Hot Stuff

If you're expecting one of my positive, upbeat, cheery posts, you kinda picked the wrong day to stop by. Sorry about that. Might I suggest this one instead?

Tomorrow is 10 weeks on the Copaxone or just over 2 months. I wish I could say that the reactions have eased or subsided, but they haven't. Last night I did my arm, and I couldn't go to bed for about an hour because the pain was that intense. When I finally did go to bed, my husband could see how red my arm was with only the glow of the television. Angry red. Painful red. My arm felt exactly how it looked.

Today, the pain is all but gone, and it's been replaced with itching. The itch of having hives on top of mosquito bites. An itch that feels like you need to scratch your bones, but when you try to scratch the itch, you get burning, searing, stinging hot pain.

Speaking of hot, I injected my legs last Wednesday and last Thursday, and the injection site is still hot to the touch today, a week later. You can feel the heat through my jeans. What? You're asking if that's normal? I have no idea. I mentioned the other day that Jeremy* and I couldn't connect for him to come over to look at them. He's supposed to come tomorrow. I hope the planets align and he is able to take a peek.

I honestly don't know if these are “normal” reactions. Jeremy told me that antihistamines won't take care of the itching, but they do for me, mostly. Either it's psychological, or it's really an allergic reaction. Whichever it is, I'm not having any fun.

I know I'm whining a lot about this, and I'm sorry for being so whiny.

 My hat's off to you guys who do this day in and day out for years, because this plain old sucks. Really. I don't know how you can stand having pain and itching and swelling every day, on top of your regular symptoms.

The injection itself, giving the shot, the needle, none of that is a problem for me, even though that was my reason for not wanting to give myself injections. It's what happens after I get the injection and the medicine courses through my body that causes the problems for me. Again, all of this might be perfectly normal, and you may be going through the exact same thing without complaining like I am. You're a heck of a lot stronger than I am, and apparently, I'm a baby. 

A while back, I thought things were turning a corner...there were a couple of days where I had only mild stinging after the shot, and little to no reaction afterwards. I was really encouraged. Now it seems like each injection brings some new something, like I'm playing Wheel of Reactions. There are no winners in this game.

At least not yet.

*Still not his real name

Coffee or Poisoned Blackberries?

Among other things, today is National Coffee Day here in the United States. I am a coffee consumer. I could not survive without coffee, or more aptly, those around me could not survive without me having coffee.

Like most kids, I detested coffee when I was younger. My parents would let me “sneak” sips from their cups, and I'd grimace. I would think, “Why on EARTH would anyone drink this stuff?” I once thought that about beer, too, but that's another topic for another day.

Back in high school I was really tired one day. Shocker- a high schooler being tired. I was in a teacher's class, and I was saying how tired I was. He had a coffee maker in the room, and he offered me a cup of coffee (this was a LONG time ago). He drank it black, so there were no accouterments to add, but I drank it anyway. I wasn't instantly hooked, but I did start drinking it more often.

Then came my late teens. I had a job with a 7:00 am start time. Coffee was my best friend. The place I worked had one of those giant coffee urns that made about 40 cups at a time. We went through at least 2 of those a day because there were so many coffee drinkers. We went through more on Mondays, obviously.

When I met my husband, he said he drank coffee. What he called coffee came from a jar, and dissolved in hot water. Yes, he drank (dun dun DUN) instant coffee!!! When we moved to Chicago, one of the first things I bought was a coffee maker. He hasn't had instant coffee since.

I was still drinking my coffee black, but then I had to fly for work. The airline we flew served Starbucks coffee. Have you ever tried their coffee black? It's not something I would recommend. That was the day I discovered half and half.

I started buying half and half way back then, and now I won't drink coffee without it, unless I drink it black, which I do on those rare instances when I run out of half and half. We drink lactose-free milk here, and there are only a couple of places you don't want to substitute it for regular milk. You can't make pudding with lactose-free milk. The pudding never sets. Trust me on that one. The other place is in coffee. I don't know why, but it really changes the flavor of coffee. My husband says he doesn't notice, but he adds sugar.

I have a single-cup coffee maker (the brand that comes to mind when you think of them is the one I have). When they first hit the market, I was drinking coffee by the pot, and I had no concept of why anyone would want to brew one cup at a time. Now, I wouldn't be without mine. I keep a few different kinds of coffee in the house from smooth and light Kona to Black Tiger. I even make hot chocolate with my coffee maker. I just buy the regular hot cocoa mix that my kids like, and run clear water into the mug. Thanks to a friend of mine for giving me that awesome tip!!

