Wednesday, July 25, 2012

" Get up, stand up. stand up for your rights. get up, stand up. don't give up the fight" get up, stand up by bob marley

through out my blogs, i have been trying to stress how important it is for thyroid patients to stand up for their rights. it is so important that we become self advocates for better health care . who knows our bodies better than we do? it is imperative that we, as patients, find a health care provider who listens- really, really listens to us along with looking at our lab values. and it is also important that there is a two way communication between our doctor and our self, so that we can map out the best course of treatment for us.

i have many examples( unfortunately) of" things gone wrong" between a doctor and patient , but i will use myself. if you have been reading my blog from the beginning, you may know that i, at one time, was seeing a doctor who thought that my symptoms were " just stress". he would see me once or twice a year, ask a few questions, pat me on the back and say good luck and see you next time. he was a nice person, just not a very good doctor. finally, i told my husband that i knew something was horribly wrong, that it was not " just stress" although i was dealing with some ( aren't we all?) at the time. i found a doctor who listened to me, ordered the right tests, and of course the rest is history.

at the end of that rabbit hole, i fell into "thyroid cancer world", and my world has never been the same. not that my life now  is horrible by any means , it is just different. i have a" new normal", to beat that phrase to death. some people have asked me " how did you know something was wrong? what were your symptoms?"    well, it was not just one thing. i felt a change in my body- a new tiredness- one more intense than, say, having a new baby and being up all hours of the night. it was a constant tiredness that sleep did not seem  to fix. that was one thing. and of course my blood work " looked awful" to use my doctor's phrase. of course, no one was willing ( or able?)  to do anything about it until i found the right doctor. another part of it was just the sense that i knew, somewhere deep inside, that i was sick and needed some help. call it intuition, call it your body parts waving a white flag and trying to get your attention, call it what you will, it was just a feeling.

i saw that darn " back patting" doctor for five years until i stopped fooling myself and did something to help myself. i highly recommend that for anyone reading my blog. if you have " this feeling" you are not getting good health care, if you have symptoms that seem strange even though you are getting treated for a thyroid condition( and this  includes all thyroid disorders, not just cancer) do some research and find a good doctor. it may take you a few tries, but you will get there eventually. to quote bob, " don't give up the fight."

i read a quote one time that i carry with me: " trust yourself, you know more than you think". i think that this is good advice for all of us, especially those of us who are dealing with life long health care issues like thyroid disease.

another important aspect of our health care is keeping good records- have a file that you keep copies of all of your tests in. this is so important, and it will be invaluable to you in the years to come. read all of  the information that you can get your hands on, from reputable sources, of course. one new website that has been brought to my attention is : this site contains very good reference articles on thyroid disease and care, and urges us to seek out better health care for thyroid issues. i encourage  everyone to check it out. i have already recommended some books on thyroid disorders, and of course mary shomon's site:

well, in closing, good luck to everyone in treating your thyroid disorders. be pro-active, ( another cliche) and get all of the useful information that you can. and of course, you can contact me at any time, and i will try to help any way that i can!

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