FDA: Methotrexate Recall

The FDA has announced a recall of several medications including methotrexate:

FOR IMMEDIATE RELEASE – April 23, 2015 – Mylan N.V. (Nasdaq: MYL) today announced that its U.S.-based Mylan Institutional business is conducting a voluntary nationwide recall to the hospital/user level of select lots of the following injectable products due to the presence of visible foreign particulate matter observed during testing of retention samples.

NDC Number	Product Name and Strength	Size	Lot Number	Expiration Date
67457-464-20	Gemcitabine for Injection, USP 200mg	10 mL	7801396	08/2016
67457-464-20	Gemcitabine for Injection, USP 200mg	10 mL	7801401	08/2016
0069-3857-10	Gemcitabine for Injection, USP 200mg	10 mL	7801089	07/2015
67457-463-02	Gemcitabine for Injection, USP 2 g	100 mL	7801222	03/2016
67457-462-01	Gemcitabine for Injection, USP 1 g	50 mL	7801273	05/2016
67457-493-46	Carboplatin Injection 10mg/mL	100 mL	7801312	06/2015
0069-0146-02	Methotrexate Injection, USP 25mg/mL	2 mL (5 x 2mL)	7801082	07/2015
0069-0152-02	Cytarabine Injection 20mg/mL	5 mL (10 x 5mL)	7801050	05/2015

Methotrexate Injection, USP 25mg/mL can be administered intramuscularly, intravenously, intra-arterially, or intrathecally and is indicated for certain neoplastic diseases, severe psoriasis and adult rheumatoid arthritis. The lot was distributed in the U.S. between Jan. 16, 2014, and March 25, 2014, and was packaged by Agila Onco Therapies Limited, a Mylan company, with a Pfizer Injectables label. Continue reading here. 

Thanks to CreakyJoints.org for alerting us to this important piece of information.

While methotrexate is most often used in oncology and also for rheumatoid arthritis, on occasion it is also prescribed for other diseases, such as joint involvement in Sjogren's syndrome. Read this by Alan N. Baer, MD, FACP,  Director, Jerome Greene Sjogren's Syndrome Clinic found here:

The arthritis of primary SS is mildly inflammatory and a manifestation of the systemic autoimmune disease. The mechanisms responsible for this arthritis may include systemic factors which affect the joint tissue secondarily, such as immune complexes (which can induce inflammation in small vessels) or inflammatory mediators (such as cytokines, which induce physiologic changes in various tissues). Alternatively, the immune reaction may be directed specifically at a structural component of the joint, thereby inciting an inflammatory response. 

Many treatment modalities are available to treat joint pain associated with SS. If the joint pain is mild and intermittent, acetaminophen or short courses of non-steroidal anti-inflammatory drugs (NSAIDs) available without prescription may suffice. If the joint pain is more persistent, prolonged use of prescription-strength NSAIDs may be required. Chronic therapy with prescription-strength NSAIDs has a risk of inciting potentially dangerous stomach ulcers in up to 4% of patients each year, particularly in elderly individuals as well as those who are taking blood thinners or corticosteroids or who have had a prior history of stomach or peptic ulcers (12). Steps can be taken to reduce this risk. These include using the lowest dose that controls the joint pain, taking the NSAID with food, choosing an NSAID with a lower risk of gastrointestinal side effects, and taking a proton-pump inhibitor, such as omeprazole or pantoprazole, along with the NSAID on a daily basis (13). Hydroxychloroquine (Plaquenil) is commonly used for treating joint pain in SS patients, based in part on its efficacy in treating the joint pain of patients with systemic lupus erythematosus and rheumatoid arthritis (14-15). It is generally well- tolerated but its use for a period of 10 years or more is associated with potential damage to the retina of the eye in 1 out of 1000 patients. Patients taking hydroxychloroquine for prolonged periods should thus have yearly eye examinations (16). 

More severe forms of arthritis associated with SS may require treatment with disease-modifying anti- rheumatic drugs other than hydroxychloroquine. These include methotrexate, leflunomide, cyclosporine, TNF antagonists (such as etanercept, adalimumab, and infliximab), and rituximab. Prednisone can be a very effective and quick-acting treatment for arthritis, but chronic therapy, even in low doses, leads to an increased risk of osteoporosis. Higher doses should only be used for short periods of time, since these can result in so-called Cushingoid side effects, such as weight gain, diabetes, bruising, and an increased risk of infection.

If you are taking methotrexate, check your medication container for lot number, size, and expiration date found on the graph above.

This Marks the Spot

I hate being a whiney-butt. Especially when I'm whining about a pain in my butt. Or, more accurately, my hip. I have chronic trochanteric bursitis where my right femur bone fits into my hip socket.

However if the occasion warrants, in spite of my whining-adverse tendencies, I whine to my heart's content. After all, what's a blog for if not for sharing anything at all, including whining? So here goes: Yes, my right hip hurts like HECK. And my pain is completely typical of this condition. This from the Cleveland Clinic:

Trochanteric bursitis typically causes the following symptoms:

• Pain on the outside of the hip and thigh or in the buttock.
• Pain when lying on the affected side.
• Pain when you press in on the outside of the hip.
• Pain that gets worse during activities such as getting up from a deep chair or getting out of a car.
• Pain with walking up stairs.

l've been dealing with TrB for three years. After all this time, I know the drill when these symptoms flare: I get out my ice packs, pop a few ibuprofen, try to rest the joint, and when my pain causes me to limp and I find the need to haul out Candy the cane I call Dr. Young Guy to ask if it would be appropriate to do another steroid injection into the bursa to calm things down.

