Chanel and Dolmades

I worked for a jewelry company in Chicago. As production manager, one of my responsibilities was to keep the contractors on schedule. We had different contractors for different types of jobs. Some contractors I liked, some I disliked, but I had to work with them, all the same. Some were willing to go the extra mile, to help meet your deadline, to make your customer happy, and some had the "you'll get it when you get it" attitude.

One particular contractor was in a building right down the block from us. He was my setter for intricate, special jobs. He did my ring. He learned jewelry making from a long line of jewelers in his family. He believed in craftsmanship and quality. I loved working with him. He wasn't particularly quick, but I knew when I inspected his work, rare was the day there was something wrong.

Aside from doing work for my company, he had a successful custom jewelry business, too.

One Saturday, he asked me to go with him to Chanel to look at wedding rings. He had a client who liked the way a ring was set, so he wanted to get a good look at it. The best way for him to see the construction was for us to go as a couple and look at wedding rings because the associates wouldn't rush us. In fact, they brought us water or coffee. Back then, it wasn't commonplace.

Anyway, as a thank you to me for going with him, he took me to lunch at his favorite restaurant. It was some little place off of Michigan Avenue, and I don't remember the name of it, but they had the best Armenian food. Their dolmades are unparalleled to this day.

So we were sitting in this restaurant, the only two people aside from staff. It was a cozy little place, lots of brick, dim lighting, and vine upon vine for decor. We're sipping our drinks, when we feel and hear this LOUD EXPLOSION. My hair blew from the air rushing through the place. It seemed to have originated from the kitchen. We looked at each other, realized we weren't hurt, only startled. He got up to check the staff/see what happened.

He came back laughing his “You're SO stupid” laugh. The pressure cooker in the kitchen had exploded. It was a MESS. Thankfully, no one was hurt. Boy, was that loud, though, and I still remember feeling the rush of pressure go through the place. That lunch happened around 20 years ago, and I still remember that day.

I think we have a tendency to remember the days that are unexpected, the surprises, anything out of the ordinary. Something that makes it stand apart from the rest, whether it be good, bad, funny or sad. I think that's why I remember that day like it was last week. It was so unexpected, surreal, and, well, fun.

Relish the unexpected. Just remember, someday, it will make a great story.

NOT a List of What Not to Say to Someone With a Chronic Disease

I've read, and even posted some of those lists “What Not to Say to...”

Today I read one that really struck a chord with me, and I thought, “Wow, do I sound like that?” If I do, I am so sorry.

We chronic illness people aren't always whiny, I promise you. If I am insulted when you mean well, it's my fault, not yours. When you say, “You don't look sick”, it's true. I really don't. I just am. On any given day, my reaction might range from laughter to tears. It just depends on the day. And it's not your fault; it's my disease. Some days I can cope with it better than others.

If you are genuinely concerned and offer some remedy you heard about, I will listen. Heck, I may even try it. I really do want to feel better, not bask in the realm of “I'm sick”.

Do I wish more people understood the disease? Yes, I suppose I do. The fact remains that despite living in a geographic area that is a perfect storm (for whatever reason) for autoimmune diseases many people are unaware. Nearly everyone I talk to knows someone (else) who has some type of autoimmune disease. No one knows why it's so common here, but it is. Despite knowing someone who has an autoimmune disease, many people know very little any given disease.

While I can't promise not to snap when I hear that I don't look sick, or I should try some voodoo cocktail, I will do my best to remember that you are sincerely trying to help. I will try to remember that you aren't being rude and thoughtless, as these lists seem to imply, but you truly have my best interests at heart because you love me. At least, that's what I choose to believe.

Choices, Decisions and Options

Today looks like a wonderful day. It's finally sunny and warming up. We've needed slickers and rain boots (of which I have neither) for the past few days, so this sunshine does wonders for my psyche.

It's still morning, and the day holds lots of promise. In my head, I'm making a list of what I want to accomplish today. It's a game I still play; making a mental checklist, even though I know I'll be lucky to get to a couple of items. I need to tackle Mount Washmore, at least a few loads. I still need to get the rest of my plants in the ground. I need to figure out the menu for the 4^th so I'm not grocery shopping on the first. I need to get sneakers for both of my kids, but that doesn't need to be done today. Soon though, because my daughter had the audacity to outgrow hers entirely. Then, figure out what to make for dinner. In another lifetime, that would only be part of a to-do list.

Have you ever stopped to think about how many decisions you make in one day? First thing in the morning, get up when the alarm goes off or hit snooze? Even before you're out of bed, you've already made one decision. Decide what to wear. Which shampoo to use, which coffee to brew. Which mug to use. Choices, decisions. Sometimes the process of prioritizing is overwhelming.

But, sitting here with my coffee (Donut Shop Dark Roast), the day is full of promise and hope. I haven't failed at anything. Yet. I haven't disappointed myself. Yet. I haven't gotten frustrated, overwhelmed, exhausted, or disoriented yet.

I hope you all have a wonderful day. I'm going to sort Mount Washmore.

One choice made.

