I came home from NY with one clear decision made. The next trade show I have to do is in Anaheim, CA for 5 days in January. It will be big, loud and exhausting. I'm going to rent a scooter.
This probably seems like a relative no brainer, since I came home from NY unable to do anything but crawl from the couch to the kitchen to the bedroom. But let me reiterate. I am going to rent a scooter.
This will mean I am disabled. Officially validated. Confirmed. Staggering around Manhattan like a drunken crab didn't mean I was disabled...I was just tired... jet lagged... had a long day at the convention. Saving my energy however, by renting a scooter means I am a disabled person. Yikes.
I called my sister Lisa to discuss. She was supposed to be headed to NYC next week to run a marathon; but filled me in that she had torn the meniscus in one of her knees. Ouch! So no running for her for a while. No weight on it really at all for a while. Wow! Does this mean my strong, vibrant, fit sister is disabled?
She is pretty down about it. Her knees are kind of going bad on her, and she's freaking out a little. All of a sudden renting a scooter didn't seem so daunting. If my amazing, athletic sister might need a walking device, then maybe it's ok if I do too. I'm giving up walking like a gimp, but she's giving up running 26.2 miles. I'm never going to run that race, but hopefully, she will be back out there inspiring me to always go that one extra mile.
Wednesday, October 28, 2009
Monday, October 26, 2009
SWF ISO LTR PS W/MS
I've been on many dates over the past few years ~ blind dates, internet dates, dating services, I've tried lots of things. One thing though, continues to elude me. When do you pop the old "Oh, did I forget to mention on my profile that I have Multiple Sclerosis? Oops! Ha ha!"
At what point are you 1) being deceptive 2) giving out too much information 3) Letting MS define you 4) ad infinitum
SWF; 52 years young; love all outdoor activities including sitting, looking, smiling, viewing. Recently gave up hiking, skiing, walking, running, surfing and long walks on the beach.
I used to look great in heels and a gown, but can be comfortable in jeans and a t-shirt!
I always like the a part about the long walk and then snuggling in front of of a fire. Right. Here's the MS version of that activity:
You and your date park at the beach, far away from the sand. You take 2 chairs, a cooler, a blanket, a book and some sunscreen. You struggle across the sand dunes while the items you are designated to carry slip through your fingers which are numb due to neuropathy. Every few feet you stop for a quick rest and reconnaissance of the items you've dropped. "Coming sweetums!" you sing out.
You reach a quiet spot to settle down. Your legs are burning, your head is swimming, you're so hot your limbs feel like they're connected by silly putty. Your eyes might do that little flicker thing that mine do that make me think that is what a lizards eye must see. "Isn't this fun?!" Oh yes!
As you settle in, your date suggests taking off your shorts and tank top and sitting in your suit. Hmm...how to explain the body riddled with dents from your injection sites? "Oh these!? Nothing. I was in a tiny fender bender 365 days last year". You mumble something about sensitive skin and move on.
You make it through the day, and now it's time for the long walk, then the snuggle. All day in the sun, you're now walking like the love child of Frankenstein and Gumby. "Golly, the sun has made me tired, can we just head up to the house?". Bullet dodged.
Fast forward to the couch. You're beat from sitting in the sun all day. You're exhausted from walking in the sand. Let's start the fire! Let's have some wine! Great. A glass of wine is SO what you need, but not combined with more heat and the need to be effervescent and charming. Drat!
This might be the time to spill the news. Or, come to think of it, if you haven't had the urge to confess yet, then chances are this guy isn't worth. Pour a big drink, snuggle up, and drop into a long, reinvigorating sleep.
At what point are you 1) being deceptive 2) giving out too much information 3) Letting MS define you 4) ad infinitum
SWF; 52 years young; love all outdoor activities including sitting, looking, smiling, viewing. Recently gave up hiking, skiing, walking, running, surfing and long walks on the beach.
I used to look great in heels and a gown, but can be comfortable in jeans and a t-shirt!
I always like the a part about the long walk and then snuggling in front of of a fire. Right. Here's the MS version of that activity:
You and your date park at the beach, far away from the sand. You take 2 chairs, a cooler, a blanket, a book and some sunscreen. You struggle across the sand dunes while the items you are designated to carry slip through your fingers which are numb due to neuropathy. Every few feet you stop for a quick rest and reconnaissance of the items you've dropped. "Coming sweetums!" you sing out.
You reach a quiet spot to settle down. Your legs are burning, your head is swimming, you're so hot your limbs feel like they're connected by silly putty. Your eyes might do that little flicker thing that mine do that make me think that is what a lizards eye must see. "Isn't this fun?!" Oh yes!
As you settle in, your date suggests taking off your shorts and tank top and sitting in your suit. Hmm...how to explain the body riddled with dents from your injection sites? "Oh these!? Nothing. I was in a tiny fender bender 365 days last year". You mumble something about sensitive skin and move on.
