lorrie Posted July 27, 2008 Report Share Posted July 27, 2008 For all of you who replied to my post about the shopping trip and the way my sister acted, I wanted to update you. She came to my house this afternoon to bring my daughter something and I asked her in for a chat. I asked her if she really thinks I am pretending to be sick and she said "yes, I do."I then reminded her of a few times she was with me when I passed out in public places and asked her if she thought that was make believe. She shrugged her shoulders.I told her I was done trying to convince her but that I was sad that there was a wedge between us when I need her so much right now. I told her about the episode of Mystery Diagnosis that is coming on Monday night about POTS and asked if she would consider watching it with me. I told her we don't have to have any further conversation on the matter after the show if she still feels the same way.She agreed that it couldn't hurt to watch the show and since she doesn't get Discovery Health Channel, she is coming to my home to watch it. I am feeling a little hopeful that she has agreed to at least watch the show. Maybe she will realize that you don't have to "look sick" to be sick. I hope the program is very informational and sheds some light on this disorder for her. I'm keeping my fingers crossed!!!!I am going to have the popcorn ready and make it a light hearted event. I don't want her to feel pressured...I just want her to get informed. Wish me luck!!!! Quote Link to comment Share on other sites More sharing options...
lorrie Posted July 27, 2008 Author Report Share Posted July 27, 2008 Sorry, forgot to tell you this one...my dad told me today that I would feel better if I didn't stay cooped up in the house so much. He is a work-a-holic and stays busy all the time and thinks working hard is the cure for everything. Well, after his comment, I pulled my mother aside (she is actually becoming a supporter slowly but surely) and told her about the Mystery Diagnosis show. She is going to make him watch it with her.I'm thinking of inviting all the non-believers over Monday night for a "get real" viewing of the show. I am going to tape it in case anyone misses it...lol Quote Link to comment Share on other sites More sharing options...
mkoven Posted July 27, 2008 Report Share Posted July 27, 2008 Good luck. If it were me, I'd probably prepare myself, though, for unanticipated reactions. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 27, 2008 Report Share Posted July 27, 2008 Lolo, it could go well, or it could go badly--like Michele said above, be prepared for them to respond whatever side of the fence they fall upon--or if they decide to continue to sit upon the fence.Nina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 27, 2008 Report Share Posted July 27, 2008 Oh, fingers crossed and little meditations your way that your observers will experience a moment of enlightenment! I hope at the very least it opens a little door of willingness to understand!As others said, don't allow yourself to feel personally bad, if they are unable to grow!best regards,tearose Quote Link to comment Share on other sites More sharing options...
lorrie Posted July 27, 2008 Author Report Share Posted July 27, 2008 Oh, believe me...I will be ready for anything. I'm expecting some to become enlightened and others to go away totally unaffected by the additional information. If it helps just one to understand better, it will be worth it.I promised myself that this the last intentional effort I make to reach them. Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 27, 2008 Report Share Posted July 27, 2008 You've done your part,good luck Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Good for you. Keep us posted Quote Link to comment Share on other sites More sharing options...
hollie Posted July 28, 2008 Report Share Posted July 28, 2008 I'm glad you posted this about the show tonight! I had no idea about it and plan to watch (and tape) it myself. I've already told a few others about it too. Thanks and good luck with your sister tonight! I hate to see anyone "cut" loved ones out of their lives. She'll come around... just give her time. How old is your daughter? I was thinking if she was old enough, maybe she could talk to your sister. Sometimes kids see the truth more than adults! I know mine do and they are only 3 & 5!Hollie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 28, 2008 Report Share Posted July 28, 2008 Good luck tonight. I hope it's better than you anticipated, but if it isn't, you know that your friends here have your back.Nina Quote Link to comment Share on other sites More sharing options...
turtlefairy5 Posted July 28, 2008 Report Share Posted July 28, 2008 Good luck and thanks for the reminder about this show! I'm going to try and see if my girlfriend can record it.Again, good luck. I wish you well with it.If your family still doesn't come around, I hope you can find the strength within yourself not to let it get you down.Be your own support.Amber Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 29, 2008 Report Share Posted July 29, 2008 So, how'd it go? Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 29, 2008 Report Share Posted July 29, 2008 I hope you had some bit of success.Silly me, we get discovery but not discovery health. I was thinking of you anyway!tearose Quote Link to comment Share on other sites More sharing options...
