What brain injury survivors want you to know

Here is a great article  that explains what it is like to deal with a brain injury. This article is directed at family members and loved ones but anyone can gain understanding and insight if they chose to. Thanks to Patti G. for passing it my way.
http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

I look forward to the day when this article is no longer relevant to me personally. That day has not come as of right now. This article details a number of the "issues" those of us with brain injuries face on a near daily basis. To use my mom's phasing..."I'm not complaining...I'm explaining." Really! I am completely grateful for where I'm at today and how far I've come, but the reality is I still have a number of things I would like to see improve.
I recently attended Easter festivities with a large portion of my family. It was one of the first "family functions" that I have attended post-stroke. I have been to a few other events, but none quite the same as Easter. It was difficult. I came home basically in tears and somewhat disappointed about how hard it was for me.  While I knew it might be challenging, I wasn't entirely prepared for how hard it turned out to be. When I get upset with myself for not doing as well as I wished...I come right back to where I started. It was a bad place. I have come so far, and I am doing really great no matter what.  I am so grateful for what I can do and for the things that I can do well. Turns out, large social functions are on the list of still needing improvement. I am always hoping that these situations will just get better in time. This article acts as a reminder to be more gentle and patient with myself as I slowly try to regain all that I lost. It is certainly hard for my family to understand what I am dealing with, as I didn't even expect it to be such a challenge.

Brain injury recovery video

Another great video on recovery. Alison Shapiro also wrote an inspirational recovery book, Healing into Possibility. Even at this point in my recovery (almost a year and a half), I am still hoping to see improvements. I just keep reminding myself that it's about belief, and will. This type of video reinforces how much control we have in making our brains change to work for us. Thanks to Patti G. for sending this my way. :)

Horray for Wes!! Inspirational recovery story.

Everything is possible. It's all about will, attitude and perseverance. Enjoy!!

Meeting Angioma Alliance members

A few weeks ago, I got the opportunity to meet up with some other Angioma Alliance members that also live in the Los Angeles area and Connie (ambassador and founder of AA) with her daughter Julia. It was an awesome and also humbling experience to meet others who's lives are affected by cavernous angiomas. Several of the people in attendance have "multiples"...which to me is like a whole different deal. Having more than one means you most likely can't just have one surgery and be done. Not that one brain surgery is any walk in the park, but having more than one surgery multiplies your risk of complications, deficits, recovery, and associated stress. Also, if you have multiples, you could develop more angiomas at any time, meaning greater risk of bleeding over time, and constant uncertainty. It could also mean that there is a genetic factor involved, resulting in a 50/50 chance of any of your kids inheriting the faulty gene that creates angiomas. Point is...to have one stinks...to have many really, really stinks!! So in the group of 15 or so...I felt lucky to have only had one angioma. It also keeps what we had to deal with it in perspective. I feel like I have no right to "complain" about how hard it was. Sure it was tough, sometimes it still is tough, but really...people with multiples have to deal with what I went through plus so much more. Meeting Connie and Julia was an honor, after all, they started Angioma Alliance and they are very involved in finding a cure. Make sure you and everyone you know with a cavernous angioma signs up for  the international patient registry...even if you already had surgery www.angioma.org/registry I have said it many times, but Angioma Alliance was a tremendous resource for me from diagnosis through today, and supporting this organization is near and dear to my heart. Connie and Julia are continuing their trip cross country so check the website if you would like to meetup. www.angioma.org/roadtrip The meeting was great and left me wanting to do more to raise awareness for this unrepresented illness/condition...whatever you call it. I have been brainstorming fundraising ideas...but unfortunately my brain doesn't work all that well and so far I have no ideas. 5ks are popular, but there are so many in my area for other causes already and I'm not even a runner...it just doesn't make a lot of sense to me. I like some of the ideas that other people have done...a wine auction, dinner event...but I have no idea where to get started...so the brainstorming continues. Everything takes longer when your brain doesn't work quite right. ;) If I can ever figure out how to upload the picture we took of everyone at the meeting, I will post it. (It is at the end of almost 3,000 photos on our camera and it will only load all of them.Safe to say I am not tech savey in ANY way.)Take away:
 1. If you have not signed up for the registry...do so now...a cure depends on it.
2.    If you are able to meet Connie and Julia...do so...it is an opportunity you don't want to miss.  

