Podcast

Yeah. Kind of like this one. Image found on wikipedia. 

Well. Yesterday's interview on Cross Link radio was actually quite enjoyable. You can listen to the podcast of this program entitled "The Sjogren's Experience" here.

All of the participants had interesting information and experiences to share. My interview takes place approximately an hour and fifteen minutes into the program.

I sound like a frog. A frog that says, "Um...." A LOT.

Because of Sjogren's dryness in my throat and vocal cords, of course! That's my excuse and I'm sticking to it......

See y'all tomorrow.

I'd better not be hearing your voices, gentlemen.

I don't think we have cell phone coverage up in the Bearded Dog Pub, John and Greg..

Friday night, John and I were having dinner with the usual suspects.

Meaning Terese and Greg, of course.

Somehow the dinner table conversation came around to my upcoming interview today. For about thirty seconds, the discussion was predictable and logical. And then, right on schedule, the course of our discourse took a nosedive into silly-ville when Greg asked with a dangerous gleam in his eye, "Hey. Can ANYONE call in to this program?"

Hoo boy. I could see where this was going.

Um. Um. Um....

"Why, YES Greg! It's a LIVE interview!" said John while smiling broadly at Greg.

Guys....

"We could call in together!" said Greg. "From the Bearded Dog Pub!"

This would not be good. Boys. This would NOT BE A GOOD IDEA.

"We could ask some really interesting questions."

"Definitely!"

*guffaw*

"Yeah! We could call in and ask stuff like....."

They pondered for a second. And came up with these beauties. Hm. Come to think of it, most of these questions reference John and Greg's previous shenanigans:

"Hey. What time is lunch?
Can we change the subject to hydrangea pruning? Greg -- hand me a chainsaw. No not that one, my chainsaw on a stick!
And....How did that dart get THERE? Never seen anything like it.."

*snort*
 *bahahahaha!*

I'm thinking that in spite of their mischievous intentions, they'll refrain from chiming in on the Sjogren's conversation. They'd better behave themselves.

Or it wouldn't be pretty. Understand, you two?

The Sjogren's Experience Interview

I'm looking forward to participating in this Sunday's Cross Talk Radio online program entitled The Sjogren's Experience. It's hosted by Shirley Gutkowski and will be online, found here, at 1 pm Central time on Sunday, March 30th. (I have to keep reminding myself that this is actually 11 am Pacific time.) It will be available as a podcast after the live broadcast. I am only one of several Sjogren's syndrome patients being interviewed, and as always when participating in a Sjogren's-themed event, I think that I will find hearing other patients' experiences extremely interesting.

If you would like to call in to speak to Shirley during the interview, the number to call is (646) 595-2938. And completely disregard the dopey picture of me that comes up on the screen. I can't believe that's the one I chose to send in. I was sitting on the floor of our rec room AKA the Bearded Dog Pub when it was taken. Dang. It's probably too late to submit Terese's picture of me photoshopped into a Batman body, which would have been a far superior choice....ah, well.

As I mentioned in an earlier post, one of the topics that I anticipate discussing with Shirley is the importance of having and being a mentor when living with chronic illness. I would love to be able to share not only my experiences with incredible people who have been a mentor to me, but also yours as well.

So: What is your definition of healthy "sick" behavior? Who has modeled healthy "sick" behaviors for you? How do you model this behavior for others? Please -- share with me, so that I can share with others.

Thanks.

A Blessing in Disguise?

Ever since the purse-snatching incident a few days ago, every time I close my eyes and remember seeing my purse under the arm of that woman darting out of the grocery store, I get grumpy.

Harumph!

But I have slowly and grudgingly come to realize that this gal must have been in dire straits to resort to theft, especially after I received a call from the police officer that assisted me on that day. He told me that she was arrested and he had taken time to talk things over with her.

She will have to be booked with a felony offense based on the amount of money and credit cards that were in my purse. He told me that she had a drug addiction and was desperate for another fix when she saw me and my purse in the store; and that she now was dealing with withdrawal symptoms. But he also told me that she had agreed to participate in a drug rehabilitation program and even though will have to serve some jail time, will also be able to get the help that she needs.

She asked the officer to send her apologies to me and wanted me to know that the only reason she chose to try to steal from me was that I was standing near the door.

I hope she can turn this really poor choice into something -- anything -- positive. Although a felony on her record is nothing to be happy about, perhaps the opportunity to change her life and leave drugs behind is.

I wish her the best.

Kudos to Christine: A Race Well Run

Photo and permission provided by Christine Molloy. She's the awesome lady on the left with her awesome running partner on the right. 

Have you ever thought with despair that having a Sjogren's diagnosis will prevent you from achieving  fitness goals?

I have. More than once. And to be honest, over the past few years I have been far too complacent and....well, just plain lazy about exercising because it's hard. It is exponentially more difficult to exercise since my diagnosis than it's been at any other time in my life.

So I just didn't. Much. A huge mistake because the longer my muscles go without regular exercise that pushes my ability, the weaker they become. Which is why over the past year I have been swimming with some regularity. I haven't been back to the pool since my infusion because I'm just a bit concerned about exposing myself to germy people there and I really miss it. If my next set of labs checking my white blood cell count and the differential (which separates and counts each of the specific types of white blood cells) are within expected limits, I am heading back to the water. And I can't wait.

I have to admit that it's disheartening for me when I think back to those days when I was capable of getting a four mile walk in before taking the kids to daycare and then working a full shift at the dialysis unit, because that Julia body was a completely different creature than the Julia body that I have now. But reading inspirational stories from other sjoggies about their experiences in fitness helps me to keep a positive attitude and fosters a small glimmer of hope that I, too, can help my body to be healthier and more fit despite my autoimmune disease.

Enter Christine Molloy, Sjogren's syndrome patient and author of Tales from the Dry Side. Christine set a goal for herself: to run/walk a 10K race. She trained faithfully and even though she had never been a runner before, found in herself abilities that she didn't know she possessed:

Running makes me feel powerful because I am doing what I was told I would never do. It is me defying the odds and refusing to let my illness or my own mind beat me. It does not matter if I am running a twenty minute mile or a thirteen minute mile, me and my body are beating the odds. It may last another week. It may last the rest of my life. But regardless of the outcome of my running life, or even this race Saturday, I have conquered....
.....I, a person with a life-altering chronic illness, had accomplished something that I never before thought possible, even when I was healthier.

You can see additional photos and read more about Christine's victorious 10K race here. You go, girl!

I Need a Cape and Tights

Of course I had to share my purse-snatching escapade and VICTORY from yesterday with anyone who would listen. Including Terese. Who promptly sent me this:

Oh, yeah. BatJulia and RobinNaomi for sure. Crimefighters extrordinaire!

