Figuring out Food

Glass of delicious, cool, nutritious, Julia-bellyache-inducing milk found here. 

Thanks to Sjogren's Forum for tweeting a link to this article entitled, Which Foods Are Your Inflammatory Triggers? The Elimination Diet in Four Steps by Angie King-Nosseir, MS, RD and found on Autoimmune Mom's blog here.

With my recent foray into "What the heck am I eating that's making my innards so cranky?!" land, and finding out quickly that dairy is definitely one culprit, some kind of elimination diet may be in my future.

Have you been forced to eliminate various foods from your diet? Want to know more about your food intolerances? Here's one method to do an assessment:

If there’s one thing that a person with autoimmunity should do to start the healing process, it is to first figure out what foods are acting as inflammatory triggers.  For many, this can seem daunting.  We have deep-rooted emotional connections to the foods and beverages that we consume, whether we realize it or not.  Embark upon an elimination diet, and you will soon understand what I mean.  Still, it’s a worthwhile, and I dare say, mandatory process. 

Let’s say you successfully make it through a 21-day elimination diet (you can).  You’re feeling much better, and you’d like to find out which foods you can safely add back from your previous life.  This is where it can get tricky. 

How are you going to reintroduce foods so that you gain a clear understanding of which foods are triggers and which are safe?  Just as important, how long is this going to take? 

Here’s a smart tip: If you do it the right way, it doesn’t have to take months upon months.  The more data you gather throughout the entire process, the easier it will be to understand which foods are friends and which foods are not, in the least amount of time.

Continue reading here.

Must-Haves for Surgery

Hm. I hadn't thought about needing a shower chair. Image found here. 

Thanks for all the support, guys! It appears that many of us are having or have had surgeries similar to the laminectomy that I have scheduled for late October. I've received oodles of emails and messages that include preparation and recovery tips, as well as much appreciated encouragement.

Y'all are the best. Seriously.

Reader Allisande, who will also have surgery soon alerted me to this very extensive and informative post on the Spine-Health forum.  What do you think of this list? Would you make any additions?

Handy List for Surgery

Obviously, there are so many items here that if you purchased everything, you would need a separate room to put things in, however, I included many items so people can make their own choices. If you have any other suggestions, please let me know. Thanks in advance and hope this list makes life a little easier for you prior to surgery. Best of luck.

Food Items

• Soft foods including: Yogurt, frozen yogurt, ice cream, popsicles, jello cups, pre-made puddings & tapioca, protein bars, cereal, microwave oatmeal, bananas, chicken stock, microwave dinners, frozen pasta entrees, pre-made mashed potatoes, cookies, chocolate, lettuce, salad dressing, cheese, lunch meat, hot dogs, bread, bakery items.
- Check for other soft foods that are healthier than this list ☺- People had a difficult time digesting food. Reports include nausea, increased thirst and fatigue so quick meals were essential.
• Drinks – Plenty of bottled water bedside, Gatorade, Powerade, coke, ginger ale, other soft drinks, yogurt drinks, Ensure or Boost protein drinks, milk, chocolate milk, orange juice, other juices, tea, coffee with cream/sugar/sweetener, Black tea with honey/lemon that soothes the stomach.
• Frozen fruit for blending smoothies in a Magic Bullet or blender
• Protein Powder [will assist with bone fusion, particularly if you cannot chew much]
• Bag of ice – small cubes
• Ice chips to help dry or sore throat
• Flexible and long straws
• Paper plates and plastic cups
• Candy, sugarless gum
• Mints
• Vitamins
• Magic Bullet (or similar blender) for individual servings o It is great for individual blending/smoothies, etc. It is carried in most dept stores, kitchen stores, etc. It is great at blending up ice and much more convenient to have the individual serving size than the full size blender. Magic Bullet also has a website.

Shower/Bathroom Items
• Shower stool to Chair to sit in shower with soap/shampoo/shower gel on another chair for easy reach
• Non-slip mat for shower
• Hand shower
• Long-handled Back scrubber
• Nylon bath poof instead of wash cloth; easier to hold
• Exfoliating skin towel. [Body Shop has these and they are great for rubbing off the dead skin and helping you feel fresh, especially if stuck in bed]
• Toilet riser with or without side handles - $15-$25
• Bedpan if necessary
• Walker and/or cane per doctor

Personal Items
• Deodorant body wipes / wet wipes for freshening up (Drug Store has near the Depends. They are a large size.)
• Pre-moistened facial cleansing cloths
• Dry shampoo $5 from specialty beauty store
• Powder – Shower to Shower or other
• Face cream (I would suggest small sizes)
• Hand cream
• Body lotion for itchy skin
• Lip balm, Chapstick
• Mouthwash
• Throat lozenges / Chloraseptic Spray
• Kleenex
• Wound dressings per doctor
• Thermometer to check temp after surgery
• Stool softener / Suppositories for constipation (Some found they couldn’t keep the pills down and/or they got stomach cramps from the pills)
• Prune Juice taken with a dose of Milk of Magnesia for dire cases of constipation - it takes about 2 hours, then you are good to go (pun intended).

