Trust is a Real Gift

Although this isn't him, the Maine Coon cat pictured above and found on Wikipedia looks just like our Louie, may he rest in peace...

I'm glad to report that I'm feeling somewhat better after my little neutrophils-went-missing incident a few weeks ago.

Wow. I never want to revisit that experience again....

It left me feeling like what my dad would describe as weak as a cat. Which is kind of an interesting phrase, come to think of it....especially since every cat I've ever known actually would never have been called weak.

All of our cats have been fat and very full of beans. One in particular, Louie, was strong enough to chew his way into the innards of our couch and roam around in there. He also was responsible for most of my curtain rods in the basement windows being completely bent since he liked to perch on top of them. He showed particular strength when I would attempt to drag him off the top of the windows. Ahh. Louie. Miss you, big guy.

Where was I going with this...... Oh, right. I was feeling weak as a (not a cat). This particular flavor of tired/fatigue/weakness is brand new in my experience with autoimmune disease. Dr. Young Guy and I were discussing it yesterday afternoon, and I confessed to him that I felt kind of scared by the whole thing.

Yes, he said. You had me worried.

I was surprised to hear that since he always appears to be completely unflappable. I'm really grateful that one of us could keep their cool in the situation since I was pretty unhinged physically and mentally by then. It's been years since I went all teary-eyed in a clinic exam room. But Dr. YG's calm demeanor and quick plan of action was reassuring. I told him that I trust you, really I do!

I did. And still do.

Confidence in my care is an invaluable thing when my brain goes missing in situations like that. To be able to trust someone's abilities to the extent that I could lay my anxieties aside and rely on his judgment is a rare thing.

It's hard work being your own advocate in the health care system. It requires having a brain that is capable of remembering things, analyzing things, exploring resource type things, and feeling vigilant always. When I'm tired or foggy or flaring, I'm stupid. Seriously. Doesn't make for good advocacy work if I can't even remember my name; much less my medical history including what specific types of DMARDs that I have been treated with.

So even though I know that I praise Dr. Young Guy often, in this particular instance he especially deserves a few kudos. There's very few people out there that I trust enough to allow me to switch my brain off for awhile knowing that when I do, the rest of me is in good hands.

I've given up on my brain. But then that's a whole other discussion...

Are you thinking that I'm being a bit unrealistic here? And expecting Dr. YG to never make a mistake? Or that he would never make a decision that I would disagree with?

Of course not. He's human. None of us is perfect.

But it's so much easier to put confidence in someone who has already demonstrated that his philosophy of delivering medical care closely matches mine, and has looked for not only my agreement in my plan of care but expects me to be an active member of the decision making process.

I've told him that he can never move. Or change jobs. Ever.

What? You think THAT's being unrealistic? Nah.

Patience is a Virtue

I'll bet that all the Creativity Challenge prize winners are sitting around thinking, "Huh. Haven't seen any PRIZES appear in my mailbox. The whole thing was probably just a ruse to get my address so that Julia can sell it to junk mail companies..."

But hold on there, folks. Let's not jump to any conclusions.

Here's proof positive that your prizes are indeed on their way, as shown in this photo; which taken immediately before said prizes were whisked off to the local post office.

And I want y'all to know that these little goodies were hand wrapped by ME and probably contain my blood, sweat, and tears  on them somewhere....I suppose it really wasn't a safe decision to arm prednisone-shaky-me with a sharp instrument.

It's one of the few tasks that's been completed around my house by ME instead of John in the past few weeks.

See? See how DEDICATED I am to my readers?

Um. Some of them were wrapped and labeled more tidily than others. So all you lucky winners can guess where your particular package was in the line-up for completion.

Our Immune Systems Don't Need Boosting

Image found here. 

I feel the need to apologize to a reader that sent a question via email recently, because for the life of me, I can't FIND that email.

I remember thinking to myself as I read, Well. That's a really good question! and making a mental note to reply and perhaps write a post around the subject. And then......BAM. My WBCs went missing and the next week or so was kind of......weird. Somewhere in there I misplaced the email although I can't imagine how I did that. I believe I misplaced a lot of things over the last few weeks...

From what I recall, I seem to remember that the question was something like this: "If all the medicines that I take suppress the immune system, what can I take to support immune function? Shouldn't I be taking supplements that boost the immune system?"

The answer? No: DON'T TAKE ANYTHING THAT WILL ENCOURAGE IMMUNE ACTIVITY. And always check with your doctor before using supplements, since many can have very important interactions with medications that you may be taking. (For example: Melatonin can block the effects of prednisone.)

This is important. Why? Let's back up a bit and review the basics of autoimmunity: in autoimmunity, specifically in Sjogren's syndrome, our immune system has a serious flaw. It loses the ability to distinguish between the body and invaders of the body. That is, our immune systems begin to attack our own healthy cells in our moisture producing glands as if they were a bacteria or virus or other agent capable of causing disease. So our own immune system is very, very busy.

It doesn't need any boosting. It's too busy.

Which is why immunosuppressant drugs are often used in the treatment of autoimmune disease. Our immune systems need to be suppressed so that less of our normal tissues will be destroyed, and by taking drugs and supplements that boost immune system performance only makes our disease activity worse.

Which supplements should we NOT take?

A partial list may include ginseng, coenzyme Q10, echinacea, zinc, astragalus (Huang-Qi), garlic, wild indigo, and any herbal supplement that promises to support immune function.

You can read more about supplements here, and here, and here. Always check with your doctor before beginning the use of any supplements.

++Addendum++ June 1, 2013
 Hi everyone-- This recent post about supplements'  potential for actually doing more harm than good generated an interesting response. It was one of the first pieces of advice that my rheumatologist at the time of my diagnosis gave me. But I can see that since that advice was given ten years ago, that there are some differing opinions about a few of the supplements (supplements taken daily- not the nutrient or vitamin found in healthy foods) garlic in particular. I guess that the take-away from that post is: never assume that supplements are without side effects, and always check with your doctor to discuss your particular situation before beginning long term use of these products.

Laura C. Strom: Adverse Childhood Events and Disability

Image found here. 

Fellow sjoggie Laura C. Strom,  licensed Professional Clinical Counselor and Marriage and Family Therapist, has written a thought provoking article entitled: An ACE Up Your Sleeve -- The surprising story behind adult illness and disability - implications for parents.

You can read her article here.

