I'm Not Invisible Anymore

I love iced coffee in the summertime....

It's been a really interesting experience.

Walking with a cane, I mean.

Before Candy the cane entered my life, even though I may have limped a bit, my illness was still invisible. Yesterday, I went out shopping for the first time with a cane, and I was astonished at the other shoppers' reaction to me.

I had doors opened for me, salespeople were exceptionally solicitous, one gentleman even told me to go ahead of him in the checkout line. (I politely refused.)

I feel guilty about receiving all this attention, because the fact is this: I feel better now than I have in YEARS. Yes, I'm using a cane for my trochanteric bursitis, but when I use the thing, I'm pain free. And my energy levels are higher than they ever have been, thanks to my mousie drugs. So even though I may look more pathetic, actually I'm in better shape than I've been for a long time.

I suppose there could be other reasons for the looking pathetic thing, hm......I am so overdue to have my eyebrows waxed.....and oh, man, we've been eating a lot of ice cream lately.....yeah....

I'm realizing that this (hopefully temporary) use of a very visible assistive device has made something other than my bursitis obvious: that invisible illnesses really truly ARE invisible. I found myself wondering where all this compassion was when I was lying on the floor of a Starbucks bathroom a couple years ago, covered in sweat, quivery with exhaustion and totally dopey in brain-fog land? Or when I was sitting in a parking lot looking stupidly at my car's dashboard and trying to remember how to drive? Or.....

But.

It's silly to try to compare others' reactions to a visible vs an invisible illness. It's called invisible because it's not obvious, duh, Julia.....

I Think I'll Keep Her

You knew it had to happen, didn't you? In the process of bonding with my new assistive device, I've had to name it.

Meet Candy. The cane.

I took her on a test run to Mass this morning, and I have to say she performed admirably. I briefly thought about leaving her in Goldie during church.......but decided that I would probably have to give in and walk her around during Mass sooner or later. So it may as well be sooner.

I'm liking walking without pain.

As far as blinging Candy, I had an excellent suggestion from my college buddy Kathy, who shares the whole joint and cataract issues with me. I just wish we also shared her petite size. Ah, well....

Kathy wrote: "I have seen many patients in our Joint Center with a wide assortment of cane sleeves.  They are skinny cloth sleeves they sew a seam to fit over the cane (remove the end stopper first, add the sleeve, then replace the stopper).  I've seen Packer, Badger, flowers, colored stripes, holiday themes...you name it.  Not sure if they have hit Washington state....but they are popular here.  They said they make and sell them at the senior craft center.  The best accessory I have seen is a child's bicycle bell and horn.  I can see you having fun with the bike bell."

A bike bell! Or, better yet, one of those Aooogaaa horns! Kathy knows me too well.

I love a shopping quest!

Hang in there Candy, honey. Your plain-Jane cane days are numbered.

Fabulous, Dahlink.

We Need a Different Poster Child

July 23rd was World Sjogren's Day. Why July 23rd? Because that's what would have been Dr. Henrik Sjögren's 112th birthday. I have to admit that I totally forgot to write a post about what should have been for me a very significant day.

In all honesty, I have issues with the use of the word CELEBRATE in a sentence that also contains the words SJOGREN'S SYNDROME. I know that I should be very grateful to Dr. Sjogren, who identified this disease all those years ago, and the celebration linked to his name relates to the fact that someone, anyone, out there in the medical community back in 1933 cared enough to document and name this disease. That's worth celebrating, I'll admit.

But I am still cranky about having to live with his discovery day after day after month after month after year after year. Other sjoggies have shared the same feelings, in fact one reader in particular commented that she never capitalizes the word Sjogren's: she said that it didn't deserve a capital S.

Now THAT'S admirable crankiness, people. I like it.

I would agree that there definitely should be a World Sjogren's Day, absolutely. But I think that the whole concept here needs a little...........softening. A little jazzing. A little.......something........other than this:

Cranky-looking Dr. Sjogren image found here, on Wikipedia

Sorry, Dr. S. I am so grateful to you for your discovery. But, honey, and don't take this the wrong way, OK? I just don't see you as the face of Sjogren's.

And I mean that in the best. Possible. Way. Really.

