Thursday, May 26, 2016

A Different Focus

It's abundantly obvious that I have been neglecting my blog since Christmas.

Sorry about that.

I've been spending some time in thought trying to understand what the heck is going on. Finally, I believe I have discovered the cause of my reluctance to just write a few words and hit the publish button, for cryin' out loud.

Yes. I'm pretending that I don't have a chronic illness.

See? It's hard for me to even type the words Sjogren's syndrome. Denial is a powerful thing.

Even though I've finally realized WHAT I'm doing -- or not -- I have no desire whatsoever to spend the emotional energy discovering WHY. BICJ has put her imaginary foot down in refusal to poke or prod my psyche. She has thrown herself protectively in front of the emotional center of my brain and has declared, "ENOUGH."

For once, I agree completely with my bratty alter ego. It's time for an emotional time out from the feelings of loss or frustration or angst that have prevailed since the beginning of the year, including my ongoing battle with autoimmune disease. So I find myself focusing on pleasant things, and fun projects which require extensive online research and purchasing. Shopping! Woo hoo!

Blog about Sjogren's syndrome? What blog? What's a blog?

So I am going to indulge myself this summer to just write about people, places, and events that make my heart smile. The biggest grin inducing event lately has been my ongoing and tantalizingly close to finishing obsession with grey paint. And it has been just a hoot.

Well, it's been a hoot for me. I'm so lucky that I have such an amazing team of forcibly threatened slave workers volunteer painters. Specifically John and Terese. What a great job they did.

I just love the color that I chose. It's called "Aluminum Foil", which I think describes it perfectly.  It's so much fun to work with one of those strange chameleon type colors -- grey, blue, white.....the ambient light changes this color into one of a million different hues. Because who wants just ONE boring color on your walls?

Love this charcoal shag beauty. It's so great to have a cushy spot to just splat myself flat when I need to.

Y'all know the feeling.

See how the color of these flowers just pop against that soft grey?

Next up: Hanging the curtains.

One of the most fun things about this project is that each and every element of it was a screaming bargain. Paint? The best Sherwin Williams has at 40% off, including brushes, tray liners, painters tape and everything else that I could think of. Brushed nickel replacement cabinet hardware? A fraction of Lowe's prices. Curtains? An absolute steal at $24/pair of panels. Rug? Online bargain find at 70% off and free shipping. The fact that it was the second one that I bought because the first one I bought was bright blue instead of grey as advertised and I had to wrap up and send the first one back? Only meant more shopping. Bonus.

Ahhh. What fun. I wonder what's next............

Wednesday, May 18, 2016

Wildlife in More Ways Than One

Awesome bear butt photo found on the North American Bear Center website, here. 

So the flight path between Portland and Minneapolis continues to be well travelled by yours truly. Actually I'm getting rather used to it since John, the sweetie, has sprung for business class tickets which make an enormous difference in leg room and location near the front of the plane. Highly conducive to in-flight napping which helps enormously in the need to hit the ground running in order to help my siblings care for the needs of my recently widowed and even more recently stroke-inflicted mother. Mom's needs are considerable and required placing her in a nursing home for rehabilitation after her hospital stay.

About a month ago, after medicare coverage expired and private pay requirements kicked in, and in deference to Mom's continued requests to return to her home, we were able to happily inform her that, "Mom! We're bustin' you outta here!"

She seemed really happy to hear that. With her memory issues, she doesn't remember this from day to day, but that means she gets the good news every day. Smile.

So my brother and brothers in law have remodeled her bathroom to include a wheelchair shower, elevated toilet, and grab bars everywhere. They've also put in a wheelchair ramp from the garage to her door. The biggest hurdle to bringing her home though was finding skilled caregivers to be with her 24/7 since at this point Mom isn't safe when left alone for any period of time. She's wheelchair bound and unable to do any of her own personal care which means these caregivers had better know their stuff. But Mom continues to be a real sweetheart in personality and temperament, so we're confident that she will be a pleasant person to take care of.

