April Sjogren's Awareness

Awhile back, I asked y'all to share your Sjogren's syndrome awareness stories, and this one by AutoimmuneGal, is a goodie. Head over to her blog to read it in it's entirety:

"....I sported my Sjogren's tee-shirt and joined the other walkers on a sunny, chilly morning.  Besides walkers, there weren’t many people out on the street.   While I enjoyed the walk and the camaraderie of being with others with Sjogrens, I did question whether we were really having much of an impact.  Where were the crowds I had seen at other advocacy walks and the publicity that often accompanies them?
     But in the midst of these thoughts, as I was leaving the walkabout I had an interaction that ended up changing my perspective and turned out to be the highlight of that day for me......" continue reading here.

And while we're on the subject of awareness, I'd like to thank everyone that submitted their AWESOME ARTWORK for the Creativity Challenge! Finalists will be announced as soon as I can corral the judges, so stay tuned!

It IS a Heavy Burden

Thanks to a twitter follower who recently tweeted a link to this Sjogren's-researcher-who-GETS-IT article, entitled Sjogren's Carries Heavy Disease Burden, and found here on Medpage Today:

"We have carefully observed these patients over 25 years, and the main message of this study was that patients with primary Sjögren's syndrome have a substantial burden of disease over their lifetime, and careful surveillance is clearly warranted," she concluded.

Head over to read it all.

Calvin/Julia/Sjoggie/Ball

Image found here. Thank you, Bill Watterson, for creating this fantastic cartoon strip. Hmmm. I hadn't noticed the remarkable similarities to Calvin in my own children before.....

I've spent the past few days feeling pretty smug.

I should know by now that any form of Julia smugness equates to the appearance of an enormous comeuppance. And, true to form, it did. After sashaying around the pool and locker room and running errands in the sunshine and inwardly gloating to myself about it all this week, today I find myself spending far more time than I'd like horizontal.

Two steps forward......one step back......two steps......?

If I don't behave myself and listen to what this old body is telling me which is to just put myself in bed for some serious rest, I'll be taking two and three and four steps backwards. Dang. I have things to do and places to go and people to see.

The thing about this little exercise tit for tat is that I don't know what the rules are -- except for the cardinal one that says, "pride goeth before a fall." That's a constant.

Crumb.

This feels like playing some kind of game for high stakes, but having no clue how to play it. Games without rules are SO NOT FAIR. I feel as though I've been dropped into of one of my favorite comic strips of all time: Calvin and Hobbes. C and H play Calvinball frequently, and here's the (un)rules:


The only consistent rule states that Calvinball may never be played with the same rules twice. Scoring is also arbitrary, with Hobbes at times reporting scores of "Q to 12" and "oogy to boogy". The only recognizable sports Calvinball resembles are the ones it emulates (i.e., a cross between croquet, polo, badminton, capture the flag, and volleyball.) Equipment includes a volleyball (the eponymous "Calvinball"), a croquet set, a badminton set, assorted flags, bags, signs, a hobby horse, and enigmatic and never-pictured "time-fracture wickets". Other things appear as needed, such as a bucket of ice-cold water, a water balloon, and various songs and poetry. Players also wear masks resembling blindfolds with holes for the eyes. When Rosalyn asks Calvin the reason for the requirement, Calvin responds, "Sorry, no one's allowed to question the masks." When asked how to play, Watterson states, "It's pretty simple: you make up the rules as you go."


Although I haven't the foggiest notion what's going on, I have the sinking sensation that I'm not winning this match. Hey! Mr. Watterson? Calvin? HOBBS?!?

When is MY turn to make up the rules?

Yoga Yeah!

I think it happened when I was attempting the eagle pose, found here. I didn't look like an eagle. More like a dodo bird. 

Guys. Guess what? I have a pain in my ...... um ..... tukus! And I'm happy about that! I can see that y'all are a bit mystified.

Righto. I'll clarify: I have pulled muscles as the result of EXERCISING. On purpose! And, I suppose I should further confess that actually I only have ONE pulled muscle in my general gluteus maximus area. That's right: only one half of my bum is feeling bum.

Too much information?

I've discovered a very, very low intensity exercise class at our community center pool. It's called "Aqua Yoga", it meets twice a week, and lasts for only thirty minutes. For someone who is so very energy limited and owning a very de-conditioned body, this is perfect. I can bob and lurk in the back corner of the pool while attempting the poses as I'm able.

And trust me. I'm really not able. Thank goodness for the side of the pool providing support so that I'm not toppling over face/head/backside first every time I get wobbly. It's not pretty folks, but for whatever reason, I must have been stretching at least half of my backside enough yesterday to earn a sore muscle. Singular. Next week I'll aim for two. After all, yoga is all about balance, I believe.

Woo hoo!

I may not even ice it. Or take ibuprofen. Maybe I should put a sticker on my butt that says: THIS LARGE OBJECT HAS BEEN EXERCISED! SO THERE!

I think I'd better lie down....don't want to over-do things.....

Teri Rumph, PhD on Fatigue

This excellent article was posted to the Sjogren's Syndrome Foundation facebook page by a group member. I wish that I could find the original in my stash of old Moisture Seekers newsletters to verify.  Regardless, it's a great read. Enjoy:

ELEVEN TYPES OF FATIGUE
By Teri Rumpf, PhD

Published in The Moisture Seekers by Sjogren's Syndrome Foundation
Volume 21, Issue 7
Summer 2003

How are you?" I asked a friend who has Sjogren's syndrome.
"Tired," she said, "how are you?"
"Tired," I replied, knowing we understood each other. We were talking about a special brand of fatigue. Later that day, a friend who did not have Sjogren's asked me the same question. "How are you?" she said. "Fine' I responded, thinking it was the simpler way to answer a basically rhetorical question.

Not everyone with Sjogren's syndrome suffers from fatigue, but many of us do, according to the two excellent articles by Dr. Fred Vivino in the March and April, 2003 issues of The Moisture Seekers. Quoting a study done by Dr. Evelyn Bromet, Dr. Vivino said that SSF members had listed fatigue as the third most troubling symptom of Sjogren's, after dry eyes and dry mouth.

Fatigue has been a problem more disabling than dry eyes or dry mouth for me. I long for normal energy and the ability to sustain an activity, any activity. I long for the kind of fatigue that gets better when you get a good night's sleep. I wish I did not have to pace myself, to plan rest stops and to just be able to get up and do, but, reluctantly and somewhat resentfully, I know that fatigue is a part of my life. Having decided that if you must live in a particular landscape, you should learn the subtleties of the territory, I've come up with the following categories. Your list may vary:

1. Basic fatigue. This is the inherent fatigue that I attribute to inflammatory, autoimmune-nature Sjogren's syndrome. It's with me all the time, even on my best days. It differs from normal fatigue in that you don't have to do anything to deserve it. It may vary from day to day but is always there. There appears to be a correlation between this kind of fatigue and sed rate (ESR). When one goes up, so does the other. All of the following are superimposed on this basic fatigue.

