Wednesday, October 29, 2014

It's THAT Time

Well, folks. Today's the day.

Yep. Surgery day. Which means an anesthesiologist will be escorting Julia into dream-land.

Woo hoo! I love happy gas.

I had my eyebrows waxed by one of those fancy schmantzy spa places just for this occasion. When my anesthesiologist slaps that mask over my schnozz, I want him to think, "Hey. Nice eyebrows." And then I'll Zzzzzzzzzzz may way to sleep.

Ever wonder what you look like when you're sleeping?  I do.

But I'm a realist. I know better. How much you want to bet when I roll into recovery room I'll look like this?

I'm thinking that I may take a few days off from blogging after surgery, but I'm sure y'all understand. 

I'm a weirdo unmedicated. I can't imagine what sorts of goofball stuff I'd be writing when on post-op narcotics. Wouldn't be pretty.

See y'all soon. 

Tuesday, October 28, 2014

Jennifer's Turn

Jennifer Pettit, author of Understanding Invisible Illnesses blog, has written a guest post at my request. I'm very appreciative of her efforts in spite of the fact that she totally ignored my specific instructions NOT to write about me.

It's been such fun having Shawn and Jennifer here. As y'all read this they are winging their way back home to Philadelphia. I'll miss them. Come back soon, you two!

Enjoy Jennifer's post:

The great northwest is home to a legend.  Bigfoot is a humanoid primate of lore, said to roam many areas of the Earth including the Pacific Northwest of the United States.  He is celebrated in local art, oral history, and advertising.  But most importantly, his legacy and fame is celebrated in the much-loved social hotspot, The Big Foot Inn in Washougal, WA.

I may be using the term "loved" loosely.
There are those who travel in search of these storied beasts, attracted perhaps by the opportunity for fame if they would be able to find conclusive proof of the beast or even by pure fascination with the creature itself.

I cannot say that I share in this passion.  Whether "bigfoot" exists or not - and I have no idea if it does - I am not the least bit interested in tracking it down.  So what would bring me to this epic venue for dinner on a Monday night?  Who else but our own legendary Julia!

Four years to the day since I last saw our Sjogren's Shaman for a few brief hours during her visit to Philadelphia, I arrived on the west coast to spend nearly a week enjoying her loving hospitality.  And believe me, my husband and I have been fed, feted, and fussed over by an entire entourage.  We have feasted on local fare and climbed waterfalls, been educated about how the area was settled and even learned to drive a Prius (Goldie was well behaved for her nervous newbies).

Four years is a long time, and a lot has changed.  Both Julia and I have begrudgingly received several additional diagnoses.  I recently had surgery and Julia will be having one this week.  I've had two job changes and Julia had weddings for two of her children.  Julia loyally maintains her blog, and I've drifted into a phase of my life where I'm taking a break from the activism world.

Four years also allows time for relationships to deepen.  Shawn and I had been dating four years when he decided to propose.  High school is four years, as is college (in most cases).  And in the past four years Julia and I have grown closer and closer.  I may be less actively involved in the Sjogren's world these days but that doesn't mean Sjogren's is less involved in mine, and having Julia around - who not only understands living with Sjogren's but also gets that Sjogren's isn't my whole life - means the world to me.  It amazes me that we even connected in the first place, and I never imagined the way our relationship would develop.

Four years ago an offer was made to play host for us if we ever found ourselves westward-bound, and we finally took Julia up on it with this trip.  Spending time with her, her husband, and her friends has been thrilling.  I'm so happy to see the great people she has in her life, who have been all too eager to warmly welcome us into their fold.  I think these type of people are just drawn to Julia's side, as was I.

There is no consensus on the existence of bigfoot.  He may be real, maybe he's a hoax, or maybe someone unwittingly pulled a hoax about something that's actually real.  There are a lot of things in this world we can't know to be truths which is why it's all that much more special when we can see evidence that some things are real.  So I am happy, even relieved, to report that support is real.  Love and concern and kinship are real.  They don't exist everywhere, they're not in present in every relationship we have, but they are out there.  It is true that we can have them in our lives, and I'm grateful for all the people in my life who remind me of this truth, from Shawn to my parents, and in our unique bond, to Julia.

Monday, October 27, 2014

The adventures continues......

