Day by Day
Step by Step
The day I had my stroke was March 21, 2013. I was 48 and brought into the ER by ambulance because of vomiting and a “strange feeling”. We all have a stroke story, and they are all devastating. I want to tell you a different stroke story.
I believe the story of my stroke is all that happened to me before, years before my stroke. To me and I hope for you my post-stroke story is what is important.
My pre-stroke story led me to my post-stroke life. All the roadblocks I encountered on my journey to my stroke, I believe helped me to my survival.
Two months prior to my wedding my grandmother died. One day before my wedding my cousin was killed.
I became pregnant seven months after my wedding and my son was born three months prior to his due date. I had pre-eclampsia and was on bed rest for seven weeks on my left side. I was allowed to be off my side for only one hour of 24. I was then hospitalized for about four of those weeks prior to his birth. When he was born via emergency C-section he was two pounds 10 ounces and with lungs that were only large enough to make him viable. It was 33 days before he was well enough to come home at little more than three pounds.
Shortly after I was diagnosed with lupus. Then I was told it wasn’t lupus. Then it was, then it wasn’t -- you get the picture. It went on for years. I was diagnosed with so many autoimmune diseases. The first one was the pre-eclampsia. I had so many unusual diagnoses in the years leading up to my stroke, I learned that I had to trust my body and fight for every appointment and continue fighting til I received something we could work with and fix. My retina detached in 2010 and they couldn’t reattach it. They had no explanation. I had several surgeries including being positioned face down 23 hours and 45 minutes per day for ten days. I lost the sight in my left eye.
I even went into the ER with classic stroke symptoms three times prior with speech, balance and gait issues. Each time explained away by my meds, or because I had the three F’s - fat, forties & female. We get written off during our forties and fifties - due to menopause, hormones and stress. Beginning three weeks before I had double vision and headaches and continued to fight for reasons for it because while I’ve had both prior, this was different.
So when I began vomiting on March 20, the day after my 19th wedding anniversary, I asked my husband to call the ambulance and then many things fell into place. I was brought right into a room, they gave me anti-nausea meds, and then some to sleep to break the cycle. It was during my short nap that I woke and told my “complacent”, easy-going husband that I couldn’t swallow he got the doctor and then things happened like in a movie. My parents arrived and the doctor said I had a stroke and was having one right then. They advised us of all the options including the TPA. “Only one percent have an adverse reaction to the TPA”. We had literally 7 minutes to decide. We had a quick forum and decided let’s get busy, we know I’m in the one percent, so let’s get it going so we can come out on the other side and fix this. ER called a “stroke alert’, I received my stroke team and was given the TPA. And as we thought it blew my arteries. I had a dissection of both vertebral arteries in my brainstem. The absolute worse place to have a stroke. They went in right away to open the arteries. One was already healing and the other required a stent, they also found several healing and healed strokes. The vascular surgeon informed us that I had a connective tissue disease, which resembles the lupus, but is not found in the standard ANA lupus blood tests. He said at my follow up six months later, that while the inside of me was ugly, no one could see that from the outside! He told me to go out and live my life.
The stroke caused me to lose my swallow - I had a PEG tube; my breathing system and speech - I had a trach. I had to learn to walk and use my arms. I had a long road ahead of me. But so many times while in the different departments of the hospital from SICU, to medical, to ICU, to neuro and then rehab, doctors, nurses, assistants, interns, etc. would stop in my room. I continued to be the enigma. People don’t survive brainstem artery dissections - 3% only. And when they do, they don’t look like me. I was sitting with my legs crossed. I was writing since I couldn’t speak. And they all told me they had to see for themselves and would tell me it was my attitude. I think it was naievety. I had no idea how I was supposed to be, what I was supposed to be doing, or not doing. So I was always encouraged to try. I never had a walker or cane. I had a trach and vent but both were removed fairly early on. I was told it could be years or never to speak or eat again. I spoke within days of having the trach removed. It was four months before eating. I walk miles now.
There are good days and many bad days but my motto in the hospital was “day by day, step by step”. We still use that motto. All of my support team.
I believe surviving and coping with all the previous issues gave me the “building blocks” to survive and thrive since my stroke. Odds are because of the connective tissue disease and vasculitis there will be another stroke. Moving on from the brain injury of stroke has been the most difficult. Physical inabilities I’ve been able to rewire and adapt, get around and work with. Mental and emotional issues have been a challenge. I’m still in the grieving process, there’s still the fear, the sadness, and the losses. Ultimately the acceptance is still a huge part of my journey. My body failed me but my mind defies me. I believe I will be dealing with the grieving process for a very long time and even once I get to the acceptance stage that will be a lifelong stage.
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