Dr. S.........first of all, I realize that we have very few pictures available of you other than this very grainy black and white image, which does appear very professional and clinical. But one must concede that your um.....affect.....and demeanor.....well, it just doesn't project......... celebration, does it. I know. It simply wouldn't do for physician in a professional photo to appear anything other than sober and wearing a white lab coat. It's not your fault, here, Dr. S. I'm not criticizing YOU.

I'm just thinking that if the Sjogren's syndrome community wants to truly grab the general public's attention about our disease on World Sjogren's Day, we should have some other image to represent us. In other words, Dr. S.....I just can't see your face on a Sjogren's syndrome coffee mug. (Your mug on a mug! Get it? Get it? sorry...)

I wish that I could do something other than point out the deficiencies of this awareness campaign. I hate it when people whine about something and then don't offer their idea of a solution to the problem, but of course that's exactly what I'm doing.

Hm. I guess what I'm trying to say here is this:

World Sjogren's Day is a great idea.

But.

DON'T use the word "celebrate" in the publicity around it. And for goodness sake, please don't use Dr. Sjogren's photo, either.

So. Who should be the face of Sjogren's syndrome? Or the image? Or the icon?

Well. This is NEW

I went in to see a physical therapist yesterday after Dr. Young Guy made a referral. He wanted me to learn some exercises that would help reduce my pain and inflammation with the trochanteric bursitis that has been plaguing me for about a year or so. Even steroid injections into the bursa have been unable to completely relieve the pain. If you want to read more about the pain in my tuckus, although I can't imagine why, you can read more here.

Wah wah wah.

I left my appointment with several items that I had expected: a visit summary which included detailed instructions on strengthening exercises, one of those cool yellow stretchy therabands, a reminder of my return appointment, and.......

....something that I never dreamed I would throw into the passenger side of Goldie.

Yeah. A cane.

My therapist held one out to me as she was evaluating my gait -- or the way that I walk. "You're limping," she observed. "Try this. Like this." She demonstrated the correct use of the cane.

I was flabbergasted. A cane? "Um, no. I don't think I want to use one of those."

"Just try it." Bless her heart, she didn't roll her eyes. At least not when I was watching her. "Just try it. Does it make your hip feel better when you walk with it?"

Dang. It did. It REALLY did. As a matter fact, not only did my hip feel better, it was the first time in ages that I was able to walk completely pain-free.

"You don't have to use it forever, you know," she commented. "We're just giving that inflamed bursa a chance to rest until the injections and exercises can truly settle things down."

I walked in the house brandishing my new dumb stupid......wonderful......accessory. John eyed me and said, "You're supposed to walk quietly if you're going to carry a big stick, hon.."

Har. Har. Har.

I'm deciding how much I'm actually going to use this thing. If I start using it everywhere I go, I'll have some serious explaining to do after I made such a big deal to my friends how much BETTER I feel since the rituximab infusions. But I DO. Aside from the Tr B pain, I do feel better. I think that my increased activity levels have made it easier for me to get out and walk and exercise, but in doing so,
have kicked up my hip issues.

Hm. Walk without pain.........or spend a few minutes yakking with people. Guess I've decided.

Ooo. I could accessorize my newest accessory! Hm. How do you add bling to a cane.......?

Carrying the Torch for Sjogren's

Awesome sjoggie Venus Williams found here. 

I can't wait for the Olympics opening ceremony to begin tonight! Are y'all watching? What events are you most interested in?

I was thrilled to see Venus Williams taking part in the Olympic torch run a few days ago at Wimbledon.  I was even happier with her tweet: "To carry the olympic torch on World Sjorgrens Day represents strength 2 triumph for every1 with autoimmune disease!"

That's our girl! Bring on the games! And let the best woman win.....

Seems Like Yesterday

Awwww. Yesterday was a fun anniversary: Thirty four years ago, John and I met for the first time. On a swimming beach. At three thirty in the afternoon. We've been together almost every day......ever since.

We're such a romantic couple. We celebrated by John having a cyst removed from his hard palate by an oral surgeon.

What can I say....just two kids crazy in love......

Don't Do This.

I keep all of my medication bottles in this very high-tech shoebox. Nothing but the BEST for my meds, yessirree.

