Thursday, December 18, 2014

Full Disclosure

 There's a reason that I didn't take this picture from any further away. It's because I didn't want y'all to see the shrapnel that's left from getting the tree to look this way. 

I'm sorry, guys. I really am.

For what?

Well, over the past few days I've been getting emails from people saying basically. "I feel like such a slug! I haven't done any of the Christmas stuff that you've done! My tree isn't decorated, I haven't baked a thing, and I'm so tired that I don't think I'll get it done, either."

So I have to apologize because, yes, my tree and fireplace is decorated. And I do have my throw pillows thrown around. But what I didn't take pictures of OR post prominently in my previous nanner-nanner-type post is the piles of dust on every flat surface, the floors just begging to be threatened with a damp mop at the very least, and the piles of dishes in my sink. I'm sorry if I appeared to be boasting about my Super-Christmas powers this year, because truthfully they don't exist.

I should have given you guys the total picture. I don't want y'all to think that life is all candy canes and sugar plums over here, because that wouldn't be honest. The majority of my Sjogren's syndrome symptoms still are hale and hearty: the fatigue, the malaise, the dry eyes, the....well, you know. And there's always more, isn't there?

But there's no doubt that I am having a period of time in which I feel less ill, I really am. I'm really happy about that, but if I've given the impression that as some of you have asked, that I am "cured" or that I'm in "remission", as much as I'd like to hope that's the case, it is not. I'm trying to be truly thankful, because as we all know, these periods don't last indefinitely, and I'm trying also not to burn the Advent candle at both ends, so to speak, in order to save my energy for all the things that really matter during Christmas: Worship, spending time with friends and loved ones, and.....

......eating fudge.

Hey. I'm being totally truthful here.

There's lots more to be done before December 24th; but Lulu and I are just taking one task and one day at a time.

Lulu says that holidays are exhausting for a Schnauzer. 

Wednesday, December 17, 2014

Purely Ornamental

This year our party was held at a fabulous all-things-Christmas type store. 

Oh, man. I just can't stand myself. I know y'all have heard a million of these but I just have to share another Bev story.

(I'd share a Terese story except she's been behaving herself for a suspiciously long time. Which means one of two things: A - either she really IS staying out of trouble or B - she's not telling me about it.)

Of course you remember my friend Bev of the now infamous bear bomb incident and the threatening to do a strip tease on my front porch fame. Wait. Did I ever share the latter story?

No? It's a goodie. I'll tell you another time.

Like all of my friends, I just love this girl to death.

So TWO YEARS ago, our coffee klatch group -- we call ourselves the Mocha Girls -- exchanged Christmas ornaments. The party was held at my house, and Bev left one of her ornament gifts behind. I put the festively decorated gift bag on top of my piano and it's been there for .......... TWO YEARS.

I've tried to send it home with her multiple times over the past twenty four months but somehow it always has remained right on top of my piano.

I think it liked it there.

Ah, yes. I finally delivered the thing to her front door two Mocha Girls Christmas parties later. I had offered to pick Bev up on the way to the party. My incessant door bell ringing brought a horrified bathrob-ed bleary-eyed Bev to greet me through her screen door, mortified that she had slept through her alarm. While she threw on clothes and brushed her hair in a panic mode, I took the gift bag with her two year old ornament and set it front and center on her dining room table. As we headed out the door, we laughed about the length of time it had taken to finally get that ornament into her house.

The party was great. We all had a fine time shopping and laughing and enjoying lunch and exchanging this year's gifts. We headed back home and I dropped Bev off at her house, almost hoarse from the incessant yakking over the past several hours. She waved goodbye from her front porch.


So the next day, the phone rang and it was Bev. She was laughing so hard she could hardly speak.


Oh, hey Bev!

"You are so not going to believe this."

Honey, I've known you for almost twenty years. I'll believe anything.

"So that ornament that you've had sitting on your piano for ages, and finally got over to my house?"


I heard a long sigh on the end of the line.

"Well, I took it out of the gift bag and walked over to put it onto the Christmas tree last night. And......"

She started cackling.

Girl? You ok?

"Hehehe. Well, I tripped on the rug and dropped it. It shattered into a zillion teensy weensy pieces."

We both whooped with laughter.

I think that thing missed living on my piano.

