Let’s take a look again at one of the pictures I posted last week. How many of you noticed that the hand on my hip was turning red in the fingers and knuckles? Just a road sign to anyone who knows to look for it that I’m on a post a-POTS-calyptic road. When I am standing, both my hands and my feet will redden.

Right now I’m in a situation where my therapy days are lasting from around 7 am to around 8pm Monday through Friday, and then a few hours each weekend day. A year ago, I really couldn’t do as many hours as I am right now. My journey has been a gradual one, but I feel grateful for being able to move forward along this path in any manner. I still can’t be medicated to help regulate my standing and moving heart rates, so I’ve been engaged in a process of trying to gradually retrain my system to handle certain things.

Now, I’m going to be upfront that this is just what I’m doing from the vantage of taking a detour outside the guidance of a doctor. As previously discussed, my former cardiologist’s position was that they were happy to see me when my husband isn’t treating COVID patients. He’s always treating COVID patients right now, and quite frankly, it’s terrible for my mental health to support that as a customer. After everything I’ve been through in recent years, I don’t want to be mean, and I can respect their rights to do whatever in their own personal practice, but mentally I just can’t with that from anybody who works in healthcare and pay them in money that could have come from treating those COVID patients. Families such as ours shouldn’t be relegated to the rest stop of second-class patienthood.

The make up is always about my mental health…it doesn’t just bring the colors, it brings the happy.

So, this is me talking about what I am doing outside of advice from any physician. Usually, in my experience with the current medical model, if nobody can medicate you, they’re not spending time talking with you about lifestyle modifications anyways because they don’t really have that kind of time with the way current reimbursement models work and many patients aren’t interested. For the record, I’m personally always interested in staring my journey with lifestyle changes. So since that’s where I had to start from, that’s the journey I’ve continued to be on.

The first thing I personally did was look up a bunch of studies and articles, but some of it has just been a journey of finding out how my system on POTS processes different things because there is some person to person variability with that. I can’t even do a regular cup of decaffeinated coffee or my system reacts….I have to use half the amount of grounds to prepare it, same with my Crio Brew. Not everyone’s system is so sensitive to caffeine that way when they have POTS. And for some reason, celery…holy cow, I have never really liked celery, but my post POTS system craves this stuff as a fuel because it actually really helps my system regulate my heart rate better. Possibly a combination of the fiber and some of the natural compounds that promote relaxation in it. I can totally see a difference after I eat celery to the point where I have a stalk with breakfast, lunch, and dinner.

I also do a mix of cardio related activities at different intensities meant to challenge my autonomic nervous system on multiple levels. One of the things I’m currently working on is trying to retrain my system to react and adjust better when I need to stand up quickly. Once upon a time, I used to be a person who did Burpee workouts. When a person is meandering on a post a-POTS-calyptic side road, that’s hard to reach on the map. So, what I did was borrowed and heavily modified an already modified burpee workout given by Jen Ator and designed in conjunction with BJ Gaddour in a book I purchased from the Amazon (way back in the day when I was still willing to let them regularly throttle our credit card).

Using the base of our stairs instead of an aerobic box, I started as many steps up as I needed for my heart rate at first, stepping slowly into a modified plank position. This gave me a handrail to grab in case I needed it. I started out moving slow with low reps and needing a lot more walking out between sets. Then I moved down the stairs, moved up the reps, decreased the walking between sets, that sort of thing. Then I worked up to adding jumping jacks after a set of twelve step-outs from the bottom stair. I am not putting any sort of jumping component after each step-out yet because safety is my priority. I don’t want to end up passed on the floor because the changes in position and movement were too sudden, so I want to make sure the changes I’m making are gradual for safety reasons since this involves sudden ups and downs- which are a bigger challenge to the system for someone with POTS.

Yesterday I was finally able to move to 10 step-outs per set on the floor with ten jumping jacks after. Just loosing the bottom stair made an immediate difference in my heart rate. And so it will go. Eventually as my heart rate goes down after each set, I’ll move things up to jumping back, to jumping after, to adding a push up. Probably that’s a ways away still…and maybe sometimes it’s more frustrating to have a path that’s less direct to what I want. And definitely it’s something to work through when so many things dramatically change at once in regards to what your body is doing and what you are capable of. Developing mast cell activation syndrome and POTS changed some things about my journey and there was an immediate grieving process that I needed to respect and move through. But I’m so thankful that I have been able to make lifestyle changes and physical progressions that have allowed me to be at a point nearly 18 months later where I can put in the kind of work that is needed for our family right now.

Now, some of you may be noticing my title. Typically I don’t play with words in exactly that manner, but I was inspired by a poet I have been reading some from recently. She’s very creative with the word play, and I love it! I am linking one of her poems below (you can click on the title below to read it) that seems to speak to what I feel about my post a-POTS-calyptic journey right now.

Morning, by Margie