How did get here
AnonymousApril 26, 2011 at 8:45 pm
He fought the symptoms for 3 weeks untill he finally crawled to my car and we found a Dr who knew what was going on. They admitted him 2 weeks ago Wed. Plasma cleaning is doing nothing. He is not on a vent but legs and arms are gone. Thats not the hard part of all this. Notice there are no lables no titles to who we are to each other because I dont know. We have worked together for 3 years been friends at work for a year. I will admit to a mad crush for the past year but could do nothing about it because of a 2 and a half year divorces drama for him. 2 weeks after the divorce is finished he comes down with GBS. He has no family other than an elderly Mom he cares for. A few close friends but they work full time and have familys. How in the world did I get signed up as care giver. Every night at the hospital. All day long insurance isues and haveing to fill everyone in. All while working myself and trying to keep him working as much as possible to by carting work back and forth to his room. I dont regret helping but we have no base on which to build on or good memories to glaze over when he is grouchy or in pain. Ive now know more about this mans internal workings that I do what he does in his spare time. What the heck am I doing. I feed him and he has never even bought me dinner. Granted he orders me dinner every night on his tray but you konw what I mean. We just dont have the emotional bonds you all do. But if I didnt do this he would be alone and flat on his back. I konw he is happy to see me when I walk in the door and knowing I am helping out another human being is gratitude enough. But am I going to make it through am I going to be able to step up. OH boy Oh boy. Thank you for letting me vent. On the medical side. 4 weeks in and he continues to slide down and they seem out of options. Nothing has made a dent in it. To make matters worse hospital while it is good is tough. He is 6’5 and 275. Not exactly easy to get moved around. Ok enough….by the way my name is Karen
AnonymousApril 26, 2011 at 10:48 pm
What you are doing is very special, your friend is lucky to have someone like you enter his life. You are there because you care
Sometimes we don’t know why or how things happen, we just have to trust our gut and do the best we can.
Has your firend had IVIG?
Take care and remember to look after you too!
AnonymousApril 26, 2011 at 11:34 pm
Karen, you are amazing!!! And I’m sure your friend is feeling the same way. I have CIDP and my husband was my main caregiver while I couldn’t care for myself. It built some of the craziest and best memories ever. The love and security I felt when he was around- was a REAL blessing from God. Just like people like you- A True Blessing!
AnonymousApril 27, 2011 at 10:37 am
It was so nice and reassuring to hear from someone on both sides of this. I know he gets a great deal of security just knowing I am there to handle things and I guess I have proven myself to be efficiant and a get it done kind of woman by us working together. It’s so hard to see him in pain and to not be able to do anything for himself. But its times like last night when its quiet and we are alone and he shares how scared he is and we quietly talk about whats next that I know I am here for a reason and gives me resolve to make it back happy face and all the next day.
They took out his ports from Plasma wash last night and are going to try the IVG thing. They are also taking some small pieces of nerve to send off to Mayo Clinic. He is not reacting typically to anything. We are also in a small Midwest city and while his Neuro is a good man I think he may be over his head. Its good to see him reaching out to others for input. I dont know anything about this new treatment. I need to do my homework. Educating myself is my controlled safe place in all this.
Thank you again for your kindness. I appreciate it so much.
You must be logged in to reply to this topic.