Always Look on the Bright Side of Life

I had another post written for today, but as I started to read it through to edit it, I didn't like it, and I couldn't imagine you sitting there reading it. To say it wasn't one of my best would be too kind. So, I'm starting over.

When I'm writing something, inevitably I think of a part from Stephen King's On Writing : A Memoir of the Craft where he talks about letting his wife, Tabitha, read the first draft of a novel. She finished reading it and asked about a section of the book. Stephen King explains that he needed a backstory for the character to explain something and Tabitha King replies, “But did you have to bore me with it?”

That's always in the back of my mind, and I think it's worked so far. Of course, if you and I have opposite tastes in reading, you may think I've not done such a good job weeding out the boring bits, but, well, I'm learning as I go. And you're still here, so it must not be too bad.

I follow some pages on Facebook about MS. One in particular is: https://www.facebook.com/PositiveLivingWithMs?fref=ts

The other day I read one of her posts, and it really hit home. Here's the link: http://positivelivingwithms.com/2015/08/27/hope-doesnt-just-happen-its-made/

It really describes me, and how I choose to look at things. It's not that I'm unaware of unpleasantness, but it's that I choose to focus on the positive. Most of the time, anyway. I mean, once in a while I get overwhelmed thinking about everything that could happen as my disease progresses. But, it might not happen, so why worry? I know the bad maybes, but I choose not to focus on them. I'd rather focus on what I can still do, and hope for the things that I might be able to do, as opposed to what I might not be able to do.

Funny thing is, like so many posts that talk about MS, there is a crossover or tie-in that almost everyone can identify with. We're all fighting a battle. Some are in a war, some are in a skirmish, but everyone has something that they're up against. And we all handle things differently. What is a minor setback for me might take someone days to recover from, and vice-versa.

It's okay for you to feel how you feel, and don't let anyone tell you otherwise. Even people who have the same disease as you aren't feeling exactly what you're feeling, though they understand what you're feeling. We all have those days where we just wanna cry, where we wanna stop fighting. I'm lucky to have something inside that tells me to knock it off after a little while. It's probably driven by the 3 somethings I live with on the outside who need me, but whatever it takes for me to “snap out of it” is fine with me.

I actually find it more exhausting to be negative about stuff than to be my cheery self. For me, it's hard work not to be happy. I guess because I'm so used to looking on the bright side, it's very natural to me, like being sarcastic, or laughing at inappropriate times.

I'm still laughing at myself about having a panic attack over buying an airline ticket.

Of Mice and Muchness

A lifetime ago, I went back to school to study computers. I was planning to be a network administrator. I got Microsoft certified, complete with a lapel pin and wallet ID card. Yes, I was actually a card-carrying geek.

I was pretty good at it, I think because it seemed intuitive to me. I did really well in school and on the Microsoft certification exams. Then I got sick with pneumonia, except it wasn't pneumonia. It was an MS exacerbation. Of course, I didn't know that then, since I wouldn't be diagnosed for another 4 years. Anyway, I missed so much time I had to leave mid-semester, and I just didn't go back.

I won't lie, it was hard on me. Really hard. I was working full time (my full-time week was anywhere from 45 to 60 hours a week), and going to school full time (3 nights a week for 4 hours a night). On school nights, my dinner was usually a Snickers bar and a diet Pepsi, with the occasional bag of Cheez-Its from the school's vending machines. I thought I was pulling it off, but my body had a different opinion.

At one time, I could pinpoint, or at least narrow down the cause of just about any computer issue. Click click click, the problem would usually be fixed. These days, because I'm so far removed from the land of computing, I'm at a loss when it comes to diagnosing and fixing problems. Even when I think I know, there's the lack of confidence factor. I just don't know anything about them anymore. I mean, when I went to school, I learned on Windows NT, Google wasn't a verb, Amazon only sold books, you paid for internet by the hour, and we were all impressed with our 56K modems. Things are a little different now.

My first computer had a 640-megabyte hard drive. Today, my DVR has 2 terabytes of storage. I installed my upgrade to Windows 3.1 from floppy disks. One year for our anniversary, I was so excited because my husband bought me a CD burner!! You probably have no idea how excited I was to get one and install it myself. I still remember opening the computer to configure the jumpers for hardware installation, or needing the installation floppy disk when you bought a new mouse. When Windows introduced plug-n-play, I was amazed and thrilled.

