Monday, Monday...

It's interesting when I feel as though I have a hangover. And haven't had a drop of alcohol for months. Hm. Must have been the iced tea. Yeah -- all that iced tea I've been indulging in. Good grief.

I'm going back to bed. See y'all tomorrow.

Sunday Smile: Johnny Cash and John Lennon

John has been strumming his guitar with a little more frequency these days, and hearing him play makes me smile. Although he enjoys all genres of music, when he gets out what he calls his "git fiddle", without fail I hear bits of country music....and then the Beatles. So I was delighted when I came across the PBS series Blank on Blank: Famous People, Lost Interviews and discovered animated interviews with two of his favorite artists.

You might like viewing them too. Enjoy:

Sjogren's World: Auto Antibodies

We all know that autoimmune disease creates autoantibodies, but did you ever wonder which autoantibodies are usually associated with various diseases? Check out this graph, found on Sjogren's World Forum in The Path to Diagnosis section. 

Source: This chart is an adaptation from The Principles and Practice of Medicine, 23rd ed. Originally published by Appleton & Lange, 1996; per Sjogren's World Forum.

I found this interesting although since it was created in 1996, I am wondering if it is still considered accurate, and I'll bet that many other auto antibodies have been identified since then, specifically auto antibodies to SP-1, PSP and CA6, for example.

 The graph is an interesting starting point for understanding the complexity of auto antibodies. You can read more about the basics of Sjogren's diagnosis on Sjogren's World Forum here.

Venus Williams on ESPN: "There's no manual!"

Image found on Wikipedia. 

Thanks to Amy for alerting me to the interview given recently by sjoggie Venus Williams to ESPN. Follow this link to the video and written story.

It was filmed on a shoot for ESPN magazine's The Body Issue and yes, there is some footage included in which Venus is shown in the nude -- with legs and arms strategically placed of course. I agree with Amy's comment: "OK, so some of the shots that they used are from her photo shoot and show a LOT of skin. Honestly, they don't show any more skin than Sports Illustrated."

What's far more important than the amount of skin Venus bares is the amount of candor she employs when discussing the enormous toll that Sjogren's syndrome has taken on her life. And what does Venus identify as the biggest problem for her? FATIGUE. "I was so tired......It was a major workout just sitting in a chair!.....The worst is when you're laying in bed and you can't get up."

And my favorite: "There's no manual. No one says, Alright, now this is what you should do."

Isn't that the truth.

Venus goes on to make a realistic assessment of the challenges that she's faced as well as emphasizing that her glass is still half full. That she can still be involved in what she loves to do.

It's an excellent interview. Check it out -- and be prepared to be inspired.

Super Hydrating Nixie is Raising Awareness Yet Again!

I want to thank Amy, author of the Falling With Grace blog, for several things.

What a gal.

First off, she and the other members of the Sjogren's Syndrome Foundation Dallas/Fort Worth support group participated in this years SSF Walkabout, which in and of itself is a great thing. But to add to the awesomeness of their activities, they also dressed up in NIXIE COSTUMES!! Brilliant!

You may recall that Amy and her son Cole created Super Hydrating Nixie the water sprite as a fabulous mascot for sjoggies everywhere.

Secondly, Amy sent pictures of the event. Check them out decked out in all their awesomeness:

Third, she is sending one of their Nixie shirts to me! Woo hoo!

Fourth, (Yes. I have lots to thank Amy for today.) she sent me the link to sjoggie Venus Williams' interview with ESPN. More about this in an upcoming post.

And finally, Amy shared the news that her kitty cat Bridget turned out to be "Bob" and their other kitty Jupiter became a teenage mommy as a result. And attached a heart-melting youTube of unbelievable kitten adorableness.

So thanks, Amy. You made my day. I wonder if it's possible to wear out a youTube video by watching too many times......

Sugar Substitute

I don't know about you, but on low energy days I crave stuff. Sugary, buttery, baked stuff. I try to blame this on my prednisone but it seems that on good days I can pass up dessert-y type foods without a blink of an eye.

Then there's those days when I feel that I only have barely enough energy to get by. Just enough to dress, just enough to scroll through the day's news on my computer, just enough to roll back into bed for naps that last for two days.

