Managing Sarcoidosis and Mental Health During the COVID-19 Crisis
This has been a rough week, to say the least. Last week, I lost one of my oldest aunts. She was my mother’s oldest sister and she meant a lot to me. She lived in Washington, D.C., and she let me live with her when I took a job there. Two days after her death, I lost my oldest uncle in Virginia. He was my aunt’s brother-in-law. When those two got together, the fireworks started. They were great people and their deaths have left multiple holes in our family.
Then COVID-19 hit the scene
Initially, I was somewhat in a panic. Having pulmonary sarcoidosis means I have severe lung issues and should remain indoors until this pandemic passes. I had two doctors’ appointments last week, one with my pulmonologist and the other with a gastroenterologist.
Upon arriving at my pulmonologist’s office, I was handed a face mask and asked to wear it. I quickly noticed that everyone in the waiting area was wearing one. So much for feeling out of place. But I totally understood and was happy to oblige.
The next day, I returned to the hospital for my second appointment. As soon as I entered the building, I saw that there weren’t a lot of people mulling around. The security guard was asking folks if they knew where they were going and was handing them face masks.
When I arrived at my appointment, surprisingly, not one patient or staff member was wearing a mask. Once I finished my appointment, I asked the nurse for a mask and she gave me the rest from a box on the counter. I left feeling properly equipped to enter the real world.
Remain calm and proceed
The next few days were very stressful. Having serious lung issues, watching all the news coverage about voluntary quarantining and social distancing brought back memories of the two months I spent in the hospital during summer 2017. Spending an excessive amount of time alone can affect a person’s mental health, especially when it seems as if there’s no answer in sight.
I started getting our household in order. My mother-in-law and I went to a few supermarkets. We wanted to make sure each of our households had plenty of groceries and staples in the event we were housebound for more than the recommended 15 days. We even made sure we had enough “adult” beverages on hand to enjoy while quarantined.
My mother-in-law is like my personal bodyguard. I usually take her shopping with me because she makes sure people stay away from me when I’m wearing my oxygen.
Control the situation before it controls you
This past Sunday, my wife and I shopped for a few more needed items that were on sale. When we arrived at the market, I put on my oxygen, plastic gloves, and a face mask from my doctor’s appointment. Inside the store, some people looked at me oddly. Truth be told, wearing all of this ensures me peace of mind because no one dares come near me — social distancing at its best.
Surprisingly, the other shoppers were very pleasant considering we’re in the middle of a health crisis. I even saw one employee wearing a mask and plastic gloves like me. She was exercising social distance, too! We got our groceries and made our way home, laughing at my social distancing skills.
Later that evening, my family and I discussed my health concerns in relation to the global health crisis. I asked them to limit their time out of the house, especially if they’re around other people, because that could have a negative effect on me. I also suggested we periodically disconnect ourselves from the news and social media because of the amount of information being shared. Too much is never a good thing, especially information with a lot of mixed messages.
Having a chronic health condition is serious. You always have to be on top of both your physical and mental health because a crisis like this can escalate your stress level. During this time, your mental health plays a huge part in your ability to physically adjust to this “new” and hopefully short normal. Remember, you’re not alone. There’s safety in numbers and we all have to stick together, figuratively.
Charlton Harris suits up for an outing. (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 Services, and are
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Comments
Peter
Funny, but your article almost brought me to tears.
I'm reading because I have sarcoidosis in the lungs, and am concerned myself, even if I am lucky enough to have 80'ish percent lung capacity. Scary times, but I'm still at work. Still hoping for the best outcome for all.
No statements, about sarcoidosis patients, from health professionals in my country :-(
Charlton Harris
Hey Peter,
Thanks for reading and your response. I live in Philly, and haven't heard anything regarding this virus affecting those with sarcoidosis either. As a rule of thumb, I wear my oxygen, a mask and plastic gloves when I go out to ensure people stay away from me! lol
I think there's a lot more to this virus than is being made public, just know that WE HAVE TO TAKE EXTRA PRECAUTIONS when dealing with people-family members included. We're still fighting for a reason-stay strong!
