January 1997

I can hardly believe it! The Post Office called me for an interview! I've been taking the postal exam for years! I finally scored low enough for them to call me! Mark is thrilled. I know he's tired of me having a good time at work. (I know that's not the case now, he's genuinely concerned about my health.) The job is permanent part time, as a rural carrier substitute. I'll have the same route every time, but only work on the regular carrier's days off and during his vacations. I won't have to quit the shop or hire someone to be there when I'm gone. The deal with Bill can go through, and in about 10 years I could bid up a full time route, sell the shop, show a nice profit, and be set! I always get my hopes up. Let's just figure they will call and tell me they picked someone else for now.

February 1997

I am getting these absolutely bizarre bubbles on my hands. They are the size of nickels and when they bust open, it's like they are filled with acid! My hands look like hell. I don't remember welding without my gloves on, but it looks like slag burns. It looks gross. The blisters that have been busted for awhile won't heal. The skin on my hands is like toilet paper. It just peels off. It doesn't seem to matter what I do. My hands are falling apart. It has to be some sort of chemical reaction. I haven't been able to hide it for weeks. I haven't been able to wear my wedding ring for weeks. I thought I was going to have to get it cut off. I can't believe the size of my fingers. They are huge. Eric picks up a lot of the slack at the shop now and even Mark comes in to help me get caught up on weekends. My abdominal area feels like I am being stabbed and then, while being stabbed the knife gets twisted. I am not going to the doctor this time. I am going to get some pain meds. I can't work like this.

March 1997

I know I look awful. I am growing a mustache and hair around my chin up to my ears. It's real noticeable on the sides of my face. I must have some metals poisoning or a hormonal thing is happening to me. Eric said I look like I have leprosy. I didn't think it would bother me, I really went off on him though. It's almost like my skin is melting. I keep thinking it will go away. I just get worse everyday. I have full blood work scheduled at Dr. Janet's office. I told her I want metals testing, hormone levels, and the works.

My metals came back normal. Nothing is wrong with my hormone levels. Janet says I have an elevated liver count. And she wants to test for Hepatitis. Mark is having our water tested and Bill's wife, Karen is sure there's some contamination in her water from our paint. Marilyn is having the hepatitis testing done and Mark's has already come back negative. I am so sick. I go to work every day, but I don't really know how I make it through the day anymore. I guess I really love my work. I can't add up a work order anymore. I am an absolute nut case. How could I have Hepatitis and Mark not have it?

Marilyn's test is negative. Mine is inconclusive. Back to square one. I missed work today. Actually I went in, but I came back home. All I want to do is sleep. My hands hurt so badly. They are so ugly. The post office called and training starts next week. I have to go to Lincoln for a week. The post office is paying for everything. They even pay your hourly wage for driving time to and from training. I've reserved a room at The Plaza. It's supposed to be real nice and since they are paying I figure, why not get the best. I can use the rest and the post office can raise their stamp rates next year to pay for my trip. Your government at work.

April 1997

Five days of training to deliver mail. Wow, I guess it must be "complicated"....NOT. I pulled into The Plaza and checked in. When I went back to the van to get my bags I had a flat tire. I am so glad it didn't blow on the interstate. The tire is completely shredded. Damn lucky if you ask me! I've been in Lincoln for two hours now and already spent $400.00 for tires. Mark will be so proud of me! The indoor heated pool and Jacuzzi are looking mighty good right now. Class starts at 6:00 a.m. and so I should eat and go to bed.

I got people asking me about my hands today. I didn't know what to say so I just said I was welding without gloves. One guy said, "That sounds pretty stupid." The women said, "It looks like it hurts." It was a pretty stupid thing to say but I think it would of sounded even more stupid to say, "I don't know what's wrong with them." Class went great except all the writing. My hands are so swollen and they are bleeding so much I will have to bandage them tomorrow.

It's 4:30 a.m. I get my wake up call and get up. I take a shower and then start getting ready for the last day of class. I am standing in front of the bathroom mirror when I see it. My God! My face! The bubbles are all over my face. There are spots where the skin is just hanging there! Blisters all over! I go into the bedroom and call Mark. It's 5:00 a.m. I am hysterical. There are yellow stains all over my pillow and I can see pieces of my skin stuck to it. Mark is so great at calming me down. He says to clean up and pretend I am the only one who notices the blisters. "Are they real, huge big?" Or do they just look that way to me? Yeah, I can go to class. I've been waiting for this job for too long to blow it. Mark will make an appointment at Janet's for tomorrow.

