Falling With Grace: She's Down.....No, She's Up!

Read this from 'Falling With Grace' for a great metaphor on Sjogren's flares:


I'm down on the mat and Sjogren's has me in a choke hold. I'm waiting for the ref to call it. He'll grab Sjogren's hand, raise it high in the air and declare it the winner.

The plastic mat smells funny but I don't care. With my face smashed against the stinky hard mat, I will play dead until they bring over a stretcher or something.

I'm toast. Done. Surely someone will notice me all sprawled out on the mat, right?

No? Seriously? Continue reading here..

I'm Too Full To Type...

.....so y'all have to look at pictures instead. See you tomorrow.

Thankful

Here in the United States, we are celebrating Thanksgiving today.

I love this day not only because of the deeeeliccciiiioooouuussss food; but also because my soul needs to be reminded of all the good things around me.

Enjoy this as you are counting your blessings. And know that y'all are definitely numbered among mine.

He's At It Again

I know, I know.

This is a blog about Sjogren's syndrome but I just can't bring myself to focus on stuff like that when stuff like THIS is going on in my house:

Remember when I said that the nice UPS man was lugging big boxes onto my porch? Now I know what was in all those heavy brown packages: the innards of my son's new router/controller for this year's Christmas light show. I find myself hiding out in the study in front of my computer nervously playing Bejeweled while I try not to pay attention to Son's ongoing commentary as he's wiring and soldering and circuit testing IN MY KITCHEN in a blissful electrical frame of mind:

Stand back! I'm going to attempt SCIENCE!
and
Famous last words: WATCH THIS! BAHAHAHAHAHA!
and
dang.........
and
.::rustle rustle rustle rustle::. Now where did that thing go.....hm.....
and -- my favorite --
.::singing with gusto::. Aaaahhhhhhhh-le-lu-ya! Aaaaaaahhhhh-le-lu-ya!

Apparently things are going well when I hear snippets of Handel's Messiah.

Stay tuned.

Roast the Turkey and Unpack the Lights

Ahhh. It's almost Thanksgiving. Y'all know what that means around our house, right?

Yes. Turkey and stuffing and cranberries and pies pies pies pies....Mmmmmmmm......

More importantly, though, Thanksgiving heralds the beginning of the annual Christmas light extravaganza. John and Son have already been hard at work; they're taking advantage of this lovely clear crisp weather by setting up everything that they can get their hands on.

For the last few years, these two have told me the same thing:

"OK. That's everything -- we won't make this show any bigger than it already is!" said with completely straight faces and sincere We-Really-Mean-It-This-Time expressions.

Silly me. I actually believed them. Then stuff like this began to appear in big boxes lugged over to my front porch by the UPS man:

And strange new graphics appeared on Son's computer:

That's the 'Twelve Days of Christmas'. Can't you tell? Me either.

Pinky can't wait for the switch to be thrown and to resume his star billing in the light festivities.

He says he needs a new Santa hat this year. I think we can swing that, big guy. And we'll be sure to unpack the Pinkettes too:

'Tis the season! Love it.

Turnabout is Fair Play

Yeahhhh. THAT's the stuff. Found here. 

Yesterday I found myself in Goldie zooming towards the emergency department.

Don't panic. Everyone is OK.

Instead of me riding along plopped in the passenger seat, this time I was driving and trying to keep the conversation light. Although I felt sympathy for my passenger, I also felt a kind of guilty relief.

It's not fun being on the receiving end of urgent medical care all the time. But it does feel good to be able to assist others when needed.

I would never wish health problems on another, but when the occasion and need arises, it's nice to put my own body's wah wah wah stuff aside and deal with another's.

Yay adrenaline.

Bummer

That's the one on the right. 

Aw. My buddy ol' pal Terese is under the weather. Let's all send healing thoughts and prayers her way.

Girl. You simply have to be better by Thursday.

I mean, if you don't come to Thanksgiving dinner at my house, who is going to bring your famous and irreplaceable chocolate chip pecan pie, hm? And the green bean casserole?

.......Oh, and we'll miss YOU too........

Frizzville

So, guys. Spill. Share some of your styling tips and tricks here with me, people..... because I'm ready to pull my hair out. Literally and figuratively.You my recall the catastrophic haircut incident awhile back (and of which I never want to speak again).

.::sob::.

It's been six whole months since the day I made that bone-headed decision to do a 'walk in' haircut, and in spite of me forcefully willing each hair follicle to sprout yards and yards of hair, well. Things aren't good, coiffure-wise. First of all, my follicles simply aren't cooperating. It seems that they didn't get the grow-hair-stat memo. But then, nothing that comes out of my head (or brain) is particularly quick these days...

Secondly, what little hair has grown back is sproingy with untamable curls. This would be great if those curls were shiny and healthy looking, but no. They're dull and dry. And frizzly beyond belief.

