24 Years Ago, Bombshell was Dropped..

M_WalshHello my name is Michelle Walsh and I was diagnosed with MS 24 years ago. It all began when I was 18 years old, in my first semester of College, living an hour away from home when I started to notice something was not right with my body. I got very electric pins/needles in my arms and legs that were so painful it felt like they were plugged into the light socket. I went through 4 different emergency room visits only to be told by the doctors “it must be stress and go rest you will feel better”. As the weeks went on I didn’t feel better. Things got worse with an over whelming fatigue I could barely get out of bed in the mornings no matter how long I slept so I called my parents to say I know there’s something else going on with me. My mom is a nurse and she knew there was something not right either. I drove home to see my family doctor who then referred me to a Neurologist who specialized in MS. The Neurologist did several neurological physical tests and after he said “I am 90% sure you have Multiple Sclerosis” Over the next few months I had a spinal tap and MRI that confirmed this. I have never forgotten this day the bombshell was dropped.

I was initially very mad and sad. I thought what kind of life will I have now? Will I ever find anyone who will want to marry me because of this diagnosis? So many emotions went through my head for the first while sad, anger, disbelief, etc. I just couldn’t understand how I could run long distances before and be so active months ago to now being so tired that I can barely get out of bed. I was diagnosed with Relapsing-remitting MS so when I learned to pace myself, not over do it I could manage this MS monster.

I competed for Rodeo Queen Contests and won two titles to then advance to compete for Miss Rodeo Canada. Another one of my dreams was to be a Flight Attendant and I went on to do this too. I flew all over the world and saw so many amazing places and worked with many amazing colleagues. I also in this time of my life met the man of my dreams. Mutual friends of ours set us up and we hit it off instantly and have never looked back. We have been together for 13 years now, married for 10 and have three beautiful, healthy children. We live on a mixed farming operation in southwest Saskatchewan.

So after being diagnosed for over 24 years I have learnt a lot of things that I want to share with others who have MS

  1. To take this MS monster one day at a time. Be kind to yourself and stop putting unrealistic expectations on yourself. If it’s the kind of day where you are fatigued then prioritize what really needs to get done to get through the day and what can wait for another day.
  2. Accept the kindness and help of others if they are offering it. Trust me this is still a hard one for me to deal with because we want to try to be independent as long as we can. But if someone is offering to help you out when you are not feeling well this is out of kindness and concern for us and you should take it because you are no less of a person for accepting their help. You are just being smart in conserving your energy and realizing that others care and want to help.
  3. We lose a lot of dignity with this disease be it with our bladder, bowels, vision loss etc and if you set your pride aside and use the devices that are available to make your quality of life a little easier this will help your stress levels. Once I got past my pride and realized I needed the cane/walker/scooter to get around with it made my life so much easier with less falls.
  4. Try to talk to someone you trust be in a close friend, relative, your psychologist because keeping your emotions in will not do you any favours but it physically flares up your MS. Also doing whatever type of activities to help manage your stress such as yoga, meditation, massage therapy, listening to music you like whatever works for you helps to keep your stress levels down. This is so very crucial in regards to managing our illness. When I worry or get stressed too much this can bring on a relapse in a heartbeat for me.

I am so very honoured to be Blogging for Moms with MS now and hope I can connect with other MSkuteer moms and dads out there so we all feel connected and not alone. Living with MS as a Mom has its challenges for sure but it can be done.

Please connect with me on Twitter @exflygal
Facebook https://www.facebook.com/mwilwal

Until my next blog take care,

Michelle Walsh
Saskatchewan, Canada
Board Member for Canadian Neurovascular Health Society
www.cnhs.ca

Introducing Michele Mateus our new blogger here at MOMS with MS

Hi I’m Michele Mateus and I am excited to be a new blogger here on Moms with MS.

