The joy of forgetfulness

One of the curses of Sjogrens is the memory problems. When I was in my late teens, my (now ex-) husband would get mad at me because we would hop in the car to go somewhere, and then I couldn't remember where we were going. We were very mature back then. :/ Even now, I sometimes miss my turn or exit because of that.

However, this inability to remember can be a blessing too. The bullies in elementary school? I don't remember who specifically they were. It was pretty much everyone, but surely there was a ringleader, right? No idea... Also, I really do leave work at work and home at home. I mean, yeah, when work is extra stressful, I sometimes come home and vent, but once I move on, it's forgotten until I go back to work. I don't lie awake at night mulling problems anymore. I sleep well. The joy of forgetfulness, indeed.

Outrage

I was very relieved when someone finally listened to me and the diagnosis was - more or less - made official. I first reported symptoms to a doctor when I was 21. That doctor, along with so many others along the way, was very quick to chalk it up to depression. Other diagnoses from well-meaning but lazy doctors: "sicca" (well, duh - sicca is just the medical term for dry eyes and dry mouth), "you need more sleep," allergies/asthma/irritants (this one came from an allergist, so I wouldn't characterize it as "lazy"), you need to lose weight...

"You need to lose weight." According to so many doctors, this is the simple answer to all my problems. I won't deny that it IS a simple answer to some problems and it would probably relieve many symptoms to some degree. The problem is that it's too simple. I heard it over and over for many years - all the while, my thyroid has been shutting down and nobody has noticed that I have no eyebrows? I want to know why no one ever thought to look specifically for a thyroid problem when I'm doing Weight Watchers and other things and I can't lose more than 30 pounds. Ever.

I'm pretty sure the answer is that our doctors are as biased as society in general. They all watch the news reports. They all read the nasty comments written by anonymous readers and they inherently agree, even when their medical training says otherwise. They all know that extra weight is due to eating too much and not exercising enough. Everyone knows a person only needs to exercise and watch their diet and the weight will come off. It's not a diet, it's a lifestyle change. The media feeds us a steady diet of Jared (the Subway guy) and Jennifer Hudson, the Biggest Loser, Extreme Makeover (Weight Loss Edition), and plenty more. But what they don't give us is the statistics.

A Google search reveals that every 3rd person in this country is classified as obese. It's an "epidemic." It's in the headlines every day. What are we gonna do about it? Revise school lunches. Okay. Now the kids are having a hard time concentrating at school because they're hungry. Better we should fix their obesity problem at lunch. (Never mind we have no control over supper, breakfast, or after-school snacks, but okay.)

Obesity does not guarantee a person will develop health problems, though. It is not the sole cause of diabetes, and plenty of fat folks will never develop diabetes. Not that the media wants you to realize that. The other side of that coin: the media, and society, do not want you believe that excess weight is caused by medical problems. People are expected to conform to the belief that if you carry around extra weight, it's because you failed at self-control. It's your own fault. Simple as that.

It isn't that simple, though, and our medical community needs to pull themselves out of that mindset. The CDC website gives statistics on obesity and strategies to combat it. All of the strategies are lifestyle-oriented. Lose weight, eat healthy, exercise, get kids moving, take the vending machines out of schools. Not one bit of information about medical conditions that cause weight gain or prevent weight loss. Not one suggestion to see a doctor to rule out any such possibilities. My favorite comedian, Bill Engvall, has a joke on his "Here's Your Sign" CD about going to the state fair. He makes fun of a grotesquely fat women with some skinny dude "just begging for scraps." He admonishes her - if you look like that, don't go to the fair and eat like that. And then sarcastically says "I'll bet she's just got a thyroid problem." I admit it - yeah I laughed at that. Until I actually developed a thyroid problem. And that joke makes me think everyone is judging me. I DO have a thyroid problem. And I'm pretty sure nobody is buying that excuse. I'm just glad I live in the South, where people are less likely to say something to me about it.

By the way, if I had known I had a thyroid problem 10 years ago, I could have prevented most of the weight gain I've had over the last 10 years. If my doctor had just run some tests when I said "hey, I get really cold and night and can't get warm" I might weigh 100 pounds less than I do. I'd still be overweight, but perhaps more acceptably so. I wish I could sue that first doctor for the cost of bariatric surgery in order to correct her poor medical care.

But what about those statistics? It's very easy to find statistics on obesity. 1 in 3 adults is obese. 2 in 3 are overweight. Ad nauseum. Where are the statistics on how many people try and succeed at losing weight? How many people manage to keep it off? Hidden. Buried under the OBESITY/MAYHEM headlines. I was able to find an unattributed statistic that more than 90% of weight loss attempts fail. Everyone wants to believe they're going to be the one that succeeds, and that's important if you're going to try. But why do doctors believe it so much that they fail to do due diligence on the causes of the weight problem? Why would insurance companies rather pay for diabetes medications, amputations, and cardiac care rather than simply paying for a relatively inexpensive surgery that could prevent all that?