2. Rebound fatigue. If I push myself too far, ignore the cues my body is sending me to stop and rest, my body will fight back. When I do more than I should, the result is an immobilizing fatigue. It comes on after the fact, i.e. I do something one day and feel it the next.

3. Sudden fatigue. This 'crumple and fold' phenomenon makes me resemble a piece of laundry. It comes on suddenly, and I have to stop whatever I'm doing and just sit down (as soon as I can). It can happen anywhere, at any time. It is the kind of fatigue that makes me shut off the computer in mid-sentence. It is visible to those who are observant and know what signs to look for, even if I make gargantuan efforts to disguise the fact that it is happening.

4. Weather-related fatigue. Not everyone has this particular talent, but I can tell that the barometric pressure is dropping while the sky remains blue and cloudless. I feel a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. Likewise, I know that a weather front is moving away while torrents of water are falling from the sky. I feel a lightening in my body and begin to have more energy. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.

5. Molten lead phenomenon. This fatigue is present when I open my eyes in the morning and know that it is going to be a particularly bad day. It feels as if someone has poured molten lead in my head and on all my limbs while I slept. There is an increase in muscle and joint pain, and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and sometimes helped by heat and massage.

6. Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement. My body is tired but my mind wants to keep going and can't let my body rest.

7. Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be either an increase in disease activity or a low-grade infection. If the latter, it is non-specific and either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away.

8. Fatigue related to other physical causes, such as thyroid problems or anemia. This kind of fatigue makes you feel that you are climbing a steep hill when you are walking on level ground. It resolves once the underlying organic condition is diagnosed and treated.

9. Fatigue that impairs concentration precludes thought, makes me too tired to talk, think or read. Fatigue that robs me of memory and encloses me in a fog of cotton wool so thick I can't find my way out until the fog miraculously lifts.

10. Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Stress, anxiety and depression all disrupt sleep.

11. Fatigue that comes from not sleeping well. Some people with Sjogren's have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjogren's affect sleep: too dry, too much pain, too many trips to the bathroom, need for water, need to put in eye ointment, or the need to move restless legs.

It's difficult to explain the unnatural intensity of this fatigue to someone whose only experience has been with what is normal. We're not talking about the same stuff. "Is it depression?" a health care professional who didn't know much about Sjogren's asked me recently. I tensed. Was he saying it was all in my head? Fatigue associated with depression can be as overwhelming as the fatigue associated with Sjogren's, but the two are not identical. I thought he was trying to understand. I was describing something outside his frame of reference.

When you describe Sjogren's fatigue to someone who has never experienced it, you are asking him or her to think outside the box. You want them to understand an experience that is common to those who have Sjogren's and many other autoimmune diseases but uncommon otherwise. It's always difficult to encounter expressions of disbelief, but I tried to see it as an opportunity to educate. "No," I said, "think of it as a never-ending flu that varies in intensity but never goes away." He grimaced.

Sjogren's Syndrome Awareness: Every Effort Counts

With April being designated as Sjogren's Syndrome Awareness month, I've been watching to see what other bloggers and health activists out there have been doing to put our disease in the spotlight of public attention. There's been lots of activity: The Sjogren's Syndrome Foundation has been making daily posts on their facebook page; Venus Williams has agreed this month to become an awareness ambassador for SSF, and then of course there's our Creativity Challenge here on Reasonably Well.

A reader recently sent this question to me; it appears that she has been frustrated at the lack of response to her efforts to raise awareness and fundraise for Sjogren's research:


I have a question about Sjogren's Awareness month, I wondered if you could query your followers.
First I set up a fundraising page, last summer, on FirstGiving.com, for donations to go directly to the Sjogren's Foundation.  I emailed it to friends, family, and former co-workers (I had been out of work, and had just gotten on Social Security Disability).  I made the first donation to get it started, then my friend made a donation.  That was it.
I put out another small donation under anonymous to try to spur something....  still nothing.  How disheartening.
Now for this April, I revised my page, sent out emails, and now on Facebook, info on April, 30 Days to Imagine campaign, blah, blah....
One more friend made a donation. Sorry for the rant, my whole point was I wondered if any of your other readers might be able to shed some light on what they've done for Sjogren's Awareness month, if anything, what's worked, what hasn't worked, or if it's just not worth alienating friends and family over something like this?......It's very sad and depressing to me that no one seems to care, other than my 2 friends.  I am so thankful I have them! - J.


First of all, I want to congratulate this sjoggie on her dedication and hard work to fight for our cause: Awareness. Research. Early Diagnosis. Effective Care!

I can hear her frustration and disappointment in her letter when she felt as though she did not get the response that she was looking for; especially since she was not looking for financial contributions for her personally but for a non-profit organization that promotes research.

J: Please know that WE know. We care. We appreciate your efforts! And who knows? Even though the response wasn't what you had anticipated, it did initiate some kind of awareness and dialogue. You may have planted a small seed of awareness in others that may take root at some point in the future. It is through the efforts of patients like J. and the rest of us that progress can and will be made over time.

Have you any experiences with April Sjogren's Awareness month that you'd like to share?

A Fixation With Floating

The sign is still there. I'm still wondering who drinks reclaimed toilet water?

Do y'all remember last year when I was feeling the need to do some serious floating-around-the-community-pool-and-pretending-to-swim exercise? And then I switched swim clubs? And then my dumb stupid subacute cutaneous lupus decided to flare and I was covered in red blotchy things? And then a sign went up in the new pool's locker room that said NOBODY IN THE POOL WITH RASHES and I got all huffy and quit?

Well. The lupus rash is gone.....shhhh......don't let it know that WE know....and I find myself wanting to bob around in a large body of water again. (I've also realized that I should have just taken my note from my doctors over to the pool staff and just talked to them about it all). 

What is it about water? Specifically, the feeling of being suspended in water? I love it. Just love it. Sure, I make the token swishes and kicks with the arms and feet, but that's not what motivates me to actually find and put a swimming suit on this plus size body of mine. Which has to be a seriously strong motivation, if you know what I mean.

For whatever reason, I'm feeling as though I have to float. Not that I WANT to, or would LIKE to, or might ENJOY it; but that I absolutely must get into some water. I feel a sense of renewal while I'm floating in water that I can't seem to find anywhere else. After I towel off from a swim, I feel squeaky clean inside and out. Tired -- yes, perhaps even perspiring with the exertion of putting my bra back on -- but filled with a strange combination of calm and refreshment. 

So yesterday I just couldn't resist the need for a real pool soaking and drove myself over to the community center -- the one with the pool that I was NOT thrown out of -- and signed up again. I have my brand new spiff ID badge and cool athletic looking lanyard, now all I need to do is to find all those things that I had put together in a swim bag before: the thing to lock my locker, my shampoo,  my water shoes, and....oh, right. My swimming suit. Bleah. 

Getting my swim bag together may seriously be all of the exercise that I can manage today, since it will probably require lots of trips up and down the stairs and a significant amount of energy-sapping rummaging. But make no mistake -- I'll be bobbing, and SOON. Oooo. I see that they are offering a new aqua yoga class that is listed as a beginner class. Hmm. 

