What It’s Like

Following is an article my sister found for me the same week I diagnosed.  What a wonderful creature who cared enough to want to understand what it meant for me to be told I have a chronic illness.  I knew I was having a hard time but for all the communication skills that I claim to possess, I was still unable to articulate simple symptoms, daily aches, frustrations, limitations and alien happenings in my body.  I felt like a gassy child  who couldn’t say the the word ‘toot’, so it cries it’s chubby little face pink and fuchsia while all the other humans scramble around you to try and guess what kind of appeasing you need.

This is the simple yet succinct personal account of a woman who has been a through parallel life with the wolf disease.  The sobbing was more like hiccuping as I latched on to each word, finally knowing that someone else mirrored such similar events and that she understood what it’s like.  Every case is uniquely different, but this was the one I related to the most.  Weeks later I read it to my husband. I remember I was weak that evening and halfway through the pages I was out of breath and having chest pain (that I didn’t admit to, of course).  I hadn’t cried since the last time I read it, and the waterworks opened up once more.

I forget that I’m sick, because my mind feels healthy. It’s only my body that causes conflict.  I had learned to push through pain and exhaustion as if it was normal.  It was second nature to ignore that something was very wrong and would tell myself I was just being a wimp.  He finally understood so much better since I had a comparison that helped me explain where I was struggling the most.  Since I didn’t look sick, it would puzzle us why I was out of commission so often.  We’re still a long way from really understanding the full spectrum of effects that having of having to mind physical health for every step really means (the details that go unspoken and unimagined until that moment actually arrives), but I can’t thank my sister enough for finding this for me.  I go back and re-read it often when I just don’t know how to explain what the heck I feel.

Thanks Nana. You are my favorite.

The Watchtower 1990 5/8 20-24

How I Live With Lupus

The scene is always the same. The doctor walks into the examining room and seats himself across from me. With a warm smile, pen in hand, he asks, “Well, Robin, how are you doing?” As I try to recall in detail the past four weeks of sheer misery, he nods his head and rapidly jots down my symptoms. The reason for these visits? I am one of many thousands who suffer from an autoimmune disorder called lupus. Are you wondering what that is? If so, let me tell you my story.

LOOKING back, I guess I could say I had a fairly normal childhood as a girl. Born in 1958 and raised as an only child by my parents, I grew up in the northwestern United States. At an early age, my mother instilled in me one definite idea: I should always serve the Creator, Jehovah God, in whatever capacity I could.

After graduating from school in 1975, I chose part-time employment in order to devote more time to the ministry of preaching God’s Word. I was content with my way of life and had no plans to change it. Unfortunately, there was going to be a turn of events that would change things for me.

A Turn for the Worse

At age 21, my health began taking a turn for the worse. I started developing medical problems first in one part of my body and then in another. Some were located by doctors and eliminated by surgery. Others remained a mystery, causing the doctors to question not only their reality but my mental and emotional stability as well. Infections seemed to find the road to my body an easy one. Frustration and anxiety ran high—I was continually searching for a doctor who could pinpoint an answer to my health problem.

During one of my better health periods, I met Jack, and we were married in 1983. I felt that once the stress and strain of the wedding and marital adjustment had passed and my life was calmer, my health would eventually improve as well.

I remember waking up one February morning with plans to spend the day taking care of household errands. But my muscles felt so strange, as if they didn’t want to cooperate with one another. I felt a trembling inside, and whenever I tried to pick up anything, I would drop it. ‘Maybe I am just overly tired,’ I comforted myself.

As the day progressed, the feelings became even more bizarre. Cold, numbing sensations alternating with inflammatory aches ran down my neck, arms, and legs. In fact, the symptoms made me so miserable that I went to bed until Jack came home from work. By early evening I was running a low-grade fever and was so weak and light-headed I was barely able to crawl back into bed. We didn’t know what to attribute it to except the flu. That seemed reasonable enough, since there was an influenza epidemic in the area where we lived.

When I woke up the next day, I felt better, at least for the first couple of minutes. But soon the aching started again, particularly down my legs and ankles. My fever was down, but I still felt extremely weak. Flu-type symptoms would alternate with those of a more peculiar nature. I remember thinking over and over to myself, ‘Can this really be just a strain of flu?’ As days passed, there were times when I thought I was getting better; then there were other times when I was so sick I could hardly lift my head off the pillow.

