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.......

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.

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

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:

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:

Non drug interventions of Sjogren's syndrome not supported by evidence . 

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:

A systematic review of non-pharmacological interventions for primary Sjögren’s syndrome

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.

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.

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.

Good Clean Bread

Of course I had to buy the book as well. 

Y'all may recall my several months of dietary angst earlier this year during which I finally figured out that dairy was the item in my diet that was causing my GI tract to be cranky. Which means that wheat is not my nemesis as I had previously thought.

Well, now. Hellllooooooo bread!

I've been noshing on various types of breads ever since and my innards have been very happy. But after reading the ingredient lists on commercially made bread, suddenly the rest of me wasn't happy. Even breads on the grocery store shelves that were made from organic ingredients still had things like 'enzymes' and 'dough conditioners' listed.

What is that stuff?! Yuk.

I love bread. Just love it. I used to roll up my sleeves and knock out beautiful golden fragrant home made loaves at the drop of a hat. But ever since Sjogren's fatigue made it's appearance, all the kneading involved in home made bread made it a thing of the past. I couldn't justify expending that amount of energy required to make just a couple of loaves. Then, (Oh joy!) it occurred to me that there were fancy machines out there that did all of the heavy lifting when it came to making my own bread. AND that I could control every ingredient that went into it. Amazon to the rescue: within two days my brand spankin' new machine was sitting on my counter.

This called for a field trip to find good quality bread ingredients. So yesterday I snagged my friend Susan for an outing to the Bob's Read Mill Natural Foods store to shop for organic locally ground flours. What a hoot. I timed our arrival so that we could visit their bakery and restaurant after we made our purchases.

Yum. I can personally recommend the iced banana cookie bars with great enthusiasm.

After a few discussions with the very helpful staff, I decided to purchase a whole wheat white flour and a superfine cake flour. And, once home, couldn't wait to get the first batch of bread going. I'm writing this as I'm smelling the incredible perfume of baking wheat, yeast, sugar, salt, water, and oil.

AND NOTHING ELSE.

Oh my gosh. Success.

You can read more about Bob's Red Mill here.

World Sjogren's Day 2015: Happy Birthday, Dr. Sjogren

Image source 

Today is World Sjogren's Day! I thought this from the Sjogren's Syndrome Foundation says it all. Check it out:

World Sjögren's Day 2015 

World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren's in 1933, which has helped all patients find answers to their health questions.

This July 23rd, the Sjögren's Syndrome Foundation, SSF, joins with other Sjögren's organizations around the world to celebrate the 6th annual World Sjögren's Day and what would have been Dr. Sjögren's 116th birthday.

World Sjögren's Day also allows us to recognize advancements made in Sjögren's this past year and the incredible progress the SSF has made on behalf of Sjögren's patients. This includes our current development of Clinical Practice Guidelines for Sjögren’s that will help standardize patient care by giving physicians a roadmap of how to treat, monitor and manage their patients with the disease.

Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands. Four primary symptoms include fatigue, joint pain, dry eye and dry mouth, but Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.

With upwards of 4,000,000 Americans suffering from Sjögren’s, it is one of the most prevalent but less known autoimmune disorders. This is because Sjögren’s is not a “cookie-cutter” disease, often being overlooked or misdiagnosed since symptoms can manifest in various ways and affect every patient differently.

Currently, there is no cure for Sjögren’s but an early diagnosis and proper treatment are important for preventing the more serious complications of the disease while also helping to improve a patient’s quality of life. On average, it takes 3.9 years from the time a patient seeks treatment for their symptoms to receiving a formal diagnosis. This is why in 2012 the SSF launched a BOLD 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

How Can You Help Make A Difference?

Make a tax deductible donation to support research and education for the disease that Dr. Sjögren devoted his life to:  Click Here to donate

Use this opportunity to help raise awareness for this little known but very common disease by printing out an SSF fact sheet and share it with your friends, family, neighbors, work colleagues and local community: Click Here for SSF Fact Sheet

Anchors Aweigh

Isn't she beautiful? 

Guys. This is beyond cool. In August, John and I and several friends are going to spend an afternoon on the tall ship Lady Washington. I'm told there will be a fierce battle between the Lady and another of the amazing tall ships replicas - the Hawaiian Chieftain.

Does she look familiar? You may recognize her from her role in the Johnny Depp movie 'Pirates of the Caribbean'.

