keeping friends

    • Anonymous
      July 23, 2009 at 7:57 pm

      i am having a hard time with a friend of mine everybidy says it is her and not me. I cant help bbut wonder….maybe it is because of my illnesss. i am having a hard time right now with my hands and trouble with walking. maybe it s too much for “normal” person to cope with. Iknow my family has a hard time so maybe i am destined to have only them. I get so depressed stuck in this body. I just want to be ok but according to the doctors it is going to get worse. i am sorry this is a pity party .I feel so overwhelmed. I see a head therapist as well as a psychiatrist. I am bipolar so that doesnt help matters either. I just want my old life back…before GBS and CIDP. these last couple of years have been hard. First GBS paralyzed from the chin down for a better part of 2 years. Lved in a nursing home got simewhar better and waas walking with just a cane and driving. now cidp and no driving. walk with cane but use crutches sometimes and hands are going n umb again. Not to mention incontinence. finally got that better after GBS and now its starting again. I am really tired and they cant figure out why. I have sleep apnea and they are thinking i need my machine refigured. So just something else to deal with. well better take my meds and get into bed thanks for listening(reading)

    • Anonymous
      July 23, 2009 at 11:11 pm


      yOU ARE TIRED all the time because you have CIDP. CIDP comes with Chronic fatigue, tingling and numbness, incontience in some patients, tremors, weakness in arms and legs, paralysis. All of these symptoms are CIDP.

      You say you want to get better if you really want that then y ou have to find a new doctor (neuro). This Neuro you have now is not doing you any good. There is no reason for y ou to get any worse than you are now. It is wrong of your doctor to with hold IVIG treatment or any other kind of treatment because you have bipolar. Bipolar is not a reason to not give you treatment for CIDP. I wish you would understand that and get searching for another doctor.

      if you really want your old life back then get a doctor that will give you treatment. Not your current doctor but a new doctor….

    • Anonymous
      July 24, 2009 at 12:02 am

      Hi Jojo: people are getting impatient with you for not acting more forcefully to get the treatment you need. But many of us here know how hard it is to be your own advocate when you are ill and perhaps depressed. I know in the midst of my illness I was making very bad decisions and simply did not have the energy to think about them. Thank god for my wife who was my advocate. Do you have anyone who can advocate for you? Help you search for a better doctor or talk to the one you have? It sounds to me like you need someone to help you deal with all of this which is very overwhelming. You mention a therapist-sometimes they will advocate for a client, I know I have. Or perhaps you can call the local support group and ask if there is anyone who can help you. You may not be able to handle all that you are going through and search for a doctor or the right treatment-reach out and see if you can find someone to help. Jeff

    • Anonymous
      July 24, 2009 at 2:09 pm

      thanks i know it seems i am not heeding your advice but i try. I am stuck right now because my mom is out of town and she handles my appointments. I know i should be making my own dr apptments but i cant get to them without my parents and i cant pay for them without my parents. it seems way to complicated but thats tthe way it is. My mom is trustee over my money and everything goes though her. it is a long complicated story that has to do with my mental health issues before GBS/CIDP.Sorry my post are frustating but imagine how i feel. tthaanks for the replies. Jojo

    • Anonymous
      July 24, 2009 at 3:35 pm

      I realize that you are not in a “normal” situation.

      Is there any way you can ask for an advocate, other than your mother, to take control of your money & appointments? Maybe you can ask your therapist to help you get a court appointed advocate.

      It does you no good when your mother is in another state & you need to get things taken care of. Also it sounds like your mother doesn’t believe you about your health issues. Getting another advocate would be a way for you to take control. By continuing to allow your mother to control things you are, in essence, leaving your possible CIDP to continue doing damage to your body. The longer you wait for treatment the harder it is going to be to get better.

      It may end up being a relief for your parents to not have to make all the decisions for you. An advocate can arrange your dr’s appointments, get you to & from the appointments, oversee your money, etc. They may even be able to get you into a group home setting with other people your age & with your issues. That way you will have support from others who understand & be able to learn to live on your own.

      It is frustrating to us who are not in your position. I hope you understand that. The frustration isn’t because we don’t care, it’s because we do care & we can’t stand to see you being left this way.

