Saturday, December 31, 2011
S'Marvelous.....S'Wonderful!
Guys.
Such excitement over here at our house, I can't begin to tell y'all.
We have already been up to our elbows in planning for my son's wedding in June, when, guess what?
Daughter #2 is now flashing a beautiful ring on her left ring finger!
We're thinking September! I'm going to be a mother-in-law TWICE this year! Woot! Our family is gaining two spectacular additions.
And each wedding is exactly opposite the United States of America from each other - one in the Pacific Northwest, the other in New England.
I am going to need.......something......to see me through this next year of exciting, wonderful events.
Mango margaritas? Slush? Home made butter mints?
Nah.
Prayers. So keep 'em coming, folks.
My goodness.
Friday, December 30, 2011
Sjogren's Reality
Dang.
I read this story about Venus Williams's decision to withdraw from yet another tournament with some disappointment, yet not surprise.
Tennis great Venus Williams withdrew from the second-round match at the U.S. Open in August 2011 and announced that she had been recently diagnosed with Sjogren's syndrome. She has not competed in a tournament since and fans were getting ready to see her take to the courts in Auckland, New Zealand for the ASB Classic.
Unfortunately, the tournament website is announcing that she has dropped out due to health issues.
The article, written by fellow sjoggie Deborah Braconnier for Yahoo Sports, includes an interesting perspective from one who deals with the difficulties of autoimmune disease on a daily basis.
Unfortunately, the tournament website is announcing that she has dropped out due to health issues. As someone who suffers with Sjogren's as well as other autoimmune conditions, I can understand what she is dealing with and cannot say I am surprised with her withdrawal.Sjogren's is not something that a simple week's worth of pills will cure and eliminate. It is not a condition that has a cure. It is a complicated disease that has no magic medication. While there are medications that are used to treat the symptoms, not every medication works for every person.Treatment of autoimmune diseases becomes a game of sorts. Your physician will give you this medication to try along with that one and maybe they will work, maybe they won't. For many people suffering with autoimmune conditions, finding the right combination of medication can take years.
I have to say that as I read earlier quotes by Venus suggesting that she had plans for an immediate return to the competitive tennis circuit with some skepticism. Not because I wanted Venus to be unsuccessful, but because I have voiced some of the same goals early on in my disease: I AM going to return to my job. I WON'T let this disease rule my life. I WILL NOT give in! And, spite of my resolve, things just didn't turn out the way that I had hoped.
I don't want to insinuate that I have capitulated to all the challenges that Sjogren's and autoimmune disease has set before me, but I have to admit that my life has changed in ways that I never could have imagined as I was making those bold proclamations.
I did have to quit my job. I did have to make drastic reductions in my hobbies and interests and activities. I did have to allow Sjogren's to limit me in certain respects.
Venus, I hope that you will not have to be making the same concessions in your life that I have as a result of your autoimmune disease. I - and all of your fans - will understand if you find that Sjogren's has changed your game permanently. But also know that even though things may have changed - life goes on. Not better, not worse.........just differently. That's all.
Every sjoggie has come to the same conclusion.
Thursday, December 29, 2011
Fatigue VS Flare
I received an email from Vivian yesterday, in which she asked this excellent question:
Julia, How do you tell a real Flare from just feeling rotten for several days?
Wow. That's a really good one. And I'm still mulling over my answer. Here's how the Lupus Foundation of America defines the term flare:
“A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or laboratory measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.”
For most of us, as we gain more experiences with our body's reaction to Sjogren's syndrome and other autoimmune diseases, we become more proficient in reading the signals that our bodies are sending to us. Unfortunately, this means that we have to actually experience several flares vs. other illnesses vs. exceeding our energy limits before we can tell the differences.
I think that in my particular case, what I am experiencing right now is a direct consequence of just stretching my energy reserves too far. I know this only because it happens to me repeatedly and I am a very slow learner.....
