Archive for the ‘Uncategorized’ Category

My Life, Such As it Is

Posted: October 4, 2015 in Uncategorized

I know I don’t talk about what it is like living with Lupus very much. I hate to sound like I am complaining. I don’t like people to see my weaknesses. It’s a ridiculous way to be, but that’s my life, such as it is. But then sometimes I think about how not many people really know anything about Lupus and how sometimes even the best intentioned people can cause me pain because they don’t understand what I am going through, because I don’t let them really see. So I want to maybe try to help people understand what it is like. I want to kind of explain what my day to day is like and maybe help some people know just how much it differs from the “norm”.

First off, I am very lucky. I have a lot of wonderful, caring, compassionate people in my life who try hard to be there for me and understand. A lot of people in my situation don’t. I am lucky in that from the time my symptoms began, from the time I started having pain that wouldn’t stop and I decided it might be time to go to the doctor and see if there was really something wrong, it only took 3 years for a diagnosis. It can take a lot longer than that. Lupus is hard to diagnose. I am lucky in that I have a rheumatologist who listens to me and takes me seriously and is actually generally more concerned with my health than I am. I argue with her to get her to lower my prednisone amounts because I am human, and as a human, I can be vain, and I hate what it does to my body. I hate that I gained 45 pounds that I can’t get rid of because I am still on prednisone. Even though that awful little steroid is what helps me get through my days at all. So she won’t let me go any lower until my blood test levels are better. She asks me if my painkillers are still working instead of looking at me like I’m a junkie the way I hear it is for some people. She yells at me for doing too much because she knows it causes my symptoms to be worse. I am lucky in that I take control of my health care and won’t stay with a doctor who doesn’t seem to listen to me or care. It took me 3 tries to find this rheumatologist, and even then, it took me a few appointments before I lost my wariness and started to believe she had my best interests in mind. I am lucky in that I am a fairly optimistic person who finds it easier to joke about things and give my disorders silly names to help me not take it all too seriously.  I am lucky I have a husband who helps me and I am lucky we have health care so I can even get treated, even if the bills still pile up from what the insurance doesn’t cover, and the copays and the 10 prescriptions a month for me alone. I can’t even imagine what it would be like to have to try to deal with Lupus, and Hypothyroidism and Fibromyalga and Chronic Migraines and Reynaud’s without it. These are all things I have been diagnosed with. And I see a my family doctor for some, a neurologist for others and a rheumatologist for the rest. Specialists ain’t cheap. I am lucky that as of now, the Lupus hasn’t moved on to attacking my organs and sticks with attacking my muscles and joints. I am lucky my meds are helping keep everything in a semblance of control so I can have a life at all. I am lucky. Very, very lucky.

But I am also a person. And even though I know there are those worse off than I am, that doesn’t change the fact that I can’t help but let it get to me. I deal with depression and anxiety. They tend to go hand in hand with chronic illnesses. I take meds to keep that in control too so I don’t let my own mind destroy me. I will continue to take these meds. No amount of essential oils or exercise (even if I was able to exercise in the traditional sense, which I am not) or healing crystals or diet changes are going to miraculously heal me. My meds keep me from dying and keep me living in a way that is worth living. But antidepressants aren’t happy pills. they don’t make me happy, they just keep me from letting my mind destroy my life. I still get depressed. I still have anxiety. I still sometimes feel sorry for myself and I still sometimes have a very bleak outlook on life. This isn’t the norm though. I can’t let it be, but I also can’t help that it is there sometimes. It will usually hit me when I have to miss something I really want to do, or suffer in pain for days after doing something I shouldn’t or pushing myself too far.