HA!

A Woman's Gotta Do What a Woman's Gotta Do..

As I was getting dressed yesterday morning, I was thinking about how mundane my life seemed to be lately. The only thing on my calendar that day was to go to the lab and have some blood drawn for a follow up CBC.

Woo! I thought. That's pathetic.

My friend Naomi offered to go with me and after we left the clinic, we decided to do a little shopping. Just to liven up the day a bit. We stopped at a grocery store, I grabbed a cart from inside the store entrance and plopped my purse into it.

That's when things became distinctly less mundane.

As Naomi and I were examining bags full of those little mandarin oranges that are so popular these days, I had my cart directly in front of me. Just as I turned away from the fruit and back toward the cart, I saw a young woman running out of the store. With my purse tucked under her arm.

I had just begun to perspire with the effort of walking to the store from the parking lot, but my fatigue completely evaporated as I began to yell, "HEY! THAT'S MY PURSE!!" and I sprinted after her. I caught up to her as she was just opening her car door and yanked my purse from her arms. "WHAT'S THE MATTER WITH YOU?!!"

I'm pretty vocal when I'm hacked off.

She was young and fit appearing, but I grabbed her firmly by her upper arm. "SOMEBODY CALL THE POLICE!!" By then I was shouting at the top of my lungs.

By now a small crowd had gathered. A dopey bespectacled older man said firmly, "Ladies. Surely we can come to some kind of compromise here!" and I looked at him with disbelief. As I did, the little snot squirmed out of my grasp, slammed her car door and squealed out of the parking lot.

Good grief. I HAD her!, I thought in frustration. If that stupid guy hadn't taken my attention away from her, I could have held on! I swung around to give Mr. Dodo Head a piece of my mind, but he had disappeared as well.

In the meantime, the police had been called and several people had noted the car's license plate number. And suddenly.....all my energy was gone. I began shaking and the reality of what had just happened struck me: I had outrun a thieving young gal. And had just about wrestled her into submission. Me. Old, disabled, chubby, ME.

Someone ran and got a folding chair and slid it under me. I'm glad they did because right about then my knees began to buckle. The police officer that appeared held out his hand. "Ma'am. I heard what you did. I want to shake your hand!"

What? What did I do?

"Well, according to the rules as a police officer I should be telling you that you shouldn't try to chase after people like that. But to be honest, I'm glad that you did."

He then went on to do all the usual stuff that police officers do after an incident like this, with a smile on his face every time he looked at me. "She got it back. She got her purse back!" I heard him chuckle to the store employees.

Darned right I did. I thought. Everyone around me was asking me if I was all right, or if I had been injured in any way so I showed them my chipped fingernail. And just after a perfectly good manicure, too! Tsk.

It never occurred to me that I would be in danger which I guess was kind of naive but in all actuality, I think that the bigger potential injuries would have occurred if I would have thought to sit on that little brat before the police came. SHE would have been the one suffering any damages, I thought. She probably had some bruises on her upper arm as it was because I was hanging on to her for dear life before my attention was directed elsewhere. Dumb stupid "compromise" guy. What could he have been thinking?! That perhaps I should have handed over one of my credit cards and half of my cash??

After the hubbub was over and Naomi had deposited me back in my home, I collapsed onto the couch, totally spent.

So this morning.......I'm thinking that maybe mundane is a good thing. A very, very good thing. I will never plop my purse into a shopping cart ever again.

Inertia

Lulu would rather be a body in motion. 

A body at rest tends to stay at rest... Yeah. True, that.

I find myself thinking about Newton's laws of motion frequently these days. Not because I'm a physics and math type of person; but because my body really, really, wants to stay at rest right now.

I can't put the blame for my inertia totally on Sjogren's, even though I would really like to say that. I think that my age, my weight, and a prednisone taper are definitely contributing to my tendency to keep my butt at rest on my couch. And yes, autoimmune fatigue isn't helping things any, either.

It just seems to me that my body de-conditions itself so quickly. If I have a flare, or am recovering from a rituximab infusion, or recouping from an energy crash that requires a couple days of rest, then I have to really push myself to regain my previous abilities. Small amounts of regular exercise followed by a small amount of rest seems to be the best strategy for me.

So right now I'm pushing myself. It's bad enough that I have to cajole my muscles into moving, but my Bratty Inner Child Julia only makes matters worse because when she's not interested in experiencing "pain for gain", she can be beyond stubborn. So I have had to resort to talking sternly to myself hopefully with no one around to witness these strange conversations. They went kind of like this over the past few days:

Me: OK. I've had my twenty minute nap. Time to get up and do something.

BICJ: *opens one eye to look at the clock* No. We need another twenty minutes. Or an hour. Or...

Me: Girl. This is only going to get harder.

BICJ: Pfffft. *rolls over and pulls plushy zebra striped blankie over head*

I love my zebra blankie. 

Me: One foot. Just stick one foot on the floor, girl.

BICJ: If I do, what will we get?

Me: What will we get? We'll get UP and be vertical, silly.

BICJ: I'm not moving one inch unless there's a treat involved.

Me: Treats are one contributing factor to us having our big butt planted on this couch. No treats. 

BICJ: But... but... we have SJOGREN'S SYNDROME! 

Me: I know. 

BICJ: And...and...we just had our second infusion only a week ago!

Me: I know.

BICJ: And...and....WAH! WAH WAH WAH!

Me: Sigh. How about this? If we get up, and do one thing -- like cleaning up the dishes -- THEN we'll have a treat. 

BICJ: Better be a good one. *brightens* Hey. How about we drive over to.. 

Me: See? We're actually standing up. That wasn't so bad, now was it?

BICJ: So about that treat...

Me: Dishes first. Then we'll make a smoothie from organic frozen mangos, pineapple, and a little bit of milk. MMMM! 

It seems as though there should be some huge calorie expenditure from talking myself into doing something, don't you think? All of the REAL work takes place even before I put one foot on the ground. 

Think I'll Take a Nap

Well, guys, I'm hanging in there.

The weekend brought wonderful blue skies. John had numerous projects in the back yard and I couldn't resist tagging along.....without my hat. Oops. But what fun to dig in the dirt and see new green arborvitae shrubs plunked into the yard. Dinner out with Godson and his family; then sitting around a bonfire at Greg and Terese's house.

Ahh.

Fun, fun, stuff. But I'm pooped. See ya'll tomorrow.

Sunday Smile

Ahh. I'm so glad that it's officially springtime:

An Excellent Question

I love hanging out in my little corner reading letters from y'all. 

