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!!

Byron Brewer said...

Yikes! If only hair loss can be arrested at a moment's notice, but we can only deal with its consequences. Thankfully, we can work off of them, and have a better starting point each time. Thanks for sharing that! All the best to you!

Byron Brewer @ Knight and Sanders

Sara Gorman said...

A better mental starting point for sure! i know for sure that this will pass eventually. Patience is key. Challenging, but key! Thx for commenting!

Sara Gorman said...

What a great attitude! Thx for the uplifting take on your hair loss. Wigs ARE amazing...I remember when my sister offered to grow her hair so I'd have a wig ready for my next bout. So glad there are good options. Thx for commenting!

Sara Gorman said...

Another great option! Glad u found something that works. I'm sure your class thought you were so cool. Really! :)

Sara Gorman said...

This is long overdue, but i'm sure you were able to pull off whatever 'do you had to go with post partum! Always appreciate hearing from you!

Sara Gorman said...

Ah, the cockatoo stage. Finishing up that stage in 2015 right now! I do nothing to anger the hair follicles, as well. Respect is key! :) thx for commenting!