So, here's where the whining ensues: yep, my hip hurts like crazy, yes, I'm finding it really hard to go up steps, and yes, the pain is causing me to limp requiring the use of a cane.

I made the call, and am heading in for my injection tomorrow. After three years, I have a pretty good idea of what will transpire at the visit. Dr. YG will do a brief exam while asking more about my symptoms. We'll probably discuss the potential for the Portland Trail Blazers basketball team to win the playoffs, and then he'll ask me to point to the exact spot where my pain is the worst. Which is where he'll do the injection after palpating the area for the bone landmarks.

I decided this time I'd save myself the trouble of poking and prodding my outer hip on the exam table by finding THE spot myself at home. And then marking it with a Sharpie. Just like this one.

This seemed like a good idea at the time. And how hard could it be?

Yeah. Well.....the whining continues:

So y'all know me well enough to realize that nothing is simple; and nothing is easy; and most of my ideas aren't especially good ones. But then, being me, usually still plow ahead when inspiration strikes anyway.

I rummaged around in my junky junk drawer to find my Sharpie marker. I usually keep several of these things around because they're pretty useful for lots of things. I don't think I've ever used one to mark anywhere on my person before, though. After choosing the black (thinking that the metallic gold may be a bit too gaudy for a medical procedure) I headed over to the family room carpet and plopped down and wiggled my butt out of my yoga pants.

This was not an attractive pose.

Then I slung my right leg as far as I could over my left, and immediately whapped my leg into the couch after which I realized that I had plopped myself too close to the furniture, which prompted me to scootch over. Which twisted my yoga pants and underwear into a rather unusual and um....uncomfortable configuration. I decided further wiggling and scootching wasn't worth the effort, so began to probe my hip for the most painful spot.

This is hard to do lying on your back, one leg swung completely over the other, with your undies in a bundle, and your left hand clutching a Sharpie. (I'm left handed.) Ah, but I'm a persistent person, and after much fumbling around with my right hand, decided on the perfect injection location. Then realized that I had left the cap on the Sharpie.

Oh, brother.

I took my right index finger off of THE SPOT and reluctantly decided to begin the process anew after uncapping the marker. I un-bundled my yoga pants and repeated my gyrations, confidently sent my left hand over to my right hip while lying on my back, with one leg swung completely over the other, and my undies in a bundle (yes, it happened again. Don't ask me how) and after another painful few minutes found THE SPOT. Then I realized that in this position, I couldn't see where THE SPOT was. Which was problematic because I have a tremor. And not particularly good hand-eye coordination especially without the eye part.

You can guess what happened next.

Yeah. I had envisioned putting a small, perfectly placed black dot on my hip. But instead, after making the mark and unwinding myself and standing up to scrutinize my efforts, realized that what I had done is to create a series of scrawls that looked like a Chinese character tattoo.

I pondered my situation for a few minutes during which it occurred to me that I was glad that I had left my shades down on my curtains seeing as my pants were still mid-thigh. It also occurred to me that Sharpies are PERMANENT MARKERS.

Yeah.

I hopped over to the bathroom, sudsed a washcloth up with hand soap, and scrubbed away to no avail. It appears that my hip scribble is there to stay until it wears off.

.::facepalm::.

Once again, I found myself thinking WHAT WAS I THINKING?

People. I'm hopeless. I'll let y'all know what Dr. Young Guy says when he sees my artwork. I'm so embarrassed. But he knows me and actually, in all probability won't be surprised at all.

I'll bet you aren't, either.

Less is More

I love Twitter. I find the requisite brevity a very good thing. 

Sometimes, when thinking about coping with autoimmune disease, it helps to simply. Here's two minimalist gems from Twitter:

Predisone and you:
Eating well and exercise
Lessen side effects
#RheumHaiku by Rheumatology Pearls

When you wash your hair in accordance with your dr appointment schedule...
#ChronicLife by Cindy

Is Your Bladder a Real Pain?

I love attending our Sjogren's Syndrome Foundation support group. For a lot of reasons, one being the several "ME TOO!" moments in our discussions.

During last month's meeting, one of the members hesitantly brought up the topic of how Sjogren's has affected her urinary tract. "This may be too personal, but........does anyone else have real problems with frequent bladder infections and a really irritable bladder overall?"

"YES! ME TOO!" everyone chorused. I swear. Every person at the meeting, and there were about a dozen of us, practically jumped up from our chairs voicing our assent. Which was followed by hearty laughter. Yeah. I guess we are part of the cranky bladder sisterhood, and apparently there's lots of us. According to the SSF, about 25% of IC patients have a definite or probable diagnosis of Sjögren’s, and as many as 14% of Sjögren’s patients are estimated to have IC.

The following information is copied from the Sjogren's Syndrome Foundation Patient Education Sheet found here:

Patient Education Sheet 

Interstitial Cystitis or Bladder Pain Syndrome

The SSF thanks the Interstitial Cystitis Association (ICA) for authoring this Patient Education Sheet.