When my energy levels are depleted, the only thing that can restore them is two or three days in which I do the bare minimum things: I dress. I eat. I sleep. I sleep some more. And sleep some more. And each day I try to objectively gauge my response to slowly increased activity. If I feel my face go ice-cold and my skin becomes clammy and sweaty, I head back to bed pronto. If not - then I try to slowly increase what I do each day until I reach the activity level that is mostly normal for me. Today, I am able to do more than I have been able to do over the last two days, which tells me that I am successfully replenishing my energy stores.
So how is this different than a flare? I suspect that for each of us, the answer is unique to our own disease experience.
For me, a flare is accompanied by more symptoms than just the need for rest, exercise intolerance, and increased brain fog. I usually run a low-grade fever (100 degrees f. or thereabouts) and experience malaise - that shivery, achey, "coming-down-with-the-flu" feeling that doesn't respond to tylenol or ibuprofen. My joints hurt more than usual. It's one of those rare occasions when my appetite goes away. If I look at John and tell him that I'm too tired to eat, he knows that I'm heading into a flare. I may have more swelling in my finger joints and may develop more skin lesions.
My flares last longer than just a couple of days, and when I'm fairly certain that I'm in a flare, I contact my rheumatologist, who usually has me come in for an appointment which includes an exam and possibly lab work or other diagnostic tests to measure my disease activity.
In the past, my doctors have instructed me to increase and then decrease my prednisone dosage to ease some of my flare symptoms. This is commonly referred to as a "burst and taper" treatment, and has been helpful for me.
What answers would you have for Vivian? How can you tell the differences in your disease activity? And how do you ease yourself back into normalcy?
Hang in there, Vivian. We all know how you feel, having been there and done that.
Keep us posted.
Wednesday, December 28, 2011
I Can't Get Away With Anything
Amy commented yesterday, "Ouch. Sounds like you're in a hell of a flare. Sorry. Feel better!"
So, so busted.
Yep. I am indeed down for the count. I should know better than to try to gloss over this latest crash and burn incident. I am not certain whether this is just the result of overextending myself last week, or if this is an actual flare. Time will tell and much of that time will be spent resting.
Boring.
Hey......does anyone know some good jokes? That I can inflict on John everytime he checks in on me?
Tuesday, December 27, 2011
Another.....
.....post written from my snuggly bed,tucked in and ready for a good 12 hour nap. See y'all tomorrow, energy permittng.
Carry on, sjoggies.
Monday, December 26, 2011
Contented Snoring
Guys. As per my usual holiday routine, I am blissfully sleeping off a wonderful yet tiring weekend. See y'all tomorrow.
Sunday, December 25, 2011
Saturday, December 24, 2011
Minty Merry Christmas
Do y'all remember........gosh. This is the season when reminiscing is one of my favorite pastimes.
Well, maybe one of my second-favorite in line between eating all of the Christmas goodies around here.
So my latest memory that had me wistfully remembering and then googling recipes online was the flavor and creaminess of Kraft - or were they Brach's - butter mints. Mom would buy a box of them for special occasions and would put them out in small crystal dishes. We were only allowed one or two at a time, but if left unsupervised, I would snarf as many as I could get away with. They were not the hard little pillowy after dinner mints that you see around everywhere these days, but were firm yet creamy. They were most often buttery-colored but sometimes you could buy special "Party" butter mints that were pastel colored.
So as I was making my usual round of Christmas goodies, I have noticed this year that my sense of taste is continuing to be less acute. But a few tastes - sweet and mint, for example - continue to be very tasty and enjoyable. Which prompted the search for the recipe for the best mints that I have ever had.
And here they are, Buttermint Twists, found here:
Divide dough in half. Beat red food color into one-half of dough. Continue beating until dough is pink. Beat green food color into other half of dough; beat until dough is light green.