Yesterday, I went to a party. I couldn’t stand missing another family event and I wanted my kids to see their cousins and play and have fun. I took enough painkillers to get through the party and I even had fun. I knew it wasn’t the best idea. My weekends are the worst days of the week. After a week of doing everything around the house and taking care of kids, when the weekend rolls around and I know my husband will be home for 2 whole days to help me, my body lets the week catch up to me. So yeah, I knew going out that I would pay for it, but sometimes I make bad decisions for my health for the well being of my mind. So even though I knew going into it that I would pay for it, it doesn’t change the fact that I am still feeling a bit sorry for myself and I am still pissed off that I have to deal with this shit. I got home from the party and my body gave up. Every step I took was agony. There was no comfortable position to sit in. No way to feel better. Just the haze of pain. I was exhausted. Bone weary. Fatigued. I could not move with out pain and feeling like I was going to collapse from the exhaustion. But I couldn’t sleep with the pain. I was hungry but too nauseated and tired to eat. I took meds so I could get some sort of sleep. I woke up feeling worse. If I had to do this alone, if I had to try to get through a day like today without my husband to help me with the day to day and the kids, I would probably break down. I’ve done it before on really bad days when he is at work. It sucks. Everything about today sucks. And it makes me very angry that I can’t go enjoy an afternoon with my family without needing at least a day to recover. I am going to an indoor waterpark in a couple of weeks. I know how bad that is going to be on my body. I know that it is most likely going to take me 2-3 days to recover from that. I’m still going to go. And I am still going to get upset and depressed and cry and get angry when I can’t move for a couple days after. I think that maybe it will be easier the longer I deal with it. Right now, everything I was able to do just a couple years ago is still fresh in my mind. I still lament the loss or my previous normal. I still remember what it was like to not have pain every day of my life with the only variance being the level of pain and where the pain is. I remember what it was like to “just be groggy” sometimes and be energetic sometimes instead of this constant fatigue and exhaustion. I remember what it was like to just go do something on the spur of the moment just because I wanted to and I remember what it was like to say no to things because I didn’t want to go instead of couldn’t go.  Maybe as that becomes a distant memory and as I get used to my new normal, I will deal better. I don’t know. I sure hope so anyway. And in a day or 2, when I am back to my new normal, I will go back to my positive outlook on life and my hope and my gratitude for what I do have.

In a lot of ways, Lupus has helped me. I am a lot less judgmental than I used to be.  I don’t know what anyone else is going through in their lives. I have no right to judge anyone else. I have always told my kids that it is our differences that make this world so great. That everyone is weird in some way and that’s really cool and just because I may think something someone wears or does is strange, that doesn’t make it wrong or bad. As long as they aren’t hurting anyone, then continue to be awesome and different and embrace the weirdness of our world. I always tried to be non-judgmental, it just comes a bit easier to me now. I am a more positive person and I let things bother me a lot less. Holding on to anger or sadness or hurt is a waste of my time. I don’t have the energy for it. I still get that way, I just don’t let it stay around and fester as much as I used to. I enjoy things more. My time with my kids and my husband are more precious to me. Playing board games or video games together, snuggling on the couch, watching a movie, having a conversation, being silly, hearing about their day, I pay attention to it more. I know what this disease can do to me. I know how bad it can get. I know my muscles can degrade a lot more. I know my organs can shut down. I know it can kill me. So instead of worrying about what I can’t control, I try hard to really be present and enjoy my day to day life with my family. They mean the world to me. They keep me going and keep me from letting this eat away at me (figuratively anyway). They keep me grounded. They keep me at peace. Their love for me and my love for them makes me happy, and sometimes it can wipe away the bad thoughts and feelings and make me really appreciate what I have. Some people have to go through this alone. I don’t. And I am very lucky for that. And I love my life. I may hate Lupus and everything else wrong with me, but my life? I love it. Such as it is.


Some nights I dream vivid dreams, the kind that wake me up, breath caught in my throat, eyes wide in fear and a cold sweat on my body. These dreams, or nightmares, are obvious stories. My subconscious had something locked away that it needed to release. I take those and I write them down, storing them away for future use in a nightmarish story, or twist them and turn them for use as a scene in a current story. Other nights I have dreams that keep me sleeping, the ones where a story is unfolding in my mind as I sleep and I watch it all from the sidelines, watching the characters in my mind as if in a play. Those dreams are always over too fast, morning comes too soon, and I lay in bed trying for a few more moments of sleep and a continuation of the story started. These are the ones that inspire me the most. These are the ones that must be written, must become a story, and when these two kinds of dreams interact in one night, it is like an inspiration jackpot. I don’t always write when inspired, some days it’s a struggle to wade through the muck of a manuscript, but I push along anyway, hoping that as I go inspiration will hit, or at the very least my ideas don’t suck. But when inspiration does hit, I am raring to go, ready to write and create a new world with characters I already know intimately from my dreams.
Last night was one of those dreams. The dream combined faeries and demons in the realm of humans blissfully living their lives in ignorance. The main story followed a particularly tough, punkish faerie and a lackluster demon desperately trying to regain some influence over humans. There was a tenuous agreement made, a bargain that is doomed to fail and some amusing dialogue between two selfish, clueless beings and their cohorts that resulted in a much bigger story to come. It is a combination of realms that I don’t think I have ever read (and if you have, please don’t tell me), and I feel a connection to these characters, I really like these characters, even when they were being decidedly unlikable. I liked the story I watched unfold and I wanted more. I knew that this one must be told, and so today, I am setting aside other writings for a while and focusing on this story and seeing where it takes me, this tale of faeries and demons and other nefarious beings.

