About Kristin Bennett

Diagnosed with MS at 20 years old, while in college at Parsons School of Design, in 2001. It was two years after being diagnosed with a stroke and about a month after a surgery done to prevent another stroke. Kristin graduated in 2004 and became a mother in 2005, left NYC for Seattle in 2006 and created MomsWithMS.org in 2009 after a relapse that followed her second pregnancy and also marked the time when Kristin started the journey with a Naturopath to manage her MS with food and supplements. She is passionate (and blogs) about healthy diet and lifestyle for her whole family which consists of her husband, three children, and lots of pets. Freelance web consultant who loves to paint as much as she likes to tweet.

Sometimes I Feel Like a “Normal” Mom (Impostor Syndrome?)

What is normal?I was diagnosed with Multiple Sclerosis almost 15 years ago. I don’t usually show any symptoms, very rarely any that someone would notice. Usually they are subtle and/or invisible enough that there isn’t attention drawn to them. I also don’t often talk about it. I bring up my diagnosis if there is someone who I am hoping to help with information I learned because of my relationship with MS, or if someone asks what I’ve been working on. This site when I mention it often leads the person I’m talking to, to ask if I have MS, and when I’m asked directly I don’t lie about it. I’ve even wondered myself if I “really” have MS, but I have not been able to get a doctor to consider this possibility because of those dang spots on my brain.

MRI from November 2014

Many times when the “truth” does come out, a flurry of “Oh I’m so sorry!” and “How are you feeling?” type comments come spewing out of their mouth, I then calmly smile and let them know that I’m lucky, I haven’t personally been experiencing symptoms as of late, and also I often mention that I have my “toolbox” of ways to deal with symptoms when they do come up and they seem to be working for me. I sometimes feel almost guilty (and always grateful) that I feel so normal.

Here are some answers to questions I’ve seen/heard asked many times over the years:

How do you treat your MS?:

Mostly I take supplements (as recommended by my naturopath based on blood tests) and am careful about eating as much organic vegetables and fruit as possible along with smaller portions of meat and organic rice. I focus on keeping out the chemicals used in conventional farming and food processing. I avoid things like fast food, boxed food, and milk.

What have you tried that didn’t work and why?:

When I was first diagnosed in 2001 I was put on Avonex right away. This only lasted for about six months because it made such a horrible impact on life. I was a Junior in college and feeling like I had the flu once a week along with a super busy schedule did not work for me. After this I was switched to Copaxone for a few years, I eventually stopped when I was pregnant the second time. I hadn’t been good about taking it regularly anyway and the doctors I had at the time didn’t want me using it while pregnant. I haven’t felt tempted to go back.

What advice do you have for a mom recently diagnosed re choosing a treatment?:

I would recommend doing research and asking lots of questions. There are so many ways that people are treating their MS that is or isn’t well known at this point. This is a big part of why MomsWithMS.org exists is to give moms access to each other quickly so that you can meet women utilizing anything from the big ABC’s (Avonex, Betaseron, Copaxone) to things like CCSVI (Chronic CerebroSpinal Venous Insufficiency), MMJ (Medical Marijuana), HSCT (Hematopoietic Stem Cell Transplantation), LDN (Low-Dose Naltrexone), IVIG (Intravenous Immunoglobulin), Naturopathy, a variety of dietary methods and more for example, most of which recommend avoiding dairy for reasons discussed by Naturopath Fiona in videos on her page. Sometimes doctors don’t stay up to date on the current trends/treatments/nutrition and what is working for people in other parts of the world and so it is important that we advocate for ourselves. This advice is near opposite of what I was told in 2001 which was to not look online, but things are changing so fast I feel it is very important.

UPDATE: I just ate my lunch after publishing this post and realized I left something out. We are normal. We are all human beings and something I’ve realized in the last 15 years is that just about everyone thinks there is “something” wrong with them. 1 in 5 people have an autoimmune diagnosis of some kind and more are being diagnosed each day. Let’s all make the best of what we DO have and focus on that, in my experience it helps a lot to improve what works and sometimes forget about what doesn’t, because it just might start working again. Just being a mom will expose you to TONS of other moms and what I’ve noticed is that we’re all trying to do better…we really aren’t that different. In many ways we have a special perspective about things that might be more worrisome to someone else, because having experienced something as serious as MS and what we go through to get diagnosed gives us a kind of strength. I hope you all find the beauty and strength within yourself because you are normal in the most awesome way, we are alive. We have created little humans and we are raising them each day. Go MOMS!!

Please contact us with any questions by commenting on any post or through our contact page, we look forward to hearing from you!

 

Helpful Tips for MS and Cold Weather (Cold Sensitivity!)

