Time for More Soap

Vintage Ivory soap ad found here. 

A couple months ago, I sent John to the store to buy some bar soap.

GASP!

Y'all may recall that I went on a make-my-own-soap rampage a few years ago which produced pounds and pounds of wonderful cold-process soap. I used organic oils and shea butter and just a hint of essential oils to add fragrance.

Not every batch was a winner, though. There was this one recipe that called for coffee and coffee grounds, which I thought sounded like a great hand soap for the kitchen.

The bars looked and smelled delightful. And then disintegrated into a unsightly brown blob after one or two uses.

Ah, well.

But the majority of my dabblings into the world of saponification were a success, and I thought that we would be using my home made bars for years. Which we did. Two years, in fact.

So now there's a bar of commercially made Ivory soap sitting in our shower, and even though it's advertised as pure and simple, it leaves my skin dry and itchy. I think it's time to turn soapy scientist again and whip up a few more batches.

That, or I could buy home made soap for about four bucks a bar. Snort. NOT.

I'll keep y'all posted. Now where did I put my rubber gloves, goggles, and lye?

The Moisture Seekers: Sjoggies and Sunshine

Image found on wikipedia, here. 

If only I had read my latest issue of The Moisture Seekers -- the excellent newsletter from the Sjogren's Syndrome Foundation -- I might have avoided some of my latest aches and pains:

12 Tips for Dealing with the Sun and Sjogren's
by Mona Z. Mofid, MD, FAAD

Summer months are most often associated with people enjoying the sun but Sjogren's patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultravoilet (UV) radiation emitted from the sun and other light sources (such as some flourescent lights) can alter immune function and lead to an autoimmune response in the body and in the skin.
     In Sjogren's patients skin rashes and disease flares can result, as well as ocular sensitivity and pain in response to the sun. In Sjogren's, sun sensitivity is associated with the autoantibody SSA/or Ro.......continue reading here.

Take it Elsewhere

Reasonably Well is MY GAME. My party. And this means that we all have to play by MY RULES.

I never thought I'd have to write a post like this, but here goes:

I will not link to or publish comments from individuals that put up hate speech, bigoted commentary, or intolerant information regarding any religion, race, or creed.

I recognize that people that wish to publish this kind of stuff have every right to do so, but I DON'T have to link to it or allow it's publication here.

For awhile, I will moderate all comments intended for this blog. I realize that 99.999% of my readers would never consider putting this type of information out there, and to those I apologize for y'all having to read this post. I'm sorry.

And no, I don't want to talk about it, except to say that this incident isn't worthy of further consideration. So don't ask.

Ouch

Can a person really spend too much time at a beautiful place like this??

I think I had too much sun over the past week or so.

Or too much something.

I say this because everything is hard to do this morning. You know -- really difficult things. Like getting out of bed. Or bending over to tie your shoes. Or remembering my husband's name.

I love summer weather like we've had over the past week. It's been lovely clear blue skies and warm but not hot temperatures with a slight breeze; just strong enough to make the curtains at my windows billow.

Ahhhh.

I slather on sunscreen. I wear my sunhat. (Mostly.) I stay in the shade, and I don't have anything even close to a sunburn; but it seems as though after about a week of this kind of weather, my bones ache and my fatigue levels rise. A few lupus blotches appear here and there, and I'm really really stupid.

Seriously.

I've been popping more ibuprofen to see if that will quell some of whatever this is... with only marginal relief of my joint pain and absolutely no increase in my mental abilities.

I'm thinking that I will have to put myself on house arrest for a day or so to see if this calms things down a bit.

Whaddya think? Is it the sun?

How does your body react to sunshine?

Buh Bye Bushes

Big excitement around here over the past few days.

About fifteen years ago, John and I planted a dozen Leland cypress trees lining our fence. They were small scrawny things and we were told that they would make a great privacy screen once they were mature.

Were they EVER.

