“I’m Always Fighting for More Tomorrows” – Jordyn’s Vasculitis Story

Describe yourself in a few sentences. 

I feel like I’m kind of a person split into my life before GPA and after. Before GPA, I was an avid traveler and I was super involved in the animal welfare community. I was an animal cruelty investigator and I loved that part of my life. After GPA, I had to pull back on the travel and put a pause on my animal welfare work. I now enjoy a much quieter life with my husband, two dogs, a hairless guinea pig, and a large collection of plants. I enjoy gardening, Star Wars, Lord of the Rings, and being outside. I got married to my husband Cody in September 2021 and I was diagnosed with GPA in March 2022.

You were diagnosed shortly after you got married. How did you react to the diagnosis? Did it change the way you envisioned your life together with your husband? 

I started having symptoms of GPA about a month after my wedding. It started with mild joint pain and over the course of about 6 months, I found myself in the hospital on death’s door. The first time I heard about GPA was in a hospital emergency room reading a CT result. My lungs were full of bleeding nodules. The radiologist wrote “Possibly Wegener’s Granulomatosis or a malignant process.” The prospect of possibly having lung cancer was horrifying, so I guess getting the diagnosis of “not cancer” was somewhat of a relief. It felt good to be getting answers after being so sick for so long. At the same time, all it took was a couple Google searches for the fear to set in. GPA is a scary disease and Google doesn’t help! But, at the time, I was just grateful to finally be getting some help. 

In regards to my life with myself and Cody, things got really hard really quick. Cody will say that he had a moment in the hospital where he wanted to run but he remembered his vows and everything we had been through and he chose to stay. This has definitely changed how we imagined our lives. We wanted children and we wanted to travel. I had a career and dreams for the future. But instead, here I am disabled at 30, physically unable to travel, and sometimes I need help getting dressed. Cody has been my rock through all of this, but we have definitely had to adjust to the “new normal.” Some days are really hard. We are both in therapy and we work really hard to be intentional with each other in our love and communication. It was hard navigating major changes in my body like steroid weight gain and significant hair loss as a newlywed. You don’t think that will be your honeymoon phase! It really taught me a lot about the strength of Cody’s character and how amazing this person I married is. Somehow he stayed and continues to stay through all this mess. Cody has held my hand through some of the worst moments of my life. He is and will always be my home! 

You’ve told me that your husband is your safe space (so beautiful!). Describe him and your relationship. 

Cody and I first met in college at the University of Arizona in 2011. From my first date with Cody, it was like things just clicked. He was easy to spend hours with and it never seemed like enough. I mean, we’ve been together almost six years now and it still doesn’t seem like enough. He is my absolute favorite person to spend time with. When he walks into a room, it’s like my body relaxes. Cody is the type of person who stays, even when things get tough. He holds on tight and doesn’t let go. He is loyal and kind and gentle. In November, I developed a septic infection and was truly in danger of dying. When my fingers turned black and my lips turned blue and I could barely stay awake, he was there, holding my hand and not letting go. He didn’t run away, even though things were so so hard. He fights for the people he loves, and I so admire that about him. It might sound sappy, but he really is my most precious gift. 

Cody will say he has “GPA by proxy.” What does that mean to you both? 

Cody often talks about his fatigue as a caregiver. I hate that our relationship has this dynamic at times. GPA has affected him just as much as it has affected me, just in different ways. He very regularly has to carry the burden of my uncertain future. When he leaves to go to work, he worries about me falling or having a medical incident, especially right now when I’m in such a bad flare. On my bad days, he has to pick up the slack with household chores or errands. When I’m in the hospital, he has to manage things on his own. The dynamic of our relationship is at times ruled by GPA. He feels that strain just as much as me because we are a team. We aren’t always perfect. We have definitely learned some lessons along the way about communication and being vulnerable with each other. We have learned to put a priority on our mental health and make sure we are investing in ourselves. It’s easy to fall into that trap of “I have to be strong for the other person,” especially as a caregiver. And as the sick person, it’s easy to get caught up in the pain and forget that this is horrible for the other person too. It’s a team effort and we have to look out for each other and be sensitive to what the other one needs, especially on the really bad days. 

I know you’ve struggled with hospitalizations. On your hardest days, what keeps you going? 

The past seven months of my life have been extremely difficult. I’ve been in and out of flare, and I also was diagnosed with an immunoglobulin deficiency, which puts me at extreme risk of severe infections. In the past 7 months, I have been to the ER roughly 10 times and I have been hospitalized 4 times, the longest of which was an 8 day hospitalization. I think the biggest thing that keeps me going is remembering my why. I try to remember the people I love and how I want to stay around for them. I’m always fighting for time, for more tomorrows with those that I love most. I also think about my doggies and how sad they would be without me there! As long as I’m still breathing, there is hope for a better tomorrow. 

What gives you hope / what do you look forward to in your future? 

My hope is that one day I will be healthy enough for my husband and I to adopt a child. I look forward to being more stable so I can travel again. I want to go to Disneyland and go whale watching and meet a harbor seal. I want to take my husband to Ireland because that’s his dream. I want to get to a place where I can help animals again. There is so much to look forward to! Also, all of the research that is going on right now gives me hope. I am always trying to educate medical professionals on my disease, in the hopes that they will be able to recognize it in the future and help someone else. The fact that there is so much activity in vasculitis research gives me hope that someday, others might not have to suffer like I have. 

How has being part of the Vasculitis Foundation’s in-person Arizona support group impacted your journey? 

The AZ support group has made me feel so much less alone. For me, the vasculitis diagnosis was extremely lonely. I was so scared and it felt like no one understood what was happening to my body. Meeting the people in the support group gave me this community of people who understood. When I am falling apart, they are who I go to. These people have visited me in the hospital and gone to my house when I was too sick to leave. It’s a village of people just like me and we hold each other up through the hard stuff. 

Is there anything else you’d like to share? 

Honestly, I’m just so grateful. GPA has pushed me to my limits more times than I can count, but through my diagnosis, I have gained so much. I have a community of people surrounding me who love me just the way I am, even with all the steroid weight gain and stretch marks. I have the gift of perspective. I have learned what is really important and I have let all the extra stuff fall away. For once in my life, I am living the most authentic version of me, and I am surrounded by people who like me for me. My relationships are deeper and my conversations are substantial because I know I am on borrowed time. There is so much pain in my body and at the same time, I have so much peace in my soul. It’s not all roses and some days are so awful and painful, but I am surrounded by beautiful people and not everyone is that lucky. It’s such a gift!