I am almost 30. And it’s a (surprise) celebration, as you can see! I’ve learned a lot of lessons along the way and still have a lot more to learn. In celebration I wrote down 30 pieces of advice for living with cystic fibrosis.

1. Cough your heart out. Do it, cough. Let it be. You’ll feel so much better and begin to care so much less about what others think around you.

2. If you can, travel. We know this is a progressive disease. It can become harder to travel as we get older due to our decreasing lung functions and overall health. I still go when I can, but when I was 20, those were the golden years for traveling. Don’t wait until you get older!!!

3. Do every single treatment. Take every pill. If not for your body, do it for your mind. As you get older it’s important to know that you are doing, and have always done, everything you can to stay healthy.

4. Become a hunter. Develop a sixth sense for your disease as hunters do in nature. Feel, step traps and kill infections before they start.

5. Realize that strong, trusting relationships with doctors don’t happen over night and can take years to develop. Ask questions, make sure your doctor is on your team and build a relationship.

6. On that note, trust your gut. There are bad doctors. Run FAR away from them and know you are most likely not the only one who feels that way.

7. Invest in a wonderful, soft, warm heating pad. Bring it everywhere with you. You never know when a fever or infection could strike. This can be your best friend at times.

8. Form a front defense line of your closest people. They are your antibodies. Ask mom for help. Ask dad for help. Ask friends. They will fight with you.

9. Be okay with your feelings about having or not having kids. Not everyone is on the same path. And, if you have kids or want kids, great! Wherever you’re at with it is where you need to be.

10. Give your body daily permission to rest. It’s always on overdrive. Allow your shoulders to release the tension from protecting your lungs all day.

11. Be accepting of where you are at; If you don’t look “good” because you don’t feel good, try and make it out into the world that day. If only for a second, the universe will show you love because it will see you need it and are making the effort to be a part of it. I’m not kidding, try it, it’s magic.

12. Text, Facebook, E-mail. These are saviors for those days when you’ve lost your voice to Tobra or coughing too much.

13. Master the art of “fake” sleeping during a treatment. This can save you from the Physical Therapist who just doesn’t stop talking when you’re hospitalized. Then you will receive the benefits of a treatment and relaxation.

14. And, on that note, engage in conversation with the Physical Therapist when you have the energy, these people are wise and can offer a world of advice that can increase your health. 

15. Crackers and butter. Find that one snack that soothes your soul.

16. Make plans for the future and write them down. Just do it.

17. It’s going to take an extraordinary person to understand you. You are going to have to be an extraordinary person to understand them. Be open to it, and let others in.

18. Be a full time secretary to your health. Schedule in yoga, doctor appointments, third treatments, meetings, and most importantly time to rest.

19. Salt baths, salt lamps, rock salt. Dance in the beauty of salt and its healing abilities.

20. Listen to your body, but don’t give into it. Don’t let the disease have the power. You make the decisions and you decide if plans have to be changed.  Also, thank your body for being resilient. 

21. People either show up or don’t, but it’s not to be taken personally.

22. Sick can be lonely, but it can also be the most popular time of your life.

23. Learn the language of "cough" and share it with your closest people. A cough will tell more than words about how we are feeling.

24. The powers of touch; Find a masseuse, find an electrical massager or learn how to self massage. Your body needs it, your soul needs it.

25. Food is medicine. Experiment and try using foods to fight infections, build immunity and keep yourself healthy.

26. Be cautious of the prescriptions of Ambien, Valium, Xanax and pain medications. While they might be “helping” you in the short term, they could be harming you in the long term and fogging your mental clarity.

27. Smile. Everyone has a story, yours is deep and difficult but it is also filled with light. Let that light shine through. People will be magnetized to it.

28. Educate your family, friends and strangers. People don’t always know if it's ok to ask, so tell them.

29. Never stop learning and exploring. All of the alternative medicines out there can be just as helpful as the medicines your doctor prescribes in my opinion. Do your homework.

30. Love every second of every day and as always, breathe.

 

There you go, those are my words of “wisdom.” I would love some advice from an almost 40-year-old with CF to prepare me for this next decade. Any takers, Brian Callanan? ;)

 

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Vicki Thompson is an almost 30-year-old with cystic fibrosis living in upstate New York. She explores the arts daily, takes care of maintaining her health in every moment and searches for the moon when it is missing from the sky. Follow her journey on Instagram at vicki_lynn27