Friday, July 28, 2017

A logical answer to Trump’s LGBTQ mess
*Satirical comedy

    As you know, our daring leader trying to lead our country into the new era with much thought and consternation. As an educated and revered writer, I thought I’d release a set of possible protocols that the best minds in the country have come up with and rushed to an undisclosed location (somewhere in Florida). They are being introduced to Mr Trump as we speak in the hopes he will see that the only way the country will survive is for true equality to be enacted. The intent of these protocols is just that; to erase any and all inequalities that new legislation have created as well as to create better understanding on the part of the non-LGBTQ community as to how previous legislative protocols made them feel (hopefully). As Always, these are best read with a glass of wine and a grain of salt.

    First on the list is the bathroom bill. thought to be a no-brainer, there is once again confusion as to why it matters where anyone except truly perverted and dangerous people relieve themselves. And trust me, they don’t care. But since everyone else does, and actually checking someone’s special parts is illegal (awww!) we have come up with a solution! everyone loves card games, so there will now be dispensers placed in between every gendered set of restrooms in the country. (what tax dollars?) Everyone who needs to pee will now be required to draw cards until they have a matched set. That is the bathroom they will be required to use! This system has been devised because if we deny the rights of one group, we should all be denied right? It’s the “if I can’t have her then no man shall” mentality, except applied to toilets and across all of society. Under this policy there will be no more discrimination. At it’s core, it is a truly random system. It’s a perfect solution! Everyone now has an equal chance at being denied access to the bathroom of their choice! Armed guards will be present to enforce this process. Any questions?

    On to Marriage. This one required much thought and many nights were spent in debate. (or so i gather if my spanish can be trusted by the complaints I heard as the pizza boxes and beer cans were being picked up…) This is the best we were able to come up with: As of now there will be no more discrimination based on preference. All marriages are legal. marriage licenses will now be granted by random choice But hey have to be earned. Since there is such a love for reality TV in our current climate, challenges will be set up that have to be overcome. (And if you think about it, what is marriage anyway?) So from now on, 5 couples from each state-same sex or not-will compete for that state’s marriage of the week! And of course the wedding will be the wedding of their dreams! (and completely paid for by the federal government!) Challenges will be chosen from categories such as physical strength, trivia, beauty, and of course the all important broadway musical round! Both partners must compete in all categories because we all know the stereotypes about gay men versus straight men dealing with physical prowess. (Though I know some gay men that could pummel the sh… I digress) So if people really want to get married, let’s make them work for it. Licenses are handed out like candy now and the divorce rate is 50% or so. If you’re going to make the gays jump through hoops to get married, make the straights sing for it. everyone loves to see a good sing off right? (aren’t lesbians supposed to be really tough?) These weekly competitions could get interesting! And maybe marriages would last longer if they weren’t so easy to get in the first place. Oh! Don’t forget to tune in because audience members could win valuable prizes as well.

    Next comes community equality standards, which has been disguised as the religious freedom bill. (Seriously? I have no words.) But I am just commenting here, so let me explain the new system devised for this. And I will forewarn you, it’s expensive, but we are a consumer driven society so a lot of these new devices will have to be installed. Since the right to deny service to a person who identifies as LGBTQ has been hotly debated, there will now be electric shock devices installed at any and all locations deemed service providing locations. These include hospitals, bakeries, auto repair centers, day cares, (and you get the idea.) The shock devices will be put on a timer similar to slot machine mechanisms however the timing will increase the so called pay out. First come first serve standards will still apply but emergent situation (such as life or death versus sore throat) and economic status will not. Again, in order to ensure true equality, these devices will be completely random in operation. Place your hand on the metal plate and wait to see if you are approved or denied. Smaller plates will be available for children. Electrical shock was chosen to emulate the complete idiocy (shock) of being told you would not be given service for something as major as healthcare or as trivial as cake due to “my religious freedom” or “your life choices”. (Plus, seeing people get shocked is totally hilarious!)

