Chronic Illness

Wender Woman Protects Against Migraines!

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‘Wender Woman’ challenges headaches to stand back!

Get it? ‘Wender Woman’, because of the cool, metallic Wonder Woman headband and my name is Wendy? It is cooler when I don’t have to explain it. But, it’s still cool.

If you had a headache everyday, most of them migraines, you would do anything to arrest them. I have and will. If you have a migraine monkey on your back, I need not explain to you how a headache pain ends your day. For those of you without a migraine monkey, but still are curious, let me try to describe the impact of chronic headaches and/or migraines: Imagine the members of the crew of  Star Trek is seized by a high pitch sound that makes them press their hands against the sides of their heads, stumbling around, and grow weaker until they collapse into death poses on the floor. It is kinda like that- only worse.

In case you are wondering why I look especially tire, part of my headache prevention is done at night. Also, I am staying up late to write this post for you. Now you have an idea of why I really don’t care that I don’t have a flattering picture of Wender Woman on the post. I am dealing with chronic illness people, not advertising for a superhero movie!

What is the deal with the headband? It is one of many tools used to prevent and treat migraines. In Canada, you can buy them without a prescription because it is not a controlled substance. This device was prescribed to me by a neurologist at Mayo Clinic in Rochester, Minnesota. But, I would think any doctor or physician assistant could fax an order for one. I ordered mine from Canada, but still needed a prescription from the United States. Insurance companies do not cover the cost. It is FDA approved. The band is obviously not a food or a drug, so of course I don’t understand why the FDA would have any deal with it. There are no side effects that I have been able to notice; except being able to be able to think, be more active, be more healthy and be waaay less grumpy.

I have yet to access the superhuman benefits. Perhaps it’s because the headband isn’t even metal. If I was trying to get paid or reimbursed for ‘promoting’ the product, they would be asking for their money back right now. I am proud to admit that a salesperson I am not. I am in no way being compensated for this post. I don’t care. I just hope that it may help someone be able to live better.

This product is called a Cefaly. There is a sticky pad with an electrode that adheres to the forehead.

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The headband connects to the electrode. The headband is there to house the batteries and send signals to the electrode. The electrode sends impulses to nerves in the forehead. I am pretty sure that’s how Wonder Woman’s headband works too.

The electrical impulses sent to the nerves in the forehead somehow talk to the pain stimulators  at the base of the skull, inside the skull, inside the brain. The nerves tell the pain stimulators to hang back there and chill and don’t worry about what’s going on up front, because it’s under control. Don’t quote me on that. My doctor explained it in medical terms with detail that absolutely made more sense.

At first, I was assuming the identity of Wender Woman at night solely as a headache prophylactic (preventative) treatment. Between a very expensive Botox treatment every three months and the Cefaly device, my headaches are down to five or less per month. I used to have a headache every single day, with two-thirds or more of them escalating up to a migraine headache. Now, I am down to five or less headache days per month. When I do get a headache, if I catch it soon enough, I can usually knock it down by either using the Cefaly for twenty minutes, taking Sumatriptan or combining both the Sumatriptan and Cefaly.

The Cefaly is part of my balanced bedtime hygiene routine. I wind down in a dim lit room and chill for an hour with a book or my husband, aka ‘Wonder Man’; make sure my forehead is clean and dry, do my bedtime routine and apply the Cefaly. It took a little getting used to the strange sensations of the electrical impulses, but now I wouldn’t mind using it for fun during the day just to regenerate my superpowers. It is so relaxing. The late night routine is so relaxing that I  have to conjure up the self-discipline to stay awake until the end of the Cefaly cycle.

The sticky electrode pad can be reused for about three to four weeks. The electrodes are sold separately from the unit. When I bought mine, the Cefaly unit was a headband like you see in the above picture. It fits my baby-sized head very well.

My head is slightly bigger than my cat’s…

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My husband tried it out. He has a big, beautifully round forehead, but we couldn’t get it to even power up for him. The headband wouldn’t connect with the electrode on his horse-sized head. Cefaly now only makes the units without the arms along the side, which is great for pretty much anyone, even those with a baby-sized head.

