Buying Costumes VS Making Costumes

At the risk of relinquishing the “Cool Mom” or "With It Mom" moniker, I confess that I had NO idea what my son was talking about when he told me what he wanted to be for Halloween. He said he wanted to be Nyan Cat, but instead of a Pop Tart, he wanted to use a waffle. He wanted to be a waffle kitten. HUH?

Being as close as I am to Google (we're besties), I immediately got on the Google machine and asked the interwebs, “What the heck?” 

I can't remember if I mentioned in my blog precisely how creative my son is, but as I've said many times to many people, he doesn't just think outside of the box, he isn't really aware there is a box.

In case you were curious to know what Tac Nayn and Cat Nyan are, the site Level Up Studios had a good (read: parent-friendly) explanation: Nyan Cat is a free spirit who loves exploring the universe and making new friends!

But there’s one dark entity who’ll never accept his playful friendship. Tac Nayn… destroyer of worlds!

An evil doppleganger of Nyan Cat, Tac Nayn is only interested in interstellar destruction and leaving monochrome rainbow trails across his home dimension of Tac-9.

Of course with a body made out of Belgian waffle, I can’t help but wonder, maybe he’s not all bad?

As an aside, did you know that you can't just buy a waffle costume? Well, in case you were wondering, you can't. An internet search yields approximately 10 of the same pictures, all homemade costumes. One of the photos looked like it was within my realm of expertise (it looked easy). A woman took a convoluted foam mattress topper, cut it into a circle, added some paint for highlights, and she looked like an Eggo waffle.

I thought to myself, “Awesome, I'll go and buy a $15 mattress topper, we'll add some paint, and done!”

I learned something else. The old convoluted foam mattress toppers (egg crate style) don't exist in the cream/yellow/off-white incarnation for $15 anymore. They have blue ones, and they are now $30 and up. Well, what if the paint wouldn't cover the blue? I'm out $30 and my son still doesn't have a costume.

Then, my husband remembered we had an old mattress topper upstairs!! Even better! A no-cost costume! He brought it down, and yes, it was foam, but it wasn't egg-crate style, it was swirls and squiggles. Not exactly waffle-esque.

Off I trekked to Michael's. I bought some white foam board and a bunch of paints. Okay, kid, have at it.

My husband cut the boards into squares, but my son did the rest.

My daughter had a costume/birthday party to go to earlier in the month, so she had to decide on a costume early. She chose Minnie Mouse. Later we found out that three or four of her friends also chose Minnie Mouse, but that's okay. She loves her (store bought) costume, and so do I. The only thing I had to do for her costume was paint shoes, and add red bows. I am a shoe painter from waaaaaaaaaay back, so it was no big deal.

Both kids go to schools that allow them to dress up for Halloween, so both kids wore their costumes this morning. I had two happy kids today. I love happy mornings! 

Never Enough Minecraft!

My kids have been playing a game called Minecraft for a few years now. I can't remember exactly when they started playing, but it's been a while. If your kids aren't playing, don't let them start! It's a gateway game!

They start off with the free version. Seems innocent enough. Building things with blocks like virtual Legos. Harmless, right? They play the free version for some time, then it's not enough. There are limitations in the free version, and the kids can't do what they want. Soon they will need more than the free version can offer, so they beg for the PC version.

You say no, so they save their own money to buy it, that's how badly they want it, no, need it! Then they save their money for a long time to buy a PlayStation. Guess what game they buy to play on the PlayStation? You guessed it; Minecraft.

Now they are playing the free version on your tablet, the PC version on a computer, and the PlayStation version. Then, as they are getting more and more addicted, they will start watching YouTube because there are videos so you can watch strangers playing Minecraft. Eventually, they will play Minecraft while watching a YouTuber play Minecraft! Next, they will Skype or Facetime each other from their rooms so they can play Minecraft on their PlayStations together.

Skip ahead to last night/today when your kids ask you to download mods for Minecraft. And you have absolutely no idea a) what a mod is b) what a mod does c) what to do with the mod after you download it. All you know is that it's free and your antivirus program didn't sound any alarms when you downloaded it. Oh, and even though the PlayStation version is faster than the PC version, the PlayStation version doesn't let you add mods, so that's why you need the PC version, too.

