Friday, October 31, 2014

Darwin wishes you a Happy Halloween!

The First Hair Cut after Hair Loss: The AFTER

When I was eight years old, my older sister took me up the street to our “hair dresser” (the older lady who cut hair out of her house), to get my bangs trimmed, at the request of our mother. I don’t remember much about my hair cut, but after the lady showed me the cut in the mirror, I remember smiling excitedly, and saying, “Oh, I love it!” My sister then paid for the trim, and we proceeded to the door. As I was leaving, I turned back and said appreciatively, “Thank you so much, Mrs. E!”, and then the moment she closed the front door, I burst into tears. I cried all the way home, my sister doing everything she could to make me feel better.  But it was the worst cut I’d ever had, and I was inconsolable. 

We’ve all been there – a bad haircut can feel like the end of the world.  Bangs that are too short, sides left too long – cuts that you immediately know aren’t good. There are also those “sleeper” haircuts – cuts that seem fine when you’re at the salon, and your hair stylist has worked her magic. But then you get home, and play with your hair for a few days, and realize not only can’t you recreate the style, your version of styling makes it looks like the worst bed head ever. 

I recall one of these haircuts taking place after I first moved to the D.C. area. My then-hair dresser thought I looked like Pat Benatar, and felt that I should have a haircut to go along with the face. Sure, it looked great after her primping. But once I got home and started playing with it in the days to follow, it looked like a bad mullet with spikes. Yikes! (BTW, I consider the Pat Benatar comparison a compliment. She still looks lovely today!)

So for those of you who’ve just had or are still recovering from a bad haircut, I feel for you. I’ve included a couple of articles here and here to help you through it.

Thankfully, my most recent haircut was nothing like any of the above. My new ‘do continues to work well for me. Washed and styled, towel dried and tousled, or even the day after washing – my hair cut is going to be just fine.

While I’m still enjoying the newness of it all, I plan to keep the following things in mind for AFTER this first hair cut:

One – I need to enjoy my new ‘do! 

Because this cut was emotionally transformative for me (bonus is that I think it brightens my face, too!), I plan to embrace my new cut, and readily accept the compliments. While my close friends (blog readers included in that group!) know that I’ve had hair fallout, a lot of people wouldn’t notice with my new cut. So instead of being quick to offer up disclaimers about how much hair loss I’ve had, now I’m just going enjoy the nice comments. I’ve started saying, “Thanks so much. I had a tough go of it over the past few months, but my hair dresser worked wonders”, and that seems to be working well. I even picked up a few new frocks to celebrate my new ‘do. With a good hair cut (and a new outlook on life), everything seems to fit better!

Two –I need to celebrate the positives of thin hair.

Okay. So while I may have a decent cut for the time being, my hair is still very thin, and it doesn’t take much of a breeze to blow the wispy sides up to reveal the short spikiness underneath. Nor do those short spiky strands have any interest in laying flat. So as happy as I am with my new ‘do, I want to focus on the good points of my current head of hair, rather than dwelling on the not-so-fun parts of growing out my hair. 

So what are the good points? 

Thin hair takes less time to dry. Like, a lot less. 
It looks much better in a hat, because the back and sides aren’t puffy. 
It lays flatter so that the angles of the cut fall the right way. 
I can use any size hair band to put it back because there’s not much there. 
And finally, it’s not as frizzy/unmanageable/untamed/bothersome as thick hair. 

Here’s an amusing list of top ten things people with thick hair have to deal with. See? It’s not always greener on the other side!

Three – I need to manage my expectations.

As mentioned. I love my cut. I wish it would stay this good forever. But I have to be honest with myself. The fallout may not be over, or it could always start up again. The spiky new hair sprouts may not grow in well, and I may be staring a serious case of helmet in the face this winter. Or the cut simply may not grow out well. But all of that is okay, as long as I remember that whatever happens, hair grows. There may be some transitional cuts in my future. In fact, I may need to go shorter as the spikes grow longer. Or I may not. Either way, I’m not throwing out those short hair magazines just yet. I’m going to take it one week at a time, and remember to be open to an ever-evolving head of hair.

No matter what happens from here, I can definitely say that I successfully made it through my First Hair Cut after Hair Loss. Now let me just find my Pat Benatar wig and microphone, and I’ll be all set for tonight!

