It was Thursday, February 15, 2018, I was rushing around getting ready for work and getting my then four year old daughter, Mary, ready to go to the babysitters, my cousins, house. Off we were for a normal productive day, then while I was driving across town to drop Mary off, I suddenly became lightheaded, my vision became distorted and I could slowly feel my face begin to droop and my left side feeling tingly. I pulled up to the sitters house and barely made it out of the car. I had my daughter go up the few front steps to knock on the door. The sitter came to the door and realized that something terrible was happening. Her husband was home from work that day, so I begged her not to call 911 and startle the children and instead drive me to the hospital, which she did. By the time we pulled up to the doors of the emergency room, my left side had gone completely numb. A nurse came rushing out with a wheelchair and took me straight back for a CT scan, then MRI. As I laid on a gurney in the emergency room, awaiting results of the scans, the babysitter was standing next to me, gently rubbing my head, and wiping my tears as I thought "This is it. This time, whatever this is, it's going to leave a mark", she kept reassuring me that all will be ok and that she had called my family. The doctor came in and they set up a computer on a cart so they could video conference in live time with the stroke team at one of the bigger hospitals in Pittsburgh. They determined that I was not having an active stroke, but the stroke team doctor recommended they do another CT scan, this time with contrast and to get my carotid arteries as well. After the scan, the stroke team was sent my results. While laying on the gurney in the ER, I could hear the announcement for the ER doctor "Stroke team line 3", I knew that call was about me and what they thought. Next thing I knew, the ER doctor walked into the room and very gently, politely explained that I needed to be transferred to Pittsburgh because they had discovered I had a tiny tear in my right carotid artery that needed to be looked at further. I was so scared, but Jayson and my oldest son comforted me. My mother and my sister live five hundred miles away, but my son told me they had booked flights and were on their way.
The ambulance, transfer, ride to Pittsburgh from Greensburg was going to be a long hour or so drive. The medics arrived to pick me up. They got me ready for transport and told me it was rainy and cold outside, so they were going to bundle me up. they wrapped me in warm blankets, secured me to the stretcher, loaded me into the back of the ambulance and we were off. The ride was one of the longest, bumpiest, scary rides to the "Burgh" I ever had. I vividly remember two things about that ride: One, the headlights of my son's car as he followed behind the ambulance in his car. Two, the medic asking me if it was fully explained to me why I was being transferred and what to expect. I told told the medic that I was really not sure what was happening and why. He attempted to explain it to me, but I just didn't fully understand the seriousness or what was next to come.
After a long, rainy, foggy drive into Pittsburgh, we arrived at Mercy Hospital. I was taken into a room in the ER. I had never been to an ER in a big hospital with a level one trauma unit, so this was all new to me. It was loud. People were yelling for help, doctors and nurses were running seemingly a muck and it was just plain busy. Within several minutes I was greeted by a young, sweet, compassionate ER nurse. She immediately smiled at me, introduced herself and made me comfortable. It was then I realized the craziness of that ER was normal, busy and I realized this was how it was going to be until I was moved, after all I was going to be a direct admission, so how long could this all take?
Wednesday, March 27, 2019
How it all began... So I thought...
My Name is Jen,
This is how my journey with Functional Movement Disorder, FMD began:
It was Saturday morning, January 27, 2018, I woke up at 7:45am, got out of bed and felt a pain in the back of my right calf. I walked downstairs to get a shower and get ready for work, when the pain suddenly worsened and moved slowly up the right side of my body, by the time I walked into the bathroom and looked in the mirror, I realized my lip was drooping, I walked into the living room and asked my boyfriend, Jayson of my face was drooped, he agreed and my speech began to slur and my entire right side became numb. It was at that moment we realized that I was showing symptoms of a stroke, so he called 911.
An ambulance arrived shortly after the call was made and off to the hospital I went. Shortly upon arriving at the hospital, I was being admitted for further testing. The next morning I was greeted by a neurologist, who explained that he saw something on the MRI that was not supposed to be there and that I needed to have a repeat MRI to see what, if anything else was happening. I had a second MRI first thing that Monday morning and the spot the neurologist saw was still there. I was diagnosed with a small stroke and a blood clotting disorder known as factor 5 Leiden mutation. Upon being discharged, I was told to follow up with him and my primary care doctor.
In the days that followed I had my follow up appointments and had developed a terrible headache, in fact the worst headache I had ever had, that absolutely no pain medication could touch. The pain was across my entire forehead, it went in a horseshoe shape from ear to ear, if you have ever bumped your forehead on the door of the car when getting in or hitting your head off a cabinet door that you accidentally left open, that was the pain I felt. The headache lasted for two months before finally letting up a bit and eventually, several months later, weakened off enough that I no longer had it.
