Saturday, May 23, 2015

Doug Savage: Getting Exercise Via the Stationary Control

I was thinking about exercise the other day.

You'll note I said THINKING. Not DOING.

Several health and wellness professionals remind us that even if one isn't able to do lengthy strenuous workouts, small bits of daily exercise can still be beneficial. It appears Doug Savage has one solution to incorporating more activity into our daily lives:

Um. So I'm supposed to get out of my chair and go all the way over THERE?  Wait......I don't think I know how to manually change channels on my television. Where IS the button to do that, anyway?


If I want a more realistic way to get some exercise, I suppose I could take a small well-behaved doggie on a short walk. Which means I'd need to actually GET a small well-behaved doggie. Sorry, Lulu the Woo-Woo. I'm thinking you don't meet that description.

Friday, May 22, 2015

It's Happening in Bergen: 13th International Symposium on Sjogren's Syndrome

Sometimes when I'm having a day that's less than stellar autoimmune-wise, it's easy for me to descend into a seriously grumpy mood. This is due to lots of reasons: frustration with my body; frustration with my disease; and always frustration that there is not a cure for Sjogren's Syndrome and autoimmune diseases. Inevitably I fixate on the latter cause, since it's much easier to put blame and anger on a faceless scientific community that I assume must be sitting on their duffs not doing much of anything about our disease.

Which is not accurate. Seriously. While it is true that other diseases garner more attention and research dollars, many knowledgeable and dedicated scientists and physicians from all around the globe are working toward better treatment and hopefully a cure for Sjogren's syndrome.

Case in point: This week in Bergen, Norway, physicians, researchers, and Sjogren's patients are participating in an international gathering to share information, research, and experiences. This truly is an international event. Check out the advisory board and committee members:
International Advisory Board
Stefano Bombardieri, Italy
Philip Fox, USA
Haralampos M. Moutsopoulos, Greece
Ann L. Parke, USA
Susumu Sugai, Japan
Takayuki Sumida, Japan
Athanasios G. Tzoufas, Greece
Pierre Youinou, France
International Scientific Committee
Juan-Manuel Anaya, Colombia
Fransesca Barone, UK
Michele Bombardieri, UK
Hendrika Bootsma, The Netherlands
Simon Bowman, UK
Shunle Chen, China
Philip L. Cohen, USA
Troy E. Daniels, USA
Salvatore De Vita, Italy
Ayhan Dinç, Turkey
Thomas Dörner, Germany
Robert Fox, USA
Eric Gershwin, USA
Yoshio Hayashi, Japan
Gabriela Hernandez-Molina, Mexico
Falk Hiepe, Germany
Gabor G. Illei, USA
David A. Isenberg, UK
Cees G. M. Kallenberg, The Netherlands
Yrjö Konttinen, Finland
Zhanguo Li, China
Fabienne Mackay, Australia
Xavier Mariette, France
James E. Melvin, USA
Ulf Müller-Ladner, Germany
Gunnel Nordmark, Sweden
Jacques-Olivier Pers, France
Constantino Pitzalis, UK
Paul Plotz , USA
Manuel Ramos-Casals, Spain
Andreas Radbruch, Germany
Shigemasa Sawada, Japan
Juan Jose Scali, Argentina
Yehuda Shoenfeld, Israel
Kathy Sivils, USA
John Stone, USA
Elke Theander, Sweden
Kazuo Tsubota, Japan
Guido Valesini, Italy
Vladimir I. Vassiliev, Russia
Claudio Vitali, Italy
Cristina Vollenweider, Argentina
Marie Wahren-Herlenius, Sweden
Abstract topics sought during this conference include:

1. Classification criteria and new diagnostic tools
2. Preclinical disease and Sjögren’s syndrome in younger patients
3. Extraglandular manifestations
4. Classical sicca symptoms
5. Personalized and cell-based treatment
6. Patient panel (representatives for patient organizations)
7. Autoantibodies and autoantigens
8. Immune cells in Sjögren’s syndrome
9. Type I Interferons in Sjögren’s syndrome
10. Cytokine networks in Sjögren’s syndrome
11. Genetic aspects of Sjögren’s syndrome
12. Animal models for Sjögren’s syndrome
13. Systems Biology and bioinformatic approaches
14. New Biomarkers for Sjögren’s syndrome
15. Biobanks, registries and international networking

I am assuming that some kind of summary of conference presentations and abstracts will be made public, hopefully in an upcoming Sjogren's Syndrome Foundation publication such as their Sjogren's Quarterly. I'd love to learn more about personalized and cell-based treatment in particular.

