Support Desperately Needed

    • Anonymous
      May 30, 2007 at 1:08 am

      Hi Everyone,

      I am having a real hard time right now and I can’t stop crying. Four years ago a bunch of my friends went camping and one of my friends got up early one morning to go sit away from the campsite to study. After she did not return, they all went out looking for her. Her boyfriend who is really good friends with my boyfriend found her, it appears that one of her books fell off the edge of a cliff and she tried to reach for it and fell, an hour later she died in his arms at the age of 22 because they were not able to get a hilocopter down to her in time. While he climbed down to help her he hurt his back really bad. A year later he was dx with cancer, apparently tumors formed in the scar tissue when he hurt his back, a year later he died on my 21st birthday at the age of 24. They sent him home to die, and a few close friends and I held his hand for 2 days while he died, and it has been the hardest thing I have ever had to watch, I took it so hard that it made me relapse. Right when he died is when I started my chemo treatments. It was so hard on our friends that I lost a lot of them because they did not want to watch me go through the same thing and they are young and scared.

      I have 3 really goood girlfriends who have stayed by my side throughout my illness. A couple years ago one of them was dx with ovarian cancer. She had a complete historectomy, and they told her that they got it all. Today I just found out that it came back and they are giving her 1-3 months. I love her so much and it is going to tear me up to have to watch her go through this. She has a 5 year old daughter who has never met her father and he has nothing to do with her. I am so heart broken and in so much pain. I feel like I have had so much taken away from me already with my CIDP, and now she is going to be taken away from me. I feel like I am being punished by everything I have had to go through in the past 4 years, and I don’t know how much more I can handle.

      I really need you guys right now, I think of you as part of my family and I just wish I knew at least one of you in person so you could give me a big hug. Please pray for her, her name is Amanda, she is 25 and one of the sweetest people you will ever meet. I feel like I am going to fall apart and I need you guys more then ever, I don’t know if I can watch her or anyone else go through what I watched my boyfriends friend go through.

      I wish everyone good health, and to take care,

    • May 30, 2007 at 2:21 am

      Emily, I am so sorry! I am never up this late on the forum, something made me look. I hope I can help you. In spite of ALL of the hardship and death that surrounds you, God has chosen that you should live. Take this as a sign of good things to come. I do not even know what to say to convince you to be strong, I cannot even imagine the turmoil you must feel. I can tell you that when faced with premature death, you eventually do start to heal, many years later, but it does happen. I do not understand to this day why God has chosen to hand me bad cards either, I too have had cancer, buried a baby boy named Andrew and now my sweet baby Kevin has been stricken with gbs/cidp. Not even the dx is simple! Like you, I cannot figure out why God is doing this and why he continues, I too wonder how I can go on sometimes. But I do and I will, I have my family and they need me. YOUR FAMILY AND FRIENDS NEED YOU TOO! Some where you have to find strength, you have your future ahead of you and things will get better. I know they will, I am banking on it for Kevin, Abby, Emily, Nate, Dell, Cody. You, annother Kevin, Lydia, Jenn, Cannaris and all of the other sweet little children and young adults. I pray for a cure like so many others, all of the adults on this forum think about you children and young adults all of the time. Everyone together is going to get through to God eventually. In the meantime, please keep strong and patient. I hope you can get just a little rest tonight and a little more the next day. Please know that even though we do not know each other in person, we know each other as caring human beings, and I care about you and will pray that God gives you strength to feel better. Call your close friends, rely on them and your family! E-mail me if you like tommorrow, or should I say later today. We should be home from the neuro by 12:30pm. Love Dawn Kevies mom:o

    • Anonymous
      May 30, 2007 at 3:13 am

      Hi, Emily.

      I’m so sorry about all the sorrow that you’ve had and continue to have. Please know that I’m praying for Amanda and for you during this difficult time. Keep us apprised of what happens.


    • Anonymous
      May 30, 2007 at 9:07 am

      Emily, Well I’m not sure where to start but do know that my heart goes out to you with all that has happened. I will pray for you and Amanda. God will do what he feels is right even if we don’t quite understand. But I realize that doesn’t make us feel better but know in your heart that he is always with us to get through all the hard times. You can email me and or call 5175438974 if you just need someone to talk to. Try to keep your chin up and get some rest too. Do take care and know I am here. God bless you and your friend too.

    • Anonymous
      May 30, 2007 at 2:56 pm

      Emily all I can do is send you big Mom Hugs, so please wrap my arms around you and feel the love and caring that we all feel for each other here.

    • Anonymous
      May 30, 2007 at 4:31 pm

      Hi Emily!
      I’m sorry you’re under so much stress. Remember God is in control.
      He cares for His children.We all here love you.You, your family and
      friends are in our prayers. Stay blessed.

    • Anonymous
      May 30, 2007 at 5:23 pm


      I don’t know what to say,just I’m sorry for what you are going through. Some ppl. are dealt so much and I don’t know why.

      We have a 3 year old with CIDP. Dell was not planned, we were not going to have anymore children, Kirk’s mother was dying of kidney cancer when I became pregnant and now, he has this horrible disease. I don’t know why.