Handy Items
•Grabber/picker – preferably 36” long. Perhaps one in bedroom and one in living room. $10-$25
• Long handled shoe horn. $5
• Grabber-like thing to pull on socks with, or think about wearing flip flops or open-backed shoes.
• Pill Organizer or notepad to keep track of what you need to take when and to make notations of when you take your meds.
• Bed tray
• Bell, cell phone or walkie talkies to contact caregivers, chargers for these items
• Microwaveable hot packs –great for aching shoulders, etc.
• Satin sheets for easy sliding in and of bed. Or satin PJ's.
• "Turning sheet" strip of heavy fabric that you put under you so that you can have a signficant other pull to turn you over as needed, particularly good for those first few days.
• Cold packs in freezer prior to surgery
• Phone near the bed.
• IPod, headphones, charger - Update your playlists
• Books, magazines, audio books, crosswords, Sudoku, Booklight
• Extra batteries for remotes
• Remote controls for TV, DVD, etc.
• Plastic containers to hold and organize items you will use while confined to bed. Also to use after mouthwash or for small trash. o Put all the reading materials, crosswords, pencils, etc. in one. Put personal cleansing items in another.
• Small, lightweight pitcher for water next to bed
• Paper towels near bed
• Small wash basin near bed
• Small bucket for nausea next to bed
• Small garbage bags nearby
• Towel that lies flat on the bed beside you. Put items you may use on top then just pull the towel toward you to retrieve items you can’t reach.
• Extra pillows to help with comfortable positions
• Additional sheets, blankets, pillows near recliner, sofa, chair in living room
• Wheelchair, if necessary
• Recliner, if possible. Some find recliners work, others don't - they can be hard to get out of.
• Think about placing every day items at waist height even if it means storing on counters.
• Pedometer for post-op walking program

Clothing
• Slip on shoes - Croc shoes with the open back. They are ugly but they are easy to get on, provide great traction, comfortable to wear and were recommended by the hospital.
• Slippers - not too loose with good soles
• Soft socks – NAP socks from Brookstone are awesome & keep your feet warm at night. $20/3 pairs
• Bathrobe
• Pull on pants – make them a size larger so they don’t bother your incision(s); check elastic so it’s not too tight.
• Front buttoned shirts or zipper tops for trips to PT and doctor
• Jogging suits
• Sweat pants
• Yoga pants
• Front button pajamas – numerous sets
• Camisoles or tee shirts to wear under brace, preferably cotton so it breathes. Ladies -try the ones with the bra built in.

Comfort Items
• Lots of pillows, body, small, wedge, cervical, etc.
• 3" memory foam mattress topper pad $100 approx.
• Pressure mattress or pads
• Have plenty of sheets, pillowcases, blankets, washcloths and towels ready for use. o Have sheets, blankets, pillows near a favorite recliner or sofa
• If you are planning on much reading or computer (laptop) work post-op, consider a stand that adjusts in position and height like a hospital bed tray –Brookstone. $150; There are less expensive ones around $60-70. Make sure they fit under your favorite chair.
• Linen spray to freshen sheets and pillow cases. Use lavender scent to relax and help with sleep.

To Do Prior To Surgery
• Shave, wax, pedicure, manicure, etc. right before surgery. If you have fake nails, think about removing since they may fall off due to anesthesia
• Hair cut
• Dentist
• OB-GYN
• Update prescription glasses, both reading and regular if you wear contacts since you won’t be wearing contacts much in the hospital or after surgery
• Give all doctor names and numbers to caregiver(s) as well as next to your bed
• Put together phone numbers of all concerned family members and friends on one sheet
• Check with your doctor for handicap sticker
• All grooming/personal supplies waist high to avoid reaching/bending
• Organize essential items at home to be within reach, e.g. telephone, shoes, etc.
• Arrange for care - someone to be with you for most of the first week post-discharge
• Make sure you give your surgeon a list of your regular medications including the dosage amount.
• Give blood prior to surgery and/or family members
• Checks made out for bills, stamped envelopes ready or online payments done in advance
• Have some cash handy for family members to run errands.
• Pet care arranged
• Car keys and house keys given to appropriate caregivers

Boredom Relievers
• Laptop
• Magazines, books
• Audio books
• Crosswords
• Sudoku
• IPod (updated with playlists for recovery)
• Nintendo
• DVDs - Order prior to surgery if belong to Netflix or other service

Take to Hospital
(check with hospital in case you receive items during stay)
• Button up pajamas
• Back Scratcher, cheap bamboo - invaluable!
• Bathrobe
• Hairbrush/Comb
• Toothbrush and toothpaste
• Mouthwash
• Facial wipes
• Body wipes
• Hand Cream
• Facial Cream
• Lip Balm
• Lavender linen spray or Febreze
• For long hair, elastic bands to tie back
• Loose clothing to come home in - Underwear - Front button top - Socks - Comfortable, safe shoes
• Magazine, crosswords, notepad, pencil
• Glasses
• Laptop, if you want - a lot of hospitals have wireless access in the rooms

On the day you come home:

Make sure you put a plastic trash bag on the car seat for easy sliding in and out of the vehicle. Pillows and a careful, slow driver are also great suggestions!

