On Tuesday November 28th, I went for allergy testing, as I was having anphlactic reactions to cherries. I still laugh at the idea of being allergic of being not being able to eat it because it is so random. But for me, it severe, to the point I stop talking. The way you are tested is by a skin test, and I was reassured that there was little risk of going into anaphylactic reaction. Oh haiiii I was that girl that had to be the in the little risk category. The test revealed so many allergies, that my body went into heigh wire not only with an allergy attack which shocks your body. With CRPS its shocks your body to the extreme. Your body is extremely sensitive, especially to trauma. The trauma could be minor, but it could piss off the CRPS monster. It is not uncommon for one to go into a flare, after having multiple traumatic events occur.
I have learned how to identify which symptoms are related to CRPS, and the same with Dystonia, but this was a completely different kind of pain. The pain was going up my left flank, and down my groin and abdominal area. I had been having cramps for a couple of weeks, but I didn't think much of it. By Thursday evening I was hunched over vomiting and having the chills from the pain. I was struggling to urinate, and could feel so much pressure, along with shooting pain that would come and go. I was hunched over, and any time I moved I was in tears. My dad and I went to an urgent care, and they sent us immediately to the local hospital as the physician felt I had a kidney stone.
When I got to the closest ER, we tried to rule out a uti, but I wasn't able to give a sample. A cat scan was done as there was questioning about a kidney stone. The results came back negative, and I was discharged. I emailed my pcp, and got in to see her the next day. After I caught her up with my symptoms, she was concerned about my kidneys, bladder, and spine. She wanted me to be seen in the ER that was affiliated with the partners systems, and she didn't want to wait. She sent me to Faulkner.
When I was at Faulkner, I was greeted by a triage nurse who's voice was familiar. When I saw her face, I realized it was someone I grew up with in first grade, and we danced together. It was a little embarrassing to tell someone you know and haven't seen in years about your medical stuff, but it almost felt comforting when you're trying to remain calm. I'm thankful she was there, and she is truly an amazing human.
It will take time for the effects of the medications to get out of my system, and it has caused some unpleasant side effects that affected my internal organs. I was loosing sensations in areas of my body that was frightening, and this left the doctors nervous that neurosurgery may have to get involved. The doctors knew I was going to be admitted, but there was debate if I should be treated at Brigham and Woman's as I have specialists there. I remember crying as I was frustrated, and just wanted to go home. I remember my friend who was my triage nurse pop into my room right as she was about to head home off her shift. I caught her up with everything as tears are rolling down my eyes. She gave me the biggest hug, and reassured me that she was here if I needed anything.
It was recommended I be transferred to Brigham and Woman's. After being in the ER and having another cat scan performed, and was brought to a room three hours later. When meeting with the specialists, they were confident my SCS cords had migrated, and it was stimulating my abdomen and bladder. The down fall was they do not do work with the manufactuer that makes my specific stimulator. If this is what was occurring, then I was facing neurosurgery to correct the misplaced leads in my spinal cord. I don't remember much of this stay as I was heavily sedated with every form of oral and IV pain medication. I was unable to void, and would need to be straight cath'd every 6 hours
My pain doctor was contacted and a plan was made to be discharged Monday morning, and I would see him in clinic. As my dad and I listened to the nurse explain the discharge instructions, we were speechless. "If she is continuing to retain urine in 24 hours, go to the emergency room; Just not this hospital. When I was discharged I was retaining to the point of having severe abdominal and back pain. The only comfortable way to lay was in the fetal position. If this is what it feels like to have kids, I am not doing it!
When I was discharged, my dad drove me to my pain doctors office, my pain doctor was confused with what was going on, and why I was hunched over crying. We had explained what had happened at the previous admission/discharge and his response was priceless: "wait they discharged you and you can't pee. How the hell am I going to fix that?" He told us that he received a phone call that I needed an urgent appointment, but there was no communication about the situation. When I usually see him in a good mood and we talk about life, and this is the first time I saw him fuming and flustered about the situation. I've been seeing him since I was 19, and I call him Kramer as he looks like a mix of Kramer from Seinfeld and Al Pacino. Kramer explained that there was no way my leads could have migrated as they have been implanted for 7 years, and the scar tissue healed it to be in the proper places. He felt the hospital discharged me because it wasn't their programing they use, and there was nothing else they could to do to help. This was the best thing that could have been done. I described my symptoms of the severe amount of pain I had in my back,He was concerned that one of the discs was pressing or causing issues with my bladder. He admitted that my back issues were brushed under the rug and something was actually going on. When Kramer looked at my CT scans and reviews, he revealed that I had degenerative disc disease, and two herniated discs at my L4 and L5. 911 was called, and I was shipped off to Beth Israel as we were fearing my spine was compressing my bladder.
