- Amy's MS Blog - Amy
- The MS Mom - Amy
- The Sparkled Life - Eliz
- Ugly Like Me
Saturday, June 30, 2012
New MS Blogs
Thursday, June 28, 2012
Canes and Cobblestone in Zurich
I’ve often observed persons using canes in the States who walk very slowly or have the appearance of shuffling their feet. At times, it is seems that the cane is the only thing keeping a person upright. Do we tend to lean on our canes a bit more here in the US? I wonder.
In Switzerland, cane users walked no less quickly than others in the crowd. When I finally brought my folding cane out for use on our last day, I definitely walked more slower than the throngs of tourists and locals. People passed me by frequently. I even had to quickly step out of the way of a women spotted at the train station who was practically jogging while using her cane.
Observing so many people using mobility devices made me wonder if Americans are just more stoic and reluctant to use canes and arm crutches than the Swiss. But then I considered that since people are much more pedestrian in Zurich, perhaps they are more willing to do what it takes to be able to travel distances.
Maybe persons who grow up in a culture of Alpine hiking and skiing (sports which frequently involve the use of poles) are more likely to use a cane then those of us in the US who may mistakenly associate using a cane as a sign of weakness. Of course, using a mobility device is not a sign of weakness, but you do need to use the appropriate device for maximum benefit.
Read this post in its entirety:
Trains, Trams, and Walking Canes: Pedestrian Travel in Europe
In Switzerland, cane users walked no less quickly than others in the crowd. When I finally brought my folding cane out for use on our last day, I definitely walked more slower than the throngs of tourists and locals. People passed me by frequently. I even had to quickly step out of the way of a women spotted at the train station who was practically jogging while using her cane.
Observing so many people using mobility devices made me wonder if Americans are just more stoic and reluctant to use canes and arm crutches than the Swiss. But then I considered that since people are much more pedestrian in Zurich, perhaps they are more willing to do what it takes to be able to travel distances.
Maybe persons who grow up in a culture of Alpine hiking and skiing (sports which frequently involve the use of poles) are more likely to use a cane then those of us in the US who may mistakenly associate using a cane as a sign of weakness. Of course, using a mobility device is not a sign of weakness, but you do need to use the appropriate device for maximum benefit.
Read this post in its entirety:
Trains, Trams, and Walking Canes: Pedestrian Travel in Europe
Tuesday, June 26, 2012
The Power of the Headline
In case you missed it, here were my initial thoughts on reading the first 50 or so articles following the public announcement that Jack Osbourne has MS. After the edition of People Magazine finally hit the shelves, hoards of MSers were equally appalled at the headlines. Even Jack Osbourne said on his Facebook page, "Dear journalists...will you please stop sensationalizing my situation to
sell your poorly written magazines and papers. I AM NOT DYING!"
Read:
Jack Osbourne, Newly-Diagnosed with MS: Celebrity and Disease Awareness
Read:
Jack Osbourne, Newly-Diagnosed with MS: Celebrity and Disease Awareness
Sunday, June 24, 2012
Saturday, June 23, 2012
Meeting Over Coffee on a Hot Day in DC
 |
| Michael Gerber and Lisa Emrich, June 21, 2012 |
Consider Michael's philosophy:
Participate. Make a difference. Live a life that matters.
As Michael explains, "How do you live a life that matters? Seek to make a difference. How can you make a difference? Participate!"
What have you done to make a difference today?
Thursday, June 21, 2012
Carnival of MS Bloggers #117
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Disney World, Jack Osbourne, a Big of Luck,
and Doctors Beyond Reproach?
and Doctors Beyond Reproach?
Relenting and Renting
by Laura at Inside MyStory
by Laura at Inside MyStory
Never do I want to be constrained to a wheelchair. Yes, I know, neither do you. None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine. I took a trial run at it last week and came away with a renewed appreciation of being ambulatory. It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family. The thinking was being late in May, the weather would still be reasonable. So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.
Heat sensitivity is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs. Keep me in that type of stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait – step, lean, drag, shuffle. Repeat. The hotter I am, the scarier the MonSter in me looks.
We planned on five days in the assorted parks and thought we had developed a reasonable game plan. However we didn’t take into account the unusual early season crowds and did I happen to mention the heat? The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on. The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented. A mere $12 a day and anyone can rent a wheelchair for getting around the parks. There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.
Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb. My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing. The height of the chair handles appear to be made for people who are less than 70 inches in stature. My family is tall, and each one of them had to stoop slightly to push the handles.
I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own ass around in a wheelchair, and I learned that is no longer a joke; I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever. But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing. It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own. I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too, too, too whatever. This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.
People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty. In a large, sun baked crowd, it is even worse. I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid. If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck and especially the belt line?
It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park and she was not so excited with many of the rides we did manage to do. But we made the best of it – we had our laughs, danced a bit to the music, and made our own fun and I appreciated the alone time with her. even though we were surrounded by thousands of other people. Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences. Being in a chair, albeit voluntarily and for a few short days, gave me new perspective and renewed motivation to not relent to my MS.
Jack Osbourne Has MS
by the MS Blogosphere
Did you read the news or watch the TV interviews discussing the recent MS diagnosis of Jack Osbourne, son of Sharon and Ozzy Osbourne? More than 100 articles have been written and shared on websites since the public announcement was release the past Sunday evening. The MS blogosphere has also discussed the news. Here is a round-up of interesting posts:
- Jack Osbourne, Newly-Diagnosed with MS: Celebrity and Disease Awareness by Lisa Emrich at MultipleSclerosisCentral.com
- Celebrities with MS: We Need More of Them by Mitch at Enjoying the Ride
- Welcome to the Club, Jack Osbourne by Laura at Inside MyStory
- you've got more than money and sense, my friend by Swisslet
- M.S. is B.S. by cubanrick at mylifeonMarS
- MS in the News by Jodi at Jodi Bean's Blog
- Adjust Your Underwear by Thanks: Management
- Osbourne's MS Discovery by Simeon at Suddenly MS
- Just Wondering and Jack Osbourne by Life Can Be Simple
by Judy at Peace Be With You
A good attitude,
success may depend on it.
So is being real.
I am no fool, see.
I know crap can just happen,
good person or not.
One can only make
the best of what life offers
and hope luck shows up.
by Thomas of BiPolar, MS, and still as handsome as ever
OK, before I begin, take a look at this piece of information here. That's fine, I'll wait. HmmmmHmmmhmmmm. Oh, good. Now in the spirit of sharing, I'd like you to know that that guy is my psychiatrist. Or was. Or still might be. I'm not sure.
First, I freely admit that everyone is presumed innocent before proven guilty. However, I always did wonder why there was a very large amount of turnover in the office. Last few years have been tough for jobs, I am aware, so I did wonder why so many young ladies were in and out of the place, unless incompetence reigned. But basically I paid my co-pay, sat in the chair, filled out the forms, and met with either the Doctor, or one of his associates. Before the associates all disappeared.
Aside from possibly having a serial killer employed, and that's the reason they had to move to their new place because there were no spots left for the bodies to be buried, it did cause one to ponder. I see a lot of physicians because of my dual diagnosis (everyone needs a hobby) and it's more than likely that at each visit the same face would greet me and discharge me. Sometimes the face was attached to the same head. There was consistency.
But not at this psychiatrist's office.
Anyway, moving on, you may have noticed in the article that this particular doctor was called on the professional carpet for having "prescribed excessive levels of medication, failed to properly monitor patients and failed to maintain accurate records." These were the alleged charges.
(Read more: http://www.timesunion.com/local/article/Psychiatrist-faces-sex-counts-3628274.php)
Now, this Doctor and I have had no personal problems, as far as I can tell, in that we worked well on trying various medications to calm the bipolar, and adjust to the new challenges of brain lesions from MS. Working also with his associates, we had a good rapport, and the improvement could be visibly seen. And for those who might have looked, this is where the 5 Keys to Mental Health came from (and No. 5 is on its way). If something needed to be changed, it was changed immediately, or if something needed to be added, it was. And I have benefited and am grateful to the practice.
But still....should I go back there? Should I recommend the practice to others?
Everyone lives with their own delusions, even well trained doctors. Within each person is a golden nugget, a true clean soul that shines. It just gets covered with personal crap, and the jewel can not get its light through the mud and gunk of life. The person needs to clean that jewel themselves. And it takes time. This doctor may have some time soon.
