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.....
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.
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.
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.
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.
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.
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.
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.
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.
My right hip had just darned well NOT look like this. Just sayin'. Image found here.
Sometimes, instead of one big 'ol catastrophic things; it's a whole bunch of little things that when put all together make me downright cranky.
Ever feel that way?
I'm wearing a new knee brace which is only making my knee more sore at this point, and my weirdo knee is making my hip more irritated and achey. And it's too soon to get my hip injected so Dr. Young Guy referred me to another physician who ordered a bunch more imaging tests of my hips; one of which included a MRI which takes place in a big noisy TUBE which makes some people claustrophobic but of course I told them I WASN'T claustrophobic which meant that about halfway through the procedure I became claustrophobic but thankfully held it together long enough to finish the test.
Got all that?
I'll bet y'all are cranky after having to try to make sense of this post, aren't you?
I get the results of my MRI probably on Wednesday or so. One of the potential diagnosis is a sacral insufficiency fracture which to be honest, is the biggest reason of all for my crankiness. I find it hard to believe that I could be walking around for the past two weeks with a fractured sacrum, but I'm not the doctor, obviously. So what could cranky old me possibly know?
I'll keep y'all posted. After I take my grumpy self off to bed for a good night's sleep.
When asked for the web address of Reasonably Well, most people's eyes glaze over when I start telling them: http://reasonablywell-julia.blogspot.com
It's a mouthful.
So I've simplified things. Reasonably Well's new address is www.reasonablywell.net. Now. Isn't that better? And the beauty of it all is that my OLD address still works just dandy, too. So you may use either one and end up at the exact same place.
Recently, my husband and I took our first trip with baby to Florida. It was lots of work to prepare to get away and it took lots of convincing to get me to agree to fly with an infant, but I am glad that we did it. Overall it was a great trip, but there was one adventure that I just had to share. It took me a day to get settled and feel comfortable. We had gotten the baby into a new routine and now I was ready to relax. I decided to take my very first bath since the little one was born. I had picked out an actual grown up book; I couldn’t wait to read while she napped quietly. (This is a real luxury when you have a baby as I’ve quickly learned). Just as I was beginning to feel like I was on vacation…the fire alarm started going off in our hotel. A false alarm? Not with my luck. A loudspeaker quickly blared that we must evacuate the building. And where was I? I was sitting in the bathtub in a room on the 12th floor. My husband? He was downstairs on the beach.
So I found myself naked and alone with my precious daughter, hearing over a loud speaker that there was a fire. Continue reading here.
I know that I've had to respond quickly to a stressful situation, and after it's over, wondered where that burst of energy originated. Then crashed immediately after.
I'll bet you have too. Share your Super Sjoggie on Adrenaline stories!
Oh, man. I didn't get a wiener whistle either. I'll bet JOHN got a wiener whistle.
John and I were sitting in our recliners reminiscing about stuff last night while we watched really terrible old movies. We were scrolling through the movie channel schedule.
"Saw this.....don't like this one.....I remember going to see this one with my sisters when I was a little kid," mused John.
Aw. Honestly - I didn't get to see movies in a theater until I was old enough to go on dates. You were such a lucky duck kid. And we never ever had pizza, either. I'll bet you guys got pizza when you were little too.
"Yeah, well, Mom worked in a pizza place so she brought it home for us lots." He looked at me with some sympathy.
We never got to have Oscar Mayer bologna that came out of those round yellow plastic containers, either. I wanted to bring bologna sandwiches to school SO BAD.
"Well, hey Jul - I did take bologna sandwiches to school when I was a kid and I can tell you this was not a good thing."
He got up from his chair and planted a big old smooch right on me. "Poor little girl never got spoiled. Can I buy you a pizza to spoil you? Or something else to spoil you? Anything but bologna."
I should have smooched him back and asked for candy. But no - Julia can never quit blabbing especially when she's ahead.
Seriously. When will I learn?
......and we never got grocery store bread. No, Mom made it from scratch and we had to have stuff like steak and roast beef from our cattle instead of cold cuts. We never got eat store-bought anything because Mom made home made cakes and cookies and jam and.....um......fudge.....and.....
I trailed off when I noticed John; whose expression had turned from sympathy to skepticism to outright exasperation. He plopped back into his recliner and told me that I didn't seem so deprived after all.
Allright, all you schnauzer people. Listen up! Here's today's schedule of events. We have a lot to do so pay attention!
First item on the agenda: Find a conspicuous spot in the direct line of sight of your human and look cuddly and innocent. No one will be the wiser.
Second: Doggie toy calisthenics -- I want to see everyone really putting in some serious effort here.
Third: I know this is everyone's favorite: snack time.
Fourth: There's a quarter acre of grass in this yard and all of it needs doggie wiggles. So let's get on it, folks!
