Good Question

Awesome Kanga Ruby found here. You need one if you want any chance at all to beat that crazy competitor Bev. 

My recent crash and burn and acceptance post prompted lots of support and good thoughts (thanks much!) and also several good questions.

So I'm motivated to close my Bejeweled game temporarily and answer them to the best of my foggy ability. Oh, and Bev? Just because I'm taking a very brief hiatus from the game doesn't mean that I've given up. Not even close, woman......yeah. Bring your best Bejeweled game, girl. Bring it. I've got the Kanga Ruby goin' on. You're toast. Just sayin'.

There's something bizarrely rejuvenating about hanging out on my couch with my laptop balanced on my belly playing mindless facebook games during a flare. No matter how tired I am, when Bev challenges me to a DUEL I can't resist. I find the energy and focus somehow.

Do you know how much concentration just one game takes, Miss Bev? Hm? What's that? You don't care? You'll trounce me anyway??

Vicious. She's one vicious woman. Which is why I love her.

But I digress. What was I talking about now... Whew. Frenzied online combat muddles my thoughts.. Oh, righto. Questions. Think I'll take the easiest one first, this from Amy: Did you snap that picture Sunday?

Nope. I took the picture of our church's front steps last summer after they were scattered with rose petals. I think had I tried to take a picture on Sunday, it could not possibly have ended well.

LM says: I still haven't learned. Maybe one day I'll eventually come to that point. It seems to sneak up on me, even when I recognize the signals. Or perhaps I'm ignoring them hoping it will all go away?  

Trust me -- denial only makes the crash even harder. Tough concept to master. I still haven't got this one conquered yet, either.

New sjoggie Mirabella comments: Even though Sjogren's is common here in Finland too, it is very difficult to get information on how to cope with SS. I have now decided to follow your path, and have set up a bi-lingual blog (English and Finnish) in an effort to start collecting information and sharing my experiences in trying to come to terms with this diagnosis. I've added your blog address to my blog, hope that is ok: http://itchingandbitching.blogspot.fi.

Mirabella -- sure, it's ok. Welcome to our little sjoggie blogging world! We need all the Sjogren's blogs that we can get in hopes of increasing awareness of autoimmune disease worldwide. Keep on writing! BTW -- I visited Finland several years ago. Beautiful place.

And last but not least, Gill asks: Is this happening as you start to relax and unwind? This is one of the (thankfully) few symptoms I get. I have noticed that it happens as I stop/slow down rather than when in full flight. 

I think everyone experiences this in a unique way. For me, the symptoms of a crash begin early and unfold over time. If I were paying attention long before I got into the church sanctuary on Sunday, I should have known without a doubt that I was heading for trouble: my first clue should have been that my makeup was sliding off my face just as fast as I could slather it on. I should have given up the quest long before I even got into Goldie.... But like LM, it's hard for me to avoid denying that I've overstepped my boundaries.

So there you go. Time to return to a much more pressing quest: to obliterate my opponent. Yes, Bev. This means you.

The Moisture Seekers: Define a Flare

The October 2013 issue of the Sjogren's Syndrome Foundation newsletter The Moisture Seekers features this timely (as I'm writing this pooped out on the couch) Q and A on page one:

Q: I've heard others talk about "having a flare" when discussing their Sjogren's. What do they mean and how can I prevent one?

A: A flare-up, often referred to as a "flare" is a sudden, severe onset of symptoms. As example, you've been managing well, your symptoms have lessened and, having momentarily forgotten the pain and dryness, you've been living 'full out' as you used to. Then, suddenly, those angry symptoms are back.

Several points are worth keeping in mind. First, the symptoms of flares are usually very similar to the symptoms you had when your disease began. If a headache signaled the beginning of your disorder before, the recurrence of a headache may indicate the beginning of a disease flare. If a vague feeling of having flu presaged your going to the doctor when you were diagnosed, and this feeling returns, it as likely to be a flare.

It is for this reason that you must constantly check in and know your body and how it reacts. A certain way of avoiding flares is to write a diary of symptoms whenever you feel them. Linking them to whatever might have triggered them. If, for example, you worked over-long hours, or had an argument with your son's soccer coach, write it down. In the case of the workload it will be clear that you need to discuss with your employer your need to arrange your work hours to allow for a rest, and in the case of that soccer blowout, it will be clear that such activities are bad for your health.

Also, this is the time to report to your doctor and talk about new feelings or pains that are unusual. New symptoms may not only indicate a flare, they may also herald complications of treatment.

Treating a flare with attention and care will help you have fewer of them. Step back, take care of yourself, rest more often or make inroads to arranging your work day to allow such things, and you will go a long way towards having fewer occasions of "flare-ups."

"Flares" retrieved September 20, 2013 from http://www.sjogrensforum.com. Blog posts by Ruth Fremes MA and Nancy Carterton MD, FACR with Questions and Answers about living with and treatment of Sjogren's, authors of "A Body Out of Balance."

Need a good tool for tracking your symptoms? The SSF also has provided this useful worksheet, found on the SSF website, here:

Energy Crash and Burn: Defeat? Or a Time to Learn?

I love these steps. 

The cool moist air rushed to meet me as I pushed open the church's sanctuary doors. It had happened again, and I was not happy.

