katsusu Posted November 1, 2004 Report Share Posted November 1, 2004 Having Parkinson's Disease (PD) for 13 years, then having unknown illness of POTS for 2 years before I wass dx - now for a total of 4 years. Having brain and backsurgery, pre-term pregancy with bed rest for 3 weeks in t he hospital. Being 2 times to NIH for 2 weeks as a research subject- and countless of hoursat doctors, on-line and wondering about what is going on in me- has brought me to where I am. I like to call myself a professional patient. I do not want the title to be looked as if i was a weak -sick person but I look at myself as - the bull stops here- I know what i have -I want to be treated with respect and as part of the team. Because when it comes to who knows whats going on day to day and unless the doctors are planning to coome home with me- I need to know what is going on.Now this might sound pushy,but remember I have known about PDfor 13 years. But PD has never been as bad as the 2 years that I kept going to the doctor because i was dizzy, fatigue, and nauseus all the time. All the time that I went to ER having chest pains short of breath. And instead of getting answers I was sent to the psychologist because i must be making up the symptoms. But do you know the doctors that gave me back my self respect were the psychologist- I ended up adoring them because they gave me back my self respect. If you ever need help- try to find a good one and open up and let that be a place where you release your feelings. And let them help you -understand that what you are feeling is normal under the circumstance.About having POTS and PD- for me it is confusing and lonely because I am 1 of 2 known people that have PD/POTS. I have my good times and bad times. Right now POTS is a bigger head ache to me but in the futureI know PD will take over that role. The biggest lesson I have learned is to accept who i am now- by giving myself to mourn the old me that could do anything she wanted -and accepting this new me that is very limited inher activites. When you learn to do that you can start enjoying life with in your limits by concertrating on what you can do and not worring about what you cannot do it. Try to live with what you can do and be proud of that. This is the first step in finding happiness and making your lifeworthwhile again. I never saidit would be easy- but it can be done. And remember- you will always be something inthe path of life that will trip you up-which willmake you feel bad about yourself, but that wiill happen to you with or without POTS. By the way- I live in Germany, my husband isthe US army stationed over here.Hope this will help some of your attitude about being sick. you may not be able to change the illness but you can change theway you let it control your life. Don't give it total power of control any more.Kathleen Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted November 1, 2004 Report Share Posted November 1, 2004 Kathleen, thank you for sharing your story. We all have come up with creative ways of dealing with chronic illness and for sure a positive attitude is essential! I too have had multiple health issues for a long time. Healing has included letting go of the person I was before the POTS. In addition to the positive attitude I have had to learn to how to do "reality checks" on exactly how my health is. Meaning, the important thing to me, is the balance. I try to find a balance of peace in moments throughout my day. In spite of the true distress of living daily with illness and limitations, I had to learn not to deny how difficult it really is. This reality check I do has actually helped me set more realistic goals for myself. Thank you for making me re think this topic. I find that the whole ordeal of life is a spiral, like a DNA molecule. We may even need to go back and repeat a lesson we thought we had learned years ago. When we review an old lesson, we do it at a different level so we actually are learning it for a first time. I think we can spiral up and down on that journey and that there ultimately is nothing "good or bad"...it is our journey that matters. You sound strong even though you are dealing with a lot. It must be an additional issue to have your husband in the army right now. Is he in the "sandbox" or can't you say? Well, I'm sending him my appreciation for "serving" in these more difficult times and my prayers for both of you. warmly, tearose Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 1, 2004 Report Share Posted November 1, 2004 Hi Kathleen,Thanks for sharing your story. You wrote many wise thoughts. You are in inspiration. I hope that one day I will have reach a similar level of maturity and be able to accept my limits etc.Ernie Quote Link to comment Share on other sites More sharing options...
corina Posted November 2, 2004 Report Share Posted November 2, 2004 Kathleen,I must say I really admire you having to deal with all this and living in a foreign country. You must miss your relatives very much. Do you have enough support around in Germany? I think you live in a special american community don't you? Well wish you all the best, especially since I'm kind of your neighbour (I'm from the netherlands). Hope you're doing well (as well as possible I mean),Corina Quote Link to comment Share on other sites More sharing options...
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