So, I'm taking a little break from this MS blog to work on a new blog for a digital media class. Check out my awesome design work and vast knowledge about coffee at www.cafedenver.wordpress.com.
See you there!
Tuesday, October 6, 2009
Monday, August 10, 2009
Sen. Rockefeller saving us money!
Disease-modifying drugs can cost upwards of $30,000 a year out-of-pocket for people with multiple sclerosis. But Senator John D. Rockefeller IV (WV) is trying to help out.
On Aug. 7th, he introduced the Affordable Access to Prescription Medications Act of 2009. It seeks to cap monthly out-of-pocket expenses for prescription drugs at $200 per medication or $500 total for people on more than one therapy.
Amazing!
On Aug. 7th, he introduced the Affordable Access to Prescription Medications Act of 2009. It seeks to cap monthly out-of-pocket expenses for prescription drugs at $200 per medication or $500 total for people on more than one therapy.
Amazing!
Tuesday, August 4, 2009
Running. Is. Hard.
For the past week I have done my best to begin practicing meditation, but I have to admit i
t has come harder than I imagined. In a comment, awb said that he and his wife just finished an aromatherapy regiment. Perhaps I could start there? I'm not giving up on meditation, simply attacking it from a different angle.
Last weekend I ran a 5K for the first time in my life. It was the longest I have ever run by more than a mile. It was great to feel accomplished at the end, but it took me nearly the rest of the week to walk normally again! This brings me to my second new goal in combating MS: get in better shape.
This weekend I began my slow build-up to being more fit. I played volleyball with friends at Wash Park and went for my second round of golf with my boyfriend. It was incredible, and much more manageable than I had imagined!
We all know that heat slows us down. But after I completed the 5K, I realized that heat doesn't have to completely stop me! A strange revelation, I know, but an important one for myself. Today I am beginning to train for Bike MS with a short workout on an indoor bike. Not much, I know, but I will be ready for next June. I will ride 150 miles.
Day 2: Train for Bike MS at least three times a week.
t has come harder than I imagined. In a comment, awb said that he and his wife just finished an aromatherapy regiment. Perhaps I could start there? I'm not giving up on meditation, simply attacking it from a different angle.Last weekend I ran a 5K for the first time in my life. It was the longest I have ever run by more than a mile. It was great to feel accomplished at the end, but it took me nearly the rest of the week to walk normally again! This brings me to my second new goal in combating MS: get in better shape.
This weekend I began my slow build-up to being more fit. I played volleyball with friends at Wash Park and went for my second round of golf with my boyfriend. It was incredible, and much more manageable than I had imagined!
We all know that heat slows us down. But after I completed the 5K, I realized that heat doesn't have to completely stop me! A strange revelation, I know, but an important one for myself. Today I am beginning to train for Bike MS with a short workout on an indoor bike. Not much, I know, but I will be ready for next June. I will ride 150 miles.
Day 2: Train for Bike MS at least three times a week.
Monday, July 27, 2009
Needles out, meditation in?
In through your nose, out through your mouth. Think about breathing. Count the seconds inhaled.
Today's Denver Post seems to be full of meditative advice to help get us through the day and be just a little healthier. Most of the health section was devoted to how and why breathing can affect the whole body.
But I was a little surprised to see a full article in the Sunday Post about a man with MS who uses meditation instead of medication.
Leonard Barrett is an actor with Physically Handicapped Actors and Musical Artists League who - like the rest of us - "looks so normal." From what I read it sounds like he is a great actor who has struggled through the years with exacerbations and dealing with audience members who don't understand why he's a member of PHAMALy.
Today's Denver Post seems to be full of meditative advice to help get us through the day and be just a little healthier. Most of the health section was devoted to how and why breathing can affect the whole body.
But I was a little surprised to see a full article in the Sunday Post about a man with MS who uses meditation instead of medication.
Leonard Barrett is an actor with Physically Handicapped Actors and Musical Artists League who - like the rest of us - "looks so normal." From what I read it sounds like he is a great actor who has struggled through the years with exacerbations and dealing with audience members who don't understand why he's a member of PHAMALy.
What I don't understand is why he has chosen meditation over medication. I am a firm believer in the mind-body connection, and feel it is my duty to MS to continue my therapy, exercise daily, and practice as much breathing and yoga as I can handle. But how can a person choose just one?
