I get monthly treatments for my MS: apheresis (plasma transfer) every month, IV steroids most months, and Ocrevus twice a year.

Yesterday was the day I made my monthly visit to the apheresis clinic where I have the procedure done. I’ve thought of the whole plasma transfer thing as kind of a macabre, modern-day date with a vampire, the major exceptions being that it doesn’t involve my neck, and what is removed is replaced. For those of you who have followed this space for a while, you may remember me describing the process a long time ago. For those of you who haven’t, or may have forgotten and are curious, you can refresh your memory here.

The reason I bring this up is because one of the lovely symptoms MS can bring to the table is fatigue, and I’m not talking about the feeling tired and run down variety. No, the kind I am talking about is the bone crushing, soul-sucking, quasi-paralyzing kind.  I’ve read about how this can affect people through various articles and blog posts, but never experienced it for myself. Until yesterday, that is.

Now, it is not unusual for me to feel tired and a little run down after the procedure, particularly once I get home. In fact, this is something I feel all the time, but it is manageable. I might feel like I’m walking in molasses, or that my head feels like it is full of cotton, but it’s no worse than having a bad night’s sleep. But for some reason, yesterday was different.

It didn’t start out that way. I drove to the building site of our new home once my procedure was done to help K remove some of the slush that had settled onto the floors. The roof is up but the structure is not yet fully enclosed (more on that in a future post) and we have had a really strange winter so far (more on that too!) where most of the storms have involved a little snow, followed by sleet, then freezing rain and/or rain. Such was the case Wednesday night, but that was followed by sunny skies and fifty degree temps in the afternoon, and we wanted to remove what melted or plopped onto the floors before it re-froze.

K had done most of the work by the time I got there, but I started to push and scrape what I could find out of the structure when it hit.

The first sensation was a wave of fatigue so strong that I became a little nauseous, so I slowed the pace down. As we left the site ten minutes later, it felt like my feet were stuck to the floor, and I felt very woozy. The normal cotton in my head was replaced by thick sludge. I never said a word to K because she would not have wanted me to get into my car and drive home, but it was less than a five minute drive, and it never felt like I was going to pass out.

Once we arrived home, I struggled to get my muck-boots off, then proceeded to the rocker-recliner. Once settled, I leaned back, closed my eyes, sunk into the soft leather, and my body felt like it weighed 1,000 pounds.  It felt as if I was literally glued onto the chair. I wouldn’t lift or move my head, could barely move my arms or legs, not that I wanted to, and even moving my fingers felt like a overwhelming chore.

Although my eyes were closed, I couldn’t sleep. I heard everything going on around me, but it felt as if I was in more of a trance-like state: part of me was present but another part of me was in never-land. The experience was more weird than alarming. I stayed like that until it was time for dinner, when I peeled myself off the recliner, and trudged over to the kitchen table. I was suddenly ravenous once I saw the plate of pasta, shredded cheese and vegetables, inhaled it in less than five minutes, had seconds, and began feeling a little better.

Afterwards, I did a couple of chores, but the fatigue started setting in again. So I announced to the room that I was done for the evening, dragged my sorry ass up those fourteen stairs, took a shower, and shuffled into the bedroom. Once comfortable, I turned on the television, queued up something on the DVR, pulled out my vape stick with the MMJ, and took two long pulls off it instead of the normal one. Hey, I figured feeling supremely stoned would be a lot better than what I was currently feeling, and I was right. Consumed by what I was watching, I forgot all about the other stuff. A few hours later, I was ready for sleep, closed my eyes, and had a long, uninterrupted, dreamless sleep. The fog hasn’t completely lifted as I write this, but it’s a pin-prick compared to yesterday’s sledgehammer.

I don’t know if this was an anomaly or if it will become the norm. The one thing I did not do before the procedure was eat much. Other than coffee, I didn’t have any breakfast and had a can of soup for lunch, which I thought would be enough. I’m guessing that yesterday’s experience may become a once in a while thing, and we’d test that theory under normal circumstances next month. But March is one of the months where I get the Ocrevus in addition to the apheresis, which brings a completely different host of symptoms, so we’ll have to wait for the time after that to see if this almost-paralyzing fatigue occurs, assuming I remember what it felt like.

Today is a new day, one in which the steroids-induced hiccups have arrived and will plague me throughout the day and night, becoming worse and more frequent as the day gets longer. If I’m unlucky, they will make it hard to fall asleep or wake me up throughout the night. I hate those little bastards. But we do what we have to do to avoid a date with the dreaded wheelchair.