Stay tuned.

Thursday, May 21, 2015

Gotta Go With the Flow

Like my new wine/margarita/mimosa/ice water glasses? Can you believe that they're plastic?

Plastic glasses are my latest concession to whatever is making me drop things. I could be more clumsy as the result of lots of things; tremor, medication side effects, caffeine shakes, or just that I'm being ME. But the bottom line is that for whatever reason - I've broken far too many glasses lately and it's time that I minimized the time that my mitts hold an authentic glass object. I've been lucky so far in that I haven't damaged anything else but the unfortunate things that I've dropped and haven't stepped on any glass shards.


These gorgeous plastic wine glasses, however, are pretty darned spiff. I like the colors and they're top rack dishwasher safe. While shopping for these beauties, I realized that with stores stocking summer patio products right now there's oodles of attractive unbreakable tableware out there.


Wednesday, May 20, 2015

SSF Conquering Sjogren's Blog: 10 Lessons From a Great Teacher

I enjoy reading the Sjogren's Syndrome Foundation's  blog entitled "Conquering Sjogren's". The most recent post, 10 Lessons From a Great Teacher is written by Alida Brill and it's a gem:
Most of us have memories of a teacher who influenced our lives. I certainly do.  But my greatest teacher has been chronic inflammatory autoimmune disease. Obviously, I use the word great here not as in “wonderful” but as in “of extraordinary importance and weight.” 
A few years ago a young woman approached me after a talk I gave about living with chronic disease for my entire life (well, from twelve forward, so close enough). She wanted to know precisely what I meant when I said: At the end of it all, it really hasn’t been all bad. 
Understandably, she wanted to know what wasn’t all bad about always being unwell.  She had been recently diagnosed with Lupus and saw the life she had known and valued disappearing. She was overwhelmed by the unknown and confused by conflicting medical opinions about treatment options. I said a few things, likely not useful, but her question stuck with me.  Precisely what do I mean when I say that? 
During virtually all of last year I was sidelined from doing almost anything as I went from one autoimmune crisis to the next.  The only thing I could do consistently was to let my mind spin out of control, which often took me to destructive destinations.  That young woman kept appearing in my daydreams.  If I were to offer anything useful to others who live on this planet of chronic illness, I had better come up with something to back up the platitude. At first I thought the deeper meaning was that I pay more attention to the things that count in life, and less to those that don’t.  But many of us do that, whether we’re ill or not.  I spent some time thinking about how to fashion a life of illness into a life of lessons.  Here is how illness itself became a great teacher to me, and the ten lessons I took from it. Continue reading here

Tuesday, May 19, 2015

The Title Says it All

BS - that is, before Sjogren's - I used to love music and singing. I was part of a few choirs that practiced and performed regularly. I'm not a particularly good musician, but I enjoyed being part of a fun group of folks making music. But as Sjogren's dryness and fatigue appeared, I was forced to give up my hobbies such as choir first, then my job, and then even some of my responsibilities around the house.

Y'all know the drill. It seems that it happens to all of us in some manner. This makes me cranky even to think about it.


So my friend Terese is actually a very, very good musician having been a music teacher for thirty years, a church accompanist, and a singer in two choirs. I used to love standing next to her and following her expert lead as we sang together over the years. I miss it, and Terese knows it. She's been urging me for the past year or so to consider dusting off the old vocal cords and joining one of her choirs.

"It's perfect for you. It's a group that sings for nursing homes and assisted living centers, so they're very appreciative and forgiving audiences. When you can come to rehearsals or gigs, come. When you can't, don't. You can sit on a chair for performances, and just participate when you feel like you can."

