Sunday, October 25, 2015


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I Am A Heavy Drinker

**As a special note, it is possible to drink too much water which can be deadly. Sjogren’s patients need to monitor water intake with their doctors as well as be aware of their urine output in relation to the amount of water they are drinking.**

      I’ll admit it. I drink. A lot! All the time. Everywhere. In my car. At work. At the movies. Morning, noon, and night. I even get up in the middle of the night to feed my habit. I openly carry drinks with me. In public. I am not ashamed of my drinking problem one bit. What’s more? I expect my family to not only support me in this, but to supply me as well.
    Why? Because my drink of necessity is water. With a little salt added. This is what a person with Sjogren’s does. Drinks. Water. Constantly.
    I know that in recent years the fitness craze has turned everyone on to carrying water bottles with them. But this is not the same as what we-those with Sjogren’s-do. Fitness people carry small bottles of “In” water with vitamins or energizers or the flavor of the day. We do not. We cannot afford to. We carry plain water. In super mega refillable liter water bottles. Because we actually drink it. All day long.
    Here’s the deal: An average 150 lb person at an average altitude, in average weather conditions, not pregnant, breastfeeding or feverish, and getting 10 min of exercise daily would need 76 oz or 2.3 liters of water per day to stay hydrated according to the water calculator app http://nutrition.about.com/library/bl_water_calculator_results.htm*
But the thing is, our bodies don’t process water correctly. Our bodies attack our moisture centers. So we are continually dry. We need more water just to break even. And there is no calculator for that.
    You see, a Sjogren’s body needs water to swallow food, to speak, to digest, to move smoothly, to build blood volume, to see clearly, sometimes even to breathe-(Have you ever felt like your lungs were filled with hot cotton, your eyes with sand, or your throat with glue? I thought not.). All of these actions require moisture which we do not produce well. We also need water to prevent our bodies from making stones. Kidney stones, gallstones, tonsil stones-yeah, those are real! Because our moisture centers are often swollen, the normal amount of water isn’t be able to be processed and do it’s job. We need extra just to do the same work. So we need to drink all the time.
    And we are many! You may not be able to spot us in public easily, as I said, everyone seems to be carrying water bottles now, but at home the signs of our drinking are everywhere. There may be empties all over the house or the recycle bin will be overflowing with our bottle of choice. I handle my drinking a bit differently. You will see a colorful collection of refillable containers all over my house. This leads to people never quite knowing what I’m drinking or how much. Which can cause problems of it’s own. I have been stopped and questioned going into the courthouse for work, going into the SSA for work, going into concert venues with my kids, and during a traffic stop once (I’ll admit that one was because I had had beer spilled on me and really reeked of alcohol)!
    So now I carry a doctor’s note explaining my water. It literally states that due to my medical condition, I must have water with me at all times. Yes. I am 49 years old and still have to resort to pulling out a doctor’s note to carry water with me on occasion. Seriously. My cane can be used as a deadly weapon but there seems to be no issue with that! (Or with the narcotics in my purse but I’ll leave that for another post…) But try to walk into a hockey game with an unopened bottle of water! (They allowed it but took the cap away…)
    So next time you are at dinner and the person at the next table orders their meal and an entire pitcher of ice water, don’t stare. Just understand that they are sick-chronically ill actually, and they have to drink like that. It’s just the way their body works. And if you are security somewhere I am attending, remember this; I have a cane and am not afraid to use it!
No one messes with my water!


**As a special note, it is possible to drink too much water which can be deadly. Sjogren’s patients need to monitor water intake with their doctors as well as be aware of their urine output in relation to the amount of water they are drinking.**

*Hydration Calculator from Nutrition.About.com

Thursday, October 22, 2015




What I Wish Had Been Said To Me When My Kids Were Little...

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    Sometimes, I have a dream of myself much younger sitting on a bench at the park watching my boys trying to climb the stone whale to get to the water fountain at the top. They are young and active and so cute! And the me I am now comes over and sits down to talk, to tell me things about the mother I am becoming. To tell me about being a mother who is chronically ill.
    But I have no flying blue time machine, yet, so I will tell you what I wish had been said to me when I was younger. When my boys were toddlers. Maybe I would not have felt so alone back then. Or so wrong and inadequate. Back when I struggled every day to take care of my boys the best I could, second guessing myself every night. Because that’s what you do when you are chronically ill and have children.
    I want to tell all the moms out there who are chronically ill, in pain, or disabled what I wish I had heard because I’ve been there. And I know. And you are not alone.
     I’ll start with the basics. Housework. I don’t mean get your spouse to take care of it all-not that someone shouldn’t help out so you can rest. No, I mean the idea that clean isn’t everything. I understand that with kids in the house, there is a certain level of cleanliness that has to be maintained. And that is fine. But believe me, if the toys stay on the floor another day so you have energy to read that bedtime story, so be it. If the towels don’t get folded and put away, no one will notice. I used wrinkled towels out of a clothes basket for years. (The wrinkled shirts didn’t go over so well) There is no perfection in life and living with an unpredictable, chronic disease means never knowing when or how it will strike. Pick your housecleaning battles wisely. Time with your family is more important than dust on the coffee table. Kids can draw in dust!  And tomorrow, you may feel better.
    Also, magazines tell you to save time by putting together activity bags for kids for a rainy day. I say take it one step further. Invent activities that allow you to be sitting or lying down to be involved. Games like sock golf (no clubs-9 paper bags on the floor), camp out (yeah-in the living room. I napped), or color clues (I drew clues they had to color in to find the next clue and eventually a treat). My kids became experts at card and board games because I could play laying down. And don’t count out the movie marathon. Your kids won’t be ruined by a day of snacks and movies under the blankets cuddling with you because damnit you’re just that sore or tired. I can still quote The Mystic Knights and sing Elmo’s Song. Your kids want your time, not your physical prowess and there will be days you can take them to the ballfield!
     Most importantly-your children don’t know you are sick. Not really. Sure, you tell them. I did. To explain why mommy can’t take them to the park today or why mommy is on the couch again. They may even complain about your illness getting in the way of things they want to do. Children are great at playing the guilt card. But they don’t really see you as sick. They see you as MOMMY. MOMMY who may be sick sometimes, but MOMMY. And that makes you the most important person in the world to them and they love you for it. No matter what. So although you may think they see you as sick mommy, when they see you, all they see is L-O-V-E.
    The proof? My kids have never known me healthy. I was diagnosed four months after my youngest was born. I have never had a really clean house. I let them down by making well intentioned promises (just don’t) and being too sick to keep them. Yes, I managed to go to most of their baseball games, but at a cost and always covered up from the sun and with an umbrella. (Quite the embarrassment) And they never brought many friends over.
    But now? They both have full time jobs. They bring friends over. A lot. And I hear them defending me if I’m laying down-again. They get upset if they see me trying to do something they think I shouldn’t-whether or not I feel good that day. They protect me. They see beyond the physical and have all their lives. They have never judged anyone and have stood up for those with disabilities at every turn. And  my extremely shy 19 year old kid, who hates talking, took the phone from me during my disability interview to explain what kind of person I am and what kind of mom I’ve been and how much he sees me struggle even though I won’t admit it.
    They work hard, they play hard, they get dirty, and they truly care about people. This is what they learned growing up with a chronically ill mom.

    So, newly diagnosed mom, your instinct may be to feel like a bad mom or like you are simply inadequate because your house is messy or you can’t go for a walk with your kids today, but I am telling you that that is very, very wrong. You are exactly enough because you are MOM and you are awesome!

Tuesday, October 6, 2015

To Be, Or Not To Be...Sick.

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    Recently, I had to make a decision I never wanted to have to make: leave an event that was all about my kids, or stay and possibly create a scene and humiliate them due to my disease. The event: My son’s twentieth birthday dinner. The problem? I was suddenly overcome with weakness and that eerie feeling that I was about to faint. I left just as our meals were being served and spent the remainder of the dinner in the car reclining. My son understood even though I still think I ruined his birthday dinner.
    The reason for this letter however is what happened while I was resting in the car. As a few people passed by the car, I overheard one of the girls say, “look in there, she must be passed out drunk and they just left her there!” while the others laughed. Really? No thoughts of ‘is that person OK?’, ‘do they need medical attention?’, or even ‘could they be dead?’? No compassion or empathy. Just ridicule and keep moving as so much of our society seems to be now. The comments took me back to other statements overheard at work, at home, even by my own mother about how to manage my disease. A disease they will never truly understand. So here is some education.
    I am chronically ill. I have an autoimmune disease, three in fact; Sjogren’s, Fibromyalgia, and MCTD. Autoimmune diseases are diseases in which a person’s own immune system attacks specific parts of that person’s body (not to be confused with AIDS in which a virus attacks the immune system itself). Examples are Rheumatoid Arthritis which attacks the connective tissue, Sjogren’s which attacks moisture producing centers, and Lupus which attacks pretty much anything. There are hundreds of autoimmune diseases diagnosed by various tests and differentiated by what they attack and most have no cure.
    Since all this attacking is going on inside our bodies, we don’t look sick. The more severe cases of RA do produce noticeable deformities on the joints, but unless we tell you we are sick, you generally won’t know. And we do hide it. We hide it so we can work. We hide it so we don’t seem whiny. And we hide because you don’t understand, you can’t understand, what it’s like day in and day out.
    So let me tell you: these diseases are like little monsters that have invaded our bodies and which we cannot control. There is pain. That is the obvious part. The part people understand. Wherever we are being attacked by the disease, we swell up. And swelling causes pain. For me, it’s in my joints, my head, and my eyes. But swelling also causes fatigue. That is a hallmark of autoimmune diseases that most people do not understand and most of us have problems explaining. We are not just tired like we stayed up all night and need extra sleep. We are tired beyond the ability to move. Where raising an arm seems impossible. I have had to crawl up the stairs to get myself food and water due to this fatigue. It’s why we may seem so spaced out or uninterested when we are out to lunch with you. We literally lack the energy to concentrate that day. And if that’s the case, know how special you are to us that we used all our reserves just to be able to be there.
    Our diseases also cause mobility issues, balance issues (I call it meeting the wall), dexterity issues, dizziness, tremors, and the ability to get sick at the drop of a hat. Do not look at me cross-eyed, I may get yellow fever. My immune system doesn’t work right, remember? And for me, I get dehydrated easily and lose my blood pressure. Hence the need to run from my son’s dinner. The point? Hundreds of diseases, thousands of possible symptoms or combinations of symptoms all waiting to break free. Can I get a “woot-woot!”?
    Remember also that most of us take medication-maybe more than one-to suppress our immune system in an effort to keep it from flaring up and wreaking havoc. None are 100% though and all have side effects. Side effects that are sometimes worse than the disease itself. And meds can stop being effective. So many of us are on a roller coaster of finding the right med, the right combo, weaning on, weaning off, or waiting out side effects to see if they go away. There are meds for pain, meds for muscle spasms, meds for depression, meds for migraines, meds for energy, meds for sleep... So many medications and yet no cures. And not all meds are approved for each disease so our insurance won’t necessarily pay for our medicine, even if it’s the one that works. Just for an added stressor.
    So a piece of advice? Please understand that we are fully aware of our bodies and how they work. Telling us that we should not have done A or should have done B while we are experiencing a bad flare up is not helpful. The truth is that there is every likelihood we would be in just as much pain had we done nothing but sit and watch movies. We live with the reality that on any given day we will wake up in a full blown attack no matter what we do to prevent it. All we can do is treat the symptoms as they happen at that point.
    Please understand that our diseases are constantly evolving and our symptoms can and will change and probably worsen over time. New symptoms will develop. We are not making it up even if you have not heard us discuss a particular problem before. These diseases are degenerative. No one knows how each individual’s disease will progress, but they do. And when they do, understand we feel like we are losing another piece of ourselves to this insatiable little monster. We may need to rant, rave and cry. Again. We even second guess ourselves. Mostly, we have learned to accept our diagnosis. Our goal is simply to live our lives without the monster taking control and interfering. But it happens. It will always happen. And when it does, if you know what we are dealing with, support us by telling us it’s ok or asking if we need anything. Just don’t tell what we should have done differently or how we might have caused this in the first place.