And finally to add insult to injury.....my new hair has plenty of grey. These grey hairs add a whole other weirdo dimension in that they are kind of coarse and stiff. And tend to stick up in the strangest places.

Dumb stupid hair. The only reason it's relatively straight in the pic is because I wasted my morning spent considerable time blow-drying this mop. Wah. Wah wah wah wah wah.

Aside from wearing a hat or a paper bag over my head for the foreseeable  future, what do y'all suggest to tame this unruly beast? What is your favorite strategy/product/styling tip? Is your hair as dry as mine? And if so, are you being as big of a whiney-butt as I am?

Living With Fatigue: A Constant Learning Process

Creative Commons image found here. 

After our latest organize-everything-within-sight episode, John and I have accumulated a sizable stash of junk useful things that we felt would be appropriate to donate to a local charity. So last night, John loaded up everything into our SUV and my goal for today -- my only task for the day -- was to drive it over and let the volunteers unload it.

Simple. Yes?

No.

These escapades have depleted a fair share of my energy stores, and instead of gritting my teeth and just planting my big old hinder on the couch for a day of rest here and there, I just keep blundering on. So it should not have been a surprise to me this morning in preparation for heading out to the donation site after taking a shower, blow drying my hair, and getting dressed I would feel as though I should just crawl back into bed and pull the covers over my head.

Which left me feeling not only exhausted before the day even began, but cranky as heck. I grumbled my way downstairs and looked longingly out the window at a rare beautiful sunny clear day. I thought it was a real shame that I should have to waste those wonderful blue skies away by snoring on the couch.

SOMEDAY, I thought. Someday I won't have to treat my body as if it were a very old broken down car with only fumes of gas left in the tank.

Snarl.

Ah, but then the cosmos or whatever it is that keeps this planet spinning intervened as I shuffled into the study and booted up my laptop. I had saved a quotation from Saint Catherine of Siena (1347 - 1380) on my desktop and inadvertently clicked on it. Here's what appeared:

All the way to heaven......is heaven.

Whoa. This was not only food for thought, it was a seven course MEAL for thought. I realized that I need to begin to search for my own earthly heaven while on energy-dictated house arrest. Was it possible that I could find a little piece of paradise in a rusted-out empty-tank model T body?

I guessed that I should try very hard to do just that.

St. Catherine. Girl. You are THE MAN. Wait...no....you are THE WOMAN.

You can read more about this inspirational and powerful woman here.

Autoimmune Gal: "A New Dawn for Sjogren's"

Autoimmune Gal's recent post about her experiences with neurological pain is definitely worth a read. Here's a smidgeon of her post but head over there to see the whole thing:


It was a good week for Sjogren's!  Three important articles that I saw in just one week.  I'm always pleased when I see more scientific research and attention being brought to the disease for us Sjoggies and I do hope this is a trend. "A New Dawn for Sjogren's":  I couldn't resist the headline from The Rheumatologist.

This article was particularly relevant to me since it linked Sjogren's and inflammation to local neurological pain. As most of you know, I have significant neurological symptoms with my disease. For a long time that was a real problem. Neurologists couldn't figure out what was wrong me and I ended up being prescribed pain drugs and basically told to go away. [Continue reading here].


Bonus: An awesome I-don't-know-what-to-call-it-thingie that shows a beautiful sunrise over and over and over..

Study: Plaquenil Use in Sjogren's Syndrome

Image found here. 

Plaquenil, or hydroxychloroquine, a DMARD [Disease-Modifying Anti-Rheumatic Drug], is often one of the first medications prescribed once a diagnosis of Sjogren's Syndrome is made. I have been taking this drug for ten years. For me, it seems to decrease some of the joint pain and overall malaise associated with Sjogren's syndrome. So I was interested to see that this commonly used medication was the focus of a recent study found here:

Salivary and serum B-cell activating factor (BAFF) levels after hydroxychloroquine treatment in primary Sjögren's syndrome.

Mumcu G, et al.  

Journal

Oral Health Prev Dent. 2013;11(3):229-34

PURPOSE: Some evidence implicates a role of hydroxychloroquine (HQ) in the management of Sjögren's syndrome. This study evaluated the effect of HQ on saliva B-cell activating factor (BAFF) levels as well as health related quality of life (QoL) in patients with primary Sjögren's syndrome (pSS).

CONCLUSION: Salivary and serum BAFF levels were lowered in patients with pSS when treated with HQ. In addition, decreased disease activity and increased salivary flows can be achieved with HQ in pSS patients. (Bolding mine). 

Interesting. BAFF or B cell activating factor is thought to be an important link in the immune system. It's part of a very complex chain of events, but here's a simplistic explanation, found here:  An excess of BAFF leads to the development of autoimmune disorders in animal models, and high levels of BAFF have been detected in the serum of patients with various autoimmune conditions.

