excerpt from wheelchair kamikaze

What honest words:
"I decided, finally, that asking for help simply keeps one from being helpless, and does not represent capitulation or weakness of character. Obstinately struggling with the lid of a jar or with the clunky zipper of a winter coat is just a waste of time, and the biggest lesson that MS has taught me is that time is far too precious a commodity to waste. I can't say I'm ready to spend my life relying on the kindness of strangers, but I can no longer afford to go about avoiding such kindness, either. When all is said and done, we're all in this thing together..."
From his Feb 26 post

I know Mom knows this, as the kindness of strangers (who are no longer strangers after nearly 15 years) sustains her.

There's also a comment on Marc's post about surprise "gifts" MS gives - though I don't have MS, Mom's MS has given my siblings and I many of these gifts, unfortunately at her health's expense. Over the course of our lives, we've grown up faster, stayed closer to one another, known our grandparents (granddad and "grand" mother), loved more deeply, been more grateful, considerate and caring than any group of four kids I know. We've also been angry, hurt, defensive, alone and helpless - but nothing compared to Mom's experience over the same time period. I miss conversations with her.

funny folks re: MS

Marc blogs and makes videos with his wheel-chair mounted camera (full speed ahead!) http://www.wheelchairkamikaze.com/ And he's modest - love him! He says his blog is one of the "most gratifying and humbling experiences in my life."

I don't know jpmetz, but I love her already! Check out this video.

And darn it there was one more. What the heck was it?

hodge podge

Houseguests last night were great! So nice to have friends around. Laura is coming this Thursday from the bay area... snowboarding Saturday.

Going looking at houses again tomorrow and hopefully also Sunday... the pressure is on given the soon-ending tax credit and FHA mortgage rate hike! I hope we find something we love in the low end of our price range.

I'm glad to hear that, according to Canadian MyMSJourney, "CCSVI supporters don't want to alienate the medical establishment or give false hope" to people living with MS by calling CCSVI a cure. More research is needed.

living off MS

CCSVI summary from direct-ms.org. I believe that the "second camp" (researchers, neurologists, big charities) is slightly mis-characterized by the tone of "living off MS" though I've been known to take things out of context. Living off MS seems so unpersonal. I know of several researchers out there working  to find a cure because they care about people living (or passed away) with MS. There are many neurologists who have MS - namely William, featured in the MS Awareness Week 2010 public service announcements. And the National MS Society's vision is a world free of multiple sclerosis... which is why I'm here working to end a disease that ravaged my family and stole my mother's life. A cure now won't help her but will prevent other families from going through what mine did. I guess I don't see that as "living off MS" but as passionate drive.

beaver creek

Back at work after a wonderful long weekend of friends and snowboarding! My new boots and adjusted bindings/board set-up is fantastic - making me really confident on the slopes for once. Didn't hurt that it snowed almost the entire time we were there and I love Beaver Creek! Our friends are coming down the mountain today to spend the evening and night with Jesse and I. Hopefully the roads won't be as bad for them as they were for us (or as they were for them on Thursday night heading up). Jesse hurt himself on Saturday so we didn't ride yesterday; I'm glad because we got home at a decent hour and had the afternoon to reset before the week began. Will post photos when I have them!

visitors and social rules

Our friends Rob and Tina are coming from San Diego TODAY and meeting their good friends (another couple from Chicago) to drive up to Vail / Beaver Creek area tonight. We're joining them tomorrow morning bright and early for snowboarding! I got new snowboarding boots last Saturday - great price on a great brand - after selling my too small ones on craigslist. I think I'll make acai bowls before we get on the road; we used to really enjoy those in OB. When we have friends around I have to remember how to be social beyond my colleagues, Jesse and the world wide interwebs. Hope I can do it...

I'm finalizing our personnel online social networking guidelines in the hopes that we can roll them out quickly and get our folks mobilized to spread awareness of our cause. Yesterday I found that IBM has great employee social media guidelines posted online - and they helped inform my strategy - thank you! I want our guidelines to be a lot about suggestions, encouragement and experimentation, and not so much about rules. There have to be rules though - but most of them are just common sense.

The place we're staying in Beaver Creek has a hot tub...

house hunting

Today Jesse and I are going looking a houses! Honestly I'm not terribly excited about any of them - but we have to start somewhere. Our mortgage broker gave me access to a database to look at listings where I can favorite, add notes and/or discard properties. I'm loving it. I just wish it had a way to filter by lot size. Any lot less than 10,890 square feet (.25 acres) has to have other benefits like backing up to a park or mountain views or something. Even a smallish house on a big lot would be nice. But a big house on a huge lot would be best.

