Pause and Refresh

Our little jaunt is going alone swimmingly. Today I'm going to take some time to just kick back and relax.

See y'all tomorrow.

I Really Need One of These

Guys. It's pretty amazing what a few pain-free days will do for a person. Well, specifically for this person, anyway. I am enjoying not only the relief but what seems to be an attitude change as well. I feel more optimistic. Like anything and everything is possible.

But my expectations for the results of this epidural are seriously getting out of control. How do I know this? Because I made John stop the car so that I could look at a motorcycle sitting by the road with a for sale sign on it.

What a little beauty. Just looking at it made me want to hop on it, give the kick start a go, and zoom off. It was a small motorcycle just slightly larger than the one from my youth.

Back when I was a teenager, I used to ride one exactly like this while wearing a sparkly gold helmet that matched the bike's paint job:

Awesome vintage ad found here. 

Oh, man. I loved that motorcycle. Dad bought it for my sibs and me with the idea that it was to be used for practical things like checking fence lines and running in to the local tractor supply to pick up small parts, etc.

Yeah. Right.

We did do those things on our beloved Yamaha Enduro, but mostly just drove the heck out of it. We had the perfect place to do it, too: Dad owned a couple of farms that adjoined and had miles of what we called "lanes" which were basically dirt roads on the property. And when I got my driver's license with a motorcycle certification, all the country roads in the area were suddenly all mine as well.

Sigh. What fun. Even though I had brothers and sisters, this zippy little gold-colored bike usually had my fanny on the seat. My older sister took a tumble on it once and wasn't thrilled with motorcycling after that, and my brother quickly decided that it was a wimpy bike and bought himself a big old Honda. Pffft. Whatever. I thought my little Yamaha was just perfect.

Fast forward to the present, when a plus sized, 56 year old woman riding a euphoric wave of nostalgia imagines herself astride a similar motorcycle, zooming around our little town. Can't you just see it?

Hoo boy.

What a fun little daydream that is...... ah, but it's time to come back to reality, Julia my girl.

Someday I'll buy my grandkids one.

It's All Good

Ahhhhhh. Thank you, thank you, whoever developed the steroid epidural. 


That is all. Carry on, people.

Open Notes? Absolutely.

Figure from Open Notes study illustrating access to doctors' notes found here. 

I enjoy reading Dr. Fred Pelzman's blog over at MedPage Today. Read this from MedPage Today:

Fred N. Pelzman, MD, a primary care physician at Weill Cornell Internal Medicine Associates, writes a weekly blog for MedPage Today, and in his spare moments he reads about what's going on in the world of primary care medicine. Take a few minutes to check out Pelzman's Picks -- a compilation of links to blogs, articles, tweets, journal studies, opinion pieces, and news briefs related to primary care that caught his eye.

His Pelzman's Picks interest me, and one link from yesterday was particularly engaging entitled When Patients Read What Their Doctors Write  and published on NPR's health news page. Here's a snippet:

The woman was sitting on a gurney in the emergency room, and I was facing her, typing. I had just written about her abdominal pain when she posed a question I'd never been asked before: "May I take a look at what you're writing?" 

At the time, I was a fourth-year medical resident in Boston. In our ER, doctors routinely typed visit notes, placed orders and checked past records while we were in patients' rooms. To maintain at least some eye contact, we faced our patients, with the computer between us. 

But there was no reason why we couldn't be on the same side of the computer screen. I sat down next to her and showed her what I was typing. She began pointing out changes....continue reading here. 

The author of the piece, Dr. Leana Wen, an attending physician and director of patient-centered care research in the Department of Emergency Medicine at George Washington University, went on to comment about the concept of giving patients access to the information in their charts, specifically the doctor's documentation about a visit or exam. You can read more about this practice inspired by a study published in the Annals of Internal Medicine in 2010 conducted by a team of physicians and nurse researchers here: Open Notes: Doctors and Patients Signing On:

Few patients read their doctors' notes, despite having the legal right to do so. As information technology makes medical records more accessible and society calls for greater transparency, patients' interest in reading their doctors' notes may increase. Inviting patients to review these notes could improve understanding of their health, foster productive communication, stimulate shared decision making, and ultimately lead to better outcomes. Yet, easy access to doctors' notes could have negative consequences, such as confusing or worrying patients and complicating rather than improving patient–doctor communication. To gain evidence about the feasibility, benefits, and harms of providing patients ready access to electronic doctors' notes, a team of physicians and nurses have embarked on a demonstration and evaluation of a project called OpenNotes. The authors describe the intervention and share what they learned from conversations with doctors and patients during the planning stages. The team anticipates that “open notes” will spread and suggests that over time, if drafted collaboratively and signed by both doctors and patients, they might evolve to become contracts for care. [Bolding mine] Continue reading here. 

I would agree completely with the team's anticipation of a shared plan of action which includes input from both clinician and patient. One of the reasons this study and it's commentary caught my interest was the fact that this is how my rheumatologist Dr. Young Guy conducts all of our visits. I can read the text of his entries into my chart online soon after the visit. My new internal medicine physician does this as well. If I have trouble recalling exactly what was discussed, the doctor's note appears in my after visit summary that I can view online or receive a paper copy when I leave the appointment.

I appreciate this now more than ever. I do view my medical care as a collaborative process and I never have to wonder how I am being assessed and what conclusions and plans are reached by physicians and other health care providers since it's all there for me to see. Most of my lab and test results are there as well, and if they're not I know that I will be receiving a phone call explaining the results with a follow up letter stating the same info.

Not all physicians in my medical services provider system follow their example, however. I'm delighted that my doctors do -- and I hope that others see the benefit of active patient involvement and will begin sharing their documentation as well.

Does your physician enter information about your visits on a computer in the exam room? Are you able to see and discuss what is being entered in your medical record? And if not.....

.....are you considering asking why not?

This is Good

The folks over at the pain clinic LOVE those plastic ID bands, for which I'm grateful. One has my name and information, the other my drug allergies. AND they marked the correct butt cheek with a sharpie indicating "x marks the spot". Excellent identification, people.  

Yesterday's epidural went swimmingly and as I write this I'm lounging comfortably with an ice pack propped behind my back. Nice.