Sunday, October 26, 2014

Guest Post: Shawn Pettit RN on My Wife, the Sjoggie

As I mentioned yesterday, Jenny Pettit, Sjoggie and author of the blog Understanding Invisible Illnesses, and her husband Shawn are visiting us.

We're having WAY too much fun.

I love having guests, but even better -- guests that I can cajole into writing a guest blogpost. Shawn readily agreed and asked what topic I wanted him to write about. I told him he could choose, as long as I was not the subject material. What follows is his excellent response.

Well done, and thank you Shawn. You provide not only the candid perspective of a husband, but also RN and caregiver:

WARNING: Because I want to get an unbelievable amount of information out of my head, some of this post might be a little rambling. Bear with me. 
So I've been summoned by the lovely Julia to write a guest post, which of course started a devious line of thought for me. "Hmm, what can I write about my wife that will turn her twelve shades of red?! Hee, hee, hee." However, as I write this, Jen's looking over my shoulder, so maybe I should behave (a little bit). 
Jen and I have known each other for almost fourteen years, and have been a couple for nearly as long. In all seriousness, we're perfect for each other, mostly because our collective insanity is so complimentary. There's also the strong possibility that we're too crazy for anyone else, but we don't touch on that too much. 
Part of what makes our marriage work is our surprisingly symbiotic relationship. On the one hand, Jen is extremely analytical and an accountant, which benefits both of us, as she manages our finances with expert precision and keeps us relatively organized (No kidding, the number of lists she has on Google Keep is staggering, but each and every one serves its purpose). On the other hand, I've been blessed with a compassionate personality (or so I'm told; there's still occasions where I wish bad things on drivers around me on the road) and a knack for physical sciences. This has benefited me in my pursuit to become an EMT and, later, a nurse. This benefits Jen as I work my hardest to be a caregiver as well as a husband.  
As people learn about me and my beautiful/crazy/intelligent/slightly neurotic wife, they come to learn a few things. Over the years, I've doggedly tried to explain the nuances of Sjogren's Syndrome to, well, everyone. Part of this explanation includes symptoms, eventual complications (the increased chance of lymphoma is what catches everyone's attention), and what it's like for Jen.  
This leads to one seemingly obvious conclusion for people who hear this story: "Wow, she's lucky to have a nurse for a husband!" Yeah, we agree with that statement now, but trust me, I had A LOT to learn over the years. 
When Jen was first diagnosed, I had no inclination to do ANYTHING in healthcare. Part of that is the simple fact that everyone in the healthcare industry need to do a better job of promoting our professions to kids. Even now, most nurses go into nursing because of a family member or a specific experience that steered them towards the job. We're getting slightly better at this, but way back in 2001, I had no clue about nursing, EMS, or anything else in healthcare. So when Jen was diagnosed with Sjogren's early, at age fifteen, I had no clue how to react. Basically, all I could think of was to hold her hand and tell her it was going to be alright, all the while thinking that I didn't know anything about this disease and that I could be talking out my ass. 
The first step to become an educated boyfriend, and later husband and caregiver, was getting the right information. Next thing I know, I'm reading articles, books, and websites with pertinent information about Jen's multitude of conditions (Sjogren's, Raynaud's phenomena, dysautonomia, localized scleroderma, PCOS, and endometriosis) and telling EVERYONE about it. If I'm gonna be educated, then by George, everyone else is gonna be too! I've found that this is what many people do when they find out a loved one has a health condition. 
The next step is a little harder. Becoming an effective caregiver involves becoming a stronger person internally. There have been many instances where Jen has been in pain, has been extraordinarily ill, and has been emotionally drained by her conditions. Those times are difficult, not just for her, but for me as well. All I want to do is make everything stop hurting, make everything easier, but the sad reality is that you have little to no control. Those are the times that you begin to learn how to be compassionate and how to take control of what you can. Even something as simple as figuring out what's best for Jen to eat when she's having a flare (a sudden exacerbation of symptoms) can make the whole world seem better. 
The thing is that, while I'm heading through my professional journey of becoming a healthcare professional (first an EMT, then a nursing tech, and finally as a nurse), I was getting my most effective training right at home. Sure, over the years, I've had fantastic instructors and mentors, each of whom provided me with incredible support and advice when I needed it. However, none of them could teach me the compassion, the patience, and the desire to provide excellent care that I learned simply from my time with Jen. And I'm still learning! 
In all fairness, my ambitions to become a nurse and to pursue bigger things comes from this relationship, even as she grouses in my ear and threatens me with no cake. My passion for healthcare was influenced by both my desire and responsibility to be an excellent caregiver as well as my observations of both excellent and terrible healthcare professionals (to this day, one of my biggest pet peeves is a physician or nurse who simply doesn't care about doing their job well). 
Today, I'm much more confident in myself as a caregiver, but it took a lot of time and a lot of information before I felt like an effective caregiver. Some people do think that being in healthcare made things easier, but even healthcare professionals go through the same feelings when a family member or friend is afflicted with a chronic condition as anyone else. Most nurses and physicians that I know still don't know much about Sjogren's, despite its increased prevalence.  
It really is true that sometimes patients and caregivers know about their health conditions more than their providers, which is something that I try to keep in mind as I work and as I present information on Jen's conditions. On the one hand, as a nurse, I don't know everything and there might be information that my patient or their family might have that will help me provide excellent care. On the other hand, as a caregiver, I need to keep in mind that not everyone knows what these conditions entail and, conversely, that sometimes they might have some information that I don't. 
It's been a long journey to this point, for sure, and just like any relationship, there have been bumps in the road. I can say one thing for certain: there's no way I would have become a good nurse without Jen. Her influence helped me grow as a caregiver and, later, as a healthcare professional. Even when she's threatening to make me eat prunes or I'm making a concerted effort to make her groan with exasperation, we complement each other and make each other better. I know sometimes she feels like she might be too much for me to handle, but, if anything, that just makes me love her more. And that makes all of the time caring for her worthwhile.
Of COURSE we had to visit Powell's City of Books

