Wednesday, November 30, 2011

Autoimmunity and Hypertension

If someone takes your blood pressure, make sure they use the right sized cuff. A cuff too small gives an artificially high reading. 

I received this question from a reader the other day:
I have Sjogren's Syndrome/mild Lupus and constant High Blood Pressure.  I have tried all types of blood pressure meds unsuccessfully in lowering my pressure.  I truly believe the problem may be due to the inflammation from the Sjogren's S.  Could you recommend something?  I have also seen a naturopath with no success
Here's a modified version of the response I sent to her:

First, I'm assuming that you have discussed this with your rheumatologist and other doctors, since they have been prescribing blood pressure medications. If you haven't mentioned your concern about the inflammatory component, you may want to bring this up at your next appointment.

Secondly: While Sjogren's can and does affect almost any part of our bodies, usually hypertension - high blood pressure - is not usually one of those conditions routinely linked to Sjogren's.

You don't mention what type of lupus you are dealing with. Some of the milder forms not considered systemic or body-wide would not typically cause these types of problems. However, hypertension caused by Systemic Lupus Erythematosis -SLE- is more common. Your suspicion that the underlying cause may be inflammation has occurred to other researchers:
Studies suggest a high occurrence of hypertension during SLE, with some reporting as many as 74% (1). Several studies also suggest that the increase in blood pressure is not dependent upon glomerulonephritis that is prevalent in individuals with SLE (4, 34, 35). In addition to hypertension, SLE is associated with an accelerated risk for atherosclerosis (38), coronary artery disease (27), and stroke (26). Inflammatory responses in the endothelium are known to contribute to the pathogenesis of each of these, and numerous studies implicate a role for cytokines in the progression of SLE.  
You can read this study from 2007 here.

 Other causes of hypertension in systemic lupus patients would include kidney disease caused by the lupus, in turn causing hypertension, or high blood pressure.

Another potential cause of hypertension related to your autoimmune diseases may be side effects of the medications used to treat these diseases. Corticosteroids such as prednisone and other drugs such as cyclosporine can cause elevated blood pressure. So can some of the over the counter medications used by some sjoggies to ease their symptoms, such as allergy and cold medications.

And finally, sometimes hypertension is idiopathic, meaning that the cause isn't clear.

Dumb stupid idiopathic hypertension.

I'm sure that your doctors have talked to you about the usual methods of control of hypertension: losing weight, using less salt and sodium containing foods and condiments, and getting regular exercise. The US National Institutes of Health have an excellent brochure which explains more about reducing high blood pressure, found here.

More recently, some doctors are also recommending eating an anti-inflammatory diet, which in a nutshell is this:
Eating fewer sugars, omega 6 fatty acids, trans fats, dairy products, meats, and refined or enriched grains.

Instead, this diet recommends eating more foods containing omega 3 fatty acids, proteins, fiber, and drinking more water.

There are several good anti-inflammatory diet books out there. The one that I have is written by Dr. Artemis Morris and Molly Rossiter and is entitled Anti-Inflammation Diet for Dummies.

The Sjogren's Syndrome Foundation, which is an excellent resource for all things Sjogren's, has developed a patient education sheet which discusses this type of diet:

Tuesday, November 29, 2011

Disgruntled Julia

Disgruntled elf found here. 

Well. So how did everyone's holiday weekend go?

Mine was frantic but fun. As the last of the kids and their friends drove off, John and I sat back with a contented sigh. We do love the craziness that breaks loose around here over the holidays, but we also appreciate the calm that follows. We enjoyed the quiet in companionable silence for a few minutes.

Suddenly, I had a revelation. "John! I forgot something!"

He was fully reclined in the lazyboy and spoke without opening his eyes. "What did you forget, hon?"

"My drink! After I spent all that energy getting my doc to OK a drink for me on Thanksgiving, I didn't even remember to have one!"

"So do you want one?"

"Heck, yeah! We can toast another successful holiday hoo-rah!" I scrambled to the freezer and scanned the contents, then pulled out a plastic tub and waved it triumphantly in the air.

"SLUSH! There's SLUSH left over!"

I scooped myself a big ol' glass full and then added a splash of ginger ale. (For those not familiar with this delightful concoction, you can read my previous Slushed post here.)

I carefully carried the frozen adult beverage over to the coffee table, sat down and took a sip. Mmmmmmmmm. As I continued to drink, I expectantly waited for that nice warm fuzzy feeling to appear.

But it didn't.

