GoodHeart | Living with lupus: Danelle Pinnock finds strength in family and faith

Danelle Pinnock had been on a beautiful journey of marriage and motherhood, having tied the knot with the love of her life in 2010 and welcoming not one but two children. Then, in 2012, the unthinkable happened: she was diagnosed with systemic lupus erythematosus (SLE). Life as she knew it had changed forever.

“SLE is systemic, so it affects any and every system in the body. Thankfully, I have not had any major organ failure, but I have had to deal with a lot of infections,” she told GoodHeart, adding, “Because, with autoimmune illness, I’m prone to infections. But, being on the medication, Prednisone, makes me prone to infections as well. So, it’s a catch-22.”

Prior to her life-changing illness, Pinnock admitted that she wasn’t superactive, but she wasn’t sickly either, “I had a regular life. I didn’t have any inkling of what was lurking. When I was diagnosed, I had a one-year-old and just had my daughter. So, life was pretty busy with two under two.”

At first, she thought her symptoms were related to the post-partum period. Her husband was also unwell and she assumed that contributed to her exhaustion. But, one day, she woke up and couldn’t move. When things didn’t improve, she went to the doctor, who began investigating the possibility of fibromyalgia.

The results of the blood test, however, pointed to an autoimmune disease. “Further tests were done and those confirmed that it was lupus,” she shared.

While she was coming to grips with the diagnosis, her husband’s condition worsened. A week later, he was diagnosed with Stage Four non-Hodgkin lymphoma.

“Things got intense quickly. We both deteriorated to the point where some days neither of us could do anything for ourselves, much less the children. There were days where I was [feeling] so much pain in my hands that I couldn’t lift or hold my baby,” Pinnock revealed.

When God opened a door for her husband to receive treatment abroad, Pinnock took the opportunity to accompany him and seek treatment for her lupus. Wheelchair-bound, the duo travelled together. “We had to leave our babies with family. It was the hardest thing to do but, with the grace of God and amazing support from family and friends, we made it through. We were both diagnosed in July of 2012. And, after a successful course of treatment, he was declared cancer-free in January of 2013.”

In March of 2013, the couple returned to Jamaica. And Pinnock continued to live with lupus. “This has been a rollercoaster ride. I’ve been in and out of the hospital – I can’t even tell you how many times – for various things, like skin infections, bronchitis and dengue. Between 2015 and 2023, I probably was admitted over 30 times. My longest hospital admission was for about six weeks.”

FLATLINED

She recalled one incident that always stood out from the others, “There was one hospital admission where I actually flatlined while in the accident and emergency area. They had to resuscitate me. That’s the nature of lupus. It can affect every single organ in your body.”

During that period, she lost function in her lower body and couldn’t walk. Determined, Pinnock committed to physiotherapy and eventually learned how to stand and walk again.

Dealing with this illness was debilitating enough. But she battled depression too. “It was a very rough time, but I believe I received deliverance from the Lord. There’s the pain, the doom and gloom. But this is not the end of my story. I flatlined and I’m still here. I understand that God has a purpose for me. And this part of my journey, as unpleasant as it is, is a part of His purpose. He’s going to always have my back. And I have people dependent on me: two children who need me,” she said.

Watching from the sidelines hasn’t been easy. She remains optimistic and finds creative ways to bond with them. “This illness has forced me to be creative and resourceful. I remember when they were much younger and I was bedridden. You know, we used to do homework right there in my bed. We used to do movie nights right there in my bed. You learn to live the best life with what you have.”

REMISSION

Since entering remission, the family has enjoyed movie and game nights, along with trips to the river and beach. Pinnock insists on these outings, and her family always ends up loving them.

Her husband, she says, has been carrying a burden that no one else understands. “Having to explain to the children time after time why Mommy is not there could not have been easy. We’ve always had a genuine friendship, so we try to keep our communication going.”

On a personal note, she celebrates victories like the ability to be mobile again, “At the beginning of the pandemic, I was able to start driving again. Being able to be mobile and not having to depend on people has been very liberating.”

And she has participated in several speaking engagements where she is able to tell her story, imparting hope and sharing the goodness of God in the middle of struggles. “Once you’ve been diagnosed, you should be having regular check-ups with a rheumatologist. But, also, to just know that it’s not a journey that has to be done alone.”

krysta.anderson@gleanerjm.com