As a bonus, it's been discovered that the only PC in the house fast enough to run this game properly is Mom's computer (mine). Oh, joy. The other computers lag really badly, and it's no fun to play like that. I can sort of understand that part; we used to have a game called Doom. You'd move the mouse, and a few seconds later, your character would move. By that time, you'd be dead.

My daughter keeps telling me that she wants to teach me how to play Minecraft. I have absolutely no interest in learning, so every time she brings it up, I tell her that I'm afraid if I learn how to play, that's all I'd do all day.

Both kids have other games for the PlayStation, but Minecraft seems to be the only game they play. I've talked to other parents, and this doesn't seem to be unique to my house. From what I gather, there's a Minecraft epidemic affecting many of our children, some as young as 4!

Then, of course, there's the merchandising. A foam “diamond sword” is twenty bucks! A foam pickaxe is also $20. Figurines are about $15. My kids have none of them. They also make Minecraft Lego sets. I can get behind those, and we have them in the house. I'd much rather they play with actual Legos than virtual ones.

All from a game that started as a free download. Free indeed!

Staying Positive

Well, today marks eleven years of knowing that I have MS.

Eleven years of officially knowing that I have an incurable, life-altering disease. Life-altering for me, yes, but also for those around me. Those who love me. After eleven years, there are times I feel less like a survivor and more like an existor.

As disease progression goes, I do consider myself lucky. I'm still walking. I don't have a catheter. I can still eat. Could those things change in my future? Sure they could. I always lay still for a second or two before I get up to make sure my toes wiggle. So far, they've wiggled when I want them to. Will that change one day? I don't know.

I remember the person who was me before I found out I had MS. Oh, sure, I'm still me, and in many ways, I haven't diminished at all. In my head I'm still an ambitious, creative, vibrant person who can conquer the world. My body usually puts the kibosh on those plans, and thus is my daily struggle. The struggle between being the me who I think I am, and the me who I want to be versus the me who lives in this body.

I think back and recall weird little things...I remember when I was around 19 or 20, and I had my first job in jewelry manufacturing. I was experiencing some peculiar symptoms that I thought were like rheumatoid arthritis, so I saw a rheumatologist. After some testing, he determined that I didn't have RA. He didn't know what it was, but it wasn't RA. 

Around the same time, I was seeing a neurologist for migraines, and one day I called her because I was having weird vision problems. It was as though I was getting a migraine, right before you see the saw-tooth aura and everything goes grayish. She told me that you can get a migraine without the headache. For years I just assumed I was having a non-headache migraine when in fact, it was more likely optic neuritis. What did I know?

I wrote about the whole long time in Chicago where they never even looked for MS in this post, if you haven't read of my saga.

Would I be any different now if they had diagnosed me in the 90's? I don't know. Does it matter? No, not really. I had a conversation with a friend yesterday, and I'm still curious to know why I have MS. As I mentioned in this post, I don't want to know from a “why me, poor me” standpoint, but from a science standpoint. What triggered the disease? Was there an underlying factor, is it caused by a virus? Did a gene mutate?

I try not to dwell on things I can't change, or things that might have been, because what's the point? I choose to spend my energy to live in the now. And that takes plenty enough energy. I try to stay positive, and focus on the good stuff.

And when you look hard enough, there's a lot of good stuff.

I'd like to say that MS has helped me become more tolerant, less of a perfectionist, and that MS has helped me be less critical of myself. I'd like to say those things, but I'd be lying. The truth is that sometimes I feel guilt and anxiety because of what I'm unable to do. I'm still waiting for the magic bullet that will let me be the mom my kids think they have.

When It's Like Shooting Yourself in the Foot

It's been a little over 3 months since I started the Copaxone. At first, I felt great! My vision seemed sharper, I had tons more energy, and except for the injection site business, I really didn't have any side effects. I thought, “Wow, I found my stuff!” That didn't last very long.

Here we are today. I actually got out the prescribing information and read about it last night. Out of 53 possible listed side effects, I have 27. Twenty-seven.

