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

Just Another Curveball

Written by Katie. Posted in Challenges, Chronic Illness, POTS Awareness

It’s no secret that I have been struggling with the ups and downs of POTS the last few months. More so than I have in a long time.

I’ve received a lot of questions, phone calls, emails, and concern from my amazing loved ones, so I thought it would be a good time to put a blog post out there. Plus, I miss writing.  It’s a wonderful way to communicate, help others understand, and to spread awareness which I believe in with all of my heart. Plus, it is simply a cathartic thing for me.

I’m not sure why my POTS has been harder to manage lately, but if I have learned anything the last five years, I know that that’s the nature of Dysautonomia. There are often no “whys.”

So this is the problem. My days are not so consistent right now. There are some days I feel like I am barely hanging on, and there are other days, I feel like I could teach, run a race, clean the house, visit friends…you get the idea. It’s actually a very strange thing. Sometimes, it feels like I live two lives. The hard part right now is not knowing day to day which kind of day I will have. It makes it hard to plan. It makes it hard to commit to anything, and sometimes it makes it really hard to explain; especially since I’m having a hard time understanding myself.

My principal has been asking me lately how I am. My reply the last few weeks is, I am okay TODAY. Because I am not sure when the next POTS “storm” will hit. And by POTS storm, this is what I mean:

It usually starts with a night of no sleep, despite being exhausted. I feel adrenaline surges through my body. I always say it feels like what I imagine being chased by a bear would feel like. This is usually followed by tightness in my chest or chest pain, dizziness, and throwing up. My blood pressure and heart rate begin to go crazy with readings all over the map, and I begin to notice more GI problems and blood pooling; especially after taking a shower. Lately, these “storms” have been lasting a few days to a week, with some weeks being much better than others.

I always say, I can manage my EDS and POTS if I can sleep. If I don’t sleep, all bets are off. My symptoms go crazy and then the storm begins…Sleep and strengthening are my two most important “weapons” in order to function.

So what have I been doing about it?

I’ve been “Katie obsessing.” : ) I’ve been trying to find patterns. I’ve been trying to figure out triggers.

And I have not been so successful.

I’ve been drinking a lot of sleepy time tea and Smart Water.  I’ve gotten massages. I’ve been practicing a lot of deep breathing. I’ve been unplugging earlier to allow myself more decompression time. I have backed off from much of the foundation work for now. I’ve been pushing through with rehab, because I know that if I stop rehabbing, I will be back into braces and Wheelamina (the wheelchair). I’ve had quite a few tears, (understatement ; )) and I have been doing a celebratory dance when I wake up from a “good” night.

Just this week, I have begun to chart my days and nights in a very detailed log, that my psychiatrist and I came up with.

I have been working with many doctors and therapists…Psychiatrist, OMM, muscular-skeletal, gynecologist, physical therapist… since the autonomic nervous system can be affected by pretty much anything:

I started Prozac a month ago, after some tears and a good talking to from my doctor that pretty much went like this:

“Would you go off of your asthma meds?
“No.”
“Then it’s important to understand that for you, Prozac is not just for depression, but to regulate your nervous system. It currently is one of your POTS treatments.”

And TODAY, I am about to get on the road and head to Toledo to see my POTS specialist, Dr. Grubb. I am excited to sit and talk with him and see what he has to say.

So, that is where I am. I am working on figuring it out and trying to remind myself that it is not my fault, I have what I have, and even if some things feel out of my control right now, there are still things that are in my control.

Like, still living despite, and in between the flares.

Like, helping others understand.

Like, seeking out other treatment or management techniques to try.

Like, keeping a gratitude attitude.

Like refusing to let it get to my spirit.

And this is why.

I know I am blessed beyond measure. From the kids I get to teach, to the other “zebras” I get to talk to, to having my GOOD health, to having a medical team who is committed to helping me be the best I can be AND who also treat me as a person and not a patient, to having an incredible support system of family and friends…I have a lot to be grateful for.

My gynecologist looked at me last Friday and said, “Katie, this is another curveball. You know curveballs. You’ve done curveballs. Curveballs don’t last forever.”

So, as I work with this curveball, and work on turning the corner, I appreciate all of you who take the time to read this and understand.

It means a lot to me.

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