Happy Passover. Happy Easter. Happy Spring!

Delectable, delicious, and delightful image found here. 

The Easter bunny is bringing only ONE candy confection to the baskets of our household members this year, and everyone was allowed to request their favorite.

We seem to fall into two candy camps around here:
-- The See's Candy people.
OR
--The grocery store candy people.

I will not refuse either or any types of goodies, myself. But when this time of year rolls around, I simply must have one of these:

Infographic found here. 

Mmmm.

Dang. Wonder why that stingy old rabbit decided that I could only have ONE this year? Ooooo. Betcha I can remedy that tomorrow when all the Easter candy is on sale...

.::whip snap::.  BACK, BICJ! Down, girl!

Happy Easter, everyone!

Hippity Hoppity

Hm. I think there's a holiday coming up.... sometime soon...

Could it be EASTER? My goodness, so it is.

And yes, Kelly, it's time to make lots of yummy things for Easter dinner, including stuff with pimentos:

It wouldn't be an Easter Ham-O-Rama dinner around here without two things: one being two dueling smoked ham glazes (I let John and Son handle this exclusively) and the second being Gramma's Cheesy Potatoes. This is not what I would consider health food, but it's definitely comfort food around our house.

Mom O's Cheesy Potatoes

10 cooked potatoes cooled, peeled, and cut into one inch cubes
1 medium onion chopped
1 small jar minced pimentos
dried parsley to taste
6 slices white or sourdough bread cut into one inch cubes
8 ounces Velveeta process cheese cut into one inch cubes
salt and pepper to taste

Combine above and place in a 9 x 13 baking dish.

1 cup milk
1 cup butter

Melt butter and milk in a small saucepan and pour evenly over the potato mixture. Cover pan with aluminum foil.

Bake at 325 degrees f for thirty minutes, then remove foil and bake for another thirty minutes. Serves 10 - 12

Melatonin Adverse Drug Interactions Include Corticosteroids

Image found here.

I read this article entitled 'OTC Supplement May Aid in Migraine Prevention' from Medscape Medical News with great interest:

"Melatonin 3 mg was significantly better than placebo with no difference compared to amitriptyline with respect to migraine prevention," principal investigator Mario Peres, MD, PhD, told delegates here attending the American Academy of Neurology (AAN) 65th Annual Meeting. Results from a multicenter, randomized, double-blind, placebo-controlled trial showed that 3 mg of melatonin was more effective than placebo and had efficacy similar to that of 25 mg of amitriptyline. Furthermore, it was better tolerated than amitriptyline, with lower rates of daytime sleepiness and no weight gain. (Bolding mine.)

Wow. Cool beans, I thought. You can read the complete article discussing the study here. As someone who has occasional migraines, the idea of preventing these smack-one-in-the-head-and-leave-one-flat incidents is very appealing, especially if the preventative agent is something as easily obtained and inexpensive as 3 mg of melatonin.

The article went on the quote Tobias Kurth, MD, University of Bordeaux in France, and associate epidemiologist, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts:

"I'm not aware of any major side effects associated with melatonin. As long clinicians instruct patients appropriately and emphasize the importance of taking the recommended dose at the same time every day it may be worthwhile," he said.

Well, now. I was considering making a dash to the nearest vitamin/supplement store in search of melatonin, when I had a niggling thought......hm......"instruct patients appropriately".....

Ah. This would include information including melatonin adverse drug interactions. Which, as I recalled, are considerable. Read this from the University of Maryland Medical Center:


Blood pressure medications -- Melatonin may reduce the effectiveness of blood pressure medications like methoxamine and clonidine. In addition, medications in a class called calcium channel blockers (such as nifedipine, verapamil, diltiazem, amlodipine, nimodipine, felodipine, nisoldipine, and bepridil) may decrease melatonin levels. Use of beta-blockers (another class of high blood pressure medications that includes propranolol, acebutolol, atenolol, labetolol, metoprolol, pindolol, nadolol, sotalol, and timolol) may reduce melatonin production in the body.

Blood-thinning medications, anticoagulants -- Melatonin may increase the risk of bleeding from anticoagulant medications such as warfarin.

Steroids and immunosuppressant medications -- People should not take melatonin with corticosteroids or other medications used to suppress the immune system because the supplement may cause them to be ineffective. (Bolding mine.)

And this, from National Institutes of Health Medline:


Birth control pills (Contraceptive drugs)
The body makes melatonin. Birth control pills seem to increase how much melatonin the body makes. Taking melatonin along with birth control pills might cause too much melatonin to be in the body.

Fluvoxamine (Luvox)
Taking fluvoxamine (Luvox) can increase the amount of melatonin that the body absorbs. Taking melatonin along with fluvoxamine (Luvox) might increase the effects and side effects of melatonin.

Medications for diabetes (Antidiabetes drugs)
Melatonin might increase blood sugar. Diabetes medications are used to lower blood sugar. By increasing blood sugar, melatonin might decrease the effectiveness of diabetes medications. Monitor your blood sugar closely. The dose of your diabetes medication might need to be changed.