Plaquenil induced reduction in BAFF levels may indicate a decrease in autoimmune activity, which is a very good thing, needless to say. Plaquenil use is not without side effects and risk, but for those of us able to tolerate it's administration, studies such as these help us understand what the mechanism of it's action actually is. 

Tom Sawyer Would Be Proud

You can buy your very own Tom Sawyer plate here. 

Who knew that some people would find cleaning my house to be as much fun as a barrel of monkeys?

After the pantry cleaning incident, John dove into the organizational waters and muscled his way through two utensil junk drawers and the paper cupboard. My friend Karen is coming to visit in a few weeks -- yay! -- and emailed me the request to 'Save some cleaning for me!  I LOVE to throw things away; I mean organize.'

Naomi has volunteered to come tomorrow and we'll scrub down the outside of my kitchen cupboards.

Even Greg has gotten into the act. He and John were standing on the church steps on Sunday pondering which cupboard THEY should clean out next. MmmHmmmm.... you can just bet this particular cupboard contains adult beverages among other things...

I should have thought of this years ago. What was I thinking?

Hey. Since everyone around here finds this so entertaining, I think that I should charge a significant fee for the privilege of sifting through my junk. Brilliant!

So, Terese? If you want to clean out my linen closet, it'll cost ya. Just sayin'.

Therapeutic Balloons

Doctor Julia prescription:

Rx: Watch This Video
Dosage: One dose STAT, then watch as needed; minimum of once daily. No maximum dose possible.
Indications: For the treatment of

• crankiness
• anxiety
• grumpiness
• excessive scowling
• oooooo and ahhhhhh deficiencies

Found on the excellent website 'The Kid Should See This', found here.

Round Two

When my friend Naomi came over last week and cleaned my pantry, she started something. After looking into a tidy pantry, suddenly every other kitchen cupboard and drawer looked completely disastrous. Even though my energy levels were pretty low over the last few days, I just couldn't STAND myself until another big ol' chunk of kitchen disorder was tamed. I mentioned to my friend Emily that it was time to conquer more cupboards. She was quick to point out that one cabinet in particular was in serious need.

"Every time I pull something out from where you store paper plates and stuff, it all falls out on my head!"

Hm. She had a good point. Even though watching Ems get a Chinet shower occasionally was good entertainment, the paper cupboard was next, I decided. So Saturday, John dragged everything out of there. And it turned out that there was a lot of stuff packed in THERE.

This is his "gee I'm happy to be cleaning" smile.

Yikes. What a pile of stuff. 

This go-around, the oldest item was leftover paper napkins from when I had a Confirmation party for one of the kids. Could be any one of the three -- I don't remember which. But considering that it would have been back when they were in junior high and all since have graduated high school AND college several years ago....zoiks. These things could be as old as 16 years.

At least this wasn't a food product unlike my 11 year old can of corn from the pantry adventure. And yes, these paper plates and napkins and cups were unused. Silly people. Tsk.

I slaved away by supervising from the recliner. Hard work. 

Actually this project went quick as a whistle since I didn't care about outdates [at least I don't think paper plates outdate]. We sorted everything according to holidays, stuffed them neatly stacked them into clear plastic containers and.....

Presto chango. No more episodes of 'Let's Dump Paper Plates on Emily's noggin'. Awww. I'll miss that in a weirdo kind of way.

Let's Get This Season Started

Festive. Found here. 

Well. NBA basketball is in full swing - go Portland Trail Blazers! - and the beginning of Advent and Christmas shopping is just around the corner. Here's a little something that combines both of these delightful seasons. Enjoy.

Be Informed. Be an Advocate

I recommend this one, for starters. Image found on Amazon. 

I received this amazing email from my nurse friend Kathleen yesterday:

This week we had a patient for knee replacement, who had Sjogren's.  I have learned so much from your Blog, I was able to share with nursing/PT staff to give them insight into some of her needs.  She was so appreciative to have someone who had not only heard of the disease, but understood some of the symptoms she has. 

Woo hoo! THIS is why I blog.

Guys. Awareness of this disease is vitally important. Not everyone's strength lies in blogging, but you can use YOUR strengths in other areas to promote awareness of and education about Sjogren's Syndrome and other autoimmune diseases. There is an estimated four million people out there with Sjogren's syndrome. If each of us educated even one person about it..... my goodness. What a difference that would make.

It is hard to explain Sogren's, I get that. Sometimes my brain fog makes finding those important words difficult. And in certain situations it's just not an appropriate subject for discussion. But whenever the opportunity presents itself, be prepared. Take time to educate yourself about your disease, then take the time to educate others when you can and when it's appropriate.

