A Letter to Julia

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Chapter 7

Marriage, Bed Rest, a New Granddaughter

May 28, 2010: Mary and Joe are falling behind on their bankruptcy payments mostly due to the struggles we are having with the flower shop and Mary’s inability to look for other work outside of our supportive family business.Mary and Joe are in a Chapter 13 bankruptcy, but may be forced to convert to a Chapter 7.Some of the bankruptcy payments are to pay off the truck Joe uses to commute to work in.Helen and I don’t understand what’s happening with the bankruptcy but live in fear that Joe will lose his truck.

We are trying to help Mary and Joe financially, but we are continuing to fall behind in our own house payments.I haven’t had any responses to the video I posted on YouTube.I was worried right after I posted the video that I would be swamped or criticized or both.Now I’m worried that no one will respond.The days are turning sunnier now, but I’m having trouble enjoying the better weather.I must be slipping into some sort of depression for the first time in my life.

Life continued on for all of us, but now it also included Joe.It seemed fitting that our Mary and Joseph met two days before Christmas and the birth of Christ.Mary was sick, of course, as always. But I had a steady job at the University of Washington, Amy was happily married, Adam and Megan were doing well in school and Mary had found a soul mate in Joe.Her first year at the University had gone very well. She now had fall quarter under her belt.Mary started in her junior year at the University and decided to major in Anthropology.Anthropology was one of the smaller departments at the University of Washington and that along with the emphasis on the study of people and their cultures appealed to Mary.I believe that since Mary had to battle a chronic illness on a daily basis it made her even more able to empathize with others.The tradition in our family was to celebrate New Year’s Eve with our immediate family playing board games.Then on New Year’s Day we had a smorgasbord for the extended family.We all were looking forward to 1995 and Mary graduating from the University in the spring.

Mary continued to work part time to help pay for her schooling.When Mary transferred from Bellevue Community College the Disabled Student Office at the University of Washington had an opening for a work study student. Mary jumped at the chance to work with other students in similar situations to her.Lupus qualified Mary for help as a disabled student also.Mary could have extra time on tests and she was able to bypass the spoken language requirement. As a consequence she was required to take additional upper level classes all dealing with one culture.Mary chose to be immersed in Chinese culture.This worked out well except for one class in ancient Chinese history.The class was taught by a Chinese Professor which made him hard to understand when he lectured.Mary started out with fifteen or so classmates, but the difficulty in understanding the professor and the work load of the class took its toll.Soon there were only five students left including Mary and two who were graduate students auditing the class.

The number of students was now down to the minimum required for a class to be viable.If one more student dropped out, the class would be cancelled.Mary was struggling along with the remaining students and was seriously considering dropping out of the class.However, the professor made an emotional appeal to the remaining students to stay.It seems his career was already negatively impacted by so many students already dropping out and it would be a severe blow to have the class cancelled. Since she was a little girl Mary always thought about others first and this time was no exception.Mary stayed in the class and in the spring graduated from the University of Washington.

I had been promoted to the Research Faculty at the University of Washington and was now a Research Assistant Professor.This was highly unusual as I had never completed my graduate studies.I became bored with graduate classes and wanted to try my hand at working on problems that hadn’t already been solved.At the time I was promoted I was told that only one other Research Faculty member besides me had just a Bachelor’s Degree.Since I was on the faculty I could participate in the yearly graduation ceremony. The faculty marched in at the start of the ceremony and took places on the stage in front directly behind where the graduates would be receiving their degrees.I don’t think anyone besides parents of a child with a chronic illness could understand how Helen and I felt during that ceremony.The daily struggles with the chronic tiredness and nausea seemed far away.Relief, happiness, pride, along with emotions there are no words to describe were there when Mary stepped onto the stage and received her diploma with honors and a GPA of 3.8.That afternoon on June 10th we had a joyous and fun graduation party in the dance hall of our Hobart log home.