I wonder what my buddies, the Senior Water Aerobics Class  gals are up to? 

I Want To Come Along, Too!

Adorable fainting goat image found here. Read on to see why. 

I had the most enjoyable lunch yesterday with my dear friend Bev. I've known Bev since the first day that we started construction on our house seventeen years ago when she scooted over as soon as she saw me standing on the sidewalk with my camera. (Of course). I wish I would have snapped a picture of her that day -- or better yet, asked a construction worker to take a photo of the two of us together.

She introduced herself as my new next-door neighbor and we were buddies instantly. What a rare thing. I wish she still lived next door......but luckily when she and her husband sold their home and moved, it was only a few miles further away, so we still are very close; although the days of running between each other's houses for morning coffee gabfests are long gone. Sigh.

Bev chose to move to a different home because she and her husband decided to buy a home that would allow them to be caregivers for Bev's mom, who has a long-term illness. As this woman progresses through the stages of dementia, Bev and her family are there with her every minute of every day. Needless to say, being a caregiver in a situation such as this is challenging, but I'm constantly amazed at the resources that my friend manages to find within herself to deal with the stress and uncertainty that accompanies this twenty four hour per day job.

Bev is blessed with a husband and family that are not only helpful to her mother; but also are a strong and loving source of support for her as the primary caregiver. As someone who has worked with patients with dementia/Alzheimer's, I know what a valuable thing this is. But I think that Bev's amazing sense of humor -- one of the first attributes about her that I appreciated -- has been one of her strongest lifelines through this journey which actually has only really seriously begun.

Here's an example.

Several months ago, I had been encouraging Bev to take some serious time for herself. Have someone else stay with Mom, I urged her. Just get out and about and do whatever you want!

It didn't take long before she realized that this was good advice, and she began to plan regular outings for herself even if they were simple things as taking time to grocery shop alone, or having a mani/pedi. Our friendship continued but as the needs of her mother became more consuming, I saw much less of my friend, although we still spent lots of time on the phone together. But it also didn't take long for Bev's mom to sense that something had changed in their routine, and she told Bev that she would really prefer to join her.

Which, as those who deal with Alzheimer's knows, is a very common thing: that the patient develops a strong dependency for one caregiver in particular and is reluctant to let that person out of their sight.

One day as Bev and I sat together over a Starbucks, she was lamenting the fact that it was becoming more difficult for her to leave the house without some pretty extravagant excuses that, even though another family member would be staying with her, didn't allow for Mom to tag along.

I nodded, sympathetically.

But then Bev grinned. "I'm so glad that I have to take care of YOU, too, girl."

What?

"Oh, yes. Every week you need something or other. Gosh. DID YOU KNOW that my friend Julia has to have someone to go with her to all of her doctor appointments? And that she needs to sit with her for all of her infusions? And that sometimes she just needs to get out of the house but can't drive herself?"

Um...Oh, righto! I chuckled. I was a bit slow on the uptake.

"Oh, yes. Julia and I do all sorts of things. Constantly." She winked.

Girlfriend! Brilliant! Mom knows who I am and is vaguely aware that I have had some medical issues.

So. What sorts of things have WE been doing, Bev? I laughed. I was delighted. What a great plan.

"Well. There was this one time when you said that you just couldn't stand one more minute in the house and that I had to take you to a casino."

REALLY?

"Oh, yes. And you know that it takes at least an hour and a half to drive down there....and wouldn't you know it you started winning and I had such a time getting you to come home! That one got me a almost a whole day of errands!"

Ah.

"You have to get infusions ALL OF THE TIME. And you're really not good at grocery shopping much these days, either."

Right. Which is pretty close to the truth, if you consider the kind of stuff that is making it's way home to my refrigerator and pantry these days.

"Oh, and this one is great --" She chuckled. "Then there was the time that you wanted to go looking to buy a miniature goat. One of the kind that faints when they're startled. We drove all over the state that day!"

I DID? Did I get one?!? I think those goats are amazing, actually....

"Oh, no. Sorry. John called us and told you to get home immediately because he was sure that we were going to buy a little one and throw it in the car with us."

By this time we were guffawing. Good thing there were lots of people in the coffee shop making a racket because we were getting pretty boisterous.

"Oh, and get this..." Bev managed as she dabbed tears of laugher, "Mom is beginning to worry about you!"

I'm sure she has every reason to be concerned.

"Oh, my yes. What with your gambling, and your constant doctor appointments, and running around looking for really unsuitable livestock, golly. She really thinks that you just need to stay home more!"

Girl. This sounds like so much fun. Can I come along sometime when you take JULIA out for the day?

By this time we had slid down almost completely out of our comfy coffee-shop plush chairs as we doubled over giggling.

Ahhh.

No wonder Bev's mom always gives me a solicitous hug when I drop by to see her. I'd give a million bucks to know what she's thinking.........

Woo hoo! I can't wait to hear all about the adventures JULIA and BEV have next!

Gaining or Maintaining Weight in Sjogren's Syndrome

What's that? You thought I should have actually been STANDING on the scale while I took this picture? You silly person, you. 

I spend a great deal of time here on Reasonably Well wah wah wah-ing about my excess weight, but for many other sjoggies, the opposite problem -- unhealthy weight loss -- is just as difficult. Recently I received a letter from a reader that was very concerned about her dramatic weight loss after onset of her autoimmune disease due to gastro-intestinal issues, oral tissues and teeth problems, and food allergies.

Certainly maintaining a healthy body weight on either side of the spectrum is important for everyone, but for those of us with chronic life-long health problems, it's a vital issue. Our bodies desperately need the best nutrients and energy sources that we can provide for it, and when one's gastrointestinal tract isn't cooperating, has food allergies, and problems with the mechanics of eating in general as a result of dry mouth and inadequate teeth, well......my goodness. What a difficult problem this poses.

I thought about what resources might be most useful to this reader, and it occurred to me that gaining weight/maintaining weight is an issue that appears in other diseases. I found these tips from the NIH Nutrition in Cancer Care site. Obviously, this reader's problem does not stem from cancer, but the inability to obtain good nutrition may be similar:

• Eat small high-protein and high-calorie meals every 1-2 hours instead of three large meals. The following are high-calorie, high-protein food choices:
• Cheese and crackers.
• Muffins.
• Puddings.
• Nutritional supplements.
• Milkshakes.
• Yogurt.
• Ice cream.
• Powdered milk added to foods such as pudding, milkshakes, or any recipe using milk.
• Finger foods (handy for snacking) such as deviled eggs, deviled ham on crackers, or cream cheese or peanut butter on crackers or celery.
• Chocolate.
• Add extra calories and protein to food by using butter, skim milk powder, honey, or brown sugar.
• Drink liquid supplements (special drinks that have nutrients), soups, milk, juices, shakes, and smoothies, if eating solid food is a problem.
• Eat breakfasts that have one third of the calories and protein needed for the day.
• Eat snacks that have plenty of calories and protein.
• Eat foods that smell good. Strong odors can be avoided in the following ways:
• Use boiling bags or microwave steaming bags.
• Cook outdoors on the grill.
• Use a kitchen fan when cooking.
• Order take-out food.
• Try new foods and new recipes, flavorings, spices, and foods with a different texture or thickness. Food likes and dislikes may change from day to day.
• Plan menus ahead of time and get help preparing meals.
• Make and store small amounts of favorite foods so they are ready to eat when hungry.
• See the NCI Web site for Eating Hints: Before, During, and After Cancer Treatment, which has recipes such as Lactose-Free Double Chocolate Pudding, Banana Milkshake, and Fruit and Cream. For a free copy of this booklet, call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

