Wednesday, July 29, 2015

Pins and Needles

    Today was not a stellar day in dealing with my disease. I had to go to my neurologist to get help for a major headache. And I am home now feeling the effects of that visit and that treatment. It’s not that I have never had such a treatment before, or dealt with the aftermath. I mean, an Autoimmune diagnosis is akin to signing up for the human testing phase of several different treatments and drug trials at the same time. Sure, there’s relief from symptoms, but there are also side effects
    Many side effects are ones that everyone has heard of: fatigue, nausea, weight gain, headaches. Normal everyday stuff right? But those of us with Autoimmune diseases don’t take ‘normal’ medications. We don’t get ‘normal’ treatments. We are the recipients of prescription medications that have side effects that could be listed on a new Saturday Night Live skit. OK, I have yet to read “Robert De Niro face” on an insert, but some lists have come awfully close to stating “droopy lip”! Here are some actual side effects from my own medications:
    Med 1) joint or muscle pain, change in walking and balance, clumsiness, confusion, delusions, dementia, difficulty with speaking, double vision, blistering, peeling, or loosening of the skin, chills, burning, tingling, numbness or pain in the hands, arms, feet, or legs, diarrhea, difficulty having a bowel movement, red skin lesions, often with a purple center.
    Med 2) unusual tiredness, weakness, discomfort in the chest, upper stomach, or throat, excess air or gas in the stomach or intestines, passing gas, pale or blue lips, fingernails, or skin, ringing or buzzing in ears or any loss of hearing, unusual bleeding or bruising, muscle twitching, bleaching of hair or increased hair loss, irritability, loss of consciousness, mood or other mental changes.
    Wait a minute. I have Sjogren’s. Which can act a lot like Arthritis. So “Joint or Muscle pain”? “Numbness”? “Twitching”? “Weakness”? Aren’t these medications supposed to help STOP these symptoms? And “Clumsiness”? “excess GAS”?! “PASSING GAS”?! Ummmm…. Yeah, that’s what I’ve always wanted; to be able to belch and fart like a true champion. Well, at least now I fit in with the rest of my gaseous male family members. I’ve even won a burping contest!
    Keep looking though. There’s diarrhea AND constipation? Pale or blue lips AND unusual bruising AND red and purple skin lesions? Chills AND burning tingling skin? This is a symptomatic roller coaster and I really want to get off. But that’s the problem. I can’t get off. We can’t get off. We have to keep trying to mix these meds and these side effects into the perfect combination so we can have a life with minimal pain. And I for one failed Chemistry.
    So how do we do it?  Manage our pain, our diseases, side effects, and have a life? I honestly can’t tell you. But I can share this: I am sitting here with a completely numb head. NUMB! I get muscular headaches across the entire surface of my head. The muscles randomly swell up and cause severe painful knots. If I can’t get rid of these headaches on my own, I get a nerve block when I can’t stand the pain anymore. Sounds fairly simple huh? It consists of roughly 24 shots all over my head and face into the muscles along the major nerves that run up the back of both sides of the head, over the top, and branches down the sides and front. This numbs the nerves and allows the muscles to relax. It also makes my scalp numb for awhile! And my tongue. And the insides of my ears. Which now itch like they’ve been in a cast for 8 weeks! But my headache is going away and I will be able to do stuff again. Like read. Or drive. Or lay on a pillow to sleep.

    Oh yeah! And to type up these things!

Sharilynn Battaglia

Saturday, July 25, 2015

  Parts is Parts

    Today I went with my mother to the hospital so she could have an ultrasound on her leg. It was humid out but very cold in the hospital. I waited in the family room while she went back and decided to check my phone, read, and what not. There was a kid’s show on the TV and they were singing about the human body, all its parts, and what they all are for. That’s when it hit me. My parts don’t all do what they are supposed to. They are rebellious. I realized that I feel less like a body and more like a collection parts.
    Don’t get me wrong, I like my body. I have (almost) all my parts. And they usually work very well together. But little by little, my disease has taken over some parts of my body that I’d rather have back. Along with my Sjogren’s, I have MCTD which stands for Mixed Connective Tissue Disease - or as I call it, Alphabet Soup. This is the pleasant blending of Lupus, RA, Myositis, and Scleroderma into one disease. Any symptom of any included disease, any combo of included diseases, or all included diseases can pop out on any given day. I struggle with all but the Scleroderma aspects. Mainly, I struggle with the myositis aspect which attacks the muscle fibers causing them to swell up.
    So today I am sitting here, at 11:00am already battling a headache. Yes, the weather is being it’s roller coaster self again here in Rochester, but I have truly lost control of my head. This is not a migraine by the way. Those are easy compared to this. This is when all of the muscles on my skull from the base in back all the way around, up, and over to my eye sockets are just painful. Achingly, stabbingly painful. I can’t lay down to rest, because if I lay on them, they hurt. I can massage them and it goes away. I can heat them and it goes away. But not for long. Meds don’t even work. I recently bought an iron skillet but I think that’s another article.
    I’m also trying to figure out what happened to my legs. OK, just one. My right leg. It decides when it actually wants to work right now. I think its out to get me, but apparently the term “sudden bouts of muscle weakness” applies here so it’s another effect of being sick. This is my myositis symptomology coming out again. Swollen muscle fibers are not strong muscle fibers. So my right leg works against me. A lot. It brings to mind a saying about wrangling cats… And with my attacks being one sided, I have balance issues as well and I fall into walls. Oh well. I’m tall so no one sees the face-prints!
    But even with headaches and legs with different agendas, the body part I miss the most are my fingers. Sjogren’s causes acute wrist pain and RA causes my hands to be next to useless at times, but my fingers now have a mind of their own. I cannot type well, not that I ever really learned. But typing on any keyboard that is sensitive when your fingers tremor is a crapshoot at best. I mistype letters and I double tap like you wouldn’t believe. Just ask my Migraine group - I have become known for my misuse or double use of emojis! And then there is reading. I am a book girl. I always will be. But a video of me trying to turn a page would be worth sending to America’s Funniest Home Videos. It can seriously take me minutes just to turn a page due to the shaking!
    So if any of you ever meet me on the street, know this: If I do not have a headache, I am a hoot to ask directions from! If I try to show you, you may get to see a wall plant. If I try to point it out, you’ll get to see my impression of an over caffeinated inchworm. Either way, It’s amusing. Just not for me when I am in the middle of trying to be serious about life.
    But then again, what’s the fun in that?

Sharilynn Battaglia

Monday, July 20, 2015

That’s Life

    We all know the phrase “That’s Life”! It means that things happen. Good things, bad things, thingy things. But rarely predictable things. Of course being a parent I know this. Having an Autoimmune disease just gives me more practice experiencing this idea. So when both come into play at the same time, it is enough to render me catatonic.
    This is what has happened to me over the past two weeks. For starters, my husband and I have allowed a 20 yr old friend of my oldest son to move in with us. His parents divorced and have gone on their merry way. They are now selling the house they left him alone in to live. With no car, no job, and no guidance. OK. He can live with us. Little did we know that that would mean “party house” to everyone else! Now that three of five guys that hang out together live in one place, it made sense-to them- for the others to come here! Yeah-NO-that ended quickly.
    Thinking the drama over with life calming down a bit, cleaning even started. Yes-three young men willfully cleaned stuff! I should have been prepared for shoe number two. But I wasn’t. I decided to help them clean. Apparently closet shelves are no longer for sweaters but are for bottles and cans of alcoholic beverages that I have never heard of. Cotton Candy Coolers? I must say, finding a bar in my kid’s room-though he’s 21-doesn’t sit well with me. I don’t remember the “mom, I want to become a bartender and will have the supplies to practice with in my room so I can nail the test” conversation. Or any conversation. And the fact that our new houseguest, our other son, and most of the friends that come over are under 21 didn’t seem to phase the newest decision maker in the family. The fact that I was hit in my teens by a drunk driver which caused far reaching complications; as well as the birth of Larry, my gecko tattoo that covers an angry purple surgical scar; also didn’t seem to be considered and I hit a level somewhat beyond ballistic mom status.
    And that was not yet the end. Remember, this is the space of two weeks! We were destined to learn about VAPING as well. First and foremost: if you dare call it smoking by mistake, you get promptly get schooled. “IT’S NOT SMOKING;IT‘S VAPING”. They are totally different apparently. But let’s see… You suck crap into your lungs, hold it there, and blow out smelly, lingering clouds of crap into the air. In a car, the vapor leaves residue on the windshields that has to be cleaned of and both contain nicotine and other unpronounceables. Oh wait! Cigarettes contain tar and ash! Whew! For a minute there I thought they were equally dangerous… Uh-oh! Dad has now reached missile status himself.  Well, I’m not alone anymore!?...
    At this point,  I hurt worse than being trampled. Stress really affects diseases like ours, Autoimmune diseases. You see, the immune system will send out antibodies and cortisol in response to stress. The body is getting ready for a fight. It’s an old reaction that saved our lives many times over the course of history by having extra disease fighters and healers as well as extra energy at the ready. Now however, it’s just making me swollen and stiff and wanting to roll up in blankets while I scream. It’s making it hard to be a parent. And I need to be a parent. NOW. I am hurting yet I need to be a parent yet I am hurting.
    More surprises popped up out of my son’s rooms as if they were the embodiment of the old snakes in a can gag. Not all legal. Not all handled well by me. I remember throwing some things. And being rather pleased at myself that my old pitching abilities seemed to have returned. Until I couldn’t even lift my arm the next day. Or even think. At 19 and 21, they have some freedom to make decisions over how they live their lives, but they also live under my roof which means there are still rules. Parenting young adult man-children is the hardest thing I have done while sick. They have very well formed opinions. But it is still my house and my rules. So now there is Momma Mandated Cleaning. And family meetings about “THE RULES”. And order and control (ha-ha snort) will be restored, if slowly. And I will always, always wonder:

                           “......If Only I Hadn’t Been Sick, Maybe…..”

Sharilynn Battaglia

Sunday, July 12, 2015


Going Mental

     I wasn’t going to write today. After all, too much of a good thing, even if really good, is still too much.  But, no aspects of this journey are off limits right now. So here is where it’s at, to closely quote an Alley Cat.
    I am having a mental crisis today. These are part of the equation too. As much as those of us who live with a chronic disease want to live side by side with our diseases gracefully, that is rarely the case. Hopefully though, we can break down at home, in private, or in our support groups whether web-based or physical meetings. (see sidebar for some helpful links to support groups) Best case scenario, we will have family and friends who are understanding and supportive as well. But the truth is this, many of us don’t have that. Many of us have friends and even family who don’t support us and don’t understand because they cannot physically see what we go through.
    I’ll be the first to admit that I have it pretty good. My husband and my children are willing to pick up the slack when I am sick and really don’t like it when I attempt to do difficult things. But even they can’t keep it up all the time. They tire quickly when I can’t manage the stairs or am in so much pain that I’m ‘down’ for the day. They will accept that I need them to get me things, but want to do it on their terms. And they can be forgetful.
    So I try not to need them. I try not to be sick. In fact, I have been trying to find ways to be able to go off my meds and manage my disease naturally. First because I truly believe that that will be more healthy overall and second, well, maybe if I don’t need the meds, then I’m not really sick. Then I can have my dream. I can be normal and not worry about the studies and the side effects. And I can finally stop hurting.
    In order to do that I have talked to my doctors. But most of my meds are not relinquishable. Or so they tell me. I do know how to reduce meds safely. In most cases, I’ve been through it in the past. I have tried to reduce or go off meds before. I wasn’t as passionate about healthy eating and natural remedies then. I just wanted to see what I didn’t need. But I learned how to go about it and I have been applying that knowledge lately. And It was working. Or so I thought. Until the pain came back. I decided i would live with it for awhile. I’d rather have pain and have a healthier body or deal with it for a bit and get used to it right?
     Guess again. It got worse. And I started to do nothing during the day. Nothing. And I kept on hurting. So two days ago I went back up to the full doses of everything. I hope it works. I think. Hence the reason for my mental crisis. I don’t really want to be back on my meds again.
    Sounds crazy right? If my pain stops, take it! And I agree. But I also agree that the meds I am on are affecting my balance, my memory, my personality… My life in general. Therefore I shouldn’t take them! I am sooo frustrated at this very moment trying to figure out what I believe and what is best for me and my body. And I just can’t. I can’t figure it out, I can’t deal with the pain, I can’t put up with the side effects, and I can’t chuck everything in the toilet and flush! So I cry. That’s all I can do right now. Cry silent tears that don’t actually form or fall down my cheeks-I do have Sjogren’s after all.
    Hopefully, I will be able to sleep now. I have cried and I have written. Maybe my mind can settle down enough now to make relaxation possible. And things are easier to think about and solve during the day. So I will end now. Oh, and I mustn't forget to take my pills before I go to bed!

Sharilynn Battaglia

Saturday, July 11, 2015

Getting Warmer

    I live in Western New York State. Near Buffalo. We are in the “snow corridor” along I-90. This past February, we went 30 days straight without hitting temperatures above freezing. 30 days! Everywhere we went, things were frozen. Things that shouldn’t have been frozen. There was so much ice and snow that buildings collapsed. Even I started to freeze. And I thought I would never recover.
    You see, part of being Autoimmune, for me, is having absolutely no control over my body temperature. It’s actually called dysautonomia and it literally means my autonomic nervous system is broken. My body doesn’t always recognize when it needs to push a temperature change because my immune system has a mind of its own. So I will spike a sudden fever for no reason or be the oddball sitting in the sun at a ballgame with a jacket and a blanket wrapped around me or I will overreact to hot and cold because my body won’t turn on the systems to counteract them.
    This makes it hard to be out and about on any given day. Or at least be out and about in a normal way. With Sjogren’s, I cannot be in the sun. I get overheated and I rash out. So I need to have a “wrap” with me all the time. And I have many. In the beginning all I had was a large white cut of cotton-gauze. I wore it while driving to keep the sun off my arms and my chest. But wrapped up like that, I looked like a mummy driving around at the wrong time of year. I got stares. Really strange stares. And I started to look for alternatives to wrapping myself in gauze.  I found scarves that were big enough and sheer enough to allow the air to get to me and still keep the sun off. But my sensitivity now extends to my face so I wear my scarves over my head to protect myself. I still get stares. Hopefully, some of them could be staring at my gorgeous wrap!
    So I use scarves to keep myself from rashing and to keep myself cool. But when the internal thermometer crashes, it’s chaos. I can go shopping for the insane total of 10 minutes and will end up at the register sweating like I’ve run a marathon wondering if I look normal or if I am as red as my burning face feels. That will probably be the end of my day.
    I used to spend my summers watching my boys play baseball sitting with my wrap under an umbrella knowing that some thought I was overreacting to the “sunlight/cancer” research. My body would sweat but I never felt any cooler. Sometimes it was just too hot so I sat in the air conditioned car parked dangerously close to the ballfield but where I could see my kids through the windshield.
    I know what people think too. I am overweight. It will be assumed that my problem is that I am out of shape. That I am lazy and self indulgent. I am a heavy, sweaty, red-faced woman trying to catch my breath and chugging bottled water on a bench in Anymall USA. I will never be seen as ill. No one will see “sjogren’s” or “Fibromyalgia” or “Lupus” or any of the 300+ Autoimmune diseases that exist and are yet invisible.
    So back to This past February. With 30 days below freezing. In a body that doesn’t react like a normal human body. My favorite chair is set up by the front window so I can watch birds. But I also had three of my heavy furry blankets on it. And I had a fan on the table next to it. ‘Cuz ya’ know, it’s totally freezing outside and I’m sweating bullets. Again. Does my face look red to you?