So, happy Coffee Day to all you coffee drinkers out there! Otherwise, you can choose from Poisoned Blackberries Day, Confucius Day, Broadway Musicals Day, or Goose Day to name a few options.

Eclipsed by Fatigue

I can't decide whether to write about the dreary weather, how tired I am, or the reactions at my injection sites. None of them sound particularly interesting at the moment. Maybe it's because I am extremely tired. When I'm tired, my train of thought gets derailed more often than when I'm rested.

Unless you're living in a cave, you know all about the eclipse last night. Then again, if you're living in a cave, you're probably not reading my blog because caves are terrible for receiving internet.

I know, because we were in a cave last summer, and the reception was atrocious! By the way, I think Atrocious Reception would be a good name for a band.

Oh, that's right, the eclipse, that's how I started talking about caves. Con you say convoluted? Well, my kids usually go to bed at 9:00 on a school night. My son has a hard time staying up past 9 on most nights, while my daughter is a night owl (like I used to be at her age). She would stay up until midnight every night if I let her. The peak of the eclipse was supposed to happen at 10:47 pm here. My son was so excited about it; they talked about it in school, and how this won't happen again until 2030-something.

Around 8:45, they asked if they could stay up until the eclipse peaked. I said they could because this was such a rare event (AND we had clear skies-double rarity). We went to look at it around 9:00 or so, and my son said he thought it was supposed to be red. I told him it would be red, but not until later. He went inside and promptly fell asleep on the couch.

My daughter and I would periodically look at, and see the changes. At 10:45, I got my daughter and tried to wake up my son. And I tried to wake up my son. And finally, at 10:47 exactly, my son woke up. We all went out to see the eclipse, and the moon was red.

My son was happy, and he went back to sleep. My daughter went to bed. I, however, caught my second wind and was up until after midnight.

I usually get up around 5:30 so I'm properly caffeinated to be close to human when speaking to the other people in the house. Today, my husband let me sleep until 6:30, and I still wasn't ready to get out of bed. Coffee didn't seem to help, and I debated whether to take a nap. I tried to take a nap, but I couldn't fall asleep.

I figured today would have been a perfect napping day. It's drizzly and dark outside. I'm tired. I really had nowhere to be. Good napping day, right? [buzzer sounds] Try again. So I went from thing to thing, not really doing much except trying to stay awake, and fighting the weather headache that inevitably visits on days like today. Then the itching started.

It seems 36 hours (ish) after my injection, the site turns red, swells, and gets itchy. My nurse, Jeremy, has wanted to come to take a look at the reactions to see if they're normal, but we can't seem to coincide with times. Today would have worked great for me, but he wasn't available. He wanted to come Friday, but I wasn't available.

We'll get it sorted eventually. Hopefully before the next Supermoon lunar eclipse.

The Calendar Says Fall

It is way too warm outside to be September 26. There should be a chill in the air, not a tropical breeze. It just feels wrong. The calendar says fall, the weather says, “I'm hanging onto summer with every ounce of strength I have.” 

I guess if you live in a southern climate, you're used to these kinds of days this late in September. I'm from Buffalo, NY, so while I appreciate the warm days, I can't quite understand them.

We're closing our pool (when I say we, I usually mean my husband). The water is drained enough, and we're just about ready to put on the winter cover. When it comes time to cover the pool, I usually try to help him. It's much easier as a two-person job.

We're not cutting the grass every week anymore because it's not growing as fast. There are subtle signs of fall whispering about, but summer is fighting to suppress them. The leaves aren't changing color yet, but you can tell it's imminent.

The bounty from the garden isn't coming as furiously as it did just a couple of weeks ago. My daughter's birthday party was on the 13^th, and we sent guests home with bags of tomatoes. We still had too many. We gave them away by the dozen. Now the garden yields a handful a day instead of a basket full. The signs are there.

We do have watermelon desperately trying to ripen before the frost comes. A few are a good size, and some are teeny tiny. There is one that might be edible soon. I'm pretty psyched about it; we've never had watermelon grow before. It's mystifying, too, because our garden was really hit or miss this year. We didn't get one cucumber, every variety of our lettuce died along with our spinach, our beans and peas were less than plentiful, and we only got a few potatoes. The tomatoes and peppers grew like weeds.

The Halloween decorations are up outside, if not the inside yet. Apple cider is in the stores. Football season started, hockey starts in a couple of weeks. Pumpkin spice latte is back at Starbucks. Christmas decorations are in the stores. It's fall, all right.

