Saturday, August 30, 2014

I Really Need One of These

Guys. It's pretty amazing what a few pain-free days will do for a person. Well, specifically for this person, anyway. I am enjoying not only the relief but what seems to be an attitude change as well. I feel more optimistic. Like anything and everything is possible.

But my expectations for the results of this epidural are seriously getting out of control. How do I know this? Because I made John stop the car so that I could look at a motorcycle sitting by the road with a for sale sign on it.

What a little beauty. Just looking at it made me want to hop on it, give the kick start a go, and zoom off. It was a small motorcycle just slightly larger than the one from my youth.

Back when I was a teenager, I used to ride one exactly like this while wearing a sparkly gold helmet that matched the bike's paint job:

Awesome vintage ad found here

Oh, man. I loved that motorcycle. Dad bought it for my sibs and me with the idea that it was to be used for practical things like checking fence lines and running in to the local tractor supply to pick up small parts, etc.

Yeah. Right.

We did do those things on our beloved Yamaha Enduro, but mostly just drove the heck out of it. We had the perfect place to do it, too: Dad owned a couple of farms that adjoined and had miles of what we called "lanes" which were basically dirt roads on the property. And when I got my driver's license with a motorcycle certification, all the country roads in the area were suddenly all mine as well.

Sigh. What fun. Even though I had brothers and sisters, this zippy little gold-colored bike usually had my fanny on the seat. My older sister took a tumble on it once and wasn't thrilled with motorcycling after that, and my brother quickly decided that it was a wimpy bike and bought himself a big old Honda. Pffft. Whatever. I thought my little Yamaha was just perfect.

Fast forward to the present, when a plus sized, 56 year old woman riding a euphoric wave of nostalgia imagines herself astride a similar motorcycle, zooming around our little town. Can't you just see it?

Hoo boy.

What a fun little daydream that is...... ah, but it's time to come back to reality, Julia my girl.

Someday I'll buy my grandkids one.

Friday, August 29, 2014

It's All Good

Ahhhhhh. Thank you, thank you, whoever developed the steroid epidural. 

That is all. Carry on, people.

Thursday, August 28, 2014

Open Notes? Absolutely.

Figure from Open Notes study illustrating access to doctors' notes found here

I enjoy reading Dr. Fred Pelzman's blog over at MedPage Today. Read this from MedPage Today:
Fred N. Pelzman, MD, a primary care physician at Weill Cornell Internal Medicine Associates, writes a weekly blog for MedPage Today, and in his spare moments he reads about what's going on in the world of primary care medicine. Take a few minutes to check out Pelzman's Picks -- a compilation of links to blogs, articles, tweets, journal studies, opinion pieces, and news briefs related to primary care that caught his eye.
His Pelzman's Picks interest me, and one link from yesterday was particularly engaging entitled When Patients Read What Their Doctors Write  and published on NPR's health news page. Here's a snippet:
The woman was sitting on a gurney in the emergency room, and I was facing her, typing. I had just written about her abdominal pain when she posed a question I'd never been asked before: "May I take a look at what you're writing?" 
At the time, I was a fourth-year medical resident in Boston. In our ER, doctors routinely typed visit notes, placed orders and checked past records while we were in patients' rooms. To maintain at least some eye contact, we faced our patients, with the computer between us. 
But there was no reason why we couldn't be on the same side of the computer screen. I sat down next to her and showed her what I was typing. She began pointing out changes....continue reading here
The author of the piece, Dr. Leana Wen, an attending physician and director of patient-centered care research in the Department of Emergency Medicine at George Washington University, went on to comment about the concept of giving patients access to the information in their charts, specifically the doctor's documentation about a visit or exam. You can read more about this practice inspired by a study published in the Annals of Internal Medicine in 2010 conducted by a team of physicians and nurse researchers here: Open Notes: Doctors and Patients Signing On:
Few patients read their doctors' notes, despite having the legal right to do so. As information technology makes medical records more accessible and society calls for greater transparency, patients' interest in reading their doctors' notes may increase. Inviting patients to review these notes could improve understanding of their health, foster productive communication, stimulate shared decision making, and ultimately lead to better outcomes. Yet, easy access to doctors' notes could have negative consequences, such as confusing or worrying patients and complicating rather than improving patient–doctor communication. To gain evidence about the feasibility, benefits, and harms of providing patients ready access to electronic doctors' notes, a team of physicians and nurses have embarked on a demonstration and evaluation of a project called OpenNotes. The authors describe the intervention and share what they learned from conversations with doctors and patients during the planning stages. The team anticipates that “open notes” will spread and suggests that over time, if drafted collaboratively and signed by both doctors and patients, they might evolve to become contracts for care. [Bolding mine] Continue reading here
I would agree completely with the team's anticipation of a shared plan of action which includes input from both clinician and patient. One of the reasons this study and it's commentary caught my interest was the fact that this is how my rheumatologist Dr. Young Guy conducts all of our visits. I can read the text of his entries into my chart online soon after the visit. My new internal medicine physician does this as well. If I have trouble recalling exactly what was discussed, the doctor's note appears in my after visit summary that I can view online or receive a paper copy when I leave the appointment.

