I Resolve ........

Image by nkzs

Unless you have been in outer space for the last month or so, you know that the new year starts tomorrow. Time to usher in 2009 with champagne and streamers and of course, a new year's resolution. 

Anyone want to make a wild guess what my resolution is? Anyone? 

I'm sure John is hoping that my resolution this year involves some sort of money management on my part, specifically my shopping habits on Amazon.com. Sorry, honey. Dang, you can find anything on Amazon. And it will be on sale. And maybe even free shipping. Now that's what I call real money management. 

Dr. S., my rheumatologist, would want me to make not one, but several resolutions. I know that they would have to include nasty things such as:

• Reducing my BMI,
  
• To promise to quit messing around with my medication dosages (note to readers: DON'T MESS AROUND WITH MEDICATION DOSAGES!),
• To make a sincere effort to get that 24 hour urine lab test completed that was ordered six months ago. 
  
• To bring better quality chocolates next visit.

I'll try, Dr., I will. But that's not my resolution, sorry.

If Sammy and Maggie could speak human, they would demand that I resolve to take them on more and longer walks. I'm sure doggie treats would also factor in as well. It's probably a good thing that they only speak in soulful, paw-on-the-knee-type begging. 

Could my kids view me as anything other than perfect? Of course not. I'll bet they wouldn't have any suggestions for my resolution this year. Just indulge me on this one. I have to have a few delusions.

No, my resolution this year is not to make a resolution. Sound rebellious? Yes, indeed. My life is already limited in so many ways - by my energy levels, by the effects of brain fog, and by side effects of my medications. I'm sure I could think of more limitations but let's not go down self-pity avenue right now. 

My resolution to not make resolutions is a commitment to be just a little nicer to myself, to enjoy those positive aspects of my life right now, and to cut myself a little slack when I don't measure up to some self-imposed expectations. 

Happy New Year, everyone! Here's to a healthy, happy 2009. 

Scripps Article

Image by igowerf

This article  written by Robert I. Fox, M.D, Ph.D and Paul E. Michelson, M.D. of Scripps Memorial in La Jolla, CA, and Dona Frosio from the Sjogren's Syndrome Foundation, is  by far the most thorough description of Sjs and it's treatment that I have seen. It was published in 2002, and overall it is an excellent resource. It is a lengthy article, but well worth the time spent in reading it. Here's a paragraph from the opening page: 

 ...dryness of eyes and mouth are termed keratoconjunctivitis sicca (KCS).  There are many different causes for KCS.  When they occur as a result of an autoimmune process, the condition is called Sjögren’s syndrome, which usually occurs in middle-aged women and has prevalence in about 1 in 500 adult persons. There is a marked predisposition of women (about 9:1) with two peaks of age of onset.  The first peak occurs during the childbearing period in the mid 30’s and a second peak in postmenopausal years during the mid 50’s although the condition can occur at virtually any age including in children as part of the spectrum of juvenile rheumatoid arthritis.  Patients may also have inflammation of the joints (arthritis), muscles (myosi tis), nerves (neuropathy), thyroid (thyroiditis), kidneys (nephritis), lungs (pneumonitis), lymph node swelling (lymphadenopathy) or other areas of the body.  Also, patients may have severe fatigue and disruption of their sleep pattern. 

The paper goes on to discuss in great detail the history of Sjogren's, the body systems affected, and treatment. 

Bookmark this one! 

Pat's Fund

One of my family members noticed a billboard for  Pat's Fund when he was in Seattle. I hadn't heard of this non-profit agency dedicated to funding research for autoimmune disease. Here is an excerpt from their website:

We are a non-profit organization dedicated to increasing awareness and available money for autoimmune disease research. Amazing achievements are currently being made by the research scientists we support at Benaroya Research Institute (BRI) in Seattle, Washington. 

BRI’s team of world-renowned scientists are focused on identifying causes and cures for devastating diseases including rheumatoid arthritis, fibromyalgia, multiple sclerosis, lupus, Crohn’s Disease, type 1 (juvenile) diabetes, psoriasis, Addison’s Disease and the other 
75+ autoimmune diseases that affect 1 out of 5 people.

Pat's Funds donates 100% of their profits to the Benaroya Research Institute at Virginia Mason in Seattle, Washington. 