I gave the glass to John. "Is there any alcohol in this at all?!"

"Yep, Babe. Plenty of alcohol. Hoo, is there ever." He passed it back.

Slowly, it began to be apparent to me that.....Hm. Well, it became obvious that the warm fuzzy thing wasn't going to happen, but something else WAS.

Like nausea and breaking out in a cold sweat. And feeling dizzy and just not WARM or FUZZY AT ALL.

Dang.

I gave up with barely 1/4 of the drink gone. As I dumped the frozen fizzy concoction down the sink, I decided that it was a good thing that I hadn't slugged down one of these at the Thanksgiving dinner table.

A good hostess doesn't barf during the festivities.

Wow. I wonder if this means Terese and I will have to forego our annual Disgruntled Elf drinks at Christmastime.

Yes, Terese. If I can't drink, YOU can't either. So there.

Monday, November 28, 2011

The November 2011 issue of The Moisture Seekers published by the Sjogren's Syndrome Foundation contains this excellent article entitled Peripheral Neuropathy and Sjogren's. (The same information can be found as a patient information sheet from the SSF found on my sidebar and is permissible to be reprinted.)

Receiving The Moisture Seekers newsletter is only one of many reasons to head over to the SSF and JOIN.

Sunday, November 27, 2011

Bring On The Christmas Lights


Well, look at that. Wonder where that cord goes? Let's follow it, shall we?


Oh, right. My house - after being festively decorated and immaculate on Thanksgiving - is now um....NOT. It's been transformed into one big electrical transformer.












There's wires and circuitry everywhere, even on my new desk. Ah, but it's all for a good cause.


There's LOTS more where these came from.  Stay tuned.

Saturday, November 26, 2011

The Pie Coma Continues....

Yet another hoo-rah Thanksgiving celebration yesterday. See y'all tomorrow.





Friday, November 25, 2011

Ahhhhhh.




Fantastic friends and family and food.

Sigh.

Snooorrrreee.

Zzzzzzzzz............

Thursday, November 24, 2011

What A Holiday

Thanksgiving at our house is a dual holiday.

Daughter number one was delivered on Thanksgiving 1984. I had made a zillion and one pumpkin pies for a big family hooplah Thanksgiving dinner, certain that this was the one day that I couldn't possibly go into labor. After all, how many babies are born ON their due date? Phhhfffft. Couldn't happen.

And, of course, I was wrong. The in-laws enjoyed the pies. John and I enjoyed our new baby girl.

So ever since then, we refer to Daughter number one as our "little turkey". After which she obligingly gobbles extraordinarily well.

You should hear her. I mean, she's amazing.

D#1 loves combining her birthday with Thanksgiving. Ever since she has been just a tiny little girl, we have always made turkey cookies on her birthday to use at each place setting for Thanksgiving dinner.

Applying the eyeballs. 

This year's batch turned out quite well, I think.



We decided that this year's little army of birds had attitude. Personality.

We love anthropomorphizing.

So the flock watched us devour D#1's birthday cupcakes.


We thought they looked aghast at the carnage that remained.


AND THEN.....the birthday girl THREATENED THE TURKYS WITH THE SAME KNIFE!!!


WHAT DRAMA!

Don't worry, my birdie bunch. Nobody actually eats you guys. We're too full from the real thing, so you should be thankful.

Which reminds me........we should all be thankful. As I am: for just about everyone and everything that surrounds lucky old me.

Happy Thanksgiving, everyone!

Wednesday, November 23, 2011

I Yam What I Yam

I received a very, very surprising email yesterday.

A reader of Reasonably Well had changed rheumatologists. Here's how she described a part of her visit with her new doctor:

"She gave me lots of useful information, and one of the things she suggested was that I might want to read your blog!"

Oh, my goodness. How amazing is that?! I was completely bowled over. As the realization sunk in that my readers were not only patients like myself but also included physicians and other health professionals, I began to worry that the ratio of actual useful information to doofus-ness in Reasonably Well may not be um......ideal.

I immediately clicked over to my archived posts and began to re-read them, hoping that I wouldn't spot too many goofy Julia-isms. Dang. There were zillions of them........I'm so grateful that y'all can find an occasional nugget of useful information hidden in all the silliness found on Reasonably Well.

Ah, but this blog is what it is, and I am what I am. Just like Popeye.