Happy Halloween!

Wednesday, October 29, 2014

The First Hair Cut after Hair Loss: the DURING

For as long as I can remember, I’ve had a thick head of dark hair. I’ve always appreciated having a lot of hair to work with, but I’m not very good at recognizing which haircuts are designed for thick hair. In fact, every time I’ve taken in a photo to my stylist of a hairstyle I’d like to try, she always says, “That’s nice, but your hair is so thick, it won’t look like that or lay that way.” And then she comes up with an alternative that DOES work for thick hair. 

But not this time. This hair appointment was going to be different.

With my thinning locks, it turns out that I could actually pick a ‘do that would turn out just like the picture. My ends would lay flat, my texture would be right, and my hair would be manageable. (Talk about finding the silver lining!)

So when I went in for this cut, my First Hair Cut after Hair Loss, I was excited. I was ready for a change. I was ready to put this bout of hair loss behind me. And I was ready to have a picture-perfect ‘do. But I still needed to be aware of a couple of things when I went in:

One: I needed to be honest about how or if I was going to style my hair.

As my stylist was determining exactly what kind of cut to do, she asked if or how often I was going to style it, And I had to think long and hard about my answer. For the last 3-5 months, I've done nothing but pull it up into a clip, or pin it up on the sides. It took no time at all, and I actually started to like the swiftness of it all. But then I thought back to before the loss, when I actually could blow dry it, straighten it, tug it here, and flip it there. Remembering how fun, sophisticated, and feminine I felt doing my hair, I realized I was ready for the chance to do that again. In fact, touching my hair had been off limits for so long, taking an extra ten minutes to style it was going to be a welcomed change. 

So when she asked, I told her that I would definitely blow dry it most days (and enjoy every minute of it!). But I added that once in awhile, I’d like to be able to just push it behind my ears and go, or put it up in a pony tail. So she cut accordingly, and I'm happy to say that it truly works all ways. 

I mention this because I had a friend who made this mistake years ago. She went to her stylist, wanting a new ‘do. When asked how she styled her hair, she said she blow dried and styled her hair most days. Well, the term “most days” was a bit misleading, because she told me she never blow dries, and “styling” to her involves finger combing. (Good thing she has good hair to begin with!) But the fallout of her fib was that the stylist gave her a cut with layers and tapering, which really needs a little TLC. So she ended up with layers that weren’t cooperating, and a "finger comb" that wasn’t doing the trick.  

So if you ARE getting a new ‘do, be honest about what you’ll do with it. I promise – a good stylist will be able to work with whatever you give them!

Two: I needed to let the tears come if necessary.

When I experience hair loss, it’s upsetting. Seeing clumps of your hair everywhere is unsettling. Spying bald spots all over your head is distressing. And actually feeling the thin wisps of hair that are left on your head can be depressing. And when my thinning hair is wet, it looks even more appalling! I can see balding where I didn’t even know it existed, and the scraggly leftovers from my hair loss make me look like a haggard old witch. Yuck!

Knowing that my hair would be shampooed (“Gently, please…there’s not much up there”, I told the shampoo girl), and left damp during the cut, I tried to prepare myself. But those mirrors are just so big, it was hard to find a safe spot to look. The beginning wasn’t too traumatic, because we were busy strategizing about which way to part my hair, which side was thicker, etc. And of course, my stylist kept me busy talking about other things as she cut. And she took so much time on the cut, even in the sections that were quite lean, that it made me feel as though I had all the hair in the world. She was so conscientious, and I appreciated her making me feel as though my hair needed all of that attention.

At one point, however, the thinness got to be too much. There were so few strands in one or two sections, that as she was blowing it out, they just flailed in the hot breeze.  She was unfazed, but it was too much for me to handle. I started to tear up, she reassured me, and we began again. But then it kept happening, so I asked her to turn me away from the mirror so I couldn’t see the wisps. I pulled myself together, she told a few empathetic, amusing stories to make me feel better, and we went on.

And when I saw my dried and partially styled hair a few minutes later, it looked like an entirely new head of hair! The thinning sections were imperceptible – and my picture perfect look was starting to come together. I’m glad my emotions were running high, though. I needed to get out a few tears before being able to decisively move forward with my new ‘do.

