Monday, August 3, 2015

Reconnecting

A dear friend of mine from college and her husband were attending a conference in a resort area in Idaho; so John and I hopped into Goldie and met them there for the weekend. What fun. Beautiful surroundings and good friends.

Excellent.






Sunday, August 2, 2015

Never Mind

I still think it's as ugly as heck.


So. I'm sure that I have made it abundantly clear that I harbor serious.....um.....negative thoughts with respect to my knee brace. I threw a three day tantrum after I was finally in possession of it. One of the threats I made was to drop kick the thing into the next county.

It was tempting to just give up on the thing, and on the fourth day I eyed it lying on the floor in my closet thinking that maybe I should cram it back into a corner under clothes and pretend the whole thing never even happened. But I sat down and began to strap it on over some yoga pants anyway.

What a shock when I stood up and realized that it fit. Without pain.

How does that happen overnight?!

I took it for a test drive around the house and had to grudgingly concede that I had less pain when I wore it. Heck, I could even do stairs with less discomfort.

This has taught me a couple things: first, that when advised to take time to get used to wearing the brace, this is good advice. Secondly, it reminded me of days when I could count on walking and doing stairs without significant pain. Which made me want to schedule that knee replacement sooner than January as I previously thought.

Saturday, August 1, 2015

National Psoriasis Foundation: The Bugs are Pulling the Strings

Wonder what kind of bacteria was chasing around the intestines of this guy? Image found on WikiMedia

Thanks to Kate Hand (@KateHand3) for tweeting a link to the National Psoriasis Foundation's interesting discussion regarding the effect of the gut microbiome on the immune system:
Microbes outnumber us. Our bodies have about 10 trillion cells each, but we host approximately 
100 trillion microbial cells. The gut alone, which includes our stomach and intestines, is home to about three pounds of bacteria. Microbes also are, in some ways, smarter than us. They're not just taking up space; many actually tell parts of our immune system what to do. 
We already know that our immune system targets microbes — that's how it defends us from harmful pathogens. Researchers now realize that some microbes are actually an important part of our immune defenses, controlling the development of key components of our immune system. 
"Microbes have figured out our immune system in ways that we, as scientists, still don't fully understand," said Sarkis Mazmanian, a microbiologist at the California Institute of Technology. 
We rely on our immune system to distinguish between microbial invaders that might make us sick and the harmless bacteria that are always inside us, said Mazmanian. Based on this distinction, the immune system decides when and when not to attack. But the immune system doesn't make this decision by itself. 
"Part of the decision-making process is actually controlled by specific gut microbes," said Mazmanian. 
In other words, the bugs are pulling the strings.
You can read the entire article here.

Friday, July 31, 2015

Brace Yourself, Julia


Want to hear all about my dumb stupid knee brace?

Y'all are my captive audience, so here goes.

Dr Young Guy ordered a custom offloading knee brace  for me three - count 'em - three months ago. The first one arrived about six weeks after it was prescribed. Yes. I thought that was a bit tardy in arriving too. I was having trouble making it stay on my leg without it dangling down around my ankle, so thinking that it wasn't doing my knee any good that way, I took the thing back to the company responsible for fitting and ordering it for me. After which they informed me that it was sized wrong.

"Did you lose a whole bunch of weight?" the tech irritably asked me.

NO, I only wish I had! I snapped back. Equally irritably.

He took a new set of measurements, told me that it would arrive in two weeks, and sent me on my way. Which brings us to a few days ago when I claimed this thing once again, and I've got to say I am not impressed. I'm supposed to be wearing it to take pressure off my severely arthritic knee by re-aligning the joint; and this is also supposed to make getting around less painful. But I've got to say that even after gradually acclimating myself to wearing it; it seems to be causing more problems than solving.

I'm ready to drop-kick it into the next county. With my good knee, of course.

First off, even though the prosthetics company euphemistically calls the sensation 'pressure', it hurts. In my knee deformity, which is called valgus, the knee joint collapses inward giving the appearance of knock knees, so the brace is made to apply pressure on the interior side of the knee joint and the outer side of the calf. And I'm here to tell you, this hurts.

Secondly, what is a person supposed to wear when using this thing? I have never been a dress or a skirt type person. But it's too bulky to fit under pants, and it doesn't fit correctly if I put it over pants. So I bought a few maxi skirts and have been swishing around in them which is also making me cranky. Skirts are, well....they just make me feel dumb. If I were svelte and tall, yeah, I could see that they could be flattering. But for an average height, plus-sized lady?

Not so much.

