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Sunday, April 23, 2006

A mom struggles to conquer a debilitating disease

A mom struggles to identify, conquer a debilitating disease.

BY KAREN KELSO

THE ORANGE COUNTY REGISTER

I know something is really wrong when I realize the fog I'm driving

in isn't real.

It's a sunny day in October and somehow my brain has disengaged from

my automatic pilot. Everything is white and surreal.

My son, , finally asks, " Hey, Mom, are we lost? "

The word " lost " kicks my brain back into gear.

I don't recognize the tree-lined street. I can't even remember how

we got here.

I pull over, panic rising, and call my husband, Mark. I tell him

that I'm lost, that I don't know where I am.

" How could you be lost? " he asks incredulously.

I start to tell him and realize that I sound crazy.

He calmly tells me to get out the map book and figure out where I

am. As I edge the car forward, I yell at : " What street are we

on? Can you see the sign? " We figure out the street and I find it on

the map. I drive straight home. I go inside and weep.

I try to explain to Mark, and my voice grows hysterical as I tell

him that I couldn't remember how I got on the street. That I felt as

if I were in a fog, even though it was sunny.

This is not me. This is not normal for the very controlled,

energetic on-top-of-everything mom that I am.

I work full-time at the Register as a design editor, a job that's

stressful and demanding. I have to react to the news. My co-workers

and I are constantly on deadline.

At 43, I am a mother of , 9, and , 7. Sam has Asperger's

syndrome (high-functioning autism). I'm Sam's advocate. I'm the

homework checker, the lunch maker, the cleaner, the gardener. I

don't have time to be lost in a fog.

I think back. I have been getting what I thought were herpes sores

on my back for 15 years. It usually happens when I'm overly tired or

stressed. It starts with a tingling, then an itch, and then painful

blisters about the size of a quarter erupt. I never told anyone. I

was embarrassed.

But recently the blisters have been appearing more and more often. I

suffer with them every month for days or weeks after we decide to

move in May. Getting our house ready to sell brings them on. Packing

brings them on in June. Painting for 22 hours brings them on in

July. In August my body has had enough, the pain so intense that I

finally call my doctor.

He's on vacation. Great.

The virus has attacked my sciatic nerve. It feels as if someone has

stuck a hot poker into my back. The pain shoots down my buttocks and

the front of my thighs. Two toes are numb. I see a friend's doctor,

who takes one look at me and tells me I have shingles.

" Herpes? " I ask.

" Yes, herpes zoster. "

I realize that when I was diagnosed, I heard herpes but not zoster.

Shingles are caused by the virus that causes chicken pox - the

varicella-zoster virus. If you've had chicken pox, you can get

shingles.

I'm given prescriptions for painkillers, nerve blockers and stronger

anti-viral drugs.

Then something on my neck begins to itch. A sore forms that starts

to ooze and scab.

Then my neck swells. I feel horrible. I call my doctor,

Blair. He says, " Something is really wrong. We need to do some blood

work. "

And so the testing begins.

The first tests show I have a low white-cell count and no antibodies

for chicken pox. I have Epstein-Barr.

" Epstein-Barr? " I ask.

Chronic fatigue, Dr. Blair says. " Are you tired? "

I laugh hysterically. I feel as if I were born tired. For years I've

been complaining of fatigue. He would do blood work and check my

thyroid, and each time it came back fine. Dr. Blair thought the

fatigue was just from being a mom, which sounded reasonable to me.

People take their health for granted or feel that they deserve it.

What they don't realize is that it's just luck.

I look normal, and so does my son, but we both have a disability. I

think that is hard for people to understand.

A lack of awareness of my illness makes me feel isolated. Co-

workers, family and friends don't understand. Many act as if

it's " all in my mind. "

Everything comes crashing down in October 2004 - the month the fog

overtakes me.

In a week, the basement of our new house floods, leaving smelly,

muddy water in the playroom. We have to put our 12-year-old dog Abby

to sleep. And the new school was not dealing with Sam's autism.

The school is not going to give services just because I say

he needs them. It becomes a nightmare of meetings and bureaucracy.

just sits in class and doesn't participate.

I'm torn between getting a lawyer and fighting for or

fighting the former owner of the house about the flooding. My body

can't deal with both. Worrying about money wakes me up at night. I

could drive my 13-year-old minivan for another five years. I could

tell my friends and family I can't buy Christmas gifts this year.

The fatigue will not go away. I decide I have to reserve my energy

for Sam.

Then I get shingles again.

I'm angry - angry with my body for failing me, angry that I'm tired,

angry at the house for flooding, angry at the school for not helping

my son.

The doctor takes one look at me and says, " I can't relieve the

stress about your son, but I can take ... you off work. "

I feel my world crashing in. I'm not weak. I'm not one of those

people who takes off from work. I don't even believe in chronic

fatigue. This is not me.

I want me back!

I sleep through November. The fatigue is unbelievable. I'm put on a

diet - only low-fat meats, fresh vegetables and lots of vitamins. No

sugar, alcohol or caffeine.

My joints ache so badly that I take steaming baths three or four

times a day. The lymph glands in my neck are sore and swollen. My

mother comes from Modesto to take care of me. She cooks, does

laundry and keeps the house picked up.

One day we garden for a while, and then I try to pick up a small pot

we had just filled with plants. I can't lift it.

I break down in tears.

Mom yells, " Mark, come get ! She needs to get back in bed! " I

crawl into bed and refuse to talk, feeling as if they're laughing at

my fatigue. I'm furious at being so weak.

