Saturday Smile

So. Is there some kind of football game tomorrow?

Auntie Stress: Eight Ways To STOP IT

Blogger Juls It's Just a Bad Day tweeted a link to an interesting article by Auntie Stress who describes herself as: Marianna Paulson, also known as Auntie Stress to my clients and friends. As a stress transformation coach and educator, I am committed to helping you recognize your stress triggers and how to diffuse them. By learning and practising stress-transforming techniques that are appropriate to your situation, you will benefit from having more control and recovering much faster when you get into a negative or stressful state.

The article is a good reminder to all of us, chronically ill or not, that stress can make any life more difficult. It's entitled Eight Ways To Have More Energy. Have a look:

Energy. Got it? Want it? Need it? Like that last bit of the toothpaste in the tube, are you squeezing out what little energy you have left,  just to get through your week, your day, or the next hour? Does it feel as if a giant cosmic vacuum cleaner has sucked up all your energy?
If you’re wondering how to plug up those energy leaks – the ones that leave you begging for your bed, even though you end up tossing and turning and not getting the rest you need. Reaching for another hit of sugar or pot of coffee may provide you with an artificial charge to your day, but it’s not the ideal way to restore your energy.
There are things you can do to bring energy back into your life – things that will allow you to access your power. 

1. Stop micromanaging.
How much energy goes into managing the people and events in your life? Do you plan everything to the very tiniest of details? This urge to control has its roots in fear – the what-ifs that your mind creates and that you obligingly follow up on by directing, looking after, over-seeing, managing, planning, supervising and worrying. Granted, there is a need for this type of execution, but not for everything. There are times when you have to let go – let your children pick out their school clothes, give your employees autonomy to work within the guidelines you have established, or to not have every minute of a family vacation scheduled with military precision. Loosening up on the micromanagement belt allows for breathing room and more energy. 

As Bob Newhart says in this humorous clip, just stop it. Easier said than done, right? At the end of this post I will share how this can be achieved with less effort and more grace. Plus gain the wisdom to know when more management (and better processes are needed). 

Continue reading here.

Here's the awesome clip that Auntie Stress includes in her article. Oh my gosh. I love Bob Newhart.

AutoimmuneGal: Being an Autoimmune Mama

Ever since my diagnosis as I struggled with enormous fatigue and all the other aspects of Sjogren's,  I couldn't begin to count how many times this thought crossed my mind: Thank God that my kids are older. I don't know how I could have possibly managed had this disease begun when my children were tiny.

My concerns evolved as time went by. Because my kids WERE older, and as they married,  gradually my thoughts also included worries like these: I wonder if I've passed along any autoimmune diseases to my kids? And if so, how will they cope with a chronic illness and being a parent?

While it's true that the majority of women and men with Sjogren's are diagnosed in their 40's and 50's,  there's an increasing number of people being diagnosed at a much younger age, many of them young parents. They understandably have concerns about the impact that autoimmune disease will have on their families.

AutoimmuneGal, blogger, sjoggie, wife, and new mother, has written an excellent post entitled Being an Autoimmune Mama: The First Months in which she shares her anxieties and experiences in dealing with a new baby:

.....Now, for my confessional: I must admit that I had real fears before she came was that I would not be able to take care of her because of my health issues.  My worries ranged from big picture fears to specific practical concerns.  I literally lost sleep worrying that she would miss out on what she deserved from her mommy.  I didn’t want her to feel less love than other babies do because of my own health needs. 

At the same time, I was also worried about the day-to-day practical challenge of lifting her and taking her around.   Would I be able to carry her if I was tired?  Would she just be trapped inside most of the winter because of neuropathies and arthritic pain? 

Continue reading here. She ends her well written post by sharing several strategies for others facing the same challenges. Check it out.

Cue Pomp and Circumstance

.::sniff::. My parents will be so proud. .::dabbing emotional tears of pride::.

It's official. After several physical therapy sessions and with the completion of my attendance at a mandatory "Back Care" class today, I've graduated from post-op laminectomy care. I wonder if there will be a formal ceremony? If there is, I want to go.

I'm certain that if there were to be a ceremony, someone distinguished and of great importance would make the commencement address which would be dignified, excruciatingly long, pithy, and offer other graduates inspirational quotes from other highly successful post laminectomy patients. I would expect those accepting their diplomas to rise from their chairs using proper body mechanics and cross the stage wearing properly fitted arch supporting footwear while exhibiting healthy back postures which support their neutral spine curve using appropriately strengthened core muscles.

But before the speaker took the podium, I think it would be fun to pass around bingo markers and copies of these graduation speech bingo cards found on Wired.

Is my mortarboard on straight?

Hey. I want a cake.

Excuses Excuses

I think a decorative pillow is a far better use of burlap than as dog food. 

I'm finding it difficult to write today.

Why?

