Further, even though my lab orders are good for a year — and I need to have them drawn basically forever — the labs recognize them for only six months. So sometimes I have to get in touch with my doctor and get a new lab order. Often, they send over the old order, because they think it’s good for a year, in which case I have to go back to them and ask for a newly written one, because the lab won’t recognize the really-still-valid old one. Worse, they often just fax the order to the lab itself, thinking they’re helping me, so that I don’t realize they sent over an old one until I’m already there, and it’s too late.

After I get that sorted out, I have my blood drawn and analyzed. But because the laboratory and my doctor are in completely different health care systems, the lab results won’t show up in my doctor’s electronic database. I have to beg the lab to remember to fax over the results — using paper — which it often fails to do.

My next step is to check if the pharmacy I use is still under contract with my insurance plan. The medication I use needs to be ordered at a mail-order pharmacy, because my insurance won’t cover it at a local facility. My insurance plan has changed its mail-order pharmacy of choice more than once in the last few years, which necessitates that I inform my physician about the change.

I also have to open a new account with the new pharmacy and give it my payment information so that it can process everything once it has the order from the doctor. I do this before getting the prescription called in because I don’t want anything to get slowed down. This is a good time to explain that I can’t do much else ahead of time because the pharmacy and the insurance plan both know I have a three-month supply of the drug and won’t authorize me to get more too much in advance.

It’s at this point that I try to get in touch with my doctor, previously through a phone message, and more recently through an online site. If I’m lucky, which usually isn’t the case, the doctor will already have the lab results. If not, I have to go back to the lab and beg it again to fax over the results. If the doctor has the lab results, and they’re normal (they always are), a nurse will then call in the prescription. This usually takes a few days.

Then the pharmacy will finally start to move. Even that is painful. Once my drug was on “back order,” and since it was the only pharmacy I was permitted to go to, I just had to wait. It always takes at least a few days for me to get the drug, though, because processing takes time. I always, no matter how hard I try, run out of medicine before I get the new bottle, during which I hold my breath and hope nothing goes wrong.

I do this four times a year. It’s always a stressful time for me, and stress isn’t a good thing for a person with my disease.