The spiders are roosting in every crevice they can squeeze into (do spiders roost?), and they are huge. The bees are aggressive like they're ticked off at the world because summer is gone. The blooms on my hydrangea are a muted, brownish pink instead of the vibrant fuchsia it was when I first got it.

It really is fall, only summer won't relinquish its hold quite yet.

Thank You, Centuplicate

Today is a momentous day for me; a milestone, if you will.

This post, the one you're reading right now, is my 100^th blog entry!!

In honor of making it to 100, I'm taking this opportunity to thank you all for reading, for the nice messages you've sent, and for the positive feedback. In all reality, when I started blogging, I wasn't sure how long I'd keep writing, and to be brutally honest, I didn't think many people (anyone) would want to read my ramblings.

For those of you who don't blog, blogger has a feature that tells you where your traffic is from, and I can truthfully say that my blog is read worldwide. It might only be my friend who is a flight attendant jetting from country to country, but, I'll take it!! Facebook tells you what languages your page has been translated to. That is another feature that's awesome...what I'd love to know is, who translated my page into pirate English?? Whoever you arrrrr, you're awesome, matey!

So, thank you for reading, sharing, commenting, and helping me smile through some rough days. Thanks for listening to me whine, celebrating little victories with me, and cheering me on.

I appreciate you all.

About my experience with MS? Yes. Yes I am :)

Here's to the next 100.

Pollyanna Was Here

Today is one of those wonderful days for no reason in particular. I'm in a good mood, it's sunny, and not too warm, but that's not why I'm in a good mood. Or maybe it is.

I had to go to Walmart this morning for a garden hose. Our nozzle seized onto our hose. That isn't normally a reason to get a new hose, I know. We need a hose without a nozzle to drain our pool, though. For those of you who don't have a pool, you need to drain some of the water out before you cover the pool for the winter. We have a hose for the power washer, but it's only a 50' hose. To reach the street, we need at least 100'. So anyway, I went to Walmart. They didn't have any 100' hoses. They did have Christmas wrapping paper and Christmas trees, though. Neither of which helped me today.

I got a couple of things, checked out (painlessly- I have to put that on the calendar) and went to my car. Do I go home, or do I try Home Depot, which is right across the parking lot? I mean, it's close enough that you could probably walk there. I can't, but a lot of people could. I decided to drive over to Home Depot and look there.

Home Depot had some interesting Halloween decorations, but I didn't buy any. Maybe I'll check after Halloween to see if there are any on clearance. If I remember. Some years ago, we bought a small Halloween inflatable from Home Depot. After a couple weeks, it stopped working. My husband took a look, and the motor was all rusty. Why would you make something made for outdoors, and not protect the motor? I went there to look for a hose, right. So I walked past the trimmers and stuff, and lo and behold, garden hoses!!

Who knew they made “Contractor Hoses”? At first glance, the only 100' hoses I found were way more than I wanted to spend. We have a never-kink hose already, so this hose I'm buying will be for draining the pool only. After looking more intently, I finally found a 150' hose at a reasonable (to me) price.

The pipes in my house weren't 100 years old when I was a kid, though

A friend came over for coffee, and we sat on the back deck, just chatting and laughing. Today is a wonderful day.

Is it because I'm feeling good? Not especially. My arms (my most recent injection sites) are itchy/burning/stinging and still sore from where I stupidly nicked the muscle. I'm exhausted. I'm aggravated with the hospital asking me for a non-existent CD of a CT scan that was done at their hospital. I'm tingly. But you know what? I'm still walking. I can still laugh about stuff. My kids are healthy. What more can you want to put you in a good mood?

I hope you're having a good day, too!

Training Day: Weapon of Single Injection

A perfectly nice nurse named Jeremy* came over yesterday to teach me how to shoot myself more efficiently. He arrived just after 10 am and left just before 11:30 am. He was very thorough, and I got the impression he really liked his job.

If you read my post yesterday, you might remember that I wondered whether we'd use live “ammo”. We did not. We didn't even practice on an orange or me. He had this nice little gizmo that acts like human flesh though it's only silicone filled with some type of powdery substance, and that's what we practiced on. If I didn't shoot myself at night, he would have shown me with live ammo, but since it was only about 13 hours after my shot, he thought we'd better not use real medicine.

We talked about my reactions that I've been having, and I told him my goal of not living on daily antihistamines. We talked at length about the difference between hives and the welts from the injections. I explained about my reaction days later where I broke out in hives around my injection site. Actual hives, not welts. He was intrigued. He said he's never heard of that before. I said I was usually glad to be different...but not just then. We'll see what happens because he also told me that where I'd been injecting in my legs was the wrong place. I told him he needn't worry, I'll never do that again. All of my other reactions are quite common. In some people, most reactions subside. There are a few people who always have them. I'm probably gonna be one of those who always has a reaction. He didn't say that, it's just my gut feeling. I hope I'm wrong, though.