Because my front tooth fell out. Or more accurately, the crown where my front tooth used to be fell out. There I was just innocently chomping away on my organic amaranth no-sugar-added cereal, with walnuts sprinkled on and almond milk poured over, (I know. Pretty uninspired breakfast but I have a great deal of dietary atonement to do after vacation.) when I bit down on something that was decidedly not amaranth or walnuts. Lucky for me I didn't bite down hard and also lucky that I didn't swallow the thing.

So I spit it out and there it was. Ew. I looked in the mirror and was even more grossed out because all that was left of my original front tooth was this whittled down fang. A  call to my dentist's office and a few minutes later Julia the snaggletooth was on her way for a tooth re-gluing.

So I was traumatized. Yes I was. I give y'all permission to call me a real wimp.

I was all set to attempt to write a brilliant discussion about some of the latest Sjogren's studies that I had found interesting but my thought process was completely derailed by the frightening thought that I may have swallowed about a thousand dollars worth of dental work AND the knowledge that there was no. way. in. HELL that I would have consented to wait for the thing to make it's way through my innards and then -- even though cleaned up and autoclaved -- let it be reattached anywhere, especially inside my oral cavity.

Dr. F. spent probably a total of fifteen minutes with me to re-attach the thing, ten of which were spent regaling me with stories about other similar incidents with his patients that didn't end nearly as well, (like the lady that swallowed a four tooth solid gold bridge who opted to um....recycle... the thing) and also the items that his labrador had swallowed; the most entertaining of which was an entire burlap feed sack. I told him he had to quit with the stories or I wouldn't be able to stop laughing long enough for the adhesive to set up and then I'd be back tomorrow probably having the same problem.

By the time I left his office, I just couldn't get back into a scientific frame of mind. That's hard enough even without mental images of a large dog chowing down a whole feed sack or how one would go about cleaning up a four tooth gold bridge. So I gave up. And what y'all get today is just everyday drivel.

The quest to create an actually informative post continues, however. See y'all tomorrow.

What a Bargain Thanks to Eloise

Photo mine.

As so often happens here on Reasonably Well, I feel the need to begin my post with this disclaimer: I am not fabricating, exaggerating, or elaborating my account of the following event. It is true in every detail to the best of my recall.

So. Brace yourselves for one of "those" kind of posts. Y'all ready? 

Last weekend, our parish celebrated the feast day of the saint for which we are named: St. Thomas Aquinas. The festivities always include a fundraiser dinner. This year's dinner menu included a sumptuous prime rib and crab dinner accompanied by a silent auction. One of the items up for bidding was a two-for-one offer on our church's cemetery plots. 

Yes. You read that right. Hey -- two for the price of one is a great deal. Have you priced cemetery real estate lately? We're talking bargain basement prices here.

I thought his choice of wording was profound. 

Father O., a very spiritual young man with a great sense of humor, has for the past several years made a sign (which I've tried to re-create above) and placed it prominently with the other auction items such as religious art pieces, home made goodie baskets and vacation weekends. 

Cemetery plots are not usually hotly contested auction items. This year, however, things picked up considerably and the lucky winners were John and I. Yep. We are now the proud owner of two plots in a prime location in the Holy Cross Cemetery. Oh, yeah. Responsible planning adults, that's us. But I have not always been that kind of person. 

For most people, a purchase like this is really not particularly earth shattering. People are born. People die. And when they die, if they would like to be buried, they need a place to do so and it usually goes like this: Find a cemetery. Pick out a spot. Buy the thing. Boom. Done. 

I've had a really difficult time getting to the point in my life when I could discuss this sort of thing calmly and rationally. Previously, any discussion even remotely related to my death, or even more dramatically, John's death, typically would result in me sticking my fingers in my ears and singing some tuneless la-la-la song as I beat a hasty exit from the room. If John wanted to talk about a will, or our life insurance policies, or even show me where he has everything about our finances documented, I wanted to just run away. I am not kidding.

I'm not certain why. I believe that there is some kind of existence waiting for us after our soul leaves our bodies, and thinking about it doesn't provoke this response, and I don't think that I have anything other than the usual fear of my death specifically. So when John and I began a discussion about where we would like to be buried some day, and I found myself reflexively poking my index fingers in my ears, I decided that it was high time to explore and resolve my squeamishness about making some decision that dealt with the end of our lives. And I'm happy to report that after considerable thought, I have found a kind of peace about it all, and the memory of one person in particular eased the change in my thought process from cowardly to a tentative acceptance. I'm so thankful that I have this very old memory to recall when I needed it most. 

Her name was Eloise and she was a sweet tempered, petite, elderly woman with a headful of fine curly white hair and a skeleton so fragile that transferring her from chair to bed could be enough to cause a fracture. Although her body was failing her mind was not, and she remembered accurately the names of each of us who cared for her back at that hospital in the late '70s. Eloise was hospitalized for a lengthy period of time and checking in with her as the rest of my patients were sound asleep became one of my favorite times of the night shift. Tucked into her bed with a crocheted throw covering the stark hospital linens, the harsh overhead lights turned off, and in the rosy glow of her favorite rosebud enameled bedside lamp with tasseled pink shade, she would pat the chair next to her bed and invite me to tell her everything about my day. Or my family. Or my new boyfriend. Or......anything other than the cancer that was taking her away from us far too quickly. I loved sitting there for those conversations -- and her.  

