Some unwanted memories
To say I have struggled through some of this is an understatement. I will share with you just a few of the memories that really stand out. I have already shared "the night of terror" and how I was treated by a supervisor at work, nothing could compare to those. As time went on, other situations I exposed myself too, started to make me aware that I was different.
After I was injured in the second surgery and had difficulty walking, I had been invited to a birthday party of some friends. I always like to give special gifts so Phil and I went shopping all day to make sure the gifts were just that...special. I made up a couple special baskets for my friends. These were friends of many years. This was one of the first experiences realizing shopping had become a great difficulty. By the time I had got to the party, I was unable to walk, and my pain was at it's highest from shopping all day and using my legs. I was so excited to give my special gifts. I gave the gifts, but it didn't seem special to those friends, I will never forget how I felt that day as they stood in a tight circle so I could not get in and talk with them. I remember feeling as an "outcast" because I was no longer drinking, they did not spend much time talking and laughing with me. I found myself in the living room with the "older crowd", being "ignored" by those friends, and that's when I knew it was time to go home. I knew things were different. What hurt the most is the lack of appreciation that went into the gift I struggled so hard to put together.
ER visits became a struggle, once you are a chronic pain patient you become labeled as a "drug seeker" by some of the unknowledgeable Physicians out there. The ones I seemed to have struggled the most with are the PA's. I feel they do not have enough training in pain management and Palliative medicine to make judgments when meeting someone in the first ten minutes. I sought care at a local ER for the inflammation caused by my Arachnoiditis and made my symptoms become more severe. Remember, during this time, I was also suffering with the Bertolotti's Syndrome and Pudendal Neuralgia. You will not find an ER Physician knowledgable enough to know what either of these conditions are, let alone recognize how painful they can be. The PA walks into my room and before acknowledging me says "I see you just got 60 of your pain medications filled". Instead of advocating for myself, I think I cried, but my husband said "so, what does that have to do with anything". I believe we asked for my Neurosurgeon. I do not remember the sequence of events, but I do know how humiliating it can be, and it continued to happen. Until one day, when I began to speak up for myself and know my rights. The next time the PA said "we do not prescribe pain medication"before she even introduced herself or asked me why I was there. That was when I spoke up for myself, I do not remember my exact words to her, I spoke assertively, I made it clear I was not there for medications, I had a chronic illness, and acute illness I was attempting to get treatment for, I recited something off the Patient Bill of Rights, I told her I expected to be treated with dignity and respect and that I wanted to see an MD. She left the room, she came back, apologized, said she only looked briefly at my meds and had judged, so she went back and looked into the system (Allscripts) and noticed that I get my medication at the same time every month from the same place and by this she can tell I do not abuse my medications, and was not there "drug seeking". I spoke to her about my pain Dr, handed her his card and asked her to please call him because he knew I was there and had been struggling. Typically when on a pain contract you can not have narcotic medication given at an ER, my pain Physician and I have a very trusting relationship and I tell him each and every time I have been to any hospital/ER and I also have the Hospital Physicians call him. I have never over-used, abused, or mis-used my medications, the hospitals all have the AllScripts system to view when, where, and the last time I got my medication filled. This has no relevance to being in pain. I am not asking for a prescription to go home, I am asking for them to fix it, and each and every time, my imaging is abnormal, and most Physicians have never even heard of Arachnoiditis, Bertolotti's, or Pudendal Neuralgia, so how can any one of them tell me if my pain is valid or not, but if they look it up on their webpages the first thing they all say is "a painful condition". I have often brought my own documentation to show them. My Physicians practice out of St Joes Hospital, I have learned this is the best place to go if I need emergency care, and ask for them by name, as they are the ones who do not judge me and have the tools to help me.
After I was injured in the second surgery and had difficulty walking, I had been invited to a birthday party of some friends. I always like to give special gifts so Phil and I went shopping all day to make sure the gifts were just that...special. I made up a couple special baskets for my friends. These were friends of many years. This was one of the first experiences realizing shopping had become a great difficulty. By the time I had got to the party, I was unable to walk, and my pain was at it's highest from shopping all day and using my legs. I was so excited to give my special gifts. I gave the gifts, but it didn't seem special to those friends, I will never forget how I felt that day as they stood in a tight circle so I could not get in and talk with them. I remember feeling as an "outcast" because I was no longer drinking, they did not spend much time talking and laughing with me. I found myself in the living room with the "older crowd", being "ignored" by those friends, and that's when I knew it was time to go home. I knew things were different. What hurt the most is the lack of appreciation that went into the gift I struggled so hard to put together.
ER visits became a struggle, once you are a chronic pain patient you become labeled as a "drug seeker" by some of the unknowledgeable Physicians out there. The ones I seemed to have struggled the most with are the PA's. I feel they do not have enough training in pain management and Palliative medicine to make judgments when meeting someone in the first ten minutes. I sought care at a local ER for the inflammation caused by my Arachnoiditis and made my symptoms become more severe. Remember, during this time, I was also suffering with the Bertolotti's Syndrome and Pudendal Neuralgia. You will not find an ER Physician knowledgable enough to know what either of these conditions are, let alone recognize how painful they can be. The PA walks into my room and before acknowledging me says "I see you just got 60 of your pain medications filled". Instead of advocating for myself, I think I cried, but my husband said "so, what does that have to do with anything". I believe we asked for my Neurosurgeon. I do not remember the sequence of events, but I do know how humiliating it can be, and it continued to happen. Until one day, when I began to speak up for myself and know my rights. The next time the PA said "we do not prescribe pain medication"before she even introduced herself or asked me why I was there. That was when I spoke up for myself, I do not remember my exact words to her, I spoke assertively, I made it clear I was not there for medications, I had a chronic illness, and acute illness I was attempting to get treatment for, I recited something off the Patient Bill of Rights, I told her I expected to be treated with dignity and respect and that I wanted to see an MD. She left the room, she came back, apologized, said she only looked briefly at my meds and had judged, so she went back and looked into the system (Allscripts) and noticed that I get my medication at the same time every month from the same place and by this she can tell I do not abuse my medications, and was not there "drug seeking". I spoke to her about my pain Dr, handed her his card and asked her to please call him because he knew I was there and had been struggling. Typically when on a pain contract you can not have narcotic medication given at an ER, my pain Physician and I have a very trusting relationship and I tell him each and every time I have been to any hospital/ER and I also have the Hospital Physicians call him. I have never over-used, abused, or mis-used my medications, the hospitals all have the AllScripts system to view when, where, and the last time I got my medication filled. This has no relevance to being in pain. I am not asking for a prescription to go home, I am asking for them to fix it, and each and every time, my imaging is abnormal, and most Physicians have never even heard of Arachnoiditis, Bertolotti's, or Pudendal Neuralgia, so how can any one of them tell me if my pain is valid or not, but if they look it up on their webpages the first thing they all say is "a painful condition". I have often brought my own documentation to show them. My Physicians practice out of St Joes Hospital, I have learned this is the best place to go if I need emergency care, and ask for them by name, as they are the ones who do not judge me and have the tools to help me.
Comments
Post a Comment