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Yesterday I got my trigger point injections!
These are numbing shots that I get every 2 weeks in my neck, shoulders, back and jaw to help with pain and tightness.
It's not the most comfortable thing but they help in the long run. And I love my doctor 🥰

Last year today, October 11th, was my first flight to Milwaukee. I spent 6 weeks flying to Milwaukee once a week, 17 flights in total to participate in a research trial for a treatment device for my health issues. And it worked, it was the healthiest I had been in 6 years since I got sick, it was a massive answer to prayer. Since then I have been waiting for the device to come to my hospital in Colorado.

October was supposed to be the month I got healthy. The device has been postponed getting to my hospital multiple times and I was told I'd get it in October. But now it is October and once again the device's arrival has been pushed back, this time to January.

Being part of the research trial was an amazing experience, I miss my Milwaukee trips so much. I got to help give data to bring a viable treatment to people like me with incurable chronic illnesses. However, because the device is still in trials I don't have access to it. I found a treatment option, that works, it's not a medication, it was life changing, and I can't get it.

October 11th coming is hard, I continue to look forward to the day I get the device again, but it is frustrating to be in the time without it, knowing it is out there and could help me. And I miss Milwaukee, my medical team there was amazing, being there during the fall was beautiful, and my trips were full of moments of peaceful quiet breaths.

Lord willing I will get it in January

Dysautonomia awareness month day 8
Spotlight on EDS!

Dysautonomia awareness month day 7
Spotlight on Pots

Dysautonomia awareness month day 5!
Let's talk about infusions.
I get infusions once a month, I used to get them once a week when my health was worse. I get an IV two liters of saline pumped over two hours. This helps to keep me hydrated and keep my blood flowing smoothly as well as get some salt in my body.
Sometimes I get iron infusions to treat my iron deficiency.

Hydration is extremely important to manage my health. These infusions are one of the biggest reasons I'm functioning as well as I am.

I've been getting them for about 4 1/2 years and I love my infusion clinic. I have become very close with all my nurses and actually look forward to this time at the hospital ad I get to slow down for a while, and see some of my favorite people.

Before COVID I had people come with me frequently, I definitely miss having visitors, but my boyfriend still gets to come!

So very grateful for this treatment!

What is dysautonomia? Here's some info, I have forms POTS and EDS

Tonight Niagara falls lit up turquoise for 15 minutes for dysautonomia awareness month. I got to watch it via live stream surrounded by some people I love and it was a very special moment. I felt very seen, and cherished the 15 minutes of the world recognizing all of us who spend our days in pain, and in the hospital. I love October because our community spends the month giving a little more effort to awareness, we post all the time, we light up the country throughout the month turquoise, because we are celebrating the fact that we are awake today. And fighting still, still having happy moments, and making it throughout the hardest one.

So happy October, get ready to be bombarded with posts about dysautonomia, just to educate, and celebrate. May your feed be filled with turquoise this month.