More tests come back negative. The liver count is very high. Janet says she doesn't know why. Just stress probably. Stress my ass! Mark finally tells me something that makes sense. It is on my skin. I should go to a skin doctor. Why does my body hurt so badly? Right down into my bones I hurt. I feel like I am dying. Like maybe no one will find out what is wrong with me until the autopsy. I hate feeling like this. Something is getting real bad with Mark too. I know he's been feeling crappy, moody, maybe even depressed. I wonder if he knows something that he hasn't told me.

Mark spends a lot of time with Marilyn lately. They go shopping a lot together. I don't feel like going outside. Every time I go outside, I get dizzy. Mark and Marilyn clean the house, do the yard work, take care of the animals, and do all the cooking. I am still going in to work and I still think I must be having some sort of chemical reaction from the paint. My guess is the metallics, or the pearl I couldn't match a few months ago. I had to mix that pearl about 10 different times. The idiot at the paint store put the wrong code into the Prophet. I messed with that paint alot.....wondering.....and so grateful to my family for putting up with this craziness.

My hepatitis test is inconclusive again. Our water tested out great. I thought there would at least be traces of pesticides in it. The water at the shop tested out even better than our water. I guess they have a deeper well at the shop. The dermatologist will see me tomorrow. I hope he can figure out what I have wrong with me. I have never been so miserable. I feel so ugly. Mark went to the doctor again and at least got something for the pain. I am starting to worry that it really could be cancer. Mark, I believe, is convinced he has cancer. I love him so much. I don't know how I would get through this without him. I don't know how I would have gotten through the last five years if I hadn't had him by my side. These last years have been real tough. Maybe all of my problems are stress related, but I doubt it.

April 25, 1997 - Dr. "D" is about 18 years old or at least looks like he's that young. I am very excited. He asked me to show him my hands. He looked at my face. He asked me if I noticed anything else, like dark colored urine, or hair growth. I was floored. I told him that I originally went to the doctor because I had hair growing on my face and I thought the hair and the abdominal pain meant a hormone change. I told him that my urine was the color of port wine on some days and just darker than normal on other days. I told him that on top of everything else I thought I had blood in my urine, but assumed it was from an old injury and hadn't paid much attention to it. Then he said, "I think I know what you have." He asked for a urine sample and I gave him one. Then he asked the nurse to find a black light like the lights that make those psychedelic '60's posters glow. Then he showed me my urine under the light. It was glowing, swirling. He said, "What you see are porphyrins. You have Porphyria Cutanea Tarda."

Dr. "D" ordered a 24-hour urine test. And he told me my treatment was archaic and would be starting immediately. He said he had never seen a case of "Porphyria," but had learned a little about it in medical school. He said that it was a very rare blood disease and can be acquired or hereditary. He said it is often called "The Vampire Disease." He said that the chemicals at work could have triggered it, drinking alcohol can intensify it and if I didn't stay out of the light I would get worse. He said that I had to have 500 ml blood draws every three days for the next few weeks in order for the porphyrins to have a reason to live other than attacking my face, hands, and liver. He called the treatment "Therapeutic Phlebotomy." He said I would be cured in six to eight weeks and could probably go out in the sun before summer was over. I asked him if it would be cheaper to raise leeches? I felt like I had an answer and went home feeling pretty good about myself.

May 1997

I went through phlebotomy like a little baby. The 16-gauge needle scared me so bad the first time I almost vomited. I got very light headed after the first session. I went back to work afterward and passed out. When I woke up, Bill had called Mark to come and get me. I was ashamed I couldn't even have a little blood draw without ruining Mark's day. Mark was mad because no one told me I needed to eat and bring some orange juice with me. I slept for a few hours after I got home and then I was fine. I did this for three weeks and was finally so exhausted that I told the doctor I couldn't take it anymore. The draw was lowered to 250 ml. I was still wiped out and I didn't see any improvement. My test result from the 24-hour urine showed the porphyrin levels were elevated and confirmed the diagnosis. Although I complained about the abdominal pain, Dr. "D" said that had to be something else. We would continue with the phlebotomy treatments.