Check my sidebar on the web version of Reasonably Well and  follow the numerous links to excellent patient education materials from the Sjogren's Syndrome Foundation that put some of the very complex concepts of our illness in a relatively simple format. I have also included links to other reputable sources of information, and other Sjogren's blogs as well. Print out a copy of the excellent article written by sjoggie Sarah Schafer, MD published in The Rheumatologist. Read books about autoimmune disease and Sjogren's syndrome.

Go get 'em sjoggies.

The Rheumatologist: A Physician–Patient’s Experience With Sjögren’s Syndrome

Here's a link to an excellent article entitled "A Physician–Patient’s Experience With Sjögren’s Syndrome", published in The Rheumatologist written by Sarah Schafer, MD. Her bio as listed in the article:

Dr. Schafer is a patient with Sjögren’s and an advocate for the Sjögren’s Syndrome Foundation. Previously, she was a public health physician focused on child health, family planning, and STD for the city of San Francisco and Contra Costa County.

Dr. Schafer has been severely impacted by our disease:

...what impacts my life the most is the disabling flu-like fatigue that is seen in 70% of primary Sjögren’s patients. This is not normal exhaustion that can be managed with rest and recovery. Because of fatigue, I have had nothing resembling a normal life for the past 11 years.

I have posted one of my favorite paragraphs here, but head over to The Rheumatologist to read the entire article:

.....Perhaps the greatest stumbling block to making the diagnosis of Sjögren’s is the self-perpetuating bias of the medical community that we are just not that sick. This was what I was taught in medical school. This notion seems to ignore the 20–40% of patients with severe systemic manifestations. Pain, fatigue, gut dysmotility, and neuropathies are not considered to be severe manifestations. Yet, these extremely common features are frequently far more debilitating than dryness. Many rheumatologists focus on dryness, often ignoring the extraglandular symptoms, particularly fatigue. Almost every Sjögren’s patient I know has heard some version of, “Just be glad you don’t have lupus.” This is about as sensitive as telling a breast cancer patient to be glad that she doesn’t have ovarian cancer. We have an illness that can turn our lives upside down...

We're All Wet

Drying off on the couch. 

Gee. Sometimes I have the darndest ideas.

Remember the prune pop incident? Hey. Don't judge me here, people. I am what I am.

Yesterday I had another one of those. Ideas, I mean. I had a bunch of stuff that I wanted to get done which all included water:

• I needed a shower badly
• Lulu needed a bath badly
• The shower needed to be cleaned....badly

So I thought I'd just do everything at once. And I did. I peeled off my clothes, took off Lulu's collar, and started the shower.

You know....it didn't work out too badly. Really. The shower isn't sparkling but it has the latest layer of grime scrubbed off, so do I, and so does Lulu.

Not bad.

Lulu wasn't impressed. As a matter of fact, her reaction to the whole thing was remarkably similar to this little woogie:

Monkey Business

Cutie pie chimp found here. 

So I was sitting in the dentist's office yesterday waiting for my teeth cleaning appointment. My hygienist was running late because the computer system had gone down, so I was passing the time by texting with my sister. It went like this:

Sister: It's snowing here! Blah! Blah blah! I hate winter blah blah blah!

Me: MmmHmmm....

Sister: So, what's going on over there?

Me: I'm watching a chimpanzee brush his teeth.

Sister: No, really. Whatcha doing?

Me: Seriously.

I was not exaggerating or fabricating. Honest. Our dentist has a flatscreen TV in his office and runs a non-stop dentist channel. Who knew there was such a thing? And someone somewhere thought it would be a good idea to make a film that explains proper brushing technique using a chimpanzee.

Um. Did you know that chimps only have a few front teeth? Well, at least this chimp only had three.  And that those teeth aren't particularly attractive? And -- for real -- that you're not supposed to brush your teeth while laying upside down?

I know, I know....it was probably written for children. But it just struck me as very strange.

So my sister said:

Sister: Well. Two can play that game!

And attached a video of herself with half of an enormous gourd on her head and doing the shimmy.

I am not kidding.

Which goes a long way to explain why I am the way I am. It's all in the genes, people.

Cheesy Goodness

In my post yesterday, I mentioned a delightful meal shared with Terese and Greg. Want to know what made that supper so enjoyable, aside from the company and sparkling conversation?

It was John's signature super yummy dish: a Swiss cheese fondue. Mmmmmmm....

One of our favorite restaurants around here is Gustav's, which specializes in German-style food, and their fondue is one of our favorite menu items. It's so flavorful and smooth; served with chunks of hearty bread and bits of sausage it is considered an appetizer but I make it my meal. One evening as we were sitting in Gustav's enjoying an order, I wondered out loud if this was something that we could make at home.

John and Greg pounced on the idea. They whipped out their phones and googled like crazy for fondue recipes; with amazement John saw that Gustav's had a website on which they published the recipe.