Medications that decrease the immune system (Immunosuppressants)
Melatonin might increase the immune system. Taking melatonin along with medications that decrease the immune system might decrease the effectiveness of medications that decrease the immune system. Some medications that decrease the immune system include azathioprine (Imuran), basiliximab (Simulect), cyclosporine (Neoral, Sandimmune), daclizumab (Zenapax), muromonab-CD3 (OKT3, Orthoclone OKT3), mycophenolate (CellCept), tacrolimus (FK506, Prograf), sirolimus (Rapamune), prednisone (Deltasone, Orasone), corticosteroids (glucocorticoids), and others. (Bolding mine.)

Medications that slow blood clotting (Anticoagulant / Antiplatelet drugs)
Melatonin might slow blood clotting. Taking melatonin along with medications that also slow clotting might increase the chances of bruising and bleeding.

Nifedipine GITS (Procardia XL)
Nifedipine GITS (Procardia XL) is used to lower blood pressure. Taking melatonin might decrease the effectiveness of nifedipine GITS for lowering blood pressure.

Sedative medications (Benzodiazepines)
Melatonin might cause sleepiness and drowsiness. Drugs that cause sleepiness and drowsiness are called sedatives. Taking melatonin along with sedative medications might cause too much sleepiness.

My goodness. That little OTC supplement sitting benignly in the grocery store can cause my prednisone and immunosuppressants to be ineffective?! And alter blood clotting times, increase blood sugar, and change the effectiveness of blood pressure medications?

I think I'll pass on the melatonin, thank you very much.

.::NEVER take any supplements or over the counter medications without checking with your health care provider::.

Just because you can buy this and other supplements in any grocery store doesn't mean that it would be appropriate -- or safe -- for you and your individual medical concerns.

Yeah. Prednisone Will do That to You Every Time....

What I needed to buy:

One minuscule two ounce jar of pimentos. 

What I actually bought:

I love the owl picture. 

Can I really blame attribute this Goldie-full-of-stuff to my increased dose of prednisone? Yes? No? Maybe?

I'm thinking that prednisone-induced shopping is DEFINITELY one of the side effects of this drug. I can't believe it's not listed on the label. Someone should call the FDA.

Maggie agrees.

He's Back In the Harness

Anatomy of a harness found here. 

My house is so quiet this week.

To explain why, I have to back up about six months. Last summer/fall, John had been toying with the idea of finding another job, having been working for a high tech global employer for lots and lots of years. He didn't dislike his job: he just was getting antsy to try something new. As luck or providence or whatever you want to call it would have it, right about that time his company decided to reduce the number of folks in the Portland area workforce, and offered those folks 55 years and older the opportunity to yoink a sweet early retirement package.

John knew a good thing when he saw it, so accepted quickly. He decided to take several months off before returning to the workplace, and so he's been home with me every single day since D#2's wedding.

This is why we've been able to just pack up and zip out to the coast, or zoom over to the southwest, or motor down to San Francisco whenever our little hearts desired. It was wonderful. We've never had this much time together since we were married in 1980, and I'm really glad to say that I still like this guy. He's a fun dude to hang around with, even thirty three years later.

But we knew that his retirement was only temporary, and so now he's back working full-time. Sigh. It's a great new job, he's jazzed to be embarking on a new career move.

But  I miss him. I miss looking at the week ahead and saying to him, "So. Whaddya want to do THIS week?" I miss having breakfast, lunch, dinner, and bedtime snack together. I miss hearing him humming or singing all day long. I miss relaxed mornings as we sit over coffee guffawing together at strange things that we find on the internet. I miss being amused at the running conversations he has with Maggie and Lulu. And, to be perfectly honest, I will miss having laundry constantly done, floors mopped and vacuumed consistently, and having someone around who is capable of going through a grocery story and actually remembering what he went there for.

I think that when the day comes when John is ready to retire for good, that we'll be just fine. It was a nice retirement trial run.

But I have to get used to being alone for most of the day again, and this will take some getting used to.

I guess I'll just have to appreciate him even more during the hours that he is home.

When Your Illness Steals Your Career

Drawing the job-snatching Sjogren's Syndrome burglar is even harder than sketching gossiping T-cells.

My goodness.

I can certainly empathize with a reader who is disabled due to autoimmune disease, was denied her first application for SSI disability, and sent me this question:

My struggle is with the guilt I feel for not working. I feel like I am not carrying my weight. They are days I feel like I could maybe work, some that I don’t think I could. Then I start to wonder, is it in my head, have I just gotten lazy? Should I drop the appeal (for SSI disability) and look for work?  I was wondering if you might touch on this topic in your blog? I would really like to hear from others that may find themselves in this position.

I know how this reader feels. I wrote a post about my specific reasons for leaving the workplace back in 2009:


Recently, someone asked me why I am not working. I haven't heard that question for awhile, and it took me by surprise. The person who asked didn't know me well, and was only responding to my now automatic answer when she asked - "So, what do you do?" I replied with my usual "I'm a retired nurse" routine. She looked at me quizzically for a few seconds and remarked that she had heard there was a nursing shortage right now; implying that since I looked somewhat normal that I should really be wearing scrubs and schlepping my stethoscope around, which brought to mind what a difficult process it was to arrive at that humbling decision to leave nursing. 

