I feel like I'm so out of touch with my lupus. I've been living my life as much as possible as if it doesn't exist. I still facilitate the meetings. I still tell people I have it. But I haven't a clue what's going on in the Lupus world. I feel ashamed. I have an issue and I feel lost. I feel like I only care about what's going on when I'm affected and I'm letting down or jipping the people who attend the meetings ( I started to write my meetings, but they belong to everyone, not me). I know I need to move forward with my life, but does that mean I have to stop being an advocate for lupus and cut all ties? At one time the whole lupus world felt toxic to me and I was having a hard time with organizational lupus if that makes any sense. I felt battered and bruised and disillusioned. I'm stronger now. Do I want to do it again? Do I want to get deeper involved? I know knowledge is power. I know the more informed I am the better I can handle my issues with my disease. I know if I don't take an interest my disease will be ignored by healthcare, the government, and society as a whole. I know, I know, I know. So what exactly is the question or my problem? I think it's because again I don't have a choice. Doing nothing is never an option. So I have no choice. What am I afraid of knowing?
I can no longer take plaquenil. When I put it in my mouth it has this strong, acrid taste. 20x worse than the taste of prednisone. So bad I refuse to swallow it because I'm scared something's wrong with it. Called one of my docs. Was told to call pharmacy. Called them, was told to take with applesauce. Not doing it. Took it to the pharmacy,they gave me a new script from a brand new bottle. I tried to take it in front of them and they could see the reaction on my face to the taste. They're returning it to the manufacturer. Meanwhile I don't have any medicine to take- sigh. I have a doc appt next week and the week after. Oh and if anyone knows of a support group near Columbia, SC let me know. Will be in the area in the summer and so far not havining any luck locating one. Thanks for listening. I know what I have to do!
Live.Love.Laugh.Enjoy life to the fullest!
I can no longer take plaquenil. When I put it in my mouth it has this strong, acrid taste. 20x worse than the taste of prednisone. So bad I refuse to swallow it because I'm scared something's wrong with it. Called one of my docs. Was told to call pharmacy. Called them, was told to take with applesauce. Not doing it. Took it to the pharmacy,they gave me a new script from a brand new bottle. I tried to take it in front of them and they could see the reaction on my face to the taste. They're returning it to the manufacturer. Meanwhile I don't have any medicine to take- sigh. I have a doc appt next week and the week after. Oh and if anyone knows of a support group near Columbia, SC let me know. Will be in the area in the summer and so far not havining any luck locating one. Thanks for listening. I know what I have to do!
Live.Love.Laugh.Enjoy life to the fullest!