Interstitial cystitis (also known as IC) is a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, urinary frequency (needing to go often) and urgency (feeling a strong need to go). IC also may be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain (CPP). The exact cause is unknown, but researchers have identified different factors that may contribute to the development of the condition. About 25% of IC patients have a definite or probable diagnosis of Sjögren’s, and as many as 14% of Sjögren’s patients are estimated to have IC.
Some things you can do to control your IC include:

• Avoid or limit foods and beverages that may irritate the bladder, including coffee, tea, soda, alcohol, citrus juices, and cranberry juice. For some, spicy foods may be a problem as well as foods and beverages containing artificial sweeteners.
• Apply heat or cold over the bladder or between the legs to alleviate some pain.
• Modify or stop Kegel exercises which may make pelvic floor muscles even tighter.
• Avoid tight clothing to prevent further irritation and restricted blood flow to the pelvic region.
• Treat constipation. It can add pressure to the pelvic area and increase pain and discomfort.
• Develop healthy sleep habits as sleep is crucial for pain control.
• Adjust fluid intake. Increase or decrease depending on your situation.
• Retrain your bladder by learning to urinate on a set schedule and not when your bladder tells you.
• Find healthy ways to manage your stress since it may make IC symptoms worse.
• Find, in advance, the location of restrooms along your route when traveling.
• Get active! The health of your bladder depends on good blood flow to the area and on having flexible and strong muscles around your bladder and other pelvic organs to protect and support them.
• Quit smoking. Cigarettes may irritate the bladder and worsen pelvic and bladder pain.
• Take a trial and error approach to treatment as no one treatment works for everyone. A combination of
• treatments is often necessary to get your IC under control.
• Track how your symptoms change with treatment and speak with your healthcare provider if you think a therapy is not working.

Visit the Interstitial Cystitis Association website, www.ichelp.org, for the most up-to-date and accurate information about IC and to find knowledgeable healthcare providers.

For more information on Sjögren’s, contact the Sjögren’s Syndrome Foundation at:

6707 Democracy Blvd, Suite 325, Bethesda, MD 20817 • 800-475-6473 • www.sjogrens.org • ssf@sjogrens.org.

Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients.

Ever wonder what various colors and characteristics of urine may indicate? Check out this fabulous infographic created by the Cleveland Clinic found here. 

Love the comment about purple. Go read this very good infographic on the Cleveland Clinic Health Hub website. 

Supervision is Taxing

Ah, yes. It was exhausting overseeing the painting crew for D#2's apartment yesterday.

Lulu and I are simply worn out.

AND I had to shoulder the kitty petting duties as well.

If I must, I must. What a brutal afternoon.

Oops, I Did It Again

Usually I like shopping at my local Fred Meyer store. It's one of those places that carry darned near anything you could possibly want. It's close by, convenient, and it always has several motorized shopping carts waiting by every entrance.

But I think they may not want me to shop there anymore. I have an.....um......interesting history with Fred.

Last summer I was zooming around in one of their motorized shopping carts. I zipped through the produce department, took a right at the toiletries, and knocked over an entire display of sunglasses. It created a spectacular crashing mess.

Oops.

I'll bet the store manager had the entire incident captured on surveillance camera footage and alerted the staff to ban me from plopping my fanny in one of those motorized things. I suspect that they have my face posted on the Fred Meyer version of WANTED posters back in the stock room, so I've been kind of avoiding using their putt putt carts. 

Until yesterday. My dumb stupid knee was acting up, and I thought enough time had passed that it was safe to shop in this store and use their motorized shopping carts again......but I was wrong.

Because this go around after speeding through the produce section, I rounded the corner into the snack aisle and almost killed Captain America.

Yeah. With one of their trusty AMIGOs.

There Captain America was, looking all super-hero-like and standing watch over his Doritos display, when......WHAM. I smacked into him going full throttle.

Lucky for the big guy, I only bent one of his corners. 

I'm thinking that I may have escaped notice this time since cardboard and potato chips are much quieter than a huge sunglasses display when rammed with an AMIGO shopping cart. Somebody should talk to good old Fred Meyer and tell him that their carts simply go TOO FAST. This couldn't have possibly been my fault, could it?

Nah. 

Grow Your Own Therapy

How fortuitous. I happen to have several juicy lemons in my fruit bowl. 

Personally, as someone who has issues with osteoarthritis, particularly in my knee; I think that the Universe is telling me something important by releasing both of these news stories on the same day.

First, this:

Sugar as a Stress Reliever 

TONY CENICOLA / THE NEW YORK TIMES
By NICHOLAS BAKALAR
APRIL 23, 2015 

Many people consume sweets in response to stress. Now researchers may have discovered why. Sugar reduces levels of cortisol, the stress hormone. Continue reading here. 

I know what you're thinking. Julia, you're thinking. What? You're off your rocker yet again, woman. There's no connection between sugar and the osteoarthritis in your bum knee.

Ah. But you're wrong. Read on:

Patient's own fat cells transplanted to treat osteoarthritis may be effective 

Osteoarthritis (OA), a debilitating and painful degenerative disease, strikes an estimated 14 percent of adults 25 years of age and older, a third of adults age 65 and older in the U.S. alone. Those who suffer from OA may one day have a new and effective cell therapy, thanks to a team of Czech researchers who studied the effectiveness of using an OA patient's own adipose (fat) cells in a unique transplant therapy aimed at reducing the symptoms of this prevalent and difficult to treat condition as well as healing some of the damage caused by OA. 

The Investigational Review Board of American Naturopathic Research Institute/Naturopathic Oncology Research Institute and local ethics committees-approved study, carried out with 1,114 OA volunteer patients who received autologous (self-donated) fat cell transplants after giving their informed consent, saw their symptoms improved by the therapy. Continue reading here. 

See? SEE??

You don't?

OK. I'll spell it out for y'all. So researchers have been able to show a link between sugar and stress relief. When I employ this stress relief benefit by chomping into one of my delicious lemon cookie bars and in response my less-stressed body grows adipose tissue, I am in effect GROWING MY OWN treatment for the osteoarthritis in my knee.

Wow. Thanks, Universe! Man. I knew my lemon bars were therapeutic.

