Buy That Stuff!!

Valentine's Day is coming up. There's no way you can miss that fact if you've been in any type of retail setting at least once since Christmas, and in some cases, before Christmas. Every store is inundated with pink and red hearts, and candy companies have changed their packaging for Valentine's Day.

 

“Love more. Spend less” says one advertisement. I dislike that ad so much, because it implies you have to spend money to love, or show your love. “Spend nothing, love more” is way better, or at least I think so.

I'm headed down the curmudgeon path for a while. Don't say you weren't warned.

In my house, Valentine's Day, Sweetest Day, even to some extent Mother's Day aren't important to me. Or even considered “real” holidays. Okay, maybe my first Mother's Day was important. Anyway, definitely Sweetest Day and Valentine's Day are what we call “Bonus Days”. My kids like to make a big deal about Mother's Day, but I really don't. I don't decorate for Valentine's Day; mainly because I don't like pink. Or hearts.

I was going to write about how Valentine's Day has taken over as a gift-buying necessity, but as I was looking for pictures to use, I found a bunch of vintage ads for Valentine's gifts. I don't mean vintage from the 90's, I mean from the 40's, 50's and 60's. Granted, I have no first-hand knowledge of those decades, but from what I saw in the brief time I was looking for photos, it seems like the only difference between then and now is the amount of time available to buy Valentine's gifts. And maybe the number of choices.

1963

So there goes that post.

I suppose I'll just elaborate on what I mean by Valentine's Day being a “Bonus Day”.

In my house, if we don't get something for the other person (even a card), it's perfectly all right. There's no animosity or passive-aggressive behavior from either person. We prefer to show our love to each other or give gifts to each other when we want to do it, not on days designated once or twice a year by...who?  If one of us gets something for the other person, it's a bonus, but there's no pressure to reciprocate.

Some of you do celebrate Valentine's Day, and that's cool, we just don't do it here. Oh, I might make a heart-shaped meatloaf, or get little candy trinkets for the kids, but that's about it. Then, I might not get the candy trinkets or make the heart-shaped meatloaf.

Sometimes, I'll get gifts for St. Patrick's Day. We have an Irish import store fairly close to the house, so maybe I'll buy mugs or key chains. I have a few decorations with shamrocks on them that I'll hang up (if I remember where I put them before the holiday). I'm more apt to celebrate that day than Valentine's Day, probably because my husband and I both have Irish ancestry. Not that St. Patrick's Day really celebrates Irish ancestry, but Valentine's Day didn't start out as a day of celebrating love, either. You can read about Valentine's Day here, and St. Patrick's Day here, if you choose.

So, that's my take on Valentine's Day and St. Patrick's Day. What do you do for Valentine's Day? Do you have any obscure celebrations (like my St. Patrick's Day gift-giving)? Let me know in the comments! I'd love to hear about them!

Visitors

I've always believed in signs, harbingers, omens, and that everyone has some degree of clairvoyance. I subscribe to the theory that as we grow older, we gradually turn off our ability to read these things. I don't think the signs stop showing themselves, I think we stop looking for them or being receptive to them.

Once in a while, I have a dream with a common theme. I call it my face dream. In my dream, I'm always looking in a mirror, and there is always something wrong with my appearance. I've dreamt that my face was coming apart (like the investigator in Poltergeist), I've dreamt that my hair was falling out, my teeth were falling out, I was disfigured, and I've dreamt that I just didn't look like myself. I've had dreams like this for as long as I can remember, and the odd thing is that I remember the dreams in fairly vivid detail. Some of these dreams I'm describing happened 20 or 30 years ago.

Here's where I might lose you (if I haven't already).

Every time, and I mean every time that I remember having dreams like this, something happens within a week or 10 days. I started to get the notion that these dreams might have a meaning when my Aunt Gert passed away. I'd just had a fairly disturbing dream, and we got the call about my aunt. I really understood that the dreams were a portent of something when we moved to Chicago.

I will never forget telling my husband (who wasn't my husband at the time) that I had a face dream. I was explaining the dream to him, and we got a call that my nephew had and accident involving a remote-controlled boat. Seems my nephew was working on this boat, it started to take off, and he grabbed it. He didn't realize he was grabbing the propeller, and the propeller was spinning. I won't go into all the details, but he required neurosurgery because of that accident.

My husband, who was an extreme skeptic (and to a degree, still is), started seeing the correlation, too.