I live in my flannel PJ's for months. One pair says " Glamourland " on

them. I didn't feel very glamorous. The others are sprinkled with

martini glasses. I wisecrack, " This is as close to a martini as I

will get. "

My children are in heaven that I'm home. loves lying on the

couch, watching movies with me. But she doesn't understand why I'm

so tired.

Mark has to do everything. I feel guilty. I was the doer, the Super

Mom. In my once spotless house, the carpet stays spotty and dirty.

The laundry piles up. Toys litter the floors.

The doctor does test after test. The results are much the same. Low

white cells, no antibodies to the chicken-pox virus, and evidence of

Epstein- Barr. I feel as if I'm on a bad ride that I can't get off.

In December, Dr. Blair says gamma globulin might stop the cycle. But

I need to find an immunologist who has some. I finally get in to see

Dr. Leman Yel three months later, the week before I am supposed to

go back to work. I feel guilty that I haven't figured out what is

wrong with me.

Dr. Yel says she needs to do more blood work. I stare at her in

disbelief. I feel as if I've been drained dry doing tests. Why more?

She wants to see how my immune system works in detail. I have no

choice.

Back at work, people ask, " What was wrong? " I try to explain but

flush with shame and can't meet their eyes.

Dr. Yel's tests come back the same. She tells me she wants to give

me a pneumonia vaccine. This will show if my immune system is making

antibodies.

Overnight my arm swells and turns purple. On day three I am making

fun of my Popeye arm to the kids. I have flu symptoms.

Dr. Yel tells me that, of the 14 antibodies I should have made to

the pneumonia vaccine, I only made four. So I ask, " How do I get my

body to make antibodies? " thinking she can give me a pill or a shot.

Then the diagnosis comes.

This is what I've been waiting for, right? But do I want to know?

Suddenly I'm trembling with fear.

" CVID, " she says.

" What is that? " I ask.

Common Variable Immune Deficiency.

In the United States, more than 1 million people suffer from one of

100 primary immunodeficiency diseases. Our bodies don't make

antibodies correctly, so we don't fight infections.

I will need intravenous infusions of gamma globulin, which replaces

antibodies (the proteins that help white blood cells fight and

destroy germs).

Dr. Yel will have to write for authorization, and I will have to

wait. I feel as if all I've done is wait. Primary immunodeficiency

often goes undetected and untreated. It takes most patients nine

years to be diagnosed because the symptoms are not unique.

The doctor says Epstein- Barr, with its crushing fatigue, isn't part

of the immunodeficiency. So it seems I have two things. I feel

relief because at least now I can tell people what is wrong, even

though I don't quite understand it.

I start to do research, and slowly my childhood starts to make

sense. At age 1, I almost died from s syndrome, an

allergic reaction to a sulfa antibiotic I took for an ear infection.

I had constant ear, nose and throat infections.

When I hit puberty, my body was covered with hives. At one point, I

was limited to six foods. I had allergy shots for 18 years. My

immune system has been faulty from birth.

I am not a hypochondriac!

My insurance authorization arrives for infusions of gamma globulin,

and I whoop with joy. I schedule with nurse n Ioli for my first

infusion. She lists possible side effects - headaches, backaches,

flu symptoms, anaphylactic shock.

I wonder if I will feel better or worse. The first infusion takes

about five hours.

A chill settles into me that evening. I climb in a screaming hot

shower. I can't stop the shakes. I call to Mark, who puts me in bed

and bundles on extra blankets. My entire body is in motion. I have

experienced my first side effect.

My first two infusions, spaced a month apart, don't help. I am still

fatigued. Then, after the third one, my world changes. It feels as

if someone dumped coffee into me. I have energy. I am ecstatic.

Friends see it in my walk, my face, my attitude.

Then n calls to cancel my next infusion. UCI has no gamma

globulin. I hang up the phone in disbelief. Now I know how a drug

addict feels. I have to have it. I don't want to slip back into the

fog.

I'm thrilled when n reschedules me.

The infusion lab becomes a quiet refuge. I get used to the beeping

IV machines. For five hours, my cell phone does not work and I'm

surrounded by people who understand me.

n flits about the lab, taking our blood pressure, checking our

IVs, listening to us talk about our symptoms, our families, our

lives. Patients come from as far as San .

My bosses ask me to get a doctor's note confirming my illness every

month. Recently, when I went back to get the note, Dr. Blair

said, " What part of 'the rest of your life' does your employer not

understand? "

It was as if a book had been slammed shut in my face. He was telling

me that I'm not going to get well.

I have been open with people about my illness, but I am often asked

questions that sting: " Do you have HIV? " " What are those infusion

thingies? "

I do not have HIV, which is an " acquired " immune deficiency. Primary

immunodeficiency is genetic. Many PI patients can have long periods

of health and then suddenly be felled by illness. Anticipation of

the next illness can fill healthy periods with great anxiety. I have

grieved, been angry and felt uncertain about my future. Will I be

able to lead a normal life? Will my son, who also does not make

chicken-pox antibodies, suffer through years of illness as I have?

Will I be alive to see my grandchildren?

When I talk to other patients, I find I'm lucky to still be working.

Many patients retired. Some were forced out of their jobs. Some work

when they can.

I've taught my children to be vigilant about washing their hands. At

times I won't kiss my husband. I live in fear of viruses.

The biggest lesson I have learned, living through this, is that I

must pace myself and take care of myself. If I don't, I can't care

for my kids, my husband or my job.

I am not perfect. I can't be a Super Mom. At times, I have to

say " No. " If I do too much now, it can take days for me to bounce

back.

The cost is not worth it.

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