Do you need to grow your own osteoarthritis treatment? Here's my (and Ina Garten's) recipe. That'll do it.

Lemon Bars
Recipe courtesy of Ina Garten and found on Food Network here.

Ingredients

For the crust:
1/2 pound unsalted butter, at room temperature
1/2 cup granulated sugar
2 cups flour
1/8 teaspoon kosher salt
For the filling:
6 extra-large eggs at room temperature
3 cups granulated sugar
2 tablespoons grated lemon zest (4 to 6 lemons)
1 cup freshly squeezed lemon juice
1 cup flour
Confectioners' sugar, for dusting
Directions

Preheat the oven to 350 degrees F.

For the crust, cream the butter and sugar until light in the bowl of an electric mixer fitted with the paddle attachment. Combine the flour and salt and, with the mixer on low, add to the butter until just mixed. Dump the dough onto a well-floured board and gather into a ball. Flatten the dough with floured hands and press it into a 9 by 13 by 2-inch baking sheet, building up a 1/2-inch edge on all sides. Chill.

Bake the crust for 15 to 20 minutes, until very lightly browned. Let cool on a wire rack. Leave the oven on.

For the filling, whisk together the eggs, sugar, lemon zest, lemon juice, and flour. Pour over the crust and bake for 30 to 35 minutes, until the filling is set. Let cool to room temperature.

Cut into triangles and dust with confectioners' sugar.

The Bottle Boys Are Awesome

Here's an amusing little piece of musical entertainment for you. Are you reclaiming some energy like I am today? Hit the play button the next time you need a soundtrack for your nap:

I'm Saving the Big Guns

Now THAT'S a gun. Public domain image found here. 

Guys. Some things about dealing with this disease never get any easier, do they?

Everyone, and I mean everyone dealing with autoimmune disease, probably has had been put into the crummy situation in which a choice needs to be made: do I have to explain to someone exactly how sick Sjogren's can make me? Or do I agree to a commitment for which I in all probability will not have enough energy to uphold?

I've become so accustomed to the luxury of rarely having to plead my case for limiting my activities: I know I look kind of healthy because today I actually took a shower, put on some makeup and am wearing something not my jammies; but actually I only have about two hours worth of energy for this outing. Or something to that effect. I can't think of the last time I needed to haul out that explanation for autoimmune fatigue. When I need to bow out of an event or an outing, my family and friends understand that I wouldn't fake something as nasty as this disease. That when I say I'm done for the day, or that I need to escape from the sun or when I have to lie down immediately, I'm not exaggerating. I'm not lazy. I'm just doing the best that I can. What a gift it is to be surrounded by people that understand. Sometimes I forget that there is people out there that simply don't.

Yesterday I walked into a situation in which I was asked, "Are you working?" and when I replied that I wasn't but didn't get a chance to elaborate, I heard, "Well then get off your DUFF and join the blah-blah-blah" group!"

Really? REALLY?

I suppose it wouldn't have been nice if I would have told her what to do with HER duff.

Ten years ago, I may have wasted my time and breath trying to present a non-whiney-butt description of what it means to have an invisible illness; that not all debilitating diseases come with obvious signs and symptoms. But yesterday?

Nah. Yesterday I just walked away. I figure I've got to choose my battles - and this one wasn't worth hauling out the cannons.

In all fairness, this woman who was pushing 80 probably didn't have much of an understanding of what autoimmune disease is much less something with a name like Sjogren's syndrome. And judging by my limited experiences with her, I'd guess that she really didn't mean to imply that I was a lazy good-for-nothing slug. No, she was just trying in her very gruff manner trying to recruit members for her group. And no, she wasn't being diplomatic or gently encouraging in her manner. But she meant no harm, of that I'm sure. Yes, I need to choose my battles, but this lady wasn't waging war. Heck, she probably had no idea that she had fired the first volley. I decided that I'd cut her a little slack.

Years of experience has brought me to this perspective: that I don't need to and I can't educate everyone about my own personal health issues, because there's millions and millions of people just like me walking around. There are indeed important battles to fight and a war on education and awareness to win. I'm saving my ammo for the people that are in possession of factual information yet still choose to be intolerant.

But I'm still not joining her club. So there.

I Can't Believe Denise Handed Us the Keys

A few days ago, the usual suspects - meaning John and Greg and Terese and I - were spending a delightful afternoon visiting friends. After dinner, Terese and I were yakking away near a large picture window which looked out onto this pastoral scene:

Oh, sure, the skies were sunny and the grass green and all. Yada yada yada yada. But see the Kuboda ATV? Is that a thing of beauty, or what?! Terese and I looked at each other and didn't have to even say a word. We were hoofing it out to the lawn to check it out within seconds.

We both appreciated the appeal of this perfectly sized Terese and Julia vehicle; me because I'm, well, just me; and Terese because she is a wild woman on anything with an engine that resembles a four wheeler or a riding lawn mower.

Seriously.

So my friend Denise should have known better, really she should have. But she saw us admiring her very expensive present and innocently asked if we would like to take it for a test drive.

Foolish, foolish woman.

We had our backsides firmly planted in the seats before the poor thing had a chance to change her mind. Denise's husband gave us driving lessons.

Foolish, foolish man.

We immediately took off across the pasture. When the ride first began, I was all like la la la la la, smiling and waving and everything. Then Terese figured how to put that baby into high gear.

AAAAAACCCCCKKKK!

(She's actually a pretty capable driver, but don't tell Terese I said that.)

Before long, I forcibly shoved Terese over was behind the wheel. Which led to some animated discussions about MY driving capabilities by a person that I shall not name but whose initials are T-E-R-E-S-E. Pffft.