My daughters think that I should wear leggings and a tunic. Which I would consider if most tunics came down almost to my knee, but I haven't found any yet. Besides, I don't want to invest in a whole new wardrobe (which I hate) just to wear an appliance that may end up in some one's back yards a whole county away eventually.

The whole idea here was that the brace in combination with prednisone injections would delay the necessity of a knee replacement. But my doctor after seeing my latest X-rays, commented that the question would not be IF I needed a new knee, but WHEN.

Grr. I'm reluctantly beginning to see that I may have to just bite the bullet and think about another surgery. Perhaps I can hang in there until January when the holidays are over.......

Thursday, July 30, 2015

How Many Spoons Do You Have Left Today?

Thanks to Lori-Ann Holbrook (@citygirlflare) for her tweet containing this infographic which does a great job explaining the spoon theory.


Not familiar with the spoon theory by Christine Miserandino? Read this.

Wednesday, July 29, 2015

SSF Blog Ask the Doctor: Sjogren's and Vitamin D

Salmon is a good food source of Vitamin D. Image found on Wikipedia.

The Sjogren's Syndrome Foundation blog 'Conquering Sjogren's has put up yet another excellent post, this one discussing the benefits of Vitamin D. You can read this and other posts from the SSF blog here. 

Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Ask the Doctor: Sjogren’s and the Benefits of Vitamin D
Posted on Tue, Jul 28, 2015

Q. I keep reading about the use of vitamin D with autoimmune diseases. How important is it for Sjögren’s patients?

A. Vitamin D is important in bone and cartilage homeostasis. New evidence indicates that vitamin D may have extraskeletal benefits on several systems including the immune system. Autoimmune diseases such as systemic lupus (SLE), and Sjögren’s have been associated in a few studies with low vitamin D levels. However, the significance of low vitamin D levels in disease pathogenesis and prevention is unclear.

What are the sources of vitamin D? Vitamin D has two precursors, Vitamin D2 (ergocalciferol) and Vitamin D3 (cholecalciferol). Vitamin D3 is synthesized mainly in the skin by the action of ultraviolet light. Vitamins D2 and D3 are found in very few dietary sources, such as fish oils or fortified dairy products, as well as supplements.

Recommendations regarding desirable levels are based upon evidence related to bone health. Some controversy exists, but experts such as the International Osteoporosis Foundation suggest that a minimum level of 30 ng/mL is necessary to decrease the risk of falls and fracture.

Vitamin D deficiency is very prevalent in the general population and some studies indicate a higher prevalence of vitamin D deficiency in certain autoimmune diseases. However, these studies have not been conclusive. As an example, in SLE patients, recent studies have indicated the prevalence of vitamin D deficiency to range between 38% and 96%. The wide variation can be attributed to many factors, such as the age of the patients recruited, geographic location, season at the time of the study, ethnicity, medications used and the accuracy of the vitamin D assay method used.

In Sjögren’s, few small trials have been performed to assess the prevalence of low vitamin D levels and the association with disease severity. No conclusive data has been assembled to indicate that subjects with Sjögren’s have lower vitamin D levels than healthy subjects, or to suggest a pathogenic relationship between lack of vitamin D and development of disease.

Patients with Sjögren’s can be prone to vitamin D deficiency. Photosensitivity, where exposure to ultraviolet light triggers a rash is prevented by avoiding exposure to sunlight, could contribute to lower levels of vitamin D. Furthermore, certain medications may aggravate vitamin D deficiency. Chronic corticosteroid and hydroxychloroquine use are suspected to affect vitamin D concentration and activity respectively.

In summary, although there are no guidelines regarding optimal vitamin D levels for extraskeletal and immune system health, it would be reasonable to recommend that patients be screened for vitamin D deficiency and treated with supplementation. The American College of Rheumatology recommends a daily intake of 800–1000 IU per day of vitamin D in patients on treatment with steroids.

by Stamatina Danielides, MD

Tuesday, July 28, 2015

Sjogren's Society of Canada: So True

Thanks to the excellent Annette McKinnon, author of the Here's Your Gold Watch - Rheutired blog and patient advocate for tweeting this from the Sjogren's Society of Canada:

Monday, July 27, 2015

Non-Pharmaceutical Interventions for Sjogren's -- A Systematic Review

Take a look at this recent article that appeared in Reuters Health, and give me your unvarnished opinions:

