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

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 3/4/16

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 1 Day of PT. Cardio, scap exercises, and OMM on my jaw.
  • 1 Day of Home Rehab. Treadmill, light weights, floor strengthening.
  • I saw my dentist for a 6 month cleaning. No cavities!
  • I saw Dr. Grubb on Wednesday. It was a long day, but a valuable day. I just love that man as a doctor and a person. Basically, my management plan for POTS is remaining the same EXCEPT now I have a prescription to get hydration infusions every week to help increase my blood volume, and hopefully make me less symptomatic. You have no idea how excited I am about this! There have been so many times when I have known in my heart that I needed fluids to help my flares, but was sure if I walked in somewhere and asked for fluids, I would not be taken seriously. I am hopeful that these infusions will improve my functionality. So grateful.
  • Insomnia struggles. Have I mentioned that I hate insomnia struggles?

Five For Friday 2/26/16

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 1 Day of PT. I started more scap firing exercises, plus cardio, plus OMM!
  • 1 Day of Home Rehab. Treadmill at a high incline, light weights, light stretching.
  • I was supposed to go back to Mishawaka on Thursday to see the new doc I was referred to for head, neck, and jaw pain. Well, with the snow storm that hit us, that did not happen. I am now supposed to go March 11. Fingers crossed.
  • POTS insomnia has hit! Gah. It is one of the worst things in my opinion about POTS. I know enough now that it is a matter of riding it out…

Five For Friday 2/19/16

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • Last week was rough, rough, ROUGH. This week was much better with head, neck, and jaw pain. I still don’t feel totally “right” but I do feel like I am coming out of this bad pain spell…hopefully.
  • 1 Day of PT. Since  was in more pain than usual, we laid off some of the strengthening and I did electrical stim after my cardio instead.
  • 2 Days of Home Rehab.

Five For Friday 2/12/16

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • I’m not gonna sugar coat. This has been a rough week with neck, face, upper back, and jaw pain. I missed two days of school and went on an unplanned trip to Indiana to get prolotherapy injections. I have been on my heating pad more than I have not. I have puked from the pain. I have backed off from rehab to try and get things to calm down. I am working on not freaking out.
  • 1 Day of Home Rehab. No PT.
  • Prolotherapy on Monday. I messaged my doc on Sunday about my pain and was in his office Monday morning. After 60ish injections, I was on my way back to Michigan. I’m extremely grateful for docs who will make time for patients, and will do what they can to try and get to the bottom of the pain.
  • I saw Larry on Tuesday for OMM. I showed him the specific spot on my neck that has been giving me a lot of pain, including shooting pain into my left eye and lots of headaches. He is thinking it is occipital neuralgia, which is giving me ocular migraines. I did get some relief from him using gentle manipulation in that area. Ahhhh. Fun times…: )
  • I saw my shrink on Thursday. It was a much needed appointment, and I walked out of the office with a much better perspective. And a much better ability to breathe in and out.

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