Thursday, January 31, 2013

It's Making Sense Now

Before Dr. Young Guy injected my knee earlier in the week, he asked if I had a chance to see my knee x-rays. I said that I hadn't, so he pulled the computer screen closer to me, clicked on a few places, and bingo! There it was. My right knee. Larger than life. In crisp black and white.

As he pointed out various landmarks on the x-ray, the pain and limited mobility of my knee began to make more sense. I could see why certain movements of the joint are really difficult. I'm a visual learner, I guess. Once I see something in a picture or diagram, I have a much easier time remembering and understanding it.

Here's how Dr. YG explained my cranky knee to me. Although, since I don't have a copy of my x-rays, y'all will have to imagine everything.

Oh, wait. Here's an idea! I'll DRAW a picture of a normal knee and my knee!  .::scribble scribble scribble erase erase erase scribble scribble::.

So here's what a normal knee joint should (roughly, very very roughly) look like.

Meh. Don't look too closely at my rendering especially of the femur lateral condyle and epicondyle. I never was any good at drawing those....

See the space indicated by the arrow? That's normal.

This is what my knee looks like:

...And don't even get me started on how hard it is to replicate an intercondyloid eminence. 

As you can tell by the exquisite detail on these drawings (pffffttt), the space between the femur and the tibia is much smaller than it should be, and as the arrow indicates, in places there is NO space between the bones. Which is why he injected Synvisc. I asked Dr. Young Guy what he thought about the success rate of these type of injections, and he shrugged.

"For some people, they work amazingly well. Others, not so much. And for a few, they have some kind of a reaction to the gel. So we'll have to see how this works for you."

He advised me to take it easy on that knee for the next several days, ice the injection site, and avoid the movements that cause me the greatest pain. Which would be stairs, in my case. Going down stairs. OR any kind of twisting motion of my knee.

I can do that. I have already noticed that nasty aching pain at night has disappeared. Yessssssss!

I have acquired a new sense of respect for those that get around with long-term bone issues after this little experience, I really have. Since Greg and I formed the B.O.B. club (Bone On Bone) our membership has grown exponentially. And everyone that joins says basically the same thing:

So how come YOU'RE the president? I've got it much worse than you do....(and actually they're right).

Ah. Valid point. However. It was MY IDEA. And I NAMED this club. So there.

Madame B.O.B. President acknowledges freely that she has far less serious issues than many folks do. However, since Madame President is also Queen Whiney-Butt, this attribute takes precedence over length of bone on bone experience.

I think we need matching jackets. Or bowling shirts.

Wednesday, January 30, 2013

To Blab or Not to Blab


This is my facebook profile picture. Several people have told me that they think it's pretty weird but I like it because it doesn't show any of my wrinkles or triple chins.

Well, now. I didn't ask this question of Sister Mary Martha, but I think I probably should have:
I tend to run my mouth and say more than I need to.....who is the patron Saint of those who talk too much?
Talking too much is a relative situation, is it not? If you're at Aunt Tillie's funeral and you just can't stop commenting on the mourning garb or lack thereof, you talk too much. If other people can't get a word in edgewise, you talk too much. If you're Chris Matthews, you talk too much.
But some people talk a lot and it's a very good thing. With that in mind, I offer two patron saints for you, with the thought that if you have a tendency to run your mouth, you could at least not run it on empty.....
.........So blab away, my dear. And remember the words of St. Francis "Preach the Gospel at all times and when necessary, use words."
Oh, my, Sister. Girl. You don't want to tell someone like ME to "blab away"......!

Seriously.

You can read her suggestions for blabbermouth patron saints here.

Tuesday, January 29, 2013

Incredible Icy-ness

After I had six -- SIX, count 'em -- milliliters of Synvisc-One AKA hylan G-F 20 injected into my cranky right knee today (more about that later...) I slapped my very favorite ice pack over the injection site.

I brought it from home because those wimpy squeeze-till-you-hear-a-pop-and-the-liquid-turns-cold-for-three-minutes chemical ice packs they give you at Dr. Young Guy's office are pretty useless.

(To continue to experience the full effect of this post, push the play button on the YouTube video of Copland's Fanfare for the Common Man NOW).


Wait for it.....wait for the trumpets....yeahhhhhhhh.


Allow me to introduce you to my previously unsung frosty hero: The ice pack that's been frozen and refrozen and frozen yet again and still packs an icy cold punch of relief. It's not a compress.....it's not a poultice.....it's not a balm.........NO! It's.........SUPER PEA BAG!

Yes. This small bag filled with 12 ounces of cold pea goodness has comfort superpowers.

It conforms to my knee shape perfectly.

It cools divinely.

It thaws evenly....... and then refreezes quickly.

It has survived countless smashings against the kitchen countertop to break apart frozen solid pea clusters.

I don't know how this bag has stayed intact after it's been dragged around everywhere in this house, in Goldie, and now into Dr. Young Guy's clinic without the white plastic springing a hole, but it has kept on keeping on.

I chose Super Pea Bag's theme music carefully, having considered the opening theme from 2001: A Space Odyssey but rejecting it since SPB is a meek white polymer container arising from humble WalMart origins.....thus the Copland Common Man.

Truly. My. Hero.

What? What's that, you say?

AAACK! EAT SUPER PEA BAG'S INNARDS??

People. Y'all are seriously deranged. Tsk.

Monday, January 28, 2013

Can Sjogren's Syndrome Cause Kidney Disease?

I received a letter from a reader who recently discovered that a specific test for her kidney function: the GFR - glomerular filtration rate - was abnormal and that her kidneys were only functioning at 50% of their capabilities. She wanted to know if Sjogren's syndrome could be the cause, and if so, what other sjoggies would have to say about their experience with kidney failure and Sjogren's syndrome.

Excellent questions.

I wrote a post back in 2008 in which I briefly discussed Sjogren's syndrome and kidney (also known as renal) disease in generalities; however this question requires a more thorough answer. As always, I feel more comfortable describing an organ's abnormalities only after we establish some understanding of normalcy. The following sections of simplified information about normal kidney structure and function were found here: (bolding mine).

The kidneys are bean-shaped organs, each about the size of a fist. They are located near the middle of the back, just below the rib cage, one on each side of the spine. The kidneys are sophisticated reprocessing machines. Every day, a person's kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. The wastes and extra water become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.
Wastes in the blood come from the normal breakdown of active tissues, such as muscles, and from food. The body uses food for energy and self-repairs. After the body has taken what it needs from food, wastes are sent to the blood. If the kidneys did not remove them, these wastes would build up in the blood and damage the body.
The actual removal of wastes occurs in tiny units inside the kidneys called nephrons. Each kidney has about a million nephrons. In the nephron, a glomerulus-which is a tiny blood vessel, or capillary-intertwines with a tiny urine-collecting tube called a tubule. The glomerulus acts as a filtering unit, or sieve, and keeps normal proteins and cells in the bloodstream, allowing extra fluid and wastes to pass through. A complicated chemical exchange takes place, as waste materials and water leave the blood and enter the urinary system.
.....In addition to removing wastes, the kidneys release three important hormones:
  • erythropoietin, or EPO, which stimulates the bone marrow to make red blood cells
  • renin, which regulates blood pressure
  • calcitriol, the active form of vitamin D, which helps maintain calcium for bones and for normal chemical balance in the body   

For some, Sjogren's syndrome can and does indeed affect the kidneys, however Sjs is not the most frequent cause of kidney failure. The most common causes of kidney disease are diabetes and high blood pressure. People with a family history of any kind of kidney problem are also at risk for kidney disease.

