Reasonably Well

When You Want a Second Opinion...

juliaschulia@gmail.com — Sun, 29 Jan 2012 00:30:00 PST

I have received several letters recently in which sjoggies have confided to me that they are less than pleased with their physicians, for a variety of reasons.

Been there. Experienced that. It's uncomfortable.

We all know that a good relationship with our healthcare provider is vital to receiving the best possible care in the treatment of any disease - autoimmune diseases included. Sjogren's syndrome frequently is not diagnosed for five or six years from onset of symptoms, and so many sjoggies find themselves being labeled with a huge variety of diagnoses which may or may not be accurate. And at that point when serious doubt arises in the patient's mind about those diagnoses, it's a good idea to seek another medical opinion.

Asking a physician for a second opinion can seem to be a daunting task. Initiating a discussion with a healthcare provider which insinuates that you are somewhat skeptical of their diagnosis/treatment plan is often necessary but also can be painful.

So I was interested to read this from the U.S. Department of Health and Social Services' newsletter:

This sheet was written in 2008, but the information it contains is still useful. Confident and competent physicians will be comfortable in assisting you in getting another opinion. Those that would question your need to do so would raise a red warning flag, in my opinion, and a negative or confrontational response would reinforce the need to seek care elsewhere.

It's your body. It's your health and your life. So go find the care that you deserve.

Sjogren's Syndrome Foundation Fact Sheet: Tips on Obtaining Disability Benefits

juliaschulia@gmail.com — Sat, 28 Jan 2012 00:30:02 PST

The Sjogren's Syndrome Foundation has published another of it's excellent Patient Fact Sheets on a difficult yet necessary topic:

I Heart This Stuff

juliaschulia@gmail.com — Fri, 27 Jan 2012 08:11:40 PST

Now that the house is completely de-Christmas-ed, yes it took quite awhile, but who cares....

Anyway. Things were looking pretty bare in here. I was lying on the couch a few days ago wondering what things I should drag down from the attic to replace all the holiday ~~junk~~ decor. I knew that typically, I would go looking for my box of Valentine's day stuff and scatter hearts and pink and red ~~junk~~ decor around the house. Not as many things as for Christmas, of course, but a string of lights on my kitchen windowsill, and a few knick knacks, some coffee mugs, and then the box of appropriately heart-themed kitchen towels.

I love kitchen towels.

But as I lay there, I was having one of those moments when I just felt as if nothing was worth the effort. I had taken a shower that day, and putzed around the house a bit, and broke out into a sweat just from those simple exertions and so was flopped on the couch feeling sorry for myself.

John happened to come home from work right about then, and after our usual how-did-your-day-go exchange, I sighed and told him that I was going to forego the Valentine's ~~junk~~ decor this year.

It could be that I just imagined it, but I thought I saw a brief moment of slight disappointment cross his face.

"Sure, hon. Whatever you think," he said. And headed upstairs to change out of his work duds.

I thought about that while looking up at the living room ceiling from my couch perch. Did I really not have the energy to put a few little seasonal things around the house? Or did I just not want to bother?

Could be a little bit of both.

But it really hadn't occurred to me that in keeping up those little day to day things I was preserving just a bit of normalcy in our house. And that John might appreciate that. Goodness knows so many things are really not what we used to consider normal around here.

Well, gee. Thinking outside of my own little sphere of emotions? Now there's a concept......I guess I've been very focused on myself lately. Not without some legitimacy, after all, but still.

If putting out a few seasonal things makes our home look and feel like it always has - comfortable, and ours - well, then maybe it's worth the effort, I decided. For not just my sake but also my family's.

So today I went up to the storage room in the attic and noticed, not for the first time, how neatly everything was packed away and arranged in there. It's not my doing - never has been. But John is a genius about packing and maneuvering boxes of ~~junk~~ important seasonal decor into the most tidy and convenient manner possible. I felt ashamed at my earlier decision to abandon putting my hearts out on display when I saw the box marked Valentine's Day sitting squarely in front of me. It was so simple to just grab the thing and bring it downstairs.

I took my time and examined each little thing before deciding to put it out. What fun memories they all had. These name cards had been given to us when we attended a Valentine's Day dinner at church.

I've had these mugs forever, and I love their bright red color and the way they feel in my hands:

I wrap my breakable items in my seasonal kitchen towels, so when I unpacked my mugs, I also unfolded my towels:

I decided, as I had for Christmas, that I would only put out my absolute favorite things. And so I did.

Yes, I did end up back on the couch mopping perspiration, since before I could put those ~~junk~~ decorative items out I needed to clean and dust underneath first, y'all know how that goes.

After I was done, I felt tired but really good.

Finding the line between doing too much.........and too little is really hard sometimes, isn't it?

I'll Take It

juliaschulia@gmail.com — Thu, 26 Jan 2012 00:30:03 PST

Guys.

You know how I'm always blabbing about my struggle with my bratty inner child? Well, specifically with BICJ to rein in her tendencies to eat everything and anything that is bad bad bad for me within a twenty mile radius.

