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

Five For Friday 3/1/19

Written by Katie. Posted in Five For Friday

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March! Made it to March! Woot! Woot!

1. Medical Stuff:

  • Tuesday PT. First couple of ribs sucked. My PT did her best to work her magic. I’m still struggling with my lower back. It’s loose, yet locks up. That’s EDS for ya. Need prolotherapy stat.
  • Had to reschedule my 6 week Postpartum visit for Monday. It’s coming fast!
  • Snuck a few sets of strengthening in when Lucia slept this week. Definitely not enough, but it’s better than last week. Working on it. See below…

2. Rare Disease Day was Thursday. Here is the latest on my stripes:

I have Ehlers-Danlos Syndrome, POTS, and Gastroparesis. I was in a wheelchair and on disability for one year in 2010. It took a lot of doctors, treatments, rehab, and trial and error to get off of disability, go back to teaching, and get out of that wheelchair. I did it, and realized my health had to become an everyday job in order to function. Therefore, doctors allowed me to teach in the mornings, with the understanding that my health was my focus in the afternoons (doctor appts, rest, injections, physical therapy, home rehab, infusions, and manual medicine).

I had a baby six weeks ago, and am a first time Mama. I’m currently on parental leave from my job as a K-1 teacher to be home with my daughter. I’ve tried to also be on “leave” from my second job; my health, as I figure out this whole new, incredible, (and exhausting) Mama world.

The last couple of weeks have shown me that this is not working so well. I am starting to have symptoms again. My pain is increasing. My heart rate is increasing. At times, the way I lift my sweet baby causes my ribs to sublux. I had to have a heart to heart the other day with a doc of mine about having to get my health in check again so I can be the best Mom I can be and stay out of my wheelchair.

So, how? It’s proving to be really, really hard. Most days, I’m not able to get a 5 minute shower until Brad gets home, let alone do rehab exercises or go to a four hour infusion. I’ve had quite a few meltdowns lately over this as I realize that ignoring my health while I care for Lucia is not going to work. I’m starting to have to think more creatively and admit to myself that I can’t do it alone. It’s a work in progress, but I know that using my support system is a MUST. Resting when I can is a must. Squeezing in a set of squats while Lucia plays on the floor is a must. And showing myself some grace is a must. I have not figured out injections or infusions or consistent home rehab yet, but I’m working on finding this new normal each day. I don’t have a choice. I owe it to my family…my Lucia…and most of all, myself.

Stripes don’t go away with the birth of a child. They don’t go away while on leave from a job. Whether you can see them or not, my stripes are here to stay… and I’m working hard
on figuring out this new season of my life as I embrace, not fight, my stripes.

3. Speaking of not being able to do it by myself, my Mama has come over four days in a row so I can shower and lay down for a bit. My in-laws watch Lucia so I can go to PT. So grateful. I thought rest was important before. Now, it is seriously GOLD.

4. I’ve become THAT Mom.  So much baby on here. Sorry, not sorry…

5. How Lucia felt about turning six weeks…

Image may contain: one or more people, people sleeping, baby and closeup

Image may contain: one or more people, people sleeping, baby and closeup

Image may contain: 1 person, sleeping, baby and closeup

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