When Sjogren's syndrome related kidney disease does occur, the reporting of incidence varies wildly, read this:
"Renal involvement is reported to occur in 18.4%5 to 67%6 of patients with primary Sjögren's syndrome. This considerable variation is probably due to the different classification criteria used in the studies, as well as the selection of the patients."
SS-related kidney disease usually takes one of three forms:

  • Damage to the tubule sections of the nephron known as tubular interstitial nephritis, a kidney disorder in which the spaces between the kidney tubules become swollen (inflamed) and damaged. A kidney biopsy of TIN would reveal lymphocytes infiltrating normal surrounding kidney tissue. 
  • Renal tubular acidosis, in which the kidneys don't properly remove acids in the urine, leaving too much acid in the blood and causing dangerous electrolyte imbalances in the blood. 
  • Less frequently, damage to the glomerulus also can occur called glomerular disease which causes a loss of blood and protein in the urine and decreases the ability of the kidney to filter waste products. 

To diagnose and monitor kidney disease, several laboratory tests are routinely ordered. They may include a urinalysis and other urine tests including:


  • Creatinine clearance
  • Examination of the urine under a microscope
  • Urine for total protein
  • Uric acid in the urine
  • Urine concentration test
  • Urine creatinine
  • Urine protein
  • Urine RBC
  • Urine specific gravity
  • Urine osmolality
  • Acid loading test (pH)
  • Urine calcium
  • Urine citric acid
  • Urine potassium level

Kidney disease may also cause abnormal results on the following blood tests:

  • Albumin
  • Anti-glomerular basement membrane antibody test
  • Anti-neutrophil cytoplasmic antibodies (ANCAs)
  • Anti-nuclear antibodies
  • BUN and creatinine
  • Complement levels
  • Blood potassium


Several other diagnostic tests may be ordered, such as x-rays, abdominal CT scans, IVP (intravenous pyelogram), and kidney biopsy.

Treatment of these and other kidney problems include the use of steroids, immunosuppressive agents, and B cell depletion therapy such as rituximab.

You can read an excellent recent study about SS-related renal disease which goes into much more specific detail here, the conclusion of which includes this:
"...Given the effect of progressive renal disease in patients with pSS, especially those who progress to severe renal impairment before diagnosis, greater emphasis should be placed on screening for renal involvement with a low threshold for early nephrology referral and KB."
Well. That's my very, very, long answer to the question of whether Sjogren's syndrome can affect the renal system. The short answer?

Yes. Sjogren's syndrome can cause disease in the kidneys.

But remember: It is not the most common cause of kidney failure. Also know that our kidneys are tough and efficient organs. Damage to some of the kidney does not necessarily translate to overall kidney failure. Read this found here:

Your health care team may talk about the work your kidneys do as renal function. If you have two healthy kidneys, you have 100 percent of your renal function. This is more renal function than you really need. Some people are born with only one kidney, and these people are able to lead normal, healthy lives. Many people donate a kidney for transplantation to a family member or friend. Small declines in renal function do not cause a problem. In fact, you can be healthy with 50 percent of your renal function if it remains stable.
The reader is wise to continue this discussion with a nephrologist AND her rheumatologist.

Have you had issues with Sjogren's related kidney disease?

Sunday, January 27, 2013

This Meeting is Called to Order.....

I had the orange creamsicle cake. And yes, it's half gone. 

I'm forming a new club. Wanna join? It's called the B.O.B. (Bone-on-Bone) club. 

I'm the president, by the way. 

My club has two members so far: Terese's husband Greg, and me. Greg is a reluctant member because he thinks that since he has TWO knee joints that are bone-on-bone and since he's been dealing with osteoarthritis far longer than I have, he should be president. I offered him the vice-presidency but he balked at that. 

I can't imagine why. But he eventually acquiesced. 

We're debating whether or not our friend Susan qualifies as a potential member since her osteo is in her shoulder AND she doesn't know if her x rays actually showed bone on bone. 

We may need to develop an admission/membership committee. I think Greg should handle that as well. Don't y'all agree? He could manage the extra responsibilities since a vice-president rarely has really important duties, unlike those of the PRESIDENT. Um.....I'm not sure what those duties would be but I'm certain that they would have to be much more important than a vice president's....

I wonder if we should charge dues. Oh, and by-laws. Hm. We definitely need some by-laws since I have a suspicion that our current club requires serious oversight.  

We convened our first meeting last night and allowed John and Terese to be honorary attendees over desserts at Rose's Deli. Membership DOES have it's benefits....

Saturday, January 26, 2013

It's Not Always Due to Sjogren's Syndrome

Image of common, mundane, ordinary, osteoarthritis knee found here

I've been having issues with my right knee lately. It HURTS, to put it simply. And, I've wah wah wah-ed about it before, so I won't go into the boring details.

But.

The point I want to make about it all is that I realized a few things as a result of this experience.

First: I'm thinking the Middle-Of-The-Night-Corn-Meal-Mush incident was an excellent example of one of my most frequently used coping mechanisms (which is not to say that it's the most effective, btw) when I'm uncomfortable be it physical or emotional or whatever in cause. A major player in this coping mechanism is food that contains all those things that are not good for me: sugar, fat, salt....  yeah. I have been wondering why my sweet tooth has been driving me crazy over the past few weeks and it finally occurred to me that I might be seeking for ways to deal with my knee pain that don't involve an ice pack made of frozen peas. Especially since NSAIDS, ice, elevation, and rest really isn't making this all go away.

I'm not sure how to handle this little flash of inspiration, but perhaps it will at least slow down the parade of junk food entering my body.

One can only hope.

So the second realization came about when my x rays and lab pathologies showed that my knee was down to owie bone-on-bone due to common garden - variety osteoarthritis.  It's swollen a bit, it hurts like heck, but it's just an old worn-out cranky knee. I can't blame a bit of this discomfort on Sjogren's syndrome, and that's an interesting concept, isn't it?

I'm so accustomed to attributing anything and everything including hangnails and dandruff to Sjs that the idea that my body would develop anything that wasn't autoimmune related is totally foreign.

I mean, I can't move furniture because I HAVE SJOGREN'S SYNDROME.

