The All-consuming Monster
By Teri Van Horn, PWC

I’ve been reading patient stories in the CFIDS Chronicle and want to share my story of CFIDS and how it affects victims and their families.

In October 2000, my daughter fell ill and was placed in one of the premier hospitals in Houston’s world-famous Medical Center . Sometime during her weeklong stay, I contracted a staph infection, but was unaware of it. I kept feeling tired, but passed it off as stress. Being a “super mom,” I was managing a seriously ill child, work, home and five horses.

Two months later—overnight—I developed two golf-ball-sized abscesses in the vaginal area. I contacted my ob-gyn and was seen immediately. Since I had been a perfectly healthy 41-year-old woman, she was shocked and admitted me into the hospital immediately. I stayed in isolation for a week while they found what was wrong.

Finally, it was determined that I had MRSA, a severe staph infection that’s resistant to all but a very few drugs, which must be administered intravenously because of their harshness. So I stopped my daily routine, quit my job and recuperated while assisting my daughter in her recuperation and planning holiday celebrations.

By January of 2001, my daughter was completely well, and I began working and managing my horses again. We show two of them and were campaigning one heavily that year. Two weeks later I developed another golf-ball-sized abscess overnight—this time on my jaw. I went back to the hospital for treatment, including lots of stomach-ripping medications, then went back home and to work.

Life began again. But by May I was exhausted. I was still working full time, but could hardly stay awake during the day. My daughter and I took care of the horses and rode in the evenings, but my once-active lifestyle had me so drained I could barely function. 

I scheduled an appointment with Dr. Joseph Gathe, one of the doctors who had treated my MRSA, to get the infection back in check. Dr. Gathe is a wonderful, open, compassionate man who specializes in the treatment of immune deficiencies and HIV. He told me I was no longer suffering the effects of the staph infection, but that it had most likely compromised my immune system. The next step was to take blood and wait three weeks for test results. 

Three weeks later, I walked into Dr. Gathe’s exam room to discover that, according to my blood work, I was “perfect.” The good news was that Dr. Gathe understood there was a significant problem, although I was beginning to think I was losing my mind. I had written down a list of symptoms I had been experiencing, but which seemed completely unrelated. I was losing my hair, had severe bouts of cramping and diarrhea, got terrible headaches, couldn’t stay awake during the day and couldn’t sleep at night. I felt a profound physical exhaustion that was unlike anything I’ve ever known. I experienced weight gain, numbness in my limbs, extreme lower back pain, inability to concentrate or remember things—the list went on and on. Once Dr. Gathe saw this list, he began formulating a treatment and advanced testing plan. I began taking Provigil in order to stay awake during the day, and he gave me Celebrex to combat the arthritis-like pain in my back and joints.

I continued working—an economic necessity—and spent time with my horses, tried to be a wife and mother, and concentrated on getting through the holidays one more year. On December 26 I had a doctor’s appointment, which was when Dr. Gathe gave me the news: all indications were that I had been suffering from CFS, also called CFIDS. He explained the treatment options (experimental antivirals via IV and/or oral antivirals) and the fact that CFIDS is something that was not going to go away, but could effectively be managed.

Because my health was so compromised at that time, we agreed that if the insurance company would approve it, I would start using the “big guns” and begin taking Vistide in four-hour IV transfusions every two weeks. This was an experimental use for a 20-year-old drug, and I was doubtful my insurance would agree to pay for it. I was shocked and elated when Dr. Gathe’s staff got approval from my insurance company to begin treatment. 

Little did I know that this was the last good news I would hear for a very long time.

Naturally, when I was given the diagnosis, I was devastated. I was 42 and had a husband, a 15-year-old daughter, a full-time job and five horses to care for, and I didn’t have time to take these infusions and rest all the time! I certainly didn’t want to spend the rest of my life feeling this way. Life just wasn’t fair!

I came home in tears and explained things to my husband. I can still remember this conversation as if it were yesterday. This man—whom I had known for 30 years, been married to for 16 years and had a child with—looked at me and said, “So how much is this going to cost me?” No hugs, no “I’m so sorry,” no support. I wanted to die.

My mother and sister were equally supportive. Their diagnosis: I was just being lazy and a terrible wife and mother. I was even told I was doing this just to get attention. Lord, I thought, please let me die from this. I don’t want to live this way!

I wrote a detailed memo to my employer explaining the problem, the treatment plan, my request to take two hours off (without pay) every other Monday for the treatments for two months. It must be noted that during the year I had been working at this company (with the disease undiagnosed), the only times I had missed work were for doctor’s appointments. The day after the owner received my memo, I was given the option to resign and “let your husband take care of you.” I was asked, “If you have to have this treatment, what are you going to do if we don’t give you time off?” I was being blackmailed into resigning instead of being fired. Ironically, my insurance was being paid through my husband’s employer, not mine.

So I had a crippling chronic disease, no job, no emotional support and very little money to pay for treatment. (My husband decided to keep his money separate and didn’t contribute to the mounting medical bills other than keeping me on his insurance.) 

