Get Your Awareness Bling Here

The Sjogren's Syndrome Foundation has offered a new product in their store: awareness bracelets. You can purchase them on their website, here, in packages of ten for fifteen dollars.

I like 'em.

Connecting With the World: The Benefits of Blogging

I love the wallpaper in our study. 

I wasn't asked to complete this online questionnaire, but it appears that the results mirror my experiences. Check out this interesting and very readable study published online October 23, 2012 in the Journal of Medical Internet Research:

Communicating the Experience of Chronic Pain and Illness Through Blogging
Reviewed by Nanhua Zhang
Pamela Katz Ressler, RN, MS, HN-BC, Ylisabyth S Bradshaw, DO, MS, Lisa Gualtieri, PhD, ScM, and Kenneth Kwan Ho Chui, PhD, MS/MPH

The words of a survey respondent, “First I was helped, now I am helping...a reminder that I am part of the world,” describe the experience process that bloggers in this project reported. Perhaps the process of communicating the experience of chronic illness and pain through blogging may be one method to assist in moving toward a more complete, holistic model of health and healing by allowing individuals with chronic illness and pain to regain a place in the world.

I have often urged others to join the blogosphere, for many reasons, most of which are listed in the above survey results. But in thinking about my motivation for slogging through my daily blogging, I hadn't considered what the authors so eloquently state above: ".....by allowing individuals with chronic illness and pain to regain a place in the world."

How true. With the onset of a chronic, life-changing illness, one of the biggest challenges that anyone faces is dealing with the isolation and withdrawal from what was once considered normal: friends, hobbies, jobs, and family. I can connect with others around the globe through my blog, and it's helped me find my NEW normal.

You can read the rest of this excellent study here.

If You Give Auntie Julia a Baby......

.......She will allow him to eat anything he wants.

More icing? Absolutely. And give some to Auntie Julia.

What ePatients Want Their Healthcare Providers to Know

In an earlier post, I asked my readers to respond to these questions:

• Do you consider yourself an ePatient? 
• If you were given an opportunity to help educate health care providers on this topic, what would YOU want your future nurses and doctors to know?

The responses that I received have been thoughtful, informed, and the result of positive interactions with others. In other words, my awesome readers exemplify the definition of an ePatient: Patients who are educated, empowered, equipped, and engaged in their care.

This response from reader Kate summed up what several email and comments conveyed:

TO PROVIDERS: 

1) Realize that people looking things up on the internet is the new normal.
What you must try to do as a care provider is distinguish between someone who has decided he has a rare disease based on his sore throat, and the more informed patient who is trying to make sense of competing information, various treatment options and is motivated to improve her health.
How can you do that?  Use tools you already have – ask questions and observe.  “Why” questions are particularly useful: “Why do you think you have this rare disease?” and followup questions “What are your symptoms, and how long have you had them?”
If the answer is that Dr Oz is really worried about the disease, you can feel comfortable proceeding to a more routine analysis, but if the answer has details about other tests that have been performed, or diagnosis that have been ruled out, then the patient is probably an engaged patient.
“Why do you think this drug make sense for you?” Again the answer helps you understand the though process, or the journey, that the patient has taken.
You have to use the power of detection that you use to help patients every day to figure out what is going on here. Ask directly if they have any ongoing health problems – people with recurring or chronic illnesses often have done a great deal information about the disease. 

2) Realize that the vast amount of conflicting medical advice in the media is very confusing to patients.
For example, just think about dietary advice – eat lots of carbs and whole grains, or wheat is bad for you so go gluten free.  Don’t eat meat, or eat high quality proteins, etc.
Sometimes when a patient is bringing you information from the internet, it’s because he is overwhelmed by the variety of advice out there. Be kind and helpful in giving your advice, and try to give a reason for why it’s the best choice for them. 

3) Realize that having drug side-effects online is terrifying.
That information was always on the drug packaging, but now that it’s in a font that is readable, it WILL scare the bejesus out people. You need to be able to help people understand the difference between the common side effects and the very rare ones.  And when they should call you if something doesn’t seem right. 

4) Be ready to listen, be open to new ideas.
When dealing patients that have recurring or chronic problems, understand that they may know their own bodies very well.  They may be able to detect the onset of an ear infection or a lupus flare before it can be detected clinically.
They may also be aware of newly approved treatments, or treatments in trial.  This doesn’t mean that this is the right course for them, but medicine is constantly changing.
Even it you don’t think it is the right course, don’t be dismissive of the option or more importantly of them!  Give your reason for your proposed course of treatment – “This works well for about 95% of the people with your condition, and it’s quite a bit cheaper. Let’s start with that, and look at other options if this doesn’t work.” 

5) Use the Internet to assist you.
 If you’re in a speciality, find sites with support groups for the problems you often treat, or organizations related to the disease: i.e Sjogren’s World and the Sjogrens Syndrome Foundation.  Your patients need not only your help, but support in dealing with their issues. I find mayo.com a great resource for overviews of heath conditions, broken down into information about a problem’s symptoms, diagnostic process and treatment. Use the internet to supplement your limited time by providing good resources to interested patients.