Then came time to assemble, load and shoot my weapon of single injection. Once Jeremy showed me how, it was pretty easy. It only took me two times to become comfortable. I probably can't assemble it blindfolded, but I can do it without apprehension.

We talked about the problems you have when you don't rotate sites, what could happen (the stuff I mentioned yesterday). I told him that since my modeling career has long been over (like 40+ years over- I never modeled), I'm not worried about lipoatrophy. He didn't laugh; it's probably because he was thinking, “Damn, if she can model, they will take anyone!” He made me a cheat sheet with the injection sites and corresponding needle depths.

He told me I could text him to let him know how stuff went, but he can't text back specific stuff because of HIPAA laws. He also asked me not to send pictures of reactions at injection sites. I laughed really hard and told him I'd probably never send him a picture of anything, especially an area where I'd give myself an injection.

So last night, full of confidence and fortitude, I used my autoject in my arm. I set my needle depth, I looked in the mirror, found the right part of my arm to shoot, pushed the button, and...nothing happened. I had forgotten to take the safety cap off. I felt a little deflated, but I took off the cap and tried again. As I was counting to 10 to let the injection finish delivering the medicine, my arm started to hurt. Hurt, on top of the burning, itching and stinging. What the HECK? I did everything right, everything I was supposed to do; that wasn't supposed to hurt! I go into the other room where I have my cheat sheet, look it over, and I had used the wrong depth for my arm. Yea. That's a mistake I won't make again.

Today my arm is still letting me know I screwed up last night. It's not exactly painful, it just feels sore. Really sore. Lesson learned, and learned well.

Tonight will be better. I'm sure of it.

*Not his real name

Not Audrey II, Autoject 2

Today a nurse from Shared Solutions is coming to teach me how to use my autoject. I'm hoping it will cut down on my injection site reactions. I noticed that when I shoot myself, sometimes my hand has a slight tremor. I really don't notice it at any other time, so I must be putting pressure in just the right spot so that it causes a nearly imperceptible shake. I think that I'm inadvertently varying the depth of the needle because of the tremor, and maybe that's why I'm getting (what I think) are pretty bad reactions.

The autoject will at least eliminate the varying depths, because the needle only goes in so far (however deep you set it). It would be really nice not to take a Benadryl every night, and a Claritin every day to control the itching. Let me share a cool word with you guys: Urticaria. It sounds so much more cosmopolitan than plain ol' hives. Anyway, I can live with the bruising and weird little bumps, but the itching is driving me insane!

The weird little bumps are from lipoatrophy. Clinically, it's the breaking down of subcutaneous fat at injection sites. To you and me, they're the weird little hard bumps I get at the injection sites. I guess they're permanent, but at this point, I really don't care.

I have no idea (because I forgot to ask-shocker) if I'll be learning with live medicine or an alternative. I suppose I should get out a syringe just in case. I'm pretty sure we won't be using real medicine, because I'm confident it will take me more than one try to get it right.

I am going to cut this short today because I have to do a couple of things before the nurse gets here.

I'll keep you posted on how it goes and what happens.

Addendum- I just noticed that the thing is called an autoject 2. Now I'm singing "Little Shop of Horrors" because all I can think of is Audrey II.

Might As Well Face it, I'm Addicted to Laughs

I'm LouAnn, and I'm a humor addict.

I have a sardonic, sarcastic, goofy and twisted sense of humor. Try as I may to keep it in check, it's not always possible. Usually, it's not a problem, but once in a while, something tumbles out of my mouth and I get The Stare. You know The Stare. It's when someone looks at you quizzically, annoyed, wide-eyed, slack-jawed, and unblinkingly. You smile, and make a goofy joke, hoping to snap them out of it...sometimes it works, but more often than not, I'm mumbling some lame apology for joking. It's more like sorry, not sorry, though.

I laugh at really inappropriate times and places. Like what, you ask? Wellllll, funerals, ICU hospital rooms, in a crisis, when I'm having an exacerbation. Well, maybe that last one isn't inappropriate, exactly.

Nothing is off-limits for me to joke about; no one is exempt from my sarcasm, which sometimes leads to The Stare. I suppose one could say that my sense of humor is evil, but I prefer the term all-encompassing. I mainly focus on joking about myself and my illness, though. I'm not spiteful or hurtful; I don't like the insulting humor, as a rule. Self-deprecating, yes. Toward other people, no. Sure, there are exceptions, but mostly, being hurtful to other people is something I don't like.