We thought they were at their maximum height about five years ago, but we were wrong because they kept growing and growing and growing. I half expected a giant-seeking guy named Jack to start climbing one......

They began to grow sideways as quickly as they did vertically, and took over more than their share of the sunshine and nutrients on the north side of the lot; so we made a very reluctant decision: they had to be replaced with something smaller yet very very green.

Phase one: remove the cypress.

What a huge undertaking that turned out to be. But the crew that we hired -- no, John and Greg weren't allowed to climb a fifty foot tree with a chainsaw -- made short work of it.

Step two: remove the stumps and plant new arborvitae.

The view from my hammock chair now includes much more blue sky.

This may take some getting used to.

Following Atticus and Lulu

A couple of years ago, my daughter-in-law gave me a copy of  Following Atticus.

I loved it. What's not to love about the true story of a brave little dog and his human (Tom refuses to say he's Attie's owner) and their hikes into New England's White Mountains?

I think Attie looks just like Lulu but she was indignant when I told her that. I think the fact that he is a male had something to do with it...

Tom and Atticus have their own facebook page, so Lulu and I have been following along with their adventures this summer. As she and I took a few very short hikes together, I could see why Tom titled his book "Following Atticus". Schnauzers like to take the lead -- on walks and life in general -- and so I'm sure that Tom and I both got the same view of our little black and silver Schnauzers as we walked. Aww.

It's funny how my perspective about pets has changed over the years. We've always had dogs +/or cats but then I've always been preoccupied with my kids and marriage and work on a day to day basis so the critters were just another part of our pack. Now that the kids have grown and I'm not working, my pets have taken a much larger role as companions these days. I'm amazed at how much I depend on Lulu. I talk to her all day long. We go places together. She sleeps with John and I. We like the same movies and television shows.

Some people don't believe me when I tell them that Lulu talks to me but whatever. Pfffttt. Lulu and I know the truth.

Recently I read with a sinking heart that Attie had been diagnosed with bone cancer; had a toe amputated; and now was beginning a course of chemotherapy. My goodness. Of course I can't really know how both Tom and Atticus feel about this but I know how I would feel.... I would be devastated.

Reminds me of those difficult days with Maggie last fall.

As I follow along with their blog and facebook page, it's a good reminder to me to never take our friends and family for granted: and that includes those of the furry persuasion.

C'mere Lulu. I need a hug.

Oops.

Yesterday's post just proves once again that a foggy Julia should not attempt a task any more complicated than operating a can opener.

Because as I've mentioned before, for me, TIRED = STUPID.

In writing about the baminercept studies, I was lazy and copied and pasted information about this drug without doing multiple fact checking and mis-identified it as a TNF inhibitor.

Geez.

I'm thankful to Dr. Carterton for pointing out my error. I have since corrected my post.

Baminercept actually is a dual-mechanism, lymphotoxin-b (LT-b) and LIGHT pathway inhibitor.

(I know. I said the same thing when I read it. It's complicated.)

Here's where I goofed. Image and text found here:

Fig. 1. The tumor necrosis factor (TNF) core family and signaling pathways. The interactions of TNF cytokines with their cognate receptor(s) are shown by arrows. Binding of ligand to receptor leads to the induction of downstream signaling cascades. The presence of a DD in the intracellular portion of the receptor (depicted in yellow) results in the recruitment of TNF receptor 1 (TNFR1)-associated death domain (TRADD) and the ultimate induction of apoptosis. In the absence of a DD, TNFRs interact directly with TNF receptor-associated factor (TRAF) molecules to induce signaling via the classical nuclear factor kB (NFkB) pathway, resulting in the translocation of NFkB heterodimers (i.e. p50/RelA) to the nucleus to induce effector genes. The LTbR also induces

a nonclassical NFkB pathway involving the processing of p100 and the translocation of p52/RelB to the nucleus. HVEM, HSV entry mediator; FADD, Fas-associated death domain; IKK, IkB kinase; NIK, NFkB-inducing kinase.

