Wednesday, October 29, 2008

The Beginning of my Mother's Journey Into Her Illnesses

Today I stumbled across an old personal file of mine and while looking through it I found this 4 page letter typed by mom. She gave my sister and me each our own copy with a little note attached that reads "Anne-this copy is for you-I love you". To this day it is bittersweet to read. I don't remember exactly when I received this letter and I believe I have only read it one other time other than today. I'm pretty certain it was sometime around 1995-1998.
Here is the letter (written by mom)...

My journey with heart disease started back in 1979. It has been a rough trip but I feel I have learned so much about myself, life, and living with chronic illness.

I was forty-one years old when I was diagnosed with Coronary Artery Disease. I had asked doctors for a number of years why I was having chest pain and felt so tired most of the time. The thinking in the 1970's was that premenopausal women did not have heart disease. Although I had a very strong family history of heart disease, I was told it was "nerves", "depression", or "young housewife's battle fatigue". Then I would be given a prescription for a tranquilizer, told not to let stress get to me, and sent home. I even went to my parent's cardiologist and was told there were irregularities on my EKG but that I was probably stressed out and sent home - two different times!

Finally, I saw a doctor who I did not tell about my chest pain. I told of my fatigue and the general sense of not feeling well. She asked me to agree to go to the hospital for testing. She felt there was more than fatigue going on. The second night in the hospital, I called the nurse and told her I was having chest pain. The nurse took my blood pressure, asked me some questions and left the room. Shortly she returned with a small bottle of nitroglycerin. When I saw that, it made me angry for I knew what it was and why it was used. She had me place one tablet under my tongue. It worked! Then I was really upset for I knew I was in trouble. Shortly after that, my doctor appeared at my bedside. The time was after midnight but the nurse had called for her to come. The next morning I met the first cardiologist who would be taking care of me.

Three days later, I had my first Coronary Artery Bypass surgery. That was March, 1979. After surgery, I did not seem to be improved. Three months later in July, 1979, the Bypass surgery was repeated. The prognosis given at that time was poor. I was devastated. Our two daughters were in middle and high school. We were told I probably would not live to see either of them graduate from high school. How could this happen to us!

Hal, my husband, called in a psychiatrist to talk to me. I cried a lot and felt so completely hopeless. The psychiatrist encouraged me to take it one day at a time and strive to make it to the next day. Then I would tackle the next day in the same fashion. He helped me to deal with my death and my living. To this day I still work on the premise of one day at a time. I do plan for events knowing that the plans may have to change, but I have learned to be very flexible.

I also was so afraid of dying alone. The doctor taught me to realize that dying was something everyone did alone - even if the room was filled with people. He helped me lose my fear of death and I find I seldom give it much of my thought. I put my energies into living today.

The future that we were told to expect was short and very gloomy. Hal and I agreed and told our doctor to have my chart in the hospital marked "No Code". We just felt that life was over for me. One night I was having a very bad night in Coronary Care. I asked the nurse to call Hal and ask him to come to my side. I felt that I was going to die that night. I wanted Hal to come into my room and be with me. When he came, I asked him to hold my hand. I felt that as long as I held on to his hand I would not die. We held hands for several hours and finally I felt that sense of crisis leave me. I told Hal he should go on home to get some rest. As he got near the door I asked him to tell the nurses "Don't be too quick on the No Code". We have laughed over the years about this incident. We decided early on in this journey that humor was necessary to pull us through. We try to find some humor in all situations. It is difficult sometimes but if you look hard enough you can usually find something to laugh about.

Recently I was in the emergency room with severe angina. It seemed that another heart attack was in progress. There was a woman from housekeeping moving around the area doing her job. Each time she passed my bed she would look over and say, "You feeling any better honey?" and each time I had to say "No". The third time she passed by my bed she asked the question again. My answer was the same as before "No". She said, "You don't look so good neither". Hal and I looked at each other - we had found our humor for the evening. It did break the tension for a moment.

The first four years after my diagnosis I was in the hospital more than I was at home. It was a very difficult time for our family to survive. We did a lot of reading in our search for information and help. We did have some counseling for our daughters and ourselves.

I had been a smoker before the first By-pass surgery. My doctor and my husband collected my cigarettes and lighter the day I was told that I would be having surgery. The respiratory therapist followed right behind them into my room. We worked for the next three days to try to clear my lungs so that I would be in better condition for surgery. After the surgery, I felt so very bad that smoking did not even occur to me. By the time the second By-pass surgery in July 1979 was past, the thought of smoking just was out of the question. I had been through too much already and the thought of smoking again was an anathema.

I was enrolled in Cardiac Rehab after surgery. Each time I did not continue to exercise on a regular basis after finishing the course of rehab. I did change my diet and the way I cooked. I have learned over the years to create interesting and flavorful dishes based on the low-fat way of cooking. Low-fat cooking does not mean unattractive or bland.