Of course, some of them are injection site related, like the pain, itching, swelling and hypersensitivity. But some of them, some of them...do you remember me telling you about taking antibiotics recently? All of my symptoms related to feeling sick with sinusitis and pneumonia can be attributed to the Copaxone. Constant runny nose? Copaxone. Cough? Copaxone. I mentioned the back pain already. Anxiety, speech problems, chills, vision problems...all of them can be from the Copaxone. I have my furnace on, I'm wearing jeans and a turtleneck sweater, and I'm freezing.

I am not sure what this means for the study, but I'm pretty sure that experiencing half of the listed side effects isn't “normal”. I left a message for Clara*, and I hope she'll call me back today. I think I need to be seen my neurologist.

I cringe at the thought of starting the process of finding a new medicine all over again, but this is ridiculous. Feeling how I feel from the MS, and then layering all this other stuff of top of it? Fatigue, tingling, pain, optic neuritis, spasticity, the corset feeling, brain fog, headache, feeling things that aren't there, and weakness from the MS itself, coupled with feeling like I'm sick from the flu, along with itching, burning, chills, coughing, and back pain? I'm kind of over this.

Granted, Advil does take away the back pain, but taking ibuprofen for an extended period of time isn't good for anyone, either. That would present a whole other host of problems.

If I sound aggravated, it's because I am. It's not enough that a person has a disease (and this could be any disease, not just MS), but the medicine that is supposed to help you makes you feel worse. It would be different if there was a gradual trade-off, like runny nose stays, but the fatigue is gone. Or brain fog is gone, but the itching stays. But noooooo, you get them all. The medicine isn't meant to be a cure, or even treat the symptoms I already have; it's meant to slow the disease progression and help prevent future relapses. I'm having a hard time seeing the benefit of continuing to shoot myself every day.

To those of you on Copaxone who experience all these side effects and keep taking it anyway, Godspeed. There's got to be something better for me out there.

*Still not her real name

Monday Monday. Can't Trust That Day

I might end up keeping this post short today. My “good” eye (the one that doesn't have visible nerve damage) is twitching like mad and it's driving me crazy.

It's been a Monday here today. Both kids missed their buses, and I took them both to school. They go to different schools, and the schools are not terribly close to each other. I mean, it's Buffalo, so they're not terribly far apart, either, but I was wondering how it would work out.

I fear that my kids have inherited one of my worst traits, and it's that I lack time management skills. In my defense, MS does play into it...I used to be able to do things a lot quicker, and I have a hard time accepting that it takes me so long to do simple things.

My daughter volunteered to be the one who got to school late in the event that I had to choose.

Here is how our morning went:

I don't know why, but I jumped up at 6. I mean, literally, I woke up to myself jumping out of bed. I quickly realized that it really hurt to jump up. Remember the back thing I mentioned last week? Yep, still there.

I woke up my daughter at 6 so she could get in the shower. Mind you, her bus comes at 7:04. She took an impossibly long shower, and I had a feeling that I'd be taking her to school. No big deal, we live about 12 minutes away if I get caught in traffic, about 8 minutes away if it's clear.

I woke up my son at 6:30. He is really good about getting up right away. He is as close to a morning person as we have in this house. He's rarely grumpy, never asks for “two more minutes”, and almost always wakes up with a smile.

While I was packing lunches, I realized that my son hadn't come down from his room. I went upstairs to check on him, and he had fallen back to sleep. Oh, and did I mention that my son does not like to be rushed? That makes him grumpy. I woke him up (again) just before 7, and he freaked out a little because he leaves the house between 7:25 and 7:30. 

I told my daughter what time it was, and she freaked, because like I said, her bus comes at 7:04, and she leaves at 7. She was still brushing her hair. I said to her, “okay, don't panic, I'll take you to school.”

Around 7:15 my son said that he wouldn't be able to catch his bus because he hadn't finished his breakfast. “Okay, I don't know how this is going to work, but I'll take you to school, too.”

At 7:50, we're all leaving together, and I get my son to school around 8:05. That leaves about 15 minutes to get my daughter to school. I know how to get to her school from my son's school, but I'm trying to figure out the best way from my son's school. I got her to school about 8:15. If she hustled when she got inside, she could have been on time.