As Eloise declined and became closer to her death, unbelievably she didn't lose any of her ability to speak with clarity even though her pain medication dose kept climbing. She was drowsy, yes, but each word was enunciated perfectly and carefully. 

I'll never forget the night that she died. She had pushed her call button shortly after one of our visits during which I administered pain meds into her IV, rubbed her frail legs and arms with perfumed lotion, and settled her in for the night. Usually after our routine was completed she would doze off for three or four hours at a time, so I was surprised to see her call light blink twenty minutes or so after I had been in her room. Was she in pain? Had I forgotten something? I entered her room to see her sitting up in bed with sweet smile on her face. 

"Oh, Julia. I'm so glad that you had time to stop in. I want you to meet my family. Isn't it wonderful that they're all here?" She made a sweeping gesture that indicated fully half of her room at the end of her bed. 

"This is Julia, everyone. I shall miss her and all the other nurses."

I slid my hand over to her wrist without moving my eyes from her face and took her pulse. It was slow, but steady. She continued to smile at the ghostly gathering, so I directed my gaze down to her chest and counted the shallow but regular respirations, then to the empty space at the end of her room and said tentatively,  So nice to meet you. 

"I think they're here to take me home," she told me then turned again to look at her family. "Are you here to take me home?"

Her smile lost none of it's brightness as she weakly dropped back against her embroidered pillowslip then sighed happily.

"Have you come to get me on that beautiful white horse?" She closed her eyes. 

I quickly glanced up. I found myself wishing that I could see what Eloise was seeing. Under the light pressure from my fingertips, I could feel her pulse begin to drift into a slow irregular beat and could hear her respirations become shallower. I pushed the call bell, and a co-worker poked her head in the door.

Nancy. I just want you to know that I'm going to spend some extra time here with Eloise tonight. Maybe for quite awhile. and gave my nursing assistant a meaningful look. Nancy was one of those intelligent and perceptive women that needed very few words to understand my message: Eloise was dying.

I don't know how long we sat together in peaceful silence, just she and I. I seem to remember that it wasn't a very long, or perhaps the experience was so comforting that time passed quickly. But at some point, she just wasn't breathing anymore, and her pulse stilled. Her lovely face turned that very unusual pale shade that happens after death and took on that unmistakeable look of something that was truly inanimate. 

I sat for a few minutes before I summoned my co-workers to begin the chain of events that follow in a hospital after someone dies; wanting to find some explanation or meaning for the indescribable feeling that surrounded what I had just witnessed. I still can't find the right words to convey it all except to say that I knew I had been gifted with the privilege of the tiniest glimpse of what death looked and felt like for this amazing woman. I tucked that memory away, only to be found in difficult times when I find myself or others questioning the existence of a hereafter. And if I take time to quietly re-create as much of that episode in my memory as I possibly can, I find a peace of sorts which comforts me enormously. 

So thanks, Eloise. Yesterday I smiled as I handed over the check for my own gravesite. I wouldn't have been able to do it without your help. 

Another Win for Venus: Australian Open 2015

Image found on Wikipedia

My favorite tennis pro is playing winning tennis these days. Venus Williams and her sister Serena have moved on to the Australian Open quarter finals:

......She is through to the fourth round of a Grand Slam tournament for the first time for four years. She now plays Poland’s Agnieszka Radwanska. 

“That feels fantastic especially when things happen in your life that are not in your control,” Williams said in reference to her struggles with Sjogren's syndrome, an incurable auto-immune disease that can cause joint pain and fatigue. 

“But I don't want to stop now, I want to keep it going,” Venus added. “This little cat has a few tricks up her sleeve.”

Go get 'em Venus! You can read more here.

Unexpected View

After a restful night's sleep,

I woke up to this.

Um. Frodo....would you mind pointing your hindquarters in a different direction?

Sjogren's Forum: Newly Diagnosed

Are you newly diagnosed? Dr. Nancy Carterton coauthor of "A Body Out Of Balance" writes a blog entitled Sjogren's Forum. She recently answered this question that many of us have asked before:

Q:  I have been recently diagnosed with Sjogren's and have been suffering with
severe symptoms of dry mouth and sialadenitis, etc.. I have an appointment at
UCSF sjogren clinic in a few weeks. I don't have a treatment plan and am
struggling with "putting out the fire" of symptoms right now. I need direction and follow up on my submandiblar gland. I do not have an ENT. Any guidance or help is appreciated. Diet and eye drops are not enough. 

