Autoimmune Disease Changes Everything

I recently received a message on Reasonably Well's facebook page from a sjoggie who is struggling with the enormous changes that autoimmune disease has brought to her life, including the inability to work. She asked a simple yet very difficult question: ".....how do you find a new purpose for living?"

Here's a sampling from my long and rambling response:

Ahh. Finding meaning in our new lives with autoimmune disease..... it's so hard. To be completely honest, it continues to be hard. Yes, you're right -- I did struggle with being at peace with not working, but the actual decision to quit was easy to make. My body just refused to get up and going anymore. My brain and all logical thinking went on strike. It was abundantly evident that I simply wasn't able to carry on in a professional role, and so I quit my job. But now all these years later, I still need to readjust my attitude and deal with the sense of loss and change that never seems to be quite comfortable. 

I find myself constantly wanting to look backwards: "I USED to be able to do this; I did such and such before Sjogren's; When I was still working, I would....."

This is a strange habit that I fall into. At times it's weirdly comforting to know that even though my body and mind aren't cooperating right now, there was once a time when I could function at a much higher level. But then after a certain amount of wistful remembrances, inevitably I would become increasingly upset and sad about my current state of affairs, which is not particularly good. But that's the nature of this dumb stupid disease, right? The quality and characteristics of our health can change on a dime. In a minute, or an hour, or a day. Uncertainty about it all doesn't make any of this more pleasant. 

I'm constantly working on limiting the amount of time that I spend thinking about my past; instead I've been trying with limited success to look ahead. To make distinct efforts to plan something -- anything -- to look forward to. Even if it's as simple as setting up a phone call with a friend. I find that if I have ANYTHING besides a doctor's appointment to put on my calendar, then I can look at that one little thing with an expectation of positive result. 

I have found that writing my blog has provided a great deal of positive reinforcement for me; I'm humbled and glad that others find it useful too; but the truth of the matter is that the simple act of writing my experiences down and then just putting them OUT THERE is cathartic and helpful to me. Perhaps you might consider beginning to do an online journal at the least or -------- maybe start a blog of your own? Blogger and Typepad offer free platforms and simple tutorials for getting started.......... The world needs to know more about autoimmune disease and Sjogren's syndrome in particular! By increasing the number of our voices, awareness may be also increased.

Hang in there, girl. I really do understand what you're experiencing, and I wish that I had better answers for you. But know that I'm here.

Guys. I know that you have better answers and suggestions for this reader than I do. Share them.

It's Facebook Official: Prednisone and I are "In A Relationship"

Prednisone: To refill? Or not to refill? THAT is the question. 

Christine, authoress of Thoughts and Ramblings on Life, Love, and Health has written an excellent post describing her relationship with a drug that many of us know all too well: prednisone. (Can a person actually have a relationship with a chemical compound? You betcha we can. Especially with a drug as powerful as this steroid.)

Like many of us, Christine is reluctant to become dependent on immunosuppressants and immune modifiers to manage her disease. But because she's in tune with her body's signals and needs, she also knows when it's time to make use of some of those pharmaceutical tools that are available to us:

I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn't have to be the doctor's way or my way; the rheumatologist's way versus the integrative medicine practitioner's way, and it doesn't have to by high doses of prednisone versus nothing at all. It's about listening to my body and trusting myself. It's about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren's; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.

If you are a regular reader of her blog -- and I suggest it highly -- you know that when Christine penned these words she spoke from real life experience which makes her goals authentic and legitimate, not pie-in-the-sky.

Mmmmm. Pie.........

.::Blink::.  OK. I'm back.

But as far as defining MY relationship to prednisone, as much as I'd like to be able to quote Christine and say with honesty that I too feel able to completely trust my instincts about my health, I......well, I just can't. For a variety of reasons. Which is not to say that I think Christine is in error when she judges herself to be capable, I don't mean that at all. I am quite sure that she knows of which she speaks.

But I know without a doubt that it's very difficult for me to make assessments of my overall state of health and more importantly, what THIS is:  ".... a level of functioning that is sustainable and tolerable to me as an acceptable quality of life."  

What's sustainable? What's tolerable? And where does my state of being fall into that continuum? Even after ten years of dealing with Sjogren's syndrome and it's buddies, I don't know how to define what an acceptable quality of life is for ME.

I was trying to describe my varying degrees of tolerance to disease related stuff to my friend the other day, and this seemed to be the best example. I told her, "So when I feel really really awful, and I drag myself off the couch to go to the bathroom, I look in there and think, Oh, good. There's a toilet. After which I do my thing and then plop back down on the nearest horizontal surface. But when I'm feeling better, I can go into that same bathroom and say, AAAAACCCCKKKK! Where's the toilet brush and cleaner and mop and....!! Tolerating less than ideal housekeeping standards is easier when expectations of myself don't include doing any house cleaning at all.

I can expect that a tolerable quality of life would never include a fatigue/energy level that would produce a really disgusting toilet. But, unfortunately......I also know that there is a very strong likelihood that there will be flares in my disease activity, which mean that I would be forced to ignore the can of Scrubbing Bubbles and toilet brush sitting conveniently next to the toilet.

So when I'm feeling good, I have very unrealistic expectations of my long-term goals for my health, but when I feel absolutely crummy, the opposite is true as well: If could only take a shower and do my hair and get dressed without breaking out in a body-wide sweat, I would be a very completely and totally happy sjoggie. Seriously. That's all I want. Ever.

MmmHmmm. Riiiiigggghhhtt.