When I got a computer that had USB ports, it was another learning curve, the same as when I got a mouse with a scrolling button. My first mouse only had 2 buttons, no scrolling, and was connected through a serial port. Rather than it being optical, it had a ball inside that we used to have to take out and clean because it would get gunked up. With each new advancement for the computer, we were like cavemen discovering fire and seeing what we could do with it.

Now you sort of understand why I was at a loss when my son recently asked me to figure out why his computer was running so slow. I did what a reasonable person would do (for once), I called an expert. Lucky for me, my really really good friend is just such an expert. Or at least he was. But he still is, as far as I'm concerned. Anyway (boy, I sure interrupt myself a lot, don't I?), I listed all the things I tried, then took a guess at what I thought might be causing the lag. Turns out, I was on the right track but stopped short of actually executing the ideas. Like I said, I'm really unsure of myself these days when it comes to computers. Probably because I used to be much more muchier.

Fresh Sarcasm Made All Day

I have a couple of people who I send “good morning” texts to sometimes. As I was sending one of those today, I added a description of how I was meaning to say it. I find myself doing that a lot. When I write my blog posts, I often italicize so you can easily hear how I meant to sound when I wrote it. Texting and Facebook give you no such option. Oh sure, you can add emoji sometimes, but it always doesn't do as much to emphasize or clarify.

For example, if you write, “I had another lousy day”, that's pretty straightforward. If you write “What a great day”, that could go either way. You could be being sarcastic, or sincere. Of course, I always assume sarcasm because it's my native tongue, but there are those (gasp!) who don't use sarcasm as readily as I do. “What a great day” with a smiley face would seem to indicate sincerity. “What a great day” with a tongue sticking out would seem to show sarcasm.

When I send a text that's maybe earlier than usual, I'll usually do all lower case letters, and add “i'm whispering, hoping not to wake you”. I'm not sure why, I mean unless the recipient has their sound off, the tone they hear will be the same whether I intend to whisper or not. Probably because I'm goofy like that.

When I do a Facebook post about something good that happens, I always make it very clear that I'm being sincere. I may even write that I intend to be sincere, not sarcastic. Maybe that's a sign that I'm a little too sarcastic (is there such a thing?), but I've been honing my sarcasm for many years, and I have no intention of easing up now.

Is there a point to today's blog? Hmm, good question. What do you think the point is? Maybe the point is that it's easy to be misunderstood via text, more so than in person or even by phone. Interpretation depends so much on the reader's mood. What may be a perfectly innocent statement might be taken to be snarky if someone is tired or already cranky. If the person can hear you, they might more easily understand you meant no offense. Maybe.

When you're as fluent in sarcasm as I am, you are often misunderstood, so you spend a lot of time explaining yourself. You'd think that would be an incentive to back off on the sarcasm, right? Maybe a normal person would, but, do you remember the name of my blog? :)

Bouquets of Newly Sharpened Pencils

A week from today, my kids will head back to school. I have a pretty good start on school shopping. I have all the supplies on my son's list, and I'm hoping that I'll get my daughter's list of supplies in the mail today. I guess we'll have to wait until later to find out for sure.

Every time I go shopping for school supplies, I'm reminded of the line from the movie “You've Got Mail” when the Tom Hanks character tells the Meg Ryan character “I would send you a bouquet of newly sharpened pencils...”. For some reason, I adore that line.

https://www.youtube.com/watch?v=vViMeAkOsv8

I admit, before I had kids, I would wander among the school supplies, and sometimes sneak an item or two. Or six. Some of the stuff I could use for work, and then I sometimes worked from home, so... I loved buying inexpensive crayons, packs of paper, new notebooks, or pens by the dozen. I loved post-it notes and highlighters and sharpies. When it's time to go shopping for school supplies, I don't mind it.

Contrast buying school supplies to shopping for clothing. Not nearly as much fun as it should be. I found stuff online this year. It was actually fairly risky because I'm not exactly sure what size my daughter is right now. She's just growing out of children's sizes, but she still might fit in some children's sizes, and we all know how junior sizes run...it's a messy business. My son is pretty easy to shop for when it comes to clothes. Choosing shoes, or more precisely sneakers, with him can be a patience-testing exercise. This year, though, both kids got shoes they liked, without arguing (with me or each other), within 30 minutes. That was a lovely shopping trip. Even if I spent a little more than I wanted to, and my daughter still doesn't have sneakers...