It’s late summer now in Maple Valley, August 2010 actually, and I still haven’t gotten any responses to my video, and today I can admit it, I’m very depressed for the first time in my life.Mary and Joe can’t pay for the payments on their truck.Helen and I can’t meet our house payments.We are barely meeting our expenses at the flower shop and struggle to find extra money there to pay our personal bills.There is one bright spot however.While viewing my video on YouTube Mary notices another one by H. Lee Thompson, an Ohio lawyer.In that video H. Lee Thompson is asking for people to contact him that have been damaged by Mirapex.Mary just emailed him and will be talking to him on the phone shortly.

I’ve survived my parent’s death, the rigors of building our own homes while working full time, and Mary’s chronic illness.What has kept me out of depression during all that time was continued hope in the future that I can succeed in if I work hard enough.Now I can’t avoid thinking that the pharmaceuticals are so powerful that they can prevail over us and for the first time in my life take my future away.

When Helen and I were first starting out and just had Amy and Mary we were like lots of young couples and had little extra money.We were in our second home and Amy and Mary were sleeping in a small room that had a closet built out from the side.I had drawn the plans and obtained the building permit to add three bedrooms to the house, but had no money to rent power equipment to dig the foundation.I was feeling stymied, but I beat the stucco off of the outside of the closet and tore the closet off of where the kids slept.We didn’t even have money for plywood to seal up the side of their bedroom so I picked up some old doors that had been discarded on the side of the road and used those to board up the side of their bedroom. I plugged up the keyholes in the doors with paper, and then started to dig the foundation with a pick and shovel.I just had to start doing something.

Even in the midst of this depression, writing this book about Mary and the terrible impact of Mirapex is my way of still “doing something”.It must be helping as today I can still sit here and write.

Mary looked for work the summer after graduating from the University of Washington and found it in the local Maple Valley school district.She started in the fall of 1995 as a substitute teacher’s aid.Mary would have made an excellent teacher, but at that time there was no avenue for outstanding college graduates to bypass the teaching courses and teach as there is now.Mary substituted in both the high school and junior highs, in regular and special education classes. With her empathy towards the unfortunate Mary was especially suited to help in the special education classes.She enjoyed helping with those children.However, the special education teaching was physically taxing for her.When a disruptive student had to be removed from the classroom it was the task of the teacher’s aid to take the student out and control them.Mary had to physically hold one particular boy from hurting himself or others until he calmed down.After such encounters she would come home with bruises.

Joe had been ready to marry Mary the first time he saw her.Helen and I cautioned them that it is better to get to know each other for at least a year until becoming engaged.That way they would go through all the seasons and get a chance to see how the other handled life’s various problems before committing.So they did, and on December 16, 1995 Joe took Mary on a dinner train ride to a winery north of Seattle.He proposed on the way back and Mary said yes!A child’s normal progression in life from toddler to college graduate to a young woman engaged to be married is wonderful, but to parents of a child with a chronic and potentially dangerous illness they are momentous; especially when the outcome of the child’s whole life is in doubt.

Mary was ready for a break from working at the schools and took the summer of 1996 off.It seemed the teachers that needed the most breaks were those that worked in special education.Mary’s substitute jobs were more and more all about controlling difficult special education children.This was too physically taxing for her and the low pay of the work added to her stress.Mary spent some of her time off with my elderly Aunt Carolyn down on her farm outside of McCleary Washington.Carolyn had been widowed many years before and had given up on raising beef cattle a few years after my uncle had died.The farmhouse was built in 1913 and still was heated with only wood fireplaces and a wood stove in the kitchen.If any smell can bring me back to good family times it’s the smell of dinner cooking on a wood stove.Mary and Carolyn were good companions as Mary was also limited in her physical abilities and energy.Both liked to do hand work and they would sit by the wood fires at night, talk and knit.