Where was I going with this? Oh, yes, now I remember. My sense of humor is my armor, and I take it into battle with me every day. Some days, there's a chink in the armor, and some days it's made of titanium, but it's always there. For me, a day without laughing is like a day without coffee. I suppose you could get through the day, but why would you want to?

Puns, play on words, stupid jokes, groaners, one-liners...I love them all. My dad had a great (or terrible, depending on your taste) sense of humor, always with the one-liners. Dad, I'm gonna take a shower. “Okay, put it back.”

Many years ago, a story came out that Vanna White had lost her virginity on a golf course. My dad pulled me aside (not my mom, or older cousin, just me), and said, “Did you hear Vanna White lost her virginity on a golf course? Talk about a hole in one.”

Is there any question where I get my love of one-liners from?

Back in the 80's, I saw Steven Wright live. He's one of my favorites, well, because. “I put a blank tape in my stereo, turned it all the way up. My next door neighbor knocked on my door to complain. He's a mime.”

My absolute all-time favorite is Robin Williams. I won't use “was”, because even though he's no longer with us, he IS my all-time favorite. “Reality What a Concept” is one of the best comedy albums, and my favorite piece from that album is “Shakespeare (A Meltdowner's Nightmare)". It's 36 years old, and just as funny to me as when I first heard it.

I always tell my daughter that when it comes time for her to date (hopefully in about 40 years or so), she should always go for the ones who make her laugh. If someone can make you laugh, and they laugh with you, it's a beautiful thing. It's worked for me so far...

The Great Pumpkin (Farm)

We have several pumpkin farms near us, each with different features to distinguish them from each other. Some are just farms with a couple of activities, some have pony rides, but the one we started going to when my daughter was one year old is called The Great Pumpkin Farm. Each year, we would go and get faces painted, take goofy photos, watch the hokey magic show, and browse through the general store. We'd get snow cones (if it was warm), cotton candy, candy apples, let the kids go on the bounce house thing, and buy really cool and unique Halloween decorations.

We haven't gone for the past two years, maybe 3. I can't find any photos taken after 2011.

In 2013, there were other circumstances that prevented us from going. Last year we didn't go for several reasons. First, I'd pick a weekend, but the weather wouldn't cooperate. Or, if the weather was nice, we had other things to do. I kinda thought maybe my kids had outgrown it by now, so I was quite surprised when couple of weeks ago my daughter mentioned that the pumpkin farm was opening soon, and it's been a long time since we were there.

So, it looks like today is the day. We haven't told the kids yet, though. My kids like it when we get in the car and go to “a surprise”. They try to guess where we're going for a good chunk of the ride. One year, we went to a local amusement park toward the end of summer. The place isn't far, but it's a specific route that we don't take too often; pretty much the only time we take this route is when we're going to this park, or to Niagara Falls. Once we get past a certain point, they know where we're going. Except one year, I convinced them that we were going school shopping at a store that was near the amusement park. Until we actually got to the amusement park, their faces were as long as a list of my CD's. For reference, here's the post that I wrote that includes a photo.

I enjoy going to the pumpkin farm, but I'm slightly uneasy about going because it's a lot of walking. Today the temperature is only supposed to reach a high of 67°, so that's awesome, and that's in my favor. I fiercely want to be the fun mom again, the mom who is always up for an adventure. It's a terrible feeling to be betrayed by your own body, and the feeling is intensified when your kids are disappointed. That's another reason I rarely tell my kids about anything I have planned. I can't bear to disappoint them when they're looking forward to something. Especially since I haven't been up to doing much of anything for a while. This way, if the day comes, and I'm not feeling well, they won't know that I had anything planned.

So far, though it's still early, I feel like I can do it. I slept pretty well, I didn't have any outrageous injection site reactions, and my legs feel so much better than yesterday. And you know what? I just might tell my kids before we get in the car, because I'm that determined to go.

Repetitive Motion

I detest (hate, loathe, abhor, dislike with the intensity of a thousand suns- you choose an adjective) going grocery shopping, but since we sorta need to eat sometimes, I really have to go at least once a week. Sometimes I have to go more often if we run out of something that's a necessity, like coffee or chocolate.

Grocery shopping is such a hassle, isn't it? No matter how well prepared you think you are, you always forget something. You make the list, then you promptly forget it on the table, and you remember when you get to the store's parking lot. You think, “Oh, that's okay, I'll remember what we need.” HAHAHAHA. Thanks to the Wegmans app, I rarely forget my list, because I rarely forget my phone. I know I talked about it previously here, but for me, it's an absolute Godsend.

