Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Thursday, February 14, 2013

2 Years

I missed my two year anniversary of my surgery/stroke on December 10th. That is a very good thing and is only possible because I am doing spectacular. I could have never imagined "forgetting" that date after only two years have passed since that very significant life changing event. I woke up from my surgery a complete mess, and not a day goes by that I do not feel eternally grateful for my current life and existence. I have spent the better part of the past two years working on my recovery. I still have a bunch of things that are "not right", but I know I am lucky. I worked crazy hard and I saw equally crazy good results. Even this past year, my recovery has slowed but I am greatly improved over last year. I'm going to list my current complaints as a point of reference for next year. These are the things that I am still working on:

Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??

Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.

Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.

Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.

That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.