October 24, 2011 at 4:11 pm

I do actually think that is appropriate to bring up that time period, only because the idea behind this thread is, “where are all of the people who used to post?” I think that that particular Feb. there were a lot of hurtful things said, a lot of it directed at me & Alice, just because we were supporting the cytoxan protocol, hers the SCT & for me the high-dose cytoxan protocol. I believe the fighting turned a lot of people off, but like Alice I am tough-skinned & if Kelley sent me a nasty email (it would probably still be in my inbox,) I have no desire to read it, as that was a long time ago & I know what a good person you are Kelley, & would never hold a grudge.

I have a 30 yr. old son with spina bifida & you have a child with CIDP, both of us know the heartache of feeling so helpless at times watching our child. My son is in a wheelchair with a shunt & totally incontinent, yet he graduated from college with high scholastic honors & has been a sports journalist since he graduated from college. Your daughter is doing excellent, for that I thank God, count your blessings. I feel badly that people like Dawn & WithHope felt it necessary to leave, but maybe they just got on with their own busy lives? Brandy used to post on almost every thread (her husband had CIDP,) but after he passed away, she moved on with her own life. Dawn is healthy, why would one expect her to devote her life to this forum?

There are always new people coming on here, people have come & gone for for 9 yr. I have been on this forum. I stay because I have time & feel like I know a lot about this illness, I also have residuals. Alice is back at work & travelling Europe (hope you are having a wonderful time, Alice.) I have said before & will say agin, if IVIG infusions can make one almost normal, stay with them. I was not one of those, I had 44 IVIGs, 17 PE, & 21 months worth of weekly solumedrol infusions in 8 months & was still basically bedridden or in a power chair with no use of my hands. Cytoxan gave me my life back; I have residuals, but have not had any treatments or seen a neuro since 2004. Let’s hope some of those active people on FB discover or come back to this forum, I will continue to try to help those who need it. Alice is a great person, & I know that Kelly is as well. Must go &pack for my 10 day trip to the Cape to see my daughter & her family.