Sunday, January 31, 2010

This Medicine Doesn't Fit in a Bottle

I'm learning that to deal successfully with autoimmune disease boils down to one major strategy - managing my energy.

It seems as though my body meters out it's energy in ways I hadn't realized with autoimmune disease. There's the obvious energy users like exercise and physical exertion, yeah. But then there's other less obvious drains.

It takes energy to concentrate.
To remember stuff.
To make decisions.
To hang around with needy, cranky, negative people. Whew - I can think of some folks that are walking energy sponges. Although they may be energized by living a life constantly full of conflict, I become bone tired just hearing about it all. I've had to consciously limit time spent with these kinds of people for many reasons, but most importantly, to preserve my energy reserves.

I have found that I can protect and even increase my energy by surrounding myself by positive people. People who are genuinely interested in and for the most part, really like the world around them.

Special people like Greg and Terese.

I know. I pick on them constantly here. (And I'm not saying that they don't deserve it....) Hehe. But for me, spending time with them and people like them infuses me with something far more therapeutic than any of the pills that I pop every day.

Acceptance, humor, integrity, generosity, and intelligence make these folks truly good medicine.

Saturday, January 30, 2010

This One's a No-Brainer

Get a load of the title of this article: Should Surgeons Warm Up Before Surgery? 

Um. I would say yes.

"Even experienced surgeons derived benefit from the warm-up and there was an error reduction in surgical skills." 
In that study, the researchers found that a warm up comprising 15 to 20 minutes of simple surgical exercises involving both psychomotor and cognitive skills before an operation raised surgeons' alertness to a higher level for surgical procedures and also helped fatigued surgeons perform better.

I would want MY surgeon to do at least twenty deep knee bends and solve one of the Sunday - (not the easy schmeezy Monday) New York Times' crossword puzzles before any invasive procedure commenced on my person.

Image of Ann Kenyon, surgeon, found here.  

Friday, January 29, 2010

Boot Straps and Chromium

All right, all right. I'll concede that the prednisone/sugar hysteria has got to come to a screeching halt.

The time has come to pull myself up by the bootstraps and just GET OVER IT. I need to put on my big-girl panties and just get a grip, woman.

So I'm not sure exactly how I'm going to do this. I know that it would be unrealistic to expect that these carb cravings are just going to magically disappear simply because I want them to. I'm certainly not going to quit taking my prednisone if it means long term control of my autoimmune disease. But I am on an active campaign to reel in some of this out of control carbohydrate bingeing.

Aside from slogging ahead with modifying my home environment - translate: keep chucking the goodies into the garbage, and choosing more complex carbohydrates when I do indulge, I'm considering taking a chromium picolinate supplement, after I check it out with Dr. S.

Although there's a plethora of questionable claims about chromium's ability to facilitate the body's ability to use insulin, my interested is piqued about this trace mineral for other reasons: A 2005 study linked decreased carbohydrate cravings in people with atypical depression after taking 600 mcg of chromium picolinate. The study was on a relatively small population, 113 people, and the study group was diagnosed with an atypical depression, which I do not believe to be a problem for me. Which may mean that the use of CP may be completely inappropriate in my case. 

There is quite a bit of literature out there that supports a decreased serum chromium level may result from eating a diet high in refined carbohydrates such as sugar, white flour, and high fructose corn syrups, however.

Hm. Sounds like the food items most frequently consumed by me lately. In that case, it could be that my chromium levels may be low and that I may benefit from taking moderate amounts of the supplement.  There is no RDA for chromium picolinate supplements at this point, although from what I can read, recent studies indicate that it is a well tolerated.

Then again, it may be just safer and simpler to eat those foods naturally high in chromium: carrots, broccoli, whole grains, and molasses. Duh.

I'll keep you all posted on what Dr. S. decides.  

Thursday, January 28, 2010

Sugar Desperation

It's getting pretty ugly over here, people.

I've made it pretty clear that I'm on a prednisone-induced carb craze right now. At least that's my excuse. I feel like Dr. Jekyll / Mr. Hyde as I continue to struggle with this.

Good Julia said: Hold it right there, young lady. Oh no, you don't. You're not going over to Rose's Deli to eat everything on their dessert menu. You're staying home. Period.

Bad Julia said: OK. I'll stay home. But I'll come up with something....bwahahahaha.....*rubs hands together evilly*

Here's what Bad Julia came up with.

I had absolutely NOTHING in my pantry with which I could concoct a cake, cookies, or desserts in general. I had no ice cream, no candy, no.......anything. Or so I thought. Until Bad Julia rummaged around in the far back corners of the lazy susan and emerged victorious. She found peanut butter, a sleeve of saltine crackers, sprinkles, and some leftover white candy coating. Very very leftover. So leftover that I really can't imagine how long it's been hiding in the kitchen.

I slathered peanut butter between two crackers, then dunked the thing in melted candy coating and sprinkled the sprinkles. After cooling long enough for the candy to firm up, the result was disgustingly delicious. Sweet, salty, crispy, creamy.....ahhhhh.

Bad Julia. Bad, bad girl.

Wednesday, January 27, 2010

More Prednisone Wah Wah Wah

I know......I've posted a couple times before about my whiney-butt experiences with prednisone. You can read them here and here.

But I'm posting about it again since Dr. S and I have come to the conclusion that this drug and I had better make nice and get along, because it appears that we will be pals indefinitely. I will be taking a low dose of prednisone orally every day.

I agree with Dr. S. - for me, the side effects of this medication seem to be far outweighed by the benefits. In spite of several burst and taper regimes, I just seem to have better control of my AI symptoms overall if I take long term small doses of prednisone.