I got up this morning and before I even stepped foot out of bed, I firmly resolved that today I would go shopping to find really truly GOOD food. Not just good FOR me, but good tasting, too. I knew that a new grocery store had opened in town and I thought that I would check it out.

I'm glad that I did. It's an interesting store, part of a local chain, which specializes in local and organic products. But they also carry some national non-organic brands as well. It's a nice mix of a "nuts and berries" and "the local chain grocery store" kind of place.

I strolled around the store picking up fruits and vegetables and feeling pretty smug about my choices.....and I decided that after making a really good wholesome dinner, that I would indulge in a dessert: one piece of excellent chocolate.

I was drooling all up and down the candy aisle, when a perky salesgirl asked if she could help me. I told her that I wanted to choose one - just one - piece of to-die-for chocolate.

"That's easy!" she replied, and grabbed a bar of organic chocolate off the shelf and began to unwrap it.

"This is my fave. Want a taste?"

I looked at her with amazement. Then slowly took a small corner and began to nibble. Mmmmmm..........she was right. What a great mix of chocolate, and salt, and nuts.

"So? You like?" she grinned. "Have some more!"

Epic. Win.

And The Beep Goes On

juliaschulia@gmail.com — Wed, 25 Jan 2012 00:30:02 PST

Beans. It's What's For Dinner.

John has a very minor hearing loss. It's at the high end of the hearing spectrum. And this has caused me no end of grief over the past few weeks.

So I have been hearing this tiny muffled high-pitched beep over the past month. It happens only sporadically, so whenever I hear it, I perk up my ears and ask John, Hear that?, to which he always replies, Nope.

Of course. He can't hear it. Or anything else up there in that squeaky high sound universe.

So I chase around the house listening and listening......and after I have given up in disgust and return to whatever I was doing..........beeep.

Grr.

DID. YOU. HEAR. THAT? I snarl.

Nope. Calmly.

In response to the stress, I'm beginning to develop a twitch. I imagine I hear that beep in my sleep. I've had John dig through every electrical or battery device in the whole house looking for the beep source. We've replaced all the batteries in the smoke detectors and the carbon monoxide detectors.

I've dug through the kids' closets looking for abandoned battery powered toys or electronics. I've searched in all the sofa cushions looking for something - anything- that could beep.

I've begun listening suspiciously to the dogs. Yes. It's come to that.

And still.......beeeeeeep.

I have tried to guess it's location in the house and I swear it's moving. Sometimes I am certain that it's coming from the laundry room, other times it simply HAS to come from the den. Or is it upstairs?

Where are you, you wretched noise?

Curse you, you BEEEEEEEEP!

This has gone on far too long. It feels like a kind of water torture - I never know when the beeep will sound. Or from where. AND NO ONE ELSE CAN HEAR IT.

I must have scared John when I came close to erupting into violence last night after his now-expected Nope response to the beep. He looked at me with some alarm as I told him at point blank range through gritted teeth and slight frothing at the mouth that he simply. must. find. the. source. of. the. beep.

Or things could get ugly.

He sighed, put down his paper, crossed his arms over this chest and listened intently.

Silence.

Nothing. Nada. No beep.

He looked at me. Hear anything? he asked.

AAAAARRRRRGGGGHHHHHH!

So we sat down to dinner. I, by this point, had degenerated into a paranoid idiot, mumbling into my calico hamburger and bean casserole with a twitchy left eyelid.

It's got to be somewhere....... Dumb stupid beep.....I'm not imagining this. I'm.....not.....crazy......Must....find.....

Beeeeep!

John put down his fork. Hey! I think I heard something! He made a beeline for the garage and within five minutes, FIVE STINKIN' MINUTES, had discovered the source.

I was torn between overwhelming relief and exasperation. Five minutes? It took him all of five minutes to find a beep that he could only barely hear?? And that I had been chasing around for a month??

Who knew that our cable box located in the garage had a BATTERY? And that it needed occasional replacing? What a relief. That is, until we noticed what a strange shape and size that battery is. And that it will take another TWO WEEKS after ordering until it is delivered.

TWO. MORE. WEEKS.

Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

More Autoimmune Research

juliaschulia@gmail.com — Tue, 24 Jan 2012 00:30:02 PST

I read this latest research update from the National Institutes of Health with great interest.

A recent study conducted by NIH/National Institute of Environmental Health Sciences/University of Florida Gainesville determined that an alarming 32 million Americans have autoantibodies that target their own tissues. The study is the first of it's kind in that it looked at a nationally representative sampling of people carrying a positive ANA.

Although positive ANA titers are common in autoimmune disease, the presence of autoantibodies alone does not indicate that the person will go on to develop autoimmune disease.