What a classic Bev incident! I told her that if she would have simply taken the stupid thing home two years ago and hung it on her tree, she probably wouldn't remember anything about it. But now?

Now we'll never forget. Just don't tell our friend that originally put the ornament in the gift bag.

Tuesday, December 16, 2014

Fait Accompli

Well. Everyone around here is happy as can be that the decorations are up, the boxes are cleared, and that it's time to enjoy the beginning of the Christmas season. 

This is the most important decoration on our tree. The kids would be devastated if The Noodle didn't appear front and center.

This year's Christmas puzzle.

The amaryllis blossomed!

The camel is securely tied up to the stable. We always tie up the camel. You can't trust 'em.

We've got all gingerbread aspects covered. 

Sigh. What fun. 

Everyone's happy -- with the exception of one: 

Lulu isn't happy at all. She's convinced that one of the ornaments on our tree is hers. So she swipes it whenever I foolishly place it at Schnauzer level. The poor little reindeer has had his bow chomped off his belly and one antler is hanging on by just a thread. 

Lulu, girl. If you leave this poor little guy alone, and be a very very good Schnauzer, maybe Santa will bring you a reindeer doggie toy on Christmas morning. 

Monday, December 15, 2014

Hanging up the Hang Tag -- For Now

Yesterday, as we pulled into the church parking lot, John asked if I wanted him to drop me off in front of the steps so that I wouldn't have to walk as far. I opened my mouth to say, "Sure!" then closed it. I remembered that not only could I walk the length of the parking lot, but that I should. My surgeon and physical therapists have changed their advice from "Don't walk any more than you have to since it will damage the stenosed nerves in your back," to "Get out there and walk as often and as far as you can tolerate."

It's going to take awhile for me to get my head around this change in circumstances. I'm accustomed to wheeling Goldie into the handicapped parking spaces without thinking twice. When I enter a grocery store, I automatically look to see if a scooter shopping cart is charged up and available. I have been avoiding the mall and other large shopping centers for ages because it stinks to be about ten stores away from the exit when my the pain and numbness begin.

But now I'm told to look for reasons to walk fairly lengthy distances. So I have. And I've got to admit, I still have factors limiting my walking, but they have have nothing to do with my back or nerves.


For one, these legs of mine have seriously lazy muscles. I think they've enjoyed getting a pass from significant exercise over the past few months.

Secondly, I am seriously lazy. I know that overall I have enjoyed getting a pass from significant sweat-inducing exercise over the past few months.

And third, this old body and its muscles de-condition rapidly. I think my autoimmune disease and the energy limitations it brings plus recovering from a major surgery may have something to do with this, but I'll bet age is playing its part as well. But for whatever reason, getting my keister out of the chair and off the couch to return to regular exercise is proving to be a challenge and keeping it moving is even harder.

So what's a lazy sjoggie to do? Guess I will be parking further from my destinations, maybe, and leaving the store scooters parked and plugged in. I wonder if the place to start is making small changes in a consistent manner? And of course snapping a leash on Lulu and resuming our little daily walks is something that would benefit both her and me. It's time to change my mindset altogether.

At least, for awhile. There will be times that fatigue and pain will limit my activities. I know better than to think that I'll never be using my blue handicapped hang tag ever again. Flares will force me to dig that puppy out and slap it on my rear view mirror at some point in time. But for now, I'm glad to tuck it into the dash compartment.

Sunday, December 14, 2014

Chillin' Out Christmas

Guys. Did y'all realize that Christmas is less than TWO WEEKS AWAY?

I should be frantic because there's so much to do! Well, at least I should be panicking....although I'm not. Really. And, for some reason that's OK with me.

I'm not certain where I acquired this newfound serenity. In years past, if by this time my kitchen windowsill wasn't chock full of gingerbread house themed knick knacks, I'd be running in circles trying to get everything done.

Right now they're living on my kitchen island.

But lately, I find myself leisurely adding an ornament to the tree,

....then casually plumping up a Christmas pillow just out of the storage box (which is still front and center in my living room),

.....and idly tweaking all those garlands that get all crunched and bizarrely shaped while sitting in my attic.

...and then plopping down in the recliner to watch a stupid holiday movie amidst the boxes and packing material.