This site had additional recommendations for patients suffering from dry mouth:

• Keep water handy at all times to moisten the mouth.
• Eat moist foods with extra sauces, gravies, butter, or margarine.
• Eat foods and drinks that are very sweet or tart (to increase saliva).
• Eat ice chips or frozen desserts (such as frozen grapes and ice pops).
• Drink fruit nectar instead of juice.
• Suck on hard candy or chew gum.
• Use a straw to drink liquids.
• Clean teeth (including dentures) and rinse mouth at least four times a day (after eating and at bedtime). Don't use mouth rinses that contain alcohol.

The Sjogren's Syndrome Foundation Fact Sheet entitled Simple Solutions for Treating Dry Mouth also offers these suggestions:

• Ask your family doctor to discontinue or provide substitutes for all medications that cause dry mouth.
• Eat smaller, more frequent meals to stimulate saliva flow.
• Increase your intake of liquids (e.g. water, diet soda) during the day. Small sips work best.
• Minimize time in air-conditioned environments such as offices, supermarkets, airplanes, etc.
• Use a humidifier at bedtime (target humidity 40-50%) during the fall and winter months when the air is dry to increase nighttime moisture and decrease discomfort.
• Stop cigarette, cigar and pipe smoking to lessen dryness and your risk for other health problems.
• Chew sugar-free gum or suck on hard diabetic or sugar-free candies, fruit pits or lemon rinds to activate reflexes that will increase saliva. Look for products containing xylitol, a sweetner that may help prevent dental decay.
• Try artificial salivas. Use 2-3 squirts in the mouth every hour while awake and at nighttime as needed. Do not spit out any preparation that is safe to swallow to help it last longer.
• Avoid mouthwashes, fluoride rinses or products containing alcohol or witch hazel that can aggravate oral dryness or burning.
• Apply vitamin E oil (use liquid or punch hole in capsules) or moisturing gels to dry or sore parts of the mouth or tongue. Use 2-3x/day after meals, at bedtime, when talking for long periods, exercising, or any other time your mouth needs long-lasting relief.

I mentioned that the reader may need to have repeated appointments with a nutritionist to help her solve this most important issue of obtaining adequate calories and nutrients for her body at this time.

I also thought that by turning closer attention to good oral care, that some of the discomfort she was experiencing in the actual process of eating may be diminished, and referred her to this list of oral care products as recommended by an oral hygienist. Developing a good relationship with a great dentist would be an important tool for this patient, as well.

I know that several members of our Reasonably Well community also struggle with finding foods that are well tolerated and provide good nutrition to maintain an adequate body weight. Suggestions? Ideas? Support?

Share them here. And thanks.

I'm Not Ready

Yep. It's pretty foggy here in Julia's brain...

I am certain that y'all are breathlessly waiting to see who wins the Reasonably Well Creativity Challenge....

And I'm equally certain that y'all also realize that the cutoff date for submissions was supposed to be Monday,  on April 22nd.

But....guys. My brain is SO NOT WORKING right now. There's a zillion things upon which I suppose I could blame this sad state of affairs, but I don't even have the brain cells to effectively communicate what they are.

So. I'm going to give myself everyone another week to submit their concept art of something that represents Sjogren's syndrome. Which means....um....that date would be....ahhhh......April 29th. Yeah. That's it.

The finalists will be announced at some point after the 29th, and then the WINNER will be announced on May (LUCKY) thirteenth, 2013.

Let's review, shall we?

• Julia's brain is mush
• She doesn't anticipate it becoming less mushy by Monday.
• So we're changing the submission/winning dates of the Creativity Challenge to:
• Submit by April 29th, 2013 by end of day.
• WINNER announced May 13th, 2013. 

Whew. That was hard. See y'all tomorrow...Zzzzzzzzz.....

Sjogren's Related Meibomian Gland Dysfunction and What You Can Do About it

Image found here. 

One of my favorite features about the Sjogren's Syndrome Foundation newsletter The Moisture Seekers is their "The Questions You Asked and the Answers You Need" column.

The April 2013 issue included this question: I've heard that cleaning your eyelids is important. Why is that? And how do you go about cleaning your eyelids and how often do you suggest it be repeated?

Answer: The eyelid margin is a very important contributor to protection of the surface of the eye and stability of the tear film. Lid margin problems occur in two forms that can aggravate dry eye: anterior and posterior.
     In patients with Sjogren's not only is there the problem of reduced production of liquid tears, but there is often a problem with obstruction of the glands in the eyelid that secrete lipid onto the tear film to prevent evaporation of the tears. These glands are called meibomian glands and your eye care practitioner may alert you to "meibomian gland dysfunction," which is the obstruction of the openings of the glands at the edge of the eyelid margin just behind the base of the eyelashes. Such obstruction leads to evaporative dry eye which can aggravate the dry eye situation. Symptoms of the eyelid margin problem, meibomian gland dysfunction, can be irritation with redness of the eyelid margin and frequently difficulty reading or working at a computer.
     The first step in managing the lid margin is lid hygiene and massage. Precede the massage with application of warm compresses to the eyelid for at least minute using a warm washcloth. Some patients will use a bag of rice heated in the microwave oven, but it is important not to use too much heat such that it turns the skin red or, worse yet, burns the skin of the eyelid or face. The heat melts the lipid secretion so that the massage can express the secretion. The massage is done with the flat pulpy area of the index finger starting at the base of the nose and moving towards the ear. Four or five such swipes to compress the eyelid is usually all that is needed and the pressure should not be so great as to cause discomfort in the eyeball. I recommend to my patients to do the hot compress/massage method twice a day for a week then once a day thereafter. It is important to remember that you are trying to press on the eyelid to squeeze the glands in order to express the secretions.
     If the hot compress/massage method does not completely resolve the plugging problem, it is possible to use topical azithromycin solution, (Azasite) once daily for two to four weeks to clear the problem. Some patients require the use of oral medications to treat the problem. Doxycycline by mouth once or twice daily for two months works well but some patients do not tolerate the doxycycline due to upset stomach. Oral omega - 3 essential fatty acids also have been reported to improve the meibomian gland secretion but usually require at least 3000 mg (three pills) per day to be effective.
     There is a recently developed technique using an instrument called the Lipiflow system that provides continuously controlled application of heat to the eyelids. It is approved by the FDA for in-office use in treatment of the meibomain gland dysfunction, but there have not yet been controlled clinical trials to confirm it's effectiveness. At present it is an expensive procedure that may or may not be covered by insurance, but if other treatments fail to control the problem, this could be an alternative treatment.
     It is important to remember that there are two types of lid margin problems. The meibomian gland dysfunction (the glands in the posterior eyelid) is the most common problem, but inflammation of the glands at the base of the eyelashes (anterior location in the eyelid)  can cause irritation and crusting on the eyelashes. This problem responds best to eyelid wipes, such as Eye-Scrub pads. The daily use of the eyelid wipes helps to clear the crusts but if inflammation and irritation persist, then topically applied antibiotics or antibiotic/steroid combination therapy may be needed. Remember that the eyelid wipes do not control the posterior meibomian gland problem but only the anterior problem.
     Since the occurrence of the eyelid margin problems can be so frequent, it is a good idea to practice good eyelid hygiene to prevent as well as treat the meibomian gland dysfunction or lid margin disease.

