EarthMother Posted November 12, 2008 Report Share Posted November 12, 2008 I didn't realize that there were so many personal YouTube stories about people with POTS. I really liked the idea one gentleman had to show his heart rate watch while he was standing and sitting down. In fact, it gave me an idea today to throw my hat into the ring and do my own version of a POTS demo. I figure the more we talk about it ... the more people will know.I didn't use a script .. which you can tell But I did enjoy the chance to tell a little bit of my story.Peace.~EM Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 12, 2008 Report Share Posted November 12, 2008 wow....that was REALLY poignant. it's simplicity & "to-the-point" nature, combined with your grace & ability to give accurate detailed information in a way that informs & explains without overwhelming makes/made it a really good & informative clip. the graphic illustration - combined with the fact that your HR response to standing is so textbook (something that's not the case with every individual) - is great too. i remember when i was a research patient at vandy being able to see on a continual basis the dramatic HR (& for me BP) changes with changes in my position was very interesting and, i suppose in a way, validating. and while my parents didn't have doubts about my diagnosis/ health issues/ symptoms by then, i think it helped to further illustrate to them what was going on in my body pretty much every minute of every day as my changes were almost as dramatic even with "just" sitting upright from lying down, & then more so with standing (until i would at times pass out that is ). along the lines of which i will say that i noticed your recognizable - to those of us who "get it" at least - putting your legs/ feet up & even leaning over a bit as opposed to sitting straight up when you were "seated". that's probably the one thing that, if you were to ever redo your video, might be worth pointing out to those who are watching it for educational purposes, as i'm guessing your "sitting" position was/ is not an accident & in fact makes a big different in how you feel. that said it is great as it is so certainly does NOT need to be redone; i really was/ am very impressed & could truly see your presentation as one that could be helpful not only to patients' family & friends but also to less-informed medical professionals (&/or professionals-to-be, i.e. med/ nursing students). and i'll be honest that i'm generally one who critiques pretty heavily, i.e. i don't hand out complements all that lightly .since i'm no longer a member of "club POTS" so-to-speak & thus have a lot of other things that need explaining beyond orthostatic intolerance &/or heart rate variation (as well as less consistency in the direction with which my heart rate varies), if i were still a fellow POTSie i'd be seeing how to make/ get a copy of your snippet to share with many of those in my life. that said, with your permission (although i suppose it being on youtube sort of implies the okay to share?!) i may still want to share it with a few people i know who might find it helpful (and who aren't members of DINET).so...kudos & thanks for sharing. and by the way, while i KNOW that it has absolutely NO bearing on how you feel at any point in time, you're quite beautiful . and it's always nice to put a name with a face. melissa Quote Link to comment Share on other sites More sharing options...
Simmy Posted November 12, 2008 Report Share Posted November 12, 2008 Very nicely done. In my opinion, yours gets the Oscar for best POTS video on the web, best graphics and best supporting puppy. I did not give you best actress because people need to understand that you were not acting. You demonstrated what "normal" is like for us.Simmy Quote Link to comment Share on other sites More sharing options...
mountainsunflower Posted November 12, 2008 Report Share Posted November 12, 2008 I loved it! Very well said. You are a great public speaker and explained things perfectly. Thank you so much for sharing your story! It is a great idea to get the message out there. take care Quote Link to comment Share on other sites More sharing options...
dezyrae2 Posted November 12, 2008 Report Share Posted November 12, 2008 Amazing job. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 12, 2008 Report Share Posted November 12, 2008 WOW...thanks for making this...to the point but powerful...and so poignant with your dog at the end reaching up with the paw. It made me cry. Thanks for making this and i am going to share this with others.Sophia Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 12, 2008 Report Share Posted November 12, 2008 Thank you! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 13, 2008 Report Share Posted November 13, 2008 oh yeah...how could i have forgotten to mention your precious canine companion in my earlier reply?! such a testimony/ illustration to how the animals in our lives often "get it" sooner &/or better than some of the people. i know my kitty (who everyone swears is actually part dog) is always the first one to know when i'm not doing well....sometimes even before i know myself! melissa Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 13, 2008 Report Share Posted November 13, 2008 Melissa my dog like cats are the same way.But the black dog at the end of the video was just TOO PRECIOUS! and touching. Quote Link to comment Share on other sites More sharing options...
