Of Conferences and Books

A few days ago, I posted information about the upcoming National Patient Conference by the Sjogren's Syndrome Foundation. It prompted a comment from a reader who wondered if the cost of the conference -- $170 -- was worth the expense.

I have only been able to attend one of these conferences, but I have to say it was worth every penny, at least for me. At the time, I only had my diagnosis for about a year or so, and I was in the state that most of us experience early on: I was angry, feeling isolated, tired, and wanting to know a great deal more about this disease. I didn't know anyone with Sjogren's syndrome, and it seemed that my family practice doctor wasn't all that familiar with it either.

The conference proved to be very helpful. I learned a great deal, the topics were very relevant, the speakers very knowledgeable and experienced in caring for Sjogren's patients, but I have to say that the feeling of community that I found there was the best thing of all. It was absolutely wonderful to look out at the sea of attendees and know that all of us had so much in common. And the fact that the conference lasted two days and included time for socialization gave us all ample opportunities to get to know each other.

This year's conference promises once again to provide excellent information and meet and greet opportunities. In addition, fellow Sjogren's syndrome blogger Christine Molloy will be attending AND will be signing copies of her recently published book "Tales From The Dry Side". Her latest blog post lists several sources for buyers of the  book.

Here's what Steven Taylor, CEO, Sjögren’s Syndrome Foundation has to say about Christine's book:

"Books like this are a wonderful opportunity to have the Sjögren’s story come to life. Each patient’s journey is unique, yet still has similar plot lines that include a long diagnosis time, a huge learning cure, introductions to numerous new healthcare specialists and the myriad of confused looks from family and friends when they tell them that they were diagnosed with Sjögren’s.
I am humbled by those patients that are willing to tell their story. Women and men who are willing to stand up, share their struggles and their triumphs as they manage this common, yet unknown and confusing disease.”

Having just finished reading my copy of the book, I would agree with Mr. Taylor. The book presents several candid life stories shared by Sjogren's patients with the intent to increase awareness and educate patients and families about this disease. Check it out.

You can read more from Ms. Molloy on her blog, Thoughts and Ramblings on Life, Love, and Health. Christine is also featured in the January 2014 SSF newsletter in the "I Stood Up" section.

Flying Squirrel

John and I have been doggy-sitting for a few weeks. My son and his wife and a whole pack of their college buddies were off on a ski trip; so we inherited Frodo for a bit. He's such a sweet dog. But he's also a very energetic boy. I think I've definitely developed some serious toy-throwing muscles in my arms because Frodo's need to fetch something -- anything -- is insatiable.

I think I could throw Lulu and he'd haul her back to me.

I've gotten so that I don't even think about throwing Frodo's toys for him all. day. long. It's just a reflex thing: if I'm stationary in any position whatsoever, I will either have a slobbery dog toy in my hand or in my lap ready to be thrown.

So.

Yesterday, I poured some bath salts into my bathtub and filled it up. Ahhhh. The house was quiet. I had some music playing. I leaned back and closed my eyes in total relaxation.

Then.

*Splash* THIS came flying into the bathtub.

It is not conducive to a zen frame of mind to have a soggy plush rodent hurled at one's head. I sat up. "Hey! Which one of you woogies just threw a toy into my bathtub?!" I had my suspicions but couldn't resist asking.

Lulu said, Are you kidding me? I haven't left this bed.

Aha. Which left only this suspect who looked at me surprised that I hadn't thrown it back to him.

What an innocent looking face. Pfffft.

Until Frodo leaves, think I'll have to close the bathroom door for my soakings.

Party On, Mom

Did I tell y'all that Terese and Greg's daughter is planning a wedding for this summer?

Woo hoo! Exciting times. It's great fun to be on the periphery of all the wedding planning. I'm also having way too much fun planning her wedding shower.

Planning parties is one of my most favorite things ever. Turns out, my friend Naomi loves this as much -- or even more -- than I do, so I've asked her to help with the fiesta themed shower. We're having a ball. It seems that this event's guest list is delightfully long, at this point we're thinking around 60 plus attendees, which will make for an excellent sized fiesta.

A couple of days ago, I was talking to my mom about the shower, and asking for advice about planning for a gathering of that size since Mom and her buddies organize and execute enormous church and social events without batting an eyelash. We had a great time reminiscing about some of her most memorable parties. Ahh. Such good memories.

