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I’m not alone in living with Sjögren’s Syndrome

Friday, September 2nd, 2011 by admin

Last February I was diagnosed as having Sjögren’s Syndrome, a chronic autoimmune disease in which my body attacks moisture-producing tissues like tear ducts and saliva glands. Hadn’t ever heard of this disease before then, but I guess I wouldn’t have without knowing someone who has it–I’m not a doctor, after all. Don’t even play one on TV.

Since my diagnosis however, I’ve come upon some more people who have it. This feels kind of like when you finally choose your new car, feeling as though it’s unique and wonderful, and then you begin noticing many more of the same car on the road, in the neighborhood/parking lot/drive through. My friend Dannette, who lives in Arizona, knows someone who was just diagnosed with Sjögren’s a few months ago, and now of course, there’s tennis player Venus Williams, who was diagnosed just two weeks ago. I’m not feeling very special or unique anymore, dangit (pouting). Since better than 4,000,000 Americans have Sjögren’s, I guess I was never alone to begin with. It’s one of the most-common autoimmune disorders, and 9 of 10 patients are women.

Sjögren’s causes a collection of symptoms which include dry eyes and mouth, and can cause muscle and joint pain and lack of stamina and energy (which Venus and I both share, so I feel closer to her already!), as well as damage to the tissues of the eyes, mouth, stomach/digestive tract, kidneys, central nervous system and lungs.

Due to a shortage of saliva Sjögren’s patients will have difficulty chewing and swallowing at times, and low saliva production also makes dental problems commonplace. We’re also more susceptible to lymphoma. Also, a piece of dust or a hair in our eye isn’t just a temporary discomfort; tears help flush impurities and foreign objects out of the eye, helping prevent injury and infection, but Sjögren’s patients don’t have that built-in ‘flushing’ capability anymore. So a piece of dust may carry bacteria into our eye, and scratch the cornea when our eyelids scrape it back and forth over the surface. I carry eye drops, mouth spray and now nasal saline spray to mitigate the symptoms.

It’s not unusual for a Sjögren’s diagnosis to take 6 1/2 to 7 years, because the individual symptoms are easily mistaken for something else, like asthma. In fact, Venus had been misdiagnosed four years ago with exercise-induced asthma, but the asthma medications never helped her. It was only after unsuccessful treatment for asthma, combined with her enlarged and painful joints and extreme fatigue, that her doctors put them all together and discovered she has Sjögren’s.

I have no idea how long I’ve had Sjögren’s, and I’ll probably never know. I’ve been hurting and dragging my sorry, tired ass around for years, but my diagnosis back in February was the result of a very pointed problem with my parotid salivary glands: They were extraordinarily painful, and so swollen that I looked like a short John Goodman in drag.

If I saw something I wanted to eat, my parotid salivary glands would of course try to do their job and flood my mouth with saliva–and that resulted in stinging, twinge-y pain, truly a reverse-Pavlovian experience. Having had a gallstone before, I compared the sensation to the pain of a gallstone attack and guessed that I had ‘stones’ which would occasionally obstruct my salivary glands. Granted, this twinge was on either side of my jawbone, and the other was in my gut, but somehow it felt similar.

I couldn’t have imagined the pain and inflammation was due to my own white blood cells trying to kill my salivary glands.

I visited my regular doctor, who saw my unusually-square jaw and said “Oh my gosh, I’m going to get you to a specialist TODAY.” That was on a Friday, but amazingly by the end of the day I was being seen by an ear, nose & throat doctor who worked me in to her busy schedule.

She examined my mouth and said my parotid salivary glands were not obstructed, nor were they oozing pus as they would if infected (thank GOD and all that is holy). On the medical history form I’d filled out, she noted that I’m hypothyroid due to Hashimoto’s Syndrome, which is an autoimmune malfunction where my body attacked and killed my thyroid. She said she was ordering blood draws to check for Sjögren’s Syndrome, another autoimmune malfunction, and sent me home with prednisone and an antibiotic, just in case.

I went Monday for the blood draw. The lab tech, a kindly woman who’s drawn blood for me many times before to monitor my thyroid and cholesterol levels, had a bit of trouble entering the test coding; when she saw what the draw was for, she clucked and told me she was sorry. At that point, I was a bit dismayed at her reaction because I didn’t feel critically ill and had no idea what a diagnosis of Sjögren’s would mean.

Went back to see the ENT with my Pumpkin in tow, and we laughed and joked while waiting for her in the examining room. Yes, my blood showed the antigens for Sjögren’s, and also for rheumatoid arthritis. No ‘cure’ for it, just treatment of the symptoms and therapy to mitigate the disease’s effects, which of course included prednisone.

It was truly and actually a relief to know that there was something truly wrong with me. I’ve been feeling like walking garbage for a long time now, but each of my symptoms seemed commonplace and explainable by everyday causes. I attributed all my aches and pains to osteoarthritis, and my dry mouth to my relatively new job in a call center–essentially, I talked for eight hours a day, so whose mouth wouldn’t be dry?

During her Good Morning America interview a couple days ago, Venus also said that after suffering for so long and not knowing why, her Sjögren’s diagnosis was a relief. Now she can concentrate on treating her Sjögren’s effectively, and recovering from it as much as possible. I can identify with that relief.

But what then? Because now that we know what we have, we can rest easy knowing that we’re not crazy or hypochondriac; medicines can help us manage the symptoms, and we know that there will be times when we can’t do the things we used to do.

But the fact remains that we’re no longer functioning the way we used to, that there IS something wrong with us. With that knowledge comes an consciousness that we are finite and mortal and when that realization finally hits, it is a sobering, sad day–or at least, it was for me. I don’t know how Venus feels, but I can imagine that the pride and confidence she once had in her amazing body and athletic talent has taken a blow.

Sjögren’s doesn’t mean that we can’t be physically fit and happy and healthy otherwise, but it means that we will have to change some behaviors and ideas to accommodate our new physical status. I hate to use the phrase “suffering” to describe my experience because it seems lurid and hyperbolic, but that’s what’s happening: I am ‘suffering’ with this syndrome, and so is Venus, and so are the other 4,000,000 of us in the U.S. So in order to thrive again, we must learn to adapt.

MinuteRant: Smokers and public airspace

Sunday, June 12th, 2011 by kara

I really have got to learn how to calm down and ‘let things go’ but this is something that’s been bugging me for quite a while: Smokers who insist in burning their cigarettes in public airspaces.

I understand that it’s an addiction, and that you need to do it regularly. HOWEVER. Must you smoke immediately outside the ONE DOOR at work through which I must enter? Prevailing winds carry the smoke downwind of the door, so that I have to begin to hold my breath when I’m still 30 feet away from scanning my badge and closing the door on all that smoke. NOT pleasant. And it’s not like I can choose to use another entrance, because trust me, if I could, I would do just that.

And when you’re smoking in your car, can you PLEASE keep the smoke inside your vehicle with YOU? I truly do not want to smell the byproduct of your addiction in my own vehicle, so keep it to yourself. It kills me to see someone light a cigarette, and then dangle the lit cigarette out the damned window, without actually drawing on it. The Pumpkin and I were out doing some errands today, and we saw a woman in her car at a stop light sticking her left hand with a lit cigarette in it out the window, for the entire span of the traffic light. IT’S NOT INCENSE, YOU’RE NOT IMPROVING THE AMBIANCE OF THE ENVIRONMENT AROUND YOU, AND IF YOU WANTED THAT DAMNED THING ENOUGH TO LIGHT IT, THEN STICK IT IN YOUR OWN FACE AND SMOKE THE BLASTED THING. Preferably with your car windows rolled up.

It’s not as big a deal to me as it used to be, now that I have air conditioning in my vehicle and can roll up my own windows, but it still ticks me off when smokers insist on dangling their smouldering cancer sticks out their car windows. If you hate to keep it inside the car with you, what makes you think the rest of us will accept having it out in public with US?

Oh, and don’t throw your damned cigarette butts out the window, either–they take considerably more time to rot and return to nature than something like a banana skin and will stick around considerably longer, so STOP LITTERING.  Endrant.

My body betrays me

Wednesday, April 6th, 2011 by kara

For the most part I’ve always considered myself healthy. Yeah, I have exercise-induced asthma, but I’ve overcome that by avoiding exercise (grinning). I have a sensitive stomach, but everybody in my family is that way, so I just use a lot of over-the-counter antacids and anti-diarrhea medications, and don’t eat the day before a really important or stressful event.

I am usually in pain somewhere on my body, but I’ve always attributed that to my foolish youthful years when I engaged in behaviors like body building (trust me, ladies, even if you can leg press 450 pounds, that doesn’t mean you SHOULD), mountain biking (my friend Dawnn went with me off-road ONCE and refused to go again, stating that I was ‘crazy’) and firefighting (to this day, all I have to do is press on my right shoulder and I remember so clearly helping to lift a grass rig pump back onto a truck and feeling something ‘rip’ inside it). That shite all catches up with you eventually, so try to take care of yourselves, Dear Readers.