This list was originally compiled by Jujybean. Kinpain sent it to me when I was asking prior to my surgery. Since then I have read suggestions and edited the list accordingly - this list is truly a product of everyone here - THANKS!

THIS is Golden

Carol, a member of the Facebook group for Sjogren's Syndrome Foundation, posted this video clip from the TV series The Golden Girls. Carol commented, "Isn't this wonderful! Don't you wish you could do this to some of your doctors?"

Oh, yeah.

Saturday Smile

“There is freedom waiting for you,

On the breezes of the sky,

And you ask "What if I fall?"

Oh but my darling,

What if you fly?” 

― Erin Hanson

It's Working

Dang. Where have these slippers been for my whole life?

Guys. I think I may have found a stress-reducing therapy of equal efficacy to a Butterfinger Blizzard.

What am I stressing about, you ask? I must confess that I'm thinking about my surgery a month from now. I'm not really anxious, and I'm not afraid, but....I just need a little help to mentally digest health related things.

The exceptional calming qualities of sugar and butterfat really should be investigated, distilled, bottled and prescribed. Anyway, that's the effect they have on me. But since I'm no longer capable of eating dairy without living in a bathroom for 24 hours, I've had to seek therapy elsewhere. I believe that I've discovered a treatment that _almost_ equals the tranquilizing powers of a Blizzard.

Shopping. It's shopping, people.

Not just aimless shopping, but shopping directly related to whatever is causing my stress.

I'm not worried about the capabilities of my surgeon, or physicians, or anesthesiologist. I'm not afraid about post surgical pain. Because to a large extent, once I've made the choice of surgeon and hospital, everything that follows is pretty much out of my hands.

No. What I'm thinking about in respect to my upcoming procedure are things over which I have some modicum of control. Really important issues, such as the aforementioned What will I do if I drop my undies on the floor? and How am I going to put on my shoes if I can't bend over?

Now that I have a plan and a tool for the potential underwear incidents, and my grabber tool should arrive tomorrow.....on to the shoe conundrum.

Therapeutic online shopping to the rescue. I'd much prefer to conduct this therapy in real life while motoring myself around the nearest mall, but then if I were capable of hoofing around the stores, I wouldn't be looking at an upcoming laminectomy after all.

So online it is.

All of my shoes these days are lace-up or mary jane styles, both of which require not only feet but hands. So I've been looking at shoes that don't require me getting my fingers down to my feet, and the first of the two pair that I've chosen arrived today.

What do you think? I love these things.

They're leather, and have a plastic-y bottom so if I need to step outside for something, I can. I've never heard of this company before but think they did a great job on these beauties.

Brilliant.

My friend Kathleen made a great suggestion in case I find myself having to use my other shoes: acquiring a long-handled shoe horn.

Excellent. You'll excuse me as I head over to the Amazon site...

Panty Picker-upper

This is the one that I chose. Inexpensive, yet highly rated. I'll keep y'all posted. 

I had the greatest thing happen to me yesterday.

I had decided to give my new swimming suit a test drive and was bobbing around the community center pool. I must have rubbed the sore spot on my back a time or two, because this really pleasant woman approximately my age sloshed her way over to me and asked, "Back problems?"

I nodded. "Spinal stenosis. Having surgery in about a month."

"Oh my gosh! Me too! I had my surgery about two months ago and it was the best decision I ever made!" she enthused.

"Really? Wasn't it painful and a long recovery?"

"Oh, not so much. I was just thrilled that my stenosis symptoms were lots better, so much so that the incision pain was not bad. And now, all I have left is some numbness in my foot because I waited two whole years to have the surgery and had some nerve damage. I'm hoping it will come back."

"I am so glad that you told me that, thank you!"

We chatted for awhile discussing her experience, and after a bit, I thought to ask her, "So, if you had to do it all again, what would you do differently?"

She started to laugh. "I would have bought myself one of those grabber things right before the surgery instead of a few weeks later. Pretty handy gadget because you seriously can't bend over for awhile. And what do you do when you're standing there getting dressed and you drop your underwear on the floor if you can't bend over, hm?"

We laughed.