Yesterday, I received a large manilla envelope in the mail addressed to me in Mom's distinctively beautiful handwriting. Inside was a large stack of ideas for wedding shower games that she had collected over the years. The first item in the stack? This. Which was one of the games that we played at one of my wedding showers THIRTY FOUR years ago.

Mom. You've saved all this stuff? You rock, girl.

Sjogren's Syndrome Foundation 2014 National Patient Conference

Image found on Wikimedia

The most recent edition of The Moisture Seekers, the SSF newsletter, contained information about their annual National Patient Conference. It appears to have the potential to be excellent, as previous ones have been. I thoroughly enjoyed attending one several years ago. Here's the information. You may want to consider going.

2014 SSF National Patient Conference

"Solving the Sjogren's Puzzle"

April 25-26, 2014

Hyatt Regency O'Hare

Chicago (Rosemont, Illinois)

Presentation topics will include:

Overview of Sjogren's Syndrome 

Pulmonary Issues and Sjogren's

Dry Eye/Dry Mouth and Sjogren's

What is in the Clinical Trial Pipeline?

Gastrointestinal Issue Sjogren's

Clinical Practice Guidelines Overview

Nutrition, Wellness and Autoimmune Disease

Overlapping Major Connective Tissue Diseases

For more information and/or to register, call 800-475-6473 or visit www.sjogrens.org

Progress

Awesome truck photo found on Shorpy, here. 

I want to thank everyone for their extremely kind words, thoughts, and prayers in response to my dumb stupid fall last week. You guys are seriously wonderful. And I'm not kidding here.

All those positive vibes must be the reason that I've healed up so quickly and with amazingly minimal amounts of purple on my body. Except for my ankle which did bruise quite a bit; but since I can cover it up with a sock, who cares?

Ahhh. It is a really good thing to feel as though I haven't been run over by a truck.

I think aside from all of your good thoughts, my continuing to visit the community center pool since I toppled over may have helped with the healing process as well. Even though I don't do everything that the aqua yoga instructor encourages us to do during class, still I keep my body in motion, and on Friday hopped into the spa after class for a good soak.

Well, maybe not hopped. Wobbled. But I got there.

So how is everyone today? Are y'all feeling as though you have NOT been run over by a truck as well?

I sincerely hope so.

Sjogren's Style: Spectacular Spectacles

This post from Sjogren's Style may have just solved my most recent lazybutt problem.

After my final eye exam following my cataract surgeries, my surgeon gave me a paper copy of a prescription for new glasses. Technically I don't need  prescription glasses for driving but my vision is not completely 20/20, and I definitely need to use reading glasses. So I stuffed the prescription into my wallet and there it has stayed for what seems like forever.

The thing is, I just hate choosing new glasses. Granted, this go-around will involve lenses that are considerably thinner than my previous coke-bottle-bottom ones, and I will not be wearing them continuously, so actually the task should be easier than ever before. I need to just go buy the stupid things. But I just don't want to do it.

In the meantime, I have been buying cheapo reading glasses and leaving them scattered around the house and car and everywhere I go.

Well. Who knew that you could order glasses online? Sjogren's Style's excellent post provides links and reviews of her purchases of several pair of glasses.

Cool. Online shopping. I adore online shopping.

Here's a snippet of her post but head over to her blog to read the entire article:

.....And here's what I've learned: 

• Pay close attention to the measurements. After all of my Warby Parker try-ons, I realized that a lot of glasses that look nice on the models are HUGE on me. The other web sites offer more detailed information (like lens height), so I was able to make a decent guess about what they'd look like. 

• The option to upload a picture of yourself is fun, but was kind of useless on most of the sites. They just don't size the glasses very well, so none of them looked like they did in the pictures in real life. 

• As you'd expect, the "free" options on these sites aren't always free. There are a lot of add-ons that are pretty important (esp. anti-glare/anti-reflective coating), but it's all still reasonably inexpensive. 

Spoke-tacular

I'm thinking that today would be a good day to simply breathe, renew, and heal.

And avoid falling on my face again.

To facilitate a zen frame of mind, this strangely soothing yet intriguing music created from a bicycle -- yes, a bicycle -- may be just the soundtrack that I need; given the caveat that I will not be listening to it while actually on a bicycle, which would only invite further opportunities to smash up this old body yet again.

Enjoy.



Found on the awesome website Explore.

