Should I be angry?

    • Anonymous
      January 9, 2011 at 5:09 pm

      First off, thanks for all your nice replies to my first thread.
      I was alone through the first year of this illness. And now I am living with my mother & extended family members ridicule me for it. Even though I was able to support myself with no job or spouse for 9 months.
      These family members that ridicule me are very wealthy people. They go shopping for frivolous things, and yet I have no money for medical care. I feel like if people won’t help me, they could care a less if I live or die.
      I also see all the people over 65 getting unlimited care. But I am not eligible for Medicaid, because I’m still fighting for disability (which I don’t know if it will ever be approved). Even though I worked & was financially independent for 20 years, I have no $ or access to health care. One illness can take it all away.
      I feel like God has forsaken me.

    • Anonymous
      January 9, 2011 at 5:54 pm

      I just wanted to let you know that it’s okay to be angry. Do your relatives live locally? Do they see how much they struggle? I ask because many of my relatives assumed that I was fine when I came home – but I still couldn’t move! I couldn’t hold it against them because they couldn’t physically see me.

      I am so sorry you’ve been going through this!

    • Anonymous
      January 9, 2011 at 10:01 pm

      Lisa – I can relate to what you are going through. Especially, for a person who is used to being independent. Many people, family or not, wealthy or not, only think in context of themselves. I may “appoint” all mankind to be understanding, caring, and helpful, and when they are not, I get “dis-appointed”, add in maybe frustrated, confused, anxious & etc.
      But Anger, is something that will not change people and did not help me get better ~ I’ve been there ~ and its just not good GBS medicine. I really had to dig deep within myself to sort out ‘my feelings’ especially that first scary and lonely year. I dis-covered I felt ‘better’ when I was doing something positive to help myself; even the smallest accomplishment helped.
      It has become my habit for the past 12 years now to accomplish ‘something’ everyday. The effect it has on me personally and those around me is amazing! It was, and still is, a difficult and often lonely journey but I rebuilt myself on what I can do, not what I can’t ~ or what others thought.
      I wish you well and hope you can get the help you need ~ maybe you are and just don’t know it yet ~ that’s a big ‘maybe’ but actually that’s what happened to me.

    • Anonymous
      January 10, 2011 at 12:42 pm

      One thing that might help is to get those family members that “don’t get it”
      to read some of the info posted on this site.

      It might make thme realize that you are sick and that you need help.

      Just an idea

      Keep up your chin,


    • January 11, 2011 at 8:09 am

      Anger sounds like an understandable reaction…..however, is it helping you at all?

      Tell your extended family about the seriousness of your condition, give them the resources to understand what you are going through.

      If they come around, great. If not, f*** them and move on, you don’t need them. Your only concern should be getting exercise, healthy food and back to life.

    • January 11, 2011 at 9:46 am

      Angry is OK to a degree for venting and telling others to get lost, but it’s no good for the immune system. As finances go, Medicaid will have to be your fallback position. Each state has different criteria, but you will be covered when your resources are gone. Then everything else kicks in like food stamps, etc., and you end up getting things that people with regular insurance do not get. If you’re religious, have a few chats to get things off your chest. I’m still angry, but what good does it do me? So I try to get around it. When you’re alone it’s hard. I learned one thing: you are in this fight alone whether you have a support system or not.

    • Anonymous
      January 11, 2011 at 12:34 pm

      I guess it depends on how anger is being used by the individual whether it’s doing that person any good or not. It doesn’t work for everybody.

      Simply put, anger has fueled my recovery from CIDP. Anger at my family for not understanding what my disease is all about and anger at my neurologist for his cavalier attitude and downright arrogance when I was at my worst. I was bedridden for months, couldn’t stand up at all, and nearly died in a nursing home. This was just 11 months ago.

      But I used anger to create an enormous chip on my shoulder once I finally started to feel better (plasmapheresis treatments helped me tremendously) and it only took me roughly 5 months to fully recover.

      Once I was back to full strength (which is rare in itself for this disease) in July, I set out to lose as much weight as I could so that I’ll be in the best physical condition possible if and when I have a regression.

      I’ve lost far more weight than I could have realistically expected in the last 6 months (110 lbs) and I’ve accomplished two nearly impossible tasks in less than one year. I feel better now than I have at any point in the last 10 years.

      Anger is not always a bad thing. Use it to motivate yourself and it can be a very powerful tool to keep you working hard every day.