Wasn't that a thoughtful thing for her to do? I appreciate her thoughtfulness in sharing a really positive surgery story.

My grabber is being shipped even as we speak. I will think of her every time I use it.

I hope I see her again and can share my excellent surgery outcome. People can be so great sometimes.

.::happy sigh::.

I Love Lucy

 Fabulous Lucy image found here. I may have just identified yet another of my alter egos.

Well, guys. I'm in a rather crabby mood, so today's post will be short.Why, you ask? Here's everything in a nutshell:

• Epidural wore off
• Butt and back pain returned
• Numb foot too
• Saw neurosurgeon
• Having surgery
• October 29th

I guess I should also confess that I'm actually looking forward to the laminectomy in a weird sort of way, since all of my doctors, Dr. Young Guy included, think that this surgery has a high success rate for patients with my symptoms. And I would really, really, like for these symptoms to go away.

However.

This doesn't diminish the crabby factor much since it also involves going through some rather significant surgery and recovery time. Not to mention the owie factor involved in all of this.

Complicating things even more, my usual coping mechanism for dealing with unpleasantness has been forcibly removed from my skill set: Butterfinger blizzards and all things dairy make me nauseous and have erm.....rather busy intestines. And mango margaritas make me feel dizzy and cold and clammy, as does all alcohol lately.

Wah.

Wake me up in a couple months when it's all over. I'm going to bed.

The News isn't Good

Image found on Wikipedia

Well, guys. I was all set to put up a whiney butt post today about all my aches and pains and a litany of all the things about which I've been fretting lately.

Then I watched the news.

I watched YouTube video of airstrikes in Syria on one of those big news channels, while devastating predictions of potential fatalities from new Ebola outbreaks scrolled across the bottom of the screen.

You win, world. My worries are nothing.

See y'all tomorrow.

Bingo!

Thank you to whoever put this up on Twitter. I think it speaks for itself...

PinsandProcrastination found here. 

Saturdays Were Made For This

Yesterday, John and I finished up a few projects around the house, then jumped into Goldie. We headed upriver and had dinner while watching the sun set over the Columbia.

 See that haze over Mount Hood? It's not clouds -- it's smoke from a nearby wildfire. What a shame.

Pretty Close to the Truth

Here's your Saturday smile, courtesy of that excellent site Cute Overload:

Among nature’s miracles we find the leukocytes, or white blood cells. These form the backbone of the immune system, fighting off invaders such as diseases and Visigoths. In this simulation, a cluster of styrophilli cells rally to subdue felinus lazii, which is a strain of parasite.

Artificial Sweeteners and Glucose Intolerance

Do you consume artificial sweeteners? I have to confess that I do. It's one of those guilty pleasures that I indulge in: I have the vague sense that these chemicals cannot possibly be good for me, yet dang. I really love Diet Pepsi. I've tried repeatedly to quit drinking the stuff but somehow I end up with a bubbly glassful in my hand far too often.

After reading this article, thanks to a Sjogren's Forum tweet, I've decided that I'm going cold turkey and give all Nutrasweet, Splenda, and all their other artificial sweetener pals the boot from our house. Read this from the New York Times Well column, entitled Artificial Sweeteners May Disrupt Body’s Blood Sugar Controls written by Kenneth Chang:

Artificial sweeteners may disrupt the body’s ability to regulate blood sugar, causing metabolic changes that can be a precursor to diabetes, researchers are reporting.

That is “the very same condition that we often aim to prevent” by consuming sweeteners instead of sugar, said Dr. Eran Elinav, an immunologist at the Weizmann Institute of Science in Israel, at a news conference to discuss the findings.

The scientists performed a multitude of experiments, mostly on mice, to back up their assertion that the sweeteners alter the microbiome, the population of bacteria that is in the digestive system. 

The different mix of microbes, the researchers contend, changes the metabolism of glucose, causing levels to rise higher after eating and to decline more slowly than they otherwise would. 

The findings by Dr. Elinav and his collaborators in Israel, including Eran Segal, a professor of computer science and applied mathematics at Weizmann, are being published Wednesday by the journal Nature.

So buh bye, Crystal Light. I do a great job keeping me pudgy all by myself. I don't need your help, thank you very much.

Consider This

Attention San Francisco and surrounding area readers. Here's an opportunity to participate in a Sjogren's Syndrome study:

Stanford & UCSF researchers need adult volunteers over the age of 18 who have been diagnosed with Sjögren’s Syndrome!

The purpose of the research: We are studying how having low amounts of saliva impacts oral microbial communities, predisposing individuals with Sjögren’s Syndrome to oral disease, such as an increase in dental cavities and other oral infections. Ultimately, we are interested in developing novel, ecologically-based therapeutics that target the altered microbial communities present in individuals with reduced salivary flow due to Sjögren’s Syndrome, medication usage, and radiation therapy.

