Snot Funny

Awesome nose image found here. 

So this little item is not even remotely Sjogren's related but was too good not to share.

I'm sure y'all know that I receive regular updates about ongoing and published health studies. I find research topics fascinating, irregardless of their relationship to autoimmunity.

Call me weird. It's true.

So I was reading the results of this study, published in JAMA conducted by Jane M. Garbutt, MBChB; Christina Banister, BA; Edward Spitznagel, PhD; and Jay F. Piccirillo, MD; and which looked at treatments for sinusitis.

MedPage Today Primary Care had this to say about the study:

Antibiotics won't chase away patients' sniffles any faster than watchful waiting, researchers found.
In a randomized trial, patients with acute rhinosinusitis had no differences in symptoms or quality of life three days after starting on amoxicillin compared with patients who received a placebo instead, Jay Piccirillo, MD, of Washington University in St. Louis, and colleagues reported in the Journal of the American Medical Association.
"It provides further evidence for what we've really suspected for a long time -- that in the management of patients with acute sinusitis, antibiotics do not convey any additional benefit," Piccirillo said in The JAMA Report.

Nothing earth shattering there. But read this:

Patients were given either a 10-day course of amoxicillin (1,500 mg/day) or placebo at three doses per day. Their symptoms and disease-specific quality of life -- as measured by the Sinonasal Outcome Test (SNOT-16) -- were assessed during their 10 days of treatment.

Are you kidding me? The SNOT-16 OUTCOME assessment? Of sinus and nasal drainage? (among other indicators, but still...)

I had to think, Wait. Is it April Fool's day? Nope. Did I read this correctly? Yup. SNOT? SNOT?

O-kaaaaaaay.

I cannot believe that some researcher actually came up with this acronym without snorting and giggling. "Har har....just wait 'till they read this... snicker snicker snicker."

Yuk it up, guys. Good one.

Now get back to work.

I Can.

Mom and Dad's obscenely indulged and chubby midwestern squirrels. 

I've had a few days to mull over my spectacular crash and burn episode during my trip back to the midwest last week.

Initially, my reaction went something like this:

Oh. My. Gosh. I will NEVER travel by myself again. I will never rent a car by myself again. I just can't do this.

But after further reflection, I've decided that that line of reasoning is nothing short of a bucket of nonsense.

No, what I am now thinking is this:

Oh. My. Gosh. How inept I was at deciphering my body's signals. How silly of me to think that I could just blindly push through my crash, and that it was OK to put myself and others in danger simply because I was too proud to admit that I needed help. 


I will NEVER travel without making better plans. I will travel alone again -- but I will honor those messages that my body sends me regardless of what I want to do. Instead of what I CAN do. 


People with far greater disabilities than mine travel and live independent lives, and there's no reason that I can't either. It's just a matter of planning and preparation. All of which take careful thought and plenty of time. 


I can do that. I will do that.

On This Valentine's Day.....

........there's no better advice than that given by Mother Teresa:

Go out into the world today and love the people you meet. Let your presence light the hearts of people ~ Mother Teresa

Image by Healing With Art 

Sjogren's Syndrome and MicroRNA

A recent study which looked at microRNAs, (small pieces of the genetic material RNA, which influences which and when genes are turned on or off) caught my attention when the results of the study included potential autoimmune diagnostic and treatment uses in the manipulation of these little bundles:

MicroRNAs (miRNAs) are endogenous, non-coding, single-stranded RNAs about 21 nucleotides in length. miRNAs have been shown to regulate gene expression and thus influence a wide range of physiological and pathological processes.


Abnormal expression of miRNAs has been reported in autoimmune diseases, mainly in systemic lupus erythematosus and rheumatoid arthritis. miRNAs can be aberrantly expressed even in the different stages of disease progression, allowing miRNAs to be important biomarkers, to help understand the pathogenesis of the disease, and to monitor disease activity and effects of treatment. Different groups have demonstrated a link between miRNA expression and disease activity, as in the case of renal flares in lupus patients. Moreover, miRNAs are emerging as potential targets for new therapeutic strategies of autoimmune disorders. Taken together, recent data demonstrate that miRNAs can influence mechanisms involved in the pathogenesis, relapse, and specific organ involvement of autoimmune diseases. The ultimate goal is the identification of a miRNA target or targets that could be manipulated through specific therapies, aiming at activation or inhibition of specific miRNAs responsible for the development of disease.