I hope that no one out there is holding me up as the standard for a model Sjogren's syndrome patient, is there? Because that would be really a dumb thing to do. Here's yet another little example of why my behaviors are things that a rational person should not imitate:

I've mentioned earlier that Dr. Young Guy is putting me on a regime to taper off my daily oral prednisone. Currently I'm on 10 mg., and his instructions to me were to decrease the dose by one mg. every three weeks. So unless there are issues, after 30 weeks, I will not be popping prednisone on a daily basis.

Woo hoo!

Which also means that my dumb stupid prednisone-induced cataracts shouldn't ever get any bigger.

Dr. Young Guy wrote prescriptions for 1 mg. prednisone tablets and 5 mg. tablets for me, after which I blithely waved my hand dismissively. Oh, I've got plenty of those at home, I told him.

And I do.

So I went home, had John figure out on the calendar exactly what my taper schedule should be, had him print it out so that I could put the schedule up on the inside of my cabinet door where I store my meds. Nine mg., I kept telling myself. Nine. I took out my stash of prescriptions, rummaged through it, and found my bottles of 1 mg. and 5 mg. prednisone pills.

I checked the doses very carefully. You don't want to mess around with this stuff. Could be problematic. Seriously.

So I refilled my day-of-the-week pill box with the appropriate dose: One 5 mg. tablet PLUS four 1 mg. tablets each morning, after which I almost broke my arm patting myself on the back for being so organized and responsible.

(Guys. You know what's coming next, right? This scenario is far too doofus-free for it to be occurring in my house.)

After two days on my newly-reduced dose, I noticed that I was feeling a bit iffy. The symptoms were hard to pinpoint, but I just wasn't feeling......right. Kind of shivery. Kind of like I was running a temperature. And more tired than usual. Could this be a reaction to reducing my prednisone by only ONE mg.? I wondered. I googled "prednisone withdrawal symptoms" and read this, found here:

     "Corticosteroids must be gradually reduced so as to permit the adrenal glands to resume natural cortisol production. Eliminating doses too quickly can result in adrenal crisis (a life-threatening state caused by insufficient levels of cortisol).
     In cases where corticosteroids were taken in low doses for long periods of time, tapering can continue for months or years. Sometimes doses are lowered one milligram at a time to prevent flare-ups. When steroids are taken for shorter periods of time, tapering is more rapid and decreases in dosage can be larger.
     Another possible complication to coming off steroids is steroid withdrawal syndrome, or rebound effect, which is the body's exaggerated response to removal of the drug. Rebound effect can result in fever, muscle pain, and joint pain making it hard for the physician to differentiate between withdrawal symptoms and a flare of the disease itself." -- Scott Zashin, MD

Well, I thought. It certainly appears that I'm tapering at an appropriate level.....hm.....slowly tapering over many months, yes, yes.....

Then. A thought occurred to me.

Dang. Was I REALLY tapering slowly? Oh, crumb. I made a beeline for the 1 mg. prednisone bottle and anxiously scanned the label for the.......expiration date. Which was January, 2009. Three and a half years ago. Good grief! Who knows how much actual prednisone was left in those very, very outdated pills??

So. If I assumed the worst possible situation: that the outdated 1 mg. pills were totally void of prednisone, (a frantic check confirmed that the 5 mg. pills were fine,) this meant that for the first two days of my supposed taper, instead of reducing my dose by 10%, I had actually reduced it by a whopping 40%. I'm guessing in actuality, there was still some viable prednisone in the pills, but who knows?

Yikes. No wonder I was feeling rather weird. Or, more weird than usual.

I hopped into Goldie and we zipped directly to the pharmacy and refilled our prescriptions with a new, fresh supply of prednisone. And, after two days of taking the correct dose, now feel just dandy.

But rather sheepish.

Today's task is to go through ALL of my meds and check the expiration dates. Lesson learned.

You can read more about medication storage and expiration dates here.

What A Match

.::hushed announcer tones::.

Welcome to the much anticipated croquet match between Godson and Uncle John here at the J and J world-class United States Croquet Association sanctioned court. It's a glorious evening for this competition between these two gentlemen.

Don't let their relaxed postures fool you, folks. This athletic duo has a long history of fierce competition.

After lengthy debate, these two croquet warriors have agreed upon a modified version of the official professional American court set-up.

Preferred court set-up. 

