My life took quick and dramatic turns after the diagnosis of congestive heart failure. I moved from a scenic, culturally rich environment in New Mexico back to So. California where I grew up. I needed the support my Mother and brother could provide, and access to good health care. I left a job and friends I loved, the excitement of living on a 21,000 acre Ranch in Georgia O’Keeffe country where the sky was wide open, to come to congested So. Cal. and live with my Mom and my Stepfather, who had Alzheimer’s Disease. There was an upside, though it was difficult to find gratitude among all the other emotions I was experiencing. That is, my employer provided Disability as well as Medical Insurance. And I am deeply grateful to my family for their support (mind you, not without our share of family dysfunction) all along this journey.
How can a life change so quickly? I don’t have to tell you I was angry – at my body which seemed to have betrayed me, at the doctors whose treatments caused more sickness and who often treated me without feeling or respect, at God, at my own helplessness. I felt vulnerable and dependent and sad – no longer able to control many aspects of my own life. I could not support myself financially. I had disability income, but it was barely enough to live on from month to month. I began the S-L-O-W and uphill journey of finding new doctors, moving into my own place, learning how to be poor, tediously arguing with the insurance company, getting to know my physical limits, being isolated and trying to make new friends. All this with diminished self-image, a deep tiredness, and depression. It is good to write this from a distance of 8 years.
Here is what I learned: perseverance, humility, and more perseverance.
The first thing I found was a really good therapist. I needed a place to express what was real for me. Her constant acceptance & guidance helped me stay above water and move forward. I created my medical team/health support team including a cardiologist, internist, pulmonologist, hospital, dermatologist, gynecologist, therapist, accupuncturist, and yoga teacher. Insurance often pays for things like accupuncture and therapy, and if you ask, providers will lower their fee to what the insurance will pay. I also found a group (after trying several) for people with chronic disease, so I didn’t feel so alone. I learned about diet, herbs, and juicing. I am very open to alternative health practices. I decided my body needed comforting touch and tasty nourishment to counteract the invasive surgical knife, needles, and drugs. This process is ongoing.
1 – Surgery, Procedures, and Treatment:
All medical procedures and drugs have side effects. Most of them are not good. Everyone who loves you says, “But, you’re alive.” It’s hard to argue with that. Here is the catch. Our medical system can basically prescribe medication and surgically remove body parts or malignant growths. It’s very good for acute problems. How these treatments may affect you is not the focus. Previous chest radiation affected my risk for a host of things like breast cancer, skin, thyroid, and lung problems. Chemotherapy weakened my heart and negatively affected my brain power and mental/emotional functioning. I became depressed with what seemed a downward and unending cycle of doctor visits, new medications, side effects, then more doctor visits and medications. What kind of life is this, I asked myself?
2 – Financial Stress:
OK, I’m now living just above the poverty level. This means paying minute attention to one’s finances, not easy when one isn’t very financially literate, hasn’t developed that habit, and is sick. Making a budget (I looked online). Getting a file drawer and making files for all my doctors, expenses, etc. Doing my own taxes. Checking and re-checking medical invoices against insurance statements. I was astounded by the human error and sneaky insurance practices. So much time spent in learning the things they don’t tell you, and unravelling clerical mistakes. I have learned to go right to the supervisor on a phone call, because the customer service rep. I’m speaking with doesn’t know enough to be helpful. And I’ve learned about asking for a payment plan.
Just this week, I spent about 7 hours on the phone between the doctor’s office, the pharmacy, and the drug company regarding the co-pay for a medication that went from about $20 to $100 per month. Unfortunately, I cannot afford it any longer. The pharmacy referred me to the provider, who referred me to the drug manufacturer. After I learned I don’t qualify for any of the manufacturer’s programs, it’s back to the provider to let them know I will no longer be taking this medication. Oh, it turns out the doctor can offer a voucher good for a month’s supply. I hope that works for next month, too. These challenges are ongoing – sometimes I cry or yell at someone on the phone, “I’m the sick person. Why am I doing all this legwork? I’m really stressed!” Emotional muscles and the ability to persevere DO begin developing through this process. I didn’t feel that development until much later, though.
4 – Social Isolation:
Then there is the challenge of knowing how to explain one’s financial status (not to mention one’s disability status) to new people one meets. What do you do? Uh….. And feeling some humiliation and guilt because I am not working and contributing to this society in any “productive” way. In fact, I’m draining it by taking disability income.
Over time, the humiliation has transformed into humility. “I’m retired due to health reasons. Right now, I’m taking digital photography classes and learning a lot. I also practice yoga and enjoy walking in the canyon.” To those who have become (or already were) close ane trusted friends, I do open up and relate my health challenges. I began to request that friends and family ask “What’s new with you?” instead of “How are you feeling?” when greeting me. Often I felt tired, depressed or angry, however, new, good things did happen and that helped all of us find balance.
To come: Part 3 or ICU psychosis and other gifts