Tuesday, June 30, 2015

More Sjogren's Awareness Online and In Print

Awhile back I was approached by folks from Media Planet Personal Health News wondering if I could write a brief article addressing my strategies for dealing with Sjogren's syndrome - specifically dry eye symptoms. I was happy to oblige. The piece appeared in newspaper print as part of an insert in the Canadian newspaper, The National Post; and also online seen on Media Planet Personal Health News found here.

Julia Oleinik
Retired Registered Nurse, 
Blogger, 
www.ReasonablyWell.net

I’m Julia Oleinik, I’m fifty-eight, and enjoy life with my family, friends, and one very poorly behaved schnauzer. I’m a retired RN, and I like to write, travel, and pretend to be a photographer.  

And incidentally - I have Sjögren’s Syndrome.

Not familiar with Sjögren’s? Sjögren’s Syndrome is a systemic autoimmune disease which may impact the entire body but most often first presents itself by destroying moisture producing cells found in the mouth and eyes. In my earliest cluster of Sjögren’s Syndrome symptoms included fatigue, enlarged parotid glands, dry mouth, and painful reddened dry eyes....continue reading here

I'm thinking that cropping out my bathroom closet doors on my head shot was a good idea.....

Monday, June 29, 2015

Early Seropositivity in Sjogren's Syndrome

Autoimmunity diagram found here

I've read in a variety of sources that many times the symptoms of Sjogren's syndrome can be present for years before the level of auto antibodies is detectable on a blood test. But I found the results of this study interesting in that it concluded:
...Autoantibodies are found up to 18-20 years before diagnosis of pSS, but we cannot exclude even earlier seropositivity, as most patients were positive in the earliest analysed sample.
Twenty years BEFORE.
Abstract
OBJECTIVE: Autoantibodies are highly characteristic of primary Sjögren's syndrome (pSS) and represent important tools to study its pathogenesis. Nonetheless, thus far no systematic investigations have assessed the presence of autoantibodies before diagnosis. We analysed how early and in which order these appear, how predictive they are for pSS and if they identify disease subsets.
You can read the complete abstract of this study published in the American College of Rheumatology's journal Arthritis & Rheumatology here.

Sunday, June 28, 2015

These Things Are Good To Know

If you smile at your Auntie Julia she'll give you another cupcake. 


 When you're at Uncle John's house, you can pick any color blueberry you want.


Blue frosting on your nose will make you very, very happy.


If a little boy offers you a blueberry, you gobble it up.


It's always easier to go berry picking if you carry the bucket on your head.

Saturday, June 27, 2015

There's lots of different kinds of medications.


Ok. I know. I know. I promised that today I'd deliver to y'all a pithy post just jam packed with serious autoimmune STUFF. But sorry, folks. Not gonna happen, at least not in the way that I had originally intended. But still I think I've included information in this post which is good for your health. Here's why:

So I was putzing slowly around my grocery store (after my docs gave me the approval to "do what you can and when it hurts, stop") in happy anticipation of my two great-nephews coming to visit. I was debating what sort of treats these two young gentlemen might like and thought a small package of mini cupcakes decorated with bright red white and blue sprinkles might be a good choice. After probably driving the bakery department staff bonkers because I unstacked all of the plastic containers to make certain that I got the VERY BEST box; and at the very moment I plopped the perfect pastries into my cart, I heard a loud and stern, "DON'T EAT THAT!" directly behind my head.

Whoa.

I whipped around indignantly; shocked - yes shocked - that anyone would make such a judgmental comment to a perfect stranger. I mean, yes, I was fully aware that I didn't need that fat and sugar as a person who obviously was hefting around some extra pounds, but what I eat is my business, and mine alone! I had my big old blabber mouth open and ready to fire some kind of cranky response something along the lines of WHAT THE HELL??! but fate or my guardian angel or the universe or whatever thankfully intervened before I could say anything.

Because after I was fully turned around, I saw a young dad frantically prying a bag of carrots out of his baby's mouth as she was enthusiastically gnawing plastic and carrots. The package was trashed. Shredded.