"It" was a familiar experience to me a couple of years ago: I'd wake on Sunday morning, take a shower, get dressed, and slather on some makeup. Even after dawdling over a cup of coffee and a bit of breakfast, by the time we headed out to the car to drive to church services, I would be able to tell that I was pushing my energy boundaries.

"It" played out true to form last Sunday almost as if all those months of rituximab-created energy had never happened. I felt as if I were in a time warp that zapped me back into my earlier Sjogren's years: as we drove into the parking lot, John looked over at me, and after a quick assessment, pulled up directly in front of the church. "Why don't you get out here, hon? I'll meet you inside."

The man knows me. I should just ask him how I feel instead of guessing for myself. He's always right.

After taking a seat in the back, I shrugged off my coat in the hopes of stemming the flood of exhaustion-induced perspiration.  My face began to slowly turn icy cold as surely as if I had begun to rub ice cubes over my skin. By the time John slid in beside me on the pew, I had serious doubts about my ability to participate in the service. The unwelcome symptoms of a crash and burn made me feel frustrated and angry.

Why now? I NEED this! I want to be here! I feel cherished, lifted up, and so loved here. I want my prayers to join with everyone else in this room. I want to listen to God's word. I want to sing. I want to hear Father's words of inspiration. And after it's over, I want to linger on the church steps, visiting and laughing and enjoying just being together with my spiritual family.

I toughed it out for the first half of the service, until waves of nausea began to wash over me and I realized that I wasn't experiencing any of the good things that I had wanted; instead I was just miserable. It was time to wave the white flag and call retreat.

All I had to do was tap John on the arm. He whispered: "Do you want to leave?"

I nodded, grabbed my coat and purse and followed him down the aisle after which I stood on the church steps in a fog. We rolled out of the parking lot with me in a sickeningly familiar posture: in the car with seat back completely flat, feet propped up on the dash, vents open and fan blasting cool air.

Dang. I hate the fact that this seems to be routine.

I was deep in thought as John carefully maneuvered the car around twists and turns in the road on our way home. I realized that there was one small thing that differed in this experience from years past.

I was thinking WHY? as I always do. But instead of thinking WHY ME? I was examining my morning routine step by step and evaluating the energy expenditure from each action. I was truly wondering WHY in terms of why this particular experience happened, and then WHAT could I do to minimize the chances that it would happen again.

Then my thoughts turned to wonder whether this little mental exercise was a capitulation to the reality of this disease. That I wasn't even allowing myself to entertain the thought of living without the presence of autoimmune dysfunction in my body. That I was giving in and giving up on the fight.

Or.....

Another thought slowly pushed it's way though the brain fog: is this what real disease acceptance is? To skip the tantrum phase of a crash and move on to the recovery and strategizing part of things?

After ten years of living with Sjogren's, I certainly hope so.

Have I finally arrived there?

Is This Too Obvious?

With Halloween fast approaching, I'm thinking if I should try to come up with some kind of costume.

I don't usually get into the costume thing, but it has occurred to me that my present circumstances are providing an excellent dress-up opportunity: since I'm already wearing a nighttime eyepatch, why not just give in and be a pirate?

Hm. How does one go about attaching a pirate's parrot to one's shoulder?

Tupperware for Sjogren's

Ready to start thinking about holiday shopping? FORTY PERCENT of your purchase of Tupperware will be donated to the Sjogren's Syndrome Foundation but only if you follow the link below.

Sjögren's Syndrome Foundation is partnering with Tupperware to kick start your holiday shopping! Order from: October 22 - November 22 And 40% of your purchase your will be donated back to the Foundation! Stock up on great items knowing that your purchase is helping the Foundation's life changing initiatives. Click HERE to start your Holiday Shopping! Make sure to forward this email to friends and family, because together we will conquer Sjögren's! Your support of our Tupperware partnership by purchasing an item will not only help the SSF but will also show Tupperware that the SSF needs their support. If you have any questions, please contact Steph with the SSF at (301) 530-4420 x227 or shilton@sjogrens.org.

Let Me Explain

My new hero. Image found here. 

I've been carrying on around here like a crazed woman, what with all my blabbing about being able to SEE, and donating my stash of old coke bottle bottom sized glasses, and my finger perpetually in the gee golly wouldja look at that! pointer position.

One of my friends made the observation that she was surprised at my over the top reaction to surgery. "It was just cataracts, right?"

Hm. Just cataracts.....yes. Yes, I guess it was. But to me, it didn't feel like JUST cataracts.

Well, Susan....yeah. I suppose you could say that but I'm afraid that I haven't done a very good job of letting y'all know how serious and scary they have been for me this summer and fall, I said as we sipped coffee at our favorite Starbucks.

She looked indignant. "Well, why on earth not? What are friends for?"

I guess I was trying really hard not to panic about it all. I feel as though all I do is complain about stuff already to you guys.

Susan rolled her eyes in disagreement.

I took another slug of my mocha and told her the story:

I know that for many people, their cataracts develop very slowly, sometimes over a decade or so. Not mine. They probably began as basic age related ones but the development was accelerated enormously by my prednisone use, especially after the increased doses required for rituximab infusions.

I began to notice changes in my vision in April of this year -- it was hard to describe what exactly I was experiencing except that I knew that things were blurry. Sometimes more than others. I went in for a vision check and was told that everything looked fine in my eyes except the development of a very small cataract in my right eye.