Two weeks after my first stroke, I was told I could return to work. I returned to my job as a hairstylist. Things were looking up and it appeared as though I had gotten past the worst of what had happened. I was feeling good, I was back to work, a little tired, quickly fatigued and a massive headache, but overall I was ok and happy that I had come out of this all relatively unscathed. The worst was behind me, so I thought.
This is how my journey with Functional Movement Disorder, FMD began:
It was Saturday morning, January 27, 2018, I woke up at 7:45am, got out of bed and felt a pain in the back of my right calf. I walked downstairs to get a shower and get ready for work, when the pain suddenly worsened and moved slowly up the right side of my body, by the time I walked into the bathroom and looked in the mirror, I realized my lip was drooping, I walked into the living room and asked my boyfriend, Jayson of my face was drooped, he agreed and my speech began to slur and my entire right side became numb. It was at that moment we realized that I was showing symptoms of a stroke, so he called 911.
An ambulance arrived shortly after the call was made and off to the hospital I went. Shortly upon arriving at the hospital, I was being admitted for further testing. The next morning I was greeted by a neurologist, who explained that he saw something on the MRI that was not supposed to be there and that I needed to have a repeat MRI to see what, if anything else was happening. I had a second MRI first thing that Monday morning and the spot the neurologist saw was still there. I was diagnosed with a small stroke and a blood clotting disorder known as factor 5 Leiden mutation. Upon being discharged, I was told to follow up with him and my primary care doctor.
In the days that followed I had my follow up appointments and had developed a terrible headache, in fact the worst headache I had ever had, that absolutely no pain medication could touch. The pain was across my entire forehead, it went in a horseshoe shape from ear to ear, if you have ever bumped your forehead on the door of the car when getting in or hitting your head off a cabinet door that you accidentally left open, that was the pain I felt. The headache lasted for two months before finally letting up a bit and eventually, several months later, weakened off enough that I no longer had it.
Two weeks after my first stroke, I was told I could return to work. I returned to my job as a hairstylist. Things were looking up and it appeared as though I had gotten past the worst of what had happened. I was feeling good, I was back to work, a little tired, quickly fatigued and a massive headache, but overall I was ok and happy that I had come out of this all relatively unscathed. The worst was behind me, so I thought.
What you should know about FMD
My current diagnosis of Functional Movement Disorder (FMD), seems to be promising in the respect that it is something that top Neurologists are talking notice of.
What I have learned so far is that there are hundreds of others throughout the world that also have FMD or Functional Neurological Disorder (FND). For now, both diagnosis are paired; meaning they are currently being treated differently, but under a similar classification. There is still a lot to be learned about both, FMD and FND.
There seems to be no time limit on it, as in it doesn’t seem to go away, it just gets progressively worse over time. Symptoms are slow in onset at the beginning, then come on strong within months. Symptoms also come and go on a day to day basis, with no time frame or warning. If you have either of these diagnosis, you are at the hands of the illness and what “it” wants to do. Both illnesses seem to be dormant in the body, then rear their ugly effects after a trauma of some sort.
I am in part of a support group and am in line for two clinical trials. I see so many others commenting and posting and our symptoms are all similar or exact same. All of us diagnosed have the same, or similar symptoms. What saddens me is that for some, it may seem “fake” as in “a cry for sympathy”, but I can assure you this is not.
Both FMD and FND are rare. Where does it come from? That is what we are working on. Is there a cure? Don’t know yet. How long will this last? Don’t know. Will it get worse? It seems to, but time will tell.
This illness is hard, mentally and physically. Mentally being that my life has been turned upside down, spun around, then turned again and again. Physically, I have good days and bad days. I do have less symptomatic days, but mostly I am symptomatic.
Some examples of symptoms that sometimes occur all at once but usually just several at a time: My legs get numb, the bottoms (arches) of my feet hurt terribly, I am nauseous, I can’t hold a cup with out two hands, tremors, shakes, headaches, short term memory loss, extreme fatigue, pulling of muscles as if you are being pulled in both directions, back pain, blurred vision, dizzy spells, speech issues as in slurred and stuttering, inability to use fine motor skills.... And I could probably go on by why? By now, you get it. I am never ok. I am in pain every day.
I am trying to have as normal of a life as possible. Just because you may think I should stay home or whatever, means nothing. When I do go out, I am not looking for sympathy, just understanding and by all means, roll with this as I have. If I am having a good day, celebrate with me, if I am having a bad day, go with it with me and celebrate that I am alive. I am not going to stay hold up in my home nor am I just going to lay down a die. I would rather see you out and I am somewhat ok or good, but if you see me using my cane, see me on an electric scooter or in a wheelchair, DON’T JUDGE ME as I have no control in my day to day life anymore.
I want to make it clear that I cannot work a regular job. Because of my excessive list of symptoms and how they come and go, I cannot think of any job I can do at this time. I cannot call off work 2-3 times a week if I were to get a job.
People NEED to be aware that this is in fact real and it could happen to you.
If you read this the entire way through, I thank you for caring or being interested enough to do so.
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