Well, to be fair, she wanted what she called “normal sneakers”. When asked to provide further details as to what “normal” is, she wants plain, basic solid-color, preferably Nike. I'm assuming something like these:

And not these:

                          

And while they had a plethora of the multi-color kind in all brands, most of the solid-color shoes kinda looked like they were made for the mall-walking crowd. And I mean no offense by that, it's just that a twelve-year-old doesn't want to wear the same kind of shoes as mall-walkers.

Which reminds me. It's now official. The shoes that are too small for my daughter now fit me, or some are too big for me. My son wears the same shoe size I do in boys' shoes. Any day now I expect to become the mini mommy. I mean, this comes as no surprise, my kids have always been tall, my husband is tall, and he comes from a tall family. Now, my kids' foreheads are awfully close to my forehead. We're already in the phase where you need to know who owns what shirt because my son, my daughter, and I wear really similar sizes, so going by size alone won't help anymore. So far, it's just shirts, but soon, it won't be.

While school shopping can be a pain sometimes, I try to remember that all too soon, I won't be shopping for school clothes and school supplies, but dorm gear, then housewarming gifts.

For all of the unsolicited advice I got while I was pregnant, one little gem has stuck with me through the years. I don't even remember who told me because I was pregnant with my daughter, who is turning twelve in less than 2 weeks, but someone said that I should never wish my kids older, because it happens on its own, and sooner than you think. That person was so right.

Iced Tea to Hot Cocoa

It seems to happen every year. We get these hot, sweltering, tropical days that raise your blood's temperature to just below boiling, then, we get some cooler days. It doesn't just cool to a reasonable summer temperature, oh no, it cools off to a nice fall temperature, just to give us a taste of what's to come.

Obviously, I'm enjoying the cooler weather, because I like to move and breathe and stuff, but there are those who want to hang on to summer with all their might, holding it against its will. I'm not one of those people. I like the relaxing, no pressure, no real schedule, fluff days of summer. I like having my kids home with me. But I warmly welcome the cooler temperatures, the changing colors, and leaves crunching beneath my feet.

If history is to be believed, the temperatures will warm up soon, and stay warm again for a while before really settling in for fall. And we'll welcome the warmer days, like long-lost old friends who visit. We'll be sad to see those days go, because we know after fall comes the dreaded “w” word. Winter.

Likewise, there are people who adore winter. The people who love to ski, the people who love feeling the cold air on their noses. I'm not one of those people, either. Last winter, my amazing husband built an ice rink in the yard for the kids. They were all out there every day, shoveling the snow from the rink, leveling the ice, and freezing. They loved it! I went out long enough to take photos, and went back inside to have hot cocoa at the ready.

Sometimes I wish I liked the extremes of the thermometer. I wish I could be there when my kids experience skiing, if they choose to ski. I wish I enjoyed the 90º days so we could go to the beach instead of cower in the air conditioning. But I'm not that mom. Never have been, and probably never will be.

I'm not really fussy about the weather; I just want it perfect. MY definition of perfect.

Coffee and Whining

First of all, let me apologize for the whiny tone of yesterday's post. I get outraged, then carried away ranting about people's judgments. Nine times out of ten I am pretty good at ignoring the Judgy McJudgsters of the world, but every so often...well, you know. And yes, I realize that I'm judging people for being judgmental; the irony is not lost on me.

Okay, now that that's out of the way, I can talk about what I intended to talk about. And then some.

Today is a gloomy, drizzly kind of day. The kind of day that makes you want to sit with a book (or video game, if you're more coordinated than I) and coffee/tea/hot cocoa for hours. For me, this kind of day just says, “slow down, appreciate what's around you”. But if I slow down anymore, I'll be in bed.

These past few days (weeks?) have not been stellar for me, so consequently, there are things that require my attention. Mount Washmore is expanding at an alarming rate, and threatening to take over my basement; school starts next week, and my kids both need shoes; I don't have a supply list for my daughter; and I've only bought a few pieces of clothing for each kid. I did get some really good deals, though, like 4 pairs of jeans, a top and a sweatshirt for $67 including tax and shipping.