I was diagnosed with Relapsing Remitting MS in 2008 in which presented itself with optic neuritis. In 2011 I was hit with a huge relapse that left me in a wheel chair for 5 months then a walker after that for another 3 or so, and a long road of rehab to get strong again. During this period I was blogging for the WAMS Foundation (who helped me in fundraising to get my CCSVI) and I loved blogging and sharing my experiences and outlooks on how we can live with the MonSter. When I stopped blogging for them I missed it but was not sure where else to blog and starting my own seemed all to overwhelming. Fast forward a few years and here I am sat now as a new mother, and like many new moms do I was struggling with the new role, but also my MS was there in the background popping up on days when I really could have done without. So I searched for resources on being a mom living with MS and I came across Moms with MS. I was excited to see that there was a blog and an online community of other moms that would really understand what it is like being a mother who lives with a chronic illness. Meeting new mom friends is hard enough to say the least, so finding this space was very exciting to me!

I reached out to Kristin that started this site and after we started chatting a bit I remembered that she read my old blog and would often retweet and share my posts; pretty cool how things often go full circle in life. She asked me if I would consider writing for Moms with MS. When you blog for something you believe in, something that is part of you it makes you vulnerable but it also empowers you. Some of the things that came to mind when she asked me were:

  • do I want to go ‘there’ again? ‘There’ meaning opening up to the world and sharing my inner thoughts and my challenges (and of course success too!) in a world that is so much more online than it even was 4 years ago.
  • I worried that putting myself out there again could effect my professional life and my photography business. Would people judge me and see me as someone not as strong that they could rely on because of my health condition?
  • Would I loose potential clients if they knew I had MS? Would my peers think I can’t do my job well because I am ‘sick’ (ps: I don’t think of myself as being sick, ever)
  • Do I even have time for this?

After I went back and forth on the worries I had that were blocking me to do this, I then thought of the positives.

  • When I blogged before my blog was very active, I would often have upwards of 10 comments on each post that became like mini discussions, which was great to be part of.
  • Blogging allows one to connect with others that are experiencing the same thing and makes you feel you are not alone.
  • Blogging makes you feel part of something bigger and positive.
  • Blogging can be therapeutic and help one work through some of the struggles faced when living with a chronic illness.
  • As someone that loves to research blogging is a great incentive to do so, reading about new therapies and ways of self care, which are things I used to read about and do so much more before becoming a mom, so in this case blogging is also a motivator.

After weighing out my fears vs. the positives that could come about joining Kristin I finally told her it was a YES and I was ready to go! So here I am introducing myself to this community and excited to be part of it. It is my goal with my blog posts to share some of my experiences as a mom living with MS and hopefully start some discussions around what that looks like and how we as a community can support each other. By we I don’t just mean moms with MS, I also mean those that love and support us as well as the general public. Knowledge is empowerment and if more people learned a bit more about the other we would cultivate more compassion and understanding in the world, and hopefully have less judgment and conflict.

I would like to say a BIG THANK YOU to Kristin for inviting me to join her here! I look forward to connecting with this community.

Michele Mateus & Her Family

Michele Mateus & Her Family. Photo credit @Alyssa Kellert Photography

PC594 The Film by Libby Spears #LydiaEmily


An amazing woman with a message, and a story to be told. Using her talent to advocate through her art, LydiaEmily. She currently has a crowdfunding campaign to share her story via film with an award winning producer, please support her!!

We will be watching this campaign/film as it progresses, it is SUCH an exciting project!!

“Art can do more than just hang, it can help.”

Finished Seattle Run MS 2015!!

Seattle Run MS 2015I went to Run MS this year with my husband. We both wanted to try out the challenge of running a 5k (something that I had never done and something he hasn’t done for more than 20 years). When I registered for the walk, I think the easiest question was “Why” to which my answer was “Because I can.”. I plan on staying in shape and as healthy as I can and it just makes sense to add this to the mix! I’m grateful that I am able to do this especially 14 years after receiving this diagnosis. I’m happy to say that we both made it!!

Lucky for us his mom was willing to come to our house early in the morning and watch the kids so that we could do it, and really it all went really smoothly! Even checking in which I remember from past walks as being complicated was easy, simply because there weren’t nearly as many people.

I didn’t fund raise as much as I have in years past, this is because my energy was absolutely sucked up with trying to update our national team pages and also to train so that I was ABLE to do the 5k. I’ll consider doing it bigger next year since the pages won’t need to be updated and also because it should be easier to do the 5k the second time since I will be training more consistently now. I’d like to have a team tent again which requires a $5k goal last time I looked it up. It would be great to be able to have a meeting place for folks affiliated with Moms with MS and also to meet more moms who have MS.