When I got to the ER, more tests were performed, and I was admitted. Neurosurgery was consulted and they said my spine wasn't pressing on anything. I had every medication in my system, but the two important medications were never provided for a week; these medications are for my anxiety, as well as my ADHD. When I am not on this meds, it is extremely noticeable; not only do I see a difference, but others can as well. These are two meds that should never be stopped cold turkey, and going through a traumatic event is probably the worst time these medications were stopped. I was a hot mess. I remember being in the bathroom trying to urinate, and if I couldn't I would need to have a foley to help. I called my therapist and bawled my eyes out of how scared I was. My mind was racing endlessly. There was so much unknown, and I was scared shitless. The neurologist that was assigned to my case suggested I should see the same neuropsychiatrst that first diagnosed me with a conversion disorder. This is a sensitive subject, and I have trust issues with doctors after what happened in the past. I have had so many doctors who have not believed my pain is real, and that has left me feeling guarded when I work with providers. Having flashbacks and severe anxiety without your medication is horrible. My head was spinning in every direction, and I felt depleted physically and mentally.
I met with the pain team on Wednesday, and it was agreed to stop any opioid pain medication and muscle relaxer that was being pumped into me. The doctor asked me what I use for pain control at home, and my response was medical marijuana and ketamine. We were talking about how beneficial these forms of treatment can be, and I told him about how much ketamine infusions helped me during college. The hospital did a way with infusions years ago, and it had to be rare circumstances to have it done on an inpatient level. The goal of the infusion was to reset my nervous system, and get it to a manageable level, so I could go home. After the physician spoke with another colleague who works closely with Kramer, it was recommended a 12 hour low dose ketamine infusion be administered. It was a difficult night as I was bombarded with visual and auditory hallucinations, as well as paranoia. The nurses taking care of me were fantastic, and were so kind and compassionate reassuring me I was okay. The nurses acted very quickly when the side effects were increasing, and the doctor responded as quick as he could. Within minutes I remember a nurse holding my arm reassuring me I was okay as she pushed a sedative to calm me down. I remember crying to her and saying thank you.
When I woke up in the morning, my infusion had a few hours left, and I felt so much better. I was in a complete haze, and the pain was tolerable. The pain doctor came in, and he sat down next to me and we were shooting the shit cracking jokes about the side effects I experienced, and was curious about the hallucinations I had and what was it that triggered them. He explained he expected me to be affected by the side effects, and he talked about how he made a very short clear message warning my nurses that this most likely would happen. I thanked him for making this infusion possible and we suggested that my upcoming surgeries Ketamine continues to be involved for pain management along with non-opoids medications, as I am hyper sensitive to opioids causing internal organs to not work properly or at all. These doctors were truly wonderful, and they both went over and beyond to make sure we could figure out a plan. You could tell from his mannerisms that he cares for his patients and wants to make a difference. After talking for a bit, he had a shit grin on his face wanting to know the details of what I could remember from the hallucinations. He had me hysterically laughing at what I could remember, and it is true when they laughter is the best medicine.
Before I was discharged, one of the pain doctor's asked if I was in counseling, and I was open and told her and her colleague I go weekly. It was recommended I increase my counseling sessions to a couple of times a week, as it may be beneficial to receive some extra support. As each day has passed since I was discharged, I am remembering more of what occurred, as the medication is slowly getting out of my system. It has been quite the rollercoaster, and I'm worn down physically, mentally, and emotionally. Since being discharged, I have been forcing myself to keep busy and moving continuously as I know the minute I stop to rest, the emotions take over, which is usually at night. It has been difficult to accept what I can't control, and learn to adapt, particularly obtaining to my health. I have been doubted for so long that my pain isn’t real, and I at times doubt myself that I’m over exaggerating about the intensity of the pain. I always wonder how can I suck it up a little more, and I’m realizing I can’t act tough anymore. I will always be strong, but I need to be open with myself and others about my fears with RSD and Dystonia.
