Such A Good Patient

Being the model patient that I am, (all right - quit snickering, you guys) last night I settled in to read the six sheets of patient information that were tucked into the bag with my new prescriptions, methotrexate and cyclosporine.

I began with the methotrexate stack. For the most part, I anticipated the usual warnings, list of side effects, contraindications, dosage, etc.

*yawn*

Yeah, yeah, yeah.....Take only as directed, drink plenty of fluids, do not take if pregnant, may cause loss of appetite, nausea, tiredness, and vomiting. Let's see....what else....

What?!?

Alcohol increases the risk of liver damage for people taking methotrexate.

The increased risk of liver damage is significant for people who are drinking alcohol while taking methotrexate. Ideally, you should not drink alcohol if you take methotrexate. At most, with your doctor's permission, you should have no more than two drinks per month.

Well. I was prepared for all that gastro-intestinal stuff, and I'm tired all the time already. But...but...no more mango margaritas?

Sigh.

I suppose I like my liver better than any frozen drink. Aw, gee... The thought occurred to me that actually, the things I like best about mango margaritas aren't the alcohol. I like the tangy, cold, smooth, and sweet things about it.

How about.......an alcohol-free mango margarita? It's such a crazy idea that it just might work.

Why, yes, yes it does. Mmmmm.........

Live Long And Prosper

Was it Mork that could do the funky V thing with his fingers? Or Spock? Can't remember. But - I can. Here's proof:

Ewwwie cuticles. But it hurts too much to touch them right now.

So the reason that I'm showing off my extraordinary hand dexterity skills is actually to give y'all an update on my dumb stupid psoriatic arthritis.

My left hand hurts like heck. I'm typing with fewer fingers these days. And as my fingers began to swell and become more cranky, it seemed as though my whole body began to ache more, too.

I had an appointment with my rheumy today to discuss my treatment options because I'm not happy with the Azulfidine that I'm currently taking. I know that it may take months for this medication to become truly effective and I have tried to be patient. But gee, for some reason pain + time just doesn't = patience for me.

I really didn't have to explain a thing when my rheumy stepped into the exam room and took a look at my hands. Well, the Azulfidine isn't doing a thing for you! He exclaimed. And look at that pinky DIP - looks incredibly painful!

He zipped out of the room and returned with a syringe and other joint-injection supplies. How about it? He asked. I'd want that finger injected if I were you.

I nodded in agreement and he quickly went to work.

Bless his heart. 

Ice and rest for 24 hours, he instructed. It'll feel much better tomorrow.

We then went on to discuss a medication change. As usual, I had done some research into best practice guidelines for treating psoriatic arthritis, and was fully expecting to be discussing biologic response modifying drugs such as Rituxan and Humira.

Not yet, he said. Perhaps if this next tier of drugs don't work, but I think I want to try something else.

Well, now. Miss smarty pants Julia didn't know that there was another tier of drugs in between DMARDs (disease modifying anti rheumatic) and biologics. But I learn quickly. Dr. K. went on to describe his experience treating PA with two drugs in combination:the immunosuppressant cyclosporine (modified), and the DMARD methotrexate.

Whoever packaged these cyclosporine capsules for use in sore, inflamed FINGER JOINTS has obviously never had to open one of these blister packs. Owie zowie.  

So. Time will tell how well our plan B will work. I'll keep y'all posted.

Watching Weight

About a month ago, I was out in the backyard with the schnauzers when it suddenly began to rain. Maggie and Lulu love to splash around in the puddles and I knew that I had one of two choices: either grab them and get them into the house, or leave them outdoors and then have to bathe two seriously muddy woogies later. So I scooped them up - one under each arm - and began to walk rapidly for the house. It didn't take long for me to realize that although each dog only weighed 15 pounds or so, lugging them around was harder than it looked.

After I reached the house and dumped them unceremoniously inside, I had to mop the sweat streaming down my face from the exertion.

I thought, Man, we're feeding those girls too much. They're getting fat.

Mags and Lulu pranced around me, happy as clams. They love being carried around.

After I settled in on the couch I grumpily thought about how much effort it took to lug around an extra thirty schnauzer pounds. And then.......

Ah, geez. I really hated to think about it.....but it was abundantly obvious that there was a lesson to be learned from this experience.

Yes. I would get around much easier if there were thirty less pounds of ME, too.

Coincidences are amazing things. Just a few hours later, the phone rang - I was still cooling my heels on the couch - and it was my friend Susan. She and I chatted for awhile and then she asked the question: So. I'm going to join Weight Watchers. Would you consider going with me? I'm not saying that you need to join, but, it sure would be easier if I had a buddy to go with me. And they're having a free-to-join promotion going on right now.

Sigh.

She was being very kind. Of course I really needed to lose weight. We talked about it a for awhile, and I promised her that I would give it some thought. As I mulled the prospect of counting calories or points or whatever, and regularly weighing myself (shudder), and writing down every morsel that I ingested, I felt myself coming up with a gazillion excuses why a successful weight loss program would just be impossible for me at this point.

Can't do it. On prednisone. Carb cravings. Blah blah blah blah blah....