A:  A good place to start is the Sjogren's Syndrome Foundation (SSF ) www.sjogrens.orgMany resources are available including a DVD, Product Resource Booklet, Support Group contact info ... to name a few. 

There are a growing number of on-line resources and communities available to explore, such as http://www.reasonablywell-julia.blogspot.com. This is a Blog and Resources provided by an RN who herself has been on the journey.
Putting together a team of medical guides depends on what specifically one needs at a given time in the journey of discovery. Continue reading here.

So. Um.....I have to confess that I was surprised and delighted that Dr. Carterton listed Reasonably Well as a resource. But it's only one small item in her list of resources and strategies. Head over there to read it all.

Peripheral Neuropathy -- Again

Zombie portrait found here. 

Guys. I feel like a walking zombie lately.

I've definitely chalked some of my zoned-out spaciness to recovering from our trip; but I think that this particular fogginess has a different quality than my usual post-vacation crash. It's hard to explain but after this many years of autoimmune fatigue and brain fog, I know what THAT feels like. And this isn't it.

I also suspect that I know what's causing it all. It's complicated. Ready for a long story?

Over the past six months or so all sorts of things have happened to this old body of mine, the biggest being the symptoms from spinal stenosis and the laminectomy that followed. As I healed from the surgery and the compression was relieved on those nerves, I realized that the radiculopathy from the stenosis was masking other neurological problems.

Gee. What a treat.

Make no mistake -- I'm thrilled with the results of my laminectomy. I can walk for any length of time without that terrible radiating pain and numbness in my butt and leg and foot. But the neurological problems that I'm having now have nothing to do with those large nerves that exited my T4 and S1 vertebrae.

When the major pain and numbness went away after my surgery, it unmasked other pain that was not caused by the stenosis: peripheral neuropathy manifested by generalized burning and pain in my feet along with the bizarre sensation that the skin of my lower legs is vibrating. Buzzing. Strange. Worse at night just when I'm trying to sleep.

I have been dealing with PN for quite some time, although to a lesser degree than lately. You can read my earlier post addressing this issue written back in January of 2013 here.

The result is that I have added Neurontin (gabapentin) to my medications, and I have to say that it has indeed reduced my symptoms. But unfortunately along with the good, came my dopey sensations. I have let my doctor know about it's effects, and hopefully after continued use the side effects will decrease.

In the meantime, well....don't be expecting many posts that are coherent.

Do you take gabapentin? How has it affected you?

Pain Strategies

I saw the link to this infographic on Twitter yesterday and thought it offered simplistic yet helpful reminders for those who are managing their chronic pain. Found on APMhealth.com:

So What's Going on Now?

This one's my favorite. 

Sigh.

I'm frustrated. I've dumped over yet another glass of water from my nightstand. Luckily this time there were no electronics in the splash range and the only cost to me was a few minutes of lost sleep as I stumbled over to the linen closet for a towel to mop up the mess.

I've tried using all kinds of sippy cups which are useful in avoiding the spill factor, but not the clumsiness one; resulting in me scrambling from bed to retrieve the cup as it bounces and rolls after I whap it off the table.

I'm concerned about two things one being the obvious: that I'll eventually fry my phone as it is always placed next to my water glass at night. The second is concern that I seem to be knocking things over more frequently these days and feeling more clumsy in general.

I drop things. My hands wobble when I try to eat things. I've always been prone to goobering food down my front as I eat, but I seem to be getting worse. As I walk down hallways, more often than not I'll hit first one side of the corridor then the other like a bumper car.

I'm thinking that this is something that I need to discuss with my doctor. Is it the result of some new medications that have been added to my regime? Is this caused by my disease? Or is it just the way I am?

I'll keep y'all posted.

Are YOU wobbly?

UII:What's it All About, Anyway

Jennifer Pettit, sjoggie and author of the blog UII - Understanding Invisible Illnesses has written an excellent powerful post.

Jennifer and her husband are a vibrant young couple immersed in the usual challenges for those in their age group: education, jobs, and looking to start their family. What's unusual, however, is that autoimmune disease has made many if not all of these challenges even more difficult to overcome.

Read this, then go read the post in its entirety:

We have a lot of expectations in (and of) this life.   

For many of us, those expectations include having kids and building a family.   

Obviously, this has been a topic of great importance to me lately, for at least the last 20 months of trying to conceive at a minimum.  At the outset, I had some pretty basic expectations of the stages involved, and what choices or options or components there might be with each one. 

This is your first glimpse into how my brain works, isn't it.  Yes, I think in flowcharts, lists, and graphics - so what ;) ..... continue reading here. 

Breathing Deeply

Ahhhh. It's so good to be home. Back to our wonderfully delicious moisture filled atmosphere, green mossy trees, and foggy wintery days. Resting up. See y'all tomorrow.

There and Back Again

As you probably can tell from my previous posts, John and I have been on yet another of our infamous drive-abouts. This one included family visits from the desert to the ocean; the most important of which was an opportunity for John to give Daughter #1's new boyfriend the daddy inquisition.