Saturday, October 25, 2014

Coast to Coast Sjoggies

Philly photos mine. What a great trip. 

Have y'all noticed that my posts for the past week or so have been brief and contain very little Sjogren's related info?

I've been slacking off. Which is the prerogative of the owner of a blog, I guess.

So the reason for my lackadaisical posting is that I've been preoccupied with a few things, one being getting the house and my frame of mind situated for my surgery next week. But another reason is been a great deal of fun.

Fun is a very good thing.

Some friends of mine made the long flight from Philadelphia to good ol' Portland to come see us, woo hoo! They're a wonderful young couple that I met awhile back while Terese and I had made a trip to the City of Brotherly Love. I thoroughly enjoyed getting to know Jenny and her husband Shawn, and we've stayed in close contact ever since. Over the years of our friendship, I realized that despite our age difference -- she's just a young thing -- we have so many things in common. She too deals with Sjogren's syndrome and other autoimmune disease but more importantly, my Bratty Inner Child Julia has a much younger East coast clone: Bratty Inner Child Jennifer. How amazing is that? We simply had to meet.

It was four years ago almost to the exact date: October 23rd, 2010:
I have enjoyed corresponding with sjoggie Jenny Pettit, author of UII - Understanding Invisible Illnesses, for a few years now. She is an intelligent, articulate and enthusiastic young woman who juggles her significant autoimmune disease, career, marriage, volunteer work at her church, advocacy campaign for people with invisible illness in her workplace, and in her spare time? Writes a blog. 
Yes, she is an over-achiever. 
When I realized that I was traveling to Philly for the webinar project, AND that Jenny lives in Philadelphia, I was hopeful that we could arrange to meet in person. And we did! Jenny and her husband very generously offered to pick Terese and I up at our hotel.
It was easy to identify the attractive young lady that walked into our hotel lobby - we hugged, and began yakking immediately. It was great - after all of our message exchanges and reading each other's blogs, I felt as though we had known each other for years. The four of us spent the entire evening together and what a gift that time was.
Yes, we had many laughs and stories to exchange, but what was special for me was the opportunity to spend time with someone who, although is disgustingly much younger and far more attractive than I, actually shares many of my same circumstances......continue reading here
Jennifer and her husband Shawn arrived on Thursday and we -- meaning John and me and Terese and Greg -- have kept these two hopping. I'll post more about our adventures later, so stay tuned.

Jennifer? Honey? Remember our conversation last night during which you told me I had your permission to blog about your visit?