Prednisone can indeed have some significant side effects, among them increased blood sugar, which can lead to diabetes, osteoporosis,  glaucoma, high blood pressure, insomnia, cataracts, and an increased risk of infection. You can read more about prednisone and it's side effects on the Mayo Clinic's website, found here. Dr. S. will monitor me at regular intervals to ensure that I continue to avoid these problems. So far, so good.

One of the less significant side effects is the one that I find the most troublesome. Well, the medical literature calls it less significant but I'd have to disagree. So here's the thing - when I am on prednisone I become a sugar/flour/chocolate fiend.

It's so hard to accurately put this sensation into words. I've always loved pastries and baked goods in general, but add prednisone to this proclivity and I turn into an absolute monster. Especially at night. Something happens to me at midnight when I am taking prednisone, and it's not pretty. The sight of my flannel-nightie-covered butt sticking out of the refrigerator while I'm rummaging around for anything sweet could be the stuff of nightmares for small children.

The medical literature euphemistically calls this a carbohydrate craving. I call it a stick your entire face into a boston cream pie craving. An I'm going to order and eat an entire Claim Jumper's Motherlode cake craving. 

From the Claim Jumper menu: Chocolate Motherlode Cake: A twenty-two year tradition. Six decadent layers of chocolate fudge cake topped with walnuts. Featured on the Food Network as one of America's "Top 5 Most Decadent Desserts" 
Oh. My. Excuse me while I go chug an entire squeeze bottle of Hershey's syrup.

I'm back. *delicately dabbing chocolate residue from face* All better.

So I've put on a few (ahem..) pounds since I began this daily prednisone regime. Prednisone pounds seem to fit differently on my body than just your run of the mill overindulgence pounds. Prednisone pounds like to hang around my torso and neck and face. Prednisone pounds just feel weird.

I've been looking around on the net to see if there's any good advice to be had in dealing with this.....addiction, or whatever the heck it is.....and haven't found any strategies that seemed useful or practical. This little tidbit was obviously written by an individual that has never experienced prednisone chocolate craziness:
There is no "magic" diet to prevent you from gaining weight with prednisone, or to make you lose the weight already gained. Like all weight-reduction diets, it is all about calories. You lose weight when you burn off more calories than you eat. To successfully lose weight while on prednisone, you need to reduce your caloric intake despite the appetite stimulation and try to increase your exercise to burn the calories. If you are just starting the prednisone, you want to make sure you do not increase your intake of food (and calories) right away, so you do not gain unwanted weight.
Oooooooookaaaaaaaaaay. I'll just eat less just because I know I should. I'll just handcuff myself to the couch leg when the cravings hit. Right. Great advice.

On second thought, that wouldn't work. I just know that I'd carve up my hardwood floors pretty badly when I drag the couch over to the kitchen. Sigh.

Here's another article written by someone equally clueless:
Modify your carb intake. Carbohydrates affect your weight on prednisone by increasing water retention and food cravings. Stick with a low-carb diet to maintain your weight and eat no more than 20 to 30 grams of carbs a day.
People - I know that I shouldn't be eating more calories and carbohydrates. I know it. I know this. I am completely conscious of this fact as I wolf down a dozen Krispy Kreme donuts.

The problem is in feeling completely helpless when these cravings hit. I feel as though I'm as powerless as someone standing in front of a tsunami wave.

What I need to know is how can I dampen these cravings? How can I make them more manageable? How can I avoid becoming so large that I have to buy three seats for myself on an airplane?

Here's a few strategies that I am trying, with very limited success:

  • Snack on fruit - I know, the goal is to reduce carbs but I figure that a piece of fresh organic fruit has many more redeeming qualities than a quart of Haagen Daz does. 
  • I am buying dark chocolate with a high cocoa content. Milk chocolate triggers a feeding frenzy in me that would rival any shark pack. But for some reason, a piece of very dark chocolate satisfies in much smaller amounts. 
  • I am trying to resist stocking my pantry or refrigerator with trigger foods. However....I live very close to multiple places that have enormous quantities of high quality prednisone craziness foods. 
  • Exercise. Sigh. This one is hard as anyone with AI fatigue knows. But I keep trying to increase my physical activity in small increments. Hopefully one of the benefits of long term prednisone will be a higher tolerance to exercise. 

Any other ideas out there?


Monday, January 25, 2010

Autoimmune Sisterhood

I have a friend who was diagnosed with rheumatoid arthritis about a year ago, and although I am sorry that she has had to experience the difficulties that accompany this diagnosis, she and I have much in common. Shared experiences forge a unique bond.

We can discuss......stuff. Stuff that's hard for other non-autoimmune people to understand.

A small example: After a difficult week at work, my friend came home exhausted. She said, "I was sitting in a chair when I realized that even sitting up required too much energy. I had to lie down. I would never have imagined that something as easy as sitting up in a chair was too energy-consuming."

Oh, girl. Been there, done that. While others around us sincerely feel sympathetic, and I don't want to minimize how appreciative I am of the love and support of others, it takes another AI person to truly understand.  I call an experience like the one my friend had a crash. She calls it an energy black hole. But no matter what the words we choose to describe it, we know.

She knows.

Image by Mattox

Saturday, January 23, 2010

Oregon Coast

Pictures by me and my trusty Canon Rebel.

My Sunday prayer:

Thanks, God, for letting me live here. Never let me take this beautiful place or these wonderful people for granted. Thanks for the gift of this rare sunny winter day.

Friday, January 22, 2010

Workaholic Blogging

I love the blogosphere.

For nosy folks people with varied interests such as myself, there's a whole virtual world out there that allows a peek into an amazing array of lives.

