Learning Which Numbers Really Matter
It’s easy to forget what’s most important when living with a chronic health condition.
I reflect on this often, especially when I’m working out at the gym or trying to do “normal” activities. Achieving a sense of normalcy with sarcoidosis is difficult, especially during a pandemic.
A shifting sense of normalcy
When I was in good health, I would walk every day. After I was laid off from my last job, walking became my therapy. I’d walk my dog in the park or go for a bike ride, but that all changed after I had spontaneous pneumothoraces, which I’ve previously written about.
Now I find a sense of normalcy in hitting the gym and using the treadmill and the stationary bike. It’s not the same, but it’s better for me because I can bring my portable oxygen, exercise in a controlled environment, and remain close to home should I experience any health issues.
I also miss working every day. That might sound crazy, but when I was working, I felt a sense of being. I was accomplishing something, making money, providing for my family, and paying my bills. I don’t know about you, but I really don’t mind paying bills. It makes me feel like I matter and reminds me that I have a stake in this game of life.
In making sure my bills were paid, I always kept on top of my credit. At one point, my credit score dropped because I had closed a few accounts, leading to inquiries on my report. I investigated the issue and discovered how I could correct some of my credit problems, even though they were relatively minor. I wrote letters to businesses questioning my report, and over time my score gradually improved. I was able to refinance my mortgage and acquire a store charge, which enabled me to purchase much-needed appliances for the house.
Focusing on a different set of numbers
My outlook on financial responsibilities has changed since my first spontaneous pneumothorax four years ago. I’ve learned to put things into perspective. I don’t pay too much attention to my credit score anymore. At 57, I doubt that I’ll buy another house, co-sign a loan, or use a lot of revolving credit going forward.
Life can be a numbers game. The only numbers I concentrate on now are my oxygen saturation, which should remain between 89-99%, and my blood pressure, which should be between 100/70 and 120/80 mm Hg. These numbers, in addition to any dizziness, chest pain, or headaches, indicate whether I’m OK or need to visit the nearest emergency room.
The only other important number is my mortgage payment. It reminds me that I have a home filled with people I love, and it’s my responsibility to keep it that way. That’s my stake in this game of life.
Don’t get me wrong, my credit score is still important. It reminds me that I’m responsible, and that my choices matter to some faceless entity.
Charlton’s new Jeep Compass. (Photo by Charlton Harris)
I recently used my improved credit score to make a big difference in my family’s life: I got a new car! I’ve never had a new car or a car payment. It makes sense for me to enjoy life by utilizing the tools and resources that I have.
Sometimes we have to take a leap of faith and do what we think is best for us, including deciding what’s most important. Faith may be all we have while seeking some semblance of normalcy amid life’s changes. I’m trying to make my faith count toward something that matters to my family and me.
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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Christine
Wow! Every single thing you said is ME. Except the gym part. I'm not there yet. I work from home and I can't imagine not working. It does give me a sense of being and accomplishment. I love paying my bills and contributing to my household. Thanks for sharing. It is great to know we are not alone. Congratulations on settling in to your new "Norm"
Continued prayers for my fellow Sarc. warriors.
Charlton Harris
Thanks, Christine!
I think I was reignited to hit the gym after spending 2 months in the hospital, along with the subsequent stays following. Pulmonary Rehab helped with that too. Since you're working from home, I'd suggest leaving from time to time if you can. If not, the 4 walls will be closing in on you real soon so it's important to keep your mind active. I';m currently looking for a work from home option so I don't have so much down time.
Good luck going forward and stay blessed.
Thanks for reading and commenting!
-C-
Janet
I have had sarcoidosis for about 17 years with a granuloma in my lung .Now I am having lymphatic issues but have not been able to get to a pulmonary specialist for treatment because of covid. This isolation is dreadful.
Charlton Harris
Hi Janet!
