It started with my blood pressure. In 2014, after nine years teaching in schools, I started having the palpitations… the sudden chest pains… the headaches. Lawrence — my first husband, now deceased — noticed the sudden change in my attitude and mannerisms, and he demanded that I see a doctor.
“Take a day off and go to the doctor, Terri. You have to do it.”
So I did. And what did the doctor find? 160/100.
“Your blood pressure is hypertensive,” Doc 1 said, “and you haven’t had this problem before. What’s going on?”
“It’s school,” Lawrence interjected. “Too many hours, too much work, too much worrying.”
“Oh my God,” Doc 1 laughed. “Are you a teacher… because all of my teachers have this same issue. They get to a certain point where the blood pressure can’t be controlled… I don’t know. I suggest finding a new career.”
And they laughed. And that was the beginning of Ativan and Amlodipine.
Then came the hives. At first, they were little bumps like mosquito bites, and that made sense because we were living WAY back in the woods in Early Branch, South Carolina. There were a LOT of biting bugs.
“What’s that on your legs,” Lawrence asked.
“I guess mosquito bites,” I shrugged. “Itches bad. I’m trying not to scratch…”
But I did scratch sometimes, and they grew bigger… and bigger… until the entire front right of my thigh was covered in a huge, hard, hair-follicle-spotted, hot mass with raised edges.
“Maybe it’s an allergy? A spider bite?”
So we went to an Doc 2, an allergist, and I had the pin-prick test. But it wasn’t allergies. Some home remedy research online led me to camphor, and I was able to use that to coax the hives away with warm compresses, but (you probably know) they kept coming back… on my arms, the nape of my neck, my breasts.
The mass on my breast was the most frightening.
“You have to go to the doctor,” Lawrence said. And we did. The hive on my breast was lanced by Doc 3 to be checked for cancer cells. But it wasn’t cancer. And my blood pressure was still out of control. It was another six months to a year before an older doctor at a Doctor’s Care facility, Doc 4, looked at the most recent mass on my stomach and said, “Oh… that’s urticaria. Let me give you a cream and a pill, and that’ll take care of it. Nobody knows what causes it… but here’s how to treat it.”
And that was how I ended up using Ativan, Amlodipine, Amoxicillin, Clobetasol Propionate cream to control the blood pressure and the hives.
My wrists… and my fingers… strange things started happening to both. By this time, my first husband had died and I was under a great deal of stress, understandably. I had been keying 100 words per minute since my teens, and by this time I was a school administrator needing EVERY BIT OF KEYING SPEED POSSIBLE. So at first, I thought maybe I was going too hard on the keyboard.
But then, my knuckles started to swell and my fingers became to pop. I’m thinking, what the hell… do I have arthritis? Because, after all, that’s when your figures start to pop and you start having joint pain. Three weeks later, I could hardly open my hands to lift small, everyday objects. It hurt to get dressed. It hurt to reach. My hands were becoming unusable and I…
Had to go to the doctor.
“It carpal tunnel,” Doc 5 said. “It’s an overuse injury. You can take it easy, maybe take a vacation from work for a while, and let it heal, or you can wear a brace on the affected hand… or you can have a surgery to repair it, but I recommend a break. You’ve been through a lot, you know. You probably need three months to just recover.”
And I felt like then was a bad time to take a break. So, that’s how I ended up using Ativan, Amlodipine, Amoxicillin, Clobetasol Propionate cream, and two carpal tunnel braces (one on each hand) to control the blood pressure, the hives, and the pain in my fingers, hands, wrists.
It was just another month or so before I felt the smaller clot sliding up the front of my calf on my left leg. I understand now that I was lucky. Lots of people have blood clots and never feel them, but mine announced itself loud and clear. By this time, my father-in-law had moved in from the Bahamas to help me with my homeschooling son, and I told him about the movement I felt in my leg.
“Sounds like a clot,” he said. “Could be dangerous. You should go to the doctor.”
