Monday, May 23, 2016

What It Really Means When You Call Me LAZY


    I have an autoimmune disease. This means the antibodies that are supposed to attack infections and keep me healthy actually attack parts of my body instead. And unlike being sick with the latest bug making the rounds, there is no rhyme or reason as to why my body goes on the attack when it does. My immune system basically has a mind of it’s own and dealing with the constant roller coaster of effects that has on me is exhausting. So when someone who doesn’t get it calls me LAZY on days when I’m at my worst, it really upsets me. Here’s why:

  1. Calling me LAZY implies that I have a choice. It implies that for that day at least, you believe that I have the ability to do something and that I am simply choosing not to do so. But the reality is, when I am in bed, it is not a choice. It is a necessity. My body has been fighting the constant attacks of my disease and has surrendered. It needs rest. And nothing I can do will overcome that need. Not dinner, not laundry, not even my kids who just want to go for a walk. Nothing. Because my body and this process is not under my control. And at that moment, I truly have no choice but to lay down. Believe me, I would much rather be living in a cleaner house instead of one where I see my own limitations daily.
  2. Calling me LAZY says you do not respect me or my situation. Calling me lazy is dismissive. It is putting a judgement on me based on your perception of the situation. Yes, there is plenty of work not getting done. I rarely do dishes. My hands are no longer strong enough to scrub them. My house is cluttered. Bending and twisting to pick up stuff can be extremely painful. But to look at my house knowing that I have a chronic illness and expect it to be maintained at a level you deem appropriate is insensitive and shows a lack of respect for a situation that I struggle with daily and has completely taken over my life.
  3. Calling me LAZY is the same as calling me a liar. When you use the word lazy, you are holding me to standards I cannot meet because I am sick. But the simple fact that you expect me to meet these standards shows that you don’t accept my diagnosis. It tells me that to you, my disease is just a word and that despite what every doctor has stated, you feel I should still be able to ‘perform’. But I have tried and continue to try daily. And using the word lazy to describe me negates not only all my efforts, but the reality I live with daily. And coming from someone who is supposed to care about me, that feels like a betrayal.
  4. Calling me LAZY makes me worse. Having a disease that comes and goes randomly and can cause daily pain has already put me in a position to have to work harder than others to get the same amount of work done. Loading the dishwasher may take you 10 minutes but I will need to stop halfway through. Even on a good day, my hands will get sore and I will have to rest my back. But I still do it. Because it needs to get done and on that day, I can. So I push myself. But when you call me lazy, I push myself harder just to meet your expectations. And that’s not good for me. Overworking my body will only cause more flare ups and more severe pain. And chances are, I still won’t be able finish the tasks I take on. It’s a lose-lose situation.

    So the next time you feel like things in my life are not up to par, remember that chronic illness is a part of my life. Remember that it is real and that it affects everything I try to do. Remember that I do what I can when I can and then some. And think about how you would feel if it were you trying desperately to reach a goal that in the end, you know you just can’t.

Friday, May 20, 2016

Here We Go Again


    Those of you who follow me (Thank You Soooo Much BTW) know that I write sporadically. I just posted a few days ago, but as writing is my outlet, and there is still a huge issue on my mind, I am writing again.
    So here’s the thing: we are going on vacation in two weeks. My husband is playing in a poker tournament in Las Vegas and we planned a whole week there in the hopes he will do well. The problem? I am not very excited about going. And I know I should be.
    I mean who doesn’t want to go on a vacation and get away from all the normal crap they have going on in everyday life? Apparently, ME. And here’s why…  Everything I want to leave behind and escape will be travelling with me. No, not my husband! (At least  not this time!) I am talking about my disease. The pain, fatigue, and the constatnt need for recovery periods after a simple day out.
    You see, our last vacation was to California in 2015. It was my dream to see Glass Beach and to see the waves on the west coast. So we went. And I loved every minute of it. But it was a year after my first cracked vertebrae. And it was rough, physically and emotionally. It was a constatnt struggle to keep myself mobile, relatively pain free, and not bring down my family while we were out and about. I brought a cane with me for the first time ever on a vacation and it was still difficult. But I managed.
    Now, a year later, I have endured yet another fractured vertebrae and my disease, as AI diseases will, has gotten worse. The effects of these have increased my pain and fatigue levels and created a situation where I rest my back on an almost daily basis by laying on the couch. How is this conducive to enjoying a vacation?
    Beyond the physical pain though, is the emotional pain and guilt I am currently feeling. This trip is my husband’s dream. And I don’t want to ruin it. But I can’t help obsessing over the fact that it will be Vegas-in June. A town where walking the strip to see the sights and attractions outside the casinos (which are huge by the way) is what you do. And for someone who has trouble with walking any real distance and can’t stand to be in heat at all, well, I’m a bit terrified.
    It’s not that my husband doesn’t understand. I am lucky, my family goes out of their way to try to accomodate me and keep me safe and healthy. But to bring my husband forcibly into my world of sickness on a trip he has been looking forward to for years is something I just can’t wrap my mind around. And that’s what this is all about. And where my brain is abandoning me.
    You see, I am at a stalemate. I so want to be excited and looking forward to this trip. I want to be as excited as my husband is. And for certain things, I am. We are seeing Criss Angel and I will be meeting a Facebook friend for the first time ever! Two things I have wanted to do for a very long time. But the fear of my limitations and my body’s unreliability overshadow all that I should be looking forward to. And this time, I am at a loss as to how to work around it.
    So for now, I will do what I always do, what people like me always do, and simply plan. I will pack clothes that keep the sun off of me and extra medications for pain that I have access to but rarely use. And I will smile. I will strap on my back brace and pray for an easy landing. I will ask for a wheelchair in the airport if I need it and get to our connecting flight in time instead of hobbling as fast as I can and ruining the next leg of our journey. I will choose every opportunity to be safe.
    And when I get there, I know I will finally feel all the excitement I should be feeling now but that my disease has stolen from me. And I will have fun! Because being chronically ill can only steal from me as much as I allow it to. And I refuse to let it steal the fun from my life!