I will keep my plastic headband, thank you very much! If I could find some magnetic bracelets that are supposed to be good for body pain, I might try them out. But, they would have to look like Wonder Woman’s wrist cuffs. Wender Woman is gaining strength one minute at a time. One year at a time. Life, it’s chronic.

Chronic Illness

Temporarily Chronic: Breast Cancer

7A7094D3-0A29-40F7-8853-6D318B1BF7B2.jpegThis photo is from about six months ago. So, I haven’t blogged about my experience with breast cancer, because I hope for it to be a temporary problem, not a chronic one. But, as I say, life IS chronic.

It has been thirteen months since I started treatment. I have to humbly say that I have been the epitome of grace under this pressure. At least I think so. I think people were possibly more concerned about me being so jolly about the treatment than they were about the cancer, although no one has told me that. If I were my friends and family, I would think that either I was being a very good actress with a professional performance or else I was going out of my mind! I mean, who glows in excitement about how great the cancer treatment process is?

Who enters cancer treatment being all smiley and like “Yay!” Well, let us see… I do! I do because I couldn’t be more relieved than to have the chance to save my life and to have the consciousness to watch it all happen. I was walking around with breast cancer and I did not own it. I did not plan on keeping it, so why own it? It did not tie me down, much less knock me down. I mean, I could get out of bed every day and be ever more grateful for another day and hopeful for tomorrow. What a gift.

People are very kind to cancer patients. Duh, right?! Well, I have had my series of chronic health problems and problems like so many of us, but I seriously have never been treated better by so many people that I know and even more people that I don’t know. How comforting is that! It is everything that makes life worth living for. Kindness.

I will come back again and write more about this chronic part of my life.  “Live it!”, says Wendy!

Life, it’s chronic.

 

Chronic Illness, Chronic Pain

K.I.S.S.- Keep It Simple Silly!

Why keep it simple?Because more is too much.

Let’s aspire to K.I.S.S.

Stress kills the body and the soul. In the U. S. of America, ‘more’ is cool. Half an hour drive away from my home is the city of Arcadia. It’s slogan is “Arcadia is ‘More.”: More? More what? It must not matter, as long as it is more. Every commercial… more, more, more. More stress is more like it. More stuff, more social connections, more activities, more money, more education, more candy, more wine, more work, more responsibilities, more sleepless nights. Being overly busy is complicating our lives and stressing us. This culture I grew up in, of material composition and social standing had lured me into making my life complicated. I have done that. I have learned to partake in activities that bore me. I have learned to commit to small talk and pretend to find humor in topics that don’t seem either sensitive or well thought out. I have contributed by volunteering in activities that require shy people like me to be very uncomfortable. People like me get lonely in a room full of people. It is draining. “Keep it Simple Silly” is again my goal for 2018, to live according to my nature in order to live outside the world of stress and hurried frenzy. Trying to deny our vulnerabilities as humans is stressing. I push through pain of fibromyalgia and it produces longer, more intense pain. I push through chronic fatigue and it knocks me down even harder. ‘More’ produces more stress. Less is less stress. Keep it simple silly!

Let’s aspire to K.I.S.S.

When I was little, there was a man who lived out in the country down the road from my grandparents. I never did see him. His grass grew long.  If someone actually lived in his house, I had not ever witnessed anyone come or go. Family told me that he was a hermit. I was young and didn’t understand what kind of creature a hermit is. I imagined that a hermit must look like an ogre. That hermits were homicidal. The word ‘hermit’, I learned, was an accusation and an insult. Only scary, creepy people are hermits. Yet, he had a name. He was a person. I wondered why someone didn’t just go see him. I wondered why the neighbor was hiding. Through the eyes of a child and the wisdom of adults, I concluded that he must have been forced to be a shut-in. I imagined he had no life, no possessions, no lawn mower. I assumed that he must be empty. How lonely, I imagined. Never would I want to be that much alone, to sit in a house and stare at a wall all day. That would never be me. I would change the world. I would be free. I would blend in. What would that even look like? Fear of rejection makes us put on certain social masks. I had to learn the tricks and habits of social interactions that I found disingenuous. It was something I assumed that I would have to learn in order to lose the feeling of being looked down upon. Fear drives us to make our lives more complicated. It took way too much energy to keep hiding behind social masks. Worried about blending in and being accepted? Keep it simple silly! Simply share your kindness. It is not more complicated than that.