Tuesday, November 22, 2011

Sjogren's Syndrome Foundation: Tips for Airline Travelers With Sjogren's

With the Thanksgiving holiday quickly approaching in the US, sjoggies everywhere are packing their bags and getting ready to fly off to an awaiting turkey and pumpkin pie.

Mmmmm.....pie......must....grab....rolling pin......

::blink::

OK. I'm back.

Sjoggies know that air travel, which is a PAIN even in the best circumstances, can be a MAJOR PAIN with Sjogren's syndrome: the dryness of the airline cabins, TSA regulations about traveling with liquids, the fatigue from crossing time zones and lugging all that stuff from one city to another.......gosh. The list could go on and on and on.

I'm thinking that this is a good time to post this patient education sheet from the Sjogren's Syndrome Foundation:

Monday, November 21, 2011

Just One More Thing....

Every now and then I skim through some of my Sjogren's syndrome reference books.Yesterday, this paragraph on page 169 from The Sjogren's Syndrome Survival Guide by Teri P. Rumph, Ph.D. and Katherine Morland Hammitt really grabbed my attention:

For many people with Sjogren's, there is always some medical problem to deal with, and both the symptoms and the process of dealing with these problems are exhausting, frustrating, and traumatic.  A chronic disease can bring nonstop stress.  It is important to find ways to release it whenever possible. The goal is to maximize the stress-free intervals, and to deal with the stressful ones as expediently as possible. Sometimes, and here we are referring to any kind of ongoing stress, it feels as if healing takes places in the cracks, those stress-free intervals between one crisis and another. 
So true, isn't it?

Just when I think that I have my body's response to autoimmune disease all figured out......something else happens. In my case, that something else is a new batch of weirdo skin lesions on my back.

These are the best-looking ones of the bunch. 

Yes. They look strange. My doctor described them as annular (shaped like a circle), and discreet (each lesion formed separately of the others). I describe them as kind of itchy, and turn bright red when I'm in the pool, which makes me a bit nervous that people there will think that I have something infectious. Which I don't. I think.

It seems that Dr. Young Guy is speculating that these splotches may be from the onset of subacute cutaneous lupus erythematosis.

Yippee.

I am scheduled for a biopsy, which hopefully will diagnose or rule out SCLE. I am also trying not to obsess or fret excessively about this potential addition to the autoimmune party going on in this old body.

Here's a bit about SCLE found here:
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.......Subacute cutaneous lupus erythematosus (SCLE) uncomplicated by severe SLE has a good prognosis. Some patients may manifest spontaneous remission; however, most have chronically active disease or a course punctuated by intermittent exacerbations. Exacerbation in the spring or summer is not uncommon.
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.
Breathe, Julia. Just breathe.

Sunday, November 20, 2011

Random Pastry Drive-By

Image courtesy of Just Delicious Bakery. I inhaled my eclair before I could take a pic. 

Want to hear another Bev story?

Yesterday, the doorbell rang. I opened the door, and there was Bev, holding a pastry box and chattering on her iPhone. She quit yakking just long enough to shove the box at me and say For you! then pivoted and ran back to her car, waving at me over her shoulder. She gunned the car and headed down the street, tires squealing and leaving a trail of exhaust.

John and I looked at each other and laughed.

I opened the box to reveal a ginormous, gorgeous, chocolate glazed creme-filled eclair pastry. Yessssss......

I've never been eclair-ed before. Cool.

A few seconds later, my phone rang. I was still standing in my foyer entranced by the delectable looking contents of the box in my hand.

"Girl!"

Wow, thanks, Bev!

"Girl. It's sugar free. I found an amazing bakery that only makes stuff for diabetics. It's only 200 calories."

You're kidding.

"Would I kid you?" (Yes. She would, actually.) "NO I WOULDN'T!"

She was right - it was amazingly delicious and sugar free. If you're in the Portland, OR area, you can visit this shop, one of only five similar bakeries in the United States: Just Delicious Diabetic Delights - Sugar Free Bakery and Candy Shop.  (I am only basing my post on the one product given to me by my BEST FRIEND EVER BEV, so I can't comment on their other goodies. And, of course, I have received no compensation in any form for mentioning this shop.)

(Dang.)