The modifications to the official court layout were inspected and approved by J and J's highly-regarded groundskeeper, who prefers to maintain his court surfaces with a mix of varied grasses and weeds rather than the more traditional grass varieties:

Suggested Minimum Cutting Heights Of Some Turfgrass Species RELATIVE HEIGHT INCHES SPECIES Very close 0.2 Creeping bentgrass . Velvet bentgrass Close 0.3 Colonial bentgrass . Annual bluegrass . Bermudagrass . 0.4 Chewings fescue . 0.5 Perennial ryegrass . Zoysiagrass . Rough Bluegrass . Buffalograss Medium 0.75 Kentucky bluegrass . 1.0 St. Augustinegrass . Centipedegrass . Carpetgrass High 1.5 Red fescue . Meadow fescue . Bahiagrass . Tall fescue . Fairway wheatgrass Very high 3.0 Canada bluegrass . Smooth brome

Here Groundskeeper BB, aka Baby Brother, performs a close examination of blade length and the modified circuit of play. 

The spectators in the galley (joined by Groundskeeper BB) awaited the first decisive stroke by Godson with baited breath. 

They were not disappointed, as Godson took careful aim and whacked the ball with precision.....

.....leaving Uncle John to contemplate strategy in the face of his opponent's stupendous skills. 

Fearful that his chances of winning this match were significantly diminished, Uncle John called for a rules variance which would allow a baseball-style method of ball-whacking. Godson graciously gave his consent, and assisted in the delivery of the croquet ball pitch.

The match was suspended briefly as Official Croquet Referee Lulu, sporting a black and silver uniform, contemplated this highly unusual technique. Moments later, she grudgingly allowed play to continue.

"I can't BELIEVE I allowed that...."

Play then proceeded at a relentless pace...

.....until Julia, one of the esteemed J and J Croquet Court owners, declared a brief blueberry break.

Refreshed and re-invigorated, Godson completed his victory with one masterful stroke, celebrating his win with the traditional lap around the grape arbor.

We are pleased to report that Uncle John accepted defeat gracefully, although was heard to comment that he looked forward to their next meeting: "Just wait till next time, big guy...."

......to which Godson spiritedly replied, "Anytime. Anywhere. I'm there."

Then zoomed off to his next match amid crowds of adoring fans.

We, too, look forward wholeheartedly to their next meeting. 

Charles, Charles.....

Amy Dorret found here. 

I'm a big fan of the PBS Masterpiece Classic program, and I've been enjoying the Little Dorret series in particular.  Not familiar with the story by Charles Dickens? Here's the plot summary from PBS:

"Amy Dorrit's (Claire Foy) gentle spirit has never been dampened by the confining walls of the Marshalsea Prison she's lived in her whole life. Despite the dark shadow of debtor's prison, Amy lovingly cares for her father William Dorrit (Tom Courtenay), the longest serving inmate. A possibly redemptive light unexpectedly shines in the form of Arthur Clennam (Matthew Macfadyen), who has been left with the intriguing threads of a mystery after his father's death — threads that will intertwine his family and fate with the Dorrits. Clennam's exhaustive search for answers involves murder, fortunes gained and lost, the upper echelons and lowest dregs of society, and most surprising of all, a tender romance...."

Masterpiece Classic host Laura Lynney provided tidbits of biographical information about Charles Dickens before each segment of the series. Mr. Dickens lived a very complicated life, and it was quite enlightening to see how his life story appeared in various ways in his writing. In reading Dickens' books, I have always appreciated his recurring theme: that kindness and "goodness" will always ultimately be rewarded, and I rather naively assumed that since his writing had strong autobiographical elements his actual personal life would reflect those same themes.

But.

In her narrative before the final segment of the show, Ms. Lynney discussed Dickens' marriage. I couldn't find a link to her actual quote, but the gist of what she said was this: Mr. Dickens married Catherine Hogart and fathered ten children with her. As 22 years passed, Catherine became older, fatter, and most importantly: chronically ill. And, unlike the devoted and loving heroes and heroines in his novels, Dickens took an eighteen year old mistress and deserted his wife.

Really, Charles? Really? Amy Dorrett would NEVER have abandoned her father, even though he was an mentally unstable man living in debtor's prison. And her devotion to Arthur was life-long. And, and......