I finally got to have my second cup of coffee when I got home from dropping them off at their respective schools, at approximately 8:30.

I don't do well (read: can't function at a high level) when I have to change plans suddenly; it sort of (really, really) throws me off kilter. Now I'm a little bit like lost, because it's already nearly 10:00 am, and I just finished my second cup of coffee. It looks like very little is getting done today. Plus, I still have that stupid eye twitch that started last night. 

Oh well. At least dinner is made. I made a big pot of beef stew yesterday, and there's plenty left for dinner today.

This Old House

Our house is over 100 years old. While there are some cool things about it, there is one infuriating characteristic, a constant you can always count on, and that is “there is no such thing as an easy or simple fix”. About the only thing that doesn't turn into a project is changing a light bulb.

When we had to replace the faucet in our tub, it turned into a small-scale bathroom remodel because we had to replace so many parts. You just can't buy modern parts and expect them to fit into the older stuff. We know this, we've lived this, and still, we always hope that we're wrong, that this time, things will go smoothly.

We've needed a new handle for the front door for a while. Our door is original to the house, and the house was built in 1910. I love our door; it's solid wood, and still has the original leaded glass window.

The window in my door, original to the house

I also have been purposely procrastinating buying a new handle because of our house.

I've had my eye on the electronic handles; the ones with a keypad

where you enter a code instead of having to remember a key. Although it does also have a key. My kids are getting older, and soon I won't have to be home when they get home from school. I figure they can remember a code much more easily than remembering a key. If they forget the code, it doesn't involve a trip to the store to get a new code. If they lose a key, well...

Last week I found a website that had the electronic handles on sale. They were about $40 less than I had seen at Home Depot, or anywhere, for that matter. The site offered free shipping and charged no sales tax. Since the price was the lowest I've seen for this particular handle, I ordered it. I ordered it despite knowing it was going to be a project to install.

I wasn't wrong about the installation being a project, either, though I wish I was wrong.

My husband, God bless him, is wonderful. Truly, I don't have time to list all the glowing adjectives about him. He's been working on putting in this handle since yesterday after he got home from work. The door had the old mortise style lock set,

which means that our door was hollowed out to make room for the original lockset. My husband had to fill in the hollow part and then cut through again in different places to be able to install the modern-style lock.

To make matters more interesting (worse, you could say worse without exaggerating), somehow, nothing lined up like it should (ah, the joys of an old house).

Knowing my husband, he will have this installed today. He has the tenacity of a bulldog (he is stubborn- in a good way).

Warehouse Clubs and Christmas

Years ago, I belonged to one of those wholesale clubs. You know the ones, where you can buy 147 rolls of paper towels or a package with 1500 napkins? One of those clubs.

I had a really bad experience there when I was 8 months pregnant with my daughter. I wanted to buy something from the jewelry counter. I waited forever (standing on the concrete floor, 8 months pregnant) for someone to help me. When someone finally came over (about 30 minutes later), the person made me walk all the way back to the service counter to actually get the item (about 50 yards). While that may not sound like a huge distance, to an 8-month-pregnant woman with undiagnosed MS, it may as well have been 50 miles. I actually contacted their corporate office, and they gave me a free one-year membership tacked on to the end of my current membership. I stopped going to that location and rarely went to that store at all. When that membership expired, I didn't renew it.

Fast forward from 12 years ago. There was a Groupon or Living Social offer for a membership for $35, and you got a $25 gift card when you joined. So $10 net for the year? Sign me up! I joined in the spring.

It's now nearing the end of October, and I have been there exactly 4 times. Two of those times were shopping for Easter dinner and my son's birthday.

Going to a warehouse club requires planning for me. I have to gear myself up to tackle the extra walking, to explore extra aisles. I don't go there near often enough to learn my way around, so it's always like exploring a new world. There is no “popping in” to the warehouse club like you do a regular store. If I want milk, I need to traverse the entire store (yes, like a regular store, only twice as big). Of course, stores do that with good reason. They hope something catches your eye along the way. Several times. So your trip to get milk turns into $150 at the register.

Part of the reason I joined this year is because they have cool and unusual Christmas decorations. Yes, I'm one of those people who think about Christmas all year long. I bought some really neat stuff there through the years, and I'm looking for something fairly specific.