And if you look back a few posts, you can read about how I tend to faint pretty easily in the face of bodily insult, even though I don’t consider myself to be a ‘tightly-laced’ and fragile woman.  I’m hypothyroid due to an autoimmune malfunction, and just recently I was diagnosed with Sjögren’s Syndrome, another autoimmune disease in which my immune system attacks my moisture-producing glands.  It causes dry eyes, dry mouth, dry you-know, and general low-level misery.

Oh, and I’m also extraordinarily lazy and overweight, both of which may be either causal or resultant, depending on what type of mood I’m in that day. And don’t forget my history of depression, and a bunch of other stuff that has happened along the way: Carpal tunnel syndrome, gallstones, tonsillectomy…you get the picture.

I’ve always just dealt with things that come up by either a.) Ignoring them, or b.) Taking massive doses of over-the-counter meds to alleviate symptoms and making token efforts to improve my general health. There have been many bottles of vitamins purchased and discarded years after their expiration dates, having languished unswallered in the fridge.

Huh. (Counting on fingers, moving to toes.) All things considered…I guess I’m not very healthy. But I’ve never thought of myself as sickly.  At least, not until the Sjögren’s diagnosis.

It feels like this all started back in December, when I started bloating after I ate anything. Remember that I’ve had periodic instances of really bad stomach pain before, but a course of OTC omeprazole usually takes care of that. But the bloating…mygod. It’s difficult to BREATHE when one’s stomach is distended fully by whatever’s fermenting in there. My regular doctor advised cutting out dairy to see if the bloating was caused by lactose intolerance, but that didn’t make much difference, so I went to see a gastroenterologist.

Way back when I was 11 years old, I had really bad stomach pains which my doctor diagnosed by treatment–he said I had gastric ulcers, handed me a little bottle of Maalox and told me to drink some whenever my stomach hurt. At my first appointment in December 2010, my new gastroenterologist told me that this is not a valid method of diagnosis, that only an endoscopy can confirm stomach ulcers.  Okay, it’s not my fault that my childhood doctor didn’t scope me 31 YEARS AGO, and that I was not bright enough to insist on a visual examination of my digestive tract to confirm the diagnosis, so let’s move on to the present day, shall we? My new gastrodoc said we’d start with a nuclear study of my gastric emptying function, and if nothing was wrong there, we’d move on to scoping. That test was done mid-January, and showed nothing out-of-the ordinary.

In the meantime, I’d been having twinges, like little excruciating muscle cramps, in my parotid salivary glands. Whenever I’d see something appealing, I’d salivate, and then I’d feel sharp pain in my saliva glands. Weird, kind of reverse Pavlovian response. I pretty much lost my appetite due to the pain, but my saliva glands kept swelling and I kept chewing a lot of gum at work, because my mouth was so dry. (But don’t worry, Gentle Readers, I found my appetite again. Dangit.) I suspected a stone or stones blocking my salivary glands, kind of like what happened in my gall bladder, but on a much smaller scale. I didn’t put the swollen parotid glands together with dry mouth, dry eyes, fatigue, and all-over general pain.

On February 17, my glands were so swollen that I couldn’t see my earlobes when I looked in the mirror. I had a big square-jawed face like John Goodman, and wearing my headset at work or even turning my head hurt enough to make me pout. I visited my regular doctor the next day (Friday), and she somehow got me an appointment that same afternoon with an ear, nose and throat specialist, who picked out my type of thyroiditis and guessed Sjögren’s. Blood testing that following Monday confirmed I had both the Sjögren’s and rheumatoid antibodies.

So there actually IS something wrong with me. Oddly enough, hearing this diagnosis didn’t bring me down; it was actually a relief to know there was a reason I had been feeling so universally crappy.  My ENT put me on prednisone to manage the symptoms and I had my first appointment with a rheumatoid specialist on March 30.  Learned a lot about Sjögren’s and how I can get rid of the prednisone eventually, using other medications to manage the troubling symptoms.

My gut issues may or may not be related to Sjögren’s, but I’m addressing those as well.  Colonoscopy and endoscopy are scheduled for tomorrow (I’m making light of it by saying it’ll be like when they dug the Chunnel, because they’ll meet in my middle) so hopefully my gastrodoc will find out what mutant goodness resides there.

There is no cure for Sjögren’s Syndrome, but I can’t picture it changing my life very much. After all, I’m not a competitive sportsman or working as a volunteer firefighter anymore, so I don’t have to have a tremendous amount of stamina or physical capability. (I am very glad, however, that I got my eyes LASEK’ed back in 2007, because I probably wouldn’t have qualified for the surgery now with decreased tear production.)

