Tuesday, December 15, 2015



A Word To The Wise…

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    OK. So this really happened. And I want you all to take note. Not that what I usually write isn’t true. It all is. (Even the embarrassing stuff.) I admit it, I put my entire life out there all for you so Sjogren’s can be better understood. And so that you as a reader can maybe find one hint that helps reduce your pain. To me, that would be absolutely awesome! But today, I want ALL of you to read what I say and I want ALL of you to DO WHAT I SAY.
    Why? Because I hurt right now. A LOT. Why do I hurt? I want to make up a fancy medical term for it like Clavicular Myositis or Interstitial Ribosis. (Neither exists by the way.) Put simply, I hurt because I was stupid. I was feeling strong and I moved a very small desk upstairs. I overdid it.
    And now I am paying for it. Big time! Here’s the thing though. We all over do it. Because we all have those days when we feel normal. When we have no pain. We wake up and jump out of bed and are halfway to the kitchen before we even realize it. And when we do, it’s like we freeze in place with the realization because we don’t want to jinx it. Or we are about to break into the MC Hammer dance. (You know: STOP! Hammertime! Oh Oh Oh Oh Oh Oh Oh!) But that’s when the trouble starts. We start thinking.
    And thinking is something we should never do. Especially on a good day. Because we start thinking of all the things we can do today. And why not? We feel good. We are not in pain. It’s our Golden Ticket Day. And our houses are total wrecks. (Funny how we will live with it until that day when we feel good.) We start to think and then...We make a list.
    Now we’ve done it. Because lists are dangerous. When we make lists, it becomes all too important for us to finish them. Normal people can finish their lists the next day. But we cannot. We cannot guarantee we will feel well enough to do the work the next day, but more than that, to not finish a list-to us-is to fail. Especially on a good day. And so much has been taken away from us already that we fight feeling like a failure each and every day as it is.
    So on our rare day of feeling good, the first two things we do-think and make a list- set us up for failure from the start. Why? Because we want to be productive. And that’s not such a bad thing. If we do it in the right way. Which brings me back to my story about the desk. It needed to be moved. In the past, I was capable of moving it alone. I just can’t do it anymore. And I should have been able to admit that to myself.
    You see, having a chronic, degenerative illness is all about acceptance. Acceptance of the illness, acceptance of its effects on the body, acceptance of the pain. But the hardest thing to accept is the fact that it is always changing us. Day by day, year by year, it takes more of our abilities away. Whether it’s the ability to open a jar or the ability to walk, these diseases slowly weaken us and we have to accept it. We just do not want to.
    And that is what led me to the place I am in today. A place of pain and humility. Yes, I got that desk into the living room. But I have yet to use it because I injured myself doing so. I have had to rest and lay down since December 6th. (Today is the 16th.) All because I did not want to accept my new level of abilities or admit my limitations. I was feeling great that day. But I acted as if I was the same person I was before I got sick. And I am not.
   None of us are. So do what you will with the tips and advice in my other posts. Read my blogs or not. (Hopefully you do and you laugh.) But please, do this one thing: set your goals appropriately and then lower them. Do NOT injure yourself trying to get done what didn’t get done when you were hurting anyway. Better yet-take yourself to a movie. No one ever overdid it and injured their entire upper back watching Magic Mike XXL! (That I know of…)

    

Monday, December 7, 2015



A Letter Of Thanks To Julie 22 Years Later

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   To this day, I remember your face, though I only remember your first name. Julie. We were not close. Not close at all. Work acquaintances really. I had only been there a few months when I got pregnant. And got sick. It was simultaneous. But no one knew how bad it would get. Or what it would lead to; the reason that I have not forgotten you almost exactly 22 years later.
    I was an evening scheduler for Home Health Aides when I got pregnant for the first time. I scheduled the West Side and you scheduled the East. It was not an easy job. We couldn’t leave until all our open clients had an aide scheduled for that time slot. And that included openings that occurred while we were working, not just the list we were handed when we came on.
    I took this job because I had just gotten over surgery to reconstruct my ankle. An injury from my previous job. A job I had to leave due to it’s dangerous nature and the fact that the management wanted to put me back in the same situation upon my return. So I didn’t trust anyone. I didn’t open up easily. And when I got pregnant, I assumed it would be looked at as a bad thing. But then I got sick.
    The doctors called it ‘Hyperemesis’. To me, it was such extreme morning sickness that nothing I ate stayed down. If I could eat at all. I didn’t gain weight either. After two weeks of this, I was removed from work and put on bed rest for a week or two at a time. After only 5 months on the job I was on medical leave and I was convinced no one really cared. Not just because no one really knew me but because the supervisor didn’t believe my condition was real. (The fact that she herself later developed the same condition and apologized for her treatment of me was hollow at best.)
   After 18 weeks of hyperemesis, and several hospital visits, I was finally able to eat (enchiladas-??) and gained a bit of pregnancy weight. I even experienced the joy of being pregnant. At 20 weeks, I felt movement! (We skipped church that day!) I made an appointment to get clearance to return to work. But I never returned to that job. I blacked out on the way to that appointment and ran off the road. My blood pressure was high. I was never given clearance to return.
    At 26 weeks, I gained 27 pounds all at once. I knew it was bad. I was diagnosed with ‘Preeclampsia’ and hospitalized. Preeclampsia is Pregnancy Induced Hypertension (PIH) or Toxemia, and it is very dangerous. I lasted only 2 ½ more weeks before having an emergency C-Section. My first child, a son, was born extremely prematurely and weighing only 2 pound 2 ounces. Casey was born on December 28th at 12:31am. My leprechaun had become a Christmas Angel. And I was afraid.
    I was also alone. Of course I had family that came to visit. But friends didn’t. Not right away. After all, what do you say to someone who just had the smallest baby they had ever seen and who didn’t yet have an above average chance for survival? My son wasn’t dead, but there was no guarantee he would live. And if he did, there was a high probability he would be disabled. No one knew how to handle that so they stayed away. Except for you.
    You showed up with a bag full of baby items. Tiny wrap onesies, blankets. matching hats and booties. These weren’t from the office either. They were from you. You acknowledged my son and his size. And you treated me like any other new mom. You gave no thought to the fact that we didn’t truly know each other. And for that, I am ever thankful. You turned an awkward and lonely situation into the joyous situation that it should have been from the start.
    Now, 22 years later, I want to tell you “Thank You”, Julie. I may not ever remember your last name, but I remember you. And I remember that day. And I want to tell you that Casey is doing just fine. In my estimation, he is perfectly normal contrary to all predictions. He is a carpenter now. He loves baseball and hockey and has a steady girlfriend. He is 6’0” and 190 lbs. But every now and then, I still see the little 2 lb 2 oz baby boy trying to push off the sides of his isolette in the pale blue hat and booties you gave him.
    I want you to know that I still have one of those outfits in my son’s memory box. And that what may have been a small thing to you still brings tears to my eyes and will never be forgotten by me. You made my son’s birth normal. And I love you for that.

Friday, December 4, 2015



You Are Worth It!!

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   It’s happening again. And I won’t let it go. It’s not in my nature. Last time it was family that didn’t understand. Now it is friends that can’t find the strength to carry on. And I get that we can’t do it for them or make the decisions for them or live their lives for them. But not to speak up, to me, is criminal. Especially when more of us have been where they are now than they can ever know because we just won’t be open about it. No one really talks about suicide, thoughts of, attempted, or successful.
    You see, in our world-a world of constant pain-suicide rates are high due to the pain. Much of our pain is denied by the outside world. Here’s why: When it comes to pain, the definition is subjective. I had my ankle reconstructed around 24 years ago. Before I had kids. And I had natural childbirth by accident. My reconstructive surgery sill stands out as the worst pain I was ever in. It’s bone pain. Like my broken back. To me, bone pain outweighs everything else in terms of level of pain. Ever.
    But debilitating pain? That remains in the head. I mean migraine pain. Or the type of neuropathic pain that ends up in the head and face and eyes. I can’t move when this happens. No light, no sound, no smells, and no food. I am a slug. And there is so little relief on the market. But the point that I am trying to make is that these pains are on MY personal scale of horrible. Not everyone’s. Other’s may sail through bone pain and have an easy go to for migraines or neuralgia. When you don’t, living with it day to day can be the very literal definition of HELL.
    And I have been there. And that is where this gets real. Because I do not know how to joke about this. There are no House Gnomes to blame and my Furbabies help a lot but there are days when even they can’t lick all the tears away. And on those days, when my family has reached their limit of understanding or that inevitable brick wall of helpfulness, I have turned to the darker thoughts. I think we all have. It’s normal. We need to admit that.
    What more of us may need to admit and talk about is the fact that I went farther. Yeah. I did. And no one knows. You see, years ago, I was into medieval reenactment in college. I don’t do it anymore, but i had a ball! I even went to “war”. I was an accomplished fencer in the round. And I still own my two daggers from that time. I keep them by my bed as I don’t believe in guns. Daggers by the bed and a chronic disease that causes pain and depression. Not a good combo. And yes they are sharp. Just not razor blade sharp.
    Anyway, after a particularly bad trip to the ED and argument with family about how my disease had progressed and money. Money always enters these arguments-another discussion though. I was distraught and truly felt worthless. The thoughts of everyone being better off without me around took over. And let’s be honest. How many of us with chronic illnesses have these exact thoughts? Seriously now? I am just words on a paper to you so admit it to yourself. Let it out and throw it away. Throw it far away because you are so worth the moon and the sun and all the stars in the sky to everyone in your life!
    I tried to cut myself that day. There. I said it. You know. All of you. But I was too afraid. And I kept seeing my kids. My beautiful awesome boys whom I felt I was burdening with my illness and the fact that I was constantly sick. The ones who love me anyway but don’t know how to show it other than getting upset at me and telling me not to do stuff or asking me why I try. They are not poets. But they care and killing myself would have changed their lives. Changed their entire path on this earth. And I love who they are now. There are also others who would have been left wondering what they did wrong. And that is not fair.
    Yes, We are the warriors of pain that no one else knows. We are the small voices of the world that endure the unendurable. That cannot be heard. Because to hear us is to acknowledge us and maybe that is a pain our loved ones can’t handle. But we go through this for a reason. So if anyone else in our lives ends up going through it, they can count on us!
    I never tried again. I can’t say I haven’t returned to that dark place of thoughts. But it doesn’t affect me in the same way anymore. Now, I am much more able to refocus on at least one blessing in my life. And I want anyone out there reading this to do the same. And if you cannot find a blessing in your life at the moment, please-do NOT take action. PM me instead. I will listen. I care. I will take your dagger and hold your hand so you can get through the night.

You Are Worth It!!

Thursday, December 3, 2015



It’s Foggy In Here

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    So on Sunday, my husband and I went over bills and phone calls and general household stuff that had to get done. I made my to do list as usual so I’d remember what I had to do on Monday. I put it away, played Candy Crush, drank my water and went to bed with the fan on as usual. At that exact moment, my house gnomes woke up and decided they needed the paper my list was on much more than I did and relieved me of it as I found out the next morning.
    Monday morning and no list. My memory is not the best. But this should be OK. I had 4 phone calls and not many errands. So phone calls first. 1) The Bank-that’s easy! I called the bank and got instructions on how to close one account in order to open it in a different profile. Or maybe not. We want to open the account profile in my husband’s name. Apparently that means I can’t be given instructions. Seriously. Bang head on wall. Now need another errand. (Banks should handle HIPAA by the way. And the ability to purchase weaponry. But that’s a totally different paper…)
    OK. One call down. 2) Next... Next… Wait. What was the next call? Ummm, the boys? The house? Doctor...YES! I have to find out when my next appointment is! Done! Friday at 10AM.
3) Call…..      ………..        ………..        ………… (does this happen to any of you?) Seriously. Just yesterday, I conversed with my husband and made a short list of stuff to do and now after only two phone calls, it has completely jumped out of my head. Unbelievable. Oh yeah! Insurance Agent! YESS!! So number 4 is… I give up! Done. I’ll figure it out later.
    So on phone calls, I’m ¾. Not bad for someone who openly admits to a bad memory though I am not sure it’s from the autoimmune stuff or the medicine. And unfortunately, either makes daily life difficult. Not that I forget everything. I don’t. But there are days when I forget a lot. From getting dog food to making the one phone call necessary to pay our electrical bill. The worst is forgetting appointments or meetings with friends. I have lost a lot of friends because I have not met up with them due to forgetfulness or plain disease effects. I hate that about myself.
    Now for errands. I need to pick up bread. That I know. I run out to Lori’s, get the bread, in and out. Now for, ummm, OH! Bras! They were sent to Greece Lane Bryant. Up north. No problem. Only 25 miles away. So I drive up there, park, walk to that store, make the exchange after trying on way too many due to weight loss, and walk/drag back to the car. I’m already exhausted and thirsty. I travel with water. I chug. What’s next? I have absolutely no clue! Hahahaha. So typical. The more I push myself, the more tired I get, the more I forget.
    This is why I make lists. Like the one the Gnomes took. And I also lose these lists all the time. So I just purchased a purse journal. A small one to write my lists in and put right back into my purse. Hopefully house Gnomes hate the inside of purses. And that I will remember to write down appointments on it as well. I got a pretty one. If I have to use one, I want it to be pretty! Like my cane-if I have to use it, I want it to be cool.
    So back to my errands. What’s next. Ahhhhh……….. ALDI! Yup. Fruit! That’s 3/I have no clue for errands! Wait a minute. ALDI is way back by Lori’s. I should have that right after getting my bread. That’s why lists are helpful. They organize where my errands are too. I am wasting gas because I am driving back and forth and back and forth. I am so over this bad memory thing. Now I’m just going to stop at Starbuck’s and get some really strong coffee with caramel. I want caffeine. And sugar. And maybe this will trigger my memory. Maybe…

    Or maybe I will be fast enough to catch those damn little Gnomes before they get away with my next list!
    

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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