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.

Choosing to Just Do It!!

Treading WaterI had an awkward experience this summer that felt like a good one to share. It’s isn’t really about the MS part of my life as a mom, (though my legs were partially numb!), but I think it is still relevant because sometimes we have a choice, if the situation/our bodies aren’t working/looking quite right, but good enough we can choose to just go for it, or sit out. Of course if we can’t we can’t, I’m not telling anyone to do what they can’t, but if we have a choice, go for it!!

“I was at a family camp, we go for a week every summer and my oldest daughter (on the right) absolutely LOVES to swim in the lagoon that they have there off of the sound. I knew this ahead of time and made a point to be sure to bring everyone’s swimming suit, including mine, particularly since I had recently…read more

This post originally appeared on KristinBennett.com under “Just Do It!!” and both post and picture are shared/linked here with permission.

Where Do Kids Go When Mom Needs MRI?

MRI

For any of you who don’t know, this is an MRI machine…it is basically a giant loud box that we slide into after we lay on that padded part and our head is gently (but firmly) clamped down so that we can’t move it. Sometimes we get an IV attached too for various reasons involving contrast and probably other reasons I don’t know off the top of my head. Once all that has happened, the whole part we are laying on slides into that hole, a kind of dark cave withing the machine, where we stay for as long as they require to get the images they need. We spend anywhere from about 20 minutes to more than an hour in there holding as still as we possibly can.

My kids, are finally at an age I have times that they are in school, and so I can schedule MRI’s to happen at those times. It was not always like that though, for example when I was a single mom and my daughter was a baby, I did not have time like that. Except for the times when I was working and she was in daycare, of course I couldn’t really go get an MRI then because I had to be at work!

I am curious to know what everyone else has figured out. For me, I mostly didn’t get MRI’s when I had young kids, sometimes I did but I recall it being pretty stressful to get someone to watch my little one(s) while I spent time in the tube. I am very fortunate to have supportive family via marriage, though I know that is never a guarantee.

Do you have family support? Daycare? Babysitters? Has it worked for you? Did you try to get help from any MS related organizations?

Thank you for taking the time to let me know!! You can also send me a message if you want to share privately, you can comment and ask that it not be published and I will reach out to you. If you are member on the private site you can also login and comment there if you prefer as well.

PC594: The Art of Rebellion

Lydia Emily, a mom with MS who has helped so many people with her artwork has a story that we all want to hear about. Fundraising for this project is going on now and has 21 days to go…they are just over 1/6 of the way to their funding goal and of course there are some awesome perks for this one as well:

Some of her artwork includes…

Lydia was diagnosed with primary-progressive MS three years ago, which means that her condition will only worsen. But this doesn’t dampen her rebellious spirit. Lydia rebels against the idea that because she’s been hit with hardship, she should give up.

Diagnosis is Not all of Who You Are

IMG_1360You are much more that your Multiple Sclerosis diagnosis. I like to candidly say that MS is merely 2 letters that are in my medical record. Sometimes those two letters impact me directly, but sometimes it is something else. When I was newly diagnosed (dx 2001) it seemed like I had way more “symptoms” because it seemed that nearly anything under the sun qualified as an “MS” symptom. It took me a few years to realize that on top of having this diagnosis…I am still a human being.

That sounds wrong, I knew that I was a person of course, I still had my college classes, homework, jobs and more to keep me from focusing too much on the diagnosis. It wasn’t til later that I realized how easily I was impacted by things that seemingly have nothing to do with MS though. For example it was a HUGE aha to learn that one of the most MS-ish symptoms I’d had could also be caused by a deficiency in B12. The symptom I am speaking of is called L’Hermittes, it is a totally weird symptom to experience that I can only describe as feeling like my spine felt like it was transformed into a guitar string that was being plucked every time I looked down. I was kind of excited the next time I felt the symptom because I had a new tool, I didn’t just have to wait and hope that the symptom went away, I could just try taking a vitamin, and it might work! I have been luck to learn about lots of random tips and tricks like this and because I have lots of little things to try it keeps me from going to the doctor so much. I’ve read a few Tim Ferris books (like 4-hour workweek) and I use myself as my own test subject. I am not as good about keeping notes and reporting back on them but for the things that affect me I tend to remember, or at least find myself checking the same sources to find the same answer.

Being a Mom is of course a huge part of who I am. I am also a graduate of a prestigious design school where I managed to earn my Bachelors of Fine Arts. I moved a lot as a kid from Alaska and went to more than 10 schools though still graduated HS on time. All of this was unfortunately before Facebook and so I’m not connected to as many childhood friends as I would like to be. Some people don’t realize that I was a single mom, before I created the Moms with MS sites but well after being diagnosed and becoming a mom I successfully worked at a software company full time for a few years! It wasn’t until after I got married and during my second pregnancy (and recession) that I was laid off and created the online peer support communities with my nervous energy between looking for jobs and nursing my baby. I’ve considered a huge amount of other career paths ranging from “Art Therapy” to learning some code and more. I’m still exploring and still learning every day! I love gardening too and have the idea in the back of my head that I should perfect the home vegetable garden and help people get their own started! I just need to neaten up my process…

Seeds Sprouting

There is of course even more to me but I’m really interested in hearing about you, and who you are other than being an “MS Patient”. I bet we all have our own unique stories and a lot more to talk about than just that one diagnosis. It definitely helps to get that story told but there is always more. Do you agree with this?

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!