I honestly haven't got an answer other than I haven't fulfilled God's purpose for me on this earth yet. I play the devil's advocate game to help me understand and see the whole picture. Others make lists of pros and cons.I have been luckier than most. The multiple strokes have hit in redundant functioning areas of my brain and just reset set my recovery. Meaning a new stroke attacks a part of my brain that has a backup already in place, or I am just recovering functions over and over again that I'd recovered. I'm in a constant battle in relearning and rerouting/reawakening neural pathways. Yes, this is very frustrating! At times it's so frustrating I pray for death. I'm tiring of the relearning process.There. I've said it, but I'm still here so I keep fighting.
First, baclofen pump update. Now, I'm four weeks into a fully functioning pump. I noticed a weakening on my functioning side. I'm constantly listing to the left side (functioning) and having to correct my posture. I'm not able to lift as much weight with my functioning arm. I'm having difficulty rising from a prone or seated position. This may be because I had gotten used to functioning against the spasticity, or maybe the oral baclofen I'm still taking at maximum dose is too much, or it could be that the cervical placement is just affecting both sides equally. The last was a side effect of the pump discussed in my preop as possible side effects.
I quick called to my baclofen pump doctor have them reduce my oral baclofen by 20 mg to see if it helps. After a week, most has subsided with the decrease. So, I've got an appointment to raise my pump dose to get me off the oral baclofen. Conversely, or on the positive side, I can now manually move my wrist 10 degrees. The elbow flexion is still being stubborn. My constant pain levels have dropped to a 0-2!
Sunday before last, I published my frustration at showing so little progress I've had after my baclofen pump surgery. In that post I mentioned the pros and cons in being three weeks post op and two weeks having the standard, initial dose of baclofen.That prompted a response from Rebecca Dutton, a fellow strokee. I've been in awe and full of respect of this writer for almost seven years since my first stroke. She was the first stroke blogger I read and conversed with regularly. Her expertise as an OT aside, she'd survived two brain stem strokes.
As an OT I had no idea how much problem solving a stroke requires until the day we die.
In response, I wrote back...
As most stroke survivors, I almost wished my strokes had kill me. As someone who watched her grandmother fight her way through six strokes take away bits and pieces by reoccurring strokes until a massive 7th stroke finally took her home,I'm well aware of the ongoing fight. It must be where I get my fighting spirit comes from. I still fighting after my 6th and trying to live each day the best I can.I often quote Nietzsche, "That which doesn't kill us makes us stronger." Or my prayer before surgery or after any perceived life changing event, "Lord if I don't awaken from this, I'll happily be with You. If I awaken, I'll know my job on this earth isn't finished yet." My life functions on faith.
Still as Rebecca says, any recovery is a constant battle. You would think that once the brain reroutes neurons to make a movement possible that after some repetitions it becomes recovered, but that's not the case. This is why stroke recovery is so frustrating.
When you break a bone, it heals and you go on with your life. This is not the case with the brain. It's a life long fight to hold onto recovery. You fight holding onto that recovery until you draw your last breath. You will battle every day between being able to do and not being able to do. But you fight everyday for something, don't you? That's called living, right? Everyone has their burdens to bear and this is ours.Geez Jo, you are being a real bummer today, ain't ya? Yes and no, I'm just telling y'all what it's like living post stroke. But it's not all bad. Every morning you awaken to new possibilities. Bumble bees buzzing around you doing their daily tasks. Birds fly and sometimes settle near singing their songs. Flowers give you their fragrances and blooms for your enjoyment. Life goes on. So when questioning your survival after your stroke, look a closer look around you. What a gift you've been given for just a new day. So I'm not wishing for death today. Today, I'm living life to the ultimate.
Nothing is impossible.
I do not know what kind of long-term recovery I would have had if I had not read about the success and troubles of other stroke survivors.
ReplyDeleteI know exactly what you mean Rebecca. I miss hearing John.
DeleteAwesome the pain level is so low.
ReplyDeleteGod still has a need for you here, so you just have to keep fighting.
Thanks Alex
Delete