I wouldn't dream of mowing the lawn because I HAVE SJOGREN'S SYNDROME.

There's probably some really good reasons why I shouldn't do the dishes and laundry because I HAVE SJOGREN'S SYNDROME. I can't think of them at the moment, although I have used that rationale before, I'm sure.

No, my knee is just worn out and cranky like the rest of me. And, a cranky knee like mine is pretty common.

Common?!

Sniff. I'm used to dealing more with exclusive illnesses here. Gee. I'm certainly NOT used to describing myself as common. Tsk. There must be something unique about my particular knee. There must be. I simply don't see myself mixing with the osteoarthritis commoners in the clinic waiting room. Sigh. But, if I must, I must...

I'm meeting with Dr. Young Guy on Monday to discuss some treatment options for my knee. It will be interesting to have a non-autoimmune discussion with him.

I wonder if since this isn't autoimmune in nature; and won't be influenced by my rituximab infusions.........if this office visit warrants a mouse-themed treat?

Hmmm.

Friday, January 25, 2013

Does Seronegativity Equate Increased Pain Severity?


I was glad to see that my earlier post discussing Sjogren's syndrome and peripheral neuropathy generated a lively conversation here in the comments, on Twitter, and in the email responses that I received.

I touched a nerve, it seems. Har har.....

(Pain really isn't a funny topic. Sorry about that. Bad Julia. BAD Julia. Limping around here with chronic pain issues of my own may have impaired my judgment.)

Pain caused by damage or disease to peripheral nerves is a serious issue for a great deal of sjoggies. In view of the recent activity regarding this topic, the conclusions of another study caught my attention. What I found of particular interest is that the authors of this study chose to examine the relationship between neuropathic pain and serum markers for Sjogren's syndrome.

It was titled "Pain Severity and Neuropathic Pain symptoms in primary Sjogren's syndrome: A comparison study of seropositive and seronegative Sjogren's syndrome" and authored by Barbara M. Segal MD, Brian Pogatchnik BS, Lisa Henn MS, Kyle Rudser PhD, Kathy Moser Sivils PhD
and found here.
Conclusion:
Chronic pain is pervasive in both seropositive and seronegative pSS patients, while pain severity and functional impairment is greater in seronegative patients. Neuropathic pain is equally prevalent and is the predominant pain phenotype in patients with moderate to severe pain. Accurate assessment of pain phenotypes is needed for more effective management of chronic pain in pSS. The focus of future research should be to standardize assessment of pain and to identify the factors contributing to more severe pain in seronegative patients.
In other words, the authors of this study feel that primary Sjogren's syndrome patients who do NOT have blood auto-antibody markers such as SSA-Ro/SSB-La experience neuropathic pain in equal prevalence to seropositive sjoggies, but the intensity of the pain is perceived as higher and the the effects more limiting than those who are seropositive.

Interesting.

Thursday, January 24, 2013

It's Not Working, Dorothy.....

"Writing is the art of applying the ass to the seat."  --Dorothy Parker.

Well, I'm here to tell you, Dorothy. My ass is firmly planted in my computer chair and nothing. But nothing. Is happening, writing-wise.

I've been plenty busy; but I haven't been writing, least of all artfully writing.  I've ordered a book about Cleopatra, browsed wooden puzzle organizers, read about everyone's lives in the whole facebook world, played and lost and cussed at Candy Crush, wondered how the semi on I-84 crashed and spilled it's tank of raspberry puree and what became of the puree since it happened just across the river from me, and........ y'all get the idea.

I think if I want anything productive to happen at all today, actually I'd better get my hindquarters OUT of my seat. See you tomorrow.

Wednesday, January 23, 2013

Mushed

This has never happened to me before. But last night's incident was so strange that, as usual, I felt compelled to blab to y'all about it:

Last night as John and I went to sleep, I could tell it was going to be one of those nights during which we spend a great deal of time telling each other to "turn over on your side because you're snoring." I've found that the phrase is more effective if it's followed quickly by a pillow whap. Maggie and Lulu get cranky on nights like these because this means that with each change of position by John or myself, they're required to rearrange all the blankets and turn around in circles to re-do their sleeping spots on the bed. Which wakes me up because Maggie needs to vigorously scratch at the comforter before she begins the whole routine.

On nights like these, nobody in our house gets a good night's sleep. Which is kind of silly when one considers that this is a four bedroom house and all four occupants are jammed into one bed. But that's the way we like it, so......ah well.

But last night at two AM, after being told to "turn over onto your side because you're SNORING," and "scratch scratch scratch SCRATCH SCRATCH" and Lulu deciding that her new sleeping spot was going to be directly under my chin facing my feet which meant that her rear end was way too close for comfort in my opinion.......where was I going with this.... oh, righto -- I slid out of bed and decided to take advantage of one of the other very comfortable beds in our house just one bedroom down.

Which I did. Ahhhhhhh. I fell asleep immediately on my back, probably snoring so loudly that the shingles were shaking but I didn't care. My peaceful but probably noisy slumber was disturbed just one hour later when I awoke to the strangest sensation: I was unbearably hungry. I was craving something.......

Yeah. In the middle of the night I woke up craving..............a big bowl of steaming hot corn meal mush. What the heck?!

So me waking up during the night feeling a bit peckish isn't all that unusual, but here's the weird thing: I've NEVER HAD A BOWL OF CORN MEAL MUSH IN MY LIFE.

Never. Not once.

But the craving was so persistent that after a few minutes I tiptoed downstairs and grabbed the box of cornmeal that I had purchased the day before because I thought some muffins would be nice, and John likes the corn meal kind.

I looked on the package, and panicked when I couldn't immediately see a mush recipe, but whew -- there it was: just a little paragraph with a simple recipe that served four.

It was three AM. I couldn't do the math, so I grabbed a kettle and cooked up four servings of corn meal mush. I have no clue if what I made actually was mush, but I followed the directions and about ten minutes later was seated at the kitchen table in my jammies eating a big bowl of yellow stuff which was spread with just a little butter, drizzled with honey, and thinned a bit with some milk poured over the top of it all.

Oh. My. Gosh.

It was wonderful. It was delightful. It was delicious. It was fabulous and comforting beyond belief. Where has this stuff been all of my life?

AND WHY DID I WAKE UP IN THE MIDDLE OF THE NIGHT CRAVING SOME?

I woke up this morning and vaguely recalled cooking something delicious during the night....gosh, must have been yet another weirdo Plaquenil dream, I thought.....then came downstairs and found this:


Explanations please.

