Ryan82. Hope it is a better day.

Ryan.

Got up and wanted to write a note hoping that it is a better day for you. Know what you are going through is difficult and scary. Use your energy for "self repair" as body and mind have an amazing " work around " ability to adapt to things that go wrong. Keep us updated on advocacy for care and search for providers who will listen and work with you.

We are here to watch for progress and assist if we can. Take care of yourself. Call if you need to talk as I know writing text is real problem.

Dan / Seattle

[Ronwyn]

Still no help yet on waitin list but here in Australia is hard finding someone who knows more than I do , so I just take it one day at a time

[Hidden in reply to Ronwyn]

Ronwyn.

I wish there was not a waiting list for help in Australia. I really wish you did not have to be on it.

Your last statement about "finding someone who knows more than I do" should be presented as a question at the FND conference in Atlanta. I will include it in my list of questions with your permission.

I remember one doctor telling me not to be a medical mystery. He followed that up by saying it may be better not to know what I was dying from.

Ignorance and apathy by providers of medical care is the equivalent of taking the easy way out. Based on the stories from new patients joining our community, I feel like the pattern is self reinforcing.

I agree to the "one day at a time" approach, it's just that each new day gets me a bit more riled up about the lack of care.

Hope it is a good one today. I really do hope. Looking to meet these providers in Atlanta. Time for a chat...

Dan / Seattle

[Ronwyn in reply to Hidden]

Yes you are welcome to use my comments Ryan as I would love to know what the reply would be to that question. I've had FND for around 7-8 years now after many hospital addmission and I've lost count on blood test and scans. I do know how ever my symptoms are getting worse with each relapse .. although I take it one day at a time I would be lying if I didn't say there where many days I wanted to just not wake up. My kids are what keeps me fighting this horrid disease and the hope that soon we will get answers. I have gone over my blood tests many many times and found so many thing I want to question like my high rheumatic factor or why I get bursitis in my left shoulder or why I get influmation in my spine , why my speech comes out jumbled so many things now I'm not a doctor but if I was having a patient produce so many symptoms I would do what ever I could to find out why and how come it happens.. I seem to go back into a relapses in the hotter months and speed almost 6 months of the year sick , now we all keep hearing it's in our head well I know my body well and I do know if it was in my head why wasn't I cured the day the neuro told me that .. I'm not taking that as an answer anymore and in my opinion FND stands for FIND NEW DIAGNOSIS 😭😭

I wish you all the best at the conference and hope and pray that you will get us all some sort of help or just to make someone listen to us instead of treating us like we have a psychological dissorder

Cause I know I'm not making this up nun of us are why would we I just want to be normal or atleast treated 😪

[Ronwyn in reply to Hidden]

Lol sorry dan I read the messages all wrong and replied to Ryan haha anyway my response is in the replys under this one and yes I would love for you to use any of my responses or posts anything to help get us listened to ,

[Hidden in reply to Ronwyn]

Ronwyn.

Thanks for being able to laugh at my trail of errors. I laugh all the time at myself. I keep the family chuckling too because things either get done backwards or something goes wrong.

Trying to get back going after falling in the movie theatre on Saturday. The leg lost sensation on the steps down to our seats. It did not come down where I thought it was and all the way to the floor I went. My pride wasn't hurt as much as it was the struggle to get all 6 feet and 200 pounds of me back into an upright position. As they say, you can't make this stuff up. Wrote the doctor and told her about the injury by saying its just another day with my neurologic nemesis.

Take care. Thanks for writing.

Dan / Seattle

[ViktoriaC]

Ryan82, I would just like to second what Dan has so eloquently written. It's so difficult to stay positive when your world has been tipped upside down and given a real shake but please know that someday the storm will pass and, until it does, there are people around the world who will hold your hand to guide you through.

I know it seems impossible, and there will be times when you will think you'll never make it through, but each and every person is stronger than they will ever know, including you. On those days when you feel your strength is fading, borrow some from the inspirational people like Dan to help you push through, as one day you will be that person who lends some and pays it forward.

Wishing you well and sending hugs from Scotland xx

[Hidden in reply to ViktoriaC]

ViktoriaC.

From my favorite land in the world comes a poet like you!! If only I could figure out how to print what you wrote, then I would hang it in the gallery of hope splashed across the heavens of our universe.

You are a way forward for us all. I must have known your message was out there last night when my wife and I picked up our daughter at the airport after visiting her sister in Chicago. She has the diagnosis too and is not supposed to travel alone but had insisted. She suffered attack on the plane and they wheeled her off in a chair. When we got to her, all we could do was hold and comfort her and remind her this too would pass.

Thank you for the strength through your inspiration to have been there for her and just be strong. That made all of my struggles evaporate into the darkness.

With sunshine from the rainy city of Seattle.

Yours truly

Dan

[timtim99]

Thnks so much Dan. I appprecaite u takking time to offer ur suppport and advice..