John is relieved and happy that it went well, as am I. He's decided that we need to celebrate my pain-free tushie by putting it -- and me --- into Goldie and head out over the long holiday weekend on one of our famous meandering getaways.

I can support that idea wholeheartedly.  The ahhhhh factor registers consistently high on the John-and-Julia-rest-and-relaxation-meter after trips like these. So after a day or two of rest and ice and assuming that my recovery continues uneventfully, we're throwing some ice packs, water bottles, our luggage, my favorite travel sized pillows and snuggly blankies, hat and sunscreen, and a Garmin updated with the latest map information for the continental US into the car and begin a new adventure.

Destination? East. After that, who knows? Anecdotes and pictures to follow. Woo hoo! I get a mental boost of positivity when we scrutinize our road atlas planning potential destinations and points of interest. We debate the merits of various snacks and drinks to include in the car and I download several audio books for the journey. We love planning these things almost as much as actually participating in them. Almost. Because if I have a pleasant outing looming in my near future, the anticipation tends to put a rose colored tint to my emotional glasses. Yeah. This makes me happy.

When people ask me how I can keep a somewhat healthy attitude after dealing with the long course of my disease, I tell them about events such as these. I know that I am incredibly blessed that John actually likes hanging out with me for days on end cooped up in the car; and that he has a job that allows these types of outings; and that so far we have returned from our trips still liking each other. Excellent.

Many years ago as a staff educator for caregivers in an Alzheimer's facility -- dang, I still miss that job -- one of the classes that I taught dealt with mental illnesses including depression. I often find myself thinking back to the curriculum for that class provided by the state. It contained some really good information regarding these diseases and the medications used to treat them, but more importantly it also included behavior modifications and strategies to minimize the severity of depressive symptoms. One of these strategies that had great success was planning positive events and to encourage the patient and their caregivers to follow through on that planning.

It was good information and advice not only for those with diagnosed depression; but for all of us regardless of the type of our challenges.

Pleasant events in the future for anyone out there? I recommend them highly.

Third Time.....is the Charm?

Image found here. 

Well guys, by the time y'all read this I'll be back in the pain clinic having my third epidural steroid infusion into my L5 vertebrae area.

I'm hoping that I get results similar to my last one: I had good pain relief that lasted for about five to six weeks, which is pretty typical of a successful epidural. I've been cautioned that this is my last for the year. Not sure how a year is defined; I'll have to get that clarified. But in the meantime, this infusion is staving off that surgical consult.

The results of my most recent MRI (last Saturday) and my response to the epidural will be the deciding factors in whether my physiatrist hits the "send" button on that request for me to see a surgeon.

It will be an interesting week. I'll keep you posted.

Taking a Breather

I'm resting up after our adventures yesterday. In the meantime, I thought you might enjoy this lovely picture that was shared on the Sjogren's Syndrome Foundation Facebook page. Doesn't looking at it make every muscle in your body relax?

Ahhhhh. I can't wait for fall.

Whoops

Someone pointed out that I didn't include a picture of the results of our adventure yesterday. So here you go. My bad.

 

Galavanting

I just love that word.

Gaaaaaaal-ahhhhhh-vannnnnnn-ting. It rolls off the tongue nicely, doesn't it?

Galavanting is the perfect word to describe what John and I did yesterday. He loves a quest, and so do I. Here's his latest.

You may recall that the Bearded Dog Pub, formerly known as that big room over the garage previously used as Son's bedroom, sports a kegerator. What's a kegerator, you ask? Here's the definition as described by Wikipedia:

Kegerator is a residential draft (draught) beer dispensing device. A keg, typically of beer, is stored in a refrigerated container in order to keep the keg chilled. The user is able to maintain a tapped keg in such a device for extended periods of time, usually a couple of months, without losing any quality in the taste of the beer. A kegerator may be purchased in its finished form or built from a re-purposed refrigerator or a freezer with special equipment. A Kegerator is sometimes used in a Man cave, or more rarely, a woman cave.

I like the woman cave part. .::snort::.

Hell will freeze over before I devote any time or effort to an appliance dedicated to beer.

But it's a fun project for John. We put a sixth of a barrel in ours, which lasts for varying amounts of time depending on how often Greg and John host dart tournaments up in the pub. John takes an enormous amount of time debating the merits of various local craft breweries, and once selected, purchases a tap handle from the brewery as well.

Because the tap handle should match the keg, for cryin' out loud.

This particular keg contains Pelican Brewery Surfer's Summer Ale. Our search for the Pelican Brewery's tap conveniently shaped like a pelican was successful thanks to the obliging staff. We took the scenic route home feeling quite smug.

Overall a very relaxing day spent leisurely driving with the hubs. Brilliant. 

Beautiful

I'm learning to appreciate two times of the day that I had previously ignored: sunrise and sunset. I used to look at a sunrise and while enjoying it's beauty, was impatient for the sun to rise higher in the day so that I could get out and about under it's rays. And as the sun went down, I considered my day over.

Not so any more.

Now, I view the rising and setting of the sun as two safe times to enjoy the sun's brilliance without feeling the need to shield myself with hats, scarves, and long sleeves. Ahhhh. Freedom.

Block Those Rays

I remember several years ago when I first realized that it was important to me to protect myself from the sun. I wigged out when I took a closer look at sunscreen ingredients:

After last week's jaunt into the desert and sunshine, it's obvious that my photosensitive skin that has been lulled into submission by the Pacific Northwest's cloudy winter is re-emerging and is cranky as heck. 

I need to get serious about using sunscreen. Every day. No excuses. Or I'll find myself dealing with a repeat of last summer's ridiculously difficult splotch/hive episode. 

So I'm on a quest to find a sunscreen that effectively blocks both UVA and UVB radiation, yet isn't laden with chemicals that could potentially create more problems than it prevents. As with most of my quests lately, this is proving to be a very complicated process. 

Nothing is simple in Julia Land.

Too true. It wasn't simple. Soon after writing this post, I embarked on a mission to find a safe, natural and effective sunscreen. After realizing what a difficult task that was, I gradually decided that I would use a commercially produced one but sparingly.