Interesting. Although my ACE (Adverse Childhood Events) score would be zero, still I'm certain that for others, trauma could definitely be a trigger for autoimmune disease when accompanied by other risk factors such as family history of autoimmune disease and viral illnesses. Check it out.

Sister Julia? Probably Not.

*Blink*

Hey. I think I'm going to survive, people. I feel as though I'm slowly coming to life again.

My first big outing after my neutrophil crash took me to church yesterday. After Mass, I was snagged by Greg. "Hey there! I hear that you think that the cloistered life isn't for you!"

I had to think about that. Then.....HA! Oh, right. I had been extremely vocal about my claustrophobia when I was stuck inside on doctor-instructed house arrest to avoid germs. Anyone that had any kind of interaction with me either by phone or online knew without a doubt that I wasn't happy being in isolation. And I made my opinion of my reluctant reclusiveness very well known to anyone who would listen.

Yes. I would agree with Greg that I wouldn't do well as a cloistered nun. For several reasons......

Even delusions of grandeur as enormous as mine don't include me hanging out with the likes of Saint Therese of Lisieux, who was a cloistered Carmelite nun. 

Fr. O. saw me and chimed in, "Hi! They let you OUT?"

Yes. For good behavior!

He waggled his finger in front of my nose. "Julia. I know you, and that couldn't possibly be the TRUTH," he said with a twinkle in his eye, and everyone around us burst into laughter.

Ah, Father.....of course you're right......

It's so good to be out and about again. Even if I have to tolerate harassment.

How I Arrived Here: My Diagnosis. What's Yours?

A reader asked recently: I think I have read almost everything on your blog, but I have not seen anything about your story of your diagnosis.  Did I miss it?  If not, it might be a good subject for us newbies.

Hm. I know that I've written about this topic before, but I think it HAS been quite awhile.

Here's how I introduced myself and my brand spankin' new blog on MARCH 26, 2008. Wowsers. Five years ago. Seems like yesterday:

I'm Julia - and today is a good day. I'm feeling reasonably well. 

Welcome to my blog. I'm a fifty-something woman living in the Pacific Northwest. Five years ago my life changed dramatically. I went from being an active, independent, working lady to someone who spends much of her time carefully measuring her energy levels and matching activities to those levels. I was diagnosed with a chronic disease.

My specific illness is Sjogren's Syndrome, an autoimmune disease. This disease causes my body to create antibodies which attack my own tissues. These autoantibodies attack the glands which secrete tears, saliva, and mucous. The disease also can cause debilitating fatigue, joint pain, and depression.  Sjogren's is similar to Rheumatoid Arthritis and Lupus. Some studies state that approximately 10% of those with Sjogren's go on to develop Lymphoma. 

If you saw me today, other than thinking maybe that I need a better hairdo and eyebrows waxed, you probably wouldn't suspect that I have Sjogren's. I get around pretty well, don't have green or purple spots anywhere, and usually manage to dress somewhat appropriately. Underneath this mild mannered exterior, however, lurks a seriously cranky woman. I deal with eyes that constantly feel like sandpaper, a mouth and lips always dry, and most significantly, bone crushing fatigue. Occasionally my saliva glands become enlarged and painful, and all my symptoms increase dramatically. Those periods are frequently referred to as "flares". I have learned over the years that when I am in a flare, I am in bed. Period.  

Sjogren's has been an expensive disease. It has cost me my job, several friends, most of my hobbies, and a big chunk of my sense of humor. Thankfully, it has also strengthened my bond with my husband, family, faith, and my closest friends.
 
My blog isn't intended to garner sympathy, or evoke pity. My goal is to provide a place to share information which may help me and others with chronic illness. In exploring information and experiences, one can hope for many more reasonably well days. 

See you tomorrow. 

Well, now. Sounded a bit serious and pompous back then, didn't I? Ah, but that's before I allowed my true doofus-ness to reveal itself. Which didn't take long:

So there I was, sprawled out, head down, feet up, mouth open, with all kinds of dentistry equipment sticking out of my mouth. I have had enough work done on my teeth in the last five years that I have a running gag with the dental staff. They said that I've qualified for a frequent flier program of sorts. 

Gee thanks. Wish that actually translated into a free crown or two. 

Lack of spit does disgusting things to one's teeth.  

Nitrous oxide, however, makes all things tolerable in the dentist's chair. Not only tolerable, but even mildly amusing. I was trying to hum "Yellow Submarine" around at least a pound of gauze and another two pounds of hardware.  I love nitrous.  

The dentist was called away mid-procedure, so I was left alone for a few minutes blissfully babbling and inhaling deeply.  

In my warm fuzzy little drug induced cloud, two large red objects swam in and out of view, capturing my attention. Well, good golly. They were shoes. MY shoes. I had never noticed before how attractive they were, even if they were a dainty size eleven. (I am not kidding - size eleven. I have some serious real estate attached to the end of my legs). Dang, I thought. I have great taste in shoes.  

When Dr. E. returned, I was engrossed in examining every detail of those shoes. Red canvas. White stitching. Elastic curly laces. Who knew they were so interesting??  

As Dr. E. returned to my chair, I shoved one foot near his face and declared, "Would you just LOOK at these shoes? These are great shoes. Wonderful shoes. They're my very luckiest shoes!" 

Well, that's what I said. Actually, what came out of my mouth around all the equipment probably sounded like "wffwwuuuulOOOOOOkshOOOz!!!"  

Dr. E. deftly reached past the floating size elevens and turned down the nitrous. Rats.  

He still asks me where my lucky shoes are each time I visit.

And then there's this post, in which I introduce my BICJ (Bratty Inner Child Julia) for the very first time to my unsuspecting readers:

I am told that everyone has an inner child, and this child represents that side of themselves which is playful, creative, uninhibited, and innocent. 

I want one of those. My inner child is a brat. For example: 

Me: OK. I know that eating lots of sugar and fat will only make life more difficult for me, so I am going to push this shopping cart right past the giant M&M cookies in the bakery. 

Inner Child Me: Grabs a dozen cookies and runs to the checkout. Chomps one cookie before they are paid for. Greets cashier with a mouthful of crumbs.  

Me: Time to get up, Julia.  

Inner Child Me: "No way, dodo head!" Burrows under covers and goes back to sleep. 

Me: Look at this great yoga DVD!  

Inner Child Me: Throws self onto Couch and digs in heels. "I'm not moving and you can't make me. Nanner nanner nanner." Sticks out tongue.  

