The thing about MS

Here's the thing about having MS. You look SO good! It's funny, because if you read books or websites about MS (and why would you not?), PwMS (that's People with MS for all you non-initiated) talk about this phenomenon ALL the time. I look exactly the same as I did before I was diagnosed. Exactly the same as before I had my first exacerbation (ahhh...the totally numb feet during law school, turns out it wasn't stress Dr. Smartypants!). Well, I'm fatter. But other than that, I look exactly the same.

However, inside my head, it's a different story. Multiple sclerosis literally means "multiple scars". Inside my brain are scars that result from inflammation caused by my immune system attacking my central nervous system and lead to a disruption of the nerve signals traveling to and fro. And, lucky for me, I also have scars in my spinal cord nerves...a good indicator of potential mobility problems later in life.

As a result of my scars, or as I like to call them, "Tinglemakers", I have numerous ongoing, yet invisible, symptoms. These include: numb hands, tingling in all extremities, trigemic nerve pain (pain in facial nerves and teeth - it's excruciating), headaches, blurry vision in my right eye, and fatigue. Fatigue is a result of nerves finding new, but less efficient, ways to do things. Think of saving a penny off of every dollar you spend - it adds up! If your nerves reroute themselves in a slightly less efficient manner - by the end of the day - it adds up! As a side note, most medical books call the scars "lesions", but I hate that...it sounds so...so...brain herpes.

So, I don't know where I'm going with this. I drop my keys a lot. I need more naps. I fall down quite a bit more than your average Jane. It's not the end of the world. The side effects of the meds are honestly worse than most of the actual disease stuff. But, it's coming up on my one year anniversary of diagnosis (Happy Memorial Day everyone!), and I'm not sure I can say I've come to terms with all that this means. I look in the mirror and I just see me. And I kind of think that's OK. I mean, I don't want to be one of those sad-sack, I'm all about my disease type of people. But, when I feel really shitty, I kind of wish I could have a rash (ok, maybe not a rash so much) or turn blue or something...just to prove I'm not faking it. Maybe I just need physical validation of my occasional internal ickiness. (PS: Dear God, I promise I do NOT need physical validation in the sense of a cane, wheelchair, breathing tube, or any other horrible MS related medical nightmare. I'm sorry I even brought it up. Love, E. Spat).

OK. I've rambled enough. The Boy is making me dinner and has poured me a HUGE glass of wine, so off I must go. These meds are supposedly hard on my liver, but I kind of feel like a life without wine and cheese is a life I'd rather not live. They test my blood every three months - someone would let me know if I was sliding down hill in the liver department - right? Let's drink to healthy livers!!!

PS: Go visit Postcards From Yo Momma. Hilarious.

Stuff and things.

Today we registered for wedding gifts. It sounds fun, but really it's exhausting. By the time we were done I pretty much didn't want to get married anymore - even with the free gifts. We also had a hard time because we kept feeling guilty about how much everything costs...I mean, I don't want to ask people to buy me a $129 Calphalon sauce pan...but, somehow I overcame my fear and registered for a bunch of stuff that I will love and use all the time, but that is NOT cheap. It's weird to think about having grown up cooking implements. This is my third marriage and his second, and it's the first time either of us has registered for gifts. It was fun to point the scanner gun at things though. Click - it's mine! Click - it's mine! Very easy to get carried away.

We also bought wedding rings today. Tungsten steel for him (no, seriously), and two tiny diamond bands for me, one for each side of my engagement ring. Mine might not be ready by the wedding, but that's OK...we'll still have the piece of paper, the unending love and devotion, and a 10-piece set of Calphalon to show for it. Right?

That brings us to the wedding. June 13th. Friday, June 13th. Friday the 13th. Oh well. My mom was born on Friday the 13th and she's pretty cool, so I'm going to work with it. We're going to Vegas...a small elopement there and then a HUGE reception/party here in July. I think it works better that way. Then we can really enjoy the party without the wedding stress...we're doing a huge backyard barbeque. With a cupcake tower. I heart cupcakes!

