Thursday, January 05, 2012

My MS, Your MS

I know I have MS. And most people who know me (and some that don't) know that I have MS. It's not a secret. I tell anyone who asks and/or who I think would benefit from that knowledge. I participate in MS fundraising events, I have this blog, and I have an online identity as Lazy Julie in the MS community.

But you know what? MS is different for every single one of us. If you were to gather 100 people in a room, we would probably have 100 different stories of diagnosis and symptoms. So, it stands to reason that we will have different ways to treat our MS and to respond to the fact that we have MS.

Since MS is my disease, I do it my way. Currently, I'm doing it without prescription medication. As I've described here, I am now taking vitamin D, probiotics, have a gluten-free and lactose free diet, pray and meditate daily, and try to exercise every day (and most days, I succeed).That's me.

You, on the other hand, may take injectable, disease modifying drugs. You may take oral MS medication. You may get regular infusions of Tsysabri or solumedrol. You may take LDN. You may have had the CCSVI "Liberation" procedure. You may do none of those things. Or many. Or have your very own regiment. But you know what? It's YOUR disease and that's your choice.

You can and should do exactly what works for you and, as long as you don't try to convince me to do it your way, we're good.

I go to a Unitarian Universalist church. I didn't go to church for years. I didn't want to and I didn't need to. I had kids and that changed for me. So now I go. But you know what? I don't tell YOU to go. I am totally ok with any god, goddess, or whatever that you worship or if you believe in absolutely nothing. That is your choice and I'm ok with that. I would NEVER, EVER try to convince you to share my spiritual beliefs (in part, because they are kind of fluid). If you ask me what I believe or how I practice my particular brand of spirituality, I would be happy to tell you. I would not, however, enter a spiritual debate with you. In my opinion, spiritual beliefs or lack thereof, are a personal decision and it's absolutely none of my business, as long as your beliefs don't infringe on my freedoms or beliefs.

It's kind of the same thing with MS treatment. Tell me what you do, I will tell you what I do, but PLEASE let's respect our differences. We share a disease but not a personality.

Let's make a deal. Don't tell me that the doctors I trust are lying to me and I won't tell you the same. Don't tell me or anyone else that the drugs they are taking are poisoning them and I won't make negative comments about your treatment of choice. Don't call anyone a freak or a crazy person because they are taking part in controversial treatment and I won't either.

Do me a favor:  talk about yourself and your own experience. Don't lecture or harass. And, while I'm ranting, please don't tell me how I should change my Facebook status to show my support for people with MS.  I support MS causes in my own way and I update my Facebook status in my own way.You are not the boss of me or my MS.

As always, thanks for letting me share.


  1. Hi Julie

    I too have MS and I too am doing it my way, which is coincidentally very similar to yours!

    One thing I have not tried but have been hearing quite a bit about these days is vitiman D. Are you able to share a bit more on the benefits of this and how much one should take.

    Thanks in advance

  2. Thanks, Susan! My neurologist suggested I take 2000mg of Vitamin D per day. I guess, people with MS have a Vitamin D deficiency.

  3. Clap, clap, clap. Thank you for putting this into words. Fortunately, I don't get too many folks "educating" me on MS treatments. But it does still happen. Ask me what I do or have done and I will share, but otherwise it isn't up for debate.

    One thing I have figured out in relation to vitamin d defiency is that it wasn't until I started taking 10,000IU daily that my levels were brought up into the range my doctors desired. My body just doesn't seem to store it up. Don't know if it's helping my MS or depression, but I do know that I no longer have achy bones.

    Hope you're doing well. Btw, I enjoy reading your FB updates.