My favorite blog heroine is Ree Drummond, who writes The Pioneer Woman. I've been reading her stuff for years, and it's exciting to see how her blog has gone viral. And why not? What's not to love about a New York City ballerina who marries a rancher and, as she says, trades her high heels for cowboy boots? She also has written a cookbook, home schools their four kids, hops in the ranch truck each morning with the Marlboro Man, as she calls her hubby, to take care of things in general on the ranch, has a wicked sense of humor, and documents everything beautifully in amazingly gorgeous photographs.

Then there's Not So Humble Pie. Mrs. Humble describes herself as "just your typical nerdy biological anthropologist turned stay at home mom and baker of sometimes strange goodies." My favorite post so far is the one in which she makes Drosophela - or fruit fly cookies.

Although the Wii controller cookies run a pretty close second:

Doc Gurley writes an amazing blog. She's a board-certified internist physician and is proud of the fact that she is the only Harvard Medical School graduate to be awarded the Shoney ten step pin for documented excellence in waitressing. She writes with a razor sharp sense of humor but also with the perspective of someone who is truly on the front lines of the healthcare delivery system. Among others Doc Gurley's clients include some of the homeless population in San Francisco, and her views on the United State's healthcare provide a very knowledgeable take on the merits and deficits of our current programs. She also writes on those day to day health issues that we all have, such as the lost tampon. In her spare time, she also raises her kids, works full time, AND writes for the San Francisco Chronicle. Go read this blog, and get ready to be educated while laughing so hard you'll fall off your chair.

Oh, and you can't miss a trip to Bakerella's blog. A word of caution, though: Don't visit this site on an empty stomach. You'll find yourself in the car on the way to your nearest source of frosting in seconds. Drool......
Two words: Cake. Balls.

Ooo, ooo - you've got to check out Cake Wrecks - When Professional Cakes Go Horribly, Hilariously Wrong. Here's a sample:

Yes. That is indeed what you think it is.

Sigh. What a bunch of over-achiever blog writers. God love 'em - but they all are ripping along through life as doctors, biochemists, bakers, and heaven knows what else. How do they find time to rip out these excellent posts on top of their other achievements? I surely am mystified how they find the time or energy, but I am so glad that they do.

Thursday, January 21, 2010

Food Fight

Let me begin by saying that I am the world's worst dieter.

Yes, I am. I am a diet slut - I'll try any diet that I see promoted on talk shows, in a bookstore, or especially any diet that my friend Bev is on. You would think that after all the time I have spent dieting I would be wispy thin by now, but of course I'm not. It's because I'm the world's worst dieter. Oh, I diet, and ferociously - but only for very short periods of time. I'm back to my old comfy but unhealthy eating habits quick as you can say, "Gimme a large Blizzard with extra Heath and Butterfinger."

I have stacks of diet books, all of which I have read cover-to-cover. For a period of about one week after reading one of these books, I'm enthusiastically living whatever food lifestyle is promoted in said book. I'm so enthusiastic that I shop endlessly for whatever  foods are in the all-important allowed list. All good diet books have an allowed list. As well as the dreaded forbidden list. Foods on the forbidden list are methodically cleaned out from my pantry and given away to food banks or my children. Usually I begin replenishing my stores of forbidden foods at week three.

I also enthusiastically blab to anyone within earshot about the diet flavor of the month, why it's fabulous, and how much I intend to lose on this diet. I offer to loan the book to anyone who listens to me for ten seconds.

Funny how I've never been able to give one of those books away....

I inflict the allowed foods on anyone eating anything in my house. Like the time I served an entirely low-carb meal including faux mashed potatoes (cauliflower mushed up with butter and cream) and a low-carb artificially sweetened cheesecake - ewwwww - to a rather large dinner party. Including Father L., our priest.

I fed diet food to our PRIEST. I have no shame. None.

I'm amazed that these people return to my house and let me cook meals for them. Silly folks.

Given my previous diet habits, it's amazing that one diet book published in 2008 escaped my attention until recently. The book is called In Defense of Food and is written by Michael Pollan. Pollan's recipe for eating healthily is simply stated by three short phrases:

Eat food. Not too much. Mostly plants.

He goes on to elaborate further on each of those phrases, but really, that's the gist of the whole book.

So what does he mean by food? Well, there's the big question. I really enjoy his definition of what food is (who knew we needed a definition?). According to Pollan, food is edible stuff that our great-grandmothers would recognize. And it never comes to us through our driver-side car window, or packaged in plastic and cardboard and plucked from a supermarket freezer section.

In Defense of Food is an enjoyable read that encourages us to eat foods in their least-processed state, grown in healthy soils, and prepared in our own kitchens.

What? Cook? At home? With.....fruits and vegetables and raw stuff??

I like his perspective on the whole eating healthy thing, I really do. But there's something about this book that is unsettling. He doesn't include a forbidden and allowed list. The book simply describes the benefits of eating real food, and turns readers loose.

I.....I....prefer something more regimented. So that I can feel as though I am on a diet. And then when I'm ready, I can bail. I can rebel. I can say, "take this diet and shove it!" I don't want to think for myself. I need lists. I don't waaaaaannnnnaaaaaa be a responsible eater.

A Butterfinger Blizzard tastes so much better if it's on the forbidden list.

Wednesday, January 20, 2010

Zebrafish and Sleep

I don't know about you, but I have noticed a definite change in my sleep/wake cycles since the appearance of autoimmune disease: Often it's more difficult for me to fall asleep, and upon awakening feel as though I have not had a restful night's worth of sleep even though I may have slept for eight or more hours.

I'm not alone - sleep disturbances of various types are documented repeatedly in autoimmune disease as well as the often-accompanying conditions such as fibromyalgia and chronic fatigue syndrome. But is it the disease - or the medications used to treat these disorders causing the sleep disturbances?