Besides, I can always double or triple up on the vape stick if it becomes intolerable. That always seems to settle things down.




The Beauty of Shitty First Drafts

1st draft

When I began writing the manuscript for my novel, I didn’t know how to go about it. I had a concept and knew what the opening scene would be, but that was all. So I tried to take a common-sense approach.

You obviously need characters for any story, so I created a list of names and their relationship to the main character. You also need a plot, so I roughed out an outline that consisted of chapter numbers and the general theme of each chapter. This step took awhile because if this outline was going to be my roadmap, I actually had to think the story through.

Writing the opening prologue was a piece of cake because, big surprise, the main character has MS, and the prologue is a dramatization of the day MS first introduced itself to me. But then the process came to a screeching halt. Like a deer in the headlights of an oncoming tractor trailer, I stared back and forth between the computer screen, the keyboard, and the outline. I didn’t know how or where to tell the story that was in my head. Fortunately, I remembered something K told me about a piece of advice she attributed to an article she read about the novelist Ann Lamott.

To paraphrase Lamott, the key to writing a story is to complete a shitty first draft (our words), one where you don’t worry about the words, how it flows, if it is free of spelling or grammatical errors, or anything like that. Just get the words down first, and worry about that other stuff later.

That little nugget freed me from my insecurity and saved time, the end result of which was a complete manuscript that exceeded 140,000 words. What I found intriguing and ironic about the process is that many chapters I assumed would be the most difficult to write were often very easy, and those I assumed would just flow were the most difficult.

The most important thing was to write without a conscience. I followed Lamott’s advice to a T, and would recommend that anyone who gets stuck on a project to do the same. Just be prepared for what you’ll see when that shitty first draft is done

What I saw was god-awful: spelling and grammar mistakes galore, sentences, and sometimes complete paragraphs, that didn’t make any sense. Going back and editing this swill was painstaking, frustrating, laborious, and I wound up doing it more times than I care to remember before sharing it with my editor. It was a humbling experience.

What didn’t change, however, was the core of the story, and when you have that, you have everything. Anybody can make the words sing, but there is no music unless you create the notes. In my case, the core didn’t change much from the first writing to what was probably the twentieth. I lost count after a while.

Why so many re-writes? First of all, it took forever to catch everything that needed fixing. After every re-edit, I re-read the manuscript and always found stuff I missed the previous time. Once I got to the point where I thought it was good enough to share with my editor, it came back with a lot of red ink and recommended changes. Each time I completed the edits I agreed with, it would come back again with more suggestions. On and on it went like that until we were both happy with the manuscript.

The most difficult challenge was to pare the text down to less than 100,000 words, because my editor believed any author’s inaugural work should be 100,000 words or less. Who was I to argue? And I must admit, there was a lot of fluff. The final product was much cleaner and tighter than what I started with.

Ultimately, the manuscript was done, and I compared the process to what I thought being pregnant must feel like. In the beginning, you are excited, thrilled and enthusiastic beyond belief,  but nine months later,  you’re uncomfortable, sick and tired of lugging the weight around, and just want it to be over and done.

I whole-heartedly embrace the shitty first draft philosophy. It’s a practice I have since followed with everything I write, including this blog. I encourage anyone to stop being critical and get the idea out first because if you self edit while writing or stop in mid-stream to look at what you’ve written, you can lose your train of thought, not to mention getting frustrated as hell.

Better to save your frustration for later after everything is done. That way, you at least have a complete text to mold and shape.





Tell the Story Challenge

Story challenge

The incomparable Susan Richardson passed me the baton in this challenge, which asks the writer to create a story around a picture the previous author has selected. I’m always game for these types of assignments, primarily because it is often difficult to get the creative juices flowing every week, and having something like this provides a ready-made subject matter. Plus, I love a challenge!

I also love Susan’s work, and what she produced for this challenge is exceptional. I have passed the baton to her on a number of occasions for different challenges of this nature, so I’m sure this is her way of reciprocating. I actually welcomed it, until I saw her picture, that is. Talk about a WTF moment. My first thought was, “Sue, I thought you were my friend,” but as I stared at it for a few minutes, what I would write became obvious. What follows is a longer piece than what you normally find in this space, but I hope you like it.

My name is Aimee. I was given to Sarah when she was a toddler, and have been with her ever since.

