Jenny Coffey

@jenncoffey | contributor
Artist, former New Hampshire State Representative retired EMT, and two-time cancer survivor shares living with chronic illness and rare diseases. Stories discuss CRPS, Small fiber Neuropathy, Tamoxifen Retinopathy, and more.
Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

Reflecting on the Roe v. Wade Reversal on the 4th of July

I had nothing to celebrate this July 4th. It used to be my favorite holiday. My favorite years were driving the ambulance in the parade and having fun with the firefighters and police department. This time of year we were on duty, but able to enjoy it, and to have some laughs with each other. For the first time in my life, this holiday, the pride I used to feel, is just gone. Sometimes my brain feels numb, and other times I start to feel anxiety. It’s that sensation that you get right before a full-blown anxiety attack. My chest is tight, my neck feels full, and it becomes harder to take breaths. For the first time ever, I worry about having access to an IUD birth control device. I’ll tell you a secret. I haven’t had a cycle since 2013. When they told me that I had cancer again, I stopped having a cycle. My body literally just physiologically acted and shut down my long-broken oven. I would have loved to have been able to use it more than once. Are you surprised? Do you expect me to be against babies? The one thing I never got to do in EMS that I wanted to was “catch” a baby. I can’t tell you the number of heartbreaking miscarriages that I attended in my career. Back to the point. With the IUD, I have released a very low dose of hormone into my uterine walls. The use of this device has caused thinning of the walls, and decreasing in the adenomyosis that had occurred. One of my surgeons told me that his handprint stayed when he examined my “boggy” uterus during surgery. The amount of pain and suffering that I would go through at times, and the fact that I had already had cervical cancer, which cost me half of my cervix, left my reproductive organs far too broken. I need this for very real reasons. These laws are all ready to be written and enacted, to be introduced into states, and remove coverage for birth control such as IUDs. When I was in my 20s, I had polycystic ovaries, along with newly diagnosed endometriosis. The endo actually barred me from military service. I was in the hospital almost every month with ruptured cysts and horrific pain. I would internally bleed from the endo and fill the cul de sac with fluid from the ruptured cysts. The ones that didn’t rupture would move as I did, and bang into the insides of my body. The doctor put me on back-to-back pill packs. Yes, birth control pills, with the idea of preventing menstruation. I remember feeling humiliated, and so very small and dirty, when the pharmacist refused to fill the prescription. He said, “It goes against my religious beliefs.” He motioned for me to leave, as he waved my script back in my face in a rushed motion that I should take it from him, as if it would burn him if he held it any longer. I remember hiding “the pill” from the sight of others, worried about judgment even as I was wheeled out of work by an EMS crew with a ruptured ovarian cyst. I felt ashamed, as if my reproductive organs could be seen by others. It caused me to crumple to the floor in a fetal position. It felt like shards of glass trying to get out of my torso. Not only my abdomen, but my entire body revolted from the pain and tried to shut down. At least I didn’t puke, at least not at first. Let’s face it. I’ve never had it easy. I have fought against being sickly since I was a kid. All I seem to acquire these days are new diagnoses. The trouble with being chronically ill, especially with rare diseases, is there is never the achievement of a cure. The finality of being able to walk away from it all. It was hard enough when I didn’t have to worry about accessing the care that I needed to live. Now I have fear. The care that I have already sold my life to buy into gets harder and harder to access. Am I now on borrowed time? Will my access be harmed? I’ve talked about this before, from a different angle, most recently in my article, The Reality of Chronic Pain Care, on The Mighty. This year, I am a second-class citizen. I’ve long felt that way as is. I can’t access the same medical care that I gave. You think you have lived right until they can’t cure you. I have lost the right to have total control over my own body. It feels awful; damn, it feels unreal. Those in power claim to want to stop abortions, while simultaneously not investing in, but removing, birth control access, comprehensive free prenatal care, parental support, WIC, food stamps, housing, education, and so on. The far-right is working for more children to be born into an unsupported life of poverty. Can I tell you from personal experience that those people are assholes? Guess I just did. This is not politics as usual. This is stepping back in time, and women and people with a uterus are no longer equal. Forced pregnancy is disgusting and dirty. I still feel shocked. It feels like I am watching the birth of Gilead. In my freshman year of college, I read “The Handmaid’s Tale,” a work of fiction that now seems to be becoming real. This is the new America, and the birth of the underground railroad for women. That is what they have succeeded in creating. They have signed the death certificates in advance for countless women who will die by suicide, ingest poisons, and have backroom abortions. Most of those occur in private homes, typically affecting people of little means. Consistent with out-of-control religious patriarchy, the objective is clear — removing the right to abortion, access to birth control, and forcing procreation on women. None of this is hyperbole. This is real. Women shaming is already happening. I’ve seen so many social media posts with comments like, “keep your legs closed” and “don’t have sex outside of the bonds of matrimony.” I’m reminded of another Mighty writer, Seanín Hughes, who wrote, “In learning to become a woman, I learned our bodies are subject to social commentary, opinion, and judgment based on how successfully we strike the balance between prescribed function and aesthetic — and we remain at the mercy of those who have the power to tell us we are failing.” When we dress wrong, live wrong, or do something to cause sex to occur. The ability to feel, to enjoy intercourse without the intent to have children. We still fight against stigmas inflicted upon us and edicts we never signed on to follow, and are shamed for what our male counterparts are rewarded for. We are in a world that was on a great track to creating equality, one I took great pride in being a part of. Now, shamed and sad, I have lost my freedom, my Independence.

