Rachel

Thank you everyone for your kind responses and advice. At this point our plan is to call the office tomorrow. My husband is going to take care of this for me. I'm just too tired and brainfogged to deal with it properly at this point. It is hard for me to talk on the phone - conversation goes faster than I can think. I like being able to type because I can take my time. Anyway, my husband will call, speak to the office administrator and see if he can get things straightened out. We will see how that goes and then I will consider writing/faxing the doctor if need be. Meanwhile, I'm also going to look into some other doctors in my area. Maybe I'll be able to find a better doctor, or a good doctor that also has helpful staff memebers. I'll let you know how everything turns out tomorrow. Rachel

Congratulations, Megan! Thanks for sharing the great news! Rachel

Em, I did a search and found some info. I'll still need more info, but I'll have to search more another day...it is bed time! Thanks for the help, Rachel

Emily, Thanks for your support. Yes, I've heard excellent things about the doctors at this office. I've heard from people with POTS who have been very pleased with the care they received there. They've been going there for years. I've also heard good things about the nurses and techniciains. I've never heard anything about the receptionist, though...hmmmm. Maybe good things only start after you get back into the testing and exam rooms! I might just have to turn everything over to my husband and let him fight this battle. He said he'd call the administrator on Monday (of course this had to happen over a weekend!) and see what he can do to straighten things out. I'll keep you posted. Rachel

Hi everyone, I just want to cry. I got a letter in the mail from the administrator of a doctor's office I am (was) supposed to go to. They cancelled my appointment on me. I'm so upset because I desperately need medical help. One of the reasons I was glad to move out of Alaska was that I would be near good medical facilities again and could get adequate care. But maybe that isn't going to happen. Here's what's been going on: Last week I called the doctor's office and left a message for a nurse to call me back. I said that I had some questions about tests. On Monday of this week a receptionist called me back, only she didn't identify herself as the receptionist. And so I assumed that she was a nurse. She got kinda freaked out that I was in a wheelchair and couldn't understand why I would be. And so I got a little scared that this nurse knew so little about dysautonomia. She told me that I shouldn't go to these doctors that treat dysautonomia, I should go to a cardiologist. Eventually, she said, "Well, maybe you should talk to a nurse?" I was like, "You aren't a nurse?!" She said she'd have a nurse call me back. So I've been waiting for a nurse to call. But today I got the letter from the administrator saying that my appointment has been cancelled because they cannot accommodate my requests. But he doesn't even know what my requests are! I don't even know what my requests are yet! I was never allowed to speak to a nurse to get more information about the office in order to know what to request. This decision to cancel my appointment can only be based off of something the receptionist said. A receptionist shouldn't be allowed to give medical advice to me or to the administrator, right? Have any of you faced something like this before? Do they have the right to cancel my appointment like that? If you have any advice to offer, I'd like to hear it. I just don't know what to do. A sad and frustrated Rachel

Thanks for that info, Lauren. Also, if you don't mind sharing I'd be really interested to hear what your doctor has to say next week. Has anyone else here felt dramatically better overall (not just once a month) while on birth control?

Lauren, That is wonderful news! I'm so glad to hear that you are feeling better! I'm sure not perfect or normal, but that is great that you're able to get out of bed!!! I've tried tons of meds, but birth control is one that I've never tried. Maybe I should. Is there a particular one that you found to be better than others? Does your doctor have any idea why it makes such a difference? I know how it can help girls feel better because it alleviates the worsening of symptoms before/during a period. But I've never heard of it helping so much overall. So glad to hear your good news! Rachel

Thanks for the information, Rita. I'll have to check my local Target. Rachel

Thank you Karen, Emily, and Maxine for the update. Dear Melissa, I just wanted to let you know that you are often in my thoughts and in my prayers. Lots of love and a hug, Rachel

Sophia - thanks for the update. Poohbear - Oh my goodness, I'm so sorry. You are going through quite the ordeal. I hope the sugery goes smoothly and that the complications will be taken care of quickly and properly. I will be thinking about you and praying for you. Hang in there, Rachel