This Girl Is on Fire

You may or may not have noticed that I didn't post yesterday, and I'm sorry. Yesterday was not a good day for my body. Every time I sat down to write, my body kept telling me how unhappy it was with me, with the weather, that it was Saturday.

A few years ago, I had no pain associated with my MS. I remember a celebrity talking about how he uses marijuana to control the pain from his MS and I thought to myself that MS wasn't supposed to be painful, then shrugged it off. Ah, the good old days when I had no personal experience with many things.

Yesterday was probably the most pain I've had from MS.

Yesterday, wow, I could have spent the whole day in bed. The weather was crummy here. That always wreaks havoc with my MS. The pain in my legs felt like a dull, achy burn. My knees were throbbing, but the inside felt much too hot and much too large to be my knees. Anyway, every time I sat down, I couldn't focus. I think I started 3 different posts.

We did play a board game last night. It was a game called TriBond, which I had never played. My son played it in school and said how much fun it was. You're given 3 words or phrases, and you have to guess the common theme. I enjoyed it, though, like Trivial Pursuit, some answers were so obscure I was tempted to Google the answer to double-check them. 

So here's yesterday's post. I still owe you guys a “real” post.

https://crazyruthie.files.wordpress.com/2015/06/orange-spray.jpg

Instant Karma

Well we all shine on

Like the moon and the stars and the sun.

I woke up thinking of that song today. Maybe it's the sunshine, maybe it's a dream I had but can't remember, or maybe it's just random. One thing I'm sure of is that I love the name of the song. I mean, who doesn't love Instant Karma?

You're driving down the road, a car comes zipping along, dangerously weaving in and out of traffic, and 45 seconds later you see a police car with lights flashing, When you catch up, there is said car, pulled over by said cop. Instant Karma.

You're at a grocery store, and a customer is rude to you or the cashier. Later, in the parking lot, you see him unloading the cart, and a bag breaks. There they are, picking up groceries from the pavement. Instant Karma.

Have you ever seen the movie “Serial Mom” with Kathleen Turner? In case you haven't, it's about a suburban mom who kills people over infractions we all hate. It's a very dark comedy, but funny as heck. In a way, I think she's exacting her own Instant Karma.

Then there are the times Karma isn't instant, or it doesn't make sense. Those are the times we're left wondering why. Why was there that terrible accident? Why does a tornado take the path it does? Why do rogue waves happen? Why, why, why?

I go for my MRI today. I'm expecting it to look something like reverse Swiss cheese. I'm not nervous about it, because it's not diagnostic, I already know. Today I am following the path of the tornado. But why? Am I part of someone's Instant Karma?

Well, we all shine on...

Take Me out to the Ballgame

I just watched the video of the where the guy got a baseball, then handed it to the small child near him. Certainly, a feel-good video, no question. I love watching people do nice things for one another. I love seeing something ordinary made extraordinary.

Things like that gesture are really special to me. I like to believe that the guy who handed the baseball to the kid did it because he's a nice guy, and it's just second-nature to do a random act of kindness. He probably wasn't thinking about it being shown on the big screen, he probably wasn't thinking that strangers from all over would see his actions, he was probably doing what he thought was right.

He probably wasn't thinking about giving the kid a lifelong memory of a ballgame, either. But he probably did that, too. He wasn't thinking that he's giving this kid a lesson in kindness, and maybe the kid will show the same kindness one day. He only gave the kid a baseball.

So, what is it about videos showing good things that makes them so special? I think that “news” is reporting what happened, and “news” seems to think that only bad things happen, at least the majority of the time. So, from a young age, we're conditioned to believe that good is extraordinary, and despicable is commonplace. I also believe the media thinks we all have schadenfreude to some degree, and they think that bad news will get better ratings. Once in a while, the news shows a good news snippet, usually at the end, after sports and weather.

Am I the only one who thinks that we need to see more of the good in people, in the world? I can't be the only Pollyanna out there.

So, keeping that in mind, today is a good day. They are all good days, sometimes punctuated by lousy moments. Today I'm happy. And grateful. Grateful for so much good.

It's out there; you just have to know where to look for it.

Love,

Pollyanna

It's Gonna Be a Great Day

Today is sunny and clear. It's going to be a wonderful day. The kind of day you hope for. My daughter volunteered me to chaperon her Field Day picnic today, and we have a concert tonight.

I bought the concert tickets months ago without giving a thought to the fact that at Darien Lake, you're not allowed to bring chairs. The tickets were lawn seats on Groupon, dirt cheap, for a band my daughter loves. It was a no-brainer. But, as the concert date drew nearer, I was really sorry I got the tickets. Which brings us to today.

Now I'm stressing over standing for 3 hours, PLUS the walk to and from the car. Will I really be able to pull this off? I think I'll pack some plastic bags or go buy the $1 rain ponchos that come folded up the size of a microchip so I can sit for a little while.

Just to make things more interesting, I'm breaking out in hives right now. The result of stress? Possibly. Claritin, don't fail me now!!

