Breastfeeding and Meds (by Hannah)

This week is going to be a very difficult time for me emotionally. Tomorrow I have to get back on my MS meds. Tecfidera cannot be taken while pregnant, so I got off of it when I got pregnant with my sweet #3. Then she was born and I wanted to breastfeed for 3 months while I pumped enough breast milk to get her 6…read more

This story (in its entirety) originally appeared on Mormon MS Momma and was republished here with permission.

Moms With Multiple Sclerosis

Did you know there is actually a lot of famous moms diagnosed with MS? Here is a list to tell you about a few of them… While the diagnoses is always difficult, being a celebrity mom diagnosed with MS adds the challenges of keeping up with social appearances and pressures. So which celebrity mothers have been diagnosed with multiple sclerosis?

Ann Romney:
Wife of the 2012 Presidential nominee Mitt Romney, Ann Romney was diagnosed with multiple sclerosis in 1998. Together Ann & Mitt have five children. Ann initially used more traditional medicines to treat her symptoms, but later turned to alternative treatments such as acupuncture and Equine therapy. Equine therapy, also known as hippotherapy, uses horseback riding to improve core strength and limberness. This type of therapy dates back to 500 BC and is used to treat a wide variety of illnesses.

Anne Rowling:
Famous author J.K. Rowling’s mother, Anne Rowling, was diagnosed with MS and died at the age of 45. J.K. Rowling became a household name after publishing the Harry Potter book series. She has served as a patron of the MS Society in Scotland, and has donated millions to MS research. Her most notable donation of 15.4 million was to start a research facility at the University of Edinburgh, which will be named after her mother.

Marilyn Wilson:
Shemar Moore’s mother was diagnosed with multiple sclerosis in 1998. Shemar is best known for his eight years as Malcolm Winters on The Young in the Restless, and currently costars in the hit show Criminal Minds as Derek Morgan. He was also formally a fashion model and host of Soul Train. He and his costars have done several charity events to raise money for MS awareness and research.

Annette Funicello:
Annette Funicello was another famous mother with MS. She begin her acting career at the age of 12, starring on the Mickey Mouse Club. She later co-starred in several beach movies with actor Frankie Avalon. Annette Funicello tried many experimental, and sometimes controversial, treatments to improve her symptoms.

Teri Garr:
Best known for her comedic acting, Teri Garr revealed in 2002 that she was diagnosed with multiple sclerosis. She has a daughter named Molly. She was made famous for her roles in Young Frankenstein, Close Encounters of the Third Kind, The Black Stallion and Tootsie, among other movies and television series. Teri has used traditional medicines in addition to regular exercise to help regulate her symptoms. She especially enjoys the benefits of Pilates. Terri is also an Ambassador for the Multiple Sclerosis Society.

MRI Results + Action Plan

As I close out 2014 I’d like to express gratitude. November in particular was a crazy month for me. On November 1st, I hit my head. This wasn’t a huge deal when it happened (or so I thought) but then about 3-4 days later, I had a brain fog unlike any I had ever experienced. I was hardly able to think of words and definitely spelling them was a huge challenge, I found myself repeating words in my head to try and figure out the letters that made them sound like that. I was typing about 35wpm, which for someone usually typing between 70-80wpm was definitely a hit.

I knew this could be my MS coming into play, and I admit I was kind of relieved when I googled “concussion” and found that the symptoms I was experiencing were sometimes found during a concussion too. I decided to go to Urgent Care and they were able to convince me to contact my long lost neuro so I could get an MRI just to “check things out” you know “just in case”.

It has been a long time since I saw my neuro, and it had been five years since I got an MRI. The MRI was taken about a week after the fall, and the visit with the Neuro to evaluate it was about three weeks later. This has it’s benefits in that I don’t usually worry about my MS, and I’m lucky because I don’t usually have very many symptoms, also those that I do have are pretty intermittent. The cons though, are that we don’t know if this all “just” happened when I hit my head or if it has been getting worse this whole time. Here is an example of one of the active lesions, look at the white spot that has almost an aura around it here:

See active lesion in the right side of the picture.

See active lesion in the right side of the picture.

Not to mention the number of other less active lesions shown. My Neuro would like me to start one of the many drugs that are on the market, so that I don’t get so many lesions. Her interpretation of the lesions seemed almost that they are landmines, and that one of them could ‘go off’ and knock me into disability. We decided that I would continue doing what I’m doing, and take good care of myself and then we would see if any change has happened in 3mo or so.

I also had an appointment with my Naturopath, to go over the MRI and get some suggestions about what to do. Interestingly the goals and philosophies of the different doctors were very dramatic, for example the lesions I was told are NOT an indicator of disability. He pointed out that my brain was pretty lit up yet I am doing great (my symptoms went into remission and I’m no longer having trouble walking/speaking). He said that sometimes there are people with hardly any lesions that are in wheelchairs for example.

Life IndiegogoIn the middle of all this I got both my MRI bill, and an email that Indiegogo had started their Life.Indiegogo.com platform, so I promptly created a campaign to help me cover the MRI bill (which is over $1,000 dollars). Money is really tight right now and it is frustrating to have another big bill like this. I don’t have a “job” and so like the campaign says, any little bit helps!