Rita, I've never checked my body water percentage, but I am curious to find out what it is! How much does one of those scales cost? Can you find it at a Wal-Mart, or do you have to go to a store like Bed, Bath and Beyond? Rachel

Hi Amby, Many doctors say that you don't have to actually faint to have NCS/NMH. They say that near fainting counts too. I was diagnosed with NMH as well as POTS, but I've only truly fainted about 5 times. However, I often get lightheaded and lose my vision because I'm so close to fainting. But like Lauren said, it can depend on which doctor you ask. Here's an article that Cardiactec sent to me once. It is written by Dr. Rowe and others at Johns Hopkins. It implies that you don't have to actually faint to have NCS. http://home.vicnet.net.au/~mecfs/general/nmh1.html Hope this helps! Rachel

Yes, he does require a referral, but it doesn't have to be from a pcp. Can you call one of your doctors and ask them to do a referral? Then you won't have to pay the copay for an office visit. Just so you know, Dr. Grubb is booked into December right now. So expect to wait a little while for a visit! Rachel

So sorry you're not feeling well, Emily. It is no fun at all to feel like poo. I'm wishing you better days ahead. Whenever you do get a chance to talk to Melissa, please let her know that we're still thinking about her. Thanks for sharing the tiny tidbit that she is doing okay. Rachel

Thanks for passing along the information you know, Sophia. Poohbear, we're still thinking about you. And I'm praying for you as you rest and recover. Rachel

Maxine, Yep, I have the breathing issues too. This was actually the first symptom I had that sent me to the doctor. I was a year-round swimmer, so it didn't make sense that all of a sudden I wouldn't be able to catch my breath. All of the tests showed that I had an excellent heart and that my lungs had 120% the lung capacity for most girls my age, height, and weight. So I was certainly not out of shape. Eventually we found POTS and other autonomic dysfunction. Shortness of breath continues to be a problem for me. Only unfortunately now it can happen when I'm just sitting. I no longer have the luxury of swimming a mile before I get short of breath. I hope that this doesn't become a big problem for you. And I hope you feel a bit better soon. Take care, Rachel

I haven't heard, but I've been wondering too. I hope that things are improving for you, Melissa. Or at the very least staying stable. I'm still thinking about you often and remembering you in my prayers. Rachel

Amby, That's wonderful to hear some good news! Thanks for sharing. That is so great that you have found a good doctor that you are comfortable with. I hope that the next ttt can give some clear answers. When do you go in for it? Rachel

Tammy, I'm sorry reading and singing are so difficult. Yes, I have the same problem. My son is just over one year old and he loves books. And even more he loves song books. I can usually read if I've been resting for a while. But if I just walked to another room, or if I'd been sitting and working on something then it can be hard to read out loud without being short of breath. And then trying to read just makes it worse! Singing is especially difficult. And that's hard on me because I love to sing. Sometimes when I'm singing to my son there will be a long pause as I take a few deep breaths. And other times I have to just stop. I'm sorry this is hard for you too. Rachel

A Happy Valentine's Day to everyone! May your day be filled with love, chocolate, friends, flowers, and fun! And if you are one of those who doesn't like Valentine's Day, may it pass quickly. Rachel

Please send the snow down to Georgia!!!! I miss it! After living in Alaska for 7 years and having snow cover for at least half of the year, I'm not sure what to do without it! Make a snowball or two for me! Stay safe and warm, Rachel

Amy, That is wonderful news! I'm glad to hear that you've been doing so well. I hope that it continues through the rest of your pregnancy and even postpartum. Take care, Rachel

Happy Birthday to you! Happy Birthday to you! Happy Birthday, dear Cardiactec! Happy Birthday to you! I hope you have a fun birthday and Valentine's Day all rolled into one! Love, Rachel

Thanks for the update, Sophia. Poohbear, I'm glad to hear that all went well. I hope that recovery goes well for you too. We'll be thinking about you. Rachel

I'm glad you were able to make an informed decision, Poohbear. I hope that all goes well tomorrow. I'll be thinking about you. Take care, Rachel