A friend is stopping by for coffee, so I dug deep to rely on my old-fashioned coffee brewing skills. Yes, I had to remember to put in the filter, scoop the coffee, and add water. I even remembered to put in the filter before I scooped the coffee, so you know it's a good day! I'm low on K-cups, but there's a package coming today, so I really didn't want to buy more. I started the pot of coffee and checked on the delivery status of my shipment. “Delivered”. Really? I go to the front porch, and there's my package sitting there looking smug. I'm pretty sure I heard it taunting me. Or maybe it was the coffee maker doing it. Either way, at least I've got enough K-Cups again.

Mount Washmore is slowly shrinking, so I am making some progress. That's the nice thing about doing laundry or dishes. There's that minuscule element of instant gratification. Dirty stuff in, clean stuff out.

Time to go check the dryer.

Dealing with Judgy McJudgster

I haven't been posting every day. I figured it's ok because it gives me (and you) a break. Don't fret (or rejoice), I'm not giving up the blog. I just decided to take weekends off.

I was chatting with a Facebook friend (who I also know in the outside world) this morning about “invisible illnesses” and how cruel people can be. She doesn't have MS, but she does have a different debilitating autoimmune disease. Someone actually talked about her “imaginary disease”.

I was outraged and reminded of a post from Ashley Ringstaff:

“It's over 100 degrees outside and I stopped at the store. The only parking open was a football field away from the store or handicapped. So I used my placard. When I was unloading my cart. A snooty ... You know what, in her all spandex outfit, called me a lazy bitch. Let's just say I let her know what I thought about her. TGIF??” 

https://www.facebook.com/AshleyRingstaffMS

I don't want my blog to turn into a bitchfest where all I do is complain about “normal” people being rude and judgmental to people who look “normal”, but it's annoying and exhausting fighting illness and judgment. Forget trying to correct people who compare their troubles to yours. Those are the people who are easy to ignore; their hearts are usually in the right place, even if you want to scream at them, “IT'S NOT THE SAME!!!!”.

I guess what I'm trying to say is that it doesn't cost anything to be kind and understanding. Everyone is fighting a battle of some kind. What's difficult for you, might be a breeze for someone else, but that doesn't mean you struggle any less. It also doesn't give you the right to judge anyone for their abilities, or lack thereof.

I get it; there are a lot of scammers in the world, but not everyone is a scammer. At the risk of sounding preachy, you shouldn't assume that all people are “faking it” because they don't fit your definition of what sick looks like. Kindness goes a long way and doesn't cost a thing. Be kind. And you, Judgy McJudgster, people do get sick and not look sick to you. And to those of you who deal with Judgy McJudgster, use kindness toward yourself, and eff them. I understand, though, it's hard to deal with over and over.

This is written about MS, but really, it applies to every “invisible” illness.

http://positivelivingwithms.com/2015/08/21/you-didnt-do-anything-wrong/#.VdcjrfZVgSV

Yea, I'm “in a mood”. I'm tired of trying to educate people (who mostly don't really want to learn), tired of dealing with “you look fine”, and tired of these gobstopping shots. I'm itchy, sore, bruised and swollen. And I've got ELEVEN more MONTHS to go, at least.

Fight or Flight

My friend's son is driving back from Florida soon. I thought it would be a good idea for me to fly down and drive back with him. We get along really well, and I don't mind driving or riding long distances.

I have never liked to fly. I sort of enjoyed the short time it took to arrive somewhere, but I hated pretty much everything else about flying. It seemed that every time I flew, something went wrong. I've been on a plane that went through turbulence that was so bad I smacked my head on the window and dislocated vertebrae in my neck. I've been on a plane that filled with smoke, I've been on planes that dropped thousands of feet for seemingly no reason, I've been on planes whose airlines ran out of de-icing solution in the winter and had to “borrow” some from another airline. I've been on a plane where the stall warning went off after takeoff. I've been on planes that lost power, I've been on planes with bomb threats, plus I've had the inconveniences of delayed and canceled flights.

The first time I ever flew, I was 11, and I was traveling from Buffalo, New York to Los Angeles, California. That was the year of the rollover DC10 crash in Chicago. http://www.history.com/this-day-in-history/dc-10-crashes-killing-all-aboard That plane crashed at the end of May, and I was scheduled to go out there at the end of June. The crash was huge news, and even an 11-year-old knew about it. In the back of my mind was my upcoming flight. To say that I was anxious was probably an understatement. Oh, yea, and I was flying alone. As evidenced by my writing tonight, I made it to LA and back, but I was not thrilled by the experience.

