21 THINGS YOU NEED TO DO TO LIVE WITH SARCOIDOSIS

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Almost all the emails I get are from people asking how I got better, and I always say that it was a combination of different things. When I recently I told someone that, they told me to give them a checklist of everything that I did. So here is my checklist of everything I think every sarcoidosis, pulmonary hypertention, heart failure and any chronic illness patient should do.

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  1. Be Positive! I say it so often that it is number one on my list. You have a chronic disease, and you feel like crap physically. Why take yourself there mentally too? When you start to look at everything in a positive light, life in general is a pleasure, despite how crappy you feel physically.
  2. Love yourself for who you are. You are now a different person. Accept it. Embrace it.
  3. Allow yourself to feel emotions. Be angry, be sad, be everything that you feel. But feel it, acknowledge it and let it go.
  4. Always question your doctor about everything. They want you to take a new medicine, ask what it is for, what it does and what are all the side effects. He/she has to tell you if you ask. They have to cover their ass.
  5. If you don’t like your doctor or they aren’t answering your questions, get rid of them. If you live in a one doctor town and the nearest one is a hundred miles away, then move.
  6. Always remember that it is your body and no one can ever tell you what to do. If something doesn’t “feel right” with your treatment protocol, it probably isn’t. Don’t ever underestimate your intuition. If you don’t feel good about taking a medication or doing an invasive test, then don’t, no matter what anyone says. I always research any medication I am prescribed and I weigh the consequences and I decide if I will take it or not. None of my doctors ever make decisions for me. They suggest. I decide.
  7. Respect what your body is telling you. Learn to listen to the signs. If you need to, keep a daily medical diary so you can discuss days and times of certain symptoms.
  8. Learn about the disease and all the accompanying conditions you have. Learn the terminology. Speak to doctors with their terms. The more knowledgeable you are about your disease the easier it is for you to take control of your treatment plan. I learned the anatomy of the lungs and heart, as well as the terminology of symptoms. When I speak to doctors, I don’t use terms like “I been getting these thumpy feeling things from my heart”. I would say that I am getting a series of ectopic heart beats, and I will record their frequency and duration. Be knowledgeable. The more you know, the more you explain with specifics, the better the doctor can treat. But don’t be cocky.
  9. If you agree with the protocol, follow it. Take you meds as prescribed at the time they are prescribed. If you are taking something twice a day, be sure to take it 12 hours apart as much as possible so you don’t have spikes of medicine in your system.
  10. Learn about your meds in detail. Don’t just rely on the pharmacist or doctor to determine a drug’s interaction. They may not interact on paper, but they may otherwise. Take for instance I take different heart meds, but the doctor never told me never to take them together, nor the pharmacist. The computer says they don’t interact. My own research showed me that taking the two together will cause a dangerous drop in blood pressure, and I already have low blood pressure.
  11. If you think a medicine isn’t working, do not stop it on your own. Some medicines need to be tapered off otherwise you could pay big consequences.
  12. Take vitamins. Research vitamins and herbal supplements that will help or hinder you your illness. There are books out their that list herbal interactions with medications. Get one.
  13. Think of your body as a car. Every part of it needs to work together properly for the whole thing to drive. So too with your body. You can not expect to get better if everything is not in sync. Be sure to have your teeth cleaned at least every six months by a dentist. Yep, teeth cleaned. Your gums have blood vessels that feed right into them, and your mouth is full of bad bacteria. Excessive bacteria can work their way into the blood stream and play havoc with your system.
  14. Eat properly. Try to eat only organic, natural foods. Anything from a box is not nutritional food.
  15. Get out and enjoy nature. Go for a walk and disconnect from everything. Just be in it and enjoy the quiet.
  16. Having a chronic illness is life changing. If you don’t have someone to talk to, try psychotherapy. There is no shame in getting counseling to get through this upheaval in your life.
  17. Explore alternative treatments. I get acupuncture frequently and it helps me. Also massage and chiropractic. As I said in #11, the entire body needs to be treated right.
  18. Try meditation. A calm, stress free brain means a calm body, and a calm mind and body is open to healing. Stress only makes you sicker.
  19. Don’t become your disease. Yes you have it, but it is a part of you. It is not you. Learn to not think about it all the time.
  20. Stop complaining all the time. Why go through life being a miserable ass nobody wants to be around. One complaint is that people lose friends when they get a disease. I think the number one reason is that people become a complainative whiny pain in the butt.
  21. Be happy. Smile. Laugh, go out. Enjoy life. This is the only one you have right now, and there is no absolute guaranty that there is anything after this (I would like to believe so though). You may live for another sixty years. Who knows? Just enjoy it.

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