Getting Stuck in a False Comfort Zone
“The secret of change is to focus all of your energy not on fighting the old, but on building the new.” — Dan Millman
Now that some of the pandemic-era restrictions are being lifted throughout the U.S., I can’t help but feeling like I missed a good deal of my life.
Until recently, I hadn’t been hospitalized since February 2020, when I had a sarcoidosis flare-up. But in the last two weeks, I’ve been hospitalized twice.
On Mother’s Day last month, I was admitted for edema. About a week after I was released, I was readmitted for diverticulitis. The first visit lasted a week, while the second was an overnight stay. It seems that sometimes I just can’t catch a break. As I like to say, “When you least expect it, expect it!”
With the world slowly getting back to at least some normalcy, I had already made up my mind that I would be getting back into the gym at least three times a week. Nothing beats chronic illness more than staying active.
Last year took a toll on all of us, and it hit me particularly hard. I could tell that my health had changed, and not for the better. I couldn’t take my regular trips to the gym, so I had to do my exercises within the confines of my home. It was a challenge since I don’t have a treadmill or a bike, but I made do with some weights and elastic bands. It really doesn’t matter what you do, as long as you’re doing something.
While I was in the hospital, I couldn’t help but think about some of what I have lost thanks to pulmonary sarcoidosis. I’ve lost a good amount of freedom and some lung function. I’ve lost my ability to work in a career I love, and strangely, I’ve lost some friends along the way. Thankfully, I haven’t lost too many, but enough to notice.
Another thing I’ve noticed is that sometimes I find myself on “other people’s time,” when it feels like I’m being simply tolerated and burdensome. This is all the more reason to fend for yourself when you can!
People also have become more hostile and impatient in the last year, and it makes things a little more challenging for those living with a disability.
During my hospital stays, I had nothing but time to reflect on how my life has changed, including where I’ve been, where I’m at, and where I’m headed. I know I’m not the person I used to be, but I also know that sarcoidosis can’t make me a person I don’t want to become.
Between this illness and the pandemic, I’ve become a victim of my own doing. I’ve chosen to sit on the couch for hours watching the same reruns on television that I watched in the hospital three years ago. I’ve chosen to limit my daily activities that otherwise would have allowed me to move more.
I think subconsciously, I slipped back into a comfort zone — the same one I previously needed to escape after having multiple spontaneous pneumothoraces. For whatever reason, sitting around doing absolutely nothing felt good.
I’m sure a lot of folks feel the same way. I hated to admit that my comfort zone was stopping me from living. My couch had become my new best friend, and my television my new spouse. Somehow I missed the slow, deliberate effects these things were having on me. Although science had everyone social distancing and masking up, I chose to hide and come out only when necessary.
All of that is changing now.
Last year, I received a Culinary Rx certification for an online instructional cooking and nutrition course I took at Rouxbe, an online culinary school. I also started a separate nutritional program. Being healthy starts from within.
Now that everything is starting to open up again, I have no excuse not to regain what I lost last year. I must tell myself that my couch is not my best friend, and my television and cocktails are not my spouse and kids. I’m at a crossroads with my rehabilitation, and I must choose wisely. I can’t allow what has become my comfort zone to continue.
Looking at it more deeply, I live with sarcoidosis to tell a story.
When people realize the extent of everything I deal with, it not only can inspire them, but also awaken their inner strength and allow them to persevere in light of whatever challenges they may be facing. One has to be a strong person to deal with this type of thief, and the more we realize our strengths, the stronger we make others.
“If you want to fly, give up everything that weighs you down.” — Adaptation from a Toni Morrison novel
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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.
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Comments
Pam
Thank you for these reflections. I realized last nite that I am in a similar downward spiral (add depression and tears). I havent worked out in a few days but I am going to now!
Charlton Harris
Hey Pam-
Thanks for reading! Every now and again, we all need the inspiration to keep moving ahead. The trick is to KNOW that moving forward will have benefits. You got this!!
-C-
Claire Bergeron
I have sarcoidosis and manage it best with my diet and avoiding physical exertion. I do not eat any foods containing refined sugar. I do not eat eggs, legumes or dairy products as they cause inflammation. I am 81 years old, 5’3” and weigh under 110 lbs. I have never been hospitalized attributing this blessing to discipline and prayer.
Charlton Harris
Hey Claire-
Thanks for reading and commenting on my column. Like you, I've adjusted my diet to best suit me, but I have to admit I do cheat on the weekends. My big spoiler is happy hour! (lol). I do stay physically active but I can do better with more discipline. Prayer certainly has helped me and I'm grateful for every moment. I'm praying for more discipline so I can reach your age!
Take care and God Bless!
-C-
Annel
Thank you for being transparent! Great inspiration!
Charlton Harris
Thanks for reading Annel!
Being honest and transparent not only helps others, but it helps me deal with reality!
Take care and God Bless!
-C-
Debra
This was an article that really hit a homerun for me. Great! Thanks for sharing.
