Lupus Awareness Month | Pennsylvania Delaware Valley

I was diagnosed with Lupus when I celebrated my 22nd birthday. I was an invalid for almost 8 months. My body wouldn’t retain anything but Pedialyte. I had to roll on the floor to crawl to the bathroom. I had no strength or ability to stand on my own. I was miserable in a room for months with barely no visitors. My family and I had no idea what lupus was. But no one talked about it, because no one knew anything about it.

Once I changed rheumatologists, I was put on steroids, Methotrexate and Plaquenil, which allowed me to resume working and living a pretty normal life. I got married, had one daughter and experienced early menopause because of lupus, and lost the ability to have any other children. As I climbed the corporate ladder, I excelled in my career and decided to finish college. The month after I received my Bachelor’s Degree, I was terminated from my job because I’d used all of my FMLA time. This was a huge pill to swallow and my life has never been the same and I struggle daily with new diagnoses, side effects and symptoms from the medications I’m on. I sometimes feel like a walking pharmacy. But I will continue to fight and advocate for a cure!

20 years ago, I started losing the use of my hands.

I went to the hospital for a gynecological surgery and left with a weird sensation in my hands. Shortly after, I booked my first visit with a rheumatologist, a type of doctor I never knew existed, and was given a diagnosis of rheumatoid arthritis.

About five years later, a nurse explained on the phone to me that my bloodwork showed signs of lupus. Lupus?!, I remembered thinking, shocked that I was essentially given a lupus diagnosis over the phone. Through this frustrating journey, I’ve had to go on disability from a job I loved, struggled to explain lupus to my friends and family, and learned more than I ever wanted to about trusting my gut. I’ve spent years wondering if anything would be different had I known about my lupus diagnosis earlier and driven myself crazy with the “what-ifs” of my life. But what I’ve found in myself is great strength that has only grown. Because of this strength in myself, I know that people with lupus don’t owe anyone an explanation and shouldn’t feel ashamed of this disease.

As I reflect, a few things have served me well over the years:

• Going to therapy. The biggest help in my 20+ years with chronic illness has been therapy It gives me permission in allowing myself grace: in cancelling plans due to illness, finding the right doctor, and speaking out about my Major Depressive Disorder (MDD) and anxiety. My therapist was not easy to find- it takes a lot of mental fortitude to find a therapist and I wouldn’t give up until I found the right one. I also have a gratitude journal that I’ve used for the past 7 years, and I don’t allow myself to go to bed until I write down 5 things I’m grateful for. Really: I won’t allow my head to hit the pillow until I journal!

• Through trial and error, learning how to self-advocate. Speaking up with your doctors is a good way to form a solid relationship with them. I feel more empowered in advocating for myself and asking questions when I know my doctors respect me just as I respect them. 18 years ago, I was prescribed OxyContin for the chronic pain I was enduring. I had no idea of the serious dangers associated with this medication that we now have. However, I was very blessed because my sister, an RN, told me to stop taking it. At first, I was defensive because I was truly suffering. However, I followed her advice and looking back, I was grateful to have the intervention. Doctors are human beings too, so don't be afraid to get other trusted opinions. Education is key with autoimmune diseases such as lupus and the various treatment options. What works for one person may not be effective for another. Patience and persistence are crucial to the journey.

• Finding community. In late 2019, I made a promise to myself to reach out to the Lupus Foundation and finally get involved. The timing clearly wasn’t great as the pandemic has stopped in-person events, but I’m still so happy with what I’ve learned and who I’ve met over the past year. I’m a perfect example of someone who recently got involved and finds so much benefit to this organization. I could kick myself for suffering in silence and not connecting with the lupus community sooner!

Lupus Awareness Month is meaningful to me because the word about lupus needs to be out there. I have my own personal experiences of trying to educate family and friends, and it’s hard when you’re just one person. So, while I’m normally all about learning from others, today I’m sharing my own story with you to honor World Lupus Day.

I was only 8 years old when I learned about the burden of lupus. Most people are diagnosed with lupus when they are adults, yet I ended elementary school with 7 rounds of chemotherapy, seemingly endless blood tests, and hospital visits.