Tuesday, January 22, 2013

Treatment of Peripheral Neuropathy in Sjogren's Syndrome

Image found here

Reader Nancy asked this excellent question recently:
..."As I was reading through your earlier blogs I came across your posting about your experience with peripheral neuropathy.  Though many of us experience many additional autoimmune effects, the problem of peripheral neuropathy can be one of the worst.  The constant search for ways to deal with the daily pain that never goes away can sometimes be overwhelming. I'm sure many of us would love to hear how you have developed coping strategies to deal with the non-stop pain of daily life with this symptom - anything from shoes to medications would be of interest."
Peripheral neuropathy and it's uncomfortable symptoms are caused by damage to the nerves that carry information to and from the brain and spinal cord. PN has several specific causes and can cause hundreds of symptoms, as described in this excellent neuropathy fact sheet from NINDS found here.
More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend on the type of nerves -- motor, sensory, or autonomic -- that are damaged.  Some people may experience temporary numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. Peripheral neuropathy may be either inherited or acquired. Causes of acquired peripheral neuropathy include physical injury (trauma) to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism, and vascular and metabolic disorders. Acquired peripheral neuropathies are caused by systemic disease, trauma from external agents, or infections or autoimmune disorders affecting nerve tissue. Inherited forms of peripheral neuropathy are caused by inborn mistakes in the genetic code or by new genetic mutations. (bolding mine)
Sjogren's syndrome related peripheral neuropathy is well-documented, unfortunately. Read this patient fact sheet from the Sjogren's Syndrome Foundation authored by Dr. Julius Birnbaum:

There are many different types of neuropathies in Sjogren's syndrome. These neuropathies can have different causes and may require different diagnostic techniques and different therapeutic strategies. Unlike other autoimmune disorders, in which the neuropathies predominantly cause weakness, the neuropathies in Sjogren's primarily affects sensation and also can cause severe pain. recognition of unique patterns and causes of neuropathies in Sjogren's is important in arriving at appropriate therapies. 
  • Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjogren's do not come on suddenly, reduction of neuropathic pain can take a while. 
  • Initial and predominant neuropathies in Sjogren's can occur anywhere - in the feet, thighs, hands, arms, torso and/or face.
  • Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach. 
  • While the class of tricyclic anti-depressants (TCAs) often constitute and first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjogren's patients.
  • Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests. 
  • Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of 3 millimeters and not requiring any stitches), can help in the diagnosis. 
  • A relatively rare neuropathy can cause significant weakness in Sjogren's patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called "mononeuritis multiplex" occurs because the blood flow through vessels which nourishes nerves is suddenly compromised.
  • In general, immunosuppresive medications are almost always warranted to treat "mononeuritis multiplex" neuropathy. In contrast, the rol of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.
  • Sjogren's patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur. 
  • Neuropathic pain can be alleviated and assuaged, although there may initially be a 'trial-and-error" process with different and perhaps multiple agents. 

As in the the treatment of all causes of PN, good treatment of Sjogren's related peripheral neuropathy addresses first the optimization of reducing the autoimmune activity of the disease, and secondly focuses on the specific location and severity of symptoms.

For me, PN probably accounts for the pain and burning that I experience in my feet which is more severe at night. Dr. Young Guy and I have discussed this, and since I also experience restless leg syndrome, I am taking medication to ease some of these symptoms. I take Klonopin, having tried and not tolerated other more commonly used drugs for restless leg syndrome.

I also have realized that good socks and excellent shoes are vital to decreasing my foot pain. In our climate here in the Pacific Northwest, good wool socks such as Smartwool brand are particularly comfortable for me. In warmer months, cushiony pure cotton feels best. And, I've reluctantly realized that I need to wear shoes Every. Minute. Of. Every. Day. Here's advice offered by another Sjogren's syndrome patient found in the Sjogren's Self Help Booklet courtesy of the Sjogren's Syndrome Foundation:

...The biggest change I made was my shoes. I found that with shoes that accommodated thick fluffy socks I felt a lot less pain. My personal favourite is SAS® brand, Free Time with Thorlos® walking socks. Wearing socks all the time was really a new concept for me too. I thought wearing even 100% cotton light-weight socks at night would make my feet hotter, but they didn’t and even made me more comfortable. Some people get relief from wearing tight socks. Mild support knee highs might be worth a try and I found these the most helpful.
If my feet are really hurting, I first try soaking them for a while in really cool water. I then try to talk my husband into massaging them for a few minutes before I go to bed since this seems to be my worst time of day. Neutrogena® Foot Cream works well for massage and is really good for dry skin too. The massage often gives me several hours of relief. If anyone needs convincing, just read what the Mayo Clinic says, “A massage helps improve circulation, stimulates nerves and may temporarily relieve pain.”

Treatment suggestion from the  Mayo Clinic website include:

Pain Relievers:

  • Mild symptoms may be relieved by over-the-counter pain medications. For more-severe symptoms, your doctor may recommend prescription painkillers. Drugs containing opiates, such as codeine, can lead to dependence, constipation or sedation, so these drugs are generally prescribed only when other treatments fail.
  • Anti-seizure medications. Drugs such as gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) were originally developed to treat epilepsy. However, doctors often also prescribe them for nerve pain. Side effects may include drowsiness and dizziness.
  • Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation this cream creates. Generally, you have to get used to the heat before you can experience pain relief. Doctors may suggest you use this cream with other treatments.
  • Lidocaine patch. This patch contains the topical anesthetic lidocaine. You apply it to the area where your pain is most severe, and you can use up to four patches a day to relieve pain. This treatment has almost no side effects except, for some people, a rash at the site of the patch.
  • Antidepressants. Tricyclic antidepressant medications, such as amitriptyline and nortriptyline (Aventyl, Pamelor), were originally developed to treat depression. However, they have been found to help relieve pain by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta) also has proved effective for peripheral neuropathy caused by diabetes. Side effects may include nausea, drowsiness, dizziness, decreased appetite and constipation.

Therapies:
Transcutaneous electrical nerve stimulation (TENS) may help to relieve symptoms. In this therapy, adhesive electrodes are placed on the skin, and a gentle electric current is delivered through the electrodes at varying frequencies. TENS has to be applied regularly.
For a few PN sufferers, the pain and burning can become so severe that it interferes with their ability to function in spite of commonly used treatments. In these instances, some rheumatologist prescribe the use of IVIg: intravenous immunoglobulin therapy:

What is IVIG?IVIG, also called gamma globulin or antibodies, is a highly purified blood product preparation that is derived from large pools of plasma donors. Plasma from approximately 1,000 to 10,000 persons is present in each unit or “lot” of IVIG. While this is a blood product, IVIG available in the United States, is purified and carefully screened to be free of all known transmissible diseases, including HIV, hepatitis, malaria, syphilis and many, many others. This medication is used to treat a variety of neurological and neuromuscular autoimmune disorders that affect the central nervous system, peripheral nerves, neuromuscular junction and muscles.
The Benefits of IVIG:The underlying problem in all autoimmune diseases is often similar. One part of your immune system has decided to attack part of your body, instead of defending your body from bacteria and viruses. While the cause of this damage is unknown, IVIG contains antibodies which are believed to block this attack.