I'm not sure how long it was until my next flight. It was probably when I went to France. The flight there was by far the best flying experience I ever had. Flying home was another story (bomb threat, delayed flight, canceled flight).

When I worked in Chicago, we had to do a fair amount of traveling (flying). I'm sure my boss had bruises from me squeezing his arm and saying, “What's THAT?” every 2 minutes. He had a pilot's license, so I thought I'd feel better flying with him. Not so much.

My usual pre-flight ritual would be to stop in the hotel bar, have a vodka sunrise, pop 2 Benadryl, and board the plane. That would get me groggy enough to sleep through takeoff, sometimes even to cruising altitude. I would still wake up with sweaty palms. Apparently I was even nervous in my sleep.

When I would fly home from Chicago for a visit, I always took solace in the fact that there had never been a plane crash here in Buffalo.

The last time I flew was when we went to Disney in 2009. The flights actually weren't too bad. A delay coming home, but nothing major. Less than 24 hours after we landed, flight 3407 crashed in Clarence, just short of the Buffalo Airport. http://www.nytimes.com/2009/02/13/nyregion/13crash.html?pagewanted=all&_r=0 We had flown the same airline and the same route 24 hours earlier. When I was booking the Disney trip, I went back and forth about the travel dates. Ultimately, we decided to return on the 12^th instead of the 13^th for no other reason than it was cheaper at Disney to leave on Wednesday. Along with all of western new York, I was shocked, stunned and saddened. And then I realized how close we were to possibly being a statistic.

I know about all the statistics that say it's safer to fly than drive. But I think I have a better chance of walking away from a car crash than a plane crash. Anyway, this isn't meant to be a debate or defense, I'm just sharing my experiences. And given my track record for incidents involving planes, really, are you going to argue with me?

So when I said I'd fly down to Florida, everyone was pretty stunned. I figured a nice, short flight would be good practice for me because I want to travel out west next year for a friend's graduation. Plus I would call my doctor for a prescription for Xanax. I've heard they can really help with severe anxiety. I've never taken them, myself.

Here's where you get to have a good laugh at me. I had a good laugh at me.

Today, I was looking up flight times, and trying to find a nonstop flight that wasn't oh GOD early. I found one that didn't leave too early, was nonstop, and got to Florida at a good time. Then the funniest thing happened. I was having a hard time breathing. My heart was pounding so hard, I could see my shirt fluttering. My chest felt heavy and constricted. The harder I tried to book the flight, the worse I felt. Then I realized, I was having a PANIC ATTACK. A full-blown, all-in-my-head, heart attack symptom PANIC ATTACK. Really. Really? Seriously? Trying to book the gosh-darn flight sent me into a panic attack. A panic attack!

I've never had a panic attack before. Ever. I've been scared, and nervous, but never have I dealt with this before. My sincere sympathy to those of you who have these more than once. There is no “suck it up” or “get it over it”. You're paralyzed, sort of. It's a very odd sensation to describe.

I guess my flying days are over, unless you make the plans without my knowledge, drug me, and load me into the aircraft.

I've become Mr. T.

Entertaining Office Visit

A glimpse into today's office visit.

It's been 28 days since I started the Copaxone, and today I had to go for my one-month checkup. They checked my vitals, drew some blood, and gave me medicine. Oh, yea, and I had to bring my unused medicine so my contact could count the unused syringes.

My contact calls me this morning before my appointment, and she tells me to meet her in her office instead of the infusion department where we were originally going to meet. Thought: since I write about my contact so much, I'm going to give her a name. What name shall I give her? Clara, I think. Yes, Clara. I get there, go up to Clara's office where she meets me in the waiting room so we can go down to the infusion department because there were no exam rooms open. Yes, you read correctly, we were going to meet there, but that got changed this morning.

We chat in the elevator about nothing, the crummy weather, how the weather changes your mood and induces headaches. Stuff like that.

We get to the infusion department where it takes about 30 tries to get 6 blood pressure readings. Clara kept getting error messages from the cuff unit. “I'm dead, aren't I? I died and no one told me.” I try standing up straighter, take the purse off of my shoulder, cross my arms, uncross my arms, but nothing seemed to stop the errors.

Clara Also comes over to us. Clara Also is a nurse who works in the infusion department. The first time I met her, she introduced herself as Clara, also. So obviously she's been Clara Also since then. Anyway, Clara says to Clara Also, “I don't think this is the right cuff for her. It doesn't seem to fit.”

