Today I was diagnosed with MS

IMG_0466Well ok, not really, but in some ways it feels like it.  Even though I have had MS since 2007,  I have never spent time on-line looking for anything regarding the disease.  Not information, not symptoms, not medicine and certainly not others that have MS (or MS-BFFs as my daughter would call them.)  I think that this may be in part because when I was first diagnosed, I DID join a “support group” of sorts.   This lasted for only about 2 months; I found everything and everyone there SO depressing and morose (they were all Debbie & Dennis Downers) that I ran from there and never looked back.  I am realizing now, that was an unfortunate way to be “introduced” into the world of Multiple Sclerosis or at least to others that have the disease.

Once I started reading and reaching out to other MSers and finding other MS bloggers I learned something.  There are some pretty fucking cool people with the disease out there!  No REALLY!  It’s not that I thought that I was the ONLY person in the ENTIRE world that had an upbeat and positive attitude about having MS, or that I was the only one that could string a few sentences together to write about it.   I just didn’t think that they would be “out there” (on the internet) writing about it.  I assumed (incorrectly) that they were too busy sky-diving and climbing mountains and conquering the world to have an on-line presence and that only the Debbies & Dennis’s were around…. I don’t know.

The point is: I didn’t know and had NO IDEA!!!!

Now that I DO know, I have been reading and reading and reading and chatting and chatting and chatting.  I told Shawn the other day, I am overwhelmed to think that all this time, there have been people out there that know what it is like, what it feels like, and how it fucks with your life.  Over and over again I find myself reading a post or someone’s comment on facebook and I freeze, thinking…


It is SO super awesome to read about other people’s take on the humor they see in this crap.   It is also humbling to read a post from those same “positive” people, on a BAD day when the pain is so awful they can’t get out of bed or when they are  just so fucking frustrated because they had another fall.  Humbling because I know how hard that is; to let down your guard (I hide behind my humor) to admit to anyone that sometimes you have just had enough!  Game over – going home.

I have learned that putting these words out there, does not make us whiners or complainers, or weak.   It makes us real!  It also does not mean that we longer have a positive outlook,  because we may well find the good in having that melt-down, tomorrow (sometimes you have to wait a minute before the humor finds you.)  Discovering other people that write about the things that I live with, some how makes it more real for me.  Like some how, before,  if it was just me that had the burning pain in my legs, if it was just that has legs that go wonky and just don’t want to work or just me realizing  that once again, I am not going to make it to the bathroom in time in middle of the grocery store… well then maybe the doctors have been wrong this whole time and that eventually it will all go away, just stop.  Knowing that other people are “just like me” and reading about their lives made me realize…

I really DO have MS….damn it!

I am SO thankful that I started this blog.  I had always thought that when I did start writing, or published my book that it would be for others.  I have always wanted to be able to make others laugh and smile and to hopefully help them find the happiness and love in their own lives.  But I now understand that it is also for me; to help me continue to learn and to grow.  As I learn about other people’s lives and hear their stories I am growing to understand a bit more about this disease, to listen to my own, and to trust myself and what I am feeling and experiencing.

Tecfidera update:  Second day, going ok.  I did experience some neusea, but not the tingling sensation in my vajayjay that I had been hoping for.   No but really, nothing really to report, just certain I would NOT want to take it without food, at least for now.

4 Replies to “Today I was diagnosed with MS”

  1. I know what you mean about MS bloggers. I hate to generalise – clearly there are some good ones about – but oh goodness, there are a frightening number of people who seem to define their lives by their condition, and I find that incredibly sad. Sure, I blog about it because it’s unfortunately part of my life, but I’ll be damned if it is what defines me. I blogged before my diagnosis, and I blog now…. But I like to think there’s more to me – to everyone – than the condition! If you read my blog with Antony Hegarty from Antony and the Johnson’s singing voice (specifically on “hope there’s someone”) in mind, then I’ve failed. Apart from anything else, my singing voice is more like Johnny Cash…..
    I’m a skydiver and proud!

  2. I’m so glad you started your blog and found me. Blogging has been so great for me. I love it and I never would have started it if it wasn’t for MS!

    By the way let me know if you find any other “MS blogs” that you love.

    Also what state do you live in? I’m very active w/ the MS Society for my area and I LOVE it. I have met so many awesome people w/ MS (and w/o) and it has been a huge source of inspiration to me. I love volunteering and giving back too.

    1. Thanks Jodi, As I mentioned, in Seattle area. MS bloggers I am loving at the moment – top two would have to be (that is Chelsea up above here on comments) and (that might not be totally right but it is on my blogroll) and that is written by Mette in Denmark. I have had communication with ALL of the bloggers on my blogroll, as I select them because they strike me as someone that I would want to connect with:)

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