Head Over Heels

Why can't I be all cute like Calvin and Hobbs are when THEY fall? 

I still have periodic bouts of vertigo these days. Thankfully these spells are becoming less frequent. But I have to admit that the one that struck yesterday just as I was leaving the house which sent me tumbling down three steps onto the concrete garage floor was particularly inconvenient.

Ow.

Would somebody please explain to me why, when I landed face down on the garage floor, that the biggest bruises are on the FRONT of my hands and on the side of my left ankle? I'm not complaining that my face was completely unscathed, but it just doesn't seem to make sense. And I'd really rather not attempt to recreate the event in order to unravel the mystery.

I'd also like to point out that Candy the cane was no help whatsoever. As a matter of fact, she went skittering halfway across the garage. I suppose I'm lucky that I didn't land on her.

I think the worst part of a fall is that second in which I have the sickening realization that I'm falling --but haven't hit the ground yet -- and I'm thinking, Dang. This is going to hurt.

Pass me the ibuprofen, wouldja?

Ornaments and Disco

I'm making progress. 

My Christmas tree has really been bugging me lately.

It's been sitting quietly in my living room, all decorated, lights twinkling. It's surrounded by piles of empty boxes all marked in red marker with the word, "Christmas".

I feel as though it's silently reprimanding me for allowing it to remain decorated and upright even though February is right around the corner. Every morning, I come downstairs I look at it and resolve that I WILL begin un-decorating the thing, even if I only take a handful of ornaments off the branches.

Then I round the corner to the kitchen, have my breakfast, and forget all about the darned thing.

Ah, but today was the day. Quit nagging, already! I told the plastic conifer after breakfast, and after draining my coffee cup began plucking off ornaments. It didn't take long before I realized that some serious motivation was in order. Some kind of diversion that would take my mind off the fact that after only a couple of fistfuls of ornaments, I was already perspiring. So I turned on my secret energy-inducing tool.

Are you ready for this? I almost hate to share my secret since it's pretty lame.....

I turn on disco music.

I know. I know. It's not really music. Actually it's a hideous endless stream of thunk-thunka-thunka. But don't judge me here, people. Because even though I am thinking how mindless and stupid the music is, the rest of me starts moving. It's beyond my control.

So with the Commadores blasting, I got every single ornament packed away while reminiscing about the first time I heard the song Brick House. I was out dancing while in college, and my date pulled me out onto the dance floor as the song began saying, Hey baby. This song is all about YOU.

I slugged him, left him slack jawed wondering what he said that was so horrible, marched my platform heels (which were fabulous, by the way) across the disco and got a ride home from my girlfriends.

Brick house, indeed. Tsk.

All Kinds of Awesome

 Can you find Nixie in this photo with the other team members? 

Do y'all remember our creativity challenge last summer here on Reasonably Well? We had several amazing entries, but the winner was Amy and son Cole, who created a fabulous water sprite named Super Hydrating Nixie. You can refresh your memory of this fun exercise here and here.

It appears that our Nixie has been a busy girl. I received this amazing email from a SSF member Heidi recently:

I just wanted to share this...our mascot Nixie was able to participate with  Team Sjogrens in the Disney 1/2 marathon! Thanks to you and Amy for giving us Nixie!

Heidi attached several pictures, the one above being the Team Sjogren's Half Marathon team. I responded to her mail by asking permission to use her name and the pictures in an upcoming post, which she enthusiastically approved. I also asked her to share her thoughts about participating in this event. Here's what she had to say:

I looked at this event as not only an opportunity to raise funds and awareness for Sjogrens and research, but also to prove to myself that I could do this! What is amazing is that even in my pre-Sjogrens state would I have ever attempted to or think I could do this! Early in the race I was so afraid I would not be able to finish. But I did! And I was so impressed to see other Sjoggies participate and do so well- we CAN do normal and extraordinary things!  We should not give up!
[........]
I would encourage any Sjoggie who is ambulatory to support their local walkabouts and even consider the 1/2 marathon. It was definitely a positive affirmation that I still have what it takes to contribute and function in spite of my added super power, which btw I think helped me avoid catching the flu from my husband this past week!
Take care and thanks again for keeping us connected, informed, and inspired through the blog!
Heidi

Check out these great pictures of Heidi, Nixie, and other team members:

This one is my favorite:

Congratulations to Heidi, the whole Team Sjogren's and to our very own Nixie. Thank you Heidi for your hard work and your inspiration to us all!