What is a person to do with an undisciplined naughty inner kid? Put it in time out? How would that work? Withhold an allowance? (Better not mention that one to John...). And we're not going to consider spanking. That would be just plain weird. I may have to consider bribery if all else fails.  

In the meantime, I'm going to have to settle for a stern warning. So listen up, you young stinker inner child: I have had enough, young lady. I will not tolerate any more shenanigans, Missy. Do you hear me? Don't make me stop this car!  

That ought to do it.

Yeah....right about then I let my true colors show. But I suppose these little trips down memory lane don't say much about my actual diagnosis. Which is what the reader really wanted to know and the topic of this post, written back in January of 2010:

Every sjoggie has a different story to share, but here's how it all happened for me. 

In the fall of 2002, life slowly seemed to change for me, and I just couldn't put my finger exactly on what was going wrong. I had a job that I loved, my family was happy and well, and I felt as though I should have been living large and feeling fine, but overall, I felt lousy. Constantly.  

Initially, I chalked my problems up to my age and my pudgy waistline. I began to be more careful with my diet and made an attempt to get more exercise, but in spite of my efforts, I felt as though I was becoming more unwell as the months went on. 

On an annual exam with my family doctor, I had brought along a lengthy laundry list of complaints, and bless her heart, Dr. H. pulled up a chair and reviewed each and every item on my list. My ears were constantly ringing, my eyes and mouth were dry, and my sense of smell had seemed to vanish. I was popping Tylenol and ibuprofen almost daily for aches and pains and the sensation that I was just on the edge of running a temperature. I had no energy to do anything but to go to work, then come home and collapse on the couch. 

And I was cranky as all get out. 

So she ordered lab work to screen for various problems and made a referral for me to see an ear-nose-and-throat doctor and an eye doctor. 

The ENT physician could find no structural problems that would cause a decreased sense of smell or tinnitus (ringing in the ears). My eye doctor noted that yes, indeed, my eyes were dry. She prescribed some eye drops. My labs showed that my thyroid not producing enough thyroid hormones, and I had an elevated sedimentation rate, which indicated some kind of inflammatory process. 

So I popped my Synthroid - replacement thyroid hormone - and tried every brand of eye drops that I could get my hands on for about six months. But in spite of continued discussions with Dr. H., I continued to feel as though I was slogging along through a giant bowl of jello, both physically and mentally. Routine tasks suddenly became difficult. I found myself checking and re-checking my work and second-guessing my decisions. My thought processes seemed to be slowed almost to a halt. I began to carry wads of kleenex in my pockets to mop my face since any small exertion left me sweating profusely and make up and mascara melted away. I knew these spells were not related to menopause since I had my ovaries and uterus removed several years previously and was already taking estrogen. 

I began a very expensive relationship with my dentist after multiple cavities began appearing in my teeth at my gum line. My dentist thought that my dry mouth may be causing the cavities, prescribed fluoride mouthwash and gave me the classic oral hygiene lecture. I also began to appreciate nitrous oxide during these uncomfortable appointments. 

I was tired and miserable, and getting no answers. 

Then one day, my director of nursing took me aside. "So what's going on with your face, Julia?" she asked. 

Excuse me?? 

"Have you noticed that well......you look as though you have the mumps? Here, look." She guided me to a nearby mirror. 

Whoa! No, I hadn't noticed that my face was swollen, especially right in front of my ears. But by then I was too tired to notice if my shoes were on the wrong feet. Or if my hair was purple. I didn't really care. 

"I want you to go home and get this checked out. Let me know what you find out - and feel better!" 

I dragged myself home and called Dr. H yet again. Later, I sat across from her in the exam room and cried. "I feel so awful. I know that this isn't the mumps since I had a whopper case as a kid. What is going on?" 

Dr. H. looked thoughtful. "I am going to have you seen by a rheumatologist. OK?" 

Why? 

"Because you might have an autoimmune disease called Sjogren's syndrome. Your enlarged parotid glands made me think of it. I'm not sure about this, but a rheumatologist will know what specific labs to draw and how to get a diagnosis." 

What the heck is show - show - whatever you said syndrome? Never heard of it. 

"Most people haven't. And I might be wrong, but let's check it out." 

At my rheumatology appointment, Dr. S. explained that I did indeed have the classic symptoms of Sjs: dry eyes, dry mouth, enlarged parotids, fatigue, achey joints, and brain fog. Further labs showed that I had elevated c-reative proteins, positive ANA, and positive SSA/ro autoantibodies, all of which indicated that I had joined the Sjoggie club. She prescribed plaquenil and prednisone and so it all began...... 

It took about one year for me to get a diagnosis, and an additional three months before my medications began to take noticeable effect. And as every Sjoggie knows, a diagnosis does not translate to living happily ever after. The last seven years have been a rollercoaster ride of highs and lows. 

So - what is so therapeutic about having a physician say these magic words, "Your diagnosis is...."? 

It's relief that what is unknown is suddenly known. That you are not crazy, lazy, or a hypochondriac. A diagnosis doesn't make the symptoms of Sjogren's syndrome less difficult, but it does give them a legitimacy of sorts. The first time that I saw the words, "autoimmune fatigue due to Sjogren's syndrome" written in my chart I felt a very strange sort of satisfaction. Heck, yes. I am tired and sick and there IS a reason for it all. 

 So that's my story.

What's yours?

However DID You Know? It's Just What I need!

Hahahahahahahaha!

Thanks to Son and Daughter-in-law for this:

A white blood cell. Perfect.

Cue the Alleluia Chorus

Guys!

My white blood cell count is perfectly within normal range today.

WAHOOOOOOOOOOOOO!

I had my labs drawn yesterday at 8:30am and by 6:30pm, still had no results, which left me fretting like crazy.

I was also a bit miffed at Dr. Young Guy because he had promised me that he would let me know. But just as I was ready to write a post wah wah wah-ing about it all.....I got the great news.

Jumping and frisking and all sorts of silliness commenced. Which left me completely exhausted. But worth every second.

I. Will. Never. Take. My. Neutrophils. For. Granted. Ever. Again.

So the question remains: was this little incident from the rituximab? Was last month's train-ful of mousies the last to arrive at Julia station? And why do I still feel weak and crappy even though my WBC is normal?

Dr. YG and I will discuss this further. But for today.....

Ahhhhhhhhhhhhhhh............................

Waiting....and Waiting.....and Waiting....

Wake up, already, Lulu....

I am not a good waiter. As in someone who is waiting for something to occur. Which is surprising since I've had lots of practice over the last week. You'd think my patience would be developed to zen master levels by now. But.....no.

