Reasonably Well

This One Wins

juliaschulia@gmail.com — Wed, 19 Jun 2013 00:30:02 PDT

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

juliaschulia@gmail.com — Tue, 18 Jun 2013 00:30:02 PDT

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!

juliaschulia@gmail.com — Mon, 17 Jun 2013 00:30:02 PDT

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

juliaschulia@gmail.com — Sun, 16 Jun 2013 00:30:01 PDT

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

juliaschulia@gmail.com — Sat, 15 Jun 2013 00:30:01 PDT

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

juliaschulia@gmail.com — Fri, 14 Jun 2013 00:30:04 PDT

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

juliaschulia@gmail.com — Thu, 13 Jun 2013 00:30:02 PDT

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'

juliaschulia@gmail.com — Wed, 12 Jun 2013 00:30:03 PDT

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....

juliaschulia@gmail.com — Tue, 11 Jun 2013 01:29:10 PDT

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

juliaschulia@gmail.com — Mon, 10 Jun 2013 00:30:02 PDT

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

juliaschulia@gmail.com — Sun, 09 Jun 2013 00:30:03 PDT

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

juliaschulia@gmail.com — Sat, 08 Jun 2013 00:30:00 PDT

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

juliaschulia@gmail.com — Fri, 07 Jun 2013 00:30:02 PDT

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

juliaschulia@gmail.com — Thu, 06 Jun 2013 00:30:04 PDT

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

juliaschulia@gmail.com — Wed, 05 Jun 2013 00:30:00 PDT

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??

juliaschulia@gmail.com — Tue, 04 Jun 2013 00:30:04 PDT

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

juliaschulia@gmail.com — Mon, 03 Jun 2013 00:30:05 PDT

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

juliaschulia@gmail.com — Sun, 02 Jun 2013 00:30:03 PDT

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

juliaschulia@gmail.com — Sat, 01 Jun 2013 10:22:02 PDT

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...

Trust is a Real Gift

juliaschulia@gmail.com — Fri, 31 May 2013 00:30:06 PDT

Although this isn't him, the Maine Coon cat pictured above and found on Wikipedia looks just like our Louie, may he rest in peace...

I'm glad to report that I'm feeling somewhat better after my little neutrophils-went-missing incident a few weeks ago.

Wow. I never want to revisit that experience again....

It left me feeling like what my dad would describe as weak as a cat. Which is kind of an interesting phrase, come to think of it....especially since every cat I've ever known actually would never have been called weak.

All of our cats have been fat and very full of beans. One in particular, Louie, was strong enough to chew his way into the innards of our couch and roam around in there. He also was responsible for most of my curtain rods in the basement windows being completely bent since he liked to perch on top of them. He showed particular strength when I would attempt to drag him off the top of the windows. Ahh. Louie. Miss you, big guy.

Where was I going with this...... Oh, right. I was feeling weak as a (not a cat). This particular flavor of tired/fatigue/weakness is brand new in my experience with autoimmune disease. Dr. Young Guy and I were discussing it yesterday afternoon, and I confessed to him that I felt kind of scared by the whole thing.

Yes, he said. You had me worried.

I was surprised to hear that since he always appears to be completely unflappable. I'm really grateful that one of us could keep their cool in the situation since I was pretty unhinged physically and mentally by then. It's been years since I went all teary-eyed in a clinic exam room. But Dr. YG's calm demeanor and quick plan of action was reassuring. I told him that I trust you, really I do!

I did. And still do.

Confidence in my care is an invaluable thing when my brain goes missing in situations like that. To be able to trust someone's abilities to the extent that I could lay my anxieties aside and rely on his judgment is a rare thing.

It's hard work being your own advocate in the health care system. It requires having a brain that is capable of remembering things, analyzing things, exploring resource type things, and feeling vigilant always. When I'm tired or foggy or flaring, I'm stupid. Seriously. Doesn't make for good advocacy work if I can't even remember my name; much less my medical history including what specific types of DMARDs that I have been treated with.

So even though I know that I praise Dr. Young Guy often, in this particular instance he especially deserves a few kudos. There's very few people out there that I trust enough to allow me to switch my brain off for awhile knowing that when I do, the rest of me is in good hands.

