How to Get Organized After a Major Diagnosis

“In life, winning and losing will both happen. What is never acceptable is quitting.”
Earvin “Magic” Johnson

Any time someone is hit with a major diagnosis, life-altering health condition or injury, it can become an overwhelmingly difficult and energy-sapping cross to bear. This guide will help you thrive. 

The News is Horrific. Now What?

Give yourself sufficient time to grieve, but put a time limit on the process. It doesn’t serve anyone by spending your days under the covers dripping in a week of stench. Get up, get clean, and go outside. Whether or not you want to, it’s time to face the music. Your life won’t get any better by avoiding the situation. 

Now that you’re over that, it’s time to make a plan for how you’re going to master your new life. 

Your Guide to Thrive will be a living manual for you and your caregivers to live by. It will include everything necessary to take care of you day to day. Whether you can take care of yourself or you need assistance, it’s important to get organized. Especially if you plan on beating the dealer at his own game. 

Skip to the good stuff and download the checklist.

Crafting Your Guide 

You can use any tool you are comfortable with to keep yourself organized. I am a fan of Evernote, but Microsoft Word or Google Docs works just as well. You can use a notebook, though with the frequent changes, an electronic document will make your life easier. Keeping this online also allows you to share with anyone else who might be interested. 

Whatever tool you choose to use to keep your Guide to Thrive in, make sure it’s somewhere easily accessible. After all you’re going through with this major diagnosis, the last thing you want to do is make it difficult to use or find your Guide, and it ends up going the way of that treadmill sitting in your den. 

Here’s What to Include 

Contact List 

Of course you have each number you need neatly stored in your phone, but the one time you are not near your phone in an emergency, who will think to look for your cardiologist under S for  “Smokin Hot Doc?” 

If you’re tech savvy enough, use a tool like Asana or Trello. You can keep all important contacts in there and share it with your family. This way they can simply search for Cardiologist. 

This list should include not only your doctor’s details, but anyone treating you through this major diagnosis. The home health agency, acupuncturist, shaman, pharmacy, witch doctor, and others. You could even include the name of your “guy,” in the event you run out of your favorite illicit drug. Not that I’m recommending it, of course. 

What is Your Diagnosis or Disability? 

Obvious to you, but you’ll be surprised how many people, caregiver wannabes, well intentioned friends, and home health aides don’t have a clue what is wrong with you, much less let alone how to work with your new limitations. 

Add a brief description of your condition in layman’s terms, along with anything important to about the way it affects you. ie. My right arm doesn’t bend easily. Or, bright lights cause me pain.  Or, my motherinlaw slows the healing process. 

Drugs, Supplements, and Vitamins 

You’ll get asked this question more times than you realize, so you may as well keep them organized. When I go to any appointments, I print this out and hand it to the receptionist along with my insurance card. 

Often overlooked, but just as important as regularly prescribed medications, are any vitamins or supplements you are taking. It might seem pointless since you don’t need a prescription to buy them, but that is the exact reason why you should tell your caregivers and doctors everything you take. 

Alternative Treatments 

This section is useful for all the non western medicine and treatments you are trying. Things like acupuncture, yoga, sensory deprivation or float tanks, cupping, home trepanning, electroshock therapy, bloodletting, exorcism, or anything else your doctor doesn’t have a clue about and is probably unwilling to discuss. 

Recently, marijuana has come back into question as playing a role in patients requiring higher doses of anesthesia during surgery. Don’t worry about disclosing your pot habit. I assure you, no one cares. 

Physical and Occupational Therapies

Typically, physical and occupational therapies are provided for a limited amount of time. Take advantage of their time by taking pictures of the exercises so you remember what they did. You can review the exercises later and do them on your own. 

Diet and Food Preferences  

Whether you have no dietary restrictions, or you are only able to eat through a feeding tube, this section should include everything you want or need to eat. For many people, eating is a source of happiness. After a major diagnosis, it’s important to maintain a proper diet, however that must change. 

You can include favorite recipes, brands of formulas that you can tolerate, or any other details someone should know about your diet. For example, you can say that red sauce gives me heartburn, or you can only tolerate one particular type of feeding tube formula, or anything your mother in law serves makes you sick. 

Conclusion

Remember, this is all about you and your fight to thrive after a major diagnosis! 

How to get organized after a major diagnosis

How to Get Organized After a Major Diagnosis 2

Hey, I'm Jeremy.

Hey, I'm Jeremy.

I help motivated people with disabilities improve their lives and overcome challenges.

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2 Comments

  1. Melanie Reff

    Thanks Jeremy, These are great recommendations! I would also recommend taking a Video as well as photo of the exercise if the PT/OT Allows. This way you remember or your caregivers understand exactly how the exercise is executed. I would also recommend photo/video of any appliance application like Orthotics (Braces) or Prosthetics (artificial limbs) to make sure those are put on correctly as well. Many times people have more then one caregiver and they don’t all come to all appointments. So having the resources to help them help you is a great way to make sure you are getting the care you need.

    Reply
    • Jeremy

      Great suggestions Melanie! Thanks for these.

      Reply

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