My Autoimmune Disease

If you have not heard the miracle story of my Divine Healing from an autoimmune disease, you need to read this!  The blog "Part One" is the story of the long days of illness, and "Part Two" is the miracle ending.

PART ONE

In 2002 I became aware of struggling with constant extreme tiredness and weakness. I was 60 years old, and had been in the ministry all of my adult life. I became more and more weary. I questioned the possibility of “burn-out”.

Over several months I resigned from most of my ministry-related responsibilities, except my pastorate. I resigned from my District leadership position in Royal Rangers, because I was just too worn out. That condition of weariness continued to increase over the next two years. In the winter of 2003/2004 I had bouts with “the flu” several times, with a low-grade fever, nauseated, coughing, congestion, sore throat, and aching muscles.

In the early summer of 2004 I decided to sell my riding horse “Doc” (Percheron/Quarter horse cross) because of his size. My knees were hurting me a lot, and going up and down stairs and getting on and off my very tall and large horse (17+ hands tall) were just too painful.

In mid-June I was the Teen Camp Director of a interdenominational church youth camp. Midway through the week of camp, I became so nervous, shaky, and fatigued that I turned my duties over to someone else, and left camp a day early.

The end of June I helped our son Scott move his family to Minnesota for ministry.

A few days after the Fourth of July, 2004, I attended District Ranger Camp for Royal Rangers. Because of feeling so weak and “wiped out” I agreed to perform my duties as camp chaplain on a limited basis for the week.

Our vacation was scheduled for the last three weeks of July, 2004, but we stayed home the first week because I was sick. After regaining some strength, we left for our cabin in Okanogan County, where we spent two weeks.

On Monday, August 2, 2004, after returning from vacation, I got hit hard by some sort of flu-like virus. Over the next few days I was nauseated with vomiting, diarrhea, and sweating profusely. I lost a tremendous amount of fluid, and couldn’t keep anything down to replenish the fluids lost. The weather was very hot. On Thursday my illness exhilarated, and by early evening I had a fever of 104 degrees. Our family doctor, Dr. Thomas Hanson, instructed my wife by telephone to take me to emergency at Holy Family Hospital. He said later that I might have died that night if Marty hadn’t gotten me there when she did.

I was “out of my head”, and too ill to dress myself and walk to the car, but with Marty’s all-out effort and assistance she somehow got me up the stairs and out to the car in my pajamas. We arrived at the emergency room on August 5, 2004, between 8 and 9 p.m. My temperature was 102 degrees. Over the next three hours the ER personnel brought the fever down, gave me a chest x-ray, and an EKG. It was finally decided that I should be admitted, and somewhere around midnight I was taken upstairs and admitted into room 506, bed 1.

Because of the severe dehydration, my potassium and sodium were dangerously low. There was some question as to whether the x-ray showed pneumonia. My kidneys did not seem to be functioning properly. My heart was not functioning properly, with the top chambers “fluttering” instead of beating normally, and my heart-rate was high.

Over the next two days I was given constant fluids and medication intravenously. I was given medications orally on a number of occasions. Blood samples were taken several times, I was given insulin shots several times, and my blood-sugar was checked regularly. I was visited by Doctor Byrd, Doctor Everett from the Heart Institute, and a pacemaker technician who came to text my pacer (which I have had since 1987). Dr. Bird placed me on a 1400 calorie diet while I was in the hospital. Somewhere in the middle of the day I was wheeled downstairs for an ultrasound of my kidneys. I lost over 25 pounds in a week.

After many tests, lots of fluids by IV, and a whole lot of powerful prayer, I was released on Saturday evening, August 7. The doctors kept me in the hospital for several days without being able to determine the cause of the high fever. They released me, and I went home limper than a dishrag. Decisions on the heart and the pacemaker were placed on “hold” until the blood has been thinned to prevent a stroke.

I woke up the morning of August 28th feeling fairly good, but as the day progressed my condition deteriorated. After calling Doctor Hansen, Marty took me back to the emergency room at Holy Family Hospital on Saturday evening, August 28, for the second stay in August. Again, I was taken in because of a very high fever (without cause), severe head ache, and very sore throat.