 It's interesting that they do not sweeten their products with aspartame, saccharin, honey, fruit juice, Nutri-Sweet, or molasses. This from their webpage:
 We have found over the past two years of baking and research that we feel very comfortable with (4) four different sugar substitutes.  Because our recipes are very confidential, we will tell briefly about the four primary substitutes: 
1.)    Fructevia:  A blend of Natural Fructose, FOS Stevia & Magnesium Carbonate.  This product is Low Carb, PH Balanced, Chemical Free, Gluten Free & Non-GMO. 
2.)    Steviva Blend:  Stevia & Erythritol (all natural gluten free grain extract) this product is easy on digestion and with a zero glycemic index is also safe for diabetics.  It also is low calorie-low carb-gluten free-No maltodextrin & No GMO’s 
3.)    Sucralose:  Safety has been confirmed from more than 100 studies over the past 20 years. Including Toxicology, oncology, neurology, pediatrics, etc.  
4.)    Fruit Sweet:  A natural product we found from Washington State.  Made with the pulp & fiber of Apples & Pineapples. High in fiber. Slow to process.  It is also gluten free, Diabetic friendly & NO preservatives!

Saturday, November 19, 2011

Sjogren's Syndrome Patient Education Sheet: Muscle and Joint Pain in Sjogren's

Here's the latest excellent patient education sheet from the Sjogren's Syndrome Foundation:

Friday, November 18, 2011

Another Research Center for Sjogren's Syndrome!

This very, very good news from Sjogren's Quarterly:
The Oklahoma Medical Research Foundation (OMRN) has received a five-year $7.8 million grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the National Institutes of Health. The funds will be used to create the Oklahoma Sjogren's Syndrome Center of Research Translation which will focus on developing new ways to diagnose and treat Sjogren's. The center will be headed by Sjogren's Syndrome Foundation Research Grantee Kathy Moser, PhD....................."IMRF is already a world leader in Sjogren's research, and this grant allows us to continue important work on finding the causes and potential treatments for the disease," says Dr. Moser, who serves as primary investigator on the grant and director of the OMRF Sjogren's Research Center. "We'll be using new technology to make inroads on questions that have been asked about this disease for decades." 

Thursday, November 17, 2011

Goooooooooooooooooo Sjoggies!

Yesterday's post regarding the publication of a NEW Sjogren's Syndrome Handbook elicited this response from Rebecca:

I received my copy last week in the mail. The book is really well written and has a lot of very good information. I would highly recommend it. I am still reading my copy, but won't fully delve into it until this week of finals is over! :)
Girl! I'm behind you all the way during these finals. AND, I know that there's lots of other sjoggies that are under stressful situations right now. Jennifer Pettit, for example.

I've decided that it's time to bring out a secret weapon here. Something that will encourage everyone out there that needs some support during difficult life moments such as finals, or job stresses, or health challenges.

Back in the '70s I was a member of our high school pom pom squad. Check out the black boots. Groovy, man. I'm the second one from the right.


I don't come even close to fitting into my uniform anymore but I can still cheer with the best of 'em. While sitting. And with a full glass of water nearby. And wearing comfy stretchy yoga pants. And orthopedic inserts in my shoes.

So. Here's a sjoggie cheer that's guaranteed to.......to.......well, I'm not sure what it will do except motivate me to stay on a diet. And for everyone else, provide a bit of comic relief.

C'mon everyone! Join in! Let's do a sjoggie cheer!!!

Ahem. Are we all stretched out and ready to go? Got your poms all fluffed and at waist height? Vaseline on your teeth so that you can keep smiling without your lips sticking to them? Lines straight?

Alrighty, then. Here we go!

Rah! Rah! Rah!
Siss Boom Bah!
Sjoggies are the best, so HA HA HA!

Rah Rah REE!
Kick 'em in the KNEE!
Rah Rah RASS!
Kick 'em in the....

(oops. Wrong cheer.)

Sorry. Let's regroup, people.

Um...dang....which cheer should we do next.....

Quick! Diversion! High kicks! Splits if you've got 'em, girls!

(Insert thunderous crowd applause here.)

Wednesday, November 16, 2011

Doing A Little Shopping.....