She was adorable. Brought back memories of when my son used to chomp on a chunk of cheese before I could pay for it at the store (Remember when blocks of cheese were sealed in red wax?) and I'd yank it out of his mouth and then he'd smile at me with waxy and cheesy little teeth and then I'd have to stop right in the checkout line and smooch his little cheeks right up one side and down the other.

Anyway.

When I realized what was actually happening, I told the dad, "I thought you were talking to ME!" after which I began to laugh, and the daddy began to chortle, and the mommy was giggling and best of all - the baby girl began to laugh from her toes right up to her eyeballs, in the way that only babies can. Before long every person within earshot of us in that crowded store was smiling.

It was awesome. I'm still grinning.

Now go out and make a baby belly laugh. Because THAT, people, is the best medicine there is.

Friday, June 26, 2015

Maybe a frosty adult beverage would be therapeutic.

Oh, hey. John, honey? You can find the recipe for these absolutely yummy looking drinks here. 

Life with autoimmune disease is really weirdo, isn't it? I mean......seriously.

I've been dealing with a major pain in my butt for the last month or so, specifically pain when I bear weight on my right leg which results in major discomfort in my right....um....cheek. And it's problematic enough to make me have to sit or lie down. I've seen Dr. Young Guy and now a physiatrist physician for it AND have had two MRIs.

And it's still somewhat a mystery.

Looks like there is still some reoccurrence of stenosis with one of my lumbar spine vertebrae which confuses me seeing as I had a full six month period of no symptoms whatsoever after my laminectomy to correct it. My MRI also showed something that could be a kind of "focal myositis" in the area over my sacrum. I'm waiting to hear the pain relieving plan that my physiatrist physician and my rheumatologist concoct as they put their heads together.

At any rate, I feels that I have to apologize to y'all for my recent posts. Without a doubt, they've been wimpy and rather lame. But it's hard to be creative when I'm feeling anxious and in pain. My doctors were sharing their speculations which included fractures to ripped muscles and everything in-between which honestly made me freak out a little bit; although I appreciated their honesty and don't mean to imply that I would rather they kept mum and left me impatiently twiddling my thumbs waiting for any information from them.

I now know that at least I don't have any kind of break in my pelvis, which is a huge relief, but the fact still remains that if I want to have manageable pain levels, I have to do my best couch potato imitation with an ice pack wedged under my butt. Ah, well.

I'm grateful that I have two experienced and intelligent physicians working with me to resolve this problem. It will be interesting to see what happens next. In the meantime, I will try my best to get these brain cells of mine out of the neutral gear.

I wonder what would spark a bit more activity in the old grey matter? Hmmm. This may call for a mango margarita. Ooooooo. I can see my brain is working harder already.

Thursday, June 25, 2015

Wow, Man........

So let me just say here that an MRI under the effects of Xanax is much easier than an MRI without Xanax. And that it probably would be best if I did not write a post under Xanax's effects. See ya'll tomorrow.

Zzzzzzzz...........

Wednesday, June 24, 2015

Sometimes We're Mysteries


Thanks to Melodie Weller, PhD (@MeloWeller) for tweeting the link to this very interesting article. Entitled 'The Rheumatologist as Detective' and published in The Rheumatologist, it provides a small look into the world of doctors who are just as baffled by some medical problems as their patients. Save this article for when you have time for a fairly lengthy read; but do read it by all means: 
In rheumatology, the diagnosis may be apparent as soon as I shake a patient’s hand or scan the face or extremities for clues. Some physical signs are pathognomonic, that is, specific for only one disease. Osteoarthritis spares the knuckles, but gradually enlarges the middle and distal joints of the fingers. A heliotrope rash—a faint purplish swelling around the eye—is specific for the immunologic muscle disease, dermatomyositis. The thickened skin of scleroderma, the facial rash of lupus, the destructive saddle nose deformity of granulomatosis with polyangiitis (GPA), are rare but specific signs of their respective diseases. 
If at first the diagnosis eludes me, a careful review of the history and a good physical exam with a dash of focused lab usually makes the obscure apparent. 
But when I still don’t know the diagnosis at my follow-up visit, sometimes I don’t know what’s wrong for months, even years. Sure, doctors take pride in their successes, but the mystery cases, the patients who remain unwell and undiagnosed even after a second opinion, are not uncommon. Or, as Ron Anderson, MD, a prominent Boston rheumatologist at the Brigham and Women’s Hospital, once confided to a startled group of medical students and residents during a case presentation, “That disease saw me long before I saw it.” Continue reading here