I am starting to reach out to others about what has happened, as I know this is the time I need some extra support. My dad, brother, and sister in law were unbelievable during this time, checking on me daily keeping my spirits up, and being by my side through it all. I’m grateful for every person who checked in, even if I couldn’t respond back. Just knowing the amount of support I have, makes me realize I’m not alone in this journey. All the nurses I had were wonderful, and I have so much respect for anyone who is in the health care profession. I'm thankful that the pain team at Beth Israel for all they did, and advocated for what I needed.
I have learned how to identify which symptoms are related to CRPS, and the same with Dystonia, but this was a completely different kind of pain. The pain was going up my left flank, and down my groin and abdominal area. I had been having cramps for a couple of weeks, but I didn't think much of it. By Thursday evening I was hunched over vomiting and having the chills from the pain. I was struggling to urinate, and could feel so much pressure, along with shooting pain that would come and go. I was hunched over, and any time I moved I was in tears. My dad and I went to an urgent care, and they sent us immediately to the local hospital as the physician felt I had a kidney stone.
When I got to the closest ER, we tried to rule out a uti, but I wasn't able to give a sample. A cat scan was done as there was questioning about a kidney stone. The results came back negative, and I was discharged. I emailed my pcp, and got in to see her the next day. After I caught her up with my symptoms, she was concerned about my kidneys, bladder, and spine. She wanted me to be seen in the ER that was affiliated with the partners systems, and she didn't want to wait. She sent me to Faulkner.
When I was at Faulkner, I was greeted by a triage nurse who's voice was familiar. When I saw her face, I realized it was someone I grew up with in first grade, and we danced together. It was a little embarrassing to tell someone you know and haven't seen in years about your medical stuff, but it almost felt comforting when you're trying to remain calm. I'm thankful she was there, and she is truly an amazing human.
It will take time for the effects of the medications to get out of my system, and it has caused some unpleasant side effects that affected my internal organs. I was loosing sensations in areas of my body that was frightening, and this left the doctors nervous that neurosurgery may have to get involved. The doctors knew I was going to be admitted, but there was debate if I should be treated at Brigham and Woman's as I have specialists there. I remember crying as I was frustrated, and just wanted to go home. I remember my friend who was my triage nurse pop into my room right as she was about to head home off her shift. I caught her up with everything as tears are rolling down my eyes. She gave me the biggest hug, and reassured me that she was here if I needed anything.
It was recommended I be transferred to Brigham and Woman's. After being in the ER and having another cat scan performed, and was brought to a room three hours later. When meeting with the specialists, they were confident my SCS cords had migrated, and it was stimulating my abdomen and bladder. The down fall was they do not do work with the manufactuer that makes my specific stimulator. If this is what was occurring, then I was facing neurosurgery to correct the misplaced leads in my spinal cord. I don't remember much of this stay as I was heavily sedated with every form of oral and IV pain medication. I was unable to void, and would need to be straight cath'd every 6 hours
My pain doctor was contacted and a plan was made to be discharged Monday morning, and I would see him in clinic. As my dad and I listened to the nurse explain the discharge instructions, we were speechless. "If she is continuing to retain urine in 24 hours, go to the emergency room; Just not this hospital. When I was discharged I was retaining to the point of having severe abdominal and back pain. The only comfortable way to lay was in the fetal position. If this is what it feels like to have kids, I am not doing it!
When I was discharged, my dad drove me to my pain doctors office, my pain doctor was confused with what was going on, and why I was hunched over crying. We had explained what had happened at the previous admission/discharge and his response was priceless: "wait they discharged you and you can't pee. How the hell am I going to fix that?" He told us that he received a phone call that I needed an urgent appointment, but there was no communication about the situation. When I usually see him in a good mood and we talk about life, and this is the first time I saw him fuming and flustered about the situation. I've been seeing him since I was 19, and I call him Kramer as he looks like a mix of Kramer from Seinfeld and Al Pacino. Kramer explained that there was no way my leads could have migrated as they have been implanted for 7 years, and the scar tissue healed it to be in the proper places. He felt the hospital discharged me because it wasn't their programing they use, and there was nothing else they could to do to help. This was the best thing that could have been done. I described my symptoms of the severe amount of pain I had in my back,He was concerned that one of the discs was pressing or causing issues with my bladder. He admitted that my back issues were brushed under the rug and something was actually going on. When Kramer looked at my CT scans and reviews, he revealed that I had degenerative disc disease, and two herniated discs at my L4 and L5. 911 was called, and I was shipped off to Beth Israel as we were fearing my spine was compressing my bladder.