What a restaurant! What a country! Woo hoo!

It's incredibly easy to make, and when served (sans sausage) with veggies and fresh fruit, makes a meal that is satisfying for vegetarians as well as omnivores. Om nom nom nom nom..

Here's the recipe.

Rheinlander Cheese Fondue

Ingredients:
1 pound grated {processed} Swiss Cheese
2 cups very dry white wine, Chardonnay or Chablis
2 cloves mashed garlic
1/4 teaspoon white pepper
1/8 teaspoon cayenne pepper
pinch of nutmeg

Directions:
1. If you cannot find cheese in a one pound block, buy it in slices then dice with a French knife into small cubes, In a stainless steel saucepan, simmer white wine, garlic, nutmeg, white pepper and cayenne pepper for approximately 10 to 15 minutes to reduce wine and let alcohol cook out. Place grated cheese or cheese cubes in wine mixture. Stir with wooden spoon until cheese completely melts. do not boil, just let it melt. If it is too thick, add more wine; if too thin, add more cheese. The consistency of the fondue should coat the bread evenly when it is dipped into the mixture.

2. Place in fondue pot and keep hot using a candle or an alcohol burner under the pot.

3. Serve with toasted rye and French bread. cut bread into 1/2 inch sized cubes. Place on a baking sheet and toast in a hot 400 degree oven for about 10 to 15 minutes. The inside should be soft, the outside crusty. Put bread in a basket lined with a napkin. Serve with fondue.

4. Serve the same dry white wine that you use for the fondue as a refreshment for your guests.

Image found on Gustav's website, here.

Having Sjogren's Syndrome Means I Can't Do Everything

We had bags and cans and packages stacked everywhere. 

I spend a great deal of time here on Reasonably Well blabbing about how important it is to know one's limits. To accept the realities that are the result of living with a disease that saps energy among several other significant symptoms. To then adapt and learn to live differently: not worse, not better -- just in a new way.

Easy to say. Hard to do. After a decade plus of living with Sjogren's syndrome, I still struggle with my limitations, not only in terms of what I can do but what I'm unable to do. And if I can't be realistic or honest about my limitations, then it follows that accepting help in dealing with them is almost impossible.

It's become increasingly possible -- possible, but not easy -- to find myself saying 'no' to many things: to decline invitations for events that I know I am unable to participate in comfortably, or to give up hobbies and interests that I enjoyed in my pre-autoimmune life.

But one thing remains almost impossible for me to do: to say 'yes' to my friends that offer to help me.

It's so much easier to be the giver of assistance, rather than the recipient, isn't it? The giver gets to share. The recipient has to swallow their pride and admit their deficiencies in order to accept help. What a bitter pill to swallow. Ah, but last week I made a baby step towards a realistic assessment of my needs and more importantly, to be able to reach out and ask for help.

This is a big deal.

So I'm looking forward to hosting our annual Thanksgiving day extravaganza. I expect to serve around 30 people a sumptuous turkey dinner with all the trimmings. I can't wait to fill my house to the brim with family and friends and good food. I live for those wonderful times...

It is one of those things that will require far more energy than I have but it's also one of those situations for which I'm willing to pay the energy price. And last week I was discussing it all with my friend Naomi. I told her that there were a few things that I wanted to do in order to make housing and feeding lots of people a bit more efficient and easy: I wanted to clean out my pantry and make some kind of inventory of what food supplies I had and what I actually needed. In years past, I would just make an enormous shopping list, buy it all and just stuff it into my already bulging pantry shelves. But this year, as I looked in there every morning, I realized that there just was no more room. And I wondered what the heck was lurking in the far back recesses. I couldn't remember the last time that I gave my pantry a good cleaning.

As we were lingering over our drinks in a coffee shop, I told Naomi that my goal for the whole week was to slowly and methodically remove every last can and crumb, examine expiration dates, scrub the shelving, and start fresh before I could plan a holiday weekend's worth of meals for a houseful.

She said, "How long will that take you?"

Oh, I won't be able to do it all at once. It will probably take me three or four days if I just work on it a little at a time.

"That doesn't sound like much fun. Why don't I come over one day and we can get it all accomplished in just a few hours?"

I thought, Oh, never! NO ONE is going to see all the crud and outdated food that's in my kitchen.

She looked at me expectantly but didn't say another word. And then after all these years of saying 'no', I realized how refusing her help would be a dumb stupid thing to do.

So I said 'yes'.

Wow. I said yes. The sky didn't fill with storm clouds and lightning bolts, the earth below me didn't split in a catastrophic earthquake, and well......nothing happened.

I just said 'yes', and she smiled and said, "Great!"