And the 'do? It's a slightly angled bob, just above the shoulders. A little longer in front so that I can pull it back if necessary. It's off my shoulders, so it doesn't drag, and I get as much bounce as possible. (Her words, not mine!) And with the shorter length, the hair isn't laying against my shoulders or back. It's just hanging in mid air, to mask the thinness. She also layered/stacked the hair in back, so that it pushes the sides forward, giving me maximum fullness. She side swiped the bangs (like I've always done), but we swapped the part to capitalize on the lesser of the two thinning sides. And we joked that this time, she wouldn't need the thinning shears. The texture was just fine!

Three: I needed to trust my hair dresser.

I’ve been going to my stylist a long time. And I trust her. Completely. So when she said my short spiky hair growth wasn't enough for an all-over short ‘do, I believed her. When she recommended we go with this certain cut, I went along with it. When she suggested we do a little comb-over here, and borrow a little hair from there, I thought it was brilliant. She showed me how to creatively style it, and how to disguise the thinning parts. She showed me where the "part that's not a part” should be, and how to hide the sprigs of new growth. I listened to her advice, and followed it exactly. It was reassuring to put my trust in someone who understands how hair can be managed, tamed, and tricked. 

As she spun me around to see the new 'do, fully styled, I was moved to tears. She had done a great job on this First Hair Cut after Hair Loss. I emerged from her chair a new woman, with a rekindled confidence I haven't felt in months. As I thanked her for everything she’d done for me, she said, “Oh, Sara, this is my job. This is what I do.”

Her straight-forward response almost brought me to tears again - realizing that in "just doing her job", she'd given me the gift of a brand new start, with a renewed sense of self I was aching for. Without a doubt, she definitely got the job done that day! 

Monday, October 27, 2014

The First Hair Cut after Hair Loss: The BEFORE

“How do you handle hair loss?” It’s a question I’ve been asked a hundred times by readers, customers, and fellow lupus patients over the years. I find that while I always have an answer (because if you’ve ever experienced hair loss, you always have something to share), my response continues to evolve, primarily because I continue to evolve in the way I deal with it. There’s no right way to do it. We all lose different amounts at different times for different reasons. But what I find doesn’t differ, is the way that hair loss can make us feel. Sad. Dejected. Fragile. Vulnerable. It can be a very unsettling feeling that lasts as long as the hair loss lasts. And beyond.
But I’ve found that once you get the first hair cut after experiencing a bout of hair loss, the anxiety and distress over your loss begins to subside. Sometimes it’s gradual, but most often, once I spin around in the salon chair and see my new ‘do for the first time, I experience an immediate renewal.  I feel so much better…about myself, about the loss, and about the future. I feel empowered, and all at once, I feel lovely, inside and out. Anything over about 6 months of loss can leave you feeling pretty crummy about your appearance. But with a new ‘do, you just feel like you can begin again. The slate is clean…let the hair growth begin.
As I mentioned on Friday, I’ve just turned a corner, having just had my first hair cut after this bout of hair loss. Today, I’ll tell you about the “Before” – the preparation and anticipation of that anxiety ridden, yet cathartic trip to the salon.
Before I made the hair appointment, I was waiting for a few things to happen:  
One: I wanted my hair fallout to stop.  
Sometimes, I don’t wait. In fact, over the summer, I considered making an appointment several times, even when strands of hair were still falling from my head en masse. I was just so anxious to get a fresh start, and thought that getting a transitional cut might just hold me over until the loss subsided. But every time I pictured myself going into the salon, all I could think about was how much hair would be in the sink after my shampoo/condition. I also imagined my stylist being stymied by the enormous amount of hair that would undoubtedly fall out as she tried to cut. So the fact that I was so self-conscious about going in made me realize I wasn’t ready. And so I waited. And waited some more. And once the loss DID stop, I had very little apprehension about making an appointment. I knew the stylists would still need to handle my hair gingerly, but I wasn’t so preoccupied about the fallout that I wouldn’t be able to enjoy the transformation that would undoubtedly occur!
Two: I wanted to accumulate some new hair growth.