Thursday, July 9, 2015


    So I have heard from a lot of people that they don’t know how to explain this to their families. That their family members see them as whiny, attention seeking, or just plain lazy.  I understand how that can happen. Autoimmune diseases are invisible. We don’t look sick. And most of us never will. We look exhausted-a lot! But not really sick.
    The thing is, pain is tiring. If you read about it, there is research that states going through a day of pain is like going through a day of mild exercise. Muscles contract to compensate for a painful area we may be babying, breathing is increased, and heart rate and BP are elevated. It’s hard work to exist in pain. But our face rarely changes throughout our pain. Unless we contort our face in some way, it looks normal. Our skin doesn’t change color in and our face itself rarely swells up when it is our muscles and joints that hurt. So we are like those old candies called ‘Gushers’. They looked like normal everyday starburst chews on the outside, but when you bit into them, boy did that liquid center come pouring out! We look fine on the outside too. We just don’t let our pain come pouring out. Usually.
    So what do our family members see? We sit on the couch at get togethers instead of offering to help because we are afraid to drop the plates of food or the piles of dishes after the meal because our hands are weak and they hurt? Or we sit at the table being quiet because talking takes too much energy. Or they assume we are the snobs because phone calls are difficult. Literally! Talking on the phone dries me out, hurts my wrist, and is mentally draining. But who on earth can understand that unless they feel the same way I do?
    And then there is the whole house cleaning issue. I can’t clean. I used to. I could get down on my knees and scrub the tubs and showers and only pay with swollen painful hands. Laundry wasn’t too bad even if folding caused sore wrists. I cooked a lot.  I was acting normal. I was doing the work but I was also napping a lot. Which was accepted by my family.
    But as things got worse, chores got harder for me to do and I abandoned them. It’s not easy getting others in a household to just pick up extra work that they are not used to doing. Asking my pre-teen kids to take on extra work seems like a no brainer, but it’s far from easy. They don’t understand why I need the help now when I didn’t before. And the asking is sporadic because the disease is inconsistent.
    So we live in a world of ‘why can’t you do it?’. And it becomes easier to just do it even though it completely ruins us. Vacuuming and dusting one room yesterday has created a situation where walking is a pipe dream today. But there is still so much to do. So I have learned to deal with a messy house. I have learned to accept complete embarrassment if people stop by. And I have had to accept that I must explain myself to everyone who comes in to my mess even though no one has the right to judge us for our abilities or lack there of.
    But family is still different. My husband hates a cluttered house. My youngest doesn’t like having his friends over when the house a mess. My own mother cannot accept that things just will not get done in my house even though I have a husband and two grown children. And it stresses her out completely. She sees this fact as proof my family does not take care of me. She could not be more wrong. My husband and my kids do what I need when I need it. It’s just that what I need is not a pristine house though that would be nice.
    My needs are more immediate. I need help walking. I need help getting up and down the stairs. I need my medicine and water when I am forgetful. I need muscles when I can clean the house. I need someone with me now when I cook. I need the caring of someone to say ‘don’t worry about that’ even if they don’t do it themselves right then.
    But most of all, I need one thing that I have yet to get: unconditional acceptance of my disease process on any given day. Whether I am a dynamo and can do everything I used to or whether I am a silent lump under my favorite furry blankets. That is what I need from my family. Maybe someday they will be able to read enough to truly understand the reality that is life inside my body. For now, I will continue to write.

Sharilynn Battaglia

Wednesday, July 8, 2015

Look Ma, No Hands

        I have been diagnosed as Autoimmune for nearly 20 years now. And I am used to it. I can even accept it on most days. I mean it’s not going away anytime soon so there’s no point in continuing to be upset by news I was given two decades ago. But that doesn’t change the fact that I don’t always like it.
    When I was first diagnosed, it was simply a label I was given. It was a pain in my wrists-literally. That was it. My life wasn’t really affected by my disease and I had no reason back then to think it would be. I had been lucky. I caught it early. And I was being given all the tools I needed to control it. Or so I thought.
    I was officially diagnosed four months after my second child was born. I was a stay at home mom so my schedule was my own. I played on the floor with my kids or sat outside with them as long as I was out of the sun. I took them for walks and to the park. And when I  got tired, I napped on the floor with them in the playroom. They were young yet, and active. And I was keeping up. For the most part.
    When they were both finally in school full time, I went back to work. Why wouldn’t I? I had just spent eight years at home raising active boy children with no real major problems. But in the real world, things were different. The simplest of actions to most people proved to be a huge problem for me. I could not get up out of my chair easily. Yup. Simply standing up to walk around. I didn’t have to do it all that much at home. We had a small house with an enclosed yard, porch, and playroom. But now I was up and down all the time.
    And walking wasn’t so easy either. I had always had a stroller to hang on to. I didn’t know how much my hips and knees were actually being affected. I didn’t know that this Sjogren’s was stealing my balance. At first it was the occasional mis-step sideways. Or the minor slip on ice or a wet floor that was totally recoverable. No big deal.
    But soon mis-steps became stumbles and slips became windmill like tilts. Still totally recoverable. I had taken 10 years of ballet after all. But more and more I was having these little incidents. And then the tripping started. I could trip over a dust bunny. And I couldn’t always recover. I fell. And I became afraid. Falling meant injuries and I got injured. A lot. I fell onto my knees so many times that I lost count. Finally, I cracked a knee cap when I fell down the stairs.
    Now, I am terrified of falling. I am terrified going down the stairs. My knees crackle like my morning cereal. And one of my knees is always swollen. Always. I don’t go out much without a cane now. At least I’m not supposed to. I am stubborn and still more than a little vain. When I said I have accepted my disease I was being truthful. I just don’t like looking like I have a disease. But which is worse-limping or using a cane; even if it is a totally cool custom made cane with autographs all over it?
    So at this point in my progression, my definition of a good day is one where I can get through the day without tripping, side stepping, crashing into a wall, or tilting as if I am being pushed over by a huge invisible cursor. A good day is a day with no cane and no falls. But a great day? A great day is all of the above with no pain. And maybe taking the dog for a walk around the block!
Sharilynn Battaglia

Tuesday, July 7, 2015

The Babies of the Fur

    I grew up with animals. I do not remember a time in my life when I didn’t have them around. Being alone most of the time, the companionship meant a lot to me. It wasn’t until later in my life that I figured out that the animals around me meant so much more than that.
    Those who know me know that I have a weakness for cats. Though nowhere near ‘Crazy Cat Lady’ level, if I could bring all the homeless kittens home, I would. But three is enough of a handful for now. They also fit very nicely together when I am not at my best. You see, cats know things. And mine know when I hurt.
    This realization started when I was pregnant with my first child and I was very sick. My cat at the time, Kira, used to sit on my belly. I mean she would push and poke and fight so she could cuddle near that tiny human being. When he came home from the hospital, Kira would regularly sleep next to or under his bassinet. She became his guardian continuing the job she took on when I was pregnant and sick and he was in trouble.
    Now, 21 years later, I am still sick and I am the one in trouble. A chronic pain sufferer, I am still the mama to three cats and one dog who thinks he is a 57 pound cat. Studies have proven that pets of any kind help reduce depression. The sound of a purring cat can reduce anxiety and promote sleep. Studies also show that pets that have fur and can be stroked can reduce pain levels in those of us that deal with pain on a daily basis.
    So here’s the thing those of you out there who do not experience chronic pain may not know. Pets tune in to our bodies. During these past six years, I have had some of the worst pain experiences and flare ups of my entire disease process. Each and every time, my cats came to cuddle me. Not with me, on me. Quite literally on the point where my body hurt. They surrounded my knee when I fractured my kneecap taking turns draping themselves on top of the brace. They have piled on my stomach, my chest and my head. They regularly sleep on my hips and my shoulders and when my hands hurt, they force their heads under them so I have no choice but to pet them. They become a fuzzy, purring  masseuse kneading areas of pain with their tiny paws. And in a the world where many of our human friends don’t know how to treat us or are afraid to touch us when we hurt, all this contact is priceless!
     But pets can do more than just seek out and surround areas of physical pain. My little cat, Marbles, is able to recognize my emotional needs; a trait usually attributed to dogs. She’s the one who will come running whenever I raise my voice. She puts her paws on my face and licks what tears I am able to cry when I am upset. She also defuses my anger by biting my head. She stays in my lap until I am settled. Marbles knows these mood swings are not good for me so she does what she can to end them.
    It’s no surprise that so many of us with chronic illnesses are also chronic animal lovers. Our condition gives us the ability to see into another side of the animal world. Where empathy and caring are center stage and where our beloved pets return our love and care when we need it most. Where it isn’t human to animal but one soul to another. And where we could learn much from a 7 pound fur-baby who hates to see her mama cry.


Monday, July 6, 2015

24 hours

    I used to think my diagnosis was an easy one. I was told so by my first Rheumatologist. She said if she had to pick a disease to have this would be it. I should have been offended then but I didn’t know any better. Now I do.
    I used to be able to get through my days easily. My worst symptoms were dizziness and thirst or fatigue. And wrist pain. My wrists always hurt. They still hurt. All the time. But that’s not as bad as it could be. I can still use my hands. For the most part. It’s the rest of it that gets me. The things that happen over and over during the course of a day. A single 24 hour period.
    It all starts when first waking up in the morning. That nice cuddly time when the world is warm and soft and I am still groggy. Then I forget who I am and I stretch. One of those full body stretches like you see in the movies except mine gets cut off in the first few seconds. The minute my body starts to straighten and twist. The sharp pain that shoots out of my hip stops me immediately and I contract back in on myself. At least I am still under the covers. Still warm.
    That’s where I stay for the next few minutes. Or hours. There’s no telling how long I will put off moving again. I prefer to draw the covers close and tuck them all around me. When I am warm I can pretend pain does not exist. But it still does. I am not in denial. And as I wake up more and more, every joint touching the mattress starts reacting to the pressure. That’s the drawback of some of these diseases, like Fibromyalgia-the disease so many still believe does not actually exist. It makes you hurt just to be touched. So hugs are not a good thing for me on these days. They offer no comfort. But bed does. As long as I don’t leave.
    But who can lay in bed all day? Well, who SHOULD lay in bed all day? So movement is a necessity. I roll onto my back and stretch slowly this time. I ‘listen’ to every joint as I do so. This lets me know what my day will be like. Thia and the weather but that’s another story. I sit up by pushing an elbow into the mattress because my muscles aren’t ready to do work yet. There are various noises that go along with this action but none really have a set spelling.
    So I am halfway there now! Yay! I take a break to find my glasses and love the kitties who are rather belligerent that they have yet to be fed. Standing takes more noises sans spellings and pushing on my knees. I stay bent over. I have learned two things: I can no longer stand straight up without the risking a blackout and I need to stand in stages to avoid hurting my back since breaking it a year ago.
    At this point, as I am standing, I know if my feet are an issue. But taking steps will tell me even more. Anyone who has had heel spurs or fasciitis knows that the first steps are the worst! I also check my knuckles at this point. It’s a semi-scientific check of how swollen I am. Another indicator of the type of day I will be having.
    Now I have completed my morning routine. It’s not the same morning routine as most people on the planet, that one comes later for me. But it is my morning routine and it is important and it is valid. All these checks and balances I do just to get out of bed and begin my day also happen all day long if I am to have any kind of productive day. I read my body for cues like most people read the paper for news or watch the sky for impending weather. I can react to these by taking medicine, resting, warming up, or eating and drinking so I can stay as healthy as possible while doing as much as I physically can.
    You see, It’s not that we may or may not have pain, it’s that we do have pain. Almost always. But we can learn how to react to it to be able to get through it. To live with it. To actually have a life, 24 hours at a time, in spite of it.
     I am having a good 24 hours today. How ‘bout you?