Let's see...what else. I'm typing this on my beautiful sunny back patio, which is pretty cool. Other than that, we are just trying to keep up with wedding plans, honeymoon plans, working, taking care of the house (The Boy is drywalling the basement right now), and doing all those regular life things. Add in the MS, perpetually numb hands, and medication side effects, and it's pretty much a neverending party. WOO!

Oh yeah, I also bought an at-home chemical peel and gave it to myself today. Swear to God, the label says that if it's burning, it's working. No pain, no gain - I guess.

Brokeback E. Spat

For Christmas, The Boy and I went to visit my parents. If you're a reader from way back, you remember they live in the mountains in southern Oregon. They were very excited to have us there for nearly 10 days, and planned LOTS of activities for us. Including riding ATV's. As it turns out, shifting with my hand while braking with my other hand is not really my strong point. During my "training session", there was a point where The Boy and Daddy Spatula were yelling "HIT THE BRAKES! HIT THE BRAKES!" I was yelling "WHERE THE HELL ARE THE BRAKES???" You would think the first part of the training would be where to find the brakes. But, you'd be wrong.

Exhibit 1: The Hedge
















You don't actually "know" me in person, but you can trust me when I say that the hole in the hedge is the exact shape of an E. Spat on an ATV going full speed.

So, even though any person with an IQ above freezing would know that I am clearly not cut out for the high adventure of ATV riding in the woods, we set off for just such an adventure.

To make the long story short...shifting from neutral into first while accelerating will definitely cause the ATV to go straight backwards onto the back wheels, throwing the rider off onto the rocky path. Hard. And, just as an aside, if this ever happens to you and you hear a giant "CRACK!!", it's not your helmet hitting the ground, no matter what everyone tries to convince you. It's your T-10 vertebrae breaking. Just so you know.

Exhibit 2: My T-10 vertebrae
















I didn't go to the hospital for nearly two months. It was two days before Christmas, I didn't want to make a scene and ruin everyone's holiday. My mom was already crying when we showed up from our ride with me covered in dirt and barely able to walk or move. I decided I had pulled a muscle and left it at that. When it still hurt at the end of February, I went to my doctor, had an X-ray, and...well...I guess the picture speaks for itself.

It's feeling pretty much better now. The ortho I went to told me it would probably take 6 months to heal most of the way, and hopefully I won't need surgery. Going to the ER probably wouldn't have changed anything - it still would have been a wait and see thing, but I would definitely have gotten better drugs. No one could believe I survived this on Aleve and a couple Flexeril the first day or two that my mom had left over from a hip injury. It hurt. Bad.

So, the moral of this story, if there is one, is that ATV's are dangerous and I'm a bad shifter. And also, I'm a total badass because I broke my back and didn't even cry!

Out of towners

We decided to make a spontaneous trip to Oregon to see my dad for his 60th birthday, which was yesterday. We flew in, showed up, and surprised him pretty good. It was fun. Anyway, since I have been pretty much the world's least reliable writer over the past few months, I thought I should say...no I haven't disappeared, yes I will be back in a few days, and no my home wireless internet isn't working. Again. Oh, you didn't ask? Well, it isn't. Just so you know. Not that I'm bitter.

In other news, my mom took us to lunch at her golf club today. The food was horrible. Not just run of the mill not that great. Truly awful. I actually didn't eat past the first bite because I knew I would be sick later. They did give it to us free. Yay. Too bad they couldn't have given it to us...say...edible. But, hey...whatever.

Third time's a charm (you know that's what you were thinking)

That's right guys - I've been gone for, like, six months. Sorry about that. The short version of events is that I was dealing with my MS and medication side effects, then I got engaged, , then I broke my back (oops!), then we bought a house, then we moved, then I made like a billion business trips. Whew.

Moving in order of occurence, I'll start with the engagement. It was very romantic...and, of course, there's kind of a funny story.