I've given up on my brain. But then that's a whole other discussion...

Are you thinking that I'm being a bit unrealistic here? And expecting Dr. YG to never make a mistake? Or that he would never make a decision that I would disagree with?

Of course not. He's human. None of us is perfect.

But it's so much easier to put confidence in someone who has already demonstrated that his philosophy of delivering medical care closely matches mine, and has looked for not only my agreement in my plan of care but expects me to be an active member of the decision making process.

I've told him that he can never move. Or change jobs. Ever.

What? You think THAT's being unrealistic? Nah.

Patience is a Virtue

juliaschulia@gmail.com — Thu, 30 May 2013 00:30:02 PDT

I'll bet that all the Creativity Challenge prize winners are sitting around thinking, "Huh. Haven't seen any PRIZES appear in my mailbox. The whole thing was probably just a ruse to get my address so that Julia can sell it to junk mail companies..."

But hold on there, folks. Let's not jump to any conclusions.

Here's proof positive that your prizes are indeed on their way, as shown in this photo; which taken immediately before said prizes were whisked off to the local post office.

And I want y'all to know that these little goodies were hand wrapped by ME and probably contain my blood, sweat, and tears on them somewhere....I suppose it really wasn't a safe decision to arm prednisone-shaky-me with a sharp instrument.

It's one of the few tasks that's been completed around my house by ME instead of John in the past few weeks.

See? See how DEDICATED I am to my readers?

Um. Some of them were wrapped and labeled more tidily than others. So all you lucky winners can guess where your particular package was in the line-up for completion.

Our Immune Systems Don't Need Boosting

juliaschulia@gmail.com — Fri, 31 May 2013 11:53:58 PDT

Image found here.

I feel the need to apologize to a reader that sent a question via email recently, because for the life of me, I can't FIND that email.

I remember thinking to myself as I read, Well. That's a really good question! and making a mental note to reply and perhaps write a post around the subject. And then......BAM. My WBCs went missing and the next week or so was kind of......weird. Somewhere in there I misplaced the email although I can't imagine how I did that. I believe I misplaced a lot of things over the last few weeks...

From what I recall, I seem to remember that the question was something like this: "If all the medicines that I take suppress the immune system, what can I take to support immune function? Shouldn't I be taking supplements that boost the immune system?"

The answer? No: DON'T TAKE ANYTHING THAT WILL ENCOURAGE IMMUNE ACTIVITY. And always check with your doctor before using supplements, since many can have very important interactions with medications that you may be taking. (For example: Melatonin can block the effects of prednisone.)

This is important. Why? Let's back up a bit and review the basics of autoimmunity: in autoimmunity, specifically in Sjogren's syndrome, our immune system has a serious flaw. It loses the ability to distinguish between the body and invaders of the body. That is, our immune systems begin to attack our own healthy cells in our moisture producing glands as if they were a bacteria or virus or other agent capable of causing disease. So our own immune system is very, very busy.

It doesn't need any boosting. It's too busy.

Which is why immunosuppressant drugs are often used in the treatment of autoimmune disease. Our immune systems need to be suppressed so that less of our normal tissues will be destroyed, and by taking drugs and supplements that boost immune system performance only makes our disease activity worse.

Which supplements should we NOT take?

A partial list may include ginseng, coenzyme Q10, echinacea, zinc, astragalus (Huang-Qi), garlic, wild indigo, and any herbal supplement that promises to support immune function.

You can read more about supplements here, and here, and here. Always check with your doctor before beginning the use of any supplements.

++Addendum++ June 1, 2013
Hi everyone-- This recent post about supplements' potential for actually doing more harm than good generated an interesting response. It was one of the first pieces of advice that my rheumatologist at the time of my diagnosis gave me. But I can see that since that advice was given ten years ago, that there are some differing opinions about a few of the supplements (supplements taken daily- not the nutrient or vitamin found in healthy foods) garlic in particular. I guess that the take-away from that post is: never assume that supplements are without side effects, and always check with your doctor to discuss your particular situation before beginning long term use of these products.

