Sarcoidosis Doesn’t Stop You From Enjoying Simple Pleasures

Sarcoidosis Doesn’t Stop You From Enjoying Simple Pleasures
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Discipline is a trait that takes determination to mature into an art. By nature, we’re not disciplined creatures. This makes our life’s journey more eventful, especially living with sarcoidosis.

When I entered this fight, I didn’t know what I would be up against. However, I try not to let the obstacles I’m faced with get me down. I simply adjust.

The way I look at it, all of us living with various stages of sarcoidosis are still here for a reason. We have things to do, people to love, and stories to tell. Trust me, they become more interesting with each passing day. 

Last weekend was fairly uneventful for me, thank goodness. I did the usual things with my wife, chauffeuring her and her mother around to various stores in the area. I generally don’t mind when we visit one of the discount club stores, where I can ditch them and browse by myself.

I usually get a cart that can hold my small oxygen tank. Between my wife and her mother, it doesn’t make sense to get two separate carts — we barely fill one collectively. On this day, I used the store’s scooter offered to handicapped customers. This way, I can get what I want and not have to follow them around the store. It’s my getaway vehicle!

Remember to do you first

While shopping, I decided to make meatloaf for Sunday’s dinner. I got the necessary ingredients, and we were ready to head home. On the ride home, my mother-in-law mentioned she was going to make meatloaf as well. I told her I was going to smoke mine.

It’s been months since I’ve smoked anything, partially because I lost my dog in April and I was used to his company when I grilled. My wife mentioned that it was supposed to rain on Sunday, but the idea was already in my head, so the plan was put in motion.

Sunday arrived, and the weather was partly cloudy with small hints of sunlight shining through the clouds. While mixing my meatloaf, my wife told me that her mother mentioned I could put my meatloaf in the oven with hers. I kindly thanked her, and told her I was still going to smoke mine.

When I went out to clean my smoker, the clouds became thicker than earlier. It looked like it might rain. That didn’t matter because I had my mind set on smoking my meatloaf, and barring a report from the National Weather Service, this meatloaf was getting smoked — today!

My wife was upset that I was still going along with my idea, but I shrugged it off. Although she’s my primary caregiver, at some point people have to realize that doing some of the things you love gives you a sense of freedom and independence. It makes you feel like you’re still relevant.

I loaded my coals, finished prepping my meatloaf, and lit the fire. While waiting for the coals to catch, I ran to get a six-pack of beer — my guilty pleasure while on the smoker. 

En route, it started to rain!

I’ve grilled and smoked in the rain before, and I was determined to smoke a meatloaf that day.

By the time I got home, the rain had subsided a bit. My wife, still irritated by my decision, didn’t say a word. She just hummed the disgruntled wife song.

I got the coals hot, put my meatloaf in the smoker, and sat down for a beer. Once the smoke started billowing, the sun came out. Maybe following through with something I started was a good idea!

No matter what, enjoy the ride

Sometimes it’s best for those of us with disabilities to take a leap of faith. Caregivers have our best interests at heart, but they don’t understand how our individual disability affects us not only physically, but also mentally. I never intended to upset my wife with my decision; however, I did expect her to understand that this was something I wanted to do to feel like my old self, or at least to feel like I mattered before the disability.

I can’t begin to express how great I felt, even without my little doggie. He would’ve been excited to be outside enjoying the weather and doing what we love to do.

(Photo by Charlton Harris)

In the end, my wife was very pleased with how the meatloaf turned out, and I noticed she had seconds. More importantly, she understood that doing things I love to do is part of my mental and physical rehabilitation. As I’ve said time and time again, sometimes you have to get out of your own way to make a way.

(Photo by Charlton Harris)

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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.

Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, Pennsylvania, area. He was diagnosed with pulmonary sarcoidosis in 2004 at the age of 40. He has worked over 30 years in advertising and educational media. When he’s not creating, he’s in the kitchen cooking. Charlton is known as a skilled pit-master, homebrewer and jazz aficionado. He hopes his column on sarcoidosis will help inspire readers to live life the best they can, and not shed any tears for this illness.
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Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, Pennsylvania, area. He was diagnosed with pulmonary sarcoidosis in 2004 at the age of 40. He has worked over 30 years in advertising and educational media. When he’s not creating, he’s in the kitchen cooking. Charlton is known as a skilled pit-master, homebrewer and jazz aficionado. He hopes his column on sarcoidosis will help inspire readers to live life the best they can, and not shed any tears for this illness.
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  • unexpected, numbers, keep moving, family memories, anxiety, medical team, dare, simple pleasures, improvement
  • unexpected, numbers, keep moving, family memories, anxiety, medical team, dare, simple pleasures, improvement
  • unexpected, numbers, keep moving, family memories, anxiety, medical team, dare, simple pleasures, improvement

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11 comments

  1. Mary says:

    Your post makes me smile in agreement. Doing your things is great. I am now 10 years past my initial diagnosis. Got a heart transplant along the way and two grandkids to make me glad. Best wishes.

    • Charlton Harris says:

      Hi Mary, your news is AWESOME!! It sounds like you’re doing well, and your transplant is great news. I’m looking into lung transplant, which is highly encouraged by my doctor’s, but we’ll see. Congrats on the grand’s too-I’m sure they keep you smiling and laughing.
      Be blessed and take care-Thanks for reading!
      -C-

    • Charlton Harris says:

      Thank you so much, Margaret and please continue to read and comment. I promise I’ll try to continue to inspire and uplift this community… God knows we need it!
      Many Blessings to you and your loved ones!👍🏽💪🏾❤🙏🏽🙏🏽
      -C-

  2. jane says:

    your story made me smile. i am fortunate to have my sarcodosis in check and lead a fairly normal life. my meds have gotten me off oxygen and my CT shows improvement. i am always so grateful that i am blessed to be as healthy as i am. we are warriors in this fight ! keep Strong ! Jane

    • Charlton Harris says:

      Thanks Jane for taking time to read my story. Great news on having this “obstacle” in check, and I’m happy to hear you’re off the O2 and you’re improving- that’s AWESOME! Stay strong, keep moving and stay BLESSED!👍🏽💪🏾

  3. Lorraine Quaid says:

    Hi Charlton and Jane thank you for your posts. I live in the uk and have had sarcoidois and at there moment feeling really well. But because it’s such a rare condition you can feel alone. So it’s great to read your posts! Please stay well ..we are so vulnerable with this covid 19. Best wishes Lorraine

    • Charlton Harris says:

      Greetings Lorraine! Yes this “obstacle” that we live with makes us feel quite alone, more often than not. That’s why it’s important for us to continue to live our lives and show other folks that we’re not defeated. True, this covid has us all on pins and needles, but if we remain cautious and careful, we can get through this… look at what we’ve been through thus far! Stay well and be Blessed!👍🏽💪🏾

  4. Debra Papa says:

    Great story! Laughter is the best medicine! Would’ve loved to have seen the look on your mother in-law’s face when your wife had seconds of YOUR meatloaf. Your grandfather (I think “Big John” from your prev post) would have been proud!

  5. Thomas Nofer says:

    Charlton , It was a great story and helped me get passed this last 9/11 weekend a little bit easier than years past. I was diagnosed with Sarcoid after being a first first responder at the 9/11 site. So I had it severe right from the start and have been trying so hard to get back to being able to enjoy life. This yr was especially hard because it is the first year that I am not on massive amounts of medications. you brightened my dark weekend and I made meatloaf as well my friend…. I text my friends and family every day to Smile & Laugh for a day gone by without laughter is a wasted day on this short walk we call life !!!!

    Be well and stay safe
    TN

    • Charlton Harris says:

      Hey Thom- THANK YOU, THANK YOU AND THANK YOU for your service and your kind words. I lost a childhood friend, Jasper Baxter in the towers that day and I became a TSA Officer shortly thereafter. I’m overwhelmed that my column helped you during a difficult time. Sometimes it’s hard putting the pieces back together. It’s good news to hear that you’re not on a lot of meds now-you can do this. Sarcoid has a way of keeping us “mentally distracted”, but when you keep moving forward, those days become fewer. I appreciate you taking the time to read my column and please KEEP MOVING FORWARD! You’re so right, acknowledging that a day without love and laughter is a wasted day. Keep laughing and keep living my friend- all of us can do this together. Please keep reading and keep commenting- this is an adventure and I still wanna have fun with it! Continued blessings and good health to you!!💪🏾👍🏽

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