LIVING WITH LUPUS | Shelley N.

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One week before the pandemic began in 2020, I was diagnosed with lupus.

The story started when I woke up one morning to swollen and sore fingers.

At the time of my diagnosis, I was a stay at home mother of two little children. Waking with swollen joints was something I – like many pregnant women – had become used to, except that I wasn’t pregnant and I could hardly dress my then two year old because of the pain.

I had experienced this symptom before, but had unfortunately always received an answer from my previous doctor that went something like, “You must have slept on your hand funny.” “Drink more water.” “Perhaps you have sprained your hand but didn’t notice?”

These remarks often made me think that if I had slept so poorly on my hand that it was now causing me this much pain and swelling, surely I would have woken up. It’s true that I need to drink more water! But also, how many people sprain their fingers without noticing?

This time, I was lucky to have a new and wonderful doctor who sent me in to get blood work done right away, that day. She explained to me that the symptom being present was important for some diagnoses.

Going to last minute appointments with two little children in tow is easier said than done, but we went, I got tested and I waited.

A week later I had a follow-up appointment during which my doctor told me that it had come back positive for lupus. However, no one in my family has lupus so she suggested more tests and an appointment with a Rheumatologist to see if it could be anything else.

After more tests and a long conversation with the Rheumatologist, we had an answer.

I had lupus.

Initially, I was in a very real denial and kept thinking that I would soon receive a call from my doctor that it was a mistake, or that the test got mixed up with someone else’s, or that they’d call and laugh out a “just kidding!” or something else along those lines.

In order to process the news, I did research, lots of research. I thought that maybe if I learned all that I felt I could about lupus that it would become easier to come to terms with having it.

I tried to research all angles of it – the bad, the good, other peoples’ experiences, treatments, symptoms, studies – and it did help, a lot!

One thing that stood out to me as I learned more about it was that a lot of the symptoms were things that had been ailing me since I was quite young; low energy, rashes and joint pain being the most prevalent. There was also an awful and unexplainable bout of pancreatitis I had at age 6.

It was relieving to finally have an answer.

Pain had become a regular part of my life since my later teen years and I had tried various ways to help reduce it. Eating healthy, cooking my own food and taking care of my body was one of the main ways I had learned to combat it.

So when I learned that things such as stress management and reducing my intake of inflammatory foods could help lupus, I felt really encouraged because I had already begun to incorporate that into my life quite a few years prior.

I realized that lupus – before and after I had been made aware of it – had made a positive impact on my life without my realizing it.

As I thought about my future, or on days I was feeling particularly sore and exhausted, I tried my best to focus on this.

It was easy to sink into anxiety (something I also struggle with very much) and despair about what my health might look like in the future, but I had to remind myself that worrying would only elevate symptoms.

Learning about my lupus was hard and having to live with pain and low energy while also chasing little people all day is really hard.

But figuring out how to best take care of my body, being able to connect with a community, knowing why I have the issues that I do instead of worrying about the unknown – all of these things have made a lasting positive impact on my life and I am grateful for them!

In 2021, I was excited to be pregnant again but was now a “high risk” pregnancy. I dreamed of birthing in the comfort of our home but I was told it was an unlikely possibility.

After many tests, many ultrasounds, many encouraging conversations with my wonderful midwives, and a long exhausting pregnancy, my dream came true. Our third child was born in our home and everything was fine. I was sore and so tired and would continue to be for a long time, but I did it!

It was a huge moment of encouragement and celebration for me. I live with a lot of pain, but I will not let it take my joy.

Lupus scares me, but I will face whatever comes with as much courage as I can muster. I will always choose to be a warrior instead of a victim, even when it’s really hard. I have lupus. But I can do great things.

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