Let’s aspire to K.I.S.S.

I didn’t possess the secret necessary to blend in; or the shoes. I didn’t have the shoes. I was allowed the gift of very practical, comfy “old lady shoes”. I wanted flats like everyone else. The kind that your feet would freeze in should you live in Wisconsin. It is just what every teenager can use in order to help form an identity and feeling of belonging to the peer group. The pants. The jeans were too short and too wide. I used binder twine as a belt. Yes, a skinny girl with the body of a young boy. Only a few shirts, a few sweaters; rotating them strategically in hopes that no one would notice or judge. But, I really did not need more. I just wanted ‘more’. But, like my mom always said, “School isn’t a fashion show”. I didn’t want to believe her, because when I got there everyday I would see the trendy sweaters and skirts and shoes and hairstyles How pleased people were with these things and how they commented on others’ appearances. It looked like a fashion show to me, but school wasn’t a fashion show for me. It was a place to learn and a place to be able to participate in track and cross country. I fit in. All I had to do is run. Besides that, school was a place where I had the one friend I could tell about my crushes, but not about my insecurities; because I was weird, not weird in a bad way, just weird in a hermit way, like the guy without a lawn mower. Kind girls let me sit silently at the lunch table and just listen as they carried on with conversation. Get me in a group of people outside of home, and I would maybe talk to one person. There is a lot to be learned when you are the silent type. Nobody knows what you’re thinking and nobody finds out that you don’t own a proverbial lawn mower. If I put my thoughts out there, I would have to explain myself. Justify myself. My simplicity would be exposed. I would not fit in with ‘more’ people. Keeping thoughts to myself, things seemed simpler that way. Without the differences being pointed out, I wouldn’t need more. The shame would be avoided. I could still be myself. I didn’t need to chase after more.

Let’s aspire to K.I.S.S.

Do you have a disorder? Aspiring to be more is requiring people to see their social differences as disorders. It is standard to conform to the expectation that if we are different than the social norm, then we must admit it as a disorder. We can not simply have struggles. Struggles are only for the disordered. If you want to be considered as having an acceptable difference, you must advertise it as a disorder. Others may be uncomfortable that I think too much, or I am too socially anxious, or too sensitive, or too shaky or too introverted or too chronically ill. Yes, apparently it is becoming necessary to have a disorder in order to explain away your struggles. Nobody really has a disorder. It’s a scam for you to feel just inadequate enough that you will be more likely to conform. Let’s keep it simple.  Struggling is simply necessary, but being ashamed of struggling is not a necessary stress.

Let’s aspire to K.I.S.S.

The ‘real’ world does not have to revolve around jobs and being friends with everyone. It does not have to involve making connections in order to manipulate ways of getting more stuff or more relationships or make status. You already have more ‘stuff’ and interesting experiences to talk about. I already have influence. It seems like saving the ‘real’ world would mean that I would have to be more; more connected with more stuff. There was a time when I went to work and I couldn’t park my car on the street side of the business, because it was an embarrassment to the company. It took me awhile to make the connection that the business needed a more professional image. Professional meant powerful, more influential, more important. Professional meant the art of social persuasion, small talk and most importantly, stuff. More stuff. More conflict. Less simplicity. More stress. I like to think that when I questioned why I had to move my car, it gave pause to my boss on how he was pretending to be someone he wasn’t so that he could have more. By the way, that boss ended up closing the business and starting up a business where employees can park their cars and it doesn’t matter what they look like. Good for him! He simplified his life with his wife and child.