Marks year is up now and insurance will pay for him to have more tests run. I am so glad. He has been so sick. I have asked him several times if I should pack up and go. He can do so much better than this. I am a monster now. I look like I have movie make-up on and I can't think any more. I say the strangest stuff out of the blue. I can't sleep anymore. I am up all night looking in the mirror. I cry constantly. I am sure I am going crazy. The bubbles on my skin keep coming and Dr. "D" says the blisters on my face are "acne." I've never had a zit that looked like this! I can't even dress myself; my hands are so torn up. I have taken a leave from the auto body shop and haven't put out a car in weeks. I get out once every two weeks to deliver the mail and by the time I get home I am in bed for two to three days. I hit my hand on every mailbox I come to. I can't hold the letters. My new Blazer breaks down every time I go on the route. The Blazer goes one day on the route and two weeks in the shop. I used the van last week to deliver the mail and the transmission blew. Maybe I am getting a message from God. I know the dogs like me to be home, so they can come in and out of the house whenever they feel like it. Mark likes me to be home, because he thinks I am getting sicker. Oh, why is this happening to me?

June 1997

Mark has a hole in his esophagus and a valve that is messed up. New pictures show that the "cancer" Dr. Dan showed me was simply a bad piece of film. "Yes," Mark tells me he has thought for over a year now, that he was going to die from cancer, but refused treatment until insurance kicked in because he thought we would lose our house! He thought I'd rather have the house than him! I am crying while I write this. This is the first time I have cried in days. I am so sorry I got sick while he was going through so much emotional terror. I should of known. How could I be so self absorbed? Surgery is scheduled in Omaha for next month. Mark is going to be all right! I will never be able to explain how I feel. He is insisting that I think about quitting the post office and pulling out of the body shop deal. Bill keeps on saying he thinks I'm having a bad reaction to a new detergent. Bill always makes me laugh.

Marilyn is scared because Mark is having surgery and she thinks when he is opened up the doctors WILL find cancer. Marilyn has been through alot these last few months. Her stomach is hurting her so bad lately that she takes her Zantac without even being told to. I wonder if she is getting close to starting menstruation and maybe that is why she hurts more now? I have piles of stuff to go through about porphyria that Mark has gleaned from the Internet. He tells me there are even pictures of hands that look just like mine. He says the symptoms lead him to think I may have a different type of porphyria though. Soccer season is over now and I have made arrangements for Marilyn to spend 10 days with her biological father in California. Then she will fly to Las Vegas and spend the rest of the summer with Wendy. Marilyn loves Wendy and she doesn't need this craziness. I can't even take her swimming.

I have called a doctor at the Mayo Clinic. He works in the porphyrin lab. He says to tell my lab to do another 24-hour urine and a 24-hour stool test. He says to open the book and show them the page with the instructions from the Mayo Clinic Catalog. He has me write down the instructions to make sure the lab follows exactly the Mayo protocol. I do this and the lab here doesn't want me to tell them what to do. Dr. "D" says he didn't order these tests. I say call the doctor at Mayo! This is my body! You will do what I want! Dr. "D" is not paying for this, I am! For Christ's sake, Dr. "D" thinks this crap all over my face is acne!

When my results come back this time they go to Dr. "D", and he won't show them to me. He just says, "You have Porphyria Cutanea Tarda." I am not satisfied. I want this to go away. I want to go swimming with my kids. I want to get back to my life. I want to help Mark through his ordeal. I tell Dr. "D" I am going crazy and the guy says I am being a bitch! Well, NO KIDDING! Did he think I didn't know that? I can't go outside without a goofy hat and pair of gloves on. My eyesight is failing. My blisters are not going away. I am drained all the time. I feel like a pincushion, and I was told this would be gone in six to eight weeks.

I called Dr. "D's" office today and spoke to his nurse. I told her I need copies of my test results. She sent them to my fax. The first thing I notice is the notation at the bottom. It says that my tests show indication of HEP or PCT and that further testing should be ordered. I'm sitting here thinking to myself, "What in the world is HEP?" I called the doctor at the Mayo lab and he tells me, I have two kinds of porphyria, Porphyria Cutanea Tarda and Hepaticerythropoietic Porphyria. Probably both parents are carriers of a gene for different types of porphyria. Have I got any family members with the same symptoms? Has phlebotomy helped yet? NO. I told him about Dr. "D" not listening to me. I told him about the abdominal pain and my brain going numb on me. The doctor at Mayo says I would be welcome to come there and see him and get the services of the Clinic, probably at less cost than I'm paying now.