    • Anonymous
      January 11, 2011 at 7:23 pm

      And it is taking too dratted long to get proper diagnosis and treatments! 12+months w/CIDP, tho I’ve not got ‘GBS? Maybe I did, and no medical professional caught on? Treatments are very similar tho..
      UNTIL I was diagnosed? Family and friends thot I was either crazy of faking it.
      So, what did I do the year after I was ‘diagnosed’? I printed off the NIH page on CIDP [for you GBS] and INCLUDED it into each and every Holiday card I sent! Coming from THE ‘NIH’? Added a tad of credibility!
      You are NOT faking it? Nor are you crazy! Should you be angry? Yes, no, and maybe. Yes: because you’ve got it, didn’t ask for it, but must try and ‘live?’ with it! No: for the same reasons as above. Maybe?: Learn to put what anger you have into any physical therapy and other therapies you can GET to get functioning BETTER! The ‘meds’ may muzz our minds at times, due to the pains? But WE STILL HAVE OUR MINDS! Put yours to WORK, as best you can.
      Further? There really are resources out there that could help you? It’s just a matter of knowing which questions to ask, and then? WHERE!
      Keep asking questions, and you will be surprised at the answers you can get! The more you know? The better you know what to do, even when you can’t ‘do’ much!
      Put your anger to work for you! Keep heart and faith in yourself. Hugs!

Should I be angry?

    • Anonymous
      February 29, 2008 at 5:03 pm

      I need advice & I apologize in advance if this gets long. I’m ticked off…

      Let me start by saying that we try extremely hard to treat Emily like she’s a regular kid. But we realize that she’s not & we’ve made some adjustments for her at school. For instance, she has to eat often…like every hour sometimes or she gets extremely bad stomach pains. We’re not sure if it’s CIDP related or what. Her teacher allows her to snack throughout the day as needed. Everyone at her school knows about her CIDP & they go out of their way to make sure that Emily isn’t treated differently but they also know that exceptions should sometimes be made for her without it being a big deal.

      That brings me to my question.

      Emily had gym today. They had a substitute gym teacher. The kids have gym twice a week – Monday & Friday. They usually run 6 laps around the gym during gym class & can sit down when/if they get tired at any point & any time they need a drink they are never turned down for one. After running all of the kids are allowed to line up at the drinking fountain to drink, if they are thirsty – which of course they all are.

      Emily told me today that the substitute gym teacher made them run 7 laps around the gym & refused to let her get a drink when she was thirsty. He didn’t take the kids out AT ALL during the 35 minute gym class for a drink. Emily said that during the last lap her sides were hurting very badly but she was afraid to sit down because another girl in her class did & she was told to “GET UP and run with the rest of the class”. Emily would never go against what a teacher told her & she’s not the kind of child to make waves – even if she knows that she needs to rest.

      It’s obvious that she was pushed too hard today. She came home & immediately laid down on the couch. She just told me a few minutes ago that her sides were still hurting.

      I still want her to be treated like the rest of the kids & I don’t want anyone to label her as a special needs child. I just want to make sure, that when they have a substitute, they are aware of her issues & will make concessions for her without making a big deal out of it. And this teacher was dealing with 1st & 2nd graders (Emi’s in a split). They should be allowed to rest when they need to & get a drink when they are thirsty. They are only 6 & 7 year olds!

      So do I make a big fuss about this? I want to talk with the principal, her teacher, the regular gym teacher & the Director of Athletics of the school district….and I’m so mad right now that I want to write the school board.

      So, am I right to make a big fuss about this?


    • Anonymous
      February 29, 2008 at 5:19 pm

      After 6 years of full time teaching, I teach part time now [that’s my third career: 25 years AF, Florida AB&T and now teaching]. I would definitely bring this to the attention of the school. It is SOP [Standard Operating Procedures] at our school to have a “sub” package that has all the information that the sub will need to make sure that everyone is safe. Some of the children are very allergic to bee stings etc.

      Your school probably has the same or similar arrangement. That said some of the “Sub” we have had didn’t pay attention to it and were never invited to sub again.

    • February 29, 2008 at 6:37 pm

      Kelly,That has happened to Kevin before too.* Because everything else runs so smoothly and the teachers and principal are so supportive, I chose to not make a big deal about it.* It was last year when we had that 100 degree weather and the sub made them run a mile run around the school.* Kevin tried to explain that if he needed to quit before the mile was finished, he was allowed to. The teacher pushed him to finish, which he did, but he paid for it later that night.