It is now apparent that miRNAs can potentially regulate every aspect of cellular activity, from dierentiation and proliferation to apoptosis, and they can also modulate a large range of physiological and pathological processes.

The study focused on several autoimmune diseases including Sjogren's syndrome:

Michael and colleagues explored the presence of miRNAs in saliva exosomes isolated from parotid and submandibular glands of patients with SS.They have shown that miRNAs can be identified in saliva, which suggests it may be possible to obtain information from these target organs without the need for invasive methods, such as biopsies.

The study authors conclude:

...investigations have shown that miRNA-based gene therapies targeting dysregulated miRNAs have the potential to become therapeutic tools.

Interesting. Gene-based therapy in the treatment of autoimmune disease. I'm keeping an eye on this one.

Food For Thought After A Crash

This found on Julian Lennon's facebook page:

Honk Shuuuuuuu

Sleep is wonderful. Think I'll go get me some more.

See y'all tomorrow.

It Could Have Ended Much Differently

Well. Here I am, sitting at the airport waiting for my flight home.

I am glad that I made this trip. But I have learned more about myself and my ever evolving disease on this go-around.

And I am not happy to report that what I learned isn't pleasant.

My flight over to my family's home went smoothly, so I was optimistic as I attended all of the services and family gatherings. I was sleeping well, and getting eight plus hours of sleep every night.

Then.

My sisters suggested that we go shopping and out to lunch yesterday. I enthusiastically agreed, confident that my energy levels would remain stable. I even offered to drive my mom so she could join us.

Why don't I listen to my body, hm? Why? It never lies to me. It sends me clear signals when a crash is impending. My face becomes ice cold. I begin to perspire. I say and do stupid things.

So as we entered the shopping mall and I attempted to purchase a bottle of water with shaking hands and an ice cold nose and looked blankly at the machine with NO CLUE how to operate it, there was no excuse for my surprise at my catastrophic crash later.

It began in the restaurant and I could feel myself sliding lower and lower in my seat. When I found myself unable to follow the conversation, I excused myself and wobbled off to the bathroom and was grateful that the handicapped stall was large enough that I could flop down on my back and prop my feet up on the wall.

Gross, I know. Eww. Lying on the floor of a public bathroom. I looked at the ceiling and dejectedly berated my judgment. I stayed there for what seemed like forever, trying to forget what pathogens could possibly be occupying the floor along with me, while mopping sweat and breathing deeply.

My sister poked her head into the room and called my name. "Jul? What on earth are you doing on there??"

I quickly sat up and told her that I would be right out, washed my hands and joined our group, feeling only marginally better.

As we left the restaurant and Mom and I got into the car, suddenly I began to cry.

Inbetween sobs, I thought to myself, Well, THIS is new. Stupid, cold, shakey, nauseous, yes. A crybaby? Oh brother.

My mom looked at me with alarm. By this point, my sisters had driven away so I couldn't ask them to drive Mom home. She hugged me as best she could, being a tiny little lady embracing her plus sized daughter while buckled up in my rental car.

Finally I composed myself enough to tell her that this what I do when I crash. She has never seen me crash before and was aghast. "Honey! What can I do for you??!!??"

I didn't know what to tell her, so I sat trying to compose myself.

Poor Mom.

I then thought about driving us home, and still foggy, decided that it would be better if I drove rather than ask Mom.

Oh brother.

But I was able to drop her off at their house safely and then headed over to my sister's home, where I was spending the night.

I saw the driveway appear with relief after the six mile drive through the cold winter afternoon past the enormous flat cornfields, passing only a few houses along the way.

I allowed my concentration to falter as I smugly congratulated myself for my safe arrival when I heard my tires making a loud crunching noise as the car plowed through a snowbank and I drove smack dab across my sister's lawn through pristine snow. Where her driveway had once been located TWENTY YEARS ago.

