I have had it up to my eyeballs with my pain clinic. I have been going there for over 10 years, and it is with a big university hospital. Mainly, I have been happy with the care I have been getting there. But there is one bothersome problem that seems to be too big for them to resolve. And trust me, it’s not a big problem.
I am in too much pain to drive these days. Sitting is the issue. Due to inoperable spinal tumors, laying down is about the only position I can be in comfortably. I take a lot of pain medication, but I do alternative things as well, such as acupuncture, reiki, massage, etc. But all of these things only help for a few hours, at best. The pain medication keeps me at about a “7” on the 1-10 scale of pain. I use to live at a “5” but it keeps getting worse.
The pain medication is the issue. I am in too much pain to drive to the hospital to get it once a month….it’s a 45 minute drive from where I am, and that’s if the traffic is good. I already bug people to take me to doctor appointments, I can’t keep asking for help with this, especially when the answer is simple. For 10 years, they have been mailing my prescription to a pharmacy near me. For some unknown reason, it takes almost two and a half weeks to get to me. I’m guessing it sits in inner hospital mail hell until someone decides to take it outside to the mailbox or give it to the mail delivery person. Who knows.
When the nurse I’m dealing with started, I told her about this problem and said I need at least two weeks for me to get it on time. She told me she thought a week was plenty of time. I argued, but to no avail. Now she sees the problem, and has been ordering it earlier, but it still takes way too long and I stress about not having it when I need it. That would be the end of me, literally.
So I call every single time, telling them it hasn’t arrived, please mail another one. Today she said the only thing she could suggest is for me to come and get it. Who cares if I’m unable to, right? That is her solution. I suggest she simply drop it in the mailbox on her way out for the day. NO!!!! was the answer. “I have hundreds of patients” she said. I asked how many do it this way, and she said only a few. Most don’t want the middle man involved because of this problem. Well, if that’s the case , I thought, WHY CAN’T YOU MAIL IT YOURSELF. Is going the extra mile for ONE PERSON once a month that hard? I’m guessing she doesn’t mail her personal things from there because of this issue. SO MAIL IT WITH YOUR OWN BILLS THEN.
See, this is the people we have become. We do as little as we can get away with doing, and to hell with everybody else. She is going to mail it to me, instead of the pharmacy, and see if that helps. I don’t know how it will, but on the off chance it’s the pharmacy that’s the problem, that would fix it. But I know that’s not the issue.
The issue, is that it’s easier to blame the patient. It’s my fault I can’t get there. It’s my fault I need these drugs. It’s my fault I have these tumors. No one can fix me, so it’s easier to get mad at me. She won’t even read emails I have sent to her. She calls and yells at me about sending them, telling me to just talk to her. Why? She isn’t listening. But she isn’t reading, either.
A little kindness goes a long way. I’m sure she deals with people who are unreasonable, people who ask for these drugs when perhaps, they don’t need them. I am not them. I need them. I’m in REAL pain from REAL tumors that cannot be fixed.
And because I am the squeaky wheel, I have a big old red mark on my chart. If you don’t advocate for yourself, you get nothing. If you do advocate for yourself, you get a red mark on your chart. It’s a lose lose situation with health care in this country, and it’s getting worse.
Me? I just want some moments of being pain free. I can’t even remember what that’s like.
I am in too much pain to drive these days. Sitting is the issue. Due to inoperable spinal tumors, laying down is about the only position I can be in comfortably. I take a lot of pain medication, but I do alternative things as well, such as acupuncture, reiki, massage, etc. But all of these things only help for a few hours, at best. The pain medication keeps me at about a “7” on the 1-10 scale of pain. I use to live at a “5” but it keeps getting worse.
The pain medication is the issue. I am in too much pain to drive to the hospital to get it once a month….it’s a 45 minute drive from where I am, and that’s if the traffic is good. I already bug people to take me to doctor appointments, I can’t keep asking for help with this, especially when the answer is simple. For 10 years, they have been mailing my prescription to a pharmacy near me. For some unknown reason, it takes almost two and a half weeks to get to me. I’m guessing it sits in inner hospital mail hell until someone decides to take it outside to the mailbox or give it to the mail delivery person. Who knows.
When the nurse I’m dealing with started, I told her about this problem and said I need at least two weeks for me to get it on time. She told me she thought a week was plenty of time. I argued, but to no avail. Now she sees the problem, and has been ordering it earlier, but it still takes way too long and I stress about not having it when I need it. That would be the end of me, literally.
So I call every single time, telling them it hasn’t arrived, please mail another one. Today she said the only thing she could suggest is for me to come and get it. Who cares if I’m unable to, right? That is her solution. I suggest she simply drop it in the mailbox on her way out for the day. NO!!!! was the answer. “I have hundreds of patients” she said. I asked how many do it this way, and she said only a few. Most don’t want the middle man involved because of this problem. Well, if that’s the case , I thought, WHY CAN’T YOU MAIL IT YOURSELF. Is going the extra mile for ONE PERSON once a month that hard? I’m guessing she doesn’t mail her personal things from there because of this issue. SO MAIL IT WITH YOUR OWN BILLS THEN.
See, this is the people we have become. We do as little as we can get away with doing, and to hell with everybody else. She is going to mail it to me, instead of the pharmacy, and see if that helps. I don’t know how it will, but on the off chance it’s the pharmacy that’s the problem, that would fix it. But I know that’s not the issue.
The issue, is that it’s easier to blame the patient. It’s my fault I can’t get there. It’s my fault I need these drugs. It’s my fault I have these tumors. No one can fix me, so it’s easier to get mad at me. She won’t even read emails I have sent to her. She calls and yells at me about sending them, telling me to just talk to her. Why? She isn’t listening. But she isn’t reading, either.
A little kindness goes a long way. I’m sure she deals with people who are unreasonable, people who ask for these drugs when perhaps, they don’t need them. I am not them. I need them. I’m in REAL pain from REAL tumors that cannot be fixed.
And because I am the squeaky wheel, I have a big old red mark on my chart. If you don’t advocate for yourself, you get nothing. If you do advocate for yourself, you get a red mark on your chart. It’s a lose lose situation with health care in this country, and it’s getting worse.
Me? I just want some moments of being pain free. I can’t even remember what that’s like.