I am so glad that you were able to get in touch with Emily. We both underwent the same cytoxan protocol, but because of her age I felt that she & your sister were more alike, & also the fact that she was able to make essentially a full recovery. How wonderful that she is coming to Chicago to see you, I always wanted to meet her. I have pictures & she is such a lovely girl. BTW Emily lives in St. Louis, MO.
I called the number that was given to me but got a voice mail. I did leave a message, but haven’t heard anything yet.
She did have one Cytoxan treatment. She is now moving her head better and her jaw. Is this due to the cytoxan? not sure, but we are going to say that she’s on her way. Baby steps. All in baby steps.
She will be moved to an LTAC facility probably on Monday. We’ll keep our fingers crossed that it all goes smoothly. We love the nurses and facilities at Lutheran general (where she is now), but we can’t stay there forever, I guess.
Keep the faith!
I hope that most who read this post realize that it is from June of 2006 & not a current one. I did talk to Emily last summer & I know that she is doing really well at age 25 now, living in a large condo by herself & was going out a lot with friends, driving (even walked away from a bad accident), & was thinking of going back to school to become a medical transcriptionist. I”m not sure if I even have a current phone number for her, & I think she only uses the computer rarely when she has access to one. I believe that the only treatment she is now getting is IVIG once a month & she can even run! That is about all I can remember from the last email I received from her…
How much you have had to go through in your short 24 years. Young people & children should not be born disabled, should not get seriously ill, & should never die, period. That is in a perfect world. Unfortunately, as you have learned by now, we do not live in a perfect world. Why these things have to happen, no one can answer, not even the clergy really try.
I wish I had an answer to your questions of why, but all I can do is offer you my love & support as so many other wonderful members have done. Your pain is all of our pain, we hurt when you hurt. And I would give anything to be able to be there in person to give you that hug that you need right now. So instead accept my prayers & my love, I feel like we go back far enough for me to say that. Also, email or call if you need more…
I love your name. My oldest daughter who is 24 is named Emily. I’m also so sorry for your loss. I will pray for you and your friend. It is hard to experience losses. You are in such deep pain that you cannot describe it. I feel I lost part of me when I contracted GBS in 2004, a severe case, from which I will never be the same. I have adapted but miss the old lifestyle. The plans I had have been changed. I must say I look to my faith in Christ to guide me through. I read in a devotion that it is in the difficult times that God grows us to be more like Christ. That is our goal to become like Him although we will never reach perfection until eternity. God doesn’t cause these things to happen to us and He knows everything we are going through because He himself came to earth as Jesus Christ and experienced more pain then we will ever experience. Find strength in Him and those who comfort you. I believe someday you will be used to help someone else along the way.
I have a almost 11 year old daughter with CIDP, dx at 3 1/2 years old. What meds. are you on that have affected your period. I have never heard or thought that would be affected. I always thought that when she started puberty it would put a stress on her immune system and the CIDP would flair up.