IVIg use specifically for neuropathy in Sjogren's syndrome was the topic of a timely recent Medscape article entitled IVIg for Sjogren's Neuropathy: Worth the Price? by Kevin Deane, MD Jan 17, 2013 found here. Dr. Deane's viewpoint on the issue:
These results suggest that IVIg may be useful in treating some neuropathic manifestations of SS, although the investigators' conclusions are limited as a result of the small sample and the retrospective, uncontrolled nature of the study. IVIg is expensive and has some toxicity, including risk for thrombosis and renal injury;[4] therefore, more data from controlled trials are needed before we can be certain of its precise role in treatment of SS-related neuropathy. Furthermore, clear guidelines on how to classify the various types of SS-related neuropathy and a better understanding of the underlying pathophysiologic mechanisms of SS-related neuropathy may help guide treatment.

 Two small studies, read this and this, conducted in 2009 would support the consideration of use of IVIg in treatment resistant PN, although as Dr. Deane noted above, the use of this treatment is not without risk.

I'm fortunate in that my symptoms of PN at this point, while bothersome, are not severe.

Do you struggle with peripheral neuropathy? What advice would you offer to Nancy?

Monday, January 21, 2013

Move This

After I shared my furniture-arrangement woes with y'all, I actually had a few folks ask specifically how everything looks now that the dust has settled.

Whew. We DID find a lot of dust with all that shifting and shoving...

So I make no claims to any kind of decor expertise here; my post really was to make good natured fun of my annual need to make John work really hard after the Christmas tree comes down.....but since you requested, here's the final result which left my room not screaming for more re-arrangement.

Note: all use of the words I and We are used in Royal terms. Y'all know who really did all of the work.

So I put the sofa table in front of my window and slid the sofa in front of it. I've had a sofa table and have never used it as one ever since I bought it about fifteen years ago....


I switched the overstuffed chair and ottoman to the other side of the room, opening up the space between the formal living room and formal dining room.


See?



This layout has the Lulu seal of approval.




Gosh. We really need a new couch and chair set. And, after we would buy new furniture, we'd need to REARRANGE IT! Hmmmmmmmm........Oh, John.....honey? 

Sunday, January 20, 2013

Ski While You Can, People

Yesterday about mid-morning, I received this text pic from my son and DIL:



....who has just the cutest raccoon hat in the whole WORLD, btw. I bought her a pair of slippers for Christmas that match. Not that she'd ever wear a hat and bathroom slippers at the same time.

The blue raccoon eyes match the color of DIL's eyes. Squee!

They're up skiing on Mount Hood taking advantage of the unusually clear weather here for January. After I received their message, I hoofed it on upstairs to look out my window at the mountain:


I was certain that even though Son and DIL had to be at least 90 miles away, I could see that little raccoon hat schussing down the slopes with my son close behind. What a gorgeous day for skiing! Sunny skies, crisp clear air, perfect temperatures, and an enormous snow pack! Brilliant!

Sigh. I miss those days. When John and I moved here from the midwest, one of the things that we promised each other was that we would make more time for skiing seeing as we were living much closer to a real mountain.

I can't imagine being able to manage one good run down the slopes these days. For one thing, my energy would have been totally expended simply by getting into all of the gear that skiing requires. Then there's the whole temperature thing. My body just doesn't regulate itself the way it used to; I'd spend all of my time either ripping off my jacket to stop myself from sweating, or huddled in front of the lodge fire trying to stop my shivering from the cold. Ah, well.... Wah wah wah....

At least some of my DNA is up there having a great time. Have fun, my son!

Saturday, January 19, 2013

An Anthropomorphism is a Good Thing

Well. Y'all and John, I'm sure, can rest easy now that my furniture is moved around and moved around and moved yet again. And is covered in junk tasteful decorative accent pieces.

 Red: my nod to the certain Oscar award for Le Mis. C'mon! Sing along with me: "RED! THE BLOOD OF ANGRY MEN!..."

Nothing -- but nothing -- screams tasteful like a clump of fake tulips.......  

........the theme of which is repeated here in the nearby tastefully painted fake oil painting. 

Now that my living room isn't screaming "REARRANGE ME FOR GAWD'S SAKE!", I feel so much better. Whew. A happy room is a happy Julia.

So do y'all think that the fact that inanimate objects speak to me strange? Be truthful here. I can take it. I suppose it may be a bit weird; but then each of us is given special abilities, I think....  My talent for dialoguing with statuettes and dogs and other unlikely things --  or anthropomorphizing --is just one of those kind of gifts.

I remember one instance in particular when this talent came in mighty handy when Daughter#1 was tiny. She had a terrible case of barf-everything-right-down-to-the-socks flu. I think she must have been about five or so. I felt so terrible for her: she was absolutely miserable, and as long as I knew she was not dehydrated and that it didn't continue for more than 24 hours or so, she'd be fine. But in the meantime the poor little kiddo just wanted it all to stop.

I did too. I hate feeling helpless in the face of my kids' pain. So I frantically thought of some way to divert her attention, and did the first weirdo thing that came to mind: I put her on my lap, told her to open her mouth, (hoping that she wasn't going to spew in the next minute or so) and told her I was going to have a conversation with the germs in her belly. The look on her face was a mix of terror and amusement as she scooted closer to me. I tilted her head back and took a deep breath.

"All RIGHT DOWN THERE!!! Listen up, you bugs! I know you're having one grand old party there in my baby's belly, but I'm here to tell you that the party is OVER. Right now. Yessirree! Don't make me come down there! Move out!"

She giggled and pushed me away, which was good because her breath was awful, poor thing. I asked her how she thought germs would decorate her stomach for a party. She's my artist kid and gave this some serious thought. I wish that I would have kept the picture that she crayon-ed for me of a flu bug party.

Unbelievably, she did not vomit once after the germs and I had this little Come-To-Jesus moment. And unfortunately, this maneuver didn't work that well in the years that followed with all of the kids as they had their share of the barfs. But. Many years later, as she was a sophomore in college and very, very ill from a mononucleosis type disease, I had to harness my special skills yet again. This time I directed my conversation to D#1's spleen.

Yes, spleen. It was very enlarged, which was not a good indicator of the severity of her illness. Yeah. I told the on-call physician that she had an enlarged spleen as he examined her. He adopted a very patronizing tone and look: "Well. That's a pretty advanced set of assessment skills for a mommy."

I could have slapped him.

But then as he palpated her abdomen and felt the margins of her enormous spleen, he looked up sharply at me and said, "Where do you work?"

"I'm a NURSE," I hissed. What a jerk he was, but I needed his body to remain unbruised and intact long enough to complete his exam and order some labs, so restrained my desire to strangle him and through gritted teeth told him exactly which labs I expected him to order. Which he did, and a few others just because I think he wanted to appear less stupid.

Where was I going with this.....grrr.....makes my blood pressure skyrocket just remembering it.....oh, righto.

