Monthly Archives: October 2012

Future Generations Could Be Stripped of Mutations

Human genetic modification experiment in Oregon shows promise, risks, experts say

For all MSers and those who care and are interested in the genetics of MS and other related diseases this is a MUST- READ. The link can be found on my MS and Genetics Info list to the right. I’ll post new info as it breaks!

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Ringing Rocks

Needless to say when I awoke from that dream I was depressed. Heck! You were depressed just reading about it. Don’t worry, we’ll have more fun with that in my post on MS and Depression.
What’s most urgent right now is that I’ve got to take matters into my own hands! I just woke up from that nightmare and I’m going to Ringing Rocks right now dammit and nobody is going to stop me! Not even…ME. I use to just jump up and go do things because I loved the outdoors and adventure. I’ve decided…I’M GOING TODAY! So what if I need a cane, so what if it might rain all day, so what if it’s a long way and I don’t know where I’m going, just don’t drink ANYTHING(or I might have to pee in the woods and there’s poison ivy) and use the GPS. And for God’s sake, take my camera! NOW LET’S GO!
Destination: Ringing Rocks Park, Ringing Rocks Road, Upper Black Eddy, PA 18972

Mission Accomplished: My goal was simply to GET there! To not let a few obstacles keep me from going out the door. Here’s the report, after a long treacherous mountainous drive (that did make it more fun) I could go no farther than the parking lot. Problems were, one hand held the camera, one hand held the cane, one hand was still needed to balance on rocks as I climbed across them (maybe two) and still another hand to hold camera steady for shooting photos.
For today…JOB WELL DONE! and in my best TERMINATOR voice “I’ll Be Back”.

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Filed under MS and Depression, MS and Exercise

Tide pooling and “The Dream”

My grade school sweetheart is there, Gregory Chatmen, at the vegetable mart. He lives in Southern California now and so do I, (not together Honey) San Bernardino. His kids are visiting and complaining about being bored and like everybody else he’s trying to stretch a dollar, and it hits me! I’ve got the best idea! We throw some water in the cooler in the trunk with some sandwiches and head for the beach. Not the beach really, but this rocky area I know about…agh, you’ll see I tell him. The kids are moaning because we’re not going to Disney. We just turn the radio up to drown them out. We go tide pooling! At the right time of day you catch the tide going out and it’s left these really amazing life forms in little pools among the rocks. When the tide comes back in, it will carry them back out…if they’re lucky. The kids were stoked! They are all over the place. The only rules are, don’t step on the life and don’t touch it. It’s all delicate and some of it may be poisonous (stingers and such). My all time favorite is the beautiful purple iridescent slug that’s as long as my foot. I can’t help but wonder , if this little bit is what washed up, what other beautiful fascinating creatures must be out there under the sea? UGH! I’ll bring my camera for sure tomorrow. Groggy… No there’s that other place tomorrow. Uhh, My mind wanders to the mountains, I see trees… I want to see, yeah…Ringing Rocks, that’s it! Its close, right? I’m going there today!

I look at the clock. It says 4:00 a.m.
That’s rain against my window and it’s dark.
I am dreaming.
Oh and…duh, I have MS and I haven’t seen Gregory Chatmen since grade school.
And…I’m using a cane now and I don’t live in CA anymore.
there will be no tide pooling.

 

