Whole Face? Never Again.

Who are they kidding? This is TORTURE. Misleading photo found here. 

Yesterday, as per my usual routine before traveling, I presented myself to an unfortunate young lady at the nail salon. Poor thing. I asked her to give me a pedicure, and also to wax my eyebrows, both of which are rather difficult tasks.

They would be less problematic if I were willing to present myself at the salon more often. However, there I was, and she was very diplomatic and capable.

How often you moisturize? She asked delicately as she began filing away at my rough heels.

I pretended to be very very engrossed in my magazine.

She tapped me on the left big toe. Lotion. Every day, she said then playfully wagged her index finger at me.

I promised that I would.

Then she indicated that I should follow her to a partitioned-off area. I carefully followed her, walking in that peculiar way one does when one's toes are divided by pink foam toe dividers and freshly enameled.

I would call it a waddle in my case. Others may do it more gracefully.

As I lay back on the table, my technician leaned over my face and scrutinized what she saw.

Just eyebrow? she queried.

Yup.

You no want the rest hair removed?

What?

Here. Look. She took a makeup brush and dusted my face with powder, then handed me a mirror. I think maybe you need whole face.

Whole face? I scanned my powdered face in the mirror under bright overhead lights.

Ewwwwww. Why. Hasn't. Anyone. Told. Me. That. I. Have WHISKERS?!?

I looked with astonishment at the tech, who matter-of-factly took the mirror from my hands and firmly stated, Whole. Face.

So I had my first experience with a WHOLE FACE waxing. I'll spare y'all the gruesome details, but for those who haven't had the pleasure, this involves a great deal of hot, sticky wax being slathered everywhere on your face. Everywhere. Then there's something about fabric being stuck to the wax, and followed by a tortuous motion in which the fabric and hair is RIPPED OFF YOUR FACE. I anticipate having recurring nightmares about the whole nostril thing.

:: shiver ::

I considered bailing on the whole experience about a third of the way through, but decided that having part of my face looking really stupid would actually be worse than having all of my face looking stupid.

I can't explain my logic.

About an hour later, stunned, I waddled out from behind the partition, still sporting the pink toe foam thingies, but also a bright red face which although thoroughly coated with soothing oil, was (with the exception of perfectly sculpted eyebrows) completely hair free, but looking as cherry-red as though I had fallen asleep under a tanning lamp. My skin burned and stung and prickled from hairline all the way down underneath my double chin.

I paid in a daze, and left hoping that I wouldn't meet anyone that I knew on the way home.

Guys. It's going to take a massively life changing and important event and a two week recovery period to ever get me back on the WHOLE FACE table. Ever again.

This slapped-cheek look had better get seriously better before I show my face to the relatives back in the midwest. The little technician promised me that it would look just wonderful and so smooth! in just a few hours, but at this writing, I still look very red and very stupid.

Dang. I think my upper lip had all of the nerves pulled out with the hairs.

I always get these bright ideas before I travel. I seem to recall one particularly disastrous episode of Julia-Pre-Travel Stupidity when I thought I wanted, no - couldn't live without - blonde highlights. The day before I left on vacation.

Terese made a special trip over to the house afterwards to gaze on my blonde-ness in speechless, um, admiration for that particular event. After which I made a screaming trip back to a different hairstylist to MAKE IT ALL GO AWAY.

Sigh.  Ice packs. Cold water compresses. Concealing makeup, if all else fails.....

Terese: I can hear you laughing all the way over here. Just remember that you have to be seen with me in public for the next two weeks. So quit.

And no wearing your I'M WITH STUPID t-shirt this time.

I'm a Swinger

Over the past several years, my body has changed.

With the diagnosis of autoimmune disease, that's not earth-shattering news. And then there's the whole aging thing. Bleah. Let's not go there today.

So aside from all the wah wah wah symptoms that I've talked about over the last few years, there's one that's been sneaking up on me over time. Or at least, it's taken me several years to acknowledge what it is.

My body feels slower, sluggish, older. Autoimmune fatigue, among other unidentified things, has caused me to lose that bounce in my step that I used to take for granted. My body doesn't skip. It can't trot, or jog, or jitterbug. If I tried, I'd end up gasping for breath, slimy with sweat, and and regretting that I even tried. I feel a heaviness that has nothing to do with numbers on a scale.

But I've also come to realize that there's a few places where I can kick off those cement boots that seem to have been glued to my feet.

When I wade into a swimming pool and sink into the water, I finally feel....light. Floaty. As if I could go anywhere or do anything. I just lay my head back on the surface of the water and just effortlessly drift. It's a great place, and a wonderful way to feel almost as weightless as I do in all my dreams in which I just stretch my arms up to the sky and glide away with the wind.

Ah, but there's other ways for me to find that flying sensation in other places than a chlorinated pool.