I appreciate this now more than ever. I do view my medical care as a collaborative process and I never have to wonder how I am being assessed and what conclusions and plans are reached by physicians and other health care providers since it's all there for me to see. Most of my lab and test results are there as well, and if they're not I know that I will be receiving a phone call explaining the results with a follow up letter stating the same info.

Not all physicians in my medical services provider system follow their example, however. I'm delighted that my doctors do -- and I hope that others see the benefit of active patient involvement and will begin sharing their documentation as well.

Does your physician enter information about your visits on a computer in the exam room? Are you able to see and discuss what is being entered in your medical record? And if not.....

.....are you considering asking why not?

Wednesday, August 27, 2014

This is Good

The folks over at the pain clinic LOVE those plastic ID bands, for which I'm grateful. One has my name and information, the other my drug allergies. AND they marked the correct butt cheek with a sharpie indicating "x marks the spot". Excellent identification, people.  

Yesterday's epidural went swimmingly and as I write this I'm lounging comfortably with an ice pack propped behind my back. Nice.

John is relieved and happy that it went well, as am I. He's decided that we need to celebrate my pain-free tushie by putting it -- and me --- into Goldie and head out over the long holiday weekend on one of our famous meandering getaways.

I can support that idea wholeheartedly.  The ahhhhh factor registers consistently high on the John-and-Julia-rest-and-relaxation-meter after trips like these. So after a day or two of rest and ice and assuming that my recovery continues uneventfully, we're throwing some ice packs, water bottles, our luggage, my favorite travel sized pillows and snuggly blankies, hat and sunscreen, and a Garmin updated with the latest map information for the continental US into the car and begin a new adventure.

Destination? East. After that, who knows? Anecdotes and pictures to follow. Woo hoo! I get a mental boost of positivity when we scrutinize our road atlas planning potential destinations and points of interest. We debate the merits of various snacks and drinks to include in the car and I download several audio books for the journey. We love planning these things almost as much as actually participating in them. Almost. Because if I have a pleasant outing looming in my near future, the anticipation tends to put a rose colored tint to my emotional glasses. Yeah. This makes me happy.

When people ask me how I can keep a somewhat healthy attitude after dealing with the long course of my disease, I tell them about events such as these. I know that I am incredibly blessed that John actually likes hanging out with me for days on end cooped up in the car; and that he has a job that allows these types of outings; and that so far we have returned from our trips still liking each other. Excellent.

Many years ago as a staff educator for caregivers in an Alzheimer's facility -- dang, I still miss that job -- one of the classes that I taught dealt with mental illnesses including depression. I often find myself thinking back to the curriculum for that class provided by the state. It contained some really good information regarding these diseases and the medications used to treat them, but more importantly it also included behavior modifications and strategies to minimize the severity of depressive symptoms. One of these strategies that had great success was planning positive events and to encourage the patient and their caregivers to follow through on that planning.

It was good information and advice not only for those with diagnosed depression; but for all of us regardless of the type of our challenges.

Pleasant events in the future for anyone out there? I recommend them highly.

Tuesday, August 26, 2014

Third the Charm?

Image found here

Well guys, by the time y'all read this I'll be back in the pain clinic having my third epidural steroid infusion into my L5 vertebrae area.

I'm hoping that I get results similar to my last one: I had good pain relief that lasted for about five to six weeks, which is pretty typical of a successful epidural. I've been cautioned that this is my last for the year. Not sure how a year is defined; I'll have to get that clarified. But in the meantime, this infusion is staving off that surgical consult.

The results of my most recent MRI (last Saturday) and my response to the epidural will be the deciding factors in whether my physiatrist hits the "send" button on that request for me to see a surgeon.

It will be an interesting week. I'll keep you posted.

Monday, August 25, 2014

Taking a Breather

I'm resting up after our adventures yesterday. In the meantime, I thought you might enjoy this lovely picture that was shared on the Sjogren's Syndrome Foundation Facebook page. Doesn't looking at it make every muscle in your body relax?