-- Gary N. Foulks, MD

You can read this and other great answers to important sjoggie questions by joining the Sjogren's Syndrome Foundation. All members receive copies of the Moisture Seeker Newsletter both in the mail and are also available in the members-only section online.

There's the Beef

Prednisone does such weird things to me.

And, as I have wah wah wah-ed a zillion times before, the prednisone weirdness usually involves food. Today's pred adventure was a bit unusual, though, in that it did not involve sugar or flour or wheat.

Hm. Wonder why.

So at two days post rituximab, I'm up and doing stuff, especially since my pred is temporarily bumped up for a week. But I am still living within some pretty tight energy restraints, so I have to choose my activities carefully. Well, I should choose my activities wisely, but of course this means that I don't. Washing my hair? Doing some laundry? Nah. Once I become obsessed with some kind of prednisone induced project, the focus is always food. Sigh.

My food obsession today involves a three pound beef roast that has been sitting in my refrigerator for the past two days, just begging to be cooked in some delightfully unusual way. This is very, very weird for me. Although I enjoy being a carnivore, I really can't say that I have ever craved a roast before. Ever.

So I spent every last ounce -- inch -- how DO you measure energy, anyway? Kilocalorie? -- combing the internet for a recipe and preparing this thing. At this writing, I have no idea how it will all taste, but so far, it's smelling pretty darned good.

The recipe involved slicing, dicing, searing, braising, browning, and mincing. I also needed to learn how to and actually make a bouquet garni, which did turn out pretty danged awesome, if I say so myself.

But even as I was patting myself on the back for actually putting this concoction into the oven, I also realized that absolutely nothing else was going to be accomplished, since by the time I closed the oven door, I was bathed in perspiration and wobbly as heck.

So. I'm camped out on the couch for the remainder of the day, but I'll be eating BEEF for dinner, by golly. And at this point, nothing else matters.

Wonder what tomorrow's obsession will be?

Here's the recipe for what I'm thinking should be called "Steroid Steak". Or something beefy like that. I make no claims about the deliciousness of the recipe, but I'm optimistic.

Found on Magnolia Days, here.

Beef and Onions Braised in Beer

3 pounds lean beef roast
2 to 3 tablespoons bacon fat or cooking oil
1 1/2 pound (6 cups) sliced onions
Salt and pepper
4 garlic cloves, pressed or finely minced
1 cup beef stock (not broth)
2  to 3 cups Pilsner style beer
2 tablespoons brown sugar
6 fresh parsley sprigs
1 bay leaf
1 fresh thyme sprig
1 1/2 tablespoons cornstarch
2 tablespoons white wine vinegar
Chopped fresh parsley for garnish

Preheat the oven to 325 degrees F. Cut the beef into slices about 2- to 4- inches long, 1 -inch wide, and 1/2 inch thick. Lay beef strips on paper towels and cover with another layer of paper towels to dry them.

In a large skillet or saute pan over medium-high heat, add a thin layer of bacon fat or oil and heat until almost smoking. Brown the beef slices quickly and in batches. Do not crowd the pan. Set browned beef aside in a bowl.

Reduce heat to medium and add the sliced onions. Add more fat or oil if needed. Cook the onions for 10 minutes, stirring frequently. Remove onions from the heat and season with salt and pepper. Add the garlic and stir to combine.

In a 9- or 10- inch dutch oven or heavy pot, place 1/2 of the beef in an even layer and season lightly with salt and pepper. Cover the beef with 1/2 the onions. Repeat beef and onion layers. Pour any accumulated juices from the beef into the pot.

In the browning skillet over medium heat, at the stock. Heat the stock and scrape the pan to get up any browned bits on the bottom of the skillet. Pour the heated stock over the beef. Add enough beer to barely cover the beef. Stir in the brown sugar.

Wrap the parsley, bay leaf, and thyme in cheesecloth. Tie it with cooking string (makes an herb bouquet, or bouquet garni). Bury the herb bouquet in the beef.

Over medium-high heat, bring the contents of the dutch oven to a simmer. Cover and place it in the oven. Cook it in the oven for 2 1/2 hours.

Remove and discard the herb bouquet. Use a strainer over a large bowl to drain the liquid out of the dutch oven. Return the beef and onions to the dutch oven. Pour the liquid into saucepan and skim off the fat. Heat the liquid over medium heat.

In a small bowl, stir together the cornstarch and vinegar. Slowly pour it into the liquid, whisking constantly. Bring the liquid to a simmer. Turn the heat to medium low or low and simmer for 3 to 4 minutes to slightly thicken the liquid. Pour the liquid into the dutch oven.

Serve immediately with buttered noodles or potatoes. Garnish with fresh parsley if desired.

SjoTrue, SjoSandy!

Sandy Burkett, author of the Sjodry and Parched blog, recently published a post that discussed her impression of the most recent Sjogren's Syndrome Foundation National Patient Conference in Bethesda, Maryland on April 12-13. The title of her post is "Validation in Sjoggie Nation!" GREAT title, by the way.. It's a good read. Head over and check it out.

I was especially interested since I've had a Moisture Seekers newsletter sitting on my desk for a month now. I've been wistfully looking at the registration form on the back cover for the SSF National Patient Conference. I knew that even if I had wanted to take the time and expense to attend, that it wouldn't be possible for me this year since it fell smack dab at the end of my rituximab cycle, meaning that I simply wouldn't have had the energy to travel that far and once arrived, would have been so fatigue loopy that I wouldn't have remembered a thing. I would have been right at the mousie snout on my rituximab energy graph.

The snout is NOT where I like to be. 

I had the opportunity to attend one SSF National Patient Conference several years ago in Phoenix, AZ, and I'm so glad that I did.......for some of the same reasons that Sandy describes:

What I did not expect was the feeling that I left the conference with. Yes, I enjoyed the conference and I really enjoyed meeting other Sjoggies there. But something far more meaningful happened to me there. After 53 years of battling an invisible illness and all of it’s many systemic manifestations in my body (that I had no name for until recently), I received validation. VALIDATION that I have not been and am not crazy, neurotic or worthy of a DSM V mental health diagnosis. 