What I find odd (yeah, okay, all of this is odd, but I find this odd-ER)is that I don't have the dream before every incident, or I don't remember having the dream before every incident.

I've been noticing some unusual behavior in birds, though.

We have a covered front porch that goes all the across the front of our house. It's a rather pleasant place to sit with coffee. Sometimes, the birds will land on the rail of my porch while I'm sitting there. Though my porch is pleasant, it's not terribly large so the birds are landing within a few feet of where I'm sitting. I don't have a bird feeder out front, so really, there's no good reason for them to stop and say hello. Yet they do. One time, a dove landed on the rail of my back deck while I was out there.

I believe the birds are visiting me, and I also believe they are the earthly embodiment of my loved ones. Have visiting birds replaced the face dreams? I suppose I will know in time.

By the way, I've experienced all of these things. 

I've previously written about other experiences here.

That Day Isn't Today

I believe I've mentioned before that my house is not palatial. Far from it. The house itself is a decent size, but the rooms are small.

Basically, space is at a premium here, probably just like at your house.

I caught a glimpse of my horoscope today, and it reads, “You're not willing to let go of a piece of your past, even if you would be better off without it.”

There's a connection, I promise.

I have my mother's clothes here. All of them.

When she had to leave her assisted living facility to go into the nursing home, I packed up all her clothes and brought them here, with the intention of taking them to her when she got a permanent room with more space. Sadly, she didn't last long enough to move to her permanent room. And here her things sit.

I have other things here, too, from when my mom lived here. I don't think I told you; my mom lived with us for about a year before she went into assisted living.

I can't bring myself to take the clothes away. I can't bring myself to touch the things my mom touched, the things she wore. In my head, I know there is absolutely no connection between what is left in my house and what is left in my heart. Still, it feels wrong to just get rid of everything, like a betrayal of sorts.

I suppose most everyone goes through this when they have the belongings of a loved one who is no longer walking among us. In this instance, misery doesn't really care about company, meaning it doesn't make me feel any better to know I'm not alone. I imagine that once I'm actually able to go through these things and donate things, I will feel somewhat better. It just feels wrong for me to be the one to do it. I know I'll be helping someone by donating these things, which will be a boost for about 5 seconds. Then I'll remember why I'm donating these things. And I'll cry. Again.

Perhaps psychologically, it's like having my mom go into assisted living all over again, or something like that. Another letting go, another good bye, another way I failed. Reliving all of it, from the very beginning to the very end.

I hope one day the hurt will be more of an ache, and I won't be sobbing when I talk about my mom.

That day isn't today.

Do You See What I See?

We had a spectacular sunrise this morning. It was vibrant, and full of color. There were pinks, oranges and yellows; it was quite lovely. I decided to take a photograph of it, so I could share it with all of you.

This is what I got:

It's kind of dull, isn't it? I mean, I thought it was spectacular enough to take a picture and share it, and my picture turned out like that. I suppose if I enhance it,

the picture will look better, but you still won't see exactly what I saw (unless you were lucky enough to see it in person). Even if you were lucky enough to see it in person, you will get a different feeling or impression from it than I got.

For example, people driving eastbound toward the sunrise may be cursing the fact that the sun is in their eyes, blinding them. People driving westbound can only see the sunrise in their rear view mirrors. It might be distracting to them, or they might be wishing that they could get a better look at it. People driving north-south routes might be enjoying it, or they might be annoyed that the sun is in the very corner or their vision where sunglasses aren't. Some people driving in all directions might be as infatuated with it as I was.

Everyone has a different experience with a sunrise. It is the same for MS. And life.

I can explain MS to you. I can tell you what's happening medically, that the covering (myelin) of the nerves in my brain and spine is being eaten away by my own body, causing me to have all of the weird symptoms I have. The myelin is like the plastic outer coating on an electrical cord. Once that coating is removed in some spots, your cord will short out, maybe spark, but the result is it won't work the way it's supposed to.

I can explain what losing the myelin does to me. It causes fatigue, phantom feelings like wetness or hotness, tingling, memory problems, cognitive problems, tremors, pain, headaches, vision problems, heaviness in my limbs, itchiness, swallowing problems, and more.

You will comprehend all the words I've used. You understand it on an academic level. However, unless (Heaven forbid) you have MS, you won't truly understand how it feels. And that's perfectly fine. But please don't tell me you understand how I feel. You don't. You will try to compare something that happened to you in an effort to show me empathy. Please don't. You might tell me I could have it worse, and you'd be right, but that doesn't diminish my experience. Please resist the temptation. 