Ahhhhh. I can't wait for fall.

Sunday, August 24, 2014


Someone pointed out that I didn't include a picture of the results of our adventure yesterday. So here you go. My bad.



I just love that word.

Gaaaaaaal-ahhhhhh-vannnnnnn-ting. It rolls off the tongue nicely, doesn't it?

Galavanting is the perfect word to describe what John and I did yesterday. He loves a quest, and so do I. Here's his latest.

You may recall that the Bearded Dog Pub, formerly known as that big room over the garage previously used as Son's bedroom, sports a kegerator. What's a kegerator, you ask? Here's the definition as described by Wikipedia:

Kegerator is a residential draft (draught) beer dispensing device. A keg, typically of beer, is stored in a refrigerated container in order to keep the keg chilled. The user is able to maintain a tapped keg in such a device for extended periods of time, usually a couple of months, without losing any quality in the taste of the beer. A kegerator may be purchased in its finished form or built from a re-purposed refrigerator or a freezer with special equipment. A Kegerator is sometimes used in a Man cave, or more rarely, a woman cave.

I like the woman cave part. .::snort::.

Hell will freeze over before I devote any time or effort to an appliance dedicated to beer.

But it's a fun project for John. We put a sixth of a barrel in ours, which lasts for varying amounts of time depending on how often Greg and John host dart tournaments up in the pub. John takes an enormous amount of time debating the merits of various local craft breweries, and once selected, purchases a tap handle from the brewery as well.

Because the tap handle should match the keg, for cryin' out loud.

This particular keg contains Pelican Brewery Surfer's Summer Ale. Our search for the Pelican Brewery's tap conveniently shaped like a pelican was successful thanks to the obliging staff. We took the scenic route home feeling quite smug.

Overall a very relaxing day spent leisurely driving with the hubs. Brilliant. 

Saturday, August 23, 2014


I'm learning to appreciate two times of the day that I had previously ignored: sunrise and sunset. I used to look at a sunrise and while enjoying it's beauty, was impatient for the sun to rise higher in the day so that I could get out and about under it's rays. And as the sun went down, I considered my day over.

Not so any more.

Now, I view the rising and setting of the sun as two safe times to enjoy the sun's brilliance without feeling the need to shield myself with hats, scarves, and long sleeves. Ahhhh. Freedom.

Friday, August 22, 2014

Block Those Rays

I remember several years ago when I first realized that it was important to me to protect myself from the sun. I wigged out when I took a closer look at sunscreen ingredients:

After last week's jaunt into the desert and sunshine, it's obvious that my photosensitive skin that has been lulled into submission by the Pacific Northwest's cloudy winter is re-emerging and is cranky as heck. 
I need to get serious about using sunscreen. Every day. No excuses. Or I'll find myself dealing with a repeat of last summer's ridiculously difficult splotch/hive episode. 
So I'm on a quest to find a sunscreen that effectively blocks both UVA and UVB radiation, yet isn't laden with chemicals that could potentially create more problems than it prevents. As with most of my quests lately, this is proving to be a very complicated process. 
Nothing is simple in Julia Land.
Too true. It wasn't simple. Soon after writing this post, I embarked on a mission to find a safe, natural and effective sunscreen. After realizing what a difficult task that was, I gradually decided that I would use a commercially produced one but sparingly.

How times have changed.

These days, I buy gallons of this:

You can buy your very own here. Be sure to choose the Sjogren's Syndrome Foundation as a charitable donation recipient on Amazon Smile. 

I apply it generously and often and on any part of my body that may have a chance of seeing sunlight. I swear if it were possible, I'd take a bath in this stuff.

It amazes me how incredibly sensitive my subacute cutaneous lupus erythematosis rash is to sunlight. A few days ago, I had meticulously applied lotion sunblock to my face and neck, but forgot to use the spray version to cover my arms and legs. I hopped into the car feeling smug and all UV protected, especially since I was wearing my hat and good sunglasses. But I let my left arm propped on the open window, which meant that where my 3/4 sleeve shirt left off, my unprotected skin began.

Later that day, I was irritated to see new lupus lesions beginning on my forearm. It took a minute or two to realize that I had forgotten a very important step this morning. Good grief. I think I was only in the car for about an hour, but what an effect that hour had on my arm.

I tend to use the Neutrogena products because they're unscented and seem to stick around on my skin longer than other products. (Wish I were reimbursed in some way for saying that, but dang. Nope.)

You can read more about sunscreens and photo protection here and here.

What's your favorite sunblock?