Power-up

Awesome Prius power button image found here, on Priuschat

Yesterday was a good day.

Correction: A GREAT day.

I went to Mass, went shopping, had lunch with Terese, and treated  Goldie to a brand spankin' new windshield.

Today, I'm paying the price, but ahhh.

What fun it was to get out of the house and zip around with a bit of energy. It was worth every minute spent resting up today with my trusty nap buddies Maggie and Lulu.

As long as I'm tucked in bed with my laptop on my knees and my goggies nestled as close to me as they possibly can manage, I'm going to try to answer a few questions mentioned in previous comments and emails.

- How do you manage your pain? Have you taken Voltaren?

First, I have not taken Voltaren, a prescription non steroidal anti inflammatory drug. However, I am fortunate that pain is not my biggest issue with autoimmune disease. I do have some pain from my psoriatic arthritis in my fingers, take occasional Tylenol for this, and I have a paraffin bath that is large enough to dip my hands into which seems to ease some of the pain. Plaquenil has been somewhat effective in  diminishing some of my general body aches and malaise that were really problematic early on in my diagnosis. I have had pain in the bursa of my hips, but Dr. Young Guy's latest steroid injection into the connective tissue around the joint has helped remarkably. He has said that he can continue to inject this area every 4 -- 6 months or so if it is needed, since he is not actually injecting the drug directly into the actual joint.

Perhaps others can jump in here with more pain relief measures?

- Can you recommend a good rheumatologist?

I really, really, wish that I could share my doctor's name and location with y'all. But he has asked me specifically not to do that, so I must honor his request, and I'm sure you understand.

That being said, I do know that Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center may be one of several good starting points if possible, for those in the United States. This from their website:

Johns Hopkins Jerome L. Greene Sjögren’s Syndrome Center brings together the expertise of:

• rheumatologists
• neurologists
• ophthalmologists
• dentists/oral surgeons
• gynecologists
• otolaryngologists

The clinical program is also coupled with clinical and basic science research in the departments of Rheumatology, Neurology, Gynecology, Otolaryngology, and Ophthalmology at the Johns Hopkins Medical Institutions.

Our Goals and Philosophy

The Jerome L. Greene Sjogren’s Syndrome Center is multidisciplinary, drawing broad expertise from multiple specialties to provide the best care to patients with this disease. The accumulated wisdom of seeing literally hundreds of patients with Sjogren’s syndrome is wonderful for individual patients, as well as for scholarship and the development of knowledge in the entire field.

The  overall goal of the Center  is to provide outstanding clinical care to patients whilst facilitating research and scholarship in this disease. The Center is structured to serve these two complementary goals: 1) the diagnosis and management of Sjögren’s syndrome in a comprehensive multidisciplinary setting, and 2) the systematic collection of data and biological samples through longitudinal care of patients attending the Sjögren’s Center, using an approved and pre-established research protocol.

I have not been seen at this Center, but am intrigued at it's concept of integrating all types of health care providers for it's Sjs patients.

- Where do you live and do you lead a support group?

I live near Portland, Oregon. I do not lead a support group, although I have considered it on occasion. As far as I know, there is not a support group in my area. But here's the problem, and I'm sure that y'all can understand: As much as I would love to have the energy to organize and conduct a successful support group, the disease saps much of that needed energy. And isn't that just a vicious cycle? We need to get together, to support each other, to learn from each other.......but there are days when we can scarcely get ourselves dressed, much less prepare for and organize and get dressed and drive to and interact with a support group.

Dang.

If there are sjoggies in this area who would be interested in adopting this project, I would be happy to assist and have contact information for support groups sponsored by the  Sjogren's Syndrome Foundation, who provides educational materials for it's support group leaders.

Just a hint hint hint.

- Don't you think Pinky needs some bunny slippers out there in the cold?

Yes. He probably does. Although this would be difficult since he really has no feet - just a metal circle attached to his poor little legs. But perhaps this can be conquered. I'll put John on that right away....

Can We Talk?

Well. Hello there.

Yes. It's me. Nice to see you again.  

I'm Pinky. You may recall that I was the star of this year's Christmas light spectacular. Yes, I do look a bit different without my santa hat perched rakishly on my head. But my fans are able to spot me from a mile away, no matter what attire I'm sporting.