I think my unusually calm attitude about the holidays this year has a great deal to do with the enormously less painful days that I've been experiencing. I think pain really changes one's perspective on everything, don't you agree? Less pain means walking around for almost as long as I'd like which makes shopping quite enjoyable. Less pain means that I don't become angry and frustrated when deciding if the snowmen family should go on the sofa table? Or under the tree? Or on the entertainment center?

 The sofa table, I think. 

You get the idea. I'm liking this.

I wonder how long it will last? Do you think by next year I'll have forgotten what an absence of Christmas anxiety feels like? I hope not.

Saturday, December 13, 2014

Dumb Stupid Grinch Windstorm

Guys. Until Thursday night, our Christmas light show looked like this:

Let It Go - 2014 from John Oleinik on Vimeo.

How cool is that? Or WAS, I should more accurately say.....

Wah. Wah wah wah.

The monster wind storm that arrived on Thursday seriously damaged some elements of our show. Most is up and running but our beautiful new 16 foot tree which was capable of creating so many awesome effects is down for the count.


Thankfully, the show still goes on and it's beautiful, but dang. John and Son will be evaluating the prognosis of the poor tree. The patient is currently taken apart and is sitting in large pieces in our garage. He's looking pretty sad.

I'll keep y'all updated. Here's another video of this year's show:

Carol of the Bells 2014 from John Oleinik on Vimeo.

To see more of this year's videos and of past year's shows, click on the "Vimeo" logo on the bottom right corner of the video screen.

Thursday, December 11, 2014

Dinner By Candlelight

My goodness. We are having a monster wind storm and have no electricity. I'm not certain when it will return so thought I would put up a post via my phone. See y'all Saturday! 

The Moisture Seekers: How to Talk With Your Family about Sjogren's

Geez, Julia. There's no need to shout....

Earlier this year I was asked by Dr. Sarah Schafer to collaborate in writing an article for the Sjogren's Syndrome Foundation publication "The Moisture Seekers". It appears in the November/December 2014 and is available for SSF members to view online. Members also receive printed copies in the mail. Collaborating with Dr. Schafer, physician and Sjogren's syndrome patient, as well as Dr. Teri Rumph, author of The Sjogren's Syndrome Survival Guide was such a great experience! I'm glad that I was able to contribute.

I thought Sarah was spot-on in her discussion about communication with loved ones about chronic illness and her action points are applicable to any long term illness. I've posted a segment here, but SSF members can download a PDF copy of their very own here. Here's an excerpt:

How to Talk With Your Family about Sjögren’s
by Sarah Schafer, MD and Sjögren’s Patient
Special acknowledgment to Teri Rumpf, PhD and Julia Oleinik, RN for their contributions to this article.

There is a growing body of evidence that rich social support networks are important to overall health, immune function and healing. They improve quality of life and facilitate coping with chronic illness. Conversely, negative social interac- tions create a stress response that have the opposite effect. Support from family members and close friends can be one of the most important resources for you to draw on when dealing with Sjögren’s. Skillful communication about your illness is key to nourishing the relationships that matter the most to you. This article only attempts to skim the surface of this complex topic.
continued page 8  

This is a difficult topic for many of us, especially those that struggle with family and friends that simply don't -- or won't -- understand the challenges that accompany this disease. It's hard to begin this conversation without sounding as though we are complaining or accusing. Despite the awkwardness that is inevitable when beginning one of these discussions, it's vital to begin this type of dialogue both for you and for your loved ones.