I have a large garden bay window in my kitchen with a deep ledge. I have things to put in the window, but they are starting to get tired looking. Last winter, I switched things around, but because the window is so large, regular sized decorations look dwarfed.

I am looking for some kind of decorations that are anywhere from 18” to 36” tall, but made for inside.

So today, I've made up my mind that I'm heading to the wholesale club to check out their Christmas decorations. I mean, it's almost Halloween, so the Christmas stuff should be out, right? I was in a store last night that had all their Christmas trees set up and decorated. Let's just hope my body follows the plan. I'm waiting for rush hour to be over and writing today's post before I go.

Oh, if you read yesterday's post regarding buying a new island or just getting a stool, I opted to get an inexpensive stool. Rather than compare and speculate and redesign, I figured that even if I do eventually get a new island, I won't feel bad about getting rid of the stool. I found a basic stool at Target, and it cost less than $15 including tax.

How I Really Feel Today

If you're expecting one of my sunshine-y posts today, this ain't it. I'm in a mood, and I'm afraid that my post today reflects it.

I read a post this morning from Positive Living with MS, a page I read daily. I found it interesting because she talked about how she feels when people try to help by offering suggestions that they heard about. She talked about how stressful just hearing about “someone who was cured” can be to her.

It made me think. I wondered if that's what I'm feeling when a well-meaning person suggests some treatment/option/“cure” they heard about. I wondered if that's what I'm feeling when someone asks if “I'm better”. I wondered if I'm stressing when someone tells me I need to exercise. As much as I try to let it roll off of my back, it does bother me, some days more than others.

I would love to be more active. Love it! I wish someone could tell me how I'm supposed to do yoga, or go for a walk when I'm wondering if I will have enough energy to cook dinner, take a shower, and do a load of laundry all in the same day.

For me and my MS, fatigue is and always has been my biggest complaint and most difficult symptom so far. Other symptoms are slowly creeping in to contend for the number one spot, but the fatigue is hardest for me to date. Partly because my head still thinks I can do what I want, but my body just says, “Not today. Maybe not tomorrow, either.”

I think I create undue stress on myself, too, by having expectations for myself that are not attainable. I have all these plans that I make in my head, and body says, “have coffee”. Standing to peel potatoes is taxing. I keep saying that I'm going to get stools for my island, and I don't think of it until the time comes for me to stand and do something. In fact, excuse me for a few minutes.

Well that turned into more than a few minutes. I started looking at stools, then thought maybe I should get a new island, then I found one, but it was too small, then I started looking at pub tables...and here I am. No stools, because now I'm wondering if I should just get a new island with stools, and I'm indecisive.

Back to what I was saying. I create stress on myself, and it's coupled with guilt from not doing what I think I should be able to do. My husband, God bless him. He works full time, and picks up the slack I leave around here. The kids pitch in, too. But I feel like I should be doing more; like I should be able to do more. It is such a difficult thing to explain; being betrayed by your own body.

I don't know if this statement is based on scientific research, but I can tell you it feels true.

That's one of the hardest things about my MS. Just when I think I've figured out what my normal is, it changes. What I could do 6 months ago can still be done, just not all in the same day. And it's so hard (read impossible) for me to accept my limitations. So hard. I wake up feeling really good sometimes, so I'll start all these things only to crash partway through the day. I always feel like a slacker, like I'm not doing enough. No matter how I feel physically, my mind is always asking to do one more thing. It's like my own head doesn't understand my body. No wonder no one else does.

So I need to put the clothes in the dryer, and decide if I want a new island, or just stools. Oh, and I haven't felt any different taking the supplements yet, but I have developed a new side effect from the Copaxone! I've been waking up with back pain. I blamed it on all kinds of things, but now I'm thinking it's a new side effect. Lord know that it's definitely not from exertion. 

To be fair, I was pretty weird before I had MS, so there's that...

Be Brave, Be Kind

Today is one of those days where I can't seem to zero in on a topic. Even with my convoluted way of writing/talking/thinking I can't link them into one blog post, and none of them are enough for a whole post. I can't find any way they are connected, except in my head (which as we all know is a very special place).

