Mental & Physical Well Being

Maintaining a healthy lifestyle and healthy mental state is essential to managing your Sarcoidosis. Managing Medications The complex and changing nature of Sarcoidosis can result in complex and changing medication regimens for many patients. A few best practices can simplify this part of your life.

  • Get a pill box — It may be the lowest tech tool for your medical care, but a simple, plastic pill box can ensure that you take meds as prescribed and spare you from spending any time or mental energy trying to remember if you took a particular pill before you fell asleep.
  • Get an app — Equip your smart phone or tablet with a medication app that will remind you throughout the day of what pills you need to take and when.
  • Mind the side effects — Many drugs carry long lists of potential side effects. Just because they are listed doesn’ t mean you will experience them. However, it is wise to research potential side effects, including the ‘silent’ ones such as altered blood levels or an increased susceptibility to sunburns. Be mindful of how you feel physically and mentally, and any changes you experience after a medication change. Log the side effects that you experience and talk with your doctors about how to counteract them. It is helpful to ask multiple doctors since not every physician is familiar with every side effect or every counter measure.
  • Befriend a pharmacist — Treating sarcoidosis can involve multiple and changing medications. Consequently, Sarcoidosis patients run the risk of experiencing negative drug interactions.  Prescribing physicians may not be aware that a patient is taking a conflicting drug or may not be aware of the interactions between certain drugs. However good pharmacists can figure that out.

“Try to keep all of your medications in one pharmacy and get to know the top pharmacist there. Ask them questions about new prescriptions and ask them to look at your full list of medications and advise you about any possible interactions.” – Elizabeth Schuler, founder and president of Patient Navigator LLC.

Mental Health

Sarcoidosis patients face real challenges when it comes to maintaining good mental health. They are contending with a chronic disease, complex symptoms and less-than-perfect treatments – conditions that can easily fuel depression. Furthermore, some widely used medications for sarcoidosis can trigger depression, anxiety, mood swings and insomnia.
There is absolutely nothing shameful about depression or other emotional issues, and there is everything to be gained by addressing those issues.

  • Seek Help — If you develop symptoms or even a suspicion of depression, if you start acting in ways that don’ t match your personality, talk to your doctors. Ask about medication side effects, ask about similar conditions in other sarcoidosis patients, ask about possible treatments, ask about the best professionals to consult. Look for a therapist, psychologist or psychiatrist who has expertise in treating people with sarcoidosis or other chronic diseases. And do not assume that a standard dose of a best-selling anti-depressant will be the right treatment for you. Talk to an expert in anti-depressants about what medication will work best for your circumstances and within your medication regimen.
  • Breathe — Meditation, guided imagery, yoga and other mindfulness practices canreduce stress, improve mental clarity and help you cope with tough days.
  • Find Your Joy — Without question, sarcoidosis makes life more difficult, less comfortable, often exhausting and sometimes gets in the way of normal or favorite activities. In the midst of that, it’ s important to focus on what you most value in life and what brings you joy. Focus your energies and your time on those things.

Eat, Rest, Move

Not every treatment comes out of a pill bottle. A commitment to healthy living and knowledge of the healthy habits that work best for you can help you manage your sarcoidosis.

  • Eat Well — Eating healthy is important regardless of your circumstances. But a healthy diet becomes even more essential when you are fighting a disease like Sarcoidosis. Some patients push their eating habits a step further and diligently include foods that fight inflammation, strengthen the immune system and even help counteract side effects of some drugs.

“There are so many foods that can benefit my health. I take a probiotic every day. I avoid sugars, I use healthy fats like olive oil, and I include things like garlic, ginger, turmeric, cinnamon, cherries, pineapple and walnuts in our meals. I even buy our meat from a local farm to avoid the additives. At one point, my blood work improved so much that my doctor was surprised and asked me what I was doing.”– Cascenta Whyte

  • Rest — Sarcoidosis can be exhausting and it’ s important to acknowledge that. Be mindful of how much activity you can handle daily and tailor your schedule around that. Include rest breaks during the day and do not overbook yourself. Lighten the demands on your time by finding ways to simplify or reduce chores. And when you hit a day when you really need to stay in bed, accept it. Your body needs rest to heal.
  • Stay Active, Stay Engaged — Impaired lung function, swollen joints, neuropathy and exhaustion can seriously limit activity levels for Sarcoidosis patients and leave many feeling isolated. But moderate physical activity and regular social interactions can benefit both physical and mental health. Make the effort to get outside, stroll through a park, meet a friend for coffee, indulge in a favorite activity, call or e-mail people. Talk to your doctors about appropriate exercise levels. Pace yourself, but don’ t stop.

“Sarcoid can be a lonely disease. Try to find a sarcoid buddy – someone you can connect with that has a similar experience. You can often message people on Sarcoidosis web sites. It helps to have that understanding and that resource.”– Heidi Junk