A reader sent this question via email the other day, and it was one often asked frequently of me by others: Can you tell me if there is any hope for this drug (rituximab) for Sjogrens? Here's an improved version what I told her:

Regarding the use of rituximab: This drug has been used for many years in the treatment of cancers such as chronic lymphocytic leukemia and non-Hodgkins lymphoma. It has also been used often in patients with rheumatoid arthritis. It works to interrupt the autoimmune response by targeting a very specific subset of the white blood cells (CD20 B Lymphocyte). This process is called B cell depletion therapy. You can read more about this type of therapy here.

Rituximab has been used in the treatment of Sjogren's syndrome for several years. It is not considered an experimental use of this drug, BUT neither is it a first-line drug. Read this found here:

...However, while we await the results of larger trials, RTX should only be considered as a rescue therapy in patients who exhibit involvements refractory to standard treatment. (Ramos-Casals and Brito-Zeron, 2007).

When my rheumotologist prescribed it for me, he did so based on a few things: my disease was demonstrably active at the time, I had tried and failed numerous other DMARD medications, and I was willing to take it despite some risks of significant side effects. It's not a first line drug since by altering our white blood cells and is made with mouse proteins that have been partially humanized, has potential to cause serious side effects such as infusion reactions and increased susceptibility to infections.

There has been several good studies proving it's efficacy. Here's this study's conclusion:

This paper reports the first prospective, multi-center, follow-up study performed in a large cohort of active pSS patients, with recent disease onset carried out for a period of 120 weeks, to assess safety and efficacy of RTX compared with DMARD treatment, and correlating the clinical response to the immune-histological and molecular patterns before and after treatments. Our study shows that B-cell depleting therapy by RTX offers a promising and safe treatment for these patients, significantly ameliorating clinical features, when compared with other therapies, and restoring B-cell disturbance, by reducing immune infiltrate and lymphoid organization in target tissues. In fact, this therapy is able to interfere with the formation of tertiary lymphoid tissue, not only depleting B cells but also tuning the delicate equilibrium between cells, molecules and receptors, partially affecting the pro-B-cell inflammatory milieu that is typical of the inflamed glands. (Bolding mine.)

Other smaller studies, while acknowledging it's benefit for some patients, concluded that rituximab carries too much expense and risk to justify treatment for temporary relief of fatigue. My rheumatologist told me that this conclusion "is a matter of opinion", and feels that ritux may be of some benefit to me. (Yesssss, Dr. Young Guy!)

It is also a very expensive drug not only for cost of the drug itself, but the fact that it must be administered IV and under fairly close observation by medical personnel. I am very fortunate that my insurance coverage pays for this, but I have heard from other people around the country that some insurances do not.

Rituximab is helpful for some of us, me included, but not for others. Why this happens is not understood, probably because there is still so much that is not known about Sjogren's syndrome and autoimmune diseases in general.

So. Rituximab: A complex drug in the treatment of a complex disease. I hope that this explains a bit more about this therapy for all those that have asked.

Guess Who?

Since I am the Doofus Queen around here, I love to see others do things that I could have done and have been harassed for.

In my circle of friends, any time someone goobers food or beverage down the front of his/her shirt, this is referred to as as performing a "Julia". Need I say more? I'm not saying here that I don't deserve this...um...honor, because in all honesty, I do. But it's just nice to have an opportunity to harass others in return. You know, in the interest of fair play and all.

So I was delighted to see this picture on an incoming text message this morning:

Hoo ha!

However, since this person is a very good friend and I wouldn't dream of revealing her identity, she will remain anonymous. But I'll give you one teensy hint: Her name begins with Ter and ends with ese.

Your secret is safe with me, buddy ol' pal.

Cross Link Radio: The Sjogren's Experience

I've been invited to be part of a podcast entitled The Sjogren's Experience. It is hosted by Cross Link Radio's Shirley Gutkowski and will air March 30th, 2014 at 1:00 pm Central time. You can listen in live here. Shirley will interview me and three other women also dealing with Sjogren's syndrome. This should be an interesting experience and I'm looking forward to participating and hearing the other guests.

I was asked to discuss something that I thought was of importance in our disease, and I told Shirley that I would have to mull that one over for awhile since there's so MANY "somethings" that are vitally important relative to Sjogren's syndrome.

I was thinking about that and as I did, I thought about my friend Marilyn. I think about her often when I am dealing with chronic illness. I'm only realizing now, many years since her death, that she was not only a dear friend, but was also modeling behaviors that can only be described as How To Be Sick And Still Have A Life. Behaviors that I would attempt to use in my yet-to-occur walk with chronic illness.

Marilyn and I met when our sons went to high school together. We would chat as we sat in the school stadium watching the kids' football games, and one day she invited me to join her and a few friends for coffee. We all met on a Monday morning at a local coffee shop and over steaming mugs of freshly brewed coffee we found ourselves laughing and sharing easily with each other. And that's how the Mocha Monday coffee group was born seventeen years ago. Although several of us have come and gone, and we no longer meet every Monday, the Mocha Girls live on for which I am so grateful. Good friends are such good medicine.

I quickly learned that Marilyn was fighting a decade long battle with vicious metastatic breast cancer diagnosed when her son was just starting school. She told me that her goal was to live a quality life as long as she could in the hopes that she could see him graduate from high school twelve years later -- and she did -- plus several years to spare. With grace, and a wicked sense of humor, and above all: style. At the time we met, I had no idea that Marilyn was teaching me a vitally important lesson as she discussed her disease frankly and without self-pity. And remained active in our lives even though sometimes her body wasn't cooperating. When she was able to join us for mochas, she answered all of our questions without hesitation but then moved on to actively engage herself in those things that were happening with us and to sincerely let us know how much each of us meant to her.

Somehow through all of her recurrent tumors, chemo, radiation, and surgeries, she kept an amazing balance in her focus of attention: she was educated and engaged in her health issues, but didn't let cancer impede her relationships with her family and her friends. Even when it was clear that her life was quickly approaching it's end, Marilyn thought of us. After she had been told that chemo and radiation were not achieving their goals, she planned a special Mocha Girls coffee party. We met at her home near Valentine's day, and Marilyn surprised us with a Valentine's day party. Each of us were given lovely fluffy slippers to put on, we were invited to sit down at a fabulously decorated table, she poured each of us coffee or tea, and offered us lovely little cakes and treats that she had made herself. We were served on beautiful glass dessert plates that were hand painted by Marilyn and were told that they were our gifts.

Without dramatics, she told us that this was her Valentine gift to each of us so that we would remember her and realize that each of us were a precious gift to her. She was telling us good bye with unbelievable composure and sincerity.

How do you do that? How do you handle such a horrible set of circumstances as yours and still smile, and love, and live?, I thought.