And last is the latest transgender military service tweet. This is a simple fix. Recruits will now have to fill out an application, pass a medical exam, a psychological exam, and be judged on their fashion sense and make up application. (What? Too far??) OK. How’s this? New rule: Every person who wants to serve in any branch of our military has to disclose all the medications they currently take. The government can set a cap. During service, if that number rises for any reason, those meds get added. Then kick out guys during active duty for needing medication (possibly for pain) to serve. NO? Then kick them out for types of meds. Such as Sex meds. Oh, Viagra right? So no again. Psych meds! Oops-PTSD. So the issue really comes down to a needle or a pill they take daily or monthly? Seriously, just abide by HIPAA. Unless you have Klinger running around base camp, no one’s gender, preferences, or gender identity matters.

    Look, the Military is sacrosanct in my opinion. But in the light of our new mighty leadership, new standards must be upheld. New recruits must prove themselves more worthy. But coming up with a way was tough. Here is what we have determined appropriate for the new age: They must complete a pre determined time of intense training. They must be able to complete difficult obstacle courses and intelligence tests with extremely high marks. They must demonstrate that they know how to care for and utilize weaponry. They must master marksmanship courses. They must exhibit mental toughness in tests designed to mimic extreme circumstance. They must also exhibit the ability to endure in harsh conditions. (Oh wait! If they are LGBTQ, they already do that in the US!)

I have it on good authority that these new protocols are going into effect very soon. I suggest any of you who think you will be unduly affected start getting used to electric shock or if you intend to get married, find trainers. Although my true feelings on this issue are probably not very well hidden, Remember this is meant to be more comedic in nature. It is not meant to offend anyone. One last insight, There are rumors that a special artifact exists that, if found, would have the power to eradicate all of this evil spreading across our land. It’s referenced in ancient texts. If only there were someone…


Sharilynn Battaglia

Friday, July 21, 2017

Wonder Woman or Mr. Glass

Screenshot 2017-07-21 at 10.25.14 PM (1) - Edited.png

    When I was little, I loved cartoon superheroes. And even as a girl, I had several characters to choose from. But I didn’t imitate any of the standard “good” characters like Wonder Woman, Supergirl, or even Batgirl. Nope, not me! I chose a darker, more enigmatic character that I read about in the comic books most of our Saturday morning heroes were based off of. I followed the escapades of Black Widow and then reenacted them in my attic complete with gold toned bracelets and black boots.   

    I’ll admit, part of her appeal was the fact that she was a spy and considered a bad girl, which I definitely was not! The irony that I was morbidly afraid of spiders was not lost on me either. Nor was the fact that even then, I was showing signs of physical weakness. (I just did not know why back then.) So when I couldn’t breathe trying to complete the required mile run at school, I came home and read about Black Widow’s speed in capturing the bad guy of the week. And when I couldn’t climb the rope for the fitness test, I’d pretend I had her special web-slingers and climb to the attic ceiling. (The fact that the ceiling was especially low helped a lot!)Screenshot_20170722-011327.jpg

    As I grew, I retained an affinity for ‘doing good’ and worked with the disabled* but my health seemed to take on a life of it’s own. And like every Nerd knows, even good guys go bad sometimes. Remember Spiderman 3? (No, I’m not talking about the dancing.) So now I felt even more like the heroine of my youth. A lot of good mixed with something very bad. Well guess what? I spent my childhood fighting evil in my attic. I was already mentally prepared. After all, isn’t a disease attacking you from the inside the embodiment of an evil arch enemy?Screenshot_20170722-011521.jpg

    And this enemy is trying to break me. I feel like someone has stuck kryptonite EVERYWHERE. (I know, wrong analogy. Bad Nerd!) But seriously, I leave the house in hot weather, I wilt. Touch me during a flare up and I’ll hit you.
Touch me during a flare up and I’ll hit you. (Glad I didn’t pick Wonder Woman
now aren’t ya?) I fall And I break things. (Heck, I broke something bending over once!) Anyone remember Samuel L Jackson’s character in Unbreakable? I own braces for so many different body parts that I rival Iron Man’s armor! (His is much more stylish though.) I’m even weaponized with a cane like DareDevil, but mine can’t do cool stuff. (Note to self, upgrade cane.)Screenshot_20170722-011752.jpg
  So here I am, some 40 years after my attic adventures, and 21 years after being diagnosed. I have had many battles over the years. Many many battles. And I have won a lot of them. But I have also lost some. Such is the life of a closeted superhero. But I still believe in the tenets that superhero lore was built on. The good guy always wins. And maybe that doesn’t mean the whole war for those of us with chronic diseases. Maybe it just means the little battles. Because I know I’m always going to be sick. And I may lose the balance and grace (haha) I used to have, but a bunch of white cells that have clearly lost all sense of what planet they’re on are certainly not going to take away my sense of humor. Or my sense of right and wrong. Or the fact that I snort milk out of my nose if you make me laugh.
(Shhhh! That’s my real super power!)

