Joyce Nelson, President & CEO of the National MS Society, has started a blog!!
- My Multiple Sclerosis and I by Silent Mike
- 20 With a Side Dish of MS by Stephanie
- Grace_2_Wheel: My Days with MS by Janine
- Stronger Than Multiple Sclerosis by Megan
- Daved and Confused by the Dave Carey who is a musician in London on Twitter.
- DA's MS Mumblings by Dabble and the Mad Sow
"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."
- When I Walk by Jason
- GUMBO by Kelli
"curious about everything & everyone....some call it 'nosey'...(the poor misguided souls!)I have a gorgeous 25-year old daughter,& oh yeah..ms since i was 29...and THAT part of my life REALLY sucks...no. maybe ALL of it's sucked for a LONG time, and I just don't wanna admit it..."
- Breathing Without A Reason by Sandy
"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."
- Delving Under the Covers by Charlene
- Whiskey Straight: MS Diaries by Genny whom I also found on Twitter. I think you will enjoy this post of hers from January.
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.
Such a great post. and ending with thankfulness is the right attitude.
ReplyDeleteThanks for keeping us informed of MS blogs.
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.
ReplyDeleteHi Lisa,
ReplyDeleteA great post thanks.
Just came by to say hello.
Have a good Sunday.
Love,
Herrad
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.
ReplyDeleteThank 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.
ReplyDeleteThanks 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.
I sure hope you're right, Lisa. I'd hate to think this was happening at the NMSS: http://www.theonion.com/content/video/more_american_workers_outsourcing.
ReplyDeleteLisa - 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.
ReplyDeleteHi Lisa! If you get a moment stop by my Blog and get your Award. Congratulations!!!! And Thank you for everything you do.
ReplyDelete