Of Surgery, Stroke, and Stillness…

jp2hope

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!

 

*  *  *

 

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…

 

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.

Advertisements

Summer’s End…

porchshadow

It’s been a busy summer. We’re still in the process of going to specialist appointments for the Philosopher, and then things became even more complicated when the Professor hit his head over a month ago. He just stood up underneath the corner of a cabinet (proprioception is a common problem in autism), and initially we were told it was only a “mild” concussion. Unfortunately, he developed “Post Concussive Syndrome,” which means if he exerts himself at all he ends up with severe pain in his head and nausea, while he’s dealing with variable rates of head pain pretty much constantly. “Exertion” can mean anything from sitting up too long to just thinking too hard — something that is really hard for an autistic to avoid. His OCD has been a lot worse as well which, ironically enough, also leads to “exertion”. Needless to say, it has been a very difficult month, and we really have no way of knowing how much longer it will last – 3 to 6 months is common, and even longer than that is not unheard of… Our poor Professor is bored out of his mind, and I’ll admit I’m afraid he’s pushing his current boundaries too hard, which might be slowing down his healing process. I just can’t figure out how to keep an 18-year-old autistic young man “calm” for weeks on end!  He’s miserable! They think the reason that his brain isn’t healing “properly” is simply because his autistic brain isn’t handling the trauma like a neurotypical brain would… whatever the reason, it has made day to day life decidedly “unfun” for him. Even translating his thoughts from pictures into words has become much harder – so communication hasn’t been easy – and his memory which he’s used to having work perfectly, is unreliable. He repeats himself and loses thoughts in the middle of speaking them, which frustrates him. He misses playing music, programming, and learning languages… just to name a few things. Thanks to our genetic collagen disorder, all the laying down he’s having to do is causing him to have a lot of muscle and joint pain as well, on top of everything else. Please keep the Professor in prayer — this is just so hard.

On a happy note, the Philosopher worked so intensely in physical therapy that he’s managed to avoid surgery for now. :)  We have to monitor his tethered spinal cord and keep an eye on his symptoms… hopefully we can avoid the surgery indefinitely. We’ll see. For now he’s on a strict physical therapy regimen and we’re taking things one day at a time.  His pain levels aren’t great, and he’s struggling every once in awhile with depression a bit, but he’s hanging in there. The kid is definitely keeping himself busy! Not only is he staying on top of all his “lessons” – he’s begun a youtube channel, and keeping up with his friends from around the world. I’m proud of the way he’s managed to develop friendships with others, despite his autism and health limitations. Thanks to the internet the Philosopher is probably one of the most socially active autistic kids around. :)

I finished the web design class that I was initially so excited about. Thank goodness. I’m done with college for now. I just can’t force myself to do something that makes me miserable (no matter how much I want to like it), and costs sooooo much money!!! The financial hit is crazy, and while I might be able to excuse the money for the hope of a long term benefit, I just can’t force myself to do something that takes up so much time and bores me to death when it’s costing me so much. Even the classes that I really find interesting lose their appeal after the first 4 weeks or so. I need to be able to move on when I’ve finished learning a topic or I just end up miserable.

The reality is, I might be the only 4.0 student who hates “school,” but I do. I love to learn — but I hate the way “school” is set up as an institution. I hated it as a kid despite how “good” I was at it (which is why I loved finally being homeschooled), and I still hate it — there’s just no getting around it. I’m officially a sophomore now, but barring a miracle, I’m not wasting any more of my money on “college”. I’m going to focus on my birth doula and death doula studies, and enjoy my life. If there’s one thing my hospice work has taught me, it’s the reality of how brief our lives really are — I don’t want to waste my time here being miserable when it isn’t necessary. The ability to learn is a blessing that I want to take advantage of without the boundaries of  professors and boring assignments. Only school can make something like web design boring! It’s not the teacher’s fault either – it’s just the system – it’s set up with a power structure that drives me crazy. I’m done.

One of the big pluses of being able to focus on my doula work now is that I’ll be done with my birth doula studies by the time my new nephew’s birth comes around. I’m already feeling much more prepared to offer practical support to my sister than I felt at her last birth, and I didn’t do too shabby of a job then! :) I’m actually really impressed with how well this particular program has been put together. It’s the first birth doula certification I’ve found that emphasizes the influence of every aspect of a woman’s life on her birth — including her spiritual life. When I began, I was hopeful that it would be what I was looking for, but it has surpassed my expectations — and being able to go at my own pace, despite what life throws at me, has been really helpful lately.

There is the possibility that we will have more going on this Fall as well, but it’s a bit “up-in-the-air” – we’ll see what the next few months bring. Life is definitely an adventure around here, and I’m learning not to take any of it for granted. So much drives me to my knees…

but that’s Grace too.