Jenny Coffey

The Problem With the Way Laws and the Press Treat CRPS

The media loves to hype up a television series and as of late, they have destroyed public perception of CRPS (complex regional pain syndrome), as well as the experimental treatment of ketamine infusions. One would hope for a rare disease to be represented respectfully. Unfortunately, that often doesn’t happen. In television shows, it seems that most people who have CRPS are portrayed as drug addicts. A case in point is the instance of a disease affecting a man on a television show, “Station 19.” His storyline quickly becomes one of an opioid addict, who still works in a high-stress, highly physical job as a firefighter. He is told that he will only be given pain medication for a little while and needs to simply consent to a surgery to “cure” his CRPS and send him back to working at the fire station. These lies can cost real lives. For the record, there is no surgery to “fix” CRPS. There is to date no approved treatment for CRPS. It’s the most painful disease known to modern medicine and is nicknamed the “suicide disease,” as it is so bad that it drives people to stop living. There is no magic surgery, and for some of us it is not limited to one limb. There is nothing left of me that is not affected. If you search, you will see over and over again the demonization of ketamine infusions, the only treatment that has been found to work for CRPS, but is still limited in use, as it is considered experimental. Patients and providers are fighting to fix that, but that search I suggested will come up with terms like “psychedelic,” “legal high,” “trip therapy,” and the list goes on. Each one of these inappropriate terms causes people to see patients as drug addicts. Patients are also seen as not really sick. I’m certainly not a skinny person, which is what many people expect to see when they hear “sick.” Ketamine infusions have been found to help other conditions also, such as depression. That being said, readers can understand how hard it is to deal with an invisible illness, never mind adding an experimental treatment. I have personally been told that I am on an “animal tranquilizer” and must be just an addict. I have never “craved” ketamine. For me, it is like chemotherapy. They sedate me for over four hours to give me the medicine. Despite our best efforts and added medication for nausea, I often vomit from the treatment. My multisystem illnesses are very hard to keep stable. Yet stable here I sit. So yes, about every six weeks, I submit myself to infusion therapy and spend the day feeling not so great in order to gain a few weeks of decreased symptoms, and keep the ability to walk. Without treatment, it takes only a couple of months for me to become unable to get out of bed. Facebook has now implemented a policy that the word “ketamine” is verboten. When I try to go to my support group, I see a warning about illicit drugs. It reads, “Are you sure you want to continue? If you or someone you know struggles with drug misuse, there are organizations that can help. The term you searched for is sometimes associated with the sale of drugs, which isn’t allowed on Facebook.” Two steps forward. one step back. We have to once again fight to be seen as patients and not as drug addicts. I can’t tell you how discouraging it is to have a rare, incurable disease and have the one treatment that works be demonized. My treatment support group can no longer even type the word “ketamine.” Our support group, made up of patients and providers, gets a strike if one of us uses the word. Now on Facebook, anyone talking about ketamine has been deemed potential drug users. For over a hundred years there has been no treatment for CRPS. We finally have one, but we can no longer talk about it online. We have to type practically in code to keep our group together, the group that has been a beacon of hope for people with a rare disease. There is a group of providers who are now fighting for all of us in America to not only have access to the treatment, but have it approved by the FDA. The first step in the process has already been submitted by the ketamine task force of providers. If you want to see more information on the taskforce, you can find it at ketaminetaskforce.com. Once the treatment is recognized, patients will have access to their treatments through medical insurance. Right now, almost every patient pays out of pocket in full for the treatment. Having a right to try a medication doesn’t mean that your insurance will cover one dime of it. For far too many, this life-saving treatment is financially out of reach. My personal doctor has told me to hold on; he is doing everything he can to get our treatment approved, to force insurance companies to cover the very treatment that keeps me and thousands of others alive. My doctor is the vice-president of the task force. I was floored when I realized that not only did my doctor not close his doors at the start of COVID. I will never be able to say enough about this man. He saved my life and helped countless others. State laws reflect some of the lies the media portrays. In some states, “cancer” is written into state statutes that regulate pain medications. It is written in black and white that the worst pain is cancer, while other patients with extreme pain are questioned. It’s horrific discrimination based on old-fashioned beliefs. Cancer pain can be horrible; I’ve had it twice, but laws need to be based on science. My own state of New Hampshire has it in statute that “cancer” is the worst pain, a lie that costs lives. You wonder why 70% of CRPS patients attempt or consider suicide? I don’t; I live it and lose parts of my soul every time I see another post memorializing a friend. There are positive movements. New Hampshire actually changed its laws in a positive direction. When I presented in front of the New Hampshire Senate Committee on Health and Human Services and I realized that the Chair, a doctor himself, was nodding in agreement with me, I cried. He understood that the McGill Pain Scale is the medically recognized way to measure pain. Things like childbirth without medication are scaled higher than a broken bone. Cancer is not the worst pain on the scale; CRPS is. The committee led the way and the bill was passed into law. In part, the new law creates exemptions to the prescribing rules for situations in which an opioid is being prescribed for the management of chronic pain. I hope that we as a species “get it” when it comes to following science, and not political or sensationalized news for understanding a medical condition. A girl can hope. CRPS is not terminal, but it can mean living with pain worse than amputating a limb. Medical science has no idea why CRPS happens, and in over 145 years since its discovery, how to cure it. It’s a life that is full of treatments and medications forever. Can we now recognize science and adjust to meet current knowledge? Stop teaching providers and citizens false narratives, and start insisting on the best care possible for anyone, no matter what the disease is. I fear that until we succeed in this, we will continue to lose lives to complex regional pain syndrome.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