It became clear to me over the years as I was diagnosed with Sjogren's syndrome and my life began to change dramatically, that I had been given a precious gift in Marilyn. Not only was she a friend, but she was a powerful mentor.

Yes, a mentor. A how-to-be-sick-without-driving-myself-and-others-bonkers mentor. A yes-I-have-a-crummy-disease-but-life-goes-on mentor.

So after thinking about my upcoming interview and topic, and thinking about my dear friend, I have decided that my brief time on-air will be spent discussing the importance of mentoring in a chronic illness. It was and continues to be so important for me to learn and adopt attitudes and behaviors that put my disease into perspective, and by doing so to increase the quality of my life.

I realize that my health challenges don't begin to approach the severity of Marilyn's, and that my disease most likely will not be the cause of my death, but it still stinks. And since I plan on living my life for a great many more years, it's important to me that I preserve all those things that make my life.....well, my life. Mine. Marilyn set the bar high but she also gave me valuable tools.

Have you ever wondered, "How do I do this? How do I be sick and still have a life?" Do you mentor others dealing with chronic illness? Have you benefitted from the mentoring of others?

Share. Tune in on Sunday March 30th 1:00 pm Central, call in and share your experiences and stories.

Edited 3/23/14 ** Time of broadcast is 1:00 pm Central **

A Quest

Image found on Food Network

I'm happy to report that yesterday's infusion went off without a hitch. IV IN, premeds given, rituximab in, IV OUT. Home. Boom.

Of course this all took place over the course of several hours, during which I slept most of the time. I think that I have developed a conditioned response to having an IV placed: once it's in, regardless of the medication going through it, I zonk out completely. So I snored away with infusion pump clicking and the automatic blood pressure monitor doing it's thing, and John off on a mission. 

He takes my infusion days off from work so we can spend the day together. The fact that he's with me is probably one of the reasons that I feel as though I can just fall asleep. 

John always takes some time to leave the infusion center and go find some lunch after which he brings something back for me to nosh on. I usually just want something light like a cup of soup or a blob of refried beans and cheese, so he eats something in the restaurant first. I've come to realize that the places he chooses to eat are forming a distinct pattern -- they're all rib joints. 

I should have known what he was thinking as he casually mentioned awhile back that he had read an interesting review of the best places in Portland to eat barbecued ribs. It listed ten restaurants and he commented that he thought it would be fun to try them all. 

That's nice, honey. I replied. Not really paying much attention. 

Yesterday he returned from his lunch outing carrying my refried beans and a mango smoothie (mmmmmm food for the gods...) rubbing his belly contentedly and smelling decidedly like barbecue sauce and smoked meat. I asked him if he was working his way down the top ten barbecue rib list and his face lit up as he described that day's food and where this restaurant was on the list and blah blah blah blah... The man is now on a rib MISSION. Every infusion day. 

My nurse Pam was listening closely. I couldn't stop laughing as I thought of John with his cell phone list in hand, Google maps up, with RIBS as his destination. Pam chimed in with some serious observations and it became clear that she was a fellow rib connoisseur. She returned several times with addresses that she thought should be added to his list. Who knows? Next time he may even bring some back for the staff. 

That is, if there is a next infusion. The next few weeks will tell: will my neutrophils behave themselves and stick around in large numbers? Or will they vanish like before? Will I have a return of my mouse-shaped map of energy increase? 

Stay tuned. John's hoping there's many more opportunities to sample new ribs joints. Me too.

Second Dose

So I'm over at the infusion center today being a lady of leisure. I have been trying to avoid sweets and wheat since my last dose of rituximab, so the nurses at the center are going to get a vase full of blossoms from my camellia bush instead of goodies.

Even though the home made pralines treats last time were absolutely wonderful (thanks again, Naomi!) and much appreciated, I don't think the staff willl mind getting a bouquet of fresh flowers instead of candy.

I treated myself to a manicure and pedicure yesterday, and it was probably the best one that I've ever had. I walked in to a little spa that I hadn't visited before. I was the only client there and the manicurist spent almost three hours with me; in addition to the mani/pedi she massaged my legs, arms and hands. The shop was so quiet and she had soothing instrumental music playing in the background. Ahhhh. Nice.

Hope you had a great Saint Patrick's Day. See y'all tomorrow.

What Kind of Support Do You Need?

Christine Molloy, authoress of the blog Thoughts and Ramblings on Life, Love, and Health has penned yet another interesting post entitled Support Groups: Not-One-Size-Fits-All.

In it, she discusses her experiences with support groups of varying nature:

....However I was finding that the more time I spent in this support group, the more depressed I was becoming. And while I was struggling with many aspects of having a chronic illness, I was not depressed by any means when I started going to the group. There were multiple factors in this scenario that contributed to this, but the end result was that it wasn't the right environment for me. It did not feel like a nurturing, safe place where I could learn to live better with my illness.

Christine is right, I think. There's support groups. And then there's not-so-supportive groups. My one experience in this area was in a group that sought members that had chronic diseases and was not specific to Sjogren's. My reaction was similar to Christine's in that I came away from the meetings  feeling as though I was not only carrying the weight of my diagnosis, but crushed under the other members' burdens as well. The participants shared their challenges -- at length -- without pausing to take a breath to consider some solutions to their problems. As I was newly diagnosed, the experience seemed to paint a future with chronic disease as bleak, painful, and joyless. After four consecutive meetings after which I drove home in tears, I arrived at the same conclusion as Christine. This group was not providing what I needed most at the time: information, strategies, camaraderie, and above all: reassurance that life would still be meaningful and joyful in spite of my disease.

It's important to point out here that not all support groups are conducted in a similar manner; sjoggies Amy and Heidi enthusiastically participate in the Sjogren's Syndrome Foundation's Dallas, TX group, for example. The San Francisco bay area chapter is active and several members have let me know how much they appreciate this group. I am guessing that there are far more positive-oriented Sjogren's groups out there than not. Christine eventually found the support she was looking for in the Boston area:

My one saving grace in the support group department (besides the one-on-one interactions) is an in-person Sjögren's Syndrome Foundation support group in Boston. I think I have figured out the difference for me. The leader, who is a psychiatrist, keeps the group very structured. There is usually a topic and guest speaker. This keeps the session focused. There is free time to talk to other patients and once a year, one of the meetings is more interactive with various round table discussions but again, it is structured. While there is a bit of commiserating about this symptom or that, overall it is an opportunity to learn about our illness and different ways to manage it. Now for some people, this might not be the best type of support group for them, but for me, it works.

Head over to Ms. Molloy's blog to read the rest of this excellent post.

Check out this listing for Sjogren's Syndrome Foundation support groups in your area.

Share your support group stories. What are you looking for in a meeting? What works for you? What doesn't?

