There Must Be A Better Way
6:45 am: My current RA treatment isn’t working. I have an appointment with my rheumatologist next week to figure out what to try next, but in the meantime I am waking up in a ridiculous amount of pain every morning. Just getting out of bed and taking care of myself feels nearly impossible some days. Thank goodness I have my husband’s help to get our two boys, ages 2.5 years and 5 months, dressed, fed, and loaded into my car.
8:08 am: I arrive at the preschool my older son attends two days a week so that I can work part time to help make ends meet for our family. Childcare is ridiculously expensive, so I have to be extremely efficient during my two precious work days – otherwise I barely make enough money to cover the cost of his tuition, let alone pay any bills. I need to walk my son to his classroom, but I can’t leave the baby in the car. So I get out the stroller and wince as I lift the heavy car seat out of the car. We drop off big brother and I somehow manage to get the baby back in the car despite the pain in my wrists.
8:37 am: We arrive at my mom’s house, where I will leave the baby for the day so I can work. I am beyond lucky that my mom is willing to watch him once a week so that we don’t have to pay for expensive infant care too. With both kids taken care of, I finally take a look at my to do list. I have so much to do but I am in so much pain. Yesterday I told my rheumatologist that the prescription anti-inflammatory he had given me wasn’t helping, so he wrote me a new prescription to hold me over until our appointment. I know that I won’t be able to get anything done today without taking the medication first. Unfortunately, it’s not just a matter of swinging by the pharmacy on my way home. My rheumatologist decided that the best medication for me right now would be hydrocodone, and a new law that went into effect in October 2014 makes this medication much more difficult for me to get.
9:04 am: After driving 10 miles, I arrive at my rheumatologist’s office. The new law requires me to pick up a paper prescription from my doctor, signed in red pen, and hand deliver it to the pharmacy. So first I have to go pick up the paper.
9:25 am: I drive another 10 miles to the pharmacy, passing my son’s preschool again on the way. I hand over the prescription and I also have to show my ID. The pharmacy is empty – no one in line, no one waiting – but I’m still told the prescription will take half an hour to fill.
10:04 am: My prescription is finally ready for pickup. In order to get the medication my doctor recommended for me, the medication I currently need to help with my pain so that I can get my work done and pay my family’s bills, I had to drive 20 miles and spend an hour and a half of my precious, expensive, extremely limited child-free work time. The law also does not allow for refills on this prescription, so if I need to get a refill I’ll have to go through this process all over again.
I do understand that the Drug Enforcement Agency is trying to discourage abuse and encourage better monitoring of people taking these potent medications, but I just can’t help thinking that there must be a better way. The burden that this new law places on legitimate use of legally prescribed medications seems absurd – particularly since the burden is being placed on people who are already dealing with a lot of pain in the first place.
And, even though I had to drive and take up a lot of my time, all while I was in pain, I am one of the lucky ones because I had help. My husband helped me get the boys out the door so that I could fight through the worst of my morning pain – what if I was a single mother and had to do that all on my own? And my mother helps by watching our baby for free – but what if I was paying for expensive childcare for both children while trying to get my medication? Or what if I didn’t have childcare at all and I needed to bring both children with me? I would have to wrestle two children in and out of the car at the doctor’s office and at the pharmacy, which would have taken me twice as long. I also would have had to entertain my kids while I waited half an hour for the prescription to be ready. Or what if I worked full time? I would have had to take time off from work to pick up the paper prescription during the hours my doctor’s office is open. It seems to me that the burden is only bigger on patients who don’t have any help.
There must be a better way.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?