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Doing Illness Well | 130 Agency

Doing Illness Well

August 14, 2017

When a left-brain patient comes out the other side of a serious diagnosis, surgery and recovery, what do you get? In this case, sharp insights and a few ingenious shortcuts through the management side of illness. The list below comes from a couple just out of the medical woods, and therefore current on what helped and what created more to do. (What would you add or contest?) You should find at least one game-changer. That said, may you never need it.

#1 – Immediately after the diagnosis, lean on good friends (or be them). The former-patient said: “The night we got the news, we were in a fog of new information. Two friends (one had been through the same surgery) came just to be with us, to listen, and to help us start to manage all the big new decisions.”
#2 – Before making hard new decisions, consult knowing friends—and their friends. The worst time is the not knowing. Then comes a diagnosis, after which you begin to shape a plan, which brings a form of relief. Now, as you identify and choose surgeons and/or other docs, you need the word on the street: names and references. For this, go to your friends and their friends, and take copious notes. In fact, build a chart with the names and notes.


#3 – Keep people informed your way. 

Once you have definitive news, everyone else wants to know, which also can be overwhelming, exhausting even. You may want to:
Change your phone message to skip the standard call-back language. 

“Thanks for your call,” you say. “Glad to hear from you. Please leave a message.”
Use www.CaringBridge.com and its phone app.

“With every CaringBridge post, we heard from people in texts or voicemails or emails, and every response was a huge lift. I kept them logged so I could go back and reread.”
Update via Facebook. Public or private group, your choice.
Text. Use a small, inner-circle text chain to release sensitive info and ask for prayer.
#4 – Check out www.TakeThemaMeal.com

Especially in the South, concern for a person’s welfare likely involves food. Let friends, family, neighbors, coworkers, know your preferences, the days you want it, what hours of the day to deliver, and anything related. Forgive those who bring food off schedule, which can cause stress trying to find room for it.
#5 – Start a “Blessings Book.” “I used a simple notebook with blue-lined paper, and I wrote in it almost daily: ‘Heard from X. Made me laugh.’ ‘Note from an old HS friend.’ ‘Y called to pray with me, and I was low that day.’ I even noted scheduling that worked out. That list helped me see God’s hand in the crisis.”

#6 – Ask your doc for success-story references, and call them. “Several of them said, ‘This will turn into a blessing, and when it happens, tell us what triggered it.’ At the time, I saw no blessing. I wouldn’t wish cancer on anyone, but now I see blessing in the entire journey. I saw God take care of our needs and not our wants.”

#7 – Leave an ice chest on your front porch. On it, put this laminated sign: “I’m either out or lying down. Please leave food here.” Also, skip the thank-you notes. On another laminated ice-bucket note, put: “THANK YOU with all our hearts for the food, gifts and prayers. We couldn’t do it without you.”
#8 – Consider a spreadsheet. Meds and treatments are a regimen. Especially for those of you engineering-minded, consider the constructive task of making a spreadsheet to show treatments, medicines, when to take and change them, and how they affect you or not. (Side note: Your doc will love a quick overview of meds, times, treatments, and your physical ups and downs.)
#9 – Stay up with bills and recordkeeping

–All doctors bill separately. For a single day at the hospital, you may receive separate bills from anesthesiology, dye injection, lab pathology and the room you’re in. For each day, therefore, open a sleeve or folder. For each bill, have a separate sheet. (Note: Since incoming bills are not labeled by the lead doctor, you must work to keep it straight.) For each event (surgery, treatment) start a log with each doctor involved, and every check or payment, until you pay off everyone.
–Keep a copy of every check. If your credit card offers bonus miles, pay with the card and use the points to take a trip.
#10 – DO NOT self-diagnose and come up with your own medicine. Do not listen to every well-intentioned friend.
#11 – Protect your rest with a two-sided laminated door sign.

–Side one: Shhh: PATIENT UNAVAILABLE. Don’t ring bell, write us on CaringBridge!
–Side two: The PATIENT is here! Ring or knock loudly!
#12 – Care for the caregiver. That person must also go to work, manage food, pay bills, clean house, field calls and mail, run errands, tend kids, and wash clothes. The Caregiver says, “No, I’m fine,” but give him or her a massage, gift certificate—or a night out while you’re with the patient.
#13 – Use music. Music lightens the heart, stirs memories, distracts from fear, rests busy minds.
#14 – For every doc’s appointment, take a friend who takes notes. The docs are short on time, and you’re short on memory. Have the person who drives you to the doc also go with you into the appointment and take notes. Repeat: Never go alone; always take notes.
#15 – Laugh. As often as you can—find every possible reason. This includes NetFlix comedies.