*Side Note: Black Widow frequently partnered with DareDevil who was blind.

Sunday, July 16, 2017

What The Sports World Needs To Learn About Sjogren’s

Tennis ball and racquet on outdoor court

    Yesterday, I was reading about Venus Williams. You know, The phenomenal woman who plays tennis better than anyone ever, except maybe her sister? The Venus Williams who also happens to have Sjogren’s Syndrome. You know, the debilitating disease that most people think is just dry eye and dry mouth but is actually so much more? Ms. Williams first announced she had Sjogren’s in 2011 and it has been the subject of much discussion in the sports world since with Williams herself giving few interviews about it focussing mainly on her healthy diet and lifestyle. But the articles I read yesterday were about here latest tennis championship attempt and the role her Sjogren’s may have played. And I for one, wasn’t happy.
    Here’s my issue, which has nothing to do with Venus herself. The media seems to have no idea what they’re talking about when addressing the issue of Sjogren’s in connection with Venus Williams and her tennis. I really shouldn’t be shocked about this. Most people have never heard of Sjogren’s. I’ve had to educate most of my own care team over the past 21 years. Some doctors even now are still at a loss when I come in to the ER. So why should I fault the media?
    Because the media is supposed to do their research before putting out a story, or even a headline, for publication. So yesterday’s headline worded “[Williams] has overcome a lot...including...Sjogren’s” particularly upset me. My reason is simple. One does not simply ‘overcome’ Sjogren’s. It is degenerative and incurable. It does not go away, only into “remission”. Not even someone as strong as Venus Williams, a woman destined for the International Tennis Hall of Fame cannot overcome a degenerative and incurable disease. And to suggest that her daily struggle with such a disease is anything less than it is by suggesting the disease has been overcome  is to diminish what she on a daily basis; especially when she competes with this monster of a disease hiding somewhere inside her body like a tiger waiting to pounce.
    It also diminishes what rest of us out in the world live with and accomplish everyday with this disease. We raise children. We work jobs. We go to school. We manage families. We fight the monster. We fight and we keep fighting because there is no overcoming, just fighting, getting through the day, and waking up again. It’s a constant battle. It’s our lives. And it’s invisible. So many of us are told it does not exist, it can’t be that bad, and we are making it up. So we depend on news stories to uphold our pain and our struggle so our families know it’s real.

                              And then the media says it can be overcome.

                                             Do you understand now?

    And let me just mention the commentators. Believe me, I understand that they will know more than I ever will about tennis. I was a swimmer, ok? But they know nothing about Sjogren’s. NOTHING. And I do. So I may be overstepping here, but I have to call out John McEnroe. Tennis is a really demanding game. It’s fast paced and physically draining. Any player can “hit the wall” during their final sets. For McEnroe to say “Sjogren’ could be rearing it’s ugly head” in reference to Venus Williams and her seeming loss of energy is speculative at best and inappropriate in my opinion. I realize injuries are always brought up when players are not at their best, but this is NOT an injury. It is a forever thing that Venus will learn coping techniques for that may or may not always work. As an athlete, he should know most don’t like to have a loss blamed on old injuries, illnesses, or anything other than “Hey, she outplayed me today.”. And because her illness is chronic, it should not be brought into speculation. In other words:

  She has earned the respect of speaking for herself about her performance.

              Sjogren’s or not, she knows her body best and what affected it.

    So the moral of this very long rant for those of you in the media is; Ask Venus what’s going on, don’t assume it’s Sjogren’s. This disease is nasty but it comes and goes. Realise there’s no overcoming it. It’s degenerative and incurable. I get that Ms. Williams has more resources at hand to hinder the progress of the disease than I will ever have and that for her, that means more chances at “remission”, but for the sake of awareness, please write about this disease with accuracy. It helps us all.
                We all deserve respect for what we deal with-SJOGREN’S.