Sigh. Fame does have it's price. It's exhausting. The autographs, the pictures....and speaking of pictures.

I'd like a quick word with y'all before Julia comes back. She's running around with that camera of hers again. She said something about taking pictures of the reflections in her windows, of all things. How weird is that? I wonder about her choice of subjects for her photographs.

What kind of a dopey picture is that? 

Taking pictures of a reflection? Why not just take a picture of the thing that is actually causing the reflection? Like this, for example?

This is much better, if you're into boring scenery like mountains and trees and stuff. 

OR --

Why not take a picture of a handsome, dignified, and attractive light-up flamingo that just happens to be conveniently living on the front porch? And wearing festive stuff like bunny ears? And displaying a stunning profile, I might add?

Little old me? Why, yes. I suppose I do meet all those criteria, come to mention it.

I don't think she appreciates me enough. I worry about her artistic judgment. Actually, I worry about a LOT of things with that woman. Like..

Oh, wait, here she comes. Ssshhhh.....No, no, Julia. I wasn't complaining. Not me. I love living on the front porch. Yes, I much prefer the porch to being stuffed in the basement with all those tacky Christmas lights. You're marvelous, dahlink. I mean it. Who loves you, babe? Pinky does, that's who! No, I love you MORE, girlfriend! Yes, yes I do!

Whew. Close one.

Um. Anyone out there with exquisite taste all forms of flamingo art that would truly appreciate someone like.....say.....moi?

Bring a pair of zip-tie scissors when you come.

Green (1/2) Acre

I'm creeping back into the land of the living. By inches.

Yesterday, I reached that stage in recovery in which I began to be impatient and bored......a good sign yet a frustrating experience. I aimlessly wandered around the house, re-arranging stuff, flipping through old magazines, and tried folding some laundry, only to feel my face become cold and covered with perspiration. Aargh. I flopped back on the couch for a few minutes until I felt better, then began my wandering again.

I felt so restless. I moved to the recliner and lay back, fiddling with my iPhone and solitaire. I wanted to DO something. But my body just wasn't cooperating.

As I crankily tossed my phone aside and closed my eyes, I idly wondered what I could do, or where I would be, if I could do or be anywhere.

The answer was easy: the ocean. I wanted to be near the ocean.

I need to get out to the coast, and soon. I need to find an empty stretch of beach, bundle up against the cold wind, and just. be. there. To listen to the crash of the waves and the cries of the seagulls, to smell the salty, moist air, to close my eyes and just. be. For hours, with absolutely nothing else to do but just. be.

Without exception, when John and I spend time next to the ocean, I feel an inexplicable sense of renewal. I can't think of a logical explanation for it, but the fact remains: I feel better when I'm there. I feel stronger, and healthier, and just.......good. I breathe better. My skin feels moist. I use fewer eye drops.

Ahhh....But.

I knew that even though the coast is only an hour and a half away, a quick trip out just wasn't going to happen, so I had to think what other experience might suffice. I opened my eyes and glanced out the window, and saw my answer; I have a little plot of nature right in my own back yard. I grabbed a surprised John and asked if he would join me outdoors. We slipped on raincoats and headed down to our little potting shed at the far edge of the lawn. There, we found two lawn chairs, and sheltered from the rain and the wind, perched just inside the little building looking at our own little chunk of trees, and grass, and wind, and moisture.

It felt wonderful to let the wind and rain spatter my glasses. And John pointed out that we even had wildlife in our little nature preserve:

Ah, yes. The Schnauzer in the wild. A rare sight.

We returned to the house soggy, but happy. Guess sometimes I need to find renewal just outside my back door.

All photos mine.

YouTube: Stuff Healthy People Say to Sick People

Amanda, from WEGO Health, tweeted a link to this video yesterday:

This excellent YouTube video was made by LymeeLizi, a young woman infected with Lyme disease.

Well done, Lizi. Right on the money. 

Diary of a Wimpy Julia

Image used with permission by sangrea.net

Ahh. Feeling much better today. Thanks for all your concerns, everyone. I can appreciate the fact that my experience with these dumb stupid infections is no different than yours, so your tolerance to my whining is very kind of y'all.