From the beginning, my home was on the nightstand next to where she slept, where I watched over her at night, and made sure she stayed safe. Around the time she turned five, Sarah began to lovingly brush my hair every night before her Mom came in to read her a bedtime story. During these intimate moments, Sarah told me about her day, and over time I knew all of her hopes, dreams and fears. If she had a nightmare the previous night, Sarah would plead with me to keep the monsters away. How cute it that?

We drifted apart a bit once Sarah hit puberty. She’d occasionally brush my hair and confide in me, but for the most part, I stayed on the night table next to her bed, keeping vigil over her and her room.

Her father, who was in the military, moved frequently. I moved with them, and remained a fixture next to her bed in each new location. I went to college with her, in addition to the various apartments she lived in following graduation. While our relationship evolved over the years, we have always been a team.

Sarah began to confide in me more once she began dating. As she became older, I was witness to the moment she lost her virginity, and every occasion she allowed someone to share her bed. I was witness to her transformation from an insecure, awkward teen to an assertive, confident woman.

I knew everything she thought and felt about her intimate acquaintences, and saw her heart get broken a couple of times. I wanted to murder the bastards who hurt her, but Sarah was resilient, had a healthy self-esteem, and always rebounded farily quickly.

So even though our relationship evolved, I was content. I mean, she wasn’t a kid anymore, and most people would have either discarded me a long time ago or packed me away in some anonymous, forgotten box. The fact that she didn’t demonstrated she still cared. So did the fact that she still smiled at me on occasion, always made sure that I wasn’t covered in dust, and that my place on her nightstand was clean and free of debris. She was still my person, and I was happy with the way things were. Until she met Matt, that is.

Matt was the keeper, unfortunately. He was a strikingly handsome guy with a body that looked like it was carved from marble. Sarah fell head over heels for him, and I couldn’t say I blamed her. Besides his looks, he was kind, thoughful, and had a wicked sense of humor that made her laugh. Hell, it even made me want to laugh on occasion. But I thought there was more to Matt than what met the eye.

You see, Matt always had a very high opinion of himself. He also liked to party, and was a different cat when he drank. At least I thought so. While he never laid a hand on Sarah, he could become short and irritable. His humor became more biting and mean-spirited, and I sensed a temper and darkness lurking below his surface. It worried me.

My issues began when he moved in with his dog, a chocolate lab named Belle. For some reason, Belle thought I was her personal play-toy. She’d frequently sneak into the bedroom, and knock me off the nightstand with her nose. Sometimes she would bat me around the room with her paw, sometimes she would grab me by the hair, and toss me around the room, which I hated. I drew the line at becoming her chew toy however. On a few occasions I had to discretely maneuver my way out of her mouth in a way that didn’t attract suspicion when she tried to gnaw on me. I do have some abilities, you see, but until then never had the need or desire to use them.

But Belle remained a problem. What I hated more than anything is when, usually after I extricated myself from her mouth, she would slobber all over me. Sarah didn’t like that either. She’d find me all wet and nasty on the bedroom floor, clean me up, then complain to Matt about keeping Belle out of the bedroom. Matt seemed irritated that Sarah cared more for a “stupid doll” than his dog, and half-heartedly complied. These events didn’t happen as frequently, but they did continue.  I was getting fed up about the entire situation and decided to do something about it the next time Belle bothered me.

One afternoon when Sarah was jogging, Matt absent-mindedly left the bedroom door ajar. I could hear Belle bounding up the stairs, and prepared myself. She pushed the door open with her nose, then looked around before entering, as if she knew she was on the verge of being a “bad dog” if she was caught. The urge to abuse me outweighed any potential repercussion, however, and in she came.

Belle made a bee-line to the nightstand, knocked me onto the floor, and started batting me around. Normally I would stay put like an inanimate object, but this time I rolled across the floor towards the bed, hoping to find sanctuary beneath it. But I’m not very big, and could not move as fast as that beast, who intercepted me before I could reach my destination. My unexpected movement apparently added an element of excitement to the game, and she grabbed me in her mouth with more gusto than usual and threw me high into the air. Fortunately, I had a soft landing on their bed, but Belle jumped onto the bed, grabbed me in her mouth again, and flung me harder. I flew across the room,  hit the wall hard, and bounced against something hard on the way down before hitting the floor again.  It hurt like hell, and I was disoriented.

Belle was feeling it though, and let out one loud bark as she came after me. Grabbing me in her mouth, she started treating me like a chew toy. By now I was mad as hell, and needed to let her know who was boss.  So as Belle was holding me in her paws and gnawing on my head, I quickly hopped into her mouth and forced my way into the back of her throat.