What will we do with the samples we collect? We will extract genomic DNA from each of the samples we collect. We will perform DNA sequencing to identify the composition and relative abundance of the bacteria present in each of the samples. In addition to sequencing the DNA of bacteria, we will use mass spectrometry to identify small molecules that are produced by the bacteria present in a select subset of samples. We will perform statistical tests to evaluate the spatial and temporal variation of bacterial communities within individuals and among individuals sampled in this experiment.

What would be my time commitment? Participants are asked to attend a dental screening examination that will last approximately 2.5 hours and a sample collection appointment that will last approximately 2.5 hours. The maximum time commitment is expected to be 5 hours.

Exclusion criteria: Individuals should not have taken oral, systemic antibiotics or antifungals during the six months prior to enrollment. Individuals should not have diabetes mellitus, HIV, acid reflux, or asthma. Individuals should not have other medical conditions such as hypothyroidism or hypertension that are not well controlled (i.e., treatment is intermittent or treatment was initiated less than three months ago). Individuals with a past history of drug abuse or of eating disorders will also be excluded.

What are the costs of participation? There will be no costs to volunteers for participating in this research study. We will provide volunteers with a parking sticker to cover the cost of parking in the Millbery Union Parking Garage for the duration of each clinical sample collection appointment.

What are the benefits to participants? Participants will receive a no-cost dental examination, a maximum of $40, and the satisfaction of helping advance our understanding of the microbial ecosystem that defines human health!

Where can I get more information? For additional information, please contact the study coordinator, Danielle Drury by email at Danielle.drury@ucsf.edu or by phone at (415) 794-5539.

Funding
This not-for-profit research project is funded by a National Institute of Dental and Craniofacial Research grant (R01-DE23113-001) to Dr. David Relman.

For general information about participant rights, contact 1-(866)-680-2906.

This study's specifics can be found on the hyposalivation.org website, here. 
This post edited on 9/19/2014

Avast, Me Hearties!

Did you know that the "Talk Like a Pirate Day" is this Friday, September 19th? You didn't?

Me either.

That is, I didn't until I read it on the Savage Chickens site. I just love Doug Savage's chickens. He's decided that he will draw a pirate themed chicken cartoon every day of this week. Here's the ones from Monday and Tuesday, but head over there to see them all.

Want to practice your pirate-speak before Friday? Read this.

They'll Be Done by Thanksgiving

I had such a great weekend. My friend Karen came to visit. We've known each other since our college days, and even though we only see each other about three times a year, we pick up where we left off as if we had just visited the day before.

So Friday night, we were considering our options for Saturday which included canoeing around the lake with Karen paddling and me lazing in the back covered in sunscreen -- or to re-cover the dining room chairs.

We chose to recover the dining room chairs. We love a project.

These chairs really need it. They've seen fifteen huge Thanksgiving dinners, and Easter Ham-O-Ramas, and Christmases.

Karen helped me choose the fabric. I decided to go with a darker color. 

There were three layers of stapes in those chairs!

I love the results. Two down and six to go.

Perspective

Do you ever feel a bit powerless when thinking about our disease? As if there's very little that can be done to change the progression of Sjogren's Syndrome?

I do. Especially since it appears that there are so many unknowns about the causes and treatment for autoimmune diseases.

I find this infographic tweeted by rheumatologist Dr. Paul Sufka somewhat reassuring. Empowering. Why? Because the biggest risks contributing to mortality according to the NHS are things over which I definitely have some control:

• Smoking? Never started, so that's an easy one. 
• High blood pressure and... 
• ....High cholesterol can be controlled especially if the next risk -- obesity -- is also addressed. 
• Ah. Obesity. That's an issue for me. 
• Fruits and veggies? Consumed in abundance. Check.
• I find physical inactivity also to be problematic. Granted, Sjogren's and it's fatigue contributes a great deal towards inactivity but for me, there's definitely room for improvement here. 
• I just don't tolerate alcohol any more; so my consumption is zip. Nada. 

It's important for me to see information like this. It makes me realize that while there's no doubt that my autoimmune diseases have had an enormous impact on my life, there's other extremely important factors that contribute to my health over which I DO have some control.

Hm. (Diet) food for thought.

image found here 

Sky Lights

Image found on OregonLive here. 

So, did ya'll stay up last night waiting for the aurora borealis -- aka Northern Lights -- from the recent solar flare?

We did. Well, kind of. Terese, Greg, my college buddy Karen, and some other friends bundled up in sweatshirts, fortified ourselves with adult beverages (except for me) and pointed our eyeballs upwards. It was a beautiful clear night. We saw the moon rise over the Cascade Mountain foothills. We all downloaded and experimented with constellation apps for our smartphones. We yakked away for hours.

But, alas. The promised lights didn't materialize. It could be that there was simply too much light pollution in our neighborhood.

