Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Posts Tagged ‘Management’

Five For Friday 6/29/18

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • Back at it in PT. I spoke too soon last week. My ribs have decided to give me fits.
  • 2 Days of Home Rehab. AKA three miles in the neighborhood and strengthening exercises in my living room.
  • Weekly acupuncture and infusion. Sometimes managing my health seems like really hard work. This was on of those weeks.

Five For Friday 3/11/16

Written by Katie. Posted in Five For Friday

1. Medical Stuff: It was just one of those weeks when I felt like a lived at the doctor.

  • 1 Day of Home Rehab. Treadmill! Side walking and backwards walking too…
  • I saw Larry on Tuesday. He just makes going to the doctor a blast. We laughed so hard as he worked on my neck, head, and jaw. He’s good for the body AND mind. Those kind of doctors are gems.
  • I had my second infusion on Wednesday. I am learning. Get it in my non-dominant hand, and I can still work on the computer. I did feel much better after both bags of saline.
  • Brad and I traveled to Indiana Thursday night for a Friday morning appointment with a new doc; Dr. Klauer who specializes in TMJ and sleep disorders. Wellll, after four hours, a VERY extensive exam, and going over all of the results, we came up with a plan: 1) I need a sleep study to see if EDS is affecting my breathing when I sleep. 2) I have a severe deviated septum and bone spur and need surgery. (Sigh). 3) I am having a new splint made for my jaw pain that will take all of the pressure off the back of my teeth and mouth to allow my jaw muscles and ligaments to relax at night. Let me just say that they did an amazing job, and I really liked Dr. Klauer, but as many of you know, having chronic illnesses is NOT cheap.

Five For Friday 9/19/14

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • No PT this week. All rehab was on my own.
  • 3 days of Home Rehab. So the new treadmill was put together, and then wouldn’t work. After a lot of time on the phone, the company said it was defective and will be shipping another one…So it’s back outside for walking and cardio until the new one arrives.
  • I saw Dr. Rosen on Tuesday for a shrink appointment. Just trying to figure everything out…you know, life things…things like balance, perspective, health.

Prolotherapy Through My Eyes

Written by Katie. Posted in Ehlers-Danlos Appointments, Ehlers-Danlos Awareness, Medical Team, Prolotherapy

I started prolotherapy treatments in 2011.  I have lost count as to how many I’ve had. I have learned along the way that prolotherapy is controversial in the world of EDS. The first EDS doctor I saw after I was diagnosed actually did not recommend it, although he admitted he did not know much about it. At that time, I was having a horrible time keeping my back and head supported without a neck or back brace. That doctor actually diagnosed me with cranial instability and sent me on my way with a referral to a spine surgeon, telling me he suspected the surgeon would determine that I needed a skull to C-3 fusion.

Q & A: My Current Exercise Regimen

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Physical Therapy, POTS Awareness, Questions

I recently received an email from a Mom whose daughter has just been diagnosed with EDS and POTS.  She had questions about my exercise routine with POTS and EDS.  It made me think about how I have really neglected this blog the last few months.  I am honestly having trouble finding the time and the energy to keep everything updated, but I am going to try and do better.  I feel it’s important; especially for awareness and documentation sake.  When I think back to why I started this blog in the first place, one of the reasons was to document my journey for learning to live with EDS and POTS.  When I was really sick, I remember looking all over the Internet for blogs that did the same. I found such comfort in reading about other people’s stories that were so similar to mine. 

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