How times have changed.

These days, I buy gallons of this:

You can buy your very own here. Be sure to choose the Sjogren's Syndrome Foundation as a charitable donation recipient on Amazon Smile. 

I apply it generously and often and on any part of my body that may have a chance of seeing sunlight. I swear if it were possible, I'd take a bath in this stuff.

It amazes me how incredibly sensitive my subacute cutaneous lupus erythematosis rash is to sunlight. A few days ago, I had meticulously applied lotion sunblock to my face and neck, but forgot to use the spray version to cover my arms and legs. I hopped into the car feeling smug and all UV protected, especially since I was wearing my hat and good sunglasses. But I let my left arm propped on the open window, which meant that where my 3/4 sleeve shirt left off, my unprotected skin began.

Later that day, I was irritated to see new lupus lesions beginning on my forearm. It took a minute or two to realize that I had forgotten a very important step this morning. Good grief. I think I was only in the car for about an hour, but what an effect that hour had on my arm.

I tend to use the Neutrogena products because they're unscented and seem to stick around on my skin longer than other products. (Wish I were reimbursed in some way for saying that, but dang. Nope.)

You can read more about sunscreens and photo protection here and here.

What's your favorite sunblock?

Tufts Study Seeking Participants

Do you live near the Boston area? Willing to participate in a study evaluating a therapeutic mouthwash? If so, check out this information posted yesterday to a Sjogren's Syndrome message board:

Hi Sjogrens community.

I had a visit with my oral medicine specialist, Dr. Athena Papas at Tufts dental in Boston yesterday. Dr. Papas has been at the helm of the Biotene challenge to get the company to make the product suitable for those of us with dry mouths. Last October she flew to England to personally meet with the reps from the company. Now the long awaited response is in action. Dr. Papas is heading the research to develop a high quality product which will work for us. To complete the required research phase she needs to sign up 110 participants. She only has 30 and the clock is ticking. Please go to this link and volunteer. (Your parking is paid by the study) http://tinyurl.com/SjoBostonMouthwash

Dr. Papas is a specialist in oral medicine and understands well the issues Sjogrens patients experience.

Thank you,
A Sjogren's patient (and have no interest in this study other than as a consumer myself)

Tufts University School of Dental Medicine

Dental Research Study

Do you have dry-mouth or a diagnosis of Sjogren's Syndrome?

We are seeking volunteers for a study to evaluate an experimental mouthwash.

Participants must be at least 18 years old and are eligible to receive up to $200 in gift cards for completing participation in the study.

Contact

Dr. Athena Papas at 617-636-3934

Athena.Papas@tufts.edu

or

Liz at 617-636-3931

Elizabeth.Tzavaras@tufts.edu

Coordination of Care is Long Overdue

Image found on Centers for Medicare and Medicaid Services site. 

MedPage Today put up a link to an interesting read yesterday. Dr. Fred N. Pelzman,  a primary care physician at Weill Cornell Internal Medicine Associates, blogs about news in the world of medicine. His recent post, Pelzman's Picks: Interesting Reads in Primary Care included a link to a New York Times article entitled Medicare to Start Paying Doctors Who Coordinate Needs of Chronically Ill Patients.  Here's a sample but head over to read it all:

WASHINGTON — In a policy change, the Obama administration is planning to pay doctors to coordinate the care of Medicare beneficiaries, amid growing evidence that patients with chronic illnesses suffer from disjointed, fragmented care. 

Although doctors have often performed such work between office visits by patients, they have historically not been paid for it. Continue reading here. 

This surprised me. It never occurred to me that these physicians who choose to do the right thing in overseeing all aspects of chronically ill patients' care would not be reimbursed.

It's about time that:

• providers and insurers recognize the complex needs of chronically ill patients AND
• these physicians are reimbursed. Although the monetary amount is minimal ($42 per month and the patient picks up a portion of the cost). 

I think this is money well spent for these vitally important services:

As part of the new service, doctors will assess patients’ medical, psychological and social needs; check whether they are taking medications as prescribed; monitor the care provided by other doctors; and make arrangements to ensure a smooth transition when patients move from a hospital to their home or to a nursing home.

It's an all-day event.

It's kind of pathetic that this is actually an improvement over  the last couple of weeks. 

Today I am taking my rash over to see Dr. Young Guy. I suppose I should take the rest of me as well...

I'll let you know if we come up with a new and improved plan of action. See you tomorrow.

At the Beginning.....

Image found here. 

I recently received an email from a young man who is in the diagnostic process. He asks:

"....I'm in some uncharted territory and just want to make sure that I am properly prepared for my appt. Also was wondering what to expect. What typically happens on first visit? Will any treatment be started before test results come in? Any advice you have for me would be greatly appreciated."

Here's basically what I told him:

A few suggestions:

• If you have any copies of previous labs and diagnostics, bring them along, especially if you have a visit note from your visit with the doctor that suspected SS. Don't scramble to get this if you don't have them, however. Just be prepared to summarize the results. 
• Put together a timeline as best you can that outlines when your symptoms started and any other medications or procedures that you have had prescribed in an attempt to treat them.
• Try to prioritize your symptoms. Often, we show up at our appointments and have dozens and dozens of problems which are really hard to address in one visit. Concentrate on the biggies. 
• Typically, if autoimmune disease is suspected, the rheumy will order several blood tests which look for specific auto antibodies (ANA titre, SSA/SSB, and several others) and tests that look at your overall inflammatory status such as a C-reactive protein or sedimentation rate. They may also order a lip biopsy looking for specific changes in the moisture-producing glands, and some tests that measure dry eye. He/she should also do a fairly comprehensive physical exam. 
• My rheumy does not prescribe any of the first line medications used in Sjogren's until you have a diagnosis, because these meds have some potential side effects. You may have to wait for the tests results to come and and a second appointment with your doctor. This is hard. I hate waiting. Especially if one is feeling pretty crummy and anxious.

Do y'all remember your path to diagnosis? I'll bet you do. If you have any additional advice or suggestions please add them in the comments below. 

A Wonderful Day

Well, yesterday I attended Terese's daughter's wedding.

