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!

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.

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,

Rhonda

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.

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.

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.

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!

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.

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.
Dawn

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.:)

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

Boy,
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!
Dawn

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.

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!