My buddy, my pal, my friend.

As a parent, you work had to protect your children and give them a childhood free from the challenges and responsibilities that come from adulthood until it becomes time -preferably when they turn 18 and leave the home. But for me, I never thought the tables would turn before I reached my 35th birthday with the diagnosis of my MS.
My life story may be long and complicated, but the real hero of my story has been my daughter, Becky. I never realized how important she would become to me, not only as a 20160229_193909friend but as a caregiver to me and her brothers. As a child she witnessed me being abused by my ex husband, she saw me struggle as a single mom that was homeless with 2 young children while trying to get back on my feet. Then I received my diagnosis 2 years ago, and she was the one who came to the rescue to help me when I had a husband who was dealing with his own demons. She cooks, cleans, manages to keep straight A’s and prepare for high school next year while keeping up with her 3 brothers -2 have ADHD and require constant supervision. From the very beginning I chose to be honest and open about my diagnoses. She went with me to pharmaceutical dinners, I provided her books from the NMSS that were geared towards teenagers to help her understand what I was going through and how it would affect her. She has had the hard task of explaining to her friends why she can’t hang out with them sometimes or why she has more responsibilities then they do. Never once has she complained how hard her life is. I have moments of guilt with her doing so much for me, but I love her and give her more freedoms as reward for her hard work. I’ve had a long talk with my daughter about her life and learned the hard truth that my life has been MS first and family second. My own daughter felt unable to tell me how she felt and be selfish with her life because mom has always come first.
MS is part of my life but it doesn’t have to be a us priority. We need to never forget that our children are “living” with MS too. They may be hiding their true feelings because they think we are too tired and don’t have time to listen to them. Take time to have mommy and me time. Do something special for your younger caregiver to show that they are loved and appreciated. <3

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

Quality Over Quantity

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When you are diagnosed with a chronic illness like MS, a lot of things change after. If you think your life won’t change you are in denial because it does at some point.  Some friends you tell about your diagnosis are there for you no matter what and provide you unconditional support.  You know the kind of friend where it doesn’t matter how much time has gone by when you talk or get together it feels like you never were apart when you see each other again. Others unfortunately avoid you after you are diagnosed like the plaque or they slowly treat you different over time. Even people who were friends for awhile before you got diagnosed disappear or don’t want to keep in touch or return your phone calls anymore. At first I used to wonder why they would do this to me or beat myself up worrying if I did something wrong.  This has happened to me as I’m sure it has to many of my fellow MSkuteers but this has shown me that its more about the quality of my friends for me now than it is about the quantity.  I was once told you can always count your true friends on one hand. This is still true for me today. I have had friends come and go in my life but the closest ones to me in my life I can always count on.  I know these chosen few I can count on my one hand who are always there if I need to pick the phone up to talk. I have always taken it personally at first when a friend decides not to be a friend anymore.  Why do some friends leave us? It’s not like they can catch MS from us. Do they think for a second that we wanted to get diagnosed with such a nasty MonSter?  I might be physically different than I was before but I am still the same person inside. When this happens we wonder why we said anything at all to them about our MS.  If they knew us well enough and tried to understand our chronic illness they would know we have good days and bad days like anyone else. It is awful if I have made plans and I end up not well that day so then have to cancel but its not like I wanted to cancel its just that I knew my body wasn’t up to going out.  If I know I have something I am going out to coming up I have to prepare and get my rest many days in advance. I know the average person might not have to do this but we with this MonSter do.  I mean the energy it takes to get ready from having a warm shower, to doing your hair & make-up to getting dressed takes a lot out of us in terms of physical exertion. It’s like I am all dolled up ready to go out and I have no more energy left to actually go out sometimes.  My close friends that know me well know this and don’t even second guess if I can’t go or can’t stay out too long.

Going through some good times and hard times with many friends (even some friends who also have MS) has also taught me the ones worth having around don’t make things hard on you. They just love you for being you and you don’t ever need to worry about their caring or loyalty because they are always there if you need them.  These are the true friends you focus your time and energy on because lets face it life is too short and none of us know how long we have on this earth. Some friends may come in your life for a season and then go after awhile and that’s okay too. They came into our lives for a reason in the first place and were not meant to stick around for the long haul.  So take the time when you can to show these close friends in your life how much they mean to you. These are the friends I truly cherish.

“A true friend reaches for your hand and touches your heart. ~ Author Unknown”

Until next month,

Michelle

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!!

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