Place dough, 1 color at a time, on surface lightly sprinkled with powdered sugar; knead until smooth. Cover with plastic food wrap to prevent drying out. Roll 1 tablespoon of each tinted dough into 4-inch rope. Gently twist green and pink ropes together. Carefully continue rolling and twisting rope to a 10-inch rope. Add more powdered sugar when rolling, if necessary. Cut diagonally into 1-inch pieces. Place twists onto waxed paper-lined baking sheet. Repeat with remaining dough. Let mints stand uncovered at room temperature until surface is dry (6 to 8 hours).
These things are delicious. Spectacular. Fabulous. Also very quick to make if you're looking for a last minute, kid-friendly, easy-to-make treat to have on hand.
Enjoy. We did.
Friday, December 23, 2011
It's Wonderful
Last night, John and I and Greg and Terese and some of our kids had our annual "go out to eat at a great restaurant then ogle Christmas lights and then exchange gifts and enjoy a few adult beverages and watch old Christmas movies" night.
Ahhhhhh.
It IS a wonderful life, George Bailey.
I am writing this as I am snuggling into bed using my phone and since I have no clue how to import an image using this method, everybody insert your own mental picture of a perfect holiday evening here.
See y'all tomorrow.
Thursday, December 22, 2011
Fudge FAIL
I have never goofed up this fudge recipe ever.....until today. Of course, I have never tried to cut this recipe in half....until today, either. And I have been making this recipe for at least twenty years! I would like to place the blame for this FAIL episode on brain fog, but actually, I seriously think that I measured accurately. I used a kitchen scale and specific measuring cups. Hm. Mom always has said that there's "some recipes that you cannot halve, or double!" So all you really excellent sjoggie cooks out there - is that the case?
Rats. What a grainy, greasy mess. Good thing daughter numero one is home - she'll have to try again, this time with a full batch. I showed this gloppy goop to John and he eyed the pan with dismay, then put his hand on my shoulder. "Babe. You may be forced to make a whole batch.....but don't worry hon. I'll throw myself on this grenade for you. I'm your man for the fudge detail."
Hoo, boy.
Get cookin' girlfriend:
Mmmm. Joanne's fudge:
4 1/2 cups granulated sugar
1 pound (four sticks) butter
1 - 13oz can evaporated milk
18 oz good quality chocolate chips (I use a blend of regular chocolate chips and some dark chocolate)
1 Tablespoon vanilla
1 1/2 cup chopped nuts
Put sugar and milk in heavy sauce pan. Bring to full rolling boil and boil for 10 minutes, stirring constantly.
Remove from burner. Add butter and stir until melted.
Add chocolate chips. Beat with mixer for ten minutes until thick. Stir in vanilla and nuts, if desired.
Pour into a foil-lined or buttered 9 x 13 pan. Chill.
Om nom nom nom nom nom nom.....
Wednesday, December 21, 2011
We Need The Words...
Yesterday, I received this letter from a reader:
I just did a search for a link between Sjogren's and sweating which led me here....so thank you. I was diagnosed about 5 years ago with primary SS and am also having major problems with sweating (hot and cold)but it makes my skin feel very strange - almost as if I am covered with a layer of plasticene and my skin can't breathe through it. It makes me feel so ill I can't do anything at all. Sounds from your comments that it may be connected to SS. Thank you.
Reader, what an excellent description of the skin/sweat/Sjogren's connection. Anyone who has experienced it, knows just what you mean, myself included. I used to try to describe it as a slimy sensation, but then that's not exactly right either. Some of these very annoying and perplexing symptoms just defy description.
Do you have symptoms that are difficult to explain yet have somehow found a way to describe them?
And when you do, share your vocabulary with the rest of us!
Tuesday, December 20, 2011
Pink Angels
Guys, I've been trying all day to think of something remotely useful and Sjogren's related to post, but to be honest with you, my brain is off in Santa-land dancing around with visions of sugar plums and all that seasonal stuff. I have a sneaking suspicion that my Bratty Inner Child Julia is largely to blame for this.
Sorry.
So you're stuck with my posts this week which will be rather useless. Like, "The Worst Nativity Scenes EVER". Here's a choice example:
Monday, December 19, 2011
A Christmas Poem. By Julia.
