Managing Stress While Facing an Unpredictable Future With Sarcoidosis
“If you’re not nervous, you’re not paying attention.” – Miles Davis
Over the past few months, I’ve been documenting my visits to a new hospital, where I’m receiving a second opinion regarding my pulmonary sarcoidosis. Any treatments or therapies this team can offer would be welcome, though I’m doing pretty good for the most part.
Dealing with new doctors, a new facility, and new tests is stressful. Stressing about medical decisions can leave me feeling overwhelmed and shattered.
It’s been three years since my first spontaneous pneumothorax, and I can’t tell you how stressful my life has been since then. A year after the first one, I experienced a second one. Not too long after my second pneumothorax, I was hospitalized again. Without realizing it, from that point forward, I would be living with three times the amount of stress I had ever dealt with. It was all related to my survival.
I don’t think many people really consider how stress affects those of us with chronic illnesses and disabilities. A lot of my stress has resulted from lifestyle changes. Many folks have probably experienced the same thing, because when you’re used to living and doing things a certain way, a sudden change can really cause problems.
I remember when I had the first pneumothorax and was hospitalized for two months. All I could think was, “Will I be able to take care of my family again?”
Then, I had other questions, such as what happens now? What’s going to happen to me? Will my family have to take care of me? Will I be a burden? Is this my life?!
All of these thoughts, and then some, crossed my mind. And once my mind starts running in a different direction, it’s hard as hell to get it back on track. This can lead to post-traumatic stress disorder, as I’ve written about previously.
I wish I had access to someone to talk to while hospitalized. It’s definitely helpful to have support with this condition.
When I was first told about sarcoidosis, I didn’t know what it meant or what to make of the diagnosis. I felt fine, life was pretty good, and I was taking care of my home and my family. I didn’t know what to expect, if anything, over the years.
When you live with a chronic illness, you never know what’s going to happen. Every day brings new challenges.
I’d be lying if I didn’t admit that some days, the stress scares me. I’ve made some lifestyle changes that I feel are best for me. The stress and fear have allowed me to take a personal inventory of my life and what’s important to me.
‘If you’re not nervous, you’re not paying attention.’
When I look at the big picture, the feeling of nervousness never really goes away. It just subsides a bit. I still experience stress, and some stressful situations cause mild flare-ups, shortness of breath, and all the other little gems sarcoidosis has to share. But it’s the way that I react to and deal with the stress that makes the difference.
Lately, I’ve been focusing on becoming more self-sufficient. Each day I try my hardest to take care of myself, rather than rely on others. What would happen to me if I lost my caregiver? That’s one of my daily motivations.
At the end of the day, I’m not as nervous as I used to be. I still deal with a lot of stress wondering what will eventually happen to me, but I’m more at ease with the thought. I now think about what can happen to me. If nothing else, I can become a better person. I’ve realized that stress won’t overtake me. I won’t allow it to interfere with my life.
I look at it this way: Since I’ve embarked on the journey with sarcoidosis, I haven’t given myself any bad advice. I’ve been there for myself when others have left, and I’m my own best friend and advocate because I have to look out for myself.
You have to be your main support person, because only you know what’s right for you. Be the leader that everyone follows.
***
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.
About the Author
Comments
Susan Wright
I have sarcoidosis, reading this stressed me out I've never heard the word stress so much in one small story. There is a lot more to life then stress in every other sentence.
Charlton Harris
Good Morning Susan-
Thanks for reading my post! I sincerely apologize for stressing you out, that wasn't my intention. My intention is to show that folks living with sarcoidosis are continually stressed out, if not by the illness, by life's other obstacles. My intention is for us to think about and change how we respond to different stresses that we encounter. I thought some of the links would help us identify the different stresses and ways that we can deal with them. Like sarcoidosis, stress doesn't define us!
Thanks again for reading, and please feel free to continue to comment.
-C-
David Knapp
Susan,
Maybe you should re-write it for him?
