Tag Archives: vampires

Too Many Steves

Multiple Sclerosis in the dating world


*****The names of the males in this blog post have been changed in order to protect my reputation****

I was talking to friends about the need to change some names while editing my book. I told them that one of the names I had to change was that of my most recent boyfriend, who was also one of the two loves of my life.

(Is it ok to have two loves of your life, maybe three? Especially if one was your very first love way back in high school and into your early twenties. There is that love of my life and the most recent guy and “one who got away” guy. That’s all. Just those three with some problem guys, no way guys, and “what on Earth was I thinking” guys in between.)


Anyway, let’s call this guy, the recent one, John. Since I haven’t talked to John in a while and so could not get his permission to use his real name in my book, I had to change it. I changed it to Steve, thinking Steve was a good name. I told my friends that I came up with the name Steve as I had always had a little crush on a guy named Steve Smith.

“But isn’t it weird to give John the same name of a guy you dated?” Serena asked.

“I didn’t date Steve Smith,” I replied. “I just had a crush on him.”

“No, not Steve Smith. But you dated Steve Jones. Remember Steve Jones???”

Serena was right. Not only had I dated Steve Jones but I had actually lived with him for a bit. My MS brain completely forgot about a total relationship. It wasn’t a terrible relationship either. It was actually a fun time in my life. How could I have forgotten all about Steve Jones?


This was very concerning. Memory loss with multiple sclerosis is very common. But forgetting an entire relationship was on a whole other level. MS has contributed to making my dating life pretty much non-existent. If it starts erasing memories of the social life I used to have, then what will I do???

Being single is one thing, but having always been single, especially if you weren’t? That is just way too much.

People ask why MS has affected my dating life. The simple answer is the fatigue. No matter what people say, dating takes work and work is exhausting. And since I am already pretty fatigued all the time, I feel like a zombie.


I’m not picky but I am not sure that it would be good idea to date someone who wants to date a zombie.

Who do zombies date anyway? Not vampires. Zombies don’t have much blood and what little blood they do have is filled with interferon and other meds. Not a good match for a vampire.

A werewolf? Do zombies date werewolves? That seems pretty hairy to me.


On and on the thinking goes and just like that, I am even more exhausted just thinking about dating.

But in case you think I am bailing on this dating thing too early, let me give you an example. I was invited to a social gathering, a party if you will. With my first glass of wine in hand I started talking to a guy as it turned out we had something in common. We talked about what we had in common. Then I realized we were talking!

I didn’t know this guy’s story. He was about my age but was he single? Nice?

I started to think too much. My legs started to hurt from standing there talking to the guy. I started to panic and with only two sips of wine, the panic was not subsiding. Should I continue to stand there and gulp down wine while I attempted to continue this conversation?


It seemed too much. Getting ready for the party had been tiring enough. What I really wanted was a nap. I couldn’t take the stress. And since stress is not good for MS, I ran away from the guy into the lawn chair in the middle of my safety net- ie, the people who had invited me to this shindig in the first place.

Fortunately, the chair happened to be right near the table holding all the wine.

Then I proceeded to beat myself up for running away and hence, just gawked at the guy during the whole rest of the event. That, of course, made him think I was a weirdo. I prefer the term zombie.

Fast forward several weeks and I get invited to another shindig. I find a table with friends and high chairs. I am mostly through my glass of wine when I realize that a guy I recognize from my party days happens to be standing directly behind me.

This was a somewhat fancy event and I was dressed up a bit and had actually put on some make up. Girly girl make up, not zombie cover up.


I was sitting, felt giddy with the wine and decided I would not repeat my mistake from the last social event. I re-introduced myself and the guy and I chatted for quite a while. He was there alone and I wasn’t panicking. I could do this chatting/flirting thing.

Someone called to him and he moved away. Eventually I moved away from the area as well and then it was time for my friends and me to leave. I didn’t talk to him again but felt confident that I had taken a step forward, moved out of my “destined to be single forever” shell.

Then I caught a glimpse of my reflection in the car rearview mirror and realized I had a bit of pesto from one of the appetizers stuck in my teeth. That made me re-analyze the whole pesto added conversation and I got tired all over again. I’m sure the wine didn’t help. I went home and, you guessed it, took a nap.

So you see, dating is very fatigue inducing and stressful to me and my MS. I don’t really mind being single as I have had a pretty fun and interesting social life in the past. Which is why I need to remember it and why forgetting Steve was very traumatic!

Luckily, I had Serena to remind me. That’s what friends are for.

At least until I find me a zombie.

I will name him Steve.