Post edited 2:10 pm 3/17/14

All Systems Go, Houston

I love that I can see my lab results online. 

I was pleased to hear on Friday that my follow-up rituximab infusion lab work was right on target: my "good" whites (neutrophils) were normal, and my "bad" whites (lymphocytes) were low. This is good news since the overall goal of B-cell depletion therapy using rituximab is to kill off a B lymphocyte with a specific receptor leaving the rest of my blood cells intact.

You can read more about these blood cells and lab work here.

Along with eating healthy fresh foods, getting adequate rest, moderate exercise, and avoiding obviously germy people, I'm also trying to be mindful of my goals for this medication; which are to create lab values exactly as were reported Friday in hopes that some positive thinking will do something, anything, to avoid a massive neutrophil exodus in the next few weeks.

The last time my neutros took a hike and the word went out in my family that I was missing some white blood cells, my kids procured a few for me. Awwwww.

Cutttttteeeee plushy and felted white blood cells. These kids think of the darndest things. 

Woo hoo! Two more whites ready in reserve. Not sure how they'd squeeze through capillaries, though...

I've realized that I'm a visual learner by and large, and slapping up this excellent chart that illustrates how blood cells are created inside me and from which cells they originate is a useful tool in aiding the direction of my mindfulness. Because if I'm hoping for something, I like to hope in specifics.

Anyone that has tried to make sense of a white blood cell count and differential lab result realizes that hematopoiesis (formation of blood components) is a very tricky process and results in not simply red blood cells and white blood cells, but dozens of specialized cells.  In the hopes that by repeated viewing I will eventually retain some of this information regarding my very busy bone marrow, I taped a printout of the chart in direct line of sight when I'm at my desk. So every time I look up from my computer, boom. There it is: Hematopoiesis in Humans.

With these lab results and given that I'm feeling Reasonably Well (sorry, couldn't resist), it appears that my second in the cycle of rituximab infusions will happen on Tuesday as planned. Yessssss.

Truth

Found on I'm Not Right In The Head

Jogging? I only WISH I could go jogging. Nah. But definitely true when I go shopping. Or do laundry. Or walking. Or just standing around......

Sigh.

Pseudo Summer

I know that Mother Nature is just teasing us a little over the last few days with warmer temperatures and blue skies. Here in the Pacific Northwest one can't count on the end of our winter rains until Memorial day at the earliest. But I'm willing to soak in all of the springtime weather I can as long as it lasts.

I couldn't resist hauling out my hammock chair and putting it up on it's hook yesterday. Ahhhhhh.

Life is so good when nestled into my hammock chair.

What's Your Assessment?

Mmmmmmmm. Yummy Taco Bell pintos and cheese image found here

It's been a bit over a week since my rituximab infusion cycle began, and many of you have asked for a post-infusion status update. I'd be happy to oblige since blabbing about myself is what I unfortunately do best...

Rituximab is given in a two infusion cycle. I received my first dose on March 4th and will receive my second on March 18th. The IV drug is accompanied by a burst and taper prednisone dose. The cycles can be repeated as often as every six months, so if I have a good response, theoretically I could repeat the treatment somewhere in September/October.

How's it going, you ask? Hm. Pretty well, I'd guess. It's too early to assess my authentic energy level response since prednisone confuses the issue, but we'll be tapering off the prednisone soon. I tolerated the infusion itself well with the expected few days of altered taste/smell and feeling overall more tired, after which I returned to my usual expected reaction to this drug.

I think that he most accurate way to communicate my ongoing response may be to re-visit an old school style of documentation in medicine: SOAP notes. This method is probably needed since it requires the documenter to actually justify his or her assessment, and having had my required dose of prednisone AND a cup of coffee this morning making me a bit loopy.....well, any extra organization of thoughts is a good idea.

But.

I was thinking that I may not be the best person to provide an impartial observation of my status. So sling your stethoscopes around your necks and pull on the scrub suits, people. Y'all going to play nurse today. Just imagine yourselves entering an exam room to greet John and me as we report for a follow up rituximab exam. I would expect that documentation similar to this would be the result:

• S (Subjective data most often recorded as patient quotes): "Whoooeeeeee!" Patient reports burst of energy following AM prednisone dose followed by afternoon "crash". "Zzzzzzzzzzzzzzzzzzzz." "Ooo. Where did all my spots go?" "My life would not be complete if I didn't buy a new iPhone case."
• O (Objective data): Venipuncture site healed without infection or bruising. Temperature, blood pressure, pulse, respiration within normal limits. Skin rash erythema diminished considerably. Appetite robust with decided tendencies to ingest high carbohydrate food items. Amazon online shopping account activity dramatically increased with corresponding credit card account amounts. Personal living space littered with multiple scraps of paper upon which are scribbled lengthy task lists of varying nature; none of which are marked as completed. Husband reports expenditures for vehicle gasoline elevated accompanied by significantly increased vehicle odometer readings; uncertain of daily vehicle destinations. Examination of vehicle reveals multiple bowl shaped disposable food containers labeled with the words, "Taco Bell". Husband perplexed by evidence of increased patient activity since upon arrival home from work he describes her activity levels as "sluggish". 
• A (Assessment): Physical response to rituximab and prednisone therapy within normal limits and progressing as expected. Potential for significant weight gain. Potential for significant financial impact as a result of hyper-reactive shopping activity. Potential for appearance of noxious odors in patient's personal space as a result of ingesting large amounts of legumes. 
• P (Plan):  Second rituximab infusion of cycle prescribed and scheduled per attending physician. Patient instructed on follow up labs, prednisone dose taper, and monitoring and reporting symptoms of infection. Patient advised of health benefits of substituting fresh organic fruits for fast food refried beans and cheese. Will attempt to convince patient to step on bathroom scale weekly and record weight. Will plan to increase reported weights by 10 - 20% in anticipation of patient error. Husband instructed to remove credit cards from patient possession during absence during day and to place air freshener products in strategic locations throughout the home. 

So there you have it. Job well done, Reasonably Well medical staff! Oh by the way, don't forget to turn in your time sheets by Friday. And there will be a mandatory inservice on biohazards in the workplace on Tuesday. Remember to submit requests for vacation hours to the staffing office one month prior to expected use of said vacation hours... and blah.....blah.......blah blah blah. What's that? You want to QUIT this job?

I don't blame you one bit.

Thank You For This: An Advocacy Victory!

I had no idea that the discontinuance of immunosuppressants in a required drug category under Medicare Part D formularies was in the works. I'm incredibly grateful to the SSF, the AARDA, and NCAPG for not only being aware of this important potential change; but also for being assertive in protecting options for care in autoimmune disease. Need another reason to consider supporting the Sjogren's Syndrome Foundation? Read this: 

The Sjögren’s Syndrome Foundation (SSF) is proud to be a member of the National Coalition of Autoimmune Patient Groups (NCAPG) and join with similar organizations to represent the voice of our members and all Sjögren’s patients.