Charlton Harris
It's all in how you react/ adjust to sudden stress. Stay in control and you'll handle each situation confidently!👍🏽💪🏾
Ramona Hawkins
Thank You for the information. I was diagnosed in 2018. I still don't know what my symptoms are. I do know that I will be on blood thinners for the rest of my life. I have micro blood clots in my kidneys. I also live with Lupus Sle. So thank You for the information. I understand now what my Doctor's are concerned about
lynn Irvin
Hello I have been living with sarcoidosis over thirty years. I eat healthy and exercising helps alot. Less sugar weight management less caffeine and alcohol. More fruits and vegetables water natural juicing stay away from smoking. I never smoked. Stay away from people who smoke. Its with any illness you have to know your illness take control be balanced and don't let it control you. Rather you have a illness are not there are no guarantees. So my advice is stop stressing because life happens and make wise choices with the life you are given. Lynn Irvin. Thky.
Charlton Harris
Thanks Lynn! Like you, I try to take good care of myself with diet, exercise and a positive outlook on life. I'm on no meds, so I guess I'm doing something right. As far as stress goes, it's how you react/ adjust to it that makes the difference. You control it, not the other way around!👍🏽💪🏾
Debra
NO meds?! That's fantastic!
Frances
I have lived with sarcoidosis for over 40 years it has affected all my organs and loss of vision in one eye surgery etc but my attitude is suck it up it could be worse don’t become a victim.... the word stress never enters my mind!!!
Debra
I think your way of dealing with stress is a positive, Charlton. I'm starting to look at coping with stress as "sheltering in place". Sometimes I just hunker down and take a look around to see what I can do. Positivity sure helps more than negativity ever did. Sometimes that even means avoiding certain in-laws.
Charlton Harris
Amen Debra! I've put a lot of folks on ther back burner because it doesn't help me. They don't / can't understand and i don't expect them to. My health and progress starts with me. Eventually they'll get it!
Keep moving!👍🏽💪🏾🙏🏽🙏🏽
Kaye Hallcroft
Hi
I have been reading your comments. I have just being diagnosed at the age of 68 with sarcoidosis no symptoms other than glaucoma which is stabilized. For all I know I may have had it for the last 20 years it was found through a bone scan taken for my shoulder. I prefer to have the control rather than the illness control me. I try not to worry too much as it causes negativity so I accept and change what I can how I live and eat. I am trying to give up sugar but no easy way any suggestions would be great
Kimberley Munro
I was diagnosed with scardosis less than 6mos ago. I'm underweight and stressed out. No one knows why it's hard for me to breathe for over a year now. I have plenty of tests and a CT scan coming up in the next few months. I try not to think about it but it seems to still stress me out. I recently had my eyes checked because of sudden blurry vision and found out that I have the start of cataracts. Now this just made me worry more. What's next?? Will it get worse? I have dizzy spells sometimes as well. I'm not sure how I got this or what to expect next. I'm scared of what my future holds.
Lynette Mabote
My name is Lyn and I live in Cape Town, South Africa. Your posts and the messages therein touch me, Charlton. Thank you so much for sharing your journey and experiences.
I was 'healthy' until February this year (2021), when a persistent cough led to me to my GP. After testing negative for C19 & Tuberculosis (TB), she performed a lung functionality test which showed a 25% rate in the left lung. She sent me for bloods and X-ray. They returned with dubious results. She couldn't tell what she was seeing but it wasn't good. I was then referred to a Pulmonologist, who sent me for a CT-scan and more bloods. Results were still inconclusive I was admitted for surgical lung thoracotomy (to get a biopsy) in March this year. They cut me up, took the biopsy and diagnosed me with 3rd stage pulmonary sarcoids, with the left lung barely functioning. I don't know what to do about this.
Since March, I've had to navigate pain medication, nerve damage on my right side (i.e. neuropathic pain) and being on steroids. I've been in isolation since the operation, and trying to be mindful with a lifestyle change. It's been a rough road, affecting my family & business. The side effects of the steroids really suck!
I was not equipped to handle this chronic disease because it seems as though it is not a passing PHASE. No matter how much exercise, clean 'anti-inflammatory', gluten/ sugar free diet and meditation I do (I suck at it!) - my life has irrevocably changed.