So I made the assumption that since lymphotoxin-beta receptor ( LTBR ) is a member of the tumor necrosis factor receptor superfamily (TNF), that this drug when it suppressed LTBR would also be considered a TNF inhibitor. But this assumption is wrong because it's too generalized.

In the future, all posts written by me on brain foggy days will be about stuff like..........hm. Cute kittens. Adorable puppies. I'll wah-wah-wah about things and talk about junk that I've bought on Amazon. But I won't take on tasks which require more than three functioning brain cells.

I promise.

Baminercept and Sjogren's Syndrome Study

Thanks to reader Julie for alerting me to this study which is currently recruiting participants. It is studying baminercept vs placebo in Sjögren's Syndrome and conducted by National Institute of Allergy and Infectious Diseases (NIAID). This from Clinicaltrials.gov:

The purpose of the study is to find out if the experimental study agent, baminercept, is effective in treating patients with Sjögren's syndrome. The study will also determine if the study agent can be safely given to patients with Sjögren's syndrome; examine how it affects symptoms of the disease; and attempt to understand how baminercept affects the underlying mechanisms of Sjögren's syndrome and the immune system.

You can read more about study number NCT01552681 and search for other Sjogren's related studies here. Baminercept is a dual-mechanism, lymphotoxin-b (LT-b) and LIGHT pathway inhibitor. You can read more about baminercept here.

You can read about other current Sjogren's syndrome studies on the National Institutes of Health ClinicalTrials.gov site, here.

(This post edited. I had previously identified baminercept as a TNF inhibitor, which was incorrect.)

Who Put a Marble in My Shoe?

Dumb stupid metatarsals. 

You know, sometimes I feel as though I was meant to remain fat and stuck on the couch for the rest of my life.

Grumble.

In spite of my nasty osteoarthritis in my right knee, AND the trochanteric bursitis in my right hip, I've been making an effort to get this old body of mine moving.

I even had a vision of myself in hiking boots while I was in church.

So I've been doing a very limited amount of walking in my perfectly fitting and brand new hiking boots, and an excessive amount of patting myself on the back and bragging about it all. But I gradually noticed that my left foot felt as though I was walking on a marble. The decidedly sharp pain in my foot was only made worse over the past weekend by doing even more walking, some of it being in soft sand which was excruciating.

So I limped over to see my family practice doctor, who ordered an x-ray but felt that my problem was probably something called metatarsalgia; this list of symptoms from the Mayo Clinic website:

• Sharp, aching or burning pain in the ball of your foot — the part of the sole just behind your toes
• Pain in the area around your second, third or fourth toes — or, only near your big toe
• Pain that gets worse when you stand, walk or run and improves when you rest
• Sharp or shooting pain in your toes
• Numbness or tingling in your toes
• Pain that worsens when you flex your feet
• A feeling in your feet as if you're walking with a pebble in your shoe
• Increased pain when you're walking barefoot, especially on a hard surface

Yup. Sounds about right. Mayo explains metatarsalgia this way:

In each foot, five metatarsal bones run from your arch to your toe joints. The first metatarsal is shorter and thicker than the other four bones, which are usually similar in size. During the push-off phase when you walk, jump or run, your body weight is transferred to your toes and metatarsals. The first and second metatarsal bones take the brunt of this force. Most metatarsal problems develop when something changes in the way your foot normally works (mechanics), affecting how your weight is distributed. This can put excess pressure on the metatarsals, leading to inflammation and pain, especially in the metatarsal heads — the rounded ends of the bones that connect with your toe bones.

Good grief. It's painful enough that I can't even think of another walk of ANY length. 

Wah!! And just when my energy levels were returning!

I've been advised to take whatever NSAID works best for me, to occasionally apply ice, to get myself a shoe insert that contains a metatarsal pad, and have been given a referral to a podiatrist. 

And was told to rest my foot. Yeah.... I'm good at that.....