Terese? The barbed wire fence directly in front of us was abundantly visible and in spite of what it may have appeared, I was firmly in control of the vehicle at all times.

See?

Yes. That's John singing "....a THREE HOUR TOUR..."

We're speed demons, we are.

Ahh. What fun. It seemed fitting to end such a pleasant day with a perfect sunset.

As expected, I'm pooped out by yesterday's adventure - but it was worth it.

See y'all tomorrow.

Controlling Neuropathic Pain - Diabetes Self-Management: Good Advice For Us All

Feel like you've got a fire under your tootsies? Image found on Wikipedia

I thought this April 2014 article by Erica K. Jacques in Diabetes Self-Management entitled "Controlling Neuropathic Pain" was very good. Although she directs the information in the first few paragraphs towards diabetics, the bulk of the article is great information for any of us that deal with peripheral neuropathy. Take a look:

.......In part because of the unknowns surrounding the physical mechanisms of neuropathy pain, conventional drug treatments can be hit or miss when it comes to getting relief. You may have to be zonked out on pain medicine to get any substantial effect, and even then you may still feel pain. It can be hard to find the balance between pain relief and quality of life. However, we therapists have a few techniques up our sleeves for “tricking” the nervous system into perceiving less pain.

As a disclaimer, everyone responds differently to each of these techniques. You may have to try several approaches before you find one that works for you. The word “works” also carries some ambiguity, since none of these approaches is a cure-all for neuropathic pain. However, one or more of them may help you get your pain to a more manageable level, so you can go about your daily routine and spend more time living again.

The good news: None of these techniques will make your pain any worse – at least not in a lasting way – so what do you have to lose?

Heat

Most people find warmth soothing. When is the last time you didn’t feel relaxed in a warm bath or while lying in the sun? Warmth provides the body with a pleasant, comfortable sensation that might just be enough to provide some relief from neuropathic pain. The body only has so many sensory nerve receptors, so why not give some of them something nice to do for a change?

Heat can be applied in a number of ways. You can purchase a plug-in heating pad in almost any pharmacy; many pads have temperature controls to make them adjustable to your needs. Place the heating pad on the body part that needs soothing, taking care to place a layer or two of fabric (such as folded dish towel) between yourself and the heat source. Leave the heat on the affected area for a maximum of 10 minutes; remove it earlier if it becomes uncomfortable. (For more on applying treatments safely, see “Tips for Using Heat and Ice.”)

If you want to experience a spa-like treatment at home, you can purchase a paraffin wax warmer, which is also available at many pharmacies. This device is slightly messier and hotter than a heating pad, but using it can feel nice for your hands. If you use one, be sure to follow the package instructions and to check the temperature of the wax before putting your hand in it. Use a candy thermometer to ensure the wax temperature is no higher than 100°F, and continue to monitor it as you use the bath. Temperatures over 120°F can cause serious burns.

Another option – and the least expensive – is simply to use warm water. Again, make sure the temperature of the water is no higher than 100°F. Run your hands under the faucet, submerge your hands or feet in a basin of warm water for several minutes, or soak towels in warm water and wrap them around the affected area. Add some scented oil or shower gel to the water for an even more pleasant sensory experience.

Ice

In general, ice is not as soothing as heat. However, it does have the advantage of being an analgesic: It can provide a mild numbing effect, which can relieve pain. Ice is also anti-inflammatory, meaning it helps reduce swelling. This can be useful if your hands or feet are prone to edema (fluid buildup), which can increase sensations of pain. Ice may also be the key for someone whose pain does not respond to heat.

Using ice is as simple as going to your freezer: Fill a large freezer bag about halfway with ice cubes and seal it. Place a doubled-up towel over the area you are treating, then mold the bag of ice to the area and keep it in place for no more than 10 minutes. Some people prefer using bags of frozen vegetables such as peas, which are easy to shape to various body parts and can simply be thrown back into the freezer when done to reuse later. Just be sure to label your “cold pack” so that no one cooks it for dinner. You can also buy different sizes of reusable cold packs – filled with gel or pellets – at a drugstore and keep them in your freezer; having options can be helpful if you use ice frequently or for more than one area of your body. Continue reading here.

Recharging

How better to cap off a rest and recoup day than a nightcap on Greg and Terese's beautiful deck?

I've been a busy gal lately. Heading back to the couch. See y'all tomorrow. 

We Found "Where the Lilacs Still Bloom"

Yesterday, the sun was shining, the skies clear and a brilliant blue, and Terese and I were barreling north on I-5 in Goldie. What perfect weather for a mission. 

We love a mission.

Our destination was the Hulda Klager Lilac Gardens:

Photo found here.  Each year, thousands of visitors step back in time to discover the 1880's Victorian Farmhouse and country gardens that comprise the Hulda Klager Lilac Gardens. The national historic site is located 30 minutes north of Portland, Oregon and 2-1/2 hours south of Seattle, Washington at 115 South Pekin Road, Woodland, Washington 98674 (mailing address: PO Box 828, Woodland, WA 98674).  To showcase the site, the Gardens and historic buildings have been lovingly maintained by the Hulda Klager Lilac Society, a nonprofit volunteer organization. The Society fully funds the care and upkeep of the historical site from the proceeds of Lilac Days, dues and donations. With the help of our volunteers and members, the Society continues to carry on the work of growing and showing the beautiful lilacs including those hybridized by Hulda Klager many decades ago. Continue reading here.

We couldn't have timed our visit better. The gardens were fragrant and absolutely beautiful. 

