“Grandma, you have arthritis, don’t you?” my 5-year-old grandaughter questioned me with a statement. Children have little tact and diplomacy. It was much easier to talk with her than with adults about my arthritis.
“Yes, I do have arthritis.” Like most children, I expected to have only a few moments of her attention on the subject.
“How come you have have it?”
“Something that we don’t know, I guess. Even though my hands don’t look good, I don’t hurt anymore.” That was it. Her thoughts were on to something else.
My six-year-old niece would simply stare at my hands, then at me. She had silent thoughts, and I could only guess what they were.
When my mother, a former grade school teacher, introduced me to her friends, she usually explained that I had arthritis and then called their attention to my hands as if to emphasize the correctness of her statement. My role in the introduction was defined. I could say nothing. I smiled to the pitying looks of my mother’s friends. It hurt my mother to see that I had arthritis.
I have been with the ladies of my Homemaker’s Club for 30 years. These friends have been absolutely wonderful. They look past my hands and my hurts. Their support through my most difficult times has meant more to me than any of them realize. All through my pain, surgeries, and restricted social activities, these ladies always had the time to send me get well cards, encourage my recovery from operations, visit me in the hospital, and do many other things that bond friends together.
In 1971, a physician of the University of North Dakota Rehabilitation Hospital diagnosed my condition as rheumatoid arthritis. By the age of 37, pain and swelling had become almost constant in my hands and knees.
Prior to the diagnosis, both my husband and I feared what it might be, but neither of us would discuss the matter. I held onto the hope of denial with the thought “If it hasn’t been diagnosed, I don’t have it.” Once the diagnosis was made, reality displaced the artificially safe haven of denial. The diagnosis was to be confirmed by four different rheumatologists over the next few years.
I really did not want to have rheumatoid arthritis. The disease was no stranger to my family; I knew it only too well.
Family history of rheumatoid arthritis
For almost as long as I can remember, my father, a farmer in northern Minnesota, had suffered with the disease. He walked only as far as necessary and, in his later years, used two crutches.
When a race car at the state fair careened off the track and into the audience, my father had both legs broken near the knees. The next year upon his father’s premature death from diabetes, my father took on the obligations of supporting his mother’s family raising his eight younger brothers and sisters. He was only 17.
My father never complained—not about losing his father, not about helping raise his younger brothers and sisters, not about delaying his own marriage for 12 years until the last of his brothers and sisters had reached maturity, and not about the farm home burning down in 1966. He had a wonderful, positive attitude and is one of my most admired persons.
My father could hide the pain in his selection of words, but not in his eyes. I saw him flinch when my 1-year-old son would run and jump on his lap. I saw him get the tell-tale moon face from using too much cortisone. I saw him agonize and grit his teeth when he got up from his easy chair, put on his crutches and walk to the table for dinner. I saw his swollen hands with tightened skin and no indentations between the knuckles. Yet I never remember him mentioning pain.
My father’s sister from southern Minnesota also had rheumatoid arthritis and had difficulty walking and using her hands. Her fingers were swollen, crooked and had the ulnar drift in which the four longer fingers lean away from the thumb. She walked, turned and had arm movements as if her spine and shoulder bones were fused. Since they rarely saw one another, I suspect this had little impact on my father’s thinking.
My father never knew that I was to suffer from the same disease. One year before my diagnosis, he died from cancer of the pancreas. He had no arthritis-related surgeries. I was to have seven. His hands and fingers were straight. Mine are not. I am happy that he didn’t know. It would have added to the burden that he carried with such dignity. He also did not know that some fifteen years later his nephew would be walking with two canes because of rheumatoid arthritis.
The impact of the diagnosis on my life
To mentally accept the fact that I had rheumatoid arthritis was a big adjustment. Different personal feelings about the diagnosis took turns buffeting my thoughts about. I wondered “Why me?” I was locked into a body with pain from which there was no escape. I felt hopeless. I was stuck with it. I was so young. I thought only old people got arthritis. I feared that it would eventually take over my body like it had that of my father. There was no hope of it ever leaving me. I spent many nights crying.
Upon making the diagnosis of rheumatic fever, our well-respected country doctor, who had delivered me as a baby in our farm home, recommended bed rest to prevent heart damage. For one month, I was in the local hospital and for more than another month I stayed in bed at home. Fortunately, my only remnant of rheumatic fever was a slight heart murmur. However, my knees, that had become sore with the rheumatic fever, never were pain-free from that time on. Immediately thereafter, I could only scrub floors if I were to first place padding down. Later, as the knees became more painful, I could no longer kneel at all.
