If you know me you know I can’t have blog/site without music being part of it. This Tony Joe White song is my current manta.
Being impacted from a Stroke happens suddenly and it happens over time. I am 3 months post stroke and still being impacted in new ways, all while learning how to navigate life on my Brain Injury’s terms.
Once the event happened and the blood clot went to my brain (left side) I had immediate deficits on my right side. I was incredibly fortunate in that I had just coordination and compromised muscle tone problems in my dominant right hand,(fingers mainly) and my right leg (knee down to foot). I could still walk but needed the aid of a Walker due to my balance being comprised.
After 18 days in the hospital, 12 of those days in intensive rehabilitation, when I came home I was getting around my little apartment pretty well with the Walker and I was able to flex my fingers open about 70% of the time. I started cooking most meals for myself and trying to rebuild some structure to my new life. Unable to work I had hours I needed to fill.
It was more challenging being home than I expected it to be.
Everything takes more exhausting effort, getting dressed and making breakfast first thing in the morning. Then I need a nap. Another Learning curve: Neuro Fatigue is like no other fatigue. Rest does not leave the Survivor feeling rested no matter how much sleep. It takes enormous amounts of energy for a brain to heal, and it takes time. I soon learned that I’m not able to”just get over it.”
This has been the toughest of impacts. While in the hospital I was doing great, even said to the Rehab Psychologist that my obnoxiously happy nature was serving me well post stroke, I was rocking it. But..alas… once home and past the thrill of being on my own in my own home again the emotional turmoil struck me.
First came the anxiety, it didn’t just creep up on me, it hit me full force like a storm, a full on panic attack one evening while simply eating dinner.
It was just me and a close friend, a simple dinner in front of a movie. One moment I was eating, talking and the next I thought I was having another stroke. Let me add here that when I did have the stroke I was asleep, I don’t know what it feels like to have a stroke, only what the results are. The symptoms from the panic attack were so intense and so frightened me that I called the emergency 911. In the next 5 minutes while waiting for the paramedics I experienced rapid heartbeat, my entire body was tingling and going numb, I couldn’t catch my breath and I was shaking so bad I couldn’t stand up.
The paramedics arrived and immediately established my blood pressure, heart rate and oxygen saturation while also performing a stroke assessment. I was not having another stroke…. it was anxiety. One of the paramedics pointed out that when I used deep breathing tests that I was bringing my blood pressure down 20 points. I’d had no prior experience with anxiety but I believed him.
In weeks to come I began having more anxiety symptoms, although more subtle. My injured brain was remaining in a hyper alert fight or flight mode, every day noises like my phone ringing would startle me so badly I’d literally jump. My brain is having to relearn to filter out alarming sounds that are not alarms. It helped to know this is what it is, but I am still unable to reason with my brain when panic strikes.
Since I have been diagnosed with being on the Post Traumatic Stress Disorder spectrum from a life threatening medical event. I was prescribed an anti-depressant to treat the anxiety, but after several weeks I wasn’t feeling any benefit for the anxiety and more significant was ironically I was getting depressed, which was exacerbating the anxiety. I began to realize that I was isolating, even experiencing social anxiety and agoraphobia, my small world was shrinking even smaller. Just last week I connected the dots to the medication and tapered off it, by the fourth day without the medication I felt 95% better. The anxiety is improving as well. I’d had no prior experience with anxiety and in hindsight found the depression was paralyzing. I’m grateful for the first hand awareness about anxiety and depression,
I didn’t know.
Now I know
Being impacted by Learning Curves.
Life as you know it can change in the blink of an eye.
On October 25 2018 I didn’t give it a second thought when about 10am I felt the need for a nap, I’d been up all night writing. It wasn’t unusual.
When I woke about an hour later by a full bladder I first thought I must have slept on my right hand, it was like it was asleep, tingling, and I could not open my fingers or use it. By the time I made it to my living room I knew something was very wrong, my right foot was now affected. My best friend is a retired R.N. and I phoned her to come over, I knew as soon as I spoke out loud that my speech was affected too, I sounded drunk. Although my R.N. friend knew I was having a stroke she didn’t alarm me, but she calmly advised we needed to go to the emergency room asap, thankfully it is 3 minutes from my home. It would have taken longer for the paramedics to get to me.
The emergency room department was brilliant and swift; within 20 minutes I had both MRI and CT scans of my injured brain verifying I’d had a stroke, a blood clot went to my brain. I was given the treatment of Alteplase IV r-tPA through an IV in the arm, Also known as tPA, it works by dissolving the blood clot and improving blood flow to the part of the brain being deprived of blood flow. Alteplase IV r-tPA needs to be used within three hours of having a stroke or up to 4.5 hours in certain eligible patients. I was within the time frame easily and am convinced this treatment mitigated my brain damage. I will forever be grateful to the E.R. staff and my bestie for saving my life.
I’d had an Ischemic Stroke, left side, which resulted in right side impairments.
Time is of the essence.
After seven days in a medical floor waiting for my insurance company to approve inpatient rehab in the hospital vs rehab in a skilled nursing facility I was finally moved to the Rehab Unit. I had been receiving Physical, Occupational and Speech therapy on the medical floor, just not as intense as would be in the rehab unit.
Now the fun begins. Three hours of divided therapies a day, six days a week.
I’d like to mention that the providers at St Charles Medical Center of Bend Oregon USA are by far the most professional, compassionate and kind staff any city is blessed to have. My experiences were nothing but positive and empowering. There is no dignity being in the hospital, especially when your mobility is compromised, yet the staff never lost sight of how important respect is. I’ve too many favorite doctors, nurses and therapists to name, but my rehab Doctor, Dr Eggert, my rehab Nurse Andrea and Meg my physical therapist indeed deserve shoutouts.
After 12 days (18 total hospital stay) of rehab, three different therapy disciplines the program readied me to go home with some confidence.
However that confidence was short lived once home. Learning just how much effort and emotional toll it took in trying to navigate life without the support of the hospital staff and structure blew my mind. I was fortunate that a close friend stayed with me the first two weeks home, I am not sure I could have even cooked for myself. Going to the bathroom, dressing, and having breakfast did me in, I began my day with a energy deficit.
I quickly learned about another deficit resulting from a stroke, Neuro Fatigue. Almost 3 months post stroke and I am still coping with being so tired that I nap several times a day.
I am still using a walker, my balance is iffy. I can now open the fingers on my hand, and am even typing now, I could not extend my fingers open at first, being right hand dominant I had to adjust fast to using my left hand while still attempting to use my right. I found it fascinating that when I intuitively tried to use my right hand without thinking about it more than often I could manage, when I put thought into it I could not.
Recovery according to my medical team will take 18 to 24 months, everything is a learning curve.
In the following future entries I will be touching on those learning curves, everything from ongoing physical and occupational therapy, Neuroplasticity, Anxiety, PSTD and Depression, inability to work, bills, inability to drive and having to depend on others, just to name a few topics.
My agenda is awareness for understanding, awareness for education, and more personally to use this format as a cathartic process for myself.
I am grateful for your interest and your time.
We all tend to think we are invincible, until a blink of an eye.
Thanks for joining me as I share all the learning curves to recovering from a stroke.
Good company in a journey makes the way seem shorter. — Izaak Walton