Some of them aren't my stories to tell, anyway.

Maybe that's my post. We'll try it and see where this goes.

I know a bunch of things, and recently learned a bunch of things. Some of these things fall under my “accidental knowledge” heading, and some things are just things that happened.

You might notice from time to time (like today) I'll say things like, “it's not my story to tell”. I wonder how many other people feel that way. For example, if someone I know needs prayers, I'll ask for prayers, but not mention the person's name. It's not that I'm trying to be deceptive or mysterious, I do it out of respect for their privacy. Especially if the friend hasn't posted anything publicly about it, I would never want to be the one to “out” them, or their condition.

I wonder what makes someone decide that it's okay to post about a situation or medical condition that is happening to someone else? What I mean is that I write about my MS. I don't write about my friends' conditions or my stuff that happens to other people, because none of those experiences belong exclusively to me. If I do mention something that doesn't directly concern me, I'll put it in the most generic terms possible because I don't want to tell a story that isn't mine. I write about my experience in a situation, but if it wasn't mine, you won't know the reason why I had that experience.

Am I making any sense? Well, let me keep writing and see if I can clarify, or if I have to start over. Again. And if I have to scrap this post, so be it.

Why this topic is weighing on my mind is because of something I learned yesterday.

I won't say what I learned, but I was thinking, “What if this happened to me, if I hadn't told anyone, and someone put it on the 'front page'? My family would read it in the 'paper', rather than hear it from me, personally.”

It was my choice to go public about having MS. MY choice. How would I feel if someone else made the choice to do it for me? What if I hadn't told members of my family yet, and they read about it in a casual mention somewhere? I would be angry, sad, and hurt if someone decided to tell MY story.

If you didn't know me before I started this blog, you don't know that I'm actually a fairly private and an introverted person. Except for family and some friends, no one outside of my neurologist's office really knew I had MS. I decided to share my experience living with MS, and I'm glad I did. I've learned so much from doing this, and I hope I'm not boring you too much.

I'm just glad that I didn't have the choice taken from me by some well-meaning person who decided that my condition needed to be made public.

Am I the crazy one? How do you feel about it?

I'm Not a Doctor, and I Don't Play One on TV

Remember my post the other day about longtime friends? I have quite a few of them, I am privileged to say. I'm so blessed to have these people in my life. I met another one of my longtime (since FOURTH grade longtime) friends for coffee last week. Our conversations are wildly varied and jump from topic to topic. One of the subjects we talked about were supplements.

I've never been a person to take supplements or even vitamins. Sure, I took prenatal vitamins when I was pregnant, but regular multivitamins simply do not agree with me. In an effort to make sure I am getting my vitamins, I recently bought a bottle of prenatal vitamins. Guess what? I've been able to take them without a problem. My only problem is remembering to take them. I take morning meds, but I can't take my vitamin with them because the vitamin interferes with the absorption of the medicine. I think I'll put them with my Copaxone, so when I do my shot every night, I'll remember to take the vitamin.*

I've learned a few things about vitamins and supplements, and I thought I'd pass the information along to you.**

One of the supplements we talked about was Black Currant Seed Oil

capsules. My friend sent me a bottle to try. I have no idea whether they will work, but they can't hurt. I read all the known interactions and side effects, and they seem fairly easy on the system. According to what I've read, these capsules are used to treat a variety of illnesses, from RA, to MS, and they have seen some evidence of them being effective when used in conjunction with chemo in cancer patients.

I'm including a few links so you can read about these things if you're interested. Vitamin B6 can help or hinder some medicine absorption. It is also essential for absorbing B12, which I am deficient in, hence taking the prenatal vitamins.

The black currant seed oil capsules contain gamma-linolenic acid which is an Omega-6 fatty acid. Preliminary studies are looking promising for treating a variety of conditions, including inflammation. As with any supplement, be sure to talk with your doctor before starting a regimen because they can help some conditions, but interfere with other medicines.

I'm excited to see if I feel any different taking them. Today is Monday, and I started them Saturday, so I'm not expecting results yet, but, you know I'll keep you posted!

*Putting the vitamins with my Copaxone has been working really well for me.