Thank you to everyone for providing such great quality input! I'm looking forward to including your suggestions to my panel presentation.

If you think of more -- keep 'em coming!

I Don't Want to be at the Eyeball.

We had big plans for the evening: dinner at a local fish house, watching a friend sing in Mozart's Requiem concert, perhaps an after-concert dessert and coffee....but.

I got as far as finishing my fish and chips when I felt that dreaded sensation that always precedes a crash -- an icy cold sensation on my face, followed by a drenching cold body-wide sweat, and the inexplicable need to get horizontal ASAP.

Dang.

We were quite a distance from home having carpooled with Terese and Greg, and when I realized that I was about to crash, I also realized that it would be stupid to ignore the warning signs, so I spoke up. "Guys. I'm really sorry, but..."

Within minutes, I was lying almost flat in a reclined seat in Goldie, and John and Greg and I were barreling north towards home. Crumb. This meant that all of our delightful plans were scrambled for everyone. Terese and her daughter did go to the concert, but the flying trip back home meant that John and Greg's plans were abandoned. And once John had helped me into my jammies and tucked me in for the night, he and Greg made the trip back downtown to retrieve everyone else after the concert was over.

AND NO PIE FOR ANYBODY. What a shame. What a party pooper I am.

I'm trying not to overreact to this adventure. I know that it's been at least four or five months since I had a crash of this proportion, and I'm guessing that there will be more in the upcoming eight weeks or so....but shoot. I suppose this means that I'm coming up on the eye on my mousie energy chart. Which means that the tip of his snout (and the lowest point on my graph) is also fast approaching.

I much prefer being right on the height of the mousie's back.

Driving in the Fog

photo mine

Here's an interesting question posed to me by a reader:

In my job I drive approximately 800-1000 miles PER WEEK.  The distractibility is a real issue.  But with fatigue and memory problems, so is staying awake and remembering where I'm going, how to get there, etc.  Therein lies my question - do you hear of others with Sjogrens who have to reduce their "normal" driving due to symptoms?  I realize that MY driving isn't anywhere near normal.  But I'm not convinced that it's the distance I'm driving as opposed to the symptoms I'm experiencing.

Wow. That is a lot of driving. Well, that is if you're not my husband, who can think of nothing better than to cover 1000 miles in a DAY, which is what we did last week. Twice. Crazy man. Crazy me for agreeing to go with him. But I digress..

Back to the question: Do you hear of others with Sjogrens who have to reduce their "normal" driving due to symptoms? 

Yes. Yes, I do. I can speak from personal experience as a matter of fact. Those symptoms that you describe as problematic: memory issues, distractibility, thinking and reasoning issues, are often described as "brain fog". You can read more about Sjogrens and brain fog here.

My first experience with a major brain fog episode happened while I was sitting behind the wheel of my car, luckily while I was parked. I looked at the dashboard and couldn't for the life of me remember how to put the car in gear. It was one of the more frightening experiences that I have ever had. There have been days when after venturing out onto the roads in Goldie, that I have realized that my driving skills were dangerous: I couldn't concentrate, my reflexes seemed slow, and it was hard to remember where I was going. So I turned Goldie towards home and abandoned whatever plans that I had thinking that nothing was worth risking an accident that would take lives.

And that's what it all boils down to, isn't it? Knowing yourself well enough to realize that your fatigue and brain fog is making your activities unsafe? My brain fog and fatigue were the symptoms that forced me to quit my job as a nurse since I felt as though my judgment skills were definitely not good when my fatigue was at it's worst, and since my judgment was vital to another person's medical care I couldn't justify taking any chances.

The big question is: WHEN does one cross that line between being mildly impaired to becoming unsafe behind the wheel? It's a big question, but one that only you can answer.

When I know that I need to do some serious driving, there's a few things that help, the biggest being managing my fatigue, since for me, when I am tired, I am STUPID. Seriously. So I try to get plenty of rest before a trip. I also have a prescription for a medication that helps me stay alert: Provigil. I use this drug sparingly since it seems to lose it's effectiveness if I take it routinely. You can read more about Provigil here.

Here's tips from the Sjogren's Syndrome Foundation regarding managing brain fog:
What YOU can do about Brain Fog:

• Manage your lifestyle to optimize your health and sense of well being.
• Develop a close working relationship with your doctor(s):
• Always report changes in cognition/memory and mood (depression, anxiety).
• Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
• Inquire about your hormonal status, thyroid function, and blood pressure.
• Additional actions:
• Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor.
• Minimize stress and anxiety
• Set realistic expectations
• Plan ahead
• Take breaks throughout the day
• Learn relaxation exercises and practice them at regular intervals
• Balance work and leisure
• Let yourself laugh
• Talk about feelings
• Limit multi-tasking and focus on one task at a time
• Reduce caffeine and alcohol.
• Manage effectively musculoskeletal and joint pain.
• Exercise regularly. Adequate physical exercise enhances cognition/memory.
• Train the Brain! “If you don’t use it, you will lose it.”
• Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally stimulating activities and establish new friendships and relationships.
• Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function.
• Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s syndrome, not the absence of any disease!