The study is important in that it will serve as a baseline for future research into the causes of autoimmune disease:

"Previous estimates of ANA prevalence have varied widely and were conducted in small studies not representative of the general population," said Frederick Miller, M.D., Ph.D., an author of the study and acting clinical director at NIEHS. "Having this large data set that is representative of the general U.S. population and includes nearly 5,000 individuals provides us with an accurate estimate of ANA and may allow new insights into the etiology of autoimmune diseases." The findings appear online in the Jan. 11 issue of the Journal Arthritis and Rheumatism.

The study reached these conclusions:

A multi-disciplinary team of researchers evaluated blood serum samples using a technique called immunofluorescence to detect ANA in 4,754 individuals from the 1994-2004 National Health and Nutrition Examination Survey (NHANES). The overall prevalence of ANA in the population was 13.8 percent, and was found to be modestly higher in African-Americans compared to whites. ANA generally increased with age and was higher in women than in men, with the female to male ratio peaking at 40-49 years of age and then declining in older age groups.

"The peak of autoimmunity in females compared to males during the 40-49 age bracket is suggestive of the effects that the hormones estrogen and progesterone might be playing on the immune system," said Linda Birnbaum, Ph.D., director of NIEHS and an author on the paper.

The paper also found that the prevalence of ANA was lower in overweight and obese individuals than persons of normal weight. "This finding is interesting and somewhat unexpected," said Edward Chan, Ph.D., an author on the study and professor of the Department of Oral Biology at the University of Florida.

"It raises the likelihood that fat tissues can secrete proteins that inhibit parts of the immune system and prevent the development of autoantibodies, but we will need to do more research to understand the role that obesity might play in the development of autoimmune diseases," said Minoru Satoh, M.D., Ph.D., another author on the study and associate professor of rheumatology and clinical immunology at the University of Florida.

You can read the entire report here. Read more about the National Institutes of Health here, and the National Institute of Environmental Health Sciences here.

Sjoggies Helping Sjoggies

juliaschulia@gmail.com — Mon, 23 Jan 2012 00:30:01 PST

I recently received this letter. I respond to all letters that are sent my way, but I thought this sjoggie could benefit from others' perspectives, not just mine. Her story is similar to most of ours in some respects, but different in others in that she is not able to tolerate the side effects of drugs commonly used to treat Sjogren's syndrome and is looking for other modalities to ease her symptoms:

Hi, I got your email from your blog.
Thanks for having it out there, as I have been reading, and reading.. and reading some more about nutrition and supplements for Sjogren's syndrome.
I have known I had this for almost 20 years now, and suspect when looking back I had it also affecting me even years prior to that.
I am a mother of 5 grown children, and at present in a flair so far lasting 5 months, which is not uncommon for me, 6 months to a year, then all of a sudden for no aparent reason I have a good few months or a year at best...
I am not sure yet of all my triggers but am very interested in doing what I need to do for "this ol' body of mine".
I need wisdom, and agree with you we are not all made alike, and our symptoms are very individualized.
I seem to think I need to elimiate gluten, and soy, and have dairy in moderation. So far it seems like this is very true for me. I take vitamin D frequently, and I should be taking C but ususally forget to add it to my water (it's in poweder form recomended by my naturopath). I'm thinking I need the Omega fish oil... but want to find small caps, as large ones swallowing is an issue. And I have the liquid but yuk! So there it sits in the fridge.
Can you share any links, or advice,... if you have also done some reading & study in all this......and my own doctors don't say or do much because any meds we have tried just have horrible unbelievable / not tolerated side effects, so I can't take plaquinil or chloroquine.
Anyway any thoughts you may have greatly appreciated.
Thanks.
M.A.

I had to think about M.A.'s dilemma for a bit. In order to answer her questions, however, I'm wondering what exactly her symptoms are, since we all know that the range of effects from Sjs is wide. I'm concerned that her symptoms that she considers a flare are serious for very very long periods of time. Is this a flare? Or is her disease seeing as it is basically untreated, simply progressing to a more severe disease state?

My first thought was that M.A. would need to re-discuss her concerns with her doctor, and if she was not getting answers or a new plan of action, to consider getting another doctor. Not all physicians are comfortable or competent in treating autoimmune diseases.

Even though plaquenil and other anti-malaria drugs are considered first line medications in the treatment of Sjs and other autoimmune diseases, there are other medication options. I believe it would be a very good idea to discuss the possibility of other options with your doctor, or another physician that you trust. Don't give up completely on the use of some medications to dampen the autoimmune response in your body which is the crux of your problems.

M.A.'s efforts to change her diet are definitely on track with other health professional's suggestions: to avoid gluten and limit dairy. The Sjogren's Syndrome Foundation labels a diet similar to this as being an anti-inflammatory diet, and you can read more about it here.

With respect to taking supplements such as fish oil, again, this seems to be a good idea, as suggested by others. You can read a bit more about supplements here. The University of Maryland has an excellent site which discusses supplements' use, side effects, drug interactions, and warnings. Always, but always, discuss taking any vitamin, herb, or supplement with your doctor before using.