I've become a swinger - yep. I have found that when I plop myself into my wonderful hammock swing I can capture that same floaty, effortless, gliding feeling. I could - and do - spend hours there, just swinging and gliding and gently bouncing with the wind. I love it so much that, in fact, I have two swings now. John attached my other, newer swing onto a branch of our flowering plum tree. This swing needs no spring like my hammock, but the natural sway of the sturdy branch to which it's securely tied provides all the glide and float that I could ever want.

In the shade of my favorite tree, in my own little patch of green living things. What a place to re-discover my freedom.

Over Hill, Over Dale, as We Hit The Dusty Trail....

Public domain image by Paolo Neo

So THIS is why I love traveling back to the midwest.

Did I mention that John and I and Terese and Greg are heading off to see the relatives? We're going to be visiting my parents, and John's mother, and everyone else inbetween. It should be a great adventure, as these types of trips always are. Greg and Terese are great fun to travel with and after several outings together, we all slip into vacation mode together easily.

A rare thing, isn't it? To be able to travel effortlessly with another couple? We're so lucky. Hm. Wonder if Greg and Terese feel the same way about things.....

So. Back to my story. We've been booking our hotel reservations, and wanted to stay one night in a rather remote location. There weren't many hotels to choose from, and judging by some of their websites........well, let's just say only one appeared to be a possibility.

Now, I'd have different hotel standards here if I were a snowmobiler, or a hunter, or outdoors-y kind of adventurer. But we just wanted a clean, safe, comfy place to spend one night as we continue our tour, which left us with one hotel. After exchanging several voicemails, I finally was able to speak to the owner.

(Insert name of northwoods-y place here) Hotel, how may I help you?

Oh, great! Finally a real live person!, I babbled.

Patient silence.

Right. Um, we were looking to book two rooms for one night. Would that be possible?

Sure. But......here's the thing: Actually we are closed until the hunting season starts. The hotel, the restaurant, everything.

I'm not following you here. You're closed?

Yes. But here's what we could do for you. I'll get two rooms ready for you. I'll put a sign up on each of your room's doors with your name on it. The key to lock the room's door will be inside each room. You can just come on in, stay the night, and then when you leave, just lock it up.

Really?

Sure. I trust you.

( REALLY?)

 I signed us up for two rooms at a ridiculously low rate. Ahhh. Midwestern hospitality. There's nothing like it.

What could possibly go wrong?

Yeah, yeah, I know. Plenty. But that's part of the adventure, right?

The trip planning continues. I'll keep y'all posted.

Gynecology and Sjogren's Syndrome

Yep. I used the same picture yesterday. Read on to see why. 

I received an email from a reader after yesterday's post. Although she appreciated the information about new insurance options for those that have been denied coverage, what she really wanted to know was: Where can I get a copy of the article about gynecological aspects of Sjogren's syndrome shown in the picture?

The story can be found in the September 2011 issue of The Moisture Seekers, published by the Sjogren's Syndrome Foundation. Members of the SSF receive every issue. Joining is easy and can be done online.

The topic of gynecological aspects of Sjogren's is an important one, but one that is very poorly understood. Recently, the Johns Hopkins Jerome Greene Sjogren's Syndrome Center has established a clinic dedicated to the gynecological problems of women with Sjs. Here's a few excerpts from this excellent article, written by Thomas Grader-Beck, MD and Anne Burke, MD, MPH:

Vaginal dryness has long been recognized as a manifestation of SS. There are few studies that address this symptom, but they suggest that vaginal dryness is frequent among women with SS. About a third of pre-menopausal SS patients are affected by vaginal dryness; this increases to 75 percent in the postmenopausal period. While vaginal, oral, and ocular dryness may coexist in the same woman, their severity may not correlate. In many cases, the vaginal dryness may be more severe than oral or eye dryness. Vaginal dryness also may occur before the onset of oral and ocular dryness in women with SS. Vaginal dryness may help to identify Sjogren's patients who have the characteristic autoantibodies (anti-Ro/La) but lack eye and mouth symptoms. Along with vaginal dryness, patients frequently complain about itching (pruritus) that can be debilitating.
     Patients with Sjogren's syndrome have a high frequency of dyspareunia (pain during intercourse). In a study of premenopausal women, 40 percent with SS complained of dyspareunia in contrast to only 3% without SS. Postmenopausal women with SS also have a higher frequency of dyspareunia than their healthy counterparts. 

The article goes on to note that the mechanisms that cause vaginal dryness and the resulting problems are very poorly understood. Unlike the eyes and mouth, there are no glands which provide lubrication within the vaginal tissue itself.

Therapy is frustratingly limited to few treatments at this time, and include topical estrogens and vaginal moisturizers. Read this:

As of yet, there is no definitive treatment for the vaginal symptoms of SS. Since there is inflammation in vaginal tissues of women with vaginal sicca due to SS, the question arises whether women may benefit from anti-inflammatory therapy, in particular in the premenopausal period. There currently is no information available in this regard. 

The Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center has initiated two studies to better understand this difficult issue. You can read more about the Johns Hopkins Center and it's ongoing studies here.

