Chronically Ill Black Lives Matter

Imagine waking up in the middle of the night with sudden, violent spasming in your body. These spasms feel like there is literally a fist on fire, started from the bottom of your feet, squeezing every single tendon. Every muscle. Every nerve. That fire then spreads up to your stomach and clenches it harder than a baby that's got their tint fist locked around a bite of your food. It lingers there and while its there sets off a chain reaction of other symptoms: intense nausea, sudden runs to the bathroom (you know what I mean. The kind that makes you sit and pray to every god you have ever heard about and contemplate life changes if they could just make it stop), and chills. You shake uncontrollably as the fire finally moves on to your head back to the base of your skull. You get a few moments before it all begins again.

What the sweaty HELL is this!? You think frantically over every thing you ate or drank. But this doesn't feel like food poisoning. No, no. This is new. It is scary and for the first time ever you truly feel you are close to death. Giving in to that fear, you have your spouse call 911. You shake uncontrollably, sob, and clench all your muscles praying you wont be back in the bathroom when they finally arrive. You see....you also live in "bad" neighborhood. You know it may be awhile.

About an hour later (great timing for this area actually) they arrive and immediately whisk you away, getting an IV started and meds in so you can have a small bit of relief on that long ride. You tell them take you to what you think is the best hospital out of the three available. You also have suffered from chronic pain and other issues that were always found by this hospital in the past. However....that was pre Covid.

You arrive and you have what feels like caring, compassionate doctors and nurses. They get to work on all the usual imaging and work ups. They discover kidney stones but those "don't cause pain unless they are blocking things". Remember that. Its very important in the future.

Ultimately all the wonderful care and prompt pain control you received begins to slow as they cant figure out the cause, and don't know how else to help when the strongest of IV pain meds fail to work for long. They consult GI. But that doctor comes in, shoots down every symptom you describe, tells you "women have these things. It sounds more like chest pain caused by having large breasts or being obese. There's nothing I can do. Any questions." I kid you not. These are his literal words. You, feeling like complete and utter dog poop at this point shake your head. He leaves. Doesn't even shut the door or turn the lights back out.

You page a nurse to speak with the doctor hoping to gain understanding of what they saw and what your care plan is now. Only....shift change happened. The night doctor is here now. He comes in, secretly runs a drug test on you (you find this out later in your chart app), tells you he has something that may help and says he will keep you in observation. The med the new nurse brings in (who also has a completely different attitude towards you now) is Haldol. You do a quick google search and the first thing that pops up is how it is used on patients addicted to opiods. You get worried, because you actually arent on anything and have zero history on and off record of substance abuse or addiction. Now that observation hold feels scary and after ten minutes you notice Haldol actually did help a little more than everything else. You decide to research it more later and page the nurse to ask about his plan while you are in observation. You also ask for more nausea meds. You are told:

"He said you can have a Phenergen suppository. You wont be receiving anything else through your iv. He said he would rerun imaging though." Her face is in a soft sneer. Almost like shes not aware of her own expression. Her tone is careless and rushed. Like you are wasting their time, get out of here druggie.

A gut feeling tells you to tell them you are better and to just go home. You arent discharged with any meds as the earlier doctor promised. No diagnosis. No referrals. "Follow up with your primary care provider". Remember these words also. You will hear them a lot going forward.

The symptoms start again immediately the minute you get home. You sob in your spouses arms. This isn't fair. You are not an addict. You are not a bad person. You make it a point to comply and be a good patient whenever you need medical treatment. You cant understand how this is happening and why. You decide to take a few sleep aid pills and pray that it knocks you out for awhile. To your surprise, it does more than that. When you wake up you actually feel better. These pills become your lifeline because you also begin training for your new job in a few hours. So you immediately take more and get a order for more to be brought to you. Diphenhydramine, you later find out is similar to Haldol in how it helps GI pain. It is also of note that it is also for allergic reactions. This significance will be brought up by another doctor later.

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This is just a bandaid though. It stops the spasming and helps ease the nausea along with other OTC meds you bought. But eventually, you need to go be seen again. You develop a cough similar to what you recently had a few weeks ago. Concerned it may be a virus or maybe even a bizarre form of Covid you reach out to a urgent care through Telehealth.

You previously had a rapid test a few weeks prior, and clung to the hope you would see the same provider. You ask if that provider could be reached to refill the cough medicine and nausea medicine at the very least and help arrange for testing. However....things fall apart quickly as you explain you can not simply wait in the car for them. That you do not have transportation and can not take a ride share service sick. You get the run around by the agents who set these things up, and a different provider tells you to just tell them she said it was okay. However when you call that facility....you are greeted with a nurse that talks to you like you are trying to request morphine over the phone. She actually laughs at you when you explain your situation, that a worry you also have is missing training for your new job as well as transportation.

"Well prioritize. If you want to be seen you will find a way to make it work." They hang up. Must be nice to have job stability, that you can sit and laugh at others who don't. You sit and cry. And cry. And cry. And hold out hope that you can control whatever this is for a few more days to get to through your first week of training.

This my friends, is just the tip of the hard, jagged, life threatening iceberg of seeking medical attention and care as a black female living in the South.