Sharilynn Battaglia


Two years ago, I went to a job interview for an agency that I knew I was a good fit for. I was prepared. I had all my paperwork, I had studied up on changes in the NYS regs in my field, I had dress clothes that fit. One thing I didn’t have was an understanding of what was coming.
    I walked in and was seated with three others. A triple interview-as if I wasn’t nervous enough. I had completed the questionnaire and “test” of my abilities to prioritize issues that arise in my field. All I had left was this, the group interview.
    The first questions were easy enough. Why was I in my field, what skills did I have that made me a better candidate than others. I was 47 at the time so my life experience gave me a good boost in that area. But then came questions I struggled with. What is my biggest weakness. If I could change one thing about myself, what would it be. And the kicker-in what areas of this position would you need the most support. I was not prepared to answer those questions. after all, what does a person with an invisible disability say to an agency that is in the business of assisting those with visible disabilities?
    You see, I am what you call “chronically ill”. I have  disease that is incurable but mild in comparison to diseases like cancer and heart disease. I am ‘autoimmune’. What I mean by that is that I have one of 300+ recognized autoimmune diseases such as Lupus, Rheumatoid Arthritis, and MS. But my disease is not one of the well known ones. I have Sjogren’s Syndrome.
    I’ll bet you all just said what is that and how do you pronounce it? First, it is SHOW-grins. Second, it is an autoimmune disorder where my body attacks itself. My antibodies attack the moisture producing centers in my own body. Most people think that means just dry eyes and dry mouth but it is much much more. And it does not affect the way I look. An invisible disease.
    So back to the interview. My biggest weakness is the fact that I am constantly tired. That seems to be a hallmark of every autoimmune disease out there. But the fatigue is such that you can’t move. You can’t think. You fall asleep in the middle of doing stuff. Literally! If I could change one thing about myself-I would get rid of this disease. What would I need support in? Everything. I have gone from being able to walk miles to barely being able to walk ½ mile on my good days, barely being able to walk on my bad. I have gone from being a fair typist to having tremors so bad I have to correct every other word. I have gone from being able to be up and around all day to not being able to sit for more than 20 min at a time. I am absent at least once per month. I have become unable to hold long conversations without water or be in the sun. How do I explain this? Or do I lie to increase my chances of getting the job and tell HR later?
    I have been doing what I do for over 30 years. I have taught kids how to walk. I have taught young adults job skills so they can earn a paycheck. I have taught academics, physical skills, and passed meds. I started a social group for teens and a toy delivery network. But I haven’t got the skills to play ball in this new job market. Where I offer loyalty, employers offer none. Where I give honesty, untruths are rewarded. And where I will do whatever is needed, others now say that’s not my job. So how do I sell myself in a job interview and retain my integrity and self respect?
    I haven’t found the answer yet. I should be able to present myself as I am with all my knowledge and experience as well as all my faults and flaws and still be regarded as a worthwhile candidate. But we live in the real world and the real economy and there are too many applicants for each single job opening. So where knowledge and experience used to get higher preference; age, weight, and sex can now be more of a determining factor than actual skill. Why would someone like me add medical disability to the list of things a potential employer can use against me? I don’t either.

By the way, wish me luck. I have a job interview next week.
Sharilynn Battaglia