Last night I started looking in my health insurance guidebook for another psychiatrist, one that was, literally, closer to home. I've been fortunate that I've had the same doctors pretty much for years, and haven't had to experience the constant shuffling many patients do. In fact, my regular physician retired the same day I did. But as far as I know, none of these folks had any of the issues that are being doled out to my psychiatrist.
So how to handle this? Consider what would you do if you found out a professional individual who helps you balance your disorder/illness/life has not exactly been a shining light to others? Forgive and continue? Forgive and move on? or just move on? I am fortunate that I can.
This concludes the 117th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on July 5, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 3, 2012.
Thank you.
Tuesday, June 19, 2012
New MS Blogs and Bloggers
- M.S. Where Atypical is Typical - Amanda
The directory of the MS blogging community can now be found on this page.
Monday, June 18, 2012
Photosensitivity and Methotrexate: Protect Your Skin
On our first full free day during our trip, Rob and I took the train into old town Zurich. During the short ride, I slathered sunscreen on my face, neck, and arms. It
was very important that I protect myself from the ultraviolet light. I
insisted that Rob use the sunscreen as well. Our skin was armed and
ready to go.
I don’t spend much time in the sun and typically get my vitamin D through daily supplements. Other than excessive squinting and heat sensitivity I experience due to MS, I tend to avoid sun exposure because of potential photosensitivity.
What is photosensitivity?
Photosensitivity, also called sun sensitivity, is an inflammation of the skin caused by a combination of certain chemicals and exposure to the sunlight. Some medications commonly taken for RA may contain light-activated chemicals. Photosensitivity is a common side-effect of methotrexate, plaquenil, and NSAIDs such as celebrex or advil, according to Epocrates Online. Photosensitivity may be a serious side-effect of anti-TNF drugs such as cimzia, enbrel, humira, remicade, and simponi, as well as sulfasalazine. It is not considered a side-effect of actemra, arava, kineret, orencia, or rituxan.
Read this post in its entirety:
Photosensitivity and RA: Protect Yourself From Skin Damage
I don’t spend much time in the sun and typically get my vitamin D through daily supplements. Other than excessive squinting and heat sensitivity I experience due to MS, I tend to avoid sun exposure because of potential photosensitivity.
What is photosensitivity?
Photosensitivity, also called sun sensitivity, is an inflammation of the skin caused by a combination of certain chemicals and exposure to the sunlight. Some medications commonly taken for RA may contain light-activated chemicals. Photosensitivity is a common side-effect of methotrexate, plaquenil, and NSAIDs such as celebrex or advil, according to Epocrates Online. Photosensitivity may be a serious side-effect of anti-TNF drugs such as cimzia, enbrel, humira, remicade, and simponi, as well as sulfasalazine. It is not considered a side-effect of actemra, arava, kineret, orencia, or rituxan.
Read this post in its entirety:
Photosensitivity and RA: Protect Yourself From Skin Damage
Sunday, June 17, 2012
Do infertility treatments have an effect on MS?
A recent study published online June 11 in the Journal of Neurology, Neurosurgery, and Psychiatry confirms the results of prior studies suggesting that infertility treatments have an impact on MS relapse rate. Hellwig K, et al (2009) found a statistically significant increase in relapse rate in 23 MS patients who underwent hormonal stimulation associated with assisted reproductive technology (ART), which includes in vitro fertilization (IVF).
For the current study, researchers obtained data related to MS patients and IVF procedures from 13 French university hospital databases or referring neurologists. From 1998 to 2008, 32 women with MS underwent a total of 70 IVF treatments. In 48 cases gonadotrophin releasing hormone (GnRH) agonists were used, GnRH antagonists used in 19 cases, and information is unknown for three treatment cycles.
Annualized relapse rate (ARR) was calculated for different times periods before and after IVF treatment. As shared by MedPageToday, 19 women in the study had a total of 26 relapses during the three months after the IVF treatment. Data analysis revealed that the ARR was significantly higher during the three-month period following IVF treatment (mean ARR 1.60) compared with the three months prior to IVF (mean ARR 0.80) and a three-month period one year before the procedure (mean ARR 0.68). This represents double the risk of relapse in the three months post-IVF as compared to the three months before IVF.