Yesterday was one of those days and true to form, as I was prone on the couch wrapped in my zebra plush blankie, the craving hit. But I didn't have anything in the house that would seem to fit the bill. I didn't have the energy to actually bake something much less get into the car to go buy baklava.

Yes. Baklava. I have no idea why baklava. That's just the way these weirdo little episodes go.

So I laid there and wondered how I could recreate the effect of baklava, without baking baklava, or buying baklava. Or calling someone to bring me baklava. Hm. Pastry. Honey. Almonds.....nah, who needs the almonds...... For me, it was all about the pastry and honey.

So I shuffled over to the pantry and came up with this.

Saltine. Butter. Honey. Brilliant.

Dangerous.

A Closer Look

A few days ago, I wrote a post in which I included links to the American College of Rheumatology. A few readers sent some very good emails in which they pointed out problems with the Sjogren's patient information, specifically this section of the page:

BROADER HEALTH IMPACT OF SJÖGREN'S SYNDROME
A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.
Rarely, patients may have complications related to inflammation in other body systems, including:

• Joint and muscle pain with fatigue
• Lung problems that may mimic pneumonia
• Abnormal liver and kidney function tests
• Skin rashes related to inflammation of small blood vessels
• Neurologic problems causing weakness and numbness

Read this response to the above information from Dr. Sarah Schafer:

....ACR page outdated and misleading as to spectrum and severity of disease.  20- 40 % have organ involvement.  70 % have disabling fatigue. I hardly call that a normal healthy life! 

Also, most are diagnosed when older, yet delays in diagnosis standard, about 4.7 years ave. from seeking diagnosis.  Most of the people I interviewed for my Case Studies presentation had symptoms for decades, often puzzling, and usually not severe enough to seek diagnosis.  When we can diagnose Sjogren's early and accurately, the age of patients will be much younger! 

I think the more important issue is not how this website affects patients – few of them will read it - but that this organization is what rheumatologists look to for guidance.  This publication reinforces incorrect information, perpetuating the “Sjogren’s is not a serious disease” fallacy.  The result:  We don’t get diagnosed. We don’t get taken seriously by most docs when we are diagnosed, and little incentive to fund clinical treatment studies.    

Until the ACR gets on board, educating its members about the multisystem nature of the disease and spectrum of severity, we won’t get good care, except by the few docs who go out of their way to understand Sjogren’s.  It is rather outrageous that the specialty who is supposed to care for us remains woefully ignorant overall about the current understanding of Sjogren’s.

I have to confess that when I linked this information to my post, I gave it only a cursory read-through.  After a second reading, I would have to agree with Dr. Schafer and others' concerns regarding the ACR's dismissive attitude towards burden of disease aspects of Sjogren's syndrome.

Once again: Even at the highest levels, our disease needs more research, more accurate assessment, and better awareness of it's severity.

Good. But Tired.

I had a lovely but tiring day yesterday. See y'all tomorrow. In the meantime, behave yourselves.

Sunday Smile

Adorable baby picture found here. 

Today's smile-inducing post is happy news. Autoimmune Gal, health blogger, has just shared this:

...my husband and I are expecting our first child.  Yes, Autoimmune Gal is pregnant. 

We didn't know that having a family would be a possibility given my multiple autoimmune and health issues.  It took lots of communication and coordination with multiple doctors to just plan for the possibility of trying to get pregnant. 

Important medical questions and issues had to be addressed.  What medications would I be able to stay on?  Did I need to change medications or lower doses before becoming pregnant or was it safe to wait until a pregnancy was actually confirmed?  How would we keep my autoimmune disease in check, while trying to protect the baby?  Would pregnancy make my autoimmune manifestations worse, the same, or better? And these were just the tip of the iceberg.

I'm thrilled for this young family. But AG brings up some important issues since pregnancy puts an entirely different spin with different implications for a mother being treated for autoimmune disease. I wish her well and hope that she keeps us updated as her pregnancy progresses.

Congratulations, Autoimmune Gal!

Another Resource: The American College of Rheumatology

One of the most common questions that I am asked is, "How do I find a good doctor to manage my Sjogren's syndrome?"

Which is a GREAT question. Because this is a difficult thing to do, not because there isn't a lot of good doctors out there -- and there are -- but because each of us has a different personality, and different health specialties and issues; physicians and patients alike.