So as my symptoms ease from my UTI, it's been interesting to note that my energy levels have been slowly rising, too. It never ceases to amaze me how fragile my energy stores are -- of course my body needs energy to fight an infection, and when the infection becomes less of a problem my body can do other things -- but when I had normal energy levels, I didn't notice the fluctuation as much.

Other things noticeably tap my energy supplies as well. Sometimes having an animated phone discussion will leave me sweating with the effort. Or even after I eat a large heavy meal, it feels as though my body has to shut down for awhile simply to digest.

Of course everyone's body requires the same energy for those tasks, but now that my energy stores are so small, I become so symptomatic as those stores are depleted even a little.

Before AI, I had the occasional UTI. And aside from the discomfort, I was still able to go about my day and do all those things that I needed to do: work, exercise, take care of the kids, clean the house, do yard work, yadayadayada...

But now, even something as simple as a bladder infection leaves me so wiped out that I needed to take an entire day to sleep to recharge.

It's so frustrating being a wimp. I don't like it at all.

How I Learned That Taking Immunosuppressants Makes One Prone To Infections...

Whew.

I really, really, feel crummy. So crummy that I'm wearing around my Gitche Gumee hoodie sweatshirt and pink jammies with schnauzer footprints all over them and my black Smartwool socks for the day and I DON'T CARE WHO SEES ME.

And aside from drinking water, water, and more water and making frequent trips to the bathroom, I've determined to plant my sorry butt in bed until I feel all better. Which had just better be soon.

It all started about three or four days ago, when I began noticing those early signs that I may be developing a urinary tract infection. Unfortunately, I'm pretty familiar with what those symptoms are: urgency (yikes-gotta-get-to-the-bathroom-NOW), frequency (WHAT? Again? I just went!), and dysuria (whoooooeeeeeee....that smarts......), among others.

But my symptoms were pretty mild so I just started drinking more water and unsweetened cranberry juice. After another day or two, I had to grudgingly admit that these early and fairly mild symptoms were moving more towards the whoooooeeeeeeeee stage, so I popped a few Azo pills, also known as Pyridium or Urogesic. This medication is sold over the counter and is actually a dye that when ingested, is excreted in the urine and acts to soothe and decrease pain in the bladder. It also turns urine bright orange. BRIGHT orange. Once when the kids were little, I forgot to flush the toilet while I was on this stuff, and I freaked out little DN1. I lied and told her it was just a new toilet cleaner....

I also made a trip to my local drugstore and bought an Azo UTI test strip kit. (See what lengths I will go to lately to avoid yet another trip to see my doctor? I mean, they're great and all....but I feel sometimes that I just don't. want. to. go. there.)

I figured if the test strips showed that I had an infection, I'd give my doctor a call. But the strip remained unchanged after I obediently peed on it and then waited for the prescribed amount of time.

Well. I must just be imagining things, I thought. But gee, the symptoms didn't go away. And I started developing chills. And finally yesterday, even the Azo wasn't helping my symptoms.

So. Here again. Julia's body is screaming Hey! Stupid! Something is wrong! Get on the phone with the doctor, you dodo-head! and Julia is all la-de-da-de-da.....::fingers in ears:: not listening...not listening at all.....

I crawled into bed after dosing myself with yet another round of Azo and Tylenol, and slept the afternoon away, convinced that when I woke up everything would be dandy.

And, of course, I woke up in pain and sweaty and shivery.

What a dope.

By now it was 5:30PM and of course my doctor's office hours were over but lucky for stupid me, the clinic has a 24 hour advice nurse. She was very helpful and didn't scold me at all for letting things get out of hand. So after all the preliminary information was taken care of and I had described my symptoms and she had my medical chart up on her computer screen, the conversation went something like this:

Me:.....so, yeah. I am sure it's a bladder infection but the stupid test strip said I didn't have one.

Nurse: Ok. I see that you're on prednisone AND immunosuppressive drugs, right? Let's see....ah...Gengraf. Oh, yes, that definitely puts you at a higher risk for infections.

Me: Um. Yes.

Nurse: Gee. That makes you very susceptible to these kinds of things, doesn't it?

Me: Um. Yes.

