I have my cell phone with me at all times. I called the ENT's office this morning to see if they got the pathology report from the biopsy of the salivary glands to see if they test positive for Sjogrens. They did get the results back. The ENT will call me back today with the results. I am definitely going to be on edge waiting for the phone call. This will be a long day!!!!!!!! I am nervous that my suspicions will be confirmed but also scared that the test will be negative. If it is negative our two year search for the cause of my crazy blood work and symptoms will still have not answers. I am so so so sick of hearing "there is definitely some underlying systemic inflammatory condition. You are a complex case."
Roxy…take a deep breath, relax and give it all to God. Whatever will be, will be…either way. In the meantime occupy you mind with something else. I totally understand the unnerving period of waiting. 
Roxy, I know it’s hard to wait but as my very awesome doctor told me, it doesn’t really matter which disease you have because many of the medications used to treat them are the same. Have your doctors started you on any kind of medications yet? If they know it’s some kind of autoimmune issue then they should be able to start you on some medication regimen. I don’t really pay attention to lab results since mine never correlate with how I feel. I could be feeling great and have horrible test results or feeling awful and have great results. Sending peace and calm your way, Annemarie
It seems like I have been playing the waiting game for years! I just wanted a diagnosis and a name for why I felt so bad all of the time. Now I wish I had dealt with it better. I knew I didn't have anything life threatening and I did have meds that treated the symptoms enough for me to function better, but I felt I wasted too much time waiting and worrying.
Within the last week my life has turned upside down. I found a lump in my breast, had the ultrasound, had a biopsy, and was told I have cancer and needed surgery right away. My perspective has definitely changed.
My advice is the same as Flygirl's. Take a deep breath and do something fun! Enjoy today.
Hugs!!
Artchick I hope you have a good result from your surgery. A coworker is a 4 year survivor and still fine
Artchick, I’m so sorry about your diagnosis. My sister battled it about 6 years ago. She was stage 2 when they found it. She had a lumpectomy and chemo and is still going strong. I hope that you educate yourself thoroughly before making any decisions. Good luck on your surgery and I hope you recover as quickly as possible. Best wishes, Annemarie
Thinking of you Artchick & hoping like mad things go well for you. Kaz xo
artchick said:
It seems like I have been playing the waiting game for years! I just wanted a diagnosis and a name for why I felt so bad all of the time. Now I wish I had dealt with it better. I knew I didn't have anything life threatening and I did have meds that treated the symptoms enough for me to function better, but I felt I wasted too much time waiting and worrying.
Within the last week my life has turned upside down. I found a lump in my breast, had the ultrasound, had a biopsy, and was told I have cancer and needed surgery right away. My perspective has definitely changed.
My advice is the same as Flygirl's. Take a deep breath and do something fun! Enjoy today.
Hugs!!
Thanks everyone! I am blessed to have you guys for support.
That being said, Roxy, have you heard anything yet? I hope you get answers. My new rheumy doesn't think mine is lupus because tests show I'm fine. But, I was on plaquenil for 2 years before I met with him. argh...
It seems the life of an autoimmune person is a daily roller coaster.
Soft hugs and warm wishes!
The lip biopsy was negative; however the eye doctor confirmed reduced tear production. I guess that I just have to get used to not having a definitive dx. My formulated plaquenil is being sent to me and I should receive it tomorrow. Now I have to fight my insurance company because they don't cover formulated prescriptions
Hi! I know what you mean. It is such a trouble moment waiting on someone to call you? I am right along with you-really don’t like waiting!! My prayers go out to you!..Beverly L.
I will see the rheumatologist later today to see what sense she can make of everything. My compounded plaquenil will arrive today. I am trying to prepare myself to hear that the results are still inconclusive. I just hate taking medication based upon only symptoms when the dx is still so nebulous. I am so sick of breaking out in sweats when everyone else is cold.