Most often, rheumatologists treat patients with Sjogren's, so this medical specialty is where the search usually begins for diagnosis and treatment.

I've posted earlier about Sjogren's syndrome specific clinics, read this, but have found another potential resource for those looking for a rheumatologist. It's the membership directory of The American College of Rheumatology:

The American College of Rheumatology's mission is advancing rheumatology! The organization represents over 9,400 rheumatologists and rheumatology health professionals around the world. The ACR offers its members the support they need to ensure that they are able to continue their innovative work by providing programs of education, research, advocacy, and practice support.

Membership in this group does not imply that each of these physicians are specializing in autoimmune disease, however. And of course, there are excellent rheumatologists who are not included in this list. But it's another resource for those patients actively searching for good care.

I found it interesting that patient education materials are also located on the site. You can read their page about Sjogren's syndrome here. This is their page on Plaquenil.

My Back's Birthday Present

Guys. Remember my post a few days ago when I ordered my birthday presents? The last of them came yesterday, and it's a goodie.

I love digging around in the dirt but I promised my physiatrist that I would take better care of my back these days. And the weeds in my back yard are just begging to be pulled and tossed in the lawn recycle bin. Yes, they are. I wake up in the morning and I HEAR them:

Juuuuullllliiiiaaaaaa.....nanernanernaner! We're out here just sucking up all the nutrients and water and good stuff from the dirt that you think is going to your blueberry bushes. And roses. And zinnias. 

Then they blow me raspberries. Weed versions of raspberries. Honest. Thhhhbbbbtttt! 

Ah, but now that this beauty has arrived, I plan on silencing those weed stinkers.

I got mine here. 

It's called a Rocket Weeder, and I gave it a test drive as soon as I unpacked it. This thing works, people. I don't have to bend over.  I just step on the lever, tilt the thing backwards, and up comes the weed.

Take THAT, you little green garden gremlins.

Then, I give another button a push and the nasty little flora critter gets dumped into a bucket. Sweet. Now all I need is some cloudy days so that I can get outside and wage my weed war.

Excellent

What a good day yesterday was. I'm thoroughly enjoying the chair I gave myself for my birthday, and my epidural went off flawlessly. .::happy sigh::.

Lulu approves of the chair too.

John is a master put-stuff-together kind of guy.

Does a Sjogren's Syndrome Diagnosis Put You at Risk for MI?

Image of MI -- or myocardial infarction AKA heart attack -- found on Wikipedia. 

Interesting. Read this from Medpage Today regarding elevated risk of MI in patients with Sjogren's Syndrome:

PARIS -- Patients with Sjogren's syndrome, an autoimmune condition characterized by inflammation of the tear ducts and salivary glands, had more than double the heart attack risk seen in the general population, a researcher reported here. 

Compared with matched controls, patients with Sjogren's syndrome had an incident rate ratio for myocardial infarction (MI) of 2.19 (95% CI 1.40-3.31), according to Antonio Avina-Zubieta, MD, PhD, of the University of British Columbia in Vancouver. Continue reading here.  

(Medpage Today adds this comment: Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.)

Dr. Avina-Zubieta presented his findings at the European Conference of Rheumatology 2014. He and his colleagues also discovered this:

They also looked at the risk over time and found that MI risk was almost four times higher during the first year after diagnosis (RR 3.6, 95% CI 1.6-7.3), "with inflammation being the main driver of risk during early disease," he said.

Startling: MI risk four times higher during the first year after diagnosis. This is concerning in and of itself, but I wonder how these numbers vary in view of the fact that many people are not diagnosed with Sjogren's for many years, some even decades.

Once again -- Early detection and diagnosis is vital.

Watch Out Weeds

I love birthdays. Mine, especially. My birthday is a great excuse for buying things. So I use it for the entire month of June.

My latest birthday present to myself is this gardening gadget:

I got it because I take a perverse pleasure in ripping weeds out of the garden by their roots. But bending over to do that is really hard on my back. The advertising for this device claims that when I use it, I can yank weeds to my hearts content without bending.

Woo hoo!

After if finally stops raining, I'll give it a test drive.