The run itself was definitely a challenge, especially since I think I was still recovering from a long day of flying two days earlier on Friday. I was able to jog most of the time and finished it in approximately 39min, and I did stop at one point to use an outhouse along the way. It was nice that they had tags that we clipped on to our shoes so we could see our personal time after the race, Geoff was able to finish in 31 minutes.

Today I am totally sore, so I am doing these things:

  • Drinking some Calm water
  • Rooibos tea and
  • Tulsi tea to try and rejuvenate a bit
  • Epsom salt bath too.
  • This post originally appeared on KristinBennett.com after the first year of Seattle Run MS 2015 and was republished here with permission.

    Pacing for Pattisue

    PattisueSpreading awareness, did yall know yall can come join our team, even if yall can’t be in Oklahoma for the walk, the MS has walks all over, did u know yall can join Pacing for Pattisue and as a team member yall can do your own fund raisers,and if yall raise $100 or more ya get a really cool t shirt, each! Did yall know, that MS has no cure, but many types of MS, I actually have one of the worst types, I have PRMS, (progressive relapsing multiple sclerosis). There are so many ways anyone can help, for free,starting with sharing this link, spreading awareness is key to finding a cure, registering to join Pacing for Pattisue, is free if u sign up for a walk, or u can sign up to do a fundraiser, have a bake sale, all money raised goes to ms society… We may not find a cure in my life time and really I’m ok with that, so long as my life is documented and used to fond a cure for tomorrow, but we can’t do today with out your help, we need to spread the word about MS so people know about it and want to help. How can any one help if they don’t know what they are helping with………the best part about me having MS is that any questions u could ask me I actually know they answers ……

    I’m gonna tell yall a few things and it might be uncomfortable for yall to read, how ever its not easy for me to tell the world but if I don’t tell folks why would they want to spread the word about MS

    My name is Pattisue, I am 42, I am a photographer, I have PRMS , it does not have me. I am. Mom, nanna, a daughter, a fiance, an aunt,a sister. I am medically bed bound with out my chair, (the MS did not make me handicap however because of being handicap it did excelerate the MS) I wear pull ups, all day n night, my medical supplies cost $300 amonth, that’s just pull ups n bed pads, not anything else. I’m fat because I can’t get up to work out, not because I’m lazy, it hurts my feelings when people talk about my weight , I don’t really eat,because food is gross, all my teeth are rotting out folks like to say I must be a drug adict, well yes actually I am, I have to take 7 pills every morning 4 n the noon, and 4 at bed, I continuously look “high” because of the pills I have to take to allow me to live but, none of what I take regularly is a narcotic. I can crawl better then any toddler……why yes ms is all in my head! But I’m not mental! I have seizures and can’t stop the go…. I forget all the time,I have no short term memory,in part why I lug around a camera, but oh my damn I have a long term memory like an elephant….if I have a conversation with u, I may not remember that day, but if u give me enough time “to process” I will remember everything…..I can’t function in today because I’m still in last week. I cry uncontrolled for no reason, and sometimes I laugh when I shouldn’t, I’m not crazy, yes I know its inappropriate,but I just can’t help it, if ur talking to me and I just blank out n start twitching about, its not for attention, it means the MS is messing with me…. From my waist down I’m in constant chronic pain, I mean the absolute worst, (imagine ur legs going to sleep, that tingling and then for the fun of it dowse ur legs that are asleep in I don’t know propaine and throw a match, but wait that’s not it don’t forget to ad in Paul bundy dragging his dull ax down both at same time cuz he’s strong like that he can hold one in each hand, but make sure u put a bone knawing purana in the mix, and then twist the legs together like a rope and make sure u twist it so good that the legs are as not extended but always in a fetal position) all of that while trying not to throw up …….. Because u have a migraine that is older then moses……

    P4P_shirt

    I feel like the worst mom, partner on earth, because its sooooooo hard for me to move I absolutely miss my b12 shots, I’m always Soooo sluggish and it takes an act of congress to get me out of bed, my kids don’t like me, they just don’t get it, I forget so much I fear I will forget them if I don’t see them often ….. I have the worlds worst short term memory but long term….. That’s good stuff……….part of being a photographer I’m preserving my memories….. N letting The world see through my eyes what I can’t explain

    P4P_OAK
    And being a photographer is no easy task in itself, but when ya get dizzy n blurried eyed because of MS, you learn to make ur worst n greatest assets work together, so I use my photography to spread MS awareness let them both be my passion Equally …..