After telling Terese that I wanted a picture of her smelling a blossom, she immediately stuffed some lilacs up her right nostril. Tsk. Can't take the woman anywhere....

 I found the history of the gardens fascinating.

In 1905 she began hybridizing lilacs and by 1910 she had created 14 new varieties. By 1920 she had developed so many new varieties that she decided to hold an open house each spring when the lilacs were in full bloom to share her efforts with other lilac enthusiasts. This practice caused her to become known as “The Lilac Lady.”.......Through the years, Mrs. Klager was been honored by many organizations for her work as a leading hybridizer of lilacs including the State of Washington, the Arnold Arboretum at Harvard University, the Federation of Garden Clubs in Washington and Oregon and the City of Portland, Oregon.

 Wouldn't it be great to have one of Hulda's lilacs growing in MY garden? I thought.

But then I read this:

I asked a garden volunteer if they had any of Hulda's hybrids for sale, thinking that my chances were slim to none, but to my delight there was one variety left. I snagged a Pink Elizabeth as quickly as I could. 

Please, please God. Don't let me kill my Pink Elizabeth. 

Terese was interested in different varieties, understanding that these were not developed by Hulda. 

Man. It took every ounce of self-control I could muster to avoid bringing home more than one plant. And who could blame me when choosing between all of these beauties?

We both chose our plants and stuffed them into Goldie. 

They fit perfectly. Terese's plant had one very sweet smelling bloom which made Goldie smell absolutely delightful. 

As we finished tucking our treasures into Goldie, we headed down the road in search of more flowers, this time tulips as we saw signs for a tulip nursery close by. 

I'd say our search was successful:

We were told by the staff that the peak of the blooms had been a few weeks earlier. How fabulous that must have looked. I thought the fields that we did see were beautiful.

So, I don't know why I repeatedly ask Terese to pose for pictures. I simply asked her to poke her head through the yellow tulip. But no. Being Terese, she would only consent to having her hands and ONE FOOT photographed.

I thought it was impressive that she could maneuver her leg up there for the shot. I tried but couldn't hike my foot up high enough. After our tulip adventure, we hopped into the car while smiling smugly. Our mission was proceeding even better than planned. 

But.

What we thought would be the easiest part of the trip - to find a little restaurant for lunch that wasn't a fast food place or a chain - proved to be the hardest challenge of all. 

Oh brother.

I won't go into the sordid details except to say that our smugness evaporated quickly. We waved at Hulda's lilacs as we passed them at least three times meandering through town trying to find the place the Google Maps insisted was RIGHT THERE. 

We settled for a sandwich at a bar and grill decorated profusely with moose. Not as quaint as we had hoped after sniffing heirloom lilacs, but it was a satisfying lunch. And I told Terese had we not stopped, I would have eaten my shoe. The BLT on sourdough was considerably tastier, I think. 

Our grins returned as we zoomed south. Ahhh. What a day. If you're in the Woodland area, and are lucky enough to visit during the three weeks (yes, they are open just three weeks of the year while the blossoms are best) think about stopping by. 

You can read more about the amazing Hulda Klager in the novel Where Lilacs Still Bloom by Jane Kirkpatrick. 

Don't Fall For This Scheme

This is the number he called from. I'm sure he uses several phony ones. 

John and I have had what seems like a zillion messages left on our answering machine that go something like this:

"This is an agent of the Internal Revenue Service. Please contact us immediately regarding your income tax fraud charges. You MUST call this number to avoid going to prison."

Oh, brother.

The voice is male and has some kind of accent.

"This is an extremely urgent matter. You will have serious consequences if you do not return this call! We will help you avoid going to jail."

Ah. Riiiiiiight. I'll just bet he's here to help me. He'd really like to help himself to a big chunk of OUR money. What a crook.

I'd ignore this obvious scam message if it was left once on our machine, but SIX? TEN times? The guy is relentless and with each message his message becomes more ominous and threatening. I call our local police department on their non-urgent number, describe the messages, and ask what to do. A woman sympathetically tells me that she is aware of several folks in our area receiving the same kind of telephone calls. Unfortunately, she says, schemes such as this one are almost impossible to persue but suggests that I visit this IRS website to learn more about this prevalent phone scam:

WASHINGTON — Aggressive and threatening phone calls by criminals impersonating IRS agents remain near the top of the annual "Dirty Dozen" list of tax scams for the 2015 filing season, the Internal Revenue Service announced today. 

The IRS has seen a surge of these phone scams in recent months as scam artists threaten police arrest, deportation, license revocation and other things. The IRS reminds taxpayers to guard against all sorts of con games that arise during any filing season.
"If someone calls unexpectedly claiming to be from the IRS with aggressive threats if you don't pay immediately, it's a scam artist calling,” said IRS Commissioner John Koskinen. "The first IRS contact with taxpayers is usually through the mail. Taxpayers have rights, and this is not how we do business." 

The Dirty Dozen is compiled annually by the IRS and lists a variety of common scams taxpayers may encounter any time during the year. Many of these con games peak during filing season as people prepare their tax returns or hire someone to do so. This year for the first time, the IRS will issue the individual Dirty Dozen scams one at a time during the next 12 business days to raise consumer awareness. 

Phone scams top the list this year because it has been a persistent and pervasive problem for many taxpayers for many months. Scammers are able to alter caller ID numbers to make it look like the IRS is calling. They use fake names and bogus IRS badge numbers. They often leave "urgent" callback requests. They prey on the most vulnerable people, such as the elderly, newly arrived immigrants and those whose first language is not English. Scammers have been known to impersonate agents from IRS Criminal Investigation as well. 