My vision continued to deteriorate rapidly after that appointment, so much so that by August, after having had several other checks with Dr. Young Gal, it became apparent that my cataracts had become much more dense and large and had formed in both eyes.

Four months. Just four months later, no computer screen seemed bright enough and no font large enough. I quit driving at night all together since I just didn't feel comfortable with my ability to see well enough. The light from oncoming cars seemed to fracture into thousands of specks of light. I couldn't see things far away. I couldn't see things close up, either. It became increasingly difficult to read road signs during the day and I tumbled down our basement stairs twice because I couldn't see exactly where to put my dumb stupid feet.

It was frightening. One of my greatest fears has always been that someday I would lose my sight and it seemed to be happening.....The irrational thought that talking about it all would make blindness a certainty was hanging around in the back of my mind. After my second fall down the stairs, I just sat on the concrete floor and cried, not from injury to my person but instead my pride.

Silly woman.

Dr. Young Gal reassured me that even though my cataracts were dense and had formed very quickly, she was confident that I was a good candidate for surgery and anticipated that my sight would be tremendously improved.

I hoped so. I rationally understood the discussion. But in the back of my mind lurked a nagging illogical fear that she was wrong, and that I was in serious danger of becoming blind. And that I had already sacrificed so much of my life and health to autoimmune disease, and it just would not be fair if my vision had to be affected too. Wah. Wah. Wah.

Fast forward to that magical day when I was wheeled out of the OR and raised a ruckus because I could SEE an exit sign. This is when the serious silliness began in pure relief. Enter goofy plastic eyeball cards and eyeball chocolates and maniacal laughter. Woo hoo!

Thank you thank you thank you: Dr. Young Gal, the awesome surgical and clinic staff, the company that made my lens implants, and the person that so long ago had the crazy idea that human eye lenses could be replaced.

And Florence Nightingale! And Louis Pasteur! And Joseph Lister! And Zacharias Janssen! And Hippocrates!  And Sir Howard Ridley who invented the artificial intraocular lens:

Intraocular lenses evolved secondary to the pioneering work of Howard Ridley, a British ophthalmologist.[16] He recognized that the penetration of shattered fragments from airplane windshields into the eyes of World War II fighter pilots when their planes had been hit did not always lead to damage. He created the first artificial lens from this material, leading to the creation of an entire industry.

So the celebration will continue. Would you LOOK at that! Good old Sir Howard.... You are the man. Seriously.

Nicole Edwards: That's MISS Grumpy Pants to you!

Thanks to Sheila for sending me the link to these inspiring videos featuring artist Nicole Edwards who battles scleroderma:

Singing through an illness



Grumpy pants



Even before I played the video, I KNEW that I would like Nicole. Anyone who could write a song titled "Grumpy Pants" is A-OK with me. Nicole, girl: I have an entire closet full of grumpy pants. We're grumpy pants sisters.

Hey. I could wear my grumpy pants for Halloween....

The World Needs More Chocolate Eyeballs

Yes. This is an eyeball greeting card. It's plastic, liquid filled, and the iris floats around in there. Aren't Papyrus cards the best!? 

After my surgery on Tuesday, I opened my eyes and immediately could tell that my vision was vastly improved.

What an amazing experience. Absolutely astounding. Incredible!

The procedure took all of about fifteen minutes, if even that long. But in that short span of time, I was given the priceless gift of sight.

As they wheeled me into recovery, I felt like a kid in a candy store. And, because Versed makes me blab, I described everything to everyone nearby. As my gurney rolled from the OR into the recovery room, I was pointing and gabbing:

LOOK! I can read the exit sign! Hey!! My eyes match!! The colors are so vivid and pretty! Blah! Blah blah blah blah blah!

I wanted to run out into the street and stop cars driving by to tell people the good news.

DID YOU KNOW THAT CATARACTS CAN BE FIXED?! 

As I was given my post-op instructions, the nurse could hardly suppress her giggles at my exuberant reaction to the whole experience.

Yesterday, my friend Naomi took me to my post op appointment and my blabbing continued with the clinic staff. I gave them gift-wrapped chocolate eyeballs, an eyeball thank you card, and gave and received hugs all around.

It was a party. A post-cataract party. Woo hoo!

Before I left, I told Dr. Young Gal: In all seriousness, I really do want to thank you for your skill in giving me clear vision back. I hope that I never take the ability to see well for granted. Ever.

Which made her tear up a bit. "Julia. This is what I do every day, and it's what I studied for all those years. It's been my privilege to do this for you."

Sniff. More hugs.

As we left the parking lot, it occurred to me that my effusive gratitude was not something that the staff witnessed every day, even though surely they saw patients with more serious vision issues than I had and had treated them with equally good results. Why should a small gift and a silly card be such an unusual thing?

All it took to bring everyone to laughter, tears, and hugs was a four dollar bag of chocolate eyeballs. And a heartfelt thank you. Powerful stuff.

Two New Eyeballs

Well. Another Julia experience is in the books, and I have to say that I have enjoyed the ending. My cataract surgery went swimmingly yesterday. Perfect. Quick and as planned. Thank you everyone for your thoughts and prayers!

I'm sleeping off everything today and dropping my eyes like crazy. Funny how even though I didn't have general anesthesia and certainly don't require prescription pain pills, I still feel tired and more dopey than usual.

Ah, but sleep is good.

So is being able to SEE.

Talk to y'all tomorrow.