Let’s aspire to K.I.SS.

Fast forward to today. I am college educated with a nuclear family, a mortgage, a debt and dependable vehicles. Vehicles, not vehicle. We have a new house, professional clothing, four cats, a flat screen t.v. and electronics I don’t know how to use. Being chronically ill, my days are not predictable enough for a full-time job. Unwarranted guilt adds to my stress. Volunteering fulfilled some of that void. Volunteering has me doing more stuff. Keeping the balance between home, self and community even more complicated. My husband makes the money for the medical bills, for the kids’ activities, for our children’s college, for the stuff. More work, less simplicity. More doing, less being.

Let’s aspire to K.I.S.S.

Do we all not know how ridiculous and self-sacrificing it is to do more? Should we be saying, “Keep it Simple Silly?” It can be simple. You may not seem as successful or social or cool, but you may be able to live with your true self without guilt, without sleepless nights. It can be simple again. Get rid of the crap and keep it simple. Save yourself if you want to save the world. Put on that oxygen mask and breathe. Be what you love. Love what you are, not what you have. Keeping it simple will clear away the smog that keeps you from seeing the beauty and simplicity of life.

Let’s aspire to K.I.S.S.

Having more and doing more is chronic. Simplicity breeds clarity and perspective. Simplicity is inspiring the way that the “Life is Chronic” blog will be set up. It will feature blogs that were written when I make it a priority, not to meet a quota. It will be written to reach those who stumble upon it and like it. It will sometimes be written when I am sharp and also when I am not so sharp. It will not use shocking or mentally manipulating titles to snag people into reading it. That may seem contrary to the typical money-raising goal of reaching more people and getting more advertisements so that more money goes around, keeping it simple and genuine. It inspires me to draw pictures for you, instead of searching through quantities of photos, searching for the perfect one. The artwork on this post is brought to you by me. It is brought to you with patience and intent, the intent to show you that this blog is just about the most broad topic ever to be considered a niche: life. Get rid of the shit and keep it simple. Save yourself. It’s your life.

Let’s aspire to K.I.S.S.

Let’s Keep It Simple Silly! Let’s get rid of the material stuff that distracts us. Let’s get rid of the mentality that we have to do more. Maybe you already do that. I applaud you. It has been over a month since my last blog entry. Partly because I was distracted by breast cancer treatment, fibromyalgia and chronic fatigue syndrome, but partly because I am distracted by the stuff available on social media. I recently have been sucked into Smule. It is a karaoke app and it is a great way to have fun. Keep it simple, though or you’ll find yourself sucked into caring how many invites you get and feel compelled to sing more songs simply because you were ‘invited’ to do so! It is now time for me to enjoy the simple process of drawing a picture. For the benefit of me and you. K.I.S.S. my friends! Life is chronic.

Blogging, Chronic Illness

Get Over It…

B13471C3-4A5B-407F-9B7B-02293456D888Is your blog perfect? It is not and never will be. That is normal. Whatever normal is… This is a “You get what you get and you don’t throw a fit” blog.

When do you write in your blog? Is it when you are feeling your best? That was my plan. My first blog written for “Life is Chronic” was perfect; meaning that it represented  how I want my blog to go. It was titled, “Before Robots Took Over…” It is not about cats. It is about connecting with each other.

My intent was to always write my blogs in a very professional manner, to succeed in reaching you with my best writing. Because life is chronic, that is totally unreasonable,  not attainable. Do you want to be perfect in an imperfect world? Get over it.

So, sometimes there will be professional articles and sometimes there will be quirky articles. Other times, you get what you get and you don’t throw a fit. Things aren’t perfect. Get over it.

When do you write in your blog? Do you write only when you are feeling your best? When you are struggling? What do you write in your blog? Do you write about the big picture of life? Is it strictly targeted to approach common ailments among us?

This blog may suck by some standards, but given that I am layed up in bed, admitting to my pain, it is pretty darn good.

