Summer is here! And so is the heat!


And I say that because we have temps in the 90’s today. It is HOT. And for anyone with MS, you know that the heat is a pain in the you-know-what. So I am keeping myself into my air-conditioned fortress, only stepping outside if necessary. I guess I shouldn’t complain because in a few months we’ll be buried in snow. Depressing thought.

I had an interesting conversation the other day. I was @ my Doctor’s office for my monthly Tysabri infusion and seated next to me was a woman, probably a few years younger than my 38 years (OK maybe quite a few years younger). She seemed very nervous. She was there getting solumedrol for an MS flare. She was asking alot of questions about the side effects of the solumedrol (which there are many) and she just seemed to be scared. So I struck up a conversation. She was just diagnosed about a year ago, right about the time she and her husband were trying to have a baby. That went on hold while she dealt with the news that she had MS. In the last year she has had 2 flares and they are trying again to get pregnant. She had alot of questions about pregnancy, attacks, emotions, you name it. And I felt like I could help by talking to her. One of those “been there, done that” situations. Because I feel as if I have certainly been almost everywhere and done almost everything in terms of this disease.

But after she left, I was struck by how much she reminded me of me, 14 years ago. The questions, the uncertainty, the fear. I still have those feelings, but not so intense anymore. Am I getting used to having this illness? I don’t necessarily think I am getting used to it, I am just accepting it. I have it, I have to admit it, but I just live my life and go about my day. I am getting better about resting and trying to take care of myself. Maybe that is all part of acceptance. There are days when I am scared. Scared of the future, how will I live, survive, cope? And there are days when I can almost, not quite totally, but can almost forget I have MS.

Talking to her, I wanted to make her understand that a diagnosis isn’t a death sentence. It is more of a life-changing sentence. I told her all of the things I do: exercise, riding, etc. The need to be fit and active. Eating right (most of the time). Somedays putting yourself first. And it’s OK to have a pity-party once in a while. But only once in a while! You get to pick your path and you only get one chance. You can decide to live you life and see what is in the road ahead, or you can choose to sit out on the journey. The way I see it, we have already passed a huge hurdle when we were diagnosed. Now it is up to us to finish the trip, and hopefully enjoy some of the scenery.

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5 thoughts on “Summer is here! And so is the heat!

  1. I was only diagnosed in April but your last paragraph really sums it up for me. “Talking to her, I wanted to make her understand that a diagnosis isn’t a death sentence. It is more of a life-changing sentence. I told her all of the things I do: exercise, riding, etc. The need to be fit and active. Eating right (most of the time). Somedays putting yourself first. And it’s OK to have a pity-party once in a while. But only once in a while! You get to pick your path and you only get one chance. You can decide to live you life and see what is in the road ahead, or you can choose to sit out on the journey.”
    I couldn’t have said it better myself. This diagnosis has been difficult at times but overall, it has been a blessing and a chance to reevaluate the things that matter.

  2. Oh Keli, how wonderful that you were able to talk to that young lady and help calm some of her fears… truly, what goes around comes around. I’m so proud of you for not only helping her, but for reaching out to her as a patient advocate, and she will probably do the same for another person with MS who is scared.

    I wonder if her neurologist will place her on Tysabri once the Solu-Medrol has cleared her body. More and more neurologist are starting to use Tysabri as a first-line therapy for MS patients. If you think about it, the ABCRs have efficacies which range from 29% to 34% respectively for preventing further relapses/slowing the disease process down with horrible flulike side effects & injection site reactions, whereas Tysabri is 67% effective with only minimal to no side effects for most of the MS patients, has proven data showing an 83% reduction in the accumulation of new or enlarging lesions over two years, as well as 92% fewer lesions during Tysabri therapy after both one and two years.

    I sure hope that newly diagnosed MS patients are not being forced to wait until the other older generation drugs fail them and they have unnecessary lesions which are leaving permanent damage.

    Time Is Brain… I just finished my 23rd Tysabri infusion on July 9th, and I am already looking forward to #24! (Heehee).

    All my best to you Keli, and 90° isn’t so bad, it’s been in triple digits out here where I live… think 119° is miserable enough for MS?!?

    Lauren 🙂 <<<wiping sweat from brow

  3. Nadja, you are so right. A diagnosis is difficult, but it definitely makes you reevaluate what is important. I remember when I was diagnosed, my doctor told me to make a list of what is important. The things that used to be so important (money, job, etc) ended up way down on the list. Just those few short words, “You have MS” totally turned my life upside down. But I reevaluated what is important, and I appreciate things much more now.

  4. Hi Keli, I’m enjoying your blog, and relating to much of what you write. I have had MS 20 years (diagnosed on my 20th birthday) So that make me 40 (as of a month ago!) and quite frankly I don’t really remember not having this disease. I frequently write on my blog about that identity consideration. I’ve also found myself in the same situation; speaking to others and wanting to help. I never imagined when I was diagnosed that 20 years later I would be effectively managing this disease. I also would be shocked to learn what I’m capable of coping with. It is an amazing ride and its good to have blogs like your to share the story. Come visit mine if you have a chance.
    Best,
    Amy (aglol)
    http://mslol.wordpress.com/

  5. Keli,

    Positive attitude helps living with MS and you are right about it is okay to embrace the pity party now and then because it makes you stronger each time you fight back.

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