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.