Tuesday, November 21, 2017


Interpretations


   Recently, I had to refill one of my many medications. This in itself is not a big deal. This particular medication is one I have been taking for more years than I can count at this point. My disease, being Autoimmune in nature, messes with the chemistry in my brain making it very difficult to fall into a deep, restorative sleep. So years ago I was prescribed Ambien and have been taking it ever since without issue.
    Of course, everything changes at some point. And for me, Ambien became Ambien ER. I had begun waking up in the middle of the night and having trouble falling back to sleep. But the ER worked. I’ll admit here that I don’t remember if Ambien was always a controlled substance or if it’s classification changed at some point along the way.
    Whichever it was, it doesn’t matter at this point. Because it is a controlled substance now and that is the point of this story. Refilling a controlled substance and trying to understand the NYS statute controlling such things.

For starters, here is the statute from January 2017:

Section 3339.3 Unless an earlier refilling is authorized by the prescriber, no prescription for a controlled substance may be refilled earlier than seven days prior to the date the previously dispensed supply would be exhausted if used in conformity with the directions for use.

    So, the way I read this, I can pick up my prescription 7 days before I run out. For example; I filled my last prescription on October 17th. It was due to be refilled on November 16th. I attempted to refill it on November 14th. I apparently opened the gates of hell, chaos ensued, security tapes were pulled, and I ended up back at the car in tears while my husband went back into the pharmacy to hear hear the outcome of their investigation. All true!

    Now the story with a bit more detail:

    First you need to know that I have essential tremor and peripheral neuropathy. My hands shake and sometimes I can’t feel my fingers. As it turns out, in October, I did drop my pill bottle and lost 2 pills. However, beyond that, my husband works at the hospital where I get my prescriptions filled (I actually HAVE to get them filled there) and we routinely get my meds on his paydays every 4 weeks-hence every 28 days. Or 2 days early. Well within the 7 days the law states.
    Apparently not. When I asked for my medication, the pharmacist was called. When I mentioned I had none left because I had lost two, she immediately stated “I cannot give you any medication. It’s too early. We’ll have to check the security tapes to make sure our techs counted correctly if you think you were shorted.” and she left. I could only mutter “But..” to the tech and wait until she came back.
    When she did, I tried to explain again that I didn’t think they miscounted and I know I dropped the bottle. She then explained that “I can’t give you any pills because you get your medication too early too much and you can only get it the day you run out now.”
    This is a very small pharmacy with a line of people in a hospital where my husband works. I felt accused at this point and about as big as a worm. This is when I heard the INTERPRETATION of Section 3339.3. It is as follows:

Unless authorized by the prescriber, a person has a total of seven early days to use for picking up any controlled substance and once exhausted, that prescription may not be picked up early any more for the life of that prescription as written.

    What this means is, if I pick up me medication early by 3 days in October, I have only 4 days left to use. Forever. Get it? I really don’t but I have done my homework and confirmed this interpretation with other pharmacists in the area. And though it’s meant to keep certain people from stockpiling medications, it creates anxiety for those who may find it difficult to get to the pharmacy on the exact day they run out of a medication that they need.
    So for those of you who are on any controlled substances for treatments of pain, sleep, depression… Be aware of your state’s laws concerning distribution. But beyond that, be aware of your pharmacy’s interpretation of those laws as well. It may make all the difference in whether you can get your refill that day or not. It did me, and it cost me 2 days sleep. But also be aware that there may be ways to sit down and work with your doctor and pharmacy to make it easier for you to deal with these regulations as well. That’s my next step.

Wish me luck!

Thursday, August 31, 2017



Let’s Talk About...
💖💖💖

    I got married in 1990. At the time, I was in college pursuing a degree in education. I graduated in 1991 with a BA in Secondary English Education and a minor in Psychology. Afterwards, I went to work helping developmentally disabled children and adults. In 1996, I was diagnosed with the disease that would eventually become disabling.
     No amount of reading, psychology, or education could have prepared me for handling the emotions I experienced as the disease progressed. Each new symptom brought more uncertainty and more pain. After 21 years of this continual roller coaster, I had developed the unfortunate habit of not sharing how I was actually feeling day to day or what new development had arisen. I thought I was sparing my family from knowing how much pain I was in or worrying about how far the disease had really progressed.