Have you experienced problems driving as a result of fatigue and brain fog?

Your Input, Please

I've been asked to be part of a panel discussion addressing student nurses next month, for which I'm honored. The topic of the discussion is Communicating With ePatients: Patients who are 'educated, empowered, equipped, and engaged' in their care, and here's how the organizer of this panel views the issue:

"Patients in this group may be proficient at online research, active in health-centric communities (on or off line), or medical professionals.  They may be caregivers who are versed in their loved one's condition or self-advocates.  They come to appointments with notes, questions, ideas, and detailed input, and expect to be heard and taken seriously.  They don't (as a rule) believe they know more about medicine, but that they do know more about themselves.  They typically have chronic issues and want to partner with their medical team in their ongoing care plans.
Often times, their educated presentation backfires.  Chronic pain sufferers who know which medications will or won't work, claim allergies to a lesser medication right away, or come in the door asking for something by name are labelled drug seekers (not to diminish the issue of real drug seekers, but there has to be a way to separate the addict from the sufferer).  People who've researched diagnoses and diagnostics are hypochondriacs.  People who rattle off terminology are, at best, show offs and more often, labelled as attention seekers.  And unfortunately many older, more established physicians consider the involved patient a nuisance who couldn't possibly suggest something the doctor didn't consider on his or her own.  This is also seen in brand new practitioners whose wet ink on their licenses clearly tells us they know all the latest information and we should trust them implicitly."

Do you consider yourself an ePatient? Have you had experiences similar to the ones described above?

If you were given an opportunity to help educate health care providers on this topic, what would YOU want your future nurses and doctors to know?

Discriminating Fungi Choose Sjoggies

Image of Candida albicans culture found here. See why it's called "albicans", which means "white"? 

Thrush, or oral Candida infections, in the mouths of people with Sjogren's syndrome are unfortunately common. A recent study in Peking sought to learn more about the infecting agents that cause thrush, specifically if sjoggies mouths have a different species of Candida than non-dry-mouth people.

Here's the study objective:

To compare the quantity of the main important Candida species in the oral cavity between the patients with primary Sjogren's syndrome (pSS) and no dry mouth healthy controls, and to explore the discriminative species of fungi between the two groups.

The results:

Candida albicans was the dominant Candida in both of the groups. Candida tropicalis and Candida parapsilosis were more detected in the pSS group.

Interesting. It appears that a dry mouth and it's altered oral environment will be host to a different mix of organisms that reside there.

You can read more about Candidiasis here. Take a look at the Sjogren's Syndrome Foundation Patient Education sheet entitled: Oral Candidiasis (Thrush) in Sjogren's.

Have you had issues with Candidiasis -- or thrush?

Back Home

My husband has happy feet. He LOVES nothing better than to get behind the wheel of a car and drive for days which is what we've been doing. I'll need a day to rest up from our adventures. Maybe it would be more accurate to say that he has happy wheels?

See y'all tomorrow.

It's all in the Knee

Exercises found here. 

Guess what? Instead of my usual litany of aches and pains, today the subject of my post is a good thing. Wahoo!

I'm sure that I've bored everyone silly with my stories about the osteoarthritis in my knee. The pain, the swelling, the limping........the injection, the fluid removal...wah wah wah....  But I'm happy to say that things have improved considerably. I'm thinking this is due to either one or all of three things:

1. A synvisc injection
2. Taking glucosamine supplements after clearing it with Dr. Young Guy
3. A visit to my physical therapist, who instructed me in appropriate exercises to increase the flexibility and strength of the muscles around my pesky joint. 

Yesssss!

The Great Schnauzer Escape

Mags is the light grey one. Little stinker. 

Wanna hear a naughty dog story?

We had left the schnauzers in the capable hands of our neighbor Susan and her family for an overnighter as we were exploring eastern Oregon a few days ago. Maggie and Lulu regard Susan's home as their home-away-from-home and get along with their dog, Skippy, really well. We're so lucky that we have never had to take them to a dog kennel when we travel.

So Susan had let all three mutts out in their back yard while she was doing stuff in the house. When her son came home from school, he noticed that the gate to their yard was open.

Ruh roh!

You can buy your very own Scooby Doo helium balloon here. 

Lulu and Skippy were still in the yard..... but Maggie was nowhere in sight. Off went Susan and her son on a schnauzer search. Several hours later, she was found in another neighbor's yard and returned back to Susan, much to everyone's relief.

But then.

Susan and her hubby went out for dinner that evening, and after arriving back home, let the woogies out into the back yard AGAIN.

Ruh roh!!

Round two of the great Maggie escape. No one is certain how she managed it, but that little stinker was missing AGAIN. Twice in one day! And once again, Lulu and Skippy stayed put while Mags took herself for a walk. So the search party re-convened but this time was unsuccessful in locating the runaway pooch.

Poor Susan. She spent the rest of the evening prowling the neighborhood flashlight in hand, putting up "lost dog" posters, contacting the humane society, and as a last resort.......scouring the internet for local miniature schnauzer breeders because she was sure that she would have to buy us another puppy.

