My Lupus journey began in July of 2017, but I've felt "off" for most of my life. The body is a complex machine and mine just happens to be a little bit more complicated than others. Since my diagnosis, I've had MANY hospitalizations, been on and off of MANY medications, and now do my best to accept the challenges I'm given, thrive under any circumstance, and be a positive force for those around me.
There are many theories on "why/how lupus?" that is a combination of genetics and environmental factors. I tell my pregnancy and son's birth story to illustrate one experience of how I think the change in hormones became a huge factor in lupus flare and ultimate diagnosis.
Lloyd's Birth Story:
When I was pregnant with my son in 2013, I showed the first signs of Raynaud's phenomenon, a condition resulting in discoloration of the fingers and the toes after exposure to changes in temperature (cold or hot) or stress. Raynaud's is also an important marker for lupus/autoimmune disease. My pregnancy was uneventful, until it wasn't- I was diagnosed with HELLP Syndrome at 31 weeks (surprise- also an issue that effects a higher instance of lupus patients).
I hadn’t been feeling well the previous 2 weeks and chalked it up to just being pregnant. Felt sluggish and “off” and had some gastro-intestinal issues and swelling in my feet and face. I scheduled a doctor’s appointment, they took all of my vitals and did blood work. With the exception of a slightly elevated blood pressure, was sent off as just having a stomach virus.
Meanwhile I had some random issues- slight pain in my upper right abdomen, headache, and more swelling- these things came and went. I went along with my usual routine of work, taking care of home, and grad schoolwork. By Thursday, June 19th, I was just really not feeling well, so decided to call in sick to work and spent the morning in bed. I slept a bit and hardly ate. Showered and dressed for my bi-monthly doctor’s appointment and drove myself in. Got to the 2PM appointment and vitals were taken and urine sample tested. Not sure what the BP was then, but it was elevated and there were traces of protein in my urine. Was told to go to the hospital for observation. I asked if I had time to run home to grab some things- “No, you need to go right now.” Cue freak out.
Called Dan and he left work to drive me to the hospital. From here it’s a whirlwind of monitoring, blood draws, and one specialist after another coming in to inform/obtain consent. At this point I was finally informed that I did have severe pre-eclampsia which was then escalated to HELLP [H- hemolysis (breakdown of red blood cells), EL- elevated liver enzymes (liver function), LP- low platelets counts (platelets help the blood clot)]. The only treatment for HELLP and to avoid serious complications for mom and baby, is to deliver the baby. With that course of action, a steroid shot was given to mature baby’s lungs. I was put on magnesium to try to control BP and prevent seizure/stroke. I was told that I wouldn’t be leaving the hospital until I had the baby. I was thinking, “I’ll be here until August? That’s over two months away!” I had no idea how very sick I was.
Initially, doctor’s wanted to see if I’d be stable for 48 hours in order to get baby another steroid shot to mature his lungs, but I was really crashing. Pre-seizure tremors were taking over my body and it was determined that an emergency C-section was the only option. At 11:45pm I was prepped for surgery and after having some concern about platelet count, it was determined that I WOULD be able to be awake for the surgery by only receiving a local spinal anesthesia, which ultimately I am grateful for (general anesthesia would’ve taken a toll on my already weakened body).
I was wheeled into the operating room at 12:00am-ish and in my delirium asked the attendants if they were going to bring in the machine that goes “PING” a la that scene from Monty Python’s “The Meaning of Life.” No one got the joke. They prepped my spine and anesthesia was administered. Numbness was quick, but I could still feel pressure though no pain. Dan, dressed in scrubs, was brought in for support and we “hid” behind a curtain strategically placed across my chest. I did my best to stay calm, though it was the most uncomfortable and out of control my body has ever felt. The shaking continued in my upper body since the anesthesia only effected below my chest. The operating room anesthesiologist tried to get me to control the tremors in order for him to take my blood pressure, but it was all out of my control. I was anxious and intent on hearing my baby being born. I mistook the sound of the suction as my baby’s cry and became overwhelmed by emotions. That was rough. Then a few minutes later we heard his actual cry as Lloyd Ulysses was born at 12:26AM at 2lb 13oz. He was immediately whisked away by the neonatal team to stabilize him.
What had been a fairly silent operating room during the procedure (with two very capable, senior surgeons- they don’t assign residents to these cases) was then filled with surgeon chatter about their vacations and children as they closed me up. This was actually really comforting and distracting.
I was then sent to the anesthesiology recovery room where I waited 3 hours for the numbing meds to wear off- impatiently trying to will my legs to move. My parents had come earlier in the day and they came in to congratulate me on being a mom. I didn’t feel like a mom. I hadn’t actually met my son yet, but Dan was able to see him. I hadn’t really prepared myself for the birthing experience, as I had been 2 months away from my due date, and this was as far from anything I could’ve ever anticipated.
