Happy New Year to my fellow MS Moms

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The New Year gives us a chance to reflect on the past year and be thankful for what we do have in my lives.  When you have a chronic illness like we do everyday we wake up and feel well enough to get through the day is a blessing isn’t it? We often might find ourselves making goals for the new year that are unattainable thus disappointing ourselves if they don’t turn out. I like to be realistic and set one goal because I found this is more doable. This year I am sticking to my goal of being more active as I can (or that my MS will let me of course) but I am a big believer that “if you don’t use it you will loose it”. So for one with mobility issues such as myself this means I am walking with my aids as much as I can to keep my legs moving. Others might only have the option of using their arms more now and that’s ok as long as you do something right? One of my  Dr’s who is practiced in Functional Medicine once told me avoid being sedentary. You could grab a water bottle and do some curls for about a minute every hour.  Some other activities may include walking, stretching, or trying a mindful workout. This means 10 minutes of quiet time to your self without distractions. I know this is a challenge in my house because with young children when do we actually get quiet time?  But really trying to make quiet time for even for 10-15 minutes a day for you can do wonders.

No matter what stage of illness we are in, whether we’ve just been diagnosed or we have lived with Monster for decades, there are adjustments we can make to increase the joy in our lives and to live more fully:)

 

Until next month take care of yourselves,

Michelle

Helpful Tips for MS and Cold Weather (Cold Sensitivity!)

We get a lot of information about how many of us that are diagnosed with MS have heat sensitivity issues. During the summer especially we hear about where to get cooling vests and what different methods those of us who do experience heat sensitivity use to cool off. Less attention is paid to the other end of the spectrum…which is the sensitivity to COLD. Personally I am a lot more comfortable in warm climates than cold. I often have very cold hands and feet and feel like I really tense up all over when the weather gets colder. Here are some of the things I do to try and keep warm this time of year, no guarantees or anything but these things help me!:

Layers:
Mom was right! Layers absolutely help. Recently I’ve been making sure I have a pair of long underwear or leggings on under my pants, just about always. To make sure they don’t get awkwardly pulled up when putting on my jeans or boots I pull my socks over the leggings too.

Drink Hot Stuff!:
I love my coffee in the morning, personally though I try and stop drinking caffeine by noon. I switch my drink of choice to tea or what I call my “ginger water” which is just a few slices of ginger either put into my teapot with hot water or boiling the water on the stove with some ginger in it. Sometimes I add a little bit of turmeric as well but that is to help with inflammation more than temperature.

Heating Pads:
I absolutely love heating pads…I don’t currently have one but in the past I have used an actual electric blanket at times and at other times a heating pad. They help a ton for me when I’m really cold, especially when I am trying to go to sleep and the coldness is keeping me from relaxing. I’m also a fan of the hand warmers that are little packets of warmth that can be used on occasion.

My Family:
As a mother of three that participates in our version of “Attachment Parenting” I very much appreciate the little warm bodies that tend to surround me. I co-sleep with my kids and most nights have anywhere from 1-3 little people surrounding me. It definitely affects the quality of sleep (they seem to have a hard time holding still!) but they also improve it since they are like little furnaces temperature-wise. My husband of course is also wonderful when it comes to warming me up but at night the kids are usually occupying the both of us.

Hot Shower/Bath:
Might be obvious but sometimes I am very happy to remember that we do have hot water in the house. If I take a warm enough shower I definitely feel warm to the core and if I can dry my self fast enough and put some lotion on (I use coconut oil) I am super warm. It helps if I start the shower warm and slowly ease the temperature higher since with my cold feet the warm water can feel almost scalding!

What do you do? I’m always looking for more tips to add to my toolbox…I’d consider adding a treadmill to this list but since I have to go to a gym to do that it is less than convenient…anything you recommend?

My adapted version of “SuperMom”

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Have you heard the saying it takes a village to raise a child.  This is so true and if you have a chronic illness then this manifests that concept tenfold I think.  It’s frustrating at times when we aren’t sure how we are going to feel from day to day so sometimes we might be a bit reluctant to make plans too far in advance.  I find this a challenge when it comes to my children’s fieldtrips at school.  When they are all day field trips I do not volunteer for them as they can physically be too much for me. I try to help with any that are shorter or closer to home because my children really want their mom at their field trips sometimes and I don’t want to disappoint them.  So in preparation for these days I have to really manage my energy days before in advance to ensure I am not doing too much physically.  I kind of think of my energy as a gas tank. Some days you wake up and you only have “half a tank” of energy so you have to prioritize what really needs to be done that day and choose what can wait for another day. I found using this terminology with my kids now helps them to understand better how I am feeling.