The Wegmans app sorts your list by the store layout, so if you follow the list, you don't have to backtrack. Saving steps is important to me. What nothing can account for, however, is when you're halfway through the store, and you get a meal idea that requires produce. Do you walk all the way back to the other side to get the produce, or do you change your meal idea? Sometimes, it's walk back to get the produce, sometimes, it's change your meal. It depends on how I'm feeling that day. Some days, the brain is stronger than the legs, some days the legs are stronger than the brain.

Oh, but I was talking about the hassle of grocery shopping...you walk through a giant supermarket, collecting the food you think your family will like. You get to the checkout, you have to unload all the groceries you so carefully picked up throughout the store. You pay, and then you have to go to your car, unload the cart yet again to load your car. When you get home, you have to unload your car and bring it all in the house. I'm really fortunate because if I go shopping on the weekend, my husband is home, and he will bring in the groceries for me. But your job still isn't finished, because now you have to put all of the food away. That's where my kids come in. My daughter has gotten really good at putting away groceries and has taught my son how to help.

Since we are watching our pennies (like most people in the world) I split my shopping between two stores. I go to Target first, then on to Wegmans. I like the bread better than the Wegmans bread, and their bagels are good, too. So, I get what I can at Target, then head to Wegmans. When it's warm, I don't buy frozen stuff or dairy at Target, so I'll get that stuff at Wegmans.

By the time I get home, I'm pretty well fried because it's a lot of work for me to do all that. Sometimes when I have a lot to buy, I start to feel totally overwhelmed by the time I get to the checkout. I've used my energy beyond "E" trying to walk, find, remember, balance, see, and lift. While I'm waiting in line, everything annoys me. Sounds seem too loud, the people in line are too slow (Oh, I need to pay for all of these groceries? Let me wait until my order is completely totaled to dig around for my cash, with exact change), and the lane I choose doesn't have the beverage I thought I'd get while waiting in line.

Then, I get to sit in my car. YAY, sitting!!

I like the end result of grocery shopping, because it is nice to have food in the house, but most times I really wish Buffalo had Pea Pod like we had in Chicago, or Wegmans had the buy online, pick up in store like they offer in Rochester. Until then, I forge through the vast buildings that purvey sustenance.

Side Effects Affect Me

I had a rough night last night.

I waited a good 2 hours after I took my syringe out of the refrigerator, took my Benadryl, used warmth just before I shot myself, then gave myself my shot.

OUCH OUCH OUCH

Last night was only about the second time the needle hurt going in, and it was downhill from there. It was a painful injection, then started the searing burn. While feeling something trying to burn its way out of my body, I felt itchy, so I looked and I was breaking out in hives. So I'm in pain from the needle, I have burning and stinging from the medicine, AND I'm itchy. I popped another Benadryl, and in about 40 minutes I stopped itching.

I woke up today really groggy from 2 Benadryl, and my site was painful. And itchy. You know the scene from A Christmas Story when Ralph says “In the heat of battle my father wove a tapestry of obscenities that as far as we know is still hanging in space over Lake Michigan”? That was me last night and this morning.

I took a Claritin and some ibuprofen. The burning is bearable now, and the itching has all but stopped.

I'm trying to decorate for Halloween today, but it's hot and sunny here, which is not conducive for me doing things. I do one thing, sit for a while, then repeat.

So, please forgive the short whiny post, it's all I got today.

How YOU Doin'?

How are you feeling today?

Like you, I get asked that question all day. Most of the time, it's just a duty of etiquette, and the only answer you're required to give is, “Fine, thank you.”

Then there are the times someone really wants to know how I am feeling. There are a handful of people who genuinely want to know about my tingling, tripping, stumbling, sinking, fumbling, clumsy cuz I'm falling in...oops, I just got reminded of a Fergie song. Sorry. What was I saying? Oh, yea. There is a very small percentage of people who seem to truly want to know, so I lay it out; the good, the bad, and the ugly. And they tell you how much better you're feeling.

I know people mean well when they tell you that everyone gets tired, eyesight declines with age, or that age can make you more forgetful, so I really try to bite my tongue. Sometimes what I really want to say is, “IT'S NOT THE BLEEPING SAME!” But I don't. I don't want to hurt anyone's feelings on purpose.

After all these years with MS, I've found that people who seem to downplay your symptoms usually aren't doing it because they think you're faking it, or because they think you're feeling better than you are. They usually do it out of genuine empathy. These people, for the most part, are looking for ways to identify with your symptoms (of course they rarely can, but they try), so they draw comparisons from their personal experiences.

