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Many changes

Wednesday, October 09, 2019

My last blog was 255 days. I guess that is the last time I was tracking my calories. Whoops. But a lot has changed since then. In my last blog I was diagnosed with POTS and assumed it was a chronic life long condition. I was coming to terms with it but there was no hope for the future. In July of 2019, I had to see a new neurologist after my specialist moved. His analysis was I didnt have POTS at all. I should have been excited but it put me back at ground zero with no diagnosis which is a scary place to be. He did have a theory and he was going to test for it. Honestly I didnt really think it was going to come to anything. So many theories have been proposed in the past and nothing came of them. So I didnt have much hope. We did the test and waited for the results. When the phone call came. I braced myself for the everything is normal response. But it didnt come. The doctor had found a spontaneous csf leak in my lumbar spine. The research began. I learned a leak happens in the dura and causes the brain to sag causing a variety of symptoms. The best thing is that it is curable. A simple procedure called an epidural blood patch can use your own blood to seal off the leak. Last week I had this procedure and so far so good. Not getting my hope up to high. It is a little tricky to patch and seal a spontaneous leak. For the next 5 weeks I cant lift more than 5 lbs. Really hard with a 3 yr old and 1 yr old but trying. But even if it fails we just try again. There's a plan. So much better than 255 days ago. Life is a journey and all we can do is take it one step at a time. It is exciting to see a future that i can drive again be upright without the risk of passing out and be headache free. In this process I have developed rhuematoid arthritis which was a bit of a downer but right now it is managed and I am relatively pain free. Not really expecting anyone to read this. Just doing this for me. It's good to reflect every now and then. I laughed when I looked at the title of my blog: salty life. Salt was actually a treatment for leak. No wonder people had thought POTS in the beginning. Salt was the only treatment that seemed to help. Now post patch I have to cut back on salt. But salt brings flavor and my life is full of flavor. I have two beautiful girls that I get to watch learn and grow. I'm blessed. So while right my diet is salt less, it is definitely flavorful. #journeycontinues #saltylife
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Member Comments About This Blog Post
    I'm so happy for you that you have a more hopeful diagnosis! Best wishes!
    177 days ago
    Thank you for sharing. Your story is a testimony and a blessing for others to hear, learn and heal as well. Healing and blessing to you.
    177 days ago
    I read it all the way through and learned a lot. I am glad that you've found a diagnosis. It can be really stressful not knowing what is causing your illness. You're on the road to discovery and recovery. Continue to heal and take care of those beautiful little girls.
    177 days ago
    I’m happy that you have a diagnosis and that you found someone willing to look closely enough to find it. That’s huge. And, yes, your life is salty enough! What a precious family - those adorable girls!!
    177 days ago
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