August 1997

I had an accident today. About three days ago, I had told my supervisor there was a road on my mail route that was under construction. Signs on the road advised the road being closed to through traffic. I had told her about this road and another road I was having trouble with. I asked her if I could divert and take an alternate route to deliver the mail. She yelled at me and told me, "If you don't want to do it, I'll find someone who will." When I told her how bad one stretch of road was, she yelled, "I don't fix roads!" My "Union Rep" told me I should keep my mouth shut. Everyone who has ever had this route has driven it fine. I told her, I would keep my mouth shut from now on because I didn't want to lose my job, but when I was in training I was told to report ANY hazardous condition to my supervisor. The Union Rep told me to ignore the "crap" they taught me in training.

When I got to the stretch of closed road today, it had been raining and the road was real sloppy. I moved back over to the driver seat, and put on my seat belt. I was doing about five miles per hour when the Blazer started to slide. I could not correct the slide and the truck started to spin. I tried turning the wheel back and forth to get a grab on the road slop, but by that time I was airborne and flipping upside down. I ended up in a ditch full of water and tall grass. The windshield blew out, the top was caved in, and the engine was still running, the mail was everywhere, and I was upside down.

I got out through the tailgate, or what used to be the tailgate. There was glass everywhere. The engine was still running. It was starting to rain again and there wasn't a house for at least half a mile. The truck was filling up with water fast. I pushed on the truck real hard to see if it was steady and then I crawled back in and started throwing the mail up onto the road. My spare tire had fallen over onto a jug of motor oil. It was mixing with the water. When I pulled packages out, water would pour out of them. It took about 45 minutes to get all the mail out. Then I saw a figure way down the road getting his mail out of his box. I started to scream, "Help Me!" I know he couldn't hear what I was yelling, He couldn't see the truck down in the ditch. He went back in his house. It had been about an hour since I wrecked and not one car had gone by. I was soaking wet, cold and, finally started to hurt. I touched my arm and tried to move my arm and the pain made me scream. I had Codeine in my purse and ate some dry. Then I started walking to the house where I had seen the man, and knocked on the door. When he answered the door, I told him I was the mail carrier, I had wrecked, would he call an ambulance, and would he call the post office so they could come and get their mail? The guy freaked! He let me in and I made the calls. Then I told him I had to go back to the mail. "I have to protect the mail." He gave me a ride and we slid all over the road even with the 4-wheel drive engaged. The man was really mad. He said he had told the county several times to fix the darn road, but it had been like this at least three months. A fire truck came down the road and slid. A sheriff car came down the road and did a 360 slide. The ambulance showed up and I got out of the nice man's truck and the paramedics loaded me up. The sheriff stayed with the mail. I was afraid the ambulance would wreck with me in it.

When I got to the hospital I told the nurse I had porphyria and there are drugs that can hurt me bad. I asked that they get a hold of Mark and get him there as soon as they could. I was taken to x-ray and found to have dislocated my shoulder. The ER doctor treated me like I had the plague. I later discovered that the scabs on my face from the porphyria looked similar to the face of a speed freak drug addict who picks at their skin in search of imaginary bugs. I had asked for something for the pain over and over and the ER doctor kept saying, "IF you have porphyria then you know you can't take ANY drugs." I told him and the nurse over and over to just hand me my purse and I would take some of my own prescription. This is when they decided I was a drug addict and a speed freak.

The next day I had to go back to the doctor and Mark and I stopped by the hospital and talked to the ER director. She is the wife of one of Mark's best friends! We showed her the safe/unsafe drug list. She said the ER doctor on duty the day before would be reprimanded and the list would be kept on file for future reference. I will make a stink about this at a later date, when I feel better.

August 18, 1997 - I went back to work today. When I walked in my supervisor told me how glad she was that I came in, she had something to tell me and would rather do it in person. She fired me. Maybe God is trying to tell me something again. I'll fight her firing me. It doesn't seem right. The accident would have never happened if she had listened to me when I reported the hazardous road, like I was told to do in training!

Marilyn came home from Las Vegas yesterday. We paid $56.00 extra to have her flown to the little North Platte airport. I don't think I could have driven to Denver to pick her up. I am really glad she is home. The day after she got home Mark, Marilyn, and I drove to Omaha together and we left Mark there. He was scheduled for surgery Friday, but the doctor wanted to do the scopes over first. I had to come home so Marilyn didn't miss any school. The doctor said he'll be out of it for a couple of days anyway and I won't do any good being there. I know all of his sisters and his mom will be there if anything happens. Leaving him is the hardest thing I can do right now, but they are all right, I don't need to be there. After school on Friday, Marilyn and I will drive back to Omaha.