When hockey season rolls around like it will be soon I get pretty anxious as it takes a lot out of me to take my son to his practices and games etc.  Not to mention a lot of the arenas around here were built many years ago and are not accessible if you have mobility issues.  I am so fortunate to have an amazing friend who has a child on the same team and a lot of times last year my son caught rides with them that were away games because the driving just plain wears me out. I truly appreciate her kindness for helping me. Its friends like this I treasure in my heart because they really care and want to help.

I think this is where I carry some guilt when it comes to not being able to do more when it comes to my children’s activities.  I try to remind myself that I do what I can when my body allows me to and I need to let that guilt go for the times that I can’t help. I used to take it to heart what others thought or judged me for but not anymore because I truly feel worrying about such non sense is a wasted emotion.  I think we can be so hard on ourselves when we are a Mom with MS aren’t we?  It’s only human that we want to do more for our children but knowing that we just can’t keep up like some other supermom’s out there and that’s ok.  It does not make us any less of a mom.                      

Be Kind to Yourself

There will always be times when it’s hard to remember your strengths.

These are the times when you need to give yourself special attention.

Be kind to yourself… Kindness nurtures and gives hope to growing dreams.

Respect yourself… Listen to your needs, and treat yourself as you would to a friend.

Encourage yourself… Remember what you truly want, and fight for it as you would for your life.

Appreciate yourself… Don’t take for granted the qualities that make you unique.

Focus yourself… It is with discipline and motivation that you will move towards your goals.

Be giving towards yourself… In that way, your strength will thrive, and you’ll be realizing your goals a day at a time

                                               ~ Angelfire

Kind regards,

Michelle

 

Are you an Artist? MSAA Accepting Submissions!

In my life, the most effective way for me to deal with a situation has been to create art. I consider it to be a form of meditation and take part in it whenever I can, and luckily for me when I was diagnosed and in college I had ample time to so while sitting in class. Many times for me this has been drawing in my sketchbook while in class or listening to a lecture and also when I have what I need (time, space, paint, canvas) I love to paint as well. I have often seen the opportunities to submit art for various MS showcases too late which is why I wanted to share this with any of you that might be interested!! I just got this email today from MSAA:

Eligibility:

  • To enter, you must have a diagnosis of multiple sclerosis and provide a copy of a doctor’s verification of your diagnosis.
  • Participants must be 18 years of age or older as of the date of entry.
  • Your submission is not complete until we have received your signed Release Form. This can be completed online below, or printed and mailed to:
    MSAA Art Showcase, Attn: Angel Serrano, 375 Kings Highway North, Cherry Hill, NJ 08034 before the deadline.

The Art Showcase will first appear on MSAA’s website during March 2016 in recognition of MS Awareness Month. Select pieces will be highlighted throughout the year on our website and in the 2017 MS Ability Calendar.

Submissions for both Art Showcases will be accepted between October 15 and December 18, 2015. 

** Please read through all contest rules before submitting your work.**

More information is available at the MSAA’s Annual Art Showcase Call for Submissions Page.

Accommodation you ask? Why that’s only for special cases.

I have been wanting to write this post for some time, but in all honesty this was such an anxiety causing problem for me all summer that I only feel ok now to share my story. The short and long: I needed to seek accommodation at my last place of employment due to my MS and never in a thousand years could I have imagined how it went. I am proud that I managed to walk away from this mess with my head held high, despite wanting to further fight this, but what is the fight really worth? It came to a point that I realized that I would not want to work for an employer that discriminates against their staff. When I first got diagnosed with MS I heard horror stories of people being discriminated by their employers and I thought who on earth would be that awful?! It was a real shocker to find myself now at the center of one of those stories.

In March I had a routine MRI and two weeks before I was to return to work I went to see my neurologist to get the results and have a check up post baby. Since having my son I had really hard days riddled with pain and weakness, some days I felt like I couldn’t even hold him as I was not strong enough. I write this with tears on my face, as no mother wants to feel like she is too weak to hold her child.