I was able to hire one of the caregivers last visit home, and yesterday my sisters delivered the great news that another had been found. Which means that we're on the home stretch in Mom's making the great escape from the nursing home. Not that this nursing home is particularly bad -- but by it's nature, it's ......well..... a nursing home. And for some residents, it's absolutely appropriate for them to be there. The building is new, clean, and furnished attractively. The residents each have a private room and bath, and are provided meals in small dining areas. It has a large activities staff who do their best to provide ways to keep residents engaged, active, and entertained.

But the bottom line is that it is still a nursing home. And Mom, after several months, just hasn't made the adjustment. She's becoming severely depressed and withdrawn. So we decided that as long as her care was now private pay its time to use the same amount of money to attempt to make her happy at home. I think that if I lived where Mom's home is, I would feel the same way.

Her little ranch house was built as Mom and Dad's retirement place just up the hill and in the woods located at the corner of their farm. From her dining room table, Mom has spent countless hours watching the seasons, the farm animals, and the deer and animals playing. [Insert Home on the Range melody here.]

Oh, yeah. It's a beautiful serene place. There's is not any nursing home on this planet that could compete with that.

Making a move like this happen for someone with complex medical needs could be a tricky process. Especially when there is a possibility that there will be days that Mom may not even recognize this house as her own. But it's a risk that we're willing to take.

Getting Mom home will be the first step toward helping Mom return to the wild woman that she used to be. And she really was one. wild. woman. Up until a few months before her stroke, she was harvesting an abundance of produce from her garden and canning, freezing, or pickling every bit. She was the primary caretaker of a local retired priest, a member of a crazy busy church group, and loved being part of a team on a bowling league. There's actually a zillion other things that this 82 year old lady would do to occupy her very busy day, until in one unfortunate minute when a stroke changed everything. Like I said earlier. She was a wild woman even at an advanced age.

Our goal is to get our favorite wild woman back home viewing the local wildlife as soon as possible. We're shooting for Memorial Day weekend but it may take as long as mid-June. It's all good.

And speaking of wildlife? We found out recently that TWO BLACK BEARS have taken up residence on the farm.

Yes. Bears. Plural.

So it turns out that a gentleman that works for Dad and Mom was walking into one of the machine sheds on the farm. He stopped to look up at the ceiling when he heard a strange sound and found himself looking at a small furry bear cub peeking over the edge of a very old horse carriage suspended from the rafters. And then spotted the mother bear walking along one of the rafters toward her baby.

Yes. Bears living in a horse carriage. Hanging from the rafters of a very old building. I'm telling the truth, honest.

We don't know if Dad knew about the bear nursery on his property, but I'd kind of like to think that he did. It would be just like him to get a kick out of bears hanging around........and I wouldn't be surprised if he was leaving jars of peanut butter around for them.

But that's pure conjecture.

Once we get Mom home she may have more wildlife to see outside her window than her expected squirrels and birds. I was thinking we should name the mother bear Bernie. Or Bernice. You can read these very reassuring statistics about black bears like Bernie here. We're told that she will probably move on once her cub is older. Bummer.

Wednesday, May 4, 2016

I'm Flying

So I'm back in Wisconsin again. You may recall that my mom had a serious stroke a few months ago and me and my siblings are kept hopping to coordinate her care and finances. So I'm getting really familiar with our airport and the Minneapolis airport.

I feel like Wendy from Peter Pan. "I'm FLYING!"

So far I'm appreciating the fact that I can get on a plane and like Wendy, just go where I need to go. And I have to confess that when I think about the enormous changes that have occurred in my childhood home with the loss of Dad and Mom in a nursing feels as surreal as Never Never Land.

I anticipate many flights ahead. Thank God for airplanes.

We'll talk soon. 

Friday, April 29, 2016

I'll not take chewing for granted ever again.

Such a momentous occasion yesterday!

**sniff....dabbing emotional tears**

Announcing the arrival of the newest Julia body part: Tooth!

It's the one with the titanium screw drilled into my jaw. Ain't it a beauty? 

