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Time to takea stand


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When I started writing this-i went another direction before i got to my point- so ou might want to go to part 2.

This posting has somewhat to do with my last posting but in my last one was just about the experience, and at a time that i felt like situation took over me instead of me controlling the situation. This posting has to do about our strength that each of us have inside, and how we need to trust and have hope in ourselves.

Lets face it -when we go to the doctors for POTS or a cold - we are put in the same catagory has everyone else and we are not. Besides that our body reacts differently - we also react to medications differently. Trying to make a doctor to understand why orthostatic vitals will tell him how bad you feel and that POTS has a way of telling you that something is going on in your body- only to have him miss the point and tell you that "we already know you are tachycardia " is very frustrated. IF we know we have POTS that alone makes us knowlegable then most doctors and nurses about the condition.

It took the medical staff 3 years to figure out that i had POTS. IT was when i was getting brain surgery for Parkingson Disease they happen to figure it out. I remember when i was in the hospital and not knowing about POTS- and how hard of time i had recovering. I had problems explaining to doctors that i always felt sick- so many things were said to me - not that they were trying to be mean but somewhat sarcastic. I also saw how others were treated sometimes- especially the older patients. They do not understand that a little remark or even a small look that might not mean anything to them - might be very painful especially when you have a illness as POTS on top of other medical problems. When I was recovering I almost fainted - they took my orthostatic vitals and thought I was dehydrated. So- they pump, and pump, and kept pumping me with fliud but my HR never would go down. For a week they took my vitals 3 x per day- till they figured it out. Finally, I felt like screaming - I TOLD YOU SOMETHING WAS WRONG. I think that getting the respect that POTS is an actually -very difficult illness to have- is all we ask for -when we know there is not much help for us besides knowledge.

Trying to get respect that you know your body and trying to explain why you are so interested in your pulse and why taking orthostatic vitals is the only way - they can see if you are alright or not. I think all of us have had our vitals taken sitting down and been told that our vitals are perfect. They don't understand that our vitals tell us alot about what is going on- that alittle change means more to us then the average person. I sometimes think it more frustrating having knowledge and trying to explain then explaining over and over about POTS. (and still people do not realize the inpact POTS on your life).

Please don't get me wrong - I am not bitter. I know there is alot of wonderful medical personel out there, but i also know that we have to stand for ourselves.

Part 2.

When I was in the hospital recovering from back surgery, getting frustrated because the nurses did not understand why i couldnot take all painkillers or why i was always asking for anti-nauseau medications. I also found out that my physchologist was going to Iraq for a year and that my doctor would not be available for unknown time - leaving his partner that i did not get along with. i felt very alone and almost hopeless. i was asking GOD what I was suppose to do and what was i suppose to learn from this. Well, I think i got my answer- even though i did not really like it at first- it made sense.

I think there comes a time that we know as much as we are going to know at that time. That we have to stopo going from test to test, from doctor to doctor , to keep searching and putting all our hope -where we are often let down--and start putting our hope in oursevles. Our knowledge, our strength and our determination. Because no matter how weak you may feel, stop to think how strong you really are because you are here looking for answers, you keep coming back and fighting (even if you feel you are losing) - don't you see -you are losing hope in others because they can not give you the answers -a fast cure. Because there is no fast cure or answers that fit every body. It ends up -for each of us to learn what works with us- to get ourselves knowledgeable to make a doctor respect you - and to most of all- trust your self and your knowledge of your body and what is happening and what medications does to it.

You see, i should of told my doctor that taking too many painkillers and sleeping aids- makes me emotional. and i should have realized that was happening to me that day -i let the nurse get to me. If i trusted myself -things would of ended up diffferently.

I am not saying to not look for medical help. But there comes a time that you need to know you have done all you can FOR THE TIME BEING -now it is time to have HOPE in yourself- -someof you are not ready yet, but some of you know that the HOPE that God gives you in yourself has made you stronger then any hope you could have in anybody else.

Basically -we have to stand up and make doctors and staff understand POTS, instead of waiting for them to teach us.

hope it makes sesnse.

sorry so long

just a thought


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Guest tearose

Kathleen, Thank you for your writings!

I think it is said wonderfully and oh, so true! It is not too long, it all makes sense.

We do have to learn to trust our own inner wisdom and follow it!

Your words are strong and inspiring.

Thank you again! tearose

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Kathleen, your heartfelt words are so true. In the beginning, I believed in the medical system and thought I was supposed to place myself in their capable hands but have learned that it is better to aim for a partnership, where I am more in control of directing my healthcare. Listening to those who have knowledge and then trying to relate it to what I know to be true about my condition. Sometimes this can be frustrating and sometimes this can be empowering. Having others here who walk the same or similar path is also quite validating and assuring.

I smiled when you wrote about the "simple" procedure of having orthostatic readings done. A very good ER doctor (before dx) told me that I presented like 2 separate patients: lying down, everything looked pretty good, but standing I quickly progressed to crisis mode. I have told my husband that if I am ever groggy from meds in the hospital to demand that orthostatic reading are taken before they dismiss me, saying I am "just fine".

Thanks for taking the time to share your thoughts and I hope you are recovering well.

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very true...

after YEARS of fighting to be believed, and again most recently with my gallbladder stuff...i keep saying, god what am i to learn from this experience. patience, letting go, surrender, thankfulness...but also the realization of my own inner strength to keep fighting to get better. and that in the end I KNOW MY BODY THE BEST. and in the end, i was right about what was wrong.

i think that might be what you are getting at. we may be sick/disabled physically...but we are so strong in spirit....emotionally and spiritually.

okay, i already took my ambien so this could be absolute greek...




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I do believe that when all is said and done, our bodies have an innate wisdom and are trying their best to heal -- in some cases we need only step out of the way and let it happen.

Reminds me of that Spontaneous Healling book by Dr. Weil. Hmmmm, maybe I should read it again.

Thanks for reminding us that hope is always alive.


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