Yup, I'm going to keep asking.
I think it's important for us to do things to make ourselves feel good on a regular basis. At least for me, I am trying to stay out of the pity party pit and be open to having a positive and giving attitude. I know that this will be beneficial for my husband, my children and me. Now that my 9-year-old son also has an autoimmune disease (Type I diabetes), I know that it's more important than ever to demonstrate a positive rather than fatalist attitude about my illness.
I have been approved for Tysbari for quite a while, but starting it was put on the back burner with my son getting sick and adjusting to our family's "new normal" of blood sugar testing and insulin dosing.
I was supposed to have my pre-Tysabri MRI the week my son was in the hospital so I had to cancel it, but finally rescheduled it for today. My neuro only did a cranial rather than the usual cranial, cervical spine and thoracic spine MRI to serve a baseline to compare to my future PML-monitoring MRIs. The amount/size/number of lesions has essentially remained unchanged since my May 2011 MRI. I have one active lesion.
This is all good news, but it does not change the fact that my disease progression has changed drastically in the last year or that I don't struggle with things I never have until the last year, including cog fog, sustained mobility issues, dizziness and vertigo.
While I am anxious about begin. ning Tysabri, I scheduled my first infusion for tomorrow. My neuro's office is also an infusion site, so I will be in familiar surroundings with my neuro just down the hall. The nurse practitioner said that most people are pretty anxious for their first infusion, but overall tend to find it anticlimactic. Though I'm scared, I know it's time to take care of myself. I've been off all DMDs since July 2011 so it's time.
Also, I've spent a lot of time watching the Decorah, IA eagle nest that Lexie posted about.
So, that's what I've done for myself so far this week!
03-22-2012, 05:26 PM
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