Demolition Grocery Store Scooters

Can you imagine what would have happened if this little incident had taken out the produce section? Shudder. Image found here. 

Once again. I have learned. NEVER to break my arm patting myself on the back.

Sigh.

Julia: Pride goeth before a fall. Pride goeth before a fall. Pride goeth before a fall......

I was swaggering around yesterday all puffed up with pride simply because I did not do something stupid at the Cathedral on Sunday. And, of course, as it so often does, the universe intervened to set me back on my humble heels.

My comeuppance arrived as I was zipping around a local department store on one of their in-store scooters. I was enjoying myself enormously because the scooter that I had chosen seemed to be much faster than others that I had used before. So I ripped through the produce aisle, tossed a package of baby carrots into my cart as I made the turn, then motored through the bakery section. I swear I was going so fast that I could feel the wind in my hair.

As I was heading over to check out the purses in the accessory department (yeah, this store has everything) I hit the brakes in front of a large end cap display of reading glasses since I seem to lose those things as fast as I can buy them. I maneuvered the cart back and forth trying to get close to various styles of glasses and was getting impatient because I just couldn't get the darned cart close enough to that one stinkin' pair just out of reach.

My mistake was gunning the thing in reverse.

You can imagine what a display holding about one hundred neatly organized glasses looks like lying completely on it's side...and the racket that was created as it crashed to the ground.

Oh, brother.

As luck would have it, a very very nice gentleman was standing directly around the corner from the disaster and while trying really hard not to laugh, heaved the display back to vertical. What's really amazing is that the majority of the glasses stayed firmly attached to their little hooks, and store security officers didn't arrive to confiscate their scooter and escort me out of the store. I thanked the man profusely, helped scoop up and rehang the glasses that hit the floor, and then put putted sedately (and with a very red face) directly to the checkouts.

I wonder if there's a bunch of stock boys from that store gathered around a security monitor guffawing over the video footage of this chubby old lady taking out a display shelf with a scooter?

I expect a motorized shopping cart speeding ticket will arrive in my mailbox shortly. Perhaps I should shop elsewhere just for a little while.....

A Small Miracle

I just love this place. 

Guys. Are you ready for this? Are you sitting down?

Well, I can scarcely believe it, but I was given an opportunity to embarrass myself exponentially yesterday, and I DIDN'T.

Can you believe it?

Why should I be surprised about this, you ask? You may recall the walking-out-of-my-slip incident at a fancy schmancy event; and the time I....well, let's just say that mostly when I'm placed in a position to goof something up royally, I usually do. Just as Terese about my handbell maneuver.

On Sunday, we went to Mass at my son's parish, which is the St. James Cathedral in Seattle. It's a beautiful church. He and his lovely bride were married there.

Sigh. What a wonderful day.

So we were sitting quietly in our pew before the service began when a smiling woman tapped John on the shoulder, and asked if our family would carry the bread and wine up to the altar in a procession during Mass called the Offertory.

Um. Which would mean I would have to carry something down a very long marble aisle, and walk, and not drop anything or fall over in front of everyone. In THE CATHEDRAL.

Gulp. I have to walk all the way up there? 

I was thinking of a tactful way to refuse but John just nodded and told her we'd be honored. She gave us a few instructions and the Mass began. Hoo boy.

When the time came, John took my elbow and we walked to the back of the church. I was thinking that I'd just hang around behind John and Son, and so hopefully I'd just tag along after them and not have to be responsible for conveying anything.

The nice lady appeared again and pointed directly at me. You. Stand here first in line.

Yikes.

And then there were sweet little altar girls and boys and candles in front of me, John and JT behind me, and we were told to start walking.

So I did.

I didn't trip. I didn't lost any articles of clothing. I didn't drop the basket I was given to hold. I just walked up to the priest, smiled, and handed the thing over with an enormous sigh of relief. AND I made it back to the pew relatively unscathed.

Just goes to prove that miracles are still happening these days.

The Wheels on Goldie Go Round and Round...

By the time y'all read this John and I will be barreling down I5 coming back home from Seattle. We threw Lulu into Goldie and headed out to visit the kids.

So if you see a gold Prius with me, John and Lulu in it, wave HI!

See you tomorrow.

Pool Wildlife

Otter found on Wikimedia 

I was cautiously bobbing around in the Community Center pool yesterday. I'm pretty careful about the mechanics of my floating and bobbing because of my dumb stupid vertigo.