And I have to say, it's about time. I've been living with a fragile temporary ever since the implant was placed back in November after been sternly advised that I was not to use it to actually bite into anything. So in between trips to have the stupid thing repaired and re-attached (because it was right next to my front tooth for pete's sake) I gnawed on things on the left side of my mouth. 

An attractive eating method. Not. 

The night before the much anticipated arrival of my permanent tooth replacement, as I was having a bedtime snack -- a mushy bowl of cereal -- I felt several pieces of something hard and sharp in my mouth. I spit the whole mouthful out...ewww...and found that the temp tooth had just crumbled into several pieces. 

I think it realized that it's life was over and just gave up the ghost. 

So I went to bed with a gaping hole in my smile and presented myself the next morning to my dentist. Who was amused when I told him that the temp that he had made for me just barely made it to the finish line in our little dental journey which began last November with the placement of the first part of the implant. 

After I had the permanent one installed, the dentist, his staff and I had a lengthy discussion about how I should debut my new choppers. He suggested chomping into a big steak. The dental assistant suggested crunchy caramel corn, which I found myself agreeing with until I thought of something that trumped them all. So I said good-bye and motored over to a nearby grocery store and grabbed one of these:

When I got home and after washing it, I placed that apple squarely in front of my teeth and took a satisfying sweet juicy crunchy bite. 


As I chewed on the RIGHT side of my mouth, I looked at the the picture of my dental x-rays that I had snapped on my phone camera, and was reminded of the toll that Sjogren's syndrome had taken. I realized that almost every tooth in my mouth reflected the effects of abnormal saliva: almost all had either a filling or a crown or was missing altogether and was replaced with an implant. 

And this was a very frustrating thing since I brush with a Sonicare toothbrush, floss regularly, and have my teeth cleaned three times a year. But Sjogren's dry mouth and the resulting lack of the protective agents in normal saliva has really taken an expensive and painful toll on my teeth; which reminded me of a post that I wrote several years ago but still contains some useful information about the battle between autoimmune disease and spit. Yes, the opening paragraphs are silly, but just keep reading and actual information eventually surfaces: 

The dimly lit auditorium is crowded, boisterously loud, and smoke-filled. The raucous crowd focuses on the boxing ring brightly lit in the center of the room. An official stands in the spotlight and grabs the overhead microphone.
"Ladies and Gentlemen! In this corner, the heavyweight champion - Rock 'em Sock 'em Sjogren's Syndrome!"
The crowd cheers wildly.  
"In this corner, the lightweight contender - Spittin' Sammy salivary gland!"
The platinum blonde next to you adjusts her mink wrap as the crowd jeers. She stops chewing her wad of gum long enough to lean over and comment, "Awww. Poor little guy don't have a chance.." 
Unfortunately, Blondie is right. Anyone who deals with the heavyweight champ Sjogren's Syndrome knows that our saliva glands don't last long in the ring before a KO punch puts them down for the count. Continue reading here. 

Tuesday, April 26, 2016

It's Time For A Change

It all started when a corner of the wallpaper border in my kitchen began to peel away from the wall.

I wasn't all that surprised since it had faithfully hung there for at least a dozen years. And, to be honest, it looked every day of those dozen years. I stood back and looked around my kitchen, dinette, and family room with a critical eye and decided that the overall color scheme looked a dozen or more years old too. Back then, the tuscan colors -- deep rich hues of gold and red and green -- were  cool, but now..........were faded and chipped by years of chairs and couches and dogs and kid abuse, and were starting to look dated and old.

Lulu says she's OK with a decor update as long as we don't move her food dish. 

I decided it was time for a change. But I wanted to take my time deciding what my new color scheme would be since in all probability it would too be around for another dozen years. Where to get inspiration, I wondered......

Enter DIY Network and HGTV. And a whole new routine entered my life: I was fixated in front of my television, coffee cup in hand, as I examined all of the interior decor themes of the zillion homes that were featured on the shows. Gradually I became familiar with all of the hosts of the shows and could predict what they would say as they looked at homes that represented the "before" in the makeover scenarios.

I have to say I was a bit miffed when one of the designers walked into a kitchen that was a dead ringer for mine, wrinkled her nose in disgust and declared that the whole kitchen simply had to be gutted.