Mary and Joe planned for a June wedding but didn’t have the money for a honeymoon.However fate stepped in, in the form of a fire in an apartment house a few blocks from the University of Washington.The apartments were saved but the oak flooring on two stories was charred and water damaged.Years before I learned from an old carpenter how to steal flooring in a hurry, not that I ever stole any. He perfected his technique during the depression when house with nice hardwood flooring were abandoned.Long wood wedges were cut from two by fours.The first few boards along the side of a room were ripped up and discarded.Then the wedges were tapped underneath the remaining first board.One of the crew would walk down the line of wedges giving each one a tap with a sledgehammer.As the boards “walked up” the wedges and fell off the butt end the other crew would hurry them into a waiting truck.If all went as planned a good sized house could be cleaned out in one night.

I hurried over to the apartment house and got permission to remove the wood flooringfor free as they were going to have to pay to remove it anyway.My son Adam helped Joe with the removal which went easily as planned.It went so easy that it crossed my mind to start stealing hardwood floors on the side.However, my thoughts on stealing hardwood floors changed when I started removing the nails from the floor boards.They had to be removed by using a special pair of pliers that pulled the nails through the boards, pointed side first.This did less damage to the boards and was possible because the nails were ones with small heads.I firmly gave up on the idea of a lawless life after spending many cold nights after work in the garage pulling nails.Finally that torturous work was completed and Joe and I planed down the finished side of the boards to remove the water and fire damage.The over $2,000 dollars we made when we sold the boards more than paid for Mary and Joe’s honeymoon.

Mary was still working for the Maple Valley School District in the winter of 1997, but that work was becoming more and more taxing for her.In January Mary applied at Microsoft and started work there in February.Mary was a paralegal assistant.The legal department was in the same building as the office of Bill Gates and Mary would occasionally pass him in the hallway.The work there was not as physically taxing and paid much better.The only drawback was the long and tiring commute from our log home in Hobart.No matter how old Mary was Lupus was a constant companion that impacted every aspect of her life.

Mary and Joe found an apartment in Redmond, Washington which thankfully shortened Mary’s commute to Microsoft.They were married on June 21, 1997 at the church in West Seattle where Helen and I and her older sister Amy were married.They left the church in a hail of rice to depart in; you guessed it, a friend’s shiny tow truck.Their reception was at the Aquarium on the Seattle waterfront.Mary and I danced a waltz and they were off to their, thanks to an old crook, floor financed honeymoon.

It is now September 14, 2010 and our anniversary.This year we celebrate it by having Mary and Joe’s truck repossessed.We have some hope now as H. Lee Thompson has agreed to look at Mary’s case.All the Mirapex lawsuits have been transferred to the Federal court in Minneapolis Minnesota.This is called a MDL or Multidistrict Litigation.This streamlines the court process as only a few judges preside over the cases.

November 8, 2010: I receive the first reply to my video.It is not from another Mirapex victim, but it buoys up my spirit.Here is the letter which I feel is worthy of showing here in its entirety.

“Just watched your video on you-tube. Sorry, I don’t personally have a Mirapex story but I just wanted to wish you the best of luck in your search for some kind of justice. I’m in my first year of nursing school and came across your video looking up info for pramipexole (mirapex) for my pharmacology class. I’ll tell you one thing: you’ve got alot of moxy putting yourself out there against a giant pharmaceutical company. The way these businesses have influence over our elected leaders is downright scary. It’s always amazing to me how in most of their television ads (which, by the way, are quite indicative of health care driven by profits) everything looks so beautiful and resolved with their drugs. There’s mention of “possible” side effects, but how can you pay attention to them when all you see is a family laughing around a campfire, or a smiling retiree hugging her cute grandson?

Anyway, I didn’t mean to bother you with a rant on the current state of pharmaceutical advertising. I was touched by your plea and I’m so sorry that you and your family were so badly affected by a product that was supposed to be of some help. Good luck to you and I hope that your message will reach the right people!”

This was my reply.