Hm. This was sounding familiar. Didn't I use the same excuses to avoid regular exercise? Yes. Yes, I did. And I am still enjoying floating around the pool twice a week.

I called Susan back before I lost my nerve and promised that I would join her at the next weigh in. And, about a month ago, I did.

Yikes. This. Is. Hard.

And MANGO MARGARITAS are really really high in calories and points. And I've only lost about five pounds. Wah wah wah wah....

Ah, but it was really hard going to the gym the first time too. I've made a commitment to myself to give this the ol' college try for six months, and then I'll re-evaluate if this is an effective weight loss program for me.

I'll keep y'all posted.

Image found here. 

A and B

Yesterday was less than pleasant. When the kids were little, we used to call days like those arf and barf days.

Yessirree.

Thank goodness for sparkling water and gingersnaps. See ya'll tomorrow.

New Diagnostic Tool in Sjogren's Syndrome

Check this out.

Who has had a lip biopsy? And really wished there was a less painful way to diagnose Sjs? Raise you hands, please.....wow. That's a lot of sjoggies.

A study is underway that shows real promise in eliminating the use of painful and often unreliable lip biopsies - it's focus is to identify biomarkers in saliva for use in diagnosis of Sjogren's syndrome:

...the US study was established under the objective of expanding the clinical utility of the salivary biomarkers by evaluation in an independent cohort of US Sjogren's Syndrome patients.... 

Researchers collected unstimulated whole saliva samples from 30 well-characterized pSS patients, 30 patients with clinically-diagnosed rheumatoid arthritis (RA) and 30 healthy subjects.....a panel of 3 salivary mRNA biomarkers (B2M, GIP2 and MNDA) and 3 protein biomarkers (B2M, SSA and SSB) were validated in both European and US population cohorts, thus permitting the translational and clinical utilization of these biomarkers in a non-invasive manner for real-time cost effective clinical applications.

You can read the entire article here, on Medical News Today.

Gorgeous lips that don't look even remotely like mine found here. 

Great Comments!

Image found here.

A couple days ago, I asked for the titles of books about Sjogren's syndrome that y'all found helpful. Check out all the great suggestions in the comments on the Recommended Reading - Sjogren's Syndrome post.

In a few days I'll do a summary of the titles and rationale. Keep those suggestions coming!

Ed 'N Al

My buddy Ed the crow has a much better view from his perch today than he did a few days ago.

Yay for sunshine.

And he has a friend today.....I think I'll name him Allen. Al for short. Yep. Ed 'n Al. Edgar and Allen. Wonder what critter I could name Poe?

And what is the difference between a crow and a raven? Do only ravens quote, "Nevermore......."?

Recommended Reading - Sjogren's Syndrome

I have more scattered all around my house. And no, the library book is not overdue. I BOUGHT it from a used book store. Tsk. 

Recently I received a letter from Andrea, who has been experiencing Sjogren's symptoms for five years but only recently received her diagnosis. She described her feelings about becoming a sjoggie this way: "Seeing what my body is doing is like watching a science experiment unfolding and would be fascinating if it wasn’t happening to a living, breathing human!"

What an excellent observation!

Andrea asked for my recommendations for books about Sjogren's syndrome (see my list on my left sidebar) and asked me to whittle down my list to two definitive books.

Hm.

A great question. A difficult task. Everyone comes to this disease with differing levels of understanding about autoimmune disease, and each book seems to take a different approach in meeting those needs. For her particular situation, she chose The New Sjogren's Syndrome Handbook edited by Daniel J. Wallace, M.D. and The Sjogren's Syndrome Survival Guide by Terri P. Rumph Ph.D, and Katherine Morland Hammitt.

Andrea's question provided an opportunity for me to scrutinize my little library of books focused on autoimmune disease, and sent me off to search for more titles that may be of interest.

What books do you look to for good Sjs information? Which books have you read that you felt were useless or misleading? Or especially insightful?

Share them with us!

An Overcast Kind Of Day

Yesterday was cloudy and drizzly. As I was sipping my morning cup of tea, I noticed one of my feathery friends perched in his usual spot atop one of our pin oak trees. He looked pretty impressive in an Edgar Allen Poe sort of way.

I think he's some kind of a crow but he never gets close enough to the house for me to know for sure. He spends hours sitting up there. I call him Edgar, of course. Ed for short.

I name everything.

After my tea, I headed out in Goldie to the community center, where I spent some time on the exercise bike. The center has huge windows but yesterday the view was awfully dreary.

I know. I live in the Pacific Northwest. That's just what the weather is like here in March. But for some unknown reason, I felt my spirits dampen along with the cloudy sky.

Until......I headed down to the locker room to get ready to get into the pool and saw this:

Snort. Hoo ha! This is the actual sign. Posted on the actual locker room door. Taken with my own actual camera. Just ask Terese - she's the one that noticed it first.

Ahh. How can a person be gloomy after reading this sign? I mean - can anyone think of any kind of scenario which would involve DRINKING FROM THE TOILET IN A PUBLIC RESTROOM??

Nothing cheers me up better than silliness. I'm still snickering.

Cluck cluck cluck....

I have been pestering John for awhile to consider letting me have a few chickens in our back yard.