Who responded with great courage, a fair amount of humor, and remarkable intelligence, I might add.  At least I thought so. John's only response was a terse, "Not bad."

I think considering that this was their first meeting and in view of John's fiercely protective attitude towards his daughter that the boyfriend should consider this very high praise indeed.

The journey was exactly how we both loved to travel. We set our own pace. We had leisurely fabulous meals. Our priority was spending time with family.

Ahhh. Life is good.

Just This

That is all. See y'all tomorrow.

I Need One

Hey. For sjoggies with sniffer problems like me, the perfect solution:

by Chris Hallbeck and found on Savage Chickens

One Thing: Part Two

Over the holidays, our friend Matt reviewed with me the various manual setting on my Canon. He's a very good photographer and I'm in serious envy of his awesome skills. Our discussion reminded me of the enjoyment I get from goofing around with Canon and as mentioned in an earlier post, how much I love taking pictures of ONE thing. So here's some more.

One tunnel. Reminds me of the Twilight Zone. 

One blackbird.

One car on one awesomely beautiful road.

One.....will someone please tell me what this one clump of plants is? Are? 

One pooped puppy and her pooped out photographer. It appears that John likes taking pictures too. 

Try This

I want to effusively thank the anonymous person that suggested this trick to keep those pesky heavy blankets off your toes. Because there's times when even a sheet hurts. It goes like this and costs nothing:

See what I did there? First, tuck your sheets and blankets in snugly at the foot of the bed. Then take a firm pillow and jam it under the covers so that it's standing up on edge. I would have used a photo that showed my feet happily snuggled in there but my pedicure is not particularly attractive right now.

You're welcome.

She'll Be Coming 'Round the Mountain

Early Friday morning, John and I hopped into the car and headed toward Mount Hood. We neared the peak just as the sun began to rise. Ooo.

I've come to realize that I really, really like to take pictures of ONE thing. Like, one mountain:

Or, one deer; who incidentally really stood that close to our car. No telephoto lens on that shot.

One tree:

This one's my fave:

Funny how I like my picture subjects singular; but the guests in my house plural.

I have my priorities.

As much as I love sharing the minutae of my life with y'all, this post will be brief almost to the point of non-existence. No time for blogging. The Green Bay Packers game is on this morning. Go Pack! 

Saturday Smile

Taking Aim at a New Target

Image courtesy Easy Vectors

When the AARDA (American Autoimmune Related Disease Association) posted a link yesterday to the clinical trials results of a drug with potential use in the treatment of autoimmune diseases, I was intrigued.

A new drug in the autoimmune world? Interesting, I thought.

The drug, ADP334, is manufactured and currently undergoing clinical trials by Arena Pharmaceuticals:

"Lymphocyte lowering at the level demonstrated in this trial has been shown to correlate with clinical efficacy in Phase 2 and Phase 3 trials of other S1P1 modulators in multiple sclerosis, psoriasis and ulcerative colitis," said William R. Shanahan, M.D., Arena's Senior Vice President and Chief Medical Officer. "The results of this trial support investigation of the efficacy and safety of APD334 in patients with autoimmune diseases." 

The randomized, double-blind, placebo-controlled Phase 1b clinical trial evaluated the safety, tolerability, pharmacodynamics and pharmacokinetics of multiple-ascending doses of APD334. In five different dosing cohorts, a total of 50 healthy volunteers received APD334 and 10 received placebo for 21 days. 

"Based on these impressive results, we plan to expedite APD334 into Phase 2 clinical trials for ulcerative colitis and Crohn's disease," said Jack Lief, Arena's President and Chief Executive Officer.

Of course, once this news was released to the press, shares of this company's publicly traded stock soared in value, hence the 1/7/15 Yahoo Finance article quoted above.

I wondered what made this drug different from other currently prescribed drugs that affect the immune system such as Azathioprine (Imuran), Mycophenolate mofetil (Cellcept), Cyclosporine (Neoral, Sandimmune, Gengraf), Methotrexate (Rheumatrex), Leflunomide (Arava), Cyclophosphamide (Cytoxan), and rituximab (Rituxan) to name just a few.

And then I read this:

APD334 is a potent and selective, orally available investigational drug candidate that targets the S1P1 receptor. Discovered by Arena, APD334 has therapeutic potential in autoimmune diseases. S1P1 receptors have been demonstrated to be involved in the modulation of several biological responses, including lymphocyte trafficking from lymph nodes to the peripheral blood. By isolating lymphocytes in lymph nodes, fewer immune cells are available in the circulating blood to effect tissue damage.

