My Life With Dysautonomia

While I don't have the typically known dysautonomia, this is an accurate description of what my body experiences. 

When I’m pregnant, I am at my absolute healthiest. Pregnancy hormones result in an increased blood volume, which tricks my brain—and my body loves it. My digestive system slows and I also absorb more water from my diet. I love being pregnant!

In a normal year, I get infusions of saline two or three times a week to increase my blood volume and an anti-nausea med to help with my vomiting situation. While the infusions help me so much, the day I receive them is a bit bumpy. Because the fluid is room temperature, it’s 30 or 40 degrees below my body temperature which makes me so, so cold—in turn making my muscles sore and causing a headache. And when my blood volume is increased within three hours, I feel heart palpitations as my heart works harder to pump. It’s not a problem, but it’s uncomfortable. I usually spend that evening wearing two sweaters, curled up under my blankets in bed feeling crummy and tired. 

Why can't I just drink more water?

I don't have my large intestine. Because of that, I no longer have the organ that is responsible for absorbing water from my food and such. So even if I were to drink two or three liters of water a day, my body doesn’t have the ability to absorb it into my bloodstream. Add that to gastroparesis (partially paralyzed digestive system) and its a double whammy: 

dysautonomia AND the lost ability to absorb water.

So, instead,the doctors have come up with an effective (for now) way to trick my brain. I have a permanent port in my chest so that I can easily get my infusions without taxing my already delicate veins (Ehlers Danlos is another story for another day). While I don't feel great on my infusion days, the next two to three days I really feel good!  

Because of my specific type of dysautonomia, these infusions also help prevent more damage.  When my brain detects a low blood volume, it responds by restricting blood flow to areas of "lesser importance.” The reason I have no large intestine is that I lost blood flow there for too long, resulting in dead tissue and my large intestine failing to work.

At other times, I have lost blood flow to my spleen, my eyes, portions of my brain, and many large muscle groups. I have lost about 30% of my visual field in my right eye and 10% in my left. That’s why keeping up with my infusions is so important: I would NOT like to lose any more vision or organs!

When my muscles lose blood flow, I also deal with tremors and such because it makes the nerves fire weirdly. It is then really frustrating to deal with shaking and poor motor control.

I make sure to walk regularly (nearly 20 miles a week is my goal) to keep my large muscle groups strong and active. Walks outside and on the treadmill have actually become one of my favorite "me time" activities.

I’m certainly making do in the ways that I can, but boy, I sure ask a lot of my body!

It is easy for me to say, "I cannot trust my body!" Or to say, “My body has failed me.” But the truth of the matter is, this is my one body, and I am so thankful to be able to go on walks, cook and bake with my kids, and garden.

And kids! I am just in awe that my body grew these 4 healthy and happy babies. wow.

There’s joy to be found: I merely have to look for it.

Have questions about dysautonomia? I shared some of the basics in an earlier post—you can read it here.

There are also so many products I use to help make my life easier and more comfortable as I deal with some of the issues around my dysautonomia. If you or a loved one is experiencing chronic illness, I hope you find some of these useful as well! See my favorites on my Amazon store.

One Comment

  1. Prayers for you and your family. I admire you for not giving up, and keeping strong in your faith!

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