I know that several of Reasonably Well's readers are very knowledgeable about complimentary and alternative therapies in the treatment of autoimmune disease, and am asking for your suggestions and input.

Comments? Suggestions? Links?

Hang in there, M.A. We all know how hard this is, and we are all here for you!

We're Not Losing A Daughter.....We're Gaining A Son

juliaschulia@gmail.com — Sun, 22 Jan 2012 00:30:00 PST

It seems as though this picture was taken just yesterday, and Daughter number two still snuggled onto my lap wearing her little footie jammies and clutching her favorite blankie.

And then.....she grew older. But she still seemed to be my little girl, playing her flute...

and goofing around with the dogs....

and excelled at mugging for the camera.

And still does. Hehe.

So when she and her fiance announced that they were planning to be married, I had to wrap my slow old foggy brain around the fact that she was moving past the footie jammie phase of her life......and that I should too.

As happy as John and I are for her and her fiance, and we are thrilled for them both, it's still hard to acknowledge that she's reached this exciting time..

Luckily for me, DN2 is making this easy. And joyful. Just as she has done for every major event in her life. No bridezilla, she.

So DN2, her mumsie, her soon to be sister-in-law, her"aunties" Terese and Susan, and friends set out on the grand search for a perfect wedding gown.

Who knew wedding dresses had pockets these days?!

Auntie Terese modeled the correct way to hold a bouquet....

Oh, my.

Oh.......my.

Oh.............my.

Photos Are A Very Good Thing

juliaschulia@gmail.com — Sat, 21 Jan 2012 08:47:13 PST

As is typical of our adventures, when we head out, John drives and I plop my camera armed with a telephoto lens on my lap. And as we zip along, I keep exclaiming Wow! Gorgeous! Ooo! The light is perfect! and Would you look at that! all the while clicking away madly. John just nods and smiles and keeps his eye on the road, thank goodness.

I finally downloaded the gazillion pictures off my trusty Canon. Here's just a few:

Sleep Is A Very Good Thing.

juliaschulia@gmail.com — Fri, 20 Jan 2012 20:30:34 PST

Especially after an adventure with mah sugah boogah in Goldie.

Zzzzzz.

Amazing!!

juliaschulia@gmail.com — Thu, 19 Jan 2012 19:36:53 PST

Duh.

Of course Blogger has an app for my iPhone. And now that I have it downloaded, my life has suddenly become a bit easier. And less vexing.

So John and I have been galavanting all over the southwest US, which is why my dumb stupid laptop issues have been particularly problematic.

However, by the time y'all read this, I will be home and happily plunking away on my usual computer, and some semi serious Sjogren's dialogue will be forthcoming.

I trust all of my readers, really I do. But I think it would be just asking for trouble to blab to the entire internet-verse that John and I have left the building for an extended period of time. Call me paranoid, but what if somebody took this opportunity to snag Pinky while were gone?!

We have had an absolutely delightful time doing........absolutely nothing. Our timing has been superb, since we scooted East of the Cascade mountains just hours before the Pacific Northwest was slammed with a snow and ice storm.

We don't feel guilty about that one little bit.

We have spent the week driving Goldie's wheels off through the warm sunny weather while listening to some awesome audio books, (Riders of the Purple Sage for example) visiting family, going where our fancy takes us, and eating whatever appeals to us.

Last night's culinary foray found me happily sampling a wonderful pork and hominy soup called posole. And enjoying another margarita.

Not as good as Jose's but deeeelicious.

I hope you all have had as an enjoyable week as we have had.

Pics to follow.

Bleah

juliaschulia@gmail.com — Wed, 18 Jan 2012 20:12:41 PST

So, I am convinced that my computer issued are literally giving me a pain. No, not there, silly. In my tummy. It's stress. I am sure of it. And lack of a functioning "airport" wireless gizmo on my Mac laptop. My new buddy, Jose the bartender tonight, tells me that his signature margaritas are a sure fire cure. So I gave his therapy a try by drinking three of them. In a row. Before dinner. As I queasily made my way to bed tonight, (no. I didn't drive. Hoo boy.) I speculated that I must have eaten a bum piece of broccoli with dinner. Or maybe it was the green beans. Darned vegetables. They'll getcha every time.

Withdrawal

juliaschulia@gmail.com — Tue, 17 Jan 2012 20:54:27 PST

Guys. I am still dealing with techno issues here, and the only way I am able to post stuff is via a slloooowwww cell phone. How will I manage without pouring out every thought,feeling, or brilliant creative concept in fluent blogger-ese?? The world may have to survive without me for yet another day. See ya when I see ya.

Aaarrrggghhhh

juliaschulia@gmail.com — Mon, 16 Jan 2012 15:02:11 PST

Technical difficulties. See y'all soon. I hope.

