A novel idea to make IVIG infusions and hospital stays better

Columnist Kerry Wong has created her own personalized café for infusion days

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

Share this article:

Share article via email
banner image for

Early on in my chronic illness journey, before I knew I had sarcoidosis, I was struggling. I desperately sought answers about what was happening to me, not only physically, but also in other ways, like what my life would look like moving forward, how much of it I’d lose, and how I could continue to live in a body and mind that felt so foreign to me.

I spent hours researching online about conditions that might be causing my symptoms, organizations that are dedicated to those diseases, and blogs written by people living with them. I needed ideas, inspiration, and even laughs. Most of all, I needed to hear from people living with chronic illness.

In a blog titled “Fashionably ill,” myasthenia gravis and mental health advocate Jessica Gimeno offered just what I was looking for. She wrote about ways to “vacationize” hospital visits, which caught my attention and has remained with me ever since. From dressing to packing a hospital bag to seeing the sights, Jessica found a way to laugh through what would make most others cry.

Recommended Reading
supermarkets, vegetarian, lyme, boredom, heroes, awareness, national minority month

Small Fiber Neuropathy Is Going Undiagnosed in Sarcoidosis

The vacations I took with my husband had always been special, but we had to cancel so many trips because I was sick. Even when we were able to travel, it was different from before. Since then, I’ve found new ways to make the most of trips. Still, I spend more days in the hospital than on vacation, so I had to find ways to get through those, too.

In January 2020, I started intravenous immunoglobulin (IVIG) therapy for sarcoidosis-associated small fiber neuropathy, which is how sarcoidosis affects my nervous system (a condition also known as neurosarcoidosis). That entails spending nine hours a day, four days a month, hooked up to a machine at the infusion center. Just two months after I began treatment, COVID-19 sent us all into lockdown, so those hospital trips were the only times I left my apartment.

When holidays came around, we celebrated at the hospital. I brought gifts for the nurses and other staff who always took good care of me, and my mom brought lunch when visitors were allowed. I even threw a surprise party in my cubicle for her 70th birthday!

As weeks turned into months and months into years, it became more important to find new and innovative ways to get through long days at the hospital. I started bringing my laptop to get some work done, used social media to keep up with friends and share my journey, and took naps to pass the time.

Vacation perks at the hospital

At the hospital, breakfast, lunch, and coffee are offered. I always want to bring my own, but I usually can’t wake up early enough to prepare it. So I pick from what they provide and stop at a drive-thru restaurant on my way home. As long as I’ve got coffee, I’m set for the day.

OK, it has to be good coffee. Lately, though, it hasn’t been.

As I was ordering my favorite coffee a few weeks ago (K-Cup pods for my home), I saw a new item listed: a travel French press. My mind immediately flew back to decades ago, when a co-worker and friend kept a French press in her office. When things were especially stressful, we’d go into her office, close the door, and enjoy a moment of serenity. It was indulgence, luxury, and escape. It revitalized us and helped us to conquer whatever awaited us in the remainder of the day.

Split-screen showing, from left, almond milk, a coffee press, and cup, and a photo of a woman standing with hands on hips in front of IV machine.

Kerry Wong brings supplies for her “Bad Ass” café during infusion days. It’s a way to “vacationize” her treatment. (Courtesy of Kerry Wong)

Inspired by Jessica’s words, I had an idea. This could be the perfect way to “vacationize” my infusion days!

I ordered the travel French press and some ground coffee to go with it and brought it on my next infusion day. Wearing my “Say aloha to your inner badass” tank top, I created my own personal café with Bad Ass Coffee of Hawaii‘s Hana Bliss Signature Blend, almond milk, and stevia.

After the nurses took my vitals, accessed my port, and started hydration, I closed my eyes, took a sip, and imagined that I was back in Maui, sitting on my balcony overlooking the famous banyan tree. As the name suggests, it was bliss.

When I opened my eyes, I was refreshed. The coffee company’s logo stared back at me, reminding me that I have the strength (and stubbornness) to stare sarcoidosis in the face and smile.

Perhaps the next time I’m feeling nostalgic for New Orleans, I’ll bring my Café du Monde coffee, swap my lei for Mardi Gras beads, and put on some jazz.

“After a while, just staying alive becomes a full-time job. No wonder we need a vacation.” — novelist Michael Zadoorian


Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

LINDA Webb avatar

LINDA Webb

Where can I find more information. I was just told i had sarcoidosis in the past moths. I am trying to gather some information. I do not have in my lungs. I do not know where to start or what doctor to go to.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

I'm sorry Linda - it can surely feel overwhelming when you first get the news and don't know where to turn. Sarcoidosis News (this site - see the menu above) is a great place to start. Beyond that, you can find specialized sarcoidosis centers at https://www.wasog.org/about/wasog-sarcoidosis-clinics.html, and a provider directory at https://www.stopsarcoidosis.org/provider-directory/. Beyond that, there are some really great patient groups and pages on social media. Hope that helps!
~🦋

Reply
stephen fiege avatar

stephen fiege

Hi Kerry, You have been on IVIG for about 4 years now. Have you found it has made a big difference in your nerve pain? After 15 years of asking for it they approved me in 2020 during covid. Most likely because of lack of people showing up and loss of revenue coming in. But I chose to not go due to wanting to stay healthy at the time. I couldn’t get it in house due to my mountain remote living. I have a chance to do it again but have a failing heart now thanks to a icd going off for no reason. I am thinking about it but it is risky with heart problems on top of nerve problems. Could give me a heart attack. I was just wondering if it helped that much with you? I like the quote at the end. My favorite quote is from the great Bernie mac. I am sick and tired of being sick and tired. Too bad a hospital killed him. That was a vacation he never came home from. I have to hope he is in a better place now because this disease is unrelenting on your body,mind and soul while you try to live with it. Hope you’re doing well. peace be with you.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

"Sick and tired of being sick and tired" - that is sarcoidosis life in a nutshell! I can certainly understand your hesitation, both at the height of COVID and now with the additional health problems. That's definitely a lot to think about and discuss with your doctors and others in your corner ... but it has been very helpful for me - I've had a substantial decrease in pain and some other issues. It still doesn't make me "all better," but the improvement is worth it for me. I hope that whatever you decide gives you peace of mind and symptom relief.
~🦋

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.