So last Thursday, Naomi appeared bright and early. I had coffee brewed and my cleaning supplies at the ready. For three and one half hours, she cleaned and scrubbed. I checked outdates and cut shelf liner. We discussed organization and the merits of various types of canned goods and --- had a great time.

Guys. It was fun. Saying yes was a very good thing.

Now I have a sparkling clean pantry, which doesn't mean that the rest of my kitchen matches it, but every time I open those doors I smile.

Yeah...I've kind of fallen off the organic foods wagon. I still always buy organic bread and milk though. Do you like my mother-in-law's cracker tin from the 1950's? Tucked way in back is a quart of the last batch of maple syrup that John's dad made. He's gone now. I'll never use it but I like to think of him when I look at it...

So what have we learned here, Julia? Hm. I would say that sometimes swallowing your pride is actually kind of a pleasant experience. And here's proof: last night after we finished a delightful evening with Terese and Greg, and Terese cleared the dishes from the table, I asked her to load them up in the dishwasher.

GASP. Yes, I did. And do you know what she said? She said, "Oh, goodie!" Seriously. And then she proceeded to whip all those dishes in there and we had the dishwasher humming away within minutes. After which we watched a really enjoyable ridiculously corny old movie.

Baby steps. I learn acceptance/reality in teensy little steps.

And, just for the record, the oldest thing that we pulled off those dusty shelves was a can with an expiration date of 2002. Ha!

Special Delivery

Do y'all remember awhile back when we had a creativity challenge contest? And the talented mom/son duo Amy and Cole won by creating Super Hydrating Nixie?

And then Daughter #1 sculpted her in wool felt and she went first class Priority Mail to live with her family Amy and Cole?

Well. Hold on to your hats, people. This busy little water droplet is going places. Seriously. Amy says:

And...speaking of Nixie, she's the star of our Dallas Support Group. We met yesterday and one of our members will be attending the run at Disney. She asked if she could take along 3D Nixie so she can join in the race. She promised to take good care of her and I trust her to guard her with all her Sjoggie might.


Amazing!! Which race, you ask? Read this from the Sjogren's Syndrome Foundation website:

January 11-12, 2014 

Walt Disney World® Marathon & ½ Marathon

Team Sjögren’s is headed to the most magical race on earth!  

Limited spaces available- Contact Steve Taylor for Fundraising requirements and training information at staylor@sjogrens.org 

Wow! Goooo Team Dallas and Nixie! (Send pictures, guys).

But wait --- there's more! Super Hydrating Nixie now has her cute little mug immortalized in ceramic mug form. Cole and Amy have been experimenting with this new Nixie creation AND I HAVE ONE. Yesterday, a package arrived from Amy and Cole with one of their prototypes: 

I love her peeking up from the bottom of the cup:

Hopefully soon Nixie will be copyrighted and will be found in stores everywhere to share her superhero hydrating skills.

Amy.....Cole.....Thank you. The cup is fab. 

Playing Appointment Hooky

C'mon! Sing along with me! DOOT doot doot....

This post is dedicated to all those folks out there laboring under the mistaken assumption that my Bratty Inner Child Julia has been locked up in a closet somewhere in my psyche, snoozing away in a completely dormant state...

Well, now. That would be an incorrect assessment of the state of affairs over here.

No, sad to say, she's just as, um....difficult....as ever. I just have chosen not to give her more attention than she deserves. Isn't that the best way to deal with poorly behaved children? Ignore the unwanted behaviors and praise the good?

No? It's not? Ah. That must be the reason that my kids turned out the way they did. Hm.

Anyway, BICJ has been on a roll lately. And today -- just for today -- she won a major battle. It went something like this:

Me: Ok. I see that I have an appointment with Dr. Young Guy next week. Gee. Wonder what kind of treat I should bring this time..

BICJ: What? ANOTHER doctor visit?

Me: Well, duh. He asked me to come back in a couple months from my last visit, I made the appointment, and bingo! Here we are.

BICJ: When do we hafta go?

Me: In a couple of days.

BICJ: What for? Are they going to make me stand on the scale? Will they send me over to the lab so the vampires over there can suck yet more blood for tests? Do I have to tell them how much I haven't been exercising?

Me: Hey -- When is the last time that you let them put you on a scale over in the Rheumatology department? You already have them bullied enough that they know not to even ASK anymore!

BICJ: Yeah. True.

I hate getting weighed. So I just don't. Dr. Young Guy's medical assistants know by now to just breeze by the scale on the way to the exam room. And for the newbies, when they stop and politely ask me to step up on the scale, BICJ just wrinkles her nose and announces that I'm going to skip that today, thank you very much. After which they dazedly trail along behind me and my armful of treats as I cruise into the exam room.

BICJ: Well, I've got news for us, girl. We are SO not going to the doctor next week.

Me: What nonsense. I am the model patient. If Dr. Young Guy wants me to be seen, I will just get ourselves over there on the correct day and on time.