I'm not looking forward to breaking the news to Lulu that our walks with be put on hold for awhile. Maybe I can placate her with promises of more rides in Goldie; and maybe I can come up with some other kind of exercise that doesn't stress my finicky metatarsals. Like my aqua yoga class or my tai chi videos. 

Don't worry, Lulu and my lovely blue hiking boots. We'll be out and about in no time.  

World Sjogren's Day 2013

So whatcha doing to commemorate World Sjogren's Day? It's today, in case you didn't know.

I'm wearing my blue Sjogren's Syndrome Foundation bracelet, and of course putting up this post. But to be honest, I'm not sure what else to do.

There's so much to be done. Like: raising disease awareness, raising research funds, educating healthcare providers AND patients, and evaluating moisture replenishing products, for starters. I feel kind of helpless when I think about the size and scope of the items on that list.

I guess the best thing for me to do is ignore the enormous challenges and focus on small but concrete tasks, as well as promote the spectacular efforts of others. For example, I'm pretty proud of our creativity challenge and the awesome results which included Super Hydrating Nixie, created by Amy and Cole, and who would be an excellent mascot for our cause, if you ask me.

Nixie, you're fabulous. Just fab. 

I'm going to send pictures of Miss Nixie over to the Sjogren's Syndrome Foundation, and post her picture over on Sjogren's World Forums.

Hm. I'm thinking Miss Nixie would look stunning on a t-shirt. Now there's an idea........

Aside from chugging water, eye-dropping frequently, performing meticulous oral hygiene, carefully parceling out energy and slathering sunscreen, what are your plans for World Sjogren's Day?

Renewal

It's an amazing experience to go to church and listen to the waves crashing on the shore AND the liturgy simultaneously.

I have to admit I spent more time listening to the waves than much of the service. I tried to focus on the prayers and Pastor's sermon, but eventually I decided that the sounds coming from outside the church were a form of worship, too.

So I sat back, and let the best of both wash over me.

Love without limits or expectations.

Waves crash....

Forgive one another.

Seagull calls as it flies overhead...

Be thankful always.

Surf pounds...

Choose your priorities with care.

Distant sounds of children laughing....

God is so good.

Yes. Yes, he is.

It's All Good

Wonderful day. See y'all tomorrow.

The Hammock Chair Lives On

Sometimes I write my blog posts here. 

A few days ago, on Reasonably Well's facebook page, I put up a few pictures from a devastating event: the collapse of my hammock chair.

Oh, my. Allow me a minute, here. Sniff.......Sob.... it was very traumatic.....::Kleenex eye dab::.

OK. I'm back.

I'm happy to report that the story has a happy ending. It all went down (har har har) like this:

I've written many times before about my love of my hammock swing. I've posted a zillion pictures of my feet sticking out of it's knotty confines as I hang around the back yard.

Like this. 

Lulu likes my swing too.

Heck. I even sit in the thing when it's raining. 

So the story begins as I'm in my usual swinging spot; firmly ensconced in my chair which hangs from underneath our deck.

Like this.

We have a daylight basement so the ground story deck is actually the second story when you look at our house from the back. Whew....this is too confusing......I may need to come back to rewrite this part after another cuppa coffee.......

Anyway, it was a beautiful evening and I was all blissful and swinging and everything when BAM!!

My hinder hit the ground. It wasn't pretty, especially when I noticed that my chair was broken because one of the key knots in the jute cords had come undone.

Wah!! I love my hammock chair!! I can't live without my hammock chair!!

John came running outside, certain that I had amputated a leg or something. "Babe! Are you all right?"

NO. I am NOT ALL RIGHT. My chair broke!

I can't adequately explain how much this chair means to me. Seriously. When I stretch out in this chair, I feel weightless, almost like I'm floating. It's suspended from a very sturdy bolt and a heavy duty spring so that I can float and boing-boing-boing to my heart's content. That floaty and boingy sensation is beyond comfortable for me. I'd almost say it's therapeutic.