It was determined in the emergency room, after consulting with Dr. LeRoy Byrd (the attending physician from the first hospital stay) that they would admit me back to the 5th floor. Within the next couple of days I had episodes of severe cold chills, drenched in sweat, with violent shaking and multiple blankets brought in. They changed my bedding several times because of being soaked in sweat. Dr. Byrd was perplexed, because there seemed to be no cause. To attempt some relief, high doses of Prednisone was given by IV, which seemed to help over a couple of days, and I began to get stronger.

In addition to Doctor Byrd treating me, they called in a specialist in infectious disease. The medical opinion was that I had an infection somewhere in my body, but they were not able to determine where that infection was located.

After a lot of glucose and antibiotics by IV, multiple shots of steroids (Prednisone) to fight inflammation, and then regular shots of insulin to deal with raising blood sugar levels, I was released on Wednesday, September 1, to rest at home while they were waiting to get the results back from the many, many blood samples taken. The latest blood tests, ultrasounds, and heart check-ups found nothing out of the ordinary.

I had several doctor appointments the week after being released. I had an appointment with the “infectious disease” specialist, Dr. Mark Gillum. He could find nothing. He, too, agreed that there was something really wrong, but couldn’t find it. The warning he gave was that it might take several months to regain the strength lost over six weeks of sickness. There were more blood tests, and more doctor’s appointments. Dr. Byrd was leaning toward there being some sort of autoimmune disease, possibly Lupus. In Dr. Byrd’s office, they took a number of blood samples, some of which were critical unusual tests to try to pin down more precisely what type of auto-immune disorder I had. The last batch of blood tests cost $1,300.00, and we had no health insurance for any of this. Dr. Byrd, told us one day in his clinic, “Finding the exact obscure strain of autoimmune disease that you have is like looking for a zebra in North America.”

The specialists agreed that I had a very rare form of autoimmune disease, difficult to specify, but that it was incurable. It seems the disease was effecting parts of the nervous system that control voluntary muscle movement, therefore causing a loss of signals which the nerves normally send to the muscles. As the disease progressed, nerve cells that control muscle cells were gradually lost. The disease began at my extremities, and slowly moved up my arms and legs. Somehow, the doctors suspected, either the sensors on my muscles that received the message to “move” were being neutralized or destroyed, or perhaps the message center itself was losing ability to tell my body to work. The result was somewhat similar to Lou Gehrig’s disease. The symptoms result from an autoimmune attack against the nerve-muscle junction, in which the body’s immune system attacks the receptors on my muscles. As the number of receptors declines, the signals sent to the muscles become weaker. The bulk of muscle was still there, but the ability to perform was fading fast. It was only a matter of time until the disease moved to my chest. The heart and the lungs are all muscle. I would then be put on a respirator for a short time, but then there would be nothing they could do. There was no cure for autoimmune diseases. This fast-moving disease would eventually be FATAL — take my life.

The tests and hopelessness continued for a year, without much change nor without much hope. The most hopeful thing our family doctor could say was, “Be thankful for the good days!” My physical abilities and emotional abilities went up and down from day to day like a roller coaster. The longer it went, the less “good days” there were.

Some Sundays I could preach in my church and some Sundays I couldn’t even attend. I missed 62 services in my church. In the services I WAS able to attend, I did not have the strength to play my guitar in worship. I had to sit on a stool behind the pulpit to speak. Away from the church, I was unable to hold the phone to my ear for more than a minute or so, unable to use the keyboard on my computer for more than a few minutes at a time, and unable to walk any distance without the aid of my trusty walking stick.

The first part of the most recent blood tests came back, but they were just the standard tests that most diabetics have to have taken several times a year. All of those tests came back normal. Weeks later the more unusual blood tests came back. Everything was within normal range except one, which was barely elevated.

The struggle continued, with some really good days, and then some days that were a real wipe-out. Periodically I ran a low-grade fever which didn’t seem to have a cause, and didn’t seem to last long. There was a nearly continuous slight headache and ringing in the ears.