I was very lucky in this round of loss, because my hair started to grow back months before the loss ended. So while there were about six weeks where I definitely had bald spots to cover up, when the hair loss got really significant, I had accumulated a nice layer of what I call ground coverage all over my head. It appeared that I still had a full head of dark hair, even though I’d lost probably 20% of my hair. Of course, looking closely, it was obvious that something was amiss. And when I let my hair down, or when it was wet, forget about it! If you lifted a few strands off the top, you were in for a big surprise. But I’m very thankful for that ground coverage, and I knew I wanted it to be slightly longer than my previous moss stage, so that my hair dresser had something to work with. From hair loss bouts past, I knew there was always a possibility that I would need to go super short, just to make a clean break of it. And I would need some length. So I watched. And waited.

Three: I wanted to find options for a new 'do on Pinterest or in a short hair magazine.

As mentioned, I’ve been through this hair loss thing a few times, so I wanted to go into the salon with some ideas. And Pinterest makes it so easy, I figured why not choose some new do’s that I could get excited about. If you’re going to cut, you might as well rally around the idea and get some momentum going! In fact, this is such an important step in the whole process, that even Johnny has picked up on it. About six weeks ago, when he knew I was ready to make a move, he took a secret trip to the drugstore, and came home with a stack of the latest issues of short hair magazines. He confessed that he had to go to two different stores to find “the right ones”. The guy at the checkout even gave him a second look as he set the magazines on the counter, asking them if they were his. (Maybe Johnny should make a pinterest board of his own!) How lucky am I to have a guy who knows, cares, and understands?!

Here were the top three contenders:
Graduated Bob Haircut for Thin Hair
12 Graduated Bob Hairstyles That Looking Amazing on Everyone | Hairstyles Weekly

short haircuts 2014 Sexy Short Hair Styles 2014

With my pictures pinned, and the other two things in place, I booked a consultation with my stylist, to coincide with hair appointments I’d booked for the girls. She was happy to see all of us, as always, but when I unpinned my up do and lifted up the strands for her to see what we had to work with, she said, “Oh my, Sara. What happened?” We’d been there for 20-30 minutes, and she hadn’t suspected a thing! (I suppose that’s the power of the up do!) Of course, I explained that I’d been sick, and she understood completely, and started strategizing. She concluded that she didn't want to do anything too drastic, as she said I really didn’t have enough growth to go short at this point. But she confidently said that I had plenty to work with, and we came up with a plan. I booked an appointment for the following week. 

I left knowing where I was headed, and I had a week to come to terms with it. Just the way I like it!

And you know, that initial reaction of hers? It was exactly what I needed to hear. It made me feel justified in the way I've felt over the past 8 months. My hair loss is significant. It is disarming. And it isn’t something that I need to just brush off. It is a big deal, that takes a lot of courage to deal with, and I shouldn’t be ashamed of struggling to come to terms with it. And nor should you!

Friday, October 24, 2014

A turning point in my lupus hair loss: Getting a new 'do!

Hooray for change!

I took a much-anticipated trip to the hair salon last week, and I am so pleased with the results. It was as if my hair dresser found strands of hair I didn't even know I had! She gave me a brand new hair cut that left me feeling fun, fresh, and more confident about my looks. I hadn't realized how "shabby" I'd felt, until she cut my hair. I caught a glimpse of my new 'do in the mirror, and immediately thought, "There's the old me!!"

The trip wasn't uneventful, mind you. Mustering up the courage to actually let my hair dresser see the hair loss I'd been masking for months was tough. Even allowing the shampoo girl to handle my thinning locks made me a little nervous and very self-conscious. We had some tears. And then a few more. But we also had a few laughs, too. In the end, unpinning that permanent up do I've been wearing for months was actually a very cathartic experience.  I'm so glad I finally went, and kudos to my hair dresser for her patience, compassion, and sense of humor. She was so wonderful!

Because the first hair cut you get after hair loss can be so traumatic and emotional, I think the subject deserves a series of posts. I'm going to break up my most recent experience into three parts, and I'll call the series: "Before, During, and After: The First Cut after Hair Loss".

While I hope, with all my heart, that I don't have to reference these posts for my own purposes any time soon, I'll at least know I've documented the steps. If there is a next time, I won't have to waste precious time and energy trying to figure out how best to deal with it.