***I take this blog writing gig very seriously and always try to research what I am writing about. Turns out, there is a dating site for zombies! Who knew? If you know a single zombie looking for love please direct them to ZombieHarmony. Their tagline is “because the apocalypse doesn’t have to be lonely…”


***Further research shows that the site is no longer active. Guess all the zombies have been matched.  Damn.

***For observant readers interested in my future book, you read right. I am editing away. The goal is for the published (still unnamed) work to be released just after the New Year. If the apocalypse doesn’t get me first…




MS/PMS MonSter Mash

An MS transformation

I recently joined a Facebook group for people with multiple sclerosis. The group is awesome and if anyone is looking for an online community where you can ask questions, meet other people in circumstances similar to yours, or just joke and vent, I encourage you to look into it. It is called Friends against the MonSter.

When the friend who started it told me about it, I was a little confused about the title. To me, monster is an affectionate term. I think it comes from being a kid.

When I was maybe eight or nine, Monster Mash by Boris Pickett was fun and huge and my favorite book back then was called How to Take Care of Your Monster by Norman Bridwell. Somehow I lost that book and have never found it again. If anyone knows where I can locate it, please let me know.

Several years later, when my nephew Drew was a grouchy baby living with colic, I took to calling him Drewmonster or Monsterbaby– see, total affection. In my messed up brain, for some reason when I think monster I think cute and cuddly. Thus, the name of the FB group didn’t seem appropriate. It is a page for people living with multiple sclerosis and I have yet to find anything cute and cuddly about that.

Vampire, Zombie, Serial Killer, Alien, Ghost, the specific name of frightening creature is frightening, but the word monster just doesn’t scare me.

Now Drew is a grown man and he and his wife have two little boys of their own. Both kids are adorable, and yes, cute and cuddly. One is just a baby and as innocent as a baby can be. The oldest of the two is 21 months and is smart, funny, delightful, and for the most part, happy. Like his dad, he is also stubborn. Upon this discovery I began to rethink the monster term. Something wasn’t clicking and I think I figured it out.

For 99.9% of the time, the child looks like this.

But when he is exhausted and his stubbornness kicks in, he can suddenly and terrifyingly change. I swear, one time I needed to change his diaper and he didn’t want it to be changed. I am still shuddering from the Linda Blair like look he gave me and had nightmares all that evening. I could literally see the transformation from adorable, perfect little boy to a creature I did not recognize.

This transformation reminded me of something but I wasn’t sure what. Eventually I figured out that it reminded me of me! But me when PMS attacks. All you male readers who hate hearing about things like PMS, may want to skip ahead a bit.

Before my family and I left on the trip to visit these amazing kids, I was trying to get things crossed off my to-do-before-I-leave list. As everything I attempted to complete didn’t get completed and were doing me in in their own frustrating way, I suddenly underwent an insidious transformation.

I could feel this ugly scary black cloud envelope me and I began to stomp around my home growling these guttural growls and shooting daggers at anything in my path. My landlord needed to stop by and when I answered the door he must have been frightened by the creature I had become. He backed away from the door saying the thing in the house he needed to check could be checked later and ran to his car.

“Wow, that’s screwed up,” I barked to no one, “why the hell did he come over in the first place??”

Sure enough, six days earlier than expected, my cycle started that evening.

Ok, so PMS can turn me into something scary but who knows what that something is…..

After a plane ride with my mom and sister to the state where the youngest members of our family lived, the transformation happened again. Two days after the arrival, the exhaustion from the long day of flying and headaches from all the noise, overwhelmed me. Then, landscapers showed up to work on the property we were staying at, complete with their machines and loud motors.

Next, somebody ticked me off and (and there was definitely no PMS about it,) the black cloud showed up with a vengeneance. I turned mean and scary, and my family and residents of the neighborhood began to run screaming from me as I approached.

Insane mood swings can be considered a part of MS, so I have been told. What is this blackness born of frustration, aches, and pain? What does it turn us MS’ers into? Where does it come from?

Since it is MS, it is probably unlikely that it will get figured out. But as my young great nephew can turn from cute and cuddly into a monster child in two seconds flat, I realized so can I. Whether it is PMS or MS (put them both together and I can probably take on Godzilla), 99.9 of the time I am still cute and cuddly.

Thus, I now understand why the FB group is called Friends against the MonSter. The monster is our cute and cuddly selves under the influence of the insidious demon that is MS. Or, PMS. Or maybe like my nephew, our stubbornness at getting a diaper change when we are clearly not in the mood for a diaper change….