Chickens??!!!??? he said.

But they're so cuuuuttteee! I said. And we could have all the fresh eggs we wanted.

He rolled his eyes.

Jul. Two years ago you said you couldn't live without a goat.

I still say that he would mow the lawn for us.

Sure. AND eat the blueberry plants and the strawberry bed and jump over the fence and poop everywhere and we'd have to feed the stupid thing and build a goat barn and...

OK, ok, already. I know - an adorable frisky little miniature goat might be a teensy bit impractical. And I know that our homeowners association would frown on us having one. I'm not going to bring up the issue of a furry sweet little shetland pony to keep me and the goat company, either. See how good I am? I patted his arm and looked pleadingly at his stern silhouette.  

BUT..... chickens? They're so small and fluffy and cute. And as long as we wouldn't have any roosters, it's legal to have them here. And they eat bugs! And lay eggs! Even Uncle Sam says we should raise chickens. Just two or three? C'mon, honey, puhleeeezzzeeeeee......

John put on his best patiently-explaining-but-firmly-refusing expression. I really dislike that expression since it usually means that he has dug his heels in and thus it is impossible to persuade him to change his mind. Dang.

Jul. (Also not a good sign. Sentences which begin with my name usually deliver bad news.) Ever since we've been married - and this started long before you became a sjoggie, missy - whenever you thought we should do something, it really means that I should do that something.

Of course. What's your point?

He sighed. His expression didn't change. Drat.

We have lots and lots of room in the back yard for a chicken coop, I exclaimed.

See?

....and we could build a cute little chicken coop right between the potting shed and the green house. And paint it yellow to match the house and put adorable little white window boxes with geraniums on it. Perfect. So what do you think? Honey?........Honey?

Silence.

So this chicken acquisition conversation took place as we were driving down to church on Sunday. In spite of my very best talking points, John didn't say anything but just stoically kept driving, which was yet another ominous indication of his resistance to buy into my chicken plan. I decided not to press the issue but resolved to do a seriously poultry - focused investigation.

Today, after spending hours and hours online, I have reluctantly come to the very surprising and disappointing conclusion that John is.....it is just killing me to write this.....John is.......sigh.....right.

I arrived at this decision after reading a delightful blog entitled Hanbury House, written by Lianne, who lives in California and does an admirable job in making the most of a very small urban lot. She grows fabulous organic produce and has a beautiful little flock of chickens who provide lovely fresh organic eggs. However, Lianne is quick to point out that keeping a flock of chickens out their back door is not for everyone. Her post entitled The Darkside of Backyard Chickens was persuasive:

• Noise- All chickens, not just roosters, make some noise.  Some individual chickens are quieter than others, some breeds are typically less noisey, but once pullets start to lay, they all get more vocal.  Even my super quiet bantam cochins announce egg time.
• Vacations-We have to arrange a pet sitter when we go out of town that doesn’t mind taking care of chickens.  Sometimes it can be difficult if my close neighbor (who also has chickens) is also out of town.
• Droppings- Chickens will poop on the patio, outdoor furniture, or driveway if they have access to those areas.
• Garden Damage- The hens can damage tender plants with their scratching and dust bathing.  However, my bantams do less damage than my large fowl hens used to.  They like to kick mulch out of garden beds looking for goodies to eat.  They will nibble and sample all of the plants.  When they find something they like, they will eat it unless it is protected.

Lianne has written several other logical and persuasive don't-own-chickens-unless-you-are-energetic-and-very-commited-to-them items on her list. You can read them all here.

I hate it when people act logically.

Stupid logic.

Good Things

Schnauzers in sweaters.

Floppy fragrant hyacinths.

Dinosaur-ed Godson belly.

Rainbow.

Low-fat, high-flavor muffins.

Easy recipes.

Low-fat Pumpkin Muffins

• 1 box white cake mix
• 1 fifteen ounce can pumpkin
• 2 egg whites
• 1/4 cup water
• 1 tsp. vanilla
• 1 tsp cinnamon
• 1/2 tsp. nutmeg
• 1/2 cup white raisins
• 1/2 cup chopped walnuts

Mix all ingredients just until combined. Divide evenly into 24 muffins.
Bake at 350 degrees F. for 15 minutes, or until top springs back when lightly touched.

2011 Sjogren's Syndrome Foundation National Patient Conference

This year's SSF National Patient Conference is entitled "Your Passport To Learning" and takes place on April 1-2, 2011 at the Hyatt Regency Reston in Reston, Virginia.

Here's the information found in this month's issue of The Moisture Seekers:

As a Sjogren's patient, it's easy to feel confused or overwhelmed by the abundance of information available about the illness and how it affects your body. But here is your Passport to Learning for an educational journey to take control of your health and day-to-day living by learning from the best minds dealing with Sjogren's. This April, join fellow Sjogren's patients and their family members as well as healthcare professionals and other experts who specialize in Sjogren's at the 2011 SSF National Patient Conference in Reston, Virginia (just outside of Washington, DC). 