You make it through the day, and now it's time for the long walk, then the snuggle. All day in the sun, you're now walking like the love child of Frankenstein and Gumby. "Golly, the sun has made me tired, can we just head up to the house?". Bullet dodged.
Fast forward to the couch. You're beat from sitting in the sun all day. You're exhausted from walking in the sand. Let's start the fire! Let's have some wine! Great. A glass of wine is SO what you need, but not combined with more heat and the need to be effervescent and charming. Drat!
This might be the time to spill the news. Or, come to think of it, if you haven't had the urge to confess yet, then chances are this guy isn't worth. Pour a big drink, snuggle up, and drop into a long, reinvigorating sleep.
Back in the saddle..sort of...
I spent 5 days in NYC couple of weeks back. I was working a convention and had this genius idea that it might be good to get out of Javits and enjoy some fresh, crisp, October air by walking back the 6 blocks to the hotel. Six Avenue blocks. Six l-o-n-g, hot, avenue blocks. Six Oh My Stars what kind of fresh, crisp, hell have I just conscripted myself to blocks.
By the time I staggered into the hotel lobby like a piece of flabby meat jewelery on my boss' arm, I was almost in tears. Mark, my boss, bless his heart suggested we sit and have a glass of wine and a quick bite to eat before starting on the evening line up of 2 client hosted parties. After a half hour and a nice cool glass of wine, a big glass of water and some bruschetta, I felt almost as good as new. Almost.
Cab downtown. No problem. Listen to some nice, mellow music through a world class microphone. No problem. Hydrate with lots of water. No problem. Get a cab back uptown. No problem. Stop at the corner of 59th street. Problem.
The cabbie says "Get out! Is only one block!". Mark says to the driver, "No. My friend can't walk. Take us where we need to go!" We are summarily cursed out in Sanskrit or something like it, as the driver throws the car in reverse, steps on the gas, and runs into a bicyclist. This being Manhattan, everyone from the pedestrians, the cyclist himself, and people at a bus stop are all screaming "Can't you drive you fuckin' idiot!?"" Watch where you're going!" "Wassthematterwithyou!?" until the cyclists wobbles off after a few more choice words and some good smacks to the roof of the cab.
Surprisingly, this doesn't put our driver in any better mood and he reiterates "Is only one block!". Our resolve is strong though, so he mumbles further under his breath and puts on his blinker. Now remember, we are in Manhattan. Corner of 59th and 8th. What did he do? What anyone would do ~ try to pull a U-TURN across 4 lanes of traffic at a stopped intersection. And guess what!? Shocker ~ we were t-boned by another cab. Well, this other cabbie who hit us was not nearly as calm or pleasant as the guy on the bike. More cussing and name calling (in Swahili now I think) until our driver turns to us and says "IS ONLY ONE BLOCK!".
At this point, I decide I might be able to walk the one block after all. After Mark asks him for a receipt (I kid you not ~ our company is tight about these things!) we make it to the next event. By now, it is almost 9:00 pm, close to the end of the party. I grab a nice big glass of wine (because by now I'm ready for a drink), and start snacking on cold crab cakes, soggy asparagus wrapped around prosciutto, and mushroom caps stuffed with substance (unidentified). That bruschetta seems a long time ago.
So here's the set up: I'm really tired from being on my feet all day. I can't really stand because I had to enjoy that crisp, fresh, October air and walk until I was crippled. I've had a big glass of wine. I'm kinda rattled from the cab accident. I've been eating nothing but appetizer dregs. So when the last man standing at the party suggests we smoke some weed, I think it's an excellent idea. Pot is supposed to be good for people like me with MS, and I smoked some like 7 years ago, so figure I'm due. Yes. This definitely seems like just the ticket.
Fast forward 15 minutes. It's time to head back to the hotel, since there is no one left but the catering staff, me, one other guy and the pot man. I think I gracefully twirl into the room from the patio, then think I do a perfect pirouette, and then know I land on my ass. I'm laughing so hard I'm crying, and who should I look up to see lending me a hand, but my client.
This is when I love the business I'm in. My gentle client has a laugh with me, sends me home in a cab and then tells me the next day to pretend it never happened. Much as I'd like to, I kind of think it's better that I do remember it. I must remember that the 6 block walk killed me for almost a week. Maybe I should smoke some pot....?
By the time I staggered into the hotel lobby like a piece of flabby meat jewelery on my boss' arm, I was almost in tears. Mark, my boss, bless his heart suggested we sit and have a glass of wine and a quick bite to eat before starting on the evening line up of 2 client hosted parties. After a half hour and a nice cool glass of wine, a big glass of water and some bruschetta, I felt almost as good as new. Almost.
Cab downtown. No problem. Listen to some nice, mellow music through a world class microphone. No problem. Hydrate with lots of water. No problem. Get a cab back uptown. No problem. Stop at the corner of 59th street. Problem.