Ahem.
'Twas the week before Christmas,
and all 'round our house,
Every light was a-flashing,
scaring every neighbor mouse.
The songs were all tucked
in the computer with care,
causing all of the LEDs
to blaze with a flair.
And John in his sweatpants,
and I ready for a nap,
had just settled in
to watch the nightly flap.
The kids who should have been
all nestled in bed,
were dancing in the street
watching lights overhead.
The moon on the breast
of the newly-started show,
gave the luster of mid-day
to the objects below.
When out on the lawn
there arose such a clatter,
Julia sprang from the couch
to see what was the matter.
When to what did her wandering eyes
should appear,
but a glowing pink flamingo
beaming right back at her!
He was dressed all in pink
from his neck to his toes,
and perched on his head
were some Christmas clothes!
A little red hat
brimmed 'round with white fur,
was nestled on his head
where there should have been an ear.
I rushed to the window
and grabbed my iPhone,
to snap some pictures
of what John had done.
"It's PINKY!" I cried
as I pressed nose to the glass,
and wondered aloud
if I should take the pic with a flash.
His feathers, how pink!
His cord all plugged in!
He stood so proudly
wearing a big flamingo grin!
John closed the curtains
and said to his wife,
I zip-tied that bird
to the porch nice and tight.
So not one more word
about Pinky will I hear,
For he's attached to the show
and will be each year.
John says, "Every time a bell rings, a flamingo gets his wings!"
(They were stuck behind the bicycles in the garage.)
I do love my flamingo-illuminating hubby. Thanks, bun.
Sunday, December 18, 2011
It's A Baking Theme....
....to this weekend. First a gingerbread house, and then a cookie party.
Yesterday, my friend Susan invited me to her annual pfeffernuse cookie baking party. And, as usual, it was a real hoot.
Susan's home was beautifully decorated, Christmas music was playing softly in the background, and the air was fragrant with that yummy scent of baking treats. We turned out some spectacular cookies.
Oh, and since several of the decorators were teenaged boys? Some of the cookies were.......unfortunate. Of course.
Yes. That is indeed an armless gingerbread boy. And an exploding bomb.
Festive.
Saturday, December 17, 2011
Up On The Housetop.....
Today I made and delivered a gingerbread house to my friend, Betty.
Betty has received all sorts of gingerbread buildings - houses, barns, and churches from me for the last twelve years. This year, I almost forgot, which would have been a very, very bad thing. But luckily for Betty and me, Terese reminded me earlier this week. What a woman.
So I dug out my recipe and pattern, although I think that I could probably whip up a batch or two of gingerbread without looking at the paper. Like my recipe? I've been making these little houses for the last twenty nine years, and yikes. Those patterns have seen more pans of hot gingerbread than I can imagine.
Twenty two years ago, my friend and I decided to make a zillion of these little houses and sell them at a couple of craft sales, and after we had ripped out a multitude of them, I decided that I could construct a gingerbread house in my sleep. Our little town even ran a story in the newspaper about us.
Not many newsworthy events happened around there. What can I say.
What I do remember is that I took the gingerbread proceeds and re-carpeted and re-countertop-ed my kitchen. It was a happy day when John and his friend Randy hauled those orange formica countertops out of my house.
Yessssss.
So I felt happily nostalgic as I baked and constructed and decorated. What fun.
I always put a goat on the roof of Betty's houses. She raises goats and expects to have them represented somehow in each of the gingerbread creations.
So after the goat installation, I tucked the little house into Goldie's front seat and headed out to Betty's house.
Goldie, the house, the goat, and I made it out to Betty's in one piece. Which is not always the case - I remember one year as I was carrying a particularly large gingerbread house out to the car, (not Betty's, thank goodness) it slipped out of my hands and CRASHED all over my garage floor. Oh, the horror.....
