05/18/2026
Medical update: I’m recovering, or at least trying to..
I keep having “episodes” where my symptoms spike out of nowhere, and honestly the only thing that’s been preventing me from fully passing out unconscious lately is the fact that I now have my walker so I can immediately sit down when these symptoms come on.
Because of everything going on, my doctors currently have me wearing a 30 day telemetry reader (heart monitor) to try and figure out exactly what’s happening. That’s the fancy thing you see on my chest in the photo 😂
But, on a serious note, it’s still been really scary and extremely unpredictable. Something as simple as just sitting at the edge of the bed trying to get my pants on caused my heart rate to shoot up to 165 bpm… and then at other times, when I’m just sitting down, quietly resting, it can suddenly drop down into the low 40s. My body constantly feels like it’s struggling to regulate itself right now, and some days are definitely harder than others.
I did get a saline infusion the last week of April to help hydrate my body at a cellular level, and honestly it did seem to help with some of the syncope symptoms. After blood work came back showing that my dehydration was better after the infusion, and some other labs that showed that I do in fact have low blood volume, my doctor is now suggesting that we do saline infusions every two weeks for the next three months! 🙌🏻
I just gotta say I am so incredibly thankful for my P*P! After we discovered that the Complex Autonomic doctor she had referred me to was upfront and cash pay only, and that I would need nearly $10k (just for the initial appointment, scans, bloodwork, travel, and lodging 😳) I told her it would take a miracle to get me over there.
Within the last two weeks, she has been educating herself endlessly on my condition so that she can treat me properly. I have never had a doctor go above and beyond for me the way she does nor have I ever had one that listens and is willing to investigate/educate herself even further.
As a chronically ill patient, who lives with these conditions day in and a day out, it is really something else to be finally treated as if I actually know something about my body and not like I’m just some crazy hypochondriac.
So, as of right now, I’m still just taking it one day at a time, trusting the process, and trying to stay hopeful while we figure things out. Thank you to everyone who has checked in, supported us, and been patient with me while I navigate all of this. It truly means more than I can explain.
If you would like to continue to support me and my family on this journey, head over to my website and take advantage of my 15% off discount! Link is in my bio!
Much love and appreciation♥️