                                                  FYI: This is not a good idea.

    Quick recap: I have been married for 27 years, sick for 21 of them, and slowly becoming sicker AND more withdrawn about it. Meanwhile, my husband has been very supportive and has been picking up the slack as I have declined. But he has also been internalizing my pain. And because I wasn’t  talking about it,  he started to make assumptions about my pain and what activities would affect me. Suddenly, we weren’t having sex.
    Yup. I said it. On live written internet. S*E*X. The damn disease affected our sex life and we didn’t even realise it at first. I’ll add a disclaimer here-Sjogren’s can cause sex to be painful, but that’s not what I am talking about. The issue, literally, is talking. Or the lack of it.
    You see, it finally took a few weeks and finally asking my husband what was going on to get to the bottom of the issue. And a big part of me didn’t want to ask at all. Seriously. I’m sick. I don’t need stress of any kind. And not that I had any reason to believe my husband was cheating, I’ve watched enough LMN to know I could be opening a huge can of worms. But up until that point, our sex life had been great, so I had to ask. And to be quite honest, his answer stunned me.
    Flashback sequence: My pain rests, for the most part, in my back, hips and knees - most likely due to spending my career sitting on the floor cross legged and recently having fractured my back twice. That, combined with the amazing amount of rainy weather we’ve been having, has caused me to be in a lot of pain this summer. Even walking has been unusually difficult. Seeing that, my husband assumed that the act of having sex would also be painful for me. He loves me and didn’t want to hurt me in any way, so he stopped making advances and instead started letting me sleep as long as I needed on the weekends. That is, until I finally decided to ask him about it.
    Now, I am happy to say, we are back on track. We had a long talk last weekend and apart from agreeing we both miss sex, we also agreed that we have to keep talking about my illness. I can’t hid it from him and he can’t be afraid of bringing it up to me. It is was it is and it will progress however it chooses. Neither of us can control that. We can only control our reactions and how we adjust to my new levels of ability.
    But I also told him that these decisions have to be mutual. And that even though I understood and appreciated his desire not to cause me any pain, the decision to stop engaging in sex was not his to make. Just like the decision to use pharmaceuticals or herbal remedies, the decisions on what my body can handle physically are mine to make. I sacrificed myself to see my kids play hockey and baseball when they were little because I wanted to be there even though I knew I might be in pain afterwards. The same concept applies now.
    I fully understand that as time passes, there’s a chance I will not be able to participate in sexual activity anymore. I sincerely hope not. But if that time comes, I know two things:

  1. My husband and I will be able to talk it through first. And
  2. He is already prepared to stay with me if I can’t have sex anymore.

Today’s lesson? Talk things out with your significant other. I wanted to shield him from my disease and is constant issues and he wanted to keep me from getting physically hurt. But we kinda hurt each other anyway. So it wasn’t worth the time and effort to begin with was it?

    Now go on y’all! Get to bed!

    

Tuesday, August 8, 2017



Five Support Group Personalities


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    For those of us who are chronically ill, one of the most common resources used today is the Support Group. Generally, this is a good thing but sometimes, support groups can become clash of personalities.