Post Scripts to this post

1. There are actually several great FB groups I belong to that can help people with MS have a forum to discuss living with chronic illness. The above mentioned is only one of them that I used for this blog because of the great name although it is also a great page. Please contact me if you would like more information about this group or others- [email protected]

 2. While all of the above is/was true, and this blog needed to be written, this was also a place where I could get away with showcasing pictures of some of my nephews. The first picture is Drew during one Halloween and the others are his firstborn.

 3. While I truly hope my blogs are helping others and that is my main and only goal, I still wouldn’t mind a WEGO award! Here is how to nominate me if you think I should be considered.

WEGO Health Activist Awards

 4. Thank you all!

Scary Brain, Scary Movie

Multiple Sclerosis is a Horror Show

It is the afternoon and I am shuffling around my house, trying to focus. I have my lists; all the MS helpful tip books suggest lists. There is the to-do-this-week list. There is the to-do-before-Christmas list and the things-I-should-try-to-do-in-general list.

There is, of course, the things-I-should-try-not-to-forget list. But the lists and lists were not helping me focus. Oh, I know, the dishes need to be done. I will feel better when I have finished that.

So I start with the dishes and realize I might have more motivation if I had music going. I dry my hands and head to the stereo. But then I see my computer and try to remember if I responded to that important email I received this morning. Yes, I see now that I did but there are some more emails to read.

I get overwhelmed with the amount of junk emails and chain emails coursing through my web account and give up, deciding to play FreeCell instead. What is up with us MS’er’s and FreeCell? Every MS’er I know is addicted to FreeCell.

My meds are giving me an awful taste in my mouth so I get up to brush my teeth and drink some water. I see that I barely started the dishes and dunk my hands in the soapy dishpan yet again. And three plates and five minutes later the 8ozs of H2O has gone right through me and I am off to the bathroom. How on earth am I supposed to drink eight more glasses today? I might as well move into my bathroom.

The fog in my brain continues. The only thing I can focus on is my lack of ability to focus. I am forever existing in this fog-like state. Perhaps because Halloween has just passed I think of the movie The Fog.  Figures. Leave it to me to equate my multiple sclerosis to a horror movie. But is The Fog the right horror movie?

I am wandering around lost in my own little world and not feeling quite right- almost zombie like. Yes, zombies, zombies are a good description. I am an MS zombie for sure. I will likely stay like this until I fall asleep where I will be alive but dead to the world for at least ten hours. Then it hits- it is not The Fog but Night of the Living Dead.


My zombie nephew

Somehow thinking of my MS in terms of horror movies brings me comfort as I try to remember what it is I was supposed to be doing. Night of the Living Dead, that is definitely the horror movie for sure.

Or is it? Sometimes I just want to scream. Actually, I just want to scream a lot. Maybe my MS really is Scream? I have always been a Neve Cambell fan. But does the movie Scream completely reflect all that my MS is to me?

It likely depends on what my MS is doing on any given day. Often, it makes me think I am going crazy. I think of the classic line in Psycho, “she just goes a little mad sometimes. We all go a little mad sometimes.”


My costume before MS

I remember all the hysterical mood swings and weird symptoms I experienced before I knew I had the disease. I remember hundreds of times of being convinced I was getting the flu due to the insane body aches, only to have them disappear, believing myself to be a hypochondriac.

I remember all the people in the world around me being totally off kilter but acting as though I was the one who was screwed up. Like when I had to go to my drycleaner’s several times in one week insisting that they had given me the wrong pants.

“Yes, they fit. Yes, they are the same color. Yes, they have the same fashion label and size label. But these pants have cuffs at the bottom hems. My pants don’t have cuffs. Yes, of course I would know if they were my pants or not. I will keep them as I need black work pants but one day soon someone is going to come in and say they have the wrong pants and I am telling you, I have theirs and they have mine. Feel free to call me when that happens and I will exchange them.”

My drycleaner and I had this little diatribe over and over. Funny how the other customer never realized she had the wrong pants. Yes, Psycho is the movie. That is the one that most describes my MS.

And it is appropriate and personal as when I was a teenager I had actually waited on Anthony Perkins at a candy store only ten days after seeing Psycho for the first time. My friend Heather worked at the store too and she was too freaked out to wait on him so it was left up to me. I gave him a whole extra ½ lb of penuche fudge so he wouldn’t bring out his knife and start swinging. Yes, Psycho felt right.

Bathroom again, but I stop to remove the pebble in my sock. But there is no pebble. What is that annoying feeling? And that one, the sudden sharp, jab in my left arm? And that one, the squeezing and releasing of my abdomen as if my stomach were in a vise?