Did you see them?

A Family in Need

Man. I feel kind of ashamed of my self absorption over the past few weeks. My puny issues like dairy intolerance and a rash pale in comparison to the health crisis that my friend and her family are facing.

My friend's mother is entering a very difficult phase in her struggle with Alzheimer's Disease, and the  distress and anguish that it is causing her mother is equally as devastating to her family.

If you pray; please say a prayer for this family,  or send some positive thoughts their way.

And thanks.

Yum

Guys. I've been really feeling sorry for myself.

Me. The original dairy gal. An ice cream fanatic. A milk guzzler. A cheese chomper. And now, all that dairy consumption is a thing of the past, and I really, really miss it since I discovered dairy really, really doesn't like me.

But all the whining and pouting is over. Because I have found THIS:

Hear the choirs of angels singing? It's good. It's THAT good. I was grumping around Whole Foods longingly staring into the ice cream freezer, when an employee asked if he could help me with anything.

So I unloaded all my angst about dairy withdrawal, and the poor guy listened patiently. Then grabbed a container (which was ridiculously expensive, btw) and told me that he guaranteed that this was the answer to my ice cream cravings.

He was right. Even though it was SEVEN DOLLARS for a dinky little two cup container.

Who knew cashew milk frozen dessert tasted that good?

Ahhhhhhh.

I'm thinking that it's probably good thing that it's crazy expensive. I don't see myself forking out all that cash except for the occasional splurge. But just knowing it's out there is a good thing.

Shopping is Therapeutic

Well, guys. After my scandalous butt-baring incident at the pool the other day, I was in serious need of some post traumatic-stress treatment. (I would guess that anyone who was unfortunate enough to see me probably needs some therapeutic intervention as well.)

For me, there's no better way to heal my wounded psyche than to shop. I really do subscribe to the "retail therapy" school of medicine. So I went in search of a replacement swimming suit.

I found this one on Amazon. I like it because there's TWO layers of fabric covering my backside. The attached panty, and the attached skirt. I figure wearing this suit would be kind of like packing an emergency parachute inside your main parachute. If one went.....at least I'd have the other layer. 

Wouldn't it be great if I looked as good as this cute young lady wearing that thing? But alas.....I know better. And I'm certain that this lovely girl is categorized as a "plus size" model. Pfffffttttt. That's ridiculous. 

Don't get me started. 

I'm Glad There Were So Few People Swimming.....

You think I'm exaggerating? I taped the stupid thing to the window to get a picture. Gah!!

Well, guys. Yesterday I finally summoned up the energy to get back into the community center's swimming pool. It's been a long while since I've been there, so I had to rummage around in my dresser to find one of my suits. I grabbed the one closest to the top of the drawer, threw it in my tote bag and headed out.

It felt good to be back in the water again. I love that buoyant feeling. I showed up during a free swim period, so it was a perfect time to ease myself back into swimming. I felt as though I had the whole pool to myself since there were so few patrons there. I paddled around for a bit, then when I felt tell tale symptoms of reaching my energy limit, got out of the pool, showered, and drove back home patting myself on the back the whole way. I might add that I was so proud of myself that I may have actually sashayed from the pool to the locker room. Yeah, Me! I thought.

Then.

On arrival home, I pulled the suit out of my bag and tossed it into the laundry. But something.....odd....about the fabric and color of the suit caught my attention. I grabbed the thing and with increasing panic held it up to the light to get a closer look. Oh my gosh.

I couldn't believe my eyes.

SOMETHING had happened to the fabric of that suit during the months that it had languished in my dresser drawer. Something that disintegrated the deep navy spandex into fabric liberally sprinkled with semi-sheer and threadbare patches. And of course the most transparent part of the suit was.......directly over my backside.

I. Am. Not. Kidding.

Yes.

I wonder how many swimmers noticed as I flounced my plus sized behind back to the locker room. Aieeeeeeeeee!

I suppose the only positive part of this episode is that I was blissfully unaware of the state of affairs as I exited the pool. I wonder what I would have done had I known what kind of spectacle I was making.

Thank goodness there wasn't an aqua aerobics class in progress....

People. Why? Why ME? Why ME -- ALL OF THE TIME?

Falling With Grace: Who's Not Afraid of Falling?

Check out the latest post from Amy Junod, author of the Falling With Grace blog. (Love that title.) It's true, Amy: "....we must all learn to fall before we can take flight." Excellent advice:

"Not long ago Venus Williams was quoted as saying that in continuing to play through illness, "I don't want to fall on my face or do something stupid. Once I'm done I can look back and say I didn't make a fool of myself."  

Being a self certified Falling Instructor, I can tell her that she's doing just fine. Not only is she facing her most formidable foe, Sjogren's Syndrome, with grace and dignity, she's showing the world how to manage adversity. 