Additionally, if you do have MS, your experience will be different from mine. You will have different symptoms and different severity. We are lucky (sarcasm doesn't translate well into written words) to have a Snowflake Disease, meaning it's different for everyone.

So, we have an incurable disease, that no one knows why we have it, what causes it, and is different for everyone. Most autoimmune diseases are like that. And no one knows why they are different for everyone. But by your definition, we don't look sick!

This is what it looks like outside now:

Lightly snowing and gloomy.

This is exactly how autoimmune diseases work. You're all vibrant and sunny, then, in the blink of an eye, you're gloomy and unpleasant. Later, you might be back to being sunny, or you might turn into a blizzard, with everything shutting down. The fun (again, sarcasm) part is that you don't know how the day will unfold, if it will be the same tomorrow, or if you will be walking in a year.

This is why it's hard to make plans in advance, even throughout the day. I've given up making lists of what I want to accomplish today. Some days, it's drinking coffee and reading. Some days, I can manage to do some laundry. Some days, I can do a lot. Well, a lot for me, maybe not a lot for you. But, I have to be concerned whether I'll need to recover from days where I do a lot. Will I be worse for a few hours (days, weeks?) after pushing myself? Sometimes I will risk it, and sometimes I won't.

It can change in the blink of an eye.

Not a New Year's Resolution

Yesterday, my daughter informed me that she wants to try being a vegetarian. She's tried before but always succumbed to meat. I didn't remind her of that, I just said okay, and asked her what she wants from the grocery store. She also told me that she wants to start eating healthier. I'm good with that. So when I go grocery shopping, I'll be getting lots of greens, tomatoes, carrots, mushrooms, cucumbers, broccoli, cauliflower, and the like. I'll probably buy some tuna so I can have an alternative to the PB&J sandwiches in her lunch.

My problem is that she used the dreaded “D” word: diet.

I didn't lose it (outwardly), I didn't go off on a tangent about how girls have a really skewed self-image, I didn't tell her that she doesn't need to diet, I didn't tell her any of those things. I started off with, “diets don't work”.

Of course, she asked why I said that.

I explained that “a diet” is a temporary change in eating habits. I told her that if she's really interested in eating healthier, it should be an actual change. I told her to cut back on junk food, and eat less processed food. I told her to make some small changes, rather than a wholesale, radical change. Then I realized, hmmm, I just gave some good advice to my daughter that I should heed.

I don't intend to become a vegetarian, but I am going to eat less processed food. Notice that I didn't say I'd eliminate it. I know that just isn't possible for me. Eating more vegetables, that's possible. Eating more fruit? Totally doable. Eliminating boxed mac-n-cheese? Ain't gonna happen permanently.

It shouldn't be too difficult. We only have soda in the house when we have parties. We all like to drink water (though mine runs through coffee a lot). We're not big on fast food. We go to Wendy's maybe two or three times a year. We do like our pizza, though. Will I try the pizza recipe with the cauliflower crust? Probably not. Once in a while, we'll probably splurge with a real pizza, but not once a month. Once in a while.

I'm not sure how long my daughter will be a vegetarian; it may be a day, a week, or a month. It may be permanent. I will always support her choice, as long as she doesn't use that “D” word. Ever again.

A View from the Other Side. Sort of.

Before I was diagnosed with MS, and sometimes even after I was diagnosed, my husband and I would get into arguments about (what he perceived as) my lack of contributing to the household. Cleaning, stuff like that. Aside from MS, I also have hypothyroidism, migraines, and pernicious anemia. Save the migraines, which have their own issues, all of these things cause fatigue.

My daughter was one-year-old when I was diagnosed with MS, and we had my son when my daughter was 2 ½. Thankfully, we managed to get my daughter toilet trained before my son was born so we wouldn't have 2 kids in diapers.

Here I was, fairly new to the MS thing, fairly new to being a mom, fairly new to being a homeowner, and utterly exhausted. Being a new mom is really hard, even when your babies are “easy”. You have this little person who depends on you for everything. Everything. Having two little people depend on you when you can barely take care of yourself is indescribable.