Tuesday, June 23, 2015

I Hate to Admit it.....But it's True

Maslow 3.0 by @morten on Twitter, here

Monday, June 22, 2015

John - One. Cherry Tree - Zip.

John is so funny. I asked him yesterday what he would like to do to celebrate Father's day already assuming that he'd be raking in the kids' presents and phone calls and cards.

Which he did. Daughter#1 sent STEAK. She knows her daddy well, doesn't she?

John decided that there was nothing he'd rather do on his special day than grab a shovel and a pick to do battle with his latest back yard nemesis: the dreaded cherry tree roots.

Um, OK dear. Whatever floats your boat, honey.

We took out a cherry tree from our back yard last year since the tree just wasn't producing many cherries and the tree didn't appear to be healthy. So John chopped it down while making George Washington puns, dug out the stump, and that was that.

We thought.

But even though the tree was sickly, the remaining underground roots apparently were extremely healthy because this year we ended up with a zillion baby cherry tree sprouts appearing right where we wanted to plant more blueberries. So John declared war on the pesky roots, and happily attacked them in his version of a relaxing Father's Day afternoon.


Wow. Get a load of the size of those roots!


I assumed my usual supervisory role.


I'm sure he couldn't have won the cherry tree root war without my help.

Sunday, June 21, 2015

Summer Reading

So. Whatcha all reading now that summer is here? I've got a whole stack of books on my bedside table, but here's a couple of the most intriguing:

Image and story synopsis found here

There were giants in the earth in those days; and also after that, when the sons of God came in unto the daughters of men, and they bore children to them. —Genesis 6:5

Sister Evangeline was just a girl when her father entrusted her to the Franciscan Sisters of Perpetual Adoration in upstate New York. Now, at twenty-three, her discovery of a 1943 letter from the famous philanthropist Abigail Rockefeller to the late mother superior of Saint Rose Convent plunges Evangeline into a secret history that stretches back a thousand years: an ancient conflict between the Society of Angelologists and the monstrously beautiful descendants of angels and humans, the Nephilim.

For the secrets these letters guard are desperately coveted by the once-powerful Nephilim, who aim to perpetuate war, subvert the good in humanity, and dominate mankind. Generations of angelologists have devoted their lives to stopping them, and their shared mission, which Evangeline has long been destined to join, reaches from her bucolic abbey on the Hudson to the apex of insular wealth in New York, to the Montparnasse cemetery in Paris and the mountains of Bulgaria.

Rich in history, full of mesmerizing characters, and wondrously conceived, Angelology blends biblical lore, the myth of Orpheus and the Miltonic visions of Paradise Lost into a riveting tale of ordinary people engaged in a battle that will determine the fate of the world.


Image and story synopsis found here on Amazon

When Members of Parliament are murdered crossing Westminster Bridge, Thomas and Charlotte Pit must sift through the many suspects to find the killer—before he strikes again

In the few minutes it takes to cross Westminster Bridge, Sir Lockwood Hamilton has his throat slit and is tied securely to the lamppost with his evening scarf. The killer then vanishes without being seen. Inspector Thomas Pitt thinks the motive might have been personal . . . or political. When a second Member of Parliament is murdered in the same way, politics appear to be the reason. Soon the suspect list includes anarchists and suffragettes. Public outrage mounts and fear grips London and Parliament after a third lamppost murder.

Deep in his end of the investigation, Pitt must rely on his wife, Charlotte, and Great-aunt Vespasia to explore the drawing rooms of the upper class for clues to the mystery. With burning social issues swirling around them, the three of them must solve the case before another MP falls victim to the Westminster cutthroat.

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