I'll bet many, many other sjoggies out there have wrestled with the work vs. disability issue. It is so difficult since making this choice forces one to closely examine our lives from so many perspectives:

• How will this impact my family's finances? 
• How will this affect my marriage or my relationship with significant others if I'm not contributing anymore? 
• How will this affect MY self-esteem if I had previously put a great deal value on my career?
• How will the affect my responsibilities as a parent? 
• What will I DO all day if I'm not working? 
• What will I tell everyone? 
• What will I say to people that are judgmental about my decision? 

It's hard. Really, really hard. 

The Sjogren's Syndrome Foundation has created a very helpful patient education sheet entitled Tips for Obtaining Disability Benefits From the Social Security Administration (SSA). You can read it here.  

How have YOU dealt with this very trying situation? 

How to Cure a Craving

It's easy as pie.

Craving Mile High Lemon Meringue pie? Williams-Sonoma recipe can be found here.

A Sjoggie Creativity Challenge

No. It can't be a mouse.

I've been thinking. Which is always a dangerous thing...

I've felt for a very long time that we sjoggies need a mascot, or a symbol, or something that represents us. Something that is immediately recognizable to other sjoggies. Something that needs no words. Something that identifies one sjoggie to another instantly.

Since I feel very strongly that a visual representation of sorts would fill a need in Sjogren's Syndrome awareness, but have not the slightest inkling of what this thing would look like, I'm passing the challenge along to you: submit your sketch, or picture, or concept of an image along to me that you feel communicates "sjoggie" in no uncertain terms. It could be a creature, an object, a flag, a picture..... but not a word.

I've always excelled in passing the buck delegation skills.

To provide a small incentive in sparking those creative skills that I know y'all possess, I'm offering a prize to the top eight submissions: Each of the finalist designers will receive one of the new super spiff awareness bracelets from the Sjogren's Syndrome Foundation.

You can buy your very own awareness bracelets from the Sjogren's Syndrome Foundation, here. But enter my contest first -- you may get yours for free.

The winner chosen from the eight finalists will receive a hand-felted three dimensional figurine of our new Reasonably Well sjoggie mascot.

Oooo. Ahhhhh.

Here's the official rules:

1. Email your image, drawing, concept of an image, sketch, or model that you think universally represents sjoggies everywhere. Use of a word or alphabet letters will disqualify your entry.
2. You may submit as many entries as you like.
3. You may email your submissions to: juliaschulia(at)gmail(dot)com.
4. All submissions must be received by April 22nd, 2013, midnight. 
5. Judging panel includes: John, Terese, Greg, and D#1. 
6. If judging panel is unable to make decision, I -- yours truly -- will cast the deciding vote. 
7. Finalists will be notified via a post on Reasonably Well and their mailing addresses will be requested. 
8. Winner will be announced by May 1st, 2013.

I can't wait to see what y'all create!

Contests, Bottles, and Flare Tips

Get ready. I'm in the midst of planning a contest for y'all!

But since I can't do two things at once; like writing today's post AND thinking about contest strategy; I'm going to take advantage of two other sjoggie's great recent blog posts and link to them today. Thanks to Sheryl Aronson and Autoimmune Gal:

Head over to read Sheryl Aronson's recent post about this sjoggie friendly water bottle. You can buy your very own collapsable, dishwasher-safe, nifty spifty vapur water bottle here.

Great find, Sheryl! Maybe if I'm a really, really good sjoggie the Easter bunny will put one in my basket.

Autoimmune Gal's post entitled "Post Flare Recap" includes some good tips for dealing with those dumb stupid disease flares. Here's my favorite, but go read them all:


"...It was also essential for me to keep making my daily to-do lists. Getting dressed deserves a check on the list (yes, even that is a chore when I'm having a flare) and so does napping.  Those of us who get them know getting plenty of rest can be crucial for getting over a flare, but it still takes a lot of reminding for me to let myself sleep during the day. These lists can be more helpful for me during a flare than when my health is better.  My flares are usually accompanied by some serious brain fog and it is more likely that i I forget to take my medicine if I don't write it down. Everything I get done during a flare takes extra effort so having a list helps me to recognize what I can and did accomplish at the end of the day.   While it might sound a little silly, a check off on my to do list is my equivalent of giving myself a gold star.  Maybe I should even design a gold star system for the next flare."

I think you should give yourself a gold star just for writing this post, Missy. 

Stay tuned for an opportunity to flex those creativity brain cells and the potential to win FABULOUS PRIZES. Oh boy oh boy oh boy...

Sweet Strategy

Here's my weirdo Julia story for the week. Ready?

Honestly, I could tell weirdo Julia stories every day of the week but I do have some compassion for my readers, so I try to limit myself.

Ahem.

So. I had my appointment with Dr. Young Guy a few days ago. We set the date for my next infusion cycle which will begin on April 3rd. Initially we were shooting for April Fool's day, but the infusion center didn't have any appointments available that date. Dang.  I think this fool getting her mousie drugs on April Fool's day would be appropriate.

