2 August 2010

Guest Post: Living with MS

Today I am featuring a guest post from new blog friend, Jodi from Jodi Bean's Blog. Jodi is an intelligent and beautiful social worker living with the autoimmune disease, multiple sclerosis (MS). Jodi's blog follows her journey living in Boston, MA.

I asked Jodi to write about her story and her passions. Here is what she shared.

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I don't live with a husband, or a friend, or even a dog - I live with MS. Most days MS makes a TERRIBLE roommate! I really never know what to expect. . .

Will I sleep okay or have insomnia?
Will I have numbness and tingling today?
Will I be so fatigued today that I won't be able to make it through the day?
Will I be in pain?
Will I feel depressed?
Will I have bladder and/or bowel issues?
Will I lose my balance today?
Will I experience dizziness today?
Will I have vision issues today?

These are the questions people living with MS have running through their heads each day. Personally I have experienced many of these symptoms in the almost two years since I was diagnosed with MS. I think the worst part of living with MS is the unknown. Most of us like some control in our lives and some of us even like a lot of control in our lives. Well when you have MS you don't have much control. New symptoms can come out of nowhere. You can literally be feeling fine one minute and not so fine the next. All you can do is control the way you react to the symptoms which is sometimes easier said than done.

But let me back up and introduce myself. My name is Jodi and I am a 33 year old woman living in Boston with MS since September 26, 2008. My diagnosis came out of nowhere and life has been filled with changes and surprises ever since.

This past April I decided to start my blog for a few reasons:

1. I want to connect to other people living with MS.
2. I want to educate and inform others about MS.
3. I hope to help others living with MS, especially newly diagnosed.

So far blogging has been a really positive experience. The hardest part is finding the time to blog. I work full time as a medical social worker and as earlier mentioned I often experience fatigue which makes blogging after work somewhat difficult. I'm really looking to grow my blog with more readers - both with MS and without. I enjoy reading other people's blog and I find this community very supportive. I've learned a lot from other MSers and I get a lot of good laughs reading some of my favorite blogs. I also think when you read my blog which is about a lot more than just life with MS you will see how good life can be. I have plenty of hard days but I make the most of the good days and cherish the healthy times!

Now that I've told you a little about me and why I blog, here are some basics about MS from The National MS Society website.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease. MS is an auto immune disease.

MS is not contagious.


MS affects all people different.


There is now treatments (injections) that have proven to be extremely effective in treating the symptoms and preventing the progression of the disease. At this time there are no oral medications for the treatment of MS.


MS can typically be diagnosed with a neurological exam and brain MRI.

So now that you’ve learned a little about MS the next time you meet someone with MS ask them how they are feeling! I think there are more MSers out there living in your neighborhood or working in your office that you don’t even know about.

If you would like to read more about my life living with MS (and a lot of other things) stop by my blog. Leave a comment and let me know you found me through Carly’s blog.

Carly, thanks so much for letting me be a guest poster!

A big thank you to Jodi for sharing her story here. Please make her feel welcome and say hello!

2 comments:

  1. Thanks for introducing me to this blog! My brother has been living with MS for almost 10 years, but doesn't like to talk about it very openly, so it's nice to hear someone speak about it so candidly.

    ReplyDelete
  2. My StepMIL is also living with MS and I have a hard time understanding the depth of it all. I'm excited to have been introduced to Jodi's blog here!

    ReplyDelete

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