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Hi everyone,

Our whole family is being interviewed for an interview (like a 30 min segment) and most of it is about a family. Our two blended families (me and my hubby's family) and the other side (his X-wife and new hubby) have decided to raise ALL kids on one family. We really love them equally and we are together so much it didn't make sense any other way. So my hubby and ex-wife have 2 together, I have 4 w/ my ex husband and Ex-Wife and new hubby have two year old twins. 8 all together. This is always quite gossipy to people and fascinates people but we started it as a way for the kids to all benefit but we've all grown so close. Even, guess will call her the X but sounds wrong) and my hubby feel like brother & sister- kinda how their marriage ended and began. X's hubby really reminds me of my bio brother who is 2000 miles away from so we bonded quickly- and X and I bonded and we just say we are sisters because we are really, MORE than friends- we are raising 8 kids together. Well a little bird told a little bird who told a little bird with a HUGE mouth!!!!!

We got most everything done Thurs. but I was having an off day- no balance and could not enunciate clearly so they are coming back to interview Me with Rob (Ooops gave that away ) and me with Becky (Ooops-that too. Most of it will family oriented but there will be 10 min to talk about my illness/s. what should I say to get the most attention. I have a very aggressive autoimmune deficiency, autoimmune mediated autonomic dysfunction neuropathy, connective tissue- thought to be EDS, and P.O.T.S- and lots of secondary things because of these. Postconcussion disorder (now 12 I think concussions), thyroid/pituitary issues, kidneys not working right which I'm sure explains why bladder not working right, etc. how would you use that 10 min.

This newscaster is super nice so I'm going to ask her to do a whole health segment (they do one every day on her morning show) so if that happens, I will let you know. But if we are getting ANY publicity, that's great and station manager feels other ntwks regionally pick it up because we are very unusual. Ex- wives, best friends- and her and her husband just put a benefit on for me on Sat!!!!!!!

Thanks

J

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Wow!! That is so cool an exciting! I would probably say all your syndromes etc.,a little on how it effects you and your family, and definitely pick one to say the list of most common symptoms. I bet there are a lot of sick people with dysautonomia out there that don't know what's wrong with them, like I used to. If I had heard a list of symptoms I would have been able to know what I have. Let us know how it goes! :)

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I think it is great that you and your whole family get along so well, and care for one another; that is very admirable. :) I would mention that some with dysautonomia also can have hills and valleys blood pressure, because I was hypertensive, so that is definitely different than the norm. What is normal, anyway? :rolleyes: Diagnosis is made with a simple TTT. Some have more neurological issues, some have more heart/vessel issues, some have connective tissue disorders, like EDS, and some have autoimmune issues, like you...so we are all different, which makes it harder to diagnose. We all have problems with tachycardia, hypovolemia, visual disturbances, GI issues, and GU issues, too...along with all the quirky symptoms related to the peripheral nervous system, parasympathetic, (rest, restore) and sympathetic, (fight, flight). I guess that is it in a nutshell...lol. ;) I'll be praying for your success in the interview...God speed!!

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i was a reporter once upon a time and the best thing to do is to prepare a little with and outline of what you want to say. make bullet points that are reminders. this will prepare you to get more information in a shorter time... if you improvise there is a danger of getting off track and not mentioning everything you want. Also if you forget something just take your time and pause, it looks smarter than most people realize and always better than using "um" 20x. Good luck!

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Interview went great- it was much more focused on our blended family dynamic ( how often is your hubby's ex-wife your best friend) but we make it work- initially for the kids and it was important that none of them- there are EIGHT!-feel less important than anyone else, I'm fortunate enough to be blessed with a wonderful woman who just happened to be married the first time. I always say they were two kind, living, loyal people just. It right for each other- probably knew it all along- but both too kind to say a word before "I Do".

Anyway, I did get to bring up some general symptoms, explain what the term means and advise that many doctors will NOT be familiar with P.O.T.S and you must educate yourself with any part of your body, but especially your autonomic nervous system, She is also very interested in giving me a full morning news segment to talk about this and I thought "Well, this is a good start" for education!

I also had my benefit on Saturday night and was so overwhelmed.... I have only lived here 4 years and was always busy and never seemed able to form close ties- anyway, I was so amazed at how our community cane together, with so many came to support us. They raised more than $17,000 that night. I am still overwhelmed.

Jen

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Wow...That was an amazing benefit!! Rich had a great idea for talking points when you have your interview for POTS!! Wishing you the best :)

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That is great! On both fronts - with your amazing family dynamic (talk about a great human interest story!) and with the dysautonomia awareness. Feel free to throw in that POTS is usually not caused by deconditioning :) I keep hearing people tell me that's what their doctors think these days. Anyways - congrats!!!!

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