New Insurance Option

September's The Moisture Seekers edition is, as usual, jammed full of great information. It's published by the Sjogren's Syndrome Foundation and is only one of the benefits of becoming a SSF member.

The article entitled The Pre-Existing Condition Insurance Plan - New Coverage Option for the Uninsured in this edition is particularly interesting. It provides the details for the new Pre-Existing Condition Insurance Plan:

This transitional program is available for children and adults in all 50 states and the District of Columbia who have been locked out of the health insurance market because of a pre-existing condition........To qualify, you must: be a citizen of the United States or reside here legally, have been without health coverage for at least 6 months before applying, and have a pre-existing condition or have been denied coverage because of a health condition. For more information, including program benefits, eligibility and how to apply, visit www.pcip.gov. There is also a Call Center for the Pre-Existing Condition Insurance Plan. The Call Center is open Monday-Friday, from 8 am to 11 pm ET; dial 1-866-717-5826.  TTY users should call 1-866-561-1604. 

ZZzzzzzzz......

........Catching up on sleep.

See y'all tomorrow. 

Don't Be a Birdbrain, Girl....

All right, Miss Bev-who-USED-to-be-a-VERY-GOOD-friend:

First off, I'm jealous. Yes, I am. Of your cuuuutttteeeeee chicken coop and the fact that your husband supports you in your fowl hobby. (har har).

AND the fact that you have now trained your little brood to come running and ask for you to pet them. Chickens wanting to be handled? Go fig.

But, really. Girl. I could probably put my envy of your new chicken-y hobby aside, but if our friendship is to continue on any basis whatsoever, SOMETHING MUST STOP.

You know what I'm talking about. Yes. I'm referring to yesterday's telephone incident.

So it's bad enough that you completely obliterate and smash my pathetic Bejeweled scores on Facebook every single stinkin' week. But the fact that you CALL ME TO GLOAT about it is......just plain ornery, missy.

There I was, minding my own business, driving Goldie down to do volunteer work at church, (Can you see my halo? It's there. I'm sure.) when my cell rings. I pull over and grab the phone from my purse only to hear maniacal laughter on the other end of the line, which of course could only mean one person is calling: Bev.

"Heeeeyyyy!! I don't suppose you noticed WHO IS AT THE TOP of the Bejeweled scoreboard, did you?"

Grrr.....

"Why, it's BEV! Imagine that, girl!" Cackle cackle cackle! ::click::

Hm. She has chickens AND cackles? Coincidence? I think not.

Woman. Watch it. I'm gunning for you. Seriously: BRING. IT. ON. This week's Bejeweled trophy is MINE.

It's Not Bad For Me

So, I had a craving for pie today. As usual. But I determined that I would bake something seriously less wheat/fat/sugar -y.

Here's what I came up with, very loosely based on a Weight Watchers recipe:
In a large bowl mix:

• one tablespoon olive oil
• two tablespoons real maple syrup
• one teaspoon salt
• one eighth teaspoon freshly ground black pepper
• three quarter teaspoon cinnamon
• one eight teaspoon nutmeg

Add:

• one large sweet potato chopped into one and one half inch chunks
• one cup coarsely chopped sweet onion
• one cup peeled and coarsely chunked carrots
• one apple cored and coarsely chopped 

Coat fruit and vegetables evenly with sauce. Turn into a casserole dish.
Bake uncovered at 375 degrees F. for about an hour, or until vegetables are lightly browned and potato fork tender.

I served this as a side dish alongside baked chicken, and mmmmmmmmm. What a lovely, surprising combination of sweet and savory flavors.

I have to say that at least for the moment my rolling pin is safely stowed away.

I know that many of my readers are far better cooks than I and I'm calling on them: improvements? suggestions? other sweet potato recipes? Love those sweet potatoes AND love to hear how others cook them.

Just Do It

I love my newest additions to my fake pumpkin collection. I saw one in a display but couldn't find them anywhere else in my local craft store. I nabbed a passing employee and asked her about them.

You can't buy our display pumpkin. You have to make one yourself, she said.

Rats.

Oh, it's easy. Just take this grapevine pumpkin and put these multicolor lights inside.

I picked up a twiggy looking pumpkin and gingerly tried to carefully thread the brown wire and amber colored light set past the curved vines.

No, no, she said impatiently. You're trying too hard. Just grab handfuls of the lights and stuff them in there. You can't plan it. You just have to do it.

So I did.

I sat back to admire the effect and was amazed that it was so simple.

I suppose there's some profound life lesson in the craft store employee's advice, hm? That the pumpkin and the lights are a metaphor for life: to be successful one must seize the raw materials for happiness and thrust oneself headlong into the twiggy future....

Nah. Sometimes a pumpkin is just a pumpkin.

Julia's Cloak of Invisibility

Image found on Gizmowatch here. 

After I was forced to quit working many years ago, I have watched others with disabilities closely. I guess I can't account  for my interest which was greatly piqued after I was officially declared disabled.