I'm thinking our gang needs some appropriate attire for our on-ship adventure. What do you think would be the best theme? Hale and hearty sailors or - and this one's my favorite - PIRATES?

Dang. These would be perfect. You can buy your very own here. 

You can read more about these beautiful historic ships on the Grays Harbor Historical Seaport Authority's website here. 

NYT Well: Rethinking Exercise as a Source of Immediate Rewards

I would agree with the conclusion of this study of exercise as reported by New York Time's Well blog:

“Health is not an optimal way to make physical activity relevant and compelling enough for most people to prioritize in their hectic lives,” Dr. Segar said in an interview. 

Though it seems counterintuitive, studies have shown that people whose goals are weight loss and better health tend to spend the least amount of time exercising. That is true even for older adults, a study of 335 men and women ages 60 to 95 showed. 

Rather, immediate rewards that enhance daily life — more energy, a better mood, less stress and more opportunity to connect with friends and family — offer far more motivation, Dr. Segar and others have found.  

Read the post in it's entirety here. 

I admit it freely: I'm a the kind of person that wants what I want, when I want it, and I want it yesterday. Guess that's referred to an instant gratification person. I can't watch the Food channel network for any length of time because I see a cake. I want a cake. I get a cake. I eat a cake.

Boom.

Translating that to exercise goals is clearly evident: I remember what a pain-free knee feels like. I want a less painful knee. I exercise to reduce pain in my knee. My knee feels less painful after exercising.

Boom. I think that's clearly an example of "....immediate rewards that enhance daily life..."

It really is that simple for me. But I keep my leg weights in a basket next to my recliner in case I forget how much I like having less pain in my knee.

NSAIDS: Proceed With Caution Says Cleveland Clinic

Vintage advertisement for acetylsalicylic acid - also known as aspirin - found on wikipedia here

The Cleveland Clinic recently tweeted a link to this important information for users of NSAIDS:  

FDA Boosts Heart Attack, Stroke Warning for Pain Relievers 

Life-threatening side effects can occur early
By Heart & Vascular Team | 7/10/15 2:10 p.m. 

If you take more than the recommended dose of a non-aspirin pain reliever in the belief the medicine is harmless, there’s good reason now to pay close attention to the directions on the label. 

The Food and Drug Administration (FDA) on Thursday strengthened warning label requirements for nonsteroidal anti-inflammatory drugs (NSAIDs), which include pain relievers such as ibuprofen and naproxen. These drugs are sold under brand names such as Motrin®, Advil® and Aleve®. 

Some combination drugs that relieve various symptoms, such as multi-symptom cold medicine, also contain NSAIDs. 

While the revamped warnings still say that NSAIDS may increase the chance for heart attack or stroke, new language will say that these serious, life-threatening side effects can occur as early as the first few weeks of use. In addition, the risk of heart attack or stroke might increase if you take NSAIDs for a longer time, the FDA says. 

“There is no period of use shown to be without risk,” FDA spokeswoman Judy Racoosin, MD, MPH, said in a news release.........continue reading here. 

Beating the Heat

Whoa. It's a real scorcher this weekend. Time to sit somewhere cool.

Yeah. The trees and rhododendrons have overgrown my little greenhouse, but that's ok. 

Our yard isn't particularly big, but John's been masterful over the years at creating little nooks within it to provide shade and shelter from all those UV rays.. Which is especially appreciated this weekend.

Ahhh. I think it's time for a frosty adult beverage.

Doggie Discussion

Back when John and I were younger, keeping up with our three little kids, our jobs, and with John working on his graduate degree, it never would have occurred to us that someday we would be one of THOSE people that had time to indulge their dog. And talk to her as if she were a person. 

Yet here we are. 

I took these pictures of John and Lulu the other evening not paying much attention to their conversation. Wonder what they discussed? I can only guess. 

It probably went something like this: John - Lulu. Let's talk about your obsession with chasing the neighborhood squirrels, shall we? What a noisy barking doggie you are....

Lulu doesn't care. Hey! she says - there's another one! 

It's the little things that matter.

I wish schnauzers had innate gardening skills. 

I was sitting on my duff underneath one of our apple trees picking up fallen apples and pulling weeds yesterday when I heard the 'ding' of an incoming text message. So I took off my gardening gloves and dug my phone out of my bra.

Yes, I'm still storing it there. Don't judge me. Old habits die hard....