Shiver Me Timbers

My goodness. My earlier post today makes me sound downright cranky.

Which I'm not, really.

Besides, how could anyone possibly be crabby on a beautiful morning like this?

Betcha it will look even prettier after we get rid of the other dumb stupid cataract today. So let's batten down the hatches and ready to set sail, me Matey, John! Tonight this old pirate will have scored a brand new eye patch.

I need a parrot.

Round Two

Today is my second cataract surgery, and for the life of me I can't think of anything witty or pithy or informative to say.

I think I need those pre-op meds waaaaaayyyyyyy before pre-op, please.

See y'all tomorrow.

Autoimmune Gal: Discontinuing Medications

Mmmmm......cake...... You can get your very own spectacular cake at Rose's Deli. 

Autoimmune Gal recently put up an excellent post entitled "Changes in Medicine: Not a Piece of Cake". Check it out:

Medicines are a daily fact of life for me, and I know in that I'm not alone.  I'm always looking for a way to reduce the drugs that I do take when possible, since virtually all have some level of side effect or interaction with another of my medications.   However, I have learned the hard way that getting off a medicine can be as difficult as getting used to taking a new one to begin with.  I thought I would share my recent story and a few tips that I've learned to deal with any major medicine adjustment.
[.......]
This is certainly an example where medicine is both art and science, and each patient might need a slightly different approach.  I was more concerned with having the least side effects possible than being off the medication as quickly as possible.  Here's a few of the quick lessons I learned through this process that will hopefully be helpful in the future.

Continue reading here for her seven useful suggestions for tapering your medications.

Take a Look

Since my next cataract surgery is fast approaching, I decided yesterday that I should really spend some time getting ready.

Which meant that I picked up my prescription for eyedrops:

AND got a manicure:

Good grief. I even have wrinkles on my fingers. 

But most importantly, bought eyeball chocolates as treats for the staff....

The surgery staff gets the bloodshot ones. The clinic staff gets the others. 

.....which will be accompanied by this awesome Halloween thank you card.

It says "Here's lookin' at you!" on the inside. 

What? You think I should have cleaned the house and done laundry instead?

Silly persons.

What Happened to Summer?

I about snorted milk out of my nose when I saw the "sell by" date on my milk carton this morning.

In all honesty, snorting various breakfast beverages isn't really an unusual event at my house. I'm easily startled before noon. 

DECEMBER? Really?

Shouldn't it still be August? Where the heck was I during September and most of October?

I'm going back to bed. Wake me up before Halloween.

Correlation Does Not Equate Causation

Now that the government is back on-line, (actually, did anyone notice that it was gone? JK. I'll bet the folks that were furloughed are glad to be back at work) the NIH is putting out links to studies as fast as they can to catch up with their backload. Click on this list of recent studies related to autoimmune disease to dazzle your grey matter for yourself. 

I've been reading them as fast as my old eyeballs can go. But I can't say as my brain is absorbing this information as well as I would like, so I've decided that I need to just step back from this flood of data for a bit and let what I already have read sink in. Kind of.

Because I wouldn't want to draw incorrect conclusions from it all. As would appear to happen in this hysterically funny comic found on PhD Comics and shared by Kelly:

Um. I think I need to clarify for myself the distinction between correlation and causation. Check out this excellent explanation from the Australian Bureau of Statistics.

Unexpected Beauty

Terese asked me to get a few pictures of our church's cemetery, so yesterday I headed over there to take advantage of the sunshine we've been blessed with lately.

I noticed that some of the older monuments were carved with intricate designs. Lovely.

Gain With No Pain

I am suspiciously thinking that the folks over at the Arthritis Foundation have my number. You know, the wah-wah-wah I hate to exercise even though I know it will make me feel better number.

Two minute exercise routines? I don't need to go to the gym? No spandex involved? Demonstrated clearly on video?

No excuses.  Arthritis Foundation exercise videos found here.



You can buy a 60 minute exercise video from the Arthritis Foundation which contains all the exercises demonstrated on their website here.

No One Saw a Thing

Are these two beauties perfect, or what? 

Please tell me that I am not the only one who has resorted to this:

I decided to do a little shopping yesterday, and after breakfast headed out wearing a sweatshirt. After strolling around a few stores and scoring some excellent turkey-shaped salt and pepper shakers for our Thanksgiving bash, I realized that I had probably over-estimated my energy for the morning. I began to sweat profusely and realized that I needed to do a couple of things in order for me to safely drive myself home. First, I needed a place to just sit down. Secondly, I needed a more light-weight shirt than a heavy sweatshirt or I would progress from feeling hot and slimy to being sweaty and stupid. Stupid is not a good frame of mind when one is navigating Portland traffic.

So I wheeled my cart and my fabulous salt and pepper shakers over to the cheapo furniture area and plunked down on an ottoman while I continued to perspire and thought about what to do next.

Hm. I spotted a clearance rack of t-shirts....I could just barely make out the price and sizes from my perch on a leather ottoman.....thank goodness I can see better these days. I reckoned that $4.99 for a plus sized shirt in a not terrible color was a pretty good deal, so after a few minutes I headed to the checkstand via the clearance rack, snagged a shirt, checked out and was back in my car within a few minutes.

I thought perhaps that once outside I would cool off, but the sun had appeared and it felt as though the temps were close to seventy degrees there in the parking lot. I got into my SUV where it must have been at least 90.