Why, indeed. I am outraged. And so should everyone else be. Our entire healthcare system is substandard because of bias.

Diagnosis

According to the Sjogren's Syndrome Foundation, it takes an average of 7 years to get a Sjogren's diagnosis. 7 years? I'm jealous. Do you know how long it took from my first symptoms until diagnosis? About 25 years. Yes. 25. If you cut it back to my first complaint to a doctor, that knocks it back to 20 years.

Why so long? The biggest reason is that the hallmark symptoms of Sjogren's - the dry eyes and dry mouth - are treated by optometrists and dentists, respectively. These two don't usually report anything to your family doctor, so no one ever makes a connection.

For me, I was finally given a (tentative) diagnosis about 2 years ago. I say "tentative" because I only have about half of the required "markers" for Sjogren's. They run four tests - two for saliva production and two for tear production. For the "spit test," they were able to determine I didn't produce enough saliva, but the lip biopsy was inconclusive. (A lip biopsy is where they take a couple of salivary glands out of your lower lip for testing.) The same thing happened with the tear production tests. The less invasive test found low tear production, but the more invasive one didn't. So my diagnosis is based on a "partial positive" and other symptoms I can observe and report to my doctor.

So what are my symptoms? Everybody experiences it differently. Here are the big ones I can think of off the top of my head.

• Dry eyes
• Dry mouth
• Dry sinuses
• Fatigue
• Heartburn/reflux
• Arthritis, particularly in my lower back
• Headaches
• Irritable Bowel
• Cognitive regression (the dreaded "brain fog")
• increasing memory lapses
• inability to focus

I'll discuss these in more depth in future posts. For now, here's a time line on how they appeared:

High School:

• Long slurps at the water fountain between every class.
• Mild lower back pain
• Cheeks that would turn bright red and burning hot for no apparent reason
• Fatigue
• Early bedtime every night - in bed by or before 9 pm without parental involvement.
• Inability to get up for school some days, or needing to leave school early
• General weakness (occasional)
• Frequent headaches (started at age 9)

Early College:

• Dry eyes
• Heartburn
• Fatigue
• Frequent headaches

Later College - partial remission

• Perfect attendance
• Superb concentration
• straight A's
• organized study
• methodical practice on my trumpet
• 3 jobs
• Early start to the day - on campus voluntarily by 7 a.m. to practice
• Dry mouth that was particularly noticeable and bothersome

Early career:

• Fatigue
• Dry sinuses
• Dry eyes
• Dry mouth
• Frequent headaches

Grad School:

• Dry sinuses
• Dry mouth
• Dry eyes
• Frequent headaches
• Fatigue
• Heartburn
• Cognitive regression, memory lapses
• Hypothyroid

2nd career:

• Dry sinuses
• Dry mouth
• Dry eyes
• Dry skin
• Daily severe headaches
• Increasing fatigue
• Heartburn/reflux
• Hypothyroid, severe weight gain, hair loss
• Increasing cognitive regression and memory lapses
• Increasing arthritis pain
• Pulmonary Embolism

After the Pulmonary Embolism in 2010, all of my symptoms kicked into high gear and I started earnestly searching for an answer. Well...it's more like increasingly frequent trips to the doctor forced someone to sit up and pay attention.

Sjogrens Sydrome is not for sissies

I'm C Ges and I have Sjogrens Syndrome. (Hi C Ges...) Like many invisible illnesses, people simply don't know what it's like, so my goal is to try to change that. If I can do that for just a few folks, I think it will be worth it.

A few years ago, I read a book by Amy Silverstein called Sick Girl. It was an autobiographical book about what a heart transplant is really like. She didn't skimp on the ugly parts, or the weird. It was not the usual disease book, where the author tries to stay positive and say inspirational things and encourage others. As such, it's not for everyone. But it was really honest, sometimes brutally so. I couldn't put it down.

I'm not easily influenced by typical encouragement or inspirational writing. I don't read poetry. Heck, I won't even read a greeting card unless it's funny. I'm not shallow. But what speaks to me is realism and truth. These are common qualities in good humor. They're what attracted me to Silverstein's book. And these are what I'm aiming for with this blog.

I'm going to talk about Sjogrens (and other issues as they come up) and how it affects me. I'll talk about the memories of strange symptoms. I'll talk about how they've evolved. And I'll talk about how all this gets messy when other people and outside influences are involved.

This will probably be mostly matter-of-fact, but there will be some anger, and bitterness, and reflection, and humor too. There's so much to talk about, I should have enough material to keep me going for years. I just need to, you know, keep going! Til next time...