Some time around 3 or 4am, the numbness in my lower half wore off and I could be moved up to the maternal special care unit. On the way to the unit, the transport nurse let us stop in the neonatal intensive care unit (NICU) room 3 (later on, we would learn that NICU room numbers meant something. Room 4 was most severe cases, then down from there. Room 1 is where babies are healthier, stable and will hopefully be discharged soon). The NICU room is a large hospital room where anywhere from 6-12 babies room. It’s fairly chaotic with lots of beeping monitors, nurse activity and life sustaining equipment. They expertly wheeled my stretcher through this gauntlet of equipment to the back of the room, where little Lloyd was in an open bassinet and he was fitted with breathing tubes. I can only recall that I was happy to see him, but any other thoughts or emotions were a blur.
That blur continued. With everything going on around me, my responsibilities, and what I like to think of as my naturally good disposition as a patient (I like to make doctors and nurses smile), I had held on to a lot of control until finally it was time to admit that I was very sick, had just been through major surgery, and was now a mother. It hit me all at once and I responded, not by choice, with lethargy and malaise.
I was in the hospital for 6 days. Dan slept on a couch in my room and didn’t leave my side unless to take family members to visit the baby (NICU has strict rules on having no more than two visitors at the baby’s bedside at a time, one of which must be his/her parent with the appropriate wristband identification). Every three hours a nurse would come in, take my vitals, and administer pain medication and magnesium to prevent seizures (I was still high-risk for seizing/stroke; HELLP condition can stay with the mother 2-3 days after delivery of the baby). I didn’t sleep. I didn’t eat. I couldn’t leave the room and visit the NICU, because I wasn’t strong enough to get into a wheelchair. After a few days they removed my catheter and I began the very slow and painful trips to and from the commode. I can’t recall what happened on what days, it was all a blur.
Close family and friends visited, all wishing Dan and I congratulations. I tried to be pleasant, but some days I was more irritable than others and just couldn’t be bothered. My grandmother was devastated by all of this news and with my uncle’s help (she doesn’t leave the house much) made the trek to New Haven to see me in the hospital. I was grateful for her visit and I think the visit helped her a lot (she’d been praying and frantically doing other nervous grandmother what-not) knowing that Lloyd and I were both stable and in excellent hands.
The last few days of my hospital stay I was able to get in and out of a wheelchair and eventually could walk myself down the halls and to the elevator to visit the NICU. I spent a lot of time just sitting with Lloyd and talking. He was heavily tubed- feeding tube, breathing tube, monitors- and was in an incubator, so he was impossible to hold. Just touching him took caution and care not to disturb a tube or monitor. It was hard to not be close to him.
My discharge day was hard. I felt terrible leaving him in the hospital, but I was well enough to continue recovery at home. It was surreal going home, no longer pregnant and without a baby. We hardly had any baby stuff (my baby shower was actually scheduled on June 29th- exactly 9 days after he was born. It was rescheduled). I couldn’t drive to visit the hospital, so I’d wait for family members to come and take me. Dan and I also visited every night when he got out of work.
Cue another blur of hospital visits and attempts at bonding with this tiny little person. About a week and a half after he was born, an amazing nurse said that I should hold him (“No mother should not be able to hold their child”) and she rearranged his tubes/monitors and I was finally able to hold my impossibly tiny little boy. From then on Dan and I did “kangarooing” (holding baby on bare chest for bonding) every chance we could. I also attempted breastfeeding, though he was too small to latch. I tried pumping, but overall my milk supply was very low and I felt terrible I couldn’t provide for him. Like so many things in this whole situation, I just let go and reminded myself that my body has been through so much. I didn’t need to give myself more undue pressure.
Lloyd was in the NICU for 38 days and it felt like an eternity. He steadily moved through the rooms. Within two weeks of his birth he was moved to room 2 and then a smaller quieter room 1. He was labeled a “feeder and grower” as he had no major health issues other than needing to eat from a bottle and gain weight. Dan and I learned so much from the nurses in the NICU- how to diaper, feed, bathe, swaddle, and administer medicines. I am grateful the NICU nurses- they were the ones who were with him 24 hours a day and when I couldn’t be.
Talk of Lloyd’s discharge was a rumor and then quickly became a fact. When not with him, we buzzed around getting things ready at home. We brought him home on July 27th. He was put on such a good schedule in the NICU and like clockwork he ate every three hours and slept. It was wonderful. Dan and I took turns during the overnight feedings. Other than that we snuggled and did absolutely nothing.
Lloyd just turned 5, is thriving, and we couldn't imagine our lives without him.
I’m Walking to End Lupus. Join Me?
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now® to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!