It was a simple message saying "Hey. How are you today?" from a friend that has just been given a diagnosis that could only be described as horrifying - progressive supranuclear palsy. This information is from the NIH:

Progressive supranuclear palsy (PSP) is a rare brain disorder that causes serious and progressive problems with control of gait and balance, along with complex eye movement and thinking problems. One of the classic signs of the disease is an inability to aim the eyes properly, which occurs because of lesions in the area of the brain that coordinates eye movements. Some individuals describe this effect as a blurring. Affected individuals often show alterations of mood and behavior, including depression and apathy as well as progressive mild dementia. 

The disorder's long name indicates that the disease begins slowly and continues to get worse (progressive), and causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supra nuclear). Continue reading here. 

Oh my gosh. This is so unfair, I thought back when I heard of her disease. She's only in her '50s. She has a family and friends that love and need her. And to be aware that one's cognition is going to slowly slip away seems so cruel.....

She's in the early stages of the disease and is understandably shocked and anxious. But she's also feeling isolated and lonely. "Nobody knows what to say to me. I understand why, I get that. My speech is weird and I sound like I have no emotion...But it means so much to me to keep in contact with people," she told me once. "Even though I have trouble saying things, I can type or text easily. I love getting email and texts." And after that phone call, I resolved to do my best to stay in touch.

I wish she didn't live a few thousand miles away.

So yesterday I sat in my garden and with dirty fingers replied to her text in an exchange during which we just chatted about our day's plans and sent silly photos of our dogs to each other. Just ordinary, friendly conversation.

I couldn't quit thinking about her as I shoved my phone back into my bra. I can't imagine what my response would be if it would have been me, instead of her, that was forced to face such a devastating disease. Yet it seemed that although it's impossible to compare our situations, still there was one thing that we had in common: that even though our lives have been changed by disease, we both still want to participate in life - not only those big life events, but more importantly the little day to day events.

I remembered back to an earlier conversation that I had with one of my relatives shortly after I became disabled due to autoimmune disease. She earnestly told me that she loved me and was concerned about me, "Because you look so sick! You just aren't the same person you were before this! I wish there was something I could do. Tell me what I can do for you!"

After I recovered from the shock of someone telling me you DO look sick instead of the skeptical but you DON'T look sick, I considered what she had asked of me. She really wanted some kind of list of things that she could do. But what I told her seemed to perplex her.

Of course it didn't help that we were having this conversation over some wine; she having had far more vino than I. (I love those kinds of conversations with her.) So I repeated my request:  I told her that I just wanted to know what was going on with her and her husband and her kids. I wanted to hear those little incidental things that happen in daily life. I told her that I wanted to know about her daughter's dance team meets, her son's college escapades, the cool new cookie recipe that she had found, and just stuff. Just little ordinary things.

So that's what I'm trying to do for my friend. I sent her pictures of the big nasty weeds living next to my hydrangea today and her reply told me that even though she couldn't convey the emotion in her speaking voice, she was able to text her laughter to me.

Made my day.

Ew. Glad these awful weeds make SOMEONE happy. Certainly not me. 

It Was a Good Day

My refrigerator freezer and blue ice packs are very good friends these days. 

It's an understatement to say that I find real joy in good days. You know what I mean - days during which symptoms seem to fade.

Yesterday was one of those days. I could tell the minute that I woke up, swung my feet out of bed and shuffled to the bathroom. And noticed....that I wasn't limping. Woo hoo! I threw on my bathrobe and tentatively made my way down the staircase, reveling in the fact that going down the steps only made a small twinge of pain in my knee and hip.

So I knew that one steroid injection into my knee wasn't going to cure my badly damaged joint; that this newfound flexibility was only temporary, but I resolved to enjoy it while it lasted and hopefully not jeopardize the truce that prednisone had created in my cranky knee.

Lulu and decided we'd ignored our walks near the lake for far too long, so we headed down to the park and took a leisurely stroll.

Bliss.

Funny how such a small outing followed by ice and rest can make one's day. Ahhh. Wonder what tomorrow will bring?

Attention Men With Sjogren's: Higher Incidence of Serious Ocular Manifestations

Image found on JAMA

Thanks to the Sjogren's Society Canada for tweeting the link to this study entitled 'Ocular Complications of Primary Sjogren's Syndrome in Men' published in the American Journal of Ophthalmology in their 2015 Jun 17 edition.

