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Putting Up With POTS
A Blog About Life With Chronic Illness
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Why A Diagnosis Helps, Even Without A Cure
Lately I’ve been having some weird allergy symptoms. I had an anaphylactic response to something, went to an allergist, did a bunch of...
jdsantacrose
Jun 1, 20253 min read


I'm Trying To Stop Blaming Myself
I’ve noticed a trend in my thinking lately where I try to act perfectly to keep myself as healthy as I can. Then if I get sick, whether...
jdsantacrose
Mar 19, 20252 min read


Ivabradine for POTS Management
Way back in 2017 my POTS doctor advised me to try Ivabradine (Corlanor) for the first time. It wasn’t covered by my insurance at the time...
jdsantacrose
Jul 6, 20243 min read


Freezer Meals For Bad Days With Chronic Illness
Eating a balanced diet has been one of the most helpful things in my chronically ill life. Healthy meals, sleeping enough and on a...
jdsantacrose
May 2, 20245 min read


I Have C Diff...Again
In 2015 I got C Diff for the first time. I may have always had it in my intestines and this was my first infection, or I could have...
jdsantacrose
Nov 28, 20234 min read


Disabled Work
I’ve been thinking a lot lately about disabled work. Disabled work is work that is done more often by disabled people or work that is...
jdsantacrose
Sep 10, 202312 min read


Counter Maneuvers For POTS
Counter maneuvers are a series of exercises that can be used in the treatment of POTS symptoms. They are designed to prevent syncope or...
jdsantacrose
Jul 28, 20232 min read


The Problem With Unattainable Treatment Plans
I’m reading a book right now that was recommended by one of my favorite doctors. I’ve really enjoyed and learned a lot from 95% of this...
jdsantacrose
Jul 11, 20233 min read


Doing The Work For My Mental Health
I spent some time reading about the different schools of thought when it comes to long covid (LC) advocacy. Explaining these two ideas is...
jdsantacrose
Jun 2, 20232 min read


How a Traumatic Experience Changes My Reactions
I have medical PTSD, meaning that I have PTSD as a result of medical traumas I have experienced. I suspect that my tendency towards...
jdsantacrose
Apr 16, 20232 min read


My Experience Using a Wheelchair For The First Time
I went on a trip last week that involved flying. This was the first time I’d flown since my POTS got worse a little over a year ago and I...
jdsantacrose
Mar 30, 20232 min read


What Happened in 2022
The year 2022 has been a pretty hard year for me medically. I wanted to write an update on what has happened for those I don’t see as...
jdsantacrose
Dec 27, 202211 min read


A Quick Note About Successes With POTS
One of the hard things about POTS is that the condition itself sometimes makes it impossible to enjoy successes. As an example, I’ve been...
jdsantacrose
Dec 20, 20222 min read


Intrusive Thoughts
Intrusive thoughts happen to everyone from time to time, but they can be incredibly scary if they happen a lot or are violent in nature....
jdsantacrose
Sep 24, 20223 min read


What Medical PTSD Looks Like
This summer I was diagnosed with PTSD relating to past medical experiences. I’ve been slowly learning more about PTSD over the last...
jdsantacrose
Sep 18, 20224 min read


The Challenges of Recovery
Six months ago I was bed bound, or at least couch bound. I could get up to take myself to the bathroom but only with an immense effort. I...
jdsantacrose
Aug 28, 20225 min read


My Experience With Migraines
I’ve had migraines for nearly a decade now. I was diagnosed by my primary care physician in 2013 but they could mostly be controlled...
jdsantacrose
Jul 1, 20223 min read


What Recovering From a Flare Looks Like
For the past 6 months or so I’ve been experiencing the worst flare of POTS I’ve ever had. This has been hard in so many ways but one of...
jdsantacrose
May 13, 20227 min read


Prioritizing Quality of Life
It’s been over a decade since I first became chronically ill. At the time I had no idea that getting sick and never getting better was a...
jdsantacrose
May 6, 20224 min read


You Can Do Everything Right And Still Get Sick
People like to believe that if they do everything right they will stay healthy. Unfortunately that just isn’t true. It’s a terrifying...
jdsantacrose
Apr 25, 20223 min read
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