For me, mentally preparing for the Before, During and After is key. It gives me something to focus on and work toward while my loss is happening. It also allows me to manage my expectations once I get up the courage to actually go to the salon. And finally, it lets me embrace my new 'do, whatever the outcome. If it's great, I enjoy every minute of it. If it's a transitional cut, I remember that hair grows. And life goes on.

I will admit that this bout of hair loss, while not the worst one I've experienced by any means, left me feeling quite deflated. Maybe it was having a milestone birthday at the same time. Maybe it was seeing a few more age spots and wrinkles than the last time I had significant hair loss. Or maybe I was just more self-conscious with the girls around, secretly hoping that I wouldn't shock or disappoint them if my hair fell out to the point of no return. From wherever the fear stemmed, I write these posts to try and make that first hair cut after hair loss a little more palatable...for all of us!

Next week, look for the Before, During and After posts. I thought about video taping my trip to the salon...but reality TV star, I am not. I'm sure the tears would have been good for ratings, though!

Wednesday, October 22, 2014

Aching joints deserve a break...with one of these handy jar openers!

I'm not one for "gadgets", but this thing is fabulous. I went to open this jar of sauce last night, and it was stuck. I tried one way, then the other. And then I remembered my thoughtful sister had just given me this jar opener. It was magical! It opened with ease, and I couldn't believe how the top just popped right off. So here's my endorsement:

If you have sore joints, get one of these things. If you have swollen joints, get one of these. If you have weak wrists, bad knuckles, shaky hands, sensitive fingertips...get one of these!

Here's the link to one just like it on Amazon. For just under $8.00, I say order away! 

Monday, October 20, 2014

Birthday party success - learning my lupus limits once again!

Okay. I'm not going to beat around the bush. I overdid it last week.

(But I had fun doing it!)

On Saturday, we threw Deirdre and Bernadette a joint birthday party for their friends. It was a Halloween theme, and my girls and I had a blast prepping for the celebration. Back in September, I'd suggested (though some might view it as pleading) to Dee and Bee to rethink their original plan of having a Frozen birthday party. I'm fine with Frozen...and I'm fine with Disney themed birthday parties...but the girls were already arguing about who would be Elsa, who wouldn't be Anna, and how many Olafs would be in attendance. So in an effort to redirect their energy toward productive party planning, I suggested we do a Halloween theme. They agreed, and off we went to Pinterest to find every Halloween party idea every conceived. (Bernie now looks over my shoulder, finds pictures she likes, and says, "Pin it, Mom, pin it!)

The good news with Pinterest is that you don't have to reinvent the wheel. The bad news is that you're tempted to take that wheel and run with it. We actually did a pretty good job of culling through all of the ideas. We didn't choose anything that required fondant, a staples gun, or wood work. But the projects we did choose still took time, and once you complete one, and it turns out great, all you want to do is get to work on the next one!

Below you can see just some of the party touches we went with (you can see my full pinterest party board here) and here are the lessons I learned along the way:

1) Call in recruits when you need them:

It was right about Wednesday of last week when I decided that I was going to need some help. I'd woken up with a swollen pointer finger and thumb (my paper cutting digits!) for three mornings in a row, and it was obvious that I had to call it quits on the cut-outs. So I asked my sister if she could send over my 10-year niece, the party prepper of all party preppers, to help. She (and my sister, who can never resist a creative craft), came to the rescue on Thursday evening, and we finished up every last goodie bag and pumpkin cut out. It was fun to work together, and I woke up Friday morning without a swollen joint in sight. I felt 100% going into the party, which is always a good way to greet 20 princesses who show up at your door, in costume!

2) Stop when you've had enough:

I had a few things on our list that we just couldn't get to, and I had to be okay with it. One of the last things I was going to make was this awesome tri-colored spooky Halloween bundt cake that I'd been planning for weeks. But once we got to Thursday evening, it was obvious that choices needed to be made. I knew that buying a cake would eliminate a ton of time and energy (not to mention another round of kitchen clean up), so I opted for a pre-made Costco sheet cake special, and it turned out great. It was the best compromise I made for the entire party, and I felt really good about recognizing my limits, and finding a good, time-saving, joint sparing solution.

