geneva

Emily, you so clever!

Jessica, wishing you well through delivery and look forward to seeing the new little one!

Hi Jenn, I am so sorry for your experience. I went to Mayo, FL some years ago and without fully realizing it, I had all my eggs in one basket (just read that from EM!) and my expectations were through the roof. ALso, my family and friends just knew if I could get into Mayo, I would get a treatment plan that would return me to health. The disappointment I felt at receiving no new information was devastating and having to tell my family/friends that nothing had come from the visit brought me down even further. Don't let this happen to you! You gave it your best shot. They should have done more, but didn't. So, on to your next plan which sounds better for you. I am sorry you picked up a bug on top of everything else and then having to fly on top of that. But, you made it! Rest well and don't second guess yourself about going or anything else.

Sally, I wanted to add my welcome to the forum. I had trouble with BB also and in the end, they didn't do enough good for me to continue. Hopefully you can find something that works for you. We are all so different in what med helps that unfortunately it is usually a try and see approach. hope to learn more about you in the future!

Hi Karyn, you are definitely not the only one. My family thinks I go a bit overboard but they support my quirkiness about (not) spreading germs. I give everyone their own individual bottles of Purrell in the cold and flu season and ask them to use when they are out in their daily activities so they don't bring germs home to me. Even at church where we are expected to shake hands, I take out my Purrell and clean my hands (while my husband rolls his eyes lovingly!!). Also, when a delivery comes, I always make sure I sign with MY pen. I am also the Lysol-Queen spraying down everything in the house when I see a need. Bordering OCD --yes, I think maybe so!!! But, it WORKS so can't argue with success.

Corina, if you want to see Texas, come on over, we have plenty of room for the whole family and we would be delighted!! But, if you want to enjoy yourself, don't come in the summer months, or like me, you may have to spend the entire day in the house with the A/C cranked up high. My husband and I are hopeful we can return to Europe sometime in the next few years. I had to leave my job Geneva, Switzerland abruptly when I got so sick and was never able to return so that is one of our stops, plus France, England and Scotland so maybe we could drop by and say HI! Isn't it funny how we all like to cross the "pond" for our special vacations?!

BW, sounds like the new doctor is pretty good which must be encouraging. I know what you mean about the headache from storms...I am just like the old farmers who can predict when a low pressure system is coming 24 hours in advance! My neck hurts something awful. WOW, a slumber party for 8 year old girls. What a great Mom you are because I am sure the stimulation from excited little girls was overwhelming for you. take care.

Hope the procedure went well and will give you some relief. Rest well.

I love to pretend I am on vacation somewhere wonderful. I can close my eyes and see the whole trip and how enjoyable it is, doing things that I probably won't ever be able to do (that is not the point of course). I plan the travel itinerary, the excursions, and seeing friends. During this time, I really feel like I am there and it is very relaxing. Hours can pass by while I am "on vacation". I just got the book, "1,000 Places to See Before You Die" by Patricia Schultz. Last week on one of my difficult days, my husband and I went through it looking at all the places he and I have been separately and sharing experiences. It was so fun and most of all, distracting! Also, I started reading the book (recommended here by someone I forget) called "Full Catastrophe Living" by Jon Kabat-Zinn and I am finding suggestions to try to live with illness. I also liked his book, "Wherever You Go, There You Are". Bren, glad you are feeling better. It is such a good topic and the wonderful ideas here will help others as well.

Corina, I am so glad to see that you have not let this bad experience cloud your thinking. You are so right about what is really important in life and it is wonderful that you have such a supportive family. My husband and I were just having a discussion last weekend about how blessed we are -- in spite of -- living with POTS. Ariella, my internist said what you did, that most doctors hear about the ANS but not in depth and not about how to dx a patient with a problem or how to treat. It is just so rare for them to come in contact with someone like us, that they don't focus on it in med school.

Corina, You and your husband are to be congratulated for handling yourself so professional....something the doctor could have learned from you. Do not let this get to you. Just back to your doctor who believes in you. Hope you had a good rest.

I live outside Austin, Texas now but was living in Europe when I became POTsy in 2000. Have lived in New Jersey, Georgia, and Florida. Interesting to see where everyone is from...good topic...thanks!