I try my best not to appear to stare as someone buzzes past me on a scooter, or walks by with a noticeable limp, or is pushed along in a wheelchair. But I can't seem to contain my curiosity. I note with some anxiety: Do they appear happy? Well adjusted? Are they with friends or family? Is their life with a disability meaningful?

As if I could tell by judging outward appearances.

But I still want to know since I feel a kinship with them.  I AM disabled, too. Every time that I see a person with disabilities that appears to be confident and happy, I am encouraged that I can be that way as well. I need ongoing, concrete, living, breathing proof that a positive life exists even when our bodies function less than perfectly.

How will I, a disabled person, appear to others as time goes by? Will I be forced to swallow my pride and hang a blue and white tag from my car's mirror? Will the time come for me to use a scooter? Will my joints become so affected that my gait and the use of my hands will be so compromised that it will be obvious to others? I hope against all hopes that I won't. But I know better than to foolishly think that I can predict the course of my disease.

If my body's deficiencies become obvious to others, what image, what perception of me and my disability will appear? Will others who are in early stages of their disease look at me and see contentment and purpose?

If, in the future, the invisibility cloak that hides my illness is removed, what will be visible then?

Autumn Seasoning

All righty, then, people. The seasons are changing, and y'all know what that means, right? It's time to collect all the summer flamingo stuff...

....and bring on the pumpkins and leaves and all that other fall-like stuff.

Honey? Honey? Where did you put all the fall decorating junk essentials? Oh, come on. They're around here somewhere. Don't pretend that you don't know where they are just because you have to bring all twentybaazillion boxes down from the attic. And then haul all the summer boxes back upstairs. Honestly.

It's time, really. The cooler weather is here, I see just a few leaves turning red on my maple trees, and besides. I'm sick of all the summer stuff. So what better reason to completely trash the interior of my house? And then spend the next three days re-arranging everything?

Honey? John? Where ARE you going?

::Julia rubs hands together briskly and rolls up sleeves::

OK. First things first. Let's put stupid costumes on the dogs. Lulu - I see you in a lobster look this year.

Howwwwwlllll! Whiiiiinnnneee! (Schnauzer-ese translation: Someone. Help. Me. Please.)

Oh, girl. It's SO you.

Maggie? Hm. I'm seeing a nautical, ocean-like theme here....ah. A shark? Yes. Definitely. Let's go with it.

Don't take a picture don't take a picture don't take a picture...

Oh, my, aren't you just the cutest thing? Don't say a word, honey. I know you love it just as much as I do.

Now, then. Let's move on. You'll never GUESS who I found in the Hallmark store - Ed and Al! Aren't they great? They were stuffed in with all sorts of other creepy Halloween stuff - pfffffttttt - but I think they're just ADORABLE. Someone must have put them in the wrong place. Gotta love these two.

Creepy? Are you KIDDING me? Who's my little birdie buddies? Ed 'n Al! Yes you are! Yes you are! 

I nestled them right in with those sweet little spiders. Awww.

Then I think.....we'll put as many pumpkins around the house that I can stagger out of the craft store with. I'll stuff 'em with lights...

....and stick them on tables and the fireplace.

Right-o.

Fake colored leaves and twinkle lights? Check.

Cattails and greenery? Check.

Ghosts? Of course.

And what would October be at my house without a zillion black kitty cats?

Boring. That's what.

Sjogren's Syndrome Foundation: Peripheral Neuropathy and Sjogren's

The Sjogren's Syndrome Foundation has published yet another of it's excellent patient education sheets.

Patient Education Sheet

___________________________________

Peripheral Neuropathy and Sjogren's 

The SSF thanks Julius Birnbaum, MD for authoring this Patient Education Sheet. A rheumatologist and neurologist, Dr. Birnbaum is Assistant Director of the Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center, Baltimore, Maryland.

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. 

For more information on Sjogren's syndrome contact the Sjogren's syndrome foundation at: 6707 Democracy Blvd, Suite 325, Bethesda, MD  20817   *800-473-6473*  www.sjogrens.org  * ssf@sjogrens.org *

Therapeutic Blogging

Awhile back, I participated in a health bloggers study conducted by two individuals from University of Arizona and Michigan State University.

I had completely forgotten about the study until yesterday when I received an executive summary from the study, which was brief but interesting.

The authors concluded the summary by saying, "Across the two studies, the findings appear to suggest that bloggers who write about their experiences with health conditions can obtain benefits, such as increased feelings of support and decreased uncertainty about health. Despite the findings from our two studies, we do not yet feel that there is enough research to make any concrete recommendations about health blogging. We would not recommend blogging any more or less frequently or trying to write any specific types of words because of the results from the project. The results of the two studies are based on trends and may or may not hold for specific individual participants. That said, we believe that blogging about health has the potential to be a valuable and rewarding experience."

I agree. Wholeheartedly, for a zillion reasons, all of which I shared in the study. Blogging has provided several positive influences in my life: in plunking out my posts every day, I am motivated to learn and share about this disease. My blog has provided a connection with a whole world of sjoggies, both across the internet and personally.