So D#1 watched this all rather fearfully. She was one sick little puppy, she hurt, she was running a very high temp, and was just told that she was going to probably take some serious time off from college. Not a happy coed.

After Dr. DopeyHead had left and the lab person showed up ready to draw blood samples, D#1 burst into frustrated tears. I thought frantically how I might be able to comfort her and divert her attention from the needle. Isn't it interesting that  sometimes tactics that work with a five year old also soothe a very irate and ill 19 year old? (OR a cranky 55 year old autoimmune diseased woman, actually?)

I told her that I wanted her to lift her shirt up, just a bit over her bellybutton.

"Mom." she said between sobs. "Don't poke on my stomach any more, please!"

"No, no! I won't touch you, I promise! I just want to have a little conversation with Sophie."

D#1 looked at me as if I had three heads but at least quit crying. Momentarily.

"Yes. Your spleen's name is Sophie, did you know that?"

She rolled her eyes in the way that only a 19 year old girl can. But she became quiet, and didn't seem to notice that the phlebotomist had grabbed her arm and put a tourniquet on it.

I had to think fast. The needle was next. So I bent over her abdomen and spoke softly.

"Helllllooooooo, Sophie....."

D#1 couldn't restrain a bit of a grin. She tried really hard but ended up smiling goofily."

"Now, Sophie, girl. You simply must behave yourself. Settle down, Missy. We'll take good care of you but you have to mind nicely. Your human is going to get all better but you have to cooperate!"

This time the phlebotomist was the one to roll her eyes unbelievingly. I didn't care. D#1 had quit crying and the blood samples were in their tubes.

WOOT! Weirdness wins! I'm going to have to ask someone to yell at my misbehaving immune system next time I flare.

Friday, January 18, 2013

Understanding a Nummular Headache Study vs Moving Every Stick of Furniture in my House


THIS is what should be included in a responsible Sjogren's syndrome blog today:

A high prevalence of autoimmune indices and disorders in primary nummular headache.

Authors:
Chen WH, Chen YT, Lin CS, Li TH, Lee LH, Chen CJ.

J Neurol Sci. 2012 Sep 15;320(1-2):127-30. doi: 10.1016/j.jns.2012.07.029. Epub 2012 Jul 27.

Department of Neurology, Kaohsiung Chang Gung Memorial Hospital, and College of Medicine, Chang Gung University, Kaohsiung, Taiwan. brainhemostasis@yahoo.com

CONCLUSIONS: A high prevalence of abnormal autoimmune indices and disorders is present in primary NH patients, suggesting a probable relationship between autoimmunity aberration and epicranial neuralgia in NH.
I did not know that the word nummular means "coin shaped". You can read more about NH -- nummular headaches -- here.

BUT -- This is what I am actually fixated on for the day. Note the similarities in the following pictures?





Some folks would say that uncluttered walls and mantels and furniture surfaces are a thing of simple beauty. However, I'm not one of them. So now that the Christmas junk decorations have been packed away, all this empty space is making me crazy-ier.

John is worried. He's seen this behavior in me before: pacing around the house with one hand on my chin and repeatedly saying "Hmmmmmmm". He knows that this inevitably leads to a lot of work. Because after the hmmmmmm-ing ends, the furniture moving begins.


Just look at that. Doesn't this room just scream "MOVE THE STINKIN' COUCH"? I hate to see a room in misery. And it is, I'm certain. It is just crying for the sofa table to be slid in front of the window and the sofa in front of that, which means that we'll have to think of something to do with the big chair and....... hmmmmm.

John knows that HE will be moving the furniture since I have SJOGREN'S SYNDROME here, people. And I've just had synovial fluid sucked ruthlessly out of my knee. But I am determined to relieve this poor room of it's suffering by personally directing others to lug around large pieces of furniture, in spite of my overwhelming burdens.....sigh. I know...I'm so modest about it all.....

Then all the bare surfaces need to be covered with junk attractive decor accessories which are indicative of A) an upcoming holiday, or B) a change in the seasons. Which also means that after John is finished hefting around couches and chairs, he is required to head to the attic where he's just stuffed all of my Christmas junk decoration boxes and search for the other junk decoration boxes marked "spring" or "Valentine's day". And, once located, of course they need to migrate downstairs to my newly-rearranged rooms.

Oooo. My son and his wife are coming to visit this weekend. More muscle power, yes. But also more people to coordinate and direct. Boy. I'd better limber up my pointer finger. This could be exhausting.

Thursday, January 17, 2013

There's a Mouse in my House


Actually, there's lots of them. Here's a sampling of the cute mousie critters that I was given over the holidays.

I just love 'em.

More importantly, I love what they represent: that at this point in time, modern medicine has provided some relief -- albeit not a cure -- for my autoimmune disease. Yeah, mouse drugs!

Wednesday, January 16, 2013

Love Those Needles

Several people wondered if I was getting another rituximab infusion yesterday after posting a picture of my mousie candy canes in a clinic procedure room.

Actually, no. Not rituximab. My infusions are planned to occur about twice a year, so I wouldn't be due for another one until early spring. But I did have a procedure, and it wasn't what I expected.

I've had ongoing issues with hip -- or trochanteric, more specifically -- bursitis. Things were beginning to flare up again there, and so I went in to talk to Dr. Young Guy about injecting that cranky bursa of mine again, which he did. Ahhhhh. Feels so much better already. Watch this YouTube video to learn more about TBursitis. For those of y'all with needle issues, you may want to fast forward through the injection procedure:


I just want to point out here that this HAND does not appear to be one that would be attached to the owner of this hip; hence I'm guessing that it is NOT a "patient identifying the area of pain". 

I had also been having problems with my right knee, which was warm and swollen and painful. I have had less significant issues with this in the past, of which Dr. YG was aware; so I blithely told him to just inject my knee, too, while he had all his betadine swabs and injection procedure kits close by. I yoinked up my stretchy yoga pants leg and pointed to the spot. He frowned, pressed on the swollen area, and took a closer look.

"Wow. Looks painful. I'm going to need to aspirate some of that fluid, first."

Um...ok....

"Lie flat and DON'T move your leg." He began poking and prodding, disinfected the area, sprayed an anesthetic on my knee, then reached for the betadine swabs and began swabbing after which he placed a needle attached to a syringe into my knee joint (YOWSERS) and withdrew a syringe-ful of yellowish liquid. After the procedure I asked to see what my synovial fluid looked like and thought it resembled plasma, actually. Which would make sense.

Image found here

He then took a new needle and syringe and inserted a steroid solution into the joint. (YOWSERS AGAIN) I had to mentally remind myself that I had actually asked for this. Yes, I did. So just suck it up, Missy.....

As we were discussing my follow-up appointment and after-injections home care, I told him that I assumed that it would be similar to having my bursa injected: one day of ice and rest and then back at 'em. Right? Right, Dr. YG?