I've been waiting for my next labs to be drawn. Then waiting for the results. Then waiting for my doctor's instructions following said results. Which (aaarrrrrgggghhhh) were, "Let's just wait and see..."

I've been waiting for the opportunity to stick out my arm for yet another blood draw today. And now I'm waiting yet again for the results, and the doctor's instructions. (I'll keep y'all posted.)

In the meantime, I'm stuck here in the house......waiting.......

I've found all sorts of things that I can wait impatiently for. I wait

• for John to come home from work
• for Lulu to wake up from her nap
• for Bev to drive by the house making silly faces at me after stealthily leaving LEMON COOKIE BARS on my front porch
• for my sister Sue to finally text me her choice of designer shoes to wear at her son's wedding
• for my kids to call and update me on their day
• for the mail to come so I can sift through all the stupid junk mail
• for the Mariners baseball game to start
• for the Mariners to actually WIN a game
• for my coffee to brew
• for John to come home from work
• for the dryer to finish it's cycle so I have towels to fold and therefore have SOMETHING TO DO
• for the rain to stop so that Lulu will actually go outside and do what she really needs to do (ahem)
• for my high-school-aged neighbor to come home from school so I can return his cheerful wave and hear him whistle as he heads inside his house
• for Terese to come get me to escort me to the lab, even though she would rather go to a Kab, which is what I mis-spelled as we were texting
• for Lulu to wake up from her nap.......and.....
• for John to come home from work.

My life is one long string of exciting events. Yawn.

Gee. I wonder when John will be home from work?

Neutrophils are Amazing

Take a look at this:

See that? It's an AWESOME electron microscope picture of an actual neutrophil devouring a nasty anthrax bacteria. Phagocytosis is a wonderful thing.

More. I want more neutrophils, people. Just like this one....minus the anthrax. I'm guessing a million or so should do it. By Thursday, which is when my next labs will be drawn.

Have You Used These Punctal Plugs?

Image found on MayoClinic.com. 

Reader Theresa is wondering if any of Reasonably Well's readers have had experience with a particular brand of punctal plugs: EagleVision Superplugs.

If you have used these plugs or have used other brands, share your story here in the comments, or send me your email address and I will forward it to Theresa.

You can read more about punctal plugs and cautery here: Punctal Plugs and Cautery in Sjogren's Syndrome, and here.

A Simple Request

See? Isn't this porch just begging to be danced upon? 

I've spent the whole weekend avoiding infections on "house arrest" since my white blood counts bottomed out, and gee whiz. This is getting old. And it's only been for a few days! My friend Bev called to cheer me up.

"Girl. Is there ANYTHING that I can do for you? Anything?"

Well. I had to think about that. Aha. I know, Bev! See the main thing here is that I'm bored bored bored bored bored.

"Don't you have a whole closet full of movies?"

Yeah.

"And is your computer working?"

Yes, it is.

"And don't you have marvelous friends that call you and have interesting conversations?"

Hoo boy. Bev had just told me all about her rooster and his....um....issues with lady chickens. She has the coolest chicken coop ever that they call Cluckingham Palace.

Yes, Bev, I'd have to say our discussion today was.......unusually entertaining.

"Well, then."

I KNOW! Hey, girl! What I need is some live entertainment, not something on my computer or on the tv. Why don't you come on over, I'll sit on the couch inside the house and watch out the window while you do an interpretive dance on my front porch? How cool would that be?!?

*cricket cricket cricket* The phone was curiously silent.

Wait. I thought you said that you would do anything for me.

"Girl, I would. REALLY. But if I were dancing around naked on your front porch....."

Ahem. I don't recall saying anything about nakedness, Missy.

"....then all these spectators would come over and cause a traffic jam in front of your house. And then somebody would call the police because there would be so many people there watching me dance. And then all the men there would try to talk to me and get my phone number, and then (her husband) would be all upset. And a fight would probably break out. Honestly? I just don't think it would work."

OK. I think the only person in the world that would make the leap logically between dancing and dancing NUDE would be my friend Bev. Which is why I love her to death.

Ahhh. Good friends are such good medicine. I hope my neutrophils agree.

Not What I Had Planned

Well, guys.....I have to admit that Friday's adventures caught me by surprise. Want to hear all about it? Got some time? It's kind of a long story, so make yourself comfy. Maybe pour yourself a cuppa.

It all started a few weeks ago, as I was assessing my recovery from the rituximab infusions. For the first dose in the cycle, things went as planned. Then the second dose two weeks later was infused uneventfully. I followed the prednisone dose schedule as prescribed by Dr. Young Guy, and as I reached the point in tapering from 30 mg to 15 mg, began to sense that things just weren't.........right.

I had been cruising along feeling my energy levels rise right on track with my previous three rituximab cycles, but then inexplicably, I seemed to become more tired, instead of less.

I thought that I had experienced fatigue in just about every form imaginable, but this was strangely different. It's hard to describe, but this felt like a weird combination of weakness, drenching sweat, and fatigue that I have never experienced before.

On a follow-up exam with Dr. YG, I voiced my concerns as I sat in his office quivering with exhaustion and soggy with cold sweat. He ordered labwork and I fully expected everything to come back normal, just as it had three weeks earlier. Dr. YG reassured me that we would figure out what was causing me to feel so crummy.

I got a call from the clinic the next day: "Julia. Your white blood cell count is very low. Come back to the clinic and we're going to draw more blood samples."

It was Friday afternoon and my doctor was leaving for the weekend, but he wanted to have me monitored and further assessments done before he left. He sent me to the emergency room for yet. more. labs. and to be checked thoroughly for any kind of infection that may prove to be a serious issue with my immune system so weakened.

So I called Terese in a daze and asked her to drive me to the hospital. John was at work and I didn't trust myself to drive. I remembered that John had some face masks in the garage that he used when spraying our fruit trees for bugs, so I grabbed a new one and slid it on. I wasn't looking forward to walking into a hospital waiting room and it's germy population, and thought perhaps I could put up some kind of barrier between me and the bugs hanging around other sick people there.

She expertly maneuvered us through Friday rush hour and I found myself walking into the ER in a daze and shortly thereafter found myself in a hospital room, the door of which was sporting a big sign: EVERYONE must wear a mask before entering.

Everyone, including John, who asked for a handlebar mustache to be drawn on his mask. Spiffy.