What I think the researchers missed in their conclusions, however, is the satisfaction that one gets from feeling as though one has accomplished something worthwhile. I am a nurse at my core. When this disease forced me to quit working, it left a gaping hole in my sense of self worth. I know, I know - I'm more than my occupation. That's fodder for an encyclopedia's worth of blog posts.

But when I began blogging and actually had a few readers, I began to feel somewhat less pathetic and useless.

I look forward to sitting down in front of my laptop and pondering each day's post. When John and I discuss the upcoming day's events, I love being able to say that I have a commitment. A deadline. Self-imposed, I know. And knowing that I can blithely inform readers that I won't be posting for awhile reduces any anxiety that these deadlines may have.

My sidebar contains several links to other sjoggie bloggers. Care to join our ranks? Just head over to any of the free blogging platforms such as Blogger or Typepad. Sign up, choose a format, and next thing you know, you'll be sharing your experiences with the world. If you have a blog that you would like listed on my sidebar, just let me know and I'll review it.

As we all know, Sjogren's syndrome awareness is sorely lacking. So by putting your experiences with autoimmune disease out there, you're not only helping yourself deal with Sjogren's syndrome, you're helping to fill a much needed void in autoimmune information.

Go get 'em, sjoggies.

Rain, Rain, Don't Go Away

I love this time of year.

In a recent discussion with a Pacific Northwest newbie, he commented that he was worried about the upcoming winter, having moved here from an abundantly sunny climate. "It's going to be months and months of clouds and grey and rain and YUCK. I don't know how I'm going to handle it."

Don't worry, I told him.

First of all, make sure you're taking your vitamin D supplements. I think vitamin D should be added to the water around here in the wintertime. We all could use a boost in the sunshine vitamin. Relax. It will be fine. Just light the fireplace, put your feet up, and grab a mug of cocoa.

But, gee. For someone like me, meaning a sjoggie, the Pacific Northwest is the perfect climate. Although I love the sunny summers, I have to be ultra vigilant about sunscreens and hats and not over-heating myself and blah blah blah blah blah..

But when fall rolls around, the temperatures drop, and we gradually see more fluffy grey clouds roll in and the rain starts to fall, my body says, yesssssssssss! I swear, with the first fall rain, I break out in a happy dance. In private, of course....... it's not an attractive Julia moment.

Fall and the cloudy and cool weather means that I can just pop out of the house without thinking. I can just grab the dogs and their leashes and head around the block without my dumb stupid hat. I put my rescue inhaler away because my asthma goes on hiatus as I breathe in cool, moist air. I don't have to spray or slather or otherwise apply sunscreen every single time I head outdoors.

When the rains begin in mid to late October, the air loads itself up with wonderful, refreshing, renewing moisture. And yes, all that moisture eventually falls from the skies, but I don't care. So what if all of my jackets have hoods? And I don't mind toting around an umbrella. It's a sjoggie HEAVEN around here in the fall.

C'mon October. Get here soon.

The Peanuts gang has a much better Happy Dance than I do. Enjoy. 

Yet Another Excellent Sjogren's Article

The New York Times has put together an excellent piece entitled Patient Voices: Sjogren's Syndrome, which includes video interviews of six sjoggies, one of which is male.

Go. Watch and read it here.

I've Promised Not To Tell

Very strange anonymous person picture found here. 

I  know that I'm incredibly fortunate to have found my latest rheumatologist, Dr. Young Guy.

Dang. I really, really wish that I could share his name and location with all of those that have requested it, but I'm not able to do that, and here's why.

I have discussed my blog with my doctors, and have asked for their permission to write about our appointments, with the caveat that I would never disclose their name or location. All have agreed, and some have even read a few of my posts. I can understand their reticence to have their name "out there" since we all know the issues that can arise from unauthorized personal information being circulated. Especially about physicians and other health professionals.

The few times that I have listed a physician specifically by name and location have been with their explicit permission.

I have asked my friends' permission to blab all about them and our adventures on Reasonably Well, too. I wonder if any of them regret telling me yes.....

(Greg? Terese? It's too late to back out now.)

Look: There's Another One!

Image by © Royalty-Free/Corbis

With Venus Williams' announcement that she has been diagnosed with Sjogren's syndrome, media coverage of sjoggies has exponentially increased.

Yesssssss!

It appears that her disclosure has spurred others to make their sjoggie status known:

Nina Rawls, widow of legendary singer Lou Rawls, applauds Venus Williams' recent statement regarding her diagnosis of Sjogren’s syndrome, which resulted in her necessity to drop out of the U.S. Open Tennis Tournament. Rawls herself was finally diagnosed with the same misunderstood autoimmune disorder two months ago. 

“After years of misdiagnosis, it was a relief to finally have an answer to the horrible symptoms. Although I had not planned on revealing my diagnosis, I realize that we need to bring as much awareness to the disease as we can. I’m so happy that Venus has started to bring this disease to the forefront. I hope to do the same,” says Rawls. 

Continue reading here, on PRWeb.

