Day 6 of the Cushing's Awareness Challenge: 10 Things I Can't Live Without

1. Cortef/Hydrocortisone:  Without adrenal glands which were removed to control my Cushing's Disease, I must replace cortisol at a normal level.  I take it early in the morning and again early in the afternoon.  If I have an infection or have a major stresser, I must take extra.  Sometimes that is a lot extra!
    
2. Fludrocortisone:  Again, since I have no adrenal glands, I must replace aldosterone.  This medication does that for me.
   
   
3. Solu-Cortef Act-o-Vial:  If I have severe adrenal insufficiency or am having a crisis, I must have an emergency injection of this immediately. I carry one at all times, keep one beside my bed, have one at work, and there is one on my refrigerator.
   
   
4. Crisis letter from my endocrinologist:  With each of my emergency injections is a letter from my endocrinologist explaining my condition, how to treat me, and where to reach him.
     
5. Medic-Alert bracelet:   My bracelet tells my name, my Medic-alert number with phone number where they have all my details, says I  have no adrenal glands, gives my medical allergies. It also says, "Give 100 mg Solu-Cortef, Check Electrolytes."
     
6. Sugar-free sports drink with salt:  I drink a lot of this. I crave salt now, and I often make my own mixture that is similar to the "store-bought" variety.
   
   
7. Wristlet:  I carry this everywhere.  If I carry a purse, I put this in it.  It contains a few pills of all my medicines, my small "wonder wallet" with identification, a syringe, a Solu-cortef Act-o-Vial, and my cell phone.  I made this myself with a hint of zebra print on it.  See yesterday's post for the meaning of that.
   
   
8. Cell phone:  It is my lifeline when I need help, support, people, information, whatever.  It contains emergency numbers, the folks who know what to tell caregivers about me, and much more.
   
9. "Darth":  This is the nickname of my CPAP.  I have central sleep apnea and was diagnosed with that long before I was diagnosed with Cushing's.  Both problems started about the same time, but no one realized the Cushing's part for many years.
   
   
10. Support: Last, but definitely not least, support is so necessary with this disease.  Those who have been through what I have been and know what I deal with are vital to functioning well.  We have a fount of knowledge with our combined experience, and talking/sharing among ourselves is often better than a visit to our doctors.  We tend to figure things out because of the knowledge base we have between us.  (We still see our doctors, though.)  My daughters (with their families) and my parents have been a tremendous support for me during all of my diagnoses and treatments.  I couldn't have done it without them.  My endocrinologist is a huge supporter and tremendous help. He's a gem among endos.  Most of all, the Cushing's Help website and message/support boards have saved my life.  This site led me to the right folks for diagnosis and treatment.  It lead me to the wonderful people who help each other through thick and thin.   And I must mention my grandson here.  I can't live without him, either!