Sniff, sniff. .:: honk ::. What a beautiful bride....and handsome groom....

I'm resting up today. See y'all tomorrow.

Boing Boing

See that? Yes. That is indeed my tushie resting on an exercise ball. And yes, that is a picture of me with my tushie in a recliner LOOKING at my exercise ball; because I want to be certain to use it properly and not cause more harm than good. I've send a message to my physiatrist and my physical therapist to schedule some serious exercise ball training. 

Please note also that my white pants are once again un-goobered. Woo hoo!

Why an exercise ball? I'm trying very hard to investigate all sorts of exercise options that I hadn't considered before, and the idea of a ball that provides a "boing boing" sensation sounds appealing to me. I'm encouraged by my body's response to several consecutive days of using a recumbent exercise bike as well. I fully intend to get back into our community center pool, but dang. It is closed for yearly maintenance for the next two weeks. But after it's completed, I'll be there with water shoes and flamingo beach towel at the ready. 

Thanks for all the inspiration and suggestions for exercise sent my way. They're all goodies. 

Thank You, Amy and Cole!

You may recall the winners of our art contest awhile back. It was the mom/son duo that produced our now-famous Sjogren's mascot Super Hydrating Nixie, the water sprite. Our Nixie is so super that she even represented the Dallas/Fort Worth SSF support group in a Walkabout!

I think Nixie's creators are super, too. I got a large white box in the mail the other day, and was delighted when I opened it to find Nixie in all her glory on three t-shirts, a fab hat, a water bottle, and even one of her red capes!

Oh my gosh!!

I immediately talked Daughter #2 into modeling one of the shirts, which she did with the promise that I wouldn't show her face. Since she didn't have any makeup on. Pffft. (All moms are certain that their lovely daughters don't need makeup anyway......but I digress).

Notice the flying action of the cape provided by Son-in-law? Ooooo.

And the card! Check out the card! Is that perfect, or WHAT?

Thank you, guys. You made my day.

"I'd Become an Athlete," he says.....

You can buy your very own refrigerator magnet with above image on etsy, here. 

I want to thank everyone that sent their condolences regarding my dumb stupid back issues.

Y'all are great. You really are.

So I have to share one part of the conversation from yesterday with Dr. Mike. Yes, that's how he would like me to address him. He has one of those last names that "everyone gets wrong, so you may as well use my first name."

Sure thing, doc.

After we discussed treatment options for my lumbar spinal stenosis and he dropped the S-bomb on me (Surgery?! Are you KIDDING me?) and I picked my jaw up off the floor, I asked him, "If you were me, what would you do?"

He said, "I'd become an athlete. Seriously. It's the best thing you could do for all of your health problems."

Become an athlete. Me. An athlete?

Some people have a love/love relationship with exercise. Some a love/hate relationship. I have a hate/hate relationship. I've always tried to make some kind of exercise part of my life but I can't say that I've ever really enjoyed any of it.

Well, except bobbing around in a pool, but that doesn't count since all I do is float aimlessly on my back with arms crossed over my belly. One doesn't burn any calories just daydreaming while looking at the pool ceiling.

Sigh. I guess it doesn't matter whether I love it or hate it: but the time has come to push myself a bit more toward a fitness goal of some sort. I'm going to get back on my recumbent exercise bike today and ponder this: What could possibly turn Julia into an athlete? Tai Chi? Swimming? Hm. I think I need to investigate these and any other exercise options.

Ideas?

Another MRI...

I love the Savage Chickens. Found here. 

Well, guys. I knew it was inevitable, but I'm still a little bummed that the pain relief that I have obtained from my most recent epidural steroid injection for spinal stenosis has worn off. But it has. So I dutifully appeared at my physiatrist's office for a follow up appointment yesterday.

At my visit, my doctor told me a few things: that we can repeat the epidural, that I need to lose weight, that he would like to see another MRI to assess if there have been any new changes in my back, and.......that surgery may be an option eventually. Ew.

I'll be getting my epidural in two weeks and I can't wait. Love that pain relief... The MRI will be scheduled soon and the surgical consult will be made depending on the results of my tests. Which will almost certainly show that my insides are full of "blood and bones and organs". Disgusting, yes.

Super Skies

Were you able to see the supermoon last night? We had a perfect evening to sit outside and watch the moon rise. Amazing.

Dr. Sarah Schafer: Part Three -- Uncovering Other Medical Causes of Fatigue

Today's post contains the third installment in Dr. Sarah Schafer's series of articles which address the complex topic of Fatigue in Sjogren's Syndrome. Part three examines other medical causes of fatigue.

PART 3:  Managing Sjogren’s Fatigue in Sjogren’s 

by Sarah Schafer, MD

Uncovering Other Medical Causes of Fatigue

Sjogren’s in and of itself causes significant fatigue in most patients. Some people experience profound fatigue on a daily basis. Unfortunately, many doctors are not up to date on this information, or on Sjogren’s in general. My rheumatologist told me early on that despite classic Sjogren’s symptoms, I must have CFIDS (Chronic Fatigue Syndrome), because Sjogren’s does not cause severe fatigue. He has since changed his tune.  

That being said, it is important to uncover other causes of fatigue, since many of them are treatable. The following is a list of common medical issues associated with Sjogren’s that may cause fatigue. This is not a complete list, but it is a good start.  