Usually, 8-year-old children are full of energy, so my parents were concerned when I started napping at 5 pm. That fatigue, along with a fever, bruises, and red spots, led me to the Children’s Hospital of Philadelphia (CHOP). I ended up meeting a CHOP rheumatologist who confirmed lupus nephritis and started me on an aggressive course of treatment.

Throughout 3rd grade, I lost my hair from chemo, gained weight from the Prednisone, and dealt with a huge adjustment in my life. Kids in my own class didn’t even recognize me. Despite my monthly chemo treatments, I was still able to pursue ballet and soccer, while learning to take it easy when I needed to.

During this uncertain and frightening time, I’ll never forget a special gift given to me right before my chemo: a decorated pillbox. It was given to me by someone who also has lupus nephritis. The pink and silver jewels and purple butterfly rhinestones that lined the pillbox brought me a sense of happiness and warmth for the first time since my diagnosis. I had never seen anything like this before and was overwhelmed with a sense of appreciation. This gift of kindness inspired me to help other patients who endure daily medication.

Today, at the age of 17, I am celebrating 8 years of remission from lupus nephritis and am unconditionally grateful to my doctors. I know how lucky I am to be in remission, so I decided to start a club at school called Pillboxes for Patients. We decorate pillboxes for the kids at CHOP in order to create the same joy I received from my first pillbox, and hopefully make the bitterness and loneliness of daily medication a little less painful.

Lupus changed me when I was so young, working through an illness no person, much less an 8-year-old, should have to go through. Lupus has allowed me to develop empathy and has inspired me to drive change. Although I am in remission, I will continue to create awareness of this awful disease, and to give back to the lupus community in any way I can.

This is the story of how life is played out in the mind of Venetia Thompson.

Who are we? It’s hard to tell. When days are measured by pain, trips to the emergency room, or having to constantly decline events with family and friends, it’s hard not to be defined by our disease. We painfully watch our mind and body battling over who is going to be in control. 

The mind says, “Today I'm going to start my day with a workout, get some wash done, plant my new summer bulbs, finish my current art order and then prepare a great spaghetti dinner with a hardy salad.

“Sounds reasonable”, says the body. Hence, you proceed with your day. Your workout is complete, make yourself a protein shake, and put a load of clothes in the washer. So far, so good. But upon taking a shower you notice that you begin to slow down. Your body says, “I think the schedule for today was more ambitious than what can be handled; I’m getting tired.” 

“Tired, the mind says, you’ve barely started the day! Okay, why don’t you sit down for about fifteen minutes and then let’s carry on with the rest of the day”.

Okay. After a fifteen-minute rest, you grab your straw hat and head out to get planting done. Your body struggles through each movement like you are working through a pool filled with Jello.

Your mind says, “Hey body, what’s wrong with you? You are dragging around the yard and taking forever!”

“I don’t know. I just can’t get myself to do what you keep trying to get me to do. I told you I was tired earlier, and you wouldn’t listen”. 

The mind, getting frustrated says, “This is totally unacceptable. You can’t stop yet; There is too much day left to do.”

The body, feeling useless, says, “I’ll finish planting the last of these bulbs and see how I feel after that.” Your joints and muscles ache to the point you can barely stand it. You’ve taken all prescribed medications for the day so you reach for maximum strength Tylenol, pop two, and sit for twenty minutes with hopes they will kick in quickly. “Just give me another minute the body pleads with the mind. I know you want to finish the art order because it’s on deadline, but I just don’t have the strength to get up”. 

“Oh, for goodness sakes,” says the mind, “You are absolutely embarrassing! How did I get stuck with you? Are you going to make me look bad, again? Our plans for the day were not unreasonable.”

The body agrees, “You are correct in stating the plans for the day were not unreasonable, but my energy is depleted, and my body pain is off the charts!”

I’m just going to have to find a couch and lay down for the rest of the day and my order is going to have to wait”.

Day comes to a close earlier than desired. The mind versus the body is over for this day with the mind having to accept the body’s limitations for the day’s agenda. Tomorrow, the mind will do more negotiating with the body to see how they can reach accomplishing getting everything done without so much pain. Will it be challenging? Yes, but doable!