So it was with interest that I read this study which examined sleep and wakefulness pathways. Scientists at Harvard University discovered a surprising similarity between zebrafish and mammals:
 ...that despite the evolutionary gap between them, zebrafish and mammals may be strikingly similar in the neurochemistry underlying their rest/wake cycles, meaning these same compounds may prove effective in people. 
The scientists then examined zebrafish's response to various chemicals and the resulting change in sleep/wake cycles:
...the researchers identified 463 drug candidates that significantly altered rest and wakefulness, many of which had not previously been known to have such effects. 
 Behavioral profiling reveals nuanced relationships between drugs and their targets," Schier says. "It can characterize large classes of compounds and reveal differences in effectiveness, potential side effects, and combinatorial properties that might not otherwise be detected." 
Results were published this week in the journal Science.

Tuesday, January 19, 2010

The Eye of The Hurricane

After I wrote my post about the Greg and Terese soap/dog treat incident, which by the way guys - I solemnly promise that I won't bring it up ever again - and titled the post "I Have Great Friends", I realized how true that title is.

I was thinking about how I am surrounded by such great people the other night while tucked into bed, John snoring away on my right side and the schnauzers on my left. I'm not going to get into the dogs think they're people discussion here, though I know where Maggie and Lulu would categorize themselves.

When I conjure up a mental image of my relationship to my friends and loved ones, I see myself standing quietly in the eye of a hurricane as everyone around me goes flying by. I get to see bits and pieces of their busy and fascinating lives as they whirl around, and I love when they stop for a brief time and join me in my little bubble of calm to share their experiences.

I remember when I used to be out there in those wildly circulating currents.

I hope you guys realize how lucky you are.

Image by Cheeseface101

Saturday, January 16, 2010

I Have Great Friends

Hehe. Snort. Guffaw. Oh, man.

Tonight, I asked Terese and Greg if they wanted to come over and sniff my soap. Terese thought I really could have phrased my request better, and I suppose she's right. I had made a new batch of soap and I wanted them to approve the new soap's fragrance. After bribing them with the offer of some adult beverages, they agreed to come over.

They showed up at the house, and Lulu started barking like an idiot dog. So I handed Greg and Terese each heart-shaped doggie treats to give to Lulu in the hopes of quieting her down. I have to admit that I didn't communicate this well.

Instead of giving the dog the treats, they both assumed that what I was handing them was samples of my new soap. So they both stuffed the stinky doggie treats up their nostrils. Or close, anyway.

Hoo haa! *gasping for breath after laughing uproariously*

Ahhh. Life is really good sometimes.