In other words, drugs in this new class target a different lymphocyte receptor than other drugs in the treatment of autoimmune disease. To understand this all a bit better, it's helpful to know what a lymphocyte receptor is and why it's so important for these drugs to target them. Here's an excellent explanation courtesy of NobelPrize.org:

White blood cells called lymphocytes originate in the bone marrow but migrate to parts of the lymphatic system such as the lymph nodes, spleen, and thymus. There are two main types of lymphatic cells, T cells and B cells. The lymphatic system also involves a transportation system - lymph vessels - for transportation and storage of lymphocyte cells within the body. The lymphatic system feeds cells into the body and filters out dead cells and invading organisms such as bacteria. 

On the surface of each lymphatic cell are receptors that enable them to recognize foreign substances. These receptors are very specialized - each can match only one specific antigen. 

To understand the receptors, think of a hand that can only grab one specific item. Imagine that your hands could only pick up apples. You would be a true apple-picking champion - but you wouldn't be able to pick up anything else. 

In your body, each single receptor equals a hand in search of its "apple." The lymphocyte cells travel through your body until they find an antigen of the right size and shape to match their specific receptors. It might seem limiting that the receptors of each lymphocyte cell can only match one specific type of antigen, but the body makes up for this by producing so many different lymphocyte cells that the immune system can recognize nearly all invaders.

So more specifically, what is an S1P1 receptor?

There are five different sphingosine 1-phosphate receptors on lymphocytes. This drug targets the first: S(sphingosine)1P(phosphate)1. These receptors are important because they control lymphocytic exit from lymph nodes and their recirculation into the blood, resulting in less of these autoimmune active lymphocytes in the circulating blood stream. Read more here.

Arena's drug is not the first to target this type of receptor. Oral fingolimod, (Gilenya) manufactured by Novartis is currently being used to treat MS. You can read more about one of the drug studies leading to it's manufacture and use here. Like all drugs that modify immune mechanisms, Gilenya is not without significant risk, one being a slowing of the heart rate or alteration of the normal electrical pattern in the heart.

The absence of apparent cardiac effects in this early study of Arena Pharmaceutical's new drug is impressive:

There were no clinically significant safety findings with respect to heart rate or rhythm or pulmonary function, and no clinically significant elevations in liver enzyme tests.

 I'm looking forward to seeing how this drug stands up in additional trials, since the development of new tools to treat autoimmune disease is vitally important.

Stay tuned, people. This should be interesting.

That's All For This Year, Folks

Gee. We didn't even finish our Christmas puzzle this year. At least not the jigsaw puzzle -- the kids decided to put together Lego kits instead. I guess that's a kind of puzzle....but I'm not giving up. We'll finish this thing even if it takes us until Halloween. 

Well, now that the Wise Men have come and gone and Epiphany is over; it's time to take down this year's Christmas light show.

Awwww.

We had a sunny calm day yesterday, so John and I took advantage of the dry weather to break things down and pack everything up. It's funny how quickly everything was taken apart yet how long it will take to reassemble it all in the fall. My neighbor Dan stopped by to inform us that it was only 330 more days until Christmas! and thought since the holidays were so quickly approaching, that we should just leave it all up.

I told him to take that idea up with our homeowner's association. Yeah.

As we were rolling up cables and packing away the lights, a family that was driving by shouted their appreciation through their car windows. Nice. One of the final things we did was to unplug Pinky.

Don't worry, big guy. You can still live on the porch and I promise you'll be the center of attention come Easter.

Here's Why

You can read why The New Yorker chose Pope Francis as Person of The Year in 2013 here. 

I want to thank everyone that has written to me expressing their concern and sympathy after my recent post in which I wah-wah-wahed about not being able to take a trip this fall. Along with the caring words, many asked if I would share exactly where I wanted to go that would be beyond my capabilities, and so this post addresses those requests. It's not a secret, sorry if it appeared that way, and to be honest I'm still stewing in my juices over my decision. Wah. Wah wah. You can read why I'm not going here.

Before I begin, however, I'm asking y'all a favor: Please, please, please.......I respect completely your freedom to choose how you worship or if you choose NOT to participate in religion, so I would appreciate the absence of any commentary whether here in the comment section or via email regarding my choice of expressing my spirituality, which is in Roman Catholicism. I only make this request because previously I've received some snarky communications in which my choice of faith is questioned.

I am what I am, people. And I love that y'all are who you are, too.

Alrighty, then.

Do you admire a living public figure, be it a rock star or an actor or and elected official, or......well. You get the idea. Would you do just about anything to see that person face to face? Or just to be in the same general vicinity as that person? Would you feel that you would somehow be a better person just because you could be present when he/her did what they do best?

You do? So do I.

I want more than anything to see Pope Francis in person.

I know, I know. There's a zillion opportunities to see and read his works in the media. He has his own Facebook page and tweets regularly as @Pontifex on Twitter, for pete's sake. And, of course I follow him on Facebook and Twitter. I have read his first encyclical and I'm looking forward to reading more. But as any person that is a rabid fan of a celebrity knows, the experience of video or print is just not the same as a personal encounter, even if that encounter includes a million other people.