The cabbie says "Get out! Is only one block!". Mark says to the driver, "No. My friend can't walk. Take us where we need to go!" We are summarily cursed out in Sanskrit or something like it, as the driver throws the car in reverse, steps on the gas, and runs into a bicyclist. This being Manhattan, everyone from the pedestrians, the cyclist himself, and people at a bus stop are all screaming "Can't you drive you fuckin' idiot!?"" Watch where you're going!" "Wassthematterwithyou!?" until the cyclists wobbles off after a few more choice words and some good smacks to the roof of the cab.
Surprisingly, this doesn't put our driver in any better mood and he reiterates "Is only one block!". Our resolve is strong though, so he mumbles further under his breath and puts on his blinker. Now remember, we are in Manhattan. Corner of 59th and 8th. What did he do? What anyone would do ~ try to pull a U-TURN across 4 lanes of traffic at a stopped intersection. And guess what!? Shocker ~ we were t-boned by another cab. Well, this other cabbie who hit us was not nearly as calm or pleasant as the guy on the bike. More cussing and name calling (in Swahili now I think) until our driver turns to us and says "IS ONLY ONE BLOCK!".
At this point, I decide I might be able to walk the one block after all. After Mark asks him for a receipt (I kid you not ~ our company is tight about these things!) we make it to the next event. By now, it is almost 9:00 pm, close to the end of the party. I grab a nice big glass of wine (because by now I'm ready for a drink), and start snacking on cold crab cakes, soggy asparagus wrapped around prosciutto, and mushroom caps stuffed with substance (unidentified). That bruschetta seems a long time ago.
So here's the set up: I'm really tired from being on my feet all day. I can't really stand because I had to enjoy that crisp, fresh, October air and walk until I was crippled. I've had a big glass of wine. I'm kinda rattled from the cab accident. I've been eating nothing but appetizer dregs. So when the last man standing at the party suggests we smoke some weed, I think it's an excellent idea. Pot is supposed to be good for people like me with MS, and I smoked some like 7 years ago, so figure I'm due. Yes. This definitely seems like just the ticket.
Fast forward 15 minutes. It's time to head back to the hotel, since there is no one left but the catering staff, me, one other guy and the pot man. I think I gracefully twirl into the room from the patio, then think I do a perfect pirouette, and then know I land on my ass. I'm laughing so hard I'm crying, and who should I look up to see lending me a hand, but my client.
This is when I love the business I'm in. My gentle client has a laugh with me, sends me home in a cab and then tells me the next day to pretend it never happened. Much as I'd like to, I kind of think it's better that I do remember it. I must remember that the 6 block walk killed me for almost a week. Maybe I should smoke some pot....?
Saturday, October 17, 2009
Welcome!
Hello, my name is Erika. Welcome to my blog! You’ve probably guessed already, that I have MS. (Who says we’re losing cognitive skills!?) The world might not need one more blog (ya think?), but I'm doing this for me. If you want to read along, welcome!I’m 52 and live in La Crescenta, CA. No one had ever heard of La Crescenta until last month when the largest fire in the state’s history tore through here and we made national news. I live alone with 2 cats, Clark and Cleo; and have 2 grown daughters, Anna and Liza. I have a wonderful mom who is 89 and going strong; an older sister in Seattle, an older brother in Northern California and a total of 4 nephews. Ok, now you know all about me.
Oh yes. The MS thing. I had some very weird thing happen to my right eye when I was about 27 years old. I went to the Jules Stein Eye Institute here in LA because they thought it might be a detached retina. Hmmm....no. Maybe it’s this? Hmmm....no. Maybe it’s that? hmmmmm....no. So I was sent off to see a neurologist who pricked me with pins, hit me with rubber mallets and sent me home perplexed. Back in 1984, MS was not so prevalent? Easily diagnosed? I don’t know.
Fast forward to 2000. I’m jogging around the high school track with my young teenaged girls. Sweethearts that they are, they start teasing me for running like a 90 year old man with a dragging foot. Shaddyup! But they do have a point. So, like any well adjusted American, I quit running. Never did like it anyway.
Now it’s early 2001 and I'm up in Seattle visiting Lisa. We decided to go on a nice walk around the arboretum (it is lovely ~ go if you get the chance!). It’s an easy, flat walk, maybe a couple of miles. As we get back near her house there is this little gentle hill about two blocks long, and I tell her I can’t make it and need to rest. Did I forget to mention that Lisa is on her way in two weeks to run the NY Marathon? That’s she’s sailed through the Boston Marathon, like, 3 times? Needless to say, my sister becomes just a little bit alarmed. So on her gentle urging (YOU BETTER GET THAT CHECKED OUT SIS!) I went to my doctor. He sent me to a neurologist. The neurologist sent me to the MRI. The MRI sent me to the lab. The lab sent me back to the neurologist. He finally gave me something. A diagnosis of MS. WTF!?
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