We get a lot of information about how many of us that are diagnosed with MS have heat sensitivity issues. During the summer especially we hear about where to get cooling vests and what different methods those of us who do experience heat sensitivity use to cool off. Less attention is paid to the other end of the spectrum…which is the sensitivity to COLD. Personally I am a lot more comfortable in warm climates than cold. I often have very cold hands and feet and feel like I really tense up all over when the weather gets colder. Here are some of the things I do to try and keep warm this time of year, no guarantees or anything but these things help me!:

Layers:
Mom was right! Layers absolutely help. Recently I’ve been making sure I have a pair of long underwear or leggings on under my pants, just about always. To make sure they don’t get awkwardly pulled up when putting on my jeans or boots I pull my socks over the leggings too.

Drink Hot Stuff!:
I love my coffee in the morning, personally though I try and stop drinking caffeine by noon. I switch my drink of choice to tea or what I call my “ginger water” which is just a few slices of ginger either put into my teapot with hot water or boiling the water on the stove with some ginger in it. Sometimes I add a little bit of turmeric as well but that is to help with inflammation more than temperature.

Heating Pads:
I absolutely love heating pads…I don’t currently have one but in the past I have used an actual electric blanket at times and at other times a heating pad. They help a ton for me when I’m really cold, especially when I am trying to go to sleep and the coldness is keeping me from relaxing. I’m also a fan of the hand warmers that are little packets of warmth that can be used on occasion.

My Family:
As a mother of three that participates in our version of “Attachment Parenting” I very much appreciate the little warm bodies that tend to surround me. I co-sleep with my kids and most nights have anywhere from 1-3 little people surrounding me. It definitely affects the quality of sleep (they seem to have a hard time holding still!) but they also improve it since they are like little furnaces temperature-wise. My husband of course is also wonderful when it comes to warming me up but at night the kids are usually occupying the both of us.

Hot Shower/Bath:
Might be obvious but sometimes I am very happy to remember that we do have hot water in the house. If I take a warm enough shower I definitely feel warm to the core and if I can dry my self fast enough and put some lotion on (I use coconut oil) I am super warm. It helps if I start the shower warm and slowly ease the temperature higher since with my cold feet the warm water can feel almost scalding!

What do you do? I’m always looking for more tips to add to my toolbox…I’d consider adding a treadmill to this list but since I have to go to a gym to do that it is less than convenient…anything you recommend?

Are you an Artist? MSAA Accepting Submissions!

In my life, the most effective way for me to deal with a situation has been to create art. I consider it to be a form of meditation and take part in it whenever I can, and luckily for me when I was diagnosed and in college I had ample time to so while sitting in class. Many times for me this has been drawing in my sketchbook while in class or listening to a lecture and also when I have what I need (time, space, paint, canvas) I love to paint as well. I have often seen the opportunities to submit art for various MS showcases too late which is why I wanted to share this with any of you that might be interested!! I just got this email today from MSAA:

Eligibility:

  • To enter, you must have a diagnosis of multiple sclerosis and provide a copy of a doctor’s verification of your diagnosis.
  • Participants must be 18 years of age or older as of the date of entry.
  • Your submission is not complete until we have received your signed Release Form. This can be completed online below, or printed and mailed to:
    MSAA Art Showcase, Attn: Angel Serrano, 375 Kings Highway North, Cherry Hill, NJ 08034 before the deadline.

The Art Showcase will first appear on MSAA’s website during March 2016 in recognition of MS Awareness Month. Select pieces will be highlighted throughout the year on our website and in the 2017 MS Ability Calendar.

Submissions for both Art Showcases will be accepted between October 15 and December 18, 2015. 

** Please read through all contest rules before submitting your work.**

More information is available at the MSAA’s Annual Art Showcase Call for Submissions Page.

I’m Dr. Picone – Raising Awareness for MS !

My name is Dr. Picone; a 20+ year Neurologist treating patients with MS.  I currently practice at Holy Name Medical Center in New Jersey.

The reason I am reaching out today is to humbly ask for your help in promoting our Indiegogo campaign launched on Sept 9th.  I have been investing a lot of time in money over the last 8 months getting ready for this moment.  The project is MS Connect.

Our Mission Statement:
MS Connect is a mobile app striving to create an organized and centralized platform for coordinating MS care. We are creating an app specifically designed to improve the quality of care for patients with Multiple Sclerosis. The MS Connect App will provide patients with an easy way to stay connected with their health information, while providing physicians with a multifaceted view of a patient’s disease progression.  This mobile app is not the cure but it is a step in the right direction.  It will greatly increase my ability to treat people with MS.
Our slogan:  Making Physicians better Physicians and Patients better Patients.
Here is one of the videos:

We are looking for people to really get behind this campaign to help get the word out to their family, friends, social media accounts, newsletter, etc!
I’m really banking on the strength of the MS Community to rally behind me and spread the word!  I have about 50 people, organizations, and social influencers on board to help so far.  Will you join me?!

With Respect,
Dr. Picone

Mary Ann Picone MD

Board Certified Neurologist

Member of New York Consortium of MS Centers

Board Member MS Hope

Facebook Page

www.MSConnectApp.com

@MSConnectApp

Moms with Disability Survey

Looking for participants for an online survey for mothers with physical or mobility disabilities UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy. To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities. If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff. (UMMS IRB ID: H00001202)