**Now, you know I'm not a doctor, so I'm not trying to treat or diagnose any condition or illness. Before trying any of these, make sure you talk with your doctor.

Snapshot

So let me explain the lack of a post today.

I went out with a friend early-ish this morning.

Then I got home, had more coffee, did a few dishes, and made potato soup for dinner.

I'm ready for bed.

Now. I want to be in my big ol' comfy bed. NOW.

Today is one of those days where I'm just done.

That's a snapshot of life with MS. Unpredictable, unstoppable, and unforgiving. MS doesn't care that you wanted to do more. Standing and peeling potatoes requires taking breaks. What used to take less than half an hour now takes about 90 minutes because I have to keep stopping to rest.

I'm fresh out of ideas, because all I can think about is my head resting on fluffy pillows, stretching out my legs, and snuggling under multiple comforters.

Good night, dear readers. I'm hoping to replenish some muchness while I sleep.

Heroes in our Midst

Yesterday I was reminded how deeply our illnesses can affect spouses, partners, or anyone who loves us and sees us daily. The people who agreed to “In sickness and in health”. The people who stand by us in sickness, while hoping for the health. The people who feel as though they aren't “allowed” to get sick, or feel like they can't tell us how they feel. I touched on this subject for Father's Day, but I think it deserves a more in-depth look.

The people who love us and want us to be well have it hard. Maybe they don't have our same illness or even any illness, but that doesn't mean they are fine. They hate to see us sick, hurting, wiped out, incapacitated, or otherwise just feeling how we feel. Our illness weighs on them, possibly even more than it weighs on us.

Let me explain that a little better. We know how we feel, we know what we can and can't do. We know when we can push ourselves, and when we're just done. Our heroes can only peer through the crack in the fence, guessing at how we're doing. They really don't know what we're feeling, even though they may want to. They want us to be better, not just feel better, but actually be better. It hurts them that they can't fix us. No, we're not broken, but I mean they want our illness to be gone; for the illness to be something we remember, or look back on, not something we live with every day. The people who love us get frustrated at what they can't do for us, and sometimes they have a hard time explaining it.

We feel the illness firsthand, even on our good days. Our heroes can only guess at what we must be going through, and I think sometimes, that might be mentally worse. What I mean is that we know exactly everything that goes on inside. Our heroes worry for us, so we don't have to expend that energy. Our heroes worry about the toll the shots are taking on us, how we deal with the pain, the numbness, the blurred vision, or the fatigue. They are so concerned with us, that sometimes they forget to take care of themselves. And they carry guilt. Enormous amounts of guilt.

If there is something wrong with them, they have a tendency to minimize it, or not address it at all. They don't want us to worry about them.

You see, while yes, we live with the illness, we rarely allow ourselves the luxury of thinking about it. By luxury, I mean we use so much energy compensating for the illness itself, that it would be a luxury to use more energy thinking about what the illness does to us and our families. Our families are the ones who dwell on the “what ifs”, allowing us to battle the disease. They think about how the medicine makes us feel, while we try to just get through it. They think about what happens if we need a wheelchair, while we just try not to need one. They think about all the stuff we can't or don't think about. And that's a heavy burden to carry.

So, for those of you who believe hero is an improper term, or too strong of a word, I pray you never need to know exactly why I call my husband my hero.

If I left anything out, please feel free to add what I've missed. You heroes know how you feel, and anything you're feeling is valid. No one can tell you to “snap out of it”, or “be thankful it's not worse”, or some of the other well-meaning (but highly annoying) cliché. You deserve more praise than I can ever give.

Thank you.

Longtime Friends

I had coffee with a friend of mine yesterday. I've known her since we were in 5^th grade, and just in case you're unsure, yes, that was a long time ago. We met before push-button phones were common in homes, before remote controls were standard with televisions, waaay before the internet and cell phones, and before Van Halen released their first album.

We may not see each other often because of, reasons,

but when we both have time that coincides, we try to get together. And it's always great to see her. She's wonderfully sarcastic; we speak the same language. We joke, and we just laugh. And joke some more. Do we reminisce about school? No, actually we don't that much.