Last night since we didn't have hot water (can't do dishes), we ordered in for our Valentine's dinner. Jesse had been in So Cal over the weekend (he got his burrito fix at Livingston's) and didn't want to go out for dinner - neither did I because it's too nuts on Valentine's. ANYWAY, we ordered in from The Rebellion which has gluten-free pizza crust and vegetarian/vegan toppings. It was pretty darn good! At least now I know that when we order pizza for delivery there's a place that I can enjoy too. They also deliver burgers (which Jesse likes because they always used to order burgers for delivery from PDQ in OB which is no longer in business - even though he doesn't eat burgers).

rejection

I went to a round-table discussion about the executive and professional MBA programs at DU last week; I am considering the executive program. It’s 18 months long, every other Friday and the opposite Saturday. It’s expensive (though I may be eligible for a grant based on working at a non-profit) and will be time-intensive. I’m thinking about it…

It brought up feelings of rejection from my two unsuccessful rounds of application to top-tier full-time MBA programs. Great undergrad GPA, a GMAT score any mother would be proud of, many years of varied work experience, awesome recommenders and solid essays. Seriously, who wouldn’t want me? My first year I was waitlisted at four schools and denied at four (none the four waitlists panned out). Second year I applied to three top-tiers – all denials. And now my test score is expired AND we’re hopefully buying a house (so can’t move for me to go to school) AND I probably should think about starting a family in the next three years so I’m not an elderly mother. I’m angry that I didn’t get in. Angry that that phase of my life is gone. Angry that the admissions of part-time, fully-employed and even executive programs are not discriminating enough for my liking. I’m going to have to let go of this anger before I can give enrolling in any MBA program any more thought.

just Beth, laughing

Last night I reached out to a handful of bloggers who I follow and who write about multiple sclerosis. While I had to approach them as a representative of the Society, I also shared that I personally care about MS, treatments and ultimately a cure (and why). I have to admit that I was nervous in approaching them since the Society has been the subject of such criticism and there are a handful of people out there who vocally disapprove of everything the Society posts on social media (in a mean way!). I want them to know that I'm just a girl (a real person) who's lucky enough to get to put my brain to work for my heart's passion. And I know that the Society is actively pursing all opportunities that can lead to better treatments and to an ultimate cure of MS. The three bloggers who responded were friendly - whew!

I told one blogger, Marc, that my mom has struggled with progressive MS for many years - and that she always used to say “we can laugh or we can cry” and we chose to laugh. And he responded “I like your mom's attitude. Reminds me of the old saying, 'laugh and the world laughs with you, cry and you cry alone'...”

Though I just watched a long video on primary progressive MS, I'm trying to laugh (crying alone sounds like no fun). I found Mom's “Me and MS” essay on Sunday when I cleaned out the filing cabinet - I'll share snippets in later posts. One section is about laughing when you should really be crying.

excerpt from Multiple Sclerosis Caregiving

Chronic cerebro-spinal venous insufficiency (CCSVI) has been popping up all over the media - theorized as the cause of MS. Correcting the insufficiency has halted the effects of MS in several cases. While I hope it IS the answer, it needs more research. Here are Rick's thoughts about his wife:
I hate that she has trouble walking and can’t run, that words don’t pop out quickly the way they once did. I hate that she has no stamina and that she takes medicines without immediate reward. I hate that she wakes most days with intense headaches. I hate that she can never go as far she wants for as long as she wants.
I hate Multiple Sclerosis. I flat-out, passionately hate it.
And so with tears behind my eyes, I pray the researchers exploring CCSVI are close to finding answers to questions about the cause. And I pray real, effective treatments will follow.
I’m waiting with tears behind my eyes.

getting the mail on a cold day

Luckily, my niece Lila has a shopping cart to do it.

excerpt from Iraq

Update from my cousin:

The other main focus of mine have been humanitarian projects.
There are two areas that I am focusing my efforts on. The first are micro grants for local business. These micro grants are for up to $5000 and are meant to help an business owner get over the initial cost of either starting up or expanding their current business. This will then help the community as a whole. For example, I can give a mechanic money to buy more equipment, like a floor jack, a set of tools, and an air pump, for his shop. He will purchase these items with the money we give him from the local economy and will then be able to serve more customers. Because of this, he will have to hire more help, thus employing more locals. They will then be able to support their families and support other local businesses. This small grant, that they do not have to pay back, will actually help multiple families when all is said and done.
The other area that I am concentrating my effort is helping the local schools. There are many schools in our area that are in dire need of help. Many of them were built around 50 years ago and have not been worked on since. Unfortunately, it does not appear that they get much support from the Ministry of Education. This is definitely one aspect where those of you who have asked can definitely help out with. What I am working on are projects that will help for years to come, not just temporary assistance. For example, instead of purchasing school supplies like crayons and pencils for the students, I am having broken doors, windows, and ceiling fans replaced. I am working on an interactive list to post on the internet that you all will be able to look at in terms of ideas of what is send and also check off so that we don’t get 100 posters of the solar system but no posters of the water cycle. There will, hopefully, be a place where you can also make suggestions of things to send since I am sure you all have some great ideas that I would never think of and it will hopefully spring more ideas. There are schools for all ages here, from kindergarten to high school. For the high schools, the school administrators all mentioned their lack of any type of science lab. Even though I think it would be much more beneficial for us to donate posters of different body systems (like the nervous system) than a ream of paper, candy and little toys are still appreciated by the little kids. Like I said, I will try to get that list out to you shortly. Here is a very interesting OpEd about this very idea written about Haiti: http://www.cnn.com/2010/OPINION/01/19/frum.aid.risks.benefits/index.html?hpt=T2