The periodic use of prednisone only muddles the situation further, because when I am cruising around on 60 mg, I can do ANYTHING. Just grab me as I go floating by and ask. I'm screaming around the house like: Let's plan the Christmas dinner menu for the next twelve years! I'm going to lose twelve bazillion pounds and be a size zero by next Thursday! Break out the want ads -- I'm going back to work full time. Tomorrow!

Yeah.

Which brings me back to the question: What would be the best and most therapeutic use of the drug prednisone in helping me reach that quality of life that I would describe as Reasonably Well? As opposed to feeling Reasonably Crappy?

If I could accurately define what Reasonably Well is, I probably could answer that question.

Dr. Young Guy and I were discussing this very thing on Wednesday. I found a fabulous box of chocolate truffles that were packaged with Fourth of July stuff printed on it. How seasonal is THAT? He made his token protest about me bringing treats but snagged it quickly.

What was I talking about? Oh, righto...

So after the candy hand-off, Dr. YG made a comment about my face. Which made me want to grab the box of truffles right back. Lucky for him, after a second I realized that he wasn't talking about my beauty or lack thereof, but rather what higher dosed long term prednisone was doing to the shape of my face. Right now I could be a reluctant poster child for the term prednisone "moon face". Yeah. I only WISH that I actually looked like the picture on my blog sidebar.....

So we talked a bit about how prednisone and other drugs have affected the long-term quality of life for me. I told him that in all honesty, I would say that I'm not satisfied right now. Because we still are not certain which drugs may or may not have contributed to my neutropenia, many of my meds were discontinued, and now are being slowly reintroduced, a month at a time, and with frequent CBC monitoring.

And, since some of those drugs such as Plaquenil ease joint pain and boost energy, I'm feeling their absence acutely.

Wah! I HURT! I told him. Which is when our discussion turned to balancing the use of certain medications which have significant side effects, with acceptable levels of disease activity.

Because of the kind of guy he is, Dr. YG looks to me for significant input into these types of decisions. And, at this point, I've decided that I am willing to put up with some chronic pain if it means that I can reduce the dose of prednisone (and hopefully the carb cravings and moon-shaped face and decreasing bone density) that I'm currently taking. I know that I can contact him at any time if I feel that I may change my mind at which point we could discuss increasing my dose.

And so here I am. Prednisone and I are in a very long-term relationship, but like so many others on facebook, this one is complicated and rather tortuous.

Marriage and family and friendship relationships? Pffft. Piece of cake.

Mmmm...... Cake.......

.::Blink::. OK. I'm back.

DRUG relationships? Now those are hard.

Lulu Wants a Shopping Cart, Too!

And now, just in time for the weekend, here's your therapeutic dose of CUTE:

Treating the Tootsies

Awhile back, Dr. Young Guy discontinued my Plaquenil, and now I'm tapering back on my prednisone.

Whew. I can really tell that my meds have changed. My bones and joints and muscles can tell that my meds have changed. I had almost (but not quite) forgotten what these aches and pains feel like, but they're back and I do remember.

And how. Crumb.

We may re-start the Plaquenil at some later date, but in the meantime I am re-acquainting myself with those symptoms that it tames: the overall flu-like and feverish feeling -- aka malaise -- and joint pain. It seems as though my feet get more cranky than usual as well.

So I popped a few ibuprofen and went shoe shopping with my friend Naomi.

Here's what we chose: a pair of sandals that I can wear all summer long, have great arch support, velcro adjustable straps everywhere, low heels, and are made of buttery soft leather.

Ahhhh.

They're not as overly long as they appear in this picture. The ends just stick up when I put my feet up on a chair. 

Yes. I really need a pedicure.

Lulu says she really doesn't need new footwear, thank you very much. She loves her leopard print squeaky shoe.

I would agree, girl. It's always good to stick with a classic.

Real Courage

A few days ago, the AARDA posted a link to this story about Lee Thomas, an amazing reporter who is dealing with vitiligo, another autoimmune disease. You can read more about vitiligo here.

Check out his inspirational story here.

It's a Bird! It's a Plane! No......it's........

Who is that mysterious water drop hiding behind her super cape?

It's........  It's.......

SUPER HYDRATING NIXIE!

Can I have your autograph, Miss Nixie??

Never fear, Cole and Amy. Nixie will be flying your way very soon now that Daughter #1 has finally finished sculpting her from wool felt.

Good help is SO hard to find.....tsk tsk.

Congratulations on creating my favorite super hero of all time!

Um. D#1? It's awfully hard to give Nixie away. But I'm going to be a really, really good person and ship her to her rightful owners anyway. So..... I was thinking....... Christmas is right around the corner and......Gee...... my desk looks so empty without her and......

What? What's that, you say? Why, YES! Yes, I'd love my very own Nixie! However did you guess?

Sjogren's Syndrome Foundation: Tracking Your Sjogren's Symptoms

The June issue of the always excellent Moisture Seekers newsletter by the Sjogren's Syndrome Foundation contains a real goodie this month -- this great tracking tool for patients. Check it out:

I Loved This

See the lady wearing the bib in this picture? That would be me. Up to my elbows in dungeness and king crab. And corn on the cob and potatoes. And oysters and shrimp....

What a day.

Hours spent with my kids and friends. Watched a guy in a lawn chair fly over my house at about 17,000 feet (I'll have to explain that one later). Mariners won their baseball game today.

Ahhh.

Resting up. See y'all tomorrow.

Capsaicin is Not Recommended For Dodo-Heads

WHY do I feel so compelled to share my dodo-head incidents with the whole internet world, hm?

Regardless of my motivation to blab, this thing is bigger than I am, so here goes...

