Niki Naeve

Kirtan Music and Blog

Blog

  • Tethered Cord and the Great Untether

    The diagnosis of tethered cord was barely on my radar until I saw my current Physical Therapist, Dr. Caroline Creager.  An EDSer, herself,  Dr. Creager has done deep dives into whatever research is available regarding the more malevolent ghosts which ride with hEDS, in order to help herself and her kids. Honestly, at first I… Read more

  • Dearest Dad

    December 15, 2023 Dearest Dad, I’m afraid that, once again, you have mistaken me for someone with unlimited time, energy and inclination to believe they can do a better job at a formal investigation than the DOJ, federal officers in Delaware, and/or a pack of trained lawyers regarding a laptop.  Since this is your fifth… Read more

  • The Body Beat

    The Body Beat August 2023 Hello and happy summer, everybody! I know no one will read this whole thing, and that’s very much all right. Yes, I write these things to have my wounds kissed, but just as much to organize and crystallize information in my own head.  The medical stuff makes more emotional sense… Read more

  • Cocoon

    October 2022 So It Appears I Finally Have A Plan… Houston, it appears I finally have a plan. Sort of. This week I met with the generous vascular surgeon Kurtis Kim, (thanks to a grant from a grateful patient of his) and a bariatric surgeon from UCHealth, Dr. Akshay Chauhan. Between them (and more than… Read more

  • I May Have Covid-19, But We May Never Know…

    So, here’s my Covid-19 – related story today. Of course it probably wouldn’t have been Covid-19 related if it had happened a month ago.  But today I got to see what life is like for the amazing folks at Urgent Care and and an ER prepped to the nines for the oncoming wave. So February… Read more

  • One Dream

    State of the Niki, April 20, 2019 “When you’re healthy, you have a thousand dreams.  When you are sick, you have but one dream.”  – Unknown So this is the latest: I’m seeing a new Immunologist, Dr. Isaac Melamed, and a new Rheumatologist, Dr. Stuart Kassan. Dr. Melamed ordered a total of 46 tubes of blood… Read more