Show Me The List: Sjogren's Syndrome Centers

I received an email a few days ago in which the writer told me that her ENT doctor strongly suspected that she had Sjogren's syndrome. She wanted to know how she went about finding a Sjogren's specialist. I sent her my usual response:

A variety of physicians treat patients with Sjogren's, however usually a rheumatologist diagnoses and manages this disease. As a place to begin, I would ask your primary physician or your ENT for a referral to a good rheumatologist that treats Sjogren's Syndrome patients. And how does one find a good rheumatologist? THAT's the big question. I am working with a rheumatologist and I knew he was a keeper when on our first appointment, he sat down and went through everything with me for one whole hour. I've been very satisfied with the care that I have received from my rheumatologist -- AKA Dr. Young Guy on my blog -- and haven't felt the need to look for care elsewhere. 

But also added this:

I do know of some Sjogren's Syndrome specific clinics located on the East coast: Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center, website here., University of Pennsylvania Health System Sjogren's Syndrome Center in Philadelphia, website here. Massachusetts General has a Sjogren's program, website here. 

Then there's the  Baylor College of Medicine Sjogren's Syndrome Clinic in Houston, Texas, website here.  

The Sjogren's Syndrome Clinic/UCSF Medical Center, it is located in San Francisco California. The clinic is operated by an oral health physician and an opthamologist. Dr. Ava Wu, the oral health physician, is active with the national Sjogren's Syndrome Foundation and I have read several of her articles published in their newsletter. Website here.  

Check my sidebar for my post which contains a list of physicians who specialize in lung complications in Sjogren's Syndrome; if you need that list let me know. Otherwise, if you are just beginning your diagnosis and treatment journey, I would suggest finding a good local rheumatologist. You may want to join and ask the members of the Sjogren's World Forum for recommendations for rheumatologists in your area. The forum is well moderated and has a large following. I have seen other patients ask for specific physician references and evaluations there. You can find the Sjogren's Forum here. 

I felt that my response sounded pretty wimpy and I wished that I had an up to date list of Sjogren's Syndrome specific clinics to share with her.

Do you know if such a list exists? If not, I am thinking it may be time to compile one. What do you think? Do you know of this type of listing? Do you have knowledge of another specialty clinic other than the ones that I have listed above?

Sunday Sunset

I love this. Enjoy.



Found on the excellent The Kid Should See This.

Swingin'

My birthday is coming up next week, and as is our custom, John asks me what I want, I tell him, and then he asks if I want him to get whatever item I've asked for, and I always say, "Oh, thanks, Bunny, but I'll just do a little shopping." after which I hop onto the Amazon site and click the "Buy it Now" button.

Brilliant.

It's a great system. We do the same thing when his birthday rolls around.

This year, I decided that I would love another boingy-type swing; one that I could have on my deck. My fabulous hammock chair is hung from underneath the deck and to get to it requires a trip down the basement stairs. I thought I needed a place to get my swing fix on both stories of the house. Like this one, found here.

Too bad we don't have a palm tree from which to hang it. 

It came today, and boy oh boy. It looks like there's some serious assembly required.

I'll let y'all know how it goes.

AARDA and Modropy and T Shirts

Spiffy. 

Guys. I am sure that this fund-raising event for AARDA was tweeted and Facebook-ed all over the place, but I was just being clueless me and missed the kick-off of this great campaign. Thanks to the AARDA for re-tweeting a link to Modropy:

We are a simple, conscientious group of people who understand that the world is full of larger challenges than many of us face and that there is much more that needs to be done. We strive to become catalysts of social empowerment, humanity and inspiration. We take philanthropy seriously; we work ceaselessly to encourage people to take up philanthropy as a way of life.

This week's Modropy fundraising campaign will support the American Autoimmune Related Diseases Association. If you buy one of their cool awareness-raising t-shirts, eight dollars will go directly to the AARDA. There are still about three and a half days to participate. Check it out:

Blue Isn't So Bad

Well. Another day, another milestone reached in my journey to getting a realistic perspective on my disease.  Today, I turned in my red temporary handicapped parking hang tag for the blue one.

The permanent one.

I have to admit that when the DMV clerk slid that piece of blue plastic over the counter for me, I hesitated before picking it up. I had been driving around for the last six months with the bright red temporary tucked into my purse pocket. Every time I took it out and hung it from the rear view mirror, I told myself, Well. This thing is only temporary. I don't need one of those blue permanent ones. Maybe in six months things will be different. Yeah. In six months I'll probably look back and be amazed that I needed to use handicapped parking at all. In six months....