Nurse: So you've had these symptoms for three to four days now?

Me: Um. Yes.

Nurse: Have you had a UTI before? Oh, I see that you have....so you're familiar with the symptoms.....

Me: Um. Yes.....I should have called sooner, I guess...

Miss Tactful Advice Nurse Who Has Heard It All just diplomatically commented that she was glad that I had called in. Finally. And sent a message to an on-call physician with  the promise that I would be receiving a phone call from said doctor within the hour. And I did.

Miss Young On Call Physician was extremely helpful. I was instructed to head into Urgent Care and pee into a cup for a urine culture, and then over to the pharmacy to pick up a prescription for antibiotics.

Me:  But what if my culture is negative like that test strip was?

MYOCP: Good question. The thing is, I'm pretty sure you've got something going there, even if the culture doesn't show anything yet. People on these drugs can harbor infections and I don't want to take a chance that this develops into a kidney infection or worse.

Me: OK. (The urgent care department was a half hour drive away from my house, but by this time I was in so much discomfort, I would have volunteered to take a flight to the moon if that would bring me relief.)

Fast forward:

Pharmacist: So here's your antibiotic. Just a warning -- this could cause some diarrhea.

Me: OK. (I didn't care. I just wanted to pee without pain.)

While driving home I thought about what the pharmacist had told me, and had the brilliant idea that maybe I should run by another pharmacy and pick up some probiotics to head off any GI problems to add to my UT problems. A quick assessment of the dull pain in my lower abdomen led me to  the decision to just get home and get those antibiotics chasing through my bladder, regardless of their potential side effects.

MYOCP called just moments after I had arrived home to confirm that, yes, I did indeed have one whopper of a bladder infection.

(Dumb stupid over the counter UTI test strips.)

I thanked her profusely, and as I hung up the phone, realized sheepishly how fortunate I was to have such good care available to me in spite of my stupid tendencies to ignore everything my body tells me.

After I was tucked into bed that night, the thought occurred to me that since I was immunosuppressed, gee......I was prone to INFECTIONS. (Duh.) (Yes. It took that long for me to finally get that burned into my brain.) And that putting a whole bunch more BACTERIA via a probiotic capsule into my already immune-depressed self was probably just asking for more trouble.

I couldn't sleep, partly because I was still in the whooooeeeeeeee ouch phase, but also because I wondered if probiotics could really cause problems for me. I hadn't thought of that before. I rolled out of bed and headed for the computer. Turns out, I was right. A Google search turned up a zillion articles, most from reputable medical sources, that cautioned against using probiotics in immunosuppressed patients.

Gee. That would be me, I guess. (See? I can be taught. Eventually. After painful stimulus in response to unwise behaviors.)

The sites that promote the sales of probiotics, however, had a different story to tell and product to sell, and many made the claim that their product was safe for everyone. I was skeptical...so turned off my computer and headed back to bed, feeling lucky that I hadn't made that last minute stop at the pharmacy.

So. Here I am, telling y'all my tale of woe.

I hope y'all are learn much more quickly than I do. Whooooooeeeeeeeeee........

All The World Is A.....

.......Lulu chew toy.

Why, yes. You are correct, Julia. And your point is?

At least, that's what Lulu thinks. And for good reason; her toys are scattered from one end of this house to the other.

Trust me. They don't end here....they're everywhere. 

Maggie has grown far too sophisticated for such puppy-ish things. Except for treats. She's never too grown-up for treats.

Fetch a BALL? Surely you jest. 

PLEASE PLEASE PLEASE PLEASE...

However, Lulu lives for toys, and thinks that everything in our house is her toy. This is all my fault, and I know it. When Lulu was scampering out of my closet with her mouth full of my pink fluffy slipper, I should have snagged her right then and there. But she was so cuuuute....she was so little and the slipper so big....and she woo woo-ed me with her mouth full. And the pathetic thing is that it was equally cute when she came back for the OTHER SLIPPER. Dang. She gets away with murder when she does cute doggy stuff and she knows it.

Which is why I know that it's not Lulu's fault that she felt completely comfortable stealing these bunny ears headband out of the "Easter Decoration" box.

I don't know what is worse -- the fact that she does it, or the fact that I tolerate her kleptomaniac tendencies. Let's have another look at Lulu's toy stash, shall we?