Read this post in its entirety:
Pregnancy, Infertility and Hormones: MS and Motherhood
For the current study, researchers obtained data related to MS patients and IVF procedures from 13 French university hospital databases or referring neurologists. From 1998 to 2008, 32 women with MS underwent a total of 70 IVF treatments. In 48 cases gonadotrophin releasing hormone (GnRH) agonists were used, GnRH antagonists used in 19 cases, and information is unknown for three treatment cycles.
Annualized relapse rate (ARR) was calculated for different times periods before and after IVF treatment. As shared by MedPageToday, 19 women in the study had a total of 26 relapses during the three months after the IVF treatment. Data analysis revealed that the ARR was significantly higher during the three-month period following IVF treatment (mean ARR 1.60) compared with the three months prior to IVF (mean ARR 0.80) and a three-month period one year before the procedure (mean ARR 0.68). This represents double the risk of relapse in the three months post-IVF as compared to the three months before IVF.
Read this post in its entirety:
Pregnancy, Infertility and Hormones: MS and Motherhood
Saturday, June 16, 2012
Our Trip to Switzerland
At the Löwendenkmal (Lion Monument) in Lucerne, Switzerland.
Sailing on Lake Lucerne with the Alps in the distance.
Swans on Lake Lucerne and the Bahnhof.
From the boat on Lake Lucerne, Switzerland.
The famous Spriingli chocolate shop on ParadePlatz in Zürich, Switzerland.
White Rabbit and Top Hat at the Dolder Grand Hotel in Zürich.
Sculpture of Grossmünster Protestant church in Zürich.
Random bride and groom being photographed on Rathausbrücke in Zürich.
Friday, June 15, 2012
Alternate Realities
Good grief, there was almost a disaster this morning. Today I am attending the PharmedOut 2012 conference at Georgetown University. Since I live maybe 10 miles from campus, I was fortunate enough to get a ride. But leaving Falls Church, my driver's car and a bike rider almost collided.
If there hadn't been two people in the car (four eyes), our morning would have been much different. My car was second in line at an intersection to turn right. The vehicle ahead was going straight. Our turn signal was most definitely on. The bike guy was driving on the sidewalk. Our car was already making the turn when I screamed. And when I scream, I mean I hollered very loudly. I can do that when necessary.
The bike guy was coming up very quickly, much too quickly to be driving on the sidewalk. He didn't slow down. He didn't even flinch. He would have been seriously injured if our breaks (and driver) weren't quick and responsive. Crashing a guy under the front bumper would definitely have changed the course of the day.
Fortunately that didn't happen. I made it to campus in good time and we're waiting for the conference to begin. I wonder if the guy on the bike is contemplating his alternate scenario this morning.
If there hadn't been two people in the car (four eyes), our morning would have been much different. My car was second in line at an intersection to turn right. The vehicle ahead was going straight. Our turn signal was most definitely on. The bike guy was driving on the sidewalk. Our car was already making the turn when I screamed. And when I scream, I mean I hollered very loudly. I can do that when necessary.
The bike guy was coming up very quickly, much too quickly to be driving on the sidewalk. He didn't slow down. He didn't even flinch. He would have been seriously injured if our breaks (and driver) weren't quick and responsive. Crashing a guy under the front bumper would definitely have changed the course of the day.
Fortunately that didn't happen. I made it to campus in good time and we're waiting for the conference to begin. I wonder if the guy on the bike is contemplating his alternate scenario this morning.
Sunday, June 10, 2012
Emails Going Unanswered
Do you ever feel inadequate? I do.
Do you keep quiet when you discover that you've goofed up, hoping that nobody noticed? Sometimes.
Do you fall short of your own expectations? I do, sometimes, but perhaps I just need to readjust my expectations.
About every month or so, I will search my inbox for the emails related to comments I've left on other people's blogs or comments which others have left on my blog. I will label each one with the name of the blog and "archive" it. I will conduct a search for messages related to different listservs I am a part of, label them, then archive them as well.
Then I will search in my email to bring up old messages which can easily be deleted.....NY Times, Washington Post, junk messages from department stores, those types of things. Also, I try to weed out the relevant PR messages from the junk. Requests for links - junk. Requests to guest post - mostly spam junk. Requests to post "news" related to MS drug study results - not junk, but never has one of those offers of an interview with a researcher or neurologist panned out. So why should I bother. Send me a pdf of the study and then we can talk.