My disillusionment is rather silly, I know. Dickens' work is fiction. And it's unrealistic on my part to hold him to any ethical standards at all. But it did reinforce evidence of behavior that is still unfortunately not unusual in 21st century life. The point I'm trying to make here, and actually there is one, is that the fact that many of us, similarly to Mrs. Dickens, lose important relationships as we too become older, fatter, and chronically ill. I've received countless letters from people - both men AND women - who were deserted by family and friends as their disease progressed.

How profoundly sad. And what a test of a person's true character.

After the conclusion of Little Dorret, I found my husband and gave him a very long appreciative hug. And though I have lost relationships as a result of my chronic illness, I spent some time thinking about those wonderful people who have stayed with me as I too became older, fatter, and chronically ill.

Thanks, guys.

The Mice Invasion Will Continue! YESSSSSSS!

I want to thank everyone for their emails and comments regarding my recent wah-wah-wah thing.

Y'all are great. Seriously.

But I wanted to explain just a bit more about why my reaction to my prednisone cataracts was similar to "Chicken Little and the sky falling", to quote my friend Shara. Who also made the hilarious comment about cataracts: "I thought they were as easy to treat as warts are...."

Ha! Oh, my......now I've got this interesting mental picture that equates cataracts with warts......goodness gracious. Thanks, Shara. Thanks a bunch, girlfriend.

I promise not to unleash BICJ again here, but I think the reason she really went hysterical actually had very little to do with the cataracts.

I was worried about the implications that this had on my rituximab treatments, since protocol with these infusions require very large doses of prednisone, both oral and IV. Would these dumb stupid cataracts indicate that I wouldn't be able to receive these treatments anymore, and just when I was feeling as though I was reaping the benefits?

During my appointment with the always excellent Dr. Young Guy, he put my fears to rest.

"No.....I'm not worried about the prednisone that goes with the rituximab protocol. It's the ongoing daily dose that has me concerned with the cataract thing. So since you're doing so well with the rituximab, we'll plan on continuing those infusions. We'll just taper you off the daily stuff."

Ahhhhhhhh. This was very VERY good news. So good, in fact, that I was happy to give him his latest treat: chocolate mousie truffles.

Is that the cutest thing ever, or what?? They're made by Moonstruck Chocolates, a fabulous chocolate shop in Portland, OR. Wonder if I could shamelessly copy these somehow.....hmm......darn. Research and development of chocolate truffles can be so trying.....but, if I must, I must. Sigh.

Betcha I know some folks that wouldn't mind being part of the research team.

One of These Things is Not Like the Other

Can you guess which one? Here's a hint: It's not a schnauzer.

Give up?

It's my right leg. OR my left leg, depending on one's perspective. At any rate, they don't match.

My right leg is shorter than my left. I came into possession of this interesting little tidbit of information during my appointment with Dr. Young Guy today; who listened very patiently to my wah-wah-wah list (more about that another time) which included, among other things, my continued problems with trochanteric bursitis and resulting pain in my hip and gluteal muscles.

In other words, I have a pain in the ass.

Notice that I said HAVE. Not AM.

My goodness.

Although after all the whining I've done over the past few days, there might be several that think that those words actually should be exchanged...hehe.

After today's appointment it appears that the pain in my, um......gluteus maximus.......should be a thing of the past, with the aid of some physical therapy sessions, a lift in my shoe, an ice pack, and an expertly placed shot of glucosteroids in the offending bursa. Thank you, thank you, Dr. Young Guy!

You can read more about the treatment of trochanteric bursitis here.

Frozen corn makes the best butt-soothing reusable ice pack ever.

I wouldn't recommend eating this particular package, if you're ever reaching for frozen veggies in MY freezer. 

Well. I'm Glad That SHE'S Gone!

There's been a noticeable lack of discouragement in my life for the past few months. Things have been going far too well around here, and I could sense that my Bratty Inner Child Julia has been moping around with very little to complain about, which was a very satisfying feeling.

But after my eye exam? Oh, brother.

After I heard the crummy news about my dumb stupid (but itty bitty) cataracts, BICJ literally rubbed her hands together with a renewed sense of purpose.