SSF programs are the best Sjogren's patient education opportunities in the country. They have helped thousands gain a better understanding of Sjogren's and will help you, too. This two-day event will feature an array of presentations from the country's leading Sjogren's experts - physicians, dentists, eye care providers, and researchers - who will help you understand how to manage all key aspects of your disease. 

Call 1-800-475-6473 or visit www.sjogrens.org today to receive the latest information. 

I have had the opportunity to attend a few of these national conferences, and I recommend them highly. They provide a wonderful opportunity to not only learn more about Sjogren's, but also to meet other people who truly understand what it means to live life as a sjoggie.

What A Corker

So I was floating around the community center's pool yesterday.

Woo! Yes, I went back. AND had a grand old time.

I love to just lie back and let my, ahem, natural buoyancy float me to the surface of the water. With arms outstretched and toes just peeking out of the water, I could just blissfully float the day away. So easy. So relaxing.

So as I was bobbing around in the unusually quiet pool - the senior water aerobics class was still an hour away - I had a chance to mull over the fact that floating was effortless for this old body. I idly wondered why as I counted the white metal beams on the ceiling as I drifted underneath each one.  Eleven...twelve....thirteen.... Man. A thought occurred to me and I stood up.

Adipose tissue, yes, folks, - fat - FLOATS.

Dang.

I lay back and resumed my drifting. Every now and then I kicked a bit and paddled my arms around - I was supposed to be exercising, after all - and realized that this was the reason Terese can't float like I do. I have a suspicion that she has a much different muscle/fat ratio than I.

Right on cue, Terese came out the the locker room, grabbed a foam noodle-shaped floatie, and made her way over to join me. I immediately confronted her about her buoyancy deficiencies.

You don't float because you have too many muscles!, I said, and pointed an accusatory finger at her. Which was wrinkled because I had already been in the pool for a half an hour.

"What are you talking about?!"

We've discussed the fact that it's hard for Terese to float before. And now I had figured out why - she's been working out faithfully ever since we joined the community center. The nerve.

"But I haven't lost a pound!"

That's only because you don't have much to lose, I told her. And muscle weighs more than fat.

It's hard to glare at someone when you're horizontal on top of the water. You have to pick up your head and kink your neck. Ruins the whole floaty experience.

Terese just laughed. It's getting so much harder to ruffle her feathers.

As we chatted and slowly swam the length of the lap pool, I realized that perhaps there was a lesson to learn from this new knowledge.

That maybe it was time to reduce my adipose tissue and make me less like a floating cork? Or a plus sized fishing bobber?

Nah.

Gotta fatten up that Terese. We're going out for dinner tonight. I may order a dessert for her....mwahahaha.......

Image found here.

Sjogren's Syndrome Foundation Patient Education Sheet - Raynaud's Syndrome

The latest issue of Sjogren's Quarterly, published by the Sjogren's Syndrome Foundation, includes another of their excellent patient information sheets. This quarter the topic is Raynaud's Syndrome.

PATIENT EDUCATION SHEET

Raynaud's Syndrome

The SSF thanks Ashley Beall, MD for authoring this Patient Education Sheet. Dr. Beall is a Partner with Arthritis and Rheumatism Associates, Wheaton, Maryland.

Raynaud's Syndrome ( sometimes called Raynaud's phenomenon) is defined as repeated episodes of color changes in the fingers and/or toes, with exposure to cold temperatures or during episodes of emotional stress. The color changes are due to a spasm of the blood vessels that feed the fingers and toes. The digits typically turn very white, then can take on a bluish color with prolonged exposure to the cold, and finally can turn very red as blood flow resumes. Raynaud's Syndrome occurs in approximately 15-30% of patients with Sjogren's Syndrome.

Some things that you can do to control your Raynaud's Syndrome include:

• When you know that you will be exposed to cold temperatures, wear layered clothing. This will keep your core body temperature warm and keep the vessels feeding the fingers and toes from spasm.
• Always carry a jacket with you on outings, as you may find yourself in an unexpectedly cool area.
• Wear a hat and cover your face and ears with a scarf in cold temperatures.
• Always wear hand coverings in cold temperatures. Mittens are best, as they will use the body heat generated by your fingers. However, a good pair of insulated gloves is also helpful.
• Wear heavy socks or layers of socks to keep feet warm at all times.
• Keep your home and office space comfortably warm (greater than 70 degrees is best).
• Avoid reaching into the freezer both at home and in the grocery store.
• Use insulated containers when handling cold drinks or food.
• Rinse food with warm water instead of cold water.
• Wear protective gloves when washing dishes.
• Use disposable heat packs as needed for your hands and feet. These are available at many sports good stores.
• Always let the water warm up before getting into the shower and keep the bathroom door closed when bathing or showering to hold in heat.
• When possible, have a loved one warm up your car before getting into it on a cold day.
• Moisturize your hands and feet every day to prevent your skin from cracking.
• When your hands or feet start to feel cold, wiggle your fingers and toes, move your arms and legs around to get blood flowing, or put your hands under your armpits to warm them up. 
• If you have access to water when a flare starts, run warm water over your fingers and toes until skin color returns to normal.
• Do not smoke - this constricts the blood vessels that feed the hands and feet.
• Talk to your doctor about your symptoms. Several medications can be used to help the vessels stay dilated, including a class of blood pressure medications called calcium channel blockers. Some medicines, such as beta blockers used for high blood pressure, may make Raynaud's worse. 

