Bawling is normal
I’m so sorry to hear what you are going through. I can say it because I did the same thing. The moment I was given the stamped CIDP dx, upgraded from PN, I went through a mourning period. I mourned the person I used to be. That endless energy that I had just 3 years prior, was something I knew I would kiss goodbye. That made every sad and angry. I think I went through all of the stages of mourning and loss. You know, denial, anger……… I’m still not sure I have grasped excepting it yet. Just when I think I have, my legs give out, I trip, I drop a glass because my strength is gone, and sadness returns. And it is sadness, not pity. I’m sad because I can no longer be the mom, wife or person I once was proud of. I used to fight for others, cancer awareness, jobs for the people, now it’s a struggle to get out of bed.
I’m sorry I am not telling you that it will all be ok because it is a long road to recovery. It’s a disease of 3 steps forward, 2 leaps back. The key is to have a good, no, great doctor as your advocate. If you are not satisfied, go to another. I kept getting worse over the 5 years I was told it was PN, I went through 18 neurologist until I found the one that agreed to treat me with IVIG. He told me that if my NCV’s continued declining as they were, I would have been in a wheelchair within the next 12 months. So he started treating me. I had a 5 day, inpatient loading dose and felt awful for a week after I was released. Then on the 8th day after my treatment, it was like the cobwebs were lifting from my mind and someone had put oil on my body like the tin man. I felt fantastic! And it only got better for the next week. Within the next few weeks I was back in the hospital for another 5 day treatment. It took a while to get the rhythm of the treatment that was right for me. It took 2 years. It’s frustrating, it’s scary, it’s the unknown.
You have every right to be scared. Just know that IVIG is the right thing to do. So you are taking the steps to slow, even stop the damage. I was on this website all the time reading stories, asking questions, crying and getting advice. Then I found myself giving advice. Eventually, I found myself feeling better, stronger, happier. This forum is a tool to vent, help and seek advice. You are surrounded by wonderful, knowledgeable people who have been where you are and are even finding cures. Keep reading, research your questions and don’t be afraid to mention anything you read about to your doctor. You are getting your information from the horses mouth, us, the patients diagnosed with your disease. Welcome to the forum, although I’m sorry for the reason you are here. Just know that you are not alone, by far!!!!!