Friday, May 1, 2009

Please Welcome MS Bloggers I've Recently Discovered

During the past month, I've encountered many new-to-me MS bloggers. I'd like to introduce a few of them. Take special note of the first blog on the list.

Joyce Nelson, President & CEO of the National MS Society, has started a blog!!
Mike doesn't have profile available on his blog. So you'll just have to visit.
"I was trying to think of some super cool topic to talk about so that I don't just ramble, but I guess I will talk about how in life things are thrown at us, and you have to learn to roll with the punches. So obviously I never expected to get diagnosed with MS. I guess no one really assumes they have it until a doctor tells them. Some people I have met talk about how they had a inclination that they had MS before they were truly diagnosed, but I know for me, I was in utter and complete shock."
"A place to think, hash over, explain, and explore my days living with Secondary Progressive MS. Thoughts on faith, surviving, and where my life is now."
"I was diagnosed with MS April 14, 2006. After the birth of my daughter. I had a hard time walking, things on my right side often became numb and I began falling alot.... Since my initial diagnosis I have become stronger mentally, emotionally and physically. Through slightly modifying my activities I am leading the life I thought MS would rob me of."
"Oh! The joy of social network sites. The fun of facebook, twitter, et al for me is finding all those other people called Dave Carey...what do they do? well do they do it?....found a guy in Florida who combined our mutual name with a mutual career...what you don't expect is a mutual diagnosis...poor old Dave many musicians called Dave Carey could possibly have relapsing remitting multiple sclerosis? Well, two it seems. We should start a band - we could call it MS vs Dave Carey...In fact I have now resolved to trawl the world for other potential band members of MS vs Dave Carey."
"I'm a nurse, writer, painter, vaguely creative soul, former pet owner and optimist. I'm also a person with MS. There are a lot of us out there. Coping with Multiple Sclerosis is never easy - this is my cheery account of how MS has given me a wonderful gift....or alternatively, how MS has #%@^!%%!'d up my life."
"My name is Tara. I have been married for almost 16 years. We have 3 children. I was diagnosed with Multiple sclerosis a little over 2 years ago and what a whirlwind it has been. I think I went from a "Type A" personality to a "Type Z" personality. It's like life started over for me and I have to learn who the new me is while life continued for the rest of the world and they think I am the same old me."
"My name is Jason DaSilva - I live in the East Village in New York. I am 30-years old and have MS. Here is my daily life, research, and thoughts…"
"I have found the computer very beneficial to my mental well being and keeping me connected to the world. In my past life before MS I was an R.N. It has been quite an adjustment losing my career and that identity. I do not give medical advice. Believe me with my brain you don't want any from me. LOL."
"curious about everything & everyone....some call it 'nosey'...(the poor misguided souls!)I have a gorgeous 25-year old daughter,& oh since i was 29...and THAT part of my life REALLY maybe ALL of it's sucked for a LONG time, and I just don't wanna admit it..."
"I am a stay at home mom of 7. I was diagnosed with MS in 2004. I had the pain pump put in and life is getting much better. Just a wife, mom, daughter, sister, christian, and all around crazy lady. Hope you enjoy the ramblings of a madwoman."
"Preston Walker, a Forth Worth police sergeant, has taken his battle with multiple sclerosis to Costa Rica to begin experimental stem cell treatments. This is his journey."
"On the other side of 50, I live in the Pacific Northwest with my husband and our two nutty labs, Max and Molly. Politically, I'm proud to be a liberal, for though I am all for fiscal responsibility and accountibility, I also believe that a society is judged by how it treats its young, old and infirm. I'm currently learning to live creatively with my multiple sclerosis..."

the dirty truth.

It's been a while since I've had much to say. Been lost in my mind, or out of my mind I guess I could say. So much happens when you stop paying attention. I wish i had a video camera to record every second of every day. There is one thing I know right now.. which is that I am asked at least 5 times a day, how I am feeling. It doesn't bother me at all.. what bothers me most is how robotic my response has become. GREAT! FINE! BETTER! or a variation thereof.. I wonder sometimes if people really want to know the truth... the brutal cold truth... I wonder if I should tell... it feels sometimes as if I'm holding this great secret.. but honestly sometimes I'm not even sure how I'm feeling today. So here it is.. the truth, so far...