Clara Also replies, “Well, it's a normal adult cuff.”

Clara said, “Yea, this isn't the right cuff for her.”

We all laugh. And agree. And the last reading of my blood pressure was the highest one, which is still low-ish. Ninety-something over sixty-something.

So now it's time for Clara Also to draw some blood. Not sure why she mentioned that her vanity plates say “Gngr snap” because every variation of “Soul Stealer” was taken (yes she calls herself a ginger). As the blood starts to flow into the tube, I say, “Oh look, here's a little bit of my soul now.” She promised to tell me where her new freckles popped up when I'm there for my next visit.

Come October, I hope I remember to ask.

Mad and Bonkers

I've been thinking a lot about “Alice in Wonderland” lately; the movie with Helena Bonham Carter and Johnny Depp. There are just so many things I adore about that movie. If you haven't seen it, you really should.

It's visually beautiful, the cast is darn near perfect, and it's just hugely entertaining. There is one particular line that I always think of. It's said by Alice's father to Alice, then again by Alice to the Mad Hatter: I'm afraid so... you're mad. Bonkers. Off your head... but I'll tell you a secret... all of the best people are.

Aren't we all a little mad and bonkers? I mean, in some way, we're all a little off, aren't we? Isn't the “spark of madness” (thank you Robin Williams) what makes us, well, us? We all look at an object with different eyes. Some people will look at a piece of paper literally, and see a piece of paper. Some people imagine it's a page from a book. Some people see it as a potential airplane. Other people might imagine the possibilities the paper could be. Isn't imagination just a touch of madness being unleashed, ever so slightly?

And what of it?

Well, I think the most creative people have the biggest spark inside. Those are the people who I love to be around; those are the ones who help me see things differently. Their spark will create fires, if you let it.

Have you ever been with someone who sees only possibilities in the mundane? It's a gift to be cherished. I'm referring to the artists who create sculptures from trash, who can take paper and make a flying swan, who take flour, water, and newspaper and make something entirely breathtaking. The vocalist who can make you cry because the music is so powerful, the actor who makes you forget he isn't speaking directly to you, but is in a movie. Anyone who can make you feel. The creative and talented people of the world are a special gift to us. It's up to us to recognize and appreciate them.

You've heard that everyone knows something you don't? It's true, I think. Just as I believe that everyone has the power to do something, everyone is good at something.

There are things I can just do, and I was an adult before I realized that not everyone can do them. I was just reminded of taking my own abilities for granted, as small as they are. I figured everyone could walk around a store, and imagine different uses for an object as opposed to only seeing its intended use. I honestly didn't know that not everyone can imagine things and visualize things that way. 

I think I'll go make some tea...

Surprises and Autojects

FedEx came this morning and dropped off two packages. At first I thought they were the backpacks I ordered for the kids, but then I realized one was light, and one was kind of heavy. Both of the backpacks are the same size. I also remembered that the backpacks were shipped via UPS.

Then I remembered about my “goodies”! I felt like Steve Martin in "The Jerk" when the new phone books came! I had called Shared Solutions* a looooong time ago for an autoject. They told me I'd have it in 3 to 5 business days. When I called Shared Solutions to check on the autoject 2 weeks later, they told me that they needed a prescription to send me one. Mind you, there's no medicine in the autoject, it's just a plastic case that holds your syringe and delivers the medicine.

They also told me they faxed a request my doctor's office three times, and left a voicemail trying to get said prescription. Great. So I called the doctor's office and left a message. The doctor's office called me back the next day, and while they weren't “quite sure what happened”, they did go ahead and fax a prescription over to Shared Solutions. Thanks SO much, I said, with the sarcasm dripping from my tongue.

Each time I call Shared Solutions (three times so far), they are always offering to send me stuff. Lip balm, sun screen, gel packs, alcohol prep pads, and a gripper for the syringe. And those are just the things I remember being offered. I'm not sure what lip balm and sun screen have to do with Copaxone, but Shared Solutions offers them just the same.

One nice thing is that Shared Solutions offers to come to your house to train you on giving injections. I haven't scheduled training yet, but I think it might be a good idea to have someone else in the house know how to administer a shot. My wonderful friends help me out when I need to do arm shots (because it's really awkward trying to give yourself a shot in the arm), and I know they don't mind, but I would feel better being self-sufficient, or at least having back up in my house.