Meanwhile.

While all the activity was going on, Miss Mags had strolled into ANOTHER neighbor's garage, and curled up in a comfy doggie bed conveniently located there. She drifted off to sleep for the night as most of our neighbors were running around out on the street in a find-the-schnauzer panic.

Good grief.

The next morning, she was found in the garage by the very perplexed homeowner, who knew exactly who Maggie was and where she SHOULD have been instead of napping on their dog Coconut's bed. Tsk.

But all's well that ends well -- Mags is back where she belongs. For now. And seems very pleased with herself, rotten thing. We still don't know exactly how she got out -- and she's not telling.

Pictures are Lazy

I'm feeling kind of tuckered out today, so decided to take the blogging easy way out and put up more pictures of our recent drive-around instead of straining my brain to actually put a coherent paragraph or two together. These photos were taken in eastern Oregon. And, yes.....they're mostly all ROCKS. And MOUNTAINS. The usual subject matter for most of my photography. Well, except for this one for Terese:

Can you stand looking at more scenery? Here it comes:

See y'all tomorrow.

And Now For Something Completely Different....

You can see this and other Nora images on her website, here. 

It's a pity that we haven't had enough opportunities to broaden our cultural horizons around here on Reasonably Well. But don't despair. Here's the remedy: take a listen to Nora, the piano cat, performing CATcerto composed by lithuanian conductor, composer and artist Mindaugas Piečaitis. The world premiere was performed by Klaipėda Chamber Orchestra in the Klaipėda Concert Hall in Klaipėda (Lithuania) on 5th June, 2009.

Bravo, Nora. Inspirational. Truly inspirational.

If you would like to attempt to re-create these lovely musical themes on YOUR piano, you can download and print a PDF file of the music here.

In Living Color

I haven't taken my camera out for a good outing in AGES. What fun.

Rituximab Therapy in Sjogren's Syndrome: a Glass Half Empty or a Glass Half Full?

Thanks to a member of one of my newsgroups for a link to this recent study: Rituximab therapy for primary Sjögren's syndrome: An open-label clinical trial and mechanistic analysis

"In primary Sjögren's syndrome, a single treatment course of rituximab was not associated with any unexpected toxicities and led to only modest clinical benefits despite effective depletion of blood B cells."

and a discussion of the the same study on Medscape: Reuters Health Information: Rituximab Only Modestly Beneficial in Primary Sjögren's Syndrome Feb 01, 2013

"Improvements in tongue dryness, thirst, oral discomfort, and overall fatigue were statistically significant, albeit modest, but there were no significant improvements in joint pain, stimulated and unstimulated whole salivary flow, tear production, or ocular surface dryness."

Only modest clinical benefits....hm......

Let's review my mousie energy chart, shall we? And, um, disregard the highlighted mousie ears, tails, and enlarged eye because I want to minimize the goofy elements in this post.

If we examine the graph, specifically the Y axis, near the top of the graph is a mark which indicates estimated energy levels before the onset of Sjogren's syndrome. Note also the distance from this point, to the intersection of the X axis.

THEN note the height of the curve of energy response, which occurs somewhere between one and a half and four months post infusion. I approximated that at the peak of my response to rituximab, that I had regained about half the energy reserves that I had pre-autoimmune disease.

Half.

To some, that amount may seem "moderate", but to me regaining half of my previous energy levels is vitally important. That half made it possible for me to attend my kids' weddings with enough energy to truly be present and cherish the day. It means that Christmas cards were sent, presents purchased and wrapped, and that I was able to spend quality time with my family and friends over the holidays. It meant months without daily naps. And months without experiencing that awful physical sensation of reaching the absolute bottom of my energy reserves which results in cold sweats, shaking, feeling profoundly sad and frustrated, and hours in bed replenishing those reserves.

That "moderate" response gave me back a good chunk of my life. Not all of it -- but a big piece. I consider the importance of that chunk of energy far more valuable than "modest" or "moderate" worth. I guess it's just a matter of looking at a glass and deciding if it's half full, or half empty, don't you think? For me, the rituximab glass is definitely half FULL.

I wonder if this sentence is a reflection of the outdated assumption that Sjogren's syndrome's biggest physical problem is dry eyes and dry mouth?

"...improvements in tongue dryness, thirst, oral discomfort, and overall fatigue were statistically significant, albeit modest, but there were no significant improvements in joint pain, stimulated and unstimulated whole salivary flow, tear production, or ocular surface dryness."

Of course, this is an important observation. Yes, dry eyes and dry mouth are an integral part of this disease. But for me, these things are a major annoyance, not a life changer. The symptom that robbed me of my job, my hobbies, several of my friends, and changed my life forever is FATIGUE.

What good is a moist mouth or not having to use eyedrops if I'm still unable to do anything except eat and sleep and bathe? Don't these researchers get it? While I'm glad that the authors of the study recommend continued research, their conclusion leads me to believe that the research world isn't seeing the forest for the trees:

"Despite the limited benefits in this small study, the authors argue against abandoning research on rituximab for these patients. "Larger randomized, placebo-controlled clinical trials...are needed to further evaluate the clinical efficacy and safety of rituximab therapy for primary Sjögren's syndrome," they conclude."