I also try to make sure that I've acted upon email messages in which bloggers have asked me to feature a post in a Carnival or to add their blog to the community listings. I try to "star" these messages when I first see them so that I can act upon them later. So often, I'm in a rush, and my words aren't flowing smoothly in my head, that I don't answer these messages directly until a later time.
Unfortunately, it is not uncommon for me to have more than 100 unopened and unread emails at any given time. It is not uncommon to have more than 3000 email messages still officially in my "inbox." For that matter, too often I have 20-30 tabs open on my browser as well.
So many balls up in the air. No wonder some get dropped.
During the past three days or so, I've spent countless hours cleaning up my email inbox. First I searched for messages which could easily be deleted. Then I searched for things which could be labeled and archived for future reference.
I moved on to working through my "starred" messages. Oh boy, here is where things got messy. I had hundreds of starred messages, but only the 50 most recent ones would show up on my page. The challenge was on - unstarring, reading, deleting, archiving, searching. Rinse and repeat.
What I found were messages I received up to two years ago which I had never answered. Messages I had not acted upon (ie. adding a blog to the community listing). Messages I had marked as important and which I had every intention of responding to. Some of those bloggers asked for help and now I can see that they abandoned their blogs not long after reaching out.
I feel horrible. I am ashamed. I let people down.
Sometimes I get emails from friends who ask how I do everything I do. How do I manage to be "everywhere" on the internet. "How do you balance it all?"
The answer - I don't know how. It seems to be part illusion and it takes an enormous amount of time and energy. I end up spinning in circles putting out fires (ie. acting upon obligations and requests).
I want to have the energy and frame of mind to give someone my full attention when I do sit down to answer an email. This is how messages go unanswered for various lengths of time. Too often, I am apologizing for my "delayed response" when I do get back to people. Then there are the times where I do include a post in a Carnival or list a blog, but don't send an email back. What must those individuals think of me?
How do I manage it all? I have no freakin' idea.
I love it when others send me messages thanking me for what I do for the community. It makes me feel enormously good (and significant). I love getting comments on my blog, but I often don't respond for many of the reasons mentioned above. It doesn't mean that I'm ignoring you, maybe it does, but I don't mean it that way.
Life online moves so very quickly. So much I want to be able to do, and so little time and energy to do it.
Although I know that those individuals who reached out to me last month, last year, or in the last five years of this blog, and who didn't get a response will not likely see this post, I still feel that an apology is in order.
I'm sorry. I am just one person. No support staff pointing me in the direction of good news stories (doing all the weeding out for me). No other person fielding my email messages. No one here but me.
I know that I am adequate. I know that I make a difference in other people's lives. I know that there are many who have read my words, and although they haven't reached out to me personally, they have been touched in a positive way.
So let's flip this around. How do YOU manage to do everything you do? Please share, I could use some pointers.
(P.S. I now have 525 messages remaining in my inbox with only 18 unread. I think that next I'll sit down and answer Harry (newly dx) who emailed me last week asking for help.)
Do you keep quiet when you discover that you've goofed up, hoping that nobody noticed? Sometimes.
Do you fall short of your own expectations? I do, sometimes, but perhaps I just need to readjust my expectations.
About every month or so, I will search my inbox for the emails related to comments I've left on other people's blogs or comments which others have left on my blog. I will label each one with the name of the blog and "archive" it. I will conduct a search for messages related to different listservs I am a part of, label them, then archive them as well.
Then I will search in my email to bring up old messages which can easily be deleted.....NY Times, Washington Post, junk messages from department stores, those types of things. Also, I try to weed out the relevant PR messages from the junk. Requests for links - junk. Requests to guest post - mostly spam junk. Requests to post "news" related to MS drug study results - not junk, but never has one of those offers of an interview with a researcher or neurologist panned out. So why should I bother. Send me a pdf of the study and then we can talk.
I also try to make sure that I've acted upon email messages in which bloggers have asked me to feature a post in a Carnival or to add their blog to the community listings. I try to "star" these messages when I first see them so that I can act upon them later. So often, I'm in a rush, and my words aren't flowing smoothly in my head, that I don't answer these messages directly until a later time.
Unfortunately, it is not uncommon for me to have more than 100 unopened and unread emails at any given time. It is not uncommon to have more than 3000 email messages still officially in my "inbox." For that matter, too often I have 20-30 tabs open on my browser as well.
