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!!!