      Life is not fair sometimes and that’s all I can say. Of course I will remember you and your friends in my prayers.

      Hope your days get better soon.
      Love, Lori

    • Anonymous
      May 30, 2007 at 10:03 pm


      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.


    • Anonymous
      May 30, 2007 at 11:39 pm

      Hi Emily, I’m sending you Big Hugs also. I know how you are feeling, there is no easy answer to your questions concerning Why me. I had ovarian cancer in 04, by the grace of God i caught it in the immature cell stage. went through the total hyst surgery also. I have lost many young people in my life, my 21 year old cousin, about 19 years ago. just this year i have lost 6 acquaintances, friends and family, and my f-i-l is battling stage 4 cancer also. life isn’t fair in alot of ways, thats why God gives those of us, who are strong, alot to handle, because He knows we care and will get through the hard times. I believe there are always lessons to be learned and it takes a strong person to look for that lesson and learn from it. it will take time to get through these tough times, now and in the future, but you will be able to handle it, with poise and strength. You know you can count on This Family to be here for you in your time of need, we care ALOT about you and feel your sorrow and pain of All sorts. Take Care, Emily.

    • Anonymous
      May 30, 2007 at 11:42 pm

      You and Amanda will be in my prayer each day. I know that you are under a lot of stress. I pray that the Good Lord will give you and Amanda the strength and the courage to face the days that lie ahead.

      Jim C

    • Anonymous
      May 30, 2007 at 11:55 pm

      Hi Emily,
      Caroline couldnt have said it better. We encounter these “burdens” because they draw us closer to Christ. He went through the ultimate pain and death so that we can “put on Christ”. Although it seems like we will never make it through these turmoils, he will never give us anything we cant get through without him. What you are going through is so tragic and my heart goes out to you. I had a second episode of GBS 2 years ago, which was very severe and I almost died, the only thing that got me through that was my faith and how much I had to be thankfull for. In the end I actually was able to say that my GBS touched other peoples lives and I was a “witness” to them. Since then I have lost my Father(62) to suicide, my Stepfather(62) to a heart attack and just lost my Mother to stage 4 lung cancer (64). I take one day at a time. It is only my sister and myself left and I go through so much thinking about losing her and my husband and daughter. DONT be affraid to take medications to help you get through this (I hate meds but learned sometimes you cant do it on your own). Get your rest and if you need a sleep aid once in a while…use it. I will pray for you and your friend and I pray that you are able to witness to your friend so that any fear she has can be diminished knowing that God loves her and will never let go of her. This forum is a classic example of how we need him and one another. Take care. Joanne

    • Anonymous
      May 31, 2007 at 12:12 am

      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…
      Blessings, Pam

    • Anonymous
      May 31, 2007 at 8:35 am

      Hello Emily,
      You will be in our thoughts and prayer’s that you will have the strength to be there for your dear friend. And you will be in our thoughts and prayers that you yourself will be able to get through this and not understand, but to endure. THIS IOU is for you:


    • Anonymous
      May 31, 2007 at 8:54 am

      I just wanted to add this, leaning on the Serenity Prayer may help.


    • Anonymous
      May 31, 2007 at 10:19 am

      Emily – I’m praying for you, Amanda, and Amanda’s little one.

    • Anonymous
      May 31, 2007 at 10:46 am

      Dearest Emily,

      How my heart goes out to you! As always, words fail me at a time like this, but I hope that knowing all these wonderful forum family members are thinking, praying and reaching out to you will somehow bring you some comfort in these trying times. God Bless!

    • Anonymous
      May 31, 2007 at 10:50 pm

      Hi Emily,
      Im so sorry to hear that more and more bad things continuously happen to you. I really hope your friend is ok. And im sure she’ll pull through. You’re right. No one should go through any of this ****, and you’ve had to deal with it on an entire diferent level. I will pray for you and your friend. I hope you and I can meet and become close friends because we are the same age almost and share a lot of the same interests. I know its hard but try to take it easy.
      Here for you always,

    • Anonymous
      June 6, 2007 at 11:31 pm

      Thank you so much for everyones prayers and comfort.

      My friend was supposed to come over after her radiation treatment, but due to her white blood count they kept her, and I have not been able to get a hold of her since.

      Since then, I recently lost a friend from a heart attack, his funeral is this Saturday. One of my other friends is 8 months pregnant. At 4 months they realized the baby ‘s skull did not properly form and it’s brain is exposed and as soon is it was born it would die. The hospital looked at it as an abortion to terminate the baby, so she has carried it for 8 months so they can donate the baby’s organs to others. She went in monday to be induced, and here 3 days later she has been induced 7 times and is still in labor. She is in a lot of pain, and an epideral could be harmful to the baby so she is on a morphine drip. We got news today that the baby may have already passed on and if that is so the organs will not be able to be donated, which is what has given my friend peace of mind. They are going to break her water tonight so I will know more tomorrow.

      Please keep my friends Amanda and Veronica in your prayers, they really need them. Thank you all,


    • Anonymous
      June 6, 2007 at 11:44 pm

      Emily –

      I am praying for you and your friends.


