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GARBAGE BAG GIRL - OR BAG LADY

The title says it all. I didn't mean to be a garbage bag girl-or a bag lady. It happened horribly, much to my surprise. You could call it living in a "plastic world", a true horror story without a happy ending.

In the beginning my clothes started to be uncomfortable. Scratchy, irritating, and then there was something strange happening. I was getting actual bites. Naturally I washed my clothes, but it didn't help. Whatever it was seemed to spread at breakneck speed.

All my clothing was infected with something absolutely awful. I checked the internet and the closest thing I could find that matched seemed to be body lice, which live in clothing. I had never heard of such a thing, but it seemed easy to get rid of. Wash clothing in very hot water. I had done that. So I started boiling my clothes.

The problem was that even using a large spaghetti pot you can only fit one pair of jeans in there at a time. And I'm a small person. I spent hours boiling clothes, lugging the dripping clothing down the hall to the dryer and drying them. I did it late at night. I didn't want anyone to know I had lice. That makes you seem unclean.

Unfortunately, all the boiling didn't work. Whatever I had spread to my bed. I was getting stinging bites, that felt like jabs with a red hot needle, all over, all night long. Everywhere, my limbs torso, even my scalp. I couldn't sleep. I moved to the couch to sleep, but they had invaded there too. I thought it had to be some vicious type of bug, so I bombed my apartment with several bug bombs. It seemed to help for a couple of days. Then they were back!

Finally I went to a doctor at an urgent care facility. I had always been so healthy I didn't even have a general care doctor. This doctor saw the bites on my skin. I thought it was strange that he didn't get near me. He stood across the room. He prescribed lindane, which I later learned is a neurotoxin.

I spread this goo all over myself. I thought it would at least keep the bugs away. It didn't. It didn't seem to do anything. That was the first of many doctors. Dermatologists were the worst!

They'd look at the skin, and obviously something was wrong. Then they would tell me to use a soothing cream and to stop scratching myself. Finally, a friend of my mother's, a nurse, looked at my skin and said scabies. She was right. A doctor diagnosed it. Permethrin cream helped. But in a few weeks it was back again.

The doctor said that was impossible. I had scabies for about two years. I was finally able to talk to a specialist in Florida. She told me that the eggs don't hatch for two weeks, and doctors tell you to use it once, then again seven days later. But the eggs are still inside the skin after the seven days. They have another whole week before they hatch. When I used the permethrin cream correctly the scabies was gone.

I had to throw away most of my clothes. They were too infected, caused too much pain. I cried for about two hours when I threw away my grandmother's shawl. She wore it around her shoulders whenever she went somewhere nice. I adored her and loved the shawl because it reminded me of her. It didn't hurt so much to get rid of my bed, couch, and all upholstered furniture.

My car was also infected so badly that I was afraid to drive it. I would be driven to distraction myself, by the stinging bites. I washed the car. Had it detailed. Bombed it. And finally let it die. I couldn't bring myself to get inside anymore. My clothes were a huge problem.

My skin or the environment in the apartment caused them to be reinfected, again and again. Each piece of clothing was washed and put in a separate plastic bag, but reinfection and pain would begin again, rapidly.

That was the start of being a bag lady...

Wearing nothing is awful, even when you're alone. So I cut arm holes and a neck hole in a large plastic garbage bag. It was warmer, covered me completely. One wall in my living room is mirrored tile. I walked over after dawning my new apparel. Not too bad. A thick belt and it could be a shiny black dress.

Well that's stretching it a bit. Anyway, I was already sleeping on a plastic air bed on the floor. And I used plastic disposable gloves because I seemed to spread the infection whenever I touched anything. One thing helped, and that was an enzyme shampoo for lice. It didn't help my infected skin, but it did help clear up the apartment, so that I wasn't getting bites all the time.

I sprayed the walls, carpets, ceiling, inside all cabinets. I covered the entire house every day for weeks. I was exhausted from vacuuming twice a day, washing the floors every day and washing clothes. In the first few years I went through five vacuums. But the exhaustion was not normal.

It felt like I had the flu all the time. I had to quit my two jobs. One was working with children. I was so afraid I would give this terrible plague to someone else. Depression set in. I was being tortured by something I couldn't see. I had ordered so much of the enzyme shampoo that I became friends with the entomologist who ran the company.

I asked him how something so small I couldn't even see it could cause such painful bites. He said that the enzyme they used to penetrate the skin caused the pain. It felt like splattering burning oil on the skin. I wanted my life back. If I couldn't have it back, I could certainly take it.

It was easy to get drugs over the internet. I figured the best thing would just be to go to sleep and never wake up. It was do-able, but I had a sweet dog and I didn't want to abandon her. And my family would be so hurt. So I kept putting it off. I found an internet site where there were others afflicted like me.

After four years some people were being diagnosed with Lyme disease. I got the test. Positive for Lyme and Babesia, a co-infection of lyme. Suddenly doctors were treating me with respect. I was given antibiotics. But by that time, with four years of a bacterial blood infection, Lyme, I was so sick that I was given disability from the state, even though doctors I knew said I wouldn't get it, impossible in California where they deny there is any Lyme disease.

I found I also had entamoeba histolycica, blastocyctis hominis, and toxoplasmosis. Another strange thing started happening. My skin was extruding material. I have no idea what it is. Mostly it is white and fibrous. Sometimes the material is green. Sometimes it is shaped like a piece of rice. Sometimes very round. Sometimes it is brown.

Sometimes it looks like little sticks. And it hurts when it comes out. It comes out of my hands and arms and legs and especially my back. I don't think there is any part of my skin that does not have this material. So I concluded that there is something living in my skin. I do feel movement. And there is a strange type of communication.

If I wipe my neck with a towel sprayed with alcohol, there is an immediate movement I will feel in other parts of my skin. It also gets in your hair, so you have to wash it every night. And it will get in your eyelashes. The stuff falls into your eyes and it feels like scratching, moving sand. I noticed my teeth were decaying and my eyesight was getting worse.

Another horrible thing is that I will infect things I touch. I have ruined so many computer keyboards that now I will never touch one without wearing disposable plastic gloves. Washing the hands doesn't remove whatever it is that is inside the skin. It must be sticky and it must grow because it will get inside the keyboard, and the keys eventually fail to work.

This infection doesn't just affect the skin. I have terrible gastrointestinal problems. I got cancer. I believe my body was just overwhelmed and couldn't fight it off. Ten years have passed. I am totally broke. Spent all money on doctors who dismissed my symptoms as delusional.

Missed most holidays with my family.

Missed watching my nieces and nephew grow up.

My sister wouldn't even let me in her house for three years, so I spent Christmas and Thanksgiving all alone.

I've lost most of my friends, I am afraid to let them in my apartment in case they will get the infection.

I am too sick to work.

I still wear plastic bags.

This disease is called Morgellons...

(Pam, California, July 2010)

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