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What It Means for Me to Live Fearlessly With Dysautonomia

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I pinpoint a word each year in hopes of focusing my mind and handling challenges that develop when living with chronic medical problems.

This year’s word is “fearless.”

Fearless – bold, brave, courageous, oblivious of dangers or perils, or calmly resolute in facing them.

I did not pick the word fearless, rather it chose me. If you are spiritual like I am, perhaps you believe I received the word from a higher power. If not, that is alright too. Fearless began popping up in different literature I read but ignored. I even noticed a huge outdoor billboard that stated “live fearlessly.” I thought , “This word is not leaving me alone; perhaps it is my word?” The more I ignored it, the more prevalent fearless became. I begrudgingly  accepted the word and moved on.

I am not fearless. I worry about the many complications that five diagnoses may produce – dysautonomia, mitochondria dysfunction, Ehlers-Danlos syndrome, autonomic neuropathy and Sjogren’s syndrome. It is natural to have some fear when dealing with chronic illnesses, but if fear stops you from living, that is problematic.

I have faced added challenges in 2018. First being the death of a dear friend. My husband was in day six of the flu that swept the nation when it was time to travel hundreds of miles to the friend’s funeral. At the last possible moment to leave home, he had improved enough to be left behind and I decided to travel alone. I had refilled and packed my medications several days earlier. All that was needed was a suitcase with clothes, snacks and drinks.

I made the decision to focus on one hour at a time during the drive, rather than the enormity of the miles. This tactic allowed me to stay calm and not overwhelmed by what I was undertaking. I typically experience dysautonomia symptoms about an hour into driving. At that point, I stop, stretch, hydrate and rest until I am able to drive.

Despite an emergency room visit for a sinus infection and migraine, the trip went well. I even stood in front of a congregation at the service and read a piece I wrote about my friend. Fear would tell me it’s impossible to travel alone, impossible to stand at church (standing still with dysautonomia is problematic). But I did it and this has only empowered me to try other things.

I am currently experiencing another situation in which fear is trying to steal my calm. Insurance changes have challenged my patience and perseverance. A new insurance company has decided I cannot see an out-of-state cardiologist who specializes in dysautonomia and who implanted and adjusts the pacemaker I need due to bradycardia.

The insurance case manager told me I can see three specialists locally. After checking, I found that none of them specialize in dysautonomia. In fact, in the United Stares there are few doctors who treat us – a fact that both infuriates and empowers me to advocate for more awareness of this dreadful disorder. I am currently waiting for another cardiologist to review my records and decide if I can be treated. I am less than hopeful since it took me four phone calls to get someone from this large hospital to even know how to pronounce dysautonomia. But I need to comply with insurance so I can make my appeal of  the denial more credible.

I have seen the out-of-state cardiologist for the last six and a half years. He has greatly improved my daily functioning. Am I cured? No. I have symptoms each day and each hour, but I have learned how to manage them the best I can. And some days that means sleeping a lot, other days I do more activities. The insurance denial has produced fear. But I won’t let it overcome me. Sure I have yelled, screamed and cried, but then I regroup and continue to advocate for my health.

What about you? Are you faced with fear that can detour your quest for health? Here are a few points I am learning or am working on to help deal with the challenges that come from having a diagnosis that is not currently curable.

1. Be as knowledgeable as possible about your illness. Find a reputable organization that provides information. Dysautonomia International is a great resource for information and support. It is a patient-run organization with a medical board of top specialists who review the information.

2. Watch your thoughts. If you start believing you can never do something, it will become reality. Be realistic, but also try new things.

3. Listen to your body. When my hands begin to turn purple it is a barometer that dysautonomia symptoms are arising. I must warm up and elevate feet. Be aware of signs that your body gives you.

4. Take medicines on time daily. This improves functioning.

5. Exercise. Exercise clears the mind and can help with pain. Realize it may be very difficult at first to exercise. Go slow but persevere. Check with your doctor before beginning an exercise plan.

6. Make plans but realize they may have to be modified.

7. Listen to uplifting music or your favorite artist.

8. Remember to breathe through your nose. Deep breaths can be calming.

9. Be kind to yourself. If you fail, forgive yourself.

10. Take a large task and break it down into smaller sections. This will help fight being overwhelmed.

11. Share your fears with someone you trust.

12. Find activities you enjoy and do them.

13. Try to get out of your home and be with other people. Being alone often can increase loneliness. If you are housebound, reach out to people by telephone and computer. Invite friends to visit.

14. Find support online. There are Facebook pages for many illnesses and topics. Practice safety and don’t share personal information, such as where you live.

15. Realize that fear is a normal feeling when dealing with the unknowns of medical problems.

16. Rest as needed.

17. Find humor, laugh.

18. Take care of your mental health. This may include talking to a trusted friend, praying, seeking therapy, and doing other things that help you feel strong and valued.

19. Believe in yourself. You are a great resource for your doctors. Because you live with and know your symptoms best, share them. If someone does not believe you or does not help you, seek out other assistance. In my insurance denial case, I had to make several phone calls and be told, “Yes, we can treat you without knowing how to pronounce dysautonomia.” Ask to speak with an office manager or supervisor if you cannot get the right assistance.

20. And finally, do not give up. Take a break if you must, but then continue to persevere to find the best way to live with chronic illness.

Getty Image by Olga Anistratenko (Toshka)

Originally published: May 11, 2018
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