I've been thinking about that invitation for a long time, and in all honesty I'm not sure what prompted it, but a few weeks ago I decided to give it a try. What a hoot it's been to be reading music and pounding out harmony on my piano.

I participated in my first little concert tonight, and what fun. I struggled for my pitches; and the energy required for me to sing for a half an hour - even while perched on a chair - left me hoarse, sweaty, and very tired.

How wonderful. Seriously, I had a blast.

The group doesn't perform on a regular schedule, but I can't wait till we can sing again.

Monday, May 18, 2015

HHS: Surviving WIMS (Web-Induced-Medical Stress)

Happens to me all of the time: I sit down to my computer and do a search on an ailment and end being either scared silly or totally confused. It's so important to get your medical information from reliable sources, such as

Sunday, May 17, 2015

More Photographic Evidence

.....that our recent road trip was indeed a success. We dubbed our quest "The Mission Mission" since our goal was to visit several of the northern California Spanish Missions and anything else that caught our attention between Portland, OR and Santa Cruz, CA.

What fun.

Saturday, May 16, 2015

Put it on a Poster

After last week's road trip, I came home feeling pretty optimistic about my energy coping tactics. We rolled into town on Saturday, my travel adrenaline rush kept me going until Sunday (isn't that the weirdest thing how one can go from such a high to such a low??) and I crashed on Monday, right on schedule. I've been pretty good about resting and pacing myself this week and easing myself back into some kind of post Sjogren's normalcy, and I have to admit I felt pretty smug after doing a little grocery shopping and housework.

Then yesterday I got all cocky and decided to haul some empty decor boxes down from the attic. I grabbed a few dirty towels and a half-empty cup of cold coffee along the way because loading my arms right up to my eyebrows with lots of bulky items seemed like a good idea at the time, headed down the staircase and promptly fell down the last few carpeted stairs onto the hardwood floor.

I sat there in a puddle of coffee counting my lucky stars that overall I was fine. I also thought about what a dumb stupid thing I had done and that it could have turned out much worse.

The very familiar and all too appropriate phrase, Pride Goeth Before a Fall also came to mind. Yet again. It would be interesting to do some kind of search on Reasonably Well to see how many times I've typed THOSE EXACT WORDS in response to some dumb stupid thing that I've done simply because I was certain that I could rely on some skills that I no longer have.

Hey. I need someone to print some version of that adage on about a dozen posters and wallpaper my house with them. This one's a goodie:

Gee. I can buy a whole bunch of these here

Golly. Does that imply that I should have a free hand to actually HOLD the handrail? Might be worth pondering...

So this purple one should probably get hung out in the garage right at the spot where I lose either my footing or a half gallon of almond milk because I've grabbed far too many grocery bags on my way from the car to the kitchen.

found on Pinterest

Actually, this one is my favorite. I think I'm hopeless:

found here. 

Friday, May 15, 2015

Sir. Just put them into my car immediately....

I was too busy petting to snap a picture. But they looked exactly like this these two found here. 

I just have to share an incident during which the potential for a double goat-napping was huge.

Yesterday, after yet another entertaining visit at Bev's house, I rounded one of the many corners in her neighborhood. I slowed my car almost to a crawl since I could see what looked like a couple of energetic black and white dogs prancing around in the road directly ahead. As I got closer, it became apparent that these were not dogs - but knee-high bouncy BEBEH GOATS. To use Cute Overload vernacular.

It was obvious that this pair of cloven hoofed cuties was running amok since a nearby barn door stood wide open. The owner was sweating heavily as he attempted to shoo them back to the barn with absolutely no success.

I stopped the car, not wanting to be the cause of a bebeh goat fatality. Besides, this was great fun to watch. The poor guy was alternately wheedling and yelling crossly at the sproinging little guys, and of course like kids of any species, they completely ignored him. He finally stopped dead in his tracks, and began running in the complete opposite direction that the goats were going. They trotted to a stop, looked at each other, then back at the owner and began to chase after him like crazy.

Pretty smart guy, I thought. And it turns out that he was: as soon as the two got within arms reach, he turned around and snagged them, sticking one under each arm. Once I was sure that their escape antics were safely over, I cruised over to the owner who was doggedly making his way back home and rolled down my car window.