   PS: Keep up the good fight Venus, you’ve got a whole community backing you!


Thursday, July 13, 2017


     Technology That Can Help Those With Sjogren's

    For those of us with Sjogren’s Syndrome, life is full of unpredictable complications. This means we have to be prepared at all times. Usually, we do this by carrying a purse full of stuff that no one else even thinks of. Sometimes, it takes an entire extra bag of stuff. But there is something I have learned in my 21 years of being diagnosed and listening to my body and it’s triggers; and that is that there are things that reduce the need for some of this excess stuff. Actual products that have been invented that help Sjogren’s though I doubt that was their original intention. Here are my favorites and why:

1) My Tablet: OK, this is not a new invention, but as an English Lit major, I love to read. And I am quite good at it. Meaning I can devour a book in a day or two tops. Now I never thought I would give up my paper books, I love the smell, the turn of the page, the feel… But lately, my hands have been getting weaker and I have started to drop the books while I am reading. It is also getting harder to turn the pages due to my Essential Tremor. Shaky fingers make everything more difficult. So I switched to ebooks. No more dropsies, no more hand cramps, and the back lighting option is so much easier on the eyes that it eliminates headaches as well!

2) Migraine Glasses: For me, these have eliminated a lot of tension headaches and reduced many of my trigeminal headaches. They are designed for people with extreme light sensitivity. And as people with Sjogren’s, so many of us have that issue due to our extremely dry eyes. These have a pleasant pink hue and I am currently rocking the over Rx pair before I decide if it’s worth it to tint my everyday wear glasses.

3) Wrap Shoes: I know-what? These are relatively new on the market, but I was intrigued when I saw them. Sjogren’s can cause neuropathy. Not in all of us, but from reading my support group pages, it seems a great many of us have it. At this point, I really cannot feel my feet. So I get into a lot of trouble because I love walking around barefoot. Enter these wrap shoes. The sole is rubber, the top is rubber and fabric. The can be worn indoors and out. Not exactly for rock climbing, but then again, when was the last time any of us went rock climbing? They are comfortable, easy, and protective. What else do I need in my oh so hectic (LOL) life?

4) Litter Boxes: There are a lot of new “scoop free” litter boxes out there. With three cats and three recorded back fractures (only 2 of which I remember-go figure) scooping each and every clumpy thingy became impossible. My new sift tray system has made cleaning 3 boxes quicker than cleaning one was previously! My back feels so much better with these. And in the long run, the litter isn’t getting wasted adding to the overall benefits of this system.

5) Light Up Water Bottle: My overall favorite. My new water bottle. Though I wish it held more, it’s sensor syncs with my phone and keeps me on track with my hydration. As a Sjogren’s sufferer, I need to drink more than the average person. But as an average person, I sometimes get caught up with day to day activities-talking, watching a movie, running errands… If my own thirst does not become overwhelming, I can often forget to keep up my hydration at regular intervals like I should. Like we all should to be honest. I can program this bottle to my hydration needs and it will track my intake and remind me with texts and flashing lights when I am falling behind. To be honest, even the best of us could use reminders like this and it has been a real eye opener about my drinking habits!

    I know to some of you, these objects may seem odd and a waste of money, but to many of us with Sjogren's, these items can be the answer to problems we have been struggling with on a daily basis. And I totally understand that not all Sjogren’s sufferers will develop all the same symptoms, but knowing there are products out there just in case, at least in my mind, could be really helpful if the need arises. I spent months thinking researching these items and then thinking about trying them. They all actually worked for me. By writing this, I am hoping to bring some hidden but helpful products into the light.