This past Friday, the SSF stepped up to support the American Autoimmune Related Diseases Association (AARDA) and other coalitions that petitioned the Centers for Medicare & Medicaid Services (CMS) proposal to discontinue the inclusion of all immunosuppressants as a required drug category under Medicare Part D formularies.The SSF submitted its own comments as well to the CMS about the proposal.

Today we are happy to announce that the Administration will not finalize at this time ANY of the changes it had proposed to the Six Protected Classes policy in its Part D proposed rule issued in January of this year!

As a nonprofit organization representing the 4 million Americans who suffer from Sjögren’s, the second most common rheumatic/autoimmune disease, the SSF believes it is crucial that access to life-saving and life-altering care not to be impeded in any way.

Because Sjögren’s patients often present as complex cases, with no two patients being exactly alike and tend to have multiple autoimmune disorders that contribute to the complexity of management and treatment, patients and their physicians together need to be free to decide which therapies are best suited for each patient specifically. Though the SSF appreciated the fact that CMS wanted to improve quality and costs for patient care, we believe the best way to do so is to ensure critical access to care and let the protected class status remain for immunosuppressants in Medicare Part D.

The SSF wants to thank all of our members as your support allows us advocate on behalf of all patients! We are excited that our combined efforts paid off and millions of Medicare beneficiaries will continue to have greater health care options and access to their vital medications.

Click Here to view the Medicare Proposed Changes

Click Here to view a copy of the CMS Letter to Senator Kay Hagan on the Proposed Medicare Advantage and Part D Rule

Sometimes You Just Have to Avoid Stupid

I spend so much time wah wah wah-ing on Reasonably Well, y'all may have trouble remembering all of my reasons for whining. Today's belly-aching refers to issues that I've had with my feet since what seems like FOREVER. My complaining today is even more pathetic in nature because my feet feel just dandy these days. I just feel the need to gripe because of what I have to wear on my feet to make them happy.

I think I've spent a fortune on shoes over the last couple of years. And I've quit wearing many of them either because I've worn them out....

Or.

I choose not to wear them because they're just stupid looking. There's no other way to describe them. Take a gander at these beauties:

Guys. After my trip to the podiatrist, he informed me that these three models of shoes would comprise my entire footwear wardrobe until I gave in and had a bunion and hammer toe surgery.

I was appalled. The sneakers -- not so terrible. But these black and tan size 10 ½ monstrosities?? No.

Actually,  that would be HELL no.

But it appeared that I had little choice and the shoe guy that fitted me for them and made my custom insoles was stern."Now. Don't ever go barefoot. And wear one of these pairs of shoes and nothing else."

He looked me straight in the eye. "Deal?"

 I don't remember exactly what words I used to reply, but they basically were WAH. WAH WAH WAH! He calmly threw my old shoes into a box and laced up my new ones.

I was a whiney but obedient patient, though. Funny how discomfort is such a motivating thing. And, Podiatrist and Shoe Guy were right: my feet do feel a zillion times better when I wear these dumb stupid things around. But after clomping into church with them on for several months, I waited until I knew that Shoe Guy wouldn't be in his store, and made a covert visit. I chose a salesperson there that was a woman.

I figured that she would be totally on my side here. I pleaded with her to offer just one other style of shoe that would accommodate my custom inserts and wouldn't be really, really, bad for my feet. But most of all -- wouldn't look completely stupid.

She looked around the store surreptitiously, then motioned me to follow her to a display. "These are actually pretty close to what you need. They have a really deep and wide toe box and have removable insoles so that you can put your orthotic ones in there. But they really are more attractive than the ones your doctor prescribed. Want to try on a pair?"

I slipped them on. Ahhhhh. The heavens opened. Angelic choirs sang. A golden shaft of light descended from the clouds.

Alegria Paloma Mary Jane image found here. 

My feet were comfy. And while I realize that there's no shoe on the face of this earth that could make my huge feet appear dainty, while wearing these shoes my feet looked slightly less than totally stupid. Brilliant!

As she was ringing up my sale, the saleswoman leaned over the counter and quietly told me that I was NOT to divulge to my doctor that she recommended a shoe other than the ones he prescribed. She winked.

Mum's the word, I promised. And gave her arm an appreciative squeeze.

Sometimes men just don't appreciate the importance of not looking ridiculous.

I've worn these puppies almost every day since, and my feet still love them. How's that for a happy ending? I think it's time to get another pair. I'll have to sneak back into the store when Shoe Guy isn't there....

Woo hoo! Perhaps I can avoid foot surgery with these on my tootsies.

I'd Guess We're Good for Another Dozen Years or So....

Yesterday, as John was hanging off a too-tall ladder, he remarked that these days he thought he was in better shape than he was back when he was in his '40s. Since we're both in our mid 50's, I thought that was pretty impressive.

I wish I could say the same thing, but gee. It's good that one of us feels that way.

The incident that prompted his reflection on the state of his fitness was a project on this window in our foyer.

The problem wasn't the window, but the retractable window shade that's attached to it. About a dozen years ago -- seriously -- I decided that I simply couldn't survive in this house without a remote controlled window shade. The thought of loooong shade cords or even worse: a STICK control was unthinkable.

We really do need to be able to shade that window since it faces southwest; and the late afternoon and early evening sun can quickly heat up this house.  So we splurged and got the shade.. and it's been working for all those years on the same set of batteries. Wowsers.

We figured the batteries must have finally pooped out about two months ago, and yesterday for some inexplicable reason, John decided the time had come to plug some new ones in. I had tried to convince my son-in-law awhile back to climb up there since he loves doing that kind of stuff. I remember one Easter in particular seeing him atop one of our thirty to forty foot trees. My daughter had a conniption fit and ordered him down IMMEDIATELY. He said it reminded him of his happy childhood days spent climbing trees.

Perfect, I thought. S.I.L. is my man for the job. We didn't have time while they were here, so he promised that he would on their next visit.

But apparently his father in law beat him to the task. My job was to hold the ladder. Which is a good thing since there was no stinkin' way that I was about to even think of climbing 20 feet or so.

Lulu was a bit concerned about the project. 

John nimbly climbed up, popped out the old batteries, cleaned the window, and hopped down as if he were just taking a stroll in the back yard.

I told him he looked pretty good for an old guy, which is when he informed me that he had distinctly improved with age. He was pretty darned good when I met him, but I think I would agree with his self-assessment. For lots and lots of reasons. What a guy.