NEW YORK (Reuters Health) - Currently, there's no evidence to support non-pharmacological interventions for primary Sjogren's syndrome, according to the first-ever systematic review on the topic. 
The review, published online in the June 30 in Rheumatology, found no evidence that an oral lubricating device, acupuncture, lacrimal punctum plugs, or psychodynamic therapy improve quality of life for patients with primary Sjogren's syndrome.  Continue reading on Nurses Medscape here. (Requires free registration to view)
After reading the headline and first paragraph of this story, I thought it deserved close attention. So I read the article completely, and then found the actual full-text review published online in the June 2015 issue of Rheumatology:

Katie L. Hacket et al. 
ABSTRACT: 
Objective. To evaluate the effects of non-pharmacological interventions for primary SS (pSS) on outcomes falling within the World Health Organization International Classification of Functioning Disability and Health domains. 
Methods. We searched the following databases from inception to September 2014: Cochrane Database of Systematic Reviews; Medline; Embase; PsychINFO; CINAHL; and clinical trials registers. We included randomized controlled trials of any non-pharmacological intervention. Two authors independently reviewed titles and abstracts against the inclusion/exclusion criteria and independently assessed trial quality and extracted data. 
Results. A total of 1463 studies were identified, from which 17 full text articles were screened and 5 studies were included in the review; a total of 130 participants were randomized. The included studies investigated the effectiveness of an oral lubricating device for dry mouth, acupuncture for dry mouth, lacrimal punctum plugs for dry eyes and psychodynamic group therapy for coping with symptoms. Overall, the studies were of low quality and at high risk of bias. Although one study showed punctum plugs to improve dry eyes, the sample size was relatively small. 
Conclusion. Further high-quality studies to evaluate non-pharmacological interventions for PSS are needed. Continue reading here. [bolding mine]
After reading the Reuters article and the Rheumatology review, it was clear to me that the review which included 1463 studies and 17 full text articles was very thorough; and I can whole heartedly agree with one of its conclusions, which was "further high-quality studies to evaluate non-pharmacological interventions for PSS are needed." More high quality Sjogren's studies? Absolutely.

But I was a bit confused by the review conclusion which also states,
Overall, we identified no current evidence to support any non-pharmacological interventions to improve the quality of life for people with pSS. [italics mine]
The assumption being that the only non-drug Sjogren's Syndrome treatments available to patients are oral lubricating devices, acupuncture, lacrimal puncture plugs, and psychodynamic therapy.

Surely there's other non-pharmacological interventions for Sjogren's being studied? Such as:

  • anti inflammatory diets
  • autologous eye drops 
  • graded exercise therapy

...to name just a few. Can you think of more? Add them in the comment section below.

Sunday, July 26, 2015

We Have Apples

Whoa. We have three apple trees in our yard; none of which have produced many apples over the last three or four years. But this year? In supposedly a bad winter and summer for apples, one of my little trees has gone apple crazy. It's a variety developed by Washington State University specifically for our climate here in the Pacific Northwest and for the life of me, I can't remember it's name. It's developed to resist diseases related to wet weather and the fruit is ripe earlier than other varieties.

Anyway, this little guy is extremely happy this year. John picked the first of just a few of the apples:


Aside from eating them fresh or stealthily leaving bags of apples on our neighbors' doorsteps, I need suggestions about how to use all of these beauties.

My sister in law told me that next year our trees need to be a little less happy. She's probably right.

Saturday, July 25, 2015

True Story

Should be a historical marker there to commemorate the event. 

John and I met on July 25, 1978. Whenever we tell the story of that meeting, our family and friends crack up laughing in disbelief. But it's the gospel truth, really it is. I'm a weirdo person and so it is appropriate that my introduction to my future husband would be weirdo as well.

Oh, hey! Today's July 25th. Huh. Want to hear the story? Of course you do. So get yourself some popcorn and a beverage and settle in. It's a long story:

So I was a newly graduated RN and worked on a medical/cardiac step down unit in a small hospital. And on July 25th, had my first of those experiences that all nurses don't forget - the first death of one of her patients.

She was an elderly lady, sweet and very, very ill. When her congestive heart failure stopped her heart, there was nothing that our Code Blue team of physicians and nurses could do to revive her. And so after the decision was made to discontinue resuscitation efforts, the room cleared of personnel and equipment, and I was left alone with my patient.

I knew what to do. In fact, I was clutching a copy of our policy and procedure manual opened to the "Patient Care After Death" page as I looked at her white and very still face. So I methodically followed the procedure, the final step requiring me to escort her to the morgue. As I rode the elevator back up to my nursing unit, tasks completed, gradually my Julia the professional persona faded and Julia the person resurfaced. I felt as though there should have been something more that we could have done to extend this sweet wonderful woman's life.....and as I returned to the nursing station and began documentation on her chart, I held back tears.