Laura C. Strom: Adverse Childhood Events and Disability

juliaschulia@gmail.com — Tue, 28 May 2013 00:30:03 PDT

Image found here.

Fellow sjoggie Laura C. Strom, licensed Professional Clinical Counselor and Marriage and Family Therapist, has written a thought provoking article entitled: An ACE Up Your Sleeve -- The surprising story behind adult illness and disability - implications for parents.

You can read her article here.

Interesting. Although my ACE (Adverse Childhood Events) score would be zero, still I'm certain that for others, trauma could definitely be a trigger for autoimmune disease when accompanied by other risk factors such as family history of autoimmune disease and viral illnesses. Check it out.

Sister Julia? Probably Not.

juliaschulia@gmail.com — Mon, 27 May 2013 00:30:03 PDT

*Blink*

Hey. I think I'm going to survive, people. I feel as though I'm slowly coming to life again.

My first big outing after my neutrophil crash took me to church yesterday. After Mass, I was snagged by Greg. "Hey there! I hear that you think that the cloistered life isn't for you!"

I had to think about that. Then.....HA! Oh, right. I had been extremely vocal about my claustrophobia when I was stuck inside on doctor-instructed house arrest to avoid germs. Anyone that had any kind of interaction with me either by phone or online knew without a doubt that I wasn't happy being in isolation. And I made my opinion of my reluctant reclusiveness very well known to anyone who would listen.

Yes. I would agree with Greg that I wouldn't do well as a cloistered nun. For several reasons......

Even delusions of grandeur as enormous as mine don't include me hanging out with the likes of Saint Therese of Lisieux, who was a cloistered Carmelite nun.

Fr. O. saw me and chimed in, "Hi! They let you OUT?"

Yes. For good behavior!

He waggled his finger in front of my nose. "Julia. I know you, and that couldn't possibly be the TRUTH," he said with a twinkle in his eye, and everyone around us burst into laughter.

Ah, Father.....of course you're right......

It's so good to be out and about again. Even if I have to tolerate harassment.

How I Arrived Here: My Diagnosis. What's Yours?

juliaschulia@gmail.com — Sun, 26 May 2013 00:30:00 PDT

A reader asked recently: I think I have read almost everything on your blog, but I have not seen anything about your story of your diagnosis. Did I miss it? If not, it might be a good subject for us newbies.

Hm. I know that I've written about this topic before, but I think it HAS been quite awhile.

Here's how I introduced myself and my brand spankin' new blog on MARCH 26, 2008. Wowsers. Five years ago. Seems like yesterday:

I'm Julia - and today is a good day. I'm feeling reasonably well.

Welcome to my blog. I'm a fifty-something woman living in the Pacific Northwest. Five years ago my life changed dramatically. I went from being an active, independent, working lady to someone who spends much of her time carefully measuring her energy levels and matching activities to those levels. I was diagnosed with a chronic disease.

My specific illness is Sjogren's Syndrome, an autoimmune disease. This disease causes my body to create antibodies which attack my own tissues. These autoantibodies attack the glands which secrete tears, saliva, and mucous. The disease also can cause debilitating fatigue, joint pain, and depression. Sjogren's is similar to Rheumatoid Arthritis and Lupus. Some studies state that approximately 10% of those with Sjogren's go on to develop Lymphoma.

If you saw me today, other than thinking maybe that I need a better hairdo and eyebrows waxed, you probably wouldn't suspect that I have Sjogren's. I get around pretty well, don't have green or purple spots anywhere, and usually manage to dress somewhat appropriately. Underneath this mild mannered exterior, however, lurks a seriously cranky woman. I deal with eyes that constantly feel like sandpaper, a mouth and lips always dry, and most significantly, bone crushing fatigue. Occasionally my saliva glands become enlarged and painful, and all my symptoms increase dramatically. Those periods are frequently referred to as "flares". I have learned over the years that when I am in a flare, I am in bed. Period.

Sjogren's has been an expensive disease. It has cost me my job, several friends, most of my hobbies, and a big chunk of my sense of humor. Thankfully, it has also strengthened my bond with my husband, family, faith, and my closest friends.