    Ok folks no I swear this is not a pitty party, but an awareness party, and its free to share this, the best things in life are free, prayers, hugs, sharing, caring,

    Now yall know more about me then I want the world to know, but how can we spread awareness if we doing know what we are dealing with…..

    This is my fight with MS will yall please come join our team. Thank u . Have a blessed day!!!

    Thank you Pattisue for submitting your story! Please feel free to share your Mom with MS story through the Share Your Story link. If you have read this I hope you are able to contribute to Pacing for Pattisue! You can also LIKE her Pacing for Pattisue page on Facebook!

    10 Months After HSCT

    #StopMS

    #StopMS

    As I write this I am sitting outside (in 87 degree weather) watching my kids run around at a local park. I can’t help but feel like this is a dream. A year ago today I started pre testing for HSCT with Dr Burt in Chicago. It hasn’t even been one year since my actual transplant and the ways my life have changed have been nothing short of a miracle.

    Recovery after HSCT is a rocky road but well worth it. It is very scary to feel old symptoms when an infection or illness presents. It is a vivid reminder of what life could have been like. It is close to heart breaking to think that every MS patient isn’t given this as an option to consider.

    It would be easier to list what has changed then type out a long paragraph for you all to read.

    What still remains:
    Hip flexor weakness in right leg
    Hamstring weakness in right leg
    Quad weakness in right leg
    Trouble with a walking pattern
    Trouble with balance (Low fall risk now)
    Weakness in right hand grip

    What has disappeared:
    Foot drop
    Numbness in right hand
    Numbness in left hand
    Numbness in face
    Numbness in chest
    MS hug
    Fatigue
    Optical neuritis
    Eye lid twitches
    Heat intolerance
    Hand eye coordination disturbance
    Bladder retention and incontinence
    Slurred speech
    Delayed thoughts
    Forgetfulness

    In a nut shell almost all of my cognitive and sensory issues have completely gone away. My motor function issues still remain but gradually improve day by day (except my foot drop, that is about 95% improved). Dr Burt says two years is the magic number for a baseline of recovery. I am anxious to hit that milestone.

    Recovery is not easy. It is a lot of ups and downs emotionally and physically. It seems like as symptoms start to improve they actually worsen first. Two steps back three steps forward. Sometimes to the point that the pain or loss of function is so much worse then before HSCT. This lasts about 2-4 weeks and then the symptoms starts to fade very quickly (within a week or two). The most painful reversal of symptoms so far has been the muscles controlling my foot that I no longer have foot drop in and my right hand which had motor and sensory symptoms. At times the pain seemed unbearable… But it was worth it.

    I can now take my children to school, watch them play at the park, I can stand long enough to wash my own dishes and do my homes laundry. I can go to school events for my children, I can go grocery shopping. I can do things by myself! I no longer need someone with me 24-7. I am able to be a mom again… I can not run around or walk like an average person but I can do it in my own way.

    Emotionally it is so hard for me to accept why didn’t any one tell me about this sooner? How could anyone of the many doctors I flew all over the states to be seen by not mention this? If I just would have had HSCT a few months sooner I would be an average regular person right now free of all of my past symptoms… That last flare left me with this severe damage that effects my leg. It’s hard to accept… However seeing the number of people that have found HSCT since I started sharing my story last year has helped make my recovery much easier. Knowing I have helped someone else rid their life of this horrible disease feels pretty awesome.

    If I had to do it all over I would have had HSCT done after I failed rebif and after failing Copaxone. When it became more difficult to “fake” being normal.

    I hope that message reaches at least one more person and saved their future also….

    Don’t wait until it’s too late…

    ‪#‎stopMS‬

    Until next time! Xoxox

    Heather

    This post originally appeared on Heathers HSCT Journey. We are sharing it here with Heather’s permission. Please take the time to visit and follow her page if you are interested in learning more about her experience of HSCT.