When I got to the ER, more tests were performed, and I was admitted. Neurosurgery was consulted and they said my spine wasn't pressing on anything. I had every medication in my system, but the two important medications were never provided for a week; these medications are for my anxiety, as well as my ADHD. When I am not on this meds, it is extremely noticeable; not only do I see a difference, but others can as well. These are two meds that should never be stopped cold turkey, and going through a traumatic event is probably the worst time these medications were stopped. I was a hot mess. I remember being in the bathroom trying to urinate, and if I couldn't I would need to have a foley to help. I called my therapist and bawled my eyes out of how scared I was. My mind was racing endlessly. There was so much unknown, and I was scared shitless. The neurologist that was assigned to my case suggested I should see the same neuropsychiatrst that first diagnosed me with a conversion disorder. This is a sensitive subject, and I have trust issues with doctors after what happened in the past. I have had so many doctors who have not believed my pain is real, and that has left me feeling guarded when I work with providers. Having flashbacks and severe anxiety without your medication is horrible. My head was spinning in every direction, and I felt depleted physically and mentally.
I met with the pain team on Wednesday, and it was agreed to stop any opioid pain medication and muscle relaxer that was being pumped into me. The doctor asked me what I use for pain control at home, and my response was medical marijuana and ketamine. We were talking about how beneficial these forms of treatment can be, and I told him about how much ketamine infusions helped me during college. The hospital did a way with infusions years ago, and it had to be rare circumstances to have it done on an inpatient level. The goal of the infusion was to reset my nervous system, and get it to a manageable level, so I could go home. After the physician spoke with another colleague who works closely with Kramer, it was recommended a 12 hour low dose ketamine infusion be administered. It was a difficult night as I was bombarded with visual and auditory hallucinations, as well as paranoia. The nurses taking care of me were fantastic, and were so kind and compassionate reassuring me I was okay. The nurses acted very quickly when the side effects were increasing, and the doctor responded as quick as he could. Within minutes I remember a nurse holding my arm reassuring me I was okay as she pushed a sedative to calm me down. I remember crying to her and saying thank you.
When I woke up in the morning, my infusion had a few hours left, and I felt so much better. I was in a complete haze, and the pain was tolerable. The pain doctor came in, and he sat down next to me and we were shooting the shit cracking jokes about the side effects I experienced, and was curious about the hallucinations I had and what was it that triggered them. He explained he expected me to be affected by the side effects, and he talked about how he made a very short clear message warning my nurses that this most likely would happen. I thanked him for making this infusion possible and we suggested that my upcoming surgeries Ketamine continues to be involved for pain management along with non-opoids medications, as I am hyper sensitive to opioids causing internal organs to not work properly or at all. These doctors were truly wonderful, and they both went over and beyond to make sure we could figure out a plan. You could tell from his mannerisms that he cares for his patients and wants to make a difference. After talking for a bit, he had a shit grin on his face wanting to know the details of what I could remember from the hallucinations. He had me hysterically laughing at what I could remember, and it is true when they laughter is the best medicine.
Before I was discharged, one of the pain doctor's asked if I was in counseling, and I was open and told her and her colleague I go weekly. It was recommended I increase my counseling sessions to a couple of times a week, as it may be beneficial to receive some extra support. As each day has passed since I was discharged, I am remembering more of what occurred, as the medication is slowly getting out of my system. It has been quite the rollercoaster, and I'm worn down physically, mentally, and emotionally. Since being discharged, I have been forcing myself to keep busy and moving continuously as I know the minute I stop to rest, the emotions take over, which is usually at night. It has been difficult to accept what I can't control, and learn to adapt, particularly obtaining to my health. I have been doubted for so long that my pain isn’t real, and I at times doubt myself that I’m over exaggerating about the intensity of the pain. I always wonder how can I suck it up a little more, and I’m realizing I can’t act tough anymore. I will always be strong, but I need to be open with myself and others about my fears with RSD and Dystonia.
I am starting to reach out to others about what has happened, as I know this is the time I need some extra support. My dad, brother, and sister in law were unbelievable during this time, checking on me daily keeping my spirits up, and being by my side through it all. I’m grateful for every person who checked in, even if I couldn’t respond back. Just knowing the amount of support I have, makes me realize I’m not alone in this journey. All the nurses I had were wonderful, and I have so much respect for anyone who is in the health care profession. I'm thankful that the pain team at Beth Israel for all they did, and advocated for what I needed.
