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ANCHOR: A Framework for Coping with Chronic Illness
Nancy Groat, HomePN Consumer
People living with chronic illness experience many ups and downs within their illness. These episodes may involve line changes, exacerbation of basic illness, or even a new diagnosis which is added to what may be a long list of things that have already gone wrong. In my experience, a pattern emerges as these health episodes occur: a series of steps that can help us cope with the changes. Taken altogether, the steps spell “ANCHOR,” which is my original way to think of the phases of chronic illness and the processing of changes as they occur.
A — Awareness:
First you are aware that a new problem exists. Something is wrong, a new symptom emerges, sensations change or there is a feeling that something is not right. You may experience anxiety, fear, disorganization — even denial — as the new symptoms appear or existing symptoms worsen.
N — New Insights:
New insights develop as you contact your health care professionals, get diagnosed, and search for information. Hope is mixed with fear as you gather more information. There is still disorganization and some denial — even while calling the physician for an appointment or the ambulance for a ride to the hospital.
C — Challenge:
The challenge of making treatment decisions, receiving the treatment, and dealing with side effects are all parts of the next phase. During the time of challenge your emotions are on a roller-coaster. One day, hour or even minute is fine, while the next is followed by despair or anger. Pain influences emotions during this time, making feelings ebb and flair. Anger and disappointment surface, and must be addressed.
H — Help:
During this phase you seek help; gather the troops. Friends and family rally together, spiritual encouragement is enlisted and health care professionals are questioned about outcomes. The help phase may last a fairly long time depending on treatment programs. Help and hope are good companions. There are still times of sadness and despair, but listening ears are available. ‘Help’ may be one of the more difficult phases, because asking for help is so difficult in our society. You may experience feelings of weakness, inadequacy, and unfairness.
O — Odyssey:
The odyssey of the recovery process is sometimes a long journey; sometimes it means making life style adjustments, but always it is a journey to get to a functional level. As you journey through this latest episode, you start to reorganize your feelings. You begin new routines and start reaching towards new life styles. Grief is important here as changes are made. Any change can be perceived as a loss and must be acknowledged. Crying is important, and sharing the changes with others helps dissipate the grief.
R — Resolution:
Finally, there is resolution. You may integrate the changes, or feel bitterness and self-pity (not to be confused with grieving). You choose whether to continue to work through the feelings of each facet, or to wallow in one or another.
It is difficult to cope with changes in a chronic illness. There are many emotions at work during each facet and there may not be a smooth odyssey, as experience has taught me.
Last spring I identified the facets of ANCHOR as they occurred to me. I live with a chronic illness caused by intestinal lymphangectasia, a rare GI disease causing an abnormal abdominal lymph system. This prevents absorption of fat, protein and the elements essential to life.
Having a history of basal cell cancer on my face, I became suspicious of several unusual looking freckles on my arms. Thinking they would clear up with treatment as the ones on my face had done, I had no qualms about having them removed. Little did I expect the hailstorm that followed: the removal of two basal cell cancers from my arms led to a systemic infection by Candida parasilosis.
Within 24 hours of having two lesions removed from my arms, I developed sudden shaking chills. My temperature was 100° F. Because I have a central venous line (CVL) for total parenteral nutrition (TPN) any indication of infection requires attention. I wanted desperately to deny the possibility of a septicemia, thinking that my hypersensitive body was responding to the excisions of the previous day. My anxiety level peaked as my temperature reached 103° F.
I gathered what strength I could muster to call the appropriate doctors. First was the dermatologist, who said the procedure had been superficial and in no way the cause of the fever. The surgeon who deals with my CVL and TPN was next. Because it was Friday afternoon, I wanted to catch him while he was still in the office. Blood cultures and complete blood count were ordered from the local hospital that afternoon. I also called my internist in case it was something unrelated to any of the above. He concurred with the blood cultures.
The results of the blood cultures were called to my surgeon’s partner who was on call for the weekend. I wasn’t feeling much better, but had kept the fever controlled with medication. About 3:30 Saturday afternoon, the doctor called to say yeast was growing in the blood cultures and I was to go directly to the hospital. My sister helped me pack, got my dog settled, and drove me to the hospital (about an hour away).