As Madame President of the B.O.B. club, aka Bone on Bone, I've been experimenting with various over the counter pain remedies for my aching right knee. This particular dodo incident began when I spotted a bright red box in the pharmacy that promised in bright gold foil letters to alleviate arthritis pain using an all-natural primary ingredient.

I have to say that I was a bit skeptical about the capabilities of anything in topical form to reduce pain in a joint located beneath layers of skin and adipose tissue. But I have noticed that frequent use of ibuprofen or aspirin is upsetting my stomach lately, and decided to give this tube of cream a try.

So I tossed the thing into my shopping cart, and last night as I was hobbling around getting ready for bed, decided to try the stuff out. I perched on the edge of my bathtub squinting at the teensy print on the carton for directions. I read enough that I figured I had gotten the gist of things and tossed the cardboard aside. And slathered the white cream all over my knee.

As I washed my hands, I thought a bit about the name of the main active ingredient: capsaicin. Hm. I seemed to recall that this was the stuff in hot peppers that made them HOT.

Stupidly, I wondered......it doesn't seem to have an odor.....so does this stuff taste like jalapenos?

And STUPIDLY, I tentatively stuck out my tongue and licked the palm of my hand.

Yowsers! Yes, I decided, it most definitely did. Even though I had washed my hands throughly I could distinctly feel the sting and heat on my tongue.

I washed my hands again.

Then, in the same STUPID mode, I realized that I had to attend to some...um....biological needs, and as I finished, realized that even though I had washed my hands with soap and water that....

YOWSERS!

I'm not going to go into anatomical detail here but believe me, this was not a pleasant experience.

After yet another round of soap and water, I decided that I was finally ready for bed. And, as I pulled the covers up under my chin after smooching John goodnight, I......

Yes. Yet another STUPID.

Without thinking, (obviously) I rubbed my eyes.

I rubbed my eyes.

YOWSA YOWSERS!! Eyedrops.....where's my eyedrops?!....

After squirting roughly half a bottle of drops into my stinging eyes, I thought seriously about pitching the $14.00 tube into the garbage. But somewhere bouncing around in my head with all the stupid stuff, I vaguely recalled the reason that I even considered buying this product. I remembered reading this information from Johns Hopkins found here:

     Perhaps best known as the compound that gives hot peppers their “bite,” capsaicin reduces the amount of a neurotransmitter called substance P, which is thought to release inflammation-causing enzymes and possibly trigger pain impulses to the brain.
     The ointment should be applied to affected joints three or four times a day. It usually takes one to two weeks for pain to diminish, although up to six weeks of treatment might be required for maximum benefit. Pain quickly returns after capsaicin is discontinued. Burning, stinging, and redness occur in 40% to 70% of people, but these side effects usually diminish after several days of use.
     Over-the-counter products containing capsaicin include Capzasin-HP, Capzasin-P, Zostrix, and Zostrix-HP.

In other words, there's actual science behind the use of this product for non-stupid people. Well, now.

I think I am going to give it another try, this time using disposable gloves for each application. If I can manage to avoid any more yowsers incidents, I'll report back in a few weeks regarding it's effectiveness.

In the meantime, I'm going to try to take Carl Jung's words to heart: “There is no coming to consciousness without pain.”

Oh, hey. I've got the pain part of this consciousness-raising experience covered.

Investigate Information on the Internet

How many times have you scanned a Google search results page and wondered which of the zillion links listed were trustworthy and accurate? Me? Every single stinkin' time.

NIH to the rescue. Yesterday, the National Institutes of Health tweeted a link to this very good article titled HOW TO EVALUATE HEALTH INFORMATION ON THE INTERNET: QUESTIONS AND ANSWERS

Here's the bullet points, but head over to read the article in full:

• Any Web site should make it easy for you to learn who is responsible for the site and its information (see Question 1).
• If the person or organization in charge of the Web site did not write the material, the Web site should clearly identify the original source of the information (see Question 4).
• Health-related Web sites should give information about the medical credentials of the people who have prepared or reviewed the material on the site (see Question 6).
• Any Web site that asks you for personal information should explain exactly what the site will and will not do with that information (see Question 9).
• The U.S. Food and Drug Administration and Federal Trade Commission are federal government agencies that help protect consumers from false or misleading health claims on the Internet (see Question 12).

Amazing Eyes

I love infographics. Check out this one:

You can see a full-screen version here.

This One Wins

I felt so spoiled for my birthday yesterday.

I received several great birthday cards, but this one was just too funny. Enjoy, and thanks, everyone!

Relationships Are All About Balance

Image found here. 

Back in July 2010, I wrote a post entitled, "Have you lost friends when you acquired a chronic illness?" Even though I put up this post almost three years ago, it's still being read and commented upon. I think readers find this topic of interest because it seems that each of us experiences a change in the dynamics of our friendships once autoimmune disease enters the picture.

Here's my favorite paragraph from that post; a quote by Susan Milstrey Wells:

"Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance. We can't be sick successfully without learning to love ourselves, and when we accept our own limitations, we're much more likely to let those around us be less than perfect too."

What good advice.

Readers have left several very good comments on this post, and most seem to agree that those friends that stick with us through the difficult time of adaptation to chronic illness are precious and few. We miss those people who had previously been important in our lives when they dropped off of our radar due to the changes that accompany our disease. It hurts. Many feel as though the only way to maintain friendships with some people is to pretend that they didn't become ill; to ignore the elephant in the room with the word "Sjogren's Syndrome" painted on his back. Nothing to see here, folks......just move along....

A few months ago, this comment brought a slightly different perspective to the discussion:

"Have you ever thought about it from your friends' point of view? If you are often talking about your illness over and over, your friend may lose interest in hanging out with you. I have a friend who has a chronic illness who talked about her illness every time I came to visit even if I did not ask. I have my own health issues and don't sit and dwell on them. A balance is needed. Support and compassion--check. Codependency and pity for the martyr--NOPE!"