As usual, I'm trying to focus on the positive. The weather is darn near perfect. I really like one of the opening acts. My daughter (if maybe not the rest of us) is going to love being there. I'll retain the “Cool Mom” title for just a little longer. In the end, I'll probably even enjoy it.

And who knows? Perhaps I'll be able to do these things once again without a second thought. Research is evolving quickly, and medicines are being developed constantly. These things just fuel my fire of hope.

Math and I Are Not Friends

Math and I are not friends.

I'm not a math gal. Never have been a math gal, and never will be a math gal. I know it has NOTHING to do with me being a girl, it's just my personal relationship with math. Oh, I can do arithmetic, decimals, fractions, percentages, but get me to abstract math concepts and I'm lost. As a result, I don't like math.

I liked geometry, though. Which makes NO sense whatsoever, but it's true.

I can understand spatial relationships at a glance. I was an adult before I realized not everyone can. I remember one time I was going to rearrange my living room. My husband told me the furniture wouldn't fit the way I wanted it; if it did fit, it wouldn't be comfortable. I could see exactly how it would look before I did it. It was fine in the end. When we were moving back from Chicago, our friends came to help load the truck. Our one friend told me that all of our stuff wouldn't fit in the truck, but I knew it would. When we were finished, he was amazed, but then said, I should have known; you probably figured out the amount of stuff down to the cubic inch. I hadn't, I just knew.

For me, it's the same with flowers, or most any creative project. If you hand me a bunch of flowers, I can see the arrangement, wreath, bouquet, or whatever it is I'm supposed to make with them.

I think for me, it has to do with starting with something real, and ending with something real. No imaginary numbers, no negative zeroes. Flowers? Start with a bunch of loose stems, and finish with something beautiful. Furniture? Start with one layout, end with another. Gardening? Seeds to plants to garden.

This MS thing, though...mine started with vague symptoms. Sometimes the symptoms were more pronounced, but still pretty generalized. No one has pinpointed the cause, and there certainly isn't a cure...it's like an imaginary number in an equation you can't solve. Which, for me, was pretty much all of them. For someone who doesn't appreciate abstract concepts, not knowing the answers is almost as exasperating as having part of the answer. Except with MS, you don't get partial credit for showing your work.

Lessons from James Taylor

Have you ever listened to a song that you know well, I mean, you know all the words, you've sung it countless times, but all of a sudden, the words just click, and it's like you're hearing it for the first time? No? I had that happen to me recently.

I had the radio on, and “Fire and Rain” by James Taylor started playing. I've been listening to that song since I was a kid. I know all the words, I can sing it from memory, even without hearing it. I was singing it, then I was truly hearing the lyrics, and understanding them, too.

“I always thought I'd see you again”

We do that all the time, don't we? I believe it's human nature to blindly trust that we will always get another chance. The friend you mean to call, the place you want to visit, the project you want to complete. These things happen in the mythical land of “tomorrow” and “soon”.

“Well there's hours of time on the telephone line to talk about things to come”

Things to come...we always look to the future, we always assume there will be a tomorrow. Even though we say things like, “Tomorrow isn't promised”, we inherently know there will be one. One day, we'll do such and such.

While having MS is NOT fatal, it does force you to live in the present more than you did previously. Today I can. Therefore, I will. And days like that are the ones you cherish.

Happy Father's Day

It's Father's Day.

I lost my dad in 1996. He had a host of medical problems, but one thing he wasn't diagnosed with was MS. When I was diagnosed, and did all kinds of reading about it, I became pretty well convinced that my father had it, though. He had so many symptoms that are consistent with MS.

He fell, quite a bit. He had the corset pain. He couldn't walk very well. He slept a lot. He had balance issues. He got headaches. One thing that's puzzling, I don't recall him having heat intolerance. That's not to say it wasn't there, it may have been because he was one tough guy.

Of course, there's no way of knowing whether he had it, it's just my gut feeling. They say MS isn't hereditary, but that it can run in families. If you can explain that to me, I'm willing to try to understand. I had a cousin on my dad's side who passed away from MS complications in 2001. Is there a connection? Maybe. Or, it may be that my dad had a big family, and it's normal in that sample size.

Having MS is one thing. Knowing that someone who loves you desperately wants you to feel better, to actually be better is really hard some days. You want to be better for you, for them. You want it to be easier for them, for you. You don't want to disappoint them. Or yourself. Yet, somehow, you persevere, for yourself, for them, because really, is there an alternative?

So, here's to the dads who tough it out, either having MS or having someone they love have MS. Neither road is a smooth one, and we appreciate you all.

Happy Father's Day

The Pear Tree

Our house is next to a vacant lot. Some years ago, they tore down the house that stood there. When they tore down the house, they left the vegetation, including a pear tree.

The pear tree has some dangerous-looking dead branches, but mostly, it's a vibrant tree. Each spring, the leaves bud, then the tree blossoms, then the pears start growing. No one tends to the tree. It just goes about its business. It goes through its life cycle, year after year. The tree doesn't need encouragement, accolades or coaxing to bear fruit; it just does. We pick the pears when they are ripe, and enjoy the sweet fruit, juice-drenched chins and all.