I just don't tolerate extremes in temperatures. As I continued to feel hot my sweatshirt soaked with, well....sweat..... and I began to feel nauseous, I decided that the situation required prompt action. After glancing around to make certain that nobody was near my car, I pulled off my sweatshirt and threw on the new t-shirt right there. The windows of our SUV are tinted, but gee whiz. I am sure that anyone walking within 20 feet or so could clearly see this plus sized lady stripping in the front seat.

I prefer to think that no one did. That's my story and I'm sticking to it.

Immediately after I pulled the sweatshirt over my head and was sitting there for just a microsecond in nothing but my bra (Well of course I was also wearing pants and shoes. Honestly, people..) I felt better. Cooler. More like myself.

Ahhhhh.

I dove into the t-shirt with tags still attached which by now felt blissfully cool and comfy. After gulping down half of a bottle of water and resting for a few minutes, my nausea abated and I started the car and headed back home.

I think I need to start wearing layers. Or throwing extra clothing into the car. I have a feeling that if John needed to bail me out of jail for public nakedness I'd never hear the end of it...

It's a Good Thing

John and I headed north to Seattle over the weekend. We had a great dinner with the kids and a leisurely trip back home.

Nice.

We stayed at a hotel that evoked an abundance of good memories. Last year, we stayed there for my son's wedding festivities, and as we walked into the foyer I felt a twinge of nostalgia. I tried to figure out why I suddenly felt this strange mix of emotions: warm fuzzies as I recalled the wedding and celebration that surrounded it, but also wistfulness as I realized that the state of my health was quite different back then. I was riding my first rituximab energy high and thoroughly enjoying the ability to participate in the wedding fun without a major crash and burn.  I remembered bustling in and out of this same grand marble foyer with things to do and people to see, my heels clicking briskly on the polished floor.

Ah, but my entrance into the hotel was much different this time. A year and a half later as I pushed open the huge glass and brass doors, I was exhausted by simply walking the few blocks from the train station. I was glad that John was at my elbow as we made our way up to our room and that a very comfortable bed was waiting so that I could catch a couple hours sleep before meeting son and DIL, and D#2 and SIL for dinner later that evening.

The next day as we said our good-byes and headed back to the train and home, I had a chance to reflect on my feelings about the stark contrast between my two visits to this hotel. I was seriously tempted to allow myself to start down that all too familiar path of dang I wish I could still be on rituximab and even the more familiar and well worn path of I hate this disease and I wish I could just magically be cured. Why me?

As we settled into the generous leather seats and the train began to slowly roll southward, a thought occurred to me: What if ten years from now, my future self will be wishing that I could have THIS day back again? And that things would have changed, and somehow this day-- that I was wasting by pining away for times past -- was the one that I would want to do all over again?

It seems that I need to continually be reminded to live and appreciate in each and every moment. I wouldn't want to look back on this lovely weekend spent with John and the kids and their spouses and only remember that I was feeling sorry for myself. No, I would want to remember that we laughed and hugged and ate and drank together.

And that life was and continues to be very, very good.

Catching Some Zzzzzs.

Sometimes the view from a train is not particularly scenic.

I'm glad that most of the time it is.

Resting up. See y'all tomorrow.

Saturday Smile

Julia + Sjogren's?

Exactly.

The wheels on this bike go round and round..

Lulu thinks that a bike that doesn't go anywhere or bring her treats is a waste of time. 

My friend Bev and I were having a grand old time the other day as we kvetched over coffee.

It's so nice to have friends that have similar wah-wah-wah issues.

It appears that we both have a bum knee (actually Bev has two, but then that's another story for another day) and our doctors are telling us generally the same thing: Your knee hurts because you have common, garden-variety osteoarthritis. Exercise. Lose weight.

We both agreed that the situation would be far more interesting if we could attribute some exotic cause to the swelling and pain. Because we, of course, are exotic and interesting.

You see why I like her?

I had to grudgingly admit Dr. Young Guy's advice regarding my knee was accurate: that regular, gentle exercise will keep my knee limber and reduce the overall pain. I have found that floating around in my community center's pool is the most effective exercise for me, but there's been a big hitch in my swimming giddyup lately in that my post operative instructions for cataract surgery clearly state to stay out of public pools for at least a month after the procedure. Considering that both eyes have cataracts, even with one removed I still have about six weeks remaining before I should take the plunge. So to speak.

So in search of some kind of knee-happy exercise, I went over to the community center last week and grudgingly pedaled away on one of the stationary bikes there. As I was telling myself that this whole experience is painfully boring and that it's impossible to hear anything from the wall mounted televisions and who wants to watch those stupid daytime shows anyway, it occurred to me that I could be just as bored at home pedaling along on my own stationary bike thingie.

I bought it awhile back after my physical therapist recommended a stationary bike as one option for non-weight bearing exercises. I used it regularly for awhile, but after my trochanteric bursitis settled down a bit and I hung up Candy the cane, I stuffed the portable bike into the laundry room and kind of forgot about it.

I think it's time to dust it off and start using it again.

About my bike: I purchased it here, and I chose this one for various reasons:

• It is substantial so doesn't slip around too badly.
• It is quiet and seems to be well-built
• Was not terribly expensive (but not cheap either) at about $145 including shipping.
• Was very easy to assemble.
• Is able to be used while sitting for legs and knees AND
• is able to be used tabletop to exercise arms
• I can wear whatever I darned well please and watch real quality television programs (like Duck Dynasty. Hey. Now that's real entertainment right there, people) or listening to music in the comfort of my own home. 
• Lulu finds it quite entertaining. 