    Here are the most common Support Group personalities and how to avoid being one of them:

  1. The Debbie Downer: OK, Support Groups are designed for people who are experiencing problems. In this case-chronic illness or pain. Debbie Downers are the epitome of this. Every post is a litany of complaints and questions of will this ever end and why me? The problem with people like this is that they have nothing to offer the group. Their posts are only drains on the group mentality as they don’t even want advice or suggestions. Every comment is met with ‘I tried that’ or ‘I can’t take that because’… Debbies only want to hear ‘I’m so sorry for you’ or ‘you’re so strong to keep going through all that’. They want pats on the back. And don’t ever look to them for support or advice on anyone else’s posts. That’s not their style.
  2. The Hijacker: Do you remember as a kid playing the card game War? The high card wins? There are people in support groups who, for some reason, jump in on threads for the purpose of hijacking it all while denying that’s what they’re doing. They just mention that they too have A and B but that they also have C or that their version of A and B is so much worse. Then they’ll state that they don’t mean to shift focus (which they have obviously just done) but they want to fyi that many of the suggestions offered have not worked for them. Really? Hijackers are a subclass of Debbie Downers. They will immediately get the ‘I’m Sorrys’ and the ‘We’re here for yous’ all while denying that was the reason for their comment.
  3. The Nature Goddess: These people usually post to be helpful but do so in a very forceful way. Their opinions are handed out attached to 100lb bricks of granola laced with references to different articles they view as proof of their point. The problem with them is that they typically use aggressive wording when stating their opinions. Goddesses give the impression that the research out there on diet and natural remedies is as good as that done on drugs and pharmaceuticals in treating disease. Some Goddesses also tend to use language that would scare anyone off taking a pill by calling them poison and making blanket statements about side effects. Understandably, they are passionate about their lifestyle and about treatments that work on certain parts of chronic illness, but Goddesses are good at causing confusion in support groups by the very nature of what they present.
  4. Pill Pushers: Opposite of Nature Goddesses, but just as harsh, Pill Pushers strongly believe in medication as the only way to go to ward of flare ups and progressions of these diseases. The problem with them is the fact that Pushers tend to believe in a certain medication over all others and will go to great lengths listing all the bad things and side effects of any other medication to get their point across. To them, the concept of medications working differently for different people is inconceivable and what’s best for them isn’t necessarily best for all. The fact that the side effects they list may never have happened or that there may be people in the group who have had great success on a medication they think is bad doesn’t matter to them at all.
  5. Long Termers: (Yeah, me.) These people have been fighting these diseases so long that they have experienced almost everything they can throw at us. They have also tried so many medications, supplements, weird treatment options, exercises, and what not that they can fall into the trap of thinking they know it all. Certainly, Long Termers know more than the average bear. They have seen a lot work and have seen a lot more fail. They tend to want to make sure that the “correct knowledge” gets out there. Which is problematic in itself because “correct knowledge” is actually different for each person. So Long Termers end up taking on more people than they should by trying to correct them and telling them the right info. And people don’t always take that well.


With these five personalities found in pretty much every support group, the only way to combat them is to be aware of your own behavior and reactions. Avoid being a Debbie or Hijacker by watching the number of posts you write about your negative stuff. Yes, the group is there for us to vent and complain, but in truth, the more we offer help and support to others, the better we feel! In reality, a group that is designed to offer us something we may not have in real life is actually an alternative treatment itself! And let others have the spotlight if they started the thread. It’s their pain, their issue. We can have our turn in a different post.                                                                                                                                                                    
As for our Goddesses and Pushers, they both need to take a step back. I have seen way too many posts from both go very wrong. And I am not above admitting I have been involved in some of those because I have taken offense at some of the claims made. It has always come down to wording. There is no cure for us, only times of remission. None of us should present our path as a cure. We should also avoid fear mongering by labelling medications as poisons or as things with side effects worse than the disease.


Long Termers need to watch their words as well by withholding comments at times and also realizing there are lots of new treatments out there that weren’t available when we were diagnosed. In this situation, we don’t know it all! We all need to realize that presentation counts because no one likes a know it all! (Yeah, kinda directed at me…) We can only present what we have taken or are taking and how it has affected us. Period.


By keeping our posts divers and our language neutral, we allow everyone to stay involved and open minded. We also give them the ability to research their own choices and make their own informed decisions. And really, isn’t this what we all want anyway? Info and tips that we can all research and make our own decisions on? I know it’s what I want...