The Doctor Will See You Now

He's young. REALLY young. Image found here. 

I met my new rheumatologist yesterday. I told him that I was beginning to feel unwanted since my last two rheumys retired. He laughed and commented that he didn't plan on retiring any time soon, and judging from his youthful appearance, I would guess he's right.

It's hard work establishing a new relationship with yet another doctor. I showed up clutching a manilla folder holding several items that I thought would be useful in our discussion: a medication list, a laundry list of new symptoms and questions,  copies of a few medication studies to discuss, and a picture of my hands at their most red and inflamed.

After we shook hands and exchanged greetings, he acknowledged the folder in my hands. "Looks like you've come prepared, good! I'm prepared, too."

I blinked. What?

"I've been reviewing your chart. You've been with us here at the clinic for awhile, haven't you?"

Um. Yep, I sure have. Since.....

"2004. Wait, it looks like you were coming in with symptoms earlier than that.....I would guess 2003."

Yikes. He DID do his homework.

"I've had a chance to review your labwork and imaging studies as well as your medication history. Looks like we have a lot to discuss. It's a good thing we have a whole hour to get through it all and come up with our plan."

An HOUR?!?

He began by a thorough physical exam, palpating and auscultating and assessing and manipulating and reflex tapping and well, y'all have been through the drill, then rolled his chair up to the exam room computer. "Can you see the screen? Let's start by taking a look at your earliest appointments in rheumatology."

What followed was the most in-depth conversation I've ever had with a physician. I was amazed. Also slightly depressed after seeing the ridiculously long appointment list scrolling by on the computer screen.

Here's the plan that Dr. Young Guy and I came up with: We're going to taper then discontinue the use of two of my current meds - methotrexate and cyclosporine.

Why? I asked him.

"Do you think they're very effective for you right now?"

Let's see.....my hands hurt and they're getting worse....and now my toes and feet hurt like heck.....my energy levels are in the pits.....hm....I would say that would be..... NO.

"I don't think they're doing you much good right now, either. So we'll keep you on prednisone, and we'll re-start plaquenil since I want you on some kind of DMARD, but we'll gradually get rid of the MTX and cyclosporine. Then let's see how you are doing. If your symptoms flare after the meds are out of your system, then let's look at some other, newer medications."

Such as?

"Well, there's rituxan, for one."

Funny you should mention that....(I pulled from my folder a three page study which focused on the use of rituximab in Sjogren's syndrome.)

"Yes, I've seen that study. Rituxan can be very useful in severe Sjogren's. But before I prescribe one of these big gun meds, I want to be absolutely certain that it's appropriate. So I want to have you completely off these other meds before we consider it. And, of course, there's other drugs we could consider as well."

He sat back in his chair and looked questioningly at me. "Are you with me here? Have we got a plan?"

I sat quietly for a moment.

Well, now, I thought. This young man obviously knows his stuff. He's thorough and willing to listen to what I have to say. He came to this appointment after having reviewed my chart and diagnostics. He's congenial and actually asked what some of my hobbies and interests were. And after I answered, his response was that he LOVED pie. And rubbed his hands together gleefully.

A guy that loves pie? Obviously a gentleman with good judgement.

OK, I said. I'm in. But I should warn you, I'm not a happy camper when I flare, and I hope this doesn't trigger a whopper one.

"I hope not, too. I have a feeling that it won't, but should anything happen at all just give me a call or drop me an e-mail and I'll get right back to you. I think we'll be seeing a lot of each other." he said with a smile.

I think so too. He may be a keeper.

Hm. Next appointment: apple, pecan, or banana cream?

What's The Plural for Moose?

Thanks to Stephanie for sending me this wonderful footage of twin baby moose playing in a sprinkler.

Ahhh. Kids of any species are so cute!

Stephanie - you were right. This DID make my day.

The Gift That Keeps On Giving

Today, I'm scheduled to have an appointment with my new rheumatologist. I'll wait until tomorrow to put up a post about something seriously Sjogren's - like. It will be interesting to hear what he has to say about this cranky old body of mine.

In the meantime, can you handle another Terese/Julia story?

Hehe.

Remember the ACCESSORIZE/NECKLACE incident? No? Well. Let me refresh your memory.

I wore this necklace to church one Sunday, on the advice of my friend Susan, who thought I needed some accessorizing.

A rather attractive necklace, I might add. 

Terese, who misses NOTHING from her perch up in the choir loft, thought that my necklace actually looked like the one pictured below (which she actually took the time and effort to make) and wore it to my house a few days later. She flounced around for a whole hour waving it in my face before I noticed it:

Smarty pants. Yikes. 

As it turned out, a week after all that silliness, we celebrated Terese's birthday. With John and my friend Karen's help, we......um......embellished Terese's version of the aforementioned accessorized necklace, wrapped it up in a fancy gift box and presented it to her after she blew out her birthday pie candles:

I thought the birthday candle candelabra was an exceptionally tasteful accessory for the pie. 

Ooooo. Aaahhhh. Happy Birthday, Terese, you lucky fashionista!