3) Let the kids help (a.k.a. don't be a perfectionist!):

Almost every party touch we used allowed the kids to contribute in some way or another. They glued googly eyes to ghosts, hole punched hanging bats, painted candy corn, stuffed goody bags, cut Frankenstein's stitches, scoured the yard for "witch's broomsticks", and shopped for every prize, cookie, and decoration we bought. It was REALLY fun to do it together...and I let them cut, glue, color, and trace everything. There were outlines that weren't quite straight, eyes that were more than crooked, and cut-out mice that were placed in places a mouse would NEVER be, but we just went with it. They were really proud of their participation, and I certainly wouldn't have done it, had they not be as willing or able. I even think they might be up for another Halloween birthday party next year. (Although at ages 4 and 6, I'm not counting on it!)

Tangerine pumpkins, candy corn bark, caramel apple cups, pumpkin spice puppy chow

Pin the face on the pumpkin AND Pumpkin bowling
Witch's Broom Favors

Candy Corn Count AND Name that pumpkin!

One happy birthday girl!
Another happy party girl!

Friday, October 17, 2014

Pillfold House - Funny where the #pillorganizer name shows up!

£350 pw fees apply

1 bedroom flat

Pillfold House, Old Paradise Street, London, SE1

Furnishing: Furnished or unfurnished, landlord is flexible
Added on Rightmove: 18 September 2014 (2 days ago)
Atkinson McLeod is pleased to offer to the market this gorgeous 1 double bedroom new built apartment. Situated just behind the Albert Embankment and just a stone throw away from the river and Westminster. 

I couldn't resist sharing this rental property listing with you. It came up on my Google alerts for "pillfold", and it made me smile. Looks like there are "Pillfolds" for sale everywhere! Here's the link, in the event that you are indeed interested in the Pillfold House, but the property appears to have been scooped up already. I guess all pillfolds are hot commodities!

I promise to return next week with a couple of good posts. This has been such a busy two weeks for me - given the girls' birthdays, their dual party this weekend, and a gift show last weekend. But I'll be fully recovered by next week, and I look forward to telling you all about it in detail. Talk soon and have a great weekend!

Wednesday, October 8, 2014

Another birthday for Deirdre. Six years and counting...

The first full week in October is always a busy one in the Gorman household!

As you know, Bernadette turned 4 on Monday, and I pleased to say that Deirdre turns 6 today. Woohoo!! Here she is as a wee one:

And here she is today. Could she really be this grown up?! 

She's so grown up, in fact, that she'll be helping me at the Pillbag show this weekend at St. Louis Church in Alexandria, VA. Saturday, October 11th marks their annual Community Fair, complete with a gift and craft show where you'll find Deirdre and me behind of colorful array of pink-lined pillbags! In addition to the marketplace where many vendors will be set up, there will be plenty of stuff for the kids to do: Rides, Games, Food from 5 Guys Famous Burgers, authentic Pupusas, Beverages, Ice Cream, Popcorn, Face Painting, Pumpkin Decorating, Crafts, Gifts and so much more! Almost makes it impossible to miss, eh? 

Here's where we'll be. Make sure you stop by and say hello!

WHAT: St. Louis Community Fair

WHERE: St. Louis Catholic Church
2901 Popkins Lane
Alexandria, VA  22306

WHEN: Saturday, Oct 11th, from 11am - 3pm

See you there!

Monday, October 6, 2014

Bernie turns 4 today! Pillbag sale in her honor!

It's hard to believe my baby girl Bernadette turns four today!

I swear she was small enough to fit in a laundry basket (like so) just a few days ago. But, oh, how time flies.
Here she is now, all grown up. (And below, looking REALLY grown up!) 

In honor of Bernadette's fabulous 4th birthday, let's have a pillbag sale! Take $4 off (that's a 10% savings off a pillfold!) any purchase on during her entire birthday week (now through Sunday, Oct 12th). Just be sure to enter the code "FOURFORFALL" during checkout. She'll be so excited you ordered in her honor! (Her favorites are the Zoe and the Amelia - FYI!) 