My daughter slept for huge chunks of time at 6 weeks. I remember the first time she didn't wake up during the night, I listened to the baby monitor, but I couldn't hear anything. I stood in the doorway of her room, staring at her for several minutes to make sure she was breathing. It was awesome and terrifying. She slept at least 6 hours at a stretch early on. Foolishly, I expected the same from my son.

I never used a pacifier with my daughter. I didn't want to because I figured it was just one more thing I'd have to take away.

When my son didn't sleep for more than 2 hours at a time, I desperately wanted him to have a pacifier so he could soothe himself back to sleep. I was nursing, so there was no “fixing a bottle” and rocking him to sleep. But he refused to take the pacifier; he wanted food.

Let me also say, during this time, my husband worked the midnight shift; eleven at night until seven in the morning. Even if my son was being bottle-fed, I was still the one who had to get up with him; there was no one else.

My daughter, as little as she was, was a big help to me. When it was time to change a diaper, she would get everything I needed. When it was time to get my son dressed, my daughter would pick out his clothes (my daughter started to choose her own clothes at a year and a half). She would save me countless steps.

Then there were the little disasters that inevitably come with having kids. I remember one time, my daughter decided to squeeze the entire bottle of baby powder all over the living room. Another time, I was in the kitchen, and I thought, “why do I smell sage”? She had emptied the entire jar of sage all over the bottom of the cupboard. Once, she decided to have some O's as a snack (her name for Cheerios) and emptied the entire box while pouring a bowl. To this day, that's why I keep my cereal on top of my fridge.

Once I switched my son to bottles, of course, the bottles had to be washed constantly, and because we didn't have a dishwasher, I boiled the nipples to make sure all the crud was out of them. There was formula to be made, food to fix for both kids, clothes to wash (of course, I washed all of their clothes separately because I used a different detergent for their clothes and treated the stains so I didn't constantly have to replace clothes).

So if the TV was dusty, or the toys were everywhere, I really didn't care; I didn't have the energy to care, much less do anything about it.

That's my side.

My husband's job wasn't always physically demanding, but sometimes it was. He does work hard and always gives his best. He's conscientious and reliable. When he got home in the morning, he'd sleep for a few hours, then he'd get up, hang with the kids, or clean, or something. Sometimes, I'd use that time to grocery shop so I didn't have two small kids with me in the store. My husband takes care of the yard, the shoveling, does lots of stuff inside the house as well, and I'm very grateful. But once in a while, we'd argue about the toys being everywhere, the dust on the TV, dishes in the sink, and why couldn't I do those things so he didn't have to. After all, he worked.

It took years for him to truly understand what I was dealing with, and he lives with me. No matter what analogy I used, what description I gave, it didn't really seem to sink in. Maybe he was fighting accepting my diagnosis because he didn't want it to be right or true. I guess you'd have to ask him.

I don't want to give you the impression that my husband is an insensitive, demanding jerk. He is not. My first point is that someone who lives with me couldn't see or understand how much I struggled to do “normal” things, like taking care of the kids and the house. He knew I wasn't being lazy, he just couldn't understand why I couldn't “do it all” like I used to. After all, I looked great.

My second point is that even when you live with someone, it's not easy to see everything. Sometimes it's like that last Christmas decoration. You've looked at it for so long, you just don't see it. Then it's February, and you realize there's a wreath, or poinsettias still adorning your door or sitting on your counter. You don't see the flaws, the cracks, or weaknesses in the person you love, you only see the person you love.

Part of it was my fault; I wouldn't be completely open about what was really wrong with me, or how I truly physically felt. I didn't want to be a complainer or always have an ailment. Now I realize that I should probably have told him all the things that I deal with all the time and the things that I deal with some of the time. Thank goodness he stuck with me long enough to learn that one of my weaknesses is trying to fake being strong.

Adapting. Again.

My body is in revolt today. I'm not sure what it's revolting against today, but many parts of it are screaming at me, much like protesters chanting for a cause.

It's easy to blame the weather; the cold sinks deep into my bones. But I don't think that's the only reason. I mean, I know the headache is from the weather, but the rest of me, I'm not so sure.

I hurt. A lot. All over. Which is really unusual for me to hurt all over. I took some ibuprofen, so we'll see if that makes a difference. If it's from the MS, the ibuprofen won't help at all.

I've noticed something new, too. My right hand is freezing. From my wrist to my fingers, it feels like I've had it in cold water. My left hand is “normal”. I should mention that I'm right-handed so that hand usually isn't very idle. Or, it's less idle than my left hand. My hands are normally cold, but I can feel how cold my right hand is. It's odd.

