Family-there’s nothing wrong with you

    • Anonymous
      July 22, 2008 at 1:56 am

      I called my brother earlier to ask about plasma TV’s and he said some ugly stuff. I had told him in the past I was on chemo for CIDP-that’s what I call IVIG/Methotrexate. He just blasted me saying he’d talked to a cancer doc/some pharmacists and they’d never heard of anyone getting those kind of drugs like I did for anything. I needed to stop all the un-needed drugs, take vitamins and there is absolutely nothing wrong with me. The drug companies and doctors just want my money. Oh, yes, get that port taken out-no one keeps one in….

      Because of my fatigue and shock I sat on the sofa and then called a really sweet friend to talk it out.

      I know my brother’s a jerk but it sure hurt.He was really toxic. I’d e-mailed him, my sister and others over the years with some updates explaining about CIDP, IVIG and what happens so he knows. Several of you have written that family/friends have said things just as badly to you. I haven’t seen my brother but once in 10 years.I guess I’m just amazed at the level of his stupidity.

      Enough said.

    • Anonymous
      July 22, 2008 at 3:18 am

      Limekat, I’m sooo sorry to hear the lack of support for you from family members. I know what you are feeling, have been there. You can’t force your brother to change, he will come to understand in his own time, or when his health is turned upside down. Just know we are here to support you and listen when you need a friend. Big Hugs!!! Take Care.

    • Anonymous
      July 22, 2008 at 5:25 am

      For someone who isn’t a doctor, hasn’t seen you in ten years and doesn’t talk to you often your brother certainly seems to be an expert in your disease and how to treat it. Grr… I am sorry he doesn’t understand. This is a rare disease and many doctors and pharmacists may not have even heard of it. It would be better if your brother got your information from you instead of outside sources that are less educated.

      Hang in there – I responded to your PM too Evy. We care, we understand, stick with us kid. 😉


    • Anonymous
      July 22, 2008 at 7:43 am


      After reading how your brother responded to you when you seemed to reach out to him on the TV thing and your treatments, It made me realize how in general, most people try to understand or listen at some level, but don’t focus enough to get the real picture. My Three Siblings have a touch of this reality condition.

      I have discussed or told many people I know about my condition. They really don’t listen. The very next time you see them they ask how my back is doing or about something not even close to what they are told. Many are consumed with themselves and offer only seconds of real attention when being talked to. Other don’t believe what they are hearing and their internal mechanism is to suggest alternative cures or vitamins. I personally avoid people who don’t engage in conversation. I won’t waste my precious time on them. It doesn’t matter who they are. They are out for themselves only!
      Family or not, its a two way street.

      They just don’t get it or want to get it.

      I am sorry about the hurtful words and the way that made you feel. That is why we are all hear.

    • July 22, 2008 at 9:37 am

      Hi LimeKat,
      So sorry about your brother. I have issues with my brother too
      (personal, he is actually very good about Kevin) I have resolved to stay my distance and keep it light. When it is their time to meet with God, he will play them a little video making them spend their eternity in a little room reviewing the hurt they have caused others. This will be their pennance, spending eternity watching their shortcommings on earth.

      It is best to just stay away from toxic people. They offer you no kindness or help and irritate your situation. In the future, when you need help with you TV, come hear and ask questions, I am sure there are plenty of guys that can help. Have a better day today.
      Dawn Kevies mom

    • Anonymous
      July 22, 2008 at 10:37 am

      Hi Limekat,

      As you can see, we all have someone like your brother in our life. Three of my four brothers have absolutely no interest or understanding of my illness and how it impacts my life. I am like Tim. Family or not, I don’t want or need that in my life so I have distanced myself from them. They don’t even get why I have done that, but negative energy just makes me feel worse, so I have chosen to surround myslef with people who are supportive and understanding.

      Feel free to keep coming here. We all “get it”!

    • Anonymous
      July 22, 2008 at 12:52 pm

      You know what? You don’t need him in your life. How DARE he say those things to you! If you haven’t seen him in 10 years & he treats you this way then I say you wash your hands of him & turn to people who are supportive to you. You don’t need some toxic jerk in your life making you feel bad!

      My advice is to lose his phone number, email address & home address and then if he ever contacts you don’t answer the phone, delete the email (before reading it, of course) or throw his letter right in the trash can.

      You deserve to be treated better. Don’t let ANYONE ever make you feel like that again. I don’t care if they are family or not. Take a stand & get that toxicity out of your life. You don’t need it!

      Kelly (steaming mad for you!)

    • Anonymous
      July 22, 2008 at 2:01 pm

      I agree with everyone else, the last thing you need in your life is a toxic person and I am so sorry that your brother would be so unsupportive.

      Its funny because I was just telling a friend of mine the other day that one of the “side effects” of my CIDP is that I don’t have any patience for unsupportive people or small talk with acquaintances. I’ve found its best to focus my energy on positive supportive people in my life and let the rest fall by the wayside. Please know that there are a lot of great people on this board who both care and understanding where you are coming from. Focus your energy on the good! You deserve it!