For more information on Sjogren's syndrome contact the Sjogren's Syndrome Foundation at: 6707 Democracy Blvd, Suite 325, Bethesda, MD 20817, or visit our website: www.sjogrens.org, or email us at ssf@sjogrens.org. 

Missing

Has anyone seen my sense of humor?

I seem to have misplaced it somewhere over the past few weeks. Every now and then, I catch the teensiest glimpse of it....but then it's gone.

I've looked everywhere, really, I have. In my sock drawer, the garage, the pantry, the doggie beds, gosh. I've turned this house upside down. It's just got to be here somewhere. I suppose the fact that I realize that it's missing means there's hope that I will eventually find it. I think that it took off about the time that my psoriatic arthritis showed up. Dang.

I've gotten so desperate that I've even thought of borrowing other people's idea of levity. Really. I've watched two Three Stooges movies, which didn't work AT ALL. I've spent hours on I Can Has Hot Dog and I Can Has Cheezeburger, and I managed to swipe a few giggles. Occasionally a guffaw. But dang. I haven't been able to discover a sense of humor that's truly like mine. Authentically mine. And before you say it, let ME just say that I know. It's weird. It's off-balanced. It's slightly kooky.

But it's mine, warts and all. If you find it, will you send it back to me? I miss it.

Image found here.

Benlysta Approved By FDA

If I had a nickel for every time that I wished that the scientific world knew more about autoimmune disease, I'd have.......well, a whole lot of nickels.

It appears that research into the treatment of autoimmune disease is finally reaping some rewards far more valuable than nickels.

The FDA has approved the first new drug for use in the treatment of systemic lupus in fifty years. It's name is Benlysta (belimumab) and was co-developed by Human Genome Sciences and GlaxoSmithKline.

Benlysta is a monoclonal antibody (MAb) and is classified as a biologic agent. A biologic agent uses portions of the body's natural defense mechanisms to treat a disease. In this instance, Benlysta targets B cells - specialized white blood cells active in the autoimmune process. It limits B lymphocyte production by binding to a B lymphocyte stimulator (BLyS).You can read more about the specifics of this very interesting but technical discussion here and here.

Belimumab is not a cure for SLE, and it provides only modest success in treatment: only 30% of patients enrolled in clinical trial saw benefits. However, it may be beneficial for patients who are dependent on long-term steroid medications in reducing the use of steroids and in doing so, reducing also their potentially damaging side effects.

In studying this particular type of treatment, researchers also gained new and valuable information about the development and mechanics of SLE; this summary found on WebMD:

One of the hallmarks of lupus is that patients make antibodies to their own DNA, called anti-nuclear antibodies, or ANAs. Blood tests for ANAs are sometimes helpful as an initial step in diagnosing lupus.

Researchers had long wondered how that happens since DNA was thought to be protected inside cells. Then, in 2004, a team of researchers discovered that neutrophils can die in an explosive way, shooting strings of cellular material studded with proteins and bits of nuclear DNA out like webs to entangle harmful bacteria, viruses, or fungi. These neutrophil extracellular traps, or NETs, get slung outside the cell.

“They’re called NETs because they really look like a net, like a spider web,” says study researcher Michel Gilliet, MD, a dermatologist at University Hospital Lausanne, in Switzerland. The cells, he says, “shoot them out.”

In healthy people, once these NETs enter the liquid space between cells, the bits of nuclear DNA degrade quickly and probably don’t cause any problems, but Gilliet and his team found that patients with lupus have antimicrobial proteins called LL37 and HNP that appear to protect these bits of DNA from being broken down by the body.

Together, these proteins and DNA can trigger another type of immune cell, a kind of chemical factory called a plasmacytoid dendritic cell, which pumps out proteins that stoke the immune response.

One of those proteins, called type 1 interferon, is often present in high amounts in patients that have lupus, which has largely been another mystery of the disease.

Type 1 interferon, it turns out, triggers neutrophils to release more NETs, setting up an apparently self-perpetuating disease process.

“What this suggests is that there is a vicious cycle between the production of interferon, the way the neurtrophils die and the increase in the production of auto-antibodies, so this is a very, very efficient pathogenic loop that amplifies itself,” says study researcher Virginia Pascual, MD, an instructor of medicine at Baylor Institute of Immunology Research in Dallas.

You can read more about these new findings in autoimmune research here.

Starting Over

Keep on Truckin'. Classic cartoon by R. Crumb.

Ahh. It's so good to rejoin the human race once again.

The powerful effects of a flare scare and amaze me. Before the latest flare hit, I was flying high - swimming and exercising twice a week and avoiding daily naps. OK, ok, so maybe not flying high, but gliding along just above sea level. But flying, nonetheless.

Then, BAM. I'm horizontal and twiddling my thumbs in between naps. And back to square one in my exercise tolerance.

I headed over to the community center pool yesterday, hoping that I could step into my routine somewhat close to where I left off, but nope. Not to be. It was obvious after twenty minutes paddling around the pool that I would have to gradually work my way back to a forty five minute float and kick session. I didn't even try walking the track or using the exercise machines.