Hmm.

juliaschulia@gmail.com — Mon, 16 Jan 2012 04:34:53 PST

I am still smiling wickedly at the flurry of responses that Terese's mother of the bride dress evoked. Don't worry. I won't allow my bratty inner child to pull ranks on me and wear a faux jeweled splashy tropical style dress, no matter how much she tantrums. But I would like to ask all you sjoggie fashionistas a favor. Would you send me pics of some dresses that you think would be a good choice? Let's see.....what things would be helpful..... Comfort. Definitely. And a style that would not be prone to wardrobe malfunctions as these seem to happen to me more than they should. Um....and the neckline definitely on the higher side in case those pesky lupus spots continue to pop out on my neck and chest. Oh-and a fabric that would be forgiving if I should have one of those dumb stupid drenching perspiration episodes. And, it goes without saying that I would expect this dress to make me appear at least twenty pounds lighter. Well now, that shouldn't be too difficult.

I'll Get Back To Ya'll About That......

juliaschulia@gmail.com — Sun, 15 Jan 2012 00:30:02 PST

Yesterday was one of those great big red-letter days.

Daughter number two and I (and a cast of thousands...) set out on a mission to find the absolutely perfect wedding dress.

It was an amazing, wonderful day. I'm just not ready to write a post complete with pics and everything. I think I'm still actually coming to the realization that my baby girl is all grown up. But, I expect to come to my senses pretty soon, so keep tuned.

In the meantime, consider this: Terese - who has been a mother-in-law for two years already, what a pro - was on a mission to find the perfect mother-of-the-bride dress for me.

This one only cost about three hundred buckaroos. Whaddya think?

Hey! Terese - I'll order you one too.

Matchies. Cool.

Sjogren's Syndrome Foundation: Tips on Sleep for Sjogren's Patients

juliaschulia@gmail.com — Sat, 14 Jan 2012 00:30:04 PST

Here's the latest in the Sjogren's Syndrome Foundation excellent patient education sheets:

Hit it, Lynyrd

juliaschulia@gmail.com — Fri, 13 Jan 2012 00:30:02 PST

Image found here.

Later this month, John and I are going to throw a week's worth of stuff into Goldie and head out for a good old fashioned road trip.

The man has been working so hard for the past year, and has finally come to a point where he feels comfortable taking a bit of time off. And although John is Mt. Trip Planner Extrordinaire, and usually has our outings planned down to the minute and keeps everything in one of his ubiquitous manilla folders, this time he's just kicking back.

We're going to point Goldie towards the Cascade mountains, head East, and then South towards Arizona. We have family conveniently located there in all that lovely winter sunshine. We have no hotel reservations made, and no agenda. I feel as though we were eighteen again. Hehe.

::cue Freebird here::

Whoooooooooa, and the bird you can not chaianaianaianainain......

Immune Systems 101 Courtesy of Ellen

juliaschulia@gmail.com — Thu, 12 Jan 2012 00:30:00 PST

Wikipedia tomato found here.

My WEGO Health blogger friend Ellen Schnakenberg has penned two very, very good articles explaining our immune systems. The first is entitled, 12 Things About your Immune System Your Doctor Didn't Tell You. Here's a small excerpt:

Before you can truly understand autoimmune disease, it's wise to learn about your immune system itself. This is a complicated, multifaceted subject our doctors don't usually have time to teach us.
This post is designed to give you a few general bullet points you may not have already known about your immune system.

Ellen's second in the series is entitled, Your Thymus - The Educator Of Your Immune System:

Each person has three types of immunity - innate immunity you're born with, adaptive immunity that develops throughout our lives, and passive immunity which is 'borrowed' from another source..........The education of the adaptive immune system begins in an organ called the Thymus gland. When you were an embryo, special tissue migrated from near your brain, down your neck and into your chest. During this migration, parts of this clump of tissue specialized into other glands (thyroid, parathyroid, etc), broke off and stayed in their current locations.

I've posted about this topic previously, and according to one of my reference sources, the Merck Manual, lumps the types of immunity into two groups: innate and adaptive. Others divide them into three groups, however the information is basically all the same.

You know. To-May-toh, To-Mah-toh. Kind of like that.

It's always a good idea to revisit this complicated information and benefit from others' descriptions of this complex body system. Bookmark these articles to visit when you're having one of those What The Heck Is Going On In My Body?! moments.

Here's Your Package

juliaschulia@gmail.com — Wed, 11 Jan 2012 00:30:03 PST

Hey. I was just saving y'all another trip.

I took Maggie and Lulu to the vet today. It was an interesting visit for lots of reasons, one being that I actually put them on leashes and walked the four or five blocks to the animal hospital.

This wouldn't be such a big deal except that last week, I wouldn't have even considered it, since my hips were so painful. But I took a look outdoors at the rare winter sunshine and warm temps, grabbed their leashes and was out the door before I recognized what an extraordinary thing it was - to just walk without pain.

At least for today. Thank you, thank you, Dr. Young Guy, for your skill with that very, very long needle.

So we headed out into the sunshine. The girls were delighted to be on a walk so were especially poorly-behaved and excited. I decided that I'd abandon my attempts to reel them in and just let them pull me along.