Random subject change: I've been feeling totally crummy with the latest heat wave. I've been going from the chair to the couch. I'm also a little cranky/grumpy/not-quite-feeling-sorry-for-myself. I'm fairly disappointed because I was feeling so great recently. I mean, I knew I'd probably regress a little because of the heat, but I didn't expect to slide all the way down. Just goes to show you how unpredictable this ridiculous disease can be. Almost 11 years after my diagnosis and it still has the ability to take me by surprise. I don't even want to think about how I'd feel without the medicine.

*https://www.copaxone.com/hcp/shared-solutions

Inefficient Progress

I can think of so many ways that technology has made our lives easier and better. Then there are things that I call Inefficient Progress...

I was working on the invitations to my daughter's birthday party. I wish I could say that they're the awesome 3D hand-assembled kind, but they're not. They're the kind done with a printer. Not a 3D printer, either, but a regular old inkjet-type.

It took me hours to get these invitations done. Not the design, but printing them on odd sized paper. Back in the olden days of the 1990's, you could specify a custom paper size to the printer, and then the printer would fit your design to the page automatically. Done, and beautiful. Maybe printing a photo was grainy, but it always fit on the paper.

It's been years since I made invitations on the computer. My daughter chose a specific theme for her birthday, though, and she wanted to have invitations that were complementary. I agreed to make them, because back in the day, I was a wiz at doing invitations, and that was pre-Google! Sure enough, I found what I wanted, got the layout the way I wanted, and they looked pretty good. Then came the time to print them.

You see, we went to a craft store over the weekend, and we bought blank card stock with envelopes. Maybe if we would have gone to another store, I could have found half-fold cards with envelopes, but we were already at the store. Stop 2 of 3, and I didn't want to stretch it to stop 3 of 4. I was already hurting.

The card stock we bought is 5” x 6 ½” folded, meaning the paper size is 10” x 6 ½” for the printer. When I tell you I found NO templates for that size paper, I mean it. I looked at every site I could think of that had templates, blogs that claimed to have templates, asked on Facebook for ideas, looked for the manufacturer's website, and then finally stumbled on a site that listed the actual measurements for all the weird paper options. Weird, like the size I ended up telling the printer to use, was B5 (ISO), I think. It was pretty close once I found out what B5 (ISO) meant. It's 6.7” x 9.6” in case you were wondering.

So why would B5 be a size my printer understands, but it doesn't understand 5 x 6 ½? I was very frustrated, indeed. I was annoyed at not being able to put in a custom paper size, I was annoyed at having to learn what B5 (ISO) meant, and I was annoyed that I had very faint extra lines when it finally printed. It wasn't a whole lot of fun. Luckily for my family, I didn't really get into it until they were safely asleep, and they didn't have to deal with Frustrated Pollyanna. She ain't pretty. Or particularly nice.

Still, I'm fairly satisfied with the end result, and I acquired more accidental knowledge. It didn't, however, stop me from wishing I had a Time Lord to take me to the point in time when the invitations were finished.

I'm Pollyanna

When I started to blog, I felt this urgency to get every little thing written down. I felt like I had something to say. I still feel that way, but the urge to write something other than blog posts is all but consuming me.

Aside from the writing itch, I just feel like my blog has served its purpose, in a way. Either directly, or indirectly, this little blog was the catalyst for quite a few people to start writing (again, or for the first time). For that, I'm really happy.

Maybe it's because I'm starting to feel better. I feel more like a regular person instead of a sick person. God, it's been so long since I was a regular person, I don't think I can remember exactly what that feels like. All I know is that sometimes I can do laundry and cook dinner in the same day. Yes, it's a far cry from what a regular person can do, but it's been forever since I could do that.

Maybe it's because I'm reading more, and I have the urge to see my name on a book cover. Maybe I have experiences to write about, but they're not my stories to tell, so they sit in my brain, creating a traffic jam for stories. It's not writer's block, it's writer's clog.

It's three weeks ago today since I started on the Copaxone. That's 21 injections I've done (with the exception of 4, because I can't do my own arms without an autoject- another story for another day). 21 shots for someone who vowed she would never do it again. Only 344 more shots to go as part of this study.