So I had found a little niche in a quiet part of the pool, water noodle under my armpits and looped around my back, and was slooowwwwwllllyyy stretching out my leg and arm muscles. Probably less than gracefully. I had just realized that I was able to lean back and float on my back without going all dizzy, when a goggled and swimming-capped kid popped up from the water just a foot or two from my face. Whoa.

"What are you DOING?" he asked.

I thought, Kid. I have no clue what I'm doing. I figured he couldn't have been more than four or five years old. What a cutie pie. He looked expectantly at me with the clear plastic straps of his goggles flapping.

After studying him for a few seconds I said, Are you an otter? since I had no intention of explaining my weirdo gyrations.

Without missing a beat, he chirped "No. I'm a dolphin!" and disappeared under the water again.

I have no idea where he went. This child was really good at swimming underwater.

As I was getting ready to leave the pool, dolphin kid was chattering away to his dad directly in my path to the pool steps. As I passed the pair, I said, Otter! in a stage whisper. I climbed the stairs grinning as I heard him giggling.

I can't wait to have grandkids.

Something is Missing

Image found on Wikimedia

I've been looking back and re-reading several posts from years past, and I have to say that over the last few months, well....hm. It's evident that while I continue to be enthusiastic and dedicated to Reasonably Well, I just don't feel the presence of that quirky spark so characteristic in my earlier posts. Since my daily blurbs are an honest examination of my daily experiences, I can only deduce that my life isn't particularly quirky or ...... sparky ...... these days.

And I would guess that would be an accurate assessment of the state of things around here.

I"m not complaining, here, really. Because an absence of quirk or spark is actually OK. When my energy is low, I don't DO quirky and goodness knows creating a spark just takes too much energy. And there's no faking quirk or spark. Fake quirk simply makes me cranky.

One could describe the state of affairs as mundane or boring, I suppose, but I think calm and restful are equally accurate terms. I can live with calm and restful for awhile.

I wonder what BICJ is up to these days? Uh oh.

I'll Take It

Guys. Guess what?

I had a good day yesterday. A good day. Not great, not pre-Sjogren's, but good meaning that I could shower, have lunch with a friend, and take Lulu to the groomers.

Huh. Amazing, yes?

In all honesty, ever since the holidays I've been making a mostly futile attempt to regain my energy footing which hasn't gone well. It's been a long, grinding month which in retrospect, seems foggy and hard to recollect exactly what happened. Even though I enjoyed Christmas (at least as far as I recall..) and I am glad that I was able to spend quality time celebrating with cherished family and friends, it was grueling. Every night over the past thirty days or more, John would come home from work and immediately ask how my day was and I'd have to tell him the truth because he knows me better than I do. He was sympathetic and supportive, but I have felt guilty and crabby every time that he's suggested going out to do things and I have to honestly say, "I can't. I just can't today."

So it's gratifying to have one   good  day.

So good, in fact, that today I'm tuckered out, but that's OK. One good day means that in all probability there are more good days ahead.

And that makes me very, very happy. Time to rest up for the next good day, whenever that will be.

Autoimmune Gal: Flu Shot and Flare?

Image found here. 

Autoimmune Gal has written another excellent post. In this one, entitled Is the Flare Finished? and dated 1/14/14, The Gal discusses her onset of a flare in relation to receiving the flu shot:

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease. (Bolding mine)

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain...... Continue reading here. 

 Have you had the flu shot? Have you experienced an increase in autoimmune activity following it's administration?

You can read more about immunizations and autoimmune/rheumatic disease here and here.

Let The Splashing Resume

I keep a tote bag filled with my aqua yoga stuff in my closet. Every morning as I'm getting dressed, I look at that bag and think I really need to get back over to the pool. And every morning for the past couple months I have come up with a really good reason to leave that bag sitting right there.

Most of those reasons have been valid ones. Like this one: I can't go into a public swimming pool after cataract surgery. And: Float around in a pool? Yikes. I already feel like I'm floaty with my inner ear stuff. They would probably frown on me barfing in the pool.

Then there was plenty of not-so-good excuses, most of which boiled down to the fact that I just didn't want to. I was too tired. Or that I was not in the mood. Or..... You get the idea.