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!!   

Spreading awareness about cavernous angiomas

Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.
I am not a professional writer...I was a math and science lady prior to all my brain problems. Writing has never been my thing. I didn't start writing until I found a "cause" or rather my "cause" found me. I originally wanted to be a doctor but changed my mind many years ago. My degrees and work experience are in psychology and nursing. With that said, I have been writing this blog since just prior to my surgery. I originally started it to keep friends and loved ones informed...and as a much needed source for positive feedback and encouragement during my darkest days...but it has become something very different. It now is my voice for spreading awareness about cavernous angiomas and sometimes stroke recovery. While professional writers probably cringe while reading my blog...fragments/run-ons, grammatical errors, punctuation all wrong, as well as my casual writing style...my writing is anything but professional. Proper writing aside, what I am presenting is my side to the story. My experience with cavernous angiomas, brain surgery, stroke, and stroke recovery. As part of my continuing push to spread awareness, I sent my story to a few publications...hoping they would publish it and help to raise awareness. The first place I sent my story was to Stroke Connection. It's a magazine put out by the American Heart Association. I submitted my story 9 or 10 months ago and they called a few months ago letting me know they selected my story. I am never short on words and my story was extensively edited down to a mere 500 words. The published version varies dramatically from my submitted version, but non the less here it is! Stroke connection article
While my article was edited extensively, I still perceive it as a win for my cause and I hope it is only the start of great things to come. I would love to see the day when physicians actually know something about cavernous angiomas and treatment involves something less invasive than crainiotomy. I will continue my advocacy for this condition and my dear friends afflicted with it.
   

A new year and a new set back

As we rang in the new year...we were hopeful we were leaving all of my health problems in the past. I was hoping 2012 would be filled with continued recovery and good health. Turns out...2012 has brought a minor set back so far. I was not feeling well for several days since Christmas, but had hoped it was related to "over doing it" with entertaining family during the holidays. It became alarmingly clear that there was actually something more going on when I experienced extraordinary back pain that persisted for several days. The first day, I tried to ignore it. The third day that I had the pain, I went to the ER...hoping to resolve any possible problem in 2011. Following the ER visit, I initially improved  only to experience increasing pain over the next two days. When my doctor's office finally opened on Tuesday morning after being away for the long holiday weekend, I was there waiting for her. She examined me and took a complete history of my complaints after which she explained two options. Option A: Go to the hospital, be admitted to figure out what's wrong with me, and get me treated. Or option B: do lab work, abdominal CT scan, and change the antibiotic again (4th switch)...wait for the results and then be admitted if need be. I chose option B...hoping to stay out of the hospital. My lab work and ct scan did not indicate any specific reason for my pain, although while I was in the ER my urine contained bacteria and blood, leading them to the diagnosis of kidney infection. (I had a UTI about a month ago that must have not been entirely treated although most of the original symptoms resolved.)  Normally, one can just be treated with oral antibiotics and the problem resolves. For me, finding an antibiotic that works that also does not lower the seizure threshold was proving to be a challenge. I had been on 4 different antibiotics in the past week that didn't work. My doctor finally selected Levaquin to treat my infection and it is a 10 day course. After consulting with my seizure specialist...he put me back on Keppra. :( So here I am back in a fog, not able to drive while they adjust my Keppra so that my infection can be treated outside of the hospital. There were several other antibiotics that do not increase the possibility of seizures but they are only available in IV formulations. This is just another example of how having a brain problem complicates life.
The good news is that it seems this 5th antibiotic is working. My pain has been greatly reduced and is limited to my left lower back. Additionally, I am still seizure free on day 5 on the 10 day course with the Levaquin. :)
While I do feel this whole episode has been a set back in my recovery...I am hopeful it will resolve in the next few weeks and then I will be back on track. I was advised to stay on Keppra for the length of the Levaquin course and then I will be able to wean off slowly over the next week or so. Looking forward to being "Keppra free" again soon. This stuff makes me really groggy!! And happy New Year!!!