I can't think about doing this every day for the long term. It's truly overwhelming. I just had a conversation the other day, and we agreed that if we were ever insulin-dependent diabetics, we'd have to have a pump. There are some people who have to inject insulin twice a day. God bless 'em. This sucks.

Since I'm Pollyanna, I refuse to end this post on a downside. So, this:

Ministry of Silly Walks and Other Fun Side Effects

It's been more than two weeks since I started the stupid Copaxone. I still hate giving myself injections, though the intense burning has mostly disappeared. I still get some stinging, but it's usually gone within about 30 minutes.

Oh, my, ev'ry night
Glinting silver and glass shine

Take the plunge, each night

I've had some interesting site reactions, though.

One night, the site swelled. I think the medicine sat under the skin instead of dispersing (maybe?), and I had a round-ish thing that looked like a giant hive. It was about 3 inches across, and was what my mom would call a “mean red”. It looked hideous, but I didn't have any pain or itching. By the next day, it was gone.

One night, I gave myself a shot, and the next morning I had a really ugly bruise in that spot. That didn't hurt, either, but it took forever to go away. I can still see faint remnants of it.

I get itchiness at the injection site sometimes. Also, sometimes clothing will irritate the site. That's especially fun when I inject in my legs, because then I look like I work for the Ministry of Silly Walks.

I try not to think about having a minimum of 49½ more weeks of doing this. A year is the length of the study, but if it's working (and I have no reason to think it's not-at least not yet), I suppose my doctor will keep me on it.

I still have more energy than before I started the shots, so that's huge. Before the shots, on a day like today (overcast and drab), I would struggle to get out of bed, make coffee, keep my eyes open. While I'm not skipping through the house, I'm making my to-do list for today, and not feeling overwhelmed.

I really noticed yesterday that my balance problems are still lurking.

I see the doorway

It's never moved in ten years

Wobble, bruise ensues

I am reading more, but I still need to reread passages to figure out words because sometimes the letters are missing chunks.

Letters missing chunks

Vision blurred, yet it's all clear

Nerve damage, you bitch

I'm still pretty tingly, especially at night. I'm exceptionally itchy, not just at night though it's far worse at night. The heaviness in my legs isn't subsiding, but I've discovered I can make it much worse (I won't do that again) by wearing the wrong shoes (a valid reason to go shoe shopping).

Still I forge on, just like all of you do. We are all dealing with something. I'm not different, not special. I just choose to make my fight public. Maybe someone reading this might smile, or work up the courage to call their doctor, or try that medicine.

Remember, I vowed I would never give myself injections ever again.

http://tryingtofindmynormal.blogspot.com/2015/08/ministry-of-silly-walks-and-other-fun.html

Sundays at the L

Sundays are usually our time to just be; hanging out on our back deck, in our tiny corner of something very close to paradise. We call it the L, which was derived from a photo posted to my Facebook wall years ago:

Which then prompted someone to say that there probably shouldn't be any poo in it, either. So, we shortened it to the “L”, which also works nicely to abbreviate “The Loveless Veranda and Resort”.

Anyway, almost every Sunday during the summer for the past few years, our dear friends (do you have the friends who are family, not just friends? If not, you should get some.) have been coming over. We laugh a lot, drink a little, eat a lot, laugh some more, maybe swim a little. It's a total no-pressure, no obligation, all fun kind of day.

Today, we have parties to go to, and our friends have guests staying with them. The L will sit vacant on a Sunday. It's not that I don't want to go to these parties, I like the people who invited us, a lot. Both parties are at neighbor's houses, so they're really close. I even know what I'm going to wear!

There's just something about Sundays at the L that makes us all feel a little more ready to start the week. The laughter we create on Sunday helps on Monday. Maybe we'll do a scaled-down version on Tuesday. That happens to be someone's birthday.

Some MS Inspired Haiku

1.
Cup filled with coffee

A hand forgets it's attached

Coffee cup emptied



2.

I see the doorway

It's never moved in ten years

Wobble, bruise ensues

3.
Oh, my, ev'ry night

Glinting silver and glass shine

Take the plunge, each night

4.
Murky mucky muck

Muchness just a memory

Wading through this life

5.
Weighted legs, seem huge

Who put the lead in my clothes

Difficult to walk

6.
Letters missing chunks

Vision blurred, yet it's all clear

Nerve damage, you bitch

7.
How beautiful the moon

The sun? Rejuvenating

Life between the two

Almost full moon