Mush, you pups. Like sled dogs.

Living on an extinct volcano has lots of perks - one of them being that the view is fabulous of the other Cascade Mountain foothills - but the downside is that when I head out my door to go for a walk, I can't go far without going significantly UP or DOWN. Luckily, the veterinarian's office was UP on the way over, and DOWN on the way home.

The dogs dragged me UP the hill and into the reception area, where I had arranged to pick up some medications for Maggie, who immediately pooped on their remarkably polished and immaculately clean floor.

Oh, brother.

I had just opened my mouth to apologize, but here's the great thing: the vet tech. leaned over, noticed the pile of doggie poo, and squealed, "Oh, GOOD! Maggie's due for a fecal exam!" and scampered out from behind the desk to scoop it all up in a little plastic bag.

I love this place.

We headed DOWN the hill toward home, and I smiled the whole way.

Ha!

Don't Promise Me Something You Can't Deliver

juliaschulia@gmail.com — Tue, 10 Jan 2012 00:30:02 PST

Maggie keeps my spot on the couch all warmed up.

Arthritis Today tweeted today about an article titled How To Beat Fatigue.

The article is surprisingly good. (Yes, that was snarky but I have had issues with some of the writing in this magazine before, sorry.)

Specifically, I thought the section in which patients discuss their complex relationship with their healthcare providers in discussing this very frustrating problem was apt:

Grant agrees. She knows the “Oh dear, here we go again” look from doctors when she brings up her fatigue. “Doctors don’t want to hear how tired patients feel – I think it makes them feel uncomfortable because they can’t fix it,” she says.

The author also thoroughly covered the potential causes, diagnostic work-ups, medications, and lifestyle changes in the treatment of fatigue as related to autoimmune disease and rheumatoid arthritis.

Figuring out the trigger is like unraveling dozens of tangled strings of lights to find the few burned-out bulbs.

A timely metaphor. Or is it a simile?

It's worth a read, so head over there.

However......and call me a Dottie Downer here, but this otherwise excellent article just bugs me. A teensy little bit. And the problem I have is with the very first statement in the article.

I know that in magazine/online periodical type of writing, a bold "hook" type statement is commonly used in grabbing the reader's attention at the beginning of the article. You've seen them all: LOSE 500 POUNDS IN THREE MINUTES ON THIS DIET! or YOU CAN BUY THIS BAZILLION DOLLAR MANSION WITH NO MONEY!

Oh, brother. So the hook in this piece in Arthritis Today goes like this:

Fatigue is a mysterious and persistent foe, but you can beat fatigue and feel more energetic than ever.

Sigh.

You can? I can? Fatigue can be conquered? Really? So if I experience fatigue, I am not working hard enough? That I'm a slacker because I don't feel more energetic than ever!?

See, why can't these articles just be realistic? And in this one's defense, aside from the hook and the snappy concise conclusion....I'll get to that in a minute....it actually does provide a pretty accurate description of what this fatigue looks and talks and walks like. And the author does explain some very good tips and strategies for managing fatigue.

So what would be wrong with beginning the piece with something along the lines of, Fatigue is a mysterious and persistent foe, but you can have days with more energy.

I know. Not as attention grabbing, but in all honesty, I would much rather read a piece with a realistic opening, instead of one that slaps me with a challenge: Julia! Read This And Do This Or You're A Total Loser! You Can BEAT Fatigue!

Um.

Well, actually, after eight years in autoimmune land, I know that fatigue is going to be an issue for me as long as my inflammation levels are high. I can manage it, and I can learn more about it, and I can learn to discuss it more effectively with my doctor, family and friends, but. It will always be lurking around somewhere, and that's not because I have some kind of character defect that keeps me on the couch every now and then.

This rather irresponsible sentiment isn't repeated anywhere else in the article, except.......

The very last statement.

Keep trying to feel your best and know that, in the meantime, doctors and researchers will continue to study how and why most people with inflammatory diseases experience fatigue, with the hope of creating more and better treatment options.

Whoa! What a concept! It NEVER OCCURRED TO ME THAT I SHOULD TRY TO FEEL MY BEST!

::facepalm::

Thank you, clueless editor, who probably took an otherwise great article and pasted on an unrealistic hook and conclusion.

How DO we manage to get through our days without excellent advice such as this?

The Old Grey Hair Just Aint What It Used To Be

juliaschulia@gmail.com — Mon, 09 Jan 2012 00:30:00 PST

Dang.

One of my new med adjustments is that I no longer take methotrexate, which also means that I have Dr. Young Guy's permission to drink occasionally. And even a bit MORE occasionally than I was over the the holidays. I laughed when I read the package insert for Gengraf, my new med, when it tried to very diplomatically say, It's OK to drink alcohol while on this medication. JUST DON'T WASH THE PILL DOWN WITH A SLUG OF ALCHOL.

I wish I would have saved that sheet so that I could reprint that message. Superbly done.

