maggie

I drink 100 oz of water a day, 20 oz five time a day. In each of the 20 oz I squeeze a 1/4 of a lemon into my water. I've done that now for 10 years and it works well for me.

Good luck with your new treatment hope it works out for you.

I watched the video as well, what courage this girl has. My journey has never been that difficult. I'm sorry have no answers either, but will keep your family in my prayers.

I understand your feelings about this. I was in an electric wheelchair for two years. I sat an looked at it for months, just didn't want to go out in public in one. I finally over came my pride got in it and away I went. I now can walk everywhere I go again. It took a lot of hard work but I did it. My advice is use it when you need to and hope that this will not be forever.

I have used a Polar heart monitor for 8 years now tracking my heart rate, especially when exercising. I have had much improvement with my heart rate, but like you my adrenalin will spike, but mine doesn't spike until six hours later. I can't take many meds so when it's overwhelming I use a Xanax to help slow it down. I have started biking to help improve my strength and use a garmin odometer. It measures my heart rate the entire time I'm riding. I then dump this info onto a site called starva and my doc can go in it as well to see how I'm doing. He wants me to train in the 140's trying not to go higher then that. I find that if I keep it in the 140's I can bike for two hours and not get that spike. I also don't exercise too late in the day so that my body has time to relax.

I live in a condo on the 13th floor a year ago I started walking up the stairs. It has taken me a year to be able to walk up all 13 flights of stairs without stopping. I agree walking stairs is difficult, but can be done. Don't get discouraged dancer65, this is where patience and just grit keeps you going. Don't look at what you can't do, but what you can each and every day.

I drink 100 oz of water a day. I eat five small meals a day and at each meal I drink 20 oz of water. I have done this now for 8 years. I don't use those other products for the reason of the chemicals in them

What I found for getting my heart rate lower was to slowing introduce exercise in small amounts. When I started my standing heart rate was 140, now after five years of exercise it's down to 90, fifty beats per minute, I would say that is success. They say swimming is the best form of exercise, but with pots what I have found is: if I use my legs and arms at the same time my heart rate goes much higher. So what I did was to start my building up my leg muscles first, only using those muscles, my heart rate stayed lower. As I have built up my legs and core muscles slowly, I have been able to add my arms to the process as well. I still have a difficult time using both without my heart rate going too high. I have worked closely with my doctor on this. I believe the key is going slow and making small improvements and resting like you are doing. Keep it up, listen to your body, and knowing when to stop is very important, pushing through is not always the answer.

I don't sleep the night through either, since having pots. I now take one .05 mg of xanax an hour before I go to sleep. It puts me to sleep till about 2:30, then I take another one and sleep till 8:00. This past Thursday was the first time in 8 years that I slept the complete night through. I am hoping this will happen more. I still rest in the afternoon for an hour, sometimes I sleep an other days I don't. I find that if I over exercise sleeping becomes more difficult. Learning how to manage all this can be quite difficult.

I have been very fortunate with my pots. I was dx in nov 06, in bed for 6 months and then in a wheel chair for 2 years. Have slowly been getting better. What really helped me was ballroom dancing. I started with only being able to dance for 3 minutes at a time, I can now dance for two hours. I don't think I would be able to work full time, but other then working, I can go walking, shopping, go out with friends, I even started to travel again. I can't say I am fully recovered, but enough that I can once again enjoy life. I don't know if this type of post helps or hurts those of you who aren't doing well, my intention is to bring hope to those who are struggling so, I've been there as well.

It's been eight years since I've flown and finally I took the plunge and tried it. I took a short direct flight and all went well. I was tired the next day and had to take it easy, but the next day did fine, another mountain climbed!!!!! Maggie

I have been doing my homework and found out I'm not on plan b, so they are sending me forms to fill out. Now I am working on getting the supplement plan. Thanks for all the help

Thank you for all this info. I'm going out of town tomorrow, but as soon as I get back I will head to the social security building and see what I can get done. Maggie

I have won my disability case and have been receiving benefits for over 24 months, which I qualify. I have talk to three insurance agents today, which helped me get this far, but now am stuck. Not one agent knew how to get me on medicare. Thanks for all your help, I will look for my state commission number tomorrow and try that route. All the government sites I tried stated that I had too many assets to apply. I should restate that I could get insurance, but the cost started at 600.00 and went to as high as 900.00 a month which is what I'm trying to get across to my soon to be ex, who is going to pay this amount? Maggie

I have been trying all day. I did get through to healthcare.gov and I also have to much in assets to be approved for government help. I also got onto Blue Cross Blue Shield which is my insurance now, and they also stated I made too much, they stated to try and get on medicare, but don't have any idea how to get on it. Maggie