Hi Linda, welcome to the group. I think you will find there are people here who have experiences with POTS and pregnacy who can answer your questions. I also recall that we have one or two others who are from your home country. It is great you found the forum and I look forward to hearing your personal story.

Good luck today Nina. Hope it is all good news!

Morgan, when it rains, it pours but seems more like a monsoon season hanging over you and your family. I am so sorry for this latest hospital nightmare. I hope that your son is doing better and I hope you will be able to get the rest I know you must need at this point. always keeping you in my thoughts. wish we all lived closer to help out.

WOW! VERY impressive. good for you taking the high rode to try to educate. Now, next time you need to go to that hospital you can refer any unknowing doctors to call this guy!

I previously shared that Florinef caused my BP to go nuts, primarily high which caused the doctor to increase my beta blocker. I felt like we were just chasing one med with another and finally after several years weaned off both over an extended period of time. Also the wired feeling 24/7 was horrible. But not everyone has these problems. You only know through trying. Moon face?????......well, I can tell you that the pictures of me taken when I was at the highest dosages sure look like my face is rounded when in fact I have a longer one! Off it for a year and my pictures look like the old me...can't explain. The other reason I tried to wean off Florinef is because I have osteoporosis already and have read several articles that it does contribute. good luck to you. just remember, you might be one of the lucky ones who really benefits from the increased volume without major side effects.

Derrick and Jacob both sound like young men well beyond there years....and tremendously courageous. Danelle, I am so happy that you have found a good doctor and one that your son can feel comfortable being completely honest with. If a child has POTS, I think having a parent who knows exactly what it feels like is probably an asset (not that anyone would wish another to have this illness). I think you are doing a great job managing your own health needs and giving your son all the support he needs as well. Be sure to remember that. Blaming yourself would serve neither of you. You clearly are a devoted mom.

Roselover, I am glad you have found some relief with the fluids and if you needed 2 liters, I would say your tank was definitely on empty. Sorry about the numbing agent. The only time they want to use that on me is when the hand is the only option. 99% of the time I get IVs in my arm and don't need the numbing. But, as you say, lesson learned...and shared! Feel better!

Stacey, it is good to hear from you but sorry that so much is going on. Take good care of yourself while you are caring for others.

I always take as much IV fluids as they will give me! I can't use my bp to judge if I have had enough because the stimulation/adrenaline I get when I am in the doctors/ER always causes it to look high. Away from the stimulation my bp may drop up to 50 points. I can usually tell that I have had enough fluids when I need to pee every few minutes!! good luck to you and I hope the fluids help. I have always found it to have a positive effect for me.

Mary, my heart goes out to you and Marissa. Life shouldn't be so hard when you are a child. I will continue to keep her in my prayers that someone might find a solution for her. Take care of yourself too. I can only imagine how difficult this is on you and your health.

Merrill, just thinking about going 0 to 40 makes me dizzy! I hope you are doing better this morning.

Julia, just wanted to let you know I am thinking about you and hoping that you get some answers soon to your pain. The waiting for the interpretation must be hard but I hope that the doctors will be able to figure out something to do for you that doesn't involve surgery. I believe strongly that when you feel something isn't right in your body, it usually isn't. Hang in there and do whatever it takes to take care of yourself.

I had a nurse at the hospital in January tell me, "gosh, you don't LOOK like a patient". My reply was "well, that because everything that's broken is hidden on the inside". She didn't have any more questions after that! EM, I would like to add another to your list and that is "wow, you are so LUCKY to have disablility payments AND you don't have to work" like we wouldn't give it up in a minute to be healthy enough to return to work. People just don't get what they are saying. And, my least favorite is when someone says, "aren't you glad you don't have cancer" or you are so much better than this person I know who recently was in a car accident...." It is as though what we struggle with everyday is not as devastating. The people I like most are those who have said to me, "you are very BRAVE to face what you do everyday. I don't know that I could do like you do and with a positive attitude". That's so much better than you don't look sick, right? I know it is through ignorance, not an intent to be hurtful, but people really can say the darnest things! It has been a real learning lesson for me and as I meet others who have illness or disability, I try to think before I speak and be sensitive to their needs much more so that I might have done in the past.