Greg was happy the necklace was returned because he wanted his bottle opener back. 

I think our addition was pretty spiff. Can you see it? The lovely circular....um....plumbing hardware pendant?

Somewhere around here, a water faucet is missing it's handle, but we don't care. It was happily sacrificed in the interest of tasteful accessorizing. After all, fashion is EVERYTHING around our neighborhood. Sniff.

I expect to see her wearing this very fashionable and very special gift in a very public place VERY SOON.

Yep.

Like maybe next SUNDAY.

Real Perspective

In thinking about what happened ten years ago today, my paltry problems seem insignificant.

I'm taking a moment today to remember those who were victims of those horrific events. I'm also taking a moment to say a prayer of thanks for all those who were heroes on that day.

May God bless them all.





Image from the U.S. Library of Congress

Thank You For Your Awesomeness

Guys, thanks so much for all your helpful suggestions regarding my pie and pain issues. Y'all are the best.

My toes feel your toes' pain, Amy. If my toes could hug, I'd send your toes one.

I am definitely going to look into the anti-inflammatory diet, thanks Laura, and Jazzcat, and Annie. Can anyone recommend a specific author or book on this topic that's relatively recently published? And thanks for the reminder to get out my lavender - scented epsom salts, Jazz..

I'm also interested in the eating/emotions book recommended by Leslie, thanks. I think it's time for me to head over to Amazon. I'll bet I can find it there.

However.

Anita?

While I appreciate your sincere, kind, and sweet comments, I just want to point out that your most recent post, Missie Anita, just about sent me out the door and into Goldie looking for the nearest can of crescent roll dough, you naughty thing.

Readers, if you are NOT looking to explore an anti-inflammatory diet, get over to Aunt Nubby's Kitchen authored by the above Anita, and prepare to drool over her apple dumpling recipe.

Tsk, tsk. Two sticks of butter and a can of Sprite.

Honestly.

Where's my car keys?

::door slam::

Pain and Pie

Image of potentially delicious pie filling found here. 

It's abundantly obvious that I have fallen off the "eating healthily" wagon lately. Pies, cakes, ice cream, golly...the list could go on and on and on.

I was thinking about this situation last night as John and I were getting ready for bed. Coincidentally, I was also thinking about my upcoming appointment with a new rheumatologist, and I was making a mental list of all the things I want to discuss with him. The item at the top of the list: I HURT.

Of all the issues that I have had with Sjogren's syndrome, pain has not been a major problem previously. Well, that is until it's cousin, psoriatic arthritis, made it's appearance after which I definitely added pain to my issue list.

Initially I was hopeful that my medications would rein in my PA but after the spring and now summer have passed, it's evident that they're not. It seems especially over the past month that my hands, feet, neck and back have become increasingly painful, and I'm incredulous that my toes have become so problematic. Toes? Really?? I don't like this. Not one little bit.

I hesitate to take other NSAIDS such as ibuprofen on a regular basis after being cautioned by my pharmacist: Your prescription drugs can be very toxic for your liver. Don't add to it's problems by taking NSAIDS and don't drink any alcohol.

So as I lay in bed last night listening to John brush his teeth and wondering how a simple sheet over my feet could make my toes hurt, it suddenly occurred to me that I had been trying to self-medicate my pain, but not with NSAIDS or any other drugs. Nope. I was a regular user of something far more addicting and dangerous.

Pie.

There's nothing more comforting than a slice of pie. Or a home made caramel roll. Dang, with that kind of treat on the end of a fork heading for my mouth, all of my discomforts just fade away. (Well, that is until I step on the scale. Cringe.)

It would be lovely if I could walk out of my rheumy appointment clutching the prescription of a magic drug that will beat my autoimmune diseases into remission and will take away all of my pain. But I know that's not likely.

So what if I find that I just have to learn to live with pain? What then?

I know that there are others who have far more severe chronic pain than I do, and it's apparent that most of them aren't main-lining Crisco and flour and sugar in an attempt to make things all better. I think that I'd better learn more about what comfort measures are out there that don't include preheating my oven to 350 degrees.

Sigh.

I have a paraffin contraption that I dip my hands into, which does help a bit but only briefly. I know that swimming makes my hips and back feel better, but irritates my hands. Go fig.

It will be interesting to hear what my new doctor has to say. I'll keep y'all posted.

In the meantime, hm.....peach pie.....oooooooo.....

Humble Pie

I knew it was coming - the second I hit the PUBLISH button on the post entitled It's More Than I Can Handle. The one in which I blabbed only half in jest about my pastry prowess.

Ah, yes. I knew the minute that post hit the internet, all of my baking skills would go down the toilet. Because I would deserve it. So they did. Yep. Did you hear the flush?

And, of course, those skills were headed down the pipes on the weekend when I had invited several guests, all of whom love pie. Perfect, I thought. I'll really wow 'em.

Oh, brother.

So after assigning tasks to my minions, Karen, Sarah, and Sue, I started making pie. The apples were peeled and sweetened and spiced, and everyone waited for the perfect crust to appear to finish that caramel-apple pie.