Slushy Anti-Inflammatory

Picture by me. Thanks to Terese for providing mug. 

An article in the online December 2008 Molecular and Cellular Endocrinology issue titled Ethanol exerts anti-inflammatory effects in human adipose tissue in vitro, caught my attention today. It cites a study completed by the Department of Energy and Metabolism, Aarhus University Hospital,  in Denmark. 

In the study, ethanol, or the alcohol found in cocktails and other adult beverages, was found to exert an anti-inflammatory effect on adipose, or fat tissue, "suggesting that ethanol may attenuate whole body inflammation".

Well, now. 

Let's lift our glasses high in a toast to anti-inflammatory good health in the upcoming New Year's Eve parties! For those who need a good recipe for a holiday adult beverage, see my post about slush. Tasty, and now I know, good for you. 

In moderation, of course. 

Snowed In

Image by quentinh

We've had a ginormous snowstorm here in the Pacific Northwest over the last few days. From what I hear on the news, we are not alone under our blanket of snow - several parts of the United States have been hit by snowy weather. 

I was very fortunate to be riding out the storm with my family and one of my dearest friends and her family. We spent the last three days making candy and cookies, playing games, trekking around in the snow, watching movies, and best of all, just enjoying the simple pleasure of spending unscheduled time together. 

Christmas is yet to come but I think I've already received my favorite present. 

Dr. Garfield

Image found here. 
This morning I was reading an article found on Yahoo! News, and at first glance, I thought it was pretty helpful. It discussed the pressures that the holiday season brings on those who are trying to diet or who are overweight and should be dieting. 

The author included some helpful, reasonable and generic tips such as using portion control, focusing on the spirit of the celebrations rather than the foods, and if you overeat, just hop back on the wagon the next day to minimize the caloric damage. 

Then finished the article with this ridiculous land mine:

"Make a resolution to find out what you really hunger for in life and what you're looking for that you can't find in food".

Puhllleeeeze. 

This was obviously written by one of those skinny, smug authors that subscribe to the theory that anyone lugging around an extra ten pounds has an unresolved deep psychological problem. They, the svelte elite, have all of life's answers tucked neatly in their perfectly healthy psyche. What an arrogant and judgmental, not to mention entirely false, assumption.

I tell you what, Mr/Ms Dodo-head - I suggest you schedule an appointment with my favorite psychologist, Jim Davis. I have a cartoon strip on my refrigerator which goes like this:

John: Did you ever stop to think that you might eat so much because of some emotional need? ...That you eat to compensate for some inner need?

Garfield: Of course. It's called hunger, you dipstick. 

Bingo. 

Snow

Image by TouTouke

Snowflakes.

We're having a beautiful snowfall. As I watch the snowflakes drift down, I think about everything that I have heard about snowflakes, how each one is individual and different; the same story and lesson we all have learned about snowflakes: to appreciate the unique characteristics in each flake, and in doing so we are reminded about the special qualities in each one of us. (And also that some of us, myself included, are flakier than others.) 

Today I observed something in the falling snowflakes that I hadn't noticed before.  The ones closest to me seemed to be falling faster than the ones viewed from a distance. Yet they all actually were falling at the same rate and reached the ground in the same amount of time. 

Someone far more creative than me would create a lovely philosophical and meaningful metaphor of sorts that compares the perspective of falling snowflakes with how quickly life passes when viewed up close, yet in the grand scheme of things, we all reach the ground at the same time. 

So what could one learn from that metaphor that someone else surely could phrase better than I?

I guess I could learn a great deal about enjoying each day and minute and hour that goes by. 

It also means that I'm trying to justify the fact that my resolve to avoid Christmas sweets has completely crumbled. I'm looking at a large pan of my home-made fudge, with sticky fingers and chocolate on my face, and an entire row of candy missing from the pan. I savored every bite. I licked every bit of sweetness from my fingers. I enjoyed every minute. 

Blame it on the snowflakes.  

Inflammatory Adipose

Image found here. 

So I'm always looking something, anything, to deter me from scarfing enormous quantities of Christmas goodies, specifically fudge. Made by me. Hm. Maybe if I didn't make the fudge.........

