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 home..........it 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. 

Ahhhhh. 

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, John........my 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 juliaschulia@gmail.com 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.

Wednesday, March 30, 2016

Time to Get Moving

A month ago my doctor recommended that I take an online weight management class offered by my clinic. It's structured really well: I "attend" weekly classes by logging in to a website with my computer while wearing headphones that have a microphone feature. All class members are given a large colorful workbook and other resource materials. We're asked to participate verbally, by entering text, and by completing online question tools.

When my internal medicine doc suggested that I take this course, I had a mental image of me sitting in front of a computer screen while writing in a book which contained all that diet and weight information that I supposed I already knew. Which I thought was a really boooooorrrrrrriiiiinnnng way to learn anything. So I was pleasantly surprised to find out that this class was far more interactive and interesting.

Last night's class focused on the importance of being active and contained this little gem; I wish I could remember to whom I should attribute it, because it's a real goodie:

Those who can't find time to exercise will be forced to find time for illness.

Whoa. That's a powerful way to reframe the importance of exercise in health management, don't you think? I was reminded of the many, many testimonials about the therapeutic value of exercise sent to me by readers. For some, the focus on gentle exercise altered the effects of their autoimmune disease immensely.

I was told to examine my own exercise habits during the class which made me squirm in my comfy recliner (having my feet elevated and a plump pillow snugged in behind my back). Because I am not inclined to leave my favorite chair (also conveniently positioned squarely in front of the television, I might add....) at all right now. Oh, sure -- I am conscientiously following my physical therapist's directives, but those exercises are easy stretching moves that don't raise even one drop of sweat on my brow.

At the end of class, we were asked to set goals for the week ahead. Each week we have this assignment, but this time we were told to set exercise related goals. And we were told that we had to share this goal with those that would keep one accountable.

So. That means you fine folks. Are you ready to keep me on track?

I decided that I would commit to taking Lulu for walk for a minimum of ten minutes in duration every day this week. After I had written it, I thought my goal looked pretty pathetic, but after thinking about it I realized that the biggest challenge for me in this isn't the fact that I'm walking Lulu, and a ten minute walk is very doable for me right now. For me, the really hard part is the commitment to doing something EVERY DAY. I strongly dislike anyone telling me what to do. Even myself. Which causes my Bratty Inner Child Julia to make her very unwelcome appearance.

I promise to keep ya'll up to date with my progress this week even if it includes a confession that I didn't meet my goal. I'll tell the truth, the whole truth, and nothing but the truth.

Are you ready for this, Lulu?


Apparently not.......

Tuesday, March 29, 2016

To Refresh Your Memory, Terese....

After dinner on Easter Sunday I was sitting on the couch with Terese. We had our legs stuck out straight and were slumped down on the cushions. Eating at the Ham-O-Rama will do that to a person. I was wondering why I hadn't thought to wear pants with an elastic waistband whenTerese said, "I noticed you haven't been writing in your blog as much lately."

Yup. I plan on being less of a lazy butt now that things have settled down a bit around here. 

"Usually I read your blog every day to see what I had been doing the day before."

Needing daily reminders, girl? Yikes.

Well, then. This post is for you, Terese. It doesn't apply to what you and Greg were up to yesterday, but here's an Easter day reminder:

 . 




Wait. Did you get in on the Peep-Tini thing?








The mustard glaze won the annual Easter BEST HAM GLAZE competition yet again. Even though there were some attendees that attempted a Mustard vs Pineapple caucus, and a problematic few went as far as to demand a contested convention; Mustard prevailed and remains undefeated.





Everyone enjoyed this year's after dinner game which was a Peep flinging contest.








Does that spark a few memories, girl? Ahhh. Excellent day.

Photos by Matt, Laura, and me. Email me to request permissions for use of photos.

ShareThis