Sarah's neurologist from the Cleveland Clinic called us today (actually his poor nurse called us) to let us know that if we do not place Sarah on Avonex he no longer will accept her as a patient. He will also not prescribe her a taper that she desperately needs in order to safely come off of her steroid treatment (because we refused to put her on Avonex). So, we are hoping that the on call neurologist who prescribed Sarah her initial steroid dosage while we were still in the hospital will offer us a taper. We'll see...
What I do know is that I am looking for a new neurologist.
Life is really hard right now. It is a million times harder than I ever imagined it could possibly be. I feel like throwing in the towel. I am tired of fighting against the grain. I wish I just did what I was told without questioning everything. Life would be a lot freaking easier right now, and Sarah would have a neurologist.
I am beating myself up about every decision I have made since our journey began. Maybe all of these decisions I have been trying to make with Sarah, and also on her behalf are worthless. Maybe I should just throw her on this drug despite my reservations because she will be seen as a "qualified" patient that pediatric MS doctors will treat. She will also be seen as having a compliant family that is easy to work with.
Or...maybe I should just tell this doctor to go take a hike. Maybe being kicked off of his patient list is going to lead our family to the doctor who is truly supposed to help Sarah. Maybe this whole experience today is a blessing in disguise. Maybe I was born a fighter, and a questioner because my life was leading me to this point. That if I did not question things then I would be putting my daughter on a drug that she was not meant to be on at this time.
This is definitely one of those situations that I could easily become bitter about. Or...I could walk away from it with no chip on my shoulder, but instead with the attitude that better things are yet to come.
It is hard to be the one questioning, inquiring, pursuing alternatives to conventional thought and practice and you are so right that it is easier to just do what everyone else does, but you have shown your strength and your resolve in the face of this adversity with Sarah and it is inspiring for all of us following your journey.
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