I bopped over to the Sjogren's Syndrome Foundation site today, and checked in to their Sjogren's -- Related Books page, found here. I haven't visited in awhile and was interested to see several new books listed. Of particular interest:

The Sjögren’s Syndrome Handbook (2011)
edited by Daniel J. Wallace, MD
 
Published in conjunction with the Sjögren’s Syndrome Foundation, this edition of the Sjögren’s Syndrome Handbook has been completely revised and expanded with ALL NEW articles and the latest information on Sjögren’s syndrome. 
This hard cover book is written by the foremost medical professionals in the field of Sjögren’s. The language is at college level and while the book is medically detailed it is still easy for the lay person to understand. Written with patients and care givers in mind, many patients have found this book to be an excellent gift for their doctors! 
This book contains 35 chapters with new topics covered such as genetics, the nervous system (central, peripheral and autonomic), vasculitis, gynecology and pregnancy, the GI tract, lymphoma, musculoskeletal pain, Vitamin D, and an in-depth look at subjects related to living with Sjögren's and enhancing quality of life. 
The book has over 66 contributors, all of which are some of the greatest minds working on Sjögren’s syndrome today.  
This book is a must for every patient, healthcare professional and library! 
Member Price: $26
Non-Member Price: $30
(You must be logged in to to purchase at Member Price. Double check you are receiving the correct price before finalizing your purchase.)
I did not know that a new version of the Handbook was published. As a member of the SSF, when I order I will receive a discount, yet another benefit of becoming a SSF member.

C'mon US Mail. I want it NOW.

Tuesday, November 15, 2011

I Only Wish It Were That Easy

Awesome carrot picture found on wikipedia. 

The latest Venus Williams news? She's eating vegetables.

Really? Vegetables?

Apparently this will erase her Sjogren's woes:
Venus Williams has revealed that she believes a diet of raw vegetables will blast her back to the top of women’s tennis.
What a revelation! What a concept! Gee, I'm sure that it has NEVER OCCURRED TO ANY OTHER SJOGGIE to eat more healthy fruits and vegetables to encourage good health. Or doctors or researchers, either! What were we thinking? The woman is a genius! Alert the media!

Wait.....

Oh, right. She did.

It Begins Again

My highly trained technical crew is at it again.


There's some serious soldering and construction and wiring going on around here in preparation for this year's Christmas light show.


Just LOOKIE at one of this year's additions! Pinky the Santa Flamingo! A tasteful addition, if I do say so myself...


Rumor has it that an electrician has been called to install more circuits.

My goodness.

Monday, November 14, 2011

Monday Monday

ZZZZZzzzzzzz..

It's a typical Monday here, meaning I am recuperating from Saturday and Sunday. See y'all tomorrow.

Sunday, November 13, 2011

Two Unrelated Things

Amazingly awesome kitchen sign found here


First: As of last week, Reasonably Well has had 200,000+ visitors! That's a lot of sjoggies!

Secondly: I have been seeing this sign around in various stores and it really tickled my funny bone:

 A Countless number of people have eaten in my kitchen and have gone on to lead completely normal lives.

Ha! Wish I would have snapped a picture.

Happy Sunday, everyone.

Saturday, November 12, 2011

That's A Good Question


Yes. I moved my desk again. Actually, I ditched the little white desk and yoinked this one from my kids' stash of unwanted furniture in my basement. Finders keepers is my philosophy. 

Gee, I learn new things from y'all constantly.

Today's lesson courtesy of Stephanie, who asked what I knew about the prescription anti-inflammatory Mobic.

Other than the very basics, I knew little about the use of this drug, which meant that I had a new opportunity to dive into the internet and see what I could find.

Um. Is that considered going to the "cloud"? And what the heck is the "cloud" in internet terms, anyway? John has tried to explain it to me repeatedly but I guess this cloud is just too far above my head. Har har.

Sorry. I digress.

Here's what I have learned about Mobic, or meloxicam. This information was found on the PubMed Health site which is a service provided by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).


Why is this medication prescribed?


Meloxicam is used to relieve pain, tenderness, swelling, and stiffness caused by osteoarthritis (arthritis caused by a breakdown of the lining of the joints) and rheumatoid arthritis (arthritis caused by swelling of the lining of the joints). Meloxicam is also used to relieve the pain, tenderness,swelling, and stiffness caused by juvenile rheumatoid arthritis (a type of arthritis that affects children) in children 2 years of age and older. Meloxicam is in a class of medications called nonsteroidal anti-inflammatory drugs (NSAIDs). It works by stopping the body's production of a substance that causes pain, fever, and inflammation.


How should this medicine be used?


Meloxicam comes as a tablet and suspension (liquid) to take by mouth. It is usually taken once a day with or without food. Take meloxicam at the same time every day. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take meloxicam exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor. Shake the suspension well before each use to mix the medication evenly.


Other uses for this medicine


Meloxicam is also used sometimes to treat ankylosing spondylitis (arthritis that mainly affects the spine). Talk to your doctor about the possible risks of using this medication for your condition.


This medication may be prescribed for other uses; ask your doctor or pharmacist for more information.