So John and I and Greg and Terese were enjoying our Friday night let's eat dinner together thing, when the waitress approached us and asked if I wanted anything to drink. I told her that I would enjoy a rum and diet coke. The place was packed and noisy, so she leaned over and asked me if I wanted two shots of rum, to which I replied, Heck no! I'm a real lightweight! She nodded, scribbled something in her order pad and a few minutes later, plopped my drink down in front of me. It looked very, very diluted. Suspiciously heavy on the rum and light on the diet coke. One sip confirmed my assessment. She had to have misunderstood me and I was certain that drink had two shots.

Well, now. Dang. It was very strong....but very good. I sent the drink around the table for everyone else's opinion, but all but John passed. He took a sip and was undecided.

Whatever.

I flagged our waitress down and asked her to take this drink, and dump it into a much larger glass, then fill the new glass with more diet coke, which she did after looking at me as if I had grown a second head.

So I nursed this thing along, and somewhere between the sourdough bread appetizer and about midway through my shrimp fajita entree, I found myself with chin in hand and staring at Terese's mop of shiny dark and completely UN-GREY hair. She noticed, of course. Because by then I had leaned all the way across the table to peer closely at her scalp.

Dang. That drink was strong.

"What?" she finally said. In her teacher-that's-dealing-with-a-strange-student voice.

WHY don't you have any grey hair?, I demanded. Probably a bit loudly since......well, dang that drink was strong.

She sighed and then laughed. "Just my genes, I guess." And attempted to veer the conversation elsewhere.

But, hey. Julia after two shots of rum is an obsessive woman and wouldn't be deterred.

Do you have even one grey hair? I'm actually a few years younger than you. So not fair! I sat back in my chair, pouting. Two shots of rum makes Julia petulant, as well. And, in this very........um.......rational frame of mind, made a decision.

You know what? I proclaimed. Terese looked at me with her patiently-waiting-to-hear-what-crazy-thing-Julia-will-say-next look. I am never going to dye my hair again. I'm going totally natural. Grey. I'm going to love my grey hairs. Let 'em come, baby.

"Really?" She looked at me incredulously. I had actually surprised her this time. "With two weddings coming up?"

Yes. Really. I hate all those chemicals all over my hair every few months. And it's expensive. And I'm not kidding anybody, anyway. Everybody my age has their hair turn grey. INSTEAD OF YOU, you traitor.

"Ah." Terese settled back into her chair and looked at me smugly. "I give you a month. Tops."

This sounded like a challenge.

Bring it, woman.

Hm. I think there's a clause somewhere in challenge legalities, isn't there, that two shots of rum negates any agreements/bargains/or otherwise contractual arrangements?

Dang. That was a strong drink.

Putting Christmas Away

juliaschulia@gmail.com — Sun, 08 Jan 2012 00:30:01 PST

Now that my mobility factor is significantly improved after being poked in the bursa with a very long needle the other day, I have no excuses to delay in putting away my Christmas stuff. Dang. Walking around without wincing is a very very good thing...

In changing seasonal items in my house, I have a tried-and-true method: to just putz around the house, and just kind pick up stuff and throw it on the dining room table, which is where I do a keep/donate/ditch triage.

Later. Or at least sometime before Valentine's day.

Yikes. Dust bunnies LOVE all my Christmas ~~junk~~ decor items.

So I strolled past this pile, and decided to deal with all the Christmas cards that we received this year.

This is just a few of them.

My favorite kind of Christmas cards are the ones that have family pictures.

All right. I know what y'all are thinking, and STOP IT IMMEDIATELY. Those abs are on my nephews. Tsk.

I sent out a grand total of two Christmas cards this year, and you know what?

I don't feel even the teensiest bit of guilt about that.

Which makes me realize how far that I have come in dealing somewhat realistically with my disease. Last year, I was so determined to get my cards out, and all the gifts beautifully wrapped, and yadayadayada......and I was exhausted.

Ok. So this year I was exhausted, too.

But it wasn't because I labored over stuff that wasn't at the top of my priority list, however. As much as I love receiving Christmas cards.........well......I just don't like going through all the work of sending them. And with so many other options out there to keep in touch with friends and family, like email and facebook for example, spending the money on cards and stamps and then expending the energy just doesn't work for me. At least, it didn't work for me this year.

Who knows what next December will bring? It will be interesting to find out.

What A Boring Idea For A Daytime Television Show

juliaschulia@gmail.com — Sat, 07 Jan 2012 00:01:01 PST

So here's the latest episode of "As Julia's Autoantibodies Turn". I just know y'all have been waiting for the next installment with baited breath.

Previously, Julia, covered with unsightly bright red spots and feeling as though her backside was made of a two ton anchor, presented herself to Dr. Young Guy. Our story resumes as DYG enters the exam room.....

Hello, Dr. Young Guy.

"How are you today, Julia?"

Meh.

"That doesn't sound good. What's going on?"

Oh, Dr. Young Guy, whatever shall I do?!