I've written before about difficulties with relationships once chronic illness enters the picture, read this. The post was written way back in 2010 but continues to be actively commented upon, with several excellent observations made. Like this one by connielea:
Well I have lost friends who don't know how to laugh with you when you tell them how you yarked in the shower that morning because of your illness. Some people are just squemish and can't laugh at ick factor that comes with a chronic illness. And they don't get the "chronic" part. The up's and down's are more than they signed up for in the friend dept. I always love the "you don't look sick" part. A real friend knows how long it took you to "not look sick" on the days when you venture out in public. My real friends can look at me an know if I am having a good day or a bad day and stick with me for both. Friends, we need them and we need to be them.
And this:
Abigail.R said...
I've been browsing through several articles on this topic and this was a good one, thanks :)
The thing I find most frustrating is the fact my friends never seem to understand that I don't want to stay at home all the time either. It's hard not to get upset when they keep pestering me to go out and I hate to use my condition as an excuse. Fatigue is the hardest symptom because, unless you have suffered from it, I think people find it difficult to imagine tiredness to be so debilitating.
Here is a comment made by a friend, which provides another interesting perspective:
Anonymous said...
I'm a friend who did and does understand. I watched a co-worker go through working in misery, eventually becoming unemployed because of illness, floundering through the diagnosis nightmare, etc. I helped her get to MDs and specialists for testing, listened, let her needs drive the amount of activity we did, etc. When she got the Sjogren's Dx, I made a point of doing some research and learning what I could (I found this blog!).
I understand the depression and brain fog and frustration and depleted energy. But I did eventually burn out on the fact that all of our time together consisted of her ranting on and on and on about her health and her troubled life.  
Never asked how I was today. Never went out of her way to give ME a call when I was having some ups and downs. Never listened when I said that I really couldn't take her ranting about everything today, because I had already had a bad day myself. 
Finally decided I didn't need a one-way friendship, even if she had a valid reason to be in need of support. It hurt me to stop calling or seeing her, but I had no choice for my own sanity. 
Chronic Illness is a big challenge. It doesn't excuse wearing out your friend.
Here's more from The Moisture Seekers article which goes on to offer some concrete tools in effective communication:

Examples of useful responses and communication tools
  • If you are unsure of a person’s awareness or interest, you can ask: “I’m not sure how much you know about Sjögren’s- do you want to know more about what’s really going on with me?”
  • When someone asks if they can help, try to be ready with a specific request such as stopping by with dinner, running errands, childcare, etc. If you are caught off guard, a good response might be: “Can I get back to you? I could really use help but I am feel- ing too overwhelmed to think about it right now.”
  • State your limitations and needs, clearly and without apology. If you are too tired to cook, shop or clean, state that and request specific help from household members. For example: “I’m not well enough to do housework right now. Could you please vacuum and clean the bathrooms once a week?” as opposed to the more vague, “I need more help with the cleaning.”
  • Many people go into advice giving mode, offering instant remedies such as the latest diet, various medical regimens, healers etc. This may be moti- vated by a true desire to help, or it can be a way to distance themselves from your experience. Some possible responses: “Thanks for your concern, I am working closely with my doctor on this,” or “I ap- preciate your concern. I need to do this in my own way and in my own time. It would be great if you could support my choices.”
  • Dealing with insensitive and judgmental com- ments, especially if repeated, is difficult. One strategy is to provide the speaker with an opportunity to consider the hurtfulness of their comments, by asking: “Let me understand. Are you saying (repeat hurtful comment)?” The person may back pedal or give their comment more thought. This does not always work. 
 Here are examples of responses to real life comments:
  • If you just stopped taking all those medications, you would be fine.”
  • Response: “What I’m hearing you say is you think Sjögren’s is not serious enough to require medication.”
  • “If you would exercise/lose weight/eat paleo etc. you would be fine.”
  • Response: “Do you think if I (fill in the blank) my Sjögren’s will go away?”
  • To a more subtle comment insinuating you are not trying hard enough: “I’m hearing you say that if I tried harder that I could do _______ (fill in activity) and still manage my Sjögren’s symptoms.”
  • If responses like this do not work, set boundaries: “It hurts to hear you say this. I am doing my best. Please keep these comments to yourself.” 
Have you had experiences similar to these? Have you developed useful phrases when dealing with difficult people?

Let's keep the conversation going.

Wednesday, December 10, 2014

Home For the Holidays?

The Sjogren's Syndrome Foundation has put up a timely link on their Conquering Sjogren's blog that addresses many problems Sjogren's patients encounter during the holiday season. Excellent timing, SSF, as usual. Check it out:

SSF Holidays Survival Patient Education Sheet Collection

Posted on Fri, Dec 13, 2013

We hope you find this collection of SSF Patient Education Sheets helpful.

Especially during the busy holiday season, it’s important to make sure you listen to your body and do not neglect your health.

 And when finishing your on-line shopping this Holiday season, remember to "Shop for Sjögren's!" 

Shopping on-line is now an easy way to contribute to Sjögren's!
The Sjögren's Syndrome Foundation has partnered with on-line retailers who will donate a portion of the value of your purchase to the SSF. This year, purchase all of your holiday gifts, while also giving back to Sjögren's.
Some of our partners include:

Tuesday, December 9, 2014

Dear Santa...

......I've been a very very good girl. I want one of THESE for Christmas: