Thursday, July 28, 2016



How Chronic Illness Can Come Between
A Husband And Wife



    I have been married 26 years. I have been I'll for 20 of them. At first, it seems that the marriage vows will guide the process and spouses pick up the slack, become caring and hug a lot. “You go rest… You need your rest…” Words that are needed, said, and believed flow unchecked. Because together we can get through anything!
    But then resentment starts creeping in. “go rest” becomes “didn't you rest enough yesterday?” or “I've had to do the dishes all week! Aren't you better yet?” Our spouses can see we are not better, but don't know how to deal with it. They cannot fathom a never ending illness after vowing ‘in sickness or in health’.
    I am 20 years in now. Way past the honeymoon period and definitely beyond the “We can get through anything” phase. You see, we CAN get through everything, especially together. But what we CAN’T get through is every single day after day of illness, pain, and side effects. And no one said we had to. But yet, we assume we should.
    When we take the marriage vows ‘in sickness and in health” or “for better or worse”, people don't truly believe they will get the sickness or the worse. And if they do, they don't think about the long term issues because we are taught that we can get through anything-right?
    But to ‘get through’ something hints at an ending. Like the 6 weeks we went through eating hot dogs and mac-n-cheese to save up for a mistake that cost us 1400$ at tax time. We got through it. And now none of us eats hot dogs or mac-n-cheese anymore.
    Getting through, however, is NOT something that is possible with a chronic illness. There is no end. It's ALWAYS there. Hiding on good days, wreaking havoc on bad ones. But never going away. This would equal eating hot dogs and mac-n-cheese forever. No hamburgs, no chicken bbq. Just hotdogs and mac-n-cheese. Til death do us part. Ummmm. No. Not gonna do it.
    But here's the trick: you don't have to. Being chronically ill means there will be stress and bad days and lots of curveball issues to get through. And those we do. But being chronically ill also means we must rest. In order to do that, we must accept our illness for what it is. Never ending. And with that acceptance, we can learn to be content in our illness on days we just can't fight. The days we won't get through. So don’t.
    Don't worry about getting through the pain or lack of energy to do one final load of dishes or fold the last load of clothes. Today, just be. Go back to getting through tomorrow when you are fresh and hopefully in a better place in your disease. Pick up the fight and the getting through anything in sickness and health tomorrow. It will all still be there.
    And for those of you who think that it's akin to quitting - it's not. It's like having a nice bit of steak and salad 4 weeks into your mac-n-cheese diet so you can keep going until you save that money. It's having a bite of chocolate when on a strict diet during competition season as a pick me up. Resting within your disease and just being for a day is the necessary treat or kindness you give your body so it can continue to fight and ‘get through’ when it needs too.

    Because if you don't do little kindnesses for yourself, you will burn out. Mentally, physically, and disease wise. And your family will too. They need time to be with your disease. To be mad. To be sad. To just be and accept what your life is like. To be able to set aside all of this weight in order to see all the beauty that is also a part of your life. Because we all said for better and in health and we deserve to appreciate those days when they come. That is how we continue on and ‘get through’ our lives.



Facing The Unthinkable: Caregiving as a Chronically Ill Daughter

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    Recently, my mother, who is 83, had her knee replaced. The surgery went well and instead of sending her to rehab, she was sent home to recover. I went over to help her daily with repositioning her pillows, getting her mail, her lunch… Easy stuff. But then the unthinkable happened. Mom fractured her back reaching to take off her socks. Yup. Taking off socks sent me to a place I’d never considered as a chronically ill person. Being a caregiver. And as the person who usually needs care, I feel totally inadequate to the task.
    You see, I have already experienced the pain of a fractured back. Two to be exact. And I have a chronic degenerative disease as well. I exist in a world of pain. But now, my mother does too. And though I have two siblings, I am really the only one capable of caring for her. Me. The sick, weak daughter on permanent disability with lifting restrictions. This is so far outside of my realm, it would be laughable if it weren’t true.
    But it is true. Mom needs me. I’m available and believe it or not, I am trained to do this. My entire career was based on assisting those with disabilities. And I did it well. Until I became disabled myself. I gave up the career that brought me so much joy. And having done so, it never occurred to me that I would be needed that way again. My mom, though  older, has always been healthy. Until now.
    So how do I reconcile my needs and hers? How can I consider not doing for her even when my body is wracked with pain? And how do I explain or expect her to understand when my body gives up and she still needs more from me? I love my mother and I know raising me was not easy. I absolutely want to be there for her in her time of need. I always have. I just didn’t expect to be sick when the time came. But I am sick and she is injured. It’s a perfect catch 22.
    And there is no perfect solution. I take care of her phone calls. I fight her insurance company. I take care of her house. I water her plants. I go to her rehab and make plans for her to come home. I make her bed. I do her laundry. I lift her and position her when she cannot do it herself. I help her shower. I help her go to the bathroom. I clean what needs to be cleaned. I go home and crawl into bed with my pain and my medicine and think how much more I should be doing. How much more I could be doing were I not so damaged by disease. Then I wake up and go back.
    I don’t know how long it will take for her back to heal and her independence to return. And I don’t know how long I can do all the things I am doing. I have taken days off while she is in the rehab facility so I can convince myself I’ll have more to give when she comes home. But day to day, my abilities are a crap-shoot and her needs are consistent. So I keep doing and I keep questioning.
    I know I am forgetting things and I know things are not being done how she would like them to be. I sleep too much and do not get to her early enough. I also know that I am giving more than I am and it’s all I can give. So I have to be the one to accept my limits and know its ok. She’ll have what she needs if not all that she wants. She’ll be taken care of until she can do so herself. Because she is mom and she deserves it.
    And I will face what inevitably we all face at some point. That personal judgement and expectation we put on ourselves as ‘Chronically Ill’. As parents or spouses or friends or children who are “SICK”. Who question whether we are good enough at any or all of the above.

    I say we are. We are good enough parents. We are good enough spouses. We are good enough friends. And we are good enough children. We are not perfect. But we are good enough!

Friday, July 8, 2016



What I Learned About Chronic Illness From RHOBH and Yolanda Hadid

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    I am a reality TV junkie. I admit it. I enjoy watching people whose lives are going worse than mine even though they seem to have it all. Because, realistically, no one has it all. There’s always something lurking around the corner to take you down. For me, and for one woman on Real Housewives, that thing is Chronic Illness.
    Last season, for a housewife on The Real Housewives of Beverly Hills, Chronic and nasty health issues were the center of attention. Yolanda Foster was dealing with a diagnosis of Chronic Lyme Disease. Yet throughout the entire season, Yolanda looked relatively healthy and was able to take part in several “normal” activities. That became the story line for the entire season: was she healthy or not? And all the hubbub was based on her outward appearance and activities on the days she actually had energy here and there. Both hallmarks of most Chronic Diseases, such as Lyme, that her friends neglected to understand.
     Here’s how it played out. Yolanda had been diagnosed in the previous season with Chronic Lyme Disease. Being who she is, she has access to, and utilized, a variety of treatment options most of us don’t have. Also being who she is, she was very open and forthcoming about her life at that time posting pictures of treatments such as IV infusions, having her breast implants removed, and having all her metal fillings out in order to combat the effects of the disease and try to find a cure. She showed us her closet full of medicines and supplements that she took daily to help lessen her symptoms and improve her overall health while fighting the disease. A former model, Yolanda showed us herself at her lowest; with no makeup, no glamour hair, in pajamas and in pain. Just a real person tired and fighting a relentless disease. But she also showed her good days. Days when she had enough energy to go out a bit or visit friends before collapsing back into bed. Or the infamous day on her boat gaining much needed energy from the sun and sea around her no matter how tired she would end up that evening. Yolanda let us into the realities of her struggle.
    So it was very disappointing to see her friends question her authenticity. They questioned her reality-being so sick one day, yet up and around the next. Apparently, research was done into her condition but instead of info on Lyme, the word “Munchausen’s” came back as a possible explanation. Munchausen’s! A mental disorder of it’s own where the sufferer makes up symptoms to garner a feeling of importance through the need to be cared for. This is the same as accusing her of faking her illness. Let me tell you, the one thing those of us with Chronic Illness never want to hear, yet hear all to often, is that we are faking our illnesses. In this case, not one friend researched actual Lyme Disease. Had they, they would have found out that there are good days and bad days and the mechanisms that keep this disease active are unknown at this time. That’s the research that should have been done. And a true friend would have. But it remained a theme all the way through the season that she could be faking her illness. Deplorable. For every one who may be faking it, there are tens of thousands who are not and whose life is hell and totally out of their control due to a Chronic Disease and the treatments.
    As someone who suffers from a Chronic Disease myself, I found it difficult to accept this course of action by her so called friends. This woman, who needed the most support of her life, got none. Her friends were not there for her on the days she was at her worst, which is when all of us who suffer from Chronic Illnesses need you more than we will say. And she got judged for taking advantage of the days she felt good, which is idiotic because we all look forward to that day when we feel good enough to go out and be normal again. This was all caused by the inappropriate label given to a Chronically Ill women by her friends. Something that happens more than it should to all of us.
    So here’s my advice: When you have a friend who is chronically ill, research their diagnosis. How hard is it, really, to get acquainted with their symptoms? You will understand so much more about what your friend is going through. You won't have to guess or question what this symptom has to do with the disease because you'll already know. And your effort will be appreciated. Of the millions out there with Chronic Disease diagnoses, most are telling the truth. Please keep that in mind. Our bodies have become hard enough for us to understand so we can’t always explain it to you. But it's real! And the more you know on your own, the more helpful it is to us!