Vince
Hello Brothers and sisters
Have sarcoid as well. 38 years. 72 years old now ---I am finding some relief from Mullein tea (bulk 1lb pack ) from amazon... 4 cups a day- steep for twenty min. Make a full pot stain and refrigerate--- relieves and helps with all pulmonary and sinus issues...google the benefits. Serrapetase helps me by eating scare tissue and reducing my pain..Google it....Co q 10 , Magnesium , L-carnitine for heart support...D- ribrose for energy support and Niacin for blood flow...D.C.A. to help fight against auto immune weakness....Do your own investigation and make your own decisions...the above has given me a life such as it is....V
Charlton Harris
Thanks for your comments. I use Mullein daily and wild cherry bark-both have tremendous benefits on my pulmonary issues. i also take cumin and reishi mushrooms-great for the immune system.
Thanks for your input!
-C-
Ulf
Hi, very god text Charlton, thank you for sharing. I was diagnosed with sarkiodos tree years a go, they accidently find it when i was voluntary in a medical study. I have no symptom and meet my doctor once a year for test. Now with the Corona epidemic i contacted the hospital for advise related to the sarkiodos but it is the same for anyonelese how is not in the riskgroups? They also said that they don´t know how my sarkiodos react if i get infected. Not much help there. I work a lot at home anayway and following the news and to avoid people, it´s not easy and i have a family.
I´m glad i find your site.
Charlton Harris
Hi Ulf-thanks for your compliment on the column. I'm 55 yrs old and have had pulmonary sarcoidosis for 10-12 yrs. We are considered "high risk" with our health conditions, but you can remain safe if you self isolate (even with your family) and make sure if they go out that they're protected as well. Remember, whatever they bring home can affect you too. I think the best thing for us with health issues to do is stay away from people, and to make sure we sanitize, wash and clean EVERYTHING we come in contact with. If you can, face masks and plastic gloves will keep people away from you if you have to go outside! :)
Ulf
Thanks for the god advice. I live in Sweden and i think the goverment has some control we don´t have (yet) the scenario like Italy or other european countries. But i follow the rules and hope for the best.
Have good day.
Charlton Harris
Thanks for taking time to read the column, and thanks for practicing safety during these times. Remember, we're all in this TOGETHER as a sarc family! Peace to you! :)
Jimmy
Hello, I’m living in the uk , I have sarcoidosis for 10 years I’m 49 years old and this coronavirus is starting to sweep through our country real fast. I have a wife and a 16 year old daughter, Any information on what precautions around the house I should take to protect all of us, can I share a bed with my wife?, how much risk is my body at?. Our government has said a million and half people with severe health problems should self isolate for 12 weeks (letter to follow) do you think I’m in that category?. I Olson walk round golf course I’m I still allowed to do this ?.
Charlton Harris
Hey Jimmy-Thanks for reading!
I've had pulmonary sarcoidosis for at least 10-12 years, maybe longer. Like you, we're not getting any information about how we should act in this situation. Like you, I'm married with 2 children and I tell my family that we should self quarentine in our home with very to no exposure to anyone if we leave. I've been out a few times wearing my oxygen, face mask and plastic gloves and when people see me, they go the other way. . . which is WHY I wear all the stuff. As far as home health goes, excercise in your home if you can, I gargle with warm salt water to loosen any phlem and to lubricate my throat and drink lots of hot tea. Remember your health comes first, so follow your gut during this time.
Keyla
Thank you all very helpful. My mom has Same condition for years. She’s in her 60s. She been self guaranteed for few weeks. Now she’s having flu like simtoms. I’m hoping is just that 🤞🏼
Charlton Harris
I'm hoping it's nothing serious either. I've been self quarantine myself and I'm ready to get out! Masks, gloves and rest will help along with a good diet and tea. 🙏🏽🙏🏽🙏🏽 for mom!