Wednesday, May 18, 2016

Why I Wear Rings


     I’m a jewelry person. I LOVE my jewelry. I have rings, bracelets, earrings, necklaces…  And I wear them a lot. And a lot at once. It’s rare for me to have a single necklace or bracelet on and my hands always sport multiple rings. This may seem like an exercise in vanity or that I am high maintenance, but it isn’t and I’m really not. Even though I don’t leave the house without full makeup on and I don’t just color my hair but add highlights as well, it’s less about attention and more about concealment. And it's all come about because of my disease.
    Here’s how it works…  When I first got sick, my Sjogren’s affected my wrists almost exclusively. I had the dry eyes and dry mouth, but my wrists hurt like Hell and were constantly swollen. At first, I stopped wearing bracelets because I couldn’t find any that fit. I endured questions about the lumps on the sides of my wrists and I had to take numerous breaks at work to rub them and sometimes even ice them.
    But then, I found stone beads. I was (and still am) an Autism Specialist and was given an Autism awareness bracelet made from real stone beads. Natural stone is much cooler to the touch than plastic beads or even metal and this bracelet felt awesome on my wrist. I learned how to make them and was soon wearing up to 10 per wrist. The weight and coolness helped the swelling and pain in my wrists and I could keep some in the freezer to switch out during the day. In essence, I had made a wearable yet pretty ice pack. I was camouflaging my disease while treating it at the same time. And my personal style was born.
    You see, as my symptoms changed and worsened, tricks like this became more necessary to come up with. Like the necklaces I own that I can keep pills in that don’t even look like they open. Or the ones with soft, polished, palm sized stone pendants that can alleviate hand pain when cooled or be squeezed when my pain becomes difficult to bear. I have crystal “wands” that are, in actuality, great massagers for palms, shoulders, legs, and feet but look like a simple long necklace that I layer with matching shorter ones. And my rings? People see them before my swollen, bruised knuckles. Who would ever guess 80% of what I wear can also be used therapeutically?!
    As far as my makeup goes, I cannot be in the sun. The components of sunlight not only react with some of my medications, but can set off my disease as well. I started using only sunscreen or the tinted moisturizers as Sjogren’s, drying as it is, requires me to moisturize a lot. But that wasn’t enough. I also “rash out” in the sun. It started as deep purple triangles from cheekbones to jawline. Lately though, I develope smaller bright red triangles. (These are called Butterfly rashes and are common with Lupus which is a part of my MCTD). I decided I couldn’t beat the rashes, or predict them, so I now pair my blush color to the color of the rashes. It makes them a whole lot less noticeable when they happen!
    But my lips are also greatly affected by the sun. Go figure! They peel regularly and if I am not careful, the will swell and split. Tinted lip gloss didn’t cover well enough so I started wearing lipstick daily. But lipstick alone looks kind of weird and since I have other symptoms to deal with, full makeup it is!  My eye make up is simply because I happen to think my eyes are my best feature and have long natural lashes. If I have to do the rest to protect my face, I’m going all the way-HELLO!
    And that leaves my hair, baby fine and impossible to do much with. Until I was put on Methotrexate. For some reason, that med gave me texture. So I took advantage of it while I could. But now, “doing” my hair is tiresome. It takes energy I rarely have after showering. So I keep it short. And if I have to have it shorter, I’m certainly not going to have it “mousy”. I found the best stylist on earth who breathes life into my hair even though it’s a “do” I don’t really have to “do”!

    I guess the real lesson here is that there are always little things we can do daily to make ourselves feel better. Even if none of my tricks can truly stop my pain, they all help. But add to that the fact that when we take care of ourselves, pamper ourselves, and go out in the world looking good, we naturally feel better about ourselves. Our confidence goes up and yes-we feel less pain. That being said, for most of us, getting all fixed up is hard. But maybe, just starting out by finding that one special accessory that makes you feel like, well-you, would be a good place to start. After all, none of us wants the focus to be on our disease all the time, right?