anyone going CIDP alone?

Dawn

Welcome to the group. This is a wonderful place to get help, ideas and to know that you are not alone. Feel free to ask any type of questions here as someone always seems to have answers.

You mentioned that you were working, that alone can be very exhausting try to remember to get rest. One of the ways I have found to get more rest is to buy groceries that are easy to prepare. Another way is to sign up for a meal program if available so you don’t have to cook. (meals on meals)

Do you have any close friends that can help you out?

Take care
Rhonda

hi dawn,

well, i’m not alone so in that regard, we differ… but i too have cidp– since dec 07. if you want to chat, compare notes– i’d be happy to be in touch…

check out my profile and feel free to be in touch.

sorry you are dealing with this.
alice

Hi Dawn,
My name is Dawn too! My 11y/o son has cidp. Is your doc willing to keep ivig as a treatment and stop the steroids? If you have the treatments monthly, it should help. They may even need to be closer, but you will have to try and see what works best. FYI, some people actually get weaker from prednisone as a side affect, not to mention other side affects. Good luck to you and write back often.
Dawn Kevies mom

Dawn have you looked into Social Security Disability Income? Its a separate process from just disability and you might qualify. There are other people on here who are financially alone, some with children. Keep this post up near the top until they come back around to the site. Someone may have some good advice for you, or at least a sympathetic ear.

to ague with your doc for 20$ buy “Pheripheral Neuropathy” from American Academy of Neurology, at [url]www.amazon.com[/url], is all there; treatments, diagnosis, test…

Hi Dawn! Do you not have any family members at all to help you? Oh boy would that scare me also. Certainly not being fun being sick and having to do for yourself with no help or support of any kind. These doctor bills are something else aren’t they? And it’s hard finding a good doctor that treats this stuff. Unless you travel where there is one that deals with this problem. I feel for you right now! Really do! A good friend of mine that has Lupus and much worse than I had to actually uproot themselves and moved to Maryland so they could get treated with their Lupus. If my mother didn’t need me around for she lives alone and has disabilities and is being cared for by me and my husband. My husband seems to get the brunt end of the deal caring for us both more than I am able to do. I am grateful to have him around. But it’s not easy on him and I hate having to put everything on him. If my mother was not around, I would be moving closer to an area like John Hopkins also! I would rather see those better doctor’s anyday than to see the ones in my town. I did get lucky and found 1 good one and he listened to me. Thank goodness he listened to me also! But I feel for you! I know this is not easy on you at all. Worrying about the bills and your roof over your head too! We have so many caring people in this world but then we have such a non caring world. I’m sitting here watching the TV and seeing families living in tents right now trying to survive because they lost their jobs or house got foreclosed on. Too much evil in this world! And yet our society see’s this happening and the Mayor in that town built tent city! I don’t want to talk about what my govenor did! He too just placed an area in Wake County and made it tent city for homeless people. Showed on the news a pregnant woman. She was renting a place and the owner foreclosed and they kicked her out of her home. She was due anyday and staying at that camp! And my governor just went out and purchased Grandfather mountain for 13 billion dollars! He took our tax dollars and bought a mountain. This just happened a few days ago~ He has had quite a few emails over that! They can take our tax dollars and buy a Mountain but can’t provide help for these families that need help! I don’t get it! 13 Billion for a Mountain and then get on TV and say we are broke! I wish you my best Dawn! Pleasure meeting you in here!

Hi Dawn,
I don’t know if I can help you enough because I was retired from my job before CIDP started, so I didn’t have to struggle to try to make it through a day’s work in order to support myself, BUT, I am a severe case being in a wheelchair and I live alone. I manage because I’ve hired a home care agency to help me with things I cannot do. I’m able to do my own cooking, cleaning, hygiene care, etc, so I am capable of living alone. And for some things I have to hire a handyman on an as needed basis. Just to give you an example of how well I can do things, I recently made a move from New York to Florida and I did my own packing and cleaned my former home by myself. My brother transported my belongings and I flew to Florida alone.

Don’t be afraid to look for another doctor until you find one who will listen and work with you. I went through five doctors before I found #6 who was my keeper. He’d listen and make things easy for me.

Turessa,

Never apologize for “whining”. We are here for you and we have all been there so certainly we can understand. Some times, we just need to vent our frustrations and disappointments. Where better than with family and friends and I hope you come to see us as that.
Wishing you well.

Hey Dawn,
I just wanted to chime in and say hello and to let you know that you are never really alone. I know a computer hardly takes the place of real human help but as you have experienced, the spirit in which everyone here provides support is invaluable and sometimes just enough to get us through a day. I hope you are able to get what you need in all forms and if not please don’t stop asking. If you need help accessing info on Disability or other services there is help available. Keep us posted and feel free to contact me via Private Message any time.
Be well and best wishes,
Linda C.

Hello Dawn,
I can’t imagine having this disease on my own. Thank you for sharing your concern…you really made me realize how fortunate I am to have the family and friends who care so much. What an inspiration you are! Hope you are doing well. I’ve been praying for you ever since you posted this forum…and will continue to do so….

Hi Dawn,
I’ve lived alone with my CIDP since 2003.I was working then but had to file for disability when it all got to be too much.I have a CNA now who comes in to help with the things I can’t do anymore.I get my infusions every other week and have a RN who comes here to infuse it.I know how scary it is to be alone with CIDP.I’m here if you want to talk more.Take care of you.