I'm sorry to hear about your challenges, but please know that you're not alone in this fight! Stick with your pulmonary specialist and ASK QUESTIONS!! If you can, start moving as much as you can. This condition doesn't like a body that moves, so keep moving and stay safe. Remember, this too shall pass!
Thanks for reading!
-C-
Martin Conway
My advanced pulmonary Sarcoidosis has been dormant since 2000 but hit me with a vengeance four years ago. Have had superb support from friends and family and with intravenous steroid treatment have managed to keep it at bay up till now. Recent lung function tests at royal Brompton hospital in Chelsea revealed lung capacity had taken a big hit but steroid infusions hopefully doing the business. Remaining upbeat and positive and with all my clan ( six kids, sixteen grandchildren) have all the incentive to keep fighting and beating this disease !! Always smiling!!!
Charlton Harris
Cheers, Martin!
Like you, my pulmonary sarcoidosis was dormant until my first pneumothorax. After that, the health issues seemed like a steady poke in the eye. But like you, I have the attitude to keep it moving, keep smiling and keep laughing. You're not alone with this condition, but you're doing the right thing by allowing yourself to "live" the best you can!
Peace and keep smiling! BTW, London was my favorite travel location!
-C-
Dr Stephanie Fowler, PhD
Hello.
I truly appreciate you telling your truth that summit how many of us feel and the reality for us all. Whether we say it not, it appears to become our reality. I felt every word and punctuation mark expressed to tell your story, I will plan a Live Instagram/FB addressing how life is for others living with Sarcoidosis and surviving the COVID 19 crisis.
Once again, thank you for your truth.
Charlton Harris
Thank you for reading, Dr. Fowler.
Please let me know when you do your Live stream, I'd be more than interested to tune in.
Stay Blessed and Peace!
-C-
Denise
I am new to the pulmonary Sarcoidosis family. I was diagnosed a year ago, and it has been an emotional roller coaster as I am asymptomatic. Not knowing what to expect in these early stages leave me shaking my head sometimes.
Thank you for your post.
Charlton Harris
Hi Denise,
Thanks for reading! I have a friend of mine who was recently diagnosed, and he had the same concerns. My suggestion to him, and to you is to keep moving. In the early days when I was diagnosed, I just took the news as a grain of salt. I was determined that I wasn't going to let this deter me from doing what I love to do. I kept walking, swimming, and riding my bike. I believe the physical activity helped strengthen my lungs and my endurance. Whatever you can do physically, DO IT! It can only help. This "setback" doesn't like a body that keeps moving, so move on!!
Peace!
-C-
Debra Potter
Charles you did it again,. Wow!! I can not express to you how you always hit home runs talking about this life change for US living with this disease.
I, myself, have pulmonary sarcoidosis. I have also had my experiences with nuerosarcoidosis. I loved working when I did work. I loved that feeling of being. Period. Now, God has another plan for me obviously. I must walk by faith more everyday and NOT by sight.
Thbnk you for sharing!!
Charlton Harris
Thanks for reading, Debra!
Thank you for the compliment of hitting another home run! Yes, this is life changing adventure that we're on, but like you, I believe that God has another plan for us. Maybe our plan is to tell our stories so other's don't feel like they're battling this condition alone.
Please continue to read and comment, and I'll continue to do my best to tell our story.
Peace!
-C-
DebbraP
Excellent article, Charlton! I like that you have accepted Sarcoidosis and have chosen to continue moving forward in life. We may have to do things differently now and some things not at all, but we do have a life to still live. It must have felt liberating to get a new car. We can't let Sarcoidosis hold us back. That's why I want to be able to do things for myself for as long as I can. I want to know the feeling of success.
Charlton Harris
Thanks for reading, Debbra!
I've come to the conclusion that I won't feel sorry for myself, but I'll take the time to do the things that encourage ME and help ME to have a better quality of life. Like all, I have my flaws, and I'm working on eliminating them so I can have a better quality of life. Like life, every day's an adventure and I'm just holding on for the ride.
Thanks for reading!
Peace!
-C-