I am a 40 something who has been living with lupus since 1998. When I was diagnosed, I was told to "get my life in order" because I should expect about 10 more years of life. At the time I thought that 10 years was a long time and was thankful to have that much of a future. I'm now well past that 10 years and I'm celebrating my life every day! Along the way I was blessed with an amazing boyfriend, Tim. Tim has modeled an active lifestyle that I have embraced and my lupus has loved.
Friday, April 20, 2012
Health Care Frustrations !!
My purpose in this blog is two fold: 1. To vent, and 2. To let fellow lupies know that they are not alone when it comes to health care frustrations.
Let me start by saying that I generally like my team of doctors. I expect a lot from my doctors and if they don't live up to my expectations, I fire them. Since my lupus diagnosis I have had 2 lupus doctors, 3 obgyn doctors, and 4 primary care physicians. I know that makes me sound like one big B****, but insurance and health care is expensive. I want the best for my money. I have learned that I have to be my own advocate!
So here comes my rant!
I find that all too often I have to diagnose myself and then convey the diagnosis to multiple doctors to be certain that the treatment doesn't conflict with a treatment or medication from another doctor. I have been having bladder issues that I mentioned previously. I want to a urologist on Thursday. His office was just switching over to electronic records. I told him how happy I was that my doctors would finally be able to share my records with the click of a mouse. Much to my dismay, he informed me that it won't work that way... yet. He went on to inform me that there are numerous ( I think he said about 24) vendors who are selling programs that meet the qualifications of the federal mandate which calls for all medical offices to switch over to electronic records. These 24 different programs do not communicate / share with each other, thus making it impossible for doctor A to share with doctor B in this new electronic age. My doctor then went on to explain that in order for his small office - 2 doctors, 1 nurse, 4 office staff -to afford this electronic upgrade, they had to merge with a larger office to cover expenses. This may explain why my co-pay went up from $20 to $40.
Backing up a bit - when I first was called back to the exam room, the nurse had a technology support specialist with her, training her how to use her new laptop. The first order of business was to renew prescriptions. The second order of business was to update medical history. The nurse said to me - I have you down as taking no medications, is that still correct ? In my head I'm thinking... ummmm no, do you not remember handing me the prescription? Okay, again I'm not upset with the person as much as the process. The computer training should have taken place out of the office, not with me. I was pretty sure that the nurse was seeing this program for the first time. The tech specialist was telling her, " now ask her.... " and so the nurse would repeat what the tech specialist had just said. I almost told her that she didn't need to repeat the question, but I wanted to seem as polite as I could so I just waited for the repeat and then answered. As if this wasn't enough, every question only had a place for her to mark "yes" or "no" and I the answer to each of my questions was "sometimes." For each question the tech specialist had to show her how to unlock the cells so that she would type my answer. When she left the room I felt like she maybe had learned how to sue the computer, but hadn't heard a word that I had said.
Back to the doctor. - At the end of our conversation he felt more comfortable with me seeing another specialist and proudly announced that since their two electronic systems possibly didn't communicate that he had faxed his notes over to the other specialist's office. I thanked him and wished him well in implementing his new system as he wished me good health.
I paid a $40 copay for... what...? ? ?
Saw second specialist today. - No lap top toting nurses.. we are off to a good start! I explain to her why I am there and ask if she has the notes from yesterday's visit.. she hasn't. Long story short - she can't find them so she calls to have them faxed again. The never arrive! Fortunately I had written down everything that the first doctor had suggested to me and was able to convey the information. Yay Dr ME !
For the purpose of sharing with other lupies - What's going on now ? - Since I started going through drug induced menopause around age 29, I have no estrogen to speak of at the tender age of.. mumbles incoherently . Parts of my body think that I am elderly and are extremely irritated by my physical activity. The solution - estrogen cream! I hope that in three months time, I will be as good as new, and my doctors will know how to use their computers!
End of rant! I feel better already! Oh.. did I mention the cost of the new med? ! ? Wow!