What special precautions should I follow?


Before taking meloxicam,

  • Tell your doctor and pharmacist if you are allergic to meloxicam, aspirin or other NSAIDs such as ibuprofen (Advil, Motrin) and naproxen (Aleve, Naprosyn), or any other medications.
  • Tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention the medications listed in the IMPORTANT WARNING section and any of the following: angiotensin-converting enzyme (ACE) inhibitors such as benazepril (Lotensin), captopril (Capoten), enalapril (Vasotec), fosinopril (Monopril), lisinopril (Prinivil, Zestril), and quinapril (Accupril); cholestyramine (Questran); diuretics ('water pills'); lithium (Eskalith, Lithobid, others); and methotrexate (Rheumatrex). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • Tell your doctor if you have or have ever had asthma, especially if you have frequent stuffed or runny nose or nasal polyps (swelling of the lining of the nose); swelling of the hands, feet, ankles, or lower legs; or kidney or liver disease.
  • Tell your doctor if you are pregnant, especially if you are in the last few months of your pregnancy, you plan to become pregnant, or you are breast-feeding. If you become pregnant while taking meloxicam, call your doctor.
  • If you are having surgery, including dental surgery, tell the doctor or dentist that you are taking meloxicam.

What should I do if I forget a dose?


Take the missed dose as soon as you remember it. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for a missed one.


What side effects can this medication cause?


Meloxicam may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

  • diarrhea
  • constipation
  • gas
  • sore throat
  • cough
  • runny nose

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately. Do not take any more meloxicam until you speak to your doctor:

  • fever
  • blisters
  • rash
  • hives
  • itching
  • swelling of the eyes, face, tongue, lips, throat, arms, hands, feet, ankles, or lower legs
  • difficulty breathing or swallowing
  • hoarseness
  • pale skin
  • fast heartbeat
  • unexplained weight gain
  • nausea
  • excessive tiredness
  • lack of energy
  • yellowing of the skin or eyes
  • pain in the right upper part of the stomach
  • flu-like symptoms
  • cloudy, discolored, or bloody urine
  • back pain
  • difficult or painful urination

Meloxicam may cause other side effects. Call your doctor if you have any unusual problems while taking this medication.


If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].

I just want to point out that although "excessive tiredness" and "lack of energy" is listed as reasons to discontinue the use of this drug and call your physician, for many of us, these are the most problematic symptoms of Sjogren's syndrome. So if this drug seems to cause fatigue above and beyond what you normally experience, then give your doctor a call.

Since I haven't used this drug before, I can't share my personal experiences with it, but I'll bet that some of my readers have. Post a comment if you are on Mobic or have taken it in the past. Please?

Friday, November 11, 2011

He's Done It Again


Draw two more halos for the complete picture. Free clipart found here. 


Well.

I had another appointment with my new rheumatologist Dr. Young Guy yesterday. I walked into the exam room, wondering if my first favorable impression of him was too good to be true, since he earned a halo for that very thorough one hour getting-to-know Julia appointment.

Yikes.

This gentleman has just sprouted yet another halo with these words: I see you've lost a few pounds. That's great! But don't be losing weight too fast. Take it slow and easy, otherwise you'll just gain it back.

What?!?

::DON'T LOSE WEIGHT TOO FAST::

I almost swooned. I don't think any doctor has ever said that to me before. Instead, I'd hear not so subtle comments about how much better I would feel if I lost a significant amount of weight.

After I regained consciousness, we went on to discuss other more mundane things. Just as the exam was finishing up, I thought to ask Dr. YG a question. I knew that the holidays were fast approaching and I really wanted to have an occasional glass of wine or cocktail without feeling panicked that I would be wiping out my liver. So.....Dr......would it be OK? I asked.

Are you ready for this one?

He earned a third halo, believe it or not. I certainly can't tell you that it would be a good thing to drink alcohol while you're on methotrexate. BUT. Your liver enzymes are just fine, and I'm trusting you to limit yourself to a very occasional drink, right?

Yessss! Thank you! Happy Thanksgiving and Merry Christmas and Happy New Year! You can count on me! I'm the perfect patient!

Um....Don't tell him about BICJ, OK, guys?

Guys?

Thursday, November 10, 2011

It Isn't Over Until The Last Leaf Falls

Yesterday I was reviewing my pictures from our vacation to the midwest. I was marveling at all the gorgeous fall colors and feeling a bit sentimental and wistful. As much as I love living in the Pacific northwest, I remember those brilliant fall leaves with such fondness. Sigh.