During pregnancies, I felt great. However, I had big flares of pain and swelling after the births of our four children. After our first child was born, the pain was so great that I was not able to lift her up from the crib. My husband would pick her up, give her to me and then I would nurse the child. The post-pregnancy arthritis flare that occurred after the birth of each child would last from four to six weeks. During this time, the pain, swelling and stiffness would travel from one end of my body to the other. Then it would disappear. I gave birth to three children in four years. After the birth of the fourth child 6 years later, the aches, pains and swelling came on with gusto, and there was no reprieve.
My husband begins research
Upon diagnosis, my husband, then a professor at the University of North Dakota, went to the university of North Dakota’s medical school library to read about rheumatoid arthritis. In the evenings, we would talk. He reviewed what he was reading in a factual way all the while trying to encourage me. It became evident that the cause of the disease was not known, and that there was no cure. On the positive side, there were a number of medications commercially available to treat inflammation associated with the disease. He spared me what he was learning about joint destruction caused by rheumatoid arthritis and possible corrective surgeries. He concluded that I had ‘caught a big one.’
My husband tried to encourage me by pledging to alter his research plans to include arthritis. He didn’t want to see me suffer as my father had. He urged me to see a rheumatologist, then later to get a second opinion, a third and a fourth. Because Mayo Clinic of Rochester, Minnesota, has an excellent reputation in medicine, and had developed cortisone for the treatment of arthritis, he had me go through their program for rheumatoid arthritis.
Medication for my arthritis
The diagnosing physician began treating my rheumatoid arthritis using the then standard pyramid sequence of medications. In this approach, the medications judged more safe were to be tried first, with a progression into more potentially hazardous drugs. The physician encouraged me by saying that there were many medications available which he could use to control the disease. He reassured me that help was on the way. In his opinion, it was fortunate that he had diagnosed the disease in its earliest stages and, by treating it properly, not much damage would occur.
As a trained accountant, I began keeping a record of the medications used and what joints were giving me problems. Until 1981, the only medication for arthritis that I used was aspirin. My instructions were to take aspirin tablets four times a day in such amounts as necessary to control the inflammation or until ringing occurred in my ears. If ringing occurred, I was to reduce this amount gradually until the ringing stopped. Between 1971 and 1981, I took 7,300 5-grain tablets (7.6 pounds) of aspirin. I think it helped. Certainly, I had more pain as the effects of aspirin wore off. As the rheumatologist became concerned about aspirin causing stomach ulcers, he changed the medication to Ascriptin. In 1981, I took 5,840 tablets containing 6.1 pounds of the aspirin within this medication. In 1982, he changed the medication to Ecotrin. In all, I used 17,520 tablets containing 18.2 pounds of aspirin. In relatively rapid order between 1982 and 1984, the search for more effective medication led to taking 720 grams (1.6 pounds) of naproxen, and 798 grams (1.8 pounds) of d-penicillamine taken at the same time. d-Penicillamine and Plaquenil were added sequentially in 1984. Gold injections were not tolerated by my body. Each time that I was given a weekly gold injection, I spent the following five days in bed followed by two days up and around. This cycle was repeated four times before the gold injections were stopped. During the latter stages of this period, I continued using Ecotrin and naproxen along with the latest anti-inflammatory medication being tried. At mealtime, my first course would be a panorama of various sized, colored, and shaped tablets.
In retrospect from 1969 to 1984, at no time was I pain-free. Nothing seemed to stop the pain in my body. The disease was going rampant.
Progression of the disease
At times, even the weight of the bed sheets was painful. They felt so heavy on my body. I got through those years by doing a minimum amount of work—taking care of the family and preparing meals. My husband had the habit of inviting university students into our home for meals. When I entertained, it would take two to three days to recover to the point where I was before the event. However, I loved entertaining.
As the disease progressed, I began reducing my social obligations such as teaching a Sunday School class at the church, participating in church women organizations and socializing in the faculty women and wives organization at the University of North Dakota. I was simply too exhausted at the end of the day even though I would take rest periods throughout the day to conserve energy.
Morning stiffness was a big problem. I would take a hot shower in the morning to try to get my body thawed out. The stiffness was terrible. It would take anywhere from one to two hours to get limbered up. I felt that I needed two to three cups of coffee in the morning before wanting to talk with my husband. I think it was difficult for him to understand this. Physically, I looked alright.
