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Lets beat Pots


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Dear All

I have recently again been told that I am looking better. I have mentioned before that nothing health wise has changed but my attitude has changed considerable. I read an article this weekend in the latest reader digest. A doctor asked his patients who want to live to see a hundred and who did not. All the patients who wanted to live to be a hundred recovered from cancer and the others did not. We all know how hard pots is and having daily wars going on in our bodies. I want to encourage all of you to make peace with our problems and accept what we have. There is no medication or miracle cure for us. So lets change our mental states of mind we all know we cannot change the physical problems. :rolleyes:

I am reading a book I would like to recommend. I believe it will help all of us fight Pots. (Even if you are not ready to read it today, due to your personal reasons) Please go out and buy the book and keep it until you are ready to read it. I promise your life will never be the same again. And I believe it will give you the mental energy and will power to tackle Pots head on. :)

You have nothing to loose and it is only 2 to 3 pages a day to be read for 40 days. My husband hates reading so I might have to convince the non-readers ;) little more.

Thinking of all of you.


The purpose driven life by Rick Warren

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Thanks for the wonderful information! I think a LOT of us could benefit from a positive outlook- I know for me, it's what changed my life. I still have days where I get depressed, when I am feeling really awful, but overall I feel very strongly about the good things ahead.

Reading helpful books can make a big difference too- in so many ways. I know its off topic, but for example, my one year old was becoming a terror, and I couldn't understand why he was acting out so much- and he couldn't understand why I was always scolding him. We were butting heads and he was throwing fits and I was yelling...until I found "The Discipline Book" by Dr. William Sears. Wow, what a difference!! We haven't had a tantrum in a long time, and I feel so much closer and connected to him now that I understand him better, and how to handle these little everyday hurdles. I feel that it has made me a better parent! So I think reading a good book can make us better inside and out...great suggestion Kim!!

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Three of my children who are 19, 21, 26, 18 have read Purpose Driven Life, by Rick Warren, and even bought a copy for both my husband and myself. It is a wonderful book and has blessed my life...I am reading it for the second time.

Two other good books;

The Dream Giver by Bruce Wilkerson

When Bad Things Happen to Good People by Howard Kushner

Both these books are inspirational and from a religious perspective...two Christian and one Jewish.

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Ling, I'm glad you've been blessed by reading a Purpose Driven Life. I have a hard time getting past the "driven" in the title. In my case, I'm driven to do very mundane, everyday things, such as clean the house, do my errands, get out of bed at a reasonable hour, walk the dog, sit through a church service, etc. I have my little routines and responsibilities. So when I see the word "driven" in the title, I wonder if the author knows how "driven" I need to be to do little things? That's why I haven't been driven to read the book. I don't doubt that it is a great motivator. I would just feel more inclined to read the wonderful success stories of POTS patients since they know on an everyday level what it's like to be unreliable (because you don't know from one day to the next how you'll be feeling).

Also, on a different level, I totally agree with you that on some level we need to accept what's going on in our bodies and not stay stuck in a "poor me" frame of mind. At least we would be wise not to let the "poor me" color our attitudes towards life and towards everybody. On the other hand, each of us is at a different stage of "ruling out" possible causes for our ailment, and some of us have been successful at improving a good deal. If you can say that you've already "been there, done that" and tried everything there is, then you are in a good position to accept what's going on and move on. If you have not exhausted the options of finding out what's going on (or if you've developed symptoms that can be indicative of another ailment besides POTS), then in that case you would do well to pursue knowledge and not rest on your laurels about acceptance.

So I agree with you that feeling sorry for yourself and getting stuck in a "poor me" attitude serves no purpose, but I would feel more inclined to read a book by a person with my ailment, or chronic fatigue or fibromyalgia. Maybe one of us can write a book to inspire the rest of us on our journey?

I'm still glad you shared the book that has inspired you and I'm sure your attitude is an inspiration to those around you.

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Dear Futurehope

I have been thinking about you all day. I know exactly how you feel and where you are at the moment. Please do yourself a favour and read that book. I defiantly think you are at a stage of you life where you need it. I want to cry through most of the chapters anyway.

No one is going to understand us except people like you and me. I was so angry yesterday I heard of a mom who never holds her child or plays with it or anything. I don’t know if I will ever be able to hold my child in my arms for long. I can’t even play with my dogs less alone an energetic child. People don’t understand or get it. Fact!

As for medical help, I have had 10 years of very expensive experience. I do regret spending so much money on nothing. What are we actually trying to gain? Even the knowledge we get I don’t think is very healthy. My doctor has told me to stop reading up about my diseases and keep my contact with you all to a minimum. Naivety is sometimes mentally healthier for people like you and me. Don’t waste your money, time and energy on nothing. I have spent way too much time, energy and money on something that I have no return on.

Think about it. :P

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I too have had people tell me recently that I am getting better. Not much has really changed except this year I decided it was time to try to take back control of my life. (I have tried before but without as much success) As much as I haven't wanted to admit it, POTS has ruled for the last several years. I made a decision to try going drug free -- off beta blockers and Florinef (with doctor support) and try to let my body start healing. I still need small doses of Ativan for hyper stimulation but I have made peace with that.

I also decided to try more natural approaches to healing and attend yoga classes with an instructor who modifies poses based on my abilities as well as massage therapy weekly for pain management. In the beginning I couldn't do much of any poses and yesterday we celebrated that I could complete a pose correctly!! Both the instructor and therapist are naturalists and very nurturing and their constant encouragement has helped to heal my spirit as well as make changes in my body. I would not get the same effect from yoga tapes and my husband and I look at the expense for these sessions as "investments" for my health.

I just realized that I am beginning to sound very "mystic" which is not my intent. I think I have just reached that point where I want to try to help my body and mind work on healing themselves. We do all go through various stages and seeing ideas on this forum helps encourage and perhaps push us to see how far others have come. It is a personal journey but shared experiences make it not so lonely. I know I have benefitted from others stories.

Thanks for the books which I will look into reading. I also stay away from as much negative input like news etc. Amazing the difference if you turn the news off!!

One last thought...pushing myself harder this year is not without trade-offs, like resting more and knowing that when I crash it may be worse but still I am committed to this path.

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