Friday, October 2, 2015

  

 What is Comfort?

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    What makes me comfortable in my world of living with a chronic disease? It’s an interesting question. I have pain. A lot. Maybe not daily, but close to it. So in looking at this question and request for posts, I had to do a lot of thinking.
    You see, in my blog, though I try to keep things funny, I am also very blunt. Chronic diseases are tiring to live with. The stress of the near constant pain, the fact that we keep our symptoms hidden from others due to the chronic nature, the fact that we are not believed in most cases because we look healthy, and knowing there is no cure can turn anyone into a mushy lump of pasta!
    Yet everyone I know with a chronic disease is good natured, happy, fun to be around. There is a certain grace in acceptance that allows us to just live, even in the continuing uncertainty of our lives. So in thinking about what makes me comfortable, or what makes me feel better, is it so strange that I say I find a certain comfort in my disease?
    You may think me crazy, and at this point, I very well could be! But I have spent nearly 20 years of my life sick. I have ranted, cried, fought the disease, fought my pain, fought my doctors, and for what? To end up in the same place I probably would have been in if I hadn’t expended all that energy fighting. So I gave in.
    Do not mistake that for giving UP. I will still try treatments that seem worth attempting to slow the progress of this disease. i have a lot to do yet. I simply gave in to accepting who I am: A person with Sjogren’s. And that is what gives me comfort.
    You see, I can now wake up and be in my skin with whatever symptomatology is there that day, and I am OK with it. I accept it. I recognize it. It is familiar to me and I know how to deal with it. If you ask me, no I do not want to be this way. But I am. So I deal.
    I’m swollen? Get up, drink, move a bit, take my meds-it should dissipate. I’m in pain? Wrap up in my favorite blankets-and maybe grab a teddy bear! I call it cocooning. The extra heat helps my pain and stiffness especially since I already take a daily pain meds. My back goes wonky? Lay down on my back with my legs up. The familiarity of my symptoms is comforting. What is not is when they change.
    The sudden onset of pains in my wrists that are so sharp I drop things causes anxiety. I don’t know what it is or what to do. A sharp pain in my right knee tells me I have to shake it out-no I do not listen to Taylor Swift while doing so. Swelling moved a nerve. When I couldn’t breathe due to pain in the center of my chest, I flipped for a bit. I had never felt that before. I thought it was my heart. I know now it’s my sternum moving when I swell. Now it is familiar. Now I can handle it. I am comfortable with that symptom. My wrists have not yet been explained and I don’t yet know how to handle them. I am not comfortable with that.
    So yes, I live with a disease that is chronic, painful, and has no cure. Yet in some strange way, my intimate knowledge of my disease actually causes me comfort in that I understand it. I understand my body. I know how to make myself feel better. I may not be able to control this disease, but I know it well enough now to control how the symptoms affect me. And that is extremely satisfying. And ultimately comforting!

Sharilynn Battaglia
10/2/15