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    Quick recap: I have been married for 27 years, sick for 21 of them, and slowly becoming sicker AND more withdrawn about it.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


    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

        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.