So many balls up in the air. No wonder some get dropped.
During the past three days or so, I've spent countless hours cleaning up my email inbox. First I searched for messages which could easily be deleted. Then I searched for things which could be labeled and archived for future reference.
I moved on to working through my "starred" messages. Oh boy, here is where things got messy. I had hundreds of starred messages, but only the 50 most recent ones would show up on my page. The challenge was on - unstarring, reading, deleting, archiving, searching. Rinse and repeat.
What I found were messages I received up to two years ago which I had never answered. Messages I had not acted upon (ie. adding a blog to the community listing). Messages I had marked as important and which I had every intention of responding to. Some of those bloggers asked for help and now I can see that they abandoned their blogs not long after reaching out.
I feel horrible. I am ashamed. I let people down.
Sometimes I get emails from friends who ask how I do everything I do. How do I manage to be "everywhere" on the internet. "How do you balance it all?"
The answer - I don't know how. It seems to be part illusion and it takes an enormous amount of time and energy. I end up spinning in circles putting out fires (ie. acting upon obligations and requests).
I want to have the energy and frame of mind to give someone my full attention when I do sit down to answer an email. This is how messages go unanswered for various lengths of time. Too often, I am apologizing for my "delayed response" when I do get back to people. Then there are the times where I do include a post in a Carnival or list a blog, but don't send an email back. What must those individuals think of me?
How do I manage it all? I have no freakin' idea.
I love it when others send me messages thanking me for what I do for the community. It makes me feel enormously good (and significant). I love getting comments on my blog, but I often don't respond for many of the reasons mentioned above. It doesn't mean that I'm ignoring you, maybe it does, but I don't mean it that way.
Life online moves so very quickly. So much I want to be able to do, and so little time and energy to do it.
Although I know that those individuals who reached out to me last month, last year, or in the last five years of this blog, and who didn't get a response will not likely see this post, I still feel that an apology is in order.
I'm sorry. I am just one person. No support staff pointing me in the direction of good news stories (doing all the weeding out for me). No other person fielding my email messages. No one here but me.
I know that I am adequate. I know that I make a difference in other people's lives. I know that there are many who have read my words, and although they haven't reached out to me personally, they have been touched in a positive way.
So let's flip this around. How do YOU manage to do everything you do? Please share, I could use some pointers.
(P.S. I now have 525 messages remaining in my inbox with only 18 unread. I think that next I'll sit down and answer Harry (newly dx) who emailed me last week asking for help.)
Thursday, June 7, 2012
Carnival of MS Bloggers #116
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Optimism, Breathing in Sync, and Steroids
from Lisa Emrich of Brass and Ivory
Did you hear of the Everyday Matters program co-sponsored by the National MS Society and Sanofi-Genzyme (developers of Teriflunomide and Alemtuzumab)? If not, please read this post in its entirety at HealthCentral.
Five individuals living with MS will be chosen to work with the Everyday Matters team to map out strategies for achieving a desired goal or addressing a specific challenge in their everyday life through positive psychology. The lucky five with work with Shawn Achor, renowned psychology expert and former Harvard University lecturer, Kristen Adams, a mom and Emmy‐award winning producer living with MS, and Michelle Clos, a life coach certified by the International Coach Federation who is also living with MS.
I had the pleasure of speaking with Kristen Adams earlier this week about the program, about positive thinking, and about living with MS. As a professional producer, Kristen’s expertise is in video and telling stories. She will be conducting the initial interviews of the five participants living with MS to introduce them to the MS community online. She will keep in touch with them over the course of the program and visit them near the end to document how each has achieved a desired goal or worked through a particular challenge.
After attending a weekend workshop with Shawn, Kristen, and Michelle in Denver, Colorado from July 13-15, 2012, the five participants will receive six months of personal coaching from Michelle. The participants will also be keeping a video diary throughout the program to share their experience. In November, the entire group will be brought together again.
Kristen shares that the most important part of the project is for people in the MS community to VOTE on the topics. What issues are most important to you? What challenges would you like to see tackled through the program? The five participants will be chosen, in part, by how their own challenge or goal represent the interests of the MS community.