I suppose I should be glad that I was able to do any exercise at all since just three days ago simply sweeping the floor sent me searching for a couch, bed, or anywhere to flop myself flat.

I guess I'll just have to keep on keepin' on. Things could be worse.

Reality

I feel silly for all my whining and griping over the past few days as I was tucked into a comfy bed watching television.

The disasters in Japan are incredibly sad. Horrifying. Heart-wrenching.

There's nothing I can say except that my prayers are with the Japanese nation. May God bless you all.

Image found on Zazzle.

Take The Quiz

Over at Sjoggie StAHMer, Blogger Mamma's latest post is a very interesting one. She invites readers to take a quiz - one in which readers try to identify those with a chronic illness simply by their pictures. (You may recognize one pic and score one freebie answer).

It's a good post. I can't tell which of those other people have chronic illnesses. I'll bet you can't either. So go try!

Did You Spring Ahead?

Awesome flower clock found here. 

Yikes. We almost forgot to set our clocks ahead.

I do love daylight-savings time. But it appears that most people's bodies don't like the transition. This Consumer Reports Health Blog entry entitled Daylight saving time: Short-term health risks, long-term gains discusses the body's reaction to the whole spring-ahead by an hour experience:

......If you’re like most Americans, you’re already slightly sleep deprived. And the extra hour lost over the weekend—when most people typically try to make up their sleep debt from the week before—can worsen the problem. That extra dose of sleep deprivation can not only make you feel grouchy for a few days, but it might also temporarily increase the risk of car crashes and even increase your risk of heart attack....

You can read the whole article here.

Toenails Tell All

Image found here. 

Amazing!

Story found on Medscape, here.

Toenail tests tell whether you're at high risk of getting lung cancer from cigarette smoke, even if you're not a smoker.

The finding comes from the toenails of 210 men with lung cancer and a comparison group of 630 men without lung cancer enrolled in the Health Professionals Follow-Up Study. Most of the 33,737 medical professionals in this long-term study donated toenail clippings in 1987.........

......"We knew tobacco was harmful, but we are now learning it is even more harmful than we had previously measured," Al-Delaimy says. "We are getting a better estimate of the true risk of tobacco's lung effects. And this could be applied to other disease outcomes such as coronary heart disease, too."

The findings don't surprise tobacco and health expert Michael Eriksen, ScD, director of the institute of public health at Georgia State University. Eriksen was not involved in the Al-Delaimy/Willett study.

"As this study shows, evidence of exposure to smoke can be found throughout the entire body -- even the tips of your toes -- and that this exposure to smoke increases the risk of lung cancer," ........Al-Delaimy and Willett report their findings in the American Journal of Epidemiology, published online ahead of print on March 2.

see more Lolcats and funny pictures

This One Is Nasty

So. I really don't want to whine here, but yikes.

My butt is still firmly anchored to my couch. I keep trying to get up and do stuff - big, hard, difficult things like getting dressed or loading the dishwasher, I'm not getting anything accomplished. Good grief.

It's so frustrating because the scenario over the past three days goes something like this: I'm horizontal somewhere. The couch, recliner, bed, floor, whatever. While I'm lying flat, schnauzers packed in around me, twiddling my thumbs - but not too strenuously - I feel OK. But when I get up and spend a few minutes on a simple task, those all too familiar crash symptoms take over. Again. My face feels ice-cold - so weird! - my muscles begin to feel like they're made from lead, my joint pains begin again, and I begin to shiver as though I'm running a temp.

Then I get all nasty and cranky. It's a good thing John can escape to work for much of the day.

If I try to push through the weirdo symptoms, then I began to perspire and tremble. So I flop back down anywhere, and after about a half an hour, I begin to feel OK again. Until I get up one more time.

I promise not to put up any more whiney-butt posts after this one, at least for this flare go-around. But I feel that I owe it to y'all to be honest. I'll bet most sjoggies have felt this way before, and it's difficult for us all, isn't it? It's a good thing that even BICJ is too tired to misbehave or I'd REALLY be in trouble.

Sit. Stay. Good Julia.

You can buy your very own print of Picasso's "Rest" here. 

Aw, crumb. I hate it when I have to be responsible.

I have put myself on a self-imposed house arrest. One thing I've learned over the years is that sometimes there's nothing else to do but to plant my butt in bed or on the couch for a few days when I crash. Nothing else works as effectively as rest. Pure and simple.

Wouldn't it be great if we could put therapeutic rest into a capsule, pill or elixir? It's tempting to start swilling down caffeine or popping no-doze, but I know without a doubt that when I ignore the clear symptoms of an impending crash and artificially boost my energy levels with caffeine or denial, my crash is simply of a longer duration and of much worse severity.

I really really want to sneak out of the house and zip off in Goldie - but from whom, exactly, would I be sneaking away from? Certainly not from my Bratty Inner Child Julia - she'd be the one behind Goldie's wheel. And not John, either. He actually trusts me to be a responsible person in the management of my disease. Mags and Lulu don't care who is driving any car...they want to be in it regardless with heads hanging out of the windows.