Seeing the tree today, I noticed the pearlets growing. Is pearlets a word?

Anyway, I was thinking about how the tree just does what trees do, without any outside assistance, save for the wildlife doing what the wildlife does. Then, for a nanosecond, I thought I'd like to be that tree. Just doing its thing, day after day, year after year. But people are different. We all have our routines, idiosyncrasies and quirks, but rare is the person who never needs to be tended.

Don't we all need tending once in a while? Laughter with people we love, hugs, tears, music...don't all those things feed our souls? I enjoy my own company, and I sometimes need to be alone, but I wouldn't wish to live in isolation all the time. Now that I think of it, even the tree gets human contact at least once a year when we pick the fruit. I joke about not liking people, but the truth is, I generally do like people.

It's a good thing I've decided I like people, because as I'm finding out, it's really best not to be alone, just me and my MS. You have, for whatever reason, decided to come along on my journey, and I'm happy to have the company.

Later on this summer, we'll pick pears.

It's All Relative

I have a small collection of blog ideas that I look at when I don't know what to write. Usually, a post just pops into my head, and I start writing. Somehow, through all the rambling, it comes to a conclusion. Today, none of my brainstorming is working.

I don't know how the rest of you writers do it, but for me, once an idea pops into the forefront, there is no avoiding it. That idea has to make its way to paper, no matter what. I have just such an idea right now, except that it's not my story to tell, and I'm not writing it.

The thing is, I don't have writer's block, it's more of an idea blocking my writing. It's sort of like a downed tree in the middle of my idea road. You can't go over, under, or around in your vehicle, so you just need to wait for it to be cleared. The question is, how long will that take? Who knows? Or, turn around and go back to where you started.

Now, you're probably saying, “Just write it, but don't publish it.” For me, it doesn't work that way. It's not out of my head until I click publish. I wish it were that easy, but, here I sit, writing about not writing about what I really want to write about.

But isn't life that way, too? You have one thing in mind, then along comes a sick kid/car trouble/leaky faucet/blizzard, and plans change. You have an agenda, a honey-do list, and for whatever reason, you're sidelined, sidetracked, or just unable to complete what you wanted.

Life with MS is just like life without MS in many ways. We face the same external roadblocks you face. We just have internal roadblocks to deal with as well. But we Emessers aren't the only ones who deal with internal problems. I believe everyone has something on their plate, and it's not my place to trivialize someone else's problems. My problems are trivial compared to other people's, so it's all relative.

Being a Mom with MS

It's not often that I think about how my MS affects those around me. Most days I can deal with having MS. It's not awesome, but it's somewhat manageable. Then, there are the days where my kids want to do something and I'm just not up to it. Adults have a hard time understanding how someone who, by all definitions, doesn't look sick. Imagine being a kid, and trying to understand why your mom can't do as much as she used to do.

My kids are very smart. They understand so much, but they can't seem to understand when I say I'm not feeling great. I look the same as every other day. Maybe, if you look really closely, you'd notice circles under my eyes, or half-closed eyes. Maybe you'd notice I'm sitting more, or moving more slowly than usual. The signs are very subtle, and beyond their realm of my kids' understanding. Plus, there's the “it's MOM” factor.

No one wants to see their mom sick, no matter your age. My kids know I have MS, but I'm not sure what they think it means. I've talked to them about it, but it really makes them uncomfortable. I got the comic book style pamphlet from the MS Society for them to read. I gave them a page to read that explains some of my symptoms, and why “Mom just can't today”. I've tried to explain that while yes, I have MS, I'll be around for a while. Unfortunately, I don't think I'm doing a very good job. I feel like they perceive MS as this mysterious, nebulous thing that I say I have.

Summer vacation is coming. June 25^th is their last day of school. I have little things planned here and there. It is my fervent hope that once I start my medicine, I can be the Mom that my kids think they have.

My First Job

My first job was in a flower shop. I never really applied for, or interviewed for it. I had the good fortune of living next door to a friend of someone who worked at the shop, and basically that's how I got the job. I kept the job because I was a pretty good worker. I showed up on time, ready to learn and work.

I learned how to do all sorts of floral creations from boutonnieres to bridal bouquets, to regular arrangements, I learned to make bows, corsages, how to receive flowers and prep them for storage. I learned how to “green” containers for arrangements, fill mylar balloons, take phone orders and Teleflora orders. I learned how to use a cash register, straighten displays, and make mixed bouquets. There was one duty, however, that I never did quite master. That was taking care of the plants.

They had the most beautiful Boston ferns. They were hanging all over the store. We had a special hose that connected to the sink, and it reached everywhere. I'd drag out the ladder, go plant to plant, and water them. There were also rubber trees scattered throughout the store. I had to be careful when vacuuming because if you bumped them, you could send them into trauma, and they would die. They would look healthy, then you'd see a big, beautiful leaf on the floor. Then another. Until one day, you would walk in to find a bare stalk of a rubber tree that would eventually just shrivel and die. The Boston ferns were a sight to see...all lush and green, like majestic crowns hovering over us. One day, I noticed some brown leaves on a couple of the plants, so I brought scissors up the ladder to trim the dead leaves. Of about 12 Boston ferns that were there when I started, I killed roughly 100% of them. I just could not acquire the skill needed to keep plants alive. I dreaded Christmas when we would get tons and tons of poinsettias. I had to keep them alive for a month!