After several hours, and satisfied that I didn't have an active infection, the ER docs elected to send me home with strict instructions to isolate myself, to monitor my temperature, and to return should I show any symptoms of an infection.

Which is what I am doing.

As I'm twiddling my thumbs while resting, (Boring. Very boring.) I'm also wondering WHY my white blood cells -- specifically my neutrophils -- took such a nosedive. So are my doctors.

The weeks ahead and follow up hopefully will provide answers. At this point Dr. YG is thinking that this is possibly related to my rituximab, although he tells me that this would be a very unusual side effect of this drug.

Yeah, well.....that's me. Unusual.

There's other potential causes but I'm not allowing myself to go there at this point.

As Dr. YG and I finished our most recent conversations he sighed. "Well, Julia......you're always so........interesting."

Um. Thanks. I think.

So I'm hanging around on the couch, watching baseball and old movies. I'll keep y'all posted.

Saturday Smile

Hm. This reminds me of another doggie, who shall remain anonymous, but whose initials begin with Lu and end with lu.

Image found here.

Dr..........What's His Name?

Excellent foggy image found here. 

Yesterday, I showed up for a doctor's appointment and when checking in, could NOT for the life of me remember my doctor's name! Good grief. Brain fog strikes again.

Have you experienced a foggy brain on occasion? Happens to the best of us, unfortunately. You can read more about brain fog in this Patient Information Sheet published by the Sjogren's Syndrome Foundation, here:

What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor. Continue reading here for more information including suggested strategies for coping, resources, and books. 

It appears that I'm not the only one trying to fight my way through the fog these days. Check out this interesting and informative post by AutoimmuneGal that offers seven tips for managing brain fog, found here.

Life, Fatigue, and Your Comments

As I read the comments from my blog entry entitled Life and Autoimmune Fatigue: Things Have to Change, I was struck by their authenticity and eloquence.

My readers ALWAYS have valuable insights to share about their journey with autoimmune disease, but I thought these in particular were exceptional, and deserved to be re-posted:

Sue said...
We like to kayak and bike so we have a tandem mountain bike and a tandem sea kayak. We can go on long paddles or bike rides around town and if I need to rest then I stop paddling or peddling for a while. I actually enjoy using the tandems because before sjogrens I was too focused on trying to keep up with him and not enjoying the scenery. Now I can't be left in the dust.

 Blogger Mama said...
I try tweak my activities so I am still doing them, just maybe not in the way I was used to doing them originally. So instead of standing for hours baking with my daughter, I bought a stool to sit on instead.
     It's all sort of like eating a weight watchers chocolate cake instead of Aunt Betty's triple bypass chocolate cake. It's still a way to enjoy chocolate, just in a slightly different way than you're used to. :o)

 c little said...
For the most part I'm doing the duck thing. Calm on the surface, but thrashing and sniveling inside when my inner teenager comes up with a great idea that my outer self just can't accomplish.
     I've learned to modify my expectations and be more at peace with the fact that my projects will all be 'in progress' indefinitely, and I have learned to just laugh at over-acheiving organized people's expectations (sometimes just inside, because those people are really pretty humorless). That will never be me, so why agonize? Life has changed, and I choose to spend my energies on things with true value to me and mine, and not feel guilty for things I cannot control.
     Your blog and the commenters are really helping me with that. :)

 One Woman's Journey said...
Oh my
how this post helped me
"hey I am not the only one"
always so energetic, more then most in my late 70's.
Hey built 3 homes in the last 5 years and relocated to a cottage.
I garden, write, photography and stay busy since I am solo.
There are times the fatigue is so horrible - that I have thoughts
there is something else wrong
besides the Sjogrens-Lupus- Ra that I was dianosed with 5 years ago. Only the last couple of years really bothering me.
Always a healthy lifestyle, diet good and weight 108 lbs, everything fine but finally realize I have to slow down.
Thank you for your post and comments. Ever thankful nothing really bad until middle 70's so I am very fortunate...

 Christine said...
The process of planning our wedding with my fiancé has really helped me learn how to manage my lifestyle better and tweak what I can and cannot do. the good part is that I have discovered that the process of limiting myself when needed cuts down on the amount of time I am forced to.
     I write this as I am confining myself to a day of rest 4 days before my wedding!

 Kelly said...
Luckily, I have been able to hire the most difficult house and yard work done, and while it wasn't hard to give up scrubbing toilets, it's still hard to stay out of the yard. One session of pulling weeds can make my hands unusable for other activities for a few days and I have to keep reminding myself of that and not pull weeds, but I can plant things here and there, deadhead flowers, prune tomato seedlings, etc..
     Also, luckily, I've always had a wide variety of interests that have varying levels of energy requirements. Low energy days=knitting in front of an indie film from Netflix. If something requiring high energy falls on a low energy day and can't be avoided, I simply force myself to do it as well as I can knowing I will pay later. Then I pay. Or I just say no and accept the consequences of that decision.
     Finally, I've always had energy levels that fluctuated more widely than the average bear, so I never knew if I was going to have a low, normal or high energy day at least as far back as high school. I never experienced that sudden onset of unusual fatigue that people talk about, it has been my constant companion ever since I can remember. Sleeping 8-9 hours per night was the standard and the only way to cope.
     Example: when I was in college and interested in studying Architecture and found that it wasn't possible to get through the program without spending insane amounts of time in the labs and pulling all-nighters, and that this was built into the program and expected of all students, I changed my major. I knew I was going to set myself up to fail in that program, or get really sick, because I couldn't sustain that kind of energy output and sleep schedule interruption. Back then, I didn't know WHY I was like that, only that I was and other people seemingly weren't. I picked something at which I could succeed that still challenged and interested me and graduated with honors and mostly healthy.
     You make adjustments, as Julia says she has done. There's that old saying about closing doors and opening windows. Also, I try to remember that EVERYONE has limitations and has to make choices and adjustments in one way or another even if it doesn't seem that way. No one has unlimited stores of energy or time. I try to focus on what I CAN do and do well rather than what I can't.