So, The Boy took me to Victoria, Canada, for the weekend (this is in mid-October). On our second night, we decided to walk to this restaurant right on the harbor and have dinner. As we're walking, we come across a girl in a motorized wheelchair. For someone in a motorized chair, she was moving at exactly the speed of totally stopped. We stopped to talk to her, and it turned out, the battery in her chair had died.

The Boy, being the nice guy he is, asked her if it would be OK if he took a look underneath the hood (metaphorically speaking), to see if he could help. She said "sure", so we spent a good half hour trying to get the chair moving. While The Boy is trying to become an expert on Canadian motorized wheelchair technology, I start talking to the girl. It turns out she has MS, and has just suffered a severe exacerbation that left her unable to walk. She was 26.

The Boy offered to disengage the emergency brake and push the chair to the restaurant we were heading to, where she said they would let her sit at the bar and recharge her battery. Unfortunately, the e-brake did not have a "disengage" setting.

To make a long story somewhat shorter, The Boy pushed this girl, in her motorized wheelchair (a total of at least 250 pounds between her and the chair), UP HILL, for probably close to a mile. We got to the restaurant and she pointed out her apartment, just at the top of the hill. So, yeah, he pushed her the rest of the way home. Swear to GOD.

Meanwhile, the boy has developed a certain, shall we say, sheen. He won't take his jacket off, no matter how many times I ask. Finally, on the way up the last big hill, he handed it over. He told me later he was terrified I would feel the ring box.

We get back down the hill to the restaurant and walk in, both of sweating like pigs. The bartender goes "Is it raining outside"? Uh, no. So, we tell this story and get a free round of drinks. Finally, we head up to the balcony and eat a lovely dinner overlooking Victoria Harbor. After dinner, The Boy proposed - with the ring of my dreams and two colors of pink M&M's printed with "E. Spat, will you marry me?" (half the message on each M&M, them's a lot of words!)

So, we came back engaged, and with an added bonus of good karma.

Also, at another bar we said we had just gotten engaged, so the guy next to us bought us some shots. After we did the shots, he goes "So, are you pregnant?" Yes. Yes I am. My baby loves Jack Daniels and secondhand smoke! Who asks that?

And, perhaps the best part - which I learned later - The Boy sweat so much that he had to go to the bathroom for probably 15 minutes to find two M&M's with the words still on them. Sweaty M&M's are so awesome!


In the next few days, I'll tell the scintillating story of how I got a compression fracture of my T-10 vertebrae.

I'm considering coming back.

Thoughts? Is anyone still checking for updates? Drop me a line. I haven't checked my email for nearly 6 months (I suck), but I miss writing, and I miss all my pals. I'm still not practicing law, but I am getting married, and I am doing really well. Tell me if any of you are still out there!

I promise!

I am CRAZY busy attending a work conference, and have been doing a bit of traveling, both for work and for fun. I am going to answer the question in the comments below about working through the fatigue associated with chronic illness, particularly MS, and I have a couple of other ideas percolating in the brain. So, by the end of the week, when I'm caught up at work and not feeling QUITE so much like a crazy insane person, I will be back with new posts.

In the meantime...good news for those with MS - a possible vaccine.

I heard I was in town.

I'm not dead or anything. Just very, very, very busy. I had to go out of town for work for a few days, and I've been having a lot of MS related fatigue. So, IF I'm able to make it through a work day, I come home and lay on the couch until I go to bed very early. Isn't life fun?

Anyway, not much else going on besides work. The Boy's mom's birthday was yesterday. I made a lemon cake with raspberry filling and lemon buttercream frosting. It was quite delicious if I do say so myself. I also bought pink candles. With glitter. I think she loved them!

Next weekend we're going to see my parents, so I'm getting excited about that. It makes me feel so much better to be around my mom and dad. I wish they'd move closed but I know they won't. They're very attached to Retirement-vile.

So, I just wanted to reassure everyone I'm not dead or anything. But, not much to write about except boring stuff or depressing stuff (Hey guys - my left arm and lower right leg are numb! YAY!).

