Thank You to All Caregivers

    • Anonymous
      October 20, 2006 at 2:59 pm

      I was talking to my boyfriend last night who has been a caregiver for me (although I feel pretty independant) and I realized how little credit that he gets for all he does for me and all that he has been through. I know caregivers dont do it for credit and its just a thing that is done out of love but I wanted to say thank you to all the caregivers, we would not have made it to the point we are all at without out you!

    • Anonymous
      October 22, 2006 at 6:57 pm


      Thank you for the kind words, but you are right when you say that we do it for love. It’s always love that had driven me to care for my Frank and give him the best that I could give. I wouldn’t have had it any other way.

    • Anonymous
      October 31, 2006 at 1:15 pm

      I totally agree with you Brandy.
      When Nate got sick I was incredibly scared we would lose him and he came close.
      I spent as much time as I could with him and it was very hard with him being 100 mi away and me being still a newlywed of 8 mos.
      I felt so torn between being home and being up where Nate was.
      I would have done anything I could to make him better but only medical procedures and time could help him.
      He has been home for a month now and though it was kind of hard at first to figure out what to do, it is getting easier in some ways but still a challenge.
      I just keep going though because I love him so much and want so much for him to get better.
      My super understanding husband was great throughout the whole ordeal with Nate being so far away. It has brought him and both my sons very close also.
      I know without his love I don’t think I could have made it through.
      Nate says the same thing about us but I can’t imagine it being any other way.

    • Anonymous
      November 2, 2006 at 12:08 am

      I’m bringing this back up so that I can say thank you again to my dear Husband and all the other wonderful caregivers ๐Ÿ™‚ There are some of us who wouldn’t still be on this planet had we not had their love, care and encouragement. And thank you to ALL of You for the “care giving” you give on these forums ๐Ÿ™‚ ๐Ÿ™‚

    • Anonymous
      November 2, 2006 at 7:04 am

      Your timing was perfect, as I needed to hear that! Abby, my daughter, has CIDP since about 2 years old, not as bad as alot of others, but she still has it. Abby is now 10 years old. She just got her 2nd portacath last week after no meds. for 3 years. The pain of the surgery was tough on her and she said some mean things to my husband and I . Like “why did you let them hurt me.” Abby knows that I always say she is the CIDP poster child because she is the luckiest as far as how bad she is compared to others. I don’t think or maybe don’t want her to know how bad it could be. She has started asking the “why me” and so we started seeing a therapist. I know alot of it is brought on by her age and hormones.

      The whole experience has brought my husband and I closer than ever, thank God I couldn’t do it alone. Alot of people look at Abby and see no diease and can’t understand why my worries. This year her school teacher didn’t want to give Abby a chair and desk that were size appriopriate, Abby is short and small. She needs to be able to put her feet on the ground and a desk the right height or her writing arm falls asleep. Her inital teacher said she “used tables not desks,” I truely think she thought I was making everything up. Abby has a new teacher now, who has an Aunt who gets IVIG due to an immune problem. She gets it, she understands the CIDP and my worries!

      I wouldn’t do anything different, never push for less from the doctors or school. Sometimes they don’t see what I see with Abby, and it is my job and pleasure to do the best I can for for her. God gave Abby to me as he thought I could deal with the issues, therefore I do the best I can, no matter how pushy I come off as. The CIDP has made Abby the person she is! She has more empathy than most kids her age for others with special needs. She is wonderful!

      Thank You for the words , we all need them sometimes!

    • Anonymous
      November 2, 2006 at 11:47 am

      I should also add that even though my boyfriend is my primary care giver now, I dont know what I would have done without my parents when I was in the hospital. They both spent weeks with me in the hospital and stayed in a hotel nearby. They were there M-F and my boyfriend was there S-S. Now that I’m home, my boyfriend chips in around the house but my mom and sisters come out to clean my house every other weekend (since my boyfriend and most guys for that matter dont seem to realize there is a difference between picking up and cleaning). My dad comes up to my house which is an hour drive away, to bring me to doctors appointments as well. So even though my boyfriend is now my primary caregiver on day to day things, the rest of the people mentioned above are also invaluable to my every day living as well.

      Thank you all… as no job done to help out is too small!

