Laugh or You’ll Cry- Mothers own story

81K0VwR9OXL._SL1500_Hi- I am a Virgin Blogger- this is my first BLOG (post)! 

I am a mum with MS, & wrote a book last year about life ‘Laugh or You’ll Cry’ a kindle read on Amazon.

Many thanks, Sue

“For most mothers, keeping up with the washing, the mess and the irrepressible energy of two young boys is a challenge in itself. But when Sue Askin’s eldest son was diagnosed with autism, only to be followed by her own diagnosis of MS the next year, the challenge became ever so slightly harder…

Told in her own upbeat words, this is the heart-warming and funny account of one woman’s determination to do the best for her child, whilst learning to cope with her own diagnosis without any fuss.

Packed with funny anecdotes and familiar challenges to which all families will relate, you’ll be uplifted and inspired as much as you’ll be smiling.”

Note from Kristin: I’m so happy to see a mom tell her story! Please check it out and let me know if you have your story out there to share as well. Sue thank you for writing this your journey is inspirational!!

-Kristin

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!

 

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

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

New York Local Mom Group

NewYorkOur next featured local group is for New York Moms!! This group was created by a member and has a number of moms who are from all over the state of New York. To join this group is to connect with other moms who you might be able to meet up with and definitely exchange resources and recommendations.

Local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet! So if you are a mom with MS in New York we hope that you will join! You can also promote your own local group that you might have established or maybe you want to start a new one from there.

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions! If we don’t have a site for your locality yet then you can Contact us.