We all do that from time to time, don't we? Someone has a cold, we draw from our own experience and compare symptoms. Someone has a sprain, we recall our sprain/ligament tear/fracture. It's a way that we show solidarity and say “I can really relate to what you're saying”. With MS, or any other invisible illness for that matter, our symptoms aren't readily noticeable (well, unless you're in a wheelchair or something, so I guess I'm saying my symptoms are invisible). When you try to explain what you're feeling, people's first reaction is to draw from their experience, and empathize. So, they recall the night with broken sleep, or the time their leg fell asleep, or the time it was too hot to do something, or they talk about needing glasses.

Please try not to get angry when people do those things. They are just showing empathy in the only way they know how. People genuinely want you to feel better; people want to assure you that you're not alone in the struggle. While they may not have MS, they certainly have some way that they think they can relate. And if you do blow up that day? Don't be too hard on yourself. We are only human and can only take so much. It takes a lot of effort and energy to control balance, compensate for faulty vision, feel tingly, try walking without stumbling, all while dealing with the fatigue that seems to glue you to the bed or the chair or the sofa. But, for the most part, people who try to empathize aren't trying to hurt your feelings. Try not to hurt theirs, either. 

You Learned it Once? Learn it Again. This Way.

I just watched a video that featured an editor named Emily Brewster from Merriam-Webster. In said video, she said it's perfectly all right to end a sentence with a preposition.* For years, it's been driven into our heads that we CANNOT end a sentence with a preposition. How many sentences have we rewritten through the years based on this mythological grammar rule? Tens? Hundreds? Thousands?

What will this do for English students in grammar school, high school, and college? Will their teachers and professors know of this change? Do memos circulate in academia “As of today it is no longer an abomination to end a sentence with a preposition” or “From this day forward, a preposition is fine to end a sentence with”? What if said educator didn't get the memo? Are they going to put sensors in red pens so that when an educator attempts to mark points off for a sentence ended with a preposition, the pen beeps and says, “This is acceptable, keep that pen in check” or, “back away from the paper”?

Do you ever wonder how many things we've relearned through the years? For example, I'm not talking about Pluto starting as a planet, then being reclassified, now having the planet status being debated again. I'm talking about learning it one way, the rules changed, so you need to learn a different way.

Some things have finite rules, like computer programming. A misplaced dot is still going to create a glitch. I mean arbitrary rules, like the preposition thing, wearing white after Labor Day (once a major fashion don't, now it's fine), or growing up Catholic and being told you can't eat meat on Fridays, but now it's acceptable. How many of us still do it the way we were taught, regardless of current rules or dogma?

Having MS has made me relearn a bunch of things, or learn old things in a new way. Walking isn't automatic, and requires balance. You can get a good nights' sleep and still be exhausted. Motivation and energy are not the same. A balanced diet and exercise don't always keep you healthy. Chocolate really is a miracle drug, not just a delicious flavor. Just because it feels like it's raining doesn't mean it is raining. Hives are not always caused by an allergic reaction. You get the gist of what I mean.

We've all made adjustments through the years to accommodate what gets thrown at us. Giving myself a daily shot is a great example. If you would have told me 3 months ago that I'd be doing the stupid Copaxone every single day, I'd have laughed at you, really, really hard. I knew I'd never do shots again. Never. Ever. Now, I'm laughing at myself. It would have been extremely foolish (pig-headed, selfish, stubborn- insert adjective of your choice) to turn down $60K in free medicine. Copaxone runs about $5000 a month. No, I probably wouldn't have had to come up with 5K every month, there are assistance programs, but that would have meant delaying treatment even longer by the time all the paperwork was submitted and I was approved. I had $60,000 worth of medicine, sitting there, waiting for me to take it.

I guess that must be how one feels on Let's Make A Deal. There could be something better behind door #3, but you have a tangible prize worth something right in front of you. What do you do? I found out that I'd keep the prize, such as it is. 

*video is from 2011

A Young Girl's Fancy Turns to Halloween?

Now that my daughter's birthday has passed, my thoughts inevitably turn toward Halloween. We're a Halloween family. Some people decorate like crazy for Christmas, and we decorate to a point, but we are the definitely the Griswolds of Halloween.

I have Halloween magazines, I make Halloween food, I usually put on a costume to hand out candy, and we decorate. And decorate. Inside and out. Mostly out. We make some of our decorations, but I'm always on the lookout for unusual stuff in the stores, too. This year, I want to try a few ideas I saw on Pinterest for outdoor Halloween decorations. Mostly I want to make the dancing ghosts painted with glow-in-the-dark paint. I think they would look creepy and cool scattered throughout our yard.

