My doctors nurse came into the room and after she did my vitals I asked her the all important question, "have you heard from Medicaid,whether they approved me for Benlysta"? She pulled up my electronic records and didn't see anything in my chart. As luck would have it, I received an email from "Jay Tran" from medicaid, as we were looking at my chart. [I would never use a persons actual identity, but in this instance I am because of the importance and ignorance of our government. "Jay Tran" indicated his office required "1" important document from my rheumatologists office and his office would approve Benlysta for my Lupus treatment. This document is the pre-authorization form that was already sent to his office on October 2nd; I was looking at it. My nurse agreed to send the pre-authorization form again.
I told my nurse I would keep in contact with her and she with me.
As the month went on, Thanksgiving closed in and I was busy and forgot to call. Then the flu season hit us all; hard. Having 2 small school-aged children who are a breeding ground for germs it's easy to get sick; for me at least (no immunity). Each time I took them to the doctor or to urgent care I'd end up getting sick 3-4 days after; like clock work!
There were many days that I was sick either from Lupus or from a sinus infection, cold or the flu. Either way I was miserable and calling the doctors office or sending an email was the last thing on my mind. I would even go 2-3 days without showering because my body felt like it was had been hit by a Mac Truck. No, I have not actually ever been hit by any sort of truck, but I can only imagine and it really did feel like I had been hit by one. There were days that I actually struggled to get off the couch or out of bed to get dressed.
After Christmas and the new year rolled around, I did remember about trying to get approved for Benlysta. But, I had so many other personal things going on and the stress of that was getting to me and causing flares. I would actually feel joints swell as I sat. I could hear the blood pressure in my heard/ears from my migraines. As this was happening to my body, I though to myself, "I wonder if Jay Tran has anyone in his family that is chronically ill"? "I wonder if he would like to see then suffer without medication"? I highly doubt anyone with good common sense would like to see a loved one suffer with pain or discomfort!
That's the irony of all of this. When you're on the opposite end of things, "YOU" don't see what the other people are going through or you don't want to or can't. Whichever it is, please take off your blinders. It's just not right.
Today was another 2 month follow-up visit. My nurse said she did send in the pre-authorization form as "Jay Tran" requested. Now, he is requesting my original lab work, from when I was originally diagnosed (former rheumy) that indicates I have Lupus (positive ANA), current lab work, letter from my doctor, medication that I have been on, and the medication I am currently taking. It's almost like they keep asking for more information in hopes that we'll give up. I am beyond frustrated with the bureaucracy of Medicaid http://medicaid.gov/ and the idiocy of some of the people they employ.
I will not give up. I'm not a quitter. I'm a fighter, a warrior full of courage. If they won't hear this for me, then they better hear this for someone else because I won't stop speaking up.
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