It’s just really…disappointing, for lack of a better term, to find out that I have this weakness. It feels like my body has betrayed me. I don’t trust it anymore, especially now that I know there’s actually something wrong, and every little twinge, ache or oddity I experience is now suspect. Last night, for instance, I had a 10 ounce bottle of citrate of magnesium as part of the scope prep, and after I drank it, I had a deep ache in my back, between my shoulder blades. I couldn’t help thinking about how women can experience back pain as a symptom of heart attack, and I wondered if I was having a heart attack (foolish idea!) or the citrate of magnesium was tweaking my kidneys. And DAMMIT, I do NOT want to have to worry about stuff like this.

I guess given how much trashy food, Diet Coke and alcohol I’ve consumed, toxins I’ve exposed myself to, and all the late nights and hard work I’ve inflicted on my body, that it really doesn’t owe me much in terms of fidelity. And I’m trying to eat better and treat it more kindly now, but I guess I should have been doing that all along, eh?

Alternative to no-calorie sweeteners?

Sunday, April 3rd, 2011 by kara

Recently I was diagnosed with Sjögren’s Syndrome, an autoimmune disorder which screws with my moisture-producing glands. Quick-and-dirty version is that my body is trying to kill any tissue in itself that produces saliva or tears or mucus or digestive fluid or the like. More on that particular joy later.

My stomach is also giving me grief, and whether this is related to the Sjögren’s or not, I’ve had to make some changes in my intake. It seems that I can no longer tolerate either the carbonation or the artificial sweeteners in the gallons of Diet Coke or Coke Zero which I used to drink on a daily basis, so I must move to uncarbonated beverages which do not contain aspartame or sucralose. Given that I absolutely detest the “sugar mouth” bad-breath aftertaste I get after drinking beverages sweetened with sugar, I must then move to either an unsweetened beverage, or one that’s sweetened with stevia, which was recommended by my rheumatoid specialist.

Just to add to all this fun, I have also found it necessary to drastically cut down on my caffeine intake so that my freaking heart does not break out of my sternum and gallop off without me. Apparently this must mean my days of being able to chew No-Doz for faster absorption without any undesirable side effects are also behind me. Gettin’ old, fallin’ apart…

The obvious successor to Diet Coke/Coke Zero is iced tea, which is readily available unsweetened commercially, both in fountain and bottled versions; but what is NOT so readily available is DECAFFEINATED unsweetened iced tea. Top that off with the fact that I’ve become a bit of a tea snob, and I’ve become really difficult to quench.

So when I know I’ll be away from home, I provision myself with home-brewed, unsweetened, decaffeinated iced tea.  I’ll fill up my 32-ounce Speedy-Q travel mug with ice, wedge a straw in there, and fill the negative space with freshly-brewed decaff iced tea. I’ll fill up a metal Sigg-like bottle with the same, and the travel mug helps retain the ice cubes, so that during an eight-hour work day I might have to get just a little more ice from the machine at work. I try to avoid the water and ice at work, however, because it tastes to me like PCBs and carcinogens. Yes, I know I’m probably being foolish, but I can’t help the image of dumping industrial waste down my throat, and with the Sjögren’s I’m drinking quite a lot of whatever.

“But Kara,” you ask, “Why don’t you just drink water or fruit juice?” Good question.  I do drink water, and if it’s from my refrigerator (in-line filter + very cold) or from a Brita filter (very well-filtered + very cold) or from a refrigerated bottle, I drink a lot of it. But sometimes you want something with a little more flavor, like Coke Zero…mmm…no.  NO. NOT like Coke Zero.  Like orange juice, or water with lime twist, or…tea. Only problem with fruit juice is that a lot of it isn’t JUICE, it’s high-fructose corn syrup, and why would I want to drink a ‘fruit cocktail-style beverage’ that has more sweetener than a Pop-Tart? I’m trying to take care of my pancreas, here. Adult-onset diabetes is common in my family, and I’m really not wanting to hasten that at all, at all.

So I’m drinking more water, and experimenting now with things like iced mint tea sweetened with honey. I’m still working on where to get stevia in sufficient bulk quantities so we can experiment with mixing up a gallon of Kool-Aid to see if that will work. Yeah, I know, it’s kind of blasphemous to mix a health food with Kool-Aid, but my 12-year-old palate MUST have sweet. I’ll let y’all know how THAT goes.