See the Happy Feet penguin? And the Christmas duck with the Pepsi logo? Both items were Christmas gifts for my girls this year. However. It took Lulu about two minutes to stuff her nose into their gift bags and make off with the plushies, slobbering them just enough to make the girls wrinkle their noses and tell Lulu she could have them.

Which, of course, was her plan all along.

It worries me that in spite of the fact that our house is stuffed with doggie toys, I keep buying her more. Who's problem is this, really?

Oh, please. I fail to see any problem with this situation. 

And treats. The poor little dears need a constant supply of treats. 

I had a professor in college that was very frank in discussing her bipolar disorder with her students. I admired her greatly for this, especially since she taught psychology. I remember her lectures probably better than any others that semester.

She once described those behaviors that told her she was entering the manic part of her disorder:

"I know that when the back of my car is so full of Petco bags stuffed with treats and toys for the dogs and nobody can find room in the back seat, that I had better re-evaluate my medications!"

Hmm.

Bunny Plates and Julia Weirdness

This is what my life has become.

I'm in angst over whether my Easter bunny plates should line up over my stove like this:

Or this:

Here's the dilemma. If I arrange the plates so that only the center bunnies look at each other, I like that color arrangement best. BUT, the downside to this arrangement is that only two of the bunnies are looking at each other.

Only two? But....but....what about those other poor bunnies who only have the knife block or the toaster to look at? I would think the end bunnies would be lonesome if they didn't have another bunny to look at. I wonder if I should go out and buy some bunny stuffies to perch on either end of the plate bunnies so that the outward looking bunnies wouldn't have to look at torture implements like knives or a toaster.

Nah. Too much work. I think I'll just arrange the plate bunnies so that they look at each other in pairs.

Then again.....what if all the bunnies get tired of looking at each other? What if they don't get along with the bunny that they are doomed to gaze at for the entire Easter season, hm?

Maybe I should pair the bunnies one way for a few weeks, then switch them around for another few weeks so I don't find myself in the midst of a bunny argument leaving shards of porcelain all over the top of my stove.

I know.

I really, really need to get out more.

It's a Carnival

Waushara County Fair Tilt-A-Whirl found here. 

My friend Jennifer, author of the Understanding Invisible Illnesses blog, is starting her own blog carnival.

Not sure if you should plan to attend and buy cotton candy? And become barfy on the tilt-a-whirl ride?

It's not that kind of carnival, sorry. Actually, the end product of a blog carnival is this amazing compilation of blog posts from all around the internets. The person organizing the carnival, in this case Jennifer, puts out a call for posts that answer a specific question, or comment on a particular issue. She then writes a post in which she features links to the submitted posts. It's a great way to read other blogs and new information.

For her debut carnival, Jennifer is asking for posts that deal with these questions:

This year, I'd like to start UII Blog Carnivals, right here! For our first topic, I draw on a special event in my own life. My dad just had surgery for spinal stenosis, and by the time he awoke from this outpatient procedure, he already had significant relief in his legs & feet from the debilitating pain & cramps his compressed nerves caused. 

For the inaugural UII Blog Carnival, lets share posts about successful treatments/procedures that have helped make your life better! It's so easy to get mired in how incomplete our relief can feel, but success stories (great & small) do happen! 

Here's all the info & how to enter:
Send the following information to uii(dot)Jennyp(at)gmail(dot) by FRIDAY, MARCH 9, 2012: 

*Your name (nickname/pseudonym is fine)
*Name of your blog
*URL of the post to share. The post can be a new, written especially for this carnival, or an older pre-existing entry as long as it's on this (general) topic!
*Twitter handle (if applicable) 

And that's it! If you have questions or ideas for future topics, please let me know! Also, encourage your friends & blogger buddies to contribute, too!

I know that several of Reasonably Well's readers are also bloggers, so here's an opportunity to write for a new and different group of readers.

If you aren't a blogger, email your coping tips and success stories to me and I will incorporate them into a post, send them on,  and give you the credit.

New MCATs

Image found here. 