I confidently began, but was aghast when my attempt turned out as a mealy, mushy blob. Sarah tried to salvage it, but it was too far gone. Just LOOK at it. It's even a weird color!

I determinedly threw out the offending stuff and began anew. I mixed and measured and started rolling out......and THAT batch was crummy as well. Grrrrr.......too dry. What?!? I knew that my ingredients were fresh and just fine. So obviously the problem was me.

Again, Sarah gave a remedial try, but to no avail. This batch at least made it onto a cookie sheet dusted with cinnamon and sugar. We munched on it as I wiped the perspiration from my brow and determined to try AGAIN. I don't give up my super powers easily. It was time to bring in the big guns - and use my mother's pie crust recipe. I dug it out of the recipe box and began just one more time. Karen was ready to throw in the towel, but she took one look at the fanatical crazed look in my eyes and resigned herself to washing one more load of dirty dishes - her minion assignment - although she couldn't resist laughing as I foggily chose mixing bowls far too small for the recipe. Three times. Sigh.

Ah, but the third time was the charm.

I also made a key lime pie, but it had a graham cracker crust. Graham cracker crusts are NOT authentic pie crusts. (Just watch my next one flop on a massively huge scale...)

The pie was delicious.

Dumb stupid pie.

FDA Issues New Alpha TNF Blockers Warning

This news item from the FDA caught my attention yesterday: The FDA has updated the box warnings for alpha TNF inhibitors to include an increased risk of infections from bacterial pathogens - or disease causing organisms -  Legionella and Listeria.

What's an alpha TNF inhibitor? It's a medication that blocks the tumor necrotizing factor found on molecules of the immune system and reduces inflammation and destruction of joints. These drugs are most commonly used in the treatment of Crohn's disease, ulcerative colitis, rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, plaque psoriasis, juvenile idiopathic arthritis, and other autoimmune rheumatic conditions.

Classified with other similar medications as biologics, alpha TNF factor medications include Enbrel (etanercept), Remicade (infliximab), Humira (adalimumab), Simponi (golimumab), and Cimzia (certolizumab pegol). You can read more about biologics including alpha TNF inhibitors here.

These medications suppress the immune system, making users more prone to serious, even fatal infections caused by bacteria, mycobacteria, viruses, fungi, parasites and other opportunistic pathogens - organisms that take advantage of a host's weakened immune system. Practitioners have been aware of this potential ever since their introduction in 1998, however the recent incidence of Legionella and Listeria infections have prompted this new warning.

Are you taking one of these medications? Read this information from the U.S. Food and Drug Administration:

Information for Patients 

• TNFα blockers can lower the ability of the immune system to fight infections.
• Patients should inform their healthcare professional if they are being treated for an infection or have infections that keep coming back.
• Patients should read the Medication Guide that accompanies their prescription for a TNFα blocker.
• Patients should contact their healthcare professional if they have any questions or concerns about TNFα blockers.
• Patients should report serious side effects from the use of TNFα blockers to the FDA MedWatch program, using the information in the "Contact Us" box at the bottom of this page.

As always, discuss your questions and concerns regarding benefits versus risks associated in the use of these medications with your physician.

You can read more about this FDA decision here and here.

Good Press

Me in my "Good grief, coffee! Start working this morning!" pose. 

It's been gratifying to see the numerous articles published recently about Sjogren's syndrome and Venus Williams. But we sjoggies don't mind that Venus is getting the lion's share of the attention.

We're just glad that Sjogren's syndrome is finally in the limelight.

I've mentioned before that the sjoggie community has been buzzing. The most recent take on the conversation has shifted from "Can you believe someone would publish such an inaccurate article?" to something like this: "Here's a really good article, for a change!" or "Hey, read this!" or "I liked this one.."

So here's my contribution to the new discussion: This from Medpage Today is my latest Sjs/Venus media recommendation. The article goes beyond a few pat phrases that can be seen everywhere about Sjs. Author Nancy Walsh has done her research and includes bits of information regarding diagnostics and types of useful medications, but best of all is her simplified explanation regarding the cells within our bodies that may be responsible for Sjs symptoms.

Here's an excerpt, but you can read the entire article here.

The disease is characterized by destruction of the exocrine glands, leading to excessive dryness of the mouth and eyes. 

But Sjögren's syndrome also is associated with symptoms such as debilitating fatigue and musculoskeletal problems that could seriously interfere with athletic performance. 

"It's my suspicion that it may have been the systemic manifestations like fatigue and joint pain that have been troubling her and that could be difficult for a person trying to function at that very physically demanding level," Robert Spiera, MD, director of the vasculitis and scleroderma program at the Hospital for Special Surgery in New York City, told MedPage Today. Spiera has not been involved in Williams' treatment. 

.........B cells are thought to play a crucial part in the development of Sjögren's syndrome, accumulating and becoming hyperactive in the exocrine glands and heightening immune antigenic responses.