I wake up every day to a new day. The meaning of that is paramount to anything I've ever said before. Everyday is new. Today is different than yesterday, sometimes better, sometimes different, sometimes worse. The thing is, that when I open my eyes and stretch my arms, I'm cognizant of the way it feels... the way everything feels. I wiggle my toes.. and it's in that wiggling that I find my breath stops, and my heart beats... for a split second... I worry, and I feel.. how are my toes today? Can I feel the blanket against them? Are they moving? Does everything feel right? If everything checks out, I smile wide, give myself a high five and I return to breathing. Thats just the way it goes now. I look in the mirror every day and I look fine. Good even. I've lost a lot of weight, my skin is glowing, my hair has grown.. I'm getting healthy.. and I cant help but question myself.. I cant help but think.."you look fine, now act fine..".. the thing is underneath this skin and bones.. these little antibodies are hard at work... moving and buzzing and tearing me apart. I'm under attack.. and I can feel it happening. I don't feel right to say the least. When I walk.. I walk with a sway. Like Im drunk.. the room spins and I lose my balance.. and I cant remember things, easy things.. I try hard.. but they're just not there... I feel like Im not there.. like Im somewhere far away.. watching me. It's weird and hard to explain... but I don't feel sharp. and I'm tired. But not the usual tired... tired like... my speech is slurred b/c it's too much work to move my tongue... tired.. like I cant pick up my arm.. tired like I just turn off and shut down... battery dead... it's unlike anything I have ever felt before. So the thing is... that in a way, I wish my outside would look like my inside.. so at least I would have something physical to see... instead I have to sit here... staring at myself.. wondering why I cant just feel the way I look.... wondering why I feel like Im a million miles away... wondering what today is going to be like... it gets tough sometimes... but look, the thing is... the REAL thing is... right now... at this moment in time... I want to stop everything... see, all the drama and the bullshit and the things I've been so eager to grow up and away from... suddenly.. I want to freeze.... cause I don't know what's going to happen when I get older... and this is it... this is the stuff... right now. I want to roll around in it and savor it, and be thankful for it and most of all... MOST of all, I want to kiss everyone on their foreheads and tell them thank you... for showing me how to live.


  1. Such a great post. and ending with thankfulness is the right attitude.
    Thanks for keeping us informed of MS blogs.

  2. Lisa - as always, a great post. Thanks for bringing these blogs to our notice. I've posted a token of my appreciation for you blog on mine. Stop by when you have a chance.

  3. Hi Lisa,

    A great post thanks.
    Just came by to say hello.
    Have a good Sunday.


  4. Did you notice that there are actually three team members named "Joyce" on the NMSS blog? Sounds like someone's being paid to be Joyce Nelson's internet presence.

  5. Thank you Stuff. I agree that the gratitude is wonderful. You should go to her blog, scroll down, and watch the one video she has posted. It moved me.

    Thanks so much Cranky!! Did I ever welcome you? I don't remember. Seems I've known about you and been reading you for awhile now.

    Thanks Herrad. I hope you are having a great weekend. The photos with Spike are great.

    Steve, I wondered the same thing. However, I've also witnessed some clumsy Twitter presence where I suspect she started an acct with one email, then probably decided to create or use a different one which would be separate from personal contacts.

    I suspect that she is NOT the admin on the blog but has been added as an additional "author." Maybe she was added thru her many email addys. Or, maybe, there really are a number of "joyces" who contribute.

    I think it's probably just some inexperience and clumsiness showing through. It's an interesting endeavor either way.

  6. I sure hope you're right, Lisa. I'd hate to think this was happening at the NMSS:

  7. Lisa - you're most welcome. I don't think you've included me in one of these kinds of posts, but I presumed they were a review of blogs for those who have MS rather than caregivers.

  8. Hi Lisa! If you get a moment stop by my Blog and get your Award. Congratulations!!!! And Thank you for everything you do.