Exactly!

And here I have felt as if I was the only one on this sick, lonely road.

How true. When I left the conference in Phoenix, I felt as though I had found several hundred long-lost relatives. And that we could all hang around for the weekend chugging from our water bottles, dropping our eyes, and talking about our other relative -- that crazy old Aunty Sjogren's.

There's always one eccentric in every family. Lucky us to have HER. Sigh....

I'm looking forward to seeing when and where the next national conference takes place. I'm thinking that I'll be there.

Piece of (Cheese) Cake

It's nice that the rituximab infusions are beginning to feel routine. Yesterday, I hopped into the bed in the infusion center and was halfway asleep even before the IV pump was started. I think it's a conditioned response -- the pre-rituximab IV benadryl zonks me out in seconds. Actually I was zonked even before it was administered.

My nurse for this go-around was also the charge nurse for the unit. Here's how the mousey treat handoff went:

Me: I made CHEESE cakes for you guys, get it? CHEESE? Lemon drop cheesecakes and Oreo ones.

Kathy: Ha! That's great! Ooooo. Yummy!

(The staff has quickly abandoned making token protests about not having to bring them stuff. Now they expectantly meet me at the door, wondering what goodies I brought in.)

She scurried out of the room, mini cheesecakes in hand. Later she informed me that she hid them in the back of the staff refrigerator.

Me: Hid them? Why?

Kathy: Because I'm having a staff meeting here tomorrow and I'm going to give them out as treats then. Win!

HEE.  Good thing I also thought to bring along the leftover decorations: lemon drops and mini-oreos. She didn't hide those. On the few occasions that I was awake in the hours that followed, I smiled whenever I saw staff walking past my door munching cookies or sucking on a candy.

Where was I going with this.....oh, righto. I was saying how that it's nice to feel as though I'm in a comfortable routine. I hope that my response to this drug continues to be as predictable.

I'll keep y'all posted.

I Never Thought I'd Tag a Post With the Words Tragedy AND Rituximab AND Food

Yesterday, I was fussing with baking my staff treats for today's rituximab infusion. I was making mini Oreo cheesecakes, (Cheese? Mice? Get it? Get it? Of course you do) and was certain that I had either baked them too long, or not long enough; was wondering if I should have put more chocolate chips in the batter; and was mentally debating the merits of Cool Whip vs. real whipped cream for the dab on the top which will hold an artfully placed mini-Oreo. Or should I go with crushed Oreos? Or maybe chocolate jimmy's, hmmm....?  I was actually sweating, I was thinking so hard.

All seemingly very important things. Then my phone dinged with a news update from a local television channel: Bombings reported at Boston Marathon. One click on the television remote confirmed their news flash. I watched the shocking, gut wrenching sights and sounds of innocent victims fleeing the scene with horror.

As I sank down onto the couch in disbelief, once again I was struck with how fragile our lives are. These people were attending what should have been an amazing uplifting event. In  a few minutes, the event morphed from an inspirational display of human cooperation and healthy competition into chaos and horrific injury.

Why is it that I am seemingly always baking something when these terrible events occur?

Actually, why should these terrible events occur AT ALL?

Sjogren's Syndrome and Stress

Take a look at a question a reader recently sent to me in an email, wanting to know if lifestyle stressors can impact the frequency of flares and other symptoms of her Sjogren's. Like most sjoggies, this reader is feeling overwhelmed with the challenges of work and family and life combined with her autoimmune disease:

"......I've been totally exhausted. Coincidence or connection? I'm doing everything I can do reduce stress in my life but it just keeps finding me!
 ........people have said I need to manage my stress better. I think I do a fairly good job. There are days that I feel like I just want to crawl in a hole and stay there but I keep going. One of my friends said if all this happened to her she'd be in the fetal position. The stress is just never ending. 
How do I keep the stresses in my life -- that I can't get rid of -- from getting me down? Not just emotionally but physically. Any advice?"

Well. Tough question, isn't it? How to manage stress, especially the type that she highlights: the stresses in my life -- that I can't get rid of. Really stubborn ones like financial insecurities, family dynamics, job and working issues. There's no question that stress can increase flare frequency and significantly decrease quality of life.

I sincerely wish that I had an authentic solution to the reader's problems. My initial response to her was the usual stuff: "Stress causes elevated hormones throughout your body, which in turn sap you of vital energy. Even if you can't change the problems, your most important task is to take every chance you can to rest to replenish your energy stores."

Stress and the inevitable resulting fatigue are a universal problem for anyone facing a chronic debilitating illness. But how to address this?

Other bloggers, such as Jenny Pettit over at UII, comments on her fatigue issues frequently, and it seems that her discussion of stress resulting in fatigue is once again well stated. I referred to one of her blog posts just a few days ago. In it Ms. Pettit makes an interesting metaphor between taking out a loan to cover your financial obligations and spending more energy stores than you have : Can you "finance" extra energy? It seems that the answer is no.

"....But in the end, the only way to pay back energy is with energy.  You can't trade money for it.  If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while........But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.
Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest.  Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued.  We are not the USA; we do not have a national debt and cannot print money.  Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means." 

What good practical ideas: thinking ahead and storing up energy, doing things for others so that one doesn't feel guilty or asking favors in return, and taking good physical care of our bodies with adequate rest and good nutrition.

But in addition to Jenny's excellent suggestions, there is an important addition I can make to her list. I would encourage the reader to spend a bit of her precious energy in cultivating relationships with those who are facing similar challenges. Find a support group, if possible. Go online and contact others via reputable disease organizations such as the Sjogren's Syndrome Foundation, or the AARDA. Read other patient blogs. (Ahem). Attend conferences or seminars.

Reach out for support, information, and coping skills from any sources you can. Stash those goodies away and use them in any means that is helpful to you.

So -- I'm asking y'all how YOU manage the stresses in your life. Share your wealth of experience and tricks of the trade with this reader, and all of us.

Smile on Sunday

Awww. I love Simon's Cat. Here's his latest feline adventure:

Some Questions are Easier Than Others

I want to express my gratitude to several who have sent along some EXCELLENT questions and blog post ideas! I've got them safely stored in my things-that-I-will-certainly-write-about-soon list. But today? Ah. Well.....today I just can't seem to give these topics the serious consideration that they deserve. But I promise: They will be addressed soon.

In the meantime, my brain is pondering other less challenging questions. Such as:

1. Where has artichoke/olive tamponade been for my whole entire life?! Why have I not been notified that this tangy, delectable, gluten-free product is in existence? I love this stuff.

2. What silly person would want to throw this wonderful old rhododendron away? Mr. "Sure-you-can-have-it-I'm-just-going-to-chop-it-up-anyway"? All it needs is some acid for the soil, and the application of John's brilliant pruning methods. Er, I mean the ones which don't include a chainsaw. 