    • Anonymous
      July 22, 2008 at 3:27 pm

      Hi Limecat-I am in total agreement with everyone else. Just wanted to add that unless a person, family or friend, has a chronic, on going, life alterating disorder like you, they are never going to understand. I bet if your brother walked a mile in your shoes, they would be mighty tight for him!!!

      I joined onto this forum in June, and I can’t tell you how much positive support I have gotten from everyone here that I don’t get from my own family or friends. What an amazing group of people here that you can vent to, laugh with, learn from, and turns yours negatives into positives.

      My girlfriend of 36-37 years, who I do dearly love, finally last week, when she was over, admitted she doesn’t truly know what I am going through. But her next sentence was why we have been together so long,” But I love you and I will do anything to help you anytime!” She keeps me grounded and we support each other through everything. And Limecat, if that friend you called after that rat of a brother, helped you feel better, stick with that friend and with all of us…..anytime, someone is on line to talk to.

      All my best, Emma

    • Anonymous
      July 22, 2008 at 10:42 pm

      Limekat, the last two sentences of your post say everything that needs to be said.

      The orthopaedic surgeon who worked miracles (IMO) when he performed my spine surgery, told me that he doesn’t believe in chronic anything when I told him that I have CIDP. Is he arrogant? Sure he is. Is he uninformed about many things other than his narrow area of specialization? You bet he is. So, I’ll just use him to do what he does best and leave the CIDP diagnosis and treatment to others.

      Surround yourself with people who are empathetic and who have a positive outlook. I’m very sorry this negativity is coming from a member of your family. I know that hurts.

    • Anonymous
      July 22, 2008 at 11:44 pm


      As you can see there are alot of us who have the same problem so just ignore the ignorant comments as they are not useful to you. There are those who will not every understand unless they are in your shoes. I have not seen my own brother for at least 10 years and my sister-in-law was having a fit as they are finally coming to visit and there was not enough time for her trip to go to Kings Island, See friends in Kentucky, go to a wedding in N. Carolina and come and see me the caregiverand my husband too. So I told my brother not to come since he had to cram more into his trip than what he had time for he could come another time.

      Well I think he was surprised but tried to still come. So after changing dates on me 3 times I said ok . They will only be here 1 1/2 days and I hope they feel like **** (excuse my language) after they see my husband. I have had so much company and most of the time I have enjoyed it but I do feel people should understand that this is hard both on him and on me and means I have to cancel things to do when we get company. I am gracious to others and feed them, entertain them as we have a boat , show them around, and of course clean up after them when they leave for the next visitors. Then my sister-in-law e-mailed me that I should try epson salts for my husbands feet for his fibromialgia(sp?) Whew. I wrote back what he does have and explained it again as I did before. IN DETAIL If it was not for the fact that I would like to see my brother I would have still said no. So it is not worth it to get upset and I have found many people who think they know all kinds of things to take for this disease, even my own children who live far away do not always agree with me on things but then they are still young and have not lived thru what we both know is so hard to take for both the patient and the caregiver.

      It is very hard on me as the caregiver to see my husband so down and so moody and I cannot do enough for him. I am so proactive and he is not but I think that is part of the process. I cannot say I would not want to just give up if I was him also. But I just keep fighting for him.
      So please take the bull by the horns and be strong . You deserve to listen to those who will help you through this and ignore the ones who seem to know everything but really know nothing. You might try asking him if he calls you when he got his MD license.
      God bless you

    • Anonymous
      July 23, 2008 at 12:28 am

      Thank you for your replies. Both my sister and brother live 300 miles away. Last year about 3 weeks after our dad died my sister by-passed my city to go an uncle’s birthday party she hardly knew.She knew I was upset about dad but didn’t stop here.She’s afraid I may ask her for help and she’s a mental health social worker.Go figure……If she asks how I am I say just great.

      Family can be weird. I don’t interact with my brother-write some and one birthday call a year.Needless to say he has put all of us through the ringer with his severe and numerous problems-must have a short memory. Who would want to have CIDP and infusions 6 times a month for over 3 years.

      It’s amazing how most people are in their own bubble. It used to be when someone got sick, needed help or had problems they’d show up at my house. I was always ready to help and never expected anything in return. Now I’m too tired.

      I use my energy to do things I enjoy and get together with some fine folks too.

    • Anonymous
      July 23, 2008 at 8:19 pm

      Limekat-those people came to you for help because you always helped them, bet you are a good problem solver and nuturerer…and now that you can’t help, those people are no where to be seen? Happens to all of us, too bad isn’t it?

      Your last sentence was basically what my one friend always preached to me: ” save your strength for things you like to do.” I lost her to lupus a few months ago, but I have never forgotten those words.

      I struggle to let the little things go, but I am getting better about it each day. Does it hurt if the vacuuming doesn’t get done today? I like a clean home, but housecleaning is NOT on my list of favorite things to do, and it is one of the chores that zaps my energy the fastest.

      Take good care. Remember what you use your energy for……..