I probably cost my boss a pretty penny in plants. He probably could have, or I guess even should have fired me for that. He didn't. I guess he saw all the other things I could do adequately, and even well. He knew I was reliable. He kept me on until I left to find full-time work. I really didn't want to leave, but I didn't have a choice if I wanted to make more money. After I left, I even went back to help at Christmas for a few years. I guess he didn't mind all those plants that much.

So, what does this have to do with MS, you ask? Good question. I'm working on the connection as I type. For now, please enjoy this photo of a Boston fern:

I suppose an analogy would be that I used to be vibrant and healthy (but not green and leafy). Another would be that maybe my boss kept hoping I'd get better at it, much like I keep hoping I'll get better. Perhaps the most obvious is that I JUST KILL HOUSEPLANTS, and there is no connection to MS.

Maybe, it's accepting some things that cannot be changed. Or appreciating strengths and overlooking flaws. 

Orange

When I was a kid, I had an acute aversion to the color orange. I really really disliked the color. Nothing could be orange...not a folder, notebook, book bag, barrette, and especially clothing. I didn't even like variants...peach, salmon, pumpkin; they were all too close to orange for me. Through the years, I mellowed, and even started to buy some orange clothes.

Then, I was diagnosed with MS. I dutifully subscribed to emails, magazines, newsletters, signed up for activities, seminars, and groups. Slowly, it started to sink in, that a lot of the information I was receiving had orange either interspersed or SPLASHED ALL OVER. The more I learned, I found out that orange is the “color” of MS. Like breast cancer has pink, HIV/AIDS has red, MS is orange.

I hate orange more than ever.

Was I having an episode of clairvoyance or precognition when I was a kid, or did I just think it was an ugly color? I'm pretty sure I was too young to know what clairvoyance was when I first started to dislike orange, so it's probably just coincidence that I didn't like orange. Except I don't usually believe in coincidence. Am I saying I was psychic? Nope, because I sure didn't see THIS coming.

I just find it mildly amusing that a color I detested as a kid, and tolerated as an adult, turned out to be a color so entwined with MS.

image from http://awarenessbeyondart.deviantart.com/art/MS-Butterfly-363589416

Looking on the Bright Side

I posted a link to another MS blog today, and it really resonated with me. It explains why, at least to a point, I never talked about my MS publicly before. I never made it a point to interweave my MS with daily conversation. That was a separate subject I only got out for special occasions. Doctors, close family and friends...yea, that's about it. Sort of like saving your china for holidays.

I didn't want, and don't want sympathy, or pity. I'm hoping I will convey that by writing this blog as a regular conversation. Maybe this will ignite conversations in everyday life. Maybe it will show you that MS is different for everyone, and different almost every day for me. Unfortunately, I forgot my next point, so we'll have to start a new paragraph. Drat, it was a good one, too.

So, yes, I live with MS every day, and it's different many days. Today is a good day, physically. I was able to get up with reasonable ease, pack lunches, and even scramble an egg for my son's breakfast. Today isn't such a good cognitive day (as evidenced by the previous paragraph), or sight day. Still, I'm grateful for the ability to ramble about my experience.

I'm meeting a friend for coffee soon, and I haven't seen her in a few years. I'm grateful I can still go out on my own, and walk from my car. MS ain't a picnic, but I could be so much worse. It's with that attitude I try to go about my life, looking on the bright side.

Humbled and Grateful

I recently started blogging about my experience living with MS and more recently decided to share my blog with you. I am humbled, honored, grateful and surprised at the response I've gotten. The encouraging comments, the likes, the shares, and just knowing someone is reading what I'm writing has given me a greater satisfaction than I would have ever guessed.

When I started putting words down, I wondered if anyone would care what I had to say. I wondered if I should even bother. I mean, I'm just another person with MS, and, unfortunately, there are a lot of us. After the gentle coaxing of a dear friend, I decided to let you in on my secret.

I never imagined the feeling I would get by doing this. I knew I felt like I had to write, but I didn't know why. Now I realize it's such a powerful therapy, and I'm sort of admonishing myself for not doing this sooner. Only sort of.

So, thank you, from deep within my heart. I hope you'll keep reading, even on the days where I'm faltering for words, on the days where my post is more rambling, or on the days that it's really short.

Once again, thank you. Your support means much more than I imagined. 

The Day My Normal Officially Changed, Forever

October 28, 2004. The day my normal officially changed. Forever.

October 28, 2004, the day I was diagnosed with MS.