"Er. No. You need to try to stay off your knee for about five days."

Crumb. (You asked for this, Julia.....)

Today I'm feeling the benefits already of both my hip and knee injection. And I'm trying to be patient about the five days of rest thing. I've calculated that I probably only have about six to eight weeks left of rituximab energy on board, so I hate to waste what amounts to almost a whole week of down time.

BUT. I know.....I know.....pain free and healthy joints are worth some serious couch time. So I'm on it.

Like my black woolie sock with my slippers, hm? Stylin. 

Tuesday, January 15, 2013

Sweet Mice


Check out my latest mousie themed treats for Dr. Young Guy and his staff, courtesy of my awesome daughter - in - law.

Monday, January 14, 2013

Seeing Stars

Hubble image found here

So I was cruising along, smug as heck about making it through the holidays without a crash. John and I were driving home from a delightful dinner when I noticed something very odd. The lights from the oncoming cars suddenly looked.....strange. Like there was a distinct starry pattern coming from each headlight. And the streetlights looked as though the light was broken up into teensy pieces and the light was swirling around like a cloud of bugs around each bulb.

STRANGE.

I commented about it to John, who wasn't seeing the same things that I was, silly man. Pfft. What's wrong with his eyesight, I wondered...

Then my ears began to ring at a roaring volume. And the whole world tilted sideways. As we pulled into the garage, I still was stupidly wondering what was going on inside my weirdo head, and about the time that I hung up my coat a dull ache smack dab in the middle of my forehead began.

Rats. Another migraine. Dang. I thought I would just zip through the holidays without any issues but yet again, I realized that I should quit with the smugness attitude since it always seems to precede some kind of reality check.

I made a panicky grab for my meds and slugged them down as quickly as I could. They did their job well, and within an hour I was pain free and the world regained it's balance. One of the side effects listed for Imitrex is "drowsiness", and boy howdy, what an understatement. But since unfortunately I'm aware of this drug's side effects after using it several times, I was prepared. By the time the "drowsiness" or more specifically, the "buh bye, going to sleep for about 12 hours" hit, I was in my jammies and tucked into bed.

I'm not certain that the grogginess that persists for about 24 hours afterwards is related to the migraine.......or the Imitrex. I suppose it really doesn't matter since I'll trade the feeling of super-sized brain fog vs migraine symptoms any day.

Having another appointment with Dr. Young Guy soon. I'll have to run my concerns past him.

Do you have migraines? What sorts of symptoms do they cause for you? Dumb stupid headaches.....

Sunday, January 13, 2013

Two Things

Yeah, well.....John doesn't get this adoring look when he says it to ME. Image found here 

First: I'm still working on the inability for some readers to leave a comment issue. After changing a few settings the site was flooded with spam; so those were quickly re-set. I also found that those that read on an RSS feed reader don't ever see a comment button, in spite of my template there specifically dictating one. Hm. The quest continues. In the meantime, if you would like to post a comment and can't, just zip me an email, which does seem to be working, and I'll post the comment for you.

Second: I need someone to concoct a zippy comeback for me. The reason is this: John and I were watching "How Green Was My Valley" the other day, and during the movie, the father character turns to his elderly wife and says, "Och, but you're an old beauty, ye are..."

John's eyes lit up and he grinned wickedly. I pointed a finger directly at his nose and threatened him with bodily harm if those words EVER crossed his lips, especially if they were directed specifically to me.

John is constantly on the lookout for um......unusual.....terms of endearment for me, bless his heart. Which I appreciate, really I do. Mostly. But this one just bugged me.

So for the last few days, at every opportunity, his eyes will twinkle and he'll say, "Och, but you're a (significant pause) beauty, ye are..." after which I'll whap whatever part of him is closest to me.

I need help, people. The movie doesn't provide any snappy dialogue that I can respond back with an appropriately snarky compliment. I just know y'all can come up with a great comeback line. I just know it. Please?

Saturday, January 12, 2013

A Remarkably Un-Doofus Thing

Image courtesy Wikipedia. 

Gotta share an incident with y'all -- one in which I didn't plant my foot in my mouth for a change. And, yes, this type of thing is unusual so I think it deserves immediate documentation.

John and I had gotten up early one morning and had breakfast at a restaurant at 6-stinkin'-too-early-AM. In spite of the early hour, the place was jam packed and one lonely waitress was sprinting around the building taking everyone's orders and delivering their food.

I watched this gal in awe. She had to have been about my age, but was in superb condition judging by the absence of sweat or gasping breath as she calmly but rapidly delivered everyone's breakfast. Amazing. Even though I was still waiting for the effects of my freshly brewed coffee to hit my brain, I could see that she was a model of efficiency and wasted not a single movement or second. She hefted huge platters of food effortlessly and plunked heaping plates and full mugs on the tables quickly yet without spilling a thing. OR, from what I could gather, getting any of the orders wrong. Our steaming omelettes and hot buttered toast slices were in front of us accompanied by coffee, juice, and water in an astoundingly short amount of time.

What's even more amazing that it was all done with a sincere smile. HOW DID SHE DO THAT?

As John paid for our meal, I still was not awake for the day, so was standing behind him with arms crossed over my chest, looking slightly dazed, I'm sure. And not smiling, either. I don't smile when I'm not actually consciously inhabiting my body. But I was cogent enough to recognize that this woman deserved some praise for a job well done. So I said,

"Oh, miss?"

She looked at me rather warily. I'm guessing my body language wasn't conveying anything positive.

"I think that you are the best waitress that I have ever seen in my life!"

Her tentative smile suddenly turned up a notch to brilliant.

"You don't know how much that means to me! Thank you! I've been here alone since my coworker called in sick and it's just been crazy! But now I don't care because you just made my day!"

She looked as if she might vault over the cash register and hug me, but instead zoomed off to seat yet more customers coming through the door.

We had left a larger than usual tip on the table; and after she scooped it up while cleaning up our dishes, she ran to the restaurant door and waved at us. I turned back to look as I was getting into Goldie, and she shouted her thanks yet again, then dashed back to work.

Ahhh. I love when on extremely rare occasions the perfect thing pops out of my mouth.

Does one good comment negate one doofus one? If so, I've got a lot of work ahead of me....

Friday, January 11, 2013

Talk To Me


Recently, I have had several readers send me emails about their inability to leave comments on my posts.

So sorry about that, guys!

I have checked with Blogger and changed a few settings, so if you have the time, please do me a favor and leave a test comment on this post.

Wait......maybe I should jazz this request up a bit. Who wants to read a list of comments that reads "testing" "test" ad nauseum? Boring.

Leave a comment about.....the best thing that has happened to you today. Or whatever topic motivates you to hit the "comment" button.

And -- if you still can't leave a comment PLEASE send me an email. I want to fix this.