I Need One of These

Guys. Only three more weeks of this crazy prednisone-induced wackiness for me before I can taper my dose. I'm blaming my recent ditziness on the pred; that's my story and I'm sticking to it anyway...I know that I've wah-wah-wah-ed about my prednisone battles repeatedly, but I can't help myself. It's so strange to feel wired and tired simultaneously.

On a positive note, I am happy to report that SO FAR I've managed to keep myself from indulging the sugar/fat/wheat cravings by drinking unsweetened fruit smoothies. I make no promises as to how long this will last. It really helps that Terese gave up desserts for Lent, however. Once she decides to have pie or ice cream or both, I'm a goner. I'm pathetic that way.

Another nice development is the pred has started to diminish my lupus rash considerably. Which will come in very handy once I am cleared to go back to my aqua yoga class and not have large red splotches all over my back and chest and arms. I look weirdo enough in a swimming suit even without the rash. Blotches don't help matters.

I came across an item that may be of some use during the next few weeks. I think it may also come in handy when plain old garden variety brain fog sets in. An emergency inflatable brain!

Oooo. Ahhhh. You can buy your very own brain in a tin here.

Hm. One may not be enough considering my circumstances. I think I'll order a whole case.

Trouble With Twitter

When I set up my Blogger account and began writing Reasonably Well, I chose an option that automatically published links to my blog posts as tweets on Twitter. It appears that somehow this option was inactivated awhile back, so I want to apologize to my Twitter followers. I HAVE been posting daily, but should have double checked that these posts were also tweeted.

Oops.

Problem identified. Twitter auto publish re-activated.

My accomplishment for the day!

Planet Prednisone

I've almost forgotten what it feels like to take larger doses of prednisone. Whoooeeee.

It tends to make my mind race; make my body feel as though it could race; and then reality catches up with me after I've half started a zillion things. Yesterday an hour after slugging down my pred with a big ol' cup of coffee, I felt that delicious zing right down to my fingertips begin. I decided to do several loads of laundry, thought perhaps I should run out for groceries, then pick up Lulu's flea medicine at the vet, oh, and gee....I thought we were out of super glue.

But I reasoned that once I finished all those things I may be a tad tired, so before I began my errands I decided to write up a brilliant scholarly post elaborating on the specifics of the European League Against Rheumatism's (EULAR) disease activity index in the evaluation of Sjogren's syndrome found here. I cut and copied this table, then couldn't for the life of me figure what else to say about it. So here it is. Make of it what you will -- then please explain it all to me in a few weeks after I return to Earth from Planet Prednisone:

From:

Ann Rheum Dis. Author manuscript; available in PMC Sep 13, 2010.

Table 3

The EULAR Sjögren’s Syndrome Disease Activity Index (ESSDAI): Domain and item definitions and weights.

Domain [Weight]	Activity level	Description
Constitutional [3] Exclusion of fever of infectious origin and voluntary weight loss	No = 0	Absence of the following symptoms
	Low = 1	Mild or intermittent fever (37.5°–38.5°C)/night sweats and/or involuntary weight loss of 5 to 10% of body weight
	Moderate = 2	Severe fever (>38.5°C)/night sweats and/or involuntary weight loss of >10% of body weight
Lymphadenopathy [4] Exclusion of infection	No = 0	Absence of the following features
	Low = 1	Lymphadenopathy ≥ 1 cm in any nodal region or ≥ 2 cm in inguinal region
	Moderate = 2	Lymphadenopathy ≥ 2 cm in any nodal region or ≥ 3 cm in inguinal region, and/or splenomegaly (clinically palpable or assessed by imaging)
	High = 3	Current malignant B-cell proliferative disorder
Glandular[2] Exclusion of stone or infection	No = 0	Absence of glandular swelling
	Low =1	Small glandular swelling with enlarged parotid (≤ 3 cm), or limited submandibular or lachrymal swelling
	Moderate = 2	Major glandular swelling with enlarged parotid (> 3 cm), or important submandibular or lachrymal swelling
Articular [2] Exclusion of osteoarthritis	No = 0	Absence of currently active articular involvement
	Low = 1	Arthralgias in hands, wrists, ankles and feet accompanied by morning stiffness (>30 min)
	Moderate = 2	1 to 5 (of 28 total count) synovitis
	High = 3	≥ 6 (of 28 total count) synovitis
Cutaneous [3] Rate as “No activity” stable long-lasting features related to damage	No = 0	Absence of currently active cutaneous involvement
	Low =1	Erythema multiforma
	Moderate = 2	Limited cutaneous vasculitis, including urticarial vasculitis, or purpura limited to feet and ankle, or subacute cutaneous lupus
	High = 3	Diffuse cutaneous vasculitis, including urticarial vasculitis, or diffuse purpura, or ulcers related to vasculitis
Pulmonary [5] Rate as “No activity” stable long-lasting features related to damage, or respiratory involvement not related to the disease (tobacco use etc.)	No =0	Absence of currently active pulmonary involvement
	Low = 1	Persistent cough or bronchial involvement with no radiographic abnormalities on radiography Or radiological or HRCT evidence of interstitial lung disease with: No breathlessness and normal lung function test.
	Moderate = 2	Moderately active pulmonary involvement, such as interstitial lung disease shown by HRCT with shortness of breath on exercise (NHYA II) or abnormal lung function tests restricted to: 70% >DLCO≥ 40% or 80%>FVC≥60%
	High = 3	Highly active pulmonary involvement, such as interstitial lung disease shown by HRCT with shortness of breath at rest (NHYA III, IV) or with abnormal lung function tests: DLCO< 40% or FVC< 60%
Renal [5] Rate as “No activity” stable long-lasting features related to damage, and renal involvement not related to the disease. If biopsy has been performed, please rate activity based onhistologicalfeatures first	No = 0	Absence of currently active renal involvement with proteinuria< 0.5 g/d, no hematuria, no leucocyturia, no acidosis, or long-lasting stable proteinuria due to damage
	Low = 1	Evidence of mild active renal involvement, limited to tubular acidosis without renal failure or glomerular involvement with proteinuria (between 0.5 and 1 g/d) and without hematuria or renal failure (GFR ≥60 ml/min)
	Moderate = 2	Moderately active renal involvement, such as tubular acidosis with renal failure
	High = 3	Highly active renal involvement, such as glomerular involvement with proteinuria >1.5 g/d
Muscular [6] Exclusion of weakness due to corticosteroids	No = 0	Absence of currently active muscular involvement
	Low = 1	Mild active myositis shown by abnormal EMG or biopsy with no weakness and creatine kinase (N
	Moderate = 2	Moderately active myositis proven by abnormal EMG or biopsy with weakness (maximal deficit of 4/5), or elevated creatine kinase (2N
	High = 3	Highly active myositis shown by abnormal EMG or biopsy with weakness (deficit ≤ 3/5) or elevated creatine kinase (>4N)
PNS [5] Rate as “No activity” stable long-lasting features related to damage or PNS involvement not related to the disease	No = 0	Absence of currently active PNS involvement
	Low = 1	Mild active peripheral nervous system involvement, such as pure sensory axonal polyneuropathy shown by NCS or trigeminal (V) neuralgia
	Moderate = 2	Moderately active peripheral nervous system involvement shown by NCS, such as axonal sensory-motor neuropathy with maximal motor deficit of 4/5, pure sensory neuropathy with presence of cryoglobulinemic vasculitis, ganglionopathy with symptoms restricted to mild/moderate ataxia, inflammatory demyelinating polyneuropathy (CIDP) with mild functional impairment (maximal motor deficit of 4/5or mild ataxia), Or cranial nerve involvement of peripheral origin (except trigeminal (V) neralgia)
	High = 3	Highly active PNS involvement shown by NCS, such as axonal sensory-motor neuropathy with motor deficit ≤3/5, peripheral nerve involvement due to vasculitis (mononeuritis multiplex etc.), severe ataxia due to ganglionopathy, inflammatory demyelinating polyneuropathy (CIDP) with severe functional impairment: motor deficit ≤3/5 or severe ataxia
CNS [5] Rate as “No activity” stable long-lasting features related to damage or CNS involvement not related to the disease	No = 0	Absence of currently active CNS involvement
	Low = 1	Moderately active CNS features, such as cranial nerve involvement of central origin, optic neuritis or multiple sclerosis-like syndrome with symptoms restricted to pure sensory impairment or proven cognitive impairment
	High = 3	Highly active CNS features, such as cerebral vasculitis with cerebrovascular accident or transient ischemic attack, seizures, transverse myelitis, lymphocytic meningitis, multiple sclerosis-like syndrome with motor deficit.
Hematological [2] For anemia, neutropenia, and thrombopenia, only auto-immune cytopenia must be considered Exclusion of vitamin or iron deficiency, drug-induced cytopenia	No = 0	Absence of auto-immune cytopenia
	Low = 1	Cytopenia of auto-immune origin with neutropenia (1000 < neutrophils < 1500/mm3), and/or anemia (10 < hemoglobin < 12 g/dl), and/or thrombocytopenia (100,000 < platelets < 150,000/mm3) Or lymphopenia (500 < lymphocytes < 1000/mm3)
	Moderate = 2	Cytopenia of auto-immune origin with neutropenia (500 ≤ neutrophils ≤ 1000/mm3), and/or anemia (8 ≤ hemoglobin ≤ 10 g/dl), and/or thrombocytopenia (50,000 ≤ platelets ≤ 100,000/mm3) Or lymphopenia (≤500/mm3)
	High = 3	Cytopenia of auto-immune origin with neutropenia (neutrophils < 500/mm3), and/or or anemia (hemoglobin < 8 g/dl) and/or thrombocytopenia (platelets <50 mm3="" p="">
Biological [1]	No = 0	Absence of any of the following biological feature
	Low = 1	Clonal component and/or hypocomplementemia (low C4 or C3 or CH50) and/or hypergammaglobulinemia or high IgG level between 16 and 20 g/L
	Moderate = 2	Presence of cryoglobulinemia and/or hypergammaglobulinemia or high IgG level > 20 g/L, and/or recent onset hypogammaglobulinemia or recent decrease of IgG level (<5 g="" p="">