Ah. Guess there's nothing to do but to do it. ZZzzzzzzzzzz.

Ah, Geez..

Today has been hard. I hate hard days.

I'm really tired, totally brain foggy, I hurt everywhere, and I'm cranky. In other words - nothing really is new. I've had days like this for the past eight years.

I think the hardest thing about yukky days is that they're so unpredictable. The biggest question is always WHY? Why am I feeling crummy today when yesterday I was OK? I try to pace myself, I try to get regular exercise, I try to eat somewhat healthily, and I take the same medications every day. And in spite of it all, there are days when it's a major effort to just shower for the day.

I had made a coffee date with a friend of mine for today, and I knew I was in trouble about five minutes after awakening. I got up under the mistaken assumption that I was heading for the community center and pool. After pulling on all my clothes and packing my stuff in my gym bag, I realized that today I was NOT going to the pool, but meeting Cheryl.

So I headed back upstairs, took a shower, did my hair and makeup and chose a different set of clothes. By the time I was in Goldie heading down the freeway, I was already trembling and perspiring from the simple task of taking a shower and changing clothes..... and seriously wishing that I had cancelled.

I have absolutely no clue why it was easy yesterday and so stinkin' hard today. I sure wish that autoimmune disease came with some kind of instruction manual.

Doggone Good Day

Yesterday morning we had a brief break in the clouds. The woogies and I took advantage of the fleeting sunshine to head over to the doggie park. 

My friend Susan and her dog Skippy joined us. What fun. 

I think several laps around the park is equal to 45 minutes in the pool, don't you? 

Susan and I have matching stripey pants.

We headed home just as the clouds rolled back in. We have such great timing. 

Plaquenil and Hypoglycemia

Yesterday I was cruising around on the Sjogren's World Forum and came across an interesting topic of discussion.

One of the sjoggies there who is diabetic noted that her blood sugars were consistently lower after she began taking Plaquenil (hydroxychloroquine).

Hydroxychloriquine is a disease modifying anti rheumatic drug (DMARD) commonly used as a first-line medication in the treatment of Sjogren's syndrome and other autoimmune diseases. How many sjoggies out there are on this medication? Can I see a show of hands? Oooo. Lots and lots.

So back to the Sjogren's World Forums participant: this person noticed that after beginning to take Plaquenil, it became more difficult to keep her diabetes in control: occasionally her blood sugar became too low and she had symptoms of hypoglycemia: feeling very anxious, tremor, feeling suddenly very hungry, perspiring heavily, and feeling faint. Several others chimed in, many of whom were not diabetic, and said that they noticed the same thing.

Have you noticed feeling as though your blood sugar bottoms out after taking Plaquenil? I can't say that I have noticed this, although I would guess that my average daily calorie consumption would prevent any kind of drop in my blood sugar.....from anything.

After doing a bit of research, I was surprised to learn that although this side-effect is relatively unusual, it does occur. This article in the Oxford Journal of Rheumatology from 2008 did indeed conclude that:

.....hypoglycaemia may develop in non-diabetic patients with RA. Therefore, fasting blood glucose and HbA1c levels should be monitored during the first 6 months of treatment for symptomatic and asymptomatic patients, respectively. We came to notice that our patient was suffering mild symptoms of hypoglycaemia, only after he had started receiving HCQ (hydroxychloroquine) for RA treatment. This being the case, we suggest that patients who are to receive HCQ should be well informed about such ill-effects of HCQ as hypoglycaemia. (Bolding and parenthetical additions mine). 

You can read more about hydroxychloroquine and it's effect on blood sugar and insulin here and here. Image found here.

Wowsers. Plural.

Amazing.

Here's wowser number one:

This photo was taken by photographer Anton Jankovoy as he spent months camping at the foot of the world's highest peak patiently waiting for the right weather conditions. It's called a star-trail image, which means that the camera captures the movement of the stars over a long period of time.

Read more about this incredible photo here.

Wowser number two:

Maggie? Lulu? Watch this. 

Thanks to Stephanie for the link to the outrageously talented Jesse. 

The Question For The Month

According to the WEGO health activist site, March is "Health Disclosure Month":

To tell or not to tell – that is the question. If you’re living with a chronic condition, have health symptoms, or are undergoing treatment of any sort – disclosing that information to others has been a topic that’s crossed your mind. Who do I tell and how much do I say? When is the right time to bring this up? Is this TMI? Will this change how people think of me? Will talking about my condition influence my work life, love life, and family life? How can I share what I’m going through with people I care about without worrying them? How do I ask for what I need?

I'd love to hear how y'all feel about letting the cat out of the bag regarding your health.

...I Am Hardly Sorry For Upending Thee..

So this is NOT a catechism class type post today. But to understand the humor that follows, you have to know that one of the prayers that Catholics use in preparation for the sacrament of Reconciliation, (or what used to be called Confession), is called the Act of Contrition and, although you don't have to say these exact words, most often it goes like this:

O my God, I am heartily sorry for having offended You and I detest all my sins, because I dread the loss of heaven and the pains of hell, but most of all because they offend you, my God, who are all good and deserving of all my love. I firmly resolve, with the help of your grace, to confess my sins, to do penance and to amend my life. Amen.