Julia threw her forearm dramatically over her brow.

I hurt! And I'm spotty! And my butt is draggin'!

"Never fear!" DYG stepped out of the exam room and re-entered with a flourish wearing his super-doctor cape. And exam gloves. And carrying a procedure kit. And a syringe with a couple of very very long needles.

Tune in tomorrow as Julia throws her forearm theatrically over her brow and declares, Oh, John! Whatever shall I do? I have all of the Christmas decorations to deal with!!

::BLINK::

Ok. Sorry about that little diversion there. I'm back.

Actually, aside from the super-doctor cape silliness, most of the above conversation actually took place. Oh - and I really do expect to repeat the theatrics regarding Christmas decor with hubby tomorrow. Don't tell him...shhhhh....

I have to sheepishly admit that I DID do the wah wah wah routine with Dr. YG. And after a medication review and physical exam of all those gross spots, my joints, and mouth and, well...y'all have been there and done that, we got down to the serious business of addressing my problems.

My primary concern for the visit was my biopsy results of said dumb stupid spots which did indicate a cutaneous form of Lupus. We will be adjusting my medications to try to reign in this newest autoimmune activity. Dr. YG felt that since I am home to a constant parade of both old, and more importantly, NEW spots, that this indicates an ongoing, active process. So I'll be making some medication changes. No surprise there. Here's a bit of what I learned about subacute cutaneous lupus erythematosis, found here on the National Institutes of Health Medscape site:

Subacute cutaneous lupus erythematosus (SCLE) is a nonscarring, non–atrophy-producing, photosensitive dermatosis. SCLE may occur in patients with systemic lupus erythematosus (SLE), Sjögren syndrome, or deficiency of the second component of complement (C2d), or it may be drug induced.......
Patients with SCLE frequently fulfill 4 or more of the criteria used to classify SLE. Serologic abnormalities are common.....
Approximately 50% of patients with SCLE have accompanying joint involvement. Arthralgias are common, often symmetrical, and usually affect small joints, such as the wrists or those of the hands. Arthritis may occur but is unusual (< 2%).
Patients commonly complain of fatigue. Some patients have Sjögren syndrome, while others note dryness of their eyes and mouth. Patients may manifest symptoms of SLE; therefore, the history should include an assessment for symptoms of pleuritis, pericarditis, neurologic involvement, and renal impairment.

Hm. Fatigue....Dermatosis.....Sjogren's syndrome, joint pain....yep. Sounds familiar, doesn't it?

We then moved on to the next item on my wah wah wah agenda: pain. Specifically, pain on the outer side of my hips which makes sleeping on my side very painful, as well as climbing stairs and lengthy walking. I have had this condition, also known as trochanteric bursitis, for over a year but it seems to have worsened over the last few months. Here's more about this particular kind of bursitis, which is basically an inflammation in the fluid filled sac near the hip joint; this from Medscape yet again:

Bursitis has many causes, such as autoimmune disorders, crystal deposition (gout or pseudogout), infectious diseases, traumatic events, and hemorrhagic disorders, as well as being secondary to overuse. Repetitive injury within the bursa results in local vasodilatation and increased vascular permeability, which stimulate the inflammatory cascade.
Systemic diseases such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, scleroderma, systemic lupus erythematosus, pancreatitis, Whipple disease, oxalosis, uremia, hypertrophic pulmonary osteoarthropathy, and idiopathic hypereosinophilic syndrome have also been associated with bursitis.

Dr. YG actually did re-appear in my exam room complete with a procedure kit, gloves, and a syringe with a couple of very long needles, then proceeded to inject the bursa on the outer side of each hip with a steroid solution, and I am happy to report that last night I slept on my side for the first time in a year! Yeah, DYG!

We finished our session with an admonition to get down to the lab and have my overdue tests drawn, a new prescription, and a return appointment.

I hope my new meds erase my dumb stupid spots. And that the injections ease my hip pain. And that my subacute cutaneous lupus erythematosis STAYS just that. This prognosis from Medscape just one more time:

Approximately one half of patients with SCLE have 4 or more of the criteria for classification as SLE, but in these patients, the disease is generally less severe, although in individual patients the full range of severity and end organ dysfunction is possible.

I have decided to ignore the above prognosis at the moment since I truly trust Dr. Young Guy's judgment and ongoing surveillance. I'm glad that my hip pain is relieved for now. And I'm glad that my lupus is not SLE (systemic lupus erythematosis) at present.

Here's hoping that my dopey autoimmune soap opera is too boring to have it's imaginary contract renewed.

A Short Julia Update

juliaschulia@gmail.com — Fri, 06 Jan 2012 00:01:04 PST

Well, Dr. Young Guy didn't disappoint.

I'll write more about it tomorrow, since I find myself camped out on the couch for the day.

Short story: Another change in meds, not totally unexpected. Lupus rash quite probably of the subacute cutaneous variety and my labs don't support of systemic lupus diagnosis at this point.

Woot!

Snore.