BICJ loves bad news. Yes, she does. She perked right up and sprang into action:

This calls for some serious self-indulgence. Hmm....think I'll send out a few Woe Is Me texts. Yeah. And then......oh, right.....better call Bev and do some significant whining. MmHmmm. I mean, she's got a real easy life, well, except for providing 24/7 care for her mom that has Alzheimer's, pffft. Having a bit of a blurry right eye -- just a bit, but golly gee -- trumps dementia any day.


Ok, what else.....ah. Yes. Dairy Queen Blizzard required. I'm thinking that this level of self-pity wallowing requires......hm. Vanilla ice cream, plus peanut butter syrup, plus Butterfinger candy bars, wait....make that two of the Butterfingers. Small size?  Please. We're talking my EYESIGHT here. Large. Definitely ordering a large. John? Honey? Drive through immediately. Get on it.


AND. Let's see. I think it's time to ratchet up the whole angst thing. Yes. I should pour energy into creating a huge imaginary catastrophic scenario that zaps all of my reserves. I can throw myself dramatically on the couch and alternate pouting with lapping up ice cream. Oh, and sighing heavily.


I'm such a good sigh heaver....

Oh, man. BICJ was in rare form yesterday. By nightfall, I was in bed, semi-comatose from the exertion of a fretting marathon plus a GI system working overtime to digest my Blizzard.

I woke up this morning feeling as though I had a hangover.

Um. Or what I imagine a hangover would feel like. Goodness.

Thank goodness BICJ is nowhere to be found today, and she'd better not show up again any time soon, either. Good grief. So glad that I can put things back into perspective today. I know that this is a manageable issue. I know that I won't lose my sight. I know that there are other treatment options for me. I know that there are far worse health, financial, and personal problems that others are currently facing.

And I know that I don't need any more hysterics. So there.

Ewww. Image and disgusting nutritional facts about a Butterfinger Blizzard found here.

It's Not Due to Farkling

Dumb stupid prednisone. 

Yesterday, I appeared at a new clinic for an eye exam. After forking over my co-pay and finishing all of the usual check-in routine junk, I squinted down the hallway.

So.......where's the eye department? I asked.

The receptionist giggled and pointed at a large sign directly in front of my line of sight.

Oh, geez. Good thing I'm here to have my eyes checked, huh?

She nodded with her hand covering her not-very-well-concealed grin. Good grief in a bucket. I settled into the reception chair with some embarrassment, glad that I was the only one in the waiting area. I was quickly called back to the exam room and greeted by my new optometrist. Who, by the way, looked to be all of fifteen years old.

What is it with all my doctors retiring lately? And they're all being replaced with adolescents!

She seemed to be a real smarty pants, though, and it didn't take long for me to realize that I was in good -- albeit young -- hands. "So. What's going on?" she asked.

 I told her that I had made this appointment since I had noticed some blurring in the vision in my right eye, and she quickly went to work with yellow eye drops and green eye drops, air-puff machines, and several weirdo machines placed in front of my face. And, of course, the lengthy Which Is Better? A......Or B? game.

Whew.

After which, she crossed her arms over her chest and told me that I had begun to develop cataracts.

What? Is it because I'm really OLD? I asked. Fifty five is pretty old....

She laughed. "Nope. Fifty five is not old." Bless her little heart. Then she said with a significantly more serious expression, "I can tell that these cataracts aren't age-related. They're because you've been on prednisone for such a long time."

Yikes. I listened as she rushed to assure me that these cataracts were small, and the one in my right eye was nearer my center of visual field, which was what made it noticeable to me. She was referring me to an ophthalmologist, who would do more eye dropping and air puffing and weirdo machine-ing.

I had to sit quietly and let that news digest. I'm still pondering this little tidbit of information.

I'm trying not to freak out here.

I could have significantly worse things happen to me as a result of this disease. With a decrease of my prednisone, or ideally eliminating prednisone from my daily stack of pills, it's a good bet that these cataracts will not continue to progress. I hope. But....but....what if I CAN'T get off prednisone?

It's a really, really good thing that I have an appointment with Dr. Young Guy on Friday, during which I can pick his brain with all those questions that I have regarding prednisone induced cataracts. You can read more about prednisone here, and cataracts here.

And to think that I was convinced that my blurry vision was due to my extreme iPhone dice-game sessions.

Well, then. Farkle on, Julia.......Farkle on.