I know. Denial. Delusion. De - just about anything that indicates a total refusal to face facts.

But the six months ticked away and before I knew it, they were gone. And, gee what a surprise! There had been no miraculous return to impeccable health. In all honesty, I wasn't really expecting it. I knew in my heart that it was time to face facts and just ask Dr. Young Guy to fill out the forms for the dumb stupid blue tag. So I did. And after pausing for just a second, I took that tag and slid it into my purse.

Time to just get on with life. Doesn't matter whether I have a red or a blue tag.

Epidural. Take Two.

Doesn't matter how cute you are, Miss Lulu. This is still partially your fault. 

Sigh..

Yesterday, I was forced to lock myself in my closet and have yet another of those weirdo conversations with myself. You know; the ones in which my Bratty Inner Child Julia attempts to convince me NOT to do something that I know is necessary. I've found that it's best to conduct these exchanges while sitting on the floor of our walk-in closet. I can close the door, yak away, and no one is the wiser.  I wouldn't want it to get around the neighborhood that I spend considerable time and energy talking to myself. My neighbors already think I'm slightly batty.

It started about three days ago when I I noticed a decided twinge of back pain after wrestling around on the back yard lawn with Lulu and her doggie friends. I'm clueless when I'm comfortable, really I am. If I would have given this silly maneuver any thought at all, I may have realized that I wasn't doing my back and it's spinal stenosis any favors with my gyrations.

Ah, well.

After I painfully sat up and limped to the house, I tried to ignore the symptoms of increased back pain but was forced to acknowledge it's presence when my right foot became numb after hoofing it around the grocery store later in the day.

Grrr.

BICJ immediately took the opportunity to strike up a completely illogical conversation. Oh, we're just overreacting. It's nothing. Just ignore it.

ME: I'm not overreacting. I think I need to call my physiatry physician again.

BICJ: No. I'm not going back to a clinic any time soon and you can't make us. Listen, this can be cured easily with a trip to Krispy Kreme and maybe the frozen custard stand. Seriously.

ME: .::facepalm::. So it's going to be one of those arguments again? Into the closet. Now!

BICJ: Only if we make a nice cup of tea and take it with us. Do we have any cookies?

ME: Upstairs. Immediately. .::slams closet door::.

BICJ: Wow. Look at all those great shoes that our foot doctor won't let us wear!

ME: Nice try at distraction, but it won't work. Let's discuss our back situation.

BICJ: If we must.......But really. We would feel really dopey to admit to the doctor that we probably did something really stupid, do we? I mean, in addition to all of the other stupid things that we've already told him. How about lots of ice packs and ibuprofen instead? AND Krispy Kremes and frozen custard? Hm....maybe we should throw in a Butterfinger Blizzard for good measure.....

ME: Mmmmm......Krispy Kremes......  .::vigorously shakes head::.   STOP THAT. STOP GIVING US THOSE TERRIBLE IDEAS INSTANTLY!!

BICJ: And even if we decided to call, what is the doctor going to tell us? That we should come back in and pay another insurance co pay and maybe have some other stuff done, like -- geez -- you don't think they'd repeat the epidural this soon, would they? No. I don't think they would. So we should just forget the whole call-the-doctor project. We can be over to the frozen custard stand in ten minutes tops. Better idea. Much better.

ME: .::puts fingers in ears::. I'm not listening to you until you start making some sense. .::begins singing The Star Spangled Banner::.

BICJ: Hey! That's my maneuver!

ME: I think we should take a walk around the block to see if we fall over and potentially break a bone or something when the foot goes numb again.....that might convince you of the need to address this...hmm...

BICJ: Uncle! Uncle!  OK, I give up. How about we call the doctor.......tomorrow?

ME: .::whips out cell phone from bra and speed dials physiatry::.

I was pleasantly surprised with the discussion that followed with the very logical physiatry advice nurse. She asked me several questions, reviewed my chart and previous procedure and imaging studies, and promptly scheduled me for a repeat epidural. Even when I 'fessed up and admitted to her that I had begun to take my pain free status for granted and was not taking good care of my back, she didn't seem surprised or fazed. "It's OK. Sometimes we just have to repeat the procedure when patients get partial relief. I'll clear this with your doctor, of course. We can talk more about activity and exercises for your back after the procedure."