I am sick. Get over it. BUT, check out my next blog, because I will make a comeback and you may not even recognize me!

 

Chronic Illness

Of Course You Do…

Do you get pain when you do too much? Of Course You Do.

Do you get pain when you do too little? Of Course You Do.

Do you sometimes see a stranger when you look in the mirror? Of Course You Do.

Do you sometimes want help, but you don’t want to ask? Of Course You Do.

Do you have moments when you get so distracted by happiness that you forget your pain? Do you get extra pain as a consequence of having a good time? Of Course You Do.

Do you know that you are so much stronger than you feel? Of Course You Do.

Do you know that you are not alone? Of Course You Do.

Do you ever feel so small that you could fit in a suitcase? Of Course You Do.

Do you know that at the core, you have not changed? Of Course You Do.

Do you ever look up in awe and think, “Wow, I am a part of all this!” Of Course You Do.

Chronic Illness

Since Robots Have Taken Over…

Before computers and robots took over the world, I was a teenager. I thought I knew it all, of course. But then, in high school I was introduced to a ‘computer’. I scoffed at the box of boring hardware. We were assigned the task of getting the computer to do a simple task. My teacher said computers were the future. Really?  I thought computers were a waste of time and I tried to avoid them. (Now as I am subdued into a pain flare-up, I am glad that it lets me be with you and not feeling so alienated and alone.) The computers, a.k.a. robots, definitely did not appeal to my intellectual side, creative side, my rational side or my crazy side. None of my sides. I am a such a square, so it didn’t appeal to any of my angles, either. Get it? Sides, square, angles? That’s a lame joke no matter which angle you look at it from. (Really, Wendy?)

With my creative side, I utilized a degree in commercial art. It didn’t look to be a big money making career, but at least something where I could say I was doing what I liked. Creativity was my niche.  Then robots erased my niche a couple of years later with clip art and editing software. The future came quickly. Unprepared for a world of computer domination, there was no escape from them. I would certainly die of stupidity regardless of whether I attempted to survive in the technology web or went wild and off the grid. The robots distract us from our hatred for their power by making us giddy with addiction. Getting us under their spell. Sneaky bastards. Getting us high and distracted with pretty, colored screens and getting us to feel the power of pressing the ‘like’ buttons. Facebook posts suggesting we are genius if we can get 10/10 on their quizzy thing. YouTube with all the cat videos. I love them. Snapchatting to your own teenage daughter a filter of you wearing a flower crown. So much fun! Being able to get a message to your son anytime, anywhere. I love that. Emojis. Oh, I can barely trust someone that doesn’t use emojis. Where was I going with this?

Before everything was a robot, I would have been reaching out to you with a handwritten letter, apologizing for my sloppy writing, slobbering on the stamp and envelope and sending it on its way to you. Just for you. Because I cared that much. You would feel the love as you tore open the letter by the side of your mailbox, and I would feel the same days (weeks?) later when you wrote back to me. Until then, I would anticipate the day, letting my mind wander as I did so. But, now my mind doesn’t wander as creatively as it used to.  It flashes on and off. I forget from one moment to another. The computers must surely be sucking up my attention span, trying to make me assimilate to a robotic world. Or, maybe that’s ‘just’ part of the brain fog that comes with constant fatigue and pain. I am now a dumbed-down version of myself. So much of my energy is spent coping with pain and its limitations that my processing speed and recall is painfully compromised. I used to be quick and have a great attention to detail. My dreams of teaching middle school students was crushed. No matter how much denial I lived in, the pain was real. The fatigue was real. My dreams were not to be fulfilled.

Before our communication was mediated by the web of world-wide robots, I was ‘only’ chronically ill with what is called bipolar disorder. Living in a state of illness provides for way too much social isolation, even for an introvert. I knew that I was weird. I did not know that there were coping skills for it. The internet became an open door for self help and self affirmation.  And, that is where I discovered that everyone is ill. Truly. I am ok with that. Everyone seems to need some kind of self-help with some part of their life. I fit in! I became more comfortable in face-to-face contact with what I used to think were normal people. Bam! Then, I mysteriously started feeling sore all over and became exhausted ever so easily. Socializing in person became more difficult again. Pushing myself to keep up with social activities only fed into the spike of pain and fatigue for days to follow, keeping me from doing the things I loved with my husband and children.