Now Terese? She can't stand sitting in my chair because she says it makes her car sick.

Pshaw.

It rejuvenates and refreshes me more than just about anything. I don't know why. But it works, and so I was panicked when my backside hit the ground and I realized the chair was broken. I had whipped out my phone and was on Google shopping for a new one by the time John had heard me whining and came out to investigate.

He looked closely at the pile of tangled cords. "I think I can fix this, hon."

No, you can't. I'm ordering a new one. ASAP.

"Well, if we need to, sure. But just give me a minute or two to see if I can save this one."

I rolled my eyes and headed over to a ordinary boring lawn chair to keep scrolling through the Amazon site. I heard him muttering and talking to himself as I was wondering whether to go with the natural cotton fiber one again or a polyester cord swing when he straightened up and shot me a triumphant look.

"Check this out, Jul! It's FIXED!"

I looked at it with amazement. How did he do that?! I wondered. I mean, he had to practically re-weave a whole chunk of the thing to get it back together. And then re-tie that very, very important knot that kept it hanging from the wooden spacer bar.

"C'mon! Try it out!"

I gingerly sat down.

SPLAT! OWIE!!

"Hm. I think I need to re-engineer that knot....."

I rubbed my smarting buns. No kidding.

I was enlisted to hold this and that and hang on to the whatchamacallit, after which John beamed with pride. "It's fixed for SURE, this time, honey! Get in!"

I looked the chair over skeptically. Are you sure?

"Trust me, babe!"

WHAM!! OOF!! This made three -- count 'em -- THREE times that my backside hit the dirt.

We were not amused.

John tried really hard to stifle his chortles, which I found tremendously irritating.

OK. ANY gratitude I may have had for you trying to fix this thing is SO gone now that you're laughing at me!

"I'm sorry, hon, really I am. I was so sure that knot would hold. Here. Hold this while I try to tie it up again."

No.

"Aw, sugar, please? I promise that I'll be the one to test it next time."

I reluctantly resumed my hold-this pose.

Minutes later, John was swinging and boinging vigorously. "I did it! See? All better! Your turn!"

Hm. Carefully, I eased my bruised buns into the chair. Sigh. Ahhhhhhhh.........

OK. He's a genius. I admit it.

Teddy

Aiiiieeeeeeeeeee!

Guys. My brain just exploded.

Did you ever see something that was so cute you thought you would just dissolve into puddle of sugary goo?

Of course you have.

My friend Bev (of Cluckingham Palace and chicken fame) bought a Chihuahua mix puppy and she is The. Most. Adorable. Puppy. EVAR.

Check out Teddy the puppy chewing my shoes while I attempt to collect myself.

My goodness.

Oh, no...... I just looked again! Squeeee!! Help....me......

Talent

Remember back when the creative duo Amy and Cole came up with the fabulous Nixie the water sprite to represent Sjogren's?

Are you ready for MORE creative fabulousness?

Of course you are.

I recently received an email from reader Susanne that contained this delightful mental image of rituximab, (the medication made from mouse proteins that removes a very specific B lymphocyte from the bloodstream. You can read more about rituximab and it's use in Sjogren's syndrome here.)

Susanne has taken the mousey element of this drug and given it a decidedly friendly face:

It's Stewart Little adventuring with his canoe, car, skis, bike, spelunking equipment, hand-glider, scuba gear, space suit, etc... with a burlap bag adventuring around picking up little CD-20 B-cells wherever he finds them.  They're gently put in his sack and, when his bag is full, the cells are taken to the infirmary where their wounds are treated.  I might change it to a messenger bag, but for now I'm sticking with burlap bag.  Of course each outfit/sport could require it's own sack...a mesh bag with a string for scuba, a backpack for hand-gliding.  This could be fun!

I'll say, Susanne! I LOVE Stewart Little! He would make an excellent rituximab spokesmouse. Keep us posted on his development. 

You can buy your very own Stuart Little book here. 