3. When will it finally occur to me to post some pictures of Terese and Greg's daughters who are the same ages and are great buddies of my girlies? Hm? Because pictures of two cutie patootie sisters such as this, who not only conceptualized this photo setting, but also had the trust in each other to carry it out, are pretty dang cool:

4. And finally. Why bother taxing my brain today when Jennifer Pettit over at Understanding Invisible Illnesses has already written a thoughtful and insightful post recently addressing her take on a busy life that doesn't stop just because of autoimmune fatigue:

Tell me if this scenario sounds familiar to you:

It's morning (or lunchtime or afternoon or the middle of the night during an insomnia spree or basically any time of day), and you want nothing more than to lie in bed a while longer.  Not because you're comfortable - in fact, you may be in pain.  But because getting up requires moving your body and that requires energy and you don't have any.

But you do it; you get up.  You have to.  You have a child to get off to school, a friend to meet, a boss waiting for a presentation, and you have to get up.  Furthermore, after you slog your way through a morning routine and are able to leave the house, you have to smile, pay attention, join in conversation, solve problems, and navigate other interactions in this world of ours which all require - you got it - energy.  How are you supposed to do something with nothing?

What's that?  A resounding chorus of "YES, THAT'S MY LIFE"?  Thought so.  Continue reading HERE. 

Take time to read her post, it's seriously excellent. 

Well, then. Question and answer session over for the day. Bonus points for those that noticed my use of that good journalistic practice of including the Who? What? Where? When? and Why? words. 

It's All On My Head

Aieee.

Y'all really for some more classic Julia whining?

So it's really, really hard to keep my left hand dry. Which is what I was instructed to do. And keep the splint on continually. Which is what I was instructed to do.

And, for the past week, I have.

But dang. Do you know how hard it is to try to wash my hair this way? Can't be done. Just can't.

I asked John to wash my hair, then reconsidered after I saw the gleam in his eye.

"Sure, Babe. I'll give you a shampoo AND style. Just like mine." And made a grab for the electric shaver that he uses every morning on his entire head. Well, except for the eyebrows......

Yeah. I'll pass on that one, honey.....

Sjogren's Syndrome Awareness Creativity Challenge

I certainly won't be sketching anything for a bit. Which, considering my level of talent, is probably a very good thing.

Yoo hoo, all you creative sjoggies out there....

Remember this? The Reasonably Well's Creativity Challenge?

While I have received several stupendous submissions, I know that there are zillions more out there floating around in your noggins. So let the inspiration flow and send me your ideas before end of day on April 22nd.

1. Email your image, drawing, concept of an image, sketch, or model that you think universally represents sjoggies everywhere. Use of a word or alphabet letters will disqualify your entry.
2. You may submit as many entries as you like.
3. You may email your submissions to: juliaschulia(at)gmail(dot)com.
4. All submissions must be received by April 22nd, 2013, midnight. 
5. Judging panel includes: John, Terese, Greg, and D#1. 
6. If judging panel is unable to make decision, I -- yours truly -- will cast the deciding vote. 
7. Finalists will be notified via a post on Reasonably Well and their mailing addresses will be requested. 
8. Winner will be announced by May 1st, 2013.

I can't wait to see what y'all create!

Time For Another Dance

On occasion, I feel the need to review some of my older posts and re-publish them. Sometimes I do this because I really like those old writing efforts; sometimes because I am just lazy. I think today's post is due to both reasons. This was originally written on April 2, 2012 and is entitled The Meanwhile Dance:

Every now and then I pick up one of my favorite books that address living with a chronic illness and just page through it; I notice where the smudges, coffee stains, and earmarked pages are because.......those are the goodie pages. The best pages of the book. The pages that I return to time and time again to renew my understanding or lift my spirits.

Today, the book in my hand is a well-worn copy of A Body Out of Balance -- Understanding and Treating Sjogren's Syndrome by Ruth Fremes, M.A. and Nancy Carterton, M.D., FACR.

There's a wealth of useful and insightful information in this book. But when I lift the cover, the book always falls open to a grubby page that contains only these words:

I get up.
I walk....
I fall down.
Meanwhile, I keep dancing.

--- Hillel

Ahhh. Yes.

Twelve words. So succinct but so true: A reminder to me that my life does indeed contain challenges, but even while falling down the dancing still continues.

I first read this poem several years ago while in the midst of a monster flare of autoimmune activity. As is typical flare mode for me, I was in bed grumpily reading any and everything that I could find. A Body Out of Balance happened to be sitting on my bedside table, unopened and unread. So I blew the dust off the cover and began to read. I impatiently flipped through the introduction and forward of the book, looking for chapter One. Yes, yes....title page.....acknowledgements......publication junk.....dedication......table of contents.....::Good grief, just get to the good stuff already!::.....and then there was this almost blank page with those few words. As I read and absorbed their meaning, I smiled for the first time that day.

I let the book drop onto my lap and wondered how I could dance while still in a flare. What a concept! What a great way to change my lousy perspective! Even though I had read and repeated other platitudes that are meant to encourage, this one struck me as being so simple but so authentic. It truly inspired me to look for joy in every day.

All these years later, I've discovered several ways to dance in the face of my disability. Luckily for John and everyone else who sees me daily, my dances these days aren't literal ones.

Hoo boy. Wouldn't be pretty.

No, my dances have to take other forms. I feel as though I am dancing when I grab my camera and click away: jitterbugging?

Friends and family gather into one big happy mob of chatter and food and fun: swing dancing?

The comfortable and easy camaraderie found in exchanges with other sjoggies: waltzing?

And then there's writing this blog. I wonder to what kind of dancing that could be compared. Let's see. What other forms are there? Hm. Foxtrot? Nah. Too formulaic. My writing is anything but structured. Um. Maybe the twist? Pfft. Too dated. That's SO yesterday.

Ok. I've got it. My blog dances as though it's the dance that someone always does at a big old-fashioned wedding reception, or after they've had a few adult beverages, or preferably both: The one where the person dancing just does whatever they feel like. They fling their arms around, they follow the beat......or not.....they dance with a partner.....or not.....or they dance like my brother-in-law, who invents his own dances like the Alligator: you throw yourself down belly-first on the ground and try to mimic alligator jaw action with your arms. Or the Surfer: similar to the Alligator except you coerce some small person to stand on your back with arms outstretched.

Yep. That's how this blog dances. I never know what I will feel like saying when my fingers hit the computer keyboard.

C'mon everyone! Let's do the Alligator! Or, wait. How about the Julia's Still Sitting Around In Her Jammies and Drinking Coffee at Noon dance?

Oh, yeah. That's one of my favorites. Start the music.

Rib Tickling Good

Initially after our sad Maggie incident and my injury, my friends, y'all included, were a great source of consolation. And Terese and Greg were sympathetic and supportive, until Missy Terese discovered my newest goober-inducing acquisition.

I've never been anything other than a klutz even at my best. But having my hand in this splint makes matters exponentially worse, especially since it's on my dominant left hand.

