When you have #ChronicIllness, your days are really varied – but usually within a certain framework. For example, I have chronic angioedema (tissue swelling) caused primarily by foods I eat and mast cell flares. I don’t always know how much I will swell or what will cause it or which body part(s) will be affected. But, I can manage day to day knowing roughly what to expect.
However, when the unexpected occurs and you are a very complex patient, it can be strangely difficult to get answers and direction.
For example, recently I had some very bad throat swellings related to, I think, ingesting vanilla extract (which is a new allergy for me). During my last episode I dosed up with all of my medications and benedryl put me to sleep, as it always does. I woke and had a feeling of lightning in my left chest and in my jaw. I tried and failed to convey this to my husband, who was sitting next to me. Then the drugs put me back to sleep. It was a very brief episode, but in the moment, I thought I was having a heart attack.
I refuse to go to the ER, because I can’t afford to pay 20% of the inflated medical prices there. So, I consulted my trusty friend, Google instead. I very quickly found “allergic angina” (also called Kounis Syndrome) to be a possible cause of my transient heart and jaw pain.
The next day I contacted my cardiologist and my allergy/immunology specialist. I am due to have a pharmacological stress test of my heart later in the month, but thought, of course, that my cardiologist should be aware of what happened. Their office said to tell my allergist. Well, of course, but my allergist will say to tell my cardiologist.
This is not the first time I have been caught between specialties and I can’t help but feel that it affects my care to fall in the cracks this way. I also routinely find my specialists, who I have seen for years, often say things that indicate they do not really understand the challenges I face. For example, my cardiologist was surprised to learn I have Ehlers Danlos at my last appointment. I have had that diagnosis for a long time. He also was unaware that I had angioedema and mast cell activation syndrome. All of these were formally diagnosed years ago.
When I provide my history, I include everything, and I also include all of the medications I am taking to treat my conditions. But specialists seem to wear blinders to everything not directly in their specialty. When a problem hits that crosses specialties, it’s the patients who bear the brunt of this #Blindness.
I long for the day when all specialties treat us as whole people with the totality of our conditions. Our care can’t help but be better for it.
Have you been affected by cross-specialty blindness? I look forward to reading your stories below.
#IdiopathicAngioedema
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