Sunday, March 22, 2009

Welcome New MS Bloggers to the Community

Just My Thoughts: A Journey through Life with Multiple Sclerosis is written by Mis.

Well, here in Michigan spring has finally sprung. All the nasty snow mounds that look more like dirt from a long winter of road grime are finally gone, the winter jackets are left in the closet, and we've even opened the windows a few times. It's funny really. I look at this change in seasons, and I can't help but see paralells to my own life.

In so many ways, I feel like I'm in my 'spring' of this journey I'm on living with MS. This winter was really, really bad. And I'm not talking the frigid temps and snow, either. I'm talking about myself. After years of mystery illnesses, people even thinking I was a bit nuts, and finally being diagnosed with MS in October... I sunk. I didn't just sink a little and bob around, I mean I went down like the Titanic. I have spent the better part of the last 6 months in quite the depression, not to mention in a state of constant fear. Fear of the unknown, fear of my own body revolting against me, fear of losing all that I love and hold dear because of this nasty disease. Every morning, I'd wake up and do a sort of 'body inventory'. Can I see? Ok wiggle your toes... can I stand? How's the arm, think ya have any small motor skills today? Hmm... I think that's some nerve pain I'm already feeling in that damn right leg. Quick do math- what's 8+5? Is your brain foggy? Think ya can speak without sounding like an idiot?

This...was me. And of course, some part of my body inventory would always fail the test, and I'd curl right back up and think to myself "maybe tomorrow I'll feel normal". Guess what? This IS normal. The normal I once I knew so long ago simply doesn't exist anymore. It's gone. Buh-bye. I finally realized I am never, ever going to wake up and feel 'normal' by healthy standards again. This sunk me into an even deeper fear and depression. I thought my life was over.
Be sure to read the remainder of this post.

Aaron started the blog, What I Do For My Children, to share his approach to Multiple Sclerosis and the work he does for the benefit of my children

Advice for the newly diagnosed
I remember sitting in my car in 1996 crying. I had just walked out of the doctors office and he'd given me the news that I had MS. I'd asked him a few questions and then was strangely blank. He asked me if I had more questions, as I think he had a lot more he wanted to say to me, but I said "no, probably tomorrow I'll have a lot, but not right now." I walked out of his office and sat in my car for 10 minutes and cried.

I went home and called my best friend and told him the news. He asked if I'd had dinner, and when I said no, he told me he'd be by in a few minutes with some pizza. I called my parents and had a very short conversation with them. I told them the news, that my friend was coming over, and that we'd talk more tomorrow, but I just needed to digest the news on my own for a moment. I called my other best friend and he said he'd be by with some beer. I called my third best friend. He asked if I wanted pizza, then beer, and finally settled on bringing by some videos.

We watched comedies, talked, drank beer, ate, and laughed for a long time that night. It was just what I needed: to be reminded that even if I was sick with a disease about which none of us had the slightest understanding or knowledge, I was still loved. The next day, I started dealing with what had changed.

It took me awhile to realize it, but actually very little had changed for me. I was still having this strange problem with my eyes, only now it had a name. But other than that, things were not that different. The change was in those around me.
Be sure to read the complete post here.

Terri jumped into the blogging world at Sanity is Over-Rated.

This is my very first blog here. I found it quite by accident. I was reading a post in a forum I frequent and wanted to respond to a blog..I ask in advance that you be patient with anything that doesn't make sense. I have a lovely thing called *cog fog* which often times has me typing grammatically incorrect sentences. I apologize in advance. I am 49 years old and up until 2006 had a pretty normal life. In April 0f 2006 my world changed forever. I was diagnosed with MS.

I believe I had the nasty disease earlier though. I felt fine until about 2000, when I first moved to Pa. I started to feel very tired. I assumed it was because I was approaching 40, working full time with two children. I noticed when I went to the store that every time I would get anything from the bottom shelf I would get very dizzy upon getting up. Again I brushed it off. In 2004 my eyesight took a turn. The eye Doctor said I was getting older, sigh. I went from no glasses to bifocals. One day I woke up and my eyes were blood red. I scared one of my students who said, "Mrs. M your eyes are bleeding." That time the DR. said it was dry eye syndrome and that he suspected I had some immune issue. He wrote to my family physician but that was the end of it.

Then in early in 2006 I began to spill things a little bit more than usual. Since I have always been a bit of a klutz, I attributed it to that. March rolled around and I fell a few times. I never thought anything of it. Then one day I started walking into things on my left side. I woke up one morning and had no use of my hands. I tried to get up and could not. My whole left side had no feeling. I went to my pcp right away and he ordered an MRI. The next day he called and asked if my husband and I could come in asap. I knew this wasn't good news. He showed us the pictures of my brain and said it appeared I had a tumor in the right hemisphere of my brain. Of course it had to be in a place that was not easily reached, a *high price real estate area* as he called it. He scheduled me an appointment with a neurosurgeon for later that week. I never made it.

the next day I was home. I collapsed on the floor and laid there for hours until my husband made it home from work. I will spare you the details, but it was a rather unpleasant physical sight . John came home and took me to a hospital in Philadelphia. They admitted me and told me that they couldn't address the brain issue because I also had a problem with my heart. Apparently I had something called A-fib. I had no idea. I was in the hospital for 12 days. First in ICU, then in Cardiac care, and finally in Neurology. They moved me there after they did some procedure to re-boot my heart. I had tons of tests, including a biopsy of my brain. I was released on Mothers Day of 2006. After 6 weeks of being told that my results showed abnormalities they couldn't diagnose, they sent samples to other universities. Finally I was told that I did not have cancer, but I had a lesion of dmylination which was Multiple Sclerosis. It was pressing on the nerves which control my left side.

Now it is 2009. I am still mobile, but have lost 40% use of my left side. I try my best. Some days are harder than others. Everyone who has Multiple Sclerosis is different. For me, fatigue is a huge symptom. I wake up feeling like I have been up for 2 days. I walk with a bit of a limp and if you didn't know me you might think I have had a little too much to drink.

Most days I have aching in my legs. My sight has deteriorated a lot so I seldom drive at night, but I consider myself lucky because a lot of people with MS don't drive at all. I take a lot of medicine daily for all of this. My favorite is my daily ritual of Copaxone. It is a shot which I administer each night. Oh the lumps!

I 'm not sure what (if anything) I hope to accomplish with this blog. I figure even if one person gets a little better understanding of Multiple Sclerosis, than it's something. Thanks for taking the time to read this.


  1. Hi Lisa and Welcome to all of the new bloggers to the community.
    I know that they will all be welcomed with open arms as I was just a few short months ago after I started my MS blog.
    It's funny, when I started my first blog about my everyday ramblings as a stay at home mom, it took me atleast a year or more to get one comment and even longer to get the following of readers that I have now.
    I just assumed that the same would happen when I started my new blog that deals with my life with MS but suddenly I felt surrounded by a community of other bloggers who made me feel welcome and made me reaslize that I'm not alone in this.
    Lisa, I think you were my first commenter and I can't thank you enough for introducing me into this community.
    And I would love it if you used parts of both of my posts about the Montel/Oprah thing. I'm interested to hear what others have to say about it as well.

  2. Tracy,

    I'm so glad that the community did welcome and surround you. That makes me so very happy. The support which is freely given is wonderful.

    So glad that I found your blog. Don't remember how I found it, maybe you left a comment on somebody's blog and I checked your profile. But however it happened, I'm glad to have met you.