Hospitalizations are not new to me, but I still dread the regimentation and need to ask for medications that I take on my own at home. In order to be most comfortable, I requested to be admitted to the oncology unit. I have been on the unit previously and they were acquainted with my situation. I was also more comfortable here, because I had worked on oncology units as a nurse for twelve years. They were very accepting of me, many remembering me from my previous stay three years ago. The Infectious Disease doctors assumed the care of the candidemia I had developed as an opportunistic infection; it had invaded through the excision sites of the basal cell cancers, as well as the cellulitis that had developed around both sites.
The challenges I encountered involved learning about the yeast infection causing the candidemia and the drugs that would treat it. Intravenous (IV) Diflucan was started first, then IV Caspofungin was added as the sensitivity of the yeast was identified. The oral antibiotic linzolid (Zyvox) was started as the excision sites developed cellulitis with a possible staphylococcus infection. It took several days for the fever to break and even longer for the fever symptoms to stop. I could feel my energy leave my body as the infection was being fought. The immune system had been overwhelmed by the infection with an initial white blood count (WBC) of 2,000. (Normal 5,000 -10,000)
The reality of my situation was hitting me pretty hard. I would no longer be able to attend my niece’s graduation and party, nor would I be able to attend the Oley Conference in Milwaukee, WI. For these losses I needed to grieve fully, as well as for the health setback and time it takes to regain the energy I had lost. For every day on bedrest, it takes the body about ten days to recover.
I needed help to make the adjustments necessary to get through the next several weeks. While I was still in the hospital, the RN who worked on discharge planning and the Infectious Disease RNs spent many hours setting up the IV administration of Caspofungin at the local hospital out-patient department so I could go home. I would need to be there at 8:30 every morning for the five days left of my fourteen day course of treatment. They had done their work well as my appearance was anticipated at the clinic, and I couldn’t have asked for a better reception. The IV was hung, and the Caspofungin added within fifteen minutes of my arrival.
Other help that made my transition back home easier, was having my parents stay with me for the first week. They brought me to the hospital, fixed meals for me and provided lots of encouragement. My sisters were around as well and helped, each in her own way, to ease my hospital and post-hospital stay. The church was great in having people bring in meals for us, and assured us they would do whatever was needed. Their prayers were welcome as always.
As I gathered my energy together again, my sisters and friends were available to help me cope. Friends from the Oley network called to express their sorrow at my not being able to attend the conference. The home care nurses picked up where we left off, and continued doing my blood work and assessments. In getting back to my normal health, I continue to use the help of friends, family and health care professionals. Even my dog is helping by behaving much more willingly than before her forced ‘vacation.’
The journey of recovery to the pre-episode level of functioning is often a long time. There are many emotions involved, the main one being grief. I grieved the loss of my health status, the loss of my trip, and the loss of the opportunity to meet new friends at the Oley Conference.
It is easy to become discouraged because of the length of time it takes to regain lost energy. The encouragement of family and friends is important, and can help be a guide to measure progress. The knowledge of having survived another setback reinforces the faith that there is a plan for me in God’s world. I don’t know what it is, but I am still alive to be available for it.
Resolution is a process that occurs every time there is a change in life. One can become bitter and angry, not attempting to integrate changes, or one can integrate the episode into one’s life history. I have done this by adding the episode to my list of medical experiences and by taking each day as it comes, making the best of it I can.
The facets of ANCHOR are a useful tool in helping reach resolution following a change in a chronic illness pattern. By defining the process and naming emotions, it was much easier for me to reach resolution and integration. The steps are not always in a consistent order, many emotions overlap into each facet. If there are many changes occurring simultaneously, facets will get intertwined. As a case in point, this yeast infection has lasted almost one year and I have lost four CVL/PICC lines. Each loss had its own progression of emotions overlapping with the larger infection episode. What is important to remember, is that resolution can be reached and a choice made about how to cope with the roller-coaster feelings, as changes occur within a chronic illness.
Oley Regional Conference
5/22/2017 » 5/25/2017
Oley exhibit at National Home Infusion Association Conference, Orlando, FL