It is a long, windy road that we porphyriacs travel. Mara and I met when she posted a message on the Porphyria Chat Page and I responded to it. Since then, Mara and I have become great friends and I thank her for allowing me to share her story with you.

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May 1995

Nineteen years since high school and I'm finally graduating from college. I have an accounting degree! I take a couple of more classes and I have an AA in marketing and management! I made the Dean's list the first semester and the President's list the last four. I got a tuition scholarship because my GPA was outstanding. My family is so proud of me! What a great example I've set for my kids.

How ironic, I can't even remember the simplest tasks on an adding machine today. I can only find jobs that pay minimum wage. I try to help my daughter with her math homework and she thinks I am an idiot. I went to get a cup of coffee this morning and couldn't remember what I went in the kitchen for.

September 1995

I forgot about the appointment at the doctor today. What is wrong with me? Grandma Sally has that Alzheimer's disease. I think about that a lot lately, but I know I'm too young, I'm only 34. It must be stress. People forget things all the time. It's nothing to worry about. I have to remember to call mom today and see how Grandma Sally is doing. I am so glad the stomach aches went away before Mark and I got married.

Got a job working in sales for an AT&T reseller. My supervisor asked today why I stand up at my desk. She was okay with it when I told her I eat less CODEINE when my back hurts less. I got so sick to my stomach this afternoon. Come to think of it, I've had a headache and flu like symptoms ever since I started working here, and the stomach aches are back.

Mom called last night and said it's time to come home. Grandma Sally is not expected to live more than a couple of days. Papa moved in with us about a month ago. Doctors say Papa has three months left. Mark is working nights now so someone is always with him. Marilyn fell in love with Papa first time she met him, so she's real glad he's here. Papa is glad too because he can go sit out by the pond and fish any time he feels like it, and we never run out of ice cream here. I have to make the train reservations for California.

I do believe I just had the worst day at work I could have possibly had! My supervisor was angry all day. I told the gal next to me that her perfume was making me sick. I was becoming physically ill! So the gal sprayed Lysol room deodorant and said, "There, does that smell better." Three of us had to go to the break room we were so nauseated. Hours were lost and morale went way down. Then my supervisor comes up to me and tells me, " Your mom just called, and you need to call home." Grandma Sally died. My train doesn't leave until tomorrow.

November 1995

Papa is getting really bad. He needs to go back to Omaha so he's closer to the hospital. Mark is taking family leave. I don't have any vacation or sick leave. I don't know what's wrong with me lately. I just don't feel right. Smells are so intense. The headaches come all the time now, I wake up with them, I go to sleep with them. I've had diarrhea for a couple of months. My guts are tearing me up. Doctor doesn't seem to know why. He keeps telling me I'm under stress. No kidding. The heart attack last year, hmmm, doctor said that was stress too. I'm too young for this. How come I've always been strong as a horse all my life, but sick all the time? Better keep up the payments on the insurance!

December 1995

I'm waiting for Mark to come home from Omaha for the weekend. He has been staying at his sister's house with Papa. There has always been a sister or Mark with Papa since he went back to Omaha. This is the first time Mark has left his side for weeks. It will take about four hours for him to get home. How do I tell him Papa died a few minutes after he left? How am I going to tell him we have to go back to bury his father? Oh, Papa. I'm so glad you don't hurt anymore. I'm going to miss you so much.

Two funerals in two months. Okay, I can see where the supervisor would have to think I might be making it up to get out of work, but she knows me. She only lives a mile down the road. Our kids play together. She wants to see a copy of the obit? I'll shove a copy of the obit right down her throat. I've had it! I don't feel good, and I don't like telling people all day about "how much money they'll save," and I'm just plain tired of it!

Mark has been feeling lousy lately, and Marilyn had to go in to see the doctor today so I asked him about Mark while I was there. Dr. Dan brought out photos that were taken when Mark had a scope done last August. Dr. Dan tells me, (in his best Vietnamese accent) "You see this lesion here, this cancer." Well, drop me on the floor. "What the hell are you talking about?" No one said anything about cancer! Esophageal cancer! No way! Mark says he can't go to the doctor anymore until after May because the new insurance has a preexisting condition clause. I call the insurance company and they say Mark had a prescription for Zantac one month before the insurance went into affect and if he had cancer the doctor who did the scope would have said so in his report. The claims agent tells me to keep appealing just in case so the insurance will have to go back and pick up all costs later. I am so mad. No wonder Mark's mood has changed so much. How dare me get sick right now? Why didn't he say anything to me? This couldn't happen at a worse time.

I filled Marilyn's Zantac and some other prescriptions today. Got to get it all before the insurance goes. Might be a while before I find a job again and Mark's insurance picks us up. The stomach aches are so bad again that I am glad I lost my job. I just want to sleep all the time anyway. It will probably be like before. The pain will just go away. Marilyn is getting dizzy alot lately like I used to when I was her age. She gets headaches and the doctor says the Zantac should be keeping her "ulcer" under control. How does a 9 year old girl get an ulcer? I know times were pretty scary for her a couple of years ago, but I never discuss it in front of her unless she wants to talk about it. And Mark has been such a great daddy. Mark is probably the reason she is not as bad as she used to be. The Zantac is $210.00 per bottle. Mark's insurance will call it preexisting for a year but she's got to have it.

Page 2 of Mara's Porphyria Journey - 1996
Page 3 of Mara's Porphyria Journey - 1997

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Created December 9, 1997 by Cheryl Ann