My blog isn't intended to garner sympathy, or evoke pity. My goal is to provide a place to share information which may help me and others with chronic illness. In exploring information and experiences, one can hope for many more reasonably well days.

See you tomorrow.

Well, now. Sounded a bit serious and pompous back then, didn't I? Ah, but that's before I allowed my true doofus-ness to reveal itself. Which didn't take long:

So there I was, sprawled out, head down, feet up, mouth open, with all kinds of dentistry equipment sticking out of my mouth. I have had enough work done on my teeth in the last five years that I have a running gag with the dental staff. They said that I've qualified for a frequent flier program of sorts.

Gee thanks. Wish that actually translated into a free crown or two.

Lack of spit does disgusting things to one's teeth.

Nitrous oxide, however, makes all things tolerable in the dentist's chair. Not only tolerable, but even mildly amusing. I was trying to hum "Yellow Submarine" around at least a pound of gauze and another two pounds of hardware. I love nitrous.

The dentist was called away mid-procedure, so I was left alone for a few minutes blissfully babbling and inhaling deeply.

In my warm fuzzy little drug induced cloud, two large red objects swam in and out of view, capturing my attention. Well, good golly. They were shoes. MY shoes. I had never noticed before how attractive they were, even if they were a dainty size eleven. (I am not kidding - size eleven. I have some serious real estate attached to the end of my legs). Dang, I thought. I have great taste in shoes.

When Dr. E. returned, I was engrossed in examining every detail of those shoes. Red canvas. White stitching. Elastic curly laces. Who knew they were so interesting??

As Dr. E. returned to my chair, I shoved one foot near his face and declared, "Would you just LOOK at these shoes? These are great shoes. Wonderful shoes. They're my very luckiest shoes!"

Well, that's what I said. Actually, what came out of my mouth around all the equipment probably sounded like "wffwwuuuulOOOOOOkshOOOz!!!"

Dr. E. deftly reached past the floating size elevens and turned down the nitrous. Rats.

He still asks me where my lucky shoes are each time I visit.

And then there's this post, in which I introduce my BICJ (Bratty Inner Child Julia) for the very first time to my unsuspecting readers:

I am told that everyone has an inner child, and this child represents that side of themselves which is playful, creative, uninhibited, and innocent.

I want one of those. My inner child is a brat. For example:

Me: OK. I know that eating lots of sugar and fat will only make life more difficult for me, so I am going to push this shopping cart right past the giant M&M cookies in the bakery.

Inner Child Me: Grabs a dozen cookies and runs to the checkout. Chomps one cookie before they are paid for. Greets cashier with a mouthful of crumbs.

Me: Time to get up, Julia.

Inner Child Me: "No way, dodo head!" Burrows under covers and goes back to sleep.

Me: Look at this great yoga DVD!

Inner Child Me: Throws self onto Couch and digs in heels. "I'm not moving and you can't make me. Nanner nanner nanner." Sticks out tongue.

What is a person to do with an undisciplined naughty inner kid? Put it in time out? How would that work? Withhold an allowance? (Better not mention that one to John...). And we're not going to consider spanking. That would be just plain weird. I may have to consider bribery if all else fails.

In the meantime, I'm going to have to settle for a stern warning. So listen up, you young stinker inner child: I have had enough, young lady. I will not tolerate any more shenanigans, Missy. Do you hear me? Don't make me stop this car!

That ought to do it.

Yeah....right about then I let my true colors show. But I suppose these little trips down memory lane don't say much about my actual diagnosis. Which is what the reader really wanted to know and the topic of this post, written back in January of 2010:

Every sjoggie has a different story to share, but here's how it all happened for me.

In the fall of 2002, life slowly seemed to change for me, and I just couldn't put my finger exactly on what was going wrong. I had a job that I loved, my family was happy and well, and I felt as though I should have been living large and feeling fine, but overall, I felt lousy. Constantly.

Initially, I chalked my problems up to my age and my pudgy waistline. I began to be more careful with my diet and made an attempt to get more exercise, but in spite of my efforts, I felt as though I was becoming more unwell as the months went on.