During my appointment, I showed Dr. YG my mousie energy graph. He was amused, but also was actually interested in the eyeball and snout part of the paper. "If you're going to be taking rituximab long term, it would be a good idea for us to manage that phase of the cycle, since you've told me that you feel really crummy then."

No kidding, I thought as I sat there makeup-less, hair barely combed into place, and wearing a stained set of sweatpants. Feeling less crummy sounds like a great idea.

We began discussing how I could experiment with my prednisone dosages during that time period -- within certain prescribed parameters, of course -- with the idea that bumping up my pred in a burst then taper mode immediately before the infusion may change the shape of that energy graph right around the eyeball.

So two days I began the burst phase of the dose, meaning that I doubled my usual daily dose of prednisone. And boy, howdy, do I ever FEEL as though I've doubled my dose of prednisone. A prednisone buzz is such a strange feeling, isn't it? Which brings me to the weirdo Julia part of the story here.

I always love sweet treats, but increasing my prednisone turns my sweet tooth into a sweet giant-sized-full-set-of-dentures. In this particular episode of pred-induced carb  cravings, my sweet of choice happens to be lemon pie.

I love lemon meringue pie....always have. But this week it's turned into an obsession precipitated by the dangerous combination of drug-related carb cravings and this seemingly innocent little facebook game:

I play this stupid game every day. It's addictive, so if you haven't played facebook Bake Shop Drop, don't start. 

I think that the grumpy chocolate chip cookies and red cupcakes and dopey donuts don't really look so appetizing, but see those cuuuuuttteeee plump delicious creamy tangy smiling little slices of lemon meringue pie?  Don't they look like the tastiest little things EVAR? One and a half day into my doubled dose as I was playing this game, as those little pie slices appeared on the screen my desire for lemon pie exploded, and hasn't diminished one little bit as the days have gone by. I think about lemon pie. I dream about lemon pie. Check out my refrigerator:

These little goodies are meant to duplicate a slice of lemon pie minus the crust........but I thought they tasted overwhelmingly artificial. I'll bet that this stuff was only threatened with a real lemon. Bleah.

I then moved on to cooking up a box of lemon pudding mix. I seem to recall liking this in the past, but hm. It just didn't do it for me.

So I caved and bought some bonafide real life lemons. And utilizing my new prednisone fake energy, will just get it over with and bake the stupid pie. Myself. Using a tried and true REAL homemade lemon filling.

Dessert at our house on Friday. C'mon over after supper.

Oh, and Terese? I'll leave the meringue off the pie just for you...

Look At This: Plaquenil Toxicity

Image found here. 

A reader recently emailed me with this question:
I have been on plaquenil for 11/2 years and am one of the few with visual toxicity. I have been told this will not improve, yet in reading your blog it says stopping med will help reverse effects. Is this true?

I'm guessing that the information regarding reversal of retinal toxicity that he referred to was found in my post in which I quote Dr. Neil Stahl from the Jan/Feb 2011 issue of the Moisture Seekers, the Sjogren's Syndrome Foundation's newsletter: "Luckily, the pigment deposition and any visual loss are completely reversible with discontinuation of treatment with HCQ."

The reader's question and comment prompted me to do a little more research on the question of whether plaquenil toxicity was reversible which led me to the results of this study, which was published in JAMA Opthamology Jan 2011 -- the same month and year as the Sjogren's Syndrome Foundation article was published.  The study authors concluded: "Sustained visual improvement following cessation of drug therapy was not observed in any patient in this series, and our identification of 6 patients with objective evidence of progression serves to remind physicians of the potentially devastating visual consequences of antimalarial-related retinal toxicity. It is also of note that profound abnormalities detected with visual field and multifocal electroretinography testing can be observed in the presence of a normal macular appearance, and our findings suggest that lean body weight should be used for all patients when calculating daily dosage."

So it would appear that there are differing views on the subject. Polar opposites, as a matter of fact.

I need to dig even further into the research. This is a very important issue since plaquenil is frequently a first line medication in the treatment of Sjogren's syndrome and Lupus.

.::As always, please do not discontinue or modify the use of your medications before discussing your concerns with your physician::.

Sweating and Sjogren's Syndrome

Ooo. This moisture-wicking shirt made by Columbia looks comfy.

I received this interesting question the other day:
My question relates to your recent post where you mentioned the sweats.  About a year ago, mine started.  Any kind of activity - normal housework, let alone gardening in any kind of weather, can bring on horrific upper body and head sweats.  It literally drips off of my head, leaving me with a soaked scalp and a need to wash my glasses.  I also have night sweats and often have to change my PJs during the night.  And yes, they are for the most part, cold sweats.  My rheumatologist has not said that they are related to my SS diagnosis, but I take it from your post that you consider then as a symptom of the disease.  I was wondering if you could give me a little more insight, and if you have any recommendations for what helps you.