Luckily, the car rolled on and I was able to park in her driveway with an unscathed car.....but a very prominent set of tire tracks crossing her lawn. Directly in front of their large patio windows. In the room where my sister and her husband spent hours sitting and looking at the pastoral view. Which now sported a fresh deep set of "what the heck was she thinking?!?" car tracks.

I looked at the lawn and briefly thought of grabbing a snow shovel to smooth away the evidence. And instantly realized that had I tried this I would end up sleeping in a snowbank.

Sigh.

So what have we learned from this little adventure, Miss Smartypants?

First of all, as I have told myself repeatedly, I need to be honest in my energy assessments. Dang. When will I learn this?

Secondly, I will never, ever again take stupid chances when I get behind the wheel of a car. I am certain that my guardian angel was riding on my shoulder on this trip but that drive home could have had cost Mom and me our lives had I made an even more stupid mistake than thinking a driveway was still located where it was twenty years ago.

Shudder.

I collapsed into bed after a quick call to Mom and Dad reassuring them that I was fine and slept straight through until the next morning.

I need to make honest assessments of my energy. And get rid of my dumb stupid pride. So hard to do.

C. Difficele and Proton Pump Inhibitors

Many sjoggies, myself included, have issues with GERD, or gastric reflux disease. And so every morning about an hour before breakfast, I pop my Prilosec capsule. It does a great job of reducing my heartburn and esophageal reflux symptoms.

Today, however, the FDA released a warning alerting consumers of these type of products to an increased risk of contracting severe diarrhea caused by the C. difficele bacteria. The warning extends to both prescribed and over the counter versions of these drugs which include not only Prilosec and it's generic equivilant omeprazole, but also Nexium, Prevacid, and Protonix, their generic equivilants, and several other PPI type drugs.

If you are taking these drugs and develop significant watery diarrhea, an elevated temperature, and abdominal pain, talk to your doctor. C. difficele caused diarrhea can cause serious intestinal problems if untreated.

For more information, visit the FDA website at: www.fda.gov

There is Always More To Learn

Today was a picture perfect winter day complete with a brilliant clear blue sky and a few inches of snow underfoot.

As I drove my rental car into town for Aunt Kay's funeral, it seemed very odd to be thinking of her death on such a beautiful day. Even odder still was the fact that my route took me past her house, and I smiled sadly as I saw laundry fluttering on her clothesline in the bright sunshine, and was reminded of a conversation that I had with Aunt Kay's son from the night before.

"Mom had put a load of laundry out on the clothesline to dry on the morning that she had her stroke," he said.

"I went outside to gather them in but I just couldn't..." He took a few seconds to brush away tears before he continued "....because I could see her footprints still there in the snow."

I just hugged my cousin as he cried. There was nothing that I could say.

Although the experience was tinged with loss and sorrow, still I was glad that I was able to be there. I loved reminiscing about all those hours spent with her and her family, but I also felt fortunate that I was there to witness those events that honored and cherished her after her days here had come to an end. I felt priviliged to join with the rest of the family in praying for her in death, but also to pray for her family, grieving yes, but still very much alive.

After the funeral Mass, and a brief graveside service, we returned to the church for a luncheon. Slowly, over ham sandwiches, steaming mugs of coffee, and generous slices of home made cakes, I could see everyone begin to smile. To begin to share stories about my godmother, to re-acquaint ourselves with extended family members not seen frequently, and to begin the journey onward without this exceptional woman that had influenced us all.

I laughed with my cousins as I remembered Kay's reaction to the news that I had been accepted into my college's nursing degree program. She scoffed at this and told me to forget "all that medicine nonsense. Come to your senses and study to become a writer!" After which I snorted and wondered how on Earth she had come to THAT conclusion. (Well, duh. She had been my high school creative writing and English teacher for four years.) Didn't she know how much I wanted to be another Florence Nightengale??

Ah, Aunt Katherine. Those A's were the hardest ones I ever achieved in high school. She told me that since I was her neice that I had a much harder task in her class than her other students. And she was right.