And I did, but Doc 6 didn’t find the clot. It wasn’t until December of that year, after rushing to the emergency room with a pulse in the 140s, after having my swift gait reduced to a struggling limp, after spending all night being tested for various things, after finally running into a nurse practitioner who ordered the CT Scan, that they found the pulmonary embolism (a lung clot) in my right lung and a nearly occluded blood vein (deep vein thrombosis) in my left thigh. The little clot must have just broken away and went on its own promenade. After it was missed by Docs 7 and 8, a nurse practitioner saved my life, and I was treated with a Heparin drip.
And we STILL hadn’t found the Lupus.
Cardiac Distress? Arrest?
The jury is still out on what exactly happened in March of 2018. You don’t have to swing back to the beginning of the article. I’ll do the math. It was four years later. I took a flight out to Phoenix, Arizona for a doctoral residency, and I started having severe chest pains on Day 2.
Initially I thought it was stress. I actually went to Massage Envy and had a massage, and I was in cardiac distress the entire time. I ate a taco bowl from Chipotle and went back to campus and continue working on my Prospectus, but the pain became too great and I figured I’d better go to the EMERGENCY ROOM.
Good thing, too, because by the time my rental car pulled up in the parking lot, I could barely breathe or speak. The receptionist looked at me, young, gasping, crying, and said, “What happened to you?”
And I’m thinking, I have no idea, but I was able to communicate well enough to get me onto a gurney and hooked up to an ECG. And then I waited. And my blood pressure was out of control. And I felt like maybe I was dying, and maybe I should have taken a break, and maybe I’d better notify my family.
So I called my sister and my closest uncle, and I told them I was having a cardiac situation and where I was, but “Don’t tell Chad.” He had just lost his father. I couldn’t tell him what was going on unless it was proven serious. And, quick frankly, if I died it was serious.
Doc # who knows what number at this point came in and explained the ECG results. He said, “Well, it looks like you may have had a minor heart attack at some point, but I think that’s an error. Sometimes these readings can be a bit off, and you’re young… but I’m looking at the symptoms you reported to us and I’m worried that we are missing something significant. We need to run some tests.”
And we ran a lot of tests, but it was one guy at Abrazo Central who — somehow — got his hands on my chart, and digested my history, and came in and looked at my face and said outright, “I think it’s Lupus. I’m looking at your white count, and your iron levels, and your symptoms, and I want you to please stay and let me check you for Lupus.”
But I couldn’t stay because my flight home was leaving in two days, and I had no way to sustain myself in Arizona, so I had to discharge myself AMA — against medical advice.
The doctor and his nurse explained to me the danger of flying at this point. I was reasonably heparinized, but there could still be clots moving about in my body. Flying could kill me, but — apparently — so could lying there, so what did I have to lose?
He explained to me that as soon as I landed, I needed to go to my primary care doctor and have blood tests done for Lupus.
The Lupus Test
My primary care doctor was mortified. I could tell. I suppose I should have told the receptionist why I was coming when I made the appointment. That would have given him time to digest what I was suggesting could be wrong. But, I told him face to face that I wanted a Lupus test, and he couldn’t hide his surprise or his worry.
“It can’t be Lupus,” he said, his face a bit ashen. It was only a moment, and he recovered, but I saw the seriousness of what it would mean if it were Lupus. But I was determined to have the test done, and he ordered it right away.
It took two minutes. A nurse drew two vials of blood from my arm, and the next day we knew. It was positive. And that was only the beginning, but at least we knew what the cause was of all this mayhem.
If Everything Is Wrong, Brown-Skinned Girl, It Could be Lupus
I struggled with whether or not I should write this story, but it occurs to me that there are many brown-skinned girls out there who might be living this reality. A Lupus test is so simple, and it is so easy to request. If you are finding yourself running to doctors about strange symptoms, don’t be too quick to blame it on your ancestry or your work schedule. Have an ANA panel done to find out if you are struggling with an autoimmune disease.
Don’t jump to the conclusion that you must be dying. You might just need to make some simple adjustments to start living again.