Weathering the storm: A bad day is made worse with sarcoidosis
How living with sarcoidosis makes daily struggles even more complicated
Have you ever had one of those days?
You know, the kind where nothing seems to go right, where a dozen things have gone wrong before you’ve even left the house?
OK, technically, I did leave my apartment, and came back, and left again, and came back again. And that was only part of the problem.
It was my weekly infusion day, and I was heading to the hospital. As I got into my car and pulled the door shut, I heard a crunch as it bounced back out. I initially thought it was my Auto Cane, an assistive device that offers support and leverage as I get in and out of the car. I’ve absent-mindedly closed the door on it more times than I’d care to admit (thanks, brain fog!), but this didn’t quite sound the same.
As I pushed the door open, I looked down and saw my phone. In a level of physical coordination that I never could’ve achieved if I tried, my phone had apparently fallen out of my pocket at the exact moment that the door was closing. Crunch!
Kerry’s cellphone after being crunched in her car door. (Photo by Kerry Wong)
I rushed back upstairs, breathless and sweating, hoping I had an old phone I could reactivate. I found one, but it wouldn’t connect right away. I used my husband’s phone to let the infusion center know I’d be late while I kept trying to activate the old phone. I couldn’t wait long, though; my intravenous immunoglobulin (IVIG) treatment takes about eight hours, and I didn’t want to keep the nurses there too late.
I left again, hoping I’d remember how to get to the hospital without GPS to guide me. I hadn’t gotten far when I hit the first roadblock: It was raining so hard that the street was flooded. I turned to go another way, and soon enough reached another road closure. Within seconds, two firetrucks passed, heading toward other flooded roads and downed trees. I took that as a sign to go back home.
Without a phone, I had to find another way to let them know I wasn’t going to make it in for my infusion. I couldn’t reschedule for another day because I have other medical appointments nearly every day, so I just had to miss my sarcoidosis treatment. Again.
Life is more complicated with chronic illness
It feels like that’s been happening a lot lately. Not the “crunching-my-phone-in-the-door-then-getting-sidelined-in-a-storm” part, but I’ve been missing my treatments far more often than I’d like.
I’ve had to forego my infusion three of the past six weeks, either because I wasn’t well enough to get there or because the weather kept me from it. Not too long ago, I had to miss it for a few weeks around my hip replacement surgery. Before that, I had to skip it after I broke my foot, then when I was exposed to COVID-19, and again when I tested positive.
Without getting IVIG weekly as ordered, I’m not getting the full benefit of the medication. That’s probably why I’ve had so much more pain and fatigue lately, and why my physical therapy seems to have gotten harder. This kind of thing can easily spiral into a self-perpetuating cycle, where a missed treatment leads to feeling worse, which leads to missing more treatments, and so on.
I’ve often told my husband that I miss being low-maintenance. Before I was sick, I could decide that I wanted to do something and just do it. I could jump in the car (or better yet, go for a walk!) and meet a friend for coffee. I could go to the movies, or a Yankees game, or bowling on a moment’s notice.
Now, I have to think about the physical exertion, the weather, the accessibility, which medications I’ll have to take in advance, what assistive devices I’ll have to bring with me, how much I’ll have to rest and what I’ll have to miss to prepare for the activity, and how much I’ll suffer afterward.
It’s the same when it comes to something as simple as the rain. A storm can be anything from a minor inconvenience to a dangerous situation for anyone, but there are extra considerations for people with chronic illnesses like sarcoidosis.
We may not have a hand free to hold an umbrella because we’re using a mobility aid. Our scooters are not designed to operate through heavy rain or floods. Inflammatory arthritis pain often increases with weather changes. And when a storm prevents us from getting our necessary medical treatments, it can have severe consequences.
Kerry’s husband, Michael, tries to keep her scooter dry during a flood in Venice, Italy, in 2018. (Photo by Kerry Wong)
Still, I tend to look for every cloud’s silver lining — in this case, literally.
“So never mind the darkness, we still can find a way/ ‘Cause nothin’ lasts forever, even cold [September] rain.” — Guns N’ Roses, “November Rain”
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.
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Comments
Pegah
i just read your story. it was great and very well written! i liked the way you described the complications of a chronic story. your story was not sad at all, while it was about describing something sad. wish the best for you Kerry.
🦋 Kerry Wong
Thank you, Pegah. That's always what I'm hoping to show - that even as we have dark experiences, we can still find the light ... eventually!