The Search for Help

Two weeks later and eight pounds [4 kg] lighter, I decided it was time to see a doctor. The day of my appointment was the worst I had experienced yet. The pain was so severe that I felt as though someone was pulling my muscles apart and jabbing me with hot knives all at the same time. Added to all of this was a veil of depression weighing heavily upon me. I just sat on the edge of the bed crying.

The first trip to the doctor brought no immediate answer. Different blood tests were run, checking for various types of infectious diseases. Only one came back positive, showing a high degree of inflammation present in the body. Several weeks later, still with no improvement, I consulted another doctor in the same clinic. Again, tests were taken, and again, only one came back abnormal, the same one that had previously been abnormal. Neither doctor had any conclusion other than thinking that it was just a bad virus.

Weeks passed, but time brought no real improvement. Finally, two months after the onset of my illness, I went to see another doctor in the clinic, one who had treated me for various minor illnesses when I was a child. I felt confident that he would pinpoint this mysterious affliction.

Much to my dismay, this doctor did not give me the treatment I was expecting. Instead of sincerely listening to my unusual symptoms, he quickly brushed me off as being a neurotic, implying that my strange complaints arose from my being newly married. I couldn’t believe what I was hearing as I tried to choke back my tears of anger and hurt. However, he did agree to repeat that “positive” test. I will always be grateful for that test!After leaving the clinic, I cried for two hours. I knew there was something definitely wrong with me physically, but it seemed as though no one wanted to take me seriously. The next afternoon, I received a call from the doctor’s office telling me that my blood test came back abnormal once again. I was referred to a rheumatologist (one who specializes in arthritic diseases). I was relieved that finally someone realized that there was an actual problem, but why a rheumatologist? How could arthritis make me feel like this?

An Unwelcome Diagnosis

Two weeks later I found myself sitting in the specialist’s office with Jack beside me. After the initial formalities, I began my story. Much to my surprise, his conclusion was immediate, but definitely not what we were expecting. We were stunned when he said that I was suffering from a connective tissue disease, more modernly known as an autoimmune disease, and that he suspected systemic lupus erythematosus (lupus for short). Was this to become my lot in life? The thought of always being this sick scared me.

The doctor went on to explain that although physicians are able to diagnose diseases of this nature more readily than in the past, they still know relatively little about the cause and therefore have no cure. We also learned that through some breakdown in the immune system, the body is no longer able to distinguish foreign invaders from itself. Therefore, the immune system is constantly manufacturing antibodies against body tissues. It is as if the body rejects itself. These antibodies attack and break down connective tissues as well as wage war with major organs. Unless the disease goes into complete remission, these antibodies are almost always causing symptoms of pain and discomfort throughout the system.

Because of the nature of the disease, the symptoms vary and often differ from person to person. Among the ones that plague me are muscle and joint pain, skin inflammation, rapid or intense heartbeat, shortness of breath, pleurisy pains, nausea, bladder pain and pressure, dizziness, loss of balance, and severe headaches, with subtle effects on the central nervous system resulting in decreased concentration, mood changes, and depression. There are many, many days when my whole body from head to toe feels raw and sore from internal inflammation.

Overwhelming fatigue accompanies this disease as well. Sometimes it is so severe that I wake up in the morning unable to get out of bed. Other times it will grip my body when I least expect it. The feeling is that every ounce of strength drains out of my body, making the slightest exertion, such as twisting the cap off the toothpaste tube, beyond my ability. One thing that can make my fatigue and other symptoms worse is exposure to ultraviolet light in sunlight.

New Adjustments

I had not been able to attend any congregation meetings of Jehovah’s Witnesses for two months, so my first endeavor was to try to build up enough strength so that I once again could meet with my spiritual brothers and sisters. Although it took great effort and discipline, I forced myself to exercise. Finally, with Jack’s help I was able to attend at least some of the meetings. As time went on, my endurance increased to the point where I was able to care for part of the household chores and also to engage in the Kingdom-preaching activity once again. I was excited with the progress of my health and kept trying to do more and more. Unfortunately, that was a big mistake, for I found out the hard way that pushing myself beyond my limit meant going into a flare-up.