I have a feeling that this gentleman is something beyond special. I wonder if someday he will be a saint. His deep compassion for everyone, including every person on this planet, along with his incredible depth of spirituality is evident in every thing he does and says. One of my favorite of his meditations is entitled "God's Lullaby" and includes this passage:

...“You are righteous because God has come close to you, because God caresses you, because God says these beautiful things to you with tenderness: this is our justice, this nearness of God, this tenderness, this love”. And “our God is so good” that He runs the “risk of seeming foolish to us”. Indeed, the Pope affirmed, “if we had the courage to open our heart to this tenderness of God, how much spiritual freedom we would have! How much!”. He then concluded with some practical advice: “Today, if you have a little time at home, pick up the Bible: Isaiah, Chapter 41, from verse 13 to 20, seven verses. Read it!”, he said, “in order to enter more deeply into the experience of “this tenderness of God”, of “this God who sings to each one of us a lullaby, like a mother”.

Tenderness. Love. Beauty. A lullaby. What an amazing, comforting, and healing message to us all.

Pope Francis will be in the United States this fall and one of his destinations is Philadelphia to celebrate the World Meeting of Families. During his visit, Pope Francis is expected to attend the Festival of Families on September 26th and celebrate Mass on Sunday, September 27th. Both of these events will be held on the Benjamin Franklin Parkway in Philadelphia, PA and are free and open to the public. I had hoped to be one of the millions to celebrate the Mass with Pope Francis.

You can read more about Pope Francis in this article from the December 2013 issue of The New Yorker. Here's an excerpt but you can read it in full here.

“Who am I to judge?” With those five words, spoken in late July in reply to a reporter’s question about the status of gay priests in the Church, Pope Francis stepped away from the disapproving tone, the explicit moralizing typical of Popes and bishops. This gesture of openness, which startled the Catholic world, would prove not to be an isolated event. In a series of interviews and speeches in the first few months after his election, in March, the Pope unilaterally declared a kind of truce in the culture wars that have divided the Vatican and much of the world. Repeatedly, he argued that the Church’s purpose was more to proclaim God’s merciful love for all people than to condemn sinners for having fallen short of strictures, especially those having to do with gender and sexual orientation. Continue reading here. 

So. There you have the real reason behind my tantrum. I wonder what Pope Francis' advice to me would be should I vent my complaints to him......?

Medpage Today: Docs, Shut Up (Also, Your Tweets Stink)

If you're reading this post, I'm assuming that you are one of those folks that enjoy perusing health blogs directed at patients, am I right?

Or alternately, you're a crazy person that enjoys reading blather about Schnauzers and Titanic sized biscuits. Bless your hearts.

Have you ever wondered what types of media that physicians read? Here's an interesting article from MedPage Today that contains links to a plethora of topics aimed at health care providers. I love the title: Docs, Shut Up (Also, Your Tweets Stink). Here's a smidgen of links from the post, but head over there to read it all. Happy clicking:

"Doctor, shut up and listen," says the chief medical officer of a health system. 

Doctors' tweets from conferences aren't very accurate, according to a small study. 

One urologist is challenging women to get the men in their lives to test their PSA and testosterone levels. Former hospital CEO Paul Levy calls this a "tactic worthy of used car salesmen." 

Doctors in Africa are divided over whether patients there infected with Ebola should receive IV hydration, The New York Times reports.

The Biscuit That Never Ends

Right about this time of year, EVERY year, I find myself thinking, "Whoa. After all those Christmas goodies I'm just really sick of food. Any kind of food." John told me he agrees.

How about you?

Of course the exception is disgustingly healthy-eating Terese and Company; who let slip that this year they didn't have even one Christmas cookie in their house.

(That's crazy talk, if you ask me. But then she's probably not feeling as bloated as I am these days.)

So we all went out for brunch after church yesterday with the idea of eating a light meal. The problem was we didn't realize that the restaurant we had chosen was famous for it's generous portions. John ordered a - thinking singular and thus small - biscuit and gravy. This is what he got:

That, folks, is their idea of one biscuit. I can't imagine what his plate would have looked like had he ordered two.

Um. I think we'll try eating light tomorrow.

It's a New Year's Miracle

Guys. It's the most amazing thing.

Are ya'll ready for this? So we all went out for ribs yesterday. Yummy tender bbq sauce dripping baby back ribs.

And, dumb stupid me wore a pristine white sweater. Yeah. Not smart for Goober Queen here. So I draped myself with all the napkins I could find and hoped for the best.

*cue celestial choirs singing Ahhhhhhhhhhhhhhhhhhhhh*

Ladies and gentelmen, I give you: one spotless white sweater and an only slightly goobered napkins.
Here's the indisputable evidence:

What? You don't believe me? I give you permission this ONE TIME to ask Terese. She'll tell ya.

