Multiple Sclerosis Anniversary

Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.

MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.

From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.

My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.

While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.

I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?

People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.

The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.

Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.

I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.

I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.

Explaining Multiple Sclerosis to Children

If you’ve been reading my blog for a bit then you know I have two sons, 13 and 7. I was officially diagnosed with MS when when they were 8 and 2 but I had been experiencing issues for so much longer.

How do you go about talking to your kids about MS, the future and changes that may happen? There’s no protocol to follow about informing your children about this disease. You want to prepare them but not scare them. You need them to know certain things (depending on what your own MS looks like) but also not make it look bleak.

For me, I have always told my kids up front what is what, I realized later that slowly easing into it would have probably been better. I like to have all of the information and possible outcomes and I assume everyone else does too. I didn’t think that through though because at the time I was in a whirlwind of information, my new reality and trying to figure out what course I was going to take. I was in crisis management mode.

My oldest was worried, he is less so now thankfully, and as my youngest grew I bought books on MS written for kids. It helped, there were words and pictures in front of them discussing the science of it and what it looks like for different people.

I am NOT being paid for this information, I just want other people with MS to know what I have found helpful.

  1. Sometimes, M.S. is yucky by Kimberly Harrold, this book is short and goes over the basics with illustrations that children can understand. In the back of the book there is a section for adults to read through prior to reading it to a child so they can know kind of what to expect from kids and questions and the best way to discuss it. (This book could be read to younger children, maybe even 3 years and kids you might feel will be overwhelmed with information. The illustrations in this book is a mom and child, medical people and does have a mom in a wheelchair)
  2. My Mommy Has Multiple Sclerosis (Gail’s Story) by Rebecca Clary, this book’s illustrations are animals, the mom is a giraffe and an elephant doctor. This book also discusses symptoms that may come and go and what it looks like. The author is a mom who has M.S. and in the back there is a kid friendly glossary.
  3. The Electrifying Story of Multiple Sclerosis by Vanita Oelschlager, this book is for older kids as it goes more in depth of the science and loads of different symptoms that are not addressed in the previous two. I would say 9 would be a good age for this book but my 7 year old has read it on his own and I previously read it to him, but he’s like me and likes all the information possible and asks lots of questions. This book is detailed but also simple enough that your average reader can understand. I am not even sure if this book was aimed at children, but my kids liked it for the details. I plan on using this book when I discuss invisible illnesses with my youngest cub scout den.
  4. MS Children’s Book by Zac Raasch, this book discusses MS as though it’s a monster. (MonSter), I know this is a way that some people address their MS and this would be good for those people. The book is easy to read and goes over the basics in a child friendly way.

All four of these books are good, my children found them helpful. I would say if the child is over 9 or 10 though just go to the third book as the other three may seem to young for them.

Have you found anything to be helpful when discussing this with kids? I am always open to new ideas.

 

The Difference Between Friend, Good Friend and Great Friend

I never thought of friendships as having levels. I have friends, two best friends (based on length of friendship and history) and acquaintances.

When searching online, there are only differences between “friends” and “best friends”. Based on what I read, I disagree with those. It discusses honesty, having your back, supporting you among other things, it also says if your best friends you talk every day. While I consider my husband one of my two best friends, and I do talk to him every day, my other best friend I do not talk to every day but I have known her for more than 20 years and I know that it will always be an easy conversation filled with love and support.

If you are my friend, I will do what I can when I can to support you and be there for you when you need me. To me, friendship is being honest, caring, helping and perhaps even doing things that make you happy even though there may be physical and mental consequences for me after because of my Multiple Sclerosis.

There is no difference in the type of friend I am going to be to you, I will be your friend, the only way I know how. There will not be any difference between a friend of a year and a friend of 5 years, there will be no difference. You will not get a regular friend one day and 6 months later a good friend and perhaps two years later a great friend.

I am not religious but there is one thing I follow, and they learn it in girl scouts too; treat people how you want to be treated. It’s simple, if you want your friends to be there for you, you start by being there for them. I am here for my friends, I will support and assist you whenever I can. It could be as simple as taking your kid to school for you because you have scheduling issues or being in your wedding.

No relationship can last if one person is constantly giving and not getting anything back. I do not mean material items, I don’t mean same level of helping either. If you need me to grab your kids from school because you are having a bad day that doesn’t mean you have to do the same thing for me. It could mean that when I want to talk or get an opinion you are there for me, being a friend.

It’s odd, I was told I was a “great friend” by a couple of people recently because I was in my dear friend’s wedding even though there were consequences for me after. Yes, I had to drive, yes, I had to talk to a lot of people, yes, I stood in the heat, yes she is my friend. That’s what friends do. I made adjustments to how much time I spent with people, I skipped the events the day before so I could be there for her. You know what, she appreciated it and she’s only going to have one wedding. Someone didn’t go to my wedding for a reason less than it having fairly significant impact on their person, when I look at my wedding photos I remember THAT, and they regretted it later.

So while my brain is tired, my body aches even two days later, I cleared my week following the wedding to properly rest to regain the limited mobility and brain power I had before. That does not make me a great friend, that makes me the kind of friend I think others should be. It didn’t even occur to me to not be there for her, it was more of trying to determine how much I could be there for her.

So here’s your heads up, if you are friends with me, you are going to get the whole me. There’s no difference in time, if I count you among the few friends I have I will be there for you whenever possible and however I can be. I hope you will be there for me too.

Do you think there are differences? Should there be?