My brain has extra fog and I have less energy than I've had in a long time. Though I went to bed early last night, I'm sure if I laid down, I would fall asleep.

My kitchen window is still full of Christmas. The boxes are sitting on the dining room table, waiting to be refilled so my husband can put them away until November or December. Waiting. For me to take my things out of my window.

I really don't like complaining, especially because no one wants to hear it and it doesn't do any good, but I thought you deserved an honest assessment of what's going on. I'm not feeling very Pollyanna-ish today at all. About the best I can muster is that I'm still walking.

Not So Far from History

I'm always so grateful to hear my furnace kick on when it's this cold. When it's really cold, it seems to take longer to start, and I hold my breath until I feel that rush of warmth pushing through the registers.

Sometimes while I'm holding my breath, I think about pioneers; the early settlers who decided to start encampments in places like Buffalo, Maine, or North Dakota. The places that get lots of snow and bone-chilling cold. What made those first settlers decide, “sure, we can live in 7 feet of snow”?

I know some places started out as military outposts; they built forts in strategic places, but what made them stay? What makes us stay? We have the modern conveniences of electricity, automatic heat, insulation, and supermarkets. Those early people did not have it so easy. They chopped wood to build shelter, they chopped wood for heat, they had to hunt for food, and during the winter, there were no fresh fruits or vegetables. Heck, even during the summer, fresh fruit wasn't plentiful like it is today.

Oh, I know they dried fruit and cured meat; they needed food to make the long voyages to where they were going. What I mean is that they couldn't go to Wegmans to grab oranges, bananas and the like.

I was just reading some brief history about Fort Niagara, the fort that is closest to me. Pretty normal stuff pertaining to military outposts, but there was an interesting incident they call “The Morgan Affair”. Quite the little mystery, that is. Essentially, Morgan spoke out against the Masons, was kidnapped and held prisoner at Fort Niagara. Then he disappeared. Masons claim he left while anti-Masons say he was murdered. You can read more here if you'd like.

But I digress. I always digress. I'm just a digress-er from way back, aren't I?

What I'm getting at, is, even if I were completely healthy, I'm pretty sure I would have never made it. If I were in the Donner Party, I think I'd have been lunch, or perhaps brunch. I don't like the cold, or the extreme heat. Pioneers didn't have climate control. They didn't have regular access to coffee, and if they did, making coffee was a job in itself. Most families got their coffee green, roasted it themselves, and if they didn't have anything to grind the coffee (meaning a handmill, not an automatic coffee grinder like we have), they had to pound it with a hammer. Here are some interesting tidbits.

Yea, I know, I'm comparing modern me to hypothetical pioneer me, and it's really not an accurate or fair comparison. I suppose if I were raised having it (what I think is) really hard, I'd be accustomed to it, and get through it because I wouldn't know any different. I come from sturdy stock, as my mom used to say. My mom's side hails from Ireland and Italy while my dad's side is from Germany and Poland. My parents, grandparents, and great-grandparents (who I never knew) were all strong, resourceful and resilient.

I guess it's possible some of that trickled down to me, too, but I like being a city girl with all of my modern things. I complain about grocery shopping, not chopping down trees. I complain about slow internet, not snow coming through the spaces in the walls of my cabin where the mud fell out. I complain about dogs barking, not a bear raiding my larder. I choose my laundry products carefully so they aren't too scented, I don't have to choose the best rock on the river bank.

I wonder what pioneers would think of how easy we have it (at least how easy I have it)? Would they be amazed? Disgusted? I suppose just like modern us, some pioneers would be amazed, some would be disgusted, and some would be totally confused. In that respect, we're really not so far from our history.

Reaction Time

A faithful reader who is also a dear friend of mine replied to my post from the other day where I said that I was having trouble organizing my thoughts. She suggested an idea for a topic that I've been mulling over ever since I read her email. Her idea was for me to write about how my mom reacted when I told her that I had MS.

My mom had a tendency to react nonchalantly to major/sad/important news, at least outwardly. Looking back, if you told her something that didn't ignite that Irish temper, you weren't completely sure what she was thinking. If it was very joyous news, then she was happy right along with you, but telling her about a “crisis” didn't elicit much of a response.

I never really realized that until now.