Thanks to a tweet by Kelly, author of Rheumatoid Arthritis Warrior, I learned this, found here:

"In an effort to create a cadre of future physicians with improved bedside manners, the Assn. of American Medical Colleges has announced changes to the Medical College Admission Test (MCATs) that would plumb applicants' knowledge of psychology, sociology and biology, as well as their ethical and scientific reasoning skills.
     "Being a good doctor isn't just about understanding science: it's about understanding people," said Dr. Darrell G. Kirch, president and chief executive of the Assn. of American Medical Colleges in a news conference Thursday."

I agree wholeheartedly. Even though I do consider myself very fortunate to have several doctors who are intuitive, caring individuals, we all have met those doctors that look at patients only by the name of their disease instead of the name of their person.

As important as it is to cultivate and educate a good bedside manner in physicians, I would think that these skills would also be key in educating nurses--who spend more hours at a patient's bedside than any other healthcare professionals. Perhaps the American Nurses Association could push to develop an admissions test for collegiate nursing programs that look for some of the same knowledge and personality strengths.

Every patient deserves to be treated by professionals that understand people.

Julia: One. Crash-and-burn: Zip.

One possibility from Alfred Angelo.....but in a different color. 

I've posted so much recently about my spectacular energy crash and burn episodes. This time it's a real pleasure to write about an outing in which I actually managed my energy pretty well.

Daughter number one made a quick trip up to Seattle to see friends, so John and I jumped into Goldie and headed north for a day. We met at DN2's apartment; John and I, the three kids, and their fiances/boyfriend.

I looked around happily at the circle of wonderful people around us, and had the thought: Are we all here, now? Is this our new family? And wouldn't that be an amazing thing? I would have been content to just sit on the couch and watch everyone talk and laugh for the whole day, but we did have a few things to do.

So we girls headed out to do some bridesmaid dress shopping. It was so tempting to let myself just zip around the store grabbing dresses for the girls to try, but I found myself a comfy chair in front of a lovely three-way mirror, and demanded a fashion show. Right there in front of me.

The girls were only too happy to oblige and before long, I was treated to a parade of pretty girls wearing beautiful dresses. We had a flurry of saleswomen handing dresses in and out of the dressing rooms, and had gathered a small group of spectators before we were finished.

One woman in particular joined in with gusto. She stood next to me, chin in hand, making thoughtful but decisive comments about the dresses.

Good thing we all agreed upon the same dress. What fun.

Afterwards, the girls wondered if I had enough energy to repeat the parade in another store. As I sipped a low-fat smoothie, I reluctantly came to the conclusion that I just didn't have enough energy left for that.

I love how DN2 has totally adopted the "spoon theory".

"How many spoons, Mom?"

I'm running low, honey.....

"All righty, then. Let's head back to my place."

Which we did. And ordered in pizza and played video games. John and I hugged everyone goodbye after our pizza supper and pointed Goldie south. And as I woke up today, realized with a pleasant shock that I may have escaped -- or should I say managed -- to avoid a day after crash and burn.

Nice.

Maybe she CAN be taught to listen to her body's messages.

Autoimmune Disease Fact Sheet by Womenshealth.gov

Womenshealth.gov is a great resource for women's health information. An amazingly well written yet simple to understand fact sheet about autoimmune diseases can be found there among a plethora of other health information sources specifically for women. You can read it here.

You can read and print this document as a PDF file here.

The fact sheet addresses fourteen excellent questions and includes useful graphics such as this one:

Check it out.

Oh, My.

This great image from the Facebook group Healing With Art.

Coping by Cleaning

Oh, right. Under the piano bench. Isn't that where everyone keeps their wrist weights? 

Last night after dinner, John began to clear the table and load the dishes into the dishwasher, all the while mumbling and talking to himself.

Knowing my husband, it was clear that the combination of vigorous housework and self-talk was not a good thing.

What's going on, babe?

He sighed. "Oh, just more work stuff." Which was not surprising. He and his team have been laboring furiously to keep a project on deadline and it's been a challenge.

Just go put your feet up, honey. I'll do these dishes. Just relax!

"Thanks......but actually doing stuff like this makes me think better. Just sitting around makes me more frustrated with a problem."

Oh. I opened my mouth to say, Yes, I feel the same way... then realized that this was no longer true. I USED to deal with stress in the same way.

