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.

Sunday, February 26, 2012

Still working on recovery

It has now been about a year and two months since I had surgery and my resulting stroke. I am always completely thankful and grateful for the recovery I have had/made, how far I have progressed, and for "what is" today! While I always am thankful and grateful, I remain hopeful that I will continue to move forward. The past two months have not exactly been encouraging as I have seemingly taken several steps back rather than forward. At this point, the dreaded plateau sounds almost welcoming. I finally feel as if I am beginning to almost hold steady again. I am anxiously awaiting the next steps in moving forward again...hopefully!! In November and early December, I was doing the best I've done yet. And then I was hit hard by a new set of issues. The whole UTI/kidney infection really zapped me and continues to deliver pain daily. It became abundantly clear that I am different now. I do best when I can just go through our predictable daily routine, without any extra taxing events. I am not prepared to deal with any additional health problems, so I hope I can just stay healthy forever! Our daily life, without any extras, currently consumes ALL of my limited energy.
As we move into the next phase of recovery, the chronic phase(after one year), I have started looking at some new options. I had been hoping/praying that my fatigue would just disappear...but it hasn't. I have tried several techniques to "manage" my fatigue with little to no success. Fatigue is my worst deficit at this point, and I am hoping to beat it. Currently, my fatigue is severe and very  limiting. I  had neuro-psych testing done back in November and they provided me with a number of recommendations. One of their suggestions was to at least try some meds. for fatigue. The biggest issue with that lies in my risk for seizures, so they said medications could be a difficult balancing act. I was encouraged by the hope of eliminating this fatigue, so I began my search for a new neurologist AGAIN. Lucky #7 or 8!!! So I have 2 new neuros to try next month, I hope one of them works out and I can get back to working on my recovery with the help and support of an expert. I also had a sleep study in November which looked pretty problematic to me...but I'm not the expert. ;) The neuro-psychs also said they thought that could be a big part of my fatigue, but I needed a "good" neuro to work with me since my current neuro didn't offer any insight to address my concerns.
This coming month is jam packed with several specialist appointments and I look forward to finding answers, initiating solutions, and finally feeling better!!