It does have a few drawbacks:

• It is substantial so is a bit heavy and bulky to move around.
• It has a limited amount of resistance, since the focus of this machine is to increase range of motion of joints, not provide sweat like crazy let's pretend I'm riding directly up a mountain type aerobic exercise. 
• Those with longer than average legs may find that the size of the "wheel" made while pedaling may be too small and so the knee may not actually go through it's full range of motion for tall people.
• I receive absolutely no compensation of any kind for mentioning it on my blog. 

It appears that the Arthritis Foundation agrees with my physical therapist about stationary biking. Read this:

Benefits of Stationary Cycling
Be a pedal pusher and strengthen your heart, hips and knees.

What a Prize

Photo taken the year Mom won a pressure cooker. And Dad. 

I was talking to my mom yesterday. I love these kind of conversations:

Mom: "Honestly. I'm so mad I could spit."

What's up, Mom?

"Well, they just don't make things to last any more."

Did something break?

"Yes! My pressure cooker!"

The one that's you've been using ever since I can remember?

"Yes!"

Wait. How old is that thing, anyway, Mom?

"Well. Let's see now.......my sister Betty and I won that in a music contest..."

You DID?

"Sure. I played the accordion and she played the guitar. We won the first round, and came back for the finals. We took second place and won that pressure cooker."

Really? How old were you? What song did you play?

"Oh, I don't remember what we played. Old timey stuff. I guess Betty must have been 14. I was 18."

Um... Mom. That was a long time ago. Lots of people don't last as long as that pressure cooker did. 

"And we thought it was pretty funny later that same year when Dad and I got married, Betty gave me her half of the pressure cooker! Hee hee!"

Let's see now.....that would be.....

"Sixty one years ago."

Sixty one years. And you don't think that's long enough for a pressure cooker to last?

"Well the pot and the top are just fine but I just can't find a rubber gasket that will fit the darned thing so that it seals up right. Presto says they don't make that part anymore. How ridiculous is that? I use that pressure cooker to make just about everything."

I know! Soups, and stews, and you even do a pressure cooker pot roast.

"Hmph. Never thought I'd have to go buy another one of these just because a little rubber ring wore out."

Hm.

"But I'm keeping it. I can't make my home made fudge in any other pot but that one."

You're right, Mom.

(Actually, nobody can make that fudge except her, even with the same pot.)

I wish I were as durable as that old pressure cooker has been. Actually, I wish I were as durable as my 78 year old mother has been.

Six -- count 'em -- six new Sjogren's genes.

Thanks to Laura Strom for alerting me to this story which may have enormous implications for those dealing with Sjogren's syndrome:

International coalition of researchers finds six new Sjögren’s syndrome genes

OKLAHOMA CITY, Oct. 6, 2013 — With the completion of the first genome-wide association study for Sjögren’s syndrome, an international coalition of researchers led by scientists at the Oklahoma Medical Research Foundation has identified six new disease-related genes.
Their work appears in the journal Nature Genetics.

This research required Sjögren’s researchers from around the world putting together about 2,000 patient samples, which were tested against more than 7,000 healthy controls.
The results were exactly what the researchers were hoping to see. In addition to the previously known HLA gene related to the disease, the group was able to identify six new Sjögren’s genes and begin working to understand their functions. (Bolding mine.) Continue reading here.

OMRF (omrf.org) is an independent, nonprofit biomedical research institute dedicated to understanding and developing more effective treatments for human diseases. Its scientists focus on such critical research areas as cancer, Sjögren’s syndrome, lupus and cardiovascular disease.

Consolation

All of us deal with the difficulties of our disease in different ways: some of us look for comfort in the company of family and friends, some need silence and isolation in order to muscle their way through a flare. TV, good books and good music are invaluable to others. Many of us look to our creator as a source of strength.

Me? I need all of the above in one fashion or another. One group of friends in particular that have always, but always been at my side regardless of circumstances are my furry friends.

Lulu's favorite spot these days, especially if I'm lying on the couch. She leans over and gives me puppy kisses when she feels like it. Ahhhhh.....

It seems as though Lulu instinctively knows when I need a warm fuzzy puppy on my lap or curled up next to me in bed, and it's hard to put into words the comfort that brings me. She loves me unconditionally and is always happy to be with me no matter how crabby I am. She's good -- some would say the best -- medicine that I have. And she's there for me every single minute of every day.

One of Reasonably Well's long-time readers and my friend, Mary, has just bid her kitty Casey good-bye after sixteen wonderful years of companionship. Although she is grateful for the many years she had with him and nursed him through hospice care into heaven, one of her precious sources of comfort has left her.

Let's spend some time today sending warm, consoling thoughts in Mary's direction.

Where do you find comfort in difficult times?

"Her Diamonds" speaks to autoimmune disease.

 The link to this moving video was sent to me by Robin:

I just discovered that the Rob Thomas song, " Her Diamonds", is based on his wife's struggle with autoimmune disease.  It is an amazing song and an awesome video.  I wonder if anyone else knew about this, the song is a few years old.  It really captures the frustration of both the wife and husband as they deal with the pain, fatigue and other issues of autoimmune. The opening verse starts with:

 

"Oh what the hell she says 

I just can't win for losing 

And she lays back down."      