So. One week from today, I'll be hanging out in the pain clinic with the C-arm fluoroscopy machine and another physician. The nurse was optimistic that the previous excellent epidural results could be duplicated.

Stay tuned.

Sjogren's Ratio is 9:1

Thanks to Liz Day for posting this graphic on the Sjogren's Syndrome Foundation's Facebook page:

Serene

Yesterday was a real gift. We didn't do anything unusual or anything; just went to church, did a little shopping, took a nap, and went out for dinner. Good stuff. What made yesterday seem special was the very difficult to describe emotional response I experienced as John pulled the car into the garage after dinner.

I felt.....as though I was simply in the right place, at the right time, and with the right person. I felt a quiet and happy contentment.

Nice. I wish I could package up moments like these and re-visit them when I need to.

It helped that the weather was perfect, we enjoyed a great dinner at one of our favorite places down by the Columbia river, and as the garage door opened I noticed yet again how my inexpensive farmer's market flower baskets are growing like crazy this year.

Deep fried pickles. Mmmmmmm.

They're BEASTS. Awesome.

 I hope your weekend was a good one, too.

Sunday Smile: Kids these days.....

OH. MY. GOSH. Is there anything cuter than a baby kid?

Well, yes there is. A whole herd of them is exponentially cuter. The owners of Sunflower Farm say that these goat babies go out to their forever families in groups of two and are never slaughtered but are sold only as pets and dairy animals.

Goats! Squeeeeeee!

I think the last one into the barn yelling, "Wait for MEEEEEEEEEE!" is hysterical. 

Autoimmune Gal: Coping With Patient Burnout

She's right. It's a marathon. Image found on Wikipedia.

Autoimmune Gal has penned yet another excellent post entitled Coping With Patient Burnout in which she focuses attention on an issue too often overlooked -- the heavy burden chronic disease patients carry when they realize the implications of a lifetime of managing their health:

There is a new kind of burnout that I fear the medical profession has failed to realize.  What about patient burnout?  We're always hearing concern about physician fatigue and quality of life--and that the medical system, its administrative burdens, and payment system has created an untenable situation for physicians. But what about how this impacts the people the health profession is intended to help and serve? Patients, especially those like many readers, who require constant care.

Continue reading here. She goes on to list six specific things that she tries to do to ease some of the mind numbing effects of camping out long term in a doctor's office. Here's my favorite:

Accept that this is a marathon not a race.  Similar to accepting that chronic illness is a long term battle, so are all the parts of dealing with the healthcare system that come with it. I've learned that even if I try to take care of everything related to my health as perfectly as possible, new challenges will emerge.  I won't get a gold star by pushing and exhausting myself to be the perfect and most efficient patient.  Conserving physical and mental energy for the long haul is a priority.

The author ends her post with this:

How do you deal with patient overload and frustration?   Please share your strategies. I would love to post them in an upcoming blog.

So. What's your strategy for avoiding patient burnout?

I Get It

I thought all of the responses to my 6/14/14 question What's New? deserve to be re-posted. As is typical of autoimmune disease and was demonstrated in the comments, the state of our well-being seems to constantly be in flux. There's those blissful times when Sjogren's seems to fade away to nothing, and boy oh boy, we've all learned to cherish those days, haven't we? But of course since we have SjS, our bodies will also occasionally throw us for a loop in unexpected ways. It's just the nature of this dumb stupid autoimmune beast.

When I am not feeling my best and vent about my challenges here on Reasonably Well, your supportive comments help me deal with this very frustrating disease in an enormous way. Encouragement from one sjoggie to another is an incredibly authentic type of support, since those that haven't walked our autoimmune road just don't understand. They may have the best of intentions: they may love us and sincerely want to help us in any way they can....but the fact remains that communication and empathy from another dealing with the same disease is therapeutic beyond measure.

So as you share your struggles and victories here, please know that I get it. I really do. I'm sending those same healing and positive thoughts your way as well, and other readers are doing the same.

Group hug, people! .::sniff::.