When I went to see my Neurologist I told her of the pain, and I broke down as I was worried to hear that this could indeed be my MS being active. I expressed to her how terrible I had been feeling and told her I was not sure if what I was feeling was post partum changes in my body or MS, or a combo of both. After examining me she confirmed that it was indeed my MS that was to blame. She then showed me the results of my MRI, which was not that great. I had new lesions and she was worried about the progression of the disease in my body based on the symptoms I had described. She suggested that I ask my work for a few more weeks off to figure out what would be best next steps for me and she suggested that if I decided to return to work that I ask them for an accommodated work schedule.

I loved my job and I had always intended to return to work. I drove home with tears streaming down my face the entire way, scared of what could be brewing in my body, worried about my job security and sad that as a new mother I had this MS jerk in the way of me enjoying my son the way I wanted to. That same evening I tried to pull it together to call my supervisors to discuss my options. I had always had a good relationship with my place of work and was a good employee so I didn’t think there would be a problem. He was not there so I left a message letting him know that I needed to talk to him ASAP about my health and how it might affect my return to work, I followed up with an email. Almost nine days later I still hadn’t heard back, sorry but that’s just rude. I get that people are busy but when an employee leaves a message saying it’s health related, there should be some urgency to your repsonse. I called and left another email, and the reply I finally got was that he was too busy and the acting supervisor would call me.

When I finally spoke to the acting supervisor and explained the situation, I let her know that I wanted to return to work but I would like to see if I could seek accommodation to work from home two days a week (I worked four days a week) her answer was and I quote “I am not sure as we usually only reserve the right to work from home for special cases.” UMMMMM SPECIAL CASES? How special is special because I am pretty sure that a letter from a neurologist is pretty special!

I was so upset and we ended the call with nothing solved. My neurologist had connected me with a Social Worker at the MS clinic to help advocate on my behalf, and when she called to speak to my acting supervisor she too was told the same thing, that working from home was for ‘special cases’ and she offered this suggestion: I quit my job and come back as an auxiliary employee and work casually at the front desk. Apparently this would me flexibility to work when I felt well. UMMMM WTF! I could not believe my ears when my social worker told me this. So let me get this straight: leave my job of almost 8 years, go to a role four pay scales less than what I earned, loose my benefits and all job security and work on call?! Not to mention what about my contributions related to my current role being valued? Work on call? How on earth would I get childcare last minute? My Social Worker let me know that they were violating the Human Rights Code (Duty to Accommodate) and at that point suggested I file a formal complaint.

By this point we were already two months in and nothing was decided and I kept asking for my sick pay, which they would not answer my request for, not even to let me know if I had access to any. Finally I got my Union involved who also confirmed there was a violation based on the Human Rights Code and they wrote my employer a letter telling them I was entitled to my sick pay (I had 160 hours banked!) and reminded them that they had a duty to accommodate. I would like to thank my CUPE 15 representative, had it not been for him I am not sure I would have received my sick pay.

The battle went on and truthfully I began to put my head in the sand. I felt so hurt that I was being discriminated against as a person living with a disability and chronic illness. I decided to seek legal advice who confirmed that my employer had acted unjustly and that I could put in a complaint with the Human Rights Commission and even go after my employer for lost wages and the discrimination that they displayed. They also told me it could be a long battle and for me to think about the energy I had to take this further. My health was suffering, I was riddled with anxiety and I just wanted to end this all.

Not only was I dealing with the results of the MRI at the back of my mind, but all this too now. To add salt to the wound one of my fellow employee’s, who I called a friend, called me one day and told me that it appeared at work that I was ‘milking it.’ That‘s a pretty skinny cow because I was not getting a penny! I was shocked he would even suggest such a thing. Not to mention how would he have heard anything as I had only spoke to the acting supervisor.

My lawyer helped me write a letter detailing all that happened in which was sent to upper management. Two weeks passed and not one of the four I sent it to responded. I continued to feel disrespected by my employer, and question if I really wanted to spend time away from my child in a place like that? After much thought I finally decided to hand in my resignation, with yet another letter letting them know why I was leaving; I had been discriminated against as a person with MS in need of accommodation and did not want to work for an employer that had no time for their employee’s. I encouraged them to review their hiring practices when putting people in supervisor positions and that they be trained on employee rights and the duty to accommodate. I suggested that staff and management engage in sensitivity training and that I hoped no other employee would have to face the rudeness and discrimination I had to.