If this were a political campaign, I'd recommend that the bumper stickers for candidate rituximab would read: IT'S THE FATIGUE, STUPID!"

When a Physician is a Patient

Take some time to read this excellent guest post by Kevin R. Campbell, MD on KevinMD.com entitled Physicians can be better doctors by being patients:

Physicians are terrible patients. That fact is one of the few absolutes in medicine. I can remember developing an acute appendicitis as a medical student. I remember the fear, the uncertainty and the discomfort. I can remember wanting someone who was in charge to spend a little time in my room explaining things to me. I can remember the embarrassment I felt when a group of 6 student nurses paraded into my room with a senior staff nurse in order to learn how to put in a Foley catheter. As physicians, we are used to being the person in control in the healthcare setting. When the doctor becomes the patient, all perceived control is surrendered....... Once the transition to patient is made, there is no going back. Nothing ever seems the same.

Dr. Campbell goes on to conclude:

Patients deserve our very best. As physicians, we must remember that the people we care for are often lonely, frightened and may feel as if their world is spinning out of control. Becoming a patient can open our eyes to the challenges of the patient condition. We must strive to provide better, more compassionate care to our patients. By wearing a gown, providers may be able to better empathize with patients and ultimately ease the pain of living with disease.

Well said, Dr. Campbell. Well said.

I appreciate Dr. C's excellent observations and applaud his change in perspective. I'm gratified to see him encourage other health care providers to look at their patients with true empathy. This is exactly what is needed in our health care delivery system today. Dr. C's patients are fortunate to have him involved in their care. I can find nothing in Dr. Campbell's post with which I have an issue, but I'd like to add another point to this great topic: This experience isn't unique to physicians. Once ANYONE makes that transition to becoming a patient, there is ".....no going back. Nothing ever seems the same."

None of us enters a hospital as a "patient". Before any of us put on that hospital gown, we're bankers, stay at home parents, lawyers, accountants, RETIRED NURSES, programmers, cashiers, secretaries, waiters, engineers, truck drivers, teachers, cabbies....I could go on forever. Each of us has to make that painful transition from being a person who feels competent and in control, to becoming someone who feels extremely vulnerable.

In addition to feeling empathy for patients as "patients", I also appreciate those physicians that recognize me as the competent person that I am (sometimes.....) when I'm not wearing a hospital gown: someone that is capable of being treated as an equal partner in my health care.

Hospital gown image found here.

What She'll Remember

This post from a sjoggie blog written by a young mom, Sjoggie StAHMer, touched my heart.

"...L won't remember that I couldn't volunteer to help with her school musical. Hopefully, she'll remember my beaming face. At both performances. As I try not to cry." continue reading here. 

Kristen.........This disease is so unfair. I'm sorry.

What Does He Know?

I wonder what it means when John and I get into Goldie and actually take a Sunday drive? Does this indicate that we've reached some point in our lives?

Which is just what we did yesterday. Even though it was a gloomy overcast kind of day, we threw the camera in the car, topped off Goldie's gas tank, and headed for the hills. The foothills of the Cascade mountains, that is. It's so much fun to just choose a meandering road and follow it.

It wasn't a good day for pictures, for a couple of reasons. First, I forgot to change lenses on Canon. Secondly, the light was crummy. And third -- Goldie's windshield was far grimier than I thought and any photos snapped through her glass looked smudgy. Ah, well.

We decided to find a mom-and-pop type of restaurant for lunch, so I got out my iPhone and brought up one of those review apps. We had pulled into an.....interesting.....looking place out in the middle of nowhere, and I thought I'd type in the name of the bar and grill to see what kind of reviews it had. It only had one which was very critical. Some guy gave it a one star rating because, "The only people in there were locals and farmers."

Excuse me?!

What the hell is wrong with rubbing elbows with a local or a FARMER?, I exclaimed. Being a farm girl myself, AND a local, I was seriously insulted. What a snobby reviewer. What a creep. What a dodo-head.

I told John that we were going to march in there and give them our business, regardless of the one star rating just because some snotty person thought that the patrons weren't classy enough. I didn't care if the joint was a serious dive: it was the principle of the thing. We're going in! I told John.

So we did. As we walked in from the parking lot, we passed two things which made me think that this place deserved FIVE stars: a large wooden carving of a moose:

And the black and white sign in the window that warned that people were throwing around peanut shells inside:

Promising, we thought. This looked like a place that Greg and Terese would like. And we were right.

This bar/restaurant was absolutely delightful. It was clean, we were greeted immediately by a waitress, were given a bowlful of peanuts and instructed that the shells HAD to be thrown on the floor, and had our drinks in a jiffy which were also delightful: John sampled a local microbrew beer, and I ordered a bloody mary made from scratch (as in start-with-tomato-juice-and-add-real-spices) and loaded up with olives, lime, celery, and pickled green beans. Mmmmmm......