We all went out for dinner the other night, and being the ideal best friend EVAR, (pffffttttt), Terese seized the opportunity to document what appeared to be a potential goober of enormous proportions, seeing as we had chosen to meet at a rib restaurant. Because photodocumentation of Julia goobers is one of her most enjoyable hobbies. Sad, but true. And I can't say as I blame her. I've produced some real goodies. Could YOU eat barbecued ribs dripping with sauce goober-free if YOUR dominant hand was wrapped and splinted?

I suppose I should have squirted the BBQ sauce directly on my food, instead of into my mouth......

Meanwhile, Greg was having fun with his dinner's completely chomped clean rib bones by doing an amazingly accurate impression of the Lion King character Pumba.

Hm. I am just now realizing that I didn't get a copy of THAT picture.

Aren't you glad that you weren't trying to eat a peaceful, dignified meal -- in the same restaurant as us? It probably was a good thing that the wait staff didn't seat anyone else near our boisterous table.

Ahh. Good friends know when silliness is the very best medicine of all.

Yay for Adrenaline

I think I've earned one of these delightful adrenaline molecule pendants, don't you? 

Thanks, everyone, for your kindness and sympathy to us after the loss of Maggie. It means a great deal to me.

Lulu is missing Mags, as we all are. But I feel especially sorry for her since of course she doesn't understand what happened. Poor Lulu has been carefully scouting out the yard and every inch of the house looking for her buddy. She's getting extra snuggles and treats.

Meanwhile, I've been mulling over the past day's events and find myself surprised about one thing: that even though I was completely rituximab-induced tuckered out, when I needed to deal with three very agitated dogs, had searing pain in my hand, and was alone in the house; I found the energy to corral and muzzle Maggie, deal with Lulu and Skippy, bandage my hand, clean up the blood everywhere, and drive myself in to get medical attention. I was shaking and sweating profusely, but I somehow mustered up focus and strength that I didn't realize that I had.

Isn't the "fight or flight" response a powerful thing? Here's what happened. Thank goodness.

Maggie

This is such a hard post to write....

We had to put our dear Maggie doggie down yesterday. She has had neurological problems that escalated to aggression. She was having a hard time identifying us -- even me -- as someone that she knew and trusted, resulting in her biting me as I was holding her.

I muzzled her and isolated her from the other dogs as she was very agitated and disoriented, then drove myself into urgent care to receive care for my hand. Damage was considerable: four deep puncture wounds to the top of my hand and a larger laceration across my ring finger and knuckle. I was expecting to receive a stitch or two and a tetanus booster, but the advice from the doctor made sense: we would have to leave the wounds dressed but unstitched since I am immunocompromised due to the rituximab and prednisone. He prescribed antibiotics, dressed my wounds and splinted my hand, gave me sterile replacement bandages, and strict instructions to monitor my hand closely for infection.

I drove home in a daze, trying to decide how best to deal with Maggie. We have known for the past two years that she was having issues, and have spent literally thousands of dollars and endless hours with veterinarians.....and reluctantly realized with the advice and counseling from our breeder and vet that Maggie's quality of life was not good, and that she posed a real safety risk to us and our family and friends. And, we knew that we simply could not put our loved ones, especially my precious little great nephews, in any circumstance that may result in their injury.

So John held her and comforted her as she was put to sleep.

I'll miss you, sweet girl.

Rituximab: Wash. Rinse. Repeat.

Image found here, where you can also find a recipe to make your very own laundry detergent. 

I loved this from fellow mousie recipient Julie regarding the two-infusion cycle of rituximab administration:

Take care, Julia... I know what you mean. Its the mousy "wash, rinse and repeat cycle", with the 2, 2 weeks apart Rituxan regime. Hopefully, at the end, you will come out feeling brand new, and springtime, bouncy fresh, like the laundry that has been through those cycles! (I know, I am weird, aren't I, with how I compare things? Maybe I am watching too many shampoo, and/or laundry detergent commercials on TV).

Dang, girl. What a great analogy: Julia goes through the rituximab laundry cycle and emerges feeling brand new, and springtime, bouncy fresh!

What could be better?

Hm. Wonder what fragrance I'll be after I'm finally back in the clean clothes laundry basket?

On Track

Well.

So here I am at post-rituximab-infusion day two. I'm feeling just about exactly as I had expected, which is strangely reassuring. I feel tired; a bit of a headache; but able to do basic stuff like bathe and fold a basket of laundry and saute a couple of chicken breasts for dinner.

But that's my limit.

This is reassuring because I know what comes next: that things will gradually improve over the next couple of weeks, and after I receive the second infusion in the two-part cycle, I'll feel about the same as I do today. And that FINALLY after the second infusion, I will begin to recover my energy reserves. I hope.

Heading to bed for yet another nap. As planned. As expected.

Thank goodness. See y'all tomorrow.

Say Cheese

Thanks to Hedda, who reminded me that I didn't post about this go-around of mouse themed infusion staff treats!

My friend Susan gave me a delightful little set of pewter mouse cheese forks awhile back, which gave me the inspiration to make up a cheese and cracker gift basket for the infusion nurses. They loved it!

Another Arrival of the Mousie Train

Awww. Thanks to my D#1 for creating this for me! It's perfect.

Yesterday's rituximab infusion went smoothly. Welcome, mousies! Glad you're here.

See y'all tomorrow. Zzzzzzz.....

It's More Than a Piece of Fabric

Image found here. 

I hope you enjoy the beautiful imagery of this from The Cranky Native as much as I did:

"....I love the part of the holiday when we put the table cloth on the table. It is almost like touching the past for me. In the act of lifting the cloth into the air several times until you reach the ultimate perfect circumference, all the edges and ends even and smoothing out wrinkles. Womankind has that in common. I have been on the other end of that cloth with generations of women. I see their faces in this simple task and it reminds me of my humble roots and I thank God for giving me the peace I find in table cloths."

Ahhh. What a lovely thought. Now I know what that special feeling is as I smooth the wrinkles from my mother's tablecloth as I place it on MY table....

Thank you.

Almost Ready for the Next Rituximab

Mmm. Chili for supper. 

Since tomorrow is a rituximab infusion day, today was spent doing a few things to prepare. It's nice to have a general idea of what to expect after these infusions. Previously, although I trusted my doctor and staff, I just really didn't know how to plan the days and weeks afterwards.

Now I can guess how things will go -- I'll come home sleepy. Probably with a weirdo taste in my mouth but otherwise OK. I'll pour myself into bed around suppertime and sleep for about two days.

Seriously.

Even with 60 mg of prednisone on board. I find that really interesting.

I will wake up on the third day and will slowly gather my wits and energy....

At least that's how I'm predicting things will go. So I've got fresh sheets on the bed, a few day's worth of meals made ahead, the house tidied up (Um, well, at least tidier than it WAS) and a zillion really old stupid movies recorded.

I think I'm set. I'll keep y'all posted.

It's All Good

What a fun day. Wish I could take credit for the cute bunny cake but my friend Naomi made it. 

See y'all tomorrow!