Say WHAT? Took the entire duration of the episode of the show to unruffle my feathers.

For awhile, I totally bought into the concept of each show that without fail goes something like this:
1. One must realize that one's current home is ugly. 
2. To fix the ugly, one needs to haul in a dumpster and toss in all of your appliances, furniture, cabinets, toilets, flooring, and rip out at least one wall. Preferably two. 
3. You will be required to lose the word "room" from your vocabulary. It will be replaced with "space". For example: "Once we rip out these walls, toss all the appliances, furniture, cabinets, toilets, and flooring, this will be a great space." It is acceptable to substitute the words "open concept". 
4. Immediately after dumping all of the items in your home interior into a dumpster, one must take a trip to someone else's dumpster and "reclaim" or "recycle" or "up cycle" or "repurpose" at least one item. Which must be incorporated into the new design and placed in a highly visible spot. So that one can point to the item and modestly comment about your commitment to recycling to preserve the ecosystem. Earn bonus points if the item is rusty. 
5. Hosts will find a major structural issue with one's home which inevitably results in someone shouting "But that puts us way over our budget!" with anguished facial expressions. 
6. By the end of the show, one's home is magically transformed into a palace inevitably decorated in a modern style which means hardwood flooring, neutral wall colors, a kitchen gleaming with stainless steel polished to a blinding shine, and decorated with an enormous stark wall clock, barn doors, and most importantly: absolutely nothing which reflects one's personal life with the exception of three family photos placed tastefully on a sleek stone fireplace mantel. That overstuffed, comfortably worn sofa with the hand knitted throw gifted from Aunt Martha? Gone. Replaced with something claiming to be a couch but really is a lightly upholstered slab perched on spindly stainless steel legs. And the his and hers Lazy-Boy recliners positioned directly in front of a very large television? Check that dumpster. One will find them there nestled amongst the pile of throw pillows and Aunt Martha's handiwork. 
So I thought seriously about adopting this process and design look into our house. For about three minutes. Then I came to my senses when I realized that although I wanted to change the color scheme in our kitchen and family rooms (I refuse to use the word "space"), I didn't want to adopt a decorating style that doesn't reflect John and I. We like comfy leather furniture; and our recliners will only leave after they've been completely worn out. After which they would be repaired with two other recliners. I don't want to tear down any walls in our house because we planned where all those walls would go when we built it. We may have updated some of our kitchen appliances with stainless steel versions but my uncool hanging pot rack will stay right where it is complete with my grandmother's huge coffee pot and her glass cookie jar.

It took forever to choose new colors for our walls but we finally decided on a light grey with the appropriate name of Aluminum Foil.

 Love those paint samples. 

I'm planning on using yellow accents in the same shade of my foyer paint. Just like the colors in this pillow. Which is getting a bit deflated but will remain front and center with it's mate on our leather sofa.

John looked a bit panicked with I declared my intentions to embark on this big project; but after I told him that I wanted us to take a leisurely approach with absolutely no deadlines, he was immediately on board. And of course, we figured we'd rope Greg and Terese into helping. Turns out they both think a Friday evening spent removing wallpaper is the cat's meow.

I am SO done watching renovation television programs. Except for Property Brothers.....because um....... during the show I won't be focused on home design or decor.

Just kidding, hunky hubba hubba husband. (John strongly dislikes the Property Brothers.)

I'll keep y'all posted on our progress. Hey -- more opportunities for exercise!

Saturday, April 23, 2016

To Wash or Not to Wash: Cleveland Clinic

I thought this information from the Cleveland Clinic found here was interesting:

Should I Rinse That First? 8 Food-Prep Do’s and Don’ts

Safety tips for preparing raw meats and other foods

Should I Rinse That First? 8 Food-prep Do's and Don’ts
Washing food before you eat it may sound like a good idea, but that’s not always true. I like to give my patients these simple guidelines to follow for food safety.