      The next day I went to the principal, and we decided that when Kevin is in a gym situation with a sub, he has to tell them right away that we have an arangement with the principal that Kevin can only do what he is able. If he feels the teacher is not receptive, he is to tell the teacher that he needs to go to the office and then the principal will explain the situation.

      I always TRY to go in with a calm mindset when something arises, because I do not want to get anyone mad. I NEED their support and help, and might need more later. I try not to burn any bridges. I am nervous about seventh and eighth grade, they do the mile run every day, and one of the gym teachers is super jock and the other one is named Cruella Deville. I can’t wait!
      Good luck! I hope Emily is not scared to go back to gym.

    • Anonymous
      March 1, 2008 at 1:22 am

      Kelly, Make the Fuss!!!!! If You don’t and that happens again next monday, it will be too late. I have made many decisions similar to that with my son, it is now at the point where I have to start in again with this years teacher. Not looking forward to more meetings, but if it helps my little man then I have to do it. That sounds to me like that sub should not be teaching younger kids, but older ones only. Make the Fuss!

      P.S. Kelly I sent you a pm.:)

    • Anonymous
      March 3, 2008 at 11:30 pm

      Make the fuss. Your daughter needs to have the freedom to do what her body needs and not get sick. All teachers should be aware of what her needs are and be willing to comply with them
      Beth, CIDP, Nov 2007

    • Anonymous
      March 4, 2008 at 4:47 pm

      Thanks for the responses.

      I did speak with the principal on Monday. I told her what happened & that I thought it was ridiculous to not allow grade schoolers to get a drink when they are thirsty & to not let them rest if they get tired. I told her that it’s not just about Emily & her illness – it’s about making sure that ALL of the kids are safe. I also told her that it’s not like 6-7 year olds would try to get out of doing something in gym class because, at this age, they are still just thrilled to be there. Kids don’t start trying to get out of gym until at least middle school.

      The principal agreed with me & told the gym teacher to write in his notes that any time a substitute is there that they must allow the kids to get a drink & to take a break if they want one.

      And Emily told me that SHE spoke with her regular gym teacher herself. She told him what happened & that if it ever happened again she was going to tell the substitute that she needed to go to the office to call her mom to take care of it. LOL..that kid!


    • March 4, 2008 at 5:56 pm

      These kids are so strong, I am glad she is not going to let anyone give her crap. It is good to learn that early on, I still haven’t. Go Emily!

    • Anonymous
      March 4, 2008 at 9:41 pm

      I had this happen with my son more than once. Medically both Emily and Kevin are eligible for a 504form which is basically a contract with the school that they will abide by the needs of your child. for instance Kendal needed to be able to go to the restroom often and usually immediately but there were teachers that told him he had to wait. also in gym he was told to run the mile and ended up in the hospital that night because of a sub not listening to him. Because kendal was not physically disabled he was not eligible for an IEP(individual education plan) but medically disabled he was eligible for the 504 which with Kendals he can leave his classroom whenever needed, did not take swim because they had to go across the street in winter to the community center and without supervision and if he had a seizure or slipped and fell on ice in winter there would be no help. Also this 504form helps when he is ill and not able to go to school for awhile the teachers shorten his workload and he is able to get a tutor at no cost to us to come to our home if it is more than a week or two. It doesn’t put these kids in special needs classes and they are treated as normally as possible but it is convenient when this can be handed to a sub to see what the limitations are and it only helps more when they get to jr and sr high where they have multiple teachers. Kendal is losing his sight so he has to sit in the front of the class and because of that form he is able to without any problems. Just thought I’d let you know of this option because it does make things very clear to the school staff. Kendals was sent to all staff at the high school with his picture because of his seizures and heart condition. Hope this helps.

    • Anonymous
      March 4, 2008 at 10:22 pm

      Thanks Jody.

      I didn’t know anything about that form. I’ll talk to the principal about it.

      Thanks again,

    • Anonymous
      March 5, 2008 at 5:46 am

      Emily cracks me up – what a terrific self-advocate! I can’t wait to see what she is like when she gets to be a teenager!

    • Anonymous
      March 5, 2008 at 1:37 pm

      Julie –

      Are you trying to jinx me? I KNOW I am going to have my hands FULL with that girl. I’m actually considering moving to Jamaica for those dreaded teen years, LOL.