I took Marilyn with me to see the traveling wall. I spent the afternoon crying. I think Marilyn learned a lot by going. She learned about the massive amount of senseless death. She heard the familiar sound of her mom crying for no particular reason. Now she knows. Now she can remember too. I want to leave for Omaha now to see Mark but I can't see at night anymore. I have a pair of glasses but I see stuff that's not there. I know it's this porphyria making me see stuff. We'll leave in the morning.

September 1997

I'm taking Clonopin now. It's supposed to make me feel "normal." I eat an awful lot of Codeine now too. Bill and Eric have come over to see me twice. I go for phlebotomy twice a week now instead of every three days. I have Mark take off work so he can drive me. I insist they take the whole 500 ml every time so this porphyria will go away faster. I stay in a dark house except for when I go to the hospital. I took doughnuts in the other day. I think it made the lab tech think I was a nice person instead of such a freak. I know everyone who sees me is totally grossed out by me. I stopped going to Marilyn's soccer games back in June, when I noticed she was embarrassed by me.

Mark found another safe and an unsafe drug list on the Internet today. Clonopin is unsafe and is supposed to cause attacks or something. Is that what this is? An attack? He wants me to get out and use the computers at the library in town to see if I can find anybody else out there who has porphyria. My mom sends me stuff all the time about porphyria. She is convinced she has it too. I would really like her to get tested. I have always thought there was something wrong with her. I am sure this porphyria is what Nana had. There is the link! That is how I could have two types. I think I've read that phlebotomy is not good for one type though. I'm not sure. My brain just isn't working right. I feel so alone all the time. I am so ugly! I just want to crawl into a hole and hide.

September 22, 1997 - Today I got on the Internet at the library and found a site called Cheryl Ann's Porphyria Page. The page had a button to click on that went to another page where people who have this disease leave "messages" for each other. I put in a "message" too. I asked if anybody could tell me anything? I needed some answers. I don't think it was more than 15 minutes that went by before I noticed a response from a lady who called herself "Rowina." I was so excited. I told her a little about myself and she told me that when I could come back to the library to make sure to check in. I can't remember the conversation exactly but I do remember the feeling of relief washing over me. Relief that I wasn't the only person in the world with this crazy disease. I couldn't stay too long because the light was causing my hands to turn bright red. I asked the final question, "Will this go away, will I ever get better?" Then I came home.

Mark has been copying the "chat page" every night before he comes home from work. I was so happy to see "messages" written to me from people who have this porphyria. A guy named Ron says, "Yeah, it does get better, and it also gets worse." He says that his "attacks"" come less frequently as he gets older. He says his insurance maxed out when it hit 1.3 million dollars! But he is reassuring and I feel better just knowing there are people out there who know what I'm going through. I found out there ARE several different kinds of porphyria. I found out there are ways I can get electronic mail to keep in touch with these people. I just hope I can get back outside before they forget who I am. I think Marilyn has porphyria. There are other kids out there with it. Dr. "D" told me it only hits adults between the ages of 35 and 40. Dr. "D" also told me the abdominal pain is not a symptom. Mark has brought home the entire history of the chat page and I have so many symptoms. I have symptoms that Dr. "D" says, don't exist; acne, that only he can see. I think I will have to find a way to make Dr. "D" nonexistent.

I read through the "history" all the time now, highlighting things I want to talk about with Dr. Janet. I told Janet I don't want to go back to Dr. "D" . I'm still mad that he called me a bitch. My mom told me I should tell him I was a bitch before I met him! Janet says he is the only dermatologist for over 100 miles and he will be the guy that helps get rid of the scars. I will keep my appointments, but I don't have to like him.

I looked up porphyria in the card catalog and got the only book on the subject while I was at the library last week. The book is about a lady with "Porphyria, The Vampire Disease." I wonder if it's called the vampire disease because of the blood draws or because I can't go outside in the light? Either way the book scared the crap out of me. It says the feet get blistered so badly that they swell up and bleed and the same thing happens to the torso. Now I am waiting for my feet to swell up and fall off.

September 25, 1997 - There is a "message" from Wipeout for me today. It says that she was diagnosed with PCT too, but actually had Variegate Porphyria. She says the phlebotomy isn't good for VP. She says it is very important to get a definite diagnosis. She says she would like to talk to me more. Her "message" is signed, "Cheryl." I wonder if she is Cheryl Ann?