Still the arthritis continued going out-of-control in my body. My hands were getting the brunt of it. I was very hard on my hands with sewing, cooking, baking, and cleaning. I was taking care of four children. For six continuous years, I rinsed cloth diapers in the cold water of the commode. My hands were continually swollen, painful and sometimes reddish in color.
An ulnar drift developed in both hands, but my right hand was the worst. I lost strength in my hands. I began dropping things as I worked in the kitchen. My knees continued to have pain, but I had learned to adjust.
My attending rheumatologist referred me to the University of North Dakota Rehabilitation Hospital for physical and occupational therapy. I was given splints in which to rest my wrists, hands and fingers during the night and during the daytime if necessary. The therapists taught me how to do a variety of exercises presumably to strengthen my wrists, hands and fingers. The physiatrist recommended hot wax treatments for my hands and wrists. My husband converted a deep fat fryer into a wax bath with the correct temperature. Each day, I would dip my hands into the warm, melted wax and hold them there for awhile. After they got warm bordering on being uncomfortable, I would wrap my hands in a towel. The wax would slowly harden within the towels as I rested in my favorite chair. After the hot wax treatment, my hands hurt more than before and seemed to be getting worse. It certainly wasn’t helping. So that form of treatment was discontinued.
With the constant pain and feeling of hopelessness, I became weighed down. Finally I decided that feeling sorry for myself was not going to make me better nor make it easier for my family. I would get through this pain and really worked on developing a positive outlook on life. During certain times when I had extra pain, this was especially trying. When I felt down, I would become quiet. However, most of the time I was positive and would not let other people know that I was hurting. No one seemed to understand anyhow. If I talked about my pain, they would talk about theirs, change the subject or discontinue the conversation in a polite way. By outward appearance, I didn’t look like I was hurting.
I may have deceived my husband but not deliberately. He knew I was hurting, but I don’t think he knew how much. Certainly this was true in the beginning when he would ask me why certain household chores were not done.
In 1979, my husband’s then 76-year-old father developed rheumatoid arthritis. I remember his father telling the story of how his wife almost ‘broke his leg’ getting him out of bed in the morning. I overheard him telling my husband “Gee, is this what Helen has to put up with? I knew she was hurting but I had no idea that she was going through this! That poor woman!” Then I think my husband finally understood what I was going through. He became more considerate and helpful. He could correctly interpret my quiet periods, and then he would take care of the household chores not done and occupy the children’s time in order that I might get rest. I have never been good at expressing my inner thoughts about arthritis to him. I prefer to be quiet and adjust to whatever life gives. I really did appreciate those comments of my father-in-law to my husband. I felt that it was more influential coming indirectly from a person outside my immediate family than directly from me.
How much can one tell a husband about health problems without a negative reaction? I couldn’t bear to have him near me in bed when I was hurting. Yet, I didn’t want to lose him and compound my problems. It was a concern that I had—merited or not.
Faith in God and prayer
I have a strong faith in God and had been doing much praying about this disease. My thoughts would go from pleading for relief to asking for a solution through research—my husband’s—or that of anyone else.
I had been taught that God would never give us a burden that is too big for us to bear. It checked out with passages in the Bible. However this pain that I was having was pressing the limit of bigness in my estimation. The ways that I had in mind that the prayer for relief would be answered were slow in coming. In fact, I could not see any progress at all. Though the scriptures teach that prayers will be answered, when they will be is carefully and frustratingly omitted from the promise. A strong trust in Him is needed.
As I became increasingly more desperate, I tried to bargain with God. If He would straighten my fingers and heal my joints, I would become a more powerful witness for Him than in my then present condition. This approach was met with silence.
Many friends and relatives joined me in prayer for research on arthritis. It was comforting for me to know they cared. One specific group that I met with regularly for over 15 years consisted of University of North Dakota faculty wives and town women. With them, I could share the joys and frustrations of the arthritis research. They understood what I was talking about.
Antibiotics and arthritis
Starting at the age of 18 when I had rheumatic fever, the attending country doctor had me taking daily penicillin presumably to prevent reoccurrence of the disease. I continued taking the medication until I was 40 years old in 1974. Then the rheumatologist overseeing my rheumatoid arthritis recommended that I discontinue. I was diagnosed as having rheumatoid arthritis in 1971. It appeared as though when I discontinued the daily penicillin, my arthritis took a turn for the worse. In 1994, my attending physician prescribed another antibiotic, minocycline of the tetracycline family. The only thing that I have noticed is that the dual rheumatoid arthritis nodules on my right elbow decreased in size and redness when on minocycline and increase when not taking it. The size decreases from about the size of two sugar cubes to one.
