If it’s not broke, don’t fix it!

On October 4, 2017, I received the following in a letter from my neurologist:



After reading this the first thing I thought was

“DAMMIT” ! Stop trying to change my medication!

I have made my decision, I don’t want to change. It works for me!

My roommate overheard my exclamation, and immediately offered his unsolicited opinion “I don’t know why you’re taking a drug that you know will probably kill you.” Followed by, “Exercise more, eat better.”

This only served to make me more angry.  While for me anger is an excellent motivator, it is not a healthy place to stay.  So I decided to try to interpret the reasons behind my anger.

I have spent the last week in my head trying to sort that out.

Why did I get so angry?

Because I didn’t make my decision without weighing all my options.

Having MS means I have to adjust to changes all the time

  • changing my plans because I am too tired, or my legs won’t work, or the weather isn’t cooperating
  • selecting the type of clothing I am “allowed” to wear.  I have to wear easily removable bottoms because of my incontinence issues.  I don’t like pants because they aggravate the pins and needles feelings in my leg.  Most things don’t match the one pair of shoes I own that accommodates the AFO or orthotics I am supposed to wear.

This is working for me I don’t want to change it!  It makes me remember and feel that dark place I was in when I made the decision to start Tysabri.

As for now, the blood test will wait.  I have other goals to accomplish this week and have spent enough time being angry.  But YAH I walked a mile so far today and have a friend coming to push me for another walk.  Yah being active!

I think it would be healthy for me to work on letting go of some of those memories.  Writing really does help, whether you publish or not.  I am going to spend some more time this week writing about my decision to start and stay on Tysabri.  At the very least, putting it out there will free up some space in my head 🙂



One comment

  1. Oh Sweetie, I am sorry doctors tend to get in their mind what they think you should do and just stop listening. Not that it matters, it is your body, but do the doctors have a reason they want to switch you? Ocrevus seems to be the doctors new shiny toy, so they think it is the best. If you feel like the Tysabri is working for your body and you do not have new activity, leading to needing something stronger, stand you grounds and just explain you are not changing.
    Your roommate doesn’t have MS does he. Those words are the last thing you are supposed to say to a MS patient, eat better and exercise more. All that does is set of a bomb in our minds to fight the words! Take care my dear and if I can do anything for you, just let me know!!!

    Liked by 1 person

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