Maybe because school is where we met when we were ten years old. We've kind of changed and grown some since then. We ask if the other one keeps in touch with other former classmates (outside of Facebook), but that's about the extent of reminiscing. Oh, and we did talk about some former teachers, their mannerisms, their classes, stuff like that. But over the course of a few hours, that accounted for maybe 15 minutes of our conversation.

I think it's hard to stay friends with someone you knew “way back when” if all you can talk about is the past. The song “Glory Days” by Bruce Springsteen comes to mind. I think if you can't find anything contemporary to talk about, it really limits your conversation. Plus, I don't want to believe that my best years are behind me, no matter what age my birth certificate says I am.

Where I went to school, we were taught to be people, not robots, to question everything, to challenge authority. We were taught that if something needs changing, go out and change it. Always be yourself. Stand up for your beliefs. So when you cross paths with a former classmate or even a former teacher, there is always something to talk about aside from your common alma mater.

We like to think our school had a unique blend of people, ideas, backgrounds, aspirations, and abilities. When you talk to anyone from my class, that's a recurring statement, and I am constantly amazed by the amount of talent assembled in one building. There is also a unique bond that comes from being a part of something that was experimental at the time, and very small. We had fewer than 100 people in my graduating class. I'm friends with many of them on Facebook and stay in touch with some people face-to-face. The bond even crosses grades; people who I may not have known in school, or maybe we weren't in school at the same time, but we have that instant connection.

A couple of years back, I was talking with someone who went to a different, smaller school, and he said he felt the same kind of bonding. The bond that crossed graduation years, and it's just because he attended that school.

What about you? How large (or small) was your school, and do you keep in touch with anyone?

What a Wonderful Day!

Yesterday was a wonderful day!

A friend of mine texted me in the morning to see how I was feeling because I've been really really sick with a virus that acted like pneumonia. I was sick my whole birthday weekend. My friend told me that she and her son were going to a pumpkin farm and wanted to know if the kids and I wanted to go. I actually felt much better yesterday, and it sounded like fun, so I said that we would go with them.

The weather was amazing! Sunny, about 70°, light breeze, it was a good day for walking around a farm. The prices at this place were really affordable, too. For $9, you got admission to the corn maze, a horse-drawn wagon ride to the pumpkin patch to choose your own pumpkin, and a return ride. My kids loved it! There were also animals you could feed and pet. From rabbits to horses to goats, sheep, pigs, cows, and chickens, this was a real farm, not just a petting zoo.

My kids love animals, and could have spent all day just petting and feeding the animals. There were 2 baby goats meandering around, and they were about the cutest things you'd ever seen. After you choose your pumpkins and return to the main area, there are wagons you can load your pumpkins in to get them to your car. One family had some pumpkins in a wagon, and one of the baby goats was climbing all over the pumpkin-filled wagon like he was scaling a mountain. He would scrabble on top of the pumpkin, lose his balance, tumble down pumpkin mountain, then start over again. It was too cute not to watch, especially since we were waiting for the wagon to come 'round.

My daughter fell in love with a horse named Marty. She said he reminded her of a horse we met some years back named Blackjack. Blackjack is a very large, but very gentle sheriff's horse. Marty was also very large, but very gentle. I'll have to find a photo of Blackjack to see if they really do look similar, or if we think they look similar because they are both large, black horses.

There was a chicken walking around the farm like a foreman on a job site. We didn't pet her, because she was a chicken, and even we know better than to try to pet chickens. She was fun to watch, strutting from place to place, supervising the action like a nosy busybody.

My kids were transfixed with the corn silo. It's a silo made of sturdy chicken wire, so you can see all the corn cobs sitting in the silo. Don't forget, we are city folk, so things like this hold a certain fascination for us.

Our time had ended at the farm, and we made our trek back to the city. I took my daughter to dance at 5, and when I got back, my husband told me that he was taking my son for a haircut. I'm pretty sure I told you that my son didn't get his haircut last week. Well, he finally got it cut yesterday. He looks great! You can see his handsome face; it's not hidden beneath all the hair. The most important and fantastic part is that he loves his hair short! Thank goodness he does. It would have been misery around here if he didn't like it.

In the annals of Wonderful Days, yesterday was one of the red-letter days from start to finish.