Remember in driver's education classes when they showed the movie? The one that was supposed to deter us from drinking and driving? It worked for me. I can still see that awful footage of crumpled cars, and families sobbing, and blood dripping out of the driver's side of the vehicle. I have never gotten behind the wheel of a car after drinking alcohol. 

I need a movie or some other data that runs along that same premise, but substitutes eating sugar and dietary fat, for the drinking and driving thing.  

Today I came across this article,   The Role of Adipose Tissue Inflammation in the Etiology of Obesity and its Co - Morbidities  published by the Fred Hutchinson Cancer Research Center. It's well documented that adipose tissue, or fat, has the capability to create inflammation without assistance or stimulus from other tissues: 

Obesity is associated with a chronic low-grade systemic inflammation. A large number of studies have found that an increased body mass index correlates with increased plasma concentrations of inflammatory cytokines and acute phase proteins. This systemic inflammation is associated with insulin resistance leading to type 2 diabetes mellitus as well as increased risk of cardiovascular disease and certain types of cancer. Recent evidence suggests that this systemic inflammation is caused, at least in part, by adipose tissue. 

Now this is something to really think about. Of course this data is not suggesting that Sjogren's Syndrome is caused by obesity. However, the idea that every fat cell in my body is capable of adding to the inflammatory process already problematic in autoimmune disease is pretty darned repulsive. 

In this case, repulsive is good. 

Careful With That Flaxseed!

Image by KeRmo

Brrrrr! It is unusually cold weather here in the Pacific Northwest. My family back in the Midwest would probably call me a real wimp for making that comment, and they would be right. I remember those below zero days all too well, so our temperatures in the teens probably sounds balmy to them. However, now that I am completely acclimated to our milder temps here, this nippy weather takes some getting used to. I am running our fireplace every day and have clicked the thermostat up a few degrees. The air in our house is becoming much drier, too, since our furnace is running more. 

My eyes are really feeling the drop in humidity in this heated air. Time for me to review those things that help my poor scratchy eyes feel better. One strategy in particular, is increasing my intake of omega 3 fatty acids, both by eating fish such as salmon, but also by taking flaxseed oil supplements, as suggested by my doctor and also MayoClinic.com. Notice that the recommendation is made for flaxseed oil. 

When my doctor made this suggestion, I got on my trusty laptop and did a little research. I was surprised to read that whole flaxseed and ground flaxseed are rich in the precursor to omega 3 acids, but the whole and ground seed may cause unwanted symptoms in the intestines and other potential problems such as decreased clotting times and interference in hormone cycles for women. Again, these effects are caused when taking excess amounts of flaxseed, not flaxseed oil. This excerpt was taken from the Mayo Clinic's website: 

.....flaxseed or flaxseed oil taken by mouth may cause mania or hypomania in people with bipolar disorder. In theory, the laxative effects of flaxseed ( not flaxseed oil) may cause diarrhea, increased number of bowel movements, and abdominal discomfort. Laxative effects are reported in several studies of people taking flaxseed or omega-3 acids. People with diarrhea, irritable bowel syndrome, diverticulitis, or inflammatory bowel disease (Crohn's disease or ulcerative colitis) should avoid flaxseed due to its possible laxative effects. Nausea, vomiting, and abdominal pain are reported in two individuals shortly after taking flaxseed products by mouth; these reactions may have been caused by allergy.

Large amounts of flaxseed by mouth may cause the intestines to stop moving (ileus). People with narrowing of the esophagus or intestine, ileus, or bowel obstruction should avoid flaxseed ( not flaxseed oil). Individuals with high blood triglycerides should avoid flaxseed and flaxseed oil due to unclear effects on triglyceride levels in animal research. People with diabetes should use caution if taking flaxseed products by mouth, as the omega-3 fatty acids in flaxseed and flaxseed oil may increase blood sugar levels. 

One study reports that the menstrual period may be altered in women who take flaxseed powder by mouth daily. Due to the possible estrogen-like effects of flaxseed ( not flaxseed oil), it should be used cautiously in women with hormone sensitive conditions such as endometriosis, polycystic ovary syndrome, uterine fibroids, or cancer of the breast, uterus, or ovary. Some natural medicine textbooks advise caution in patients with hypothyroidism, although little scientific information is available in this area. Flaxseed and flaxseed oil may increase the risk of bleeding, based on early studies that show decreased clotting of blood. Caution is advised in patients with bleeding disorders, in people taking drugs that increase the risk of bleeding, and in people planning to undergo medical, surgical, or dental procedures. Dosing of blood-thinning medications may need to be adjusted. In animal studies, flaxseed has increased the number of red blood cells.