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The Farmers Market 2012

Ahhh, the Amish girl is in her spot like she is every week in full garb with her fresh breads and pastries. Yes! and my friend from the Caribbean spot that has the Vegan food I like. They’re all still here. Kevin has brought me back to the farmers market.
He says “look honey, here’s the corner, you’ve got to get out here- quick (he says gently) there are cars behind me and the lights gonna change. I’ll park and be right back!” I can’t think about it or I know I won’t move fast enough or AT ALL so I just do it! Before I know it I’m on the sidewalk by a tree. I’m not hugging the tree (I realize how crazy that would make me look) but I’ve checked it out and I’m close enough so that if I need to use it for balance it’s there. I don’t move an inch.
Kevin finds me. He’s moving fast “Honey I need you to SLOW DOWN” How often does a woman say THAT to a man? (wink, wink) He’s been running, I could tell from the couple getting up off the ground. He was in Mario Andretti Mode trying to get back to me. I take his arm and we walk across the street like an 80 year old couple.
As we carefully step up onto the curb of the farmers market I slow down even more, I stop to get my bearings. It’s all coming at me at once. I try to keep moving, I feel his hand gently pushing me into the crowd but there’s so much to manage. First there’s the sidewalk and it’s unevenness in the changing gradation of the concrete while at the same time there are these feet walking down there. Then there are the children and the dogs on leashes and people sitting in the grass near us, or is that far away? I can’t tell. They seem to be sitting on the ground to me, I may step on them, Oh my goodness I am, they’re there! I stumble, reach…Kevin. The flowers, the tents, the colors, the tables, the crowds, the food, the smells, the talking, the music! OMG…Please just get me out of here!
I don’t know what I said to him. I think nothing but he leds me to a clearing. Last year I would have been all over the place with my camera, and without Kevin. I’m a Photographer, you don’t bring you’re husband…that’s lame! We have the best farmers market in the world. Every week we have special events, tomatoes, or garlic, and every week special activities for the kids. It’s a photographer’s playground.
Our Sat. mornings were so different. I’d kiss him and go rushing off to the market with just my camera and change for parking. He’d be off to yoga with a mat and a water bottle.
Today, I’m exhausted. He takes me home for a nap. He hasn’t been to yoga in a year.
We’ll be back next week.

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Filed under Riding Out a Relapse

Teenage Caregivers and MS

The first thing he said when they got me in the chair was “I’m glad you weigh less than Grandma!” when we gave him the look of shame, he quickly said “no, no, I just mean for maneuvering is all!” and off we went to the mall. She and I were on a mission, we had it all planned out, he was just there for man power and lunch at Chipotles. We’re in our favorite department store on the second floor nearing the end of the aisle where there’s only one thing ahead of us it seems and he finally says, “Where are we going?” She and I together say, “Lingerie”. He says loud and in shock, “LINGERIE?” Now surrounded by bras…big ones, lots of them, eye level, closing in on him, he says, “but why! for what! for WHO!?” We’re both laughing hysterically! Clearly he doesn’t see what could be so funny. When I catch my breath I say, “We need to buy your sister some underwear”. He shakes his head and says, “why didn’t you just SAY that?”
Next stop Victoria’s Secrets.

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Filed under MS and Family, Uncategorized

Fatigue- The Anti-Sex

We hadn’t had sex in a week and he had very subtly brought that to my attention say… the last SIX days or so! With this in mind, I try to manage my fatigue today accordingly… I go to the gym and get on the bike for 15 minutes (I’ve worked up to that) and leave. I get just a few things from the grocery store making sure not to stay too long. Just enough for dinner. I’m exhausted. Damn, a girlfriend calls and I excitedly get carried away and talk to her for 20 minutes instead of 5. I’m winded. Now I’m crashing.
Its 7:00p.m., my husband is home. I don’t cook dinner. He tells me to go lay down and fixes himself soup and a salad… I sleep. I awake, have dinner, and watch some TV with him, talk about our days, the kids, and various family matters. By the time we clean the kitchen, shower and go to bed, I’m exhausted, and the fun begins.
I turn my back to him, and then comes that familiar rub on the shoulder. You know the rub. The one that makes your mind start to have a very loud conversation with itself “I KNOW it’s been a week but there’s not a cell in my WHOLE body that’s up for this…not ONE, and I haven’t faked anything in a million years and that’s awful anyway for EVERYBODY! I’ve just got to tell him, there’s no other way but HOW? I should have told him at dinner that I’m too tired again I’ll never lie or have sex when I don’t want to have you ever done that it’s disgusting I’m too special for that so now I just have to break it to him it’s going to be a week and a “…the rub continues and he moves closer! He must not hear my thoughts. There’s a problem here!
The rub goes to a full touch and he actually says something! “Kiss me,” “WHAT!?” I say. I can’t believe it. I turn over to face him in all my nakedness “WHY would you say that?” (because surely you MUST know how I feel) Him, really confused now “ummm because I want you to? because I like it?” Me “But you must know what I’m over here thinking, you MUST feel the ANTI-sex chemicals coming out of my pores, I’m sure it’s like a pheromone or something that’s attracting you. You can even actually see it. That’s weird. Don’t you think that’s weird that I’m sending off anti-sex signals and you’re mis-reading them as real sex signals?” As he backs away from me he says,”No, the more you talk, they’re coming out as real anti-sex signals.” I think this is hilarious! I allow myself to get lost in the laughter. I am turned on by his humor, patience and perseverance. We go on to have amazing sex.

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Filed under Awesome Sex, Long Loving Marriages, MS and Marriage