A Life Lesson In Mom's Caramel Rolls

Yup. The caramel roll magic happens here. 
Since it's Saturday, I figure that we have all lived in anatomy and physiology land long enough this week. It's time to post something totally non-autoimmune related.
     I was talking with my mom yesterday, and as I hung up the phone, I was shaking my head in amazement. As usual. I really want to grow up to be just like her someday..... so today I'll try to explain why.
     Indulge me in a bit of reminiscing here. I know that everyone has great family stories to share and I'd love to hear them. I'll post them, too. Oh, hey! That would be fun. Send them to me!
     But back to Mom.....
     Mom is a petite 76 year old lady. It's hard to get a good look at her because she's one little blur of activity - always on the go, and always has a project. In spite of surviving breast cancer and a double mastectomy, a four-graft heart bypass surgery, and Parkinson's disease, this woman hits the ground running every morning. Literally.
     Mom and Dad have a large dairy and beef farm. Dad, who is 85 and still manages the farm, is the perfect match for Mom, but that's a story for another day.
     Mom isn't allowed to do what Dad describes as "man's work". She doesn't milk cows, or shovel manure, or work the fields. This rule was conceptualized in the first week of their marriage, 50 plus years ago. Dad was out in the hayfield baling hay, they were invited to go to their first party as a married couple, and Dad was running late. So eighteen year-old newlywed Mom in an effort to help Dad and to ensure that they arrived at the party on time, went out to the pasture, brought in the dairy cattle, put them into the barn, fed them, and milked them. She had also butchered, cleaned, and roasted one of the farm's chickens for a quick little supper which was waiting in the oven. Mom was just washing up the milking equipment when my Dad showed up in the milk house looking stunned.
     These two overachievers had to come to a compromise: Dad's domain was the farm, animals, and crops. He wasn't about to let his pretty new wife spend her time in the barn, even though she was fully capable of handling any of the chores. Except for raising six kids, which was without doubt a joint venture, Mom's domain would have to encompass everything else, and all these years later it seems to be working out pretty well.
     Mom keeps all the financial records and budgets for the farm business, which is a huge undertaking given the fact that Dad has three checkbooks and leaves them in various places and doesn't believe in debit cards or online banking accounts. She also likes to keep the buildings on the farm tidy: two large barns, two granaries, two calf barns, three large machine sheds, two houses and several other small outbuildings; so does a great amount of painting. With a big brush. On a ladder. And she's 76. She prefers white paint rather than the stereotypical barn red. With green trim.
     Dad bought her a heavy duty riding lawn mower and Mom's a demon when she gets behind the wheel. Anything even remotely grassy is fair game to be mowed by Mom, and any little patch of soil has the potential to be a flower bed. She loves petunias. She also loves her garden rototiller which she calls Tilly. Tilly has her work cut out for her since Mom has a garden the length of her house and cans at least 50 quarts of tomatoes, 50 pints of home made spaghetti sauce, and 100 quarts of the best dill pickles in Dunn County every year. She thinks that store-bought onions are pathetic, so grows her own alongside green beans, potatoes, tomatoes, cucumbers, dill, squash, and broccoli.
     I solemnly swear - I am not exaggerating or fabricating these stories.  I can provide documentation and references, if necessary.
     But wait - It gets even better.
     Mom considers her domain to include her neighborhood and her church parish. Her own mother died relatively young in life, so Mom has befriended several widowed elderly women over the years. Each became a grandmother to us, and Mom cared for each until they died as though they were her own mother, even to the extent that she would stay at their bedside and provide excellent care so that they could die in their own home. Mom would have made a superb nurse. Actually, in retrospect, she is a superb nurse.
     In her spare time, har har *slapping knees here, I crack myself up*, Mom belongs to a bowling league in the wintertime and a golf league in the summer. She follows major league baseball on TV with great interest, since in her younger days, was a pitcher for a local women's softball team - think A League of Their Own era - and is proud of the fact that she once pitched a no-hitter. And although she will watch the Green Bay Packer football games occasionally, Mother thinks that Brett Favre really wasn't nice when he went to go play for those nasty Minnesota Vikings. Sniff. Such poor manners. Honestly.
     My favorite Mom and her church domain story involves a covert activity that happens every Saturday. Mom and Dad have befriended one of their elderly priests. Father H. is nearing 90, and although he has a housekeeper, he refuses to let this nice lady clean out his refrigerator. He has lived an extremely frugal life, and is reluctant to let anything even remotely edible leave his house. So while Father says the Saturday evening Mass each week, Mom sneaks into the parsonage and cleans out the refrigerator. She's convinced that if she didn't he would die from food poisoning eventually. And each week, she leaves a freshly-baked pie as her calling card.
     *eyes glazing over....* Mom's pies..........I need a minute to compose myself here. Breathe deeply, Julia. Mop up the drool. Step away from the recipe box, girl.
     Sigh. OK. I'm back.
     So my discussion with Mom yesterday, which inspired this post, revolved around her awesome mouthwatering melt in your mouth caramel rolls. One of my kids wanted Grandma's recipe, so I grabbed a pad of paper and a pen and called Mom.
     There's a couple of things about this recipe which capture the essence of my mother. First, Mom has a name for each of the recipes which crowd all five of her recipe boxes. This one is entitled Gladys L.'s Caramel Rolls. Now, I'm sure at some point in time, Gladys did indeed share a caramel roll recipe with Mom, after which Mom immediately changed just about everything. But since Gladys gave her the original, this remains Gladys' recipe. We should always give credit where credit is due, after all.
     Secondly, this recipe makes four, yes FOUR, 9"X13" pans of caramel rolls. Four dozen rolls. I asked her if the recipe could be halved, or quartered. Mom thought for a little while.
     "Well, I honestly don't know. I suppose you could......but I've never made less than a whole batch."
     She's never made a batch of caramel rolls that resulted in less than four dozen rolls. Yup, that says it all. That's my mom.
     Here's her logic: My mother never arrives anywhere without bringing a gift of great food, so she has lots baked and ready to go. The caramel rolls are only one of a zillion other delectable treats that are Mom's specialty. Also, Mom and Dad have a never-ending parade of visitors coming into their home, since everyone in the tri-state area knows that a plate of scrumptious pastries and a freshly brewed pot of coffee will materialize as soon as anyone drops by.
     So Mom divides up the rolls, packages them and throws them into her cavernous chest freezer. She can have a package in the microwave all warm and caramel-ly and on a plate before Aunt Betty and Uncle Eugene roll up the driveway and put their Buick in Park.
     At the peril of making this probably my longest post ever, I'm including Mom's, er, Gladys L.'s recipe:
Gladys’s Caramel Rolls
Makes four 9” x 13” pans, (four dozen) caramel rolls
3 pkgs dry yeast. Don't use rapid rise yeast.
2 TBS sugar
1 C warm water.
Combine in a very heavy duty mixer bowl. (If you don’t have a heavy duty mixer, get ready to work out those mixing muscles.) Let mixture stand until frothy bubbles appear.
     To yeast mixture add:
2 C warm whole milk
1 C warm water
6 C flour
Beat with mixer or wooden spoon until smooth.
     Then add:
2/3 C warm vegetable oil
2 beaten large eggs
6 TBS sugar
4 tsp salt
Beat until well blended.
     Then add:
3 C flour
Beat with mixer. Turn dough out onto a floured surface and knead in by hand:
2 C flour
Knead until dough is elastic, about five minutes.
     Place dough into an oiled bowl, cover, put in a warm - not hot - place. Mom runs a small amount of warm water into her sink and puts the covered bowl into that, making sure that no water gets into dough. Let dough rise until doubled. Punch down.
     Just before dough is finished rising, begin making caramel:
FOR EACH PAN OF ROLLS: (so if making a whole dough recipe you will need to multiply this by four - if you put it all in one pan this translates to about 2 cups of caramel per pan)
     I don’t know why Mom and Gladys wrote the caramel recipe this way. But multiply everything by four. Just do it. I never argue with my mother.
     In a large heavy saucepan, combine:
1 C brown sugar
1/4 C heavy cream
4 TBS butter
1 1/2 TBS white syrup (I know. I’m not sure one half tablespoon is a real measurement, but Mom eyeballs this one.)
1/4 tsp cream of tartar.
Stirring constantly over medium heat, bring just to a boil, and remove from heat. Cool slightly.
     After dough is risen and punched down, turn out onto surface and divide into four pieces. Roll each piece into approximately 9” x 13” rectangle and spread butter over surface. Sprinkle generously with white sugar and cinnamon. Roll each rectangle like a jelly roll, pinch to seal, and cut into twelve equal sized pieces.
     In each of the four 9" x 13" pans, pour 2C of warm – not hot - caramel sauce. Place twelve rolls evenly in each pan: four rows of three rolls each. Let rise until doubled. Will rise quickly due to warm caramel.
     Bake at 375 degrees for 20 - 25 minutes until rolls are golden brown. Flip pan over onto a foil covered tray immediately after removing from oven and scrape remaining caramel from pan onto rolls.