    • Anonymous
      June 6, 2007 at 11:51 pm


      You and your two friends are in my prayers. I hope things will look up for you and for them soon.


    • Anonymous
      June 7, 2007 at 8:50 am

      Emily, My heart is breaking for you. I wish I could be there to give you the shoulder to bawl on. You and Your Friends are in My Prayers and Thoughts. Take Care, Hun!

    • Anonymous
      June 7, 2007 at 12:28 pm

      Emily, My heart goes out to you. The main thing and I am not preaching, just made sure you have ask the Lord to forgive you of your sins and be saved. That will not make life any easlier, but it does when we pass from this world.
      I am alot older then you but can feel for you. I lost my grandmother to cancer and had both breast removed due to cancer. Then I got GBS/MF and have struggled with that for years now. I will definitely keep you and your friends in my prayers. If you would like to talk to someone on the phone, please e-mail me at willierigdon@comcast and I will give you my phone number or I will be glad to call you. Sometimes it really does help to just have someone in person to listen to you and comfort you. May Gods Blessing be Upon You.:)

    • Anonymous
      June 7, 2007 at 12:37 pm

      Hey Em,
      Wow your luck doesnt get any better. Im so sorry about all of your friends and there luck as well. I truly hope the baby and veronica And Amanda are okay. Somehow God shows us he loves us. But lately he’s been challenging you. Im sorry. I hope everyone gets better and you stay well. I know its hard not to get worked up…but try like hell to not relapse. I dont want to see you go through everything again. Always in my prayers Emily.
      Love, Jenn

    • Anonymous
      June 12, 2007 at 2:21 am

      Thnak You Once Again Everyone,

      Veronica had her baby after 3 days in labor. She told her 4 year old daughter that the baby she was carrying was an Angel, and had been sent here to save the lives of other babies by donating the babies organs. The baby died 24 hours before she was born so her organs were not able to be donated. Veronica is in great heartache and will not let anyone visit her, and she is really questioning her faith. Her sister has been one of my best friends for 10 years and neither of us know really what we can do to help her other then be there for her. I don’t know what to say to her other then letting her know she is constantly in my thoughts and prayers. My heart goes out to both of them and the rest of her family.

      I have been trying to get a hold of Amanda (my really good friend who was dx with terminal cancer with 1-3 months) for over a week. I have talked to common friends of ours, and they too say that they can’t reach her. She is starting to shut out all of her friends, even her family. I want to be there for her, and I leave her messages letting her know that I want to, but she never calls me back. I called the hospital to see maybe she wasn’t calling me back because she was still there, but they said she already checked out. I am so worried about her, I just want to see her or just even talk to her. I want her to know how much I appreciate her for all the times she came to the infusion center to have lunch with me and play board games, and for pushing me in my wheel chair on a cobblestone street through crowds of people so I could see a parade (not very ideal conditions with an old broken down borrowed wheel chair with dry rotted tires). She was so sweet to me and there for me in some of my toughest hours, and I want to be there for her.

      Three days after my friend Dave died from a heart attack, his little sister overdosed and killed herself. I don’t really know how I feel about it, I am shocked, I can’t believe it. I am really sad about the whole situation.

      Wow, what a bad week this has been. I feel really stressed, and have been trying to rest, but I can’t sleep and I have had 2 funerals, 2 graduation parties I was made to attend, an IVIG infusion, and now my friend wants me to help her plan a memorial service for Veronica’s baby, and I can’t tell her no. I am tired and everyone around me keeps pushing me to keep going, they just don’t understand that even though I look like and act like my old self, I can’t do what I used to be able to do, I am exhausted! Don’t worry I will take care of myself.

      Please keep all of us in your prayers, we really need them. (Thank you for all of you who are following my story and praying for us, I hate to be so depressing, and I know it is a lot to read).

      Thanks everyone, you are amazing people who have really touched my life,


    • Anonymous
      June 12, 2007 at 11:18 am

      Emily, You Are the Amazing Person! You are such a Great Friend to All those in Need. I feel so bad for You. Your strength is just Wonderful. Please know You and Those around You are always in My Thoughts and Prayers. Take Care! Big Hugs!

    • Anonymous
      June 14, 2007 at 7:06 am

      I am far away from you but in thoughts for you I am close. Please accept my hugs and prayers for you and your Loved ones.
      Kind Regards

    • Anonymous
      June 14, 2007 at 10:33 am

      You Have all my prayers. Take care Em and really as hard as it is, try and take everything slow and relax. Love u, Jenn

    • Anonymous
      June 16, 2007 at 11:03 pm


      I’m so sorry for your loss at this sad time in your young life. You have demonstrated such strength and resilience in your struggles; you are a hero for young people with chronic illnesses to look up to. My thoughts and prayers are with you now and in the days ahead. May the Lord hold you close, and give you peace.


    • Anonymous
      June 18, 2007 at 2:17 pm


      Just wanted to add another ******{hug}}}} for you. I don’t have any answers as to the why’s of all these things in life and at the same time. Please keep the ‘faith’ – whatever that means to you.

      We are here – please keep us posted.