Of course there was an enormous fake moose head generously decorated with Mardi Gras beads and mounted prominently between the large new flat screen televisions. I thought the moose tracks on the ceiling were a nice touch. The bathrooms were clean and we noticed that twice a month they offered live music. The place was full and the patrons were obviously from a large variety of backgrounds.

John wondered how hard it was to hold a moose upside down long enough to have him walk around on the ceiling. Yeah.

I am SO figuring out how to leave a review of my own on this app.

Snort.

I Think it's Working

Kitty cat update:

Genevieve was watching us from her kitty suite yesterday. Lulu was looking right back at her from the other side.

Suddenly, she ran straight for the gate and was up and over it in an instant and scooted behind the couch. She seemed quite pleased with herself and purred happily.

Well, now. That was quite brave. And took a lot of initiative and energy. I think she's feeling better!

Yay, Genny!

We are returning to the vet sometime this week for another x-ray to see how much of the "crystal sludge" remains in her bladder.

Graph This

I'm beginning to feel that my rituximab-induced energy is on the wane.

Drat.

But I shouldn't be too surprised, because it appears that my energy levels are following roughly the same pattern that they did after my first cycle of mousie drugs. I was thinking about that today after settling in for an afternoon nap. I haven't had to take a nap in ages.

This made me cranky.

But after I thought about it and counted the months on my fingers...hm....October, November, December, January, February.....  Ah. Ok, I thought. THAT's why. I'm running out of mousie drugs. I was still cranky because I was tired but at least could make some sense of it all.

So I drifted off to sleep, and when I awakened, decided that I should make some kind of visual aid for myself. One that reminded me of my energy timeline.

I'm a visual learner. Also, I like do weirdo projects instead of clean my house or do the dishes.

I grabbed a pencil and some paper, and this is what I came up with:

X axis = elapsed time from completion of infusion cycle, measured in months.
Y axis = energy levels. Unknown measurement unit.

I tried to plot my energy/time points based on my recollections. With only two complete cycles under my belt, who knows how accurate this is? But I feel as though both treatment cycles have followed the same pattern.

I'm approximately at the four month point, and can without doubt tell that I'm on the downward side of the curve. Last go-around, it felt as though I experienced a sharp decrease in energy from month 4 through month 5, after which my energy bottomed out.

After I had finished the graph, I sat back and just stared at it. I've never been able to diagram any aspect of my life before, and this struck me as being very strange. As I kept looking at the page, it occurred to me that I had seen that......that.....SHAPE before. Hm. Looks awfully familiar, I thought....

Good grief.

I grabbed a pencil and a highlighter and added a few details. Do YOU see what I saw?

Yes. Even my energy levels are mouse-shaped. This visual aid turned out to be even more instructive than I had thought.

Neurosjogren Therapy

Check out this article published in the Journal of Clinical Rheumatology this month:

Neurosjögren: Early Therapy is Associated With Successful Outcomes 

Amelia Santosa, MBBS, MMed, MRCP, Anita Y.N. Lim, MBChB, MRCP, Sheila Vasoo, MBBS, FAMS, FRCP(Edin), Tang Ching Lau, MBBS, MMed, MMedSec, FRCP, Gim Gee Teng, MBBS
J Clin Rheumatol. 2012;18(8):389-392.  

Introduction: Primary Sjögren syndrome (PSS) is a systemic autoimmune condition characterized by chronic lymphocytic and plasmacellular infiltration of exocrine glands. Prevalence ranges from 0.09% to 3.5%[1] with a female predilection (ratio of 9:1).[2] Fatigue and joint and muscle pains are common at presentation and occur early in the disease. The hallmark of PSS, ocular and oral dryness, is present in more than 90% of patients,[3] with frequent positivity of antinuclear antibody (ANA), anti-Ro/SS-A, and rheumatoid factor (RF).[2] Prevalence of neurologic manifestations vary from 0% to 60%.[2,4,5] In view of the scarcity of studies on neurosjögren from Asia, we report our cohort of patients with severe neurologic manifestations of PSS and review the literature.
Conclusion: Neurologic diseases reflect high disease activity and benefit from prompt aggressive treatment. Vigilance is needed when female patients present with new-onset unexplained neurologic syndromes, as the typical sicca complex may be absent. Seemingly benign PSS may evolve over time to affect the neurologic system. Continued follow-up and awareness for new neurologic symptoms facilitate early intervention.

Of particular interest to me was their statement in the conclusion:
"...Vigilance is needed when female patients present with new-onset unexplained neurologic syndromes, as the typical sicca complex may be absent. Seemingly benign PSS may evolve over time to affect the neurologic system."

Early identification despite absence of dry mouth/dry eyes (sicca). Early aggressive treatment. Good idea.

Have you seen the term neurosjogren before? I haven't -- but it makes sense to me.

We Have a Purring Puddy

Kitty cat update:

Miss Genevieve has been recuperating in her own little private hospital suite located in our laundry room. Like the kitty gate? I wish she could roam around the house but I'm afraid that she'd not be close enough to her litter box in her wanderings, since she still is needing to pee every few minutes, poor girlie.