With Apologies to Mr. Miyagi

You know how when you're filling your medication box, and you think you've got everything you need and you sit down to start counting and filling? And then there's a bottle that hasn't been opened yet? And it's got all that dumb stupid foil stuff on it which you can't just pull off? So actually you should get your big butt off the chair and just get a knife or something sharp to puncture it but you're too lazy?

And then you think of The Karate Kid movie and how you should just use some of his moves? Like the one where you just visualize your thumb effortlessly moving through the foil into the bottle?

Yesssssssssssss.

I need to see small things as victories.

I also really need to get out more....

This is Not What I Had Planned

Yesterday I indulged in a good old fashioned sulk. You know what a sulk is, don't you? I considered using another word to describe what I was doing and how I was feeling but this definition is actually beyond accurate:

noun:
1. a period of gloomy and bad-tempered silence stemming from annoyance and resentment.
"she was in a fit of the sulks"
synonyms: (bad) mood, fit of ill humor, fit of pique, pet, huff, (bad) temper; the sulks, the blues

Yes. Yes I did. In spite of the fantastic holiday season during which I enjoyed significantly less pain and more energy than years past, John was forced to endure a couple hours of my "gloomy and bad-tempered silence".

Yes. Yes he did, poor guy. Even though during which he took me out for a delicious lunch followed by a movie.

Ungrateful? Heck, yes. Honestly, Julia...

Here's what sparked it all:

We were discussing how to best plan 2015 in terms of using John's vacation time. There are a few things that we (or I) thought would be the best use of his vacation. One being something that we both would enjoy a great deal, and the other.....well, the other event would be problematic on many fronts: It would involve a long flight, would require standing and walking for long periods of times with the potential of said standing and walking occurring in late summer heat, there being a very real a chance on not being able to get tickets to the event, and would require a fairly large expense budget.

Doesn't that sound like FUN?

So when John and others very tactfully tried to point out several flaws in the above plan, any logical and sane person would have taken these very real problems into consideration and would have immediately agreed. Which means that of course I didn't. My Bratty Inner Child Julia reared her bratty little head, took over my emotions completely, and I stubbornly dug in my heels.

I could agree that this would be an expensive and tiring outing for anyone. But when the insinuation was made that it simply was beyond my abilities, THAT'S the point when my unreasonable behavior began. Even though some small part of my consciousness was pleading with BICJ to listen to reason, I simply wasn't able to get past the surge of anger and resentment and yes, denial that began to rise with this comment, "Do you REALLY think you could do that? I mean.......it would be hard even for me!"

"Even for me!"...........

Whoa, Nellie. Them there were fightin' words, pardner. My dander was seriously in a dither. Although I was miraculously able to keep my mouth shut for the most part, here's the gist of the things that I really wanted to say:

No? You're telling me I can't? You're telling me that I'm not going to? You're saying that I'm just a big old sickie incapable of this thing? Oh, yeah? Oh, yeah?? Well you just WATCH me, big guy!

I'm so thankful that by some external incredible grace I didn't let those things actually be said, because even as I was thinking them I realized in my heart that my argument wasn't with John or any other person. I knew that John and my friends wouldn't ever say anything that would hurt me.

No, my argument wasn't with them. It was with me. Or, more accurately, I wanted to have a no-holds-barred, rip roaring, down and dirty screaming match with my disease. I wanted to holler:

You stink! You're a dumb stupid ridiculous disease and I want you to get the hell out of my body! I hate you! I hate everything that you've done to me! I hate everything that you have taken away from my life! I hate every stinkin' thing about you and your ilk!!

I sat in the restaurant staring at my soup wanting to cry; and thanks to my guardian angel or God or just some small remnant of common sense, managed to say only this:

You're probably right. But this is.....this would be a huge concession to my disease.  

And a few minutes later quietly but fiercely,

I hate this disease. I just hate it.

When I had time to get myself together, I told John that I was done being a poop and that I was sorry. He, bless his heart, rubbed my back and told me that if this were a trip that was really important to me, he'd see that it would happen. Is he amazing, or what?!

But, we're not going to go. He's right. It would be beyond my abilities. And even if I managed to get through the event, most likely it would induce a crash of epic proportions leaving me semi-conscious in a hotel room for several days before I'd be able to travel all the way across the United States home. Would it all be worth it? Would it be fair to John and any travel companions? Would it be a good use of our money when this kind of budget would otherwise be put to far better things?

No. Of course not.

So now, a day later, as I'm thinking about this experience, I still am amazed at my capacity to deny the realities of living with autoimmune disease.  I'm still surprised that after a whole decade of dealing with the effects I can completely and totally underestimate how life-changing it is.

I'm still surprised that it is so hard.

Is it Really 2015?

Ahhh. A new year. I wonder what lies ahead?

Wait. Maybe I don't really want to know. Sometimes a surprise can be a good thing.

Or not.

Well, regardless of whatever may come our way, Happy New Year's!

This should be interesting.......Y'all will keep me posted, I hope?