My first reaction after reading this was to bristle defensively just a bit. Me? Martyr? Dwelling on my health issues? Never.

Um. Well.....

After some thought, I realized a bit reluctantly that even though the writer was a bit harsh, there was an element of truth there: that friendship is definitely a two-way interaction, and if one of the two parties is hogging the lion's share (Mixed metaphors. Sorry.) of the attention and discussion, the relationship would definitely suffer.

There's no doubt that every one of my friends and family knew ALL ABOUT the latest hitch in my giddy-up. I talked about white blood cells and neutrophils and CBCs and isolation ad nauseum. To anyone who would listen, and even to those who tried not to.

Thank you, dear ones, who just smiled and nodded even though you had heard the litany of my trip to the ER at least a dozen times already. And then you tolerated all of my wah-wah-wah-ing about being bored and housebound and tired and....yadayadayada. You brought me goodies and books and  called and emailed. You were far nicer to me than I really deserved. This is why I love you all...

So this comment is a good reminder of what Susan Milstry Wells means when she says that we need "to strike a delicate balance between our own needs and the demands of our most important relationships..."

It's that balance. It's all about balance, isn't it?

So hard to do.

What was your reaction to this comment?

Hey, Dad! I Really Do Feel Better!

I was visiting with my dad yesterday, and after we discussed all of the Father's day festivities going on at his house (which I didn't attend because he lives a mere two thousand miles away from me, dang) he asked as usual how I was feeling.

And guess what?

I realized that I could FINALLY tell him that I was doing well. And be truthful.

Yessssss.

What a long time in coming. After my missing neutrophil incident about a month ago, it's been a long slow climb back to my previous energy levels.

And what an incident that was....

Every now and then I go onto my clinic's website to review my lab results, and this one from back then still gives me pause. See the line for # Neutrophils?

The one that is 0.01 when normal is 1.8 --8.30? I'm thinking the AA in the "flag" column actually means AaaOOOga -- AaaOOOga! Danger, Will Robinson! Danger!

Yeah. Like the robot from Lost in Space.

After this dandy little experience, I just kept plodding along day by day, nap by nap, until last week I realized that the plodding had turned into more of a stumble. And now the stumbling has morphed into something more like my usual gait; which is not fast and not particularly graceful, but overall gets me where I need to go.

Thank goodness. What a blessing to just be able to do simple things like hop into Goldie and go the grocery store, or accept a coffee invitation from friends without breaking out into a cold sweat simply from combing my hair. This level of ability isn't ideal and it certainly doesn't come close to my pre-Sjogren's state but by golly....... it feels like heaven to me right now.

Remind me of this post when I wah-wah-wah about anything less exhausting than the neutrophil incident willya, guys?

Cows Gone Bad

I simply don't know what it is that I did wrong.

I tried, really, I did.

I tried to show these critters what was appropriate behavior but somehow the message just didn't sink in. I failed miserably as a key figure in their character development.

I suppose that I should explain my despair.

This herd of mine -- cows, that is -- was given to me by my sister and brother-in-law many years ago. I'm sure that Mary and John's expectation for this group of plastic bovines were that they would graze peacefully in my back yard for the rest of their little black and white lives.

But no.

No. They have escaped the confines of our secure six foot fence at every opportunity. They leave for weddings, for showers, for birthdays, for bluegrass festivals, and for....well, just about anything that they can think of. They've decked themselves out in everything from pilgrim costumes, to wedding finery, to fully illuminated red and white Christmas lights.

Shocking. So to speak.

So their latest escapade took them only as far as across the street, but my goodness. This time they're setting a very bad example for impressionable young people at the gateway of their adult lives: high school graduation.

My neighbor Susan's son's high school graduation party is tonight, and John and I didn't notice that they slipped away and planted themselves right on their front lawn.

With balloons. And mortarboards askew. Wearing scandalous shiny beads.

We tried to corral them but they refused to come home saying that they were going to party ALL NIGHT.

Sniff.

What's a responsible cow owner to do?

I'm thinking I should send Pinky over there to talk some sense into them. But on second thought, this is the four foot electric pink bird that loves taking center stage in our Christmas light spectaculars each year. Hm.....he'd probably just plant his stake in the lawn right next to those naughty girls of mine.

It's hopeless. I knew it. Especially after they told me that after the night's festivities, they were just going to go looking for the next party.

Sob.

Is there a support group for owners of delinquent lawn ornaments? I wonder what "tough love" would look for a bunch of badly behaved bovines....

A Couple of Excellent Dads

It's almost Father's day, and what a great holiday that is. It's one of those that doesn't require a great deal of decorating or futzing around seeing as all of the dads that I know just want a relaxing day spent with their families. John got a lawn edger for this momentous occasion, woo hoo. And, he requests that we just hang around and LOOK at the lawn rather than work on it after catching up on everything with the kids.

Fine by me!

I'm sure that a part of this weekend will be spent here with his buddy Greg:

John and Greg love to sit on our front porch in the evenings, rocking, enjoying an adult beverage or two, and solving the world's problems. They're good at that. They're confident that they could fix any issue at all right now. Just ask them.

They love our porch because even if it's rainy or otherwise less than optimal weather-wise, they stay dry and comfy. Actually, I love to sit on our front porch too for all of the same reasons.

If the weather is really nice, this is their favorite spot:

I would concur. Especially on a clear warm summer evening when the stars are bright. Ahhh.

So the last time these two guys were perched on our front porch, deep in conversation, it seemed to me that they reminded me...... of someone......hm.