Through the 1980's my condition fluctuated between not good and poor. I was hospitalized numerous times. I had to have abdominal surgery twice, I had a pulmonary embolism, I had congestive heart failure problems. It was one thing after another.

Sometimes I would be so weak I needed a wheelchair, I needed a walker for I had a string of leg and foot fractures. The list seems endless.

My energy level was so poor I could function at only a very low level of activity. I was still having trouble with angina. I was sent to the hospital many times because I seemed to be having a heart attack. I became more and more depressed. I went to Mayo Clinic seeking help. Pain had become nearly constant in my chest, my back and in other areas of my body.

Over the years I have also been diagnosed as having Fibromyalgia, Osteoarthritis, Osteoporosis, Psoriasis, and Multiple Sclerosis. The diagnosis of MS came just about two years ago. I was started on Betaseron (Interferon beta-1b) in April of 1994. It has made a great change in my energy level and contributed to improving my overall sense of feeling better. The finding of MS has explained so many of the problems that have confounded the doctors who take care of me. And it has helped me to know that so many mysteries about my condition can be explained.

By the end of 1993 I felt so bad all the time and I could barely walk across a room. I was so worried and depressed about my situation. In early January, 1994, I was again taken by ambulance to the hospital. Another cardiac catherization was done. The idea was to do the cath and then try another angioplasty. I had had a number of catherizations over the years and two angioplasties. At the time of the cath I had a heart attack and was taken to surgery. That was my third Coronary Artery Bypass surgery. To quote the cardiologist, "The recovery in the hospital was stormy". In recovery I went into cardiac arrest. From my point of view it was the worst experience of my life.

I had been having trouble with my vision for a year or more before 1994. I was having holes in what I was seeing, and in other ways my vision was distorted. The doctors thought I was having small strokes. After my third bypass surgery the problem continued to worsen. One morning in the Spring of 1995 I awoke and could not see and could not remember much. I finally was able to remember how to call one of my daughters. I found I could barely talk. I did get her to understand it was me and that I needed help. She came and called for an ambulance. There was another trip to the hospital. At first they thought I had had a stroke again. Further testing finally showed Multiple Sclerosis. The previous "strokes" turned out to be exacerbations of the MS. My vision was so disturbed I was seeing double. I wore an eye patch and could not drive and could barely read. This continued until I had been taking medication for the MS for months. Gradually my vision has improved to where I no longer need the eye patch and I can drive in the day time. My night vision is really not good.

I started another course of Cardiac Rehab after the surgery in January 1994. I have stayed with it this time. The idea that I am expected makes me keep my commitment to my exercise program. I tell everyone it keeps me honest. Since 1994 I have lost over fifty pounds. I have gone from a dress size of 18 or 20 to a size 10 or 12. I am so very proud of myself and how I look and feel. The weight is off and I am toning up the body. I feel better than I ever have most of my adult life. Someday I may even be crowned the Cardiac Rehab Poster Lady!

I have just briefly mention dealing with depression. It is something that at different times I have both dealt with and have denied its presence. It is very difficult to deal with chronic illness, pain, uncertainty created by both, and facing your own mortality. The work needed to create new ways of thinking about life and who you are requires time. It takes a lot of energy, both mental and physical. I have read many books and articles searching for answers and comfort. I have found a psychiatrist who has been a great help over the last number of years. He has helped me to know that adversity comes to all of us but how we diced to feel about it is most important. We cannot control all things that happen to us in our lives. We can control our feelings. Many times I have cried and been devastated by bad things that have come into my life. I let myself have a few tears, and "why me's", but then I must turn my thinking around. I must start to concentrate on thinking "Well, how am I going to cope with this?". I gather information to study and learn about the problem. You cannot cope with or deal with a problem without information. The next step is to take the gathered information and apply it to the problem and how it all relates to me. Next "How can I use this knowledge to help me live each moment in a way that will make me the most comfortable and happy." The major understanding that I feel I have gained is to live each moment to the fullest and to accept it as a gift. The freedom that that way of living and thinking gives you is limited only by your willingness to believe that this is so.

Our daughters are grown and out on their own now. We are grandparents. We are looking forward to retirement soon. I am so filled with wonder and joy to find I have made it almost twenty more years. I know I cannot make all my problems go away. But I can accept each day as a gift and a challenge. And there must be humor in there somewhere.

Marilyn B. Forrester

1 comment:

Vonda and John said...

Anne - I have no advice or suggestions but I do think you are very brave to not only be experiencing your mom's illness for all these years, but to also share from your heart as you in your journal. Blessings,


AND, Thank you for finding me on facebook.