I've always liked his music and now I have yet another reason  - He seems to really get it.

Wow. Powerful stuff. Thanks for sending it along, Robin.

 You can read more about the meaning behind Thomas' lyrics here.

 

Sunday Smile

.....featuring none other than our own Lulu, who couldn't care less about my computer unless it's showing videos of wild and crazy schnauzers.

Here's one of her fave videos. Enjoy.

I Love a Good Mystery

 A couple nights ago, Terese and I went to a book reading/signing by our new favorite author, Laurie R. King. We are currently reading our way through her Mary Russell and Sherlock Holmes series but took the opportunity to see her as she was on a book tour promoting her new book, The Bones of Paris. What fun. Ms. King was a delightful speaker.

Of course I snagged a copy while we were there, and I can't wait to dig in.

I have had to devise an......unusual.....method for optimizing my glasses for reading these days, and so will be reading my new book through several layers of optics: first, my one-real-lens/one-fake-lens glasses, covered by the second, my brand new Dollar Tree reading glasses. AND if it's sunny -- a third, my non-prescription clip on sunglasses. Of course Terese had to document this amazing optical engineering feat:

How attractive. Yeah. MmmmHmmmm. I especially like all the layers of funky shadows this creates on my already chubby cheeks. (Three more weeks, Julia.....just three more weeks until you can ditch them all...my next surgery can't get here soon enough.)

If you want to read more about the amazing amount of research Ms. King completed before writing her book, check out her Pinterest page for The Bones of Paris; and this interactive map of Paris in 1929.

Have you read it?

Conquering the Chills

Doesn't my new eyeball look GREAT? Yes, I know it's just a new lens but it feels all brand new. (You don't see crows-feet and grey hairs, do you? No, you don't. Repeat after me: No I Don't....)

As I was getting ready for bed last night, John said, "So, what's with the sweatshirt, Babe?"

I have been wearing a hooded sweatshirt over my jammies for the past few weeks. After I'm all tucked into beddy-bye, I pull the hood up over my head, wiggle my hands down under the covers and stick my hands into the front pocket.

Serious snoring follows shortly.

I've been having more of those "I feel like I have a temperature but I don't" chills in the evenings lately, and popping a Tylenol and putting on my fave hoodie seems to help quite a bit.

It HAS to be this grey one. 

You know how this feels, don't you? Like I'm coming down with something -- my skin is all goose-bumpy and I feel chilled and achey. Early on in my disease process, these episodes freaked me out considerably. But then, just about everything about Sjogren's freaked me out at first.

Now, I just chalk it up to my disease being what it is: an immune system on overdrive that's acting like I have an infection when I don't. I suspect that the increased frequency of these kind of spells is related to the fact that we're trying to taper my prednisone again. I have been extremely motivated to reduce my prednisone ever since I developed prednisone-induced cataracts. We will see how that goes.

I know that y'all just can't wait to imitate my newest bedtime fashion, so here's a few tips to recreate this sensational ensemble for yourself:

• A heather grey sweatshirt from one of your children's colleges' bookstores which was hideously overpriced but says "(Name Your College) Mom" on it is ideal. Preferably if it's been wadded up and tossed on the top shelf of your closet for at least five years. 
• NO ZIPPERS. It simply must be a pull-over-your-head style hoodie. Aside from the fashion statement that we are trying to create here, ow. Not comfy. 
• I personally prefer the heather/pink sweatshirt-jammies combo, but feel free to experiment with whatever color coordinates you choose. 
• Before nodding off, be sure to remove the cell phone from the front pocket (which is where you stuck it while brushing your teeth and dropping your eyes), or you'll be scrambling in the morning to figure out what the heck you did with it.
• And finally, one word: SOCKS. A must-have accessory. I enjoy SmartWool brand myself, but here's a cautionary note: avoid those fluffy sock-slipper thingies since most of them have sticky spots on the soles to keep you from falling on your tushie. This works well if one is actually up and walking around but once in bed they stick to the sheets and are ridiculously cumbersome which ruins the entire zen snuggly experience. 

Wield this awesome bedtime beauty with caution, people. With power comes great responsibility.

A monocle wouldn't work for me, either.

See? Much less stupid looking. 

I just have to share a conversation with y'all that occurred a couple of days ago. It has to do with my cataract surgery, and I'm certain that everyone that knows me even a smidgen is SICK AND TIRED of my cataract/surgery/eyeball stories. But I just can't help myself, so here goes.

I was wandering around Wal-Mart because I was bored and it's close by and I needed to pick up some Cheetos for my friend Naomi (but that's another story. Ooo. And a non-eyeball related one too..) when I pushed my shopping cart which now contained a small bag of Cheetos but also a pair of jeans, two boxes of cereal, some bananas, and a pair of clearance earrings past the optical department.

I've been futzing around with my glasses ever since my surgery. My doctor told me to pop out the glasses lens of the surgical eye because now my vision in that eye is 20/20. But since I require a very significant correction in my other eye I need to continue to use my left lens, which left my glasses looking totally stupid on my face, one whole lens being missing and all.

Hey -- don't say it. I know what you're thinking. Just don't go there.