Ah. Perspiratory problems.....I've written about this a few years ago and was ready to send off a link to my old post, but after thinking a bit more about it added a few tidbits.  Here's some excerpts from what I told this reader:

I can't say with absolute certainty that my profuse sweating is directly related to my Sjs, since many many other things can cause these symptoms, see this from MayoClinic.com.

But it's highly suspicious since I couldn't blame menopause or perimenopause due to a removal of my ovaries with a hysterectomy back in 2000. Another common cause of sweating in sjoggies is the use of the drug civemeline, which stimulates saliva production but also induces sweating. I don't use this or similar medications so I can't assign blame there.

When I told my dr. that I was experiencing sweating, especially night sweats, he ran some bloodwork that would check for lymphoma; since although still rare, sjoggies are nine times more likely to develop lymphoma than the general population. He also checked my medications and discussed my specific perspiration patterns.

It's interesting that anhydrosis, an absence of sweating, is occasionally an autonomic nervous system complication of Sjs. You can read more about anhydrosis here. If it affects large parts of the body, it can be problematic if the body can't effectively cool itself when overheated causing heat stroke. While I seem to perspire profusely from my face, chest, scalp, and front of my legs (go fig!) I have found that I no longer sweat under my arms.

So after eliminating the biggies -- lymphoma, drugs, and menopause, it appears that my perspiration is one of those symptoms that is very bothersome but at this point rather benign. Lately when I complain about it to Dr. Young Guy about my sogginess I always say: it's so WEIRD. To which he will just reply: "Yep. It is."  And that's the end of our discussion. Which is the same response to the same discussion that my other rheumies have given. Hehe. I'm OK with that since addressing anything in autoimmune disease generally means adding another medication to my morning mountain of pills and I'd rather avoid making the pile any larger.

I've resigned myself to just lugging around lots of Kleenex or hankies wherever I go. I use the most waterproof make-up that I can find on those few occasions when I wear it. I have learned to love cotton underthings and other fabrics that wick moisture. It seems that clothing that is mostly polyester or other artificial fibers cause me to sweat more than other fabrics do.

I would definitely discuss this with your doctor, however, if those exclusion of causes have not been made, especially if your night sweats are severe enough to require changing nighties.

What I Want for Christmas

These gorgeous hand knitted works of art were made by my own D#2 in a project that she called "using up leftover yarn".

I don't know from whom she inherited this amazing talent. It certainly wasn't ME.

Time to Pay the Piper

Whoa.

I'm definitely at the low point of my rituximab energy cycle, which is no surprise. It's not a surprise -- yet it's still not fun. I expected this. I have anticipated this feeling, which is similar to what I'd imagine strapping on concrete shoes would feel like. I knew it was coming but still don't like leaving church early because I was either going to have to lay down on the pew or lay down in the car or....I didn't know what. I don't like carrying kleenex around everywhere because suddenly any kind of exertion at all, even something a simple as carrying some laundry up a flight of stairs causes me to start mopping away the sweat that drips from my face and the back of my neck. I hate constantly feeling shivery as if I was running a temperature. Dumb stupid brain fog episodes happening more frequently is not a happy thing.

In other words, it's payback time.

Ah, yes. There's definitely a price to pay for those four months of increased energy, and whoever or whatever is responsible for that fee has appeared to claim it. With interest. Bummer.

I need to keep reminding myself that this butt-draggin' crankypants sensation will lift eventually after my next infusion, which is due somewhere around the end of the month.

C'mon mousie drugs. I'm ready and waiting.

"Julia Speaking. How May I Help You?"

No good deed goes unpunished, really. Truly.

So Terese called me in a panic the other day. "Where are you?"

I'm in the grocery store.  I was mindlessly roaming around the store trying to think what to make for dinner.

Where are YOU?

"I'm at work. I need to run over to church and play the piano for Mass soon but I don't have anyone to cover my phones for me here at the church office. Could you......?"

Sure. I'll come over.

"Great. I'll leave a note explaining things for you. You don't have to do anything but answer the phone. And it's only for thirty minutes then you can leave."

So I pointed my cart toward the nearest checkout stand and within minutes found myself sitting behind our church's office desk with nothing -- but NOTHING -- to do. The phone was boringly silent. There was nobody in the office except me. After playing solitaire on my phone for fifteen minutes, I decided that there certainly could be more productive things to do. Surely. Terese was just being too kind to ask me.

I decided to invent a few tasks for myself after I shamelessly pulled open one of her desk drawers and spied a stack of blue post-it-notes.

WELL, now. Post-its are for making useful information easily visible, I thought. I grabbed a pen and began writing useful and informational post-it notes such as:

Be Thankful For Your Friend Julia splat in the center of the computer screen
and
Ewwww. Used kleenex? Really?? next to a wad of tissue
and
It's Called Delusions of Grandeur on a framed certificate on which her name was printed prominently
and
An air freshener? Why?? next to an air freshener(...duh.)
and
Don't Forget To Add Julia's Birthday on the office calendar right next to all the saint's feast days
and...
and...and....
Dang. I realized that my half hour was up and I was expected to lock the office for the lunch hour and leave. There was no telling when Terese would be back and catch me blue-post-it-handed, so I reluctantly tucked what was left of the post-its back into the drawer, grabbed my purse, locked the door and left. As I drove home I thought of a zillion other very useful and extremely informational post-it notes that I could have left.