Autoimmune Marriage

Image by clix

We are enjoying the wedding celebration for our friends. They are both young, intelligent, deeply spiritual, and have the potential for a fabulous life together. 

On our wedding day, John and I also looked to our future with excitement and high expectations. We envisioned our lives together to be filled with love, adventure, careers, and eventually, children. For the most part, all has come true. Yet like everyone's life, what has also come to be is what was definitely not planned. 

For the record, this does not include my three children. We asked for them all, God bless 'em. 

Ah, yes, there were many surprises along the way in our 28 years of marriage. Jobs, houses, cars, dogs, cats, and even garter snakes...........have come and gone. Some with relief, some with regret, most with fond memories. 

What we didn't plan for all those years ago was the arrival of autoimmune disease in our marriage. We didn't expect the enormous changes that would happen in all aspects of our relationship simply because my immune system shifted into overdrive. The idea that either of us would be anything other than healthy and energetic was simply not part of the vision that we had planned. Doesn't everyone in their twenties feel the same way? As though invincible? We sure did. Yet, here we are, one of us feeling definitely less invincible than imagined and as a result, we both are changed.  

I think that we were fortunate to have twenty - plus years of marriage in really good health behind us before chronic illness showed up. Goodness knows we needed every bit of energy and vigor to survive the expected adventures that come with three kids, two busy careers and our marriage that matured and developed as we all did. I think John and I had built a solid relationship a little bit at a time. We were lucky that we had so many strong bonds forged before autoimmune disease began to place stress on those bonds. 

It took six months or so for us to realize that this disease was going to be with me for the rest of my life and we both went through radical changes during this time; I felt my body become changed in ways I had not thought possible; John felt frustrated at his inability to facilitate my return to good health. We both were concerned about the change in our income as a result of me leaving my job. John's already busy work schedule now had to include what was previously my share of the cleaning, laundry, and all the other daily tasks in every household. I felt guilty when I needed extended amounts of rest and resentful of my traitorous body. It was hard accepting help, but also hard to let control of so many things slip out of my hands. 

Somehow we have found a new normal. Somehow, after five years, we have made a tentative truce with Sjogren's. My part of the deal is to take responsibility for my energy and rest, to objectively observe my status day by day, to ask for help when I need it, and to resist the temptation to over - or under - estimate my abilities. Unfortunately, the largest part of the bargain requirements fall to John, which are too numerous to even begin to list, and I am unbelievably grateful that he has willingly shouldered his share. Somehow John and I found a way to continue to like each other through these difficult times, and our marriage has not only survived but strengthened, and for this I am grateful most of all. 

I am hesitant to slip into a smug we've got this all figured out mindset. We all know how quickly life can change, as I learned five years ago when my parotids swelled to chipmunk proportions and I felt as though I had been beaten with a sledgehammer. Who knows what tomorrow may bring? 

I am thankful, though, that for today, life has found  a balance of sorts. My medications and coping skills have beaten back some of the effects of this disease. I can laugh at myself again, and goodness knows there's plenty to laugh at. It took a long while, but I managed to move through the stages of loss and grief that everyone faces when dealing with a lifestyle change. I went through each stage kicking and screaming, but hallelujah! The good days outnumber the bad, and I am thankful that the scales are tipping on the positive side. 

My wish for our friend's brand new marriage is that thirty-some years from now, no matter what obstacles life will throw in their path, that both will be able to laugh and live and like each other still. 

I know they will. 

Almost Done

All we need is the white rose arrangement for the top of the cake, a cleaned-up table, a few candles, and we are done! 

Whew! 

Sugar, Sugar, Everywhere

I'm up to my elbows in cake batter and frosting. I am making a wedding cake for a friend, and it's been fun. So far. The plan is for a three tier cake, two tiers of chocolate cake with raspberry buttercream filling, and the middle tier a classic white cake. 