The Death of a Symbol

Posted: May 3, 2011 in Uncategorized

In the last day and a half, I have watched Americans react to the news of Osama Bin Laden’s death. What I see all over the social media platforms, like Twitter and Facebook, is a division between the people as they try to decide what it means to them. There are a lot of political views being thrown around, misunderstanding, joy, hate, confusion, disbelief, etc. etc. I am not interested in sharing my political views on the matter or judging the government for how it was done and the decisions they made. Overall, I try to keep politics out of my blog, so please realize that I am not in any way making a political statement here, this is a statement about what I see going on with the people of this country and not the government of this country. My reason for this post is to hopefully shed some light on this for those that are disgusted with the reactions of Americans for celebrating the death of a man. You see, Osama was not a man in the eyes of America. He was a symbol. A symbol of hate, of terrorism. A symbol of fear. He was trope of evil if you will. This is how he was viewed by America. While he was alive, this symbol lived. Dead, there is a lightening of the fear he inspired. Some of the reactions are poorly phrased, or show hate right back, but overall, there is a sense of relief that this evil is gone from the world. The “good guys” prevailed. Look around you. Look to the books on your shelf, the action movies you watch or the comics you read. There is always good triumphing over evil. This is what we as people want to believe in; we want to think that good will always triumph and evil will always fail. Overall, yes the network of terrorists is still there, they still harbor hate for America, and they may make Osama into a martyr, but they don’t need that reason to continue to hate the people of America. They will or they won’t. Do you think that if we had been able to capture Bin Laden and put him on trial, that the terrorists would stop? That they would see justice and realize that America is right? Of course not. So while they may make him into a martyr and use his death to fuel their passion for hate, we have the ability to use his death to fuel our passions as well. Our passion for justice or peace, our passion to believe in freedom, our passion to understand the attacks that took so many lives. Try to understand the views of your fellow Americans. Try to understand where they are coming from and why they are celebrating. A symbol has died and we can take what we will from the loss of that symbol. We can use this to our advantage to come together as Americans, or we can use it to increase the divisions between the people. I can hope that we will take what we will from it and move on together, that we will move on as a stronger nation seeking true freedom for all, including ourselves. That we will try to foster understanding and try to see both sides of an argument in order to come to agreement. Heck, I hope that one day there will be peace on earth and a social revolution for the betterment of mankind. But then, I have always been an optimistic pessimist. I may expect the worst, but I always have hope for better and will do what is in my power to work for that goal. What will you do? What will you take from this? Will you see it as an opportunity for more discord, or party-line division, or will you see an opportunity for closure, for moving forward and making a new beginning? What symbol will you use to replace the one Bin Laden represented?

Return of the Dapper Men

By: Jim McCann

Artwork by: Janet Lee

Published by Archaia 2010

Envision the world the way you did when you were eight. Picture the sights, the sounds, the smells. Remember school and parents and bedtime. Think of scary stories read by flashlight under the covers and remember dreams; dreams of tomorrow, of what will be, of hopes and fantasies. Now transport your eight year old self to Anorev, a place where time has stopped and nothing changes. For a little over an hour, I did just that with 23 eight year old children. As I read Return of the Dapper Men to them, I watched as they entered the world in their own minds, I listened to the gasps of surprise and wonder and observed the overall silence of enrapture. That in and of itself is amazing review. Kids are honest. They don’t suffer boredom or disinterest. They sat so amazingly quiet, so entranced were they by the world of Anorev, that they only spoke to ask a question for clarification.

After reading the book, I passed the book around so they could look at it up close and we discussed the story from their perspective. We talked about the world, about how much they liked the book, including a few minute interlude where we talked about Fabre’s hats (everyone had a favorite), they asked questions, answered each others questions and they marveled at the artwork in the book, discussing their favorite pages and scenes. They loved the underground city, and they enjoyed trying to find all the different components of Fabre’s home. Most of what we talked about included spoilers, so  just know that your children will love it, and so will you. I have read the book over and over again as it has quickly become a favorite with both of my children, and each time we notice something new.

I will leave you with this exchange I overheard:

Child 1: “Why did they live underground instead of in the city?”

Child 2: “Underground was more fun. They could play all day and have all that cool stuff”

Child 1: “Not me. I would want to live in a house, even if I had to clean it myself.”

And a few of the flurry of questions that were asked:

Why did he ask so many questions? (I loved this question, especially because they were asking so many questions!)