Devour. Don't burn yourself. And save some for the neighbors.

Friday, January 15, 2010

Glandular and Extraglandular Manifestations of Sjogren's Syndrome

As I continue to indulge my obsessive read everything about Sjogren's that I can put my eyeballs on habit, occasionally certain phrases make me stop briefly and think, "Huh?" Today's post title was one of those phrases. But with Google under my fingertips and Tabers on my bookshelf, all was quickly defined and clarified.

Here's what I learned. 

Sjogren's syndrome can create two types of symptoms, or manifestations: glandular and extraglandular. Many Sjoggies only develop glandular symptoms, but others like me are lucky enough to be blessed with both types of symptoms. 

Glandular symptoms arise due to lymphocytic damage in lacrimal, or tear-producing, glands; and salivary, or saliva - producing glands. In other words, lymphocytes, specific white blood cells, mistakenly identify normal tear and saliva producing tissue as not belonging to the body, and destroy those tissues. The result? 
  • Dry eyes
  • Dry mouth
  • Altered sense of taste and smell
  • Dry upper respiratory tract
  • Voice becomes hoarse after speaking 
  • Development of oral yeast infections, or candidiasis
  • Parototitis, or inflammation of the parotid salivary glands, and production of stones in the salivary glands
Extraglandular symptoms occur elsewhere in the body, and the list is extensive:
  • Skin 
  • Lungs
  • Gastro-intestinal tract
  • Pancreas
  • Liver
  • Heart
  • Neurological system
  • Kidneys
  • Joints
  • Reproductive system
  • Fatigue
  • Increased incidence of lymphoma
Each of these symptoms deserves an in-depth discussion. You can read more about glandular and extraglandular symptoms of Sjogren's syndrome here  and here

Excellent image above found on the Sjogren's Syndrome Foundation website.  

Thursday, January 14, 2010

Since You Asked

Want to know how Maggie, the doofus rock - eating dog is faring?

Really really well. For what this surgery cost, she should be doing really really well. She should be able to sing and tap dance and do magic tricks, for goodness sake.

Poor baby. I was amazed at the length of her incision.

So the source of this little adventure is to be found in our back yard. We made paths around our fruit trees and to our greenhouse out of pea gravel. Truckloads of the stuff. It's cheap, keeps the shoes from getting muddy during our winter rains, and doesn't really look too bad. Brilliant! we thought.

Um, maybe not.  We didn't realize that Maggie thought that pea gravel was brilliantly delicious. So delicious that she had twenty of the larger rocks filling her stomach and at least another thirty making their way through her innerds. Ouch.

Our veterinarian has suggested that we do two things: 1) purchase box muzzles for Maggie and Lulu so that they are unable to have rocks as tasty snacks, and 2) consider removing all the rocks. ALL OF THE ROCKS.

I've been using the muzzles, but as for the herculean task of shoveling up all that pea gravel and then replacing it with something that the dogs won't find delicious.......whoa nellie. Obviously I'm not up to a project of that magnitude, so John and kids and any friends that we can sucker persuade into helping us will have to do it. My friend Susan suggested that we throw an Easter egg hunt this spring  - and have everyone shovel a wheelbarrow full of pea gravel instead of look for boring old eggs. I'm skeptical.

It's a good thing you're so stinkin' cute, missy.

Wednesday, January 13, 2010

More Soap

This make-your-own soap thing could be addictive. Here's my latest batch, made from organic olive, palm, and coconut oils and scented with organic pomegranate and vanilla essential oil.  I call it my olivethespringtime soap.

I think that it smells pretty good, but then I probably should not be choosing fragrances, since my smeller is seriously out of whack. I'm going to rope Terese into giving it the sniff test.

Yes, it's a funky green color, because I used extra virgin olive oil instead of the lighter colored olive oil of which I couldn't find an organic variety. But I think the color adds to the whole springtime thing going on, don't you? Maybe it will fade a bit as it continues to cure.

Tuesday, January 12, 2010

Read This

Ooo - Great post, Val!

Head over to Professional Patient and read her January post entitled "Dry Mouth Resolutions for 2010". It is a great reminder to all of us cotton-mouthed Sjoggies to be very diligent and gentle with our dental hygiene.

Image found here.

I'm Sure They Mean Well

Over at RA Warrior, Kelly Young has written an excellent post entitled So Glad Your Rheumatoid Arthritis Is Cured.

Shampooed and styled hair doesn't translate to a cured chronic illness. Well said.

Image found here.

So Cute I Can't Stand It

This totally random Awww............ moment brought to you buy Cute Overload.


Carry on, people.

Monday, January 11, 2010

Sjogren's Diagnosis - Your Results May Vary

I was recently asked by a reader to share my experiences with early Sjogren's syndrome symptoms and my route to diagnosis. She was frustrated: "Why should it take so long to figure out what's going on? Why don't doctors know more about Sjogren's? How were you diagnosed?"

She's not alone in her struggles to get a good answer for her health problems. According to the Sjogren's Syndrome Foundation, the average length of time for diagnosis for most Sjoggies is seven years.

Every Sjoggie has a different story to share, but here's how it all happened for me.