I know it's different for all of us. I'm doing the best I can and Leonard is doing the best he can. In the article he said the best way for him to meditate is to count 32 counts per inhale and 32 counts per exhale, for three hours per day. I don't know if I'll ever be able to dedicate that amount of time, but it's worth a shot.
My new goal: Try the tactics that seem to be working for others with MS. Who knows the Best Practices better than those with MS?
Day 1: Meditate for at least one-half-hour each day.
Wednesday, July 1, 2009
The Technology of Cooling Vests
Cooling down at a cost: how cooling vests saved my life and ruined my undershirt.
This past weekend I volunteered for Bike MS and was amazed at how many cooling options they offered for people with MS. From an RV with air conditioning decorated like a snowy winter wonderland to cooling vests, and everything in between, they really acknowledged how hard it was for bikers and volunteers with MS to be out in the heat.
But I'm left wondering, isn't there a better way to cool down? The cooling vest that I used was a blue vest soaked in ice water. It felt amazing and immediately helped my symptoms, but literally left me sitting in a wet t-shirt. Worse, the blue of the vest and blue volunteer t-shirt left my undershirt permanently stained blue. Sure, a blue-ish shirt isn't the end of the world, but it was an expensive price to pay just to cool down.
There are other types of cooling vests available that, instead of being soaked in ice water, come with pouches to place ice packs in. I tried a neck-wrap that used ice-packs, but after the ice packs had long melted the thick, black material became more of a heating pad. And it was a long, hot walk from my volunteer post back to the supply of ice packs.
Isn't there a better way? I remember at my undergraduate university I met a girl who was making a cooling bra with tubes of water that circulated to keep the bra cool for the woman wearing it. Why is she not making millions of dollars selling this to people with MS?
While I hope there are better options out there, I am excited to say that the current technology is available for free to people with MS who make a certain income or less. If anyone reading this needs cooling gear visit http://www.msassociation.org/. I hope to be blogging again soon about better options, but for now this is the best we've got.
Stay cool and out of the heat!
This past weekend I volunteered for Bike MS and was amazed at how many cooling options they offered for people with MS. From an RV with air conditioning decorated like a snowy winter wonderland to cooling vests, and everything in between, they really acknowledged how hard it was for bikers and volunteers with MS to be out in the heat.
But I'm left wondering, isn't there a better way to cool down? The cooling vest that I used was a blue vest soaked in ice water. It felt amazing and immediately helped my symptoms, but literally left me sitting in a wet t-shirt. Worse, the blue of the vest and blue volunteer t-shirt left my undershirt permanently stained blue. Sure, a blue-ish shirt isn't the end of the world, but it was an expensive price to pay just to cool down.
There are other types of cooling vests available that, instead of being soaked in ice water, come with pouches to place ice packs in. I tried a neck-wrap that used ice-packs, but after the ice packs had long melted the thick, black material became more of a heating pad. And it was a long, hot walk from my volunteer post back to the supply of ice packs.
Isn't there a better way? I remember at my undergraduate university I met a girl who was making a cooling bra with tubes of water that circulated to keep the bra cool for the woman wearing it. Why is she not making millions of dollars selling this to people with MS?
While I hope there are better options out there, I am excited to say that the current technology is available for free to people with MS who make a certain income or less. If anyone reading this needs cooling gear visit http://www.msassociation.org/. I hope to be blogging again soon about better options, but for now this is the best we've got.
Stay cool and out of the heat!
Wednesday, June 24, 2009
Hot heat, and cold chai
It's too hot!
I know everyone with MS understands what I mean when I say it's too hot. We had a video shoot today, and the added stress of carrying the equipment through the 80ยบ heat was almost too much.
But I must say the video is coming along very well.
We're working on a volunteer video project for the National MS Society, dedicated to recruiting more volunteers and appreciating all of the hard workers out there.
This weekend is Colorado's Bike MS - just a few days away! I'm a little indimidated to be a Crew Coordinator for the first time, but it should be a great weekend. I'm in charge of Team Village and can't wait to see all of the decorations/events teams are planning for their tents. It's going to be wild.
And maybe a little too hot.
I know everyone with MS understands what I mean when I say it's too hot. We had a video shoot today, and the added stress of carrying the equipment through the 80ยบ heat was almost too much.