Wasn't that nice of me? Didn't I do an ENORMOUS favor for Terese? Aren't I just the best-est friend EVER?

Well. Apparently not. Since within minutes of arriving back home, this came into my email:

On official church email letterhead. One hundred fifty-five dollars? For one measly stack of post-its? Is this gratitude?! I think not.

Pfffft. No way, girlfriend. She's getting my half used stack of schnauzer sticky notes. So there. I'm sure everyone receiving an official church document would love to see a cute little schnauzer sticky attached.

Ok. They're actually not particularly attractive, I'll admit. Which is why I'm giving them away. 

I wonder when if I'll be asked to help out in the church office again? Gosh, there's plenty of other tasks that I could do.

Your Comments Were There

I used my little corner in our study for a backdrop. I even threw away all the old water bottles and junk. 

Well. I NEVER.

After yesterday's incredibly ARTISTIC sketch which linked very CREATIVELY to an impressive and timely study about immunity, I got this email:

"What are you doing about your report from your stint at the nursing school, are you writing an Opus or something? Stop your cute doodling Missy and get us that report. What did you say? How were you received? Did you have fun?"

Sniff. CUTE DOODLING? I spent at least THREE MINUTES on that work of art, I'll have y'all know. And...and...didn't you think that Lulu's erm...illness....was more important? You don't?

I did promise to tell y'all about the panel discussion that I participated in this week, so I really should do that. Especially since you -- my awesome readers -- were actually there too.

How so?

I took all of the feedback that you sent for me in answer to my question: If you were given an opportunity to help educate health care providers, what would YOU want your future nurses and doctors to know?, removed everyone's name and identifying information, and gave them to the other members of the panel who were very impressed with the quality of your responses. Your quotes were inserted into various points in our presentation.

And they were excellent quotes, I might add.

The panel consisted of three of us with invisible illnesses and one moderator. We presented to a group of student nurses in various stages of earning their degree in Philadelphia, PA. Since I was sitting here wearing my bunny slippers all the way across the country, I participated via Skype......so my face was plastered up on a screen in front of the audience. Yikes. Meanwhile, the two other young and gorgeous gals appeared in person.

We began with an explanation about why the topic of "Effective communication with ePatients" was important to these students (and a few instructors, as well) by sharing our personal stories. We had unfortunately several incidents to relate in which communication was not "effective" in our care. But I also was able to share examples of very successful patient/caregiver interactions as well and they were interested in hearing all about Dr. Young Guy. The fact that I represented not only ePatients, but also the care provider side of the equation being a retired RN sparked some interesting conversations.

We were extremely well received. Especially since the Pennsylvania Student Nurses Association provided free pizza to the attendees just before the event.

Hee.

But in all seriousness, it was a lively discussion that could have easily surpassed our one hour time limit. Several students approached the panel after we had finished to thank us for coming and add their own experiences.

I have a renewed sense of optimism about the future of our health care system if this wonderful group of men and women are representative of upcoming caregivers.

And, yes. I had fun!

Study: T Cells Communicate in Clusters

Sketch mine. Um. It's harder to draw gossiping T cells and a water cooler than I thought. 

Sjogren's Forum tweeted a link to this fascinating University of California San Francisco interview of senior scientist Matthew Krummel, PhD, UCSF professor of pathology regarding the results of his recent study:

Immune Cells Cluster and Communicate ‘Like Bees,’ Researcher Says 

They don’t bust the same moves as bees, but T cells gather together and communicate essential information to each other in a similar way, Krummel said, thereby helping to coordinate immune responses directed against invading pathogens. This discovery might lead to useful therapeutic interventions to fight disease, according to Krummel.  .....Conversely, Krummel speculated that in case of autoimmune disorders, such as diabetes or lupus, “it might be possible to attenuate the immune response by blocking the formation of a memory pool.”
Results of the study were published online March 10 in Nature Immunology. (Bolding mine)

So.....if I'm understanding this correctly, and please go read the article in it's entirety, it's very good; my T cells hang out  together around the Julia office water cooler and gossip every day:

Krummel’s lab team found that after individual T cells survey lymph nodes and sample foreign matter, such as vaccines, bacteria or viruses, they come together as a group during what he and his team call the “critical differentiation period.” This occurs several hours to one day after exposure.
“They cluster together for the purpose of sharing information, transmitting what they’ve discovered about the new pathogen or vaccine, which in turn helps the immune system mount a coordinated response to the foreign matter,” Krummel said.

I can just imagine the conversation: "Did you SEE the virus that T cell Agnes was checking out yesterday? MmMmMmMmMMM!"

"No way! Just last week she was all over some wild bacteria chasing around the jejunum."

"Ooo, that girl does get around..." "Let's go check out this virus dude....she says he's pretty hot.."

This answers a LOT of questions that I have about my errant T cells. I just knew it -- they've been slacking off on company time hanging around and yakking. Dr. Krummel hypothesizes that "blocking the formation of the memory pool" may slow down autoimmune activity.