And finally: Keep the cardinal schnauzer rule first and foremost in your mind - BE VIGILANT ALWAYS.
I know I'm asking a lot of you, but I'm confident that we will all get through this together. So are we ready to begin? We're a team, yes? All right then, paws together and we break on Milk Bone. One-two-three-MILK-BONE, BREAK!!!
Check out this inspirational post from Kristen, authoress of the blog Sjoggie StAHMer:
Last year I found out that the 5K Color Run was coming to Hershey. The run promotes health and making fitness fun by "releasing" (read pelting) color at you. By the end of the race you are a virtual rainbow. I wanted to take part so badly. Then the fears kicked in. Can I walk the whole thing? Would my asthma give me issues after breathing in the colored powder? If I got the powder in my eyes would it cause issues for my Sjogrens?....... continue reading here.
Is she all colorful and awesome OR WHAT?
Way to go, girl! Sjoggies everywhere are applauding your courage and determination!
Mine was hanging around underneath my lower canine and incisors. Image found here.
You ever have one of those experiences when you could tell something was wrong with your body? But you just couldn't decide what exactly was going on?
Sure you have. And it's a pretty good guess that an experience somewhat like the one described began your journey with Sjogren's syndrome.
I had a non-Sjogren's version over the past few days. I knew something was not right in my jaw. I just couldn't decide what that thing was. My bottom teeth were sensitive to pressure and the area where my lip meets the bottom of my gums was hot and tender but everything looked ok. I wasn't running a temp and even though the teeth were sensitive, I couldn't narrow it down to just one tooth and it wasn't keeping me awake at night.
Until last night when it all went kaboom and my lip swelled, my sensitivity turned to authentic insomnia inducing pain, and I could see a reddened lump inside my mouth. All of which suddenly became to a peak around 11pm, of course.
So a big chunk of my time was spent today in a dentist's chair (Thank you, thank you dental office for being able to tell me to just come in as soon as possible and we'll get you all fixed up when I called at the crack of dawn.)
Several x-rays, a root canal, prescriptions for antibiotics and pain pills later, I'm incredibly thankful that the large abscess lurking under several of my teeth's roots is being aggressively treated.
I'm also thankful for my bed where I'm heading right now to catch up with an entire night's sleep deficit.
I've been trying to write a post today which addresses some frequent complication of Sjogren's syndrome that applies to my current situation........but I simply can't. I can't because I just finished listening to my dear friend tell me in exquisite detail about her son in law's agonizing battle with terminal cancer.
Sjogren's and autoimmune diseases are significant health challenges, this I know. But even though I currently have substantial disease activity, these things are chronic, not terminal. I just can't begin to compare them to someone who is is in excruciating pain and looking at the end of his life.
I was sharing my feelings about this with my friend Jennifer, who messaged this bit of very good wisdom:
".....Well I don't know if I agree with you there. First of all, I have this theory. If you were in a car accident and broke your leg, it would be true that it could have been worse, you could have been killed. You have your life...but you also still have a broken leg, and that still sucks. So the fact that worse things could be happening doesn't mean your current battle isn't real.
Secondly, I'd think this story only serves to reinforce why it's important to deal with things like hip and knee issues, because you want to juice as much out of life as you can, knowing how much you can lose. Ya know?
I don't think the big bad stuff makes the smaller stuff less important, I think it makes FIXING the smaller stuff MORE important."
She's right. She's also basically written today's post.
Guys. Y'all simply MUST watch this video of 'The Daily Show' via Digg. But here's a note of caution: Don't be drinking any kind of beverage because I can guarantee you'll be laughing so hard you'll make that lemonade squirt right out your nose.
I routinely have a major pain in my butt. Or, more accurately, my trochanteric bursitis flares more often than I'd like. It's pretty cranky lately and over the last week it's caused me to break out my cane again. The steroid bursa injections really help but I can only have those every three months and I'm not due for another any time soon. During my last visit with Dr. Young Guy, I asked why it seemed that I was having such a difficult time resolving this painful dumb stupid inconvenient THING. He told me that It was complicated.
Of course.
So it turns out I have osteoarthritis in my knee causing my right leg to appear "knock kneed" (also called a valgus knee deformity) like this:
My knee issues are stressing the connective tissue that connects my femur to my hip. Which has contributed to the ongoing issue I have with trochanteric bursitis.
Oh, brother.
To make things even more expensive complicated, Dr. YG suggested that the two year old orthotic inserts and my UGLY orthopedic shoes may be worn out which further puts the alignment of my foot, knee and hip out of whack.
It's all connected, as the awesome Animaniacs demonstrate:
Love those little critters. But I digress.
The point of my rambling is that yesterday I was fitted for a new piece of hardware which hopefully will reduce my pain: lateral unloader knee brace. This required me to don the dreaded paper shorts yet again while the specialist took measurements and scanned my leg to make an amazing - but startling - virtual 3D model from which my new brace will be made. I'll be getting a version of this one:
I chose a deep misty blue color. Oooooooooooo. My brand spanking new brace will arrive in two weeks. I'll keep y'all posted.
