It hasn’t been that long since my last post, but a lot has happened around here. I am so grateful for all of our family — there’s nothing like knowing someone is always there to have your back when life gets crazy…
The Philosopher ended up having to have surgery – and by the time we knew it was an absolute must, it was basically an emergency situation pain-wise. He ended up suddenly almost completely debilitated. Thankfully, by some miracle, my Mister was able to get him an appointment with the neurosurgeon within days, and ten days after that he was scheduled for the surgery to de-tether his spinal cord.
It was one of those situations every mom knows. You’re scared, but you can’t actually let on that you’re scared… I know every mom who has dealt with a scary health situation in their child – where you have to really trust someone else with their wellbeing – every one of you who have experienced that knows what I’m talking about. Since I have some emotional issues related to poor care at hospitals (okay, it’s probably a bit of PTSD since it leads to physical symptoms but we won’t talk about that right now), the whole hospital/surgery thing had me really freaked out — physically sick. Thank goodness my hubby was able to get off of work… He has had many positive hospital experiences and was completely comfortable with the entire situation — just the rock that I needed.
The surgery was a complete success. In fact, the neurosurgeon came out totally thrilled because the Philosopher’s tethered spinal cord was one of the worst she’s ever seen — which meant that releasing it is going to have a HUGE impact on his life. We’re already seeing changes that were beyond anything we imagined. Not only is he walking more easily, his brain is actually functioning light-years better since it’s not being pulled on constantly anymore. His overall body pain levels are lower than they’ve ever been, he’s dreaming, and he’s no longer struggling with depression issues. It’s like a miracle — and it hasn’t even been two weeks since the surgery. Things are just going to improve from here!
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While the Philosopher has been healing I ended up seeing a new neurologist – just to establish care with all my weird issues since I hadn’t seen one in years and I’m supposed to be under regular supervision. He had access to all my files over the last 11 years, but couldn’t really understand what the prior docs had been doing. After examining me and listening to me (actually listening mind you!) he told me there was really no reason to assume that I had a seizure disorder. He had me go over the situation where my symptoms all began again, and I told him about “The Fall” down the stairs that started everything — I off-handedly said my symptoms after the fall were like, “I had a stroke”. He immediately said, “You did! Hold on a sec..” and then almost ran out of the room.
He had gone to look at my MRI imaging again… and he found what he was looking for…
I did have a stroke.
Clear back in 2005, when I fell down that huge flight of stairs, one of the arteries in my neck suffered a dissection. Apparently, the arteries and veins on my entire right side are very small and web-like (not just in my right arm) – so it doesn’t take much to block one, and a serious fall led to permanent damage. At 25 years old – just before my 26th birthday – I had a stroke… and I had been seriously misdiagnosed. In fact, it was strongly implied that my symptoms were not real – that I was somehow faking them — even though there is no way to fake that kind of facial droop.
The damage from a stroke can improve to a certain point, but there is always a permanent effect. When my body gets stressed by anything — whether that is physical, emotional, etc. — if anything fatigues it, the symptoms that occurred after the stroke return. The harder I worked to “get better” the worse things were. Which is why I began to “improve” when I started resting more and taking my symptoms seriously — even if the doctors weren’t. As long as I don’t push myself too hard — as long as I live within my limitations — I do okay.
By the end of every day my body is done, which is why my face is a bit droopy by then, and my arm and leg are a unique blend of weak/achy. Not fun. But after 11 years, it’s normal for me. The neurologist said he was actually really impressed at how well my body/brain recovered, and also informed me that dysautonomia is a common result of stroke — so that’s why my autonomic system problems began at the same time. My health is officially no longer a mystery. He’s going to have some more imaging done to see where things are now, but he was really shocked that no one found the obvious stroke in my imaging before now. He had the images from 2009 and saw it there… a smoking gun that explains everything.
I’ll admit — my feelings about this new info are a bit mixed. I’m relieved to be able to really understand my body, and I’ve found myself feeling more compassionate towards it — here it’s been doing the best it can, and I’ve been angry at it for not “trying hard enough”.
I’m also a bit scared, though. Having one stroke under my belt so young doesn’t bode well for my future — especially since I have such tiny arteries and veins on my right side as well as a connective tissue disorder of some sort… they are easy to block… and they’re the reason why I get terrible headaches when my blood pressure gets above 110 over something… those little vessels think it’s too high at that point — thank goodness for the low bp that comes with the dysautonomia. I just have to keep my bp in the sweet spot – 90 over something to 105 over something – low enough to keep away a “high bp headache” and high enough to keep me from passing out!
I will be dealing with the results of that stroke 11 years ago for the rest of my life — as the neurologist said, “This is just your life.” It’s not good or bad, it’s just the way reality is… I’m learning that the “stillness” – the rest – that I’ve been forced to embrace is not the result of some kind of failure on my part. It’s not some kind of mysterious occurrence that can’t be understood, or one that has to have some kind of spiritual meaning because otherwise it doesn’t make sense. This is the result of a real circumstance, and any meaning I can find in it – any spiritual growth – will be from how I live with it, not from someone else’s interpretation of it.
This too is Grace… and in it there is Peace.