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CC101

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About CC101

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  • Birthday 08/19/1989

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  1. Jackie, that was so clever and nice of you to dedicate your blog to your Mayo experience. I am sure your blog has helped many of us POTSies. It was incredibly helpful and enlightening to read your detailed experiences of some of the tests that they run. Both you and AKS have made it quite clear the experience is exhausting but like I said before, since I have only had the tilt table test and a stress test for the heart, I am sure I would willfully suffer through it all as well just to get some clean-cut answers. I have definitely bookmarked your blog so that I can refer to it in the future. It
  2. Also, I forgot to add, is this kind of visit expensive? I checked the online page of my insurance carrier and it says that the Mayo in Rochester is in their network so I am wondering how that coverage would pan out? Did anyone end up with a very expensive bill? Thanks! =)
  3. Hey all my fellow POTsies; I hope everyone is feeling okay today. I have not been active on the site for quite some time and I think it is because I have been in some state of denial ever since I was diagnosed and then for the most part ignored by my “team” of doctors. I tend to get all emotional when I start reading the boards on here as I am overwhelmed by all the similarities and then tend to focus on the fact that I am surrounded by people who cannot grasp even 1% of what I actually go through on a day-to-day basis. When my doctors are included in that mix it makes it even worse. I was dia
  4. Thanks Rich, I looked up your post and have always been interested in trying something like that. Good for your health all around! =)
  5. Monstrosity - I fully intend to request my doctor to our wonderful dinet site =) Peace - Thanks a bunch =) Fingers crossed that he will not think I am a whack job! The only thing with my neuro is he is of a different ethnicity so it is hard to communicate things sometimes (Can't ever just be perfect right? lol) .. but there has been multiple times I have been in his office for over 2 hours, not waiting, but talking. He never makes me feel rushed and is actually a joy to talk with unlike 99.9% of other doctors I have ever had. So, I am really hoping this works. Fingers crossed!
  6. Yes Lyn I very much agree! Linda, in my first response to this post I asked if you could maybe type up a symptom list and what you deal with most. I am very interested on what is going on with you as I have not had the opportunity to learn more about you yet =) I Hope you are feeling better today!
  7. Hi everyone. I hope you all are feeling as well as you possibly can today. I am going to attempt to educate my neurologist on POTS because he is my most favorite doctor I have ever had and he said he is willing to learn. I was just wondering if anyone had some recommendations to some links that would be best to take to your doctor when it comes to educating them on POTS. Reliable sources that they could trust, or things along that line. I would appreciate it so much! =) Thanks a bunch in advance & Big Hugs to you all! -CC
  8. Linda, your situation makes me feel so sad. I can relate to you because even though I am not treated like you, I am living in silence as I have no large family or no close friends that understand what I am going through. But I must say, I would rather suffer in silence than suffer from negligence and insensitivity from my loved ones. My heart goes out to you so much. You know what I would do? I would take what you have written here & print it out & give a copy to each of your family that you wish to be heard by. Or write a new long letter for each of them and pour your heart out with a
  9. So glad you found us Gloria, sorry for your circumstances but you are in the right place. I am shocked that you were not diagnosed after a TTT confirmed the hallmark symptoms of POTS. I would keep pushing until you get an answer .. possibly request another TTT. I am so happy to hear that you have a great support system, that is so important! Always know we are here for you as well =)
  10. I 100% agree Jangle. Taking it slow and working up at your own pace is CRUCIAL to us POTsies =)
  11. Rama this was incredibly generous of you to dedicate your time and energy. On top of this you answered all the requests of others on here since you are so knowledgeable on this subject. Thanks a bunch!
  12. Linda I am so sorry that you are going through such a hard time right now and I believe we can all relate to what you are going through. Never feel sorry for venting, it is healthy for the soul and is also what we are all here for; unconditional support. As I have stated in another post, something that helps me tremendously is writing anything and everything that I am feeling in a journal. I cannot explain why this helps, it just does, a lot. I have not been here long, so I would like to ask what diagnosis's have your doctors ruled out? What are all the symptoms you have when you eat? I am so
  13. Welcome Pam! I am sorry to see you here, but also glad to see you found the right place to voice your concerns. I did not even search for doctors as I found this site and just KNEW I had pots. I called my GP And did not ask, but told them to refer me for a tilt-table test. He referred me to a cardiologist he trusted and on the first visit I told him I was 99.9% sure I had POTS. He looked me over and said that I may very well be right and we scheduled the TTT Test and after that, I was automatically diagnosed. You have to be stern, and if you keep running into ignorant doctors that blame anxiet
  14. A post from Jangles inspired me to share this post with all of those who may not have read his post. I wanted to just make sure anyone who is interested in trying exercise receives the link to the site... I found an awesome site for beginners in which the first week includes only stretches to prepare your body. (is targeted for children as well). The PDF's I downloaded have a calender you can print out and follow. It seems like the perfect workout for us POTS patients so I really want to share it with everyone. It brings you slowly up the scale and I think it will be very effective. It include
  15. Jangle, I have seen so many testimonials on numerous sites on the benefits of exercise for POTS patients and I am surely going to get me a regimine going. I found an awesome site for beginners in which the first week includes only stretches to prepare your body. (is targeted for children as well). The PDF's I downloaded have a calender you can print out and follow. It seems like the perfect workout for us POTS patients so I really want to share it with everyone. It brings you slowly up the scale and I think it will be very effective. I just found it, so I am only in the first week but I Will d
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