September 26, 1997 - Mark put up a "message" for me today asking if anyone can find any information about HEP. No one knows anything. Or there hasn't been anyone there today who has that type of porphyria. I'm not sure. I have found one paragraph about Hepaticerythropoietic Porphyria and it doesn't say anything! All it really said was that this form of porphyria is quite rare and has been described in only about 20 patients. It is the homozygous form of uroporphyrinogen decarboxylase deficiency.....that's where I lost it. I didn't know what to think. Mark cries with me now. He asks me why I don't cry more often than I do. If he only knew what I did all day long while I am here, all by myself, in the dark, day after day, after day, after day.

September 27, 1997 - There is a "message" today from one person answering another that says, "Tish, if your blood is really iron rich, then your original diagnosis of PCT was probably correct. People with VP do not have the problem with iron rich blood.....they may have assumed your blood was iron rich when they diagnosed you with PCT. That is how I ended up anemic.....from the phlebotomy they were doing on me while they thought I had PCT before they tested me for VP." VP is an acute porphyria. Real name, Variegate Porphyria. There are several types of acute porphyrias. I'm thinking maybe since I have always been so anemic, and the phlebotomy hasn't done a thing except wipe me out and symptoms including the pain, are consistent with the acute porphyrias, I must have been misdiagnosed too, and I have an acute porphyria. That would explain everything. I bet they even have a cure for it! I've just been looking at the wrong type of porphyria all this time!

October 1997

October 9, 1997 - Unbelievable! Mark came home from work today and pulled up to the front of the house. He always parks out in back and comes in the back door. Something strange was going on, but I didn't know what to make of it. Then he started unloading boxes out of the van. Big, huge, black, and white cow looking boxes. One after the other. Into the living room the boxes came. The boxes say Gateway 2000 on them. There is a monitor, a computer, a printer, a speaker and sub-woofer system, a keyboard, mouse, and microphone. There are piles of software, and tons of stuff already loaded. Unbelievable! Mark says he got the system for me so I can find out everything there is to know about porphyria. I can talk to the other people who have the disease. I can maybe, find a doctor who knows something about the disease. And he says I won't be so lonely if I have something to do during the day. The power plant where Mark works financed the whole system at zero interest and they are taking a payment out of Mark's paycheck every two weeks. I am so happy that I don't even know what to say. What a great gift! What a great husband! I am truly blessed to have Mark.

My first day with the computer all plugged in, in all the right places; I got to the site I had found at the library. I left a "message" that said simply, "I am back. Is anyone there?" No one answered.

Mark brought home an e-mail from Wipeout with the password to get into her chat room. I got to talk to Wipeout. She is really a neat lady! I know we will be friends. She has Variegate Porphyria. Funny thing about her type of porphyria and my type of porphyria though, doctor says I have PCT and HEP, but Wipeout's symptoms are EXACTLY the same as mine! I don't just mean the symptoms are similar. I mean the symptoms are exactly alike. You would think we were twins, separated at birth! That Dr. "D", I knew he was wrong!

I read a "message" from another lady who had the same experience with the ER doctors that I had after the accident. I felt good to write her back and tell her I had gone to the hospital and complained. I felt like I made HER feel a little better.

November 1997

Cheryl Ann, Mark, Marilyn, Dr. Janet, Ron, and all the porphyria patients I've met in one and a half months have changed my life for the better. The information and support from my new friends has made me feel like a human again. Before Mark brought the computer to me, I was sure I would just live out the rest of my life (until my liver failed) in pain and without any answers. I felt so alone.

I was misdiagnosed, however I didn't make myself clear to Dr. Janet and she knew I had Variegate Porphyria for months. She didn't research like I did though. I have all the time to look up this disease. She didn't know phlebotomy was the wrong treatment for this type of porphyria. I never said the name Porphyria Cutanea Tarda, until I insisted one day that from everything I had read, phlebotomy was not good for the cutaneous porphyrias and she said, "You don't have a cutaneous porphyria, you have an acute porphyria." We sat and talked for a long time that day. She was also glad that I had noticed a drug (Percodan) was making me worse, and Mark found the pharmaceutics name, Oxycodone was on the unsafe list. I was going to get better. Maybe never normal, but better.

December 1997

Cheryl Ann, Ron, and I are good friends now. We talk almost daily. We have good days and bad days. We understand when one of us is having a bad day. We offer suggestions but never judge each other and have made it a priority in life to help other porphyriacs. We help them find information, knowledgeable doctors, and sometimes just someone to talk to. Talking to someone who has been where he or she is helps so they don't wake up everyday feeling that horrible lost, alone feeling that we felt when we thought we were the only people in the world with this porphyria.

I may add to this some day. I want to leave it for now, the way it is, unfinished. I think it will always be unfinished until there is a cure for porphyria.