It’s all Grace…

 

 

Life Goes On…

IMG_20160330_141008830       It’s been quite awhile since my last post – despite my best intentions I just haven’t had time to sit down and chronicle my thoughts and experiences. Life is busy – but blessed. Our little family  has moved to a home in one of the little villages near Mt. Hood, which is as beautiful as you’d imagine. (There’s quite a bit more traffic up here than I was expecting though!) There are still plenty of boxes that need to be unpacked, but I’m hoping to have more time for this little corner of the internet now that we’re settling into our new place.

There’s a lot going on in life right now. I’m still heavily involved in hospice volunteer and NODA work, and I’ve also begun a birthing doula program (the skills for birth and death doulas are very similar and I’m really enjoying adding this other “dimension” of “being present” [with women specifically] to my skillset). I’ve dropped my course load down to half-time for my BA in Religion so that I have time for everything that I want to be doing right now. I absolutely love my world religion and philosophy classes (the information is very useful in my “work”), but I’m not keen on the classes that I don’t feel connected to — especially when I know how much money they’re costing me!! Yes, I have a 4.0 GPA right now, but it means very little to me when I think about the financial hit this degree is giving me. I try not to think about the fact that in order to be a Catholic Chaplain I’ll need a Master’s degree — which is even more money! (But at least I’ll find all the classes in an MA applicable to my life and interesting.)  I am looking forward to my next class though — web design!! It’s been about a decade since I took a web design class, and I know things have changed a lot — it’s going to be fun. :)

Truthfully, I toy with the idea of just getting my birth and death doula credentials, making myself available for whatever donation people feel they can afford, and not worrying about the chaplain idea. I get to spend a lot more “hands on” time with people as a doula than I would as a chaplain. Hospice chaplains end up with heavy patient loads that seriously limit how much time they can actually spend with each patient, which means less time for making the heart-connections that I love so much. As a hospice volunteer I get to spend as much time with patients as I want — really I’m only limited by my own family and life schedule. I love this work, and I understand my initial pull toward chaplain work, but I’m in no hurry to spend the crazy amounts of money that the degrees will cost me. I’m already 37 — and we’ll be paying off my husband’s student loans for years… adding mine to the mix, and then whatever loans the boys end up needing… the financial implications are insane. (Why the heck can’t our education system be like the rest of the developed world! Ugh!)

*************

Speaking of my amazing boys. :) We’ve finally managed to get useable insurance – we qualified for state insurance for the next year – so we’re trying to catch up on health concerns that we haven’t been able to afford dealing with until now. I’ll admit to having some trauma and a bit of ptsd when it comes to seeing doctors myself – which apparently makes me a bit unstable even when my kids are the ones being checked out. I just feel like I’m on trial the entire time, my heart races, I’m nauseated… it’s awful. Thankfully, the boys haven’t had the negative experiences I have, so they handle the presence of doctors fine.

In all the recent flurry of evaluations we’ve discovered that the Philosopher has a tethered spinal cord, as well as some other things going on, so we’re in the process of tests, imaging, and the like to see if surgery is going to be necessary or not. In the meantime, he’s in physical therapy with a special therapist to help limit the degeneration that’s been happening. Thankfully it’s been helping, so while he still needs a cane, he’s now able to sit up for a longer period of time. In the next few weeks he’ll be seeing a geneticist, neurologist, cardiologist, and rheumatologist. It’s going to be a whirlwind of tests, but we’re hoping for some good answers.

The Professor had his first doctor visit in many years this past week and did a great job. He has a really hard time with touch, but the doc was very understanding and I think she’s going to be a good fit for all of us — hopefully for a long time. (Of course, so much depends on how long we have insurance!) He handled the bloodwork like a champ (I think the urine test was more disturbing) :), and we’re hoping to get answers to his blood sugar issues soon. We’ll brainstorm with the doc more at his follow-up appointment in a couple weeks. Struggling with digestive issues of all kinds has been such a normal part of his life, I don’t know what it would be like to get to the bottom of it all. With our weird genetics I don’t know if there will be a solid answer though! :)

Okay, so I managed to get through a primary care provider visit for myself  yesterday. She was really understanding with my crazy physical response just to being in the room with her. :) We did an EKG to get a baseline and lined up a variety of specialists to try to get on top of my healthcare. Without usable health insurance, I haven’t been able to be responsible about any of my ongoing issues – things like echocardiograms to keep an eye on my prolapsed mitral valve and EEGs to stay on top of my weird seizures – and I was feeling really embarrassed about it. Thank goodness the doc was understanding and didn’t make me feel any worse, she just got down to business and started lining up specialists to send me to —  an echo, cardiologist, neurologist, gynecologist and I think rheumatologist — or maybe we decided to do that last one later. Anyway, our family schedule is going to be really busy for awhile as we get all these specialist visits done. I’m tired just thinking about it all… I’d much rather stay home and ignore the issues, but that’s irresponsible when I actually have the ability to do something about them!

So, life goes on… Hopefully I’ll be by here every once in awhile to try to catch some of the moments as they fly by and store them here. Every time I turn around things are changing… and yet so much stays the same.

…It’s all Grace.