But yesterday, I decided that it was time to get back into the water. Even though I'm still wobbling around with dumb stupid BPPV, it just seemed incredibly wasteful to be paying for membership in the community center if I'm not going to use it. So I determined that I would go back, even if one trip back proved that I just couldn't swim without setting my vertigo off. In which case I would just stop at the desk and cancel my membership.

I grabbed the bag and headed out in Goldie.

After class, I realized that I had learned a few things, the most important being that I was capable of getting into the pool, that I could tolerate very easy exercises, and that, boy howdy. The water felt really good. I missed it.

I also learned a couple of other things: I was unable to lie on my back and float. Yikes. Not a good idea. Secondly, choosing a locker that required me to look up to lock and unlock my combination lock was also not a good idea.

After changing out of my soggy swim suit, I walked right past the membership desk.

I think I'll stay.

Party Till You're Pooped

Awesome bonfire picture found here, on wikimedia. I forgot my camera yesterday...

There's a party a minute around here. Yesterday's event was located at a friend's house waaaaaay out in the country. It's a gathering with a reoccurring theme: The Burn, Spit, and Shoot party.  The events include a bonfire, target practice, and spitting....just because one could spit if one wanted to. You never know when a person would feel like spitting.

I just go for the food.

Fun times. But I'm all tuckered out.

See y'all tomorrow.

Are You Kidding Me, Walgreens??

THIS has got to be the most stupid ad ever: 10 Reasons Being Sick is Sort of the Best on Buzzfeed sponsored by Walgreens.  I was going to list all ten reasons but looking at them all just made me cranky, so here's number one:

1. You can’t go to work / school

Hey, Walgreens. Do you know how much time I ALREADY spend in bed? And that I would give my eyeteeth to be able to go to work/school?!

I've spent the last ten years being sick. And it is definitely NOT the best.

Grrr.

Candy the Cane: A Pain That Takes Away Pain

Well, she's back. My friend, Candy the cane. You can read more about this diva fussbudget but essential accessory by clicking this and this. One of the reasons that she's been taken out of retirement (tucked away behind all of my scarves in my closet) is my trochanteric bursitis.

Another is that Candy really stabilizes me when I'm wobbling around as a result of my BPPV, the symptoms of which come and go.

I wish it would just get it over with and GO. Dumb stupid BPPV and bursitis.

Ah, well.

I also wish that I had dug Candy out from behind that junk stack of finery sooner, because it really is an amazing thing to be able to walk around with significantly less pain AND unsteadiness. I have to admit that my pride kept me from rummaging around in that disastrous corner of my closet.

But I know that with a couple weeks of regular use, meaning even around the house, Candy will be a temporary companion. But don't tell HER that.

You know how she is.

My Green Eyed Guy

See that? It's my guitar. Notice how shiny and new and um.....unused it looks? Yeah. Well, there's a reason for that.

John loves to play his guitar. He's a bit rusty, at least he says he is, but his fingers are so nimble on those frets. He's had this acoustic Fender longer than he has had me. We were dating when he pulled out his guitar and played "Brown Eyed Girl" for me. I was hopelessly hooked. Smart man.

So last night, we decided to hang out in the Bearded Dog pub upstairs and plunk away on our guitars. It didn't take John long before he was strumming away. But I could not for the life of me remember how to play even one chord.

I suppose I should be truthful here and say that my skills on said guitar have never ever been good. But whatever teensy bit of ability I had is totally gone. John patiently placed my fingers in the correct cord progressions over and over.....but good grief.

I think my fingers just don't bend the way they used to. As a matter of fact, I KNOW they don't. After just a few minutes, every joint in my left hand was aching and sore. My poor guitar went back into it's case. And that's that.

I will just have to be content to sing along.

With this.

Study The Studies

Image found here. 

Every now and then I head over to the National Institutes of Health website and peruse the latest Sjogren's Syndrome studies. Here's a few that are currently active and seem interesting. Check them out:

Abatacept for Patients With Inflammatory Arthritis Associated With Sjögren's Syndrome: an Open-Label Phase II Study
This study is currently recruiting participants.
Verified January 2014 by The Cleveland Clinic
Sponsor:
Qingping Yao
Collaborator:
Bristol-Myers Squibb
Information provided by (Responsible Party):
Qingping Yao, Cleveland Clinic Foundation
ClinicalTrials.gov Identifier:
NCT02027298