We will be heading out of town tomorrow for a long weekend. It should be a beautiful wedding. Everyone keep thinking good thoughts for me and this cake! I'll post pictures if it arrives at the reception disaster-free.....I suppose I'm tempting fate by posting these disastrous cakes and their pictures. Please, please, please, God, don't let this happen on Saturday...........

Tell it, Sjoggies

Image by juliaf

I received an encouraging email from the vice president of operations for the Sjogren's Syndrome Foundation last week. It seems that he had set a Google alert notification for information tagged as Sjogren's, and Reasonably Well showed up. 

He commented that there was a real need for public education regarding Sjogren's: 

"The more people that write about their struggles with Sjogren's, the more people will learn that this is a very serious and debilitating disease." 

I agree. So, c'mon Sjoggies - share your stories, your experiences, your joys and trials with others about autoimmune disease. There are multiple opportunities out there in cyberspace, but also in the real live world. In raising awareness, we can educate health care personnel, we can support each other, and we can diminish the isolation and confusion that many undiagnosed autoimmune disease patients experience. 

Low Batteries

Image by chumney

I have an inexpensive battery powered toothbrush. Last night, when I was getting ready for bed, I was running on fumes. Putting up Christmas decorations and doing some shopping had run my energy reserves down to empty. I picked up my toothbrush, turned it on, and realized that the batteries were dead, both my toothbrush's and mine. I stood there wondering how I was going to brush my teeth. 

Hmm. Up, down, up, down. Oh, yeah. That's how manual toothbrushes work. 

Yet another example of my life's equation: Tired = Stupid.  

Mirror, Mirror, on the Wall

Image by Mary Cassatt (1844 - 1926)

After reading my last several blog entries and gee, I guess all of them would qualify, I am feeling somewhat taken aback by all my narcissistic writing. How do I feel? What am I doing today? What did someone else do or say or think about me? And how about my ingrown toenails and hairy legs and unibrow? Let me tell you all about my opinions and problems and thoughts and blah blah blah blah......

In my defense, it would be presumptuous of me to assume what others'  thoughts and feelings are. Despite feeling self-absorbed, focusing on my response to autoimmune disease and sharing how I feel, think, and react to a life-changing disease may help others to realize that they are not alone. Even though their thoughts may not be as weird as mine, it may help to know that someone else out there feels profoundly changed by this disease.

Socrates said, "The unexamined life is not worth living." 

I've got that base covered. 

Report Card

Image found here. 
So here I am, the holiday weekend finished, sitting in my yoga pants. (Which, incidentally, have seen very few actual yoga postures). I am sitting here in my yoga pants because they are very forgiving of a turkey and stuffing and pumpkin pie filled middle. Thank you, whoever you are, for inventing stretchy spandex yoga pants.

After every major holiday ever since the onset of my autoimmune disease, I find myself looking back over the holiday and evaluating myself, almost like a teacher grading a book report. Most major holidays have been followed by a major crash over the past several years, so my previous grades haven't been good enough to display with pride on the refrigerator door. 

Julia takes the red pencil from behind her ear and examines her behavior over the past week: 

I'd give myself a B to a B plus this go-around on managing my energy reserves, which is a huge improvement over last Thanksgiving. This year, I felt more comfortable taking time to sleep and rest when I needed it. I also was more bossy, actually. Making a huge dinner was much easier when blessed with a houseful of people who have great cooking skills and are willing to take directions and wash dishes. 

I think I earned a D on portion control. This wasn't unexpected, unfortunately.  I make a great pumpkin pie, so what can I say? 

I'd have to give myself a C minus in dignified conduct after participating in more than the usual amount of silliness, which is probably directly related to the D in portion control, specifically in indulging in cranberry slush, a yummy adult beverage (for those who aren't familiar with this holiday cocktail). A shoot-out involving toy bow and arrows, nerf guns, and ping pong balls ensued after a few rounds of these tasty frozen drinks. I'd just like to say for the record that taking the baklava hostage was NOT my idea. 

My best grade for the holiday was earned in the appreciation and gratitude department. I remember one afternoon settling in bed for a nap, and hearing family and friends downstairs laughing and enjoying time together. Two years ago, I would have felt resentful that I would have to retreat from the festivities to rest.  I'm glad that I didn't feel that way this year, but just enjoyed drifting off to sleep while hearing happy noises. 

I guess that means I got an A in Thanksgiving.