You might hear me on the radio, maybe saying too much or sounding emotional about my medical care. About having illnesses with no known cures, which never get better, but do get worse. Knowing each loss of physical ability is never going to come back, unless or until there is a cure. I have very real years of things just like this, and worse, being done to me, to treat what has no approved treatment known to modern medicine. For the small fiber neuropathy and complex regional pain syndrome (CRPS) that medicine has been studying for over 145 years, there is no cure, and no FDA-approved treatment yet. This video is one of the hundreds of similar awful treatments that I used to have to endure (Warning: the video below contains a graphic medical images). I was also still having to take opioids and narcotics, just to manage taking a shower, but not much else. I lived barely in a haze, with torturous pain, and what now seems like a battery of medically medieval treatments. I barely functioned and had many moments when I didn’t want to be here anymore. Like 70% of folks with CRPS, I thought about suicide.  I thought that even I can’t be such a horrible person to deserve this, right? I got cancer a second time. It’s not my fault, yet I felt punished for existing. It is life-changing to now have humane treatments, where I never have to suffer. I never feel gaslighted, like I have to “suck it up.” I never cry out and feel the tears running into my ears, trying desperately not to move, silently screaming for it to stop. My partner, Matt, never hears me while sitting in the waiting room, screaming out in sudden and horrific pain. It could be a brief moment or several minutes. “You’re doing great, just a few more minutes.” I would hold my breath in an attempt to ease my pain, or at least hold in the screams. “You’re such a trooper; we’re almost there.” It’s up to me, right? This was treatment eight years ago, about every six weeks. This was treatment for about four years of my life, before doing everything I could to buy my way into “experimental” treatment. There was no sedation or comfort meds unless you count injecting numbing agents prior to the 12-inch needle insertions, most often through my abdomen. Would you look, watching the needles, or would you lay back, close your eyes, and submit to what has been presented as the “only” treatment option? [Warning: the following video contains a graphic medical images] When I talk about my doctor saving my life, I am dead serious. I have dignity now. I have hope for future discoveries. I have a provider who brings in cutting-edge treatment options. Hearing about something new is not unusual. I’ve created a quality life, with the ability to take pride in what I do. People I have helped, and continue to, help to remind me and validate me to keep fighting. They inspire me to keep writing and talking about medical care with dignity, narrative medicine, and expectations, and that we did nothing to deserve what violates our bodies, what causes my body to attack parts of itself. Treatments and infusions give me the ability to live, and I deserve to. We all do, and we, the forever sick, should not be defined by our illnesses. In our strengths, we endure and count as valuable members of society, contributing to society and deserving life. Humanity needs to be put back into the treatment of chronic pain, by having more doctors like the providers I have now. Supporting and asking for personalized palliative care. Advocating for comfort medications with treatments. Everyone is worthy of the best medical care there is, the most humane care possible. Medical equality has a long way to go.