Low Dose Cyclosporin A in Primary Sjögren Syndrome (CYPRESS)
This study is currently recruiting participants.
Verified September 2012 by Charite University, Berlin, Germany
Sponsor:
Charite University, Berlin, Germany
Information provided by (Responsible Party):
Eugen Feist, Charite University, Berlin, Germany
ClinicalTrials.gov Identifier:
NCT01693393

Baminercept in Sjögren's Syndrome
This study is currently recruiting participants.
Verified June 2013 by National Institute of Allergy and Infectious Diseases (NIAID)
Sponsor:
National Institute of Allergy and Infectious Diseases (NIAID)
Information provided by (Responsible Party):
National Institute of Allergy and Infectious Diseases (NIAID)
ClinicalTrials.gov Identifier:
NCT01552681

Truth

Sjogren's Syndrome Welcome Wagon

Yesterday's post elicited this comment:

I think I may be the "newest" sjoggie on here. Was just diagnosed the day before Thanksgiving....feel like I have entered a whole new world, so thankful for the internet! According to my rheumatologist (and seems to be verified by the stories I've read online), I am an oddball. My diagnosis came about because a blood donation turned up an abnormal test...more blood draws followed with my regular doctor and further confirmation of an autoimmune issue. Combined with the dry eyes, dry mouth, dry skin and (now) dry...other areas....it was diagnosed as Sjogrens with possible Lupus.

First off, I'd like to welcome our newest sjoggie to our little club. We're all nice folks here and when we say "I understand how you feel" we are beyond qualified to make that statement. Because we have been there and done that and have walked miles and miles in your shoes..

As I was reading her comment, a thought occurred to me.

Hey. Don't say it, people. I just got done saying how NICE y'all are so no opinions on how frequently or infrequently thoughts occupy this foggy old brain. Tsk.

Where was I now...oh, righto. My thought. Actually it's a question directed to YOU: If your present sjoggie self had an opportunity to go back to the first few months after your diagnosis -- like our anonymous commenter is -- what would you tell yourself, knowing what you know now about this disease?

And.

What advice or information would you share with any new sjoggie? What if you were a Sjogren's syndrome Welcome Wagon lady (now THERE'S an interesting mental image....) carrying a gift basket that contained bottled water, preservative free eyedrops, and sugar free mints?

Like this lovely lady, found here. 

I suppose that's two questions. But I know y'all can handle them. I'm looking forward to reading your answers.

Dizzy People Unite!

Wow.

I am surprised at the amount of email and comments that I received on my post about BPPV. There is certainly a large number of us, isn't there? My sentiments after learning that my experience was far from uncommon was similar to reader Leslie's:

You have no idea how .... well, I can’t say “happy”, but relieved to read your post about the vertigo you have been experiencing.  All I can say is add me to the boat.

Exactly. I'm not glad that there are others are as topsy-turvy as I am, but I do get a kind of strange comfort in knowing that I'm not alone in this, and I appreciate y'all sharing your expertise on the subject.

Guys. Do you know what this means?

This highlights the need to start yet another club here on Reasonably Well. You may recall that we have had several. The Bone-On-Bone Club comes to mind. As well as the decision that we had to admit men to our Autoimmune Club .

Hm. I wonder what we could call our club?

Bowling shirts. THIS club definitely needs matching bowling shirts.

Go Pack Go

Can't think about Sjogren's syndrome today. The Green Bay Packers are playing a playoff game. And Aaron Rodgers is BAAAAACCK!

Awesome Rodgers captioned photo found here.

See y'all tomorrow.

Spinning Strategy

So I'm still trying to figure out this whole BPPV (vertigo) experience over here.

This is seriously weirdo.

I never can count on being able to stand up, roll over in bed, or lie down without taking the chance that I will end up fanny first on the ground. If I'm lucky. I think I'm fortunate not to have taken a face plant yet. When it strikes, I feel as though a giant invisible hand is pushing me down to the ground with unbelievable force leaving me nauseous and head spinning.  Sometimes it's sickeningly overpowering.......and sometimes it's just gone.

I'm supposed to be taking meclizine every twelve hours, but I have come to the conclusion that all this drug seems to be doing for me is making me even more dopey and unstable on my feet and have quit taking it.

Last night somewhere around midnight, I reached over to my nightstand and felt the spinning begin. Well this is just ducky, I thought. I carefully sat up and wondered what to do. My doctor had given me a set of exercises which I have abandoned along with the meclizine because after repeated attempts to complete them, I find myself significantly more miserable. So I decided not to try them again.

