Saturday, October 1, 2016



I Have A Note

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    I have a question. And I want you all to think about it. What is “medicine”? Seriously! What makes an item “medicine”? Does it have to be a pill? Does it have to taste like cleaning fluid smells? Does a doctor have to tell you to take it? What if the thing that your body needs so desperately to work correctly is found just about everywhere on the planet and you can pretty much pick it up within 10 feet of where you are at any given moment?
    I’m talking about water. Yup - cool, clean, water. And your next question is probably what disease can be cured by water? Well, actually none that I know of. But there is one that creates such a dysfunction within the body that it creates a constant need to drink water. It’s called Sjogren’s Syndrome and it affects approximately 4 million Americans.
    Sjogren’s is an autoimmune disease in which the body’s immune system attacks its own moisture producing glands such as the lacrimal (tear ducts) and parotid (saliva) glands. Most people assume that Sjogren’s ends at dry mouth and dry eyes. But it doesn’t. Think of how much our bodies depend upon moisture. Our joints move smoothly due to lubrication that requires moisture. Our digestion requires all sorts of moisture and secretions to work. Our nerves rely on moisture to transmit the signals that allow us to move and feel. And our blood itself is a liquid that needs to stay at a certain volume and consistency to do it’s job.
    So back to my question about water. You see, due to the way Sjogren’s works, many who have it cannot process water correctly due to the digestive issues it causes. When this happens, we can quickly become dehydrated. The best way to combat dehydration? Drink water! Hence the question: what is a medicine…
    Case in point: for me, Sjogren’s flare ups that cause dehydration can strike fast. I start to feel thirsty and I drink, but the thirst won’t go away. I can drink until I feel like I am going to burst, but I will still be thirsty. It’s exhausting and I end up very weak and dizzy. BUT, if I can’t keep up with my body’s needs during the flare up, I will begin to “lose my blood pressure”. I have low blood pressure to begin with so if it starts to go down, it’s a big deal. During my 20 years of battling Sjogren’s, I have landed in the ER for dehydration at least once per year in all but two of them of them.
    So I now carry water with me everywhere I go. EVERYWHERE. Unfortunately, there’s a problem with this. There are certain places that do not allow people to bring in their own food or drink. But I do not consider my water “food or drink”. It is my medicine. It keeps me out of the hospital. Especially during the hot summer months. I understand the argument that these venues usually sell concessions and most have water available for purchase. I even understand the idea that these concessions are how they make their money. But again I say my water is my medicine.
    Look at it this way: I go through 5-7 liters on a good day due to dry mouth and just my normal dysfunctional Sjogren’s body. I don’t know many people who don’t have Sjogren’s that drink that much. Now, the venues that don’t allow food and drink usually do not sell big bottles of water, so I would have to buy several to satisfy my normal needs much less the needs I would have if in a flare up. Also, these venues charge astronomical prices! For the average price of 2 water bottles at most venues, I can buy a month’s worth of pills necessary to keep my constant pain at bay.
    And that’s my next point: not one venue has EVER taken away my pain pills. I doubt that venues ever take away anything perceived as medication ever. (And I have been to some sketchy concert venues that confiscated my lip gloss!) Imagine taking away someone’s insulin or seizure meds. Imagine being told, “You can’t take your nitroglycerin in with you but we sell some really expensive nitro at booth 5”. OK, so that’s a really dramatic example, but I don’t think we should be expected to pay for something that most of us with Sjogren’s must have with us at all times, even if it is only water because, quite frankly, I’m sick of going to the hospital for not having enough of it in my system to keep me upright.
    So now, along with my water bottle, I also carry a doctor’s note everywhere I go explaining my need for water. Lots of water. It feels a bit childish yes, but it works. One day, I hope that those of us who depend so heavily on water, won’t need to produce notes or ID cards to prove we’re actually sick. I hope there will finally be enough awareness about this disease that we are accepted as we are.

For now though, I have a note...