But I must say the video is coming along very well.
We're working on a volunteer video project for the National MS Society, dedicated to recruiting more volunteers and appreciating all of the hard workers out there.
This weekend is Colorado's Bike MS - just a few days away! I'm a little indimidated to be a Crew Coordinator for the first time, but it should be a great weekend. I'm in charge of Team Village and can't wait to see all of the decorations/events teams are planning for their tents. It's going to be wild.
And maybe a little too hot.
Monday, June 22, 2009
Our Space: Living with MS under age 30
Living with MS can be hard, but having friends with MS can help bridge the gap between feeling alone and realizing that we're all in this together.
Here's an article the MS Society published about me in the "Our Space" section of Momentum Magazine - it's just my story, how I got where I am, and a little history about me.
Disability 101: Changed and on my way to D.C. | SummitDaily.com
Here's a great article about a man with MS and what he's doing to improve his self confidence with MS, while trying to educate others about the capabilities of people with disabilities.
http://www.summitdaily.com/article/20090621/NEWS/906219985/1078&ParentProfile=1055
Posted using ShareThis
http://www.summitdaily.com/article/20090621/NEWS/906219985/1078&ParentProfile=1055
Posted using ShareThis
Wednesday, June 17, 2009
MS Support Groups 2.0
Last year I interviewed a woman who created a support group on SecondLife for people with MS to talk and support one another for the National MS Society (read the article here). I've joined countless groups on Facebook and Spark People to network with other people who are like me.
But I still don't feel any closer to understanding how we all cope with the disease.
In a world of Web 2.0 and instant access to information, why don't we have instant access to people? I know, it's the same old story. But I envision a better way.
I want to meet young professionals with MS! I want to meet people who, like me, cope with the illness in extraordinary ways and don't suffer many symptoms because of the advances in technology.
I learned yesterday that Colorado has the highest incidences of MS in the U.S. I just moved here in August, so I certainly don't blame the state for my condition, but it is curious that there aren't more support groups to go around.
Across the nation there are many groups just like this, but it feels like Denver is missing the mark. I plan to start my own support group with the help of the National MS Society - I just hope there's a market for it!
But I still don't feel any closer to understanding how we all cope with the disease.
In a world of Web 2.0 and instant access to information, why don't we have instant access to people? I know, it's the same old story. But I envision a better way.
I want to meet young professionals with MS! I want to meet people who, like me, cope with the illness in extraordinary ways and don't suffer many symptoms because of the advances in technology.
I learned yesterday that Colorado has the highest incidences of MS in the U.S. I just moved here in August, so I certainly don't blame the state for my condition, but it is curious that there aren't more support groups to go around.
Across the nation there are many groups just like this, but it feels like Denver is missing the mark. I plan to start my own support group with the help of the National MS Society - I just hope there's a market for it!
Tuesday, May 12, 2009
Wii - helping my MS, or an excuse to spend money? I'm okay with either way.
So, I read and read that Wii can help people with multiple sclerosis. Well, as a 23-year-old with a deep love for MarioKart I have to say that justifying spending hundreds of dollars is very appealing.
Wii, Nintendo's newest video console, is so much more interactive than any other game system that it is said that playing will help with mobility and in combating fatigue. But, can't I also increase mobility with my morning yoga routine?
I want there to be more research on this. I want there to be proof that I need a Wii for my MS. I want to feel justified in this giant purchase. Yes, I just bought MarioKart64 again and an extra controller to feed my need for Nintendo, and yes I already own a GameCube. Should I buy a Wii and just feel good about it whether it's for "health reasons" or just because I think it sounds awesome?
Can I have my cake and eat it, too?
Wii, Nintendo's newest video console, is so much more interactive than any other game system that it is said that playing will help with mobility and in combating fatigue. But, can't I also increase mobility with my morning yoga routine?
I want there to be more research on this. I want there to be proof that I need a Wii for my MS. I want to feel justified in this giant purchase. Yes, I just bought MarioKart64 again and an extra controller to feed my need for Nintendo, and yes I already own a GameCube. Should I buy a Wii and just feel good about it whether it's for "health reasons" or just because I think it sounds awesome?
Can I have my cake and eat it, too?
Subscribe to:
Posts (Atom)