When my shift was over, I sat in my little brown car (I affectionately called her Woodtick) mulling over the events of the day. I thought about the fragility of human life, and despaired that nothing we did during our life mattered because eventually WE WILL ALL DIE. .::with forearm thrown dramatically over my brow::.

Yes. I was overreacting.

I didn't want to go back to my apartment. It was late afternoon on a beautiful summer day, and a nearby little lake with a swimming beach beckoned. I remembered that I had one of my mom's old-lady style tank swimming suits in my car's back seat. I had borrowed it the last time I visited my parents and it was rolled up in a beach towel ready to return to Mom. I don't want to run home and get my suit. I'll wear Mom's, I thought. It's baggy and faded but I'm not going to see anyone that I know anyway.

Sure thing.

I grabbed the suit and towel, walked back into the hospital lobby's restroom and changed; headed back to Woodtick and zipped over to the lake. As I pulled into the parking lot, I noticed that the main beach was crowded with teenagers and little kids. Not a good setting for my need to ponder the MEANING OF LIFE AND THE EVENTUALITY OF DEATH. So I hiked along the trail that led to the other side of the lake and a smaller beach.

Ahhh. It was deserted. I spread out my towel and waded into the lake. I was floating on my back deep in gloom and doom thought when I heard someone splashing my way. Doing an expert crawl stroke, I might add. He popped his head up from the water.

"Are you ok?"

Duh. I'm fine.

"Well, my friend and I saw you swimming alone, and then we lost sight of you and were worried that you had drowned or something!"

I laughed and assured them that I was perfectly Ok. He and his friend swam back to the beach with me and sat we down on the sand.

Oh, great. I thought. I meet two good-looking guys and I'm wearing my mother's baggy blue swimming suit. Just my luck...

We exchanged names all around and chatted about things. John and Scott told me that they were seniors at the local college. I shared that I was an RN.

"Gee. You don't look old enough to be a nurse!" John exclaimed.

"Well. You look too OLD to be in college!" I shot back.

He sputtered through some kind of awkward apology and we moved on to other topics during which we discovered that we all were the same age. The three of us gabbed for the rest of the afternoon, some of it spent bobbing in the cool lake, some stretched out on the beach. Eventually I decided it was time to head home and as I was shaking the sand out of my towel, John cleared his throat nervously.

"So. Do you want to go out tonight?"

What the hell, I thought. I don't know this guy from Adam and for all I know he could be an axe murderer but it doesn't matter because eventually WE WILL ALL DIE.

"Um. Ok." I said. And gave him my address.

As I walked back around the lake and got into my car, I was having serious second thoughts. What was I thinking?! I had never let a guy pick me up in a public place EVER. But I had no way to contacting him to cancel out, so I went home, showered and changed.

The doorbell rang, and John was at the door. He looked at me, was silent for a moment, and then asked, "Is Julia here?"

Are you kidding me?! I thought. What a dope!

"No, she left with some guy that picked her up at the beach." I said sarcastically.

He looked disappointed. Then after a moment, said, "So. What are YOU doing tonight?"

Geez. This is probably a really bad idea, I mused. I managed a polite fake laugh thinking that surely he was trying to be funny in an extremely weirdo way, grabbed my purse, and we headed out to his car. Which was a huge blue station wagon with a canoe strapped to the top.

We met Scott at a downtown bar and chatted while we sipped beer and munched on peanuts. As Scott and I laughed about our meeting at the lake, John brightened perceptibly (he later told me that this was the point that he realized I was actually JULIA) and joined the conversation, eventually contributing funny and intelligent comments.

Maybe not so goofy after all. And very nice looking......

Later as the guys dropped me off at my apartment, John conveniently dropped his wallet (he still insists that it was an accident). I noticed it as they left, grabbed the wallet and tried to get their attention to return it, but they had already left the parking lot. I could see the canoe zipping along the street and realized that I wouldn't be able to flag them down.

So I went back inside, and immediately went through the entire contents of John's wallet.

Hey. I KNOW y'all would do it too, wouldn't you?

Interesting, I thought. No picture of a girlfriend. Hm.

The next evening he returned to pick up his wallet, and the rest..........is history.

Thirty seven years later, here we are and when John tells the story, his explanation for not recognizing me when he met me at my apartment is, "Well, I didn't recognize her with her clothes on!"

Oh, John......the weirdo-ness never went away, did it? But I'm glad you eventually recognized me, my hon. I can't imagine what my life would have been without you.

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