Sunday, November 29, 2015



Off To The Symphony

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    When you are chronically ill, you are trained to pay attention to your body. Learning the signs and symptoms of an impending flare up is key to staying healthy and being able to either stop a flare up or start treatment and kill it off sooner. But have you ever truly listened to your body? I mean really listened…
    The human body makes some of the most unique and distinct sounds on the planet. And we can learn a lot about our bodies by knowing these sounds and what they mean for us. Now, being a dancer, I was immediately interested in the fact that our bodies can ‘pop and lock’. (not the hip hop term.) Also called Crepitus, it means the crackling, popping sounds our joints make. One cause is swelling that creates air bubbles in the joint fluid. People often develop the habit of cracking knuckles due to this build up of air bubbles and pressure.
    Crepitus is also caused by swollen bursa(fluid filled sacs that lubricate our joints) that make it necessary for tendons or ligaments to ‘snap’ over them, or can just be the sound of bone grinding on cartilage. Most of us with Sjogren’s, RA, or  almost any AI disease know this sound. It’s the percussion section of our body’s orchestra.
    Another percussion instrument would be our jaw. The crack of TMJ is a sharp sound often accompanied by a click as our lower jawbone shifts places. Again to swelling, the cartilage or the temporomandibular joint itself is out of alignment. Minne has clicked so loud, my family has heard it during movie night. For some reason, they all said “Owwww!” But it didn’t faze me one bit. I am used to it. They are not. But they crack their knuckles-a sound I hate-so I guess we’re even!
    Now I’ll add the bells of percussion. Tinnitus. Ringing of the ears. That’s simple. Our nerves are being stimulated to register sound even though none is there. Neuralgia? Most likely unless there’s been an injury. Solutions? I wish!
    OK. Let’s move on to the wind instruments. NO! Not that! (yet…) Have you ever been sitting round and suddenly realised that the high pitched whistling you hear is coming from you? From your nose? Do you have allergies? Good! That’s a big cause for ‘whistling nose syndrome’. But if you don’t have allergies, take heart. The inside membranes of your nose can become inflamed. Especially with Sjogren’s Syndrome. And that makes a smaller passageway to breathe through. Which causes whistling.
          Hiccups and gurgling are next. More swelling? Gotcha’! These are more due to excess air in our tummies and being hungry than being swollen. Hiccups are an over excited Vagus nerve that spasms the diaphragm. Sjogren’s can cause neuralgias of all different types as well as muscle spasms so extra bouts of the hiccups aren’t a stretch. And although, gurgling can be swelling in the intestines pushing stuff around too. And we all know that feeling. We also know the feeling of an overactive digestive system the produces excess gas. Which will also cause gurgling. Or worse…
    Which brings us to the brass section. And belching! Belching can be so embarrassing. And I for one do it way too much and way too loudly! Being that the main reason people burp is swallowing air when we eat or drink, you would think just being careful would eliminate it. But no. Swelling in my stomach, gastroparesis, and medications can all play a part. Of course! Facepalm. My husband now calls me his sailor wife. I used to be his dove. Which would you rather be?
    But though belching comes out hard and loud, it is not the worst of the brassy noises our bodies make. (yes, now!) Flatulence. Good old cutting cheese. (I don’t do well with knives either-haha) Eat healthy, people will know it. Thank you lower GI! But irritation and swelling from our diseases can do it too. And the flatulence will get it’s aroma dependant upon the cause. I’m lucky. I live with three men, two under the age of 25, and a dog, so I always have someone else to blame!
    And there’s one odd noise left that everyone knows. Snoring! It’s literally the sound of the soft tissue of your mouth and throat vibrating as you breathe during sleep. In and of itself, it’s not an issue, but it can cause huge issues such as lack of sleep, lower oxygen levels, and a condition called sleep apnea in which you frequently stop breathing during sleep. All these wreak havoc on your health. So though snoring is just a sound, it signals more than your wife throwing a pillow at you and kicking you to the couch!

    So now you know the most common noises our bodies make and why. Maybe we can appreciate them more in terms of music than just in terms of annoyance or pain. Maybe not. I know our bodies do so much to us that it can be hard to learn to laugh at constant burping or lying awake all night snoring. But then there’s this. As most of us are women, I’ll leave you with a last thought. When was the last time the woodwinds of your orchestra ‘queefed’? Come on! We’ve all done it...

Tuesday, November 17, 2015



Tooth Talk

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    So today I had a dental appointment. I don’t like dental appointments. i know that sounds like a normal thing to say. Who likes going to the dentist right? They are associated with pain, drills, scrapey thingies… But that’s not why I don’t like them. I don’t like them because my teeth have given me more problems than most people ever have in their lifetime.
    This is how it is for a person with Sjogren’s Syndrome. And all because the disease attacks our salivary glands. Sjogren’s attacks any moisture producing part of the body, but is most well known for attacking the tear glands (lacrimal) and the salivary glands (biggest being parotid). So our mouths are constantly dry. Our teeth live in an atmosphere devoid of the moisture bath that they need to remain healthy. And strong. As a result, Our teeth become the source of a huge amount of stress.
    Imagine eating breakfast before work one day and as you are chewing, a tooth falls apart. You are probably assuming (remember the old saying…) that the meal being eaten must be a very crunchy one. Nope. It was cheerios. In milk. I lost almost a third of one of my molars that day. Or the day I decided that chewing Trident White dental gum would be a good idea. It helps dry mouth, strengthens enamel,  and whitens teeth at the same time! What could go wrong? Yup. The other molar broke.
    These are not extreme examples either. This is the way Sjogren’s works. It weakens teeth by drying them out and allows bad bacteria to sit on teeth. It does this by hurting the glands that produce saliva. Saliva bathes the teeth, keeps them moist and strong,  and washes the bacteria off of them preventing cavities. During the first 3 years I was diagnosed, I had 14 cavities. 14! I had never had one in the 29 previous years of my life. I have since endured 20 more cavities, 3 crowns, multiple replacement fillings (yes, fillings can just pop out at will), and one replacement crown.
    But that is not all Sjogren’s does to a person’s mouth. Have you ever had a cold and awakened with your tongue stuck to the roof of your mouth? Those of us with Sjogren’s have that happen while we talk. When we get colds and have to breathe through our mouths at night, we wake up with tongues so dry they are literally burnt. I cannot for the life of me explain the physics of that but I can say that on those mornings, orange juice is the enemy!
    We also frequently get ulcerations of the mouth. Although that is a symptom more closely associated with Lupus, the constant dryness can cause sores and ulcers to crop up. Yeast infections of the tongue are also a common occurrence. Saliva is “formulated” to keep bacteria and yeast overgrowth at bay. Without enough of it, we develop all sorts of problems with random infections that “normal” people don’t have to deal with. And if we get an infection, getting rid of it is not easy. Our immune systems don’t work right, remember?
    So how do we deal with all this? Personally, I have a toothbrush and special toothpaste in every bathroom to allow me to brush my teeth whenever I feel the need to. When I worked, I had one at the office too. I carried one in my car and my purse. Same with floss. I see a dentist 4 times a year. And most importantly, I drink water all the time! If my body can’t keep my mouth moist enough, I have to help it. So I drink to bathe my teeth. And to be able to finish my sentences without choking, but that’s another story!

By the way...My teeth were perfect today!

Saturday, November 14, 2015



It’s Just Words…

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    Not to brag or anything, but I’m damn good with words. I’m a writer. I trained for this. I went to… Ya’ know… That place and I got my degree and everything in English and creative writing. So words are my thing. And I know lots of words. So when I’m at my… umm… typie thing here, I can write and sound very smart because I don’t have to use the same word over and over. But I’ll admit to being a bit slow when I… Ahhh… do this that I do. I never learned to type. Or use this board thingy… What’s this called? It’s really sensitive. Anyway, so because of that, I make mistakes and have to correct them a lot. But I’m still really good with words!
    How was that paragraph to read? Easy? Did you understand my meaning? Or did you find it frustrating with the spaces and blanks? Well. That’s what it’s like for most of us to be able to get through a day of conversatin’ with others when we have “Brain Fog” or the more clinical term “Cognitive involvement”. Most autoimmune diseases cause it. It can be from the disease itself, such as Fibro-fog, or from one of the many medications we take such as Lyrica. Lyrica is notorious for causing Brain Fog. I used to be on it so I know it well.
    But I’m not on Lyrica anymore and it still happens. And it’s annoying. It happens Even when I write. And I have to sit and wait to figure out the word I want. Not just the right word for my sentence but the word itself. Like the other day when I wanted one of my kids to vacuum the living room and I couldn’t remember the word ‘vacuum’. I was staring right at the vacuum cleaner pointing! Of course, they gave me no help what so ever. And I understand the whole idea of this happening as we age. And yes, I am turning (UGH!) 50 in April. But this isn’t age. Age is when you can’t remember who played the villainess in the James Bond movie ‘Notorious’. (It was Grace Jones) This is forgetting the word ‘plate’ or ‘toilet paper’ or ‘pen’. When these objects are right in front of our faces. And it makes us feel stupid.
    You see, I feel like there are fuzzy, little monsters hopping around in my brain instead of sharp, electrical bolts of energy streaming from place to place connecting words, thoughts and sentences. Not that little, Fussy monsters aren’t endlessly fun and adorable. They are known as Galarples and are the cutest creatures on the planet! (for proof and the chance to own your own fuzzy, little monster, Visit www.etsy.com/shop/Galarples) But Fuzzy cuteness doesn’t help us find the words we need when we need them. And not finding our words gets frustrating. (But watching the little fuzzies hopping around in my brain is pretty enjoyable… Am I off topic here?)
    And what’s worse, not finding our words makes others believe we are inept and forgetful. And we are certainly NOT inept though we may be forgetful. But that is not all the time. and we still deserve a chance. Like My 83 year old mother insists I am the forgetful one in our relationship. it really angers me because although I am forgetful; she is as well. I May be closer to her level of forgetfulness than I want to admit, but I am not there yet. Especially now that my medication load is much less. And I truly understand that she may not want to admit her own forgetfulness and Brain Fog as she ages. It can be scary and may be very frustrating to her. It is to me. But it still doesn’t mean I get to carry all the blame. We just BOTH have fuzzy, little Galarple monsters in our heads! And that I can accept.
    So next time you are out with your autoimmune friend and the bouts of Brain Fog set in, ask them how many fuzzies have shown up today. You can laugh it off with each other and move on. And then all of us with this issue don’t have to be embarrassed anymore.
We can blame the GALARPLES!

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Sunday, November 8, 2015



Let Me Explain Something...

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    Have you ever played Jenga? You know, that game where the wooden blocks are all in a neat tower? But each player has to take one out and put it on top. It’s all about balance. And control. As the base of the tower gets more and more pulled apart, the top gets higher and higher. Eventually, the whole thing crashes. Which is the real fun of the game truthfully.
    But when things crash in real life, it’s not quite so fun. Having an autoimmune disease is a lot like playing Jenga. Only we are the tower. Our immune systems are always on the attack. They go after blocks of muscles or joints and push them out of balance, or they pull at blocks of nerves creating raggedy areas that can send tremors through our whole structure. They can even dislodge big blocks of energy that we can’t get back because the top of the tower is out of reach. And always getting higher.
    You see, a healthy immune system knows what is foreign and what is not. You catch a cold, it sees a virus, it attacks. End of story. With us, it’s not so easy. Our immune systems are confused. (Honestly, I say they are f***ng stupid, but I don’t know who will be reading this, so we are going with confused.) Our immune systems see a virus, they attack. They feel good about themselves. They see a deadly bacterium, they attack. They receive medal of honor, develop a god complex, and recruit vast hordes of loyal followers. They see a ligament or a muscle fiber and launch corporeal warfare.
    You think I am joking? I am not. You say “But I know people with….” and what? It’s not that bad? They don’t look sick? It’s just dry eyes and mouth? Back to Jenga for a minute. When you first start playing, does the tower look like it’s under attacK? Does it look like it is in imminent danger of collapse? Of course not. But it is. It’s exactly the same with us. Why do you think they are called invisible illnesses? The attack is all happening on the inside. Through the blood to whatever the target of the day is. And since most of us are women (I don’t get it either), we are great at makeup. And we use it! Even some of the men have learned the fine art of cover stick for those nasty under eye circles. (SORRY! I outed you all…) But just because our diseases work quietly on the inside, and just because the effects of our diseases aren’t ravagingly noticeable, doesn’t mean we are not sick. And very sick at that.
    Remember the tower? Imminent collapse? just like taking turns playing a game, the attacks on our bodies happen in waves. They just happen over months or years so the effects aren’t always immediately noticeable. And just like in any war, troops take rest periods. So do our diseases. They hide on us. (As if we don’t have enough to deal with, there are mind games involved.) When I lived in Buffalo, I used to play paintball in an old broken down warehouse. I was the one everyone hated. Too tall to be truly great at the athletic running part of the game, but deceptively good at folding myself up into tiny hiding spots. In other words, I camped. And occasionally became the last one left to capture the flag for my team! But I camped. And camping-in the world of war games and autoimmune diseases-is not a good thing. Campers will always come back to bite you in the a**!
    Which is exactly what autoimmune diseases do to us. They reawaken, reanimate, respawn, or simply reach 100 and say “Ready or not, here I come!” Again. And we’re never ready. How could we be? We never know what’s coming. What will be attacked next. Which is the final issue with having an autoimmune disease-ANY AUTOIMMUNE DISEASE-they attack a lot more than you think. Seriously. It’s a war and the immune system is programmed to attack. And without a cure, the attacks just get worse and worse and worse. Each disease may have its main objective: RA is connective tissue, Sjogren’s is moisture producing tissue, and Myositis is muscle tissue; but if you truly think about it-everything is connected to everything else in our bodies, so where’s the borderline?
    Connective tissue is everywhere, even in our lungs and our eyes. And speaking of eyes, the irises are made up of tiny muscles. And Sjogren’s-the “dry eye, dry mouth, it can’t be that bad thing”? Think about this for a minute: Every single system in our body uses moisture. Every Single One To Do Every Single Thing. Sjogren’s is not a disease that attacks the eyes and mouth. It attacks moisture producing centers of the body. Everywhere. Head to toe, root to tip.
    That’s the thing. Autoimmune diseases don’t attack body parts. They attack systems. They attack bodies. Our bodies. The bodies of people you know and love. They may pick and choose what to attack first in each person just like you choose which brick to pull out when it’s your turn in Jenga. But eventually, the attack spreads and the tower falls. It’s no joke and it’s no lie. And it will happen. Over and over. In Jenga you scoop it up, rebuild and start over. In life, we do what we need to. We take medicine, take a sick day, take to our beds… For me, it means going back to the doctor again. My tower is not so stable right now and I don’t know why.

But what it doesn’t mean is falling to pieces while someone yells “JENGA!”

Sunday, November 1, 2015




Speak Softly…. And Carry A Big Stick!

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    I have a cane. Four in fact. But my favourite is a custom made Diamond Willow wood cane with a brass pommel and a removable tip that reveals a spike tip for winter. Or for hiking. Who am I kidding? What are the chances that I’m going hiking any time well, ever? I had it made because I am vain. I admit  it. I am very tall and the only canes that are fit me are the ugly metal ones. I do not want to look disabled. I want to look young. And cool. So when my balance became an issue, I found a guy online, and ordered a cane the right size for me that didn’t look institutional. I fed my vanity.
    It’s four years later now and I still love that cane. I use it a lot too. But I should use it more. And that’s the issue. Remember the above referenced vanity? The experts call it denial though. Why? Because I know my condition but don’t always want to admit it or cater to it. I want to stay in Neverland where my condition, like Peter Pan, stays in a state of never moving forward and where Tinker Bell flies around with magic fairy dust that eliminates pain rather than doing whatever it actually does. (Am I the only one who thinks she’s tossing around some sort of psychedelic?)
    But Neverland doesn’t actually exist. We want it to. But it doesn’t. So we who are chronically ill must face choices. And mine is to carry a Big Stick. And face stares and whispers. Like the people you have read about who accuse those who park in the handicapped spaces of not actually being handicapped. Because I look healthy, as do most chronically ill. But walking is slowly becoming my nemesis. And I am loathe to admit I need help.
    You see, I am that person who stumbles into a wall or who suddenly freezes mid step arms stretched out hoping to catch my balance. I am the person who, in short, always looks tipsy-no pun intended. In my defence, dust bunnies are much more aggressive than one might think! As a child, Mom put me in ballet due to my klutziness. But my klutziness never went away. I am just very, very graceful when I lose my balance now! And I have some darned good moves that have prevented me from falling. But I’m not as good as I was. So there is my cane. My Big Stick.
    I walk without my cane when I can, but I have to admit to myself that I need to carry it. My disease will take my balance. Or my strength. Or it will crunch a nerve unprovoked and my ability to walk unassisted will suddenly be gone. And I can’t depend upon family to always be there for me. Not that my family wouldn’t let me lean on them. My boys call themselves my ‘human canes’. It’s that I can’t guarantee my family will be there when this happens. And trust me, strangers are not too keen on that sort of thing.  Just ask the poor 14 year old I grabbed in Vegas earlier this year when I lost my balance getting off the new observation wheel.
    So I am back where we started. I own a cane. It’s a nice one but I don’t like using it, I have to use it. Just not all the time. But because my disease is unpredictable and in my opinion rather mean, I have to carry it all the time. I know people stare. And I know people probably judge me as carrying it as a prop for parking. Guess what? I don’t really care anymore. I know what I need and when I need it. I don’t need to explain myself to anyone. And I carry a darned Big Stick!



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