Thursday, January 10, 2013

What Goes Up Must Come Down


We left the house for our San Francisco/Las Vegas adventure in a flurry of activity: packing, arranging for schnauzer care, and preparing Goldie for yet another long road trip. But we didn't have time to pack away any of our Christmas decorations before we left, so when I walked back into our house on our arrival home, I was greeted with all the trappings of the holiday.

Which was fine, I guess. At least the house was tidy and still smelled faintly of my apple cider - scented candles in the Christmas centerpieces. And there were a few leftovers: a couple slices of fudge tucked away in a ziplock bag in the refrigerator; a few sugar cookies in the cookie jar and lots of candy canes still hanging on the tree.

But all good things must come to an end, even temporarily, so my latest task is to summon the determination and energy to begin the de-holiday-ing of the house. It's going to take awhile.

It's always so much fun to put up all of my favorite decorations. I love that moment when the tree is decorated, the nativity scene is in place, and all of the storage boxes and wrappings are hidden away in the attic. I turn on the fireplace and sit in front of the firelight quietly -- just waiting for the Christmas season to truly arrive. Ahhh.

But. What goes up must come down, and so it's that time....I've been less frugal with my energy stores over the past week with our galavanting around Nevada and California, so I'm going to have to take my time and approach this big project slowly.

Some people have periods of sadness during the holidays, but I find myself feeling a little blue after all the celebrations are over, especially this year. After my previous Christmases which were pre-rituximab, I recall enjoying the holidays but also remember feeling a sense of relief that they were over. But this year? After we closed the door on Christmas day when the last of our guests headed home, I turned to John and told him that I wanted to do it all over again.

What fun.

It's not nearly so much fun dragging out the packing boxes and searching for each ornament on the tree. And I can tell already that my rituximab energy may have peaked and is now on the slow decline. If I behave myself and pace myself during this task, I'll probably get through everything without avoiding a crash.

Wish me luck.

Wednesday, January 9, 2013

Cardiac Involvement in Sjogren's Syndrome?

Image found here

Check out this recently published study regarding Sjogren's syndrome and heart function:

Clinical Investigative Medicine, 2012 Oct 6;35(5):E303.

Atrial electromechanical delay and diastolic dysfunction in primary Sjögren syndrome.
Akyel A, Tavil Y, Tufan A, Yayla C, Kaya A, Tezcan ME, Ozturk MA, Boyaci B. Etlik Ihtisas Education and Research Hospital, Department of Cardiology, Ankara, Turkey.

PURPOSE: In this study we aimed to investigate myocardial function and atrial electromechanical properties by conventional and tissue doppler echocardiography in patients with primary Sjögren syndrome.

CONCLUSION: Myocardial function is disturbed and there is significant atrial electromechanical delay in patients with primary SS. This study is the first to show altered myocardial function and atrial electromechanical properties in primary SS.

I find the results of this small study (Forty patients with Sjogren's syndrome and 25 age- and sex-matched healthy volunteers) intriguing. However, because of the small population of the study, I would guess that many more studies of similar nature would need to be conducted on a much larger scale to confirm their conclusion.

If you want to learn more about the basic anatomy and physiology of the heart, and specifically electrical conduction aspects of the heart which causes the heart to beat, read this, and this

Tuesday, January 8, 2013

I Can Explain.....

....yesterday's post.

It all started back during the Christmas holiday. All of our family was home, which was wonderful. One evening as we were all having dinner, the subject of how everyone was returning to their homes cropped up. Son and Daughter-in-law, and Daughter#2 and Son-in-law had an easy zoom-north-on-the-freeway trip. Daughter#1 had a flight booked to take her back to San Francisco. During the conversation about the kids' upcoming journeys, John sat back in his chair, crossed his arms over his chest, and adopted a thoughtful expression.

"Hey. How about we DRIVE Daughter#1 back home? Via Las Vegas?"

Earlier in our marriage, I would have been astounded at the thought of traveling south through Oregon and over to Nevada as a route to San Francisco. But after all these years I know my husband....and how he takes enormous pleasure in getting behind the wheel of a car and driving for leg-cramping, mind-numbing distances. He justifies this by pointing out that Goldie gets exceptional gas mileage: averaging between 40 -- 50 mpg.

She really does get excellent gas mileage. Even over the Siskiyou pass

Daughter#1 has inherited this um.....interesting....enjoyment of excruciating long car trips. "COOL, Dad! I'll call the airline and cancel my flight!"

I blinked. How did this get decided? "Wait a MINUTE, guys......"

But they were both off and running; John rubbing his hands in glee before he grabbed his well-thumbed copy of a road atlas, and D#1 speed-dialing Virgin Airlines.

Fast forward several days and several boring travel details: as I published yesterday's post, John and I were sitting in a casino playing video poker and enjoying a few adult beverages. This place in particular makes a delightful bloody mary, just the way I like it: only slightly spicy but very tangy, and with extra olives. As in a whole other glass-full of olives on the side. Mmmmmm. A salad in a drink.

Suddenly I realized that I hadn't put anything up on Reasonably Well. I lamented the fact that my brain was completely non-functioning to John, who immediately volunteered to dictate that day's post. Which he did. Which is what I put up on the blog. Which was rather strange, I admit.

I woke up the next morning with a furry tongue, a headache, and a decidedly cranky attitude.

"WHY do I feel as though I have a hangover?" I mumbled into my pillow. Crankily.

"Gee. Maybe because you have a hangover?" John suggested with a wicked gleam in his eye.

I had to think about that as I burrowed my face deeper into the pillow. Was it possible.....that.....I just.....

"Oh, man. That's so pathetic!"

"What? I thought it was a nice evening!" John protested.

"No. It's pathetic that I couldn't remember why I would have a hangover!" I sat up. Then flopped back down on the bed.

"So......I remember having a bloody mary with lots of olives."

John nodded. "Yes. I think you had several."

Olives??

"No. Bloody mary's."

It came back to me in a rush as I stuck my arm out and blindly groped for my water bottle. As I drained fully a half of it's contents, I realized that yes, I did indeed have a few adult beverages. But just a few. Really. These days it only takes one or two to make me feel the effects the next day.

After an eye-opening shower, we hit the road for the return freeway marathon after filling Goldie up with gas, and me up with breakfast and coffee. Whew. The ride was fairly uneventful with one exception. I was playing solitaire on my phone as the miles rolled by, when John snorted with laughter.

"Hey, Babe! Look at the trailer packed with ostriches!"

"Yeah, right. MmmHmmm. Sure thing, honey."

"No, really! Look!"

Guys. He was right. Seriously. We laughed the rest of the way home.

The picture is really lousy, I know. But trust me -- they're in there. 

Ahhh. Nothing like an unexpected ostrich sighting to liven up a road trip.

So. This may explain not only yesterday's weirdo post, but also my unavailability over the last few days in responding to emails or comments on Reasonably Well.

But I'm BACK! See y'all tomorrow.

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