Diet and arthritis
In 1975, I read a book written by a physician, G.W. Campbell, D.O., who claimed that diet control would reduce arthritis symptoms in seven days. In effect, the physician was recommending what allergists know as one form of the elimination diet. I discussed the matter with my husband. After reviewing Campbell’s plan and not seeing any harm that could come from it, he encouraged me to use the procedure. On discussing the subject with my attending physician, the attitude was about the same as that of my husband’s except that he believed that there was not relationship between arthritis and foods.
With the feeling that I had nothing to lose, I made the decision to follow the Campbell plan. If I would find something, fine. If not, that was all right, too. At the very minimum, I had a plan to try to get better. Some plan is better than no plan. Not having a plan to test tempted me to feel sorry for myself and allow a feeling of hopelessness to enter into my thinking.
After seven days on the restrictive diet recommended by Campbell, I did improve as the physician had predicted. Then I followed his recommendations by adding foods of my former diet back one-at-a-time until my arthritis suddenly became worse. In this manner, I found that wheat-based foods made my arthritis flare. To obtain a confirmation, I asked my attending physician for a wheat allergy test. He explained that my observation was probably not due to the wheat as such but rather a protein within the wheat, gluten. Consequently, he tested me for a gluten allergy, and the test result was positive. Then he taught me that most all of the cereal grains contained gluten. If I were to eliminate it, I should convert my diet from being wheat-based to rice-based.
I was surprised to learn how many foods contain gluten: wheat, oats, rye, and barley. Fortunately, there are whole cookbooks that have been created for people with gluten allergies. With the help of these, I succeeded in removing gluten from my diet. After doing so, I did get better. However, the pain and swelling was reduced but not eliminated. Removing gluten from my diet was a partial answer, not the complete answer. Nevertheless, I was encouraged.
In 1980, a surgeon at Mayo Clinic in Rochester, Minnesota, recommended replacing the major knuckle (MCP) joints on both of my hands, one hand at a time. My right hand was worse than my left. When learning of the surgery success rate, I chose to do my left hand first because I am right handed. I was disappointed to see that within three weeks after surgery, the ulnar drift was back again. The surgeon installed replacement joint made of carbon fiber that could move in all directions like the natural joint.
My hand apparently needed a hinge, not a ball and socket type like the original because my hand went into the ulnar drift almost immediately after surgery.
Several years later, another surgeon at the United Hospital in Grand Forks removed the carbon fiber replacement joint in my left hand and replaced them with hinge-type plastic ones (the Swanson implant). The surgery was successful in keeping my fingers in line with the bones of the hand. However, this hand is now quite stiff. It is a good helping hand but is not able to grip much of anything. The surgeon referred to the second surgery as a rescue one and instructed me that the results would be less than perfect. He was correct.
My right hand was scheduled to have the MCP joints replaced in 1983. But I chose not to have that surgery based on my experience with the left hand. Now my right hand is much more functional than the left one, and I am happy with my decision.
Besides the two MCP joint surgeries, I have had total joint replacements on both knees, the right hip, the right wrist, corrective surgery on both feet, and a hammer toe straightened on my left foot.
My husband’s research 12 years later
With my husband’s arthritis research program at the University of North Dakota, days went into weeks, weeks into months, and months into years. It was difficult for me to place much hope that my husband could or would add anything to the arthritis picture. I felt that his research was more for my mental attitude than for a solution to my physical problems. I always gave him credit for trying and supported him with prayer. I never discouraged him. All the while, my hope was that a new magic medicine would be discovered somewhere, and that when I took it my pains would disappear.
Some 12 years after my husband pledged to begin research on arthritis and after a speaking engagement in Pittsburgh, he came back excited. My husband told me that he thought he understood rheumatoid arthritis and how to control it. I smiled and said nothing. He was always getting excited about something happening in the research laboratory. I was of the belief that a wife can best support her husband by listening. Most of the time, I didn’t understand everything he was talking about so the listening was more physical than mental. After all, 12 years had passed and he hadn’t solved rheumatoid arthritis. It was difficult to get very excited one more time. He passed through many ups and downs in research during those 12 years.
I had my hopes up each time my attending physician would change my medication. When the medication failed to remove my pain, discouragement would come. I was accustomed to this pattern and didn’t wish to get my hopes up high only to have them bashed once again. So I gave my husband an encouraging smile.