When we lived in Chicago, I had many, many symptoms. MY diagnoses ranged from gas to pneumonia, to you're fine. Clearly, I wasn't fine because I kept going to the ER. They tested me for Lupus and rheumatoid arthritis. I had what I called “pixie dust” feelings in my legs, you could see a rib was dislocated, I felt like my arm or leg was wet when it was perfectly dry, and there were days I could not get out of bed. I had headaches that wouldn't go away, I would lose parts of my vision, I was dropping things, and I could not get out of bed. One doctor actually told me, “You're a young woman. You shouldn't be this tired.” Ya think? Maybe that's why I'm here?

I figured if there was no physical cause, it must be psychosomatic. So I went to see a shrink who told me I was fine, too. So, for about 10 years, I was fine. Except I wasn't. I knew I wasn't fine, but the doctors didn't know.

So in October of 2004, we closed on our house. The day the movers came was a beautiful, bright, warm sunny day. My daughter was just over a year old, and the entire time the movers were at our place, I was holding my daughter to keep her out of their way. When I got up the next morning, my legs felt funny, like they had been sprinkled with pixie dust. I figured I must have pinched a nerve, so I thought if I wasn't better by Monday, I would go see my doctor.

Monday came, I wasn't better, so I went to my doctor. I was little surprised when she called a neurologist and sent me there right from her office. I got there, we talked, he scheduled an MRI. “So what do you think it might be?” Well, it's hard to say... “Obviously, you're looking for something.” Well, it could be a spinal tumor, but I've never seen one without pain. Or it could be MS. I had only a vague idea what MS was. I told myself not to Google anything yet, because there was probably nothing wrong, anyway. But I did. I read about MS. The more I read, the more I checked off symptoms.

Back to the office after my MRI. October 28, 2004. We go into his office, not an exam room. “Uh oh, this can't be good” I think to myself. You have MS. But you kinda knew that already, right? Well, yes, because I'm me, I had to read about it. I blurted out, “THANK YOU!” He said that was the first time anyone ever thanked him for giving a diagnosis of MS. I briefly related the past 10 years...so having a name was everything. I wasn't crazy, I wasn't imagining things, I wasn't lazy, and I wasn't faking it. That explained everything. I felt a HUGE relief. I know, it's crazy to feel relieved learning you have MS, but after 10 years of not knowing, I felt like a weight had been lifted off of my shoulders. Little did I know that I traded the weight of not knowing for a lifetime of learning all kinds of new things.

I made up my mind, that day, in his office, that MS is what I have, not who I am. I promised myself I wouldn't let this illness define me. Whatever it threw at me, I would catch, and throw it back. I did the MS walks for a couple of years. Maybe I'll be able to do them again one day, maybe not. I'll just fight a different way. I'll find my normal. Every. Single. Time.

Because, if I don't, what's the point?

Seeing Eye to Eye

I had the appointment with the ophthalmologist. Number two in the series of office visits before I am accepted into the trial, for those of you playing along at home.

My left eye is darn near perfect.

My right eye, not so much. I was not expecting to hear that my optic nerve is pretty damaged, and that is what's been causing my funky vision issues. The doctor said after so many years of optical neuritis, my optic nerve is pitted and puckered. There's not really much they can do for it. Surgery works a fraction of the time, and even after a successful surgery, your vision is rarely fully restored.

So, that explains why sometimes chunks of letters are missing, or I need to read a passage a few times or guess at the word.

On the bright side, at my age, I still don't need glasses. Even though my sight in my right eye is compromised, glasses won't help, so no glasses. WOOHOO.

Now we search for another new normal. Compensating for the (seemingly permanent) partial loss of vision, without the help of glasses or contacts.

Also on the bright side, he said that he doubts I will completely lose sight in my eye, so there's that.

It's kind of funny in an awkward MS kinda way...the first technician asked me if I ever had a lazy eye, and she kept mentioning lazy eye. It's an odd parallel, people who know nothing about MS are quick to judge people with MS as lazy. I couldn't help but think to myself, “See? It's not lazy. It has MS!”

It's a good thing I gave up the QC job a while ago, huh?

Pollyanna

I've been given many nicknames throughout my life. Perhaps the kindest is Pollyanna. I'm the one who always looks on the bright side. If I'm not mistaken, it was first coined in my early twenties by a coworker. That was a bipolar kind of job; I had one coworker calling me Pollyanna, and another who would hum the theme of the Wicked Witch when I walked by. I actually liked hearing dodododododoooooooooo as I walked into the shop, though he thought I was upset by it. I let him think I was mad; it made him feel better to get mad.

My primary responsibility at that job was QC, so if there was something wrong with something I inspected, it was my job to take it back to the shop and ask the guys to fix it. I liked it when he would hum that song; it meant I was doing my job well. He didn't see it that way; I was creating more work for him by making him do something he'd already done. No matter how many times, or how many ways I said that if it were done right the first time, he wouldn't see my face, he just did it to get it done. What did irritate me was that he was good at what he did and was capable of so much better. Looking back, I wonder if did it to see it he could “get away with it”, or if he really cared that little.

My way of thinking has always been that if you don't have time to do it right the first time, you certainly don't have time to redo it. Many of the guys at that job didn't feel that way. In fact, I've found that many people do things that are “good enough” as opposed to doing it well the first time. Maybe that's where I honed my perfectionist tendencies, and my performing well at the last minute. Or maybe it was at the flower shop, where you had one chance to get it right. Anyway, though I understand people are different, I couldn't understand why the guys didn't see things my way.