I usually get Betty's house out to her much earlier in December, so I apologized for being so tardy. And Betty, being the very direct person that she is, asked what my problem was this year. We were out looking at her amazingly adorable baby goats as we were talking.
Well, Betty - do you know what Lupus is?
"Sure. I have a friend with that."
Ah. So you know about Lupus.
"Sure. It made my friend CRAZY." She crossed her arms over her chest as I scratched Mary the baby goat behind her ear. "Are you going crazy??"
Um, I suppose that explains a lot of things, in my case.
Betty laughed.
Actually, it just makes me feel really tired. I won't be so late next year, I promise.
We hugged, I gave Mary one last pat, and Goldie and I headed home.
Ahh. It's not Christmas until the goat is safely perched upon the roof of Betty's gingerbread house.
Let the holidays begin.
Friday, December 16, 2011
Lights, Camera, Music!
Our light show has been up and running flawlessly for about a week. It's been so much fun to see the cars lined up and down our street, little kids dancing on the sidewalk, and various iPhones stuck up in the air recording the spectacle.
Yay!
Our neighbors all gave us their permission to inflict all of this holiday cheer on everyone - every night - until New Year's, but we've tried to accommodate them too. Our music is played only via an FM frequency, so viewers have to tune their car radios to our signal to hear the music. We have a taped announcement running between songs to ask viewers to keep their stereos down to a comfortable setting, and to enlist their help in not blocking our neighbor's driveways, etc.
But everyone seems to take it all in excellent spirits. Sometimes, as we go about our evening inside the house, I forget briefly that the show is even running, until I hear little kids squealing with laughter as they dance or moms and dads singing along.
Sigh. THAT's what the holidays are all about, people.
Here's a few of my favorite songs this year, but you can click through to Vimeo to see them all.
Curse of the Ice Queen from John Oleinik on Vimeo.
Holly Jolly Christmas from John Oleinik on Vimeo.
Carol of the Bells from John Oleinik on Vimeo.
Thursday, December 15, 2011
YouTube and Spoons
At a 2010 NC Lupus summit, author Christine Miserandino gave this keynote address, in which she explains her spoon theory.
I've read Christine's spoon theory before and have often thought what a good analogy this is for living with a chronic illness, but I appreciate it - and her - even more after listening to her discuss it in person.
Enjoy. Share this with people who need to understand.
Wednesday, December 14, 2011
Why, Yes, Amy!
Amy left a comment on yesterday's post regarding the little light show at our house:
Wait, isn't there supposed to be a glowing pink flamingo?
Why YES, Amy! You are 100% correct! I WAS PROMISED that Pinky, my glowing pink flamingo, would figure heavily into this year's Christmas light show.
HERE'S A PICTURE OF WHERE PINKY IS RESIDING AT THIS WRITING:
Yes, there he is. Stuffed between the golf clubs and the soccer balls, poor Pinky. Note that he's missing his wings. And sporting a very poorly placed electrical cord.....
Personally, I think he would look great maybe here,
or here. Yeah. He could be a greeter at our front door!
Hm. Now if ONLY SOMEONE would take the hint......
Tuesday, December 13, 2011
It Keeps Going, And Going, And Going......
Our Christmas light show, that is.
I'll post a video as soon as the mad electrical scientists over here quit ADDING JUNK. Er......I mean cool features.
Mercy.
We realized today that our little local newspaper will be including our show in a list of Christmas lights in the area, which of course meant that John and son are contemplating how many more things they can include without blowing every circuit breaker in a city block radius.
Is there NO STOPPING THEESEE CARAAAAZYY MEN?
No. There isn't.
Monday, December 12, 2011
The Health Activist Awards from WEGO Health
Quit, Already.
My face is melting again.
Way back early on in my autoimmune adventure, one of the first symptoms that was especially troublesome for me was the fact that any activity whatsoever would result in profuse perspiration on my face, trunk, neck and scalp.
