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Dear Friends


Ernie
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My dear Friends,

It's been awhile since I posted. I amupdating you to encourage you see the light at the end of the tunnel.

As many of you know, I was bedridden for 7-8 year, went to rehab 3 times a week for a year, then trained in a group for a year . Since last September I have been doing Ballroom dances 3 times a week for one hour. At the beginning I had to sit every 5 minutes because my BP was so bad but now I can dance for an hour, no problem!

We have started renovating the house to put it up for sale and I am also helping my husband doing the work like cutting the wood, cutting the ceramic tiles, purchasing the material.

I used to wear diapers night and day and now I can go without them. I can even sleep 12 hours without having to get up to pee in the middle of the night. I am very happy with the progress I made. I continue to make progress even though it is slow.

I think about you often and I am very grateful for your support through my rought time.

Love

Ernie

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Wow, that's WONDERFUL!!! Thank you so much for sharing your progress! I'm SO happy for you, and I know you are enjoying your new life with such enthusiasm and gratitude. Congratulations on pushing yourself and continuing to hope in spite of your long battle with illness!

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Ernie, I am so glad that you have updated us - I have thought about you and wondered how you were doing. What do you think helped with your recovery?

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Dear Ernie -

I am so very very glad that you posted this update. I have had you on my mind for several days, and I am so thrilled to hear the good news. I have heartfelt rejoicing for your recovery, and I shall pray that you continue to improve. How exciting. Dancing! I'm so happy for you.

Please continue checking in every now and then just to say "hi" - it's so great to hear from long-time friends.

- Cathy

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Hi,

I went to cardiac rehab. I did some floor exercises for about six months to strenghtens my legs. Then when I was strong enough they added sitting exercises. A year after I joined a group of older people who were training twice a week and were doing a bit of cardio. I had to push every step of the way because my muscles were hurting so much and I was exhausted. Then when I came home I had to sleep a couple of hours.

Last year after my last hope for top notch doctors' help failed I decided to take my case into my own hands. I am a homeopath. I studied 4 years for that degree and I practiced homeopathy for 15 years. Doctors used to send me their desperate cases which they could do nothing for and I was expected to figure out a solution. So I thought that I might at well work on my own case as if I was my client. It took me several months to get the good combination of homeopathic medications. Now I feel comfortable with them and they are helping me to improve. The process is long because I have 9 years of deterioration to catch up but I feel that my body as the capacity to improve some more.

P.S.; If you choose to take homeopathic medication you have to consult someone who is very competent and knows very well what he/she is doing because each person is different and even if we have the same disorder ie POTS we don't need the same homeopathic medication. Homeopathy does not work the same way as regular medicine.

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That's fabulous Ernie! What else did you do beside exercises to help you regain strength?

Do you feel you a "normal" or do you still have symptoms and have to take rest breaks?

How long did you start out exercising?

I have to say I've been feeling very lately like I'm never going to be able to do anything substantial. I've been sick for 12 1/2 years and most of it has been bedridden. Do you have any other advice on how to start making progress?

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Hi,

I started to train in blocks of seconds, like 10 seconds and 60 seconds of rest. I would increase the exercise as I would tolerate it. The session lasted one hour but I trained maybe 7 minutes overall in it without counting the resting period.

I am still not normal. My POTS is genetic so I will never be cured but I am aiming for a better quality of life. I still have nausea, headaches, tremors, diziness, fatigue. I sleep 12 hours per day. I can walk for one hour (or dance) but I can't stand still for more than a minute or two. I can now shop alone but I bring my portable chair to sit when I wait in line. I sweat tremendously so I need to change clothes about 3 times a day and in the summer I need to wash myself twice a day.

If we consider that in 2007 I was fainting every single time I was standing (on all my meds), bedridden, on bedban, washed, fed in bed and the doctors wanted to send me to a nursing home for the rest of my life, I have made a great turnaround.

As more advice I would say to find a good team of doctors who believe in you and never give up on yourself.

I feel I will improve so more I just don't know how much and how long it will take to get to my peak.

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Ernie~

I'm so glad you posted to let us know how well you're doing! I'm so happy for you. Congratulations! Please keep in touch from time to time to keep us updated.

Cheers,

Jana

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Thank you Ernie for posting and telling us about the amazing parts of your healing journey. It is so good to know that even after a LONG period of being down and out ... that the body can find its way back. As you said, it may not be a cure but you are so far from where you were and I know you are deeply grateful for all that you can do today.

thank you for sharing.

~EM

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Hi,

At first I was not even able to exercise in bed. I was only recuperating from fainting about 3-6 times per day. Then I stated to exercise in bed a few minutes in bed even if I found it boring.

Now I can do much more than exercise. I am helping my husband renovating the house, cooking, shopping. I have to plan my energy and rest during the day when I am too tired.

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really glad to hear from you ernie and such good news. i admire your perseverance and strength (as always :blink: ) and am glad that it pays offf! like you i think we have to get the most out of life, with or without the help of doctors. i really am thrilled you're doing so well!!!

love, corina :)

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Congrats Ernie,

Wonderful news to hear. I wonder if we all could get cardiac rehab? Couldn't hurt to ask? I'm so happy for you!

:blink: BellaMia~*

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Hi,

I think rehab would help a lot of us. I had to give it a try for a long time before a saw the benefits.

I still do faint from time to time but now my biggest trigger is dehydration. When I started to dance last fall I did not know I was sweating that bad and I had a few "incidents". Then someone in the class pinpointed that it was always when I forgot to drink my water. Since then I have learned that I have to drink from 500-1000 ml of water with electrolytes per hour when I dance. With that I am OK.

I am very careful of the other triggers and I control them very well.

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