Flare :( 'nuff said.
Vickie Spires
at 8:04 AM

Cystitis wah, wah , wah...
Kelly
at 7:26 AM

Hi Julia - Thanks for the blog. It has been a huge resource for the last several months! And, thanks for asking. I clearly have Sjorgrens and have for 10+ years but also have some other connective tissue "thing" that doesn't quite manifest itself enough to warrant a full diagnosis. I have been on Plaquenil for four years. I struggled during the last year with terrible brain fog and fatigue; a long-term, low dose course of prednisone has worked miracles and let me manage the work/life balance more sanely. Rheumatologist wants to taper it this month and I will keep my fingers crossed! Good luck with your treatment!
Unknown
on 6/4/14

Hi Hilary, I'm not sure if it gets better or if we get stronger, but a couple of years into the diagnostic process (don't know if they'll ever know for sure with me or if I'll be "undifferentiated" forever) it has definitely gotten easier. For me, my initial fatigue and the stress of not knowing what was wrong at all seemed to cause the brain fog. It lifted somewhat as I found my bearings. I hope it does the same for you.
Nicole
on 6/4/14

I haven't seen a Ruematologist for almost a year. They gave me some kid at U of Dub and I refuse to teach them. My primary has been treating me, picked up a nasty Diabetic bug from ODing on 100's of mgs of Prednisone, I'm back on metformin. I have another basal cell sarcoma that will be coming off the patch on my head they already took off. I have to go back and have another mam because they found something they want to look at again. And I'm still waiting for the judge to settle my SSI.I followed you on your trip. I have been active leaving commentaries, writing the White House and playing Tokyo Rose to peace loving folks around the globe. Other than that- nothing, I'm doing nothing.
Shara Bingham Mills
on 6/4/14

Hi Julia! I just got off a tapering steroid treatment to get through a flare and then, Bamo! The grass allergy hit and I feel cruddy again!
Bubble Girl:Navigating the world in a bubble
on 6/4/14

Hi Julia, Not feeling particularly energetic, probably due to problems with sleep I'm having lately.... sleep a couple of hours and toss and turn all night long, snatching some sleep here and there makes for a very brain fogged and tired sjoggie. Also the usual, like IBS, allergies and asthma, which are bad in my neck of the woods this year and just trying to get through life one day at a time as best I can. Keep well, good to hear from you.
annie
on 6/4/14

Feeling hopeful. Have been on Methotrexate for a couple of months and I don't ache! Yay! Lovely weather and vitamin D have contributed to my general well being but fans and A/C really irritate my eyes. Very busy season in my job and I actually have had the energy to garden or go for a walk in the evening. I was a bit afraid of our upcoming road trip through the Pacific Northwest down to California but feeling so well I can hardly wait! Thanks for your blog, I found you after my first big Sjögren's crash ( flare ) in January and decided I needed to accept the fact I had a chronic illness and educate myself, and your articles have been so helpful!
Nancy Joyce
on 6/4/14

The last 6-7 weeks have not been fun... My asthma is acting up. You don't ever realize how you take breathing for granted until you have to work at it. Still not seeing any benefits by taking Methotrexate either. Quite worn out from all the company I have had at my house... Pushing myself beyond my own limitations.... Now I am paying for it. Last trip to the doctor I told him about a lump under my arm.... Upon examination he discovered several swollen lymph nodes and I began an antibiotic regimen. Wish me luck!
ShEiLa
on 6/4/14

I just started reading your blog (awesome find) (thank you) ... as for me I'm still going through diagnostic stuff. So everyone is comfortable saying I have Sjogren's now (and I've been taking Plaquenil for a few months) and they are still thinking lupus/other connective tissue stuff but time will tell. Recently had a CT scan for ongoing sinus issues and smell confusion which revealed a cyst, so have to go to ENT to see if they want to remove it. The other thing is that I have felt increasingly flustered/fogged/disorganized in the last year, like I get lost in conversations and it's freaking me out. I hate having to investigate every little thing right now bc it makes me feel like a self-obsessed hypochondriac. Does it get better?
Hilary
on 6/4/14

Hi Julia. The drama that goes along with 2 teenagers in the house is more problematic than my Sjogren's at the moment. Maybe things will settle down once school is out for the summer but I think I am doomed. My sjogrens always gets interesting during the summer months.
Sue
on 6/4/14