So get back to your cubicles, you bunch of gossiping T cells. NOW. I want to see far fewer memory pools around here.

Or there will be NO Christmas bonuses.

Here's the Scoop

As promised, here's yet another doofus doggie story, and in this one, Lulu takes center stage.

Poor little pup.

Ever since we brought kitty Genevieve home, we've kept a child-gate in place to keep the dogs from eating Genny's food and/or investigating her litter box. I was scrambling around the other day trying to put Genny into her kitty carrier for her check-up with our vet and so removed the gate without replacing it.

Oops.

So while Genny and I were celebrating (well, I was anyway....) her perfect x-rays and clean bill of health, Lulu decided to check out -- and apparently eat a bunch of -- the cat litter. The super-absorbant clumping kind. The kind that I now know is very dangerous if anyone or anything actually eats it. I don't even want to know if she ate anything else that she found in the litter box. Shudder.

 I read a veterinarian's blog entry entitled "Clumping Cat Litter Can Kill a Dog" with all the disgusting details about a particularly gross incident of cat poop and clumping litter ingested by a Bassett hound here, and if you have a strong constitution, you can too. Eww. I wouldn't recommend it.

A few hours after Lulu's snack, it became obvious that she was not feeling well, poor baby. In her case, she was able to pass the yukky stuff on her own but is receiving antibiotics and probiotics to heal her little innards. I'll spare y'all the gruesome details but let me just say here that I'm very glad that my bed and most of our furniture was unscathed in this little poopy incident. Ah, geez. Another trip to the vet.....

Later as I was recounting Lulu's symptoms to our vet, who is a young mom, she shared with me that she knew all about the problems with ingesting clumping cat litter since her two year had recently done the same thing.

HER DAUGHTER ATE CAT POOP AND LITTER. AND SHE'S A VETERINARIAN. AND SHE ACTUALLY TOLD ME ABOUT THIS. I love her.

I'm glad to report that both our vet's little girl and Lulu are feeling considerably better and it appears that
neither were irreparably injured. Thank goodness.

I don't want to talk or even think about it any more. Bleah.

Knowledge Tidbit of the Day

I felt guilty about Lulu getting into the cat litter until my vet told me that her little DAUGHTER did the same thing. 

Y'all ready? Here it is:

It is not a good thing for schnauzers to eat clumping cat litter.

Yeah. And now Lulu and I know what a bad menu choice for woogies that can be...

Tomorrow, I will tell you all about this exciting adventure as well as fill you in on the details of Tuesday's panel presentation for student nurses.

The presentation? Awesome! Lulu and the litter box?

Not so much. See you tomorrow.

Discuss this....

Image found here. 

Remember awhile back when I asked this:

• Do you consider yourself an ePatient? (Patients who are educated, empowered, equipped, and engaged in their care)
• 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 were terrific, and today I will actually be able to pass your suggestions and comments on as I participate in a panel that is addressing a student nurse convention. Our topic is: The ePatient. 

You have made yourself very clear: today's patients have enormous resources at their fingertips to learn more about their bodies and diseases and medications, and they're using them. Gone are the days of the passive patient meekly allowing others to make health care decisions without their direct participation and input. 

Thank you for making my role in this panel discussion much easier: I am armed with your invaluable insights and am looking forward to hearing what these bright young people have to say. 

I'll tell you all about it in a few days. Think non-stuttering, no-brain-fog thoughts for me, OK? 

A Therapeutic Ocean

I've written about this before, but it's true: I always, but ALWAYS feel better when I'm standing at the edge of the ocean.

If I'm feeling great -- with my toes in the sand, I feel
even better. If I'm feeling lousy -- after a few lung-filling breaths of sea air, my breathing is more improved than if I had taken a few hits from my inhaler.

I breathe better. I am calmer. I am more patient, more introspective, and more mellow.

I think that breathing all that wonderful refreshing salty air rejuvenates my lungs, and the rhythmic pounding of the surf lulls me into some kind of new-and-improved-Julia state.

Ahhh. Better than any pharmaceutical ever concocted.

We had the place almost all to ourselves. I was amazed.  

 A sand work of art by an anonymous artist. 

What a great find! I left it there for someone else to discover.  

 After Mass, we walked right down the front steps and onto the beach. Inside and outside spirituality. How cool is that? 

More Sunday

An Early Sunday Post

Yesterday, the day dawned beautifully clear, sunny and just begging for us to abandon our plans for doing laundry and washing windows.

So we did. We threw the schnauzers in Goldie and headed for the coast.

Ahhhhh. Renewing, fresh ocean breezes and blue skies.....

See y'all tomorrow.

I'm Baa Baa Baaaaaccckk!

I believe Terese gifted this little baa baa to me about five years ago.

Ahhh.

It's so good to be feeling GOOD. Well, not completely and totally pre-sjogren's good, but y'all know what I mean. I think I'm finally out of my flare, and just in time for Easter.

I love Easter. Of course, I love all of the holidays, and I am appreciative of the reason for the season, but when you get down to the nitty gritty -- I'm a sucker for bunnies and lambies and chickies. And pastel-colored eggs and CANDY.

