I'd love to go off about the day and complain how bad it was to be on the phone with my insurance company all morning begging and pleading with them to actually approve the full body ct scan that my oncologist wanted done. But good old insurance company GHI decided that it wasn't quite "medically necessary" enough, and that they will proceed with the ct scan of the soft tissue of my neck only, followed by an xray or my chest. My oncologist even went as far as to get on the phone with the head of the medical directing staff at GHI and tell the her reasoning that it be done, onan asap basis, but to no avail, they will not do it. I was told that if the insurance company finds anything remotely suspicious from the chest xray, (which when looking for very little cancer cells, I highly doubt they will find), they may then go ahead and approve the remainder form the ct scans, maybe one at a time. But it's a big maybe at this point.
I have a hard time believing that this procedure, a full body ct scan, for someone that is even kind of suspect of having lymphoma, would not be a medical necessity. But then again, in the scope of the entire matter, GHI not fronting any unnecessary money towards my medical care and diagnosis is by far more important than treating whatever debilitating disease that i have at this point. But an illegal immigrant can walk into an ER at any hospital they choose and pop out twenty babies because they don't feel like wearing a condom, and we taxpayers have to foot the bill for this. I have private insurance and they won't even approve a simple procedure like a ct scan to figure out which lymph nodes are the best to harvest for the biopsy to see if I have friggin cancer. But that is an argument for another day. Maybe another lifetime.
So tomorrow I am going to have the neck ct scan as well as the chest xray and the medical examiner will read the reports and films and let me know if its ok to proceed with the rest of the trusting that my oncologist desperately wants done. I have a sneaking suspicion that there will be a law suit in sit really soon. It's not exactly like I want cosmetic botox after all. It really kind of is a life and death issue, one in which every day that passes could be critical.
Ironicly yesterday I posted about my amazing group of doctors, which I still have strong feelings for. I like most of them but I am pretty certain after the oh-my-god-you-are-kidding appointment I just had with rheumy Cohen, I will not be staying with his practice any longer. Bedside manner...NONE. He told my mother, who drives me to all of my appointments because my joints hurt too much to drive, not to allow me to read anything about Stills Disease, lymphoma, or anything else medical. He wanted to make sure I didn't educate myself about what is going on in my own body! Not to mention I'm a 28 year old married woman, my mom can't keep me off the Internet, nor would she want to! F that.
On the way out of the office, I quickly asked for copies of all of my records, evaluations, and blood workups so that I could hand them to all of my doctors. I figure the more people looking into those mystery diagnosis, the better, and I want them all to have the same information. As I looked through the records on my way home, I noticed in the "diagnosis" section, he had typed in Definite Stills Disease! Just to make it completely clear to everyone, Stills or AOSD is a clinical diagnosis, meaning, there are no specific tests that say you have stills or not, like what you would find with HIV where if the blood test is positive, you have it. With AOSD "all other diseases must first be ruled out before a definite diagnosis can be made" - Cush, MD. Dr. Cush, who is based out of Texas is the USs leading rheumy on AOSD. He's the go to guy. So my point is, I'm not going back to this anti-Internet anti-self awareness doctor again. I'm going to get a referral from http://www.stillsdisease.org/ And my pain management doctor. Anyone can be better than this idiot.