Melissa Sturgill
Great to follow situations related to sarcoidosis and risk factor. I am a health care therapist at a nursing home, 55 YO, and recovering from gallbladder surgery. Our state is in a stay at home but I am supposed to return to work next week. When I first ready about high risk groups I could not find enough information to determine if I am in the group. Contacted my family doctor for input in regards to am I high risk and should I return to work and she messaged me back I just don’t know what to tell you, This is all knew, I would have to follow cdc guidelines. Than my surgeon knowing I have sarcoidosis did not seem concerned about me going back to work, so I contacted my lung specialist for input. The nurse came on the phone and stated, “you are not AS high risk because you are not currently taking immunosuppressant drugs”. Even If I push further to try to protect myself there is no help with income being granted for working people who are high risk! I even discussed My concerns with my human resource person In my company by email and she literally did not respond. Their only concern was that I return to work following my surgeons release. I believe that everything should be spelled out clearly for public to choose but if they choose to stay home and stay protected not go broke in the process! Please fill me in if there is anything I am missing. 10 year with sarcoidosis and no further decline from initial but I am generally cautious when it comes to upper respiratory virus. I understand the fear!
Charlton Harris
Greetings-I'm not sure where you're from, I'm from the States-Philly. I constantly live with the fact that I'm an "at risk" person for any type of illness. I will tell you that this Covid-19 is very scary since it seems to be developing into something different everyday. My suggestion is that since you are in the health field, you should consider YOUR HEALTH first and foremost. With that said, ALWAYS TAKE PRECAUTIONS FIRST FOR YOURSELF! You're no good to anyone if you're ill; moreover, sick. Knock wood, I've been really good during this quarentine; however, my family seems to not take this as serious as I do-I get that. I also practice "social distance" from them too! lol
Don't put yourself in harms way, and if those that don't understand your situation, than "oh well", you don't have to explain, you just have to be well enough to fight another day! Stay healthy and peace!
Melissa Sturgill
Thanks I agree! Stay safe and thank you for your input.
Kathy
Hello all so great to not feel alone. I’ve had Sarcoidosis in my lungs since 1985.I had a lump on my neck, my lymph glands, saliva glands were removed then and sarcoidosis diagnosis
Had X-ray when went to dr, tech said “ you have Sarcoidosis in your lungs “!my dr pulled me out of work early March. I work with 100 people in small cubes
Since I was pulled out seven have been diagnosed as positive
It’s very scary, I stay home, walk
My nutritionist said vitamins c and zinc
I’m out drs note until May 25 could go longer
Charlton Harris
Oh wow-I'm glad your doctor pulled you out! Sorry to hear about your coworkers. Being in close proximity to other people does make you feel nervous and afraid. While you're off, get plenty of rest and try not to stress-that may cause a flare up with the sarcoidosis. The vitamins are a good idea, I take them everyday and I think it helps. What I also think that helps me is drinking a lot of black or insfused teas-they're really helpful to your body,as well as fresh veggies if you can get them. Stay safe and our prayers are with you!
Marcos Phillip
Hi I been diagnostic with lung sarcoid last year in March, I been on prednisone till today, is anyone else suffering from weigh gain like me. I don’t know what else to do, I done a diet, I walked everyday and I can’t seem to loose weight. I went from 100 kilos to 134 kilos that’s a lot. I was taking 60mg of prednisone now I’m down to 5 and I’m still struggling to loose any weight. Does anyone have any suggestions. I should be back to work on Wednesday, how much dangers do you think I will face?.
Thank you for your time
Charlton Harris
Hi Marcos, thanks for reading my column. I was recently on 40mg of prednisone back in February when I was in the hospital and was eventually tapered down to 5mg and then off completely. I had previously been on 5mg for about 9 months a few years ago before I was off of it. I did gain weight, but I found that adjusting to a more plant-based diet helped me loose or control the weight. I stopped drinking coffee and started drinking more green and black teas. I stopped soda's (only on a few occasions) and I did more physical activities because prednisone will make you tired and lethargic. To lose and maintain weight, you have to be disciplined. I also take herbal supplements (dandelion root, black seed capsules, and L-Arginine) these help with my pulmonary sarcoidosis. I hope this helps and wish you all the best!
