Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 - Thanks for the tears your story brought to my eyes. I'm glad you shared your story and "AWARD WINNING" movie with us. BillPS - I liked My Stroke of Insight as well and was excited to hear about how she retrained her brain, keeping the good stuff and throwing out what she didn't want. To: ACT_for_the_Public From: warriorprincessz@...Date: Fri, 26 Aug 2011 13:07:57 +0000Subject: intro a little about me: I'm the mother of a fantastic 11 year old girl and the partner of the love of my life, Steve. We live in a coastal fishing village in northern New South Wales, Australia. If you want, you can learn a bit more about my life by going to www.youtube.com and putting s Head For the Hills in the searchbar. It's an 8 minute 'award winning' film (I love putting 'award winning'! and it's true!) I've been working with an ACT therapist for a couple of years now. I combine it with swapping 'listening time' with two other people twice a week on the phone, which really helps. My biggest difficulty is with defusion but I'm getting there lately. I really enjoyed the book, My Stroke of Insight by Jill Bolte-, the neurosurgeon who had a stroke and recovered. She showed me that our right brain is where our connection to the universe resides (I'm sure it's not the only place, I've heard some people put their attention on the left side of their body) but for me the brain's the thing and I am putting up little pictures of brains around the house to remind me (mindfulness) and defuse me from left brain chatter. I carry the labels at the moment of ptsd and complex ptsd. About a year ago I went on the disability pension, which I found validated my current life experience as a result of my childhood experience. I don't plan to be on it forever but it's useful at the moment. that's all for now. Great to know you're all out there, or in here, or whatever Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 thank you Bill. At the website, www.mystrokeofinsight.com, I've noticed a forum where people are posting their own ways of accessing the right brain (mindfulness activities), which I've found useful to read through. cheers > > > - Thanks for the tears your story brought to my eyes. I'm glad you shared your story and " AWARD WINNING " movie with us. Bill > PS - I liked My Stroke of Insight as well and was excited to hear about how she retrained her brain, keeping the good stuff and throwing out what she didn't want. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Thank you Helena I've written about listening time in another post. I'm glad you tracked down the cd, it is one I've listened to over the years and find it good for my soul. The track I used, Return Again, really seemed to fit for the film. I also love the one that goes: How could anyone ever tell you you were anything less than beautiful how could anyone ever tell you you were less than whole how could anyone fail to notice that your loving is a miracle how deeply you're connected to my soul. Shaina Noll, off the Songs for the Inner Child cd. cheers ps I have always valued film making. The opportunity arose to make Head for the Hills in a free film making course and I took it. Many times I had to leave the classroom and go into the toilets and cry because the shame was riding high. I had a panic attack in the recording studio as I tried to read what I'd written but everyone was warm and kind and I literally had someone holding my hand. I want to make the point that it FELT ABSOLUTELY IMPOSSIBLE to make the film but I made lists and took a baby step every day, no matter how pointless or hopeless it felt and.....ta-da! I now have a film that is making positive change in other people's lives. > > > > , that is an awesome video; no wonder it won an award. You are brave to share your story so openly. I love the artistry that various people created using the same background template. I loved the music, too, and found the artist and CD on Amazon.com. It's the kind of music that would lift your spirits when you feel you are all alone in the world, or just to keep on as a soothing background while reading, etc. > >  > > Can you say a little more about swapping " listening time " and how that works? I'd love to be involved with something like that. > >  > > Thanks, > > Helena > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Hi  Krystle, welcome to the group! Subject: Intro To: tetheredspinalcord Date: Tuesday, October 25, 2011, 1:31 PM  Sent from my HTC Status™ on AT & T ----- Forwarded message ----- To: <LMC-TCS > Subject: [LMC-TCS] Intro Date: Mon, Oct 24, 2011 10:28 pm This intro has seemed daunting to write. I don't know where to being, and I feel like I never have enough time to just, write. Peyton will be two on November 7th. I had a partial placental abruption at about 22 weeks, and she had a stroke in utero. She was conceived with fertility drugs and from the beginning I had bleeding, late implantation, her heart rate was in the 80's multiple doctor's told me I would probably miscarry. I ended up making it to 39 weeks 5 days and went into labor on my own, where I had a natural delivery with no medication, they said I didn't have enough time for an epidural, and I had 40 stitches. Before she was 2 months we noticed she had some horrid head tilt, so we were sent to PT and her dx was torticollis. She was also not using the entire right side of her body or tracking to the right. Her right foot looked like a club foot but wasn't locked into place, just inverted. We eventually went to ortho for her foot (around 4 months) and scoliosis, he didnt want to do anything about either but sent us to neuro to rule out CP. CP wasn't ruled out, but rather diagnosed around 6 months and then again later on by a different doctor. It's mild, and she can walk. She always was pretty bad in the carseat and never slept well (she's still not a great sleeper). We moved to VA from WV and saw our new neuro just before her 1st birthday. She ordered an MRI to rule out tethered cord, we finally got it in January and she had a fibrolipoma, so they sent us to a neurosurgeon in N.VA. He was horrible. She had 4/5 symptoms straight up, of tethered cord. But he sent us on our way. I scheduled a 2nd opinion but ended up cancelling it because everyone kept saying she was OK. Finally, when her bladder problems (multipe UTI's) seemed to be getting worse, but her urinalysis were clear her urologist said to get a 2nd opinion on her lipoma. Insurance wouldn't cover another MRI, luckily she has SSI because of her CP so her medicaid picked it up. They did a prone/supine MRI and her cord didn't move. She had her surgery July 20th. She was given a 20% chance of retether, and everytime she tells me her legs hurt or I notice her falling (more than her normal) my brain runs 100 miles a second. It's. Scary. She had a uro-dynamic study late September and results were not great, they were pretty awful. I'm hoping to find some support on the bladder/bowel portion of what we are going to be going through. Our 2nd opinion dr. was wonderful and i'm so grateful for him, every.single.day. I do notice a big difference in her sleeping pattern before and after surgery, she doesn't kick her feet hardly at all, or complain too much about the car seat. Also pre-op she would be tired within 30 minutes to an hour upon waking, just dragging, now she seems to have more energy. She was delayed in speech and just now able to tell us when something hurts, etc. Here is a list of her dx, until I can figure out how to put them in my siggy. Thanks for letting me join you guys, I won't be going anywhere! DX from uro-dynamic study: Partial Neurogenic Bladder. (he said partial because we are repeating it from 6 months of the first to be sure of the dx before he calls it complete, she didnt' cooperate during the study). Early Bladder/Sphincter Discoordination & Incomplete Voiding/Poor Sphincter Relaxation. Other DX: Torticollis. VSD. Delayed Pyloric Opening. Reflux. Brachycephaly. Plagiocephaly. Prenatal Stroke. Mild Cerebral Palsy. Speech Delay. Urinary Retention. Sacral Lipoma. Scoliosis. PFO. Seizures. Rocking SMO's. Compound Hetereozygous MTHFR. Tethered Cord Release Surgery 7/20/11. By the way, My name is Krystle! Also, here is my blog (is that allowed?) http://justthetipblogg.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
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