During our interview, Kristen was very excited as she described how several of the ideas Shawn teaches are reminiscent of homespun wisdom - “If you don’t like your situation, change your attitude.” You have the power to shape your circumstances. “My circumstances necessarily aren’t changing but my attitude about my circumstances can,” says Kristen. “I have the power to change my attitude about my situation.” Changing your outlook can help you feel differently about unchanging circumstances.
Shawn and the “Tetris Effect.”
Although Kristen admits to not playing Tetris as a youngster, she shared one of Shawn’s analogies with me. I really liked it so I’m sharing it with you.
The game Tetris teaches you to scan for patterns. The better you get at seeing the patterns, the better you get at playing the game. Kristen shares that it has been discovered that “people who played a lot of Tetris, even when they walked away from the game, would start to see those patterns in life all around them. So [Shawn] says, you can teach your brain how to scan for the positive in life.”
Here’s a really simple exercise to try. At the same time each day, think about three positive things that happened that day. Kristen does this with her sons at the dinner table. This “trains your brain to scan your environment for positive things,” Kristen says. This is one way to rewire your brain for optimism.
If you are interested in participating in the Everyday Matters program, sponsored by Genzyme and the National MS Society, go to everydayMSmatters.org to learn more. HURRY! The deadline is next Wednesday, June 13, 2012.
by stephen of one life: livin' the dream
i took a tai chi class many years ago, in which the teacher admonished us to remember to keep breathing, or, to be more exact, to remember not to stop breathing. when i was in high school, during my very brief stint in track, i figured out that the best way to pace myself was to coordinate my in-and-out breaths to my foot falls. i found i was able to run further if i could maintain this rhythm. years later, when i used to walk a few miles during my lunch break every day, i used the same technique, matching my breathing to my foot steps. it was a meditative process, even overlaying a mantra over my breathing.
i have in recent years had to give up both running and walking, but i have long been an on again, off again meditator, and the same mantra rhythm has stayed with me. i spent some time with a physical therapist who reminded me not to hold my breath when working with hand weights or doing other strenuous exercises. seems like pretty common sense advice, but i was, as probably many of us do, holding my breath as i strained. so much easier when the proper breathing is maintained.
oddly enough, i just recently discovered that, as i dragged myself down the hall with my walker, i was, again, holding my breath, and, how much easier it was when i timed my “steps” with my breathing. also made me feel less likely to fall. amazing how the simplest things can make such a huge difference.
by Annette of How Did That Happen?
So after spending almost 3 weeks on solumedrol to fix my optic
neuritis, I started a 3 month round because my leg went on strike - for
3 months.
Different people have different things to say about their steroid
experience and I would love it if I could report a 3 month stint of
boundless energy - happily scrubbing the kitchen floor while whipping up
some creme brulee at 3 in the morning. Sadly, I have never fallen into
that bucket. A list may be a more efficient vessel for my steroidal
experience.
- Metal Mouth - as soon as the IV steroids make their way into my impossibly small veins, my mouth fills with the taste of metal. It feels like I’m sucking on used tractor parts. The only cure - peppermint altoids and Coke - together. Well there is another cure - eating anything with a taste stronger than that of a tractor. I went with the peppermint altoids and Coke during the infusions, but when I left, I stopped at every drive-thru between the doctor’s office and my house. I bought and ate everything that wasn’t tied down or secured really well. There were times I could have happily chewed off my own arm if there was no fried chicken or Lays potato chips within my reach. (I’m a vegetarian, btw.)
- Weight gain - obviously due to the fried chicken, chips and pounds of key lime cheesecake I ate daily during those months, I gained 60 pounds. This was the toughest part for me. I had always been around 100 lbs and the 10 baby pounds I had gained were driving me crazy. After the 3 months were up I tipped the scales at 170. The fact that Rochester didn’t have an Olympic heavy-weight wrestling team was inconsequential. I was headed for the big time. Don’t get me wrong - 170 is perfect for some people - I get that. My ridiculous standards are meant only for me. The doctor’s advice?.. Steroid weight can be a bear to come off. Super - thanks for that. So I spent the next 6 months eating gummy bears, crying to the Cosmos.. HDTH??? (Could it be that the answers to my HDTH questions are smacking me square in the face, but my delusional God complex, ‘perfect every day in every way’, and ‘off the charts D-personality’ are all plotting to conceal the answers that probably would have accelerated this drawn out process significantly? Another redundant question. Of course not.)