I USED to turn into a white tornado when I was stressed or working out a problem. I'd clean the house and do laundry, or mow the lawn, or weed my garden with a vengeance; until either I couldn't find another weed or dirty sock, or I had come to some kind of solution to my problem.

It didn't take the kids long to figure out that when I was in one of these moods, unless they scrambled out of sight, they would be handed a dust cloth or a broom or a basket of laundry to fold. I liked to problem solve with plenty of other hands working along with me. Especially indentured servants, er, helpful children pressed WILLINGLY and CHEERFULLY into service.

They had to hide pretty well, too, or I'd go find them. When they were old enough, they decided looooonnnnngggg bike rides around the neighborhood would be effective. I would be looking to snag them and I'd hear the click of their bike helmets. Ha!

But as I was watching John energetically scrubbing a frying pan last night, it finally hit me that I can't deal with stress that way anymore. I want to. I still feel an urge to DO something while I'm mulling over a problem. But I just can't anymore.

Wow. Seven years? It's taken me seven years to realize this?

Hmm. Since the arrival of autoimmune disease I just don't handle stress as well as I used to. Could it be that since one of my most valuable coping mechanisms has been taken away from me, that this might partially account for some of my ineffective reactions to anxiety and stress?

Nowadays, when placed in a stressful or anxiety producing situation, my response is much different. My mind still churns away looking for a solution, but it seems that the simple effort of thinking saps whatever energy I have. And just mulling over a conflict can literally make me break out in a sweat.

Pathetic.

But I wonder.......if I added a very simple or easy physical exercise -- maybe lifting a very small wrist weight, for example -- this very light activity might ease some of my mental distress and get the grey matter functioning a bit better. Exercise or activity certainly used to help me think more clearly.

I'm going to give this a try. If I can remember to try it. Or if I can remember where I put those dang wrist weights......

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.

Vaccines and Autoimmunity

Image found here. 

As I read this story entitled No Increase in Autoimmune Conditions From Use of HPV Vaccine, I was glad that a large study had disproved any link between the use of the human papilloma vaccine and autoimmune disease, but was a bit puzzled at what data may have spurred researchers to embark on this particular study.

Just goes to show that miss smartypants here isn't as smartypants as she thought she was.

Here's what the authors of this study concluded, as summarized by Medscape Medical News:

In a large population of young women aged 9 to 26 years who received quadrivalent human papillomavirus vaccine (HPV4), researchers found no increase in new-onset autoimmune conditions. This observational safety study showed no cluster of disease onset according to vaccination timing, dose sequence, or patient age for the 16 prespecified autoimmune conditions examined.......William Schaffner, MD, chair of the Department of Preventive Medicine at Vanderbilt University School of Medicine in Nashville, Tennessee, and president of the National Foundation for Infectious Diseases, commented to Medscape Medical News that he is impressed with the study, which he said is "very well designed and executed...nicely written up, [and] very comprehensive" in its survey of a wide variety of immune disorders.
     He said the results, which would be expected, are still comforting, and that such postmarketing studies are important. "There's no evidence that HPV precipitates or in any way enhances any autoimmune conditions, which is, of course, one of the kind of vaguely stated concerns of people who are vaccine skeptics," Dr. Schaffner said. "This is a relatively new vaccine, and it's reassuring...particularly so since this is given originally to young women[, and] now [is] also being given to young men. But young women have a higher rate of some of these autoimmune disorders than do young men."

It appears that the discussion of a potential link between vaccines and autoimmune disease has been brewing for several years. This by Dr. Hedi Orbach published in Feb 2010 and found on Johns Hopkins Continuing Medical Information site contains her concerns:

Infectious agents contribute to the environmental factors involved in the development of autoimmune diseases possibly through molecular mimicry mechanisms. Hence, it is feasible that vaccinations may also contribute to the mosaic of autoimmunity.

We don't know with absolute certainty what causes any autoimmune disease. What is theorized, however, is that a combination of genetics, environmental factors, and an infection may trigger the cascade of events that begin the autoimmune process. You can refresh your knowledge of autoimmune disease causes here.

After reading Dr. Orbach's quote, I can see why studies which examine the vaccine/autoimmune link are necessary. But even if it were proved, would the other precipitating factors need to be present as well?