She spends most of the time either curled up in her little bed, or squatting in her litter box, but last night she took a stroll around the room to say hi. And when I picked her up to cuddle, she purred! This made me very happy.

Our vet said that encouraging her to drink lots of water would help the food and medicine work more quickly, so off I went to the pet supply store and found this neato thingie:

Her own private drinking fountain! How cool is that? Luckily, she likes it.....

Lulu finds this all the most entertaining thing EVER. Maggie isn't even remotely interested.

Lulu says it's like a kitty cat reality TV show. In person. So far these two seem to be getting along pretty well and Genny doesn't seem freaked out that a schnauzer has her nose plastered against the gate incessantly.  It remains to be seen how well they do once the kitty cat gate comes down....

So: Still in her litter box far too frequently. BUT Eating. Drinking. Purring.

Thanks for all of the very kind comments and emails.

They RUN!

During church last weekend, I heard a quick thud thud thud thud thud and saw a small child running gleefully up the center aisle with his mom close at his heels. She scooped him up about three quarters of the way to the front, and smiled ruefully as she made her way back to her pew, the kid beaming with pride. I could see that he was very satisfied with his kid-escapes-Mom-and-pew effort.

That WAS pretty good, little guy. I thought. But it doesn't even begin to compare to my then two-something-year-old D#1's memorable dash-up-the-church-aisle-during-the-middle-of-Mass incident.

My kids have always been overachievers. Ahhh. Memories....

So back then we belonged to a congregation that had an enormous church and very looooooooong sanctuary with an endless marble center aisle. We usually sat near the back of that church since at the time John and I had a baby and two toddlers.

In this particular rotten kid story, and I have a million of 'em, D#1 had a brand spankin' new pair of shiny patent leather shoes, and she was delighted with them. So she spent the first half of Mass taking her shoes off. And then back on. And off. And on. And off. And on. First one foot, then the other. She had a little pink dress on and was wearing a pair of tights that had rows and rows of ruffles on her butt, so every time she lifted up her chubby little foot, her white lace ruffles would rustle.

I watched her with amusement and relief thinking that at least one of my wild kiddo problems in church was solved -- I would give D#1 shoes! I could do that! One new pair every Sunday! The little stinker lulled me into a false sense of security and my attention was at long last free to focus on, hm...gee.....PRAYER in church, maybe? What a concept.

My first mistake was closing my eyes. The second mistake was waiting that nanosecond before leaping into action after I heard the click of brand new patent leather shoes on marble. Heading AWAY from our pew. Toward the front of the church.

I sprinted after her since John had D#2 in his arms. My son watched his sister enviously. He had never made it past the end of the pew before being snagged.

This is what I thought I looked like:

Image found here. I have baseball on the brain. Spring training is right around the corner. 

But I'm sure I'm actually looked more like this:

Image found here. 

Dang, I thought. This kid can really MOVE! as she gained at least three pews on me and approached the steps leading to the altar where our pastor was watching with a twinkle in his eyes. I'm sure he's seen this maneuver many times. 

D#1 didn't slow down for a second as she skipped up the steps to the dais, and I quickly tried to plan my snag-the-kid strategy. I knew that this would be the child that would enjoy a victory lap around the altar. I also knew that if I chased her around the altar, I'd lose. And we'd be off and running to who knows where else. So I stopped in my tracks and assumed the baseball outfielder's ready position:

Image from Baseball Team Manual found here. 

Kind of like that. Except I wasn't wearing a hat. Thank goodness I wasn't wearing a skirt.....so as D#1 came full circle around Fr. W., who had unconcernedly continued on with the service, she saw me waiting and hesitated as she was deciding to veer right or left.

It was her undoing. 

I timed my grab impeccably. 

Image found here. Wouldn't have been pretty if I had missed. Of course, it wasn't pretty regardless. 

I headed back to our seat with my frustrated track star wannabe tucked under my arm. She yelled "We RUN! We RUN!" with arms and feet and ruffle butt tights flailing as I passed several of my giggling co-workers, past John and the other kids, and out the door where I set her down on the expansive lawn. She immediately began running in circles yet again, happily shrieking, "We RUN! We RUN!" 

No kidding, girlfriend. 

She's still running; luckily not in circles anymore. She's never lost that fierce determination and spirit that all three of my kids possess, thank goodness. 

So, yes, little boy in church last Sunday........you made a good effort. But your quest is not complete without the victory lap. You can do it! And hang in there, Mom. Been there and done that.....

Genevieve

This is Genevieve. She's such a sweet little cat, but the poor girl has had a rough go of things for the past few days.

It started back in late November, when she began to leave little puddles of kitty pee all over D#1's apartment, and off they went to a vet. A few months and a zillion vet exams and a LOT of vet fees later, my daughter called me Sunday afternoon in tears. She was at wits end. Genny was still incontinent and obviously not feeing well, her couch was ruined, she was still mopping up kitty puddles, and she had been advised to consider putting Genny to sleep by some staff members at her vet's office. D#1 was brokenhearted.

Poor D#1. Poor Genevieve.