The harder I tried, the worse it got, contrary to my will. Pain and fatigue upped me every time. The diagnosis? Fibromyalgia and Chronic Fatigue Syndrome. I started to catch on to the fact that my daily life was battling with my daily life. Grrrr! My body hated me and I needed it to stop. After years of rifling through the internet to figure out a way I could side-step fibromyalgia and chronic fatigue syndrome, I decided to call off the search for a cure. The internet robot could not save me.  Some consolation to me as I dragged myself around the house, wincing and breathing carefully is that I had survived this long; normal or not.

Before social media became the norm, I didn’t think normal people would share their lives with me. Why would they? How could they? I am not able to commit to making plans, much less following through with them. My husband and kids get the best of me; which, to my standards is not as good as I had planned on. Plans with them are almost just as unsure as plans with anyone else. Will I be hanging back to recover from a flare up? Or, maybe in bed sleeping? Shuffling around the house in pain, would I be able to enjoy our time together when I felt like I just got run over by a truck? I don’t remember what normal feels like, but this is what normal has looked like for my kids since my daughter was six years old and my son was two years old.

My kids have grown up with social robots like Facebook and Twitter, as well as all of those other ones that are too hip for me. I don’t understand why there have to be so many kinds of social media, but I know that kids don’t find Facebook cool anymore. It is mostly reserved for middle-aged moms like me. Keeping in touch, so to speak, with familiar people has boosted my confidence in that I don’t have to be so isolated. Facebook has been good for ill introverts like myself. Since entering Facebook, I have shared my thoughts and views with people that I really, truly hadn’t even know that well. Feelers go out with posts that are meant to inform or inspire. If there is interest, it sparks me to put myself and my good intentions out there even more.

Facebook has become a place where I let some of my life be deposited. It’s not all pretty. Still, I am too ashamed to let on what my pain is like.  I am willing to share the less chronic issues on Facebook. In January of this year, 2017, I was diagnosed with breast cancer and have been going through treatment ever since.  Some updates of my treatments were dropped on my page, and that’s when I realized that Facebook has become a forum to scroll through, not a social forum to incite personal discussions. But, hey! I do so look forward to stalking to see what broad fields of interest my friends subscribe to. There are a lot of cat people. I don’t mean people that are cats, I mean people that find felines more than compelling. Technology has certainly found a friend in cats. There are never too many cats. I am alright with that.

Moving forward in the quest to connect …. blogging it is! Yesterday, I seriously didn’t know exactly what blogs are. Today, I still don’t get it. I thought they were all just people’s lists of what they did that day. How long have I been enticed by Pinterest links, not realizing that they were often blogs! (Am I right?) I like to think that the less I know about computers, the happier I will be. As it turns out, denying that the robots run my world is just sad. I have to admit that computers are helping to keep me sane. It feels like illness puts up walls that keep me away from being myself. I may be ill every day, but I have something to give. I need to give it. Robots help keep me from feeling like a total burden on society. Deep inside, I am the person I have always been. I need to be that person.

When I was a teenager, I thought I knew it all and would have control over my own life. It turns out that I don’t have the control I thought I’d have. It turns out that teenagers don’t know it all. But, they do know how to set up a blog. They tell me that it’s easy, that I can do it myself. They make it look so easy… They know how to control the robots. I stubbornly don’t ask the kids’ help with setting up this blog. I won’t give up. How am I going to even get this first blog entry entered? The robot laughs at me. My cat walks across the keyboard and does things that I need to have a teenager undo. It’s a chronic problem. Life, is chronic. Come join me.

Chronic life and chronic illness can get lonely. Do leave a comment! You may call me Wendy or Wendylynn or any term of endearment. I look forward to hearing from you, no saliva required!