Megan Posted November 13, 2008 Report Share Posted November 13, 2008 Thanks so much for sharing. I teared up a little at the end. Even without a script I think you explained things really well! Out of curiosity, do you always sit with your legs curled up next to you like that? I think I remember a previous discussion on it, but I almost always sit with my feet pulled up next to me like that. If I don't, I lose feeling in my legs.Meg Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 13, 2008 Report Share Posted November 13, 2008 I meant to add I need to lie flat on my back to get the HR to drop 50 beats or so....and sometimes I have to elevate my feet if I feel the blood draining...I never had the flexibility to sit with legs sideways but we all find what works for us, don't we?Interesting. I raise up on my toes a lot when stuck in grocery line or squat down to fiddle with shoes or pretend to look at rag magazines. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted November 13, 2008 Author Report Share Posted November 13, 2008 A deep heartfelt thanks for all the lovely comments. Sunfish you brought me to tears. After spending so much time isolated because of my illness the idea that we DO infact recognize ourselves when we see a familiar posture touched me deeply.Being around only able bodied people, I don't ever see 'myself'. It makes DINET such an important place for me. Thankyou.As for how I sit ... yes, I always sit with my feet up, usually underneath me. When I could work, I would sit cross legged even in the board room chairs. Quite a spectacle, I suppose. I think our body's just 'know' what to do ... when we can keep our mind from thoughts of self-consciousness or social expectations. Even my youngest (12) sits at school with her legs pulled up and I wonder if she too is compensating.And for those fellow animal lovers ... that is Taco in the video. Doing what she does best. She is about 8 and is one of two rescue Xolos (mexican hairless dogs) that are with me 24/7. I often would take Taco to the office with me when I worked. She was a calm, steady reminder in an otherwise chaotic fast paced office. Any time my body would start shaking, she would come up and put her head underneath my hand ... as if to say "Hey, while that hand is shaking, why not put it to good use by petting my head?"I am often amazed by the long hours they put in by my side. Especially on the days I can't get out of bed at all. We have a big backyard and they have a dog door to go play at any time. But they prefer to be with me. I suppose they think its their job. LOLMy other hairless adoration is also on youtube. A video I did a while back on how to toilet train your cat!Warm and gentle hugs.~EM Quote Link to comment Share on other sites More sharing options...
Maxine Posted November 13, 2008 Report Share Posted November 13, 2008 EM,That is one of the best videos I have seen on POTS/Dysautonomia. I sent it to several people who might understand. There are those of course that will never understand, and I avoid trying to make them understand because it's too frustrating. However, I have one sister in law like this, but I sent it too her anyway. I'm very curious if she'll come around after seeing this. It's easy to understand, and explains very well how taxing it is for us just to stand up and do things like brushing our teeth.I was also very touched by your doggie. I have two cats and a dog. My Dog has always been by my side through this. I removed some of my post---as I think a lot of you already heard the "India story". Your dog is so precious, and you can tell she is full of love and joy.That is very interesting on the sitting position. I rarely sit with my legs on the floor, as they have always been curled up with me on the couch or chair. When visiting someone, or I'm out somewhere without having this option to put my legs up I really notice a difference. Very interesting, and I have not really thought about this until seeing this posting.Thanks for sharing your video with us------it was amazing!Maxine :0) Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 13, 2008 Report Share Posted November 13, 2008 Hey E.M., so cool to SEE you! What a great idea to illustrate what's going on and your extremely calm manner and voice negate the perception that POTS patients are simply nervous or high strung. Great work- woof, woof!Julie Quote Link to comment Share on other sites More sharing options...
icthus Posted November 14, 2008 Report Share Posted November 14, 2008 That was an amazing video. It was so encouraging - as it was the first time I have "seen" another person that has what I have! You are amazing!Sincere and heartfelt thanks. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted November 14, 2008 Report Share Posted November 14, 2008 Great job! Straight to the point and illustrates everything well! The pup is too cute! Quote Link to comment Share on other sites More sharing options...
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