and a photo (Eric is on the left)

first friday in February

I'm glad it's Friday; it's been a busy week!
- Sunday evening after our company left, Jesse and I met with a realtor to talk about potentially buying a house in the next three months. Exciting but overwhelming. I hope we don't struggle too much to find a place close enough that I don't have a wicked commute, but with enough space and quiet that Jesse is happy.
- Monday morning I found out that Mom had a high fever (not responding to tylenol) and a rash, but thank goodness the antibiotic shot brought her fever down within a few hours. She was terribly uncomfortable... I hear she's feeling better now. Monday evening we met another realtor.
- Tuesday Jesse and I went snowboarding.
- Wednesday morning Jesse woke up with a sore throat - I brought him pho home for dinner. We met another realtor.
- Last night I went to pilates and then caught up on my Grey's and Private Practice and Office while Jesse was at a "winter camping" session at REI. He found out that we need all new gear to camp in the winter (and we're not going to spend the money right now - which is honestly a bit of a relief to me). Winter camping sounds cold, but I was willing to try it. As long as I'm warm enough I'll be okay. Then poor guy coughed all night! I think he was worried about keeping me up, so he slept on the couch - and some of the time I know he didn't sleep because the tv was on. I wonder if he's working today or if he called in sick. I'm working, that's for sure - my inbox is starting to look like it used to: huge!

visiting friends

Last weekend Jason and Debbie came to visit us in Denver! We had a blast... going out to eat, touring the city... Saturday we drove up to Rocky Mountain National Park with Nick (our Denver friend). It was so good to have company! And now we don't.

I was checking-in everywhere we went on my Foursquare account - just trying to get used to it! Still am doing it... headed out in a few minutes to pick up pho. We had a great day snowboarding yesterday but today Jesse is not feeling great and SOUP just might be the answer. I love my new snowboard! But need new boots - mine are officially too small.

800lb gorillas

Of social media:

An interesting article about Facebook 'locking in' its Internet dominance – which was commented on with a link to a 2006 blog post about MySpace including, “MySpace won’t be beaten by a feature-rich competitor. It’s a marketplace, and marketplaces need critical mass.” Facebook has certainly hit critical mass – you can’t argue with the numbers: in December Facebook recorded nearly 112 million unique visitors in the United States, compared to 57 million for MySpace and 20 million for Twitter, according to Comscore. But if something better comes along (understanding that initially it can’t possibly be bigger, unless it’s Google), will you shift your allegiance? Has the site become such an essential part of your life that you’re technologically "locked-in"?

Of the chili cook-off:

The special chili always wins, doesn’t it? Last Wednesday there were many red (meat) chilis, three vegetarian chilis and two green chilis. I intended to bring a vegetarian chili – I made a big pot of chili and then Jesse and I had some for dinner. Then all of the sudden I no longer had a big pot of chili to transfer in to my brand new red 4QT crock pot… so I had to bulk it up with meat. I generally use spicy pork sausage but I was a little short on that so I added some chopped bacon to the mix. Yummy! Anyway, my favorite of the chilis at the cook-off was the green one that wasn’t too spicy. It had chicken in it and also (I think) tomatillos. It reminded me a bit of the green tomatillo salsa at JV’s taco shop in San Diego - which I HAVE to visit when I'm back next month. And the overall award went to… the green chili that I loved. Jesse wasn’t thrilled (mostly because he wanted me to win). He thinks that green chili (with chicken!) isn’t really chili. And I agree – it’s really more chicken tortilla soup sans tortilla. Merriam-Webster says chili is: 2 a : a thick sauce of meat and chilies. So I guess it IS chili… and I like it… but does that make the "special" chili an 800lb gorilla? I don't know, I was just trying to come up with a title would allow me to blog about social media AND chili.