~🦋
stephen fiege
This has been happening to me for 15 years straight now. Since i got really sick. I am 64 now and don’t even go out much any more because it is not worth all the stress to do just the simplest chore. I drove to the store which is a 64 mile round trip to get my pain meds the other day. Thank you government for making it impossible to get them by mail.The day was really bright with the sun which is very bad for me. I wore two masks and by the time I got home my upper lip had swelled really badly. The next day it blistered then peeled. Then it was fine on the third day. So I get your problems. I wait for just the right day to do things based on my health mood and the sun. What a life. I tell myself and my wife the other choice is death. I still think life is a better choice. But there is not a day that goes by that i wish I had my health back so the simple things were still simple.
Francis Thompson
Stephen: It is hard to imagine how you can muster enough strength to face the ridiculous amount of challenges posed by sarcoidosis on a daily basis. One of the things that helps me deal with it are my family and friends. At my lowest point in this battle, I wanted to give up; every morning I was disappointed that I woke up. This depression lasted about 26 months for me. Then I realized that I was scaring my children. I had become obsessed with what I could not do and under valued what I could do. Life is a better choice. I chose to burry my memory of the old healthy me. He is gone and will never return. I have embraced the present me and he is a worthwhile and good person. I chose to live, grow and love. It sounds like you have also come to this realization. Once I stopped dwelling on the past, this sickness lost its battle for my soul. Sarcoidosis can ravage my body; however it cannot kill my spirit. I wish you comfort and the strength to deal with this affliction.
🦋 Kerry Wong
I totally get what you're saying, Stephen. Some days, it really feels like you just can't win, and it can be frustrating having to wait for the rare good (or not as bad) moment to do all the things you couldn't do on the others. But you are also right that life is the better choice. And hopefully your wife, like my husband, makes even the bad days more liveable. Wishing you more "not as bad" days!
~🦋
Francis Thompson
My heart goes out to you. Nothing is easy when you live with sarcoidosis. I am still able to do some things; however, every task requires planning and a delay for the spirit to move me. The memories of freely just getting up to do anything are still there, but fading. I feel like a klutz most of the time. My hands shake and I cannot feel my feet. But I still push on and realize that I can't do anything quickly. However, I enjoy a great laugh at how pathetic I have become. If you can't laugh at yourself; life with sarcoidosis would be unbearable. Keep up the fight and don't miss out on some really great humor. I am laughing with you, not at you. I love your posts.
🦋 Kerry Wong
I so agree with you, Francis! Though I wouldn't say you're pathetic, it is a blessing to be able to laugh at ourselves -- and with each other! I've often said that laughter is my coping mechanism ... so I don't cry, scream, or hurt someone! I do still occasionally cry or scream, but I laugh more than either of those. Glad to have you laugh along with me.
~🦋
Ann Centers
Hi Kerry, I did rather enjoy your story and of course it resonates with so many that are diagnosed with sarcoid. My diagnosis came back in 2016. I am just now accepting that this is real, and I am wanting to change the way I do things by not living in isolation in broad daylight and start by meeting others that are dealing with the day-to-day sarcoid challenges. I did try looking at other websites, but their content was morbid and yours was about life. Although I am not new to the sarcoid diagnosis, I am new to joining a movement that informs and hopefully encourages those that are living with sarcoid. Thank you again Kerry!
🦋 Kerry Wong
Oh Ann, welcome to the positive side! There is a wonderful, warm, and supportive sarcoidosis community out here. Sure, we do have hard times. but even those are a little easier to get through when you don't have to do it alone.
~🦋
Jacinta
Sometimes it is comforting to hear that I’m not alone with my trying daily struggles.
I probably haven’t got Sarcoidosis as bad as many, i still work full time in a very physical job but I’m burnt out most days.
I was diagnosed with Pulmonary Sarcoidosis in 2021. I know I have changed since finding out I have this and try very hard not to get down about it as life is too short.
Peace and all the very best of luck to you all
Jacinta
🦋 Kerry Wong
You're definitely not alone, Jacinta! There's no need to compare with anyone else - however it affects you and whatever you're still able to do, you are entitled to feel what you feel. And that burnt out feeling can rob us of so much of life, especially when spending all the energy we do have on work. While it is ok to not feel ok sometimes, it is important to find the things that help lift us up out of that funk ... and connecting with others in the sarcoidosis community is surely a great way to do that. I'm glad you found us here.
~🦋