And here are those weird ear noises again- has my body been taken over by aliens? That’s it, Invasion of the Body Snatchers. That is definitely the horror movie that best describes my MS. It all makes sense now- aliens have taken over and turned me into a screaming, psychotic zombie living in a deep fog.

Finally, having this serious question answered and finishing up likely my tenth trip to the bathroom, I try again to remember what I was supposed to be doing. Oh right, the dishes.

I shuffle back and plunge my hands into the now cold water. As I do so I feel awkward and completely out of sorts. I am tired and clumsy and blinking from the glare of the setting sun. Funny how images of The Creature from the Black Lagoon begin to cloud my foggy, psychotic brain.

If your MS was a horror movie which horror movie would it be???????

Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net

MS Counts

Multiple Sclerosis and Arithmetic

This August I received some disturbing news; Count von Count passed away. I didn’t hear about this from the internet or TV news, but from my own local newspaper. It seems that Count von Count actually lived in my neighborhood (my real neighborhood, not Sesame Street.)

It made me sad that I had a famous Count living near me and I didn’t even know it. Technically I suppose, one would say that Jerry Nelson, the man who voiced the Count, was the one who actually died but to me that’s just semantics. Count von Count is dead and I could really use his help right about now. Vampires are supposed to exist forever, aren’t they?


I have said before that I missed out on the wonders of Sesame Street when I was growing up, as mainstream America, my mom included, worried that PBS and a big yellow bird might be sending out subversive messages to our nation’s children and thus, the show was forbidden. Missing out on the amazing learning techniques the Count had to offer has convinced me that is why I was horrible at math.

I have gotten over it and am not in therapy or anything, but it is still painful. By the time my nephew came around, my mom was less worried about secret messages hidden in various parts of that street and I would watch when my nephew was visiting. By then it was too late. I was still lousy at math.

As I age and MS takes over, my math skills, especially counting, have gotten worse. I’m not sure if I hung out with Count von Count he would be able to help or not, but it is a lost opportunity.

My first issue with counting is what my family refers to as “Portuguese math.”

Now before you freak out and accuse me of using stereotypes and being discriminatory, please let me explain. And I bet those of you who grew up in Portuguese households will understand and agree.

“Portuguese math” is when you take a number of something and then multiply the number by how many times you talk about that number. For example, around the dinner table your brother might say that when he was fishing he caught a fish that was ten inches long.

By dinner the next night and after he has told 6 of his buddies the tale, the fish is now 60 inches long. By the next family gathering, the fish will be 6 and one half feet and somewhere he has the picture to prove it.

Among my Portuguese friends one has an aunt who says her rosary 80 times a day and a cousin who was asked out 250 times in one weekend. With a daughter that popular with the boys the aunt needs to keep up with her prayers.

Still confused about “Portuguese math?” Here is an MS example.

Last night I swear I got up to pee at least twenty times. By the time this blog post comes out, I will swear that night (10/1) I got up to pee at least 200 times.

By Christmas the story will go like this “the worst was that night in October- remember? That night I had to get out of bed to pee at least 2000 times. Damn MS!

Speaking of MS, MS is now also affecting my counting skills. My friend asked me to make dinner reservations. I told the restaurant there would be four of us. I had counted everyone included in our party and did not leave anyone out. I even remembered to count myself. I counted twice actually.

But when we arrived at the restaurant and everyone had shown up, the hostess was surprised that there were five of us. I counted again, and again counted myself, but I still got four-me, Lexi, Sam, Jack and Bunny-four. Imagine my confusion when they sat us at a table for five and there was not extra place setting. Me, Lexi, Sam, Jack and Bunny- four. I’m still confused.

But here is where MS and math totally overwhelm me. My whole life I have been taught that there are 24 hours in one day. Most people sleep about 7-8 hours leaving them with what my calculator reads- truly my calculator, I had to go get it to figure this out,-16-17 hours left in the day. How come when I count the hours of my day I only come up with 5?

Dismissing the fact that I probably sleep about 10-12 hours a night and that when I get up it takes me a while to get going. And dismissing the fact that by 6 in the evening I am done and only able to veg out in front of the tv or computer.

If you call during that time I may be in such a comatose state that I am not responsible for our conversation. Fair warning- I may be too out of it to warn you then.

I consider it a good day if I am up, showered and dressed by 12PM, or 1 PM on a decent day. Likely, I will rest for about 45-60 minutes somewhere around 3PM and then before you know it, here is 6 PM again.

See what I mean? When I count the hours in my day I get 5, not 24. This makes no sense.

Oh Count von Count, how I wish I knew you better!



Image courtesy of / FreeDigitalPhotos.net

Image courtesy of / FreeDigitalPhotos.net