Zoann managed asthma symptoms for nearly two decades only to find that the doctors she saw over those years had never truly seen her. They had never looked beyond her diagnosis to see that she had multiple health issues going on.
When Zoann visited an emergency room in 2010, an attending doctor identified there was more to address than just asthma. Though this would alter the course of her life, in that moment she was grateful to be seen holistically.
These are Zoann’s words, from experience to advice.
Asthma was Only Part of the Medical Picture
I was diagnosed with asthma in 1992. During the next 18 years, the symptoms got worse and the methods of treatment became less effective. This left me taking a 60 mg daily dose of prednisone from 2006-2010.
In July of 2010 I had what I thought was another severe asthma attack. When my home treatment plan did not work by that evening, and the asthma symptoms of coughing and breathlessness were getting worse, my roommate insisted on taking me to the ER.
The ER doctor took one look at me and said, “You may have asthma, but you also have Cushing’s syndrome and possibly other conditions. We’re going to admit you and run a bunch of tests.” I cried, because no doctor had ever looked beyond the asthma. No one saw my multiple health issues and what was going on inside my body.
I was discharged 10 days later, leaving with the original asthma diagnosis and a list of additional diagnoses. I had Cushing’s syndrome, peripheral neuropathy, vocal cord dysfunction, vertigo, glaucoma, and major depressive disorder.
A New, More Complicated Reality
The trickiest part of managing multiple health issues has been figuring out a schedule that includes 22 different medications that have 22 different requirements for using (with or without food, morning only, evening only, bedtime, every six hours, every eight hours, etc.).
This journey would be much more difficult for me without the help of my friend/caregiver. She helps me with my activities of daily living, assists with managing my medications, advises on scheduling medical appointments and makes sure I have enough tissues to get through bad (and occasional good) news after those appointments. She also helps me to determine my care priorities.
The first priority consists of the daily activities: medications, personal care, food, activities of daily living, appointments, and the rests and naps necessary to function.
The second priority is house care: house-keeping lists for my caregiver, budgeting and bill-paying, repairs and replacements, all the minutiae of making sure there is a roof over my head. A most important priority of care!
My biggest source of comfort is my black cat, Mr. Troubles. [He] has trained himself to wake me when my breathing changes and becomes Velcro Kitty when I return home from a hospital visit, refusing to leave my side until he is convinced that I will be OK (usually after I start cleaning his litter box instead of asking a friend to do it).
Practicality & Passion
My advice to someone with multiple health issues would be to have all of your medical information carefully listed. Have the names of the conditions, the medications and dosages for each condition and any medication allergies. Have the the names and specialties of your doctors, current immunizations and past surgeries. Keep your lists updated and make sure you have spare copies to hand out. Use them with new doctors, to take to the ER and to leave on the refrigerator door for the medics.
Make sure you take time for yourself each day; take a nap, read or watch a funny story, even just changing clothes can make a big difference in mood and attitude.
Living with multiple health conditions is challenging, frustrating and lonely. But there are ways to make it tolerable. Find something that you can do, that you are passionate about, even if you can only manage to do it for a short time each day. It will help.
Diagnosed with asthma in 1992; Cushing’s syndrome, peripheral neuropathy, vocal cord dysfunction, vertigo, glaucoma, major depressive disorder in 2010
Have you ever felt like a doctor didn’t look beyond one symptom or diagnosis to see your overall health? Share the experience.