In the fall of 2002, life slowly seemed to change for me, and I just couldn't put my finger exactly on what was going wrong. I had a job that I loved, my family was happy and well, and I felt as though I should have been living large and feeling fine, but overall, I felt lousy. Constantly.

Initially, I chalked my problems up to my age and my pudgy waistline. I began to be more careful with my diet and made an attempt to get more exercise, but in spite of my efforts, I felt as though I was becoming more unwell as the months went on.

On an annual exam with my family doctor, I had brought along a lengthy laundry list of complaints, and bless her heart, Dr. H. pulled up a chair and reviewed each and every item on my list. My ears were constantly ringing, my eyes and mouth were dry, and my sense of smell had seemed to vanish. I was popping Tylenol and ibuprofen almost daily for aches and pains and the sensation that I was just on the edge of running a temperature. I had no energy to do anything but to go to work, then come home and collapse on the couch.

And I was cranky as all get out.

So she ordered lab work to screen for various problems and made a referral for me to see an ear-nose-and-throat doctor and an eye doctor.

The ENT physician could find no structural problems that would cause a decreased sense of smell or tinnitus (ringing in the ears). My eye doctor noted that yes, indeed, my eyes were dry. She prescribed some eye drops. My labs showed that my thyroid not producing enough thyroid hormones, and I had an elevated sedimentation rate, which indicated some kind of inflammatory process.

So I popped my Synthroid - replacement thyroid hormone - and tried every brand of eye drops that I could get my hands on for about six months. But in spite of continued discussions with Dr. H., I continued to feel as though I was slogging along through a giant bowl of jello, both physically and mentally. Routine tasks suddenly became difficult. I found myself checking and re-checking my work and second-guessing my decisions. My thought processes seemed to be slowed almost to a halt. I began to carry wads of kleenex in my pockets to mop my face since any small exertion left me sweating profusely and make up and mascara melted away. I knew these spells were not related to menopause since I had my ovaries and uterus removed several years previously and was already taking estrogen.

I began a very expensive relationship with my dentist after multiple cavities began appearing in my teeth at my gum line. My dentist thought that my dry mouth may be causing the cavities, prescribed fluoride mouthwash and gave me the classic oral hygiene lecture. I also began to appreciate nitrous oxide during these uncomfortable appointments. (You can read more about my lucky shoes and nitrous oxide escapades here. )

I was tired and miserable, and getting no answers.

Then one day, my director of nursing took me aside. "So what's going on with your face, Julia?" she asked.

Excuse me??

"Have you noticed that look as though you have the mumps? Here, look." She guided me to a nearby mirror.

Whoa! No, I hadn't noticed that my face was swollen, especially right in front of my ears. But by then I was too tired to notice if my shoes were on the wrong feet. Or if my hair was purple. I didn't really care.

"I want you to go home and get this checked out. Let me know what you find out - and feel better!"

I dragged myself home and called Dr. H yet again. Later, I sat across from her in the exam room and cried. "I feel so awful. I know that this isn't the mumps since I had a whopper case as a kid. What is going on?"

Dr. H. looked thoughtful. "I am going to have you seen by a rheumatologist. OK?"


"Because you might have an autoimmune disease called Sjogren's syndrome. Your enlarged parotid glands made me think of it. I'm not sure about this, but a rheumatologist will know what specific labs to draw and how to get a diagnosis."

What the heck is show - show - whatever you said syndrome? Never heard of it.

"Most people haven't. And I might be wrong, but let's check it out."

At my rheumatology appointment, Dr. S. explained that I did indeed have the classic symptoms of Sjs: dry eyes, dry mouth, enlarged parotids, fatigue, achey joints, and brain fog. Further labs showed that I had elevated c-reative proteins, positive ANA, and positive SSA/ro autoantibodies, all of which indicated that I had joined the Sjoggie club. She prescribed plaquenil and prednisone and so it all began......

It took about one year for me to get a diagnosis, and an additional three months before my medications began to take noticeable effect. And as every Sjoggie knows, a diagnosis does not translate to living happily ever after. The last seven years have been a rollercoaster ride of highs and lows.

So - what is so therapeutic about having a physician say these magic words, "Your diagnosis is...."?

It's relief that what is unknown is suddenly known. That you are not crazy, lazy, or a hypochondriac. A diagnosis doesn't make the symptoms of Sjogren's syndrome less difficult, but it does give them a legitimacy of sorts. The first time that I saw the words, "autoimmune fatigue due to Sjogren's syndrome" written in my chart I felt a very strange sort of satisfaction. Heck, yes. I am tired and sick and there IS a reason for it all.

So that's my story. What's yours?

Image found here.

Saturday, January 9, 2010

Dogs Aren't Simple

What could I have possibly been thinking?

Peaceful? Calm? Quiet? In MY house?

Literally minutes after writing my last post in which I smugly commented about my serene household, my dog Maggie was on her way to the veterinarian, followed by a trip to a doggie surgeon. You can read more about Maggie's adventures into doggie surgical care here. Poor little schnauzer.

Oh, brother.

Image found here.

Friday, January 8, 2010

Ordinary Times


The accoutrements and decorations and tinsel and candles and packages attached to the holiday season are all taken down and put away. My house appears sparsely furnished and clutter-free.

Not bad. Not bad at all.

My faith tradition has a great term to describe this time of year: Ordinary Time.  It's the time between Christmas, specifically Epiphany, and lent, and is a time for simplicity and calm.

It's a time to just get on with things, to move back into those normal daily rhythms, and to actually experience that peace that is wished for on almost every holiday card printed by Hallmark.

I can snuggle in next to the fireplace simply enjoying the fire without making lists and checking them twice. It's too early to begin digging in the garden and too late to plant tulip bulbs.