“Sorry I’m so tardy in getting back to you, but we are still struggling to recover from my daughter’s bout with Mirapex. We bought a small flower shop in Enumclaw, WA to help rehabilitate Mary after she finally was able to get off of Marapex. This has helped her greatly, but takes up all our time and many nights I’m too tired to check my email. I can’t go into details, but I can tell you that BI cares as much for their customers as ordinary people care about cockroaches. It’s all about money. Mirapex is more dangerous than most drugs because it takes over the mind to the point that the patient thinks that they are doing great, even fantastic, where the reality is a physical, mental, emotional and financial train wreck. Even worse when confronted with what’s happening they get angry and refuse to quit. Our daughter finally quit after spending two days in the hospital from a physical collapse brought on by continued manic activity.

My family really appreciates your email and kind thoughts.”

Mary continued to work at Microsoft through the fall of 1999.She was working full time and the physical stress of daily work was too demanding.She loved her job and got along great with her co-workers.She enjoyed the free snacks and drinks and the yearly picnics with all the food and drinks provided for free.But Mary was gradually wearing out.She and Joe really wanted children, but with Lupus having children was fraught with danger.Pregnancy could send her Lupus into a full fledged life threatening flare, and these words were the encouragement from her doctor.

Mary left Microsoft and they moved to Issaquah where they purchased a condo.This way they would only be about 20 minutes from our house.Our trips to take care of Mary while Joe was at work were becoming more and more frequent as her health wore down.Now at least the trips would be less that an hour for us.We also hoped that if Mary could find part time work her health would improve to the point where pregnancy would not be so dangerous.

Joe continued working as a tow truck driver and Mary took a part time job at a chiropractic clinic in town.Mary’s health improved with a lower work load and no driving commute, as she could walk to her job at the clinic. Mary announced her pregnancy in June of 2000.Helen and I were excited to have another grandchild on the way but scared also.One bad thing about having so much information available on the Net is that too much information is available on the Net.I knew too much about how Lupus could impact a pregnancy.Soon Mary had to quit her job at the clinic as her doctor put her on bed rest.This was a double edged sword as she would be resting, but everyday we worried that Mary would lose the baby anyway.

On February 17, 2001 our granddaughter Julia was born.Mary had faithfully kept to bed rest and delivered without incident.Julia was almost a month early, but with modern medicine this was not a problem.Except for bed rest, Mary’s pregnancy was normal and it didn’t cause her Lupus to get worse.We had a slight hope that her pregnancy would cause Mary’s lupus to go into remission but this didn’t happen.Life went on for all of us with Lupus still riding along but now we had a new passenger with us, our granddaughter Julia.

November 1, 2010: Helen and I are in the middle of compiling all the information H. Lee Thompson needs to decide on whether to file a lawsuit or not.We have to document everything and we need to copy all Mary’s income tax returns,doctor records, her druggist prescription records, affidavits from us and her siblings documenting her compulsive behaviors, her business records, and pictures of their unfinished home.To file a civil case against the pharmaceuticals in federal court Mary has to document at least $75,000 in damages.To do this we have to tally up all the money we loaned her and Joe to help them keep their home and qualify for bankruptcy.This means days and days of compiling and copying receipts, bank statements and check copies.I need to get back to writing on the book, but getting the records together along with working at the shop is taking up all our time and energy.

November 17, 2010:We just mailed off a large box full of all the papers H. Lee Thompson required so that he could make a decision whether to file a lawsuit.Helen has been working very hard to obtain a loan adjustment on our home. The going is very tough as they keep losing the papers we send them. The last batch of papers we sent by American Express and they were signed for at the mortgage company.They claimed they never got them.I tried contacting them, but it is impossible to get past the people that answer the phones for them who are obviously in another country.They just kept repeating over and over again that they never received the papers and that we were in arrears again.We would need to now give them all the papers we had originally sent plus a new analysis of the income from our flower shop.I was so frustrated that I was almost in tears on the phone.It seems any good news we get is ruined by bad.H. Lee Thompson is our only hope we can cling to.

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