How did they come up with the characters?

And what happens next?

I look forward to reading the future installments to my own kids and bringing them in to their classes to read to the group as they get older. I think my next craft day in the classroom may just have to be decoupage since they loved the art in the book so much and though the style was “really cool” when we talked about it. Thank you to Jim McCann and Janet  Lee for creating such an interesting and thoughtful world that I can share with all those around me.

Pandemonium Manor

Posted: January 26, 2011 in Uncategorized

Crisp, white paper, college ruled, a thick ballpoint pen, a mug of hot, dark coffee, thick and creamy, my ripped up writing pants, denim and thirteen years old, an ugly green sweater, worn in with hard use. These are my tools. Some days, I can go without the pants or the sweater, some days I may even be able to write a first draft at the computer, but when hit with writers block, or if I just don’t have the motivation to do what I should do, I fall back on these few things as a way to get me going. I assume that we writers all have little things like this. Sure there’s the music we write by, or maybe the scents we desire, but the clothing is just as important. It is tactile pleasure. When I am writing, I want my environment to exemplify my own desires and wants. The changes happen depending on what I am writing. Currently, Sonny Rhodes and blues is my music of choice. When working on my novel, I prefer the Enya style of music, or just some tried and true classical. The different characters of my graphic novel define their own musical melody. Writing is a passion just like any other, where some days it doesn’t matter what is around you, the passion overtakes you and it just happens. Other days, the mood needs to be right, and some preparation is involved to make it perfect. Getting the words to flow some days feels like beating your head in with a rock, others, breathing deeply the scent of fall. Yes, the routine is important, finding the time to write no matter how much laundry you might have to do, setting a schedule and sticking to it to the best of your abilities, but how do you get into the routine in the first place? Or, how do you get back into it after a hiatus, whether it be days, weeks, months, or years?
I see writers all the time giving helpful tips to do just that, but what about those of us who are more chaotic, more prone to randomness than routine, who find routine to be stifling and oppressive at times? That is where my senses come into play. When the routine of my day breaks apart, or I just can’t focus on writing no matter how long I stare at the blank sheet or the chapters of prose, I go back to what ignites my senses. Life is random, unpredictable and uncontrollable, and sometimes your writing has to feed off of that. Trying to force order where it doesn’t belong only works some of the time, the rest of the time, you control what you can, and let the chaotic forces take you where they will. When life gets in the way, sometimes the best thing you can do is let it. Take a break, pay attention to the daily drudgery, let yourself wallow in sickness with a blanket and a good movie, maybe have a few days where it seems like all you do is take care of someone else and learn to love those days. That’s life and it is necessary. Trying to omit it doesn’t work, feeling bad about the break from your routine certainly doesn’t work, so learn to love it all. Every dish you wash, every scrape you kiss, every whine that vibrates off your skull, every sick day, every kiss goodbye or hello, every “I love you” spoken, and every bit of life uncontrollable. Take it in, love it all, and when you can, set everything up to your pure enjoyment, and use all of that pandemonium to guide you in your writing.

Random Words Dancing

Posted: January 6, 2011 in Uncategorized

Christmas break has ended, and with it the 2 weeks of running around like crazy, the kids opening a ridiculous amount of presents, and the seemingly endless hours of video games enjoyed by all in my household. How will I endure my time without the sounds of Legos breaking and battling, Mario music that won’t get out of my head, Jasper’s voice in the sanctuary, or the jumping about of animals you can virtually pet? Back to work, back to school, means going back to a quiet house, a lower electricity bill, and a bitter sweetness as the kids return to school.

And this is all, quite obviously, not nonesuch.

How about getting a sitter on New Year’s Eve so you can sit at home with a couple good friends and some good beer and kill zombies together? No?

Then how about getting back to work on my graphic novel that has been moldering for much to long? Most definitely.

Writing is my passion. Any sort of writing is enough to keep me happy, so getting back to work on a project that means so much to me, while it may not be profitable, is still a dream come true. I love words. I love to write them, use them, and even abuse them. They don’t mind. They always come back, no matter how horribly you treat them, and they will happily sit in your mouth, popping out when you need them, or even when you least expect them. In our house we love silly words, mispronunciations of words, any word, as long as it makes our mouths happy. And that is ultimately what this blog is about. Whatever words I feel like, whatever topics come to mind on any given day. I’ll write what I want to write, and feel free to comment, using whatever words make your mouth happy. I may ramble, I may be random, but isn’t it our rambling, random, individuality that makes us all nonesuch?