On an annual exam with my family doctor, I had brought along a lengthy laundry list of complaints, and bless her heart, Dr. H. pulled up a chair and reviewed each and every item on my list. My ears were constantly ringing, my eyes and mouth were dry, and my sense of smell had seemed to vanish. I was popping Tylenol and ibuprofen almost daily for aches and pains and the sensation that I was just on the edge of running a temperature. I had no energy to do anything but to go to work, then come home and collapse on the couch.

And I was cranky as all get out.

So she ordered lab work to screen for various problems and made a referral for me to see an ear-nose-and-throat doctor and an eye doctor.

The ENT physician could find no structural problems that would cause a decreased sense of smell or tinnitus (ringing in the ears). My eye doctor noted that yes, indeed, my eyes were dry. She prescribed some eye drops. My labs showed that my thyroid not producing enough thyroid hormones, and I had an elevated sedimentation rate, which indicated some kind of inflammatory process.

So I popped my Synthroid - replacement thyroid hormone - and tried every brand of eye drops that I could get my hands on for about six months. But in spite of continued discussions with Dr. H., I continued to feel as though I was slogging along through a giant bowl of jello, both physically and mentally. Routine tasks suddenly became difficult. I found myself checking and re-checking my work and second-guessing my decisions. My thought processes seemed to be slowed almost to a halt. I began to carry wads of kleenex in my pockets to mop my face since any small exertion left me sweating profusely and make up and mascara melted away. I knew these spells were not related to menopause since I had my ovaries and uterus removed several years previously and was already taking estrogen.

I began a very expensive relationship with my dentist after multiple cavities began appearing in my teeth at my gum line. My dentist thought that my dry mouth may be causing the cavities, prescribed fluoride mouthwash and gave me the classic oral hygiene lecture. I also began to appreciate nitrous oxide during these uncomfortable appointments.

I was tired and miserable, and getting no answers.

Then one day, my director of nursing took me aside. "So what's going on with your face, Julia?" she asked.

Excuse me??

"Have you noticed that well......you look as though you have the mumps? Here, look." She guided me to a nearby mirror.

Whoa! No, I hadn't noticed that my face was swollen, especially right in front of my ears. But by then I was too tired to notice if my shoes were on the wrong feet. Or if my hair was purple. I didn't really care.

"I want you to go home and get this checked out. Let me know what you find out - and feel better!"

I dragged myself home and called Dr. H yet again. Later, I sat across from her in the exam room and cried. "I feel so awful. I know that this isn't the mumps since I had a whopper case as a kid. What is going on?"

Dr. H. looked thoughtful. "I am going to have you seen by a rheumatologist. OK?"

Why?

"Because you might have an autoimmune disease called Sjogren's syndrome. Your enlarged parotid glands made me think of it. I'm not sure about this, but a rheumatologist will know what specific labs to draw and how to get a diagnosis."

What the heck is show - show - whatever you said syndrome? Never heard of it.

"Most people haven't. And I might be wrong, but let's check it out."

At my rheumatology appointment, Dr. S. explained that I did indeed have the classic symptoms of Sjs: dry eyes, dry mouth, enlarged parotids, fatigue, achey joints, and brain fog. Further labs showed that I had elevated c-reative proteins, positive ANA, and positive SSA/ro autoantibodies, all of which indicated that I had joined the Sjoggie club. She prescribed plaquenil and prednisone and so it all began......

It took about one year for me to get a diagnosis, and an additional three months before my medications began to take noticeable effect. And as every Sjoggie knows, a diagnosis does not translate to living happily ever after. The last seven years have been a rollercoaster ride of highs and lows.

So - what is so therapeutic about having a physician say these magic words, "Your diagnosis is...."?

It's relief that what is unknown is suddenly known. That you are not crazy, lazy, or a hypochondriac. A diagnosis doesn't make the symptoms of Sjogren's syndrome less difficult, but it does give them a legitimacy of sorts. The first time that I saw the words, "autoimmune fatigue due to Sjogren's syndrome" written in my chart I felt a very strange sort of satisfaction. Heck, yes. I am tired and sick and there IS a reason for it all.

So that's my story.

What's yours?