I'm usually not a fan of those giant inflatable lawn decorations, but we have (what I think) is the coolest inflatable for Halloween. It's GIANT, probably 10 or 12 feet in length, and it's the grim reaper driving a horse-drawn pumpkin coach. The pumpkin has a face that reminds me of the Grinch when the Grinch smiles. It also has motion sensors, so when someone walks by, the horse does a creepy neigh/whinny, and the reaper says, “You're next. AHAHAHAHAHA!” When we get the little trick or treaters, I always warn the parents about it, because I've seen many terrified little ones get taken by surprise, and then cry. I don't want to make the little ones cry. I usually don't warn the older ones; it's fun to see them jump because it's loud, and unexpected. And they don't usually cry.

Halloween is the only time of the year I don't mind spiders. Ooooh, I still don't like the real ones, but I love to decorate with artificial ones. I don't use that artificial webbing anymore though. Oh yes, it totally adds to the creepy factor, but I still had it on my bushes for Easter. Have you ever tried to get that stuff off of rose buses or holly bushes? No? It's like sacrificing yourself to the spider gods slowly and painfully.

Mostly, I'm a fan of witch's hats, though. Anything with a witch hat that I see, I have to buy. My friends even buy me witchy stuff that they see while they are out. I have several signs inside and outside that are variants of “Idle Brooms Will Be Toad”, or “Broom Parking Only”. I have a sign that's in my kitchen year 'round that says “Don't Make Me Call the Flying Monkeys”.

Tomorrow I'll probably be on Pinterest creating my supply lists. We usually start decorating for Halloween around October 1^st.

Don't Blink, Bow Ties Are Cool, and Birthday Parties

It's been a while since I was excited about the theme of one of my kids' birthday parties. No, actually, let me rephrase that. It's been a while since I had the mental energy to really get into the theme of a birthday party. I think that's more accurate. Or maybe I just really liked the theme for this one.

My daughter chose a Doctor Who theme for her party this year. I don't know if you're aware of this little fact, but you can't just walk into Party City and buy Doctor Who plates, cups, napkins, or decorations. Consequently, we spent a long time on Pinterest finding ideas. I can't remember the last time I had to do so much for a party. Perhaps never. I think I could always find something store bought before. It felt good to use my creativity for a change, though. So far, things haven't turned out too badly, and I'm encouraged.

Today, we're making pasta salad with red bow ties (because bow ties are cool). I'm really curious to see if the bow ties really take the red food coloring without tasting horrible. At least it will look nice :)

Bow tie pasta salad

I started this blog post Saturday, and the party was yesterday. I think that tells you how wrapped up I was and exhausted from this birthday party.

Because of circumstances, and life, it's been a long time since we had more than about 15 people at a birthday party. Yesterday was different. I had relatives from out of town come to Buffalo specifically for my daughter's party, a dear aunt came with a cousin who happened to be in town. My daughter's friends that she invited were here, and both of her godparents were here.

On her actual birthday, she said, “I wish that my relatives from out of town could come. It's been so long since I've seen them.” She got her wish (and then some!), and it was wonderful!

I was beyond exhausted last night. Once the last guest had departed, and all the treat bags were handed out, I was so beat I wanted to cry. Was it worth it? Heck to the YES! I would do it again in a minute, just to have that much laughter in the house, and see so many smiles. I don't think my daughter stopped smiling until she went to sleep.

On Wednesday, I found myself scrambling for a cake for Sunday. I had one lined up from somewhere else, but circumstances and life got in the way (familiar theme, right?). Wednesday evening I put a post on Facebook asking if anyone could recommend anyone or anywhere for a cake. I hesitated to go to a bakery because I didn't want to spend $100 for a 12^th birthday cake. Not that it wouldn't be worth it; I know cakes can be extremely labor intensive, but it was a 12^th birthday cake. A friend of mine contacted me, and she volunteered to do a cake and cupcakes. Mind you, she has her own issues (because, really, who doesn't?), but there she was, helping me in a pinch. Not only did she make a fabulous cake and adorable cupcakes, she and her husband delivered them before the party! My daughter was thrilled!

The decorations for the party were really cute, even though I forgot parts of the TARDIS on the door. Oh well.

Banner I made

Back of the banner

TARDIS (almost) door

Favor bags and bow tie napkins

I just hope my son wants something from Party City for his birthday :)

There are remnants of the party to clean up, but for the most part, the house is back to the structured chaos of everyday life. And I begin my recovery from the party.