I'm big on trying to understand the why of things. I rarely figure it out, especially when it comes to people. “Why did he say that?” Why did he do that?” “Why isn't this done?” Why? Maybe focusing on the why allows me to get past the fact that it was done or not done or said in the first place. “Why do I have MS?” I ask not in the spirit of “why me/poor me”, but why, as in what triggered the biological response inside of my body that caused my immune system to see “normal” cells as something to attack.

I'm still wondering why I decided to start blogging again. Maybe focusing on the why will let me see past the actual blogging part. Maybe.

Until next time, I will ask you this:

Why?

You Adapt to How You Feel

I keep telling myself not to wade in too deep, lest I become totally immersed in MS. Then I tell myself to get real. I can't really get any more immersed, I mean, I have MS, I live it every day. Then I tell myself that's not what I meant. Yes, I have entire conversations with myself. You see, it's a slippery slope, talking about MS. I make light of mine, because that's how I choose to deal with it. Other people have MS much, much worse than I do, so I would imagine it's more difficult to live with. I'm not trying to undermine the seriousness of the disease, but for me, laughter is an essential vitamin, like chocolate and coffee.

Talking about MS can be draining. It forces you to examine every single part of your life. Every new symptom you feel makes you wonder if it's something else, or “just your MS”. That, too can be detrimental. Blaming everything on MS sometimes stops you from seeking medical attention, because you figure it's just something else you have to live with. There is no cure. MS is incurable. Those are phrases I really hate, no matter how true they are.

As the disease progresses, you adapt to how you feel. Remembering the you that you used to be is painful. Your normal changes all the time. Some days, normal is hoping you have enough energy to pack your kids' lunches. Some days, normal is laundry, grocery shopping, and going out for ice cream. You never know what the day holds, or what your body will dictate until you are in the throes of the day. Plans? Well, I can make them, but I may not always be able to fulfill my obligations. So I stop making plans. Thankfully, I have some great friends who don't give up on me, no matter how many times I have to cancel at the last minute.

MS is what I have, NOT who I am, but talking about it so much sometimes makes it feel the other way around. So , I hope you'll pardon me if I stray off of the subject sometimes, because there is so much more to me than MS.

I let my mind wander, and it went astray...

You Used to Be Much More Muchier

Yes, I have MS. To paraphrase one of my favorite movie lines, I used to be much more muchier. I could do crazy things like spend an entire day walking around at the fair or the mall. I could work a 16 or 18-hour day. I could dust and vacuum my whole house in a short time, in between loads of laundry. I could grocery shop, bring in the groceries, put them all away, make dinner, and still have energy to go somewhere after dinner.

Back when I was muchier. 

Now, if I walk my son to school, just a few blocks away, I need hours to recover. Going to the mall fills me with terror. Okay, terror is a really strong word. The only time I really go to the mall is when my daughter wants to go, like last week.

It was her bestie's birthday, and we ordered something online, but she wanted a “keepsake” gift to commemorate this special age. I was full of anxiety as I parked, because I wasn't positive the store we wanted was by that door, and the thought of walking the entire mall, and then back again made me want to vomit. Or nap. I got really lucky; the store was right there, so it was a quick in and out. Some years ago, it wouldn't have been an issue. These days, I subconsciously count steps and figure distance. I have to factor in the return-from walk, not just the walk-to walk.

So, yes, I have MS, but each day I remind myself that today, I can still walk. Today, I am tingly, but I still have use of my limbs. Today, I have MS, and tomorrow I will have MS. But so far there is not a day that MS has me.

Yesterday's Three Hour Tour

At my last neurologist's visit, my neurologist suggested that I try to get into the study they are conducting about MS drugs. They are comparing medicines already on the market (and approved for human use) to each other. This study compares 2 different doses of an oral drug to an injectable. I haven't tried either one yet, so I'm hoping that the meds in this study help me.

There are several steps I need to complete before being accepted. Step one yesterday was a 3 hour appointment that included neurological exams, cognitive exams, vision tests, lots of gawk and walk (I walk, while the professionals gawk), lots and LOTS of questions (including questions about suicide- which if you were already predisposed, this call would definitely induce second thoughts), an EKG, and lab work. Yes, it was as much fun as it sounds like!

During one of the walk and gawk sessions, I had to walk heel to toe, much like what you see in a field sobriety test. Well, I will never drink and drive, because I failed that part sober. My balance is really, well, off-balance. I'm glad I found that out in a clinical setting. Not that I drink and drive, but if I'm ever suspected of it, I would certainly flunk.

I saw two different doctors, One knew I had MS, the other was a blind doctor, the research term for a doctor who doesn't know whether you have MS. When this was being explained to me, I likened my time with him to visiting a psychic...I would confirm or deny, but not volunteer any information. Considering he supposedly didn't know whether I had MS, he certainly asked questions like he already knew. Electric shock sensations that start from your neck and radiate outward? Yes. Paresthesia? Yes. Tingling? Yes. Fatigue? Oh, GOD yes.

