Well, it's finally official. For six years, I've been ill with some sort of auto-immune disease but my doctor could never pinpoint what exactly I had. In 2008, I felt so much better and I quit going to her because whatever it was had gone away and I was FREE!! Until December of 2011 and I fell off the cliff, figuratively speaking of course, LOL!
I went back to rheumatologist and saw the PA this week. I asked about my labs and she said that I still had active lupus.
STILL HAD LUPUS????? WTF??? WHEN HAD I BEEN DIAGNOSED WITH LUPUS?????? I was flabbergasted. I asked her what she meant and she told me that when I came back in December of 2011 that the blood tests showed positive for an indicator of lupus and combined with my other symptoms, they could definitively diagnose me with this.
So the last two visits with my doctor, nothing had been mentioned but I was so disbelieving, the PA showed me in the doctor's notes where it said I had been diagnosed with SLE, not RA as originally discussed nor scleroderma with CREST.
The last couple of days have been a rollercoaster and I'm still dealing with it. I've been angry and weepy. It's really frightening. But really everything makes sense.
So this is my big announcement and a bit of an explanation. I love to be around people and hang out but this disease can take a lot out of me. The way I feel is often too complex to describe and it can change from day to day. But I've often used The Spoon Theory in explaining how I've felt and all too often, I've borrowed spoons from the next day.
So if I bow out of anything, I apologize in advance. I make plans and then have to break them because I'm so sick. Today, I'm running a fever and my joints ache. So ask me today and I don't feel like doing anything. But next week is different and I hope I feel better :)
Oh, wow, I would be sooooo pissed at your doctor. WTF?! On the plus side, you have a diagnosis. That's so much better than being in limbo...
ReplyDeleteD'oh - I don't see a way to subscribe to comments now...
Thanks Chris. I'm still mad at my doctor. I've always liked my PA and the nurses there, which was I was happy for my escape in 2008 :D
ReplyDeleteAnd there is a subscribe up by where you can star it. I think.
Oh, tricky - I never would've thought that the subscribe was hiding in the star thingie... But with Discus replies, you get an email anyway.
ReplyDeleteMaybe it's time to break up with your doctor.
Oh that was the plan until she left her practice. I'll see what happens with the PA and her partner
DeleteOh, Lori! I'd be so mad if I were you that the doctor didn't "bother" to mention your diagnosis! It's unreal, actually. And I also love the spoon theory. Works well on people who have cancer, too. Many, many hugs are coming your way!
ReplyDeleteI know. :( I was really shocked, especially since she had told for two visits since then that my symptoms were just the fibromyalgia. It's a good thing I didn't take off for another three years, thinking there was nothing wrong and everything was in my head.
DeleteI was diagnosed with Lupus about 7 years ago. For years, I was told I had connEctive tissue disease (aka- I don't what you have but it's something. ).
ReplyDeleteI am giving you a virtual hug and to let you know you have a cyber friend in this.
Tracey D
I am sorry to hear that, Lori. I hope that they can get you to a manageable place soon. I know there are so many different forms of Lupus. My brother in law has it and he is doing okay. Apparently, he has had it for many years. I am not sure of the type though. You will be in my thoughts. I hope you start to feel better soon. :)
ReplyDeleteHi Lori - accidentally tripped into this blog clicking a Romance Reviews piece but wanted to respond since I can understand the frustration with auto-immune disease. I'm an indie self-published fiction writer who also has credits in animation television writing and production. Three years ago tomorrow I was diagnosed with Relapsing Remitting MS but statistically am what they call the "benign" category so you can't really tell unless I have a flareup. I went several months until they nailed my diagnosis down and lupus was something they had to rule out. But at least I knew they didn't know. To find out in your shoes they knew and didn't make sure to tell you or ask every time you came in, I'm with others on this board, that is not only a devastating way to learn but make it all the more difficult on a future relationship with the doctor. Learning you have an illness like this is a rollercoaster, and your emotions are normal regardless of how you found out. And your attitude is good, plan for tomorrow and do what you can. I don't know you or your work (yet), but from one writer to another I wish you all the best. - Shannon Muir
ReplyDeleteThank you Shannon. I wish you the best too!
ReplyDeleteHi Tina ;)
ReplyDeleteYeah, I hope to get there too. In 2008, I was doing great and getting stronger. When I went to California last year, I felt like I had turned a corner and this year, I knew to never take days like those for granted, ever.