Thanks to Tony L Sydney (member of AVM Survivors Community), for initiating this discussion "Helping Hands". It received several great responses in the AVM Community.
How about you? Is there someone here, or in your family or in your workplace - who has helped you in your journey? If your journey has just begun, is there someone riding the storm with you now, who you would like to thank?
We love to hear your stories.
Hi! Been a member for almost a year now and only when I decided on a second opinion that a team of Neuro and EMG experts concluded that I have no CIDP. They suspected that I may have MS but was also eliminated based on the spinal tap and EMG analysis .Actually I am supposed to undergo plasmapheresis but the absence of CIDP made it unnecessary and a waste of money. I spent a week confined just to undergo tests including cranial to lumbar MRIs with contrast only to find out that my spine is clear. Sadly I have to accept the reality that I may not stand or walk again (well that's according to the doctors). I'm just fortunate that I have my wife and kids in supporting and helping me cope in the challenges for the remainder of my life. However a renewed faith I believe will help me fight no matter how hard and how it takes to strenghten every fiber of my muscle. I may not have CIDP but since we all have similar symptoms, I will include you all in my prayers. More faith and power!
Hi All, Psalm 123....whatever we have we always have a lot of residual blessings and are better off than a lot of other people AND what about all those great things that have already happened in your life... make the most of what you have and do to the fullest whatever you are still able to and you may even forget from time to time what your problem is .. that gorgeous little lady at the shopping centre may even smile back.... lol... God Bless
My name is Donna Woodford and I was diagnosed with CIDP almost eleven years ago, but it took eight years of being sick before I received the diagnosis. By then I was both comatose and wheelchair bound. My parents and my children were very instrumental in helping me and continue helping me anytime I need it. I still remember during near the computer while my was doing her homework and she was helping me relearn how to spell and put sentences together. Still today, when I get nervous and confused during conversations with others, my children help me find the words to say when I can't figure out what to do. I have been a single parent since my diagnosis and they have never used that as an excuse to misbehave or hang out with people they shouldn't. I wish there was something I could do to show them how much I appreciate their love and support.
Your not giving in to this disease, accepting help from your family, shows your love and appreciation.( a hug and a thank you is always good, too) What treatment are you on? Accepting help is half the battle. I find myself not wanting to be a burden and taking on too many chores. Then I hurt and get frustrated which doesn't help anyone. Let the people who love you do what they can, it will make them feel better about themselves to be able to help. This disease is a very humbling experience. Peace Nancy
fmrcyote1 said:
My name is Donna Woodford and I was diagnosed with CIDP almost eleven years ago, but it took eight years of being sick before I received the diagnosis. By then I was both comatose and wheelchair bound. My parents and my children were very instrumental in helping me and continue helping me anytime I need it. I still remember during near the computer while my was doing her homework and she was helping me relearn how to spell and put sentences together. Still today, when I get nervous and confused during conversations with others, my children help me find the words to say when I can't figure out what to do. I have been a single parent since my diagnosis and they have never used that as an excuse to misbehave or hang out with people they shouldn't. I wish there was something I could do to show them how much I appreciate their love and support.
Hi Nancy,
I am on IVIG treatments every four weeks and it has been life changing for my symptoms. We have tried on many occasions to stop them and each time my symptoms return. I end up back in my wheelchair, pass out every time I stand and so many other symptoms, including some I’m embarrassed to mention, which makes it next to impossible to function everyday. As a single mom I can’t live like that. I have to say that I’m grateful that I’m a veteran because they give me my infusions and I don’t have to pay a dime. Each treatment costs nearly $10,000 and they cover it all. They’ve given me back so much more than I gave my country and I’ll never be able to repay that debt.
I was a single parent to my daughter for 14yrs before I got remarried, and there wasn't much "me time". It was hard enough(it also made my heart complete) I can't imagine trying to deal with this disease at the same time. You DESERVE a treatment that helps you and so much more. I get tired of having treatments every other week and have asked my nurses what would happen if I stop. They said I could become paralyzed and in a wheelchair, sounds like this is what happens to you. I have insurance that pays for most of the treatments we are indeed fortunate. You are giving back by talking of your experiences good and bad, that way the rest of us don't feel so alone. There is always hope when you can find at least one thing to smile about, no matter how small it seems, that is what you can offer and the world is a better place because of it. Peace Nancy
fmrcyote1 said:
Hi Nancy,
I am on IVIG treatments every four weeks and it has been life changing for my symptoms. We have tried on many occasions to stop them and each time my symptoms return. I end up back in my wheelchair, pass out every time I stand and so many other symptoms, including some I'm embarrassed to mention, which makes it next to impossible to function everyday. As a single mom I can't live like that. I have to say that I'm grateful that I'm a veteran because they give me my infusions and I don't have to pay a dime. Each treatment costs nearly $10,000 and they cover it all. They've given me back so much more than I gave my country and I'll never be able to repay that debt.