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Re: Lucky you!

Posted by ExhaustedMom on February 02, 2002 at 20:29:18:

In Reply to: Re: Lucky you! posted by sleepykitty on February 02, 2002 at 15:04:45:

Just checking in with the new posts, and boy, these last 2 are doozys! I get a different take on T.R.'s last post, and I hope they keep it and our replies if only to show how very different things are interpreted.

I know the first time I read thru T.R.'s post, I felt like you did, but then I went and read it again, and it seemed quite different to me. Reading Savannah's post, I can see how T.R. may have been offended by the implication that some of us were encouraging Jayde to self-medicate by sharing with her our own experiences with dosing on Ritalin. There was also a comment on Savannah's post about taking other's advice, good or not. T.R. seemed offended that Savannah implied our advice was not good, and I can see how T.R. felt that way. T.R.'s response was that sometimes you have to be pushy or assertive in order to get the treatment you feel you need.

A lot of the MD's are not familiar with dosing of the meds for Narcolepsy, and also a lot of the MD's are not very well-read in the new developments in N medicine. Some, such as my former MD, still believe N is a psychiatric disorder! T.R. is clearly frustrated by experiences with the docs, meds, and the whole entire process itself. T.R. is venting about the system as a whole. I don't feel T.R. was condoning altering med doses, just that sometimes you may have to have your head in between the doc and the prescription pad to make sure the appropriate things get done.

I'm very glad for Jayde to be able to be seen by the premier sleep facility in the nation. I'm also very thankful that your course of events was fairly smooth, but unfortunately, you may not be the majority. I have been thru hell and back trying to get appropriate treatment, and I'm a Registered Nurse! Now, if I can't help things go smoothly for myself, what can the non-medical person do? It was a few months before I could get my GP to send me for a sleep study, and when I finally went and got results, the doc told me I was normal. I also, being nosy, got a copy sent to me at home, and it was nowhere near normal! It was indicative of N, and suggested further eval! When I called my doc on the table about it, he stated he didn't believe in N, so therefore I couldn't have it! I asked him if I didn't believe in pneumonia, did that mean I couldn't get that either?! Left there, haven't been back since. Lucky to find a sleep doc in town that could see me within a month and a half, but that was after many months of debating what to do. My sleep studies were almost a year apart! I can honestly say I feel this could have been picked up about 4 years earlier if I had had the proper care, only I myself, Lisa the RN, didn't know any better!

T.R. perhaps does not have a smooth history, either, and for Savannah to imply that maybe our advice was not wise set him/her off the wrong way, that's all. I think the main message of the post from T.R. was to not give up- yell, scream, jump up and down if you have to. Don't be afraid of requesting what you think you need and what you think you'd like to explore as far as your treatment- be responsible for your own healthcare, and be responsible enough to speak up. Jayde was concerned that maybe Ritalin wasn't working, and she was scared. T.R. was pointing out that many of us on Ritalin have much higher doses, and maybe she would require a larger dose to obtain the desired effect. Trying to just point out that all of us are different, not telling her to slug a few more and see what happens.

See, we all have to keep in mind that not everyone's advice is going to be pertinent or valuable to us, but it is only right to be respectful to those who try to help. If I disagree with what someone is saying, I may post, too, and give my take, but never tell them not to listen to "them". That's up to the individual to decide. The doctor is still employed by us, the patients, and we have every right to make suggestions and work alongside of them in directing our own healthcare. T.R. was just pointing out that in order to be responsible to your own health, you may also need to be prepared to assert yourself. I bet we could write one heck of a book about all our experiences along the way! It's everyone's experiences that make this place such a great resource and a great learning experience. I think we're all wise in our own way, but sometimes we're just a little misunderstood.

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