Been doing surprisingly good. Not managing work/life balance particularly well but haven't flared for ages...touch wood. I still love my long term low dose antibiotic therapy. It has kept me functioning and employed for years longer than otherwise would have happened. I know it isn't everyone's cup of tea but it's worked for me for decades and having gone off it once I will never ever ever go off it again. Thanks for asking.
Heda
on 6/4/14

Struggling with Interstitial Lung Disease, which is painful as well as making me short of breath.  Of course.  Lots of fatigue, and having a hard time with what would be a minor cold. Still taking 17 mg of prednisone and 50 mg of imuran - hoping to slowly lower the prednisone and raise the imuran.  Very depressing.  Other SS symptoms the same.
Claire
on 6/4/14

I'd Like to Whack My SCLE Into Submission

You can buy your very own Whac A Mole arcade game for a mere $4500.00 on Hammacher Schlemmer here. 

Do y'all remember that arcade game called Whac a-Mole? The one where you get a big old hammer and the point was to bop all of the moles that popped up? And every time you bopped a mole back into his hole, another would show up in another spot?

I always felt kind of sorry for those moles, by the way...

But it's a pretty good comparison to the current state affairs with my annoying skin situation: subacute cutaneous lupus erythematosis. Even though I'm wearing sunscreen, a hat, and faithfully dabbing triamcinolone cream on each lesion; for each one that fades, another bright red scaly one pops up somewhere else.  Bleah.

I'm seeing Dr. Young Guy next week. Guess I'll add dumb stupid SCLE to my list of discussion topics.

What's New?

Guys. I feel as though I've dropped off the face of the earth over the last few weeks, and although John and I have enjoyed our vacation immensely, I feel the need to catch up with y'all.

So. What's been going on with you? Several of you have shared with me earlier that you were either scheduled for or contemplating undergoing a rituximab infusion. Others have let me know that they are exploring non-traditional treatments for the symptoms of their autoimmune disease.

Are you well? Are you struggling? Or are you something in between?

Fill me in. I'm all ears.

See? Well, at least I'm ONE ear. And notice the lovely new lupus blotch right in front of it? Ewww. 

Photoshopped? Or Reality?

Yeah. Like this picture, for example. 

I've been looking over the zillions of vacation pictures that I have accumulated on my Canon memory card. And, as always, I tend to hit the delete button quickly of those that have me included in the image, especially the ones that emphasize my um.....womanly.....figure.

Y'all do it, too. I just know it.

But I'm rethinking this tactic. Yesterday, Dr. Joseph Reddington tweeted a link to an excellent article entitled, "What if Famous Paintings Were Photoshopped to Look Like Fashion Models?", and after viewing it I decided to retrieve a few of those deleted pictures from the trash folder. Just a couple.

The article makes an excellent point with several pictures and very few words. Check it out.

Tears Magnified

Tear system: a. tear gland / lacrimal gland, b. superior lacrimal punctum, c. superior lacrimal canal, d. tear sac / lacrimal sac, e. inferior lacrimal punctum, f. inferior lacrimal canal, g. nasolacrimal canal

Image found on Wikimedia Commons

I'm going to spend the next couple days resting up from our big road trip. In the meantime, enjoy these amazing pictures of dried and magnified tears taken by photographer Rose-Lynn Fisher. Thanks to Jennifer Pettit for alerting me to this story. Here's a snippet from The Smithsonian article about these beautiful photographs:

Closely studying tears for so long has made Fisher think of them as far more than a salty liquid we discharge during difficult moments. “Tears are the medium of our most primal language in moments as unrelenting as death, as basic as hunger and as complex as a rite of passage,” she says. “It’s as though each one of our tears carries a microcosm of the collective human experience, like one drop of an ocean.”

Fisher has entitled this body of work as the "Topography of Tears" and you can read her description of this project here.

Her images are copyrighted, so visit here and here to view them.

Amazing.

AAaaaaaannnnnnnnndd That's a Wrap

We finished our latest travel adventure yesterday. I knew home was just around the corner when I began to see this:

Ahhh. Be it ever so humble, there's no place like home.

Gee. And I didn't even need to click my ruby slipper heels three times....