Then.

I looked out the window and noticed that......Boy howdy. The maples that John and I planted several years ago, and have been anxiously watering and pruning and fertilizing were actually pretty colorful this year.

I put down my coffee cup and stepped out onto our deck. Why hadn't I noticed this sooner? The entire back border of our yard was ablaze with oranges and reds!

Zowie.










Wow. Fall followed me home.

Wednesday, November 9, 2011

Oh. My. Gosh.

So, as I was driving home from the grocery store yesterday I was listening to NPR news. The man with the wonderful deep bass voice commented that Dr. Conrad Murray, accused of killing Michael Jackson was found guilty of involuntary manslaughter.

I reflected for a moment about that, and thought that it was a shame that such a talented, tormented, and strange man as Michael Jackson should have his life ended this way.

I pulled into the garage and began unloading my groceries from Goldie, and noticed that my oldie Keene sandals were SQUEAKING TO THE TUNE OF "BILLIE JEAN".

Honest and true.

Significance? You decide.

Tuesday, November 8, 2011

She Can't Walk Off Her Court


Thanks to Venus Williams and the publicity that resulted from her Sjogren's syndrome diagnosis, the media response continues. Head over to the Richmond Times-Dispatch for their latest in the In My Shoes series. Author Kelly Wolfsheimer has written an outstanding article which describes the working sjoggie's perspective:

This summer, Venus Williams pulled out of the U.S. Open, revealing that she had been diagnosed with Sjögren's syndrome. 
My first reaction when I heard about it was anger. How was it that Williams got to walk off her court and I didn't? 
It wasn't that I had no empathy. I, too, suffer from Sjögren's syndrome, with an overlap of lupus........ 
Continue reading here.

Monday, November 7, 2011

What Friends Do

Image found here. 

Last night was not a good night.

I have been doggy-sitting my friend Susan's dogs for the weekend. The sweet elderly diaper - wearing schnauzer named Shadoe has always been a favorite of mine. She was intelligent and so even-tempered and loved everyone. I thought her name was clever. Her fur was a silvery grey - like a shadow, and also was a female - like a doe.

For the most part of the weekend, Shadoe acted like a gentle little furry bump-and-go car. She padded around the house contentedly, yet since she had poor vision and hearing, occasionally she would bump into things after which she'd just back up and head off in a different direction. Yes, she needed doggy diapers, but overall she seemed comfortable and enjoyed her dog food and snacks and lots and lots of snuggles.

That is, until late yesterday evening. Suddenly, her whole posture and demeanor changed. She arched her back and began to pace, unable to settle anywhere. She wasn't interested in her food, and gradually her breathing went from being even and easy to panting. When she began to whimper and cry, I began dialing Susan's cell, who had muted her phone for the night and didn't realize that I was trying to get in touch with her.

John and I and our friend Naomi tried to assess Shadoe's condition and attempted to comfort her, but the best we could do was make the obvious assumption that something was seriously wrong and that she was in pain. Which meant we all felt her pain too. The poor little woogie. I hated feeling so helpless. I wrapped her in her blanket and tried to soothe her but nothing seemed to relieve her distress. After finally reaching Susan and contacting the local emergency pet clinic, it was by then nearing midnight.

What do you think I should do?!?, asked my anguished friend over the phone.

I'm going to tell you honestly, Susan....we know Shadoe has had some serious health problems lately and that she's almost fifteen years old. I'd like to take her over to the clinic and have the vet look at her and see what's going on, but....

I paused and took a deep breath.

....I think she's telling us that it's her time to go.

There was nothing but silence from the other cell phone.

Then, You're right. You're right. I have known for so long that something like this would happen but it's still so hard. Thank you for being there for her - and me.

Naomi and I bundled poor Shadoe, who by now had begun to quiver uncontrollably, into a car and headed into town. We were met at the clinic's door and were ushered back into a small room furnished with a comfortable sofa and a rocking chair. The young veterinarian, having already spoken to Susan on the phone, gently examined Shadoe and came to the same conclusion that we had.

An assistant carefully carried her to a procedure room and inserted an IV into her hind leg, then returned her to me. I tucked her into her little blanket and held her close, smoothing her fur and telling her how much we all had loved her while slowly rocking her in my chair.

As the doctor gave her medications through her IV, I felt Shadoe relax, her breathing slowed, and finally her muscles became totally limp. He placed his stethoscope over her heart and told us that she was gone.

