Confused Mom

November 25, 2011 at 6:29 pm

Thank you, Linda and Alice for addressing the very fears that have kept me idle in respect to proceeding with IVIG. I must admit, however, that I am more confused and scared out of my mind than ever before. I have a great deal to consider, ponder, and pray upon. Not that I haven’t already.

If CIDP has affected my autonomic nervous system than I know I have to do more for myself than take the natural approach for fear that I will lose my life.

If I wasn’t a mom to a young child there’s no question I would have started the infusion therapy the moment I was diagnosed. But I’m scared out of my wits that I will contract a disease that will take my life sooner and, therefore, leave my daughter without a mother.

All along I’ve been assuring her that CIDP will not kill me. I’ve remained optimistic and repeatedly reminded her that while it’s an inconvenience, I can still do most things I did before; but differently. This is how I’ve approached the disease. I’ve thought all along that it was about pain, which I’ve been able to manage with natural products, and an inconvenience not being as mobile as before. I truly did not believe it could take my life, though. So my reasoning was, why risk even the remotest possibility of being infected with diseases that can come along with IVIG?

I won’t pretend to know anything about stem cell transplants because I don’t. But, wouldn’t I need to have been infused with IVIG before they even consider me for an evaluation? What are the risks that come along with these transplants? Has anyone ever died from one?

While I strongly want to walk on the streets of Paris as we’ve done in the past, my greatest desire is to live for many more decades to be around for my daughter. Can’t I do both???

I guess I need to be evaluated to see if the CIDP has actually compromised my autonomic system, and take it from there.

For all of you out there who have made a decision, regardless of the approach you’ve chosen, your courage to go forward with it is so enlightening and encouraging to me.

My sincerest thanks to you, and to all those who continue to teach me about this mean-spirited disease. I wish you all the best life possible!

Claudia