Interesting stuff.

One More Thing...

::facepalm::

I forgot to add THE MOST IMPORTANT PHOTO of the entire bunch from yesterday.

Drumroll, please......

And. The number one reason that I am lucky to have Terese around IS:

She's willing to pose for a picture wearing a fish that is eating her head!

::applause sign lit and audience erupts into cheers::

Totem Poles, New Friends, and Good Friends

Terese and I recently took another wedding-stuff shopping trip with DN2. What a fun day.

Ahh. So far, planning these weddings has been such fun. I hope it continues this way, but knowing my kids and their future spouses, I'll betcha that the good times will just keep a comin'.

Once the wedding details were attended to and Daughter Number Two had to head back to work, Terese and I were left with an entire afternoon in Seattle.

Woot. J and T on the loose.

We checked out the progress on the carving of a totem pole.

We walked along the piers and waterfront.

Can you see the Olympic mountains across Puget Sound? 

And took in the Seattle Aquarium, where my new best octopi friends Rocky and Mae reside.

Well, helllooooo, Rocky.

Mae. You're FABULOUS, dahlink. 

I'm so fortunate that Terese is usually up for a quick trip north with very little notice. Aside from enjoying her company, I also appreciate the fact that she's willing to take more than her fair share of the driving, which saves oodles and oodles of energy for me. And she'll hoof it over to the other half of the aquarium and send me photo messages to let me know what I missed while taking a break. She understands when I tell her that I need to find a bottle of water or soda ASAP. She usually can decipher brainfog-ese when I look at her and say something completely incoherent.

I'm so lucky to have Terese.

Anyone would be lucky to have a Terese.

Goodbye, Godmother

Aunt Katherine's church. 

The day before yesterday, I received word that my Aunt Katherine, who also was my godmother and my dad's baby sister, had suffered a major stroke. In her mid-eighties, the fact that a major medical event happened to her should not have been a shock, but in fact it was. Aunt Kay was a fiercely independent and active woman.

I sat quietly and listened with some disbelief as my mother explained the circumstances: She had just finished playing the organ for daily Mass, went from church to the grocery store, and then got into her car to head home. When she put her car into gear, the stroke must have occurred, and her vehicle rolled slowly into another car in the parking lot.

A bystander called the ambulance, and Aunt Kay was whisked away to a nearby hospital, where imaging studies were done and she was placed on a respirator. The family quickly learned that fully half of her brain was impacted by this major stroke, and that the likelihood of her survival was miniscule.

"She's still hooked up to life support," said Mom. "They're waiting for all your cousins to be notified before they take her off the respirator. I'll let you know when that happens."

So that evening I participated in the usual Friday night events: dinner out with friends and a hilarious game of darts, (hence Emily and John and Greg's post yesterday) and I was glad to be surrounded by family and friends as I tried to mentally digest what was happening in an ICU across the country to this truly remarkable woman.

That night, I found it hard to sleep, so I got out my rosary and began to feel some peace as I slipped into meditation and prayer. I finally fell asleep around 2:30AM.

As her sons and daughters gathered around her hospital bed, one of my cousins made the observation, "This isn't fair..." and her siblings assumed she meant that her mother was taken away from them too soon.

"No." she said. "Mom has had Jesus walking beside her for all of her life. Now he wants to take her to heaven and they have to wait until we can get her disconnected from all this stupid stuff."

This said through tears of grief. But everyone smiled at the thought of Katherine and Jesus, hand in hand, ready to depart for heaven, Jesus impatiently tapping his foot on the shining hospital floor. Or drumming his fingers on the top of the bedside table.

I later found out that she was taken off the ventilator that afternoon, but did not take her last breath until yesterday at two AM. She and Jesus had to wait for almost twelve hours. I was glad that I had kept vigil in my own way about a thousand miles away.

I can't begin to do justice to the complex, intelligent, stubborn, frustrating, loving and lovable personality that she was, so I won't even try. Except to say that the things that I will always remember about her were her tremendous faith, her love for her family, her amazingly green thumb, her incredible intelligence, and her keen wit.

And although we all will miss her desperately, I'm glad that her walk with Jesus continues in heaven.