Anyway, I already had noticed a few other shoppers doing a double-take when they saw my dopey one-eyed glasses and wondered to myself if there was some way to put a blank lens in there, just to align the wire frame better and to diminish the bizarre factor a bit. So I wheeled my shopping cart (which now ALSO had a pack of sugar free gum, some shampoo, and a clearance set of sunglasses) up to a friendly-looking young lady in a white lab jacket sporting a Wal-Mart Optical name tag.

"Can I help you?"

I hope so. I was wondering what patients do with their eyeglasses in the midst of cataract surgeries, assuming they need both eyes fixed.

"Um." She looked a bit confused.

Well, so take a look at these dumb stupid looking glasses.

She did.

Notice that they're missing one complete lens?

She did.

Don't you think that looks pretty weirdo?

She laughed. "Well, I think you may be a bit overly self conscious about that...I don't know if most folks would notice right away. Lots of patients can just go completely without glasses even though they have only had one eye done."

Well, I can't go without my glasses yet. Not until after my left eye surgery is done. 

I shoved the frame in front of her face. Just look through these babies!

She did. "Yeah, that's a pretty strong prescription, all right."

So what do I do? Isn't there a clear demo lens laying around from all of your sample frames that you could just pop in there?

She thought about that. "I don't think that I can do that. Our demo lenses all have writing all over them. I could order a new lens for you that has no correction but it would cost you plenty. When my mom had cataract surgery, she asked me the same thing but I just made her pop out the one side of her glasses and that's what she did for about a month. SHE didn't complain about it."

You did? That's terrible! I gave her my best one-eyed-indignant-Mom stare.

Awkward pause. She looked a bit ashamed. "Give me your glasses."

I did.

What are you going to do with them?

"Just wait here. I have an idea."

She disappeared into a workroom, I heard a strange grinding noise, and moments later, she reappeared with my glasses -- with TWO LENSES in them -- dangling from her fingers.

"Be careful. I couldn't get it to fit exactly right."

I could have hugged her. What did you do?

"I found this display thing. It was way too big for your frames so I used the grinder to make it about the shape and size of your old lens. I think it looks better now."

You are a doll! How much do I owe you?

"Oh, nothing. Nothing at all."

But I didn't buy these frames here!

"That's OK. Come back and get your next ones here."

I thanked her profusely.

She grinned and said, "You're welcome."

As I turned and began to roll my cart out of the department, I heard her giggle.

What?

"I think I need to call and apologize to my mom!"

THAT's my girl!

What a peach.

A facebook page for men with Sjogren's syndrome

Thanks to JoAnn for passing along this link to a facebook page for MEN who have Sjogren's syndrome. It is a closed group meaning that before you can follow this page, you need to click the "join group" button up on the top right side of the page.  You can find this facebook page here.

Here's a few excerpts from the page:


 I am your group founder and administrator. My name is Bill Simpson. As I am from the Buffalo NY area and as a diehard Bills fan... my friends all call me "Buffalo Bill"

This is a group dedicated to men who suffer from Sjogren's Syndrome. 

It is open to men only. We are open to all men who suffer from this disease, no matter your race, religion, nationality, sexual inclinations, or political ideals.

.........Everything from diet, cooking and recipes, exercise, medications, music, books or whatever

And if the discussions go towards boxing, football or other sports... well... that's ok too.

We are here to exhort and encourage each other, and to exchange and share information related to this disease.

We shall fellowship as gentlemen.

As we are male Sjogren's Syndrome Sufferers... we are a bit of a rarity. 

We are all affected by Sjogren's and the various symptoms such as dry mouth and mouth sores, dry eyes, arthritis, chronic fatigue, and brain fog.

It affects us in our family lives with our spouses and children. It affects us in the workplace.

Although the majority of Sjs patients are women - the Sjogren's Syndrome Foundation site states a nine to one ratio - there ARE males with this disease as well. I'm glad that Bill has taken the initiative to gather support for gentlemen sjoggies.

Thank You, Elaine Harris

The Sjogren's Syndrome Foundation is celebrating it's 30th anniversary this year, and the latest Moisture Seeker newsletter is dedicated to this milestone including a two-page timeline of Foundation accomplishments, a historical perspective about Henrik Sjogren, and my favorite: excerpts from a 2008 interview with SSF founder, Elaine K. Harris. Here's a sampling:

Q: What's the best advice that you ever received as a Sjogren's patient?

A:  Way back in 1982 when my doctor told me that there was nothing he could do for me, that I just had to "learn how to live with it," I ran out of his office crying. In order to learn how to live with Sjogren's I had to become an informed patient. It wasn't easy because there was no SSF, or even a local support group, no newsletter, no Sjogren's Syndrome Handbook. It was the absence of these resources that provided the stimulus to develop such resources, leading to my forming a local Long Island support group which evolved into the SSF.

And evolve it did. This from the newsletter section titled Breakthrough Bullet:

When the Sjogren's Syndrome Foundation was first started by Elaine Harris, board meetings were held in her living room and a cup for donations was passed around at meetings to raise funds for the office supplies such as stationary and postage. While the Foundation has always been a patient focused organization, it has grown from a "Mom & Pop" operation that was started 30 years ago to an internationally recognized organization shaping the industry in terms of research, education, patient care, advocacy, and new therapies.

Countless sjoggies have been directly impacted by the results of Ms. Harris' initiative and hard work. I know that I certainly have. How about you?