I was diagnosed with pulmonary scaroidosis in 2017 and it's been a battle with the right medications for me since.
I'm now at a semi stage of normalcy.
The monthly infusions seem to be helping.
With this disease I've had to give up my career as a restaurant manager. My strong will to keep going and work even harder last year in a restaurant when less employees were working, lead me to develop nuerosarcoidosis. This was now even more devastating. However, with many prayers and a strong determination, I am healing.
Being active and staying positive is my " Food for Thought " everyday.
Charlton Harris
Hey Debra-
Thanks for reading my column. Like you, I have pulmonary sarcoidosis and having a sense of "normalcy" is a welcomed gift that we can all use. With some restrictions being lifted, I don't see an issue where both of us can become stronger, more determined people. Just remember, you gotta' keep moving and enjoying yourself... even with our respective limitations.
God Bless!
-C-
Adam in Australia
Greetings Charlton, from Sydney Australia. I have been wanting to write to you for some months now to let you know how inspiring and wonderful I have found your posts. A year ago, just around my 56th Birthday while walking my beloved Labrador Archie, I noticed that I was becoming a bit short of breath. As an otherwise fit and well person I reported to my Doctor who did an ECG and within 2 days without question, our wonderful health system had me in hospital for the insertion of a pacemaker. Quite by chance a young Doctor on shift noticed fluid on my chest from an xray and suggested I see the local lung specialist. The diagnosis was Cardiac Sarcoidosis, an incredibly rare diagnosis here in Australia. After a Pet scan which determined the spread it was on to the usual heavy daily and weekly steroids along with a few blood pressure tablets to keep pressure off my heart. I count myself very lucky and often joke that if you are going to be immunocompromised, what better world to do it in then one where everybody suddenly has to wear a mask and wash their hands? We have been very lucky here, having controlled Covid 19 from the start it has had very little effect in my treatment and on the availability of the medical services that I have required. The next few weeks will be very important , I have all the scans again and will find out if we have stopped this disease, although the heart damage is another story. I count my lucky stars that despite all this I have been able to continue most of my day to day activities. I do feel for you , however I am inspired by your determination to find ways of keeping your mind occupied and your family well fed! I look out for your articles when the newsletter arrives and even get worried when I do not see them, so do keep up the great work and thank you for finding the time to keep us posted. On behalf of my wife, daughter and Archie, we wish you every best wish in keeping as fit and well as possible. Thanks again. Adam.
Charlton Harris
Greetings Adam from tranquil Kennet Square Pennsylvania!
I had to take a quick trip out of Philly so I can refresh and relax. How surprised to read that we're the same age and dealing with the same issues. Thank you so much for reading my column and understanding the trials and tribulations we go through with doctor's appointments and medicines. Currently, I'm experiencing some heart-related issues, but I'll get through this. The key is to KNOW whole-heartedly that WE WILL GET THROUGH THIS! This is just an obstacle that we're dealing with, but it's comforting to know that we're not alone in this battle. Keep moving and keep living your life. I'll be 57 on the 24th, and I'm planning on more life changes to help me along this adventure!
Thank you, your wife, daughter, and Archie for being an inspiration for me. . . Keep Moving!!
-C-
Debra
Excellent and inspiring article, Charlton! Positivity is what we ALL need right now. Sarcoidosis is challenging enough but I just lost my caregiver (husband). My whole world has suddenly been turned upside down. I am coming to realize that having Sarcoidosis isn't the worst thing to have happen to a person. Ever since being diagnosed in 2019, I've had to toughen up and start accepting a new "way" of life. Now I've got to put what I've learned towards dealing with life on my own as a Sarc warrior. It's going to take both physical AND mental strength, along with some spirituality. Unless there is absolutely nothing else we can do, I think things like sitting on the couch only rob us of a better quality of life. You, sir, seem to know how to get going and live life again. I keep reading that people with Sarcoidosis need to stay active. And that's exactly what you are doing...and the benefits reflect in your post today. Thank you!
Charlton Harris
Thanks for commenting, Debra.
The hardest part of dealing with this condition is to not let it lull you into a comfort zone. I know, first-hand that when I have a challenging moment, or I realize that I've lost a step or two in doing something that I like, I automatically chalk it up to, "oh well, that's where I am now!" True, we may be at a certain point with this condition, but we can't accept that the point where we are is our final destination. Trust me, I deal with it every day, and I try to beat it. Sometimes we win, and sometimes we lose, but the important thing is that we still fight for a sense of normalcy!
Peace and Blessings!
--
ROBIN
Thank you! I always enjoy reading your column. I was diagnosed in September 2020 with Sarcoidosis- lymph nodes, pulmonary, Neuro and potentially cardiac (if you get diagnosed with a rare disease, I guess you might as well get the rarest forms). Though still working, I find it challenging and have fallen into a comfort zone of sorts myself. Thank you for the reminder that moving is key and to not give in. I will be taking that walk (whatever I can do) that I have been putting off today!