Some of what I’m doing to take care of myself is to continue with my pretty strict diet of no grains, lots of vegetables and little bit of meat. I aim to eat a rainbow of plants each day and I’m getting reacquainted with my juicer. I am continuing on my Spiritual Journey and am signed up to take a “Self Mastery” class at the Center for Spritual Living. My doctor also encouraged physical exercise, so my bike and the pool I have access to near my house will be getting a lot of attention, emphasis was put on physical activity that forces the two sides of my brain to work together, I might start jogging too and yoga will definitely stay in the picture. I love getting exercise and appreciate having an excellent reason to get more of it!

I’m also reading a great book called Radical Acceptance. This is because I still have a lot of unresolved issues in my life (aka I’m human) and the holidays really bring them to the forefront. The book goes into detail and meditations and more to stay in the present and to not get stuck in the past or worrying about the future. Lots of self love, and it is doing me good so I thought I’d mention it!

Other than all that heavy stuff I’ve been working on clearing out clutter…piles of paper, cleaning the kids room and that sort of thing. Moving so many times in the 8 years since I have moved to Seattle has taken quite a toll and I think I’m about done with carrying around all of this “stuff”.

This story originally appeared on KristinBennett.com and was republished here with permission.

More than a community…is it time?

MomsWithMS.com has existed as a private peer support community for over five years at this point. We have over 1,100 members on the site. I (Kristin) created the site on a whim that there was probably other moms out there diagnosed with MS that might be feeling alone, and be desiring a person to talk to who could relate to the joys and struggles of parenting while dealing with MS.

Up until now the whole MomsWithMS.com effort has been just that, it is an online community supported by @MomsWithMS, a Facebook page, and also spearheading the Moms with MS fundraising team for the National Multiple Sclerosis Society.

After this much time though needs have become clear, for example getting a babysitter (or money to pay a babysitter) so that one could get an MRI. I have even gotten phone calls from the article published a few years ago by MSAA from women who didn't have access to a computer. Finally there have been MANY calls for help with things like housekeeping which is especially hard for a mom with small kids and a disability to maintain.

It would be nice if we could just "give" what is needed to all of these moms. Currently the community site as well as this site is funded as a "hobby" with expenses of approximately $50 a month to maintain. If we could however become registered as a non-profit we could run real fundraising campaigns to not only keep these sites up but to start offering some of the needs that are very real to so many of the 1,100 moms.

Problem is, up until this point, the majority of keeping all of this going has been on Kristin with a people stepping in to help host events, run fundraising teams and of course everyone participating on the community website.

If it were up to you, would you support the movement to turn this small little sole prop/hobby into a non-profit? Do you have the skills, passion, social reach and determination to help make this happen?

If you answer is YES to any of those questions, please contact me at Kristin@MomsWithMS.com and let me know your vision and how you could help.

Thanks for reading! If you really want to make this happen please share this with anyone you know who could be helpful in making this happen.

Happy Holidays!

Origins Movie

I’m not sure how much longer it will be available online so I had to share while I had the chance! They are discussion myelin and much more about brains through out the whole thing. Fabulous movie I’m definitely getting the DVD copy.

It interviews a number of people who I have read books by and who I respect highly in the world of wellness of ourselves, our children, and our mother, planet earth.

Mom Story :: 10 Years Later

Mom Story :: ChristinaIt was June 2004 and I was so busy getting ready for my September wedding that I was planning for almost 2 years. It seemed as though one day I rolled out of bed and could barely stand on my own two feet. I was so dizzy, a very strange light-headed dizziness. Everyone was convinced it was stress or maybe an inner ear infection. I started noticing other weird symptoms…like my right arm would get very cold and numb, my eye would start twitching out of nowhere, and these wierd “muscle-jumping” sensations. Of course when I googled all of this it came up that it was MS, which everyone laughed at and thought I was just a stressed out bride to be on the verge of a nervous breakdown.

After going to an ENT and even getting round of antibiotics (imagine it was that simple!!) I finally went to another doctor who sent me for a brain MRI in fear it was MS or a brain tumor. After the test I will never forget that my films were placed on the top of the pile…which is never a good thing. The next morning as I was in training for my job at the time there was a bunch of calls coming in and I found out that I had 13 legions in my brain and I had MS. It was a very emotional time and I was unsure what my life would become.

My soon to be husband stood strong by my side as well as my family and friends and we made it to the wedding and thankfully I felt good by that time.

I just had my 10 year MS anniversary and will be celebrating my 10 year wedding anniversary this September. I like to think my husband and I have a very strong bond after going through that right before our wedding. Our “in sickness and in health” started before our vows were even spoken. He has never missed one doctor’s appointment or one treatment in 10 years. I have an adorable little boy and a beautiful life. I also am under the care of an extraordinary doctor who has halted the progression of my MS and kept me attack-free for years.

This summer I will start planning my first MS fundraiser, which will take place in May 2015, so I can give back for the many things I have been blessed with.

**Event information coming soon!!

By: Christina Benevento