That got her attention. She was stunned, whined loudly, shook her head violently from side to side, and knocked a chair over as she wobbled about the room, making a hell of a racket in the process. I felt her fear, and couldn’t help but smile. Matt must have heard the racket because he raced upstairs to see what was going on. When he arrived at the scene and saw Belle’s dilemma, he stuck his hand in her mouth to retrieve whatever was choking her. I wanted that dog dead, however, and bit one of his fingers as hard as I could, hoping he would let go.

Matt screamed but hung on, and with a forceful yank, was able to dislodge me after prying Belle’s mouth open with his other hand. Belle ran from the room like she was shot out of a cannon and never bothered me again, so I at least accomplished something on that front.

But Matt? His forearm were scraped by Belle’s teeth from when he gave that one final pull, but that isn’t what confused him. Instead, he gaped at the hole on the side of his right index finger, directly below the knuckle.  It was bleeding a lot, but apparently not enough to require stiches, and a chunk of skin was missing. Matt glanced back and forth between the finger and me, with an incredulous look on his face. His eyes told him one thing, but they also told him I don’t have a mouth, so how in the world could I have bitten him? He pondered this for a long time.

Matt never said a word to Sarah that I am aware of,  but I think he understood there was more to me than meets the eye. After cleaning me up, he moved me from the night stand to the top of a bookcase on the opposite side of the bedroom, and turned me so that I was looking out a window. Sarah put me back on my rightful place later that evening. He threw a suspicious glance my way as they were getting ready for bed, but said nothing, and that was the end of it. For a while, anyway.

Much to my dismay, they married, less than a year later, and bought a house before their first anniversary. As they were moving in, Matt conveniently forgot to unpack me, and put the box I was stashed in into the guest bedroom closet.  Sarah, who was pregnant at the time and was more interested in getting the nursery prepared, didn’t notice. I don’t know exactly how long I was imprisoned in that dark tomb, but I missed the duration of Sarah’s pregnancy and the birth of their child.

I was depressed, and felt forgotten and abandoned. My person was gone, but I stayed put because I knew that if I ever made an appearance, Matt would get rid of me.

But something troubling was happening to the marriage. I don’t know what triggered the problem, but they began to argue constantly, and the baby cried a lot more than it used to. Sometimes the arguments got so loud I could hear them downstairs from the my closet prison. I was concerned, to say the least, but what could I do?

Last week, one of their arguments spilled into the guest bedroom, and after a period of shouting and name calling, I heard a sharp slapping sound, followed by someone crumpling to the floor. I knew it was Sarah because she was sobbing uncontrollably as Matt stormed out of the room. A rage began to well inside me. My person was in trouble and had no one to help her.

Imagine Matt’s surprise the following morning when, as he opened the medicine cabinet to get his shaving cream, he saw me glaring at him. My eyes had literally turned wide and red, like glowing charcoal embers. It looked like  he was going to have a heart attack. It’s a pity he didn’t.

Shaken to his core, Matt marched me downstairs, and I soon found myself mingling with food scraps and other slimy, smelly shit in kitchen garbage container under the sink. I tried my best to bite him during the journey downstairs, but held me by the hair, not letting me get near him. I guess he remembered the incident with Belle. Then he pulled the garbage bag out, tied it up and deposited it in the big green container they keep outside for he next day’s pick-up.

I’m sure he thinks I’m history, but unfortunately for him, I can do a lot more than bite.

I easily escaped from my smelly grave and have been planning and keeping a low profile ever since. Once I made the decision, I found a discreet spot on one of the family room end tables that is tucked in the corner next to a sofa, and hid there.

Sarah is upstairs with the baby now, and won’t be coming downstairs any time soon. She is a sad, broken husk of her former self, and her bruises haven’t faded completely.  But they will heal, and so will her soul, once I get rid of that motherfucker.

Matt, you see, has a habit having a drink or two (sometimes three) during the evening, after which he usually lies down to watch television before passing out. When his drunken eyes close tonight, they won’t reopen. My dilemma is I how it’s going to happen.

It would be better for Sarah if it looks like he died in his sleep. There would be less questions that way, and she doesn’t need any more trauma in her life. But I selfishly want that prick to suffer.

Decisions, decisions.

Now it is my turn to pass this off to three folks you need to discover. Tom, (Tom Marches On) who I am sure is licking his Super Bowl wounds and needs a diversion, Billy (aka Superman) and Jane, (The Natural Calamity version), you’re up. Good luck with this picture. I am looking forward to reading what you can come up with.


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