Last night it finally hit me: of course! I think when John and Greg are settled in comfy chairs and creating a running commentary about world events, they're dead ringers for these guys.

Image found on Muppet Wiki. 

OMG. Waldorf and Statler. To a "T"! Guys. You KNOW it's true.

The question is......which one is which?

Happy Father's day to all those wonderful dads out there -- John and Greg included. You two rank right up there with the very best.

Summer Breezes

We've had a few glimpses of summer recently, which left me wanting MORE MORE MORE!

With sunscreen correctly applied and wearing my hat, of course.

I realized that my perspective on summer is very different as a fifty-something mom than that of a young mom with a young child after reading this excellent post by Kristen of Sjoggie StAHMer: Long Summer:

My girly is a perfect human replica of a hummingbird. She's bright flashy beauty that flits from thing to thing in constant motion. I somehow have to find a way to stimulate and challenge her mind, help her get out her love of running and climbing and all around normal kid behavior for physical activity, and somehow manage to get us out of the house several times a week, while working around my flaring mess of a body.

I am grateful that when my kids were young, thankfully I was mostly able to keep up with them. Now that I am older and dealing with Sjogren's and company, I have the luxury of putting this dumb stupid disease first, unlike Kristen and other young parents who have to balance the needs of their families with their own health issues and concerns. And when summer rolls around and kids take a break from school, those needs frequently include lots and lots of physical activities.

Whew. I need a nap just thinking about it.

You guys are awesome. Seriously.

It'a a Delicate Topic: Vulvodynia

You can buy your very own lingerie from Kiss Me Deadly here. 

Even though his tweet was slightly snarky ("DOUBLE amazing" -- hoo, boy), thanks to @joereddington for tweeting the link to this blog post written by an amazing woman with invisible illnesses. Here's a few excerpts:

Diversity is More Than a Bra Size: What It’s Like to Be a Woman with a Disability in the Lingerie Industry by  Catherine Clavering of Kiss Me Deadly.

Of all my disabilities, the one that means I can’t wear knickers is probably the most blackly hilarious, when you consider that I run a lingerie brand for a living.

....I’ve got M.E/C.F.S (otherwise known as Chronic Fatigue Syndrome) which means I’m perpetually knackered, in pain, brainfogged, hypersensitive, migraine-y, sleep disordered, and grumpy. Wait, no, I’ve always been grumpy! I’m pretty certain the rest of them are symptoms though, plus a bunch I left out. It gets boring.

I also have I.B.S., which is as grim as you can imagine for a digestive problem, and Lichen Schlerosus, a painful genetic, auto-immune skin disorder of the genitals. In addition, I have vulvodynia (chronic and acute genital pain. all the forms of it, plus a few rare ones), and a hemophilia-type blood disorder called  Von Willebrands if you’re a mature, sensible adult (or “Von Willywotsit” if you’re me).

.......If you mention disability in lingerie circles, or fashion circles, or most of the western world, for some reason most people start talking about wheelchair access. But not only are people who use wheelchairs a small proportion of people with disabilities (< 8% in the UK), visible disabilities of any sort are the minority.

You might be saying, “But fashion is a visual industry, of course we would represent disability visually.” However, there are two problems with this:

Great, except when was the last time you saw any disability represented? Cora and I keep a tally of models of colour at trade shows, but neither of us has ever even asked if there were any models with disabilities. The one time I used one (shown above), I ended up in a fight with some of my retailers about it. The model herself said that most photographers like to either cover it up completely, or make a “thing” out of it.

If our idea of disability revolves around visible problems, I’m screwed. And not in the fun way. Ever bitched about the woman on the stairs in front of you going too slow? Or the one in the supermarket aisle who has just ground to a halt inconveniently? Or the woman who looks fine but is taking up a disabled seat on the bus or a parking space?

You can read this excellent thought-provoking and sometimes-humorous post in it's entirety here.

Vulvodynia, (persistent pain of the vulva, the skin surrounding the vagina) and one of the author's invisible disabilities, can also be associated with Sjogren's syndrome. You can read more about this and other gynecological issues in Sjogren's syndrome here, here, here, and here.

Also by Ms. Clavering and addressing an entirely different topic, read this if you've ever wondered how on earth women who wear designer underwear actually .... um.... attend to certain biological needs. Favorite quote: "Pros – fairly easy to do, though I suspect its easier if you’re relatively slender, or maybe hovering. Yes, you know what I mean. Cons – for gods sake don’t lose your grip. Or your aim."

Ok. Where was this information when I was looking at Spanx??

Road Trippin'

My friend Naomi called me yesterday. "Got anything going for the day?"

Nope. Same old same old.

"Want to go for a ride?"

Would I! Wow. What good timing.  I had been moping around the house wondering what to do between naps.

We hopped into her car and headed east into overcast skies and misty rain. What fun. We stopped at a cute little restaurant for sandwiches...

followed a historic scenic highway...

and made a new friend.

This unexpected outing was delightful! Thanks, Naomi. It was just what I needed.

With Friends Like These....

I promised myself that I would NOT write any more wah-wah-wah posts about my hair. Or lack of.

(Not that I wouldn't like to...)

But I just had to share what my supportive BFF Terese gave me to ease my hairstyle woes. She's so sweet, sensitive and caring. I just don't know what I would do without that girl.

The other evening as we were heading out for dinner, she handed me a pretty gift bag.

"For you!" she said cheerily. "Open the card first."

So I did. And here's the cover of said greeting card:

Hm. I knew this had to be related somehow to the incident that I refuse to wah-wah-wah about. I opened the card to read:

HAHAHAHAHAHA!

