...at least you have your health

It was December 12 when I first realized that the left side of my face was ever so slightly swollen. At the end of the year farewell party, I had three friends verify that I wasn't seeing things over grass fed Colombian steak. I figured it was just a blip in my otherwise healthy life and danced the night away, knowing that I would be leaving Colombia on the 20th.

Once I got to the Amazon with my old roommate from Cairo, my face was a bit bigger and more noticeable, but I wasn't about to let painless face lumps dampen my dream to explore the rainforest.

When I landed in New Orleans later that week, asking my eldest sister if she could tell about my face practically burst out of me. Maybe I was slightly more vain than I'd ever admitted to myself? She confirmed that my face was swollen and that the lump was hard, but I assured her it was painless. She was concerned to say the least.

As we prepared to drive up to Virginia to spend the Christmas holidays with the family at Stephanie's new townhouse, she decided we'd drive to an urgent care there first. I agreed since I wanted my face back for all the family pictures that were sure to come - and because "you have cancer and you're gonna die!" was already repeating on a loop in my head. Maybe every boyfriend I've ever had and all my sisters are right - maybe I'm a tad dramatic. C'est la vie.

After a quick visit with a doctor who looked like she'd seen better days, she said I had an ear infection, gave me prescriptions for antibiotics for the infection and steroids for the swelling, and sent me on my way. While the steroids did take the swelling down, I was starting to piece together my other symptoms.

"Do you have night sweats?" asked Samantha as she looked up from her phone.

"Yeah, but I have for as long as I can remember," I replied, feeling badly that I had sworn her to secrecy. I didn't want to worry my pregnant sister, my other recently married and blissfully happy sister, or my worry-prone mama with my conjecture and speculation. After all, I've always been healthy, this was definitely a fluke.
"You got diagnosed with chronic dry eye in 2015?" asked Samantha.
"Yep," I replied.
"You've had these pains around your ribs for years?" she questioned incredulously.
"Yeah, but only about 3-4 times per year, so I never thought it mattered," I said with a shrug while pulling a face.
After Christmas and after ringing in 2020 in a drunken haze, we went to another urgent care in NOLA. Diagnosis? Swollen parotid glands. Treatment? Suck sour candy and drink lots of water.

The main problem with that was that I was already drinking water at a fairly alarming rate. I was so dehydrated that I was draining my 1000mL water bottle 4 or more times per day. Add on to that that I was incredibly fatigued, as in sleeping 14+ hours a day when I could fatigued, and I still called bullshit. However, I accepted the good news that I desperately wanted to hear and decided to jump across the ocean again.

I spent a month in Andorra, and most of the that month was spent in bed exhausted and/or with my  mouth glued to my water bottle. I was also dropping weight quickly and without trying. I was too tired to finish my day teaching at times and knew something was wrong, and I knew it was definitely more than just my saliva glands.

Increasing health concerns + hating teaching complete beginners English at a language center = hopping a plane back to NOLA on February 10.

This time, I saw a real doctor as I now know that urgent cares are for fixing problems, not finding them.

Blood tests and physical exam done, no answers.

Late February, dental appointment done, one answered question: my facial swelling was not part of a dental problem.

Since my sister, whom I get to stay with rent-free in the Crescent City, had to go to NYC for work, my mom came from Alabama to properly baby me during my post-dental appointment time of need. I love my family.

Since I was nitrous happy and hadn't seen her in a couple of months (and since I was still adding up my symptoms and confident of my impending demise), I decided to tell her everything.

Marilyn's Symptom Tracker by 30th Birthday:
  • Extreme fatigue
  • Dehydration
  • Unexplained weight loss (25lbs since Christmas)
  • Fever and headaches
  • Pain around ribcage (sharp and random)
  • Night sweats
  • Rash on lower legs, swollen left ankle, pain around ankle/lower legs when gently hit/knocked
  • Swollen parotid glands (both sides of face)
  • Swollen lymph nodes (under the neck)
After my birthday, my eyes got worse. I started having incredibly red, itchy, painful eyes. I thought I had pink eye, but really light-sensitive pink eye. My vision also started to get blurry with dark shadows creeping across my vision every now and then. 

I was freaking out. Proper freak out. Force five freakout. 

Since my mother is not one to waste time, particularly when it comes to her four girls, she made me a doctor's appointment for almost the next day. I must admit, my Bama doctor was wonderful - she listened, cared, and did every test in the book to figure out what was happening, including crossing off some scary diseases. Was being tested over and over again fun? Obviously not; however, getting closer to answers was more than worth it.

