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. 

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.

The adventures continues......

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

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'.

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:

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.

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...

Yeah.

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.

Yikes.

Oops.

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.

SCRAAAAAAAAAAPPPPPEEEEEEEEEE crunch crunch crunch.

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. 

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.

Truth

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

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

Saturday we paint. Sunday we rest.

I helped just enough to get paint all over my fingers. 

When I was given a date for my laminectomy surgery, I immediately began making lists: stuff to buy, stuff to organize, and stuff to do. The stuff to buy item was the most fun on the list. And stuff to organize? Hm. Maybe I'll get around to that in the next few days....

The stuff to do was rather entertaining, especially since what this actually meant was stuff for John to do while Julia supervised.

Yesterday, I crossed one more item off my stuff to do list. I figured that there was a chance that I wouldn't be completely recovered by our annual Thanksgiving hoo-rah, so there were a few projects that I wanted completed before my surgery AND before the kids and guests began appearing during the holidays.

We built this house in 1996. And even though the rest of the house has been painted and repainted inside and out, only two lonely little rooms remained wearing their eighteen year old initial coat of paint. One is the laundry room, and pfft. That thing can continue waiting for awhile. But the guest bathroom upstairs was really overdue.

Lucky for John, I had everything ready: the paint, paintbrushes, the painter's tape, the drop cloths made from decades old holiday plastic tablecloths, and lots and lots of Julia brand advice. Lucky for ME, John was willing to dive into a Saturday painting project using most of the above items except my advice. Go fig.

But it turned out great, and was done in a snap. Thanks Hon. Let's see, now what's next on the list.....

Ah, yes. I'm guessing the last time this tablecloth last had plates sitting on it was back during the great Ham-o-rama from Easter '02. 

I documented the event.  

Lulu thinks we goobered paint on the floor. 

Saturday Smile

I thought this was absolutely lovely:  Full Moon Silhouettes from Mark Gee on Vimeo.
Enjoy this -- and your weekend.

Full Moon Silhouettes from Mark Gee on Vimeo.

Impatience

I'm pretty good at crossing my eyes. Especially when I'm cranky. 

I cannot wait until my laminectomy.

Seriously.

I made that comment in a conversation a few days ago, and my friend laughed and said, "Oh, suuuuure you are.." rather skeptically.

No. Honestly. I really am!

She looked surprised. "Doesn't sound like much fun to me."

Well, yeah, surgery isn't going to be fun but neither is the pain and numbness and stumbling around which is why I'm having it.

Here's an example. I attempted to make a quick purchase in a craft store the other day. I knew approximately how much time and distance I could put in before the pain began and estimated that I could grab the stuff I needed and be back in the car without falling on my face. And it appeared that I planned correctly until I got to the check outs and saw the lengthy line of customers.

Drat. I didn't count on standing in line for an additional five minutes.

So as I stood there with my purse slung over my shoulder and my hands full of my purchases, I felt the pain begin in my hips and quickly progressed to burning numbness that stretched from my tailbone to my foot. Ow. After what seemed like forever, I was finally back in the car waiting for my leg and foot to wake up and the pain to subside, when a new and different thought occurred to me: that I should remember this incident and the pain. And how cranky I was. And how impatient I was just to have this all go away. That I should burn this memory indelibly into my brain.

Why?

Because when I am dealing with postoperative discomfort, I will need to remind myself why this surgery was necessary. The likelihood is high that I will complain frequently and at the top of my lungs (there's a warning for you, John honey..) that surgery was a really BAD IDEA. And that it's everyone else's fault that I literally have my butt in a sling.

Guys. I'm giving y'all an assignment. When I start writing about all the annoyances and aches and pains and wah-wah-wah-ing during my recovery, PLEASE remind me of this post. Tell me that there was a point in which I actually WANTED this. Be stern and firm: point out that I had proclaimed that surgery was my last option and that I would do anything -- anything at all -- in order to be able to walk more than one block before giving in to my stenosis symptoms. And that it was MY signature on those surgical consent forms.

Got that?

You will?

Awesome.

Lulu Update

Several of y'all have asked how my plastic-biteguard-eating puppy is faring.

She's fine, thankfully.

I was concerned about her yesterday after she refused to eat, appeared lethargic, and I could hear her tummy rumbling quite loudly. So I called her veterinarian. After a lengthy discussion in which we discussed options for her care which included x-rays (which he didn't recommend because the type of guard I use is not radiopaque; meaning it wouldn't show up on the film), ultrasound, potentially scope and or surgery.