After the three-hour tour of yesterday, I (only) have 5 different appointments before the ultimate goal of medication randomization. That's the appointment where they draw from a hat (figuratively) to see which medicine I will be on for the next year. I wouldn't be completely truthful if I didn't say I was a little nervous. More anticipatory than nervous, but there is that tiny bit of anxiety. My mind wants to play “what if”, but I am trying to suppress it best I can.

Onward and upward, right?

More Luck Than Talent?

The same friend who gave me the advice about writing from the heart told me that blogging can be difficult; creating a new post every day can be daunting. While I don't entirely disagree, I propose that it's easier when you aren't talented. You see, my friend is a very talented writer. Her writing is highly enjoyable, no matter the subject. My writing is more like drunken rambling, but that's how I talk. I jump subjects without warning, I laugh inappropriately, and I talk like I'm brainstorming. That's who I am; when one thing reminds me of another, I go with it. I can't really say how much is from my disease ravaging my brain, or how much is my personality. Or my brain being ravaged affecting my personality. Who knows?

I have MS. I've been diagnosed since 2004. When I was newly diagnosed, I voraciously read everything I could find, despite my neurologist instructing me not to. “Don't get on the internet and read all about it. You'll scare yourself.” He didn't know me then, after only 2 visits. I didn't want to read all about it, I needed to read all about it. I had to know if all the weird symptoms I'd experienced through the years could have been caused by MS. Paresthesia is a fun symptom. There are many different sensations caused by paresesthesia, including feeling wet, or feeling something crawling on you. We play a game called “Is It Really Raining, or Is It My MS?” Other sensations include feelings of electric shock, burning, and prickling.

But I digress. I'm not a talented writer. I like to write, and occasionally I write something fun to read, but that's more luck than talent. So if you're still in the car riding along, you'll see the good, the bad, and the ugly. There will probably be posts that even I don't find interesting, but I will suppress my inner perfectionist and share them anyway. That post may speak to you. It may tell you to stop reading my blog, but I hope not.

One day I'll share my friend's blog with you, but not yet. I'm still trying to recruit readers, and I can't chance that you'll leave me for something better.

Write from Your Heart

I got some good advice from a dear friend of mine yesterday. She told me to blog what's in my heart. In my heart. My heart, unlike my mind, is a clean, open and uncluttered area, full of love. My heart doesn't have those pesky thoughts clouding things, blurring things, and generally wreaking havoc. My heart knows what it wants, feels what it wants, and when I'm smart enough to listen to it, it tells me what I want.

My heart, I like to imagine, is where my intuition resides. I know the adage is "go with your gut", but I feel intuition is pure. My intuition, when I'm smart enough not to ignore it, hasn't ever been wrong. My heart, or intuition, knows what's good for me, what's best for me, and what's right for me. It may not be what I want to hear, but it's always what I need to hear. Like yesterday, my intuition, or heart, or whatever that little voice from deep inside is called, when I decided to start blogging again, it was a very sudden idea. Yesterday, just like that. I opened the blogger dashboard, saw my account, and started a new blog. Why? Who knows. Maybe it's just what I need. Whether any of you think it deserves to be read, well, I'd be happy if you do, but I'm still going to write. Write what's in my heart.

And so it goes.

Introducing...me

You are welcome to accompany me on this haphazard journey through my life. Some days, there will be rambling posts about nothing in particular, some days there will be posts that will aspire to be profound, some days I may whine about feeling crummy, and some days there won't be anything at all.

This will be most like an online journal to save my thoughts for posterity, for my kids to read one day, and for you to laugh at, cry with, agree or disagree. Mostly, it will be to get the things I never say out loud out of my head.

I titled this blog "Trying to Find My Normal" for a multitude of reasons. My normal is very different from my normal of 15 years ago, 20 years ago, and even 5 years ago. I have never felt "normal", or average, even though by most measures, I suppose I am fairly average. Interesting sometimes, funny sometimes, but, fairly average.

My normal has been altered in many ways. I went from being a workaholic to a stay-home mom. I'm trying to cope with life-force sucking diseases while being a wife and mom. I'm a stay-home mom because of these life-force sucking diseases, and that was a huge adjustment all those years ago.

To illustrate a glimpse into my normal...

Today was a glorious day. Sunny and warm; the type of day you dream about during a January snowstorm. I planted seeds a while back, and today was to be the day I put the seedlings in my gardens. We planted a new hydrangea the other day, and I noticed it was quite droopy, so I got the hose to water it. I watered the plant, put away the hose, and that was it. I had depleted my energy stores justthatquickly. I was done.
I despise having to rely on anyone else to do things for me. Yet, in this normal, it's become a daily occurrence.

I'm entering a clinical trial for medicine that just might help me regain some of my me. I welcome the chance, because I miss the old me. Yes, some of might be that I'm getting older, but I don't think it's all due to aging, especially because I'm not old yet.
Anyway, this has been a glimpse of my psyche for today.

TTFN