1. Thyroid disease. 15% of Sjogren’s patients have autoimmune thyroid disease, usually Hashimoto’s Thyroiditis.
2. Screen routinely, and consider re-testing if you develop increased fatigue, cold intolerance, hair loss or other symptoms of hypothyroidism. Grave’s disease less frequently occurs, and usually causes hyperthyroid symptoms.
3. Celiac disease is thought to affect about 10% of Sjogren’s patients. Fatigue is one of the many symptoms. Celiac may not present with classic GI symptoms. A TTG antibody test is highly sensitive and specific. You must be eating gluten for the test to work. If positive, a small bowel biopsy is usually obtained for confirmation. More on non-Celiac gluten sensitivity in a later section. 
4. Anemia: There are many types of anemia, so it needs to be evaluated in order to treat it properly. 
5. Severe obesity: If you are carrying around an extra 100 or 200 pounds, this will certainly add to fatigue. Note, mild overweight may not be a bad thing. It reduces osteoporosis, and the risk of fractures, among other things. Be kind to yourself! With the help of caring professionals, figure out the best way to address this problem without creating great stress to your body.
6. Recurrent or persistent infections, such as sinusitis, cellulitis, frequent colds, etc. These take a toll on the body and overall health.
7. Organ system involvement: This occurs in 20-40% of primary Sjogren’s patients. Examples:  interstitial lung disease, autoimmune hepatitis, primary biliary cirrhosis, vasculitis, others.  These need specialty care.
8. Chronic pain.This is a huge, complex and important issue, not in the scope of this discussion. 
9. Sleep disorders are extremely common. It is important to rule out sleep apnea, especially if you have daytime sleepiness. If your internist is not well versed in evaluating sleep disorders, see a sleep specialist.  
10. Fibromyalgia (FM) and irritable bowel syndrome can occur, but these are over diagnosed in Sjogren’s. Many Sjogren’s patients are initially diagnosed with FM, irritable bowel, or both.  Sjogren’s itself causes muscle pain, fatigue and bowel dysmotility.  Recent studies estimate 5-10% of Sjogren’s patients meet the clinical criteria for FM. Irritable bowel syndrome is highly prevalent, but symptoms may be due to small fiber neuropathy or the autonomic dysfunction often seen in Sjogren’s. 
11. Alcohol abuse and other addictions. If you have an unhealthy substance use pattern, get help!
12. Depression. This is a can of worms. Many experience depression, ranging from mild to severe. Major depression can cause fatigue and a sense of profound physical heaviness. This needs specialty evaluation and management. However, do not let your doctors tell you that all of your fatigue is due to depression, even if part of it is. 
13. Menopausal hormone fluctuations. Like depression, this is a complicated topic. Once again, even if this a contributor, it is unlikely to be your main source of fatigue. 
14. Other autoimmune diseases. Polyautoimmunity is very common with Sjogren’s. Sjogren’s may co-exist with lupus, rheumatoid arthritis, systemic sclerosis (scleroderma), sarcoidosis, psoriasis, amyloidosis, and others. These autoimmune diseases have their own treatments, some of which may help Sjogren’s symptoms also. I agree with the Sjogren's Syndrome Foundation and Sjogren’s experts: Get rid of the term “secondary Sjogren’s”, and just call all the diseases by name.  
15. MCS -- Multiple chemical sensitivity. This condition is fairly common in Sjogren’s patients, although rarely recognized by western doctors. Dryness and reduced surface immunity of the respiratory tract, eyes, sinuses, etc. create a poor barrier to toxins. Reactions to fragrances (including chemicals lingering in common laundry products), smoke, volatile organic compounds (paint etc.) can make you feel sick and fatigued. Sensitivity reactions often increase over time. Chemical sensitivity may occur when you don’t notice an odor, or even if you like the scent. Often the reaction is delayed: You may notice hours after a crowed social event that you feel horrible. Some of this may be due to environmental exposure. 
16. Migraines: Several small studies have shown that 50-88% of Sjogren’s patients get migraines.  Most significant headaches are migraines. 85% of migraines are the common type. Common migraines do not produce the aura or visual symptoms that are characteristic of classic migraines, the other 15%. Both types of migraine cause fatigue, before, during and after the headache. Migraines are a whole body phenomenon, not just bad headaches. They can last for hours or even days. Getting adequate treatment can greatly reduce suffering.
17. Postural Orthostatic Tachycardia (POTS) and other cardiovascular autonomic nervous system dysfunction. I mentioned these in Part One. Poor automatic regulation of the heart rate and blood pressure is quite common. The actual number of affected patients is unclear, since no one has ever done a study to look at the prevalence of this in Sjogren’s. A large survey in the UK showed all dysautonomias lumped together affect 55% of primary Sjogren’s patients. This result was based on self-reported symptoms. Many were cardiovascular autonomic symptoms, but better studies need to be done. If you get dizzy or light headed when standing quickly, get tested. It takes a knowledgeable doctor (Ask: Do you know how to diagnose POTS?) and more time than allowed in a typical medical appointment to diagnose this.  

Why is this important?   There are specific treatments for POTS and many related conditions.   Good management can greatly improve quality of life.    

I want to thank Dr. Schafer for her willingness to expend the considerable time and effort required to create this excellent series. As everyone with Sjogren's knows, projects such as these tap into an already burdened energy supply.  So for all of us who will benefit from her generous efforts in sharing her knowledge and personal experience, I want to express our gratitude.

I will post links to all three sections of this series on my sidebar, which can be seen when viewing Reasonably Well on non-mobile versions of this blog.

About Those Cookies.....

Gee. I'm embarrassed. Awhile back, someone sent me an email asking for my macaroon recipe, and I completely forgot to pass the info along. Probably, because I didn't use a recipe to make them. I used refrigerated cookie dough:

Yup. These are the ones. 

They stayed in a very nice pretty shape after baking, and were easy to dunk in melted chocolate. They tasted fairly good, especially the day after they were made. But I have to say that if you like a macaroon cookie that tastes more like a Mounds bar, these wouldn't do. They definitely taste like a cookie-cookie,  heavy on the flour and sugar, and not particularly moist.

The from-scratch macaroon cookie recipe I use is from Alton Brown and can be found here. These cookies don't hold their pretty perfect shape as well as the refrigerated dough version; but they are moist and chewy and coconut-y:

Toasty Coconut Macaroons

One 14-ounce package sweetened shredded coconut
4 large egg whites
1/2 cup sugar
1 teaspoon vanilla extract
1/4 teaspoon kosher salt

Heat oven to 350 degrees F.

Spread the coconut out in a single layer on a half sheet pan. Bake for 15 to 20 minutes, stirring every 5 minutes, until the coconut is golden. Set on a cooling rack to cool.

Whip the eggs whites and sugar in a large bowl with a hand mixer on high for 8 to 10 minutes until stiff peaks form. Add the vanilla and salt. The egg whites and sugar can also be whipped in a stand mixer fitted with the whisk attachment.