The last few years when we told her certain things, we expected tears or sadness, but we got...nothing. And we were always puzzled by that. It kind of seemed as though she was uncaring, which is the polar opposite of the kind of person my mom was. We would rationalize her reaction, dissect her reaction, and replay her reaction. I guess my mom had to store the news away until she could deal with it on her own terms.

So, going back to my mom's reaction when I told her about my MS diagnosis, I don't really remember how she reacted, probably because it was a non-reaction.

I'm guessing the worst possible scenario was playing through her mind. I had a cousin on my dad's side who had MS. My cousin was confined to a wheelchair; he had a severe case. I'm sure my mom was thinking of my cousin and picturing that fate for me when I told her.

To be honest, 2004 was quite a while ago, and beyond the visit where I received the name for all of my mysterious symptoms, it's kind of a blur. I remember sinking to the depths of despair thinking about my daughter, and the possibility that I would pass this on to her. Of all the things I hoped to give her, teach her, and show her, MS certainly wasn't one. I still get concerned about my kids when they get weird symptoms, but it's not as pronounced as it was back in 2004.

I remember having the debate of who I should tell, and who didn't need to know.

In subsequent years, my mom would ask some questions, but I don't think she really understood what MS was for me. Heck, all these years later, I don't even understand what MS is for me. Years ago, I didn't have actual pain in my legs, but they would feel verrrrrrrrrrrrrry heavy. I would shuffle/stagger/stumble while walking, and she would always ask me if my legs hurt. I'd say that they didn't hurt; it was more like having 50-pound weights attached to each leg while walking through hip-deep mud. People with MS will know exactly what I mean, and people without MS will sympathize, but won't truly understand.

And that's okay.

It's really not anyone else's responsibility to know how I feel. I go back and forth about what people say, how they say it, and how I react. Sometimes when I hear “you don't look sick”, I'm okay with hearing that. Yet sometimes, I want to scream. I guess I'd just like the world to understand that “looking sick” is different for everyone.

The Writing Is on the Wall

There is something uniquely satisfying about sitting down with a pen and actual paper when you start to write. The blank paper waiting for your specific combination of words, daring you to fill it up is both daunting and exhilarating. To a much lesser extent, the virtual page does that, but there's honestly no feeling like holding a pen and writing your thoughts. I miss those days sometimes.

I used to have really nice handwriting. Well, I liked the way it looked, anyway. It was a combination of cursive and printing, but totally legible at all times. I wasn't the girly girl who dotted her i's with hearts, but I did deliberately morph my handwriting over time, trying new styles.

Then I pick up a pen, start writing on real paper and realize that my writing is really terrible. Like this morning. My daughter was absent from school yesterday, so I had to write an excuse note this morning.

Part of my problem is seeing clearly enough to write. My hand and the pen cast shadows, making it difficult to see what I'm writing sometimes. Depending on the light, I also get a glare from the paper. Writing an excuse notes after the kids are absent takes a while, if I want the teacher to be able to read what it says.

Then, there are the multi-page forms. I dread spring, because my kids are involved in an amazing program through Cradle Beach called Project S.O.A.R. I don't dread my kids being in the program, but each spring, they get a form to fill out for summer camp. Each form is the size of a pamphlet, and I need to fill out 2 of them, one for each camper. By the time I get to the end of the second form, I want to call Cradle Beach and apologize for my writing.

I'm not sure exactly when my writing got so bad. I'm also unsure whether it's because of MS or if it's a use-it-or-lose-it kind of thing. I just don't write with a pen nearly as much as I used to. I write fewer checks, fewer addresses, and no real correspondence. But, as I said, my writing does worsen fairly rapidly. These multi-page forms look fabulous when I start, but by the end, my writing looks like scribbling.

I'm leaning toward it being from the MS because, believe it or not, I get fatigued doing these forms. Yes, I know, it's just writing, and your wrist barely moves, but something doesn't have to be physically demanding to be fatiguing. Being taxed mentally can cause your body to shut down as well.

I never really thought about this before today, and now I feel as though I should be going through older things to check the progression of my writing. I probably won't, but I feel like I want to. It's just another way that MS worms its way into your everyday life, and sometimes it's so subtle that you don't even notice.

The Struggle Is Real

I don't know if you've noticed, but I've been struggling to post every day, even when I want to. It's not writer's block; I can always think of something to say. Most times I can even stretch saying nothing into a page or two. The problem I'm having lately is that I have a billion and four things to say and no discipline/capacity to organize the thoughts into blog entries.