“These criminals try to scare and shock you into providing personal financial information on the spot while you are off guard,” Koskinen said. “Don’t be taken in and don’t engage these people over the phone.” 

The Treasury Inspector General for Tax Administration (TIGTA) has received reports of roughly 290,000 contacts since October 2013 and has become aware of nearly 3,000 victims who have collectively paid over $14 million as a result of the scam, in which individuals make unsolicited calls to taxpayers fraudulently claiming to be IRS officials and demanding that they send them cash via prepaid debit cards. Continue reading here.

While I felt this information was reassuring, and I was glad that I didn't fall for this scheme, still......being the weirdo that I am, felt a distinct need for retribution. I wanted to convey some kind of message to this extremely disgusting individual preying on unsuspecting and vulnerable targets.

So I called the criminal back on the number he provided. The conversation was one-sided, but I enjoyed it immensely. It went like this:

*ring ring ring ring ring* "Hello. This is the IRS......."

Me: Oh, no you're NOT. I'm calling to let you know that I know this is an illegal scam. I've reported you to the police and the IRS!

*click*

He hung up on me. The exchange was strangely rewarding. So I decided to do it again.

*ring ring ring ring ring* "Hello. This is the IRS......"

Me: Hey! It's me again, you CROOK. I've reported you to the police and the IRS and...

*click*

Hehehehehe. What fun. I wondered what would happen if I called yet again. 

*ring ring ring ring* "Hello. This is the IRS...."

Me: I think I'll just keep calling you to tie up one of your phone lines, you scammer!

*click*

I had plenty of time on my hands and nothing better to do. After another dozen calls - seriously, I had far, far too much fun harassing this bum - my calls were not answered but met with a click and then a dial tone.

I know that my paltry efforts to annoy this guy did absolutely nothing to deter him from continuing. After all, schemes like his have netted over $14 million dollars. Whew. But I hate the feeling that I'm being preyed upon, and to have the chance to tell this creep exactly what I think of him felt.....well, it felt really, really good.

So there.

If YOU get a threatening call from someone claiming to be an IRS agent, don't buy into the scheme. 

Equal and Opposite is a Hard Law to Follow

Sir Isaac Newton image found here. 

Today,  I'm thinking about Newton's third law: For every action, there is an equal and opposite reaction. 

Yeah.

Good old Sir Isaac certainly did not have autoimmune fatigue in mind when apples were dropping on his head and he was busy discovering the laws of physics. But his third law applies equally well for my personal Julia energy equation as it does for any other object:  For every day in which I expend significant amounts of time being IN MOTION, I need equal amounts of time in which I need to provide a reaction which is the OPPOSITE OF MOTION.

Translation? One busy day needs another to recharge. If you're thinking that you've read multiple posts from me that address this same reality, you're right. And, if you're thinking that it's taking me forever to simply accept this absolute, irrefutable, and undeniable fact, you're also right.

Yesterday's shopping and lunch and pie outing with Bev left me spending a low key day at home today. And while I have grudgingly come to accept the need for rest, still I find myself grumping around feeling constrained by this reality. In order to replenish my energy stores, sometimes I need to just crawl in bed and sleep. But more often, I can recuperate by just hanging out at home with intermittent periods during which I put my feet up. When I'm sleeping, obviously I don't have an awareness of feeling frustrated, but when awake....ah. That's the time that even after an entire decade of life modifications to accommodate Sjogren's syndrome, I still more often than not find myself still resenting the need to rest.

But there's no way around Newton's 3rd. None at all. The only thing I can do to balance this law of physics equation is cave to my body's requirements which means to simply rest. But - rest is boring, let's admit it, and being bored is a very dangerous frame of mind for me since it easily can lead me down a rabbit hole of self-pity, thinking wistfully of pre-Sjogren's days, and just wallowing in generalized crankiness.

This is not an enjoyable experience.  Pitching a fit only digs a deeper hole into my energy deficit.

Bummer.

Yes, I'm a slow learner, really I am. But after ten years I've developed a weirdo strategy that with some frequency keeps me from teetering head first into the dreaded woe-is-me energy sapping black hole. It's a two part plan:

First: I STOP.

My initial necessary action to pull myself out of a gloomy void is to quickly bring an image to mind. I visualize anything that will indicate a need to STOP dwelling on negative emotions. I imagine various things, such as a giant vivid stop sign, or sharply reining in a horse, or hitting the brakes on Goldie. Sometimes I imagine myself grabbing my Bratty Inner Child Julia and forcibly restraining her. BICJ is a real persona, people. (I know. It's weird. But you guys already know what I'm like.) She's actually pretty entertaining on the occasions when I unleash her in a bakery during a chocolate cake craving. But more often than not, BICJ drives behaviors that I would be far better off avoiding. Throwing tantrums because I have Sjogren's syndrome is one of her favorite things, so imagining myself neutralizing her in a bear hug is strangely therapeutic. And weirdly comforting.

Second: I FOCUS

Once I have my inner child secured, I imagine dragging her physically back into the immediate now, even if she's kicking and screaming and dragging her heels.

How's that for an interesting mental picture?

I know all too well my inclinations to dwell on the past and better, healthier days which inevitably leads to feelings of loss. While I'm not always successful, willfully placing my consciousness squarely in the present moment is a valuable tool to lighten my mood. I look around and take stock:

Am I in a safe place? Yes.

Is there a watertight roof over my head? Yes.

Do I have food available to me? Yes. Far too much, as a matter of fact...

Is my pain moderately controlled at the moment? Yes.

You get the idea. I encourage myself to follow this line of reasoning as far as I can.