There's something so vulnerable about falling that we forget how often we avoid it. Or somewhere in the recesses of our subconscious we totally forget that we all must learn to fall before we can take flight..." Continue reading here. 

I think I have mastered the falling down part. Now I need to learn how to fly.

An Opportunity for Advocacy

Thank you, everyone, for your responses and support following my interesting exchange with an employee of my gym. Terese, also a member of the community center, copied a section of my blog post and sent it along to the manager; which resulted in him requesting to contact me since he was very concerned about the behavior of his staff:

 "....I appreciate you sharing this information with us which is completely inappropriate. I would like to work with staff to immediately address this serious issue."

I was impressed. So I sent him an email. Here's part of my letter:

......I'd like to point out as I did in my blog post that after several years of membership, I have never before experienced any negative feedback whatsoever from any of your staff; so the incident in question must be extremely rare. I did speak to the person, and I think that she recognized her mistake once I briefly explained my autoimmune disease to her.  

In view of this, I would prefer that instead of focus on the poor choice that she made; that perhaps some education of your staff/volunteers is in order regarding chronic invisible illnesses such as lupus and Sjogren's syndrome; both of which I deal with every day. It's almost impossible for your staff to identify us: there's a reason that our diseases are labeled as "invisible", since aside from being overweight or occasionally having skin lesions from lupus, I appear to be relatively healthy. But I'm not. The result of autoimmune disease can be completely disabling.  

For many of us, these diseases sap enormous amounts of energy, which makes exercise very difficult. During flares of my disease, I may only have enough energy to shower and dress then rest for the duration of the day. But exercise is vitally important regardless of how crummy I feel to avoid further deconditioning of my body and atrophy of my muscles. So even though I may only be able to pedal the recumbent exercise bike for ten minutes at a time, this may be the most important ten minutes of my day.  

I'd like to recommend a few sources of information for you regarding autoimmune diseases that you may want to pass along to any of your staff that is interested in learning more:

• This explanation of Sjogren's ("show-grins") Syndrome found on the Sjogren's Syndrome Foundation website.

• This overview of autoimmune disease from the National Institutes of Health. 

• This information regarding the surprising rise in incidence of autoimmune disease from the American Autoimmune Related Disease Association.

There are many other good sources of information; these are just a starting point. 

You'll notice that incidence of these diseases which may cause extreme exercise intolerance is on the rise. This is a very difficult issue for patients to address, and I believe that developing a group of staff members who have some familiarity with these types of conditions should be one of your priorities in meeting our community's needs; since finding that correct balance between "enough" and "too much" exercise is critical. Too little and energy supplies continue to dwindle; too much and the person may have a serious increase in their disease activity literally putting them on bed rest for a period of time. Patients like me often become frustrated and disheartened as they struggle to do small bits of exercise and see others much older or having what appears to be more serious medical conditions able to do far more than they can. I and people like me need all the positive reinforcement that we can get to motivate us to continue.....

Isn't it interesting that a crankiness-inducing conversation resulted in an opportunity to do some serious advocacy work for autoimmune disease?

Accessorizing

Terese's birthday was last week. Everyone wave at Terese! Yoo Hoo, Terese! Happy Birthday!

(Notice my restraint in referring to a particular person's age?)

I always enjoy buying birthday presents, but this particular shopping trip was especially enjoyable. Because I had a theme. I LOVE theme presents.

I had decided that Terese's workspace was far too......plain. Mundane. Boring. Blah. Aha! I had my theme: items to bling up her desk. So I headed over to one of those big discount stores. I plopped myself onto one of their scooters and began to cruise the store.

I knew I was really onto something when I came across this:

Yessssss! A bling-y gold tone Swingline stapler. And I couldn't believe my luck when THIS was right next to the stapler:

Gold scissors! Brilliant!

I thought the weiner dog tape dispenser was a bit much.

One can't be too flashy, after all. .::sniffing haughtily::.

I picked up some gold-tone file clips and metallic toned Sharpies. But I thought this gift still needed something to add a little punch. Hmmm.....

I was circling the store in search of that special item that would coordinate the overall effect. When I spotted a necklace somewhat like this, I knew I had my answer. I needed to bling out Terese, too.

The one I chose for T had much bigger beads and was far more shiny. Ooooooo.

I made her promise that she would use each and every part of her fabulous gift on her next workday. I think I'll make a surprise visit to be certain that she does.

Oh, boy! Now I can start scheming planning for her Christmas present...

Shade and Shadows

The weather here in the Pacific Northwest has been glorious this past week: cool, breezy, and just the right amount of clouds drifting in clear blue skies. So I was cranky when I saw that our forecast now includes hot hot hot weather.

Mother Nature? Um. It's September, for cryin' out loud. Bring back the cool crisp fall days, mmmkay?