Using a rubber spatula, fold in the toasted coconut.

Drop by the tablespoon onto a parchment paper-lined half sheet pan, leaving 1 to 2 inches around each cookie. Bake for 15 to 20 minutes or until golden brown.

Cook's Note: The outsides should be golden brown but the insides should still be moist.

Autoimmune Gal: Plaquenil

Autoimmune Gal has written a very good post discussing the results of a recent study that looked at the effectiveness of Plaquenil in the treatment of Sjogren's syndrome. Take a look:

For many patients with Sjogren's, Plaquenil (hydroxychloroquine) has long been the go to drug that their doctors prescribe.  It is often the first line of attack before other more aggressive therapies are added such as methotrexate or rituximab that have bigger impacts on the immune system.

The other day one of my favorite bloggers, Julia from Reasonably Well, wrote about how she's been feeling since discontinuing her Plaquenil. (*Aw, shucks.... -- Julia*)

"I can tell that my meds have changed. I had almost (but not quite) forgotten what these aches and pains feel like, but they're back…I am re-acquainting myself with those symptoms that it tames: the overall flu-like and feverish feeling -- aka malaise -- and joint pain." (Click here to read more).

I had a similar experience when I stopped taking plaquenil.  It was one of those situations where I didn't realize the medication was having such an impact until I stopped it.  My joint and muscle pain went up and my energy levels went down.  Did the drug eradicate my fatigue and pain?  No, but it did alleviate some of the symptoms and improve my quality of life.  I have been on enough drugs to know when one helps.

So I was very interested when I saw on Twitter this study presented at both the American College of Rheumatology (ACR) and the European League Against Rheumatism's (EULAR) annual meetings:  Inefficacy of Hydroxychloroquine in Primary Sjogren's Syndrome: Results of the Joquer Randomized Placebo-Controlled Trial in Primary Sjogren's Syndrome.  Yes, that's a mouthful, but for those of us with Sjogren's and on plaquenil, it's a subject that's pretty relevant.......continue reading here. 

I agree with AG's logic. I had read the abstract of this study as well but in all honesty, was frustrated with the authors' interpretation of the results, and decided that I needed to cool down a bit before I wrote about it.

Because I would sound all cranky. I don't write objectively when I'm hot under the collar.

So I'm glad that Autoimmune Gal has said it all so well: in a calm, cool, collected and logical manner. While you're over reading her post, be certain to also read the insightful comments that accompany it.

Probably Won't Happen Next Time...

Wow. It's a miracle. Last night I had goober-free evening wearing WHITE PANTS for a whole evening. And finishing up a lovely dinner with a slice of bright purple marionberry pie.

The pants remained pristine. Unscathed and unsullied. It's a miracle. A........Thursday evening miracle. I couldn't stop shaking my head in disbelief as I hung them up after getting into my jammies.

I'll take small victories every chance I get.

Sjogren's Syndrome Foundation: Walt Disney World Marathon, Half-Marathon, and 10K

Check out this latest fund raising opportunity for the Sjogren's Syndrome Foundation. I could certainly never consider participating physically, but I'll do my best to support it by promoting this event.

Have you participated in a Team Sjogren's event similar to this one? Was it a positive experience for you? Share!

Join Team Sjögren's as we head to the most magical race on earth! Come walk or run with us at the Walt Disney World® Marathon, Half-Marathon & 10K weekend on January 9-11, 2015! The Walt Disney World course will take you through Walt Disney World Theme Parks including Epcot and the Magic Kingdom before you finish a picture worthy finish back at Epcot, where you'll receive your Mickey Mouse finisher medal! As a team member, you will receive world-class training along with mentorship from past runners and foundation staff. Our team trainer and nutritionist will be there to help guide you and ensure you're ready to complete the 6.2 or 13.1 miles. If you're unable to run or walk in a race, consider recruiting someone you know to run or walk in your honor. To learn more, we have scheduled two information calls where you will hear from past Team Sjögren's members, SSF staff and our team trainer. We hope you will join one of our calls: Tuesday, August 19th at 12 PM EST Tuesday, August 19th at 8 PM EST To RSVP for a call and to receive our conference call number, please contact Caroline Mullin at cmullin@sjogrens.org.  Due to the popularity of the Walt Disney World® Half-Marathon & 10K, we have limited spaces available so sign up soon. If you can't join an informational call but want to receive more information about training and fundraising requirements, please contact Steve Taylor at  (301) 530-4420, x211 or staylor@sjogrens.org. Imagine the feeling when you cross the finish line at the most magical place on earth!

Part Two: Managing Sjogren's Fatigue by Sarah Schafer, MD

Here is the second in Dr. Schafer's series. The third and final section will be posted on Monday, August 11th. 

Medications and Sjogren’s Fatigue

By Sarah Schafer, MD

I recently reviewed the literature that covered medications and fatigue. First, for perspective:

• There are not many studies that include fatigue in evaluation of treatments for Sjogren’s. Other than the study showing high prevalence of disabling fatigue (70 %) in primary Sjogren’s, there were no studies that focused solely on Sjogren’s fatigue. That is rather alarming, if you think about the impact fatigue has on our Quality of Life.
• There are huge limitations with the studies that did look at meds and fatigue. None of them had fatigue as their primary focus, but fatigue was included as one of many parameters being studied. 
• Most of the studies were small. None were long term. Since our disease is very long term, with fatigue varying over long periods of time, this is a huge problem in study design.
• None of the studies looked at methotrexate or prednisone.  Only two studies looked at hydroxychloroquine (Plaquenil), and are inadequate to draw conclusions.
• Addendum:  Published in JAMA July 16, 2014:  A new large study in France looked at 120 patients with primary Sjogren’s taking Plaquenil and drew the conclusion that there was no improvement in fatigue, pain or dryness at 24 weeks. There was no note of the effect of stopping HCQ, and perceptions of fatigue. It is frustrating to read this study, because it was the largest study to date. The first problem is that 24 weeks is not adequate for this very long acting drug to take effect. The second problem is that most people experience such subtle change over a long period of time that only by stopping the drug do they realize that it was helping fatigue.   It does reinforce that this drug has limitations, including no “bells and whistles” improvements for most patients. 
• Some of the studies, while small, looked at the newer biologics. Most look like duds, although it is hard to draw conclusions on small numbers. However, rituximab (Rituxan) did show some promise.  Of course there are pretty serious side effects with this medication.

