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
In October 2000, my daughter fell ill and
was placed in one of the premier hospitals in
. 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
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
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
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.