In the months that followed the August hospital stays, what we came to call “incidents” became part of my life. An “incidents” was when, without noticeable warning, it was as if a switch was thrown and all my strength would dissipate almost instantly. When this happened, every muscle in my body seeming to go into vibrating trembles, and I would temporarily become a nervous wreck, and lose my equilibrium.

These “incidents” lasted an hour or two and then slowly subsided, after which I remained very weak for a day or two. The “incidents” happened once or sometimes twice a week. The rest of the time, I was pretty weak all of the time. My blood sugar didn’t seem to change when I had these “incidents”. Sometimes, if I sat down for awhile and ate a light snack, it seemed to help recover.

For three months. Dr. LeRoy Byrd gave me a prescription for Prednisone, a steroid, which I began taking on November 23rd. I started out at 30 mg for the first couple of days and then dropped back to 20 mg per day. Prednisone made a great deal of difference in my condition. It did not solve the problem, but did allow me to function most of the time. I improved from being unable to walk 200 yards, to being able to walk a mile. I found my condition to be somewhat like a roller-coaster. On the topside of the cycle I had quite a bit of strength and energy. On the bottom side I was wobbly, shaky, weak, and feeling like my muscles were all vibrating. Sometimes I could drop from feeling good to feeling limp and shaky within a few minutes.

Over that year of diagnosed disease, I struggled along by sheer determination and will-power. I DETERMINED that I would not lay down and quit — and I daily “cracked the whip” over myself to keep moving WHETHER my body thought it could move or not. We continued to remember that God is the “Great Physician” and is OUR HEALER — and was able to heal me in any instant.

So after a year of total muscular weakness, I had been prayed for by big crowds, small crowds, little groups, and individuals. I was falsely prophesied over a number of times. I was told that there must be sin in my life or I would not be sick. I had been prayed for many times, by many different people. I tried to “take it by faith” and all the other pieces of advise we give sick people. But when you are desperately sick there simply is no way to fake it or to step out by faith. You cannot fake what your muscles simply will not do, no matter how you want them to respond. Occasionally, well-meaning believers can unintentionally be very cruel. I was challenged to step right out in faith and walk — which I could not do, though I wanted to. Others questioned my faith, and I questioned my faith myself. I learned some great lessons about compassion, when I was on the “sick” end of things.

I SPENT THE NEXT YEAR struggling with an OVERWHELMING WEAKNESS. I lived in my recliner, in my pajamas. I slept there, I ate there. I often didn’t have enough strength to use the COMPUTER, hold a telephone to my ear, play my GUITAR, or sometimes to lift a FORK TO MY MOUTH! On most days, it was a difficulty for me to walk 50 yards — I MISSED 62 SERVICES at CrossWind Church in twelve months time. When I WAS able to go to church, I moved along the wall, with both hands on the wall for balance. When I was able to preach, I did so from a stool. I could no longer play my guitar in worship, because my arm simply could not hold itself up, but would droop to my side.

Some interest moved to “Myasthenia Gravis”, a chronic autoimmune neuromuscular disorder, whose name comes from Greek/Latin words meaning “grave muscular weakness”. It results from an autoimmune attack against the nerve-muscle junction, in which the body’s immune system attacks the receptors on the muscles. As the number of receptors declines, the signals sent to the muscles become weaker.

I did an internet search on “Myasthenia Gravis” and was amazed at how much it seemed to DESCRIBE ME. My muscle weakness didn’t take the direction of facial muscle weakness (ocular MG), but the description given also said that sometimes it affects the extremities instead. Approximately 15% to 20% of people who have MG have muscle weakness in the arms and legs. My search indicated that in men, MG often occurs in men after the age of 60. The severity of weakness fluctuates during the day, usually being least severe in the morning and worse as the day progresses, especially after physical activity.

Doctors were in the process of considering “Myasthenia Gravis”, as my mystery autoimmune disease. They were scheduling me for a trip to Seattle for something called a “Tensil Test”, because no one in Spokane was capable of administering it.

By FAITH, I told my congregation while I was sick — “When you come out of valley, the DARK CANYON WILL OPEN UP and give way behind you.”

In my next blog I will tell you the story of the miracle ending to this story of my autoimmune disease.  Our God a God of MIRACLES!