Friday, October 3, 2014

Lupus fatigue: How to respond when your kids have heard it a thousand times

This summer, the girls and I were creatures of habit. Every other weekday, we'd drive over to the pool around 11am. We'd swim a little, eat a little, and swim a little more. Then around 1:30, the girls would head to the showers, and then we'd leave the pool just in time for our 2pm babysitter...and my mid-afternoon nap. Because we did this all summer long, we truly had it down to a science. Between 1:54 and 2:06pm, you could always find us in the car, headed for home.

During that short car ride home, I would inevitably feel my fatigue set in. Chalk it up to the warm car, the exertion of energy during the past 3 hours, or the fact that it was simply time for me to sleep, I would always utter something like, "Girls, I am TI - erd" (phonetically written, of course, for accurate pronunciation!) about half way home.

One afternoon, Deirdre, feeling a little more prickly than usual, responded to my comment by saying, "Mom, you're always tired" in a slightly accusatory tone.


Double Hmm.

I thought about what she said, and in the next 30 seconds, I reviewed my choices:

1) I could get defensive. I could fire back by saying that I am not always tired. I could elaborate, listing all of the times that I am clearly not tired at in the morning when she wakes me up and we go down for breakfast, or when we play for three hours at the pool, or when we do fun stuff at night, or when I take her out to dinner, or practice gymnastics, or go to the park. I could force her to see just how un-tired I really am, making her think twice about her comment.


2) I could feel guilty. I could convince myself that I am always tired, and that my fatigue really infringes on my children's happiness. I could tell myself that my afternoon nap is having adverse effects on my kids, and criticize myself for using an afternoon babysitter every day. I could pretend that having a chronic illness and raising kids is absolutely, positively impossible.
(Oh, what nasty things guilt can do...)


3) I could take a moment to collect myself, identify why she said what she did, and realize that there's a pretty logical reason behind it. In essence, I could call her out, in a nice, loving, mom kind-of-way.

Opting for number three, here's what I did:

I said something like,  "Oh, sissy, you're right, I AM always tired...on the ride home from the pool! It's 2:00pm, which is my nap time. Good thing we go to the pool early in the day, so we have plenty of time to play, eat, and swim, all when I'm not feeling tired at all. Good thing, right?"

And she said, "Yeah. That IS right!  So now you can take a quick nap, and then maybe we can all go back to the pool tonight. Daddy can even come. Want to eat dinner there?"

Then she paused, and said, "Mommy, I love you."


Now, while I don't always think things through so clearly, and #3 isn't always the best way to respond, this time, I felt it was the right thing to do. The situation also made me a little more aware of what I was saying and when. After all, I didn't even realize I was saying that I was tired each time! The girls are about as understanding of my naps as possible, so if it helps that I skip voicing my thoughts now and then, so be it!

Wednesday, October 1, 2014

Great interview from the world of lupus research - broadening the lupus diagnoses net!

I'm pleased to share a link to an interview, featuring one of my favorite lupus experts, Dr. Susan Manzi. Dr. Manzi always has something interesting to say, and a great way of saying it, and this interview is no exception.

Here, Dr. Manzi elaborates on the new diagnostic criteria that will ideally help people get a more accurate diagnosis of lupus faster. This new criteria allows for a broader, yet equally as specific diagnosis of systemic lupus by catching more versions of the bio-markers that have historically indicated a diagnosis of lupus. (For example - instead of the malar (butterfly) rash being the only rash that is an official bio marker of the disease, the broader criteria allows for several other forms of rashes (that are perhaps more common) to be bio markers. (Interestingly, in my 14 years, I've never had the malar rash, but I've had plenty of other rashes along the way. While I certainly don't need any more proof that I have SLE, it's good to know that one of those might count toward a diagnosis!)

Dr. Manzi goes on to say that historically, a positive ANA has been considered "the lupus test", and is typically a pre-cursor to exploring whether or not someone has lupus. But she points out that it's estimated that nearly 32 million people have a positive ANA, while only 1.5 million actually have lupus. That alone tells you how mistakenly broad the old "lupus test" has been!

Watch the video below, you'll learn a ton! As always, thanks to Dr. Manzi for putting the latest and greatest lupus developments into layman's terms.

VIDEO: New diagnostic criteria catch systemic lupus earlier : Family Practice News