A Dozen



No more pole dancing - this is my new IV pump. Pump on the left, Lumizyme on the right. It zips up and I can carry it on my shoulder.

Today I had my 12th infusion, my second at the new infusion center. I took a new route today which made the journey so much easier. I did have to hand over $4 in toll fees each way which irks me. I just really despise toll roads.

Again, everyone was really nice. They even made sure the snack drawer had low-carb snacks in it that I could enjoy. A new addition to the infusion suite was a mini fridge stocked with juice, soda, and water. And I think they finally got the thermostat under control as the temperature was consistently comfortable.

I went prepared with my own “tape” which is really called athletic wrap. It is wonderful for infusions, it sticks to itself and not my skin. My nurse said she would request some for my next visit -she really likes that stuff too.

Magic tape for magic meds day. And it's purple - bonus!

The infusion went well, no reaction and once again I feel great. I’m always so energized on infusion days. That Lumizyme is good stuff! I start feeling run down about four days before I’m due another dose, and I often get pain flare ups in my legs. They are nowhere near as bad as they used to be and don’t last as long. Usually one Aleve will calm the pain, at least enough so that I can sleep. I had to take one last night and one two nights ago. A huge improvement from where I was for, well – most of 2009.
I only hit one small snag this time around. For some reason one of the managers wouldn’t let the pharmacist start mixing the Lumizyme until my IV was in. I’ve always been able to call ahead, about an hour before my appointment, to let them know I’m on my way and they would have it ready when I arrived. Hopefully we can get this glitch worked out, otherwise I’m just sitting in the chair for about an hour while they mix my cocktail.
Still going well and still fighting!



  1. I love the trendy IV pump/bag! That is so cool. Isn’t it funny when you think of the things that excite us!!

    On infusion day, I have to go into the hospital first thing in the morning so they can lay eyes on me. They check my stats and, if I’m healthy, the pharmacy gets the go ahead to mix. I can leave for a couple hours. Only once did they start the IV right away, and that was the nurse’s choice. Nice to see that it’s so consistent, doh!

  2. I am glad to hear the new infusion site is going well. I’m sure it was tough to leave Dr. Byrne. We only met him once and we want to head back. Stay strong and keep up the advocacy!

    1. Matt – yes it was. But he is only a phone call or email away. And hopefully we’ll have more opportunities to work together in the future to raise awareness.


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