(She's right, actually.) Hey. Wait a minute......are you makin' fun of me, MISSY?

"Yes. Yes, I am!"

Sigh. What a friend. The innards of the bag were these lovely wigs, one for me, AND one for my follicularly-challenged husband.

Oooo. In Green Bay Packer colors, no less...

I have to admit, we both look really good with our new 'dos. From behind.

Oh, yeah. I like it. Just wait till I show up some Sunday in the church choir loft wearing her SWEET, SENSITIVE and CARING gift. As she's playing the opening hymn. While prancing around in front of the organ. So that she misses at least ten measures of music.

I'll sweet, sensitive, and caring HER.

Happy Barfday

Yesterday at about 2 AM I found myself in the bathroom in the position Bill Cosby demonstrates at 3:56 minutes into this video.

Oh, brother.

Unlike Bill, I can't blame alcohol on this really..um.... unpleasant experience, however. John and I had been out celebrating Greg's birthday with him and Terese and their daughter, and although the birthday boy and his buddy had enjoyed a few adult beverages, I had refrained since I was the designated driver. So I sipped on a Coke, enjoyed a fabulous prime rib dinner, laughed, visited and sang "Happy Birthday" as Greg blew out the candles on his birthday brownie.

What a fun evening.

So why was it ME -- the responsible I'm-driving-so-give-me-a-plain-old-soda person -- that was hanging out in the bathroom talking to the porcelain telephone in the wee hours of the morning, hm?

Walk a Mile in My Birkenstocks

Yeah. My birkies and I know what this feels like. 

When I receive letters like this, I realize how vitally important it is for us within the autoimmune community to support each other:

Julia,  Sjogren's is now ruling my life and I am not handling it at all well.  In the past, I was able to cope and do small things that interest me.  Mostly small things around my home such as changing a piece of furniture, lamp, etc., but my life is one big aching, hurting, burning, no smell, no taste "blob".  I really need some encouragement.

I'm sure that this person has family and friends that want very much to understand and help, but unless you have walked a mile in our shoes.......it's hard.

One sjoggie knows what another means when she makes this kind of plea for understanding and support. We know how discouraging it is to tell this person that, "If you only would exercise more," or "Have you tried (insert latest ridiculous internet cure-all)?" or "Just get a good night's sleep and you'll be all better in the morning," or "If you could lose a few pounds," or "If you could gain a few pounds," or "My cousin's best friend's neighbor has the same thing and they were cured completely by soaking in pickle juice on every other Wednesday," or "I think it's really all due to anxiety. Or stress."

And of course, there's the dreaded......

You. Don't. Look. Sick.

Aieeeeeeeeee!!!

We KNOW what not to say. We KNOW what a difficult and uncomfortable disease this is. We've been there and done that. Until we experienced this disease, we didn't understand either, not really and truly. But unfortunately, we do now. And that's why we all need to step up in our efforts to reach out to each other when things are tough.

I can tell this person that I really care that she's having a hard time of things, and I can also share bits and pieces of coping strategies that helped me over the rough patches. And hopefully she will know that I mean every word and do know about her pain, and am sincere when I ask for her to share her feelings of grief and loss when thinking of how her life has changed with the arrival of autoimmune disease.

I get it. WE get it.

How do you cope when faced with really challenging days in your disease? Who GETS it in your life?

Brilliant Birdie

I just can't seem to quit watching this talented little bird, and now his little song is hopelessly stuck in my head. Enjoy your Saturday smile:

Not Stupid. It's All I Ask

I'll bet y'all have been just waiting with baited breath to see how my latest hair saga ends.

(I know better. Just humor me here, guys.)

So I made a frantic hair emergency phone call to a really good stylist that I had used before, and she squeezed me into her schedule yesterday.

Thank you thank you thank you...

When I walked into her salon, she gave my hair the once-over then gave me a hug.

"Julia. I'm sorry. So, so sorry...."

I told her that all I wanted from this visit was to be able to walk out her door and not look stupid. That's all. I want NOT for someone to point at my head and comment about my stupid hair. I have no aspirations for anything better than that!

Bottom line? New very, very short hairdo. She had to snip away lots more hair to even things out.....There's a chunk in the back of my head on which the hair measures maybe ONE inch. How does that happen??!??

But, ah well. Life goes on. Hair grows out.

John thinks that I need a good hair tonic to encourage growth -- specifically a gin and tonic.

I'm thinking so too. Cheers.

Sjogren's, Scents, and Scents-ability

This little bronze girl was perched unexpectedly on a bench downtown. Flowers AND sculpture. Cool. 

My friend Naomi asked if I would like to join her in a milkshake outing yesterday.

What a silly question. I was out the door, firmly planted in her car's passenger seat with seat belt clicked into place within seconds of hanging up the phone.

Later as we were sipping our shakes and strolling around a quaint little shopping center, I noticed a wonderful peony bush loaded with blossoms. And after I returned home I hoofed it out to my backyard peonies, hoping that they too would be heavy with sweet scented flowers.

They were.

Oh my goodness. They certainly were.

I plucked an armful and brought them into the house, walking carefully since I had shoved my entire face into the bouquet.

Mmmmm. There's no scent like real peonies warm from the sunshine.

Aren't they beautiful? So soft and fluffy and HUGE this year.

Even though I had been inhaling so deeply that I could have had sucked several large flowers right into the depths of my lungs, (the scent of peonies is ALMOST worth the risk of an aspiration pneumonia) after that first intoxicating burst of peony scent, the quality of the flowers' perfume just kind of.....faded.

How disappointing. But unfortunately, this also was expected. My sniffer just isn't up to par ever since Sjogren's syndrome found it's way into this body of mine. You can read more about diminished or absent sense of smell related to Sjogren's syndrome here and here.

