The last two weeks have been extremely challenging. Living the scleroderma lifestyle means I never know what is around the next corner. Waking up brings a daily surprise, sometimes good, and other times not so pleasant. I have learned to go with whatever the disease presents me with each morning.
However, no matter how adaptable I think I am, kidney infections seem to sneak up on me. They arrive unannounced and become acute very quickly. They have sparked late-night visits to emergency doctors resulting in IV antibiotics and fluids. The discomfort is terrible, leaving me feeling unwell for days afterward.
I felt one coming on suddenly a fortnight ago; the signs were obvious about 60 minutes before its onset. In addition to the dread I felt, I knew that in six days, I would fly to Wellington to attend the Scleroderma NZ National Seminar 2019. I needed to be treated with antibiotics as soon as possible if I were to have a chance of attending.
While sitting in the emergency room at 4 a.m., with IV fluids and antibiotics running through a drip, I considered whether traveling the following week would be worth it. I have learned over the years that pushing myself when I am unwell is unhelpful and can cause a delay in my healing.
Deciding to go was tricky, but in the end, my husband, Max, and I chose to make the trip. We knew this was somewhat risky, as a day or two later, I still had symptoms, although the intravenous antibiotics gave me hope. The treatment resulted in a swifter resolution of my most distressing symptoms and a slight improvement in how I felt. But I wondered if it would be enough?
We set out with trepidation, my suitcase laden with all manner of prescription medications just in case — and a hope that all of the action wouldn’t exacerbate my symptoms.
I had a strange feeling that I was making a mistake and knew that if I consulted with my doctors they would likely have advised me to rest at home. As we flew out of Christchurch, I worried that this trip was not what the doctor ordered!
After an early night, Max and I set out to the conference the next morning. As we made our way into the seminar room, I was hit with a massive wave of friendliness and welcoming smiles. I experienced an innate feeling of belonging. I was with “my people.”
We learned a lot from the speakers and came away feeling empowered. I felt unwell at times but managed OK. However, something happened that I hadn’t expected. That feeling of belonging while in the presence of “my people” gave me a superpower that changed something for me.
It is difficult to explain precisely what shifted, but the change was one of healing and it was helpful. Gathering with other scleroderma warriors in one room offered a sense of belonging and a powerful feeling of kinship. This experience held me together inside because I knew that I was surrounded by others who fully understood my daily experience of living with scleroderma.
Thank you to all of the New Zealand scleroderma warriors who came to the weekend and love to those who couldn’t make it. Whether we talked or not, your presence was part of something bigger for me, and I am eternally grateful. I am so happy I made it to the weekend — as it turns out, it was just what the doctor ordered!
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