CUTTTTEEEEEEEE! I squealed. I couldn't stand myself because those two babies were just about the most irresistible things I had seen in years.

He stopped and shoved the pair towards my car. "Want 'em?!" he laughed.

Oh, hey. Don't tempt me. How old?

"Six weeks. Six looooooong weeks!"

Can I pet one?

"Oh, sure. They're friendly."

And they were. They bleated absolutely adorably as they swung from the owner's arms. I stroked their sweet little faces and wished more than anything that I could have a couple of BEBEH GOATS all of my own.

Then realized that if push came to shove - it would either be John or the goats in my life since John has made it abundantly clear that a goat would not ever be living on any property of his. I decided that even though I loved those two little critters, I liked John better.

I reluctantly gave the pair a final pat, thanked the heavily perspiring owner, and rolled along the road towards home. Sigh.

Thursday, May 14, 2015

Sjogren's Syndrome Foundation Education Sheet: Insurance Reimbursement Tips for Dental Care

The SSF Sjogren's Quarterly Spring 2015 issue contains an excellent new Patient Education Sheet. To see other SSF Patient Education Sheets, check my left sidebar using a non-mobile device, or visit the SSF site here.

Patient Education Sheet
Insurance Reimbursement Tips for Dental Care

Ever since dentistry split from medicine, insurers have looked at dentistry as being sole confined to the mouth. Because Sjogren's is a systemic disease that affects the mouth, patients and their professional caregivers often have faced extreme frustration in obtaining reimbursement for care. This becomes even more difficult when trying to obtain reimbursement for care under regular medical insurance as compared to dental insurance. 

Basic Dental Care Reimbursement Tips for Any Kind of Insurance
  • See tips for reimbursement for medical care in SSF Patient Education Sheets on Health Insurance Tips Parts 1 and 2. Many of these are relevant for obtaining reimbursement for any kind of healthcare.
  • Read your insurance policies carefully. Know what they will cover, will not cover, and what is not explicitly stated. The latter can provide a window for pushing for coverage. Be prepared to prove that your treatment qualifies for coverage under your plan.
  • Always appeal a denial!
  • If denied, find out what led to the insurer's decision, and keep a careful paper trail. Mail your appeal certified with return receipt to document that your appeal was mailed within the specified time frame.
  • The appeal claim address might be different from the submission address, so check carefully.
  • In all corresponding documents, include: date, claim number, date of service, subscriber number, group or policy number, amount of charge, and dental provider name. In addition, describe the denial, why you are writing, and what you are requesting, Ideally this initial letter should be clear and concise. Templates are available on line to help with wording if you need to do the appeal yourself.
  • Do not send original radiographs, as they might get lost.
  • Provide a cost-benefit analysis when possible - For example: the cost of having more frequent dental check-ups and cleanings when someone has a dry mouth can save the insurance company the much higher cost of obtaining fillings, crowns and/or implants.
  • Remember that you are the client and pay for your insurance. Don't be afraid to place the insurance company on the defensive and make it clear that the company must justify its refusal to cover what should be deemed medically-necessary care. Stress the medical repercussions if you do not get the care you need and the potential negligence on the part of the insurance company if you do not get that care.
  • A common insurance phrase when considering reimbursement charges is "usual, customary, and reasonable" or "UCR." This can be extended to include the care required for a Sjogren's patient. The SSF Clinical Practice Guidelines for Oral Care and Management can be cited to prove usual and customary care.
  • Provide a Letter of Medical Necessity. A Sample Letter of Medical Necessity for dental treatment can be found on the SSF website under "Brochures and Resource Sheets."
  • Include two or more articles from respected dental or medical journals backing your claim of medical necessity.
  • Refer to the SSF website and the SSF brochure on Sjogren's and Dry Mouth as an authoritative source of medical information on Sjogren's. 
  • If you do not already have dental insurance, consider obtaining it.
  • Be persistent but friendly, and document all of your interactions.

For more information on Sjogren's, contact the Sjogren's Syndrome Foundation at:
6707 Democracy Blvd, Suite 325, Bethesda, MD 20817 
800-475-6473   ssf@sjogren'

Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients.