Sunday, March 29, 2015

Real Mobility

Wow. Infinite awesomeness: the Kenguru wheelchair-accessible electric vehicle. Found on The Kid Should See This:

Made especially to give wheelchair users a way to drive independently, the Kenguru Wheelchair-Accessible electric vehicle goes up to 25mph with a range of 45-60 miles, perfect for driving to the grocery store or for meeting up with friends at a local restaurant. With an estimated 1.7 million wheelchair users in the US, this zero-emission concept car could make a difference for many people when it goes into production.

Saturday, March 28, 2015

In Search of Happy

So I was sitting here thinking about what the subject of today's post should be. I'd really love to be able to share a hilarious anecdote involving some kind of weirdo Julia et al antics, but alas. I can't.

This is sad.

After indulging in a period of gratifying "woe-is-me-my-life-is-so-boring" musings, it has occurred to me that the reason my life seems so boring lately is because IT IS BORING.

Which is even more sad.

I realize that my weirdo adventure wings have been clipped over the last three weeks by a nasty group of germs that have populated my innards and confined me to the house. Thankfully over the last few days I'm feeling myself slowly return to - hm. I was going to say "normal", but I don't think I know what that is anymore. I suppose what I'm trying to say is simply that I feel better. And that it's possible that there may be a few less boring days ahead.

This is NOT sad.

"Not sad"? Instead of "HAPPY"? Oh, Julia, girl.......

I realized that I was in dire need of an attitude adjustment. I tried a few of my usual spirit lifting strategies: looking at dopey YouTube videos, sipping a cup of fully caffeinated coffee, reading a few chapters of a book; but still felt stuck in a blue funk. I irritably put my laptop aside and began to shuffle around the house. After a few minutes, I realized with surprise that I had grabbed my camera in my wanderings and didn't even notice it. So I slid the switch to "on" and began to idly snap pictures.

As I clicked my way from room to room in the house and then out to the deck, I felt my attitude begin to change.

Whoa. It's a beautiful day, I realized.

Our Easter Ham-O-Rama is only a week away. I LOVE the Ham-O-Rama.

It won't be long before we can head over to the Saturday market and buy some enormous flower baskets to hang on the front porch.

Pinky! You've survived yet another winter. Looking good, buddy.

Guess I've survived another winter too.

I looked affectionately at my ancient DSLR camera and thought yet again how comfortable and right it feels in my hands. Goodness knows, Canon has spent plenty of time with my nose mushed up against it's viewfinder and I've spent countless hours downloading and editing it's images.

What fun.

I have no illusions of grandeur about the quality of my photography. It is and probably will always be of a pure amateur quality. Which for me, is entirely beside the point. I enjoy capturing those day to day images of the people and things and surroundings that I love.....and that makes me.....

......happy. HAPPY. Ahhh. There's my attitude adjustment.

Friday, March 27, 2015

I'd Want a Big Chocolate One, Of Course.

@LAlupusLady recently sent this intriguing tweet out on Twitter:

Does anyone "celebrate" the day they were diagnosed w/ #Lupus?
33 years at a 3PM Drs. appointment heard "you have Lupus."

Hm. I had to think about that. Do I "celebrate" the date of my Sjogren's diagnosis? My first reaction was, Heck NO. I don't "celebrate" anything about autoimmune disease. I don't even know the actual date of my diagnosis. I suppose I could look back in my records...


After a little reflection on how stressed I was for those months before my diagnosis, I would grudgingly admit that while my diagnosis was not something to celebrate, it certainly was a relief to have a specific name for my problems.

I never thought about commemorating the day of my diagnosis. Did you?

Hey. If marking my diagnosis day means cake......I'm all for it. Like this one:

I wonder if it comes in a gluten and dairy free, low-sugar version?

Thursday, March 26, 2015

Sjogren's Quarterly: Treating Sjogren's - The Future

Over the years, as I've read the results of (far too few!) studies looking at various aspect of Sjogren's syndrome, the study authors conclude with a phrase similar to this one: more research needed

No kidding. It's disheartening to feel as though very little progress is being made in the diagnosis and treatment of our disease.

I was encouraged, however, as I read the Sjogren's Quarterly newsletter from the Sjogren's Syndrome Foundation Winter 2015 edition. It contains a piece entitled Treating Sjogren's - The Future! which reported progress made in increasing clinical trials, targets for new therapeutics, and validation of outcome measures for Sjogren's. Here's a few excerpts:

By Theresa Lawrence Ford, MD, Chair SSF Clinical Trials Consortium:  
While many barriers exist in getting new therapies to market in Sjogren's, tremendous progress has been made or is underway. Several factors are contributing to the increased interest and subsequent plans for clinical trials in Sjogren's, including the development of biomarkers; novel diagnostics that are coming onto the market to speed up and increase the precision of diagnosis as well as the numbers of those diagnosed; internationally-accepted classification criteria becoming finalized over the next year; and internationally-accepted outcome measures finally being in place.  
By Denise Faustman, MD, PhD:
Sjogren's is poised to benefit from the new era of drug development that we are entering for many diseases with the increasing possibility of tailoring therapies to a specific patient's needs. Therapies of the future most likely will be highly individualized by targeting specific signs and symptoms of Sjogren's...........In addition to new biologics currently under investigation, a combination or sequential use of different therapies may be found most efficacious. As mentioned earlier, a study published in 2014 by Salvatore De Vita et al using belimumab followed by rituximab demonstrated initial success and projected potential long-term benefits. We look forward to a better future in which more studies will expand our knowledge of the science exponentially and lead to more precise biomarkers and potential targets for therapeutics. That future is not far away. 
And this by Raphaele Seror, MD, Steering Committee, EULAR Outcome Measures in Sjogren's Syndrome:
Clinical trial design has made a major leap forward with the final validation of the EULAR-endorsed outcome measures known as the EULAR SS Disease Activity Index (ESSDAI) and EULAR SS Patient-Reported Index (ESSPRI). The validation study, published on March 2014, concludes a nearly decade-long effort by researchers to develop outcome measures that could be embraced consensually by the international community at large. The ESSDAI includes the 12 following domains: constitutional, lymphadenopathy, glandular, articular, cutaneous, pulmonary, renal, muscular, peripheral nervous system, central nervous system, haematological, and biological. The ESSPRI includes dryness, pain and fatigue that were considered by patients as the most important areas for needed improvement. 
You can read the article in it's entirety here which includes citations of the studies referenced, however keep in mind that this periodical's targeted audience is rheumatology health care professionals and the language and terms used reflect this.

I found the section by Dr. Faustman entitled Targets for New Therapeutics - The Science particularly interesting. In it, she describes potential therapies under investigation or being considered for use in the treatment of Sjogren's syndrome:

B cell inhibitors or modulators

  • rituximab
  • epratuzumab

BAFF/BLyS targets

  • belimumab
  • VAY736

T cell regulation and cytokine targets

  • abatacept
  • baminercept
  • BCG vaccine
  • tocilizumab

Genetics and epigenetics

Hope for more research resulting in increased knowledge and improved treatment of Sjogren's syndrome is a very good thing. 

Wednesday, March 25, 2015

It's Contagious

Oh, man. I feel terrible. Terribly guilty, that is.

Yes, I am still recovering from the flu but the actual reason that I'm feeling terrible is that it appears John has caught my germs, poor guy. I've tried to contain my nasties by sneezing into my elbow and using disposable tissues and covering my cough and we're running the dishwasher on sanitize, but I suspect that after two weeks of this stuff, we've reached some kind of tipping point ratio of people to viruses inhabiting our house. So it was probably inevitable -- John would have to join me in my little Kleenex world.

He's soldiering on, however. Even though he's staying home, he's still working from his laptop and conducting his meetings via conference calls in-between sneezes, coughs, and nose blowing. What a guy. In-between work duties, he puts his feet up to recharge.

Lulu's all confused. "Wait. Aren't YOU the one that takes afternoon naps?"

I've decided that it's time for me to kick into solicitous wife mode. Along with keeping John supplied with soothing hot beverages, tissues, and the usual sickie stuff, I'm thinking that it's important to attempt to supply sources of therapeutic laughter too. Like this:

How could you not feel better after watching that?

Tuesday, March 24, 2015

AARDA's National Survey Examines Prevalence of Autoimmune Fatigue

In a story released yesterday via Newswise, the AARDA announced results of a large national survey:

“In this busy, busy world, it’s normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal,” said Virginia T. Ladd, President and Executive Director of AARDA. 
“The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”.....continue reading here
I couldn't agree more with both Ms. Ladd's quote as well as the survey findings:
Fatigue described as “profound,” “debilitating,” and “preventing them from doing the simplest everyday tasks,” is a major issue for autoimmune disease (AD) patients, impacting nearly every aspect of their lives. It affects their mental and emotional well-being and their ability to work. And while most AD patients have discussed their fatigue with their physicians, many have not been prescribed treatment for their fatigue.
Profound. Debilitating. A major issue.

Yup. Sounds about right. It IS high time that more attention and research is directed toward this most difficult aspect of autoimmune disease.

Monday, March 23, 2015

Dumb Stupid Virus

Oh my gosh. The package says "extra strong" and that is_not_ an exaggeration.

All of your wishes for a speedy recovery are very much appreciated; and I'm glad to say that I AM slowly shaking off this dumb stupid virus. I'm behaving myself in my usual recovery-mode manner: grumpily and with enormous impatience.

I'm armed with my inhalers, cough drops, gallons of soup, and an old school style steam humidifier; I have an enormous stash of tea at the ready, my schnauzer at my side and my laptop on my, lap. So all I have to do to get over this thing is to behave myself.

Which, as we all know, rarely happens.

Whoever invented lotion tissues was a genius. 

Isn't it so weird how Sjogren's dryness complicates recovering from a respiratory infection? At one end of my airway, my nose runs like a faucet. Where DOES all this watery mucous come from anyway? Meanwhile, my mouth, throat, and lungs feel dry, dry dry; which seems to trigger an unrelenting harsh cough. And don't even get me started on the effects of antihistamines on the whole situation which although may slow the nose drips; magnifies dryness everywhere else. Not to mention also amplifying the symptoms of restless leg syndrome.

Wah. Wah wah wah. I'll spare y'all a lengthy litany of my other symptoms.

John drove me down to the local drugstore on Saturday. I needed to stock up on cough drops and figured it would be an exciting outing. As I came through the front doors, the young gal at the cash register watched me shuffle down the aisles (literally shuffling - I stuck a pair of too-big-for-me John's shoes on my feet because they were conveniently sitting by the door) while coughing and sniffling into my sleeve.

I was a thing of beauty. Not.

Bless her heart, by the time I found what I needed and was ready to pay, the cashier had coupons for cold and flu products at the ready. I advised her to decontaminate the general vicinity after I left the store. Seriously.

I have to keep reminding myself that although I feel deeply and profoundly sorry for myself as I hack and snort my way through the week, that whatever discomfort I may feel pales in comparison to the two month recovery from my laminectomy last fall. It helps to keep things in perspective.

Friday, March 20, 2015

Time Out

Hey, guys. You've seen those commercials for cold/flu products? Well, right now I look and feel like the pathetic "before" person.

Yeah. Not good. 

I'm taking a few days off until my head clears and I am able to put a coherent thought or two into writing. 

See y'all Monday. Or Tuesday, or.....whenever I crawl back out of bed. 

Behave yourselves until I get back. 

Julia: ONE Bacteria: ZERO

I'm not certain that Escherichia coli is the culprit this go-around, but it has been in the past. 

Well, guys. It's been a weird week, but things are looking up. I actually took a shower today.

Just when I thought I'd climbed up out of a deep post-travel fatigue hole, last Tuesday I found myself in my internal medicine doctor's office carrying on about my latest ailment.

I don't know exactly what's going on. I just know something's not right. I have a strange burning pain in my lower abdomen and I feel crummy.

Bless her heart; my internal medicine physician Dr. P., a petite woman about my age, has been so patient and resourceful with me over the past several months as she and Dr. Young Guy worked together to find some relief for my restless leg and peripheral neuropathy issues. And so she once again sat across from me and listened to my complaints with attentiveness and concern. After a physical exam which included a thorough palpation of my abdomen, she sent me for an abdominal x-ray, some lab work, and a urinalysis which meant just a quick walk down the hallway. After my tests were completed and I dutifully peed in a cup, I returned to my exam room. I was sitting there thinking that it was a real waste of lab time and money doing a U/A since I was certain that there couldn't be anything wrong there.

Dr. P. bustled into the room and took a seat on her rolling chair next to the computer. "Let's pull up your x-ray and take a look at it together. C'mon over."

I thought that was pretty cool that she wanted me to see my film first hand even though she was giving me far too much credit in my x-ray evaluation skills. I'd seen my share of chest x-rays way back when I was a dialysis nurse, but abdomens? Not so much.

"Look at this....and this.....and this," she said and pointed out various images. "I think your stool pattern looks very normal."

Yippee, I thought. I have an impressive stool pattern.

"I'm sure you know that means you probably don't have any kind of obstructive thing going on. I'll make sure this is reviewed by a radiologist but I'm pretty comfortable telling you that your x-ray is normal."


"Let's see if your U/A is back......"

I was about to say that I didn't have any bladder symptoms when she exclaimed, "Aha!"


"Take a look. Your leukocytes and nitrites are sky high. You, my friend, have a roaring urinary tract infection."

Whoa! But....but....I don't have any of the usual cystitis symptoms like burning or frequency or any of that stuff.

"Being immunosuppressed by your Cellcept and prednisone probably masked the usual symptoms. I wonder if the infection has actually moved past your bladder and is involving your ureters and possibly nearing your kidney which could account for your abdominal pain. I'm glad you came in when you did or things could have become far more serious."

Me too!

She typed a prescription for an antibiotic into the computer and gave me the usual instructions regarding increasing fluids and getting some rest, and asked me to contact her if I wasn't feeling better in a day or so. After thanking her, I left her office and headed toward the pharmacy feeling a strange mix of relief and uncertainty.

I was relieved because I had an answer to why I was feeling so crummy; but uncertain and frustrated because I thought I knew my body so well and yet I had completely misinterpreted the signals it was sending me. Great, I thought. Yet another example of how quickly weirdo stuff can happen when I'm taking these kinds of drugs.

It was a good reminder of my increase in susceptibility to infection when immunosuppressed.

So here I am chugging water and unsweetened cranberry juice (zowie - that stuff is tart) and marveling yet again how a bunch of teensy little microorganisms can wipe big old me out for a whole week. But I'm getting my revenge. Every time I swallow my Cipro, I think, Take THAT you lousy little critters. DEATH to you all! Bwahahahaha! 

It appears that I may have lost one battle, but I'm winning the war. Yesssssssss.

Thursday, March 19, 2015 Watching Cooking Shows could Make You Fat

Put down my remote? This one?! 

Well, dang.

When I have the need to spend time resting, I like to channel-surf on the TV. I like old movies, Mariners baseball games, news, and also the Food network. Yeah. I really enjoy watching those chefs whip up spectacular gastronomical delights. Which always whips up a corresponding appetite. So I wasn't surprised at all to see this:

Watching Cooking Shows Could Make You Fat

Put down the remote—new research links cooking shows, higher BMI

Read more here

You’ve heard it before—cooking at home saves you money and can save you from the gigantic portions, high calorie counts and expense of eating out. But don’t be so quick to flip to your favorite cooking show for inspiration. New research suggests that cooking shows (which are watched by up to 91 percent of food shoppers) could make you fat.

A team of researchers from Cornell University surveyed 501 females between 20 and 35 years of age, asking questions about cooking habits, weight and height, and how respondents found new recipes. They learned that when it comes to cooking shows, there are two kinds of people—“viewers,” who merely watch food on TV, and “doers” who try the recipes they see on cooking shows. The study found that “doers” had higher body mass index (BMI) than those who merely viewed—and that, on average, they weighed 11 pounds more than their non-cooking counterparts.