Finally getting off Preds

[Doug]

Rose- It takes a pretty put-together person to take on a doctor when taking on a doctor is needed. It builds confidence, and it helps weed out the doctors who just don't get what it is like to have this disease. Reading a book or going to a website of even the best resource will NOT prepare a doctor (or us) for every contingency. The forum weggies, at least, are exposed to the incredible diversity of experiences others had. Until I came on the forum a little over a year ago, I didn't realize how different each weggie's experience with the disease is. It is important, regardless, to have a team of specialists around you who inspire confidence, who understand you are there best resource for how your WG is doing, and who work with you as an important part of the team working to restore you to a new normal, preferably remission. Good luck with Cleveland Clinic! I'm rooting for you!

[Sangye]

Rose, I'm SO glad you're taking control of your care. Leave that guy behind and head for CC. Then you won't have to trust us more than your docs.

[Rose Cozzette]

yeah, time to take action! how did you set up your appt. with Cleveland? their web site says they will take my insurance. felt poorly all weekend with glucose drops and then rises. see my reg. doc tomorrow so will discuss all with him. he at least listens. let me know how you are doing. :}

[Rose Cozzette]

thank you. i did work with docs for almost 20 yrs and learned to not take them too seriously and to question when needed. we had some good "discussions" at times and personally , after being treated like i was ignorant abt my own health, i said i am a whole person so matter what condition i am in and deserve to be treated as whole. needless to say i have been thru a few docs and have gotten used to changing as i need to. the good ones support the pt. and dont let egos get in the way. i do trust the weggies perspective as we are in the trenches and can provide valuable info for the med. professionals. if they will listen.

[Rose Cozzette]

i told the doc i am going to die anyway so i might as well die on my own terms. he jsut looked at me. they dont like to talk abt death, like its their fault. seems its a lot harder to die than live sometimes. lol i know i'm difficult at times but i also shouldnt have to fight for my rights esp. when so sick. where's my advocate? sigh, my anger is a good thing right now.

[elephant]

Anger is good when you feel like you not being treated right. It has worked for me and doctors take notice! I have come out and said," do you have this disease? Do you know what it feels like? On and on and they back off.

[Doug]

i told the doc i am going to die anyway so i might as well die on my own terms. he jsut looked at me. they dont like to talk abt death, like its their fault. seems its a lot harder to die than live sometimes. lol i know i'm difficult at times but i also shouldnt have to fight for my rights esp. when so sick. where's my advocate? sigh, my anger is a good thing right now.

Rose- Every time I was hospitalized, I'd get the packet with the blank prime directive form in it, and I'd tell myself, "You really should establish, legally, what you want done if you are beyond survival." I still haven't made one out. Odd, too, because death isn't what I fear, it's being kept alive beyond any reasonable hope of survival with any significant quality of life. That is reason enough to make sure I take care of this detail before I need it!

[Lola]

I really like the way you put your thoughts, Rose...dying on your own terms. That says it all!

[Rose Cozzette]

after i got weggies i changed my directive to just 2 days of being kept alive if it gets bad, i decided no sense in messing around. i too dont fear death, just losing all quality of life. i worked with hospice also and saw how it can get if nothing legal is done. makes it really hard for the family. getting in touch with the cleveland clinic this week, also ready to quit my rheumy doc, he sent a letter to me wanting to put me back on mxt after if started doing things to my kidneys and we had discussed going on oral cytoxin. i feel like i am no longer much of a priority to him. sheesh. please do your directive! :}

[Rose Cozzette]

thanks, everyone shuld have the choice of living and dying on their own terms.