On January 7, 2002, I began the Vistide treatments, which took more than four hours to complete and were torture for a needle-phobe like me. My veins are small and “blow out,” so it takes four to six sticks to get a good one. The medication felt as if it had been frozen just prior to my infusion. Because Vistide is such a harsh antiviral, precautions (and additional medications) must be taken to avoid destroying the kidneys, so I also had to take two huge bags of saline along with the drug. I was in this room freezing to death and making constant runs to the restroom while carrying my IV pole. What fun. (By the way, the staff is awesome and compassionate; they were a lifesaver!) Once the treatment was finished, I was nauseous for the rest of the evening. The nausea is similar to what a chemo-therapy patient experiences, but without the respectability of cancer.

After the first two months I began feeling better, the symptoms decreased, and I began looking for another job, although I had been advised it would be best for me if I didn’t go back to work again. I finally found part-time work. By this time, I had given riding up, but still took care of the horses every day and alternated feedings with a “horse buddy” and his wife to reduce the workload. I quit showing horses and devoted most of my time to working and trying to rest.

I was receiving no support from my mother, sister or husband and was still being told I was just being lazy: “No one is that tired all the time.” I withdrew from friends and social activities simply because I could no longer do what I had done so effortlessly just two years before. It was the end of my way of life and the beginning of a new, isolated and ever-deepening abyss.

Somehow in the spring of 2003, I dredged up enough courage, energy and self-respect to file for divorce. My husband had not touched me physically, or supported me emotionally or financially, since I had been diagnosed. It was well past time to leave and try to rebuild my life.

By this time I was working contract positions for $10 an hour instead of my previous $70,000+ jobs. Only a handful of my closest friends knew of my illness. I felt that it needed to be a secret since I was still looking for a full-time job and because of the negative reactions I received from everyone I had told before. It’s hard to explain how ill you are when you can’t define exactly what’s wrong or what caused it, and you still look relatively healthy. No one believes it.

Call it fate, kismet or accident, but in August of that year I ‘met’ a man online who was absolutely perfect. He loved horses, was interested in me and was interesting to me. Although we corresponded via e-mail for about a month, I had already made up my mind not to have a permanent relationship with anyone because of this disease. CFIDS is an all-consuming monster that destroys my body, mind, soul and bank account. My feelings were that no one should have to be subjected to this burden, certainly not someone I respected and cared about. What a horrible thing to saddle a loved one with!

Although I was quite adamant about this position, he was equally adamant about the fact that it didn’t matter. After seeing each other for a while, I fell completely in love with this warm, compassionate, loving and understanding man. I kept praying, “Please don’t let me get any worse. Let me get better so we can have a happy life.”

In September of this year, we had a fairy tale wedding and a wonderful week in Mexico for our honeymoon. This is where I’m supposed to say that we’re living happily ever after, but that’s not to be. CFIDS won’t allow for happy endings.

I have an IQ of 132, but am working as a receptionist just so I can have a no-stress job. It is killing me. I no longer care for my beloved horses on a daily basis. I’m too tired after working all day. That chore has been delegated to my daughter. I can’t eat at night anymore without suffering from reflux and the threat of irritable bowel syndrome (IBS) attacking me all night.

My new husband, whom I love more than anything else in the world, has just told me that he is unhappy with our relationship. I don’t keep the house clean enough, I’m having to dip into my savings to pay household bills and I don’t have enough energy at the end of the day when it’s “our time.” I often fall asleep unless I’m actively doing something, and he feels I don’t respect him or our relationship enough to stay awake. He doesn’t understand that falling asleep is generally something that is quite beyond my control. 

It’s been four years now since I became ill with this life-altering, life-devastating illness. Although I was in even worse shape in early 2002 when Dr. Gathe and his team knocked the virus down and helped me get back to a limited way of life, those limitations are crushing me. This disease has dealt me a serious financial blow. (Vistide costs $2,500 per treatment; blood and urine tests cost $250 or more each; and my meds are more than $1,500 each month.) The emotional cost has been even more severe. I am working now, but can’t confide how I feel to anyone for fear of losing another job. I’ve given up being with my horses and no longer have friends or a social life. I am estranged from my family, and now my husband is beginning to resent me. I am exhausted and in constant pain and only want to go to bed when I get off work. No one understands this, although they think they do.

What’s next? Working wears me out so much I don’t have the energy to do anything else. I’ve been told that it will take me more than two years to file for disability, but I don’t have a choice, I have to work. Giving up the horses and friendships has been devastating, but losing my husband will completely destroy me.

What can I do? There are only two options—continue pushing and trying to make things work, or give in and allow the disease to win. If I let it win, we’ll be bankrupt within a year. Unless . . . yes, there are other options. Options like large insurance policies that will assure my family wants for nothing if something happens to me. Options like never hurting or neglecting my family again, like allowing them the freedom to live any way they want, no longer burdened by someone who never feels well. Options like never waking up in pain and exhaustion again. Yes, there are many options, and it just may be time to choose which one would be best for everyone.

EDITOR’S NOTE: After reading this story, Teri’s husband has a better understanding of what she’s going through. Teri says her article has opened up more doors of communication between them.