Down By the Riverside

It's kind of embarrassing how clean my hiking shoes are. 

I took my new hiking boots for another test run yesterday. Lulu and I headed down the hill and over to a nearby small lazy river late morning, since the forecast was for hot hot hot temps later in the day. Lulu has never met a river. I thought it was about time that introductions were made.

I thought the water looked cool and refreshing.

Lulu wasn't impressed.

What?! Go IN the water? Are you nutso?

But it was a nice little -- very little -- walk. I made it back to Goldie without falling on my face, or on Lulu, and once home didn't have a mega-crash.

Ahh.

Well-Meaning But Clueless

Angana left this comment on my recent post regarding Venus Williams' interview on the Katie show:


So many things occurred to me when I read this post. I, too, applaud Venus for sharing her experience with Sjogren's so honestly, bless her heart.

Comments like, "So, you're feeling pretty well, now, right?" is a huge trigger for me, as I suspect it is for a lot of chronically ill people. All sorts of snide, impolite rejoinders come to mind, along with the anger, frustration, and confusion of searching for an authentic yet socially acceptable response. On top of that, this particular comment is a leading question; it directs Venus to answer in the affirmative, regardless of the truth.

But, what would we like people to ask instead, when they ask after our health? For instance, would it have been better for Katie to ask, "How are you feeling right now?" Or, "How have you been feeling since Wimbledon?" That is, of course, assuming Katie really wanted to hear the answer.

And how might we respond to the well-meaning but clueless people we all come in contact with? Since discovering this blog, I have decided that "I'm doing reasonably well" is often the most authentic, succinct response, unless, of course, I can say something like, "well, today I am feeling tired (or achy, or whatever...)

This is a really meaty topic, and I wonder if you might explore it in more depth in a future blog post, Julia.

Angana is right. This is a good topic for discussion, especially her comment: "....And how might we respond to the well-meaning but clueless people we all come in contact with?"

This is hard, especially the "well-meaning" part, isn't it?

Here's an example from my own experience: One day last summer, I was enjoying one of those fabulous times when the energy stars aligned and I was able to shower, apply makeup, and attend an event at our church. I really enjoyed my "feel good" day. An acquaintance approached me and complimented me, saying "Lookin' great, Julia! I'll bet this means that you're cured, isn't that wonderful?"

Um. I smiled at her while thinking frantically about how best to respond. If I nodded in agreement, well.......that would be just wrong. If I got defensive and told her that just because I was having a good day did not mean that my incurable disease was suddenly cured, I could hurt her feelings. And I really didn't want to do that. She really meant no harm, I know it. But it still left me awkwardly wondering what to say, and I believe I stuttered something about having a good day, yes, but unfortunately not cured....  Although this is what I ended up saying, I really didn't feel great about my response. I hate being put into a position where I have to convince someone that I'm not well. I hate that.

In retrospect, I suppose I could have said something along the lines of, Wow.... wouldn't that be great if a cure for autoimmune disease came along soon? But it's not here yet, darn...

Or I could have not addressed her comment at all. Or I could have asked HER how she was feeling these days. Or I could have....I could have....

Hm. There's got to be a better way to handle these situations.

What do you think? How do YOU respond to well-meaning but clueless people?

Just Because....

...this is awesome.

Dog Tired

I'm pooped today. Not because of my Sjogren's, although it's a mighty handy excuse....this time it's because I didn't sleep well last night. Also not because of Sjogren's -- related sleep disturbances, though it does that to me on occasion as well. AND not because my legs were restless and achey (they were but I could probably have taken my meds and quieted them down enough to get to sleep).

No. The reason that I didn't get enough sleep last night was because dear little Lulu; my doggie woogie buddy ol' pal that she is.......ate a slab of a very big chocolate cake covered generously with chocolate ganache icing.

Obviously, this was an accident, rotten little canine. She found a piece that I had set aside and made short work if it. I'm surprised that she didn't eat the paper plate and plastic wrap that encased it.