BICJ: Yeah? Just make me. [Sticks out tongue].

Me: Sigh. Let's talk about this, shall we? You like Dr. Young Guy. Getting your labs drawn is really no big deal since we have great veins. So what's the real issue? What's going on?

BICJ: Well, we already know that yes, we're pooped most of the time and our lupus rash is back and because we're tapering prednisone everything aches. I just don't want to sit in his office and wah wah wah some more because then I have to think about how crummy we are feeling.

Me: But Dr. YG is there to help!

BICJ: Oh, c'mon. What's he going to do? We've been on every DMARD imaginable and I've been either allergic to it or it doesn't work. We know that rituximab therapy is a thing of the past for us. And it's important to try to get off this dumb stupid prednisone. Which means there's no magic bullet out there. We're stuck being the way we are indefinitely. I'm not ready to hear that. [Sticks fingers in ears and begins singing the 'Star Spangled Banner' loudly].

Me: But......but.....

BICJ: I can't hear you! [Switches to doot-doot-doo-ing the Mario Brothers theme song].

Me: You know...... you actually may have a point. Kind of. Let me think about that. That doesn't sound like a very fun appointment.

BICJ: [Suspiciously takes a finger out of one ear].

Me: How about this? What if we rescheduled the appointment until after Thanksgiving, hm? We can't no-show for an office visit, so I'll call Nancy and we'll just rearrange things. We'll go......we just won't go next week. We'll go later.

BICJ: [Removes finger from other ear and ceases trying to vocalize video game music]. What's the catch?

Me: None. As long as you promise that we'll show at the new appointment time, you win. If something comes up, of course we'll get ourselves in to see Dr. Young Guy earlier. Promise me?

BICJ: Woo hoo! Sure! Hey -- instead of going to the doctor, let's go over to Rose's deli and have a big old slab of carrot cake to celebrate! And then...... and then..... maybe we should wing by Krispy Kreme.... and....

Me: Pffft. Nice try.

Kids these days. Give 'em an inch and they take a mile. Tsk.

What's Your Favorite Sun Block?

Image found here. 

Hi Julia,

  I have a question for you.  My daughter was recently (last week) diagnosed with SLE.  She has been a lifelong sun worshipper so the sudden sun sensitivity has hit her really hard.  She loves the hot weather and sunlight so much she moved to FL a few years ago!  She now needs a good daily moisturizer with zinc oxide or equivalent sun block.  Any suggestions?  Oh, and she is a first grade teacher so she spends at least 9-10 hours a day under florescent lights.  Another new daily danger with which to contend.  It just never stops with AutoImmune diseases does it?   Maybe your readers have offered suggestions in the past?  If not, perhaps you could ask now.  It is a year round hazard after all.

Thank you,
Katherine   

First off, Katherine, you're right: it just never stops. Life in the autoimmune world is never boring, is it? You're also right about the importance of protecting ourselves from UV light from both outdoor and indoor sources.

The Johns Hopkins Lupus Center makes these recommendations for sunscreen use in autoimmune disease:

50% of all people with lupus experience sensitivity to sunlight and other sources of UV radiation, including artificial lighting. For many people, sun exposure causes exaggerated sunburn-like reactions and skin rashes, yet sunlight can precipitate lupus flares involving other parts of the body. For this reason, sun protection is very important for people with lupus. Since both UV-A and UV-B rays are known to cause activation of lupus, patients should wear sunscreen containing Helioplex and an SPF of 70 or higher. Sunscreen should be applied everywhere, including areas of your skin covered by clothing, since most clothing items contain an SPF of only about 5. Be sure to reapply as directed on the bottle, since sweat and prolonged exposure can cause coverage to dissipate. [Bolding mine.]

Here's what WebMD has to say about skin protection for lupus patients:

"There's a tremendous amount of confusion about sunscreens," says Andrew G. Franks, Jr., MD, director, Skin Lupus and Autoimmune Connective Tissue Disease Center and clinical professor of dermatology and medicine (rheumatology) at New York University School of Medicine. "Patients with lupus need to avoid ultraviolet [light]. We want them to be sun-conscious and sun-educated."

"It's very important, whether you're photosensitive or not," he says. You may not get a rash after UV exposure, but there could be an increase in auto-antibody production, which can create disequilibrium in the status of your lupus.

Franks recommends using the highest SPF, but emphasizes that sunscreen is not a substitute for taking common-sense precautions like sun avoidance or wearing sun-protective clothing. He says the current numbers only delineate UVB protection, but there is a star system in development that will spell out UVA protection.