The retrospective cohort study concluded:

Men with primary SS have a higher frequency of serious ocular and systemic manifestations. Although primary Sjögren syndrome is typically considered a disease of middle-aged women, it may be underdiagnosed and consequentially more severe in men. Physicians should have a lower threshold to test for SS in men with dry eye.

I am glad to see more studies that focus (See what I did there? Sorry.) on the male Sjogen's population, which in my humble opinion deserves much more research along with the young men and women with Sjogren's especially after reading this commentary from Dr. Fredrick Vivino on the SSF blog Conquering Sjogren's:

Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s
Ask the Doctor: Diagnosing Men & Children with Sjogren’sPosted on Tue, Sep 30, 2014 

Is there any speculation as to what’s driving this big upswing in the diagnosis of men and children with Sjögren’s? 

My gut feeling is that it has to do with the improvements in awareness and medical and dental education in recent years. The Sjögren’s Syndrome Foundation (SSF) has spent years trying to train the physicians and nurse practitioners about how prevalent and serious the disease is. We finally have a celebrity who unfortunately was diagnosed with Sjögren’s and although nobody likes to see somebody become ill, it has done a lot to help the entire public realize how serious it is, particularly the idea that people look a lot better than they feel and that it may take years to diagnose it unless you take the symptoms seriously.  

I can tell you at the University of Pennsylvania, where I work, the oldest medical school in the United States, we only started giving our first Sjögren’s lecture to the first year medical students about four years ago. And that was only after years of me fighting with the curriculum committee to get it included in the rheumatology course for the first year students. So, we’ve made a lot of progress and I think that’s an example of the benefits of all this work. 

-Frederick B. Vivino, MD, MS, FAC

So gentlemen? Bear in mind this increased potential for serious eye disease.

More research. More awareness. These are our biggest allies in our fight to conquer Sjogren's syndrome. 

I Knee-d a New One

Guys. Have any of you had a knee replacement? Would you mind sharing your experiences if you have?

I've had a bum knee for awhile, and after X-rays and a steroid injection today, my doctor has suggested that I think about having replacement surgery. The plan is to give my knee brace some time, to gauge my response to the steroid injection, try another physical therapy session, and then if I'm not able to walk without serious pain, then she'll recommend seeing a surgeon.

So. Was it a good decision for you?

I'm thinking that this department needs snazzier band-aids. Like an assortment of these beauties found on The Off The Wagon Shop.

Gardening Garb

Fashion alert: When supervising yard work minions cherished assistants, color coordination of one's footwear with one's sun protective clothing is simply a must.

Son of a Gun! There's More Than One!

Terese's family threw the best rootin' tootin' TWIN baby boy shower that I've ever seen. There's always a party around here.

Saturday Smile

Courtesy of Facebook:

With a caption that went something along these lines:

Yeah, those innocent looking pink flamingos appear harmless until they strip a T Rex right down to his bones in five minutes flat. Let's be safe out there, people. 

FDA: Clean out your shoebox, Julia.

Oh, wow. I took this picture five years ago. Trusty old box....still hanging in there. 

I was plunking two weeks' worth of pills into my dose boxes the other day. After I finished and had made notes of which meds needed refilling then threw all of the containers into my beat up shoebox sturdy medication bottle storage box, I noticed about three bottles sitting in a corner of the box which contained drugs that I wasn't taking any more. I idly thought that I should figure out a way to dispose of them, then shoved the box into my pantry and forgot all about it.

Until I saw today's tweet from @MedlinePlus: Some unused or expired medicines can be flushed, others can be thrown away.  Learn more from the FDA: http://1.usa.gov/1DEnLho 

Oh, hey, I thought. Timely. Head over there to read it all, and be sure to explore the several useful links included in this article:

Disposal of Unused Medicines: What You Should Know

Topics on this page

• Overview
• List of Medicines Recommended for Disposal by Flushing
• Questions and Answers about Medication Disposal 
   

Overview

Medicines play an important role in treating many conditions and diseases and when they are no longer needed it is important to dispose of them properly to help reduce harm from accidental exposure or intentional misuse. Below, we list some options and special instructions for you to consider when disposing of expired, unwanted, or unused medicines. Continue reading here. 

I Did It

Found on Auntie SparkNotes. 

Gosh. My body never ceases to amaze me.