Here's my takeaway regarding the use of medications in the treatment of Sjogren's fatigue:   

(NOTE:  These are my opinions only. Do not substitute this for your own judgment or your doctor’s advice.)

1. If you are OK to take plaquenil (HCQ), decide for yourself if plaquenil helps. Studies are inadequate, but many find it somewhat helpful.
2. Use prednisone if you have to -- I have had complications that required it -- but if you can, try to keep it to short courses for flares. You can get off short term prednisone much easier than long term. Another consideration is low dose prednisone, which has few side effects but may alleviate fatigue caused by total body inflammation (3- 5 mg).
3. Consider methotrexate (MTX): I know many people who are helped by it, myself included. While an abundance of positive stories do not make a good study, there are no studies for MTX use in Sjogren’s. We are simply borrowing tools from other diseases. Use injectable (it’s easy!) for fewer side effects and more reliable absorption. And don’t forget to take folic acid supplements; your doc should know about this.
4. Stimulants are worth considering. Their use may require a trial and error period. Some people find Provigil or Nuvigil helpful, but they are fairly long acting, which can make it difficult to rest during the day. However, I would try other things first. Have all of your other fatigue causes been addressed? Often not. For example, if you have dysautonomia related fatigue, that needs to be treated. It is often overlooked, so think about getting tested for this, especially if you feel lightheaded or dizzy if you stand still for more than 5 or 10 minutes. I had undiagnosed, untreated POTS for years. I use very small doses of Ritalin to treat my POTS  which has the added advantage of stimulant effect. I only take 2.5 mg twice a day -- more than 5 mg makes me jittery. It is short acting, so I can rest in the afternoon after my morning dose has worn off.

Finally, have you really considered changing lifestyle to be more kind to yourself?  If you are super fatigued, you probably need extra rest, less work, diet and exercise changes (future discussion) versus going  into overdrive with meds.

In Which I Wah Wah Wah

My goodness. Image found here. 

I was relating all of my recent health bugaboos to my friend Sarah the other day. After reading the long list of gripes, she sent me an email that said, "Lordy, Julia! Bring on the locusts!"

Well. I think they've arrived. I'm thinking that in the biblical reference here to the ten plagues of Egypt , locusts were the eighth misfortune to be inflicted on the Egyptians. Good heavens. I certainly hope that frogs, lice, flies, diseased animals, and storms of fire don't follow anytime soon.

So the swarm brought with it one more thing to add to my stack of complaints.......the most recent is a urinary tract infection. Yay.

Wait. Is a large group of locusts a swarm? Apparently, it is. But I digress.

I'm exaggerating my discomfort, I know. UTIs are easily diagnosed and treated. And I have no problem taking antibiotics whatsoever. But it's just ONE MORE THING.

I think that the universe or God or whatever has decided that I need to learn another one of life's lessons: that I need a healthy dose of humility. Sunday evening as I was getting ready for bed, I despaired over my reflection in the mirror. The lupus lesions are fading extraordinarily slowly, and in the meantime, I'm losing hair on the scalp blotches.

Sigh. I'm disabled, foggy, plus sized, the owner of a bum knee and stenosed spine, limping along with
cranky trochanteric bursae, and I'm getting old. I'm covered in an entirely unattractive crop of red spots which has migrated from my trunk and arms to my neck, face, and now scalp. AND I AM GOING BALD. Well, kind of bald. In small patches. In just a few places. And I have a hammertoe and bunion. Wah. Wah wah wah.

And now my bladder is as cranky as the rest of me.

I can't drown my sorrows in a Butterfinger Blizzard from Dairy Queen, so I'll have to be content with sucking down gallons of water and bending the ears of y'all. Sorry about that.

Ah, well. This too shall pass. Right, guys?

Right?

I feel better already.

Fatigue Article Schedule

I neglected to mention in my earlier post which contained Dr. Schafer's fatigue article that the second of the three installments will be put up on Wednesday, Aug 6th, and the third on Monday, Aug 11th.

I promise.

Part One: Managing Sjogren's Fatigue by Sarah Schafer, MD

As promised, here is part one of a three-part article written by Dr. Sarah Schafer. These installments are part of a rough draft which, after continued work, would make a great book in my humble opinion. Please feel free to add your thoughts or contributions to the comment section below.

Managing Sjogren's Fatigue

by Sarah Schafer, MD

FATIGUE is a big topic, which I have researched extensively and continuously learn to manage in myself.

Donna V writes: “.....however, no one addresses the extreme amount of fatigue. I too, run out of energy mid afternoon. It does’t matter how little I exert myself during the morning, I often cannot go out to choir rehearsal at 7pm because I cannot force myself to get off my bed or to leave home. I LOVE to sing and even this activity requires more energy that I can muster. I also have significant fibro pain and just holding a hymnal is often more than I can bear. It also hurts my spine to sit in a chair. Family members cook supper and do the dishes because I am too fatigued to even begin a meal, too sore to wash dishes, it’s painful to lift the pans out of the cabinet, stirring food in a bowl is exhausting, etc.”

I too lived with this level of fatigue for years, sometimes so bad I was in bed 16 plus hours a day. No amount of sleep made a dent in it, and all of my careful eating, pacing, etc. did not help that much.

I started getting better a few years ago, although I have a long way to go. Here is my wisdom, based on research and personal experience.