"The key is to find a nonirritating, extremely broad-spectrum sunscreen to wear everyday," says Noelle Sherber, MD, dermatologist in private practice in Baltimore. Her top recommendation is La Roche Posay's Anthelios SX Daily Moisturizing Cream SPF15: "The active ingredient, Mexoryl SX, is uniquely effective due to its spectrum of UV protection that fills a gap in other chemical sunscreens in the short UVA range. The formula is gentle and moisturizing."

The Sjogren's Syndrome Foundation Patient Education Sheet entitled 'The Sun and Sjogren's Syndrome' describes UV protection guidelines and can be found here.

Do you use daily sunscreen, sunblock, or wear UV-blocking clothing? What's your favorites? Share your recommendations in the comment section below.

Breathing Well in the Cold

You can buy your very own cute respiratory reminder sign here. 

The Cranky Native asked a really good question yesterday regarding dry nasal passages:

...thank you for the blog today. I'm heading to the kitchen to stick olive oil up my nose right now! Please can you address this now since this happens to me to during the winter. My lungs are effected by the cold. The air outside about kills me. My mouth all the way to my stomach dries out. Just pulling the air through a paper mask is a labor. I've been thinking of putting menthol oil on the mask to help? I can't just stay indoors, I have doctor appointments to go to. Any suggestions? 

Girl. Don't be sticking too much olive oil up your nose. Notice that the good doctor said "A LITTLE BIT" of olive oil. If you inhale a snortful  -- EVO or otherwise -- it too can cause a lipoid pneumonia.

But on to your other question regarding difficulty breathing cold winter outside air, which is excellent. You're right, winter is coming/here and it is a good idea to be prepared.

Many doctors recommend these simple things that may help:

• Breathe in through your nose, which warms and humidifies air before it reaches your lungs, and wrap a scarf around your nose and mouth. 
• If you have asthma and use an as-needed type of inhaler, use it about 30 minutes before going outdoors to open airway passages and reduce lung irritability.
• Wear a cold weather mask. Several types are available. I have no experience with these types of products, so I can't recommend particular models of which there are many types. Some are even heated. Check this one out, found here:

My goodness.

This one is much simpler and is very inexpensive, offered by Breathe Pennsylvania:

Here's a really fancy one from Hammacher Schlemmer:

What do you think, cold weather sjoggies? Do you have any other tips or tricks to share?

SSF: Saline Better Than Vaseline for Dry Nasal Passages

Brrr. It's cold outside. Must mean that winter is on it's way. I thought this tidbit from the Sjogren's Syndrome Foundation blog was timely and interesting:

 With winter weather exacerbating many Sjögren’s symptoms, including nasal dryness, the Sjögren’s Syndrome Foundation has been receiving a lot of questions about the use of Vaseline to relieve the pain associated with dryness of the nose and sinuses. 

Below is a Question & Answer on this topic and how inhaling Vaseline, when used to sooth nasal dryness, can affect the lungs. This was taken from a past SSF National Patient Conference talk "Lung Complications & Sjögren’s," by Richard Meehan, MD, FACP, FACR.

Q. I’ve been putting Vaseline inside my nose. I’ve read recently that the grease can get in your lungs and cause a special type of pneumonia. So, is this something that you shouldn’t put in your nose?

A. Well, our ENT physicians don’t like Vaseline. They recommend that people frequent the use of nasal spray, that puts the normal saline back in the nostril. Some of them like to use a little bit of olive oil, but generally it's thought that Vaseline is toxic to the lungs if you inhale it.

- Dr. Meehan

Dr. Meehan's ENT physicians don't like Vaseline because if accidentally inhaled it can cause a specific type of pneumonia called 'lipoid pneumonia'. You can read more about the nasty effects of this type of lung disease here.

Fig. 3B —Chronic exogenous lipoid pneumonia in 63-year-old woman due to chronic aspiration of Vaseline (Unilever) petroleum-based lubricant. CT image shows areas of fat attenuation within consolidation (arrows), finding diagnostic of lipoid pneumonia. Image found here. 

The NIH webpage for patients using oxygen therapy recommends the use of a water soluble lubricant such as K-Y jelly for dry nasal passages. Other water-based lubricants are available such as Ayr. 

Out With the Old....

It's true, Lulu. We've had a zillion great naps on that couch. 

Let us all take a moment to reflect on one of my family members that has left us.

[tick tock tick tock tick tock....]

So. Big fun yesterday when my old couch left the premises. Yesssssssss! Even though it has served us well for the last seventeen years, the time has come for it to move on.

I'm looking forward to taking delivery on a new couch and chair set, but Lulu doesn't share my enthusiasm. She would really rather that the old, smelly, and worn sofa stayed put right in front of our living room window. With her snuggled into one of the cushions and barking madly at anything that ventured onto our lawn.

She followed it out of the house and jumped into the trailer.

"No! No! Don't leave meeeeeeeeee....."

Don't worry, Lulu. I'm sure you'll love your new couch too.