Stress is probably the worst enemy I have, and avoiding it is an absolute necessity. I have to say that learning to pace myself has been one of the more difficult adjustments I’ve had to make. Since I like to be very active, I have to set my priorities and remember that going past my limit means complete exhaustion, irritability, depression, and crying spells. I try to have set days for certain chores, but it is virtually impossible to follow a schedule when I am up one day and down the next. Even on good days, I have to rest between major jobs. I now leave certain housekeeping chores for Jack to do. It’s another part of the adjustment for both of us.

How Others Can Help

True friends can also give comfort when one is ill. Feeling that they understand the situation can greatly lessen the stress. But people, imperfect as we are, aren’t always discerning as to what the ill person wants to hear. What sounds like a compliment or word of encouragement to the giver may seem just the opposite to the person not feeling well. When people come up and ask me how I’m feeling, they almost always say something like, “Well, you sure are looking good!” Comments like this tend to make me feel that they are doubting the genuineness of my illness or that because I look good on the outside, I should be feeling good on the inside. Unfortunately, with lupus, outward appearances can be very deceiving. Victims oftentimes look healthy; especially is this the case with women if they have their hair styled and make-up applied.

I remember someone approaching me one evening after one of the congregation meetings and saying: “It’s so nice to see you. I know it’s not always easy for you to come, but we’re glad to see you here tonight.” Words like this make me feel that people understand the situation to a degree.

It’s also easy for a person battling a disease to feel excluded socially because of the up-and-down periods. The unpredictableness and surprise of new symptoms popping up means most plans have to be made tentatively. The disease changes so much that oftentimes plans made only two hours ahead of time may need to be canceled at the last minute. Consequently, much of my life is spent with apprehension and anxiety.

How I Cope

You may wonder how I cope with an illness that plays havoc with my emotions and puts many restrictions on my life. Well, needless to say, it can be very trialsome, not only for me but for Jack as well. Not being able to engage in a lot of the activities other people may consider normal, I have really learned to appreciate the simplest of pleasures, such as preparing a special meal for Jack, spending time with my family, or just sitting and cuddling my kitty. (I love this part)

Because of my sensitivity to sunlight, I have to take protective measures when I engage in the preaching activity. People can always spot me; I’m the one holding a colorful parasol. I avoid being outdoors on really hot days, as the heat makes me very weak. Also, having a limited amount of energy to expend in door-to-door witnessing, I look for other avenues to talk to people about the hope for the future that is found in the Bible.

Trying to focus my attention on the positive things in life as opposed to the negative has helped to ward off the “poor me” syndrome. My biggest struggle is learning not to put excessive demands on myself and then berating myself for falling short. But even with a good outlook, depression, frustration, and the shedding of many tears do occur. When I’m having a really bad day and the veil of gloom seems to hover over me, I try to remember that it will pass, and with extra reliance on God, I’ll get through it.

I have truly come to appreciate Jehovah God’s qualities of compassion and mercy, remembering often the words at Job 34:28: ‘And so he hears the cry of the afflicted one.’ Yes, mankind is sick, in more ways than one. We need help that even the most skilled physicians are unable to give. I believe that soon Jehovah will fulfill the first scripture I learned as a child. Then it will be said of all people: “No resident will say: ‘I am sick.’” (Isaiah 33:24) Doesn’t that sound wonderful? It does to me!

—As told by Robin Kanstul.

[Box on page 21] What Is Lupus?

Lupus is a recurring and currently incurable inflammatory disease. It is an autoimmune disorder that turns antibodies against all the body’s vital organs. However, lupus is not infectious, contagious, or cancerous. How serious can it be? From mild to life-threatening. Its name comes from the Latin word for “wolf,” since many patients have a red face-rash in a shape similar to the facial markings of a wolf. Its cause remains unknown.

(The mention of God and religious practice was not a sneaky underhanded attempt to preach to the reader. It was part of an article and so it completes a story. This blog is not meant to be about religion, but faith does come up every so often.)



Filed under Housewifing, Loopy Lupus, Under the Weather

2 responses to “What It’s Like

  1. Naner

    You are a sweetheart. Thank you so much for your kind words. I’m glad that this information was of great help to you. I think it would be great if more people with this illness would write about their experiences. It will only benefit others. I think that you are providing a great contribution.

  2. Hi, I log on to your new stuff on a regular basis. Your humoristic style
    is awesome, keep up the good work!

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