      Take care,

    • Anonymous
      July 24, 2009 at 3:44 pm

      JoJo, slow down, take a deep breathe, and take baby steps towards your goal-of getting your life back. Please remember it takes time to recover-you will get better, you will need to realize you will have a New normal life, with cidp, with bipolar, with as much support as you want. Maybe you won’t be running around 8 hrs a day shopping-it might only be for 2 hours. You need to just calm down, look inside of yourself-ignore all your other health issues for awhile, concentrate on just one issue at a time. Decide what is the hardest thing for you to deal with, walking-for instance, then figure out how you can get control back. It is a step by step process. It is a very doable task. You need to be the one to make all the decisions in front of you, its your body-no one else knows how you feel, what you can do or what your limits are-only you know! Don’t depend on what others are telling you- for example-you will get worse, you are not weak in the ankles, you can do this or that-only you can make those statements after trying it for yourself. Take control of your body. once you are true to yourself, the rest will fall into place. Its time to put yourself up on that pedastal, take care of your needs-by yourself when possible, then if you can’t do for yourself ask for assistance. There are always ways to accomplish tasks, it may look funny the way you are able to do it, it may take you alot longer to finish the task, but it is all up to you, don’t depend on others.
      You have cidp, the hardest time is behind you at this point, the only thing left to do is accept the change in your life and continue on full blast when able to. Listen to your body, I mean really listen to it. Rest when it tells you to rest.
      I understand about your past health issues. Its time to accept the new health issues, work hard to advocate for yourself-its a matter of living and existing, if you just wait it out and let others make decsions that you have every right to make, it won’t turn out very well.
      Keep a journal, it will help your dr and yourself when you go back and read past events.
      Remember, you have this site to vent without feeling guilty for doing so. Vent away! Find your limits, try your best to get control over your life, and most of all keep a positive attitude about it! Take care.

    • Anonymous
      July 24, 2009 at 9:09 pm

      i really appreciate you not yelling at me and making sense. i take all advice and ty to adapt it to my situation. i have other medical and mental issues in my past that weigh on my parents decisions. i also know that my mom wishes to think that this is not progressive. I was supposed to recover from GBS without complications. well if there are going to be complications i would be the one to get them. I had foot drop in both feet during GBS and had to have surgery. I had to live ina nursing homefor a year because i wasnt recovering well with the GBS. it looks like a nursing home is in my future. Myparents are getting older and wont be able to take care of me as this progresses. I dont want to go to a group home (someone suggestyed that) I dont know if they have ever dealt with a group home but from my experience( i workin the mental health field) they arent such good places. The nursing home i was in is in a small town outside of charlotte nc. They were very good to me and the staff even let me help out the activities director. THe only problem was that old people die. It was hard to lose people i saw everyday. I was the youngest person there. It was one of the only places that would take me with my mental health diagnosis and my mom said the other places closer lto home were dispicable. they sid i could come back anytime. Ido go and visit from time to time. not lately because i cant drive but i am going to try maybe this week. i prefer to stay at home as long as possible. My sister became a cna to help take care of me but right now Medicare says i dont qualigy for one because i and my family that can do it for me. so when the time comes my sister can be my CNA. I was paying her out of pocket when i was first released from the nursing home. I had appearently recoverd enough that i did not qualify for skilled nursing care or medicade anymore and the nursing home wanted all my assests un der their direction. I received ssdi and my mom btrought me hiome. well my hands and ey es are getting tired so thanks for reading JOJO

    • Anonymous
      July 24, 2009 at 10:50 pm

      I’m sorry if I sounded like I was mad at you in my earlier posts. I’m not mad at you. after re-reading my last post I am very sorry it did sound bad. It is frustrating that a doctor is treating you so badly by not giving you the treatment you deserve and by not listening to you. I am more mad at the docs for using your bipolar dx as a reason not to treat you. no one with CIDP or any other illness deserves to be treated like that. You have a real illness and you need treatment.
      I do not know your situation with your mom but I do hope and pray that she start to listen to you and realize you need treatment and a new doctor and if you can’t advocate for yourself then she needs to do it for you. just because one doc says he can’t treat you doesn’t mean another won’t.
      I do hope things get better for you and I pray that you get a new neuro and treatment soon.