I worried that she may have had enough of the cocoa and bittersweet chocolate that was in the cake to hurt her, so I kept a very close eye on her for three hours, waiting to see if she would have any signs of distress at all, at which point I was ready to zoom her over to our local 24 hour veterinary hospital since it was ten pm. So I sat out in my hammock chair half-asleep, watching her romp around.

Lulu was happy as a clam. Well, happy as a larcenous clam that successfully stole a huge chunk of cake, that is. She chased moths. She played with her toys. She jumped up on my lap and licked my face. She ran in and out of her new doggie door.

She was, in short, very pleased with the fact that she had stolen two large pieces of chocolate cake; and quite delighted that I was unusually willing to play with her long after we should have been sleeping.

I got out my stethescope and listened to her heart, since I read that tachycardia was one of the early symptoms, but her rate was within normal limits for a dog. Her heart was beating at a regular rhythm. I moved the bell of my stethoscope over her tummy expecting to hear lots and lots of activity from a schnauzer belly stuffed with baked goods but......nope. A few growls (hehe see what I did there? snort) but otherwise sounded fine. Although playful and energetic, she didn't seem twitchy or neurologically impaired in any way and was able to sit quietly on my lap as long as I was rubbing her very favorite belly-rub spot.

After three hours, I decided that it was probably safe to go to sleep since she was not experiencing any ill effects whatsoever, so Lulu and I tucked ourselves into bed. I was tired, and began to drift off to sleep when.......whap.

A slobbery doggie toy was tossed onto my face. I opened one eye and saw miss Lulu the mooomooo looking expectantly at me with her "Let's play!!" face.

Oh, brother.

I figured that the mutt-mutt was probably going to be just fine as far as the chocolate was concerned but she was acting as if she had chugged a triple shot espresso. Which makes sense since chocolate not only has theobromine, but also caffeine, neither of which is good for dogs.

What AM I going to do with you, missie?! I asked her. She jumped around on the bed a few times and then scampered down the hallway, down the stairs, and outside.

Ah. Guess this means we're going back out to play.

I followed her out in case she was beginning to have diarrhea or any of the other toxin symptoms. Which she didn't since by the time my tootsies hit the back yard grass, Lulu was happily chomping on a rawhide bone.

I thought about just putting her in her kennel next to our bed for the night, but I wasn't certain that I would wake up if she began acting chocolate cake strange.

Somewhere around three AM, Lulu finally hopped back up on our bed, arranged the covers into a perfect little doggie nest, and dropped off to sleep as if nothing at all had happened.

Then woke up at six am as usual. Sigh.

Takes me back to those anxious nights spent next to a sick child. Although I have to say that my babies were much cuter than this little furball.

More cake, please!

Lulu. Girlfriend. This is SO not happening again. 

Katie and Venus

Venus Williams appeared on the Katie Couric show yesterday. During her interview, Venus briefly discussed her experience with Sjogren's syndrome. Check it out:



Near the end of her interview, Venus became teary-eyed as she commented on her anxiety and frustration regarding her fatigue. Girl. We feel your pain. We really do. We have ALL sat in our doctor's office and asked, "What's wrong with me?!" We have ALL felt like a car that has run out of gas. We have all had people (like Katie) say to us, "But you're feeling pretty well now?" with a cheery but kind of clueless smile.

(Um. Katie: This woman pulled out of Wimbledon. If she was all "feeling pretty well", she would have played her heart out in that tournament.  Just FYI.)

Thanks to Venus once again for the courage to step up and bring awareness to our disease.

A Mother's Motivation to Keep Moving

Wonderful public domain image found here. 

In an earlier post entitled Summer Breezes, I opined that young adult sjoggies -- especially those with young children -- have significant challenges:

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 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.