I never told her that I had begun to do a small amount of writing, and now I wish I had. I think she would have enjoyed proof reading every post!

Oh, Aunt Katherine.....

By the time I took my first bite of my ham sandwich, I could tell that my energy was spent for the day, so I sat sipping my coffee and just quietly observed the rest of the afternoon's activities.

This was completely out of character for me since in my pre-sjogren's days I would have been hoofing it around to every table with the intent to talk to every single person.

But the simple fact was that I couldn't, and in retrospect, I think I learned more and experienced my family's response to Kay's absence in a much more authentic manner.

So much can be conveyed by someone's posture, or expression, or mannerisms. And I had chosen my seat wisely since it was in the center of everyone. People milled all around me, stopped to greet me, and then moved on to other people and conversations. And I unabashedly eavesdropped on them all.

It was an effortless way to feel truly connected with my family......by just observing and listening.

Hm. There's probably a lesson there for me in this experience, I think: That sometimes more truthful and meaningful information can be gathered by not saying a word.

I need to practice silent observation more before this comes naturally to me, I think.

Are you still teaching me lessons, my godmother?

The Kindness of Strangers

I was traveling back to the Midwest for my godmother's funeral yesterday.

Since my flight left at six-yikes-too-early-AM, I found myself standing at the airport gate bleary-eyed and though I hadn't even boarded the plane, was happily reflecting on the generosity and courtesy from two complete strangers.

Are early morning travelers nicer than most? Or did I look especially pathetic this morning? Hard to tell. Could be a bit of both.

At the security checkpoint, I approached the TSA scanner confident that I couldn't possibly set off any alarms. Well, metal detectors, anyway. Had there been doofus detectors, I would have been in serious trouble, I surmised.

But of course my confident assumption was WRONG, as all kinds of lights and beeps sprang to life as I passed through the detectors.

Honestly. My Medic-Alert bracelet was the culprit, so I was brusquely advised to remove it.

Dang. This clasp on this thing was designed to be difficult to open, and boy howdy - it was being particularly stubborn. I hastily tried to open it but only succeeded in chipping my nail polish.

I was holding up the line, and several folks craned their neck to get a look at me, the troublesome slowpoke. Aaarrrgghhh.

"Can I help?" A young man whose arms and neck were covered with tattoed skulls and flames and serpents asked. He sported a whole variety of piercings, but his voice was low and gentle, a startling contrast to his fierce appearance.

"Thanks. I really appreciate it!" I said and stuck out my wrist as the TSA agent looked on.

The young man deftly undid the clasp and handed me my bracelet, and as he leaned forward to drop it into my hand, I saw a Medic-Alert necklace clutched in HIS hand. We smiled at each other as though we were members of an exclusive club. Which we are, I guess.

He glided past me after we both had cleared security, slinging his dog-tag style pendant over his head with practiced ease, tucking it beneath his t shirt on which was printed several skeletons floating in a sea of black with snakes woven through their ribs.

What a nice boy.

So I sat on a bench and slipped on my shoes, reclaimed my purse and bag, and was about to leave when an elderly gentleman waved at me. "Hey!" he said. "Is that yours?"

I looked down into the grey plastic bucket that I had tossed onto a stack of other grey buckets, and saw the Medic-Alert bracelet coiled up in the corner.

"Oh, my! Thanks!" I exclaimed.

He pushed his feet into his worn cowboy boots, gave his large belt buckle one final tug and slid his Stetson further back on his forehead. "Gimme your hand." he said with a gravely voice.

I obedediently stuck out my wrist and was amazed how easily his large callused fingers picked up the bracelet and manipulated the clasp.

"The wife has one. Durn things can't be done by the one's wearin' em"

"Thank you. Thank you so much!" I stammered, still processing what just had happened.

He tipped his hat, YES HE DID. I did not know that gentlemen still did that. And then loped off, leaving me sitting there looking at my troublesome bracelet.

I mulled over the fact that these two people had stopped to help me - a frumpy middle - aged chubby clueless lady. I would have expected such attention had I been young and cute.

There are some seriously good and kind people out there, folks. For which I am enormously grateful.