Jenny Coffey

Bringing Humanity Into the Reality of Chronic Pain Care

You might hear me on the radio, maybe saying too much or sounding emotional about my medical care. About having illnesses with no known cures, which never get better, but do get worse. Knowing each loss of physical ability is never going to come back, unless or until there is a cure. I have very real years of things just like this, and worse, being done to me, to treat what has no approved treatment known to modern medicine. For the small fiber neuropathy and complex regional pain syndrome (CRPS) that medicine has been studying for over 145 years, there is no cure, and no FDA-approved treatment yet. This video is one of the hundreds of similar awful treatments that I used to have to endure (Warning: the video below contains a graphic medical images). I was also still having to take opioids and narcotics, just to manage taking a shower, but not much else. I lived barely in a haze, with torturous pain, and what now seems like a battery of medically medieval treatments. I barely functioned and had many moments when I didn’t want to be here anymore. Like 70% of folks with CRPS, I thought about suicide.  I thought that even I can’t be such a horrible person to deserve this, right? I got cancer a second time. It’s not my fault, yet I felt punished for existing. It is life-changing to now have humane treatments, where I never have to suffer. I never feel gaslighted, like I have to “suck it up.” I never cry out and feel the tears running into my ears, trying desperately not to move, silently screaming for it to stop. My partner, Matt, never hears me while sitting in the waiting room, screaming out in sudden and horrific pain. It could be a brief moment or several minutes. “You’re doing great, just a few more minutes.” I would hold my breath in an attempt to ease my pain, or at least hold in the screams. “You’re such a trooper; we’re almost there.” It’s up to me, right? This was treatment eight years ago, about every six weeks. This was treatment for about four years of my life, before doing everything I could to buy my way into “experimental” treatment. There was no sedation or comfort meds unless you count injecting numbing agents prior to the 12-inch needle insertions, most often through my abdomen. Would you look, watching the needles, or would you lay back, close your eyes, and submit to what has been presented as the “only” treatment option? [Warning: the following video contains a graphic medical images] When I talk about my doctor saving my life, I am dead serious. I have dignity now. I have hope for future discoveries. I have a provider who brings in cutting-edge treatment options. Hearing about something new is not unusual. I’ve created a quality life, with the ability to take pride in what I do. People I have helped, and continue to, help to remind me and validate me to keep fighting. They inspire me to keep writing and talking about medical care with dignity, narrative medicine, and expectations, and that we did nothing to deserve what violates our bodies, what causes my body to attack parts of itself. Treatments and infusions give me the ability to live, and I deserve to. We all do, and we, the forever sick, should not be defined by our illnesses. In our strengths, we endure and count as valuable members of society, contributing to society and deserving life. Humanity needs to be put back into the treatment of chronic pain, by having more doctors like the providers I have now. Supporting and asking for personalized palliative care. Advocating for comfort medications with treatments. Everyone is worthy of the best medical care there is, the most humane care possible. Medical equality has a long way to go.