Instead, I wobbled to my feet and began to carefully walk slowly and deliberately.

Step.
Step.
Step.
Step....

Hm. My interior top began to slow it's spinning.

Step.
Step.
Step.
Step.

Hey. I realized that I felt significantly better.

I spent the next twenty minutes roaming around the house. I experimented with lying down on the couch and getting back up again with frustratingly variable results.  Dizzy. Not so dizzy.

Step.
Step.
Step.
Step.

Finally after most of the vertigo and nausea had passed, I gingerly went back to bed making certain that my barf bag contraption was close by.

Whew.

Today, whenever I felt unsteady, I would stand up and step step step step step.

I think it's working.

Yes, I'll follow up with my doctor. And I'll keep ya'll posted.

Reading List

Boy, am I ever collecting a stack of books in my "to read" list. But reading just hasn't been easy ever since last summer when my cataracts caused such a ruckus, then the surgeries, then along comes this dumb stupid vertigo stuff.

I miss reading terribly.

But I think things are settling down a bit around here and I've cracked open a few books today and have started to triage which I'd like to finish first. Here's what I've come up with so far.

-- Radical Acceptance: Embracing your life with the heart of a buddha by Tara Branch, Ph.D.

This book has been recommended to me by several friends, all of whom have had to face significant changes in their lives and felt the need for additional strategies to deal with them.

Here's a paragraph from the back cover: "Radical Acceptance does not mean self-indulgence or passivity. Instead it empowers genuine change: healing fear and shame and helping to build loving, authentic relationships. When we stop being at war with ourselves, we are free to live fully every precious moment of our lives."

--  Tales From The Dry Side by Christine Molloy

Ms. Molloy also authors a blog entitled Thoughts and Ramblings on Life, Love, and Health and was kind enough to send me a copy of her book, which I am eager to read. It's a collection of stories shared by thirteen Sjogren's syndrome patients.

"Written by Sjögren's sufferers from various regions of the United States and Canada and including a foreword by Steven Taylor, CEO of the Sjögren's Syndrome Foundation, Tales From the Dry Side brings you thirteen courageous men and women who share their journey with diagnosis, symptoms, and treatment of Sjögren's, as well as candid portraits of how this illness has affected their families, their personal lives, and their careers. This book brings hope and comfort to the millions suffering from Sjögren's syndrome and to those who suffer from any of the eighty other identified autoimmune diseases, as well as to anyone faced with overwhelming obstacles."

--  Then there's all of the Mary Russell and Sherlock Holmes books written by Laurie King. Hoo boy. I love these things. But they're best read in order, and I've only read the first few. Here's a link to all of these books on Amazon.

This should be fun.

What are you reading these days?

Enjoy it While it Lasts

Yesterday was a grey and overcast kind of day until near sunset when the clouds cleared a bit and the fog drifted downwards from our little mountaintop. The foothills in the distance glowed with the orange light of the setting sun, and the fog below created the illusion of a white fluffy lake. Cool, I thought.

We've lived here for seventeen years and I don't recall seeing this unusual fog/sunset combination before.

I only had a few minutes to snap some photos (not enough time to switch to my telephoto lens, dang) before the beautiful colors faded and the fog rolled back in.

Going...

....going.....

....gone. 

Troublemakers

You know, I really hoped that this year would be different. Yes, I had high hopes for 2014 but gee.

I thought that maybe this would be the year.

Yessir.

This year I thought I would do a better job keeping tabs on all of my livestock. Especially the anthromorphized ones. Like Pinky and the Pinkettes and Norman the gnome. And my little herd of plastic Holsteins.

Actually flamingos and gnomes aren't really all that difficult to keep in line. But then there are those girls...tsk.

That rambunctious trio has been problematic ever since they arrived here fifteen years ago. They have never been content just to graze peaceably in our back yard, and it seems that they bolt at any opportunity.

Graduations. Birthdays. Weddings. You name it.....these three look for any chance to sneak away from our house to show up all dolled up and party like animals at big events.

Goodness. My resolution this New Year's was to try to rein in these cavorting cows. But here we are only at January FIRST and they've escaped yet again. Somehow they got wind of the big football game between the LSU Tigers and the Iowa Hawkeyes today and of course knew that a LSU family lived directly across the street from a Iowa family.

I should have known.

They're hopeless. I think I need a different resolution.