 Peggy said...
Like Julia I fought it tooth and nail. I wasn't going to get sick like OTHERS! I knew I could fight it because I ate well and was an avid swimmer...I had perfect sick leave record when I retired for heavens sake and I wasn't going to be like others I read about. HA!
Until sleep deprivation brought me to my knees and senses. Sleep is a priority now...not clean toilets.
I do what I can each day...never stopping for a nap but proceding slowly and paying attention to what my body is telling me right NOW.
It's aggravating because it takes me twice as long to do anything...including something simple like internet searches;sometimes I just give it up because I can't concentrate and I am just plain tired.
I too discovered baseball (go giants!) and don't do a thing after 5 pm but search for baseball on tv. Exercising (swimming) is my first priority every day because I feel normal (not sick) when I am in the water but it takes up half the day. I feel many times that I am just wasting time and I need to be more productive like the good old days - full of pep right up to 10 pm. What the heck happened?
I thank Julia for her blog...it is rooted in reality without too much mind blowing scary technical stuff; if I need serious stuff it's there too when I need it. Besides I love the serene pictures she posts.

 LM said...
THIS is (and remains) my biggest problem. The pain, no sleep, crushing fatigue, nausea...Okay, I can soldier through that. It is the fact that I can't do what I used to do that bothers me the most. Matter of fact I'm typing this from my recliner. I want to do something else right now, but can't. I'm still learning, VERY slowly, but I'm learning that if I don't take care of myself and push it too hard, then I'll miss the really important things to me. I plan my week carefully and try not to schedule too many things in one day or week. Finding downtime and an afternoon nap is almost essential in helping me get through the day and feeling okay.

 Annette said...
I just wish that I could do what I want to do, but to deal with it I have been convincing myself that I want to do what I am doing. It's working pretty well for me but not for my husband who picks up the slack.
     Continuing to work for the past 30 years was like an endurance marathon. I was so used to working I thought I could do it forever but things changed when the company was sold. My contract ended and now, like Lene said in her post, I have more time and energy for friends and family.

AutoimmuneGal said..
This is such an important topic and thanks for always writing so honestly about your experience. It really resonates with me.
     I've gotten better at rolling with the punches of fatigue, but I occasionally find myself "feeling lazy" for needing to rest. Because when the fatigue hits hard, I am too exhausted usually to read, write, or move for that matter. I can watch movies and tv and sometimes talk on the phone. Sometimes it feels like I am standing in place in order to start moving forward again. Afternoon naps are essential and my husband often reminds me to get off my feet especially when we have multiple activities planned in a day. We always leave time for me to rest before going out with friends or between outings. This seems to have cut down on being hit on the head with fatigue.
     Like you, I have become a major sports fan in my new autoimmune life! I love watching football, basketball, baseball on TV and even soccer and golf. The competition and excitement of games almost makes me feel like I am doing something active, while just laying on the couch. My goal for the fall is to feel well enough to make it to football game and actually be there in person to watch.

stephanie said..
Thanks Julia for putting this question out there. All the comments have been helpful and eye opening. In my must-sit-down times, when I want to be doing, I do feel like I'm being lazy and not contributing. These comments have also made me realize that I'm not the only one with these issues. I guess this will just be another in-progress deal, and I'll have to be creative in findings ways to cope in a positive way. As my husband says: My body is FLUID and my life is FLUID! Thanks again.

ShEiLa said..
Tough. For. Sure.
     I agree with you Julia... Modification is key while learning to accept new limitations. I am learning how...Gradually my family will too.
     I am thankful for the support I find here... I am not alone.

Well said, everyone. Thank you for your willingness to share your experiences with me and others -- it helps me so much more than anything that comes in a pill bottle.

I'm Slipping

Medieval torture device slip found here. 

As much as I wah wah wah about my issues with Sjogren's syndrome, not all of my life's problems can be blamed on autoimmune disease. Unfortunately. How many of you recall my infamous "Julia drank too much wine and walked right out of her half-slip in front of a room full of priests, a bishop, and notable Catholic honorees" incident? Anyone? Everyone? 

I will never live that one down. Never. And, I suppose I don't really deserve to either. 

But as I'm choosing a dress to wear for my nephew's wedding in a few weeks, I am determined that regardless of what dress or shoes I choose to wear, that my undergarments WILL REMAIN WHERE THEY SHOULD BE. No matter what. Terese thinks that I should just use the same slip and add duct tape. Hm. 

So I've been looking around at full slips, and my goodness. Finding a regular silky slip with straps in black and in my size is almost impossible! At least it seems that way. Everything that I've seen so far is made of spandex or some other squeeze-you-till-you-can't-breathe material. In desperation, I bought one and decided to try it on at home. 

I finally worked up the courage to try to get the thing on the other day, and here's the blow-by-blow account as I described this experience to my sister via text message: 

Oh. My. GAWD. Have you ever tried to put on a Spanx full slip?!

I have heard not so fun stories about this garment..

WHAT was I thinking?! It's one thing to put it on but I can't get the stupid thing OFF! 

So do I wait for John to get home or should I call 911 to get out of this thing?

Hmmm......

Or maybe I should go over to Terese at the church office and ask her to help. 

Can't u just see it.....

Go with the Terese option!!

Yeah. I'm thinking that this could be good. Especially if Father O. is there. 

I got a less industrial version of Spanx.

The kind with legs? I wouldn't even try those. I would have asphyxiated myself by now. 

As it is, this slip is one long black tube of torture.

But the girls on the labels wearing them look so........happy.

Maybe I should just learn to live with this thing wadded up under my bra FOREVER.

Like my friend Pam at work says, "It's all got to go somewhere!"

Yeah, well....right now I have no neck. 

THAT's where all mine is right now. 

And my ankles.

Maybe I should try mine on again tonight to feel your pain..

**cue 1812 overture** FREE!!!!!!!!

Well, that's a relief. 

Girl. You have no idea.

That's it. Slip or no slip, I declare this wedding a Spanx-free zone.

Oh, (our other sister) has already told me that she's a Spanx rebel. 

Yes!! Anti-Spanx solidarity FOREVER!! 

Bring on the wedding cake...

As I returned the slip to the store for a refund, I returned to the lingerie department and realized that my search would have to continue elsewhere. Rats. 

Maybe the duct tape isn't such a bad idea after all.  

Life and Autoimmune Fatigue: Things Have to Change

Thanks, buddy ol' pal....

I received this question from reader S. recently, and it's a difficult one:

This last month I have been struggling with sudden fatigue, different kinds like you wrote about on your blog. YOU know what I mean. 

This is new for me. I have been unable to do yard work like I want the past several weeks. I have done a little at a time. I hear friends talk about doing this and that. It has made me depressed that I want to do all these things, but as much as I want to, I just can't. Last night I could hardly get out of my chair. I realized today at work (which I still enjoy and can do), where I am trying not to cry, that I am grieving for yet another loss.