"Mom. The vet said that her urine and blood test are normal. I don't know what else to do!"

I knew what to do.

John and I hopped into Goldie, topped off her gas tank, ran into Petco for a new litterbox and cat food, and made a beeline south on I-5. Meanwhile, D#1 and Genevieve were heading north from San Francisco. We met near the Oregon/California border about four and a half hours later and headed back in opposite directions after a quick dinner and hugs, this time Genevieve tucked into Goldie with John and I.

So today, after two days of assessment, x-rays, blood work, warm blankies and kitty cat pain medicine, we found out the real story: Genevieve has a cluster of stones in her bladder, and crystals in her urine, which may respond to treatment.

Think healthy, comfortable kitty thoughts for us.

Unexpected

What I thought would be a dull Sunday afternoon (since the Packers or Seahawks were NOT playing in the Superbowl) turned into a road trip to the Oregon/California border -- and right back home again.

Yawn.

I'll tell y'all about it tomorrow.

Watch This: The Story of AARDA

This is an excellent video created by the American Autoimmune Related Diseases Association.

Take time to watch for several reasons: it addresses what the AARDA is, it does a very good job of explaining autoimmunity, and emphasizes the vital importance of awareness of your autoimmune family history.

Hoodleehoo This

You know, today's post is of the type that I love writing most: first: completely silly. And secondly: one in which I pick on my best buddy Terese.

Not because she deserves it, but simply because she's THERE. It's my nature. Anyone that comes into my personal sphere of Julia-ness is fair game, I always say......

Today's pick-on-Terese topic?

Well. Terese has a really interesting vocabulary. I think that's one of the things the I really enjoy about her: she comes up with the darndest words to describe things. One word in particular that has been part of her colorful word repertoire is my favorite. I think she's used this one ever since we met about seventeen years ago. It's a goodie: hoodleehoo. \whoo-dill-ee-`hoo\ Definition: Who knows? She uses this word interchangeably for just about anything or anyone imaginable. As in:

"Well. That was the weirdest hoodleehoo I'VE ever seen."

or

"Greg! Get your hoodleehoo over here!"

or

"Just take this hoodleehoo and put it on that hoodleehoo. But be careful of the other hoodleehoo." This comment used in an incident at her house which involved a fallen fir tree, a four wheel truck, and a towing strap.

Yes. It really happened. Two women. One four-wheel truck. One towing strap. Logging. But I digress...

Ever since I heard the word hoodleehoo come out of this woman's mouth, I have had this niggling thought that I'd heard it before, but I couldn't remember where or when. Last week, as John and I and Greg and Terese were yakking, it occurred to me: of course! I KNEW that I've heard this before! Space Ghost Musical Bar-B-Que. Weirdest kids' CD that I have ever heard, which means that of course my children listened to it endlessly, especially when we were in the car. For miles and miles. And hours and hours and hours. And the last time that we took a family vacation together (when they were all in their TWENTIES) we listened to it for hours and hours and miles and miles. My goodness.

Yes. They're strange. And it's all my fault.

There's a delightful (?!) song entitled HOODLEEHOO -- track 21 on that darned thing -- and in the lyrics I discovered the actual meaning of this word: it's a DANCE.

Hey!
Hoodleehoo
Hoodleehoo
[Group]
What in the world is the Hoodleehoo?
[Brak]
Sit yourself down and we'll tell you
How to do the Hoodleehoo
[Space Ghost]
You pick your left foot up
Until you touch your nose
Put your rear on your rear
And wiggle your toes
Hop all around like a kangaroo
You're almost ready to Hoodleehoo
Grab some pickles and a pound of cheese
Get some burgers on mayonaise
Eat 'em all up
But don't forget to chew
Now you're doing the Hoodleehoo
Hey!
[Brak]
Hoodleehoo
Hoodleehoo
[Group]
So that's how you do the Hoodleehoo! 

Even though I don't play it unless someone forcibly twists my arm, I still drive around with this crazy CD in Goldie. You can buy your very own here, although I can't imagine why. Want to hear it? You DO?

C'mon everybody! Let's sing and dance along! Terese first! Mystery solved!

Not surprisingly, Hoodleehoo isn't my favorite track of this CD. Nope. My favorite is the classic "I Love Beans."

I Heart This

I love NPR's Science Friday show. Yes, I'm an Ira Flatow groupie. Science Friday's website not only has interesting radio shows, podcasts, blog, and a book club for cryin' out loud, but also sends out really intriguing tweets on Twitter. I thought yesterday's tweet was especially interesting since today is February 1st -- and we all know that February is devoted to chocolate, er..... our hearts..... in celebration of Valentine's day.

In view of the recent study release that concluded this:

CONCLUSION: Myocardial function is disturbed and there is significant atrial electromechanical delay in patients with primary SS. This study is the first to show altered myocardial function and atrial electromechanical properties in primary SS.

learning more about heart electromechanical function via detailed animation is a very, very good thing for everyone -- including sjoggies.

So thanks to SciFri for tweeting the link to this AMAZING YouTube video of an animation of the human heart.