- Potty Mouth - This was really something. I’m proud to be a Canadian with unflinching standards in the Emily Post manners department. I understand that can be as annoying as dropping f-bombs to some people, but again - only my standards matter in this world - am I right? (That was a redundant question. Please do not answer it. Thank you.) The vile eruptions that poured out of my mouth while on steroids would shock a back-woods hooker on crack. And no one was spared. Michael got the brunt of it, but anyone that mistakenly wandered across my path got blasted. My mother-in-law finally lost it one day and said, “Watch your God-damned mouth - you sound like a trucker”. I’m surprised she survived my ensuing wrath. I remember a drive-thru experience one day when I checked my order while still at the window. There were only 3 10-packs of chicken nuggets. I had ordered 4. I began swearing at the skinny, acne faced boy behind the window, but he ran away. The GAUL! I actually parked the car and walked into Wendy’s so I could berate more people more effectively. This was, of course, after I ate the 30 chicken nuggets. The manager ended up giving me 3 free 10-packs as long as I left the building immediately. Score.
This concludes the 116th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on June 21, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 19, 2012.
Thank you.
Monday, June 4, 2012
Welcome MS Blogs
- A Glimpse Into My World - Kelly
- Hello, Beautiful! - KaelaSue
- MSed Up! - Anna
- My life with one husband, three kids,.... - Floydmol
- My World of MS - Beverly
- Shades of Me - Amber
The directory of the MS blogging community can now be found on this page.
Saturday, June 2, 2012
Positive Psychology, Multiple Sclerosis, and Everyday Matters
“The study of positive psychology [is] a growing interest in using science to understand more about human strength and resilience regardless of specific circumstances.” - Everyday Matters information sheetNo matter what your challenges may be, the ability to be resilient carries you forward in life. The power of positive thinking - a phrase made popular by the Norman Vincent Peale publication of the same name in 1996 - is a philosophy which focuses on positive growth and the achievement of one’s highest potential. The scientific study of positive psychology has blossomed since the 1985 publication of the groundbreaking work of Michael F Scheier and Charles S. Carver in the seminal study, "Optimism, Coping, and Health: Assessment and Implications of Generalized Outcome Expectancies" in Health Psychology.
The National MS Society has teamed up with Sanofi-Genzyme (developers of Teriflunomide and Alemtuzumab) to present Everyday Matters (everydayMSmatters.org), a program which aims to engage and inspire the MS community. This new program will teach positive psychology by teaming renowned psychology expert and former Harvard University lecturer Shawn Achor with Kristen Adams, a mom and Emmy‐award winning producer living with MS, and Michelle Clos, a life coach certified by the International Coach Federation who is also living with MS.
Throughout the course of the Everyday Matters program, Shawn, Kristen and Michelle will work hand‐in‐hand with five individuals affected by MS from across the country as they map out strategies for achieving a specific goal or addressing a specific challenge in their everyday life.
How do you become one of the lucky FIVE to work with Shawn, Kristen and Michelle?
Beginning now through June 13, 2012, interested individuals can visit everydayMSmatters.org to submit their stories for consideration by the Everyday Matters team, or vote on the challenge, topic or goal that is most important to them.
Participants are asked to share a particular “everyday” challenge they would like to overcome or a goal they want to achieve. Stories can be shared through video or text and photos. All story submissions will be eligible for consideration for a personal coaching opportunity with the Everyday Matters team.
Five participants, each representing a different challenge or goal, will be selected to attend a weekend workshop with the team in Denver, Colorado from July 13 – 15, 2012, and will receive six months of personal coaching from Michelle. Each participant’s journey will come to life through a video series produced by Kristen and showcased on the website.
The most important criteria for participant selection will be the interest shown by people in the MS community, who are invited to go to the site and vote on the topics, issues and challenges that are most important to them in their own lives. As the title implies, this program is about facing the “everyday matters” of life with MS and sharing what you have learned with the entire MS community.
I will be talking with Kristen next week regarding the everydayMSmatters.org program. if you have any specific questions you’d like me to ask, please leave them in the comment section below.
But don’t wait!! Submit your stories, videos, or photos for consideration as the deadline quickly approaches. Then as part of the MS community, be sure to vote on the topics which interest you the most.
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