Yikes.

What IS it about my dogs that they seem to want to eat weirdo things? Remember when our previous schnauzer ate all those rocks?! We feed our pets really good pet food. Seriously.

Dr. F. and I decided on this plan: I would get some prescription soft dog food; I would monitor her for vomiting, diarrhea, or if she seemed to be in pain. Since we talked in the AM, we decided to follow up with a phone call or office visit in late afternoon.

I was consumed with guilt. Usually I put the dumb stupid night guard thing in it's case immediately upon taking it out of my mouth. Until Monday when I threw it on my bedside table. And of course, Lulu took the opportunity to gobble it up.

After hanging up the phone with the vet, I hopped into the car and headed over to pick up Lulu's new food. And, because I felt responsible for the poor little thing's distress, also motored over to the pet store and bought new toys. And treats. And....well, you get the idea.

Upon arriving back home, I took Lulu out for a very short walk and right on cue, she pooped halfway through our route. It's amazing what we pet owners will do, isn't it? I took a stick and poked around in the stinky stuff looking for plastic before tying it up in a doggy doo doo bag. Ewww.

Didn't find a thing.

Meanwhile, Lulu had perked up considerably and when presented with new toys and different food, began to eat and drink and play as though not a thing had happened. And today, she's just fine.

See?

She's frisking around the back yard barking at the kindergarteners coming home from school right now, being her naughty little doggie self, thank goodness.

Today's Challenge

Just look at this little furry face.

She looks all cute and innocent, doesn't she?

Pfffft.

I'm 99% certain that this critter ingested my plastic dental night guard. I'm wondering what will happen to the puppy's innards as it makes it's way through her.

Hopefully it makes it's way through her...

I'll keep y'all posted.

Kittens and Kids are Therapeutic

As promised yesterday:



C'mon. Sing along with me: "Kaaan u feel the luuuuuuv tonight...."

Ebola: No Easy Answers

image found here

So I've been sitting on my hands for the past few weeks, trying to restrain my urge to blog about the Ebola outbreak. But after the head of the CDC blamed a nurse for "protocol breach", I can't stand myself and as a result my blogging fingers have been unleashed.

You've been forewarned. .::Julia slaps on old, yellowed nursing cap::.

There's no ignoring the fact that the Ebola virus is the cause of a global public health crisis, especially after WHO Director-General Margaret Chan made this statement:

MANILA, Philippines (AP) — The World Health Organization called the Ebola outbreak "the most severe, acute health emergency seen in modern times" on Monday but also said that economic disruptions can be curbed if people are adequately informed to prevent irrational moves to dodge infection. Continue reading here. 

You can read more about the disease caused by the Ebola virus from the WHO here, and from the CDC here. In a nutshell this is a deadly disease which has an average fatality rate of 50%; this and other information about EVD was taken from a WHO fact sheet:

• Ebola virus disease (EVD), formerly known as Ebola haemorrhagic fever, is a severe, often fatal illness in humans.
• The virus is transmitted to people from wild animals and spreads in the human population through human-to-human transmission.
• The average EVD case fatality rate is around 50%. Case fatality rates have varied from 25% to 90% in past outbreaks.
• The first EVD outbreaks occurred in remote villages in Central Africa, near tropical rainforests, but the most recent outbreak in west Africa has involved major urban as well as rural areas.
• Community engagement is key to successfully controlling outbreaks. Good outbreak control relies on applying a package of interventions, namely case management, surveillance and contact tracing, a good laboratory service, safe burials and social mobilisation.
• Early supportive care with rehydration, symptomatic treatment improves survival. There is as yet no licensed treatment proven to neutralise the virus but a range of blood, immunological and drug therapies are under development.
• There are currently no licensed Ebola vaccines but 2 potential candidates are undergoing evaluation.

I admire the health care workers from all disciplines who are willing to literally put their lives on the line in an effort to care for these patients and to work to contain the transmission of the disease. While I have had no experience in caring for patients with a virus in the same category as Ebola, there have definitely been times when I -- like millions of other health care workers -- knowingly and while wearing personal protective equipment, have put myself in extremely close proximity to dangerous disease pathogens. And came away unscathed and uninfected, I might add.

Thank you, God.

Back in the days before the hepatitis B vaccine, hepatitis was a serious problem especially for those people on dialysis. My first job as a dialysis nurse required that I work in a unit that contained both a hepatitis B positive and negative section. As I was oriented to my new job, I looked with dismay at a collection of photographs in the med room which were of the yellow eyes of all of the nurses who had contracted the disease as a result of working the hep pos unit. One of the nurses shrugged her shoulders and commented, "It's an occupational hazard." I was fortunate that the vaccine against hepatitis B began to be widely distributed. I was one of the first in line when it was offered to our department, ensuring that my eyeballs wouldn't be turning yellow as a result of hepatitis.

I  remember an incident back in the '80s when I was asked to draw a blood sample for a patient that had HIV/AIDS. What I recall most about this blood draw was not donning the mask and gloves, or the actual venipuncture. I was most struck with the "what if's" as I held that tube of blood in my hand after it was collected. I spent a few seconds just staring at the sample and wondered how many HIV viruses were zipping around in there. What if I tripped and fell while holding the tube and it shattered sending contaminated blood everywhere? What if I had tried to re-cap my draw needle and stuck my finger with that germy piece of metal? I looked back at the red sharps disposal box which was in the process of being double-bagged before being sent to biohazard disposal and imagined the potential disastrous outcome should that contaminated needle be mishandled. I thought about the implications for not only me, but for John and our children, should I become an AIDS victim.

That's a lot to think about. But I placed those dialysis needles and drew blood from AIDS patients because......If not me, then who? Who would care for these people if everyone refused?

I can identify with the staff members all around the world who are suiting up in protective gear to face the Ebola virus head and hands on. Which leads me (finally) to the topic of this rant post:

Don't be blaming health care workers for the spread of this or any disease.

Honestly.

As one who has strapped on more yellow paper gowns than I can count, I can tell you that the protocol mentioned by CDC director Dr. Thomas Frieden is front and center in the minds of anyone taking care of Ebola patients. That protocol is the only thing that protects those caregivers from serious illness. Mistakes can be made, it's true. But it would be a highly unlikely event given the gravity of the situation. Which leaves a few more important questions which have been asked by large numbers of doctors and nurses:

• What exactly IS the protocol?  And how can this protocol, once defined, be effectively communicated to all staff members (read this)? How can staff technique for Ebola isolation be evaluated on an ongoing basis? The National Nurses United study reported, "Out of more than 1,900 nurses in 46 states and Washington D.C. who responded, 76 percent said their hospital still hadn't communicated to them an official policy on admitting potential patients with Ebola. And a whopping 85 percent said their hospital hadn't provided educational training sessions on Ebola in which nurses could interact and ask questions." Yikes. 
• We are told that any hospital in the US should be capable of safely treating an Ebola patient, BUT how can a small country hospital duplicate the whiz-bang isolation equipment and procedures that are found in highly specialized units capable of biosecurity levels 4 and 5?  
• And most importantly: Are we certain that all modes of transmission of the Ebola virus are known?

In a news conference today, Dr. Freiden  attempted to backtrack and clarify his comments. He apologized for implying any negative judgment on the nurse infected which was a very good thing; however he followed that statement by giving two conflicting messages: First, that we do not know exactly how this nurse was infected. And secondly, he is confident that current protocol correctly implemented will protect healthcare workers.

Wait. What? How could one possibly be confident of protocol that has yet to be determined without question to be completely effective?

Whew. Take a breath, Julia....

Sigh. See y'all tomorrow. I'm thinking I need to post some cute kitten videos......

The Written Word: Good Medicine For What Ails You

I love it when science proves something I already believe to be true. Check this out from Scientific American:

Blogging--It's Good for You
The therapeutic value of blogging becomes a focus of study
May 19, 2008 By Jessica Wapner 

Self-medication may be the reason the blogosphere has taken off. Scientists (and writers) have long known about the therapeutic benefits of writing about personal experiences, thoughts and feelings. But besides serving as a stress-coping mechanism, expressive writing produces many physiological benefits. Research shows that it improves memory and sleep, boosts immune cell activity and reduces viral load in AIDS patients, and even speeds healing after surgery. A study in the February issue of the Oncologist reports that cancer patients who engaged in expressive writing just before treatment felt markedly better, mentally and physically, as compared with patients who did not..... 

....Whatever the underlying causes may be, people coping with cancer diagnoses and other serious conditions are increasingly seeking—and finding—solace in the blogosphere. “Blogging undoubtedly affords similar benefits” to expressive writing, says Morgan, who wants to incorporate writing programs into supportive care for cancer patients. Continue reading here. 

Here's a more recent article, this found in Scientific American September 15th 2014:

Science Shows Something Surprising About People Who Love to Write
by Rachel Grate 

Expressive writing is known to help assuage psychological trauma and improve mood. Now studies suggest that such writing, characterized by descriptions of one's deepest thoughts and feelings, also benefits physical health.....continue reading here. 

Journaling my life with Sjogren's Syndrome has without a doubt provided me innumerable but also intangible benefits. It's hard to explain, but I'll try.

When I write a post in which I discuss a problem, as I hit the "publish" button I feel better somehow. I think maybe the process of changing feelings into words, and hopefully words that form a coherent sentence, is another way for me to mentally process and digest the realities of living with autoimmune disease.  As I look at a published post, I feel as though my experiences and concerns are legitimatized somehow and when a reader echoes the same feelings, that sense of authenticity is multiplied at least by a factor of ten: It's not just me. This is real. Someone else feels the way I do and shares the same struggles.

Do you blog? Do you keep a journal? Is it proving to be helpful to you?

Miscellany

So I'm having one of those days when my brain just doesn't want to connect the dots.

To anything.

I figured if that's the state of affairs, I may as well roll with it. Today's post contains a few pictures that have no relationship to each other. At all. They're here just because I like them.

So in the above 20+ year old picture, my dad  is giving my cousin some advice, which my uncle obviously thinks is pretty questionable in it's value. Since I was the recipient of this and much more advice as well, it may help explain why I am how I am.

Moonrise over my friend Denise's place.

A whole gaggle? flock? of turkeys populating my kitchen windowsill.

See y'all tomorrow.

Yet Another Sjogren's Blog! Bubble Girl

A few days ago, I blogged about a Sjogren's blog, Blackbird at Night. And now I'm happy to report that I've discovered another! It's entitled Bubble Girl: Surviving Sjogrens and Food Allergies, and written by Christina. I thought a recent post, How Has Chronic Illness Been Treating You? contained some useful strategies to assist us when a new symptom of our disease presents itself:

.......I ask myself questions to get to the bottom of how I'm feeling about the new addition and ways I can strategize a plan of action. Here are some questions to ask yourself when faced with a new health crisis:

1. Will this affect my basic living needs ( eating, sleeping, shelter, dressing,social)?

2. Are there ways to treat this without medication?....continue reading here. 

You can find these blogs added to my Links sidebar.

Do you write a Sjogren's blog? Do you read another Sjogren's blog? If the author blogs with some regularity and the content generally stays PG rated, I'd be happy to add it to my list of useful links. 

Spooky

Ready to start the weekend with a smile? You are? Well, then. Enjoy the latest from Simon's Cat.

You're welcome.

An Accurate Assessment: "..an ever-present, fluctuating, and nonrelievable lack of vitality"

Ever play Sheepshead? According to the rules of the game followed by our family, the queen of clubs is all-powerful. She's the trump that trumps all trump. If that makes sense....

Thanks to the Sjogren's Society of Canada for tweeting the link to the results of this small study entitled Primary Sjögren's syndrome: fatigue is an ever-present, fluctuating, and uncontrollable lack of energy by Mengshoel AM1, Norheim KB, Omdal R, conducted at the University of Oslo, Oslo, Norway, and published in Arthritis Care Res 2014 Aug;66(8):1227-32. doi: 10.1002/acr.22263.

The study authors conclude:

CONCLUSION:
Fatigue in primary SS clearly differs from ordinary tiredness. Patients describe it as an ever-present, fluctuating, and nonrelievable lack of vitality being beyond one's own control.

I would agree with this study's conclusion (what an understatement), and I wish I had access to the entire study results rather than just the abstract. We need more and larger studies that examine the fatigue associated with Sjogren's syndrome. This fatigue is real, it is life-changing, and it is debilitating.

I've said it before and I'll say it again: Fatigue is the _most_ catastrophic symptom of this disease for me. Yes, I have dry eyes, and yes, I have a dry mouth and enlarged parotids. I also deal with peripheral neurophathy and have a seriously cranky GI system which is in all probability related to my autoimmune disease. These things impact my life, yes.

But fatigue?

Ah -- there's the trump card. The big one. The queen of clubs. The factor that is responsible for dictating the events of my entire life.

C'mon, research world. Get ON it. I really want to win this game.

SSF Patient Education Sheet: Health Insurance Tips -- Part 1

The Sjogren's Syndrome Foundation has completed another of it's excellent Patient Education Sheets:

Patient Education Sheet

Health Insurance Tips – Part 1

Obtaining healthcare reimbursement can be a major challenge. Having Sjögren’s places a high enough burden on patients, and adding the barriers patients face in obtaining health insurance reimbursement increases that burden greatly. This tip sheet should help you increase your chances of success when requesting reimbursement and appealing denials for a claim.

Know your insurance policy and what it covers.

• Note whether prior authorization is needed for a specific therapy or procedure.
• Understand co-pays and how much you will be expected to contribute to the cost. 
• Know whether your insurance company requires “step therapy,” which means you must try and fail one therapy before the next level of therapy can be covered.

Always appeal denials!

• Appeal a denial at every level. Most patients receive at least partial reimbursement upon appealing a negative decision from their insurance company.
• Involve your doctor in helping you respond to a denial.
• Familiarize yourself with your insurance company’s guidelines and deadlines for appeal. This information is usually included in the denial letter.
• Make sure you have the necessary documentation showing that your case meets the insurance provider’s guidelines and demonstrates medical need.
• Maintain records of your communication with the insurance company and document every time you speak or hear from a company representative. Record the person’s name, date, time and key messages from the conversation.
• Understand why you were denied, so you can address the reason(s) directly.
• If you are communicating with the Customer Service office of the insurance company and are dissatisfied with the response, ask for a Nurse Case Manager or a Supervisor who might be more understanding of your situation.
• When possible, demonstrate that treatment is more cost-effective than alternatives or non-treatment.Maintain copies of your medical records. You have the right to receive copies of all of your medical records. Note that you can be charged a copy fee.

Make sure your medical records are accurate.

• Maintain copies of your medical records. You have the right to receive copies of all of your medical records. Note that you can be charged a copy fee.

Include a Letter of Medical Necessity.

• A Letter of Medical Necessity is usually written by the physician explaining why a therapy or other treatment is medically necessary. This can be included with an initial claim or included in the n appeals process.
• A Sample Letter of Medical Necessity for dental treatment can be found on the SSF website under “Brochures and Resource Sheets.”

Know how your insurance company handles biologics if you are considering one.

• Insurance companies can exclude a drug from coverage or it might be a “tiered” drug, meaning one that is designated at a certain level for how much the patient must cover.
• If not covered, or if the patient coverage is too high, request an exemption along with an explanation about why you need the drug from your physician.

If you are still denied following the final round of appeals, contact the advocacy or patient assistance program for the company that produces the therapy. Most companies have divisions that take applications for financial assistance for their therapies.3

For more information on Sjogren's, contact the Sjogren's Syndrome Foundation at: 6707 Democracy Blvd, Suite 325, Bethesda, Maryland,  20817.

www.sjogrens.org

ssf@sjogrens.org

Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients. 

Check this out: Blackbird at Night Blog

I've only recently discovered a chronic illness blog written by Jane Waterman. It's entitled Blackbird At Night  and in it Jane discusses her experiences with Sjogren's syndrome, depression, and other invisible illnesses. Her most recent post is excellent. Check it out:

Beginning With Chronic Illness 

I feel like I’ve waited my whole life to begin. In my young life, there were smaller obstacles: a lack of confidence and encouraging remarks, as well as the feeling of being different and sensitive in a noisy, overwhelming world. In my twenties, there came other challenges like physical and mental illness. Sometimes, just being alive felt like a challenge. I’ve been waiting to begin this post for months, as if waiting for the correct alignment of the stars that will make it ‘right’. 

The problem is, life never feels quite right – not for a perfectionist in recovery – much less one who never knows on any day whether I’ll be able to get up and shine, or if I’ll be lying in bed feeling unfulfilled and miserable that I’m not beginning what I’m sure I’m meant to begin. 

The problem, especially when you’re ill, is finding the time to begin – knowing that within an hour you might have to lie down, and your life work will be interrupted for the millionth time (In fact, I had to lie down and rest in the process of writing this post). So, you get used to not beginning, as you figure that whatever you start will surely be interrupted. So you don’t begin...continue reading here. 

I'll Be Conscious by Tuesday

Have a good weekend, everyone? Ours was nice. It involved birthday cake, and picking pears, and eating far too much at far too many restaurants. Which means I'm happily bushed. Taking today to rest up.

See ya'll tomorrow.

This is a Far Better Funeral Story

Found here. 

Ever read The Bloggess -- Like Mother Teresa, only Better? I find her posts incredibly entertaining. And, often I'm amazed that even though I must be at least twenty years older than she we often have disturbingly similar trains of thought. Except I don't drop the F bomb. Ever.

Language choices aside, this gal tends to see the world from an interesting perspective and I love her sense of humor. She also writes those occasional touching, authentic, from the heart posts. Like this one:

Meemaw died yesterday, at the age of 80.
(..............)
Meemaw had a penchant for telling her favorite stories over and over, but she told them with such joy that we always laughed like it was the first time.  Sometimes it was the story about Victor getting his head stuck in a fence at Disneyland.   Sometimes it was about breaking her back after falling out of a moving jeep while shooting at rabbits.  Sometimes it was about picking cotton, or rolling cigarettes, or digging up a corpse, or meeting the man of her dreams as a 17-year-old waitress and marrying him 10 days later, or traveling the world as the wife of a career soldier, or making dresses from feed sacks. ...Continue reading here. 

What a sweet tribute. Check it out.

SSF: Upswing in Diagnosis of Men and Children

It seems that so often I'm writing posts in which the tone of my message is frustration at the lack of research and education about our disease, so I am glad to have a chance to share a bit of positive news regarding Sjogren's awareness. Read this Q and A written by Frederick B. Vivino, MD, MS, FACR and found on the Sjogren's Syndrome Foundation "Conquering Sjogren's" blog.

Thank you for all of your years of hard work, Dr. Vivino. We are all benefiting from your dedication!

Is there any speculation as to what’s driving this big upswing in the diagnosis of men and children with Sjögren’s?

My gut feeling is that it has to do with the improvements in awareness and medical and dental education in recent years. The Sjögren’s Syndrome Foundation (SSF) has spent years trying to train the physicians and nurse practitioners about how prevalent and serious the disease is. We finally have a celebrity who unfortunately was diagnosed with Sjögren’s and although nobody likes to see somebody become ill, it has done a lot to help the entire public realize how serious it is, particularly the idea that people look a lot better than they feel and that it may take years to diagnose it unless you take the symptoms seriously.

I can tell you at the University of Pennsylvania, where I work, the oldest medical school in the United States, we only started giving our first Sjögren’s lecture to the first year medical students about four years ago. And that was only after years of me fighting with the curriculum committee to get it included in the rheumatology course for the first year students. So, we’ve made a lot of progress and I think that’s an example of the benefits of all this work.
-Frederick B. Vivino, MD, MS, FACR

THIS Was Really a Stupid Thing to Do

Yeah. It looked almost exactly like this one found here. 

I think that enough time has elapsed that I feel as though I can confess my latest um...... faux pas without alternating between crying and laughing.

Hoo boy. This one is a doozy. Would someone please explain to me why I unfailingly do weirdo things? Hm? Why??

So. I was at a reception following a funeral. A FUNERAL, for goodness sakes. We arrived at the reception site which was a nice home and walked into the foyer which featured a lovely table upon which was placed a large floral arrangement, a guest book, and several pens.

Oh, I said to John. A guest book! How nice.

I grabbed a pen, opened the book and signed our names. In ink. In indelible bold black ink. There for all of eternity. Yep. John and Julia were there, all right.

But.

As I closed the book, I noticed that the cover was made of gold-toned vinyl. And had 50th Wedding Anniversary embossed on it. Yes. I had signed our names to this lovely deceased lady's precious memento from her fiftieth wedding anniversary. Which had taken place twenty plus years ago.

I was aghast. Looking up at John I whispered (which probably sounded more like a panicked screech), I just signed this guest book!!

He looked at me.

This was NOT a funeral guest book! This was Nettie and Herb's FIFTIETH WEDDING ANNIVERSARY PARTY GUEST BOOK!! 

He did a face-palm and his shoulders began to shake with silent laughter.

STOP THAT! WHY didn't you tell me not to do it?! WHY? You KNOW what I'm like!

I dragged John into a corner where I sipped coffee to calm my nerves while John kept laughing.

What a supportive husband.

I mulled things over for a few minutes while I decided what to do; rationalizing my actions all the while: The book was the first thing I saw coming into the house, it had pens placed conveniently next to it, and it was positioned on a table in the foyer, for cryin' out loud.... Meanwhile, John had found someone to converse with so I was left to fret on my own.

After I drained my coffee cup, I emerged from my my self imposed exile, walked over to the foyer, grabbed the book and placed it on a different table where there was a display of pictures and memorabilia. Where the stupid thing should have been in the first place. I saw my friend walk past the foyer, and taking a deep breath, decided that I had better just 'fess up and get it over with. Hanging my head, I took her arm.

Girl. I'm so sorry.

Her eyes were puffy and reddened from crying. "Thanks, hon. I appreciate it. But it was for the best."

No, you don't understand. I just did a really stupid thing.

She looked quizzically at me.

I took a deep breath. I just signed your mom and dad's 50th wedding anniversary book. I'm so sorry...

She threw her head back and roared with laughter, then caught me up in a big hug. "Girl!! You made my day. THIS is why I love you! I don't know anyone else in the whole world besides you and me that would do something like that!!" Still chortling, she went out into the reception to share what I had done with her daughters, which set off another round of cackling and giggling. Of course.

I worked up the courage to greet others at the reception, who either hadn't heard the story, or had other more significant emotions to deal with. Thankfully the rest of the evening passed rather uneventfully, but as we said our good-byes, my friend hugged me again and said, "Thank you."

I'm here for you girl. Always.

"Yeah, well, thanks for that too, but what I meant to say was thanks for doing something really doofus. I loved it and I know that my mom would have been happy to know that we were laughing!"

Sigh. That's it. I'm not going anywhere. Ever again.

It's Expensive to be Chronically Ill

A reader sent this question to me recently, and I need your help in answering:

"I was wondering if you can point me towards some site or groups that can help financial assistance with those afflicted with disease & that are on Medicare/SSN?"

There's no denying that becoming disabled from any disease or incident can be catastrophic not only to the body and soul, but also to the family finances. Being sick is expensive. Especially for the long term. Even though the assistance from Medicare and SSI is greatly needed, many times these amounts don't begin to cover some of the biggest expenses.

I would guess that varying services and programs exist depending on country, state and city in which the person resides. I did a preliminary search on Google, and found this interesting bit. Ms. Grahm makes a few good suggestions, especially enlisting the help of your doctor and a medical social worker:

Where to Begin: Finding Help During Chronic Illness by Michelle Grahm

1. The first thing I recommend doing is talking to your doctors about your concerns.  Doctors can prescribe various services such as physical and occupational therapy.  Sometimes their recommendations are covered by your insurance company.  They can also put you in touch with medical social workers.  Which leads to #2.
2. I have found that a knowledgeable MSW is your greatest resource during a health crisis.  A good social worker will recommend government assistance programs and provide applications to charitable organizations.  They should answer your questions, help you navigate the system, and become your advocate.  In fact, consulting with more than one medical social worker will increase your chances of finding all available programs and services.  For example, one social worker recommended a discount program to us at the hospital called CICP.  Another social worker submitted an application for Project Angel Heart, a nonprofit organization providing meals to cancer patients. Continue reading here..

Help us out, here people. Any suggestions?

Fall Freebies

I love glamming up the house for the holidays. Doesn't matter which one, any holiday will do. It's a great excuse for asking John to lug around big cardboard boxes filled with unique holiday junk decor. And bless his heart, John willingly drags around boxes and furniture at my whim.

What a guy.

So even though I have multiple cartons marked "FALL" on their covers, it always seems that I want something new to add to my collection. However.....

I've been spending money like crazy for stuff to get ready for surgery, so thought I'd best make do with what I already have. So I was scrolling through the Pinterest site looking for ideas, when I came across these two magic words: FREE PRINTABLE.

Woo hoo! Sure enough, I clicked through to the various sites clearly marked Free Downloads (for personal use only) and found oodles of beautiful fall prints. What could I do with these babies, I wondered.

I have seasonal stuff in the attic, but also in a closet upstairs in what used to be one of my daughters' bedroom. I've commandeered that space as mine to fill with junk valuable seasonal accessories for the home. I thought about that closet as I looked at the free printable site, and remembered that I had several empty picture frames just collecting dust in there.

Well, now......

Literally ten minutes later, I had this:

And this:  

Lovely free printable images found here. 

Old picture frames. Leftover card stock paper. Free images. 

Boom. 

Oh, John, honey? I think I've just saved us a bundle.