Hot and sunny weather means that I hibernate inside the house for a good part of the day, and while I'm thankful to be cooped up in a cool comfy place, I feel trapped. Kind of. So I was grumping around yesterday morning. I looked outdoors at about seven thirty AM and realized that the temps were still around mid '60s, and the sun was still low in the sky casting long inviting shadows.

Well, now.

I grabbed a surprised Lulu (I haven't taken her on a walk for ages), hopped into the car, and drove down the hill for barely five minutes to a local lake where the scenery was gorgeous and more importantly, exquisitely shady. I could stroll around and stay completely in the shadows yet enjoy seeing this:

Lulu told me she wished that we could be out there in that canoe. I agreed.

I've got to remember this for future hot and sunny days. I can't believe I didn't think of it before.

But then there's that whole waking up at the crack of dawn thing......hm........

I'm Doing The Best That I Can

Well, guys. I'm sorry to do this to y'all but I can't stand myself. And besides, I'm long overdue to write a post that's basically a rant so here goes.

I've been going over to the gym at the community center with some regularity over the past month.

.::patting self on the back::.

I don't swim yet because even though my rash is definitely better, I'm wondering if all the chlorine in the pool will only irritate it further and I'm still kind of embarrassed by it. So instead of skipping exercise altogether, I just head over to the exercise machines. I pedal away on one of their excellent recumbent bikes for twenty minutes, and then I spend another ten minutes on what looks like an exercise bike turned upside down, so that you grip what used to be the pedals and use your arms to power the thing.

Our gym has one exactly like this. I wish they had more.

Image found here. 

Yesterday, after completing my thirty minute session and feeling smug because I actually broke a sweat doing it, I headed out of the center. One of the staff members who had seen me come in noticed me as I left. She said, "WELL. That was a quick workout!" and rolled her eyes.

How snarky was that?!

My first reaction was guilt. Yeah, I thought. What I'm doing here is pretty pathetic compared to everyone else...

But I stopped in my tracks as I realized what a dumb stupid thing that was to say to someone. And that I had nothing whatsoever to feel guilty about. So I made an about face and walked back to the senior citizen woman, who had dry frizzled bleached blonde hair, was dangerously tanned into human leather, but yes, was very fit.

"I'm doing the best I can," I said calmly.

She looked at me with a shocked expression.

"I have an autoimmune disease which severely limits my energy. The fact that I can get here at all is an amazing thing. So thirty minutes of any kind of exercise is a real accomplishment."

I turned on my heel and left her blabbering something like, "Oh, I didn't mean to sound that way, I just blah blah blah blah blah..."

I didn't hang around to hear her finish speaking because 1) I didn't hear her use the word "sorry" in that sentence, and 2) by then I was royally hacked off and I would not have been able to continue the conversation in a composed manner. What I was tempted to say to her wouldn't have been pretty. Or nice.

It's been awhile since my hackles were that raised. (What the heck is a hackle, anyway?) I fumed all the way home. Good grief. There were lots of other gym members in the area, and I'm sure they heard her comment. I hope that  they listened to my response as well.

I've never felt anything but positivity and encouragement from this staff, so I was shocked. This is the first time that I've ever felt any kind of negative judgement whatsoever over at the community center, and I'm resolved that it won't bundle my undies sufficiently to keep me from going back. And if I EVER hear anything snarky from this or any other staff member......well. Our conversation will be considerably more animated. And will involve someone's supervisor.

I'm thinking that her hair lightening treatments bleached her brain as well.

While We're on the Subject of Travel.....

You can read about author Toni Bernhard's experience with chronic illness here. 

....I suggest that you head over to the Psychology Today blog written by Toni Bernhard, J.D. Her recent post entitled "What It's Like to Take a Vacation While Chronically Ill found here is a good example of how energy-sapping illnesses changes the travel experience.

....Am I sorry I went? No. I freely agreed to go. I’m writing this piece to share what it can be like for a sick person to travel. Thankfully, it’s not this difficult for everyone who is chronically ill (which includes those who are in chronic pain).
Nevertheless, I thought my experience might be helpful to others, both to those who are chronically ill and to their family and friends. Continue reading here. 

The Only Way I Can Do it.....

Several readers have asked recently how I manage to travel with Sjogren's. "What's your secret?" they've asked. 

Well, to be honest, the only reason that I am able to get out and about is that I have John. I'm so fortunate that he can be flexible with his vacation hours, he's patient, he's willing to do all of the heavy lifting, and completely understands when my health causes our plans to change. He knows me so well that I swear he can read my mind: when I'm exhausted and need to leave a social situation and our eyes meet, I need never say a word. He makes tactful and rapid good-byes and whisks me out the door. 

If I had to travel without him, I suppose I could manage short trips rarely; but the kinds of vacations we have taken would never, ever happen if I had to go alone. 

I'm blessed.