sheba Posted July 29, 2008 Report Share Posted July 29, 2008 Hi just watched the episode and it was pretty informative. So how did your sister feel after watching it with u? Quote Link to comment Share on other sites More sharing options...
lorrie Posted July 29, 2008 Author Report Share Posted July 29, 2008 Hi friends,I have good news...about 7 of my family members came to my house to watch Mystery Diagnosis. No one said a word during the show and I couldn't really "read" their faces. Anyway, after it was over, my sister who has been the hardest on me actually said she learned alot and after seeing Linda and Dan and what they went through that she believes I really do have a "real" sickness.I know this 30 minute show hasn't cured all the doubts and questions, but at least it opened up things for more educated discussion and my dad and sister actually asked me some well meaning questions. I think it opened their eyes a bit and has given them a foundation to build on.My sister is going to look at Linda and Dan's website and do some research of her own. That is all I could possibly ask for...just a stab at learning and being supportive.By the way, I'm still not going shopping with them and I'm okay with that and so is my sister. She apologized for the "stupid" remark she made about the wheelchair too.I feel like this has been a positive experience!!!!! Thanks to all of you for being here and for listening. I know I can count on you all when no one else is "getting it". Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted July 29, 2008 Report Share Posted July 29, 2008 Hi!I am glad that you got such an open response from your family and they all tried to watch it and learn something from it. It is great that they had questions and then on their own decided to do research! It really sounds like you did start to get through to them! Of course they still have a lot to learn and understand, but it sounds like many of them got over the first big bump of understanding that there IS something going on and it is not something you chose to have or make up.It is always great when others start to understand more!!! Congratulations!Hopefully your overall relationship with get stronger with this! That she apologized sounded HUGE (as far as a step in the right direction)!I fully understand the people in your life not understanding or trying to understand and then holding it against you. My sister and I hardly tallk etc. because she thinks that she is the only person with health issues, she just had scoliosis surgery- so, it is something tangible to her and others to understand. I have fully understood it from day one and do not dismiss it, it is a lot to deal with etc. But, the fact remains that all of our symptoms seem to be interconnected and she does not want to know this etc. And this means of course I just want to make her sick etc. But, I started to have very minimal "proof" to my thoughts when she had her surgery postponed due to the PICC line causing severe tachycardia under anesthsia, until it was fully removed. It caused an autonomic reaction due to the proximity to the vagus nerve. She has had these types of issues before as well. I really wish that my family would not be so standoffish to all of this and team together to figure it out, etc. --- Just wanted to let you know, I really do understand the frustration, and what all this can mean!Congratulations on your successful breakthrough!!! Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 29, 2008 Report Share Posted July 29, 2008 Hi,I am really glad that your sister and father had a change of heart. Maybe in the near future she will be you best friend! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 29, 2008 Report Share Posted July 29, 2008 Glad it was a positive viewing experience!! If you have not done so, lolo, get the NDRF conference tapes!!Though poorly edited (Keep graphics and text on screen too long and tapes end abruptly!!) they contain great information for family/friends to view as well. IIRC abput 6 or 8 top ANS docs.Grubb, Low, Goldstein, Streeten==died soon after that, Robertson, doc from Mexico and London...Might be leaving one out.Glad it went positive for you. Quote Link to comment Share on other sites More sharing options...
hollie Posted July 29, 2008 Report Share Posted July 29, 2008 Great show! I would LOVE IT if everyone I know could watch it! It hit SO close to home for me. I'm glad you have a huge step in the right direction with your family. I don't think you're alone in that. I know my sister and parents watched it too and had a huge learning experience! Thanks again for posting about the show!If anyone out there missed it... It's on again 8/2 at 7pm EST and 8/3 at 12am EST. Hollie Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 29, 2008 Report Share Posted July 29, 2008 Okay, I am not very technical, but why can't I find the channel? The discovery channel had a shark special on last night at 10pm. I don't have a discovery health channel, is that something I would need to subscribe to?any ideas?tearose Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 29, 2008 Report Share Posted July 29, 2008 Discovery Health is a separate channel. Not sure if you can just buy the program as a download (pod), or if you'd need to subscribe. It's part of our basic channel line up with satellite service, so I haven't had the worry about it. Nina Quote Link to comment Share on other sites More sharing options...
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