the irony of medical issues

[lindalu]

I was checking in on the website for the disease i have and there was a new post that i found such irony in. If you read through it, it could almost be written by a morgie.
Thought maybe Frankie might like to see how people benefit by having somewhere to communicate and how much having a "place" helps, no matter what it is you are dealing with.
It also gives me hope that someone will figure this out. The disease I have is RARE, yet, almost every day someone unravels the medical mystery and gets a diagnosis. I believe this will happen with Morgellons.
Linda


Post from Fabry website


Hello All,

I haven't posted in a while, but read your posts often. I started ERT several weeks ago(have had 3)and things are going great.

My son Travis, now 25, is still out in Ellensburg, WA. going to school. He is doing fine and of course still getting ERT. Our daughter Taylor is in Norfolk, VA working in the Cardiac Cath Lab at a hospital there. She has been getting ERT and doing well. She started ERT at the recommendation of her cardiologist due to lots of heart problems he strongly believes is from the Fabry Disease. Our youngest son Trent (21 years old) was recently tested and we were thrilled to learn he does not have the disease.

I think of all of you often. I will never forget when my family was finally diagnosed back in 1997 or 1998. We waited 7 years for a diagnosis for Travis and my brother Bill waited about 25 plus years to put a name to all his medical problems. It was only after our son was diagnosed that I could call Bill and say I now know what is wrong. .....
We posted on the website and checked every 10 minutes hoping for a response. It came and was the first time we were able to have contact with others that understood us and our symptoms. It was amazing. I think Barb W. or Chaz(who I miss dearly and kept me laughing everyday)was the first to respond. That was back when there were few of us on here. I imagine that everyone that first finds us feels that sense of relief as we did to know that others are out there and understand.

My brother and son truly believed for years that they were the only ones in the world with these strange symptoms. At least we could finally prove it was not "all in there heads" as many doctors told us.
I have rambled enough.

All the best to all of you.

Kathie

[tcmgpt13]

Kathie,

I am so sorry that you have to deal with morgellons on top of having fabry disease (I had to look it up as I did not know what fabry disease was). You seem to be a person who has taken this biblical phrase to heart: O, daughter, be of good cheer; for your faith has made you whole. Your letter rings with such a message of hope. None us here may be in good health, but I believe that we can be totally healed despite that. By seizing as much laughter and delight as we can in each moment of each day we become better and indeed are made whole. In striving to find happiness despite a bleak landscape I think new paths are opened to us in surprising ways. You seem to display that attitude here. And I feel you are right. In sharing our burden it becomes lighter to carry. Somehow, the world is washed anew as after a spring shower when the sun peeks out from behind that departing gray cloud.

Best to you,

tcmgpt13

[Franky]

lindalu thank you for reminding me why this site needs to be up. You know it very hard to keep forums in general positive and helpful (esp health forums). I really think we are doing a great job of keeping this place helpful and positive to people. Hopefully as we grow larger we can continue this.

[lindalu]

Franky,
Glad you got some "feel good fuzzies". I wanted you to see that no matter what thing you are suffering with, you often feel very alone. Having a place where others understand is a HUGE comfort. TC is right,
In sharing our burden it becomes lighter to carry.

It also helps to know that, despite what the "organized medicine" group says, it is NOT all in your head. Doctors have NO IDEA the damage they do by dismissing symptoms and letting a patient know that they do not believe them.
Thank you for providing a place for us.
Linda