1. Don’t rinse meat before cooking.

Many people mistakenly believe you should wash or rinse raw poultry, beef, pork, lamb or veal before cooking. But it’s not necessary. Any bacteria will be killed during the cooking process. In fact, as a registered dietitian, I tell my patients that rinsing meat before cooking can actually do more harm than good. When you rinse raw meat, bacteria can be splashed on other items in your kitchen and spread to other foods, utensils and surfaces. This is what we call cross-contamination.

2. Don’t rinse eggs.

The same is true for eggs. Eggs are washed during the commercial egg process, and federal regulations outline what procedures and cleansers can be used. Any other handling, such as washing or rinsing, just increases the risk for cross-contamination, especially if the shell gets cracked.

3. Do wash produce.

Produce is a different story. Before eating or preparing fresh fruits and vegetables, wash them under cold running water to remove any lingering dirt and reduce bacteria. If the item has a firm surface, like you’d see on apples or potatoes, it’s OK to scrub the surface with a brush. But don’t wash fruits or vegetables with detergent or soap. Those products aren’t safe to use on foods because you might end up ingesting them.
When preparing fruits and vegetables, cut away any damaged or bruised areas because those are the areas in which bacteria can thrive. Immediately refrigerate any fresh-cut items, like salad or fruit, for quality and safety purposes.

4. Don’t soak meat in salt water in an effort to remove bacteria.

This is a personal preference and has nothing to do with nutrition or food safety. If you do soak your meat in salt water, take measures to avoid cross-contamination when soaking and make sure that soaking is done while the meat is still in the refrigerator.
By the way, soaking pork products does little to remove salt and is not recommended. Instead, look for low-sodium options when purchasing meat if you’re trying to keep your salt intake down.

5. Do wash your hands to prevent cross-contamination after handling raw meat.

Hand washing after handling raw meat or poultry or its packaging is an absolute necessity because anything you touch afterward could become contaminated. In other words, you could get sick by picking up a piece of fruit and eating it after handling raw meat or poultry.
Wash your hands with soap and warm water for 20 seconds before and after handling food, and also after using the bathroom, changing diapers, tending to a sick person, blowing your nose, sneezing,  coughing or handling pets.

6. Do wash counter tops and sinks with hot, soapy water to prevent cross-contamination from raw meat or poultry juices.

For extra protection, you can sanitize with a mixture of bleach and water (one tablespoon of unscented, liquid chlorine bleach per gallon of water).

7. Do throw away meat packaging.

Packaging materials from raw meat or poultry, such as foam meat trays or plastic wraps, can also cause cross-contamination. So you should never reuse those for other food items. These and other disposable packaging materials, like egg cartons, should be discarded.

8. Don’t re-use any cooking utensils that have been used on raw meats.

For example, if you use a spatula to put a raw hamburger patty on the grill, wash the spatula with hot water before re-using it while cooking. Get a new serving plate when cooked food is ready to be dished up if the raw meat was on the serving platter. Also, keep cutting boards and produce far from any raw meat preparation area.
One last thing. Let’s say you’re not sure if food might have been contaminated. When in doubt, throw it out.
8 simple rules for prepping meat and other foods. #foodsafety #chicken

Saturday, April 16, 2016

Putting One Foot In Front Of The Other. Slowly.

Yes. That is indeed my foot. 

Johanna recently left this comment on one of my posts about a new commitment to exercise:
I just found your blog and OMG, thank you! Real talk from real people that isn't all doom and gloom. I struggle with exercise as well, and that quote really hit me. I am really struggling with fatigue and flu-type pain that hits every work day about mid-afternoon. But I have to start working movement more into my day. Thank you for your post of accountability and for sharing your journey.
Oh, right. I DID promise to be accountable to y'all and report my exercise progress. Thanks for the reminder, Johanna. So as promised, here is an update on my commitment to increase my exercise. And I have to say overall, I have. My motivation source is partly from within, and partly because I made a very public statement about that. The result is that in spite of several days during which I felt significant fatigue, I managed to haul my butt up off the couch and do something. Anything.