    • Anonymous
      November 2, 2006 at 12:12 pm

      I want to say thank you to three sets of people:

      The first is my parents and my in-laws…both of whom flew in (one set from the west coast and one set from the east coast) to take care of me while I slowly deteriorated over 2 months. One set would stay 1-2 weeks and then swap places with the other set of parents — fly home for the next week or so and then return again to help my husband take care of me and our infant daughter.

      The second was my company. I work for a company located in a different state and my boss flew in to visit me in the hospital several times and to tell me my job would be waiting no matter how long it took for me to recover. He brought cards and e-mail wishes to cheer me up. It meant a lot that my comany cared enough to make that effort.

      Most importantly, I also need to say to say thank you to my husband. In between studying for exams to finish a Master’s Degree program through the US Army, taking care of me, taking care of our daughter, running back and forth every day to the hospital, he still managed to go out and buy a christmas tree and even decorate it. When I came home from the hospital he had already put up the tree to surprise me. I spent a lot of time on the sofa next to that tree (propped up because it was painful and difficult to breathe when I laid flat on a bed). That tree was the only decoration in our house that year but it sure meant a lot to me!

      Thank yous go out to all who do that little bit extra just to make your particular patient happier, allieviate the stress of home life/work/childcare, and just generally make things more comfortable. You are all incredibly supportive and greatly appreciated!!

    • Anonymous
      November 22, 2006 at 7:57 pm

      I love being Ben’s caregiver (aka number one cheerleader ๐Ÿ™‚ ). His GBS has brought us so close, and I wouldn’t change it for the world. He says he’s going to tell me a million times a day how much he loves me. He takes very good care of me, and I try to do the same for him. We just celebrated seven years together, and I’m looking forward to many more years with him.


    • Anonymous
      November 22, 2006 at 9:40 pm

      I want to say thank you to my wonderful husband who was my primary care giver during my illness. He rose to the occasion and made things so much better by being willing to do whatever was necessary to help me to find out what was wrong with me, and helping me to get well. I’ll love him forever for that.

      Also, I was lucky enough to have employees who pulled together and did whatever was necessary to keep thing going at work when I couldn’t help. Their loyalty, caring, and willingness to help was above and beyond what I could have expected.


    • Anonymous
      November 22, 2006 at 11:34 pm

      I am so thankful to my mother for bringing her 33 year old son back into her home and taking such good care of me like only a mom can for the past 3 years. She is the best.

    • Anonymous
      November 23, 2006 at 9:38 pm

      Jer, you’re very fortunate to have such a nice mother to care for you. You’re also lucky to have me as a fill-in when your she’s not around. :p

    • Anonymous
      November 23, 2006 at 11:29 pm

      Isn’t that the truth Shan ๐Ÿ™‚

    • Anonymous
      November 24, 2006 at 3:00 pm


      That is a really sweet post about your mother. I hope you share it with her.
      Hugs to you both.


    • Anonymous
      October 11, 2007 at 4:40 am

      That was a wonderful and heartfelt threat and I think it reminded a lot of people how lucky hey are to have people in there lives that love them unconditionally. I am greatful for my mom who has supported me in any decision I made. I am also grateful for my son, who is perfectly healthy, but I know if he wasn’t would be just as awsome.

    • Anonymous
      October 12, 2007 at 4:38 pm

      I moved to IL without any family about two years ago. I was diagnosed with GBS in May of ’07. It has been SO hard to go through all this without my family here. My boyfriend has been a godsend. He cares for me and when I was in the hospital, I never ONCE felt alone, because he was there with me every moment. I don’t think he gets enough credit for putting up with me sometimes. My depression and mood swings can be terrible, but he knows as well as I do, that they will pass.

      I love you, Tim. Thank you.

    • Anonymous
      October 22, 2007 at 3:36 pm

      Just yesterday my wife and I were talking and I ask her about some of the things she went through when I was in the hospital. I tell you what she and I both were crying at the end of the talk because I really did not go know how much she went through when I was down. It was alot. I love her so much for not giving up on me and not letting the docs send me to long term care. Sometimes we need to sit and talk to each other about it cause I think now it was just as hard on her as it was on me


      gbs march 2007