. Woohoo!!! I waited to post about it for a good month, because if you recall, the only other time he's ever suggested we do three months between visits, here's what transpired the week of the appointment:
The day of the appointment - Dr. S declares a three month gap between that appointment and the next one.
The day after the appointment - I post a blog about said gap, gushing about how excited I am to have reached a new benchmark.
The day after I publish my gushing post - Dr. S calls to say that the test results of my urine sample came back - protein positive - and that I need to do a 24-hour urine test AND move my appointment up a month and a half. Ugh! Did I jinx myself or what?
The day after Dr. S calls - I write a follow-up blog, taking back my gush.
So this time - I vowed not to breathe a word, or get myself too excited over the prospect of the 3-month gap. In fact, Dr. S gave me a 24-hour jug and a prescription at my December appointment, just in case the test results came back protein-positive. But a month later - I'm happy to say that I'm still on the 3-month trajectory and protein-free. Yippee!!
Of course - in an upcoming post, I'll tell you about the little 12-hour arthritis flare I had - something I'm calling the lupus flare fire drill - which almost had me thinking that 3 months wouldn't happen. But so far so good. Stay tuned for details!


Gale in Alaska said...

Good luck on hair regrowth. I am fighting the hair lose battle and have 40% regrowth at 2 1/2 to 3 inches so I look like a cockatoo with my thin blond hair standing straight out. A friend asked if it makes me mad and said thank God it is coming back - Don't say anything to make my hair mad or it might all fall out. Good luck on a clean shower drain.

Sadaf Shaikh said...

Uggh, I hate the hair loss too! For me, the loss itself is not so bad (although it can look a bit scary when clumps start to fall - eep) but I HATE the regrowth phase. In the past, I've just chopped it all off (a la Demi Moore from Ghost) but this last time I resisted. A year later, I'm still waiting for all of it to be one length. I'm 13 weeks away from my due date and I'm hoping against hope that I don't lose all my hair postpartum. Really, really hoping...

Anonymous said...

I have lupus hair loss. As a teacher ( of oh so kind middle schoolers), it was becoming increasingly difficult to stand before my class without being overly self-conscious. My hairdresser told me about a new type of extensions that are attached by removable beads...NO damage. They look 100% natural and have been a lifesaver. I highly recommend!

Glynis said...

Wow, I have only come across this blog today. I am not one to spend too much time on the computer ( a tad old fashioned I'm afraid).
I wish this kind of book existed when I was diagnosed with Lupus at the age of eleven (in 1991).
I was told I had a life expectancy of ten years. What a ways we have come.
I lost 100% of my hair (alopecia totalis). With no definate answer, I suspect it is lupus related.
I love wearing my wigs. I can change my style, getting ready is fast and easy!!