This made me feel that I had made some progress, but my attitude changed when I had to share the total number of minutes that I had exercised with the rest of a wellness class that I am taking. It didn't take long before my 120 minute week total went from spectacular to pathetic in my opinion after several members reported ten mile hikes and daily sixty minute running sessions on their treadmills.

Whoa. Deflated my puffed with pride ego as fast as a thumbtack can pop a balloon. I had to do some serious positive self-talk sessions during which I reminded myself yet again of the realities of my energy management; which simply can't be compared to others' abilities.

So after class last week, I mustered up some courage and struck up a conversation with our instructor. I shared my disease and resulting physical limitations with her; as well as the frustration and envy that I felt after seeing other class members accomplishments.

Her response was fantastic. "I am sorry that I was so insensitive. I will continue to encourage exercise, but won't ask participants to publicly share their actual numbers with this and all of my upcoming classes. I think that I may need to learn more about the challenges that my class members are dealing with so that I can address issues that are outside what we consider the norm, as well as emphasizing the importance of realistic progress."

We went on to have a very enjoyable thirty minute conversation, and as we said goodbye I felt as though my concerns had been authentically HEARD. What a rare thing. And a very good thing. Makes a girl want to go take a walk.

Sunday, April 10, 2016

Do Tell

Photo mine. 

To those lucky ducks that were able to attend the Sjogren's Syndrome Foundation National Patient Conference in Seattle this year: I would love to hear from you! I was unable to go for a whole lot of wah wah wah reasons, but am anxious to hear all about it. Drop me an email at or leave a comment below.

Gee. I wonder if Super Hydrating Nixie was able to fly over?

Friday, April 8, 2016

I think next time I will put down a beach towel first.

Yesterday was all kinds of awesome and included a drive with friends, sunshine, and an extraordinarily great lunch. I enjoyed every minute, but fully expected that today would require some serious renewal. So today, I napped, slept, dozed, and.....well did my usual recharging energy routine but it just wasn't working. I guessed that all of today's sunshine and warm temps were negating much of my strategy. 

Usually in this situation, I close up all the windows in the house and flip on the air conditioning, but I just couldn't make myself do it. What a stunningly beautiful clear blue sky and gentle breeze today! 

So I ventured outdoors, found a stretch of shaded lawn and belly flopped myself on to the grass, which is where I am writing this post. Ahhhhhhhhh. I can stretch out face first into the cool luxurious (and hopefully doggy doo free) grass, and let good old Mother Nature do her renewing thing. Cools me right to the core. 

Brings on a peaceful serene frame of mind.........until a little slug decided to crawl up the blade of grass directly in front of my nose. I think it's time to move this party onto my hammock chair. 

But I do feel much refreshed. 

Wednesday, April 6, 2016

Thoughts and Ramblings on Life, Love, and Health: How Sjogren's Has Affected Me

Christine, authoress of Thoughts and Ramblings on Life, Love and Health has written a very good post kicking off April's Sjogren's syndrome awareness month:

Today is April 1st, the first day of Sjögren's Syndrome Awareness Month. Despite the fact that Sjögren's is one of the most common autoimmune disorders out there, most people have not heard of it and many doctors do not know how to appropriately treat the illness or its complications.

The Sjögren's Syndrome Foundation put out a blog post today which included an updated human diagram of the different systems that Sjögren's affects. Oftentimes, Sjögren's is looked at as solely an illness that causes dry mouth and dry eyes. To start with, the dryness that accompanies Sjögren's is no small matter. Dry eyes can cause serious ocular complications, including vision loss and dry mouth can cause difficulties with swallowing and rampant tooth decay. In addition to dry eyes and dry mouth, Sjögren's can adversely affect just about every system in the body, as illustrated in the SSF's diagram above.

I have been doing this blog for a while now, so I don't remember if I posted about my specific Sjögren's symptoms, but I seem to think that I never have done so. This blog entry is going to be about that...the Sjögren's related symptoms that I have had to deal with since my journey with this illness began. Please don't panic! It does not mean you will have the same symptoms or even have it as severely as I do. But, it is important to be as informed as possible. Only YOU  are going to be the person driving the bus towards wellness.

Continue reading here.