How do you deal with this lack of ability to do stuff when you want? I just cannot sit around all evening after work. There are things I want to do!

Hm. How to reconcile your desire to be an active busy person with your body's physical limitations? Here's a bit of what I included in my response:

I have had to modify my life dramatically in response to my activity limitations, and I did it very ungracefully. Kicking and screaming. Wasn't pretty. And when I had to quit my job as well, things got REALLY ugly around here! But somehow life found a new balance. I did have to spend some time thinking seriously about activities that I could do that were less energy-taxing, as well as modifying some of my other activities.

Um. To be perfectly honest, I don't think it would be a good idea to hold myself up as an example of someone employing early and effective coping methods.

Early on, as my fatigue began to dictate my activities, I was so exhausted that I really wasn't aware of anything else but the need to crawl in bed and sleep and so it took awhile for me to realize all the good things that I was missing. But eventually the reality of what had happened -- the need to quit working and the inability of my continuing with physically taxing hobbies and interests -- gradually came forefront to my attention. And this is when my tantrums and grieving really kicked in.

You think I'm exaggerating about the conniption fits?

Nope. Initially after my diagnosis, I was so certain that I would conquer this disease and it's life-changing fatigue that when the reality of my limitations and the need to adapt my life became obvious, I struggled harder with this issue than any other challenge that I've ever faced before. As a matter of fact, I was so unhappy with it all that I sought the help of a therapist and began a course of antidepressants, both of which helped tremendously.

So after much dithering, I finally conceded that I needed more butt-on-the-couch time. And I started thinking a bit more (albeit very grudgingly) about what I could do that might make those resting sessions more enjoyable. It was around this time that I was gifted with my wonderful friend, Canon the camera, and photography became a very do-able hobby that I hadn't pursued before.

Another thing in particular really surprised me: I became a rabid professional baseball fan. I've never particularly enjoyed baseball, except when my son was playing Little League. But pro baseball? Nah. Boring....or so I thought.

But in desperation one afternoon as I was flipping through the television channels, (soap opera? Ewww; reality tv? Bleah; old movies? Meh. Seen 'em,) a Seattle Mariners game came on. I decided that it would make for some not terribly annoying background noise and left it on. As luck would have it, that particular game proved to be very exciting and we won. Later I discovered that the game was far more nuanced and complicated than I had thought. Gradually I discovered that I was looking forward to those games and enjoyed learning more about the game and the players.

Huh. Surprising, that.

So. How have YOU dealt with finding less physically taxing activities to substitute for those that you have had to give up?

And The Creativity Challenge Winner Is......

Drum roll, please!

The winners of the Reasonably Well Creativity Challenge 2013 is........

The talented mother/son duo Amy and Cole!

Congratulations! She's wonderful! The hand-felted sculpture of Hydrating Nixie will be created and delivered as soon as she's finished.

Keep an eye out for future appearances of Nixie.

We Salute You....

......Mothers everywhere.

I'm so grateful that I had the opportunity to be a mom to three amazing people.

Donations Made Easy

Thanks to Sarah, who reminded me how easy it is to use the Sjogren's Syndrome Foundation Shop for Sjogren's fundraising feature. Just follow her simple directions below and big retailers such as Amazon will be making donations to the Sjogren's Syndrome Foundation each time you make a purchase:

Easy Fundraising

Want to help raise thousands of dollars each month to fund research and support for Sjögren’s Syndrome?  Now each time you shop online, you can help raise big bucks for the Sjögren’s Syndrome Foundation (SSF).

It’s easy!  Just create a direct link to the retailers that you already use on your bookmark toolbar. SSF supports many but we’ll use Amazon as an example.

How to Bookmark Amazon

Note:  Every time you click the fundraising link, Amazon donates a whopping 8.5% of your purchase to the Sjögren’s Syndrome Foundation!

1. Click this link, or copy & paste it into your browser window: www.sjogrens.org/shopforsjogrens. 
2. Scroll down to the section with Amazon information. (Note that the same procedure can be used with any or all of the merchants listed on the Shop for Sjogren's page).
3. Left click and drag “follow this link” up onto your bookmark toolbar.
4. Depending on your browser, rename it “SSF” or, left click “properties” and type in the new name.
5. Now, when you shop, use this Amazon icon on your toolbar for quick one-click shopping!

Every dollar counts…

Curses

It appears that someone has hacked into my twitter account.

Good grief.

If you regularly follow me on twitter, you won't find me there for a bit. At least until I get this figured out.

Dumb stupid hackers.

Sjogren's Syndrome Foundation Patient Education Sheet: Difficulty Swallowing

Gainful Pain

I realized the other day that I was frequently using a stock phrase to reply to this question: "So what's it like getting rituximab?"

I find myself saying simply, No pain.......no gain. Meaning that the weeks following a cycle of infusions are not exactly a walk in the park, but grinding my way through the resulting leaden fatigue and crazy prednisone burst and taper symptoms are worth every minute once my energy levels begin to rise. Ahhhhhh.........

No pain, no gain used to conjure up an enormously different scenario for me, back in the days of Jazzercise classes (My goodness. Are those still around? Or is it all Zumba now?) and four mile morning walks; when the gainful pain took the form of sore muscles and sweaty leg warmers. Yes. Leg warmers. Sheesh.

I NEVER looked this good in my leg warmers. There's a reason that a picture of me wearing them isn't in existence. Image found here. 

But rituximab pain isn't really physically painful at all, just frustrating and boring and exhausting.

Does that qualify as real, legitimate pain?

Creative Challenge Finalists Revealed!

It is my pleasure to announce the eight finalists from the Creativity Challenge! If your artwork is pictured below, and you would like your fabulous finalist prize of a Sjogren's syndrome awareness bracelet, send your name and mailing address to: juliaschulia (at) gmail (dot) com. I was blown away by the thought and talent that went into these designs! Below each image is the description that each artist attached to their entry.

Here they are, in no particular order, and congratulations!

Attached is a copy of the drawing that my son did for me. 

At first it was just the water drop with arms and legs. Then he added the blue. 

I told him that it needed a cape. Every super hero should have a cape. 

When I told him that 9 out of 10 people with Sjogren's are women and that maybe "it" should be a girl he added the bow and eyelashes. The super hero boots were added last. 

Nixie is actually a German name meaning "little water sprite"- how cute! 

Anyway...here she is. Enjoy. 

Are the finalists going to be determined over drinks in the Bearded Dog Pub? 

Here is a series for you I call Moss Woman.

