Well, as most of you know, I was diagnosed with Multiple Sclerosis on December 2nd, 2018. I have so much to say about MS, and all that life with MS entails. I understand that constantly posting about it on social media is obnoxious, so I figured I would blog my story, my journey and everything in between for those who want to follow along.
I know most of you have heard my story about diagnosis, but for those of you who haven't - here it is.
On November 28, 2018, I woke up and had some minor numbness and tingling in my feet. As a mom, my first thought was, "Ain't nobody got time for that," so I brushed it off and figured I must be getting a virus of some sorts. On November 29th, the numbness and tingling had worsened and traveled up to my peri area. As a Registered Nurse, I figured I must have slipped something in my back while skiing the weekend before, so I made an appointment with my primary care office. I saw a covering doctor that visit. As a young, otherwise healthy woman, I was brushed off and told I probably had anxiety or "Conversion Disorder." Look that up - it's pathetic. I never had a single x-ray, CT scan or imaging. She ran the most basic blood tests on me and called it a day. On November 30th, the numbness and tingling was much worse. I was at work with a bunch of other nurses. Our crude sense of humor had us joking about what could be wrong with me, "Maybe you have a brain tumor! Maybe it's ALS! Maybe it's MS." Sick and twisted sense of humor us nurses have. However, they convinced me when leaving work that night that I needed a trip to the ER.
When I arrived at the South Shore Hospital ER, I immediately saw Dr. Sullivan. He was a young guy, so I figured, here we go again - another anxiety diagnosis. However, as soon as he examined me, he knew I needed imaging. He called the neurologist who told him I needed a STAT MRI and if they couldn't get it done immediately at SSH, I needed to be sent into Boston. My family knew I was in the ER, but I told them not to come in. I thought I would be told that I slipped a disc, to follow up with Neurosurg and be sent home - I was wrong. I was taken to MRI and seen by neurology very quickly. I had a complete spinal MRI and was in the machine for 2+ hours. My MRI was read in 10 minutes and Dr. Sullivan was back at my bedside. Dr. Sullivan told me they found a "lesion" on my spine. He said it was right at my T8 level, and that while it could just be something called transverse myelitis, they also couldn't rule Multiple Sclerosis out.
MULTIPLE SCLEROSIS? Was this a joke? I am 33, healthy, a mom of 3 kids, a wife, a daughter, a nurse, a daughter in law, a friend, an aunt, a godmother, a cousin, and a niece. I did not have time or patience for MS in my life. I remember calling my husband, Mike, who laughed and said, "There is no way it's MS, that's insane. You're healthy!" They put on a brave front and told me it was probably nothing, but my family was worried.
I was given 1000mg of IV steroids, didn't sleep all night, and in the morning, my friends from my floor (shout out to Emerson 5!) got me transferred up to a private room there. I was examined by a neurologist and medical doctor. A decision was made that I would be sent to Brigham and Women's Hospital in Boston. I was relieved. My brother, mom, sister in law and husband were there. My SIL, Ashley (my ANGEL), rode in the ambulance with me to BWH, my brother, Brian, and Mike met us there. I was immediately given a lumbar puncture and sent for a brain MRI. By the time I was done it was close to midnight.
On December 2nd, 2019, I heard a doctor tell me, "You have multiple sclerosis." I had multiple lesions in my brain, the lesion at T8 in my spine and they were still waiting on the lab work from my lumbar puncture which would eventually tell them I had cells in my spinal fluid only associated with MS. Mike, Brian and Ashley were in the room - there were no dry eyes. For those of you unfamiliar with the disease of Multiple Sclerosis, the National MS Society describes it as: Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. I would love for you to go to this link and learn a little more about MS.
I had no idea what this meant for my life. I couldn't tell my parents because I wasn't ready to hear their reactions. How do you feel finding out your daughter has MS? I can't even imagine. My brother made those phone calls for me and I am thankful I didn't have to hear the shock in their voices.
The weekend before my diagnosis, I was with my family in Maine skiing; by the day of my diagnosis, I could no longer walk. I spent the next 3 days in the hospital receiving high dose IV steroids, being put on new medications to manage my symptoms, and educating myself about MS. One of my doctor's there recommended my neurologist to me. He works in the MS Clinic at BWH, and Dr. Kimbrough would become my MS lifeline.
My family was at my bedside every waking moment. My brother and SIL drove up from RI to stay with me from when the sun rose to well after sunset. My husband balanced time between our kids and myself. My Mom, Dad, Sue and my MIL Susan were there to lend their support, but my biggest ally was my cousin, Steve. Before I was even transferred to BWH, he was on a plane up here from his home in Florida. He never left my side. My village was large, my village was needed and my village gave me hope.
The purpose of this blog is to shed some light on being a 33-year-old mother of 3 living with MS. I will share my journey, what inspires me, what makes me crazy, and I hope to bring awareness through education to my disease. I've found many MS blogs since my diagnosis, but I haven't found one written by a Mom, so I want to fill that void.