I hate this. Even though I sniff vigorously and repeatedly, the first hit of scent is always the most potent, and subsequent inhalations only deliver a muted and strangely changed fragrance. I feel as though I know that I am smelling something....I can detect a sweetness and heaviness that should also be accompanied by that wonderful floral bouquet but isn't. It's just weird.

I suppose that I'm fortunate to get to experience that first burst of scent at all.

Has Sjogren's affected your sense of smell?

A Facebook Page Done Reasonably Well

On the advice of a few readers, I've created a facebook page for Reasonably Well. You can find it here.

Why?

Um. Actually I'm really not sure, except that I thought it may be a good place for sjoggies to dialogue without me dictating the subject.

And because ALL the cool blogs do it. Hopefully this means I won't jump Reasonably Well right off a cliff....just because all the other blogs do it....

Hey. Notice that I actually have HAIR in the picture?!?

How Fast Will it Grow Out??

Here's a beauty tip: Don't even think about using these on your hair. You can buy your very own -- for CUTICLES, people -- here. 

..::facepalm::..

I may have to go back into house arrest.

And this time, it would have nothing whatsoever to do with neutrophils, or white blood cells, or anything even remotely health-related at all.

No. I would confine myself to the house for an extended period of time for this go-around because.......well, because.....it's a long story, people.

So my day started out innocently enough yesterday when I pulled into the parking lot of my hair salon, thinking that I was there for just a trim.

A TRIM.

After a shampoo, having settled into the stylist's chair and relinquished my glasses, I squinted blindly at my beautician as she and I discussed the terrible shape my hair was in.

"Fried. To a crisp." she declared.

 Yep. It is. I agreed.

"What HAPPENED to your hair?"

Um. I guess I've just ignored it for at least ten months now. I haven't had it trimmed or anything since my daughter's wedding last fall.

"Tsk." She held up a hank of my frizzled, slightly greying hair and examined it critically. "It's beyond hope. Best thing to do is to just cut it."

Ok. (Stupid. Stupid. Stupid. Stupid thing to say.)

Thinking that we were going to stay basically with the same style, I settled back into the chair and closed my eyes. As she trimmed and cut and snipped and combed, we chatted and after a bit, she stepped back and viewed the back of my head with satisfaction.

"Better. Much better." she declared.

MmmmHmmmm. I opened one eye and saw a blob that looked somewhat like my head. I am so blind without my glasses. Great. I closed my eyes again.

This was my big mistake. Seriously.

Because at that point, after combing a section of damp hair over my eyes, she made a decided SNIP. Before I could say a thing......I had half of a set of bangs. Where before had been chin length hair that I had spent the past several years coaxing along inch by inch.

Yikes.

"Sit straight!"

Ok. What else could I say?? Half of my hair was gone. There was no return at this point. I shut my eyes again and thought that at this point in what was turning rapidly from a trim to a full blown hair CUT it probably wasn't in my best interests to say something rude like, WHAT THE HECK DID YOU JUST DO?! OH MY GAWD! I HAVE NO. HAIR. LEFT!

Or who knows what she might do to my remaining hair?

It turned out that there was plenty that she could do to what was left of my hair. After what seemed like forever, she whisked off my styling cape and handed me my glasses.

"Ta Da! Now isn't that better?"

Um.

I was speechless as I stared into the mirror. This was not what I had expected when I naively put my frizzy head of hair into this woman's hands. The Julia that stared back at me from the mirror had.......bangs that were too short and sproinged crazily from the cowlick located in the middle of my forehead. And.......not much hair except for a straggly strand in front of each ear which was approximately the length of my hair when I foolishly sat down and ASKED this person to do this to my hair. Well, kind of this. Actually, I ASKED this person for a trim. This certainly wasn't a trim. It was.......indescribable.

She smiled with satisfaction as she looked into the mirror at us both and patted the weirdo chunks of hair by my ears. "I kept the length here. I think some longer hair here is better for your shape of face."

I paid the bill in a daze and drove home not wanting to look at myself in Goldie's rear view mirror. I pulled into the garage and bolted for the bathroom, where I looked with dismay at the carnage that had been inflicted on my head.

It was choppy. And uneven. And......felt like someone had put a helmet on my head since she had sprayed half a can of hairspray on my unusual new 'do.

I couldn't think of anything productive or useful to do, so I headed to the couch for a nap. Getting my overgrown awful hairdo transformed into an even more awful choppy weirdo hairdo was hard work.

Later I worked up the courage to text Terese and share my disastrous experience with her. And, being the supportive and sensitive individual that she is, asked if I wanted her to bring a large paper bag home from the grocery store for me. Into which I could put my head. Until my hair grew back.

Gee, thanks, girlfriend.

When John came home from work, his eyes widened as he got a full frontal view of my new coiffure.

YES. I GOT CHOPPED AT MY HAIR APPOINTMENT.

He swallowed and smiled nervously. He knows what I'm like when these things happen, because of course these types of things seem to happen to dopey me all of the time.

"Honey. It looks.....kind of cute."

I really do have to give him an A for effort. Really. Poor guy.

 I kept returning to the bathroom mirror over the course of the evening hoping that by some miracle my hair would look vastly improved. Big surprise. It didn't.

I am so tempted to grab my cuticle scissors and attempt to even out some of the chunkier areas on my head, but here's what I've learned after more experiences like this than I care to admit: a cuticle scissors will only make matters worse. My plan is to wash and style this......hair.....of mine in the morning. If there's no improvement, I may have to take drastic action and plead for remedial help from yet another stylist.