The crystals are supposed to represent moisture, like the water bottles we carry around, the eye drops, every thing that our bodies lack and crave. Please disregard the hand with dry skin in the background.

Don't know if this is what you had in mind but reflects the way I feel most days.

My image is a solar flare.  To be brief, I couldn't think of any image that would seem universal to Sjogren's - the only symptoms that every Sjoggie I know has is fatigue, and a close second is brain fog, and I have no idea how to visualize these challenges.  I also don't know of any test, treatment, or device that would resonate with all Sjoggies.  So, I thought instead of what SjS means to me, and since the sun was my primary trigger (and remains a constant threat for life), a solar flare seemed perfect.  It symbolizes both a burst of energy which we usually consider positive but for us can precede a flare, as well as a destructive, uncontrollable, and barely-predictable force. 

I got down to business attempting to take this task on. And I found that I just couldn't follow the rules! Arg! I had a design busting through all the other ideas, rumbling around in my brain, and it just wouldn't stop until I got it down on paper. It turned out that I loved it SO much that I didn't have it in me to create anything else. 

(Note: I thought this design was fantastic! So we made it a finalist -- although the artist is correct in that she didn't follow the rules specifically, so won't qualify as the first-prize winner. Sorry. - Julia)

A magnifying glass, you know, the kind with the handle that the inspector carries.  Because we are always trying to find our way through this illness and looking for clues from our bodies.

 The idea is a lapel pin that is green and in the shape of a leaf. The single leaf is a symbol of happiness, so would be a reminder to not let the illness rob us of our happiness.

It's going to be hard to choose one winner, but we're on it. And yes, I'm thinking adult beverages served in the Bearded Dog Pub will be involved.

The winner will receive a handmade felted wool sculpture of their design.

Stay tuned!

Save My Bings

If you were an annoying little cherry-eating thief bird, would this keep you and all of your little larcenous buddies out of my cherry trees?

 It's a plastic hawk that swings in the wind and has a piercing stare. 

So that these little green fruits can get all deep red and juicy and sweet and delicious? So that they can be devoured by John and me?

Please say yes. We have three beautiful trees that are loaded with fruit this year. Last year, the birds ate every. single. cherry. off of our trees.

Lulu says she'll keep guard, but there's only so much one little schnauzer can do.

BMC Medicine: Novel Aspects of Sjogren's Syndrome in 2012

Check out this amazing illustration found on the first page of the review. Yes, I can definitely equate a cactus with an Ro/La autoantibody. 

This review entitled Novel Aspects of Sjogren's Syndrome in 2012 was published in the online journal BMC Medicine  in May 2013 as part of their Cutting edge: issues in autoimmunity series:

Authors and their affiliations: 

Angela Tincani1, 2*, Laura Andreoli 2, Ilaria Cavazzana 1, Andrea Doria 3, Marta Favero 3, Maria-Giulia Fenini 4, Franco Franceschini 1, Andrea Lojacono 5, Giuseppe Nascimbeni 6, Amerigo Santoro 7, Francesco Semeraro 6, Paola Toniati 1 and Yehuda Shoenfeld 8

1. Rheumatology and Clinical Immunology Unit, Spedali Civili, Piazzale Spedali Civili 1, 25100 Brescia, Italy
2. Chair of Rheumatology, Department of Clinical and Experimental Sciences, University of Brescia, Spedali Civili, Piazzale Spedali Civili 1, 25100 Brescia, Italy
3. Rheumatology Unit, Department of Medicine, University of Padua, Azienda Ospedaliera di Padova, Via Giustiniani 2, Padua, 35128, Italy
4. Rheumatology Unit, Vallecamonica Hospital, Via Manzoni 142, Esine (Brescia), 25040, Italy
5. Obstetrics and Gynecology Unit, Spedali Civili and University of Brescia, Piazzale Spedali Civili 1, Brescia, 25100, Italy
6. Ophthalmology Unit, Spedali Civili and University of Brescia, Piazzale Spedali Civili 1, Brescia, 25100, Italy
7. Pathology Unit, Spedali Civili, Piazzale Spedali Civili 1, Brescia, 25100, Italy
8. Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center, Sackler Faculty of Medicine, Tel-Aviv University, Tel Hashomer, 52621, Israel

From the introduction:
"....In the current review we present the complexity of SS from different points of view, reporting on the current cutting edge of knowledge about this disease. This multidisciplinary approach to SS is the result of a symposium held in Brescia (Italy) in June 2012, involving several specialists who take care of different aspects of the diagnosis, management and therapy of SS."

You can read the entire review here. It is very lengthy and technical, but take the time to skim it.

Why?

Well, aside from gaining additional information about our disease and cutting edge treatment, you may want to read it and be reassured that there IS being significant study and research conducted into Sjogren's syndrome and autoimmunity in general.

Which is not to say that the current level of research is enough.

Reading this made me feel enormously satisfied to see an acknowledgement of the significant complexity of Sjogren's syndrome and the need for a multi-discipline team of providers to adequately meet the needs of a patient struggling with this disease.

The next time a physician or health care provider tells you that Sjogren's is "just dry eyes and dry mouth", print out this hefty 18 page PDF and slap it on his/her desk.

Desk. I said DESK, people.....

Justify This

I wanted to clarify my reasons for writing yesterday's post. I hope that no one assumed that I wanted to boast about my insurance coverage.....

What I really wanted to comment on was the enormously conflicting emotions that I felt when I looked at that statement; the first being relief that I wasn't on the hook for $56 thousand dollars and the second gratitude to John for providing insurance that was on the hook for that outrageous amount.

The third: I was incredulous that the cost was so staggeringly high. How does that happen? Why does that happen? Where does the money go?

And then the biggie.

Do I deserve this?

I mean, I didn't do anything -- at all -- to merit being the recipient of a therapy that could conceivably end up costing hundreds of thousands of dollars in the long run. I simply had insurance that covered it and a doctor that would order it and a clinic that would administer it.

That's all.

Yes, I got a good result from the medicine, but then what did I do with that good result? I sit around on my butt and write about flamingoes and wah wah wah about my weight. Is that worth $56 thousand dollars? But then, what is worth $56 thousand dollars? Is anything that I could do that would be worth $56 thousand dollars per ONE dose of rituximab?

So then this question presents itself: Should someone or something decide who DOES deserve expensive therapies? And how would that decision be made? What criteria would be used and how would I feel if I didn't meet it?

Too bad I only have the questions.........but no answers.