That being said, I really enjoyed this post from Matt & Pat Archibald's blog:

........My eight year old daughter then came down the stairs, still rubbing her eyes.

“Say the Act of Contrition,” I demanded before I even said good morning. Now, before you think I’m a crazy lunatic you must know that tonight was her first reconciliation. A big night. So I’m not a crazy lunatic, just a regular kind of fathery type lunatic who’s been studying the Act of Contrition to the point where at night we all dream about how heartily sorry we all are. “Just say the Act of Contrition,” I said. “One last time and I’ll never ask again.”

The three year old walked into the kitchen saying, “Oh my gosh I am hardly sorry for having upended thee…”

You can read the rest of this rib-tickling post here.

Ah. I love those times when we can laugh at ourselves. Of course, my religious sense of humor is slightly off kilter. I think it all began when my dad told me and my sibs as teenagers to "Get your ass to Mass!" We all laughed our way to church.

Looking for a little more Catholic humor? Watch this:

It's All Her Fault

So I went back to the community center today. I have to say that I'm a bit surprised that I continue to find myself walking into the building of my own free will. As in nobody dragging me inside, or frog-marching me through the doors with my arm twisted behind my back. Nope. I just.....go there. Not every day, but two to three times a week. I know - it's really not that frequent for most people, and not even close to the recommended five times per week, but for me, it's astounding. Amazing.

Today, I went there to try out a water exercise class offered for those with arthritis or joint issues. So I stowed my stuff in the locker room and was floating in the pool just as the class was beginning. I decided that I'd just lurk in the back row and observe.

There were about twenty people in the class, and the instructor stood pool-side wearing a headset/microphone thingie. Soothing music was playing in the background and the instructor was directing everyone's movements. Everyone - well, except me - began to quietly follow her instructions. But somehow, I just.....just....couldn't do it.

It didn't take long before I felt the hairs on the back of my neck rise along with my sense of irritation. After about five minutes of listening to the soothing music and the gentle voice of the instructor, I had to fight down this irrational urge to leave the pool, walk over to the CD player and stomp on it, and then push the instructor face-first into the water.

What is wrong with me? Seriously.

Luckily I was able to squelch my violent impulses. In thinking about it as I floated around the pool doing my own thing for the rest of the class period, I decided to put the blame for such a bizarre reaction squarely on my Bratty Inner Child Julia. BICJ comes in really handy for that sort of thing. She really hates being told what to do, by anyone. Anywhere.

Yeah. That's it. If I didn't have BICJ hanging around my psyche, I would definitely been a willing participant in arthritis swimming class. And I wouldn't have scarfed down a half of a box of gingersnaps after class, either.

It's all HER fault.

Pool image found here. 

UII and Villanova Project Pictures, As Promised

Did you submit a picture to the UII/Villanova University project? It's in here! 

I've posted before about an awesome project that my friend Jenny from Understanding Invisible Illnesses and Vilanova University put together entitled Invisible Illnesses Made Visible.

Jenny has written an extensive and interesting post in which she describes her experiences in working with others to prepare the display and then taking part as a speaker in a panel discussion. You can see more pictures and read the whole post here.

These moving paragraphs were printed and placed prominently among the pictures:

This display represents 25 men, women, and children from four countries who live with one or more of the 39 chronic and "invisible" conditions listed.  Here, they have revealed to you the "hidden" side of their lives - the things they require to get through the day, the medications they need just to survive, and the scars & marks they usually conceal.  Fear, shame, and stigma often force them to hide these truths.  Only education and society's acceptance of a person for everything they offer can change this story.  

For some, this is the first time they have revealed these images to anyone.  Today, they have stopped hiding.

Please say a prayer for those pictured here - as well as the millions of others who are forgotten, mistreated, and ignored every day - that love will prevail and awareness and research for treatments & cures will follow. 

Helping Those Hands

I'm thinking that the only positive that's come into my life along with psoriatic arthritis is the potential to shop.

I'm all about the accessories - to anything. During my sporadic forays into dieting, I needed to buy food scales, special measuring cups, and food journals. Ah, and the best part of making soap? Shopping excursions to find unusual oils, fragrances, and soap molds.

Why should acquiring accessories for another autoimmune disease be any different?

Right now, my favorite sjoggie uniform of a crisp cotton blouse topped by a sweater and worn with comfy bluejeans is too hard to put on. Buttoning waistbands and blouse sleeves requires too much from my swollen and painful DIP joints. Stupid DIP joints....but I discovered that track suits, wait - they are called activewear now - are stretchy, easy to slip into, and almost indestructible. Here's my favorite so far, found at JCPenney:

So comfy and fit so well that I bought two sets in different colors. And in spite of my best (or worst) goober incidents, are stain-proof.

Want to see my latest joint-sparing gadget?

Am I the only person in the whole world that hasn't discovered apple slicers yet? A friend of mine suggested that I use one. Woo! I can core and slice an apple just using the heels of my hands!

I'll bet there's oodles of other great gadgets out there. Anyone have other suggestions?