Wait. This is a weirdo thing to say even for me but hear me out. So, I know that I spend most of my time here whining about aches and pains and brain fog and dryness.....but. On occasion I am impressed with something that this old bod does RIGHT.

It's a small thing, and probably something to which I wouldn't have given a second thought a dozen or so years ago. But it's my tooth. Or rather -- where my tooth used to be; while it is waiting for ongoing dental work. A few weeks ago my lip and jaw was swollen, red, and very obviously infected. And it hurt like heck. I've been grumping around for what seems like forever, until this morning while I was brushing my teeth and realized that something had changed.

It was gone.

Not only the tooth - duh, Julia - but more importantly the swelling and pain. I had healed the abscess and infection, with an enormous amount of help from dentists and medications, of course, but still. My body healed itself.

How cool is that?

For now, I look like a kid that's lost her first tooth when I smile widely, but that's perfectly fine with me. In a few weeks, I'll receive a brand spankin' new artificial tooth to replace the one that was there and shortly afterwards? I'll betcha anything that I won't even remember that anything happened at all and that the conniption fit that I've been throwing will seem kind of silly.

I was wondering why the recovery from an abscess and tooth extraction seemed so miraculous. And after a bit of thought realized this: that so many of the changes caused by my autoimmune disease - IBS, peripheral neuropathy, restless leg, heat and sun intolerance, fatigue to name just a few - have been described to me as things that I'd have to deal with. To manage. But that these things would never truly be cured, or healed. Ah, but this latest challenge, even though minor, is one that is ALL BETTER. Gone. It's healed. Cured.

Oh, yeah. Tooth infection? ZIP. Julia? ONE. I have to take my victories no matter how small wherever I can find them.

.::Julia does unattractive but exuberant celebratory dance::.

Motivation

My knees are happier if I do range of motion exercises while using light weights, but here's a question:
Does exercise count if one is sitting outdoors in a hammock chair on a beautiful summer day?

I'm thinking yes. Yes, indeed.

Sarah Beth, RN: Disability, Struggle, and Vindication

Sarah Beth Cowherd, a young woman dealing with what she describes as 'an alphabet soup' of diagnosis -  Chronic inflammatory demylenating polyneuropathy (CIDP) and Autoimmune Autonomic Neuropathy (known as autoimmune ganglionopathy) - and author of the blog Sarah Beth, RN has written a powerful post in which she offers a realistic yet inspirational look at her road to diagnosis and receiving appropriate disability reimbursement. Does anything in her post sound familiar? I'll bet it does. Check it out:

In the bleak winter that is life with a chronic illness, it is hard to remember that there is, in fact, a spring. The snow begins to melt, and flowers do actually bloom.

Good things can actually happen in the midst of a struggle.

And I have known a great struggle over the past three and a half years. I became sick very suddenly just weeks before my twenty sixth birthday and went downhill fast.

I struggled with finding doctors who took me seriously and being misdiagnosed and prescribed the wrong drugs. I was told I was, “being highly over tested” and asked, “Did your boyfriend break up with you?”

I struggled for a year and half, a short time for most patients like me, to get a diagnosis. Once diagnosed, I’ve struggled through a treatment option that leaves me very sick for a week or more each month.

I’ve fought with my health insurance company to cover the expensive testing and treatment. Denials of coverage, appeals, phone calls, dead ends.

I’ve fought for two and a half years with the insurance company that held my Long Term Disability plan. They made mistakes and I paid the price—both monetarily and emotionally.

I fought for three years for social security disability. Medical records, appeals, paperwork, pleas to doctors to answer questions. Lawyers. Continue reading here.

Sjogren's in Wimbledon: Venus Williams

"Venus Williams 2011" by Edwin Martinez - Flickr: US Open 2011 Opening Day 153. Licensed under CC BY 2.0 via Wikimedia Commons 

One of my favorite Sjogren's celebrities is flying high these days. Venus Williams is playing against her sister Serena Williams for the Wimbledon quarter finals. Will you be watching? I will. Check it out:

LONDON (AP) — One five-time Wimbledon champion is guaranteed to reach the quarterfinals. Another is assured of elimination. 

That's what will happen Monday when Serena Williams plays older sister Venus Williams for the sixth time at the grass-court Grand Slam in southwest London.  

"They've been unbelievable for the sport. I've said that many times," said Roger Federer, a seven-time Wimbledon champion who will also be playing on Manic Monday. "Their head-to-heads, I don't know how much that has to do with it. I think it's more their individual play." 