Bwahahaha. Just sayin'.

Friday, October 24, 2014

Want to Know More About Lupus?

As y'all know, frequently autoimmune diseases travel in packs. So many of us have Lupus in addition to Sjogren's Syndrome. Here's a good introductory video with Lupus basics:

Thursday, October 23, 2014

I Wish I Could Do This..

Don't you love autumn? I do. I know, I know - many of us dread the weather turning chilly and triggering their Raynaud's symptoms, but for me fall means that my cutaneous lupus goes into hibernation.

Woo hoo!

Enjoy this autumn-y video.

Wednesday, October 22, 2014

She's at it again....

My fave. Made with coconut milk. Found here

My friend Bev, that is.

I love this woman to death. You may recall a few of our previous adventures, the most recent involving her detonating a bear bomb in my car.

Yesterday, Bev picked me up bright and early, we grabbed a coffee, and headed into town. Bev was driving her trusty white mini-van. Gosh. I wonder how many hours we've spent together in that car over the years. Most of those hours were spent laughing, I'll bet. 

True to form, we sipped mochas and yakked as we maneuvered our way around town. And true to form, probably covered two or three times as many miles as necessary since we tend to wander a bit. Actually, we wander a LOT which usually is a good thing. We find the darndest things that way.

We did some shopping then decided to have lunch, so Bev pulled her van into a parking spot. One of those long low concrete barriers was at the head of the spot. We were hooting with laughter over something she had said, also true to form, so didn't hear that low, grinding, scraaaaaaaaaping sound...


So two hours later, after we had lingered over our meal and coffee and conversation,  Bev strapped herself in and put the van into reverse. This time the low, grinding, scraping sound was much much louder.



Bev threw the thing into park and hopped out. She cautiously peeked around to the front of the car, stuck her hand under the bumper and retrieved a long black plastic chunk of something.

"Thank goodness. It's only this. Whatever this is." She tossed the thing into the back seat and we set off again.


Um. Bev? I think there must be something else.....I stepped out of the car and buckled over with laughter as I saw fully half of her front bumper on. the. ground.

"Oh, man. Rick is SO buying me a new car!", was her response. Which made me laugh even harder.

Long story short: Bev had no one available to come and pick us up, so decided that we had to get the van home by hook or by crook. Which we accomplished by kicking the dragging bumper until it became lodged onto something on the frame of the van -- who knows what -- which kept it dangling just above street level. We creeped home avoiding bumps and potholes, which is quite a challenge if you've ever driven I-5...

Girl. Don't bother driving into my driveway, I told her as we approached my house.

"You're just worried this piece of junk will die right in front of your living room window!" she snorted and wiggled her fingers good-bye as she scraaaaaaaaaaaapped her way home.

The thing is, this is not a particularly funny story. But it's amazing how ordinary happenings can turn into extraordinary when shared with a friend, right?

Bev is an extraordinary friend. I'm lucky to have her. 

Tuesday, October 21, 2014

Diphenhydramine And Restless Leg Syndrome

The culprit. 

Did YOU know that Benadryl (diphenhydramine) can exacerbate restless leg symptoms?

I didn't. But now I do.

I have been taking Requip (ropinirole) for my RLS with good results, but over the few weeks my symptoms have been getting progressively worse. It seemed a vicious cycle: my legs would keep me awake, I would take something like TylenolPM which contains dipenhydramine, I'd conk out due to it's sedating effects, but the next night my RLS would feel even worse. And I wouldn't get any sleep. So I'd take the TylenolPM to knock me out, which would....well. You get the idea.

I just couldn't figure out why my Requip suddenly stopped working, so I did a bit of reading and came across this gem found on a Medscape article discussing treatment for restless leg syndrome:
Discontinuation, when possible, of medications that cause or exacerbate RLS, such as selective serotonin reuptake inhibitors (SSRIs), serotonin-norepinepherine reuptake inhibitors (SNRIs), diphenhydramine, and dopamine antagonists.
Well, now. Made complete and total sense, and fortunately as soon as I quit taking products containing diphenhydramine, my symptoms receded and good old Requip was back on track once again.

Lesson learned.

Monday, October 20, 2014


Today's post courtesy of I'm not right in the head.

Yep. Sums it up nicely. See y'all tomorrow.