    Because I am dealing with something unpredictable and painful, I watch reality shows to escape. And I figured out that if I have to explain too many things about my disease to someone, maybe they are not a friend I need around. I certainly saw the extent of the questions Yolanda had to face and the fact that no one looked into her actual disease. At all! I did. Because I have Sjogrens and know nothing about other nasty diseases except that they exist. And if I could turn right away to the heart of the matter just being a fan, our friends in real life ought to be able to do the same thing for us if they really care. Right? I think so. So let's all be a little more like Yolanda, fearless enough to show what she’s going through and what these diseases are really like, and strong enough to say, “hey, if you don’t get it that I really am struggling with this, you can get out!”. Because having someone around who accuses you of faking the one thing that has become the center of your life no matter how much you want to be normal is just too much. And really unnecessary. So find your inner Yolanda and kick those disbelievers and debbie downers to the curb! Then go out and find that something special to cuddle yourself in and start inviting those who truly care and actually get it to come to a get together and have fun! These diseases suck, But dumping negativity and throwing a party are sure ways to up the good vibes. Any Real Housewife will tell you that!

Monday, July 4, 2016

Why I Don't Wear Shorts


Why I Don't Wear Shorts

     Summertime brings so many opportunities for fun and adventure. Even the clouds in the sky are lighter and happier than during the winter months. And being from Western NY, any time it's not snowing is a cause for celebration! But, summer also brings the need to shed the layers of clothing which protect us from the cold. Unless you are like me.
     You see, I have Sjogren's syndrome and MCTD. Both are autoimmune conditions in which the body attacks itself and both are affected by being exposed to sunlight. In the case of Sjogren’s, being in the sun can cause a flare up. Flare ups are the last thing you want to trigger when you have an autoimmune disorder. They are the process during which the disease attacks and damages the body. And they hurt. A lot. So for me, sunlight is a no-no.
     But living completely indoors is difficult. We all have to go out sometimes. And who really wants to live without fresh air and nature? I need to be outdoors near greenery or listening to the sounds of water and waves. So how do I indulge my love of nature while still protecting myself from the effects of my disease? Quite simply, I cover up. Head to toe. And that can end up making me look more like a Bedouin than someone from suburban Rochester. But it’s necessary. So I do what I need to do and ignore the stares.
     Here’s a rundown of my sun repellent wardrobe…

Tank tops. Usually that cotton jersey material we all associate with men’s undershirts. I have a rainbow assortment. They cover what they need to cover and can be worn with everything. There are even tanks covered completely with sequins to be worn on a night out. These are  a staple in my wardrobe because my body doesn’t regulate it’s own temperature. (It's really NOT Menopause!) Having the ability to literally take my shirt off to cool down and allow a breeze to hit my skin is a must.
Gauze shirts. That wispy lightweight material that can cover me up but still allow air to flow through the loose weave. These cover ups must be long sleeved. (And I am very tall. It's not easy finding sleeves long enough to cover my entire arm.) Any color gauze will do but my favorites are white, pale pink, and light blue. They reflect sunlight make me feel pretty. Paired with a tank top, I can completely cover my upper body with material that won't trap heat and trigger a heat-related episode or extreme sweating-two big problems for anyone with Sjogren’s.
Gauze again. But for the legs. Jeans are HOT! So I have invested in several pairs of gauze/linen pants. Being summer, pedal pushers and capris are always in style so I don't have as much of a problem fitting my long legs. I tend towards darker colors for my bottom half. I am becoming more confident in my body, but I don’t know any woman who would actually cover their behind with loose, flowy white material unless she's getting married!
More gauze. This is the piece that causes the majority of stares and commebts, but I have found it to be the most important of all. I have dubbed it my “Sun Shroud”. Nothing more than a lightweight cotton or gauze sarong, I use it to cover my head, neck, and chest- especially when driving. I want to point out that it is obvious to most people to cover up when in direct sunlight. But I learned the hard way that the sunlight that comes through windows, specifically car windows, can be harder on my body than just the rays I catch walking in the park due to being more intense. So I devised my shrouds. They have to be long enough to stretch from one hand to the other over my shoulders or if my head is wrapped (think Tina Fey in Whiskey Tango Foxtrot) they need to cover down to my fingertips. This way, I can wear them alone over a tank top if I so choose and still be totally covered.
An umbrella. I carry one all summer long. I was that mom at Little League no one wanted to sit behind. But sometimes, the sun is so bad that I need the extra protection an umbrella gives by allowing me to always walk or sit in a shadow.
     I have had 20 years to perfect my anti-sun wardrobe and to figure out which styles and fabrics work best for me. I stick to this ensemble whenever the sun is out. In fact, I have now developed a loose, breezy, southwestern style year round that has evolved from my medical needs. It serves me well. And I am comfortable in it. Even when I catch people staring. I see those stares as being complements. After all, I’m 6’1”, and I'm stylish. Who wouldn't notice that?