Individually and together, the Williams sisters have become two of the greatest champions at the All England Club. They have each won five singles titles, and have teamed up to win five more in doubles. 

Against each other on the grass at Wimbledon, Serena leads 3-2, with all three of her wins coming in finals. Venus won one final, and also won a semifinal match against her younger sibling in 2000 — the first time they met on court at the tournament. 

Although Serena is still at the top of her game and going for a true Grand Slam this season, Venus has been struggling for the past few years and was diagnosed with an energy-sapping autoimmune disease in 2011, three years after her last Wimbledon title. It was the previous year, in 2010, when she last reached the quarterfinals at Wimbledon. 

But this year, Venus has been nearing her past high standards, winning all three of her matches in straight sets....continue reading here. 

Venus and Serena will face off today in the fourth round; center court; 5am Pacific time. No matter who wins, Venus deserves kudos for managing her disease in a way that allows her to do what she loves. Go get 'em, girl!

It Was a Blast

Fun times. This year to celebrate the Fourth of July, John and I and Terese and Greg just hung out on our deck, watched our neighborhood go wacko with fireworks, and drank tropical drinks festooned with flamingos.

Brilliant.

You'll have to ask Terese to explain the wooden lobster hanging in my chandelier.

Pass The Popcorn

Lulu, Frodo, and Skippy from a Fourth of July picnic a few years ago. 

Happy Independence Day to all you Yanks! So whatcha all doing to celebrate? Going to see a movie, perhaps? The New Jurassic Park movie, you say? Personally, I think this version is better.

I'm Glad it is Gone

Yesterday was interesting.

Y'all have been subjected to an abundance of whining and gross pictures of my problematic tooth and accompanying abscess for awhile now - sorry. But you (and I) should be relieved that it's resolved. Yup. A nice oral surgeon yanked it OUT Thursday.

Ah, but don't be feeling all complacent and making any assumptions that more gross tooth and gum pictures won't be forthcoming. There's lots of dental fun ahead, so stay tuned. Actually, there's a good probability that I'll be putting up all kinds of weirdo dental stuff while under the effects of pain pills..... I probably should have my blogging license suspended while I'm under the influence of narcotics for the next few days but that's not going to happen so brace yourselves.

So before my appointment yesterday, I had my nose buried in a most interesting book written by Cristin O’Keefe Aptowicz.

You can buy your very own copy of Dr. Mutter's Marvels - A true tale of intrigue and innovations and the dawn of modern medicine here. Here's the story description found on Amazon:

A mesmerizing biography of the brilliant and eccentric medical innovator who revolutionized American surgery and founded the country’s most famous museum of medical oddities

Imagine undergoing an operation without anesthesia performed by a surgeon who refuses to sterilize his tools—or even wash his hands. This was the world of medicine when Thomas Dent Mütter began his trailblazing career as a plastic surgeon in Philadelphia during the middle of the nineteenth century....continue reading here. 

I found it horrifying, gruesome, and totally disgusting.

Yes. It is an AWESOME book.

Terese and I had the good fortune to tour Dr. Mutter's museum awhile back - if you get the chance and aren't particularly squeamish, go. It too is pretty darned awesome.

But the timing of my choice to crack open this book could have been better seeing as shortly afterwards I was sitting in a medical practitioner's chair facing a potentially unpleasant procedure. When the assistants wheeled in and opened up a sterile procedure pack and began setting out the tools needed, I couldn't help but sit up and take a peek.

Whoa. Some of the instruments resembled pliers found in John's toolbox in the garage.

As they began to prepare me for the extraction I was counting my lucky stars that modern anesthesia and sterilization had been invented; as comforting as that was, it didn't prevent me from recalling some of the cringe-inducing descriptions of surgeries found in Ms. O'Keefe Aptowicz's book. But before I could work myself into full blown panic, the offending tooth was out of my mouth.

I felt enormously glad that this oral surgeon was so quick. And that he and I were both living in 2015.

So now I'm popping more antibiotics and pain pills and chomping on sterile gauze with an ice pack slapped against my cheek. I'll gleefully share all of the gruesome details as this experience progresses but even though drugged up, I do have my limits - so don't be expecting to see any pictures of my face.

Because that would be the most scary thing of all. Now it's time to count YOUR lucky stars.