Irony, idiots and agitation.

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.

It's who you know, after all.

I'm one of the lucky ones (take that statement as you wish), that is fortunate enough to be in tune with my health, and has gone well out of the general powers that be, to create an unusually complex and thorough medical team of specialists, doctors, dentists and hospitals for myself. Not to push an elbow into his side or anything, but you can compare this with my husband, Matt, who hasn't even seen a regular MD or DDS for a check up or cleaning for, well, since I've known him actually. But I don't want to get started on that.

My point here is that this group of people are all interconnected by me, as their patient. They all correspond, all compare notes, and all work as a team to provide me with the utmost medical care possible, which I believe is saving my life. I'm not trying to kiss any ass here, but it's kind of a cry to people out there, whoever one day may stumble upon this maybe long lived, maybe short, blog, to take a full fledged interest in your health and go seek specialists in different fields if you have even the slightest inkling that something may be even a little bit not right. If you have found yourself a good doctor, they will want to work with your existing doctors to provide you the best care possible. Regardless if they share hospital affiliation, degrees or friends.

My doctors know me on a first name basis, as do their entire staff. Dr. Weingarten, my pain management doctor, and his associate Lou Malesardi know me by just Miranda, and could probably recite my chart verbatim if the need was there. And they see hundreds of patients. I know my specific medical biller in their office, as well as the lovely Marissa who books special procedures and god knows what else, Carolina, the most lovely office worker ever, the office manager, Robin, whom I have her private number on my speed dial, and that is just the beginning. This one office alone has done so much for me in the past, helping me to get through so much suffering that was caused by my spinal problems that I really do know that I couldn't have made it this far without them working with me. Not long ago, Dr. Lou, for the second time, got on the phone with my psychologist, Dr.DeSarbo, who was rxing me Chantix, to stop smoking, and my amazing pharmacist, Harvey Staub of Diamond Drugs, and figured out that the new medication was interacting with the opiate pain killers i was taking and metabolizing them too quickly, sending me into severe withdrawals. Dr.Lou, and Harvey didnt have to do this, it really wasnt their problem, but as always, they went out of their way to help. And that is just one example of my over ten specialists, working together to better my health and make my misery a little less.

I know there will be so many more stories of the kindness of my doctors in the near future. I know I'll here another collaboration story tomorrow when I see Dr. Cohen, my rheumatoligist, who I know was on the phone with my new oncologist yesterday for a while, who will soon be in contact with my PCP Dr Kanterman, who initially sent me to Dr. Cohen when he found the abnormal blood work, that was provoked by my gyno, Dr. Cucco, because I had lost my menses months and months ago.

It's so important to be an advocate for yourself with your healthcare, no matter how healthy you seem to be, or even feel. Again, I felt just lovely a few months ago and now my spleen is on the brink of rupture. You never know. Get started, seek out specialists, and get your doctors in touch with one another. Having doctors advocate for you is even more important than speaking up for yourself, they have some major pull, and it really is all about who you know, after all.