In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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Oh thanks rosie, I'd love to stick around. Since PBC is an auto immune disease and and I still have pain and dibilitating fatique and still have to take the plaquenil and steroids I can at least sympathize with all you lupies. Besides you guys have gotten me through so much as long as I'm still welcome to be here I ain't going anywhere. Oh from what I have read there is no cure for PBC unless it gets to transplant stage. On my knees praying that doesn't happen.
Hi Judi lol, yeah that's pretty much the story of my life. But than most guys my age are married anyway. I used to ask for a rich man now I'll just settle for one that's breathing .
Hi Omega, Thanks for your support. Yes I was really nervous after my last rheumy. I was stressed out the whole morning imagining what a nightmare I had in store so it was a pleasant surprise.
Hi Kris, thank you sweetie it goes both ways. I will never be far away if anyone here needs me. I know I can always count on any of you too. I will keep everyone updated.
Thanks Patty, I actually tried to find a support group for it but all I found was ones for hepatitis and alcohol related cirrosis. Which isn't the same thing. I have to see my regular pcp tomorrow for a chest xray to check the pnemonia so I'm sure she'll have somthing to tell me. Yes it is getting cooler. in fact yesterday it was down right cold in here in the morning. I hope you are feeling better with the weather changes.
I don't know what to say except welcome to the world of PBC. I lived with the diagnosis of lupus for about a year and was diagnosed in August with Primary Biliary Cirrhosis and my gastroenterologist (which is the kind of doc you need to see about this) told me I probably never had lupus and that the high ANA and alk phos were most likely from the PBC and NOT lupus. I thought I was the only one with this PBC. I just happened to log in here tonight and try to catch up on what had been going on with everyone and your post was the first I opened and I was shocked to see someone else with my diagnosis as well. I also had to have a liver biopsy. When you see your gastro doc, ask for an AMA blood test. It is the confirming (99.5% of the time) for PBC. I am now on medication to halt/hopefully stop the PBC from progressing. It was weird to find I didn't have lupus but also frustrating to find out I had a rare autoimmune liver disease. Look up PBCers online and there is a LOT of information on the disease. I wish I could say I am happy with our diagnosis but I am still struggling with the emotions of having been wrongly diagnosed with lupus and living with the pain and horrible fatigue for a year with no real relief from any of my docs for it. Now, with the new diagnosis, I am working with my gastro doc to get me on a regimen of med Ursodiol and adjusting dosages and such. I hope your pneumonia is all cleared up and that you are feeling better. Keep us updated on how you are doing. I will be reading here regularly as even though we don't have lupus, the support and encouragement and loving people are wonderful here. I read the posts and the community feeling here is so great.
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Hi everyone. I'm sorry I didn't get back to all of you, but a friend of mine has leukemia and had a port put in yesterday. Her husband is out of town so I stayed over night to help her out and just got home a short bit ago. Frankly I'm pooped out! I intend to get on here tomorrow and respond to everyone. I really appreciate all of your comments and time you spent sharing with me.
Rosie I am so sorry to hear about your sister I will keep her in my prayers.
Sending everyone love and prayers
I'm sorry to hear your about your friend. I bet you are pooped! Tks for popping in for a sec. You rest, take care and update when you can. You are in my thoughts and prayers.
Love ya, Babs
Rosie, I'm so sorry to hear about your sister! I hope they can get this figured out and on the right treatment to help her. She will be in my prayers. Update us when you can sis!