I meant that, really. And this email from a young sjoggie mom makes me admire these folks EVEN MORE:

This email has been long in the making. I don't remember when but a while back you posted about how you empty nesters are better off than us with young children. When I read your post I was encouraged and said, "Yes! Someone gets how hard this is!" But as I kept thinking about it I realized that I am very lucky to have young kids at home. Most days I don't have the luxury of staying in bed, or taking an easy day when the pain is high. I have three young kids, that we choose homeschool, waiting on me. This fact pushes me. It makes me get out of bed on those tough days. It makes me rely on Christ to get through the day. I know that I am a better Sjogren's patient because I have little ones expecting me to still be a mom. Yes, it is tough and I appreciate other Sjoggies who admire what I do but I know that I need my kids to help push me to continue. I may otherwise sink into despair about how much my life has changed.

I know that we each have our own path but I am very thankful for my motivation to keep moving --to keep living life. I am also thankful for my three snugglers when the pain and fatigue is too great.

Girl. My hat is off to you, and to all parents who balance dealing with a chronic illness and raising a family.

While acknowledging the difficulties of her life, the reader gave me a bit of a different perspective on her challenges: that her children definitely had needs that pushed her boundaries of energy and pain, but that they also provided enormous positives in her life as well.

A child's love, a sense of belonging, the knowledge that one is needed and appreciated....... yes, I can believe that these things would outweigh the challenges of autoimmune disease.

Thanks for the insight.

Good One, Jennifer

Image found here. 

I was reading Jennifer Pettit's blog Understanding Invisible Illnesses the other day. Her most recent post entitled Weeds, found here, is pretty darned good.

I don't want to paraphrase everything that she says so eloquently with boring words of my own, but in her post Jennifer discusses our disease in terms of weeds. As in a garden. And not wanted.

BUT -- are they really not welcome? And if not, why not?

Head over there to see why I'm suddenly craving Lucky Charms.

One Step at a Time

I took my new hiking shoes for a little walk yesterday. The weather was beautiful beyond description: sunny, warm but not hot, a very light breeze, and low humidity. Lulu and I hopped in to Goldie and headed down the hill to a local park mid-morning, me wearing sunscreen, a hat, carrying my ergonomically correct cross-body purse, with Lulu perched on the drink holders in the back seat console. She rests her chin on my shoulder when she sits that way. I love it.

As we pulled into the parking lot, I promised myself that since this was the first time in a very very long time I had attempted a walk of any length -- that wasn't shopping -- that I would try my best to assess my energy levels and not go beyond them.

It's a lovely park with such a pretty little lake. There's wide and well groomed paths for walking. Perfect.

We headed out at a very slow pace. Lulu was in doggie heaven, zig zagging in front of me so that I'm sure that she covered at least five times more ground than I did. She greeted every other person in the park and sniffed every tree that we passed.

It was fun. It really was. My shoes fit perfectly and I didn't feel as though I was spending beyond my energy budget.

Until.

About two thirds of the way thru my walk, I realized that even such a limited distance was probably too far for me. Where did all my dumb stupid energy GO? Honestly. I hadn't been walking for more than fifteen minutes at a very very slow pace.

Lulu and I made it back to the car, and as I pulled into the garage just a few minutes later sweating buckets and brain foggy, realized once again.....

THIS DISEASE STINKS.

Yeah. I know that there are others out there with far more difficult and painful life situations than mine. And I am trying very hard not to take for granted the amazing resources that I have available for me.

BUT. THIS DISEASE STINKS.

I moped my way through the house and flopped into my hammock chair in the backyard and watched Lulu prance around in the grass as I alternated grumbling to myself with mopping perspiration. Mumble......grumble....DUMB STUPID SJOGRENS.....grumble...DUMB STUPID SWEAT......mumble...

Funny how after just a few minutes with my feet up in the hammock things seem to get better. Nicer. Happier.

Hammock magic works for a lot of different maladies, I decided. Especially for fixing my after-the-walk-crash grouchiness.

As my energy levels revived, so did my spirits.

Next time: err on the side of caution, Julia, I told myself. Because there definitely will be a next time.