See! I told you!!

You see Blog, I have proof ! The essays I’ve written for Health Central (that ones that have kept me so distracted) have been posted. So you can see first pixel that I’m on the up and up.  Here are the links for MSCentral. Right here. Just below this text. You see them?   No, I’m not being defensive! (Why is it always the other person who is defensive!) I sound like this because quite frankly, I feel funny that you thought I was in an illicit affair with another blog. There will never be another you, so please get that out of your default settings.

I know you’ll understand once you have context…

Your Next Neuro Appt: Making Sure You Remember Not to Forget

Everyone knows the first rule of preparedness when you are off to see your doctor. Bring a list. (If you didn’t know, go get a pen!) There are so many emotions that surround any doctor appointment; but when you are coping with a chronic, unpredictable, potentially progressive disease, (sheesh, just typing those words gives me the yucks!) the anxiety factor is huge. And anxiety does not partner well with clear thinking and remembering….. read more~

The Squeeky Wheel get’s a lot more than greased, it gets help.

Not everyone is like me. I’m a big-time communicator and very in touch with how I feel and what I need and I’m not afraid to ask for it. If I want a beautiful ceramic mug for my anniversary, I email a link to my husband. If I need a hug or to hear that I look nice, I tell the aforementioned person. This approach doesn’t work for everyone. Some want their needs to be understood (clairvoyance is very helpful here) and when they aren’t realized, there is disappointment. I’m all for putting it out on the table to increase the likelihood that I’ll get what I want (mug) or need (hug).read more~

 Hell-O Mommy… Pay Attention

When Madeline was born, I had been living with Multiple Sclerosis for 13 years, and on that very day I started planning what would be our first conversation about MS. Ok, maybe not that day. But worrying about that conversation was a big part of my “first time mommy-how am I ever going to do this baby thing” anxiety package. So I learned the basics, the one’s that all first time parents need to know and are forced to figure out! You know…  the holding, the changing, the nursing, the sling-ing, the bouncing, the soothing, the “sleeping” and that car seat that we couldn’t figure out-ing –These are the scenarios that humble us at a time when we thought we already knew how to do this “life” thing. With our new baby, we were reduced to preschoolers with their mittens clipped on their coat sleeves. And even though our learning curve kept us very distracted, I couldn’t ignore my fears of how this disease would impact my mom-abilities and how it would ultimately make Madeline feel. I needed to start prepping her for my unknown future as soon as possible! read more~

So blog, I hope this makes my case. I promise to keep you and all of our readers up to date on these writings. You will always be my first, blog, and I will never leave you in the internet dust. I promise~

Dear Blog: I’ll make it up to you~

I know, I know. You are shaking your proverbial head, clucking your proverbial tongue saying, I knew after that LJBF (let’s just be friends) letter that you would forget about me. But please, blog, let me explain.

You see, the writing at MS Health Central has really picked up and I’m finding the content of that site to be valuable; I’m honored to be a part of it. And get this- I’m doing a video project there as well. (of course I could be doing the same with you, just saying..)

Then there is Wego; an incredible site that “Empowers Health Activists.” (check out the link to see what that means! It’s the blue word “Wego.” But of course you know that!) There are some very exciting things happening on that site and I’ve been contributing in many ways.  I was recently on a panel talking to pharma on behalf of the MS community.  And…I’ve  been a part of video conversations with meaningful topics like “The Decision to Use an Assistive Device”– but those haven’t launched yet, so you wouldn’t know about it. (I’ll be sure to keep you “posted” if you are interested!) Oh, and most recently I’ve been looking for other people with MS who want to be in these video conversations. So blog, please spread the word.. I’m sure that there are a lot of people with MS who would love to participate… and you are still in my top 3 list of reaching out to peeps with MS. (PWMS)

I’ve also been very busy with MSLOL Radio– the monthly webcast that highlights people who have a significant role in the community. And there are so many! (I hope you noticed that I used your name for this show; so you should feel honored.) Because I want to “give the people what they want” I am taking suggestions for topics.

And then there is MS SoftServe. Of course I’ve been talking about this with you for ages now. But things are ramping up. We have applied for our first grant and have many more apps on deck. Getting this site up and running is imminent and it will not only be invaluable to the newly diagnosed, but also to the long term-ers who don’t want to know about every possible MS symptom that may never effect them. (MSSoftServe.org is the staging ground.) And there are some amazing features for individualizing the learning experience. Oh, I forgot to tell you… I have another blog dedicated to MSSoftServe. Perhaps you’ve run into each other at the water cooler. This has been so helpful in keeping everyone up to date on our progress.

Please don’t look at me that way. I promise I won’t go so long without a meaningful entry. Hey, here’s what I’ll do… I won’t just post links to my other writings – I’ll post information about the links. That way people will stop and read you for a bit- and it will keep you update on where I am. How does that sound?

I won’t say how important you are to me; I don’t want it to sound hollow. I’ll just prove my loyalty to you and not go months without talking to you. You’ll see. It will be great!

Thanks for being my BBF*.

Love, Amy

*best blog forever!

If You Can Dream: Learning to Thrive with Multiple Sclerosis

I recently met a documentary filmmaker named Emmett Williams. His friend Thy has been living with MS for two decades. They were having a conversation one day, about how few documentaries provide an in-depth look at what it’s like to live with MS. How can one  truly understand the MS experience with a few brief clips and short interviews. A film needs to show the intimate details of life with MS- from waking up to going to sleep and everything in between.

So, instead of lamenting that these film portraits of MS don’t exist, they are making one! How is that for proactive~

In Emmett’s words:

If You Can Dream: Learning to Thrive with Multiple Sclerosis” will document the lives of  three people with MS — all with different variations, all at different points in their life. We will learn about their daily battles and triumphs, the importance of their support network, and the dreams they have for themselves and others who have been diagnosed with Multiple Sclerosis.*”

Once made, this film will bring its viewers closer to understanding of what it really means to live with this disease. This deeper look at life with MS, will help people better understand the variable nature of Multiple Sclerosis. Speaking as a person who has been living with it for 23 years- I  love the idea of a larger community who “gets it!”

Check out the website and watch the work in progress. If it is meaningful to you, consider making a donation. No matter the size every little bit gets this film closer to the proverbial can.

~Amy

*If You Can Dream will donate 25% of everything contributed over $10,000 to MS charities and 50% from any earnings after the film is finished.