I know most of you have heard my story about diagnosis, but for those of you who haven't - here it is.
On November 28, 2018, I woke up and had some minor numbness and tingling in my feet. As a mom, my first thought was, "Ain't nobody got time for that," so I brushed it off and figured I must be getting a virus of some sorts. On November 29th, the numbness and tingling had worsened and traveled up to my peri area. As a Registered Nurse, I figured I must have slipped something in my back while skiing the weekend before, so I made an appointment with my primary care office. I saw a covering doctor that visit. As a young, otherwise healthy woman, I was brushed off and told I probably had anxiety or "Conversion Disorder." Look that up - it's pathetic. I never had a single x-ray, CT scan or imaging. She ran the most basic blood tests on me and called it a day. On November 30th, the numbness and tingling was much worse. I was at work with a bunch of other nurses. Our crude sense of humor had us joking about what could be wrong with me, "Maybe you have a brain tumor! Maybe it's ALS! Maybe it's MS." Sick and twisted sense of humor us nurses have. However, they convinced me when leaving work that night that I needed a trip to the ER.
When I arrived at the South Shore Hospital ER, I immediately saw Dr. Sullivan. He was a young guy, so I figured, here we go again - another anxiety diagnosis. However, as soon as he examined me, he knew I needed imaging. He called the neurologist who told him I needed a STAT MRI and if they couldn't get it done immediately at SSH, I needed to be sent into Boston. My family knew I was in the ER, but I told them not to come in. I thought I would be told that I slipped a disc, to follow up with Neurosurg and be sent home - I was wrong. I was taken to MRI and seen by neurology very quickly. I had a complete spinal MRI and was in the machine for 2+ hours. My MRI was read in 10 minutes and Dr. Sullivan was back at my bedside. Dr. Sullivan told me they found a "lesion" on my spine. He said it was right at my T8 level, and that while it could just be something called transverse myelitis, they also couldn't rule Multiple Sclerosis out.
MULTIPLE SCLEROSIS? Was this a joke? I am 33, healthy, a mom of 3 kids, a wife, a daughter, a nurse, a daughter in law, a friend, an aunt, a godmother, a cousin, and a niece. I did not have time or patience for MS in my life. I remember calling my husband, Mike, who laughed and said, "There is no way it's MS, that's insane. You're healthy!" They put on a brave front and told me it was probably nothing, but my family was worried.
I was given 1000mg of IV steroids, didn't sleep all night, and in the morning, my friends from my floor (shout out to Emerson 5!) got me transferred up to a private room there. I was examined by a neurologist and medical doctor. A decision was made that I would be sent to Brigham and Women's Hospital in Boston. I was relieved. My brother, mom, sister in law and husband were there. My SIL, Ashley (my ANGEL), rode in the ambulance with me to BWH, my brother, Brian, and Mike met us there. I was immediately given a lumbar puncture and sent for a brain MRI. By the time I was done it was close to midnight.
On December 2nd, 2019, I heard a doctor tell me, "You have multiple sclerosis." I had multiple lesions in my brain, the lesion at T8 in my spine and they were still waiting on the lab work from my lumbar puncture which would eventually tell them I had cells in my spinal fluid only associated with MS. Mike, Brian and Ashley were in the room - there were no dry eyes. For those of you unfamiliar with the disease of Multiple Sclerosis, the National MS Society describes it as: Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. I would love for you to go to this link and learn a little more about MS.
I had no idea what this meant for my life. I couldn't tell my parents because I wasn't ready to hear their reactions. How do you feel finding out your daughter has MS? I can't even imagine. My brother made those phone calls for me and I am thankful I didn't have to hear the shock in their voices.
The weekend before my diagnosis, I was with my family in Maine skiing; by the day of my diagnosis, I could no longer walk. I spent the next 3 days in the hospital receiving high dose IV steroids, being put on new medications to manage my symptoms, and educating myself about MS. One of my doctor's there recommended my neurologist to me. He works in the MS Clinic at BWH, and Dr. Kimbrough would become my MS lifeline.
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| Skiing with my 3 kids the weekend before my diagnosis |
My family was at my bedside every waking moment. My brother and SIL drove up from RI to stay with me from when the sun rose to well after sunset. My husband balanced time between our kids and myself. My Mom, Dad, Sue and my MIL Susan were there to lend their support, but my biggest ally was my cousin, Steve. Before I was even transferred to BWH, he was on a plane up here from his home in Florida. He never left my side. My village was large, my village was needed and my village gave me hope.
The purpose of this blog is to shed some light on being a 33-year-old mother of 3 living with MS. I will share my journey, what inspires me, what makes me crazy, and I hope to bring awareness through education to my disease. I've found many MS blogs since my diagnosis, but I haven't found one written by a Mom, so I want to fill that void.
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