But this time I'm leaving my glasses on.

Oh, John? Margaritas. Mango. Now. And keep 'em coming.....

Thank You For the Silverware

Check out this latest gift to me from my amazing daughter-in-law:

It's a bracelet made from a spoon. Why a spoon? Well, aside from the fact that repurposing a kitchen utensil into a piece of jewelry is very cool, a spoon is a symbolic thing to those of us with limited energy.

Ever heard of the spoon theory? It is an analogy created by Christine Miserandino in explanation of life with a chronic illness. Here's a sample, but read the rest here if you haven't before. It's amazingly accurate.

.....Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
     As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
     At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands....

As my precious DIL handed me my bracelet, she said with a smile, "It's for when you need one more spoon."

She GETS it. She really does. Her present to me was much larger than a spoon bent into a bracelet; it represents her effort to sincerely understand what her old mother-in-law is experiencing. What a true gift that is.

She's At It Again

She's in there somewhere. I just know it. 

The whole process of figuring out what is going on in this old body of mine is frustrating and perplexing.

Several of you have asked a very good question: Why should any of the medications that I have been taking for so many years (Plaquenil included) suddenly cause problems for me?

I don't know the answer to that.

I do, however, have a suspicion that the answer may be less scientific than many have thought. I hate to admit this, but I think that my Bratty Inner Child Julia is somehow responsible.

Yes. She's been quiet for far too long.

But these comments left on an earlier post in which I describe my blood, sweat, and tears left on packages made me think:

Kristen said: Yes! My own sampling of Julia DNA! I'm heading for my petri dish as soon as I get mine! ;o)

and

Amy said: I was thinking like Kristen- Julia dna! Yea! Knowing my science skills I would end up with a BICJ (Bratty Inner Child Julia) multiplied. My mwaah haa haa moment to turn into YAHHHHH!

Girls. Seriously?!

As an aside, you wouldn't want a clone of ME even without BICJ. My goodness. I.......I can't.......gosh. There's so many reasons why a Julia clone would be a disaster of major proportions that I can't even begin to name them.

But as we all know, a BICJ-free Julia doesn't actually exist. Any Julia clone would include Julia AND BICJ DNA in every cell. Every one. Which would mean that Amy's YAHHHHHHH! moment would be frighteningly accurate.

Yikes. Let's SO not go there, people.

This scary little exercise in imagination did make me realize something, however. I realized that not only would an imaginary Julia clone's cell contain BICJ DNA, but........................

The real Julia's does too. Which means that every single cell in my body (and trust me. That's a LOT of cells) contains BICJ genetic material.

Every cell.

She's capable of creating havoc in every. single. cell of my body.

Doesn't this explain a great deal about the events of the past month or so? I'm certain that good ol' BICJ has been hanging around quietly in my cells, but became bored when things were going in a predictable manner.

Hm. I can just see her rubbing her hands gleefully as she gathered all of my neutrophils and directed the BICJ in each one to take their respective cells for a hike. "Somewhere. Anywhere! Let's make some trouble here!"

Hey. I'll bet all of my neutrophils were so motivated by their own little pieces of BICJ that they took off to go have a mango margarita somewhere. And cake. Definitely cake...

Who/What Dunnit

Now that the Julia neutrophil tank is full, Dr. Young Guy and I are left with the question: WHY did they go away in the first place?

.::Slaps on Sherlock Holmes style hat and lights pipe::.

.::cough cough.....throws pipe into the fireplace....good grief who actually SMOKES these things?...::.

Whew.

Back to my neutropenia episode, and more importantly -- what caused my white blood count to drop to dangerously low levels? It's a mystery. And who better to solve the case than my all time favorite detective?

You guys get to be Watson. I'm Sherlock, for obvious reasons. Ahem.

So, Watson. What do you think is the culprit? Or WHO? Hmm? We can eliminate a few of the usual suspects right from the get-go. Moriarty probably can be removed from consideration since stealing body parts and blood cells is not his usual modus operandi. Besides, since he's a fictional character, his abilities are significantly diminished, I would think.

Here's the Mayo Clinic's Most Wanted list for neutrophil theft:

• Cancer or other diseases that damage bone marrow
• Congenital disorders characterized by poor bone marrow function
• Viral infections that disrupt bone marrow function
• Autoimmune disorders that destroy neutrophils or bone marrow cells
• Overwhelming infections that use up neutrophils faster than they can be produced
• Drugs that destroy neutrophils or damage bone marrow

Dr Young Guy..... (Wait. I suppose I should hand over the Sherlock role to Dr. YG...but I get to be Watson, then. Y'all may have to play the role of interested onlookers) .... strongly suspects that a medication is the culprit in my case. The reason he can do that is because rheumatologists have amazing deduction capabilities. Thank goodness.

So Sherlock YG's first action once he realized that my whites had dropped was to discontinue my daily medications that have the potential to alter my CBC, one of which was hydroxychloroquine, aka Plaquenil. The other was omeprazole, or Prilosec. My next rituximab, or Rituxan infusion isn't due for another five months, so there's no manipulating that drug except to consider not receiving it again.

On SYG's instruction, I began taking the Plaquenil again a few days ago. And, after just three doses, some of the very perplexing symptoms of the weeks before re-appeared: ringing in my ears, feeling weak, and odd sensations in my muscles of my shoulders, arms, and legs.

Incriminating evidence, that. Interesting.

After reporting my symptoms, I was advised to discontinue the Plaquenil yet again.

Gladly.

If these weirdo symptoms don't diminish in the next week or so, I need to report back to Sherlock, and I will have weekly labs to re-assess my CBC.

The plot thickens. Stay tuned...