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.

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Comments

View Comments (12)
  • rhonda
    4 years ago

    It is awful what we have to go through to get a little relief. My rheumatologist is an hour away so I am spending about two to three hours and gas money to get my script if I need it. I know the law is there to try to end the abuse but it really sucks for those of us who need it and are not abusing it.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Rhonda ~
    That is super frustrating – and another perfect example of how this law puts extra burden on those of us who are the least able to bear it. Hang in there and remember that we are here to support you!
    ~Mariah~

  • Jennifer
    4 years ago

    Couldn’t have said it better myself. There are days I literally want to give up b/c of the pain and I feel like a drug addict asking for it b/c that’s how drs treat patients anymore. I’ve stayed the same question several times and I wish there was an answer. Mostly I think that drs need to monitor the people prescribed pain meds closely vs practically refusing to prescribe it and the abusers will get weeded out. I won’t even get into the desperate and unethical situation this puts desperate chronic pain sufferers in. It’s a vicious cycle and if anyone has any suggestions in who pose our concerns to as patients I’m more than willing to take the time to write whomever may listen. We have to complain as a group in vast numbers to be heard b/c it seems were not. I just discovered via my new pt paperwork that my pain dr does not prescribe several medications that I was hoping to try for pain management as it has been very successful in treating several of my RA family members. So, now you can’t even get pain meds from pain management!!! What’s next?? Doing away with pain meds? Yes, I’m very frustrated b/c my life and my families lives have been very adversely affected by my chronic suffering. So I am with you on “there HAS TO BE A BETTER WAY!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Jennifer ~
    I also feel reluctant to ask my doctor for pain medications – even though I know that HE knows I need it! Weird how that works, isn’t it? The stigma makes us feel guilty for things that we obviously need. You are right that patients need to advocate for ourselves – which can be so hard to do when we are in pain!
    ~Mariah~

  • tammie
    4 years ago

    Thank you Mariah so much for your story. The only difference between our stories is I was a single mom (my kids are grown now). These laws that govern my medical conditions are cruel. I get the fact that there is abuse with varies medications. I get the fact that monitoring is needed, however, I don’t want the government doing that. If my doctor knows of no other way of helping me control the amount of pain I feel, then that should be enough!! I suffer from an early onset of R.A. and osteoarthitis (spelling?) I have rods and screws in 15 vertabraes in my spine, using my hands is basically impossible! Can walk because the pain In my knees and feet. And I must go 20 miles to get a piece of paper from my doctor, then In a pharmacy, at times In tears, for a medication my doctor could send a fax for! How Is that right? Nobody should have the right to come in between my doctor and I!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Tammie~
    I think about single parents all the time when I am struggling – I have so much respect and admiration for how you persevere! And I agree – I can’t figure out how requiring me to hand-deliver a piece of paper is “more secure” than my doctor sending a fax directly to the pharmacy! So frustrating! I know how you feel. Hang in there and remember we are here to support you!
    ~Mariah~

  • Jill Fontana-Langthorne
    4 years ago

    I totally understand this issue. My husband has been the one helping get my daughter ready for school in the morning…thank God! It is definitely been a pain in the butt trying to get a simple Rx for hydrocodone that I have been taking for years when I need it. My rheumatologist wants me to go to pain management because she doesn’t write hydrocodone for me! And some doctors are charging more to write Schedule 2 meds! I get tired of people assuming that people with chronic pain who need medication are “addicts,” including people in my own family. Nobody knows this pain unless they have experienced it or understand it truly! There does have to be a better way!

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Jill~
    I think it must be a really difficult issue to legislate, but I do agree that there must be a better way! So glad to hear you have your husband to help you with your daughter. I know from experience that having a kiddo can make it so much harder to manage. Hang in there and remember that we are here to support you!
    ~Mariah~

  • Carolyn Haney
    4 years ago

    My Rheumotologist makes me come in and have a ” nurse visit” which I’m charged for, this is a “new” more efficient way to write my script for PERCOCET every month. It makes me feel like I’m being taken advantage of considering they used to let my husband drop by with my DL and pick it up?? I also think that our pain,time and money should be considered.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Carolyn ~
    It’s likely that your rheumatologist is just following the rules in the new law, which require lots of changes in how certain pain medications are prescribed. It is certainly frustrating for all of us! It would be nice if the interests of chronic pain patients could be considered more when these regulations are developed.
    ~Mariah~ (Site Moderator)

  • Pat
    4 years ago

    This is terrible for ALL who are in chronic pain. Even my rheumatologist won’t even write those prescriptions anymore. Just doubled the Tramadol I’m allowed every month (ha! Like it even makes a difference..) the one medical professional who understands and is willing to give them to me is the nurse practitioner at my GP ‘s office and the law won’t LET her write them anymore. She told me last week about conference she went to that was discussing this. She was furious that the entire presentation was about the addicts. She’s of the belief that people in pain don’t get addicted to the opiates and she also was the one who brought up RA as a diagnosis for my problems in the first place.
    There has got to be a way, even if we have to be registered within a database, and sign away any right to sue. I have to suck down Tramadol like skittles most days, where if I can take a Hydrocodone once a day before I have to get up and tackle the most physical chores, I can do much more. And there are days I don’t have to take it or Tramadol at all! There has got to be a way….
    If there was some way to get people to feel what we feel, there would be a bit more sympathy for us. I told my husband that the only thing I can equate to what I feel is the popping of chicken joints when you’re cutting it up to cook.

  • Mariah Z. Leach moderator author
    4 years ago

    Hi Pat ~
    I agree that this is so difficult for people who are living with chronic pain. And I personally can’t understand how taking a piece of paper to the pharmacy is “more secure” than if my doctor contacts the pharmacy directly! But since the law has been changed I guess the best thing we can do is find ways to work with the change – and try to raise awareness about the burdens it places on us.
    ~Mariah~

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