In 1984, I accompanied my husband on a trip to an international inflammation research conference at the Indian government research institute in Jammu-Tawi, India. He was to give the plenary lecture on his inflammation research. Prior to this time, I had been in a lot of pain. When my husband asked me to go with him on the trip, I was uncertain. I discussed the matter with my attending rheumatologist. He suggested that I go along. To make the trip more enjoyable, the rheumatologist put me on a two-week, tapered regimen of cortisone (prednisone) beginning at 15 mg/day then a maintenance dose of 5 mg of prednisone each day. I was to stay on my existing regimen of other medications. He made no promises.
We arrived in India one day after Prime Minister Indira Ghandi was assassinated. This was one of the worst possible times to visit India. When we arrived at the airport, buildings in Delhi were on fire, and the city was embroiled with street riots. The nearby hotel was filled and could not honor our reservation. People were milling around the airport seemingly without direction. My husband negotiated with a young man to take us to a downtown hotel in his taxicab for double the usual price. Rather than one taxicab driver, we had the driver and two of his same-age friends in the front seat of the taxi. On the way to the hotel, our driver came upon a group of about 100 young men on the road who were carrying whip-like sticks. They appeared to have just set fire to a bus. The bus was burning in the ditch on the right-hand side of the road, and most of the rioters were watching. They stopped our taxi. The three young men in the front seat of the taxi chattered loudly with the rioters in Hindi. I don’ know what was said, but they let us go through unharmed. My husband decided that this was not a time to take pictures, although he held his camera on his lap. He must have been excited because when the film was developed, one picture was of the lapel of his suit with the ceiling of the taxi in the background!
The next day under heavy security provided by the Indian army, we traveled to Jammu-Tawi by plane. Even though not all speakers were in attendance, the conference proceeded as scheduled. Since the Director of the Institute advised against travel in the local village because he could not guarantee my safety, I attended all sessions of the conference. The talks were essentially unintelligible to me. The atmosphere of the conference was tense. The townspeople came to the gate of the Institute complaining that they had heard that we were eating rich food inappropriate of the time of mourning for their late Prime Minister. The gate attendant assured the crowd that we were not, and the crowd dispersed. As a precaution, the Director had the government-owned motor vehicles spread around the Institute’s grounds fearing that a crowd might burn them.
Two weeks later my husband gave the same talk before the staff at the Central Drug Research Institute in Locknow, India. By this time, the atmosphere throughout India had become more relaxed. In his lecture, my husband outlined conclusions of his cortisone research in animals and was recommending that patients with inflammatory diseases be allowed to self-administer cortisone. The idea was essentially simple: patients were to take cortisone on the bad days and not on the good ones. The average amount of cortisone used would be less than that which the body ordinarily makes, and no side effects would be expected. He argued that by using cortisone in this manner, the patient would get all the wonderful benefits of cortisone without its well-known side effects.
The audience’s interest in my husband’s lecture was much greater than it was in Jammu-Tawi. The discussion after his lecture was spirited and lasted about one hour. Dr. Nand was the catalyst of the discussion, and her concern was that the patients would get worse during the days off cortisone than they had before the program. This had become known as the steroid rebound effect. Her husband, the Director of the Central Drug Research Institute—Dr. Nittya Nand, sat in the front row, attentive and quiet.
After the lecture, Dr. Nittya Nand talked privately with my husband. That evening when we were alone sitting on the balcony of our hotel overlooking the Institute, suddenly I realized I was pain-free. My husband told me what Dr. Nittya Nand had described. Dr. Nand’s father had developed asthma at the age of 40. He refused medication. But by the age of 60, his father no longer had a choice. When prescribed cortisone for the asthma, his father cut the tablets and used them in a manner Dr. Nand didn’t understand.
Dr. Nand didn’t bother to ask my husband if the research results my husband described in his lecture applied to asthma as well as rheumatoid arthritis. Dr. Nand realized that my husband’s research applied to inflammation control, and prolonged inflammation was common to both asthma and rheumatoid arthritis. In the first, the inflammation was in the air passages and in the second in the joint. That needed no clarification. “Now I understand what my father was doing,” Dr. Nand exclaimed. His father had been cutting the cortisone tablets into smaller, less-potent sizes. Then he used the minimum necessary to stop each attack of asthma which he devised by trial and error. He didn’t use cortisone when there was no breathing problems. His father had died at the age of 84.