Hey Copaxone, LJBF*

*Let’s Just Be Friends

This is a hard letter for me to write. We’ve been together for 15 years and it’s been terrific. No, terrific isn’t enough. In fact, no words can define what we’ve had together. You’ve given me so much and asked for so little. It’s hard to imagine what my life would have been had I not met you. I admit, when we were first introduced I was scared. I hadn’t been with anyone else like you before. All the other meds were for individual symptoms and when I had an attack…well you know who I ran to – Steroid. Although that was good for a quick high (and I’ll never forget the dinners we ate together – OMG, beyond words), I was always left damaged. The more I ran back, the more damage was done. I knew I couldn’t keep doing this to myself, but there were no other options. And then BetaSeron came to town. I tried to get a date, but everyone wanted a piece. Ultimately the calendar was filled, and we couldn’t agree on a time to meet. Every day was booked until like, 10 months from my first phone call. Forget that! I’m not waiting around just because they said this new one was the only one that could help me.  And those side effects – oof… flu like symptoms? Liver damage? Screw that! I’ll go back to Steroids for that kind of abuse – at least I know what to expect!

But then you came along, all cute with your pre-FDA-approval name, Cop-1.  Nobody knew much about you then, but the gossip was good. And I felt special getting to know you before the rest of the world.  But don’t get me wrong, it wasn’t all wine and roses at first. You were different than anyone I had known before. On our first date you had a sharpness about you that was scary, even painful. But it didn’t take long for me to get over my phobias and just go with it. And I’ll be honest here Copaxone, you were my first in many ways. We shared some very special times together, ones I will never forget.

Do you remember that time when I walked so far my feet hurt? We’d only been together for a few months, and for the first time in years my feet actually hurt! With you I could walk far enough to feel pain.  Oh that is surely when I fell deeply in love with you. And it was just the beginning of what you did for me. I had so much energy because of you. Remember those walk-a-thons we did? We had a team with shirts baring your name- Copaxone Walkers. And that’s not all you did for me. You changed my life. Years after we got together – I had a baby (of course you know that!), got a master’s degree and could even commute to NYC 5 days a week. I had so much energy with you – those subway steps couldn’t slow me down. You were there for me in so many undefinable ways and our relationship was so comfortable. Sometimes I got sick of the daily sticking points, but it was always worth the trade-off.  I really shined in ways I couldn’t have without you. And that is why it is so hard to say that our relationship must end. I can’t even believe it…as I type these words. But the time has come to move on to something new. Yes, the salad days are behind us – and I have new needs now. You’ve done all you can for me, and I must start over. You are a tough act to follow Copaxone and I’m crossing my fingers that I’ll get over you. Who knows, I may find healthy distraction in my next affair. But don’t feel badly, I will never forget all we had together.

I’m starting Rebif tomorrow and like the end of one relationship and the start of another – I’m afraid, though hopeful.  I’ve done some research, but not too much. I’ve asked for shared experiences…and got more than I wanted. The reality is that everyone responds differently to any drug. It may work, it may not. It may cause side-effects, it may not. It may affect my liver, it may not. So as usual in my uncertain future with MS, I forge ahead.  I’m hoping, maybe even praying, that this relationship will be the one. The one who will love me for who I am on the inside – scars and all.

So Rebif, if you are listening, go easy on me and maybe we’ll have some good times together. I’ve heard great rumors about you – and I’d like to think we can share the same magic.

21 thoughts on “Hey Copaxone, LJBF*

  1. Joanna says:

    Good luck with the new medication, Amy. We miss you at Tisch.

  2. Connie Nichols says:

    Amy, that was a wonderful essay and a fitting tribute to the drug that served you so well for so long. I sincerely hope that Rebif is ALL that you hope it will be, and that you are once again able to be doing all the things you love to do.

    You have fought an amazing battle with grace, dignity, and humor……keep it up.

    Connie

    • aglol says:

      Thank you Connie~ Your support has been so meaningful to me. And Madeline starts circus camp in two weeks! Thanks for that link.. it was great fun. 😉

  3. Donna says:

    Absolutely those drugs affect everyone different, Copaxone made me so much worse! Why are you switching, since you’ve been doing so well?

    • aglol says:

      Thanks for the perspective Donna. Copaxone just isn’t doing the trick anymore. With the increased “activity” going on in my brain.. my doc and I determined a change might do me good. Thanks for your comment and readership! Best, Amy

  4. Lisa Emrich says:

    This is a great piece, Amy!! I hope that Rebif does the trick for you.

    After I had to do steroids AGAIN last week, I thought for sure I’d have to switch away from Copaxone. But the MRI done last Sunday shows that things are stable. Hm? So now we’re talking about adding Rituxan to the mix. Just have to get my rheumy’s input now.

    Hope you’re doing well and have recovered from your recent relapse.

    Take care,
    Lisa

  5. Nadja Tizer says:

    Thanks for this. Copaxone and I are about to begin our relationship. I hope to find it as kind a companion as you did.

  6. Ken Frank says:

    Great writing, Amy! I wish you wondrous success with all you may expect from Rebif. May it be more wonderful and helpful than Copaxone! I also send you very loving and supportive energies from Judy and me… and hugs!!!

  7. Vicki P. says:

    Such a funny take on such a life-altering subject!
    To think, I brought in the box from the front porch this evening and handed you a new “paramour.” I lift a cup of tea to you and Rebif and toast you…may this be the “match made in heaven.”

  8. Norm says:

    An allegorical tale that resonates — your reaction and experience with your new med should be be as effective as your writing.

    We’re all with you!!

    Norm

  9. Sonya says:

    Good Luck with your new drug Amy! As always, love your writing.

  10. Jill Weiss says:

    Such a sweet and creative piece, Amy. I remember walking on the Copaxone team. Wishing you a successful relationship with your new friend, Rebif. May it serve you WELL!

  11. Lanette says:

    To hear of the wonderful relationship you had with Copaxone for so long gives me hope that I too will have success. I really enjoy your writing style. Excellent blog you have here!

  12. How are things going on Rebif now, a few months into it?

    Jan.

    • aglol says:

      Things are going fine. No real side effects~ As far as improved and improved experience with MS? Well, time will certainly tell. In the mean time I’m enjoying my reduced shot schedule- feels like a vacation.
      Thanks for commenting Jan!
      ~Amy

  13. mseds says:

    Hi Amy,

    I just stumbled upon your site. This is so well written! I’m in the same boat as you. Copaxone isn’t doing the trick for me and I’m in the process of switching to Rebif. I’m glad to hear it was an okay change for you. I have high hopes for Rebif!

    Ivy

    • aglol says:

      hi Ivy,
      Nice to virtually meet you! I’m flattered that you are enjoying my writing and glad relating to the content. How is Rebif treating you? Hope you’ll visit again!
      ag

      • mseds says:

        I’ve not yet started, but hope to within the next month. My neurologist and I just finalized the decision to switch, so I imagine I am with Copaxone for another month or so until I’m up and running with Rebif. I wish it was sooner. It’s hard to stick with Copaxone when I know it’s not working for me. It’s tempting to stop it completely and just wait for Rebif to arrive at my door, but there seems to be some logic arguing against that approach.

        Did you find the transition to be an easy one? I must say that I am looking forward to less frequent shots, but am not thrilled about the rest of it. I just hope this works!

  14. Elizabeth says:

    Have you looked into:
    http://www.lowdosenaltrexone.org/index.htm

    It may change your life.

    Best and God Bless

  15. […] You are shaking your proverbial head, clucking your proverbial tongue saying, I knew after that LJBF (let’s just be friends) letter that you would forget about me. But please, blog, let me […]

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