CIDP= chronic inflammatory demyelinating polyneuropathy; CK= creatine kinase; CNS= central nervous system; DLCO= diffusing CO capacity; EMG= electromyogram; FVC= forced vital capacity; GFR= glomerular filtration rate; Hb= hemoglobin; HRCT= high-resolution computed tomography; IgG= immunoglobulin G; NCS= nerve conduction studies; NHYA= New York heart association classification; Plt= platelet; PNS=peripheral nervous system;

After looking blankly at what I'd started to write, I decided that in fact it was time to head out on my errands. I poured myself a brimming travel mug of coffee, slapped a lid on it, and hopped into the car. And then returned to the house to put on my coat and tuck my shopping list into my pocket. And then after snapping my seat belt into the buckle, realized that I didn't have my keys. Lulu was completely confused by my coming and going and coming and going and coming and going.

Finally I was on my way. As I drove to the grocery store, it occurred to me that groceries were boring. And that shopping for groceries was boring. And a waste of all this perfectly good energy. So I pulled into one of those outlet stores that have the darndest things. I love those stores. An hour later, I left with three bags of junk unusual items that I simply couldn't live without. Like new cutting boards. And not one but TWO packages of super glue. And this beauty:

A battery powered shower scrubber! Brilliant! After doing all my shopping, I could scrub out both showers! And anything else that needed scrubbing! Maybe I could use it to give Lulu a bath, even!

I found myself hankering for something starchy to snack on. So I drove myself and my purchases through the Taco Bell drive-through and ordered one bowl of refried beans and cheese. I spent a whole dollar. I sped out of the parking lot smug in the knowledge that I hadn't caved and ordered three bags of their cinnamon crisps instead. And that in the process had only driven over one curb. Who designs those itty bitty lanes in drive throughs, anyway?

I felt myself begin to perspire as I drove, and tried to recall what I had planned to do next. I had forgotten that my list was hanging out right in my coat pocket, so drove directly past the grocery store  (Groceries? We don't need no stinkin' groceries! I was sure that I could whip up a gourmet dinner for John with canned tuna and whatever leftover vegetables were hiding in the crisper drawer of the fridge) and went all the way out to the veterinarian clinic because I vaguely remembered that Lulu needed.....something. I marched into the foyer, certain that these nice girls would help me figure out what it was that I came for. Thank goodness those nice girls did indeed sell me some flea drops. And heart worm pills. And set up an appointment for Lulu's next round of shots and routine exam.

As I climbed back into my car, I noticed with some disappointment that that lovely tingly feeling was beginning to diminish.

Rats.

And then suddenly.......it was gone. I was done. With everything. Lucky for me I was only blocks from my house at that point and within minutes was crashed on the couch surrounded by my purchases with my lovely Taco Bell refries sitting cold and forgotten in the car. Laundry? HA! Cooking a gourmet dinner? Forget it. And what on earth was I thinking when I bought this gadget for CLEANING? Pffft.

Funny how my day began with a bang at 9 AM and ended before noon. I think tomorrow I will skip drinking a gallon of coffee and take my prednisone with plain water. See y'all then....zzzzzzzzz......