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It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Tuesday, March 1, 2016

The Letter to my Family About MS . . .10 Years Ago

I live pretty far away from my closest relatives, not counting my kids and Dave (oh, but not discounting them either!)  It's strange how differently we each "tell" people about our MS diagnosis.  I chose email.  Here's what I said when I was diagnosed in 2006, almost 10 years ago to the date. . .

Dear Family,

I wish that I could be with you in person to tell you this news.  And I regret that this comes in email rather than by phone call—I have reasons for using this method to inform everyone and I will tell you why in just a minute.  I’ll just get to it:  I have MS (Multiple Sclerosis).  We got the results yesterday confirmed.  It is in my spine as well as in my brain...and it sounds a lot worse than it actually is.

The reason why I am sending this out to you in this manner is because I don’t think I can handle any overreacting.  This is not to say that anyone would, but I have to avoid any extra stress on this one.  What I really need to ask for is support in ways that are helpful and this is the best way that I could think of asking without getting too emotional.

As you can imagine, this news has been upsetting for me and I am hopeful that you can all help me out by easing into this with me.  I am going to ask that everyone become a little more informed about the disease *BEFORE* you talk with me about it.  I can start you out by saying that this is *NOT* a life threatening disease.  It IS life altering and Dave and I are doing our best here to come to terms with that. 

The other thing is that drugs are available to help to slow the progression of the disease enabling people with MS to live long and relatively regular lives.  These drugs are taken intravenously and this will continue for the length of my life or until a cure is found or a different type of treatment is developed (everything that I have read says that they are hopeful to develop a pill soon).  There are two different types of drugs.  One is intramuscular and is taken once a week but with a long needle.  The other is subcutaneous (like a diabetic shot) and is taken once a day.  I have not decided between the two because I will not be able to start taking the drugs until after I am done breast feeding the girls and after my spinal tap (both should happen in August). So, I have time to think about it.

There’s lots of information available—I am only now starting to learn as well.  Here’s a place where you can read more about this disease:

So, there it is.  I don’t know what else to say.  Hopefully we can all get through this together.  Thanks for reading and for taking the time to find out more about it.  My doctor said yesterday that often the hardest thing about the disease is living with the diagnosis.  It is my hope that we can help each other to come to terms with this together.



. . . Less than a decade ago, the options for treatment were what I described above.  Now, not only are there many more choices (including a pill, a patch, crazy bee sting therapy!) but there is also a vast number of people diagnosed who are not on disease modifying medications at all.  Instead, they have altered their lifestyles, activity levels, diets and stress management; I am one of these.  I did take injections for four year and they made me very sick.  When I was taken off of the drugs, I ran a half marathon and I have been running more and more since.

Ten years ago very few blogs existed, let alone those on personal experiences of MS.  Now, there are blogs, books, movies, websites, photo collections, stories, all evidence that a large number of us diagnosed with this disease are thriving, living well, dispelling the old ideas about this illness. 

There are also more athletes with MS.  I am one of them.

A cure is on the horizon.