Terry
Thank you Charlton, we all need a reminder from now and then to get off the couch and keep getting on with what’s going on. I am 61 and also have pulmonary sarcoidosis since 1994. I have days of doing things like I used to, and be amazed of how much I can get done. It makes me so happy to be on the upward swing of things. Then, I tank and have so much bone pain and exhaustion that I have to rest for a couple days to recover. I also stress out when people are coming over or when we are doing things with friends. Then I tank again after those events. I also have migraines, arthritis and bursitis. Depression is also a piece of luggage I carry and I know a lot of sarcoidosis Brother's and Sister's do too. That sometimes is one of the worst things to get over. To pull yourself out of that dark hole can be quite daunting. When I had to stop working and go on disability I went into a deep depression. I have always held a job since I was 15. Not working just made me feel worthless. Well, I did not mean to turn this into a therapy session. Let me know if I owe you anything. Thank you again for being an inspiration to all Sarc Brother's and Sister's. Blessings to you and yours!
Susan MacLeod
Hello Charlton, Thank you so much for your very informative letter. It was comforting to read about someone else's challenges with sarcoidosis. Is your diverticulitis related to sarcoidosis? I am a retired VA registered nurse and,fortunately, I was able to work per diem as an admission nurse at a local home care agency Bayada Nurses, Nursing Placement , in RI from retirement in 2008 from VA after 30 yrs. until March 2020. It was a great job for me , because as a per diem staff , I could choose when I worked. I will be 71 in October. When Covid 19 struck, I decided with my daughter agreeing that I shouldn't be working since besides sarcoidosis , I have other medical issues, ie. htn, high chol, DM, II or insulin resistance, ( they can't decide , but I do take small dose of metformin, asthma, cardiomyopathy/ cardiac muscle dysfunction, gerd, ibs, fibromyalgia, chronic migraines, insomnia, oa with recent foot fusion and upcoming rt tkr in Sept, renal dysfunction and a touch of depression /anxiety( gee , I wonder why lol) I try to keep a good sense of humor about this and it helps a lot. I was so sad to have to stop actively working as a nurse. It has meant so much to me. It's part of who I am and I am so grateful for having been able to gave had such a long , fruitful and gratifying career. I was so sad for months , but have adjusted and I am fine with it now. My sarcoidosis involves nodules in my lungs, my lt eye, uveitis, or inflammatory cells in my eye that acutually made me go blind , only for about a day, ( take 4 different scripts everyday), skin behind my lt ear splits open for years and bx. stated that it was inflammatory granuloma cells, most likely consistent with sarcoidosis and most recently md thinks it is effecting my kidneys, ie. creat. 1.3 and gfr 39 in March 2021. The problem is that most of this can't be definetively dx'd by bx because of the area of involvement and location. My rheumatologist is quite sure that much of this is sarcoidosis. I can relate to your mention of the "false comfort zone" so well. It made me smile. I spend a great deal of time in my room watching tv from my bed. I have a memory foam topper for the chronic pain from fibromyalgia and it is truly the only place I am comfortable. Yes, that's me, ie. Law and Order reruns, HGTV, non-stop (laughing to myself) . For years I have told friends/ relatives that I hate to go to sleep at night and hate to get up. I don't think a lot of people understand that, but it is so hard to fall asleep and find a comfortable position and when I get up , it takes hours to get the worst of the pain and stiffness out. ( I guess from the fibromyalgia, oa and sarcoidoisis.) Do a lot of people with sarcoidosis have chronic pain, I wonder. I really became deconditioned when covid arrived, but after I was vaccinated a few month ago , I had a new lease on life and I decided to get up and move. Since April, I have done a lot of work outside in my small, modest yard, but beautiful in my eyes. I stained decks, trellis, painted, planted new flowering schrubs, with help of my grandson, potted flowers, and planted my little garden in the front of my house. I feel so much better after getting something accomplished, although, the next day , I can hardly move and then I do it all over again and it feels wonderful. I also thank God everyday for the many gifts in my life and for my beautiful parents, ie. my best friends who both passed in 2009, 3 months apart. I don't know how I got so lucky to have them for parents. My mother had oa, scleroderma and I think was told some form of sarcoidosis in her skin and her mother had ra. They weren't perfect, but they were mine and they gave us , my sister, brother and myself unconditional love and support. I thought through most of my younger years that everyone's parents were the same , but sadly, my friends, acquaintances informed me that this is not always the case. Well , if you get through this lengthly comment, thank you very much and please keep writing your articles for the newsletter. They are great and provide wonderful support with honesty and humor. God bless you. Sincerely , Susan MacLeod ( This is the first time I have publicly commented about myself, a new and unusual experienc!)
Pati
I, like Pam above, can relate. This is so me lately. I have been struggling every day to do what I know will make me feel somewhat better. And avoid the self.pity trap. Thank you for your thoughts; I enjoy yoir columns and this 1 in particular.
Pati