Saturday, August 5, 2017



Why I Bought An Expensive Purse

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        For those of us with chronic illnesses, it may seem obvious that pampering is a good thing. After all, being pampered makes us feel special. And with all the pain and other effects we endure from our different illnesses, that is the last thing we feel on a day to day basis. So it is a feeling we definitely need in our lives. But it goes beyond just feeling special. Pampering can actually make handling our disease easier. And by pampering, I’m sure you all think I mean massages and seaweed wraps or stuff like that. Actually, I don’t.

    I’m talking about the things we use on a daily basis just to get by.

    The first thing that comes to mind, obviously, is our medicine. We all take it (even if it’s in the form of supplements) and most of us carry it with us which creates the need for a pill carrier. So a long time ago, I decided I wanted a really cool pill carrier, since I had to have it with me 24/7 anyway right? I ended up going to several antique shops finally found the most unique sterling case I’d ever seen. Now if I have to medicate in public, I usually get compliments on that pill case instead of stares.
    And along with medication, of course, we all need water! Look at your water bottle or even the glass you use for water at home. I know that having to take medicine every day is not only redundant and frustrating, but also a constant reminder of all that is broken inside of us. So go find the fanciest glass, goblet, or stein you can and designate that as your official med-mug! No one else is allowed to use it and it will make taking your medicine (slightly) festive. OK, maybe not. But you can at least look forward to pulling out that beautiful glass you picked out.
    Many of us also have to utilize what’s called ‘adaptive equipment’. I know many people with Sjogren’s Syndrome are light sensitive and need to wear sunglasses daily. With so many choices of sunglasses on the market, it’s easy to fall into the trap of getting a cheap, “workable” pair. But why not go for an awesome pair that you absolutely love and feel gorgeous in? Instead of stressing the fact that you are light sensitive, stress YOU! Your personality, your style, your love of cats! (or something…)
    And speaking of style and personality, use that same philosophy on your cane if you need one. Why use the plain, metal, adjustable ones? Most medical supply store stock canes in colors and patterns now, but if you can’t find one-get creative. They can be painted, glittered, or wrapped in ribbon. Better yet, check online. I custom ordered mine due to my height. It’s made out of diamond willow tree wood and again, I get a lot of compliments on it. The beauty of the cane  takes the focus off the fact that I need it. And yes, I fully admit that when I ordered it, I was not yet ready to accept that I needed to use a cane. But having that piece of art at my side actually made me willing to use it.
    Lastly, I tell you the story of my purse. (Or purses.) I’m a purse-a-holic. A purse snob. I only buy good, leather purses. At least I thought they were good leather purses. Turns out they couldn’t handle the multitude of stuff I needed to carry with me after I got sick. I became a purse killer. Until I decided to buy the purse I have now. It’s expensive. But it is thick and put together really well with grommets and metal instead of sewing. It has a strap that is thick and long and also held at places that are grommeted in place. It is truly waterproofed. But more importantly, I love the style of it. I love carrying it. It is pretty and makes me feel good. And that actually makes me forget what’s in it.
    So, my chronically ill sisters and brothers, I will leave you with these ideas for consideration. I get that being chronically ill is mentally and emotionally draining and the last thing you want to think about is how you look in sunglasses. I also get the fact that these diseases drain money like we’re throwing it from the rooftops. But if everything around us is simply functional or assistive, aren’t we turning our lives into extensions of the disease rather than the disease being only a part of our larger lives? If our clothes, shoes, totes, jackets, creams, and lotions are all purchased strictly for our disease they will always remind us of the disease. Sure, sometimes we won’t have a choice of products or styles, but whenever there is a choice, I say splurge. Pamper. Run as far away from the parameters of your illness as you can and be YOU.

Otherwise, the disease becomes you and you become the disease.

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…

WE NEED TOM HANKS!!

Sharilynn Battaglia

Friday, July 21, 2017

Wonder Woman or Mr. Glass


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    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.
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(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


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    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


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     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.