I love this ordinary, peaceful time.

Thursday, January 7, 2010

Doggone Good Party

Poor Sammy dog fell asleep during our New Year's Eve party and woke up looking like this. He tells me that he was just holding the bottle for a friend. Sure, Sam, sure......that's what they all say.....

Wednesday, January 6, 2010

Define Autoimmune Fatigue, Please

Someone asked me recently what autoimmune fatigue feels like. It was a hard thing to explain.

I kind of babbled something about feeling tired all the time and the fact that when I exercise often the worst part of the fatigue happens hours and sometimes days after the exertion is over, but.....I just didn't have the right words to accurately portray this life-changing experience. I blame my lack of eloquence on brain fog. Or a severe case of Christmas cookie overload. Whatever.

In retrospect, it seems that it would be a good thing for me to be able to effectively describe my experience with autoimmune fatigue, for a variety of reasons. One being the obvious - so that when I am asked, I would have the words at the ready. I've never considered myself blessed with a silver tongue, but mercy! Julia's tongue is actually more like lead these days, especially after any kind of energy expenditure. So having prepared a reasonable and accurate explanation for autoimmune fatigue would definitely reduce the doofus factor for me, personally; but would also allow me to take advantage of those rare opportunities to be an advocate for autoimmune disease awareness.

Yes, it would be a good thing to come up with a succinct, descriptive and accurate definition of my personal experience of whatever this thing is that leaves me drooling on my pillow for extended lengths of time, but this is a difficult thing to do. I've tried writing posts about autoimmune fatigue before hereherehere, and here, but still haven't captured it's essence.

Which leaves me looking at a blank computer screen still without those magic words that would explain it all.

Maybe the inability to define AI fatigue is actually the best way to describe it: so unpredictable in it's severity, duration and occurrences, and accompanied by emotional lability and memory lapses which only add to it's ability to evade complete description.

Tuesday, January 5, 2010

Autoimmune Feet

Geez, I really hate my feet.

Wow, that came out wrong. What I meant to say is that I really hate the way my feet feel these days.

They've never been my favorite appendages, especially when I hit adolescence and my feet grew two shoe sizes in one year and the tops of my big toes sprouted hair. Eww.... I was certain that I had the grossest feet in all of my high school, the state, and certainly in the entire world. But at some point, my feet and I developed a grudging acceptance of each other, especially after I acquired a deft hand when shaving my legs (and toe hairs) and noticed that there were at least two other girls on the dance squad that had bigger shoe sizes than me.

My feet and I have tolerated each other since then as long as there's a reasonable amount of toenail polish left on my toenails from the occasional pedicure. But lately, my feet have been harder to get along with. As a matter of fact, they've been downright cranky. And I know why.

Yes, I can blame my tootsie troubles on Sjogren's syndrome. Well, actually everything except their double digit size. What troubles?

They hurt. In various ways.

Sjogren's has depleted my skin of moisture, and this is especially noticeable in my feet. I can blob on moisturizer for my hands and arms several times a day because they're, well, handy. But since it takes more effort to actually take off my shoes and socks, my feet suffer because of my lazybutt tendencies. The skin especially on my heels becomes so dry and callused that it occasionally cracks open to the raw tissue below. If I am especially careful to keep applying non-drying moisturizers such as body butters, I can avoid these heel cracks for the most part, but not always.

Autoimmune-related peripheral neuropathy makes my feet tingle and burn and ache almost constantly.

When I am in a flare, the joints of my feet are painful and the weight of bedclothing on them at night is enough to cause pain, and that's before I put the heft of my body weight on them. I"m glad that I am not flaring right now. Post-holiday Julia here has several more pounds to inflict on my weight bearing feet. Ah, but that's another topic....

So what do I do to minimize these aches and pains?

When my joints are painful during a flare, it helps to know that once the flare recedes, the joint pain goes away as well. Rest, rest, and more rest along with medications as directed by my doctor ease the symptoms considerably.

I am trying to be more diligent in applying soothing moisturizers to my feet, keeping in mind that skin care lotions can often cause more drying due to their alcohol content, and thus causing more harm than good. I try to use products that are described as "cremes" or "butters" since those products contain fewer alcohols. I also try to avoid products that are heavily scented or contain peppermint, since for me, they seem to only aggravate the symptoms of peripheral neuropathy.

My fancy free barefoot days are gone since autoimmune disease appeared. Barefoot romps outdoors seem to dry and irritate my feet, and when I am bumbling around on one of my brain fog days,  I inevitably stub my toes or step on something sharp.

Aside from protecting my feet from my clumsiness, a good-fitting pair of shoes and a set of natural fiber socks provides cushion and support for my feet. Gone are the days of squeeeeeezzzzzziiiiinnnng my feet into shoes that look irresistible in the box but are a smidge too small. I have had to swallow my pride and present my hefty tootsies to the kind folks at a reputable shoe store, who didn't bat an eye as they measured my feet.

And by the way, it's embarrassing enough to stand in a small store with a couple dozen teensy-footed women within earshot and order shoes in a size 10 or 11, but some of the better shoes are sized by european measurements which translates to a 42. Forty two.

"What size did you say, ma'am?" um...forty two. "What did you say? I can't hear you." Forty two.  "DID YOU SAY FORTY TWO?" Why, yes I did. Let's just go ahead an shout it so everyone can hear, shall we? Better yet, how about making a large poster and feature my face and my shoe size in your largest window? How about that? Wait, wait - there's a billboard available on the freeway, why don't we just post it there??

Me? Exaggerate? Never.

You can read more about foot care here from the National Institutes of Health, and here from the American Podiatric Medical Association.  Image by jazza