I thought I was fine (or convinced myself of this). Then I got a viral infection two weeks ago and my immune system took a knock. My GP is nervous & from my most recent X-ray, my pulmonologist says nothing is improving since the operation. He advised that I take it slow and that I apply for temporary disability.
The doc have upped some of my meds and I'm also on calming medication & a double dose of the sleeping tablets because I was unable to sleep for more than 4 hours at a time (prednisone and lyrica side-effects).
I'm defintely stressed and feel alone sometimes. Charles, your experiences give me hope that I can get through this...I guess I need to give myself the time to process all of this, go through the 6 stages of grief and figure out how to remain in the "present". But the stress is definitely there and I acknowledge it.
Thank you again for being open about your illness.
Sherley Alcorn
Hi, my name is Sherley, I'm 72 years old and I was diagnosed with pulmonary sarcoidosis in 1989. This has been a very long and hard journey for me because the best support I had was my husband and he died almost 2 years after my diagnosis. In 2016 I was told the disease had progressed to stage 4 and that I also have pulmonary fibrosis and pulmonary hypertension. I was also told that my life expectency would probably be about 2 years, but the doctor also assured me that God is the only one that will make that call for me. The only medication ever given to me for this disease has been prednisone and I refuse to take it any longer because it alters my mode to the point of me literally having attempted suicide 24 years ago. After waking up in ICU on a respirator I was devastated and disappointed knowing that I couldn't even do that right.
Here I am many years later with COPD with so much pain in my chest (not heart related) when I breathe (most times I can hardly breathe and I use a nebulizer 4 to 6 times a day), and now to top it all off I'm stuck with something I've never heard of before...Ankylosing Spondylitis. These are some of the symptoms I suffer from this new disease that's ended up being my worst nightmare from Hell. I have low back pain and stiffness to the point of me hardly getting up and down now and it's gotten worse over the past year or so. I'm slumped over and can hardly straighten my body completely upward. The pain and stiffness tend to be no better or worse during the day or at night. I'm experiencing loss of appetite, recurring sweats during day and night (my air conditioner stays on 24/7 year round) but no fever, pain in my neck and both shoulders, pain down the length of my spine, pain in my ribs, both hips, down my right thigh and leg, and the entire bottom of both of my feet (I can hardly walk). If I'm resting the pain doesn't feel any better or worse. Light exercise use to make pain feel better for about 30 minutes. This hasn't been a picnic for me by any means.
There's some cruel and evil people in this world that literally make fun of me, some are my own family members since being slumped over and others when I do get out in public for my medical appointments at the hospital. I no longer let it bother me because when I hear the comments and snickering I just think...God had me on His wake up list this morning and some other people didn't make it.
I wish people criticizing and making fun of me with this disease will one day realize that diseases affect people differently and everyone's mobility is different. I know that I probably don't have much time left but I'm happy knowing I've lived this long, because there's so many people that didn't even make it to be my age. I was blessed with 6 wonderful children, 27 grandchildren and 11 great-grandchildren.
I don't do stress because I have no fear of death, even with the pain being so bad and no meds for the pain, I do one day at a time now and tolerate the pain as best as I can, that's all I know to do. In spite of all of this, I still feel blessed while waiting to find out if I have stomach cancer.
Charles, I am happy and thankful you shared your journey with us and to see just how people deal with stress in so many different ways.
Lorraine Cooper
Hello,
I was diagnosed in 2017 having lost a lot of weight, night sweats,high fatigue and generally feeling low. My body always felt in anticipation for something which I now understand is a symptom of sarcoidosis because the immune system is running high. This can also make you feel anxious and places your nerves on edge. It is always around and is exabated by stressful situations or viruses. In the main I can control it but I have had to make changes as I cannot run anymore and need to get lots of rest. I also take turmeric, querciton, Vitamins and a drink from whey powder every day and it seems to help. I take rests also from turmeric and Querciton every so often. It Takes time to navigate as to how best to look after yourself.