There are many more ugly details to this story that make it go from bad to worse but the important details have been stated. You must be thinking how can there be more, right? Like the Acting Manager gossiping at a dinner party about wanting to get my fired to her friend in front of someone that she had no clue knew me, using my first and last name. Smooth move there Mrs. Manager, smooth move. I have left names out on purpose when writing this post as my goal is not to point fingers at any specific person or the organization; if you really want to know who these people are I am sure a quick visit to LinkedIN will help answer those questions for you. Upper Management did eventually tell me (three weeks ago) that they were looking into this issue but by that time it was just two late (this all started in May!) If they had a solution, by that point I was no longer interested. I write this to close the chapter in the pain this caused me, to share with others that this still happens and let people know we have rights! Not only was I discriminated against as someone with a disability, but also as a woman returning off her maternity leave, and this was also stated by my Union rep and my lawyer. I made some mistakes along the way as I was not thinking clearly, mostly forgetting to follow up with emails and try and get as much as possible in writing. I hope my tips below will help others should they ever be in this awful position.

A few tips if you ever find yourself in this situation:

  • Accommodation is a legal right that all employers are obligated to fulfill. PERIOD.
  • If you are part of a Union go to them right away! They are helpful.
  • Write everything down and keep a folder of all emails (luckily I did this).
  • Send follow up emails after phone calls.
  • Know that you have rights and the employer is legally bound to accommodate you based on the Employment Law Act and the Human Rights Code.
  • Get a lawyer! Even if to settle your mind, get some feedback and help with the support you might need during this time. I am extremely grateful to the legal advice I was given and the support they offered me.
  • Don’t feel bad to send a letter letting people know that they are wrong. You have the right to express yourself and hold people accountable for their actions.

Lastly I want to say thank you, to anyone that might read this that I worked with (both staff and volunteers and board members) for the great times we had together. I enjoyed working with you all for the last 7.5 years and I left with a heavy heart, not having the chance to say a proper goodbye. My amazing volunteer team gave me the energy to come to work each day, leaving me with fun stories to tell and a big smile on my face daily. The generosity these volunteers showed as active members in their community always warmed my heart. I learned so much from everyone, built friendships and will forever remember the time spent with you all. I am grateful for the opportunities I was given and the chance to work with a great staff team and amazing group of volunteers and have the chance to learn so much about the arts. I wish you all the best and hope I run into you in the future.

Are any of us really ready for this?

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No one can prepare you for the difficult and/or awkward questions that your children may have about your MS.  I have had the MS diagnosis before I had children so they have grown up with this and not known me any other way but many of you have been diagnosed after and both scenarios have their own sets of challenges. I was still afraid for this day to come and dreaded the tough questions but it already has already happened in my household.

My children have asked

  • “Mommy will you die?”
  • “Mommy will you always have MS?”
  • “How did you get MS Mommy?”
My best advice is to be honest but to keep the facts age appropriate when you are talking to your children.  My children are young so I didn’t want to scare them. I was worried about telling them too much or not saying enough. I just trusted my gut instinct when doing this because no one knows my children better than me right? I did some researching on the internet for some helpful advice so I was prepared beforehand but as best prepared as you try when it comes to children and asking questions expect the unexpected. Are any of us really ready for this?
I just typed this topic into the search engine and pages of websites came up but here are a few example
Top three traps to avoid I would suggest are
  1. Avoid using medical terms they will have no clue what they are and it just confuses them
  2. That MS is NOT contagious and they can not get it by kissing or hugging you
  3. There are researchers all over the world that are searching for a cure everyday
Whenever I have had to explain anything important to my children I try to end whatever conversation we are having with a positive one so that they are not scared or worried when we are done talking. I reassure them that we take our lives one day at a time and enjoy it as best we can. We don’t waste our time or energy worrying about “what ifs” in the future. I sympathize with you if you are going through this right now because when it comes to our babies we want to shelter them from anything scary.
Do those of you who have been in this situation before have any advice for our Moms with MS family? Please feel free to make comments under my blog I would really like to know how others have handled this.
Regards,
Michelle