This has been one of “those” weeks. I have been struggling with an infection. I have a UTI (urinary tract infection). For most ladies, this is fairly straight forward. It is miserable for everyone but pretty easy to diagnose and cure. Not for me, of course. I am a Zebra, remember? I look like a horse but I really am not just a horse. I have weird stripes. I can’t even go “neigh” properly.
Those of us in the CVID (Common Variable Immuno Disorder) world refer to ourselves as Zebras. We all have different stripes. Also, it comes from an old saying doctors are taught in medical school, “we you hear hoof beats, think horse.” in other words most patients who have the same symptoms and will have the same course of cure…
However with us, the phrase goes, “when you hear hoof beats, think…. Zebra!” Zebra is the term doctors give patients who do not fit normal parameters. We tend to not respond normally to tests and to complain a lot. In general, we are sick and we cause a lot of trouble for doctors who are fond of curing people. My hunch is the docs don’t like Zebras because they cannot fix us.
As a result, we often get blamed for being sick. I know that sounds crazy but that is exactly how it is. This week is a good example. I ended up in ER on Sunday after five days of pain and nausea and feeling bad. The doctor got angry with me. He diagnosed my UTI but was so upset by my chart, which showed multiple visits for a mysterious gut problem, that he would not even discuss the UTI with me.. In the end I was treated as a problem child. I was not given my prescriptions or exit orders or offered a wheelchair, just told to dress and leave. I had to call back to get my prescriptions. Somehow, I had offended the system. I think I might have tried to assert myself too much by explaining my issues. When the doctor did not understand he wrote me off as a head case and drug seeking. He got me out of there as soon as possible.
Since then, my infection has worsened. My fever, which is never very high by normal standards is staying over 99. This is important for me because my normal level is about 97. Zebras have a hard time mounting much of a fever because we don’t have an immune system that fights when we get sick. But, no one really gets that. They just think we are nuts.
I had an ultrasound on my kidneys yesterday and I will see the nurse practitioner for my urologist today. Maybe they will give me stronger meds. I don’t know. My motto now is: “expect nothing.”
Even though I am pretty sure I have a kidney infection, I cannot prove it. My body does not tell all on a standard test. I am a zebra. Doctors don’t like Zebras.
I figure if I get sick enough someone will notice. Until then, I will just trot along and feel like a zebra who got caught by a hippo while crossing a water source. The hippo chewed my kidneys off and I feel funny but NO PROBLEM…. I’m fine.
Just look away….
This whole entry resonates with me. I often feel like I get blamed unfairly for being sick. Like I can just choose to be well and viola my Dr.’s can get credited for “healing” me. Being sick is like being a thorn in their side that they don’t like. It’s like I’m bothering them for asking for their help. They are too busy to hear me out. I’ve offended them. It’s like I have to be a patient that acts a certain way. Some of my Dr.’s lack in compassion. Some of them seriously lack a good bedside manner. It’s like it’s my fault that they can’t help me.