Hi everyone. This is the first I've been able to get in here in a while as work is just going horrible and I've been working extra hours and by the time I'm done with a 10 hour work day all I've been doing is shutting down both work computer and laptop and going to bed feeling horrible.
I went to the new PCP last Friday and I do like her, however, not much accomplished at all. She took my history and I had taken copies of all my labs and tests, etc. with me and gave them to her. Told her I hated my present rheumy and she looked up my insurance and called my insurance company and was told his is the only group in my plan so I am stuck with him. I asked her if she could kind of take control of the lupus issues so I didn't have to see the rheumy again and she is the kind of doc who is all for "specialists" and thinks that since the rheumy "specializes in lupus" (I laughed out loud when she said that) that I should continue with him. I told her about the pain issues and wanting to get it under control and about the xanax being cut off and she is not a kind of doctor who likes prescribing pain meds unless she is sure of what is causing the pain. So, I did NOT get any pain meds from her. She said if the pain is related to lupus then the rheumy is the one to prescribe the pain meds.
I am back to square one again. The rheumy sent my old doctor a letter last week which stated "tested positive for lupus but not active at this time". I wanted to scream when I heard that. What the heck is going on? First I have lupus and now I don't. No wonder I can't find anyone who will listen. Maybe the pain is all in my head and the ANA of 1:1280 is just in my head and it raised when they drew the blood cause I wanted it to be positive. We cannot physically alter a blood level just by thinking it.
And to top everything off, my entire family got together yesterday to celebrate my Dad's birthday and everyone could see that I just wasn't joining in (Mom says are you just gonna sit inside while the rest of us are outside). I had to stay inside as it was just too sunny and hot for me to go out. So, I told Mom that I was staying inside. My family can't physically see that I am sick so they just don't get it. My younger sister and her husband were downright rude and sarcastic to me. I know my Mom and Dad know what is going on and they are there for me but I still don't think they "comprehend" the seriousness of lupus.
Okay, now that I've vented I feel better emotionally anyway. Now gonna see if I can figure out where to turn for some help with the pain. I'm seriously looking into the pain center at the hospital where I work and just putting the visit on my charge card and somehow will pay it off eventually (since I can't get referrals from any of my docs I have to pay).
And I'm not even wanting to take pain meds like all day every day, I just want them for days when it is 8 out of 10 on the pain scale, and it would be a little anxiety relief as well to know that I have some on hand when I need it.
Thanks for listening.
Soft tissue joint disorder 2007 (can't spell or pronounce the name), Lupus Sept. 2006, IBS 2004, Chronic Hives 2002.
Medications: Allegra and Zantac; Xanax PRN; Lunesta and Ultram PRN.