Celebrations With Sarcoidosis Are Different, but Still Important

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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Happy New Year!

By now, we’ve all hopefully recovered from the holidays and are starting to get into the groove of 2022, hoping and planning for a better year.

The recovery may be a little easier this year, as celebrations have looked different since COVID-19 took over the world. We’ve been unable to have the big family gatherings that so many have cherished in the past, and many holiday parties were either canceled or significantly toned down this year due to the omicron variant. We’ve stayed home to stay safe, spending time with loved ones via video calls.

For those of us living with sarcoidosis, our holidays (and all of our days) started looking different long before COVID-19 came into our lives. Many of us have to stay away from large gatherings because our compromised immune systems make us more susceptible to other illnesses and increase our risk of severe outcomes. Even when we take precautions and make plans to attend, unpredictable symptoms can force us to cancel at the last minute. This can make us feel more isolated, lonely, and depressed.

For many of us, it’s especially difficult to not only feel left behind, but also to log on to social media and see everyone’s holiday photos. We’re often happy for them, really, but it can also reinforce what we’re missing.

It can be easy for that negativity to take hold and overwhelm us. We may feel like we’re letting people down by not attending, but think they may be better off without us when we see that they’re still having a good time.

Those of us with sarcoidosis must remind ourselves that we deserve to celebrate, too. We just have to figure out a way that works for us.

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I used to go with my husband and mom to my sister-in-law’s house on Christmas Day. Since I got sick, though, I’ve had to cancel more times than I can remember. Fortunately, we can always partake in our Christmas Eve tradition, whether we’re on a plane home from Hawaii, or I’m too sick to get off the couch. We just enjoyed our 25th year of ordering Japanese takeout, watching “It’s a Wonderful Life,” and opening stocking stuffers at midnight, because, as I always explain with this tradition, “it is a wonderful life.”

Our New Year’s Eve tradition is even easier. My husband and I are not into the New York City party scene, so we simply focus on what matters: the midnight kiss. I’m not ashamed to admit that we often go to bed early and set an alarm for five minutes to midnight. That still counts! As Squire Bill Widener of Virginia said, “Do what you can, with what you’ve got, where you are.”

The key is to think about what part of the celebration means the most, and find a way to focus on that within our own realm of possibilities.

celebrations with sarcoidosis | Sarcoidosis News | Collage of photos showing celebrations at the hospital. Photos show birthday decorations, Kerry and her mom with birthday tiaras, gifts, and a card.

2021 birthday celebrations at the infusion center, featuring Kerry’s mom, Iris Kahn, second from left, and Kerry, second from right. (Photos by Kerry Wong)

My mom turned 70 last summer, which was a significant milestone. All I could think about was the surprise party we’d coordinated for my grandmother’s 70th birthday. There were so many people there, which really made Gram feel special (as she should — she was a phenomenal woman).

I wanted to do the same for my mom, but given the pandemic, I couldn’t throw a party. I couldn’t even take her out for dinner because I had my intravenous immunoglobulin infusion that day, and I’m usually beat for the next day or two. I invited her to have lunch with me at the hospital and turned it into a surprise party. I decorated my cubicle with every “70” item that Party City carried, and brought a crown and sash for my mom to wear. She cried when she saw it all, so I knew I had accomplished my mission.

My own birthday was just before Christmas. It fell on the day after my infusion, so I couldn’t plan for anything but rest. I decided that for my “pre-birthday,” I wanted to celebrate the nurses and staff who take such good care of me week after week. I brought gifts for all of them, but was completely surprised when they gathered at my cubicle to sing “Happy Birthday.” They’d even signed a butterfly birthday card for me. My mom came by with lunch, and brought a birthday tiara and a cake with a battery-operated candle. It all made the day especially memorable.

There is always something worthy of celebrating, whether it’s a special day on the calendar, a special person in our lives, a special milestone we’ve achieved, or simply getting out of bed. (Given the fatigue those of us with sarcoidosis experience, sometimes that last one is a major accomplishment.)

Let’s take our cue from Kool & The Gang, and “celebrate good times, come on!”

***

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

stephen fiege avatar

stephen fiege

Hi, How has ivig worked for you? It took me 14 years to get it approved and then it was right when the pandemic started and know one would do it in house. Now I am to sick with my heart failing to do it.

Reply
🦋 Kerry Wong avatar

🦋 Kerry Wong

Oh Stephen, I'm so sorry you've been unable to get it, and even more sorry that you're not doing well without. I've heard of a few people getting infusions at home, but I spend the day in the hospital for my infusion every week. When the pandemic started, it became the only place I went (though it was scary, especially since the first case in NY that led to the hot spot/containment zone here was at that hospital) ... about 6-9 months in I started getting back to my other doctors, because I couldn't hold out any longer. But it's been really good for me, for the most part. After spending so many years with dismissive doctors, misdiagnoses, and failed treatments, my family and I are just very grateful. I hope your team is able to come up with something else to help you. Sending hope your way.
~🦋

Reply
wendy a schleyer avatar

wendy a schleyer

I wish I was as younge as you Kerry. Thank you for all you do

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Aww, aren't you sweet, Wendy! We're all in this together!
~🦋

Reply
Susan Owens-Delucchi avatar

Susan Owens-Delucchi

Thank you for the reminder about celebrating what we can in spite of all the limitations due to the pandemic. I haven't seen my grandkids for 2 1/2 years as I'd have to do a 5 hour plane flight. Yet, I'm doing some creative ways to celebrate little things with them such as to make personalized books for them. And FaceTime helps me find connection, but the little one is 4. So I'm a little, flat, moving image on a phone to him. I do need to continue to find little and big things to celebrate. From playing with my cats to gazing at rainbows or lizards sunning themselves on my patio or birds looking for insects in the lawn or time with my younger son who has remained at home after college graduation due to the pandemic. There are still so many little things that I can appreciate in spite of my neurosarcoid (diagnosed 2009) especially since pandemic isolation. And thank you for reminding me to appreciate the beautiful team of nurses at the hospital center where I get my remicade infusion. They are so gentle as they locate where to put the needle which has gotten harder through the years. I need to do more for them! Much appreciation for sharing such a beautiful article.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Aww, Susan, it must be so hard to go so long without seeing your grandkids, but I'm so glad to see how much good you are finding in your life, despite being shut down by the pandemic. I love your list of little things, and always find that once we start to make a list like that, we come up with more and more things, and they're not always so little!
~🦋

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