The medical profession does not address fatigue due to lack of awareness (70% have disabling fatigue), and lack of tools, time and incentive to help manage fatigue. Fatigue in Sjogren’s poorly understood, but here are some causes:

1. The obvious: disordered sleep/sleep apnea, anemia, untreated celiac disease, terrible diet, morbid obesity, thyroid disease, migraines, medications, chronic pain conditions and other comorbidities (associated conditions).
2. There is good evidence that some sort of autonomic nervous system dysfunction (many types, including GI motility, CV, sweating issues) is present in most, if not all of Sjogren’s patients. Doctors have not caught on to this and do not screen for it. They do not know how to treat it. Cardiovascular versions such as POTS (postural tachycardia syndrome) and neurally mediated hypotension are fairly common (no numbers yet) and can cause enormous fatigue, dizziness and lightheadedness. No one screens routinely for these conditions—they have to become severe to be diagnosed, and even then the diagnosis is often missed. CV dysautonomias are often associated with migraine, which is actually a full body experience that creates great fatigue in addition to the headache and other symptoms. Managing CV autonomic dysfunction can help greatly.
3. I am convinced that part of the fatigue issue is due to an inflammatory process which affects the whole body; so anything that can be done to decrease this (a big discussion) can help fatigue. I sincerely hope that new pharmacologic research will help in this regard.
4. Stress: I hate this topic, because I think stress is highly overrated as a cause for fatigue. The biggest reason I am stressed is because I am so sick. However, I do notice that ongoing serious stress and major loss such as death or divorce can send me into deeper fatigue levels or auto immune flares. Also, being around depleting situations (for me large gatherings/loud noise) and “friends” and family members that drain you is not good.
5. Sun: Too much exposure to sun and heat can increase fatigue levels.
6. Fitness/conditioning: This is a huge topic, and I will address it in a later section. I view this similar to diet in that exercise needs to be customized, reasonable, and graded, with allowances for a great deal of trial and error. However, it does make you feel better when you find the exercise(s) that help.
7. Season: I do better in spring and summer. Also, mornings are my best time. Other folks have other patterns, although most people note more fatigue in the winter, especially with bad weather.
8. Once again, I want to note that Sjogren’s fatigue is not studied much and is not well understood. I have read every article on this topic I could find. There are not that many so this was not hard to do. This sorry state of affairs is also true for other types of autoimmune fatigue, which is a frequent debilitating symptom in systemic lupus erythematosis, multiple sclerosis and other autoimmune diseases. I would love to see more research in this area.

Teri P. Rumpf, PhD., co-author of The Sjogren's Syndrome Survival Guide wrote an excellent article about the types of fatigue we experience in The Sjogren's Syndrome Foundation newsletter The Moisture Seekers. You can read it here. I highly recommend reading it as a “prequel” to this discussion. I think her “crumple and fold” description as one type of fatigue fits with autonomic dysregulation and that baseline fatigue is quite influenced by an ongoing and active inflammatory process.

Others have commented on fatigue improving with GI symptoms getting better, which makes sense. Not all GI symptoms can be ameliorated by diet but this and other GI care is worth a discussion in the next article segment.

Weather has been mentioned: major storms coming through can affect fatigue. A hot and humid weather combination is simply not good when fatigue is already an issue. This is huge with cardiovascular autonomic dysfunction since heat causes dilation of the blood vessels in the extremities. Blood pools, less goes to your brain, and your heart has to pump harder. Therefore, you feel more wiped out.

In my next installment, I will take parts of this and talk about management and treatment. But as you can see, it is a most complex topic! Do you have feedback to share? What increases or decreases your fatigue?

*Note that the link to information regarding POTS has been updated. You can find part two: Managing Sjogren's Fatigue here, and part three: Uncovering Other Medical Causes of Fatigue here. --Julia*

Of Concern....

I've been following the recent Ebola outbreak in Africa with kind of a morbid interest. Though I have some confidence in the ability of the CDC to treat patients safely, the fact that the US now has one and potentially two patients in the country with active disease makes me distinctly uneasy. Which, in turn always leads to one of my favorite coping mechanisms: Googling like mad and reading for hours.

The Google-madly maneuver is also handy while I'm inside hiding out from the sun.

My latest search episode turned up a very simplistic but actually pretty darned good video found here, that explains how a virus infects a cell. I'm praying that there will be far fewer Ebola viruses infecting human cells in the near future. Take a look:

Breaking Up is Hard To Do

Good bye, buddy ol' pal.....sniff......

Guys. I'm going through a major relationship crisis right now. I think that one of my most favorite food buddies and I simply must part ways and it's not going to be pretty.

You know how I've been wah wah wah-ing about my cranky innards? And that I've been thinking that I just don't tolerate wheat, and fresh fruit, and vegetables?

Wrong.

I had it completely wrong. I tolerate all those things just fine and dandy. It's when I consume any kind of dairy product that things get messy.

Dairy. Me. A hay-seed farm girl that grew up milking cows in America's Dairyland. Who went to the bank during the month of June with my mom every chance I got because June is DAIRY month and they gave away free chocolate milk at the bank. Who considers ice cream a therapeutic food group. Who thought she couldn't live without cheese. Who.....

Well. You get the idea. Lactaid pills help me tolerate smallish amounts of milk and dairy; but the vanilla milkshake (large) that I inhaled yesterday just because Bev bought it specifically for me sealed the deal. I reluctantly came to the conclusion that there isn't enough Lactaid in the whole stinkin' universe to make a large milkshake and me happy at the same time.

WAH WAH WAH!

I know from hearing from all of you that food intolerances in Sjogren's is a very common thing; and I also know that often dairy is the culprit, so this should be no surprise but I'm still amazed that it took me months and months and months to draw this conclusion.

.::facepalm::.

But there's no denying that when I omit any and all things dairy, my insides are much happier. So there we have it.

How can I tell my PARENTS? Oh, the shame of it all........

It appears that I'm not the only sjoggie that had to go separate ways with dairy. Read this study entitled Cow's milk protein sensitivity assessed by the mucosal patch technique is related to irritable bowel syndrome in patients with primary Sjögren's syndrome published in Clinical and Experimental Allergy in 2008:

Introduction 

Patients with primary Sjögren's syndrome (pSS) are reported to have a variety of gastrointestinal symptoms partly attributed to an overrepresentation of celiac disease. We have observed that irritable bowel syndrome (IBS)-like symptoms are frequent complaints in this patient group. Allergic manifestations to various drugs are also common in pSS. A role of food allergy in IBS has been proposed.

Objective 

This study is aimed at evaluating the mucosal response to rectal challenge with cow's milk protein (CM) in patients with pSS and relates possible CM reactivity to their intestinal symptoms......continue reading here.