I don't want to end up writing bulleted lists; there's always a list floating around. “10 Things Not to Say to Someone with a Chronic Illness” or “5 Things to Say to Your Friend with MS” or some other list of “rules” you're supposed to abide by. Heaven forbid you hurt my feelings by showing you care. I also don't want to rehash previous posts, but if your friend doesn't understand that your heart is in the right place, maybe she isn't your friend.

Anyway, organizing the swirling thoughts into a cogent post has been proving difficult at best. So, I decided to just write and see where the post goes. I'm sure that there's something worth saying floating around, I just need to coax it out. Hopefully.

Of course, the two things weighing on my mind are losing my mom, and taking the Tecfidera. It seems every time I sit down to write, those are the only two things in my head that pop out as subjects. Yet, I don't want to write about those two subject all the time. Let's face it; I could write about my mom every day, and never run out of things to say.

As far as the Tecfidera, every time I take a dose, I wait for the horrible side effects to hit me. I am so fortunate and thankful that I haven't experienced any of them.

So I've been coming back to this post all day, and it doesn't seem to be sorting itself out. That tells me I have something else deep down; another story that wants to be told. Darned if I can let it bubble up to the surface, though. I mean, there are a couple of other things swishing about my scarred gray matter, but I'm certainly not ready to tell those stories.

Since I live in Buffalo, I'll do the obligatory weather mention. We're expecting a decent amount of snow tonight. Living here, though, we get Lake Effect snow. If you've never had the pleasure of driving in lake effect snow, let me say that when it's dark, it's like driving into white lasers. It would be really cool, if you weren't in fact, driving into it. You can have your defroster as high as the temperature will go, the fan on the highest setting, and your wipers will still ice up. Good times.

Since this post isn't coming together the way my posts normally do, I think I'm just going to let it ruminate a bit longer and see if I can get it to click. Otherwise, this is it, kids.

Today Is Many Things

Today marks one month that my mom left our earthly realm. I know she had a life well-lived, well-loved, and full of longevity, but that really doesn't make it easier to accept. I grieve for my loss, my family's loss, and my kids' loss. My kids were extraordinarily close to my mom. One day, they will remember oodles of happy memories, but I'm sure right now all they have is a void, much like the rest of us.

Today is my third day on the full dose of Tecfidera. I completed a week at the starter dose, and “graduated” to the full dose the other day. I was slightly nervous/anxious/apprehensive to start Tecfidera after reading about all the possible side effects, but not nervous/anxious/apprehensive enough not to try it. So far, so good.

Today, my son is home sick; I think he might have strep. He woke up with a headache, now he has a sore throat, congestion, and just looks sick.

Today, my husband is sick in bed. He feels clammy and feverish. I sent him to bed to limit my exposure to germs.

Back to the Tecfidera. I go back to the Tecfidera because part of what makes it effective is that it modifies your (overactive) immune system. That puts me in quite the predicament. Do I continue to be my usual mom/wife self, take care of them and risk catching what they have, or do I ignore their needs? I think you know the answer, but I am slightly nervous about it. One of the warnings reads: Tecfidera may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.

Being sick with MS (or any autoimmune disease, really) is a whole new dimension of sick. I know it sounds like I'm saying. “I'm sicker than you”, but not having an additional sickness while having MS is difficult on its own. It's been years since I was on this kind of medicine, and my kids weren't school-age yet, meaning that they weren't bringing home every sickness known to man.

I guess time will tell whether I get sick, right?

For me, today illustrates that we don't know what the future holds, and we don't always know how the choices we make will affect our future. For me, the moral of today would be to make the choice that, when I look back years from now, I will be happy I made that choice, and my present self is comfortable with.

Everything and Nothing

Maybe you've noticed that it's been a couple of days since I posted anything new. It's because of everything and nothing. Too much and not enough.

I am still trying to find my way without my mom, and oh boy, I'm having a hard time. Yet I'm not. It's so hard to explain; I'm fine, but I'm not fine. On the whole, I'm doing fine. It's just the millions of little things that get to me now, and perhaps always will. Even now, just writing that sentence I can feel my eyes welling up, wanting to leak memories and feelings all over my cheeks.

Day to day, I'm fine. It's those rare quiet moments where everything floods over me.