Sweet revenge

I promised myself I wouldn't talk about work on here, so I won't. Except to say there is no better feeling than knowing you FINALLY have the power to make a truly heinous person's life just slightly more miserable.

Other than that, life has been moving along in that way it does. Fast mostly, with moments of extreme fatigue. Saw the neurologist today...he seems to feel I'm tolerating my meds very well, and will have me back for a checkup and a liver function panel in October. I thought he was doing my first liver panel today so I haven't had a drink for several days...WASTE! Three more months? Think of all the whine opportunities I missed this week!

Anyway, we saw Harry Potter last night. I haven't read the books (for shame, I know!), so the movies are always a big surprise for me. It was good...but slower and darker than the others. I guess they're setting us up for the last two (or three...or whatever).

I'm off to surf the couch. We've recently become addicted to Last Comic Standing, so I have to get ready. And have a drink because, shit, I have THREE WHOLE MONTHS to study for my liver test!

Badonkadonk

Tonight was injection night at the Spatula-Boy house. Because he's so awesome, The Boy has been very helpful right from the beginning with my medication. Normally I do my own injections, but every third time (Thighs, Abdomen, Butt), he has to help me and do my injection for me. Right in the butt. Needless to say, this has caused quite a few chuckles around the house.

"Are you ready to inject me in the butt?"

"Coming dear, just getting the warm washcloth ready!"

Yeah...you have to rub the injection site with a warm washcloth for five minutes after to diminish site reactions. It sorta works. Mostly I have a WHOLE lot of pink polka dots on my thighs, stomach, and butt.

Anyway, tonight was butt injection tonight. We got everything ready and The Boy cleaned off the area with an alcohol wipe. I felt him doing it and then...the following:

"No, that's too high. Move it down!"

"Here?"

"No, to the fat part!"

Silence......

"I mean, the really fat part!"

To his credit, he didn't laugh until after I started. And, I got my injection in the really fat part. Woo!

Who wants a moustache ride?

Here's one great thing about MS. When I got my first brain MRI I discovered something very important about myself. Namely, I might be a TAD claustrophobic. Although, I've gotta tell you, I defy anyone to get into a plastic coffin with the equivalent of a catcher's mask attached to your face and feel really great about it. Add in the disembodied voice in your ear telling you to PLEASE not move and the horrible sound of the giant magnet irradiating your brain cells, and it's really awesome.

BUT, the upside of this situation is that when I was told I needed a second MRI for my spinal cord, I knew just what to say.

Hand over the drugs, biatch! I mean, Dr. Biatch...

So, because of MS I got to have my very first drug experience. I admit it, I'm a big old goody two shoes. Between that and never having been sick before so not having access to prescription meds, I had never really had a truly great high before. Enter...my new best friend Valium.

Before my spinal MRI I took a couple Valiums and The Boy carted me off to the hospital. By the time we got there I was in a full-on giggle fit. The radiology tech gave me the form to fill out before the MRI and I had a FINE time. It has a little drawing of the front and back of a person. You're supposed to circle where it hurts. I drew antennae, pointy ears, a smile, and a tail. Oh yeah...totally stoned.

Then, the best part happened. As I was getting situated on the little board they use to shove you into the coffin tube, The Boy leaned over to look in the machine. Since I wasn't *IN* the MRI machine, he thought it was off. Yeah. Not so much. The giant magnet is ON. Always. It literally sucked the glasses off his face. Right. Off. His. Face. I laughed so hard I almost died, the radiology tech had to go in the machine to retrieve his glasses, and he was, I think, happy to have provided me that level of comic relief.

So, anyway. If you have to get an MRI anytime soon I highly recommend the taking the Valium train to Happy Town. Really.

In other news...The Boy and I just went on vacation to Puerto Rico. Here's a pic of paradise. We stayed on Vieques Island. Sigh. It was...heavenly. PS: Please keep your crabs off the island. Geez.