Cyndi R
Thank you so very much for your website and the information you shared.
I am 56 years old, diagnosed with sarcoidosis about 3 years ago, after a lifetime thinking it was asthma. I have stayed in since March 15th, when everything shut down. It is a stressful time for all, but especially with people who have health conditions.
Question please..Does mullein tea have caffeine, as I have cut caffeine out of my diet since my diagnosis..
Sending everyone love.
Stay safe
Charlton Harris
Hi Cyndi-Thanks for reading my column. I'm 55 and will be 56 in June and I was diagnosed with pulmonary sarcoidosis over 15 years ago. I've tried different medications that my doctor's have prescribed, but I have to say that my herbal supplements seem to work very well with my condition. Like you, I drink mullein tea and have stopped drinking coffee since 2017; however, I do drink a lot of green and black teas which are healthier for you. I also take herbal supplements that I believe have helped me a great deal. I've shared this info with my pulmonologist, and he has no issues with me taking them. I take dandelion root capsules, reishi mushroom capsules (by the way, mushrooms are one of the healthiest foods you can eat) and I also take black seed oil capsules. I hope this helps, and I wish you continued health!
Stephanie
Hi my husband has sarcoidosis in his lungs for about 15 years we are now in June he is so darn anxious. I was working at a daycare he’s to scared for me to return and my kids are 18 and 21 we’ve been great with social distance we don’t go out or see anyone my daughter has returned back to work about a month he was allowing her to see her friend outside and today he freaked out that she was inside the friends home. Is he over reacting a little? He works from home and is driving us all crazy we feel locked up all the time. Any advice I can give him. He assumes if we go it he will get COVID ... help
Charlton Harris
Hey Stephanie-
This is a very weird time that we're in. Like your husband, I too have been putting a lot of pressure on my family and myself about social distancing and being careful about going out in public; especially around other people. When all of this first started, I was overly cautious and for the most part, I and my family stayed inside for the 2-week period. Like your husband, I was overly concerned about my family being around people and didn't want people to come over my house because of my health issues. I became a little more relaxed about the situation because we all mask up, wear gloves, and don't spend a lot of time around other people. Even as a family, we can still practice social distancing indoors-so far, so good. I would suggest to your husband that since the weather is getting more pleasant, he should go outside more (alone) and enjoy and relax. I do take a number of vitamins to help my immune systems such as black seed oil and reishi mushroom and dandelion root capsules. By all means, you have to turn the tv off sometimes, otherwise, he'll make himself even more anxious. Relax and try to get back to some sort of normalcy, eventually, he'll get better. Just understand he's not alone, but us with specific health issues have to be more cautious than normal.
Stephanie
Thank you
Margaret Walsh
The biopsy that came back in 2017 after surgery for thyroid cancer identified my pulmonary sarcoidosis. Since March 13, we've been home except for trips to food store every 3 weeks. I work in a school setting with special needs children. I'm not sure if returning to work ~ my last year as I'm retiring, would jeopardize my health. I've contacted my primary to discuss going out on disability. I've had a less than 1% absenteeism rate over 35 years~ hoping my employer can work with me!
Brian
What information have you seen or heard on what all this mask wearing is doing to those who have sarc? Are we not concerned over the potential damage we’re inflicting on our lungs with constant mask wearing?
Charlton Harris
Good question, Brian- thanks for reading. I haven't heard or read anything regarding constant mask wearing, but I can tell you that surgical masks work better for me than the N90 masks. I also wear my oxygen with my mask and that keeps people away from me!😁👍🏽
I wear my mask inside stores but when I'm outside, I take it down to breathe fresh a air. The longest I've been inside a store was an hour, and I had my oxygen and surgical mask on and i was riding a shopping scooter... that keeps everyone away from... just like I like it!😁👍🏽😷