We’re working to restore service…
I know it’s been a long time since there has been new content and that the site has been largely unmaintained, with the exception of regular WordPress updates. The good news is the site will be getting some love shortly. Real life has been happening over the last three years and it caught up with us.
- Sara decided to return to school full time. School work has been incredibly time consuming and she has been cranking about ten blogs worth of essays and papers for the last three years. Her last day is Monday and then she graduates! Excitement all around.
- We moved to the San Francisco, CA / Silicon Valley area just over two years ago for work. Between selling our home, moving cross country, and getting settled in new jobs we have been incredibly busy.
- Sara is now seeing Neurologists at UCSF’s MS Research Center, one of the premier MS research facilities in the world. She has had a really incredible experience with the team there and is eager to share the details.
- Sara has also had a lot of excitement with Gilenya over the last few years and would like to provide some updates there. Since she was an early adoptee once it passed the FDA trials, a lot of people have followed her experience.
- Sara has had some interesting experiences trying to find a MS support group in the Bay Area and is hoping to have some better luck finding a new one soon.
- I killed the forums about a year and a half ago. Vanilla Forums open source solution wasn’t getting much love, there were a ton of gaps in the spam prevention so people were trying to use it to run a link farm to ride our SEO rankings, and every time I did a WordPress update it broke the forums. Our hope was that it would foster rich engagement among a community of like minded MS sufferers and their support networks, but it never got off of the ground. We may revisit it once the site is going again.
- The plugins, themes, and site in general have not had a lot of love over the last three years. Tonight I noticed the site had been down due to a broken plugin for at least a few weeks. I have noticed several other similar problems from time to time over the last three years. I am going to be spending some time over the next few weeks to do a lot of clean-up, work on implementing a new theme, revisiting the plugins (I noticed a few months ago that several had implemented ads / cross site promotional network stuff we had no intention of putting on the site…) and making the site look like something useful and modern for our visitors.
- A lot of people still use the site. We’re actually seeing more visitors now than when she was publishing the site regularly. MS is becoming a more well known and understood disease and there have been a huge number of treatment and research developments that we’d like to discuss.
Thanks for your patience and continued support. Preparations are underway to resume regular service.
by Sara on December 22, 2012
Ah, the holidays. When everyone is relaxed as sparklingly clean homes are aglow with candlelight reflected in bright smiles at gifts left by santa, toasting glasses, shiny giftwrap ribbons and bows…
Let’s be honest – in many ways the holidays suck.
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by Sara on December 8, 2012
Tysabri is a dream come true for many individuals with Multiple Sclerosis. Personally, I have opted to take Gilenya (for now), but Tysabri was very tempting when I considered my options after it became apparent that Rebif would not work out for me any longer. However, along with Tysabri’s side effects comes one very sinister danger: PML. One patient on Gilenya has been diagnosed with PML, and it can happen to anyone whether or not they have MS. Knowing that medication (especially newer medications) may bring a risk of PML has frightened us all.
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by Sara on December 1, 2012
“They” say that you are considered newly diagnosed for the first 2 1/2 to 3 years after your Multiple Sclerosis diagnosis. It seems like only yesterday that I posted my “Year One” article. It seems like only yesterday that I was diagnosed! Somehow, enough time has passed that I find myself at a point where I have been living with Multiple Sclerosis for four years.
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by Sara on November 17, 2012
For almost a week I have returned to the status of “college girl.” No, I have not been downing jello shots or going to keg parties. While I have known for most of my life that a college degree is necessary for most careers, until recently I did not have the opportunity to truly consider completing my degree. After my diagnosis I was certain that it would never happen – I could barely type, stay awake, or have coherent thoughts. Time has passed – I now find myself enrolled in college again. In hindsight I see signs that I already had Multiple Sclerosis in college, but certainly not as advanced as it now is. Pursuing education with MS is intimidating.
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by Sara on November 10, 2012
Cog Fog probably started sneaking up on you years before your MS diagnosis. Multiple Sclerosis alone is challenging, but Multiple Sclerosis with Brain Fog involves a totally different set of problems.
“Brain Fog” is a term generally used to describe the confusion, disorientation, general grogginess, and other issues resulting from cognitive dysfunction which commonly occurs with MS.
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by Sara on November 3, 2012
by Sara on October 27, 2012
This is the last in a series of posts based on my personal experience on how to simplify your life. If you have followed this blog for long, you’ll know that I have had Multiple Sclerosis for about 4 years and have been trying to play catchup and pull my life together since the diagnosis. While my husband and I are not really minimalists or zen gurus, we have found our lives improving one step at a time by simplifying as much as possible.
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by Sara on October 20, 2012
by Sara on October 13, 2012
Have you ever opened a closet only to be shocked by how many things had found their way in there? We accumulate things over time. Lots of things. Too many things. Don’t let stuff own you or define you – simplify your life and dump all the junk. When we moved into our house about 7 years ago we probably had twice as much (or more) overall stuff than we do now, and we still have too much. Before my Multiple Sclerosis diagnosis, our lives were very disordered. Parts of our house were unusable or difficult to navigate, and there was certainly no open space for yoga or other exercise.
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