Remembering the thousands of ways she showed her love to her family. Remembering the way she used to do or say things. Remembering her laugh, her sarcastic sense of humor, her love of word puzzles, how she was trying to convert a non-computer user to using a computer until very recently, remembering how proud she was of her family and her love of shoes. The thousands (millions?) of things that made my mom my mom.

I'm already missing the foods that, while I know how to make them, my versions don't taste like hers. Everyone in my family has their favorite food that my mom made. For my daughter, her favorite was my mom's barbecued hamburgers and potato salad. My barbecued hamburgers are pretty good, and my potato salad is okay. They will never be as good as my mom's.

My husband loved my mom's apple pie. Again, my apple pie is good, and I never have to toss any part of it away, but it's definitely not my mom's.

My mom used to make puffs. Not cream puffs, but this dessert was called puff pastry, and it was delicious. It was one of those things people used to ask my mom to bring. I've made them a few times through the years, but again, they weren't my mom's.

I'm talking about the foods she used to make because really I'm avoiding talking about missing her. Not missing what she made, or missing what she did, but just sitting with her, talking to her, laughing with her, having coffee with her. Those days are truly behind me, and I can't fully bring myself to think about it. I won't ever hear her say, “oh Lou Ann, that was clever” after I made some joke. I won't hear my kids exclaim, “UMMA!” like they used to when she would come in.

How she would call me and say, “I have a big big BIG favor” then follow it up with “I'm always asking for something” and a little chuckle. And it never was a big favor. It was usually something like “will you bring me ____” or “I'd like to go shopping”.

I look around my house, and there are literally hundreds of things that remind me of my mom. But that's nothing compared to the billions of things inside my head all colliding into each other. One day they will get sorted, I'm sure. But I'm also sure it will be a long time before that happens. How do you organize billions of anything?

I Am Strong, I Am Invincible, aaaaand Nope. Not Now. Maybe Later. Maybe Not.

I never used to talk about having MS. Perhaps I thought by not talking about it, it wouldn't be real. Maybe I thought that by talking about having MS, I'd be admitting defeat. Yet again, maybe I thought that no one likes a whiner/complainer/crybaby. I still believe that, but I'm starting to see the difference between talking about having MS, and complaining about having MS.

I never used to say how I was really feeling (and sometimes I still don't). I was always fine or I could have it a lot worse. While that's true, I could have it a lot worse, it doesn't diminish the fact that I do have it, and some days just plain suck.

After having MS (or maybe I should say knowing I have MS) for the past 11 years, I've discovered some things about myself and having MS.

First, I realized that I'm a pretty tough individual. No one really understands what it takes for me to do even the simplest things, and that's not something I can fully articulate. Partly because it changes all the time, and partly because you can't explain what you don't fully understand.

Sometimes I can push myself beyond, but sometimes I can't. Some days, when I'm feeling really good, I'll do more than I know I should, just because I can. Then some days, it's a struggle to get up from the chair.

MS is unpredictable. Just because I could do it yesterday, doesn't mean I can do it today. Conversely, just because I couldn't do it today doesn't mean I won't be able to do it tomorrow.

While MS has changed many parts of my life, changed much of what I can do, and changed how I do things, MS hasn't changed who I am. I'm still me, and in the words of the infamous Elaine Stritch, I'm still here.

I'm still Pollyanna, even when I don't want to be. Inside, I make all these plans to do stuff because even I don't always feel like I have an illness. Then when I go to execute said plans, my body is like, “you can't be serious”. Or worse, I'll start to execute said plans, and when I'm passed the point of no return, immersed in whatever I thought was a good idea, my body will say, “Nope. Nope nope nope nope nope”. Then I have to decide whether it's a “push beyond” moment, or “throw in the towel” moment.

As much as people seem to want to understand what MS does, or how it affects me, it's still hard to have people truly understand what it's like. You would think that someone who fancies herself a writer would do a better job describing things, but then again, maybe it's not me.

Which leads me to: it's not really my concern if people don't understand/accept/realize just what MS does to me. I still have MS whether people understand my condition or if they don't. Much in the vein of “it's none of my business what other people think of me”, if I've explained what MS is, what it can do, and how it affects me, I've done my part. After that, they're on their own. Again, though, it's really hard to explain something you don't fully understand yourself, and it's happening to you.

Now that I've said all that, part of this does sound a lot like a rant, and that's not how I intended it to be. See the first paragraph about learning the difference between talking about having MS and complaining about having MS. Even after all these years, I'm still learning.