Do I have a cozy place to rest? Yes.

Do I have a snuggly schnauzer to nap with? Do I EVER. 

Did I notice that the flowers that I bought for Easter two weeks ago, are still unbelievably beautiful? Hey. They are!

Isn't it amazingly awesome that somehow I helped create a daughter that can do extraordinary things that I could not possibly have done even in good health? Amen, sistah!

She's knitting a honey bee blanket that's perfect on BOTH SIDES. Whoa. 

Do I have something to look forward to? Heck yeah. Terese and I have an outrageously fun day planned tomorrow.

Breathe, Julia. Just breathe. Do you realize that the past is gone and the present doesn't exist yet? And that all you have right now is this moment in time? And that all you have to do to deal with autoimmune fatigue is quit acting like your Bratty Inner Child Julia and rest? Life at this particular moment in time is good. That's all. Awww shucks. I guess so.

Whew. Glad I paid a moderate amount of attention in my physics classes.

Canceling Calories

Mmmmm. 

This is another one of those FRIENDS ARE GOOD MEDICINE posts. And they truly are. I was still feeling a bit sleep deprived and in need of some attitude therapy when my friend Bev called yesterday. What great timing she has:

"Hey, girl."

Well, hey Miss Trouble! What's going on?

"I can't talk real fast so if I sound weird that's the reason."

Oh?

"Yes. I'm lying down with a slab of cucumber on each eye. I read somewhere that will make the bags under your eyes look better. And if I talk fast I jiggle my cukes."

Bev's tone did sound unusual for her. She was speaking slowly and enunciating every syllable. Which is strange because usually she is one of those people that talk so quickly that I can hardly keep up with what she's saying.

Let me know if it works. My bags are bigger than your bags.

She snorted with laughter.

"Dang. Now you made me lose a slice." .::muffled indistinguishable noises::. "Ok. I'm back. It's hell getting old, isn't it? My eyes were never baggy when I was young. Hey. You want to do lunch today?"

Sure! 

"Are you ready to go anytime soon? I just need fifteen more minutes with my beauty treatment here."

I glanced at the clock. It was 11am.

So I'm dressed. But my hair looks like heck and I don't have a bit of makeup on.

"Well. Let me tell you something. I've been meaning to tell you to dial back on the hair and makeup thing lately."

Oh, really?!

"Yes." There was a momentary silence. "Lost another cucumber. Now what was I saying? Oh, right. Girl. I'm getting so tired of fighting off all the men when we go out together in public."

It was my turn to snort.

"We're just so beautiful, you and I. I mean, haven't you noticed the crowds of men following us wherever we go?"

Um. Actually, no.

"And then I have to tell them all that we're both married and that they have no chance whatsoever with us. And then they're all disappointed."

Ah. So that's what has been happening....

"Yes. It's pretty inconvenient."

 Hmm. I can see how that could happen. I'll quit using glitter eyeshadow and false eyelashes. 

Laughing, we chose a restaurant and an hour later we were yakking over our salads. Bev sat back in the booth and scanned the laminated pie menu standing prominently at the end of our table. 

"So. Are we being good today? Or are we having pie?"

Girl, I groaned. I'm really trying to be good.

She cackled. "I am too. But did you know..." she leaned conspiratorially toward me, "if we split a piece, it cancels out the calories?"

I did NOT know that! See, this is why you're such a good friend. No one ever told me that before!

"I know. I am a good friend. What kind should we get?"

As long as it doesn't have dairy, I love 'em all. You pick. 

"How about this? We'll each write down three kinds of pie we like on little pieces of paper. Then we'll mix them up, close our eyes, and pick one."

This woman makes anything into a game. Life is never dull when you're with Bev. Strange, sometimes, yes....but never dull. She produced a pen and paper from her purse, ripped the paper into six pieces, and we scribbled one pie choice on each.

"Hey. Don't look at what I'm picking. It's a surprise." She flipped the scraps over, mixed them up, and closed her eyes. 

"Ready? I'll point to one random paper, and that's what we'll have." She squeezed her eyes tightly closed and poised her index finger over the table, then punched. "What did we get?"

Nothing. You missed the papers altogether. And quit laughing, or you'll miss them again!

She closed her eyes and stabbed the table with her finger again.

Woo hoo! Marionberry! 

Pie is a very good thing, but even better with good friends. AND when you share a piece, the calories don't count. 

Bev said so. 

Seriously Short of Sleep

Zzzzzzz.........

Do any of y'all have trouble sleeping? Yeah....rhetorical question. I KNOW that insomnia runs rampant among the sjoggie population. The Sjogren's Syndrome Foundation thought the issue important enough to create a patient information sheet on sleep.

I had real issues trying to get a good night's sleep last night and guess that I got all of about three hours. Which left me so foggy that I couldn't remember on which side of an envelop to stick the postage stamp. Honestly.

So I know that there's a few basic things that I need to do to weigh the odds in my favor of getting some quality shut-eye tonight, and one of the biggies for me is to completely avoid caffeine. Caffeine not only makes me wired, which actually I kind of like during the day but not so much at about two in the morning, and it also makes my restless leg symptoms flare in a major way. In years past when I found myself wide eyed in the early morning hours, I could pop a Benadryl tablet and be zonked within a half hour. But those days of allergy-medicine-induced sleep are over ever since my neuropathy and restless leg symptoms began because these drugs increase my symptoms.

Tonight, I think I'll draw a warm bath and dump in some epsom salts, then soak until my toes wrinkle. And then will turn off my computer and phone, put on some fluffy jammies, and will open up a good book.

Better do the trick. I'll keep y'all posted.