After my bloodwork came back as being positive for autoimmune disease markers on Monday, she wanted to do a chest x-ray on Wednesday, which I did. Samantha and I were in Wal-Mart, picking up a few things before heading back to NOLA when her office called asking me to come in to go over the results. This was still Wednesday.

"It's bad news when they call you the same day to go over results, isn't it?" I asked Samantha while looking at eye drops to help my inflamed eyes. "It's bad news, I know it is."

"You don't know that," she replied, but I could tell she was nervous, too.

A mass on the upper side of my right lung and several smaller nodules as well. Great.

Time for another appointment, this time in Mobile, for a CT scan with contrast dye to investigate further. On Friday, my mom, sister, and I drove over to have it done. Painless except for the IV, quick, and with results on Monday.

They wrote four possible diagnoses on my scan results page: sarcoidosis, metastatic disease, lymphoma, or tuberculosis. 

In my mind, I'd just gotten diagnosed with cancer. Freeze my eggs, shave my head, put a vomit bucket next to me, cancer. However, the CT nurse had said to me, "don't think the worst until you hear the worst," and that stuck with me.

Four diagnosis possibilities and I needed to know which one it was. At this point, COVID-19 was in full swing in the US and I was already self-isolating at home with the fam, but I couldn't bring myself to care too much about it. It's hard to worry about possibly contracting a virus when you're afraid you already have a worse one. 

As I waited for my endoscope appointment date where my doctor would clean my lung and do a small biopsy, I watched as coronavirus news scrolled by on the TV and my mom and sister sterilized the entire house and every grocery bag. 

On the day of my consultation appointment, I was running a fever. At that point, a fever was as normal to me as going to the bathroom. Cue all hell breaking loose in the waiting room as they quarantined and tested me for COVID-19. After I had a long cotton swab shoved up my nose, I was told I couldn't see the doctor that day - I had to wait until my test results came back, meaning I couldn't schedule the biopsy yet, meaning I couldn't get answers yet, meaning the tears started flowing for the first time since I realized I might have a disease.

"I don't have coronavirus!" I practically screamed at the nurse who looked more than uncomfortable behind her mask, face shield, and other assorted PPE. 

Eventually, she let me talk to my doctor via phone and he assured me we'd schedule the procedure for as soon as possible after my negative test results came in.

The following Tuesday, also known as six days later, it was confirmed that I didn't have COVID-19 and scheduled for the biopsy for that Thursday. I was excited because answers were finally within my grasp after 3 months of wondering, clutching at my ribs in pain, ibuprofen-ing my fevers and headaches away, and avoiding corners like the plague for fear of touching my legs. However, I was also scared because answers were finally within my grasp, and I didn't know what I would feel if those answers weren't good.

One tube down my throat later, 2 days of soft food on the couch, and 6 days of waiting for a phone call, and my doctor ended my suspense: sarcoidosis.

Not cancer. I breathed, smiled, and thanked him on the phone as I listened to my mom request medicine to help manage my symptoms. I let the "not cancer" wash over me in a wave of sheer joy. 

The problem? Autoimmune. The cause? Unknown. The treatment? Steroids and waiting for the long flare up to end. Next steps? Visiting an ophthalmologist for my eye problems and a lung function test in three weeks. 

After a breakdown at the thought that it's lifelong and there's no cure (what's life if you don't cry on your mama's shoulder every now and then?), I was as happy as I could emotionally be in the moment again. 

So here I am, one week into my steroid treatment and I already feel so much more like myself. I have more energy, the swelling in my face and lymph nodes has gone down, I haven't had a "cherry red, searing pain, don't look at any light source" vision day, I'm not as dehydrated, and I feel like I'm getting better. I'm worried that once I get weened off the prednisone I'll get worse again, but a lot of people with sarcoidosis have these terrible flares and then never have symptoms again. Ever. I hope I'm one of those people. 

How I spent the latter half of my illness and my stimulus check: subscribing to Book of the Month and then reading + drinking in my childhood home's sunny front yard

So now, follow up appointments in my calendar and medicine doing its job, I'm feeling better about my health, just in time to remain in coronavirus isolation, keep socially distancing, and have the mental bandwidth for the first time in months to actually worry about the global pandemic. Awesome.

One day at a time. Sometimes, one quarantine project/puzzle at a time. However, I am now more aware than I've ever been that "having your health" is something to cherish indeed, because when you're feeling like your body is turning off and you have no idea why, there's nothing else on this incredible rock that matters. Except maybe your faith and your family.


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