Wednesday, July 12, 2017

Leisure Time


    So today I was watching Dr Phil. It was an old episode about a study showing how stay at home moms have more leisure time than they think. Granted, some of the definitions given for “leisure” were quite unusual, (getting a root canal if alone?), the basic theme of the show was redefining how we spend our time and if being busy is really the status symbol we think it is.
    I’m here to tell you it’s not and be careful what you wish for. This essay will be harsh. But the fact of the matter is, I am sick of people saying that they wish they had more time. Even more, I am sick of them saying they wish they had the free time I have. Because seriously people, you really do not want the free time I have.
Let me tell you why…

  1. I do NOT live a life of leisure. My schedule is filled with doctor’s appointments with life sprinkled in between. Today I was supposed to take my dog to the vet. But I wasn’t feeling good. So I had to cancel it. Now I get to try to fit it in between an eye appointment, where I just might get a lumpy thing removed, and my nerve conductivity test, yup-shooting electricity through my arms to measure how much of it gets to my brain! (sort of). Such is my life.
  2. Even when I have leisure time, I CAN’T leisure. It’s true. The days I spend at home doing nothing, I can’t usually relax. I’m either in too much pain, hence the reason for being home in the first place, or I’m trying to to get some sort of housecleaning done. And since my house is a complete wreck, I usually make very little progress.
  3. If I do get to leisure, I usually gets WRECKED anyway. Since my disease is unpredictable at best and comes on quickly at times, I can be out having fun one minute and unable to breathe looking for a chair the next. I bring my cane and water everywhere but it’s not always enough. Last week, I suddenly became dizzy and nearly fell over trying to sit back down at my volunteer position. I cuddle kittens. KITTENS! Not exactly physically demanding.
  4. When none of the above happen, I’m usually too exhausted to enjoy leisure. Either that or I really can’t decide what on earth to do. I do love to read but can’t count the times I have fallen asleep with a book. I watch a horrifying amount of movies. Twice. Because I literally cannot remember the ending. So you tell me, does sleeping count as a leisure activity?

    Like I said, be careful what you wish for. I was diagnosed when my second child was born. I was never in the position to overschedule myself and then wish for more time to relax. I only had enough in me to allow them to pick an activity and drag myself to it and then wish I needed less time. Less time for me. Less time for doctors. Less time for hospitals. Less time needing to rest. And more time running around with my kids.

Thursday, July 6, 2017

Am I Unpatriotic For Not Standing During The Star Spangled Banner


    Recently, I had an experience that made me question some of the actions that I have always taken as a person who experiences pain as the result of an unpredictable illness. The event wasn’t directed at me personally, but was so aggressive in nature that it actually caused some concern to me and several other people in the vicinity. And it was all in the name of patriotism.
    The story is this: My family and I went to a baseball game on the fourth of July. It’s kind of a tradition with us-see the game and watch the fireworks afterwards. Anyway, during the fireworks, the song “God Bless America” sung by the incomparable Ethel Merman was played over the PA with some amazing displays. As the song began, the man sitting in front of us stood up and took off his cap. When it became apparent that no one else was going to stand, he started to urge the crowd to follow his lead. He actually started yelling at all of us and informed us that it was our patriotic duty to stand during this song. It was very aggressive and very uncomfortable.
    Fortunately, nothing untoward happened. But this situation made me think. I don’t always stand for the national anthem. No, I’m not making a political statement, and I’m not an unpatriotic person. Quite the opposite. I know our country is great even if it’s confused at the moment. And our service men and women deserve our support and thanks for their sacrifice. No, my issue with standing is much more basic.
    I don’t stand because on that day, I can’t. It hurts too much. Or the simple act of getting up is too hard that day. I may have expended all my energy just getting to wherever I am and need to rest- my knees, my back, my hips… This isn’t every time I’m out somewhere by the way. I stand whenever I can. It’s my idea of use it or lose it. I just can’t always use it. But then I encountered the gentleman described above.
    So back to my question: Am I unpatriotic for not standing? Is my pain a justifiable reason for remaining seated or should I try harder in recognition of those who lost limbs or lives? After all, I haven’t lost either, I am just in pain, as are numerous others who fought for our country. How do I justify my infirmity as being such that I not pay respect to the country, my freedoms, and those who fought for them?

    I guess in the end, it will remain my decision on any given day if I am able to physically push myself or not. Even more, I know what’s in my heart and that is respect for all people. And showing patriotism isn’t yelling at people. It is, simply, this respect. Sitting or standing. Towards all who live in this great nation.