It was so embarrassing. I was still working at the time, and a simple walk down the hall to my office would leave me mopping my face as soon as I sat down at my desk. My hair would become damp and sweat would literally drip from the back of my neck if I didn't keep dabbing and wiping with the big white cotton handkerchiefs that I began toting around. I quickly gave up on Kleenexes since they would leave white fuzzy stuff all over my face. Attractive.
I learned that in order to begin my work day looking presentable, I had to do things in stages: Shower. Wait. Dress. Wait. And forget the whole makeup thing until at least another hour had passed, or the exertion of just getting ready for the day would melt that makeup off my face as soon as it was applied, if I could get it on at all through all the perspiration constantly forming and dripping down my forehead, cheeks and nose.
So I'd drive to work while the latest round of sweat dried (ew. sorry.), then sit in the parking lot applying makeup by the light of the car's vanity mirror. Some days the makeup job was particularly....interesting, given that day's light and the colors of eye shadow that I had tossed into my purse.
But in the end, I should have saved the time and effort and expense of even trying to put the stuff on at all, because after an hour, everything had melted and dripped off my face yet again and was mopped up by and covering my white hanky.
Slowly, that delightful (?) phase of prolific perspiration diminished somewhat over the years, only to show up during flares or particularly vigorous activity. But. Gradually over the last month or so, it's returning.
I hate this.
And even though I rarely worry about keeping makeup intact on my face, those few times when I do want to appear somewhat well-groomed, this is a real pain. I wonder why it's re-appeared?
Another item to add to my question list for Dr. Young Guy.
Sunday, December 11, 2011
Hallelujah!
Pre-Sjogren's dryness and fatigue, I used to sing right next to her in the alto section. We used to have a grand old time. Although our repertoire used to vary each season, we used to begin each year with Handel's Messiah - all three hours of it. And I loved each and every minute. They still begin each season with this gem.
For someone who loves to sing, there is no better experience than to be standing on risers, in the midst of a very large choir consisting of very talented individuals, (I have no idea how I managed to be in there...) facing a live orchestra and a standing-room-only venue singing the Messiah.
Sometimes, surrounded by by the power of that many voices and instruments creating such spectacular music, it was difficult to stifle my emotions and sing past the tears of joy.
Ahhh.
A zillion years ago, we made a recording. I have put together a soundtrack of our rendition of the Hallelujah Chorus. If you listen carefully, you can hear Terese and I belting out those alto parts. (Yes. Among the forty-some other altos. Sure.)
Now when I listen, instead of tears of joy, I blink back tears of regret that I didn't appreciate those times more.
I miss some of my pre-Sjogren's life...........so much.
Saturday, December 10, 2011
Oh Christmas Tree, Oh (Dumb Stupid) Christmas Tree.....
Pre-lit, my eye. Dumb stupid Christmas tree. And it's crooked.
When John came home for lunch, he took a quick appraisal of the situation and declared that either we replace all the lights which were permanently attached to the tree or we buy a new tree.
DUMB STUPID Christmas tree.
He headed back to work, promising me that he would box the dumb stupid thing back up and go out tree shopping with me later in the evening. After he worked late and then did some more work from home, poor guy.
So I sat with my coffee cup eyeing that dumb stupid tree mulling things over and came to the conclusion that I should save us both some significant money and time by just raiding our stash of Christmas lights in the garage:
.....and throw the things on the tree myself. Putting the lights up on this tree couldn't really be that hard, I told myself. So I snagged several boxes of white lights and dragged them into the house. After which I spent an hour or so re-living all the frustration that I have inflicted upon my dear husband for ...... (did anyone figure out how long we've been married?).....all these years.
I finally decided that once you get all the tinsel and garland and twelve billion ornaments on this tree that nobody is going to notice where every little light bulb is on this thing.
Hm. That sounds remotely familiar. Wonder where I have heard that before?
Friday, December 9, 2011
Still Catching Up
I'm still cooling my heels after last weekend's adventures. So rather than tax my brain cells to write anything coherent, I thought I'd just put up some more pictures from all that galavanting around.