You are amazing people. Your eloquence in sharing your hard-won wisdom in dealing with our disease constantly inspires me. My "The Hard, Cold Reality" post prompted excellent comments. I've included excerpts of a few here, but head over to read all of the invaluable contributions to my post: . ....We go on, savor the sweetness, deal with the challenges and go walk the dog. It is what it is. ....the cold, hard reality DOES hurt. However, I'd rather know the truth and know what I'm up against. Pretending otherwise doesn't help my situation. Shoot me some straight talk. I appreciate it. Now...I think a donut or chocolate cake might be necessary for today. Or maybe both? :) .... Acceptance does not mean giving up or giving in. For me it has meant letting go of my idea of what used to be, and embracing who I am right now, today, this minute. For so many reasons, this disease has been my best teacher. I'm not always a willing student though and do need to be sent to the principal's office from time to time! Thankfully my parents have never been called in for a meeting. Yet! ....It's a daily workout for me to accept the increasing dysfunction of my body and not resist it. Because when I resist it all gets worse. ....My goal is to be grateful for each good day, the fact that lately they outweigh the bad is a bonus. Most days, Life Is Good.
John and I celebrate our 35th wedding anniversary on the seventh of this month.
Woo hoo!
We had planned to spend it out at the coast just watching the waves roll in which sounded fantastic until I started looking around at hotels with oceanfront rooms that allowed dogs AND fit our budget. If I would have thought to start searching a few weeks earlier, it would have been a snap, but only two weeks away during the summer months?
Er. Not a good idea. Drat. Suddenly our relaxing weekend started to sound problematic and very expensive which prompted a conversation that went something like this:
Me: Hey, honey? It's been a real pain finding a nice place for our anniversary.
John: Bummer. .::HONK:. Poor guy was dealing with a nasty sinus infection.
Me: And you're feeling crummy.
John: Sure am...
Me: Well. I have an idea.
John: .::Looks warily in my direction::.
I couldn't imagine why he would be skeptical of my ideas. Pfffft.
Me: So. What if we take the money that we had planned to spend on the weekend, and get that recliner that we've been talking about buying? Is that brilliant, or WHAT? And then we could go out to our favorite place for dinner on the seventh?
John: Hmm. Before I answer that, I need to know more about how much you THINK we would have been spending on the weekend.
I did some quick mental math, and told him. After which he broke into a smile and told me that yes, my idea was indeed brilliant.
The next morning, Terese and I hit the recliner shopping trail bright and early.
Terese is an expert recliner tester.
Yep. She and I picked a real winner. Just ask John.
Last night, after John unloaded the big cardboard box from the SUV and lugged the thing into the house, we both put our feet up in our recliners; me in my usual and John taking our anniversary recliner on a test drive.
A fine line, ladies and gentleman, its what stands between living with chronic illness and being alive with chronic illness. I've straddled it a few times, but I've figured out some of what on the other side and here's what I know:
1. You're not living with a chronic illness if you're hunting for the why full time.
Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else's hair that one time in second grade? There are an infinite list of possibilities as to why you could be sick. But after a while, and at least for a while, you've got to take a break from the endless hunt for answers and ask yourself, "How am I going to handle living with my disease today?"
There has to be breaks, balance, within the search for answers. You can't just live going from doctor to doctor. You have to even out the space in between with friends and work and family.
Because you can't hunt, you can't search, you can't question, and you can't get an answer for any of the whys in life until you've mastered feeding yourself, moving yourself, balancing your work, relationships and symptoms at the same time. I mean, you can throw all of those things out the window and just hunt while you lay in bed dying.
A Body Out of Balance by Nancy Carteron and Ruth Fremes
A Delicate Balance - Living Successfully With Chronic Illness by Susan Milstrey Wells
In Defense of Food by Michael Pollan
Peripheral Neuropathy - When The Numbness, Weakness, and Pain Won't Stop by Norman Latov, MD, PhD
The Autoimmune Connection by Rita Baron-Faust and Jill P. Buyon, M.D.
The Balance Within - The Science Connecting Health and Emotions by Esther M. Sternberg, M.D.
The New Sjogren's Syndrome Handbook (Sjogren's Syndrome Foundation) by Daniel J. Wallace
The Sjogren's Syndrome Survival Guide by Terri P. Rumph Ph.D, and Katherine Morland Hammitt
You Don't Look Sick - Living Well with Invisible Chronic Illness by Joy H. Selak and Steven S. Overman, MD, MPH
Information on this blog is not intended as medical advice. Always check with your healthcare provider before taking any medications, vitamins, or supplements; before beginning exercise programs, or making changes in your health care practices.