Naomi and I wept as we embraced this sweet little dog that we had known and loved for so many years, and after several minutes, rather reluctantly handed her back to the vet.

It seemed so surreal to just walk out of the clinic into the very early hours of the morning without her. Yet Naomi and I both expressed the same thought - that we were grateful that we had been able to have been there and that Shadoe was finally released from her pain. As we drove home through the darkness, we were able to brush away our tears and reminisce about Shadoe's life and adventures with smiles and laughter.

I know that the day will come when I will have to say good-bye to one or both of my little schnauzer girlies. I hope that day is a long, long, time coming. And if I'm not able to be there, I hope that I will have a good friend who will wrap her in her favorite blankie, and while whispering loving words in her ear, rock her to sleep.

Sunday, November 6, 2011

The Scoop on Spit

The November issue of Science News, which has an attention grabbing tongue and saliva image with the words DROOL DIAGNOSES underneath, contains an engrossing article entitled A Spitting Image Of Health. Here's an excerpt:

Saliva — the frothy fluid that helps clean the mouth, digest food and fight tooth decay — carries many of the same proteins and other molecules found in blood and urine. Scientists have long been interested in mining a person’s mix of these compounds for clues to diagnosing diseases. Three years ago, these efforts got a boost when researchers completed a preliminary master list of the proteins found in spit — 1,166 of them. 
Since then, scientists have nearly doubled the length of the protein list, while identifying changes in the salivary protein profile that are linked to disease. Other labs are delving into genetic material found in human saliva, looking for variations in gene activity that might signal disease risk.
I've posted in the past regarding the potential for autoimmune diagnoses using proteins found in saliva. It's exciting to see that the research continues and could potentially benefit an enormous population:

Digging in: That frothy fluid in your mouth holds all kinds of clues to the body’s happenings.
Drug use: Saliva can reveal drug use, whether for therapy or recreation.
Hormones: Commercial test kits gauge estrogen, testosterone and cortisol levels from saliva.
HIV: The U.S. Food and Drug Administration has approved a test that looks in oral fluid for antibodies known to be present in people with HIV infections.
Age: A recent study suggests that genetic clues in spit can pinpoint age to within five years.
Cancer: Messenger RNA signatures for breast and pancreatic cancer have turned up in saliva.
Heart disease: The protein troponin T in spit may pinpoint people having heart attacks.


Head over there. It's a great read.

Saturday, November 5, 2011

Princess Would Understand

At least these guys weren't forced to wear dolly clothes. Pic found here. 

I'm doggy-sitting for a friend this weekend. One of the dogs is a very very old schnauzer. She's such a sweet little thing, but she's definitely showing her age. So she wears little doggy diapers. Actually, I think she looks cute in them with her fluffy little grey tail poking out the special tail opening in the diapers. And she really doesn't mind wearing them, so it's all good.


I was stuffing this little furry woogie into a clean diaper this morning when suddenly I began to laugh as I remembered the one and only other time that I diapered anything other than a child.

One of my daughters had finished taking a baby-sitting class which was pretty comprehensive. So she accepted her first job with excitement, until she realized that the child she would be babysitting wore diapers. And that this was something that the class didn't discuss.

Mom! You've got to teach me how to put on a diaper! she said frantically. The parents were picking her up in just a few hours.

Hm. I had to think about this. Suddenly I remembered that a visiting family had left behind a package of Pampers awhile back, and that I had crammed them in the back of the linen closet thinking that they would probably need them on their next visit. I yoinked the package out of the closet, then wondered aloud what we could use to practice actually putting these things on......

At that moment, our kitty cat made the unfortunate decision to stroll by. Daughter and I looked at each other and laughed. I grabbed poor Princess kitty and plopped her down on my bed next to the diaper.

You can guess what happened next. Although the tail proved to be a bit of a challenge.

That sweet little cat just lay there and let us diaper and re-diaper her. Actually I wasn't all that surprised since the girls had dressed Princess in every doll outfit that they could think of and then drove her around in their Barbie convertible when they were little. What an unbelievably tolerant cat.

So she was repeatedly diapered until I was confident that Daughter would be proficient in changing an actual baby. Princess is lucky we didn't have actual baby wipes and were pretending with plain Kleenexes.

Daughter came home from her babysitting job beaming. Diapering a baby is so much easier than a CAT! she said.

I would agree. I think diapering a baby is easier than a cat. Or a schnauzer.

ShareThis