I was digging through my Easter junk tasteful home decor items yesterday, and was delighted to see that this little sheepie (lambie? goat? kid?) puppet's batteries were still working. Kind of. The dogs are reserving judgment on this thing. Lulu in particular looks a little concerned about any fuzzy toy that she's not allowed to nom nom.

Sjogren's Syndrome and Trigeminal Neuralgia

Image found here. 

::facepalm::

Good grief. I shouldn't be surprised, EVER, by a reader telling me that her physician informed her that Sjogren's syndrome is just dry mouth and dry eyes. I've read and heard and seen this repeatedly.

But I am. I feel surprised and disappointed and somewhat cranky. Every single stinkin' time.

Case in point: A reader recently asked me if her trigeminal neuralgia pain could possibly be related to Sjogren's syndrome. She was hesitant to ask her rheumatologist since "He just thinks Sjs is dry eyes and mouth, so quit whining."

Grrr. Breathe, Julia....just breathe.

Trigeminal neuralgia, or tic douloureux (gosh I haven't seen that term for TG since the '70s) causes pain or numbness in the face, specifically in the areas which the trigeminal nerve -- also known as the fifth cranial --  innervate. It can cause a variety of symptoms, some of which are described as pain that is stabbing, electric-shock like, numbness, or burning. You can read more about TG here.

To answer the reader's question, I sent her links to several studies and reputable information sources that do indeed connect Sjogren's syndrome to this disorder as one of the many neurologic complications of Sjs:


A PRIMER ON THE NEUROLOGICAL
COMPLICATIONS OF SJÖGREN’S
By Julius Birnbaum, MD
Johns Hopkins Neurology-Rheumatology Clinic

"....Sjögren’s syndrome can cause numbness or burning of the face, called “trigeminal neuralgia.” Pain in the back of the throat, which may worsen while swallowing, is called “glossopharyngeal neuralgia.” Patients with trigeminal or glossopharyngeal neuralgia can have agonizing mouth and facial pain. These neuropathies may co-exist with other neuropathies in different parts of the body. For example, up to 20% of patients with a “small-fiber” neuropathy may also have trigeminal neuropathy.
Medicines which may help alleviate symptoms in small-fiber neuropathy may also have efficacy in trigeminal neuralgia. Such medications may include a class of agents which are typically used to treat seizures, and include gabapentin, topiramate, andpregabalin. In seizure disorders, paroxysmal and irregular bursts of electrical activity in brain nerves may lead to propagation of seizures. Similarly, in Sjögren’s neuropathy, irritative electrical signals produced by nerves in the skin instead of the brain, may similarly contribute to pain. Just as anti-seizure medicines can dampen electrical activity of brain cells, the dampening of electrical activity produced by pain-fibers may ameliorate burning pain. It is important to note that use of these symptomatic medications does not target the neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered."
(bolding mine)

Here's another:

Clinical Summary 
Sjogren syndrome: neurologic complications
Contributors:
Gustavo C Roman MD, author; Pedro J Ruiz MD, author; Raymond P Roos MD, editor.

".....Mori and colleagues reviewed 92 patients (86% women, mean age 60 years) with Sjögren syndrome and found the following varieties of neuropathy: sensory ataxia (39%); sensory painful neuropathy (20%); trigeminal neuropathy (17%); multiple mononeuropathy (12%); multiple cranial neuropathies (5%); autonomic neuropathy (3%); and radiculoneuropathy (4%) (Mori et al 2005)."(bolding mine)

And ANOTHER:

Neurological Manifestations Of Sjögren's Syndrome
Steven Mandel, M.D.
Clinical Professor of Neurology
Jefferson Medical College

"Trigeminal sensory neuropathy can occur and may be characterized by progressive sensory complaints on the face. They are generally spontaneous and nonlancinating. They could start on one side and subsequently become bilateral. They may be progressive over months to years."

One could wonder why, once the diagnosis of TN is established, it would be necessary to link the cause to Sjogren's syndrome.

Here's why: Because common medications used to treat TN address the symptoms, not the cause:

It is important to note that use of these symptomatic medications does not target the neuron-inflammation which may be contributing to neuropathy. In such cases, judicious use of immunosuppressant medications should be considered.

Need more? There's zillions of good, recent studies out there. So. Are there neurologic manifestations in Sjogren's syndrome including trigeminal neuralgia?

YES.

Does Sjogren's syndrome affect more than the eyes and the mouth?

GAAAAAAAHHHHHH! YES!

It would appear that the Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center would agree, seeing as it brings together the expertise of rheumatologists, neurologists, ophthalmologists, dentists/oral surgeons, gynecologists, and otolaryngologists to treat this disease. Hm. I wonder why they would need a neurologist on staff seeing as "it's only dry mouth and dry eyes?"

Excuse me while I take out my frustration by pounding my head against the nearest wall.

::thud thud thud::

You Know You're a Sjoggie if.......

Sandy, author of the SjoDry blog, has created a very amusing video entitled "You Know You're a Sjoggie if....."

You can watch it here.

Enjoy.