A Letter to Julia

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Chapter 10

Starting Mirapex

Lupus, along with chronic fatigue and nausea were Mary constant companions.They were there when she went to bed and there when she got up.They were there during school and on her wedding day.Only someone with a chronic illness could understand what that meant.I would periodically check the Net for any new treatments available.Luckily Mary’s Lupus didn’t involve her internal organs, at least not yet.There were stronger drugs available in that case, but their side effects could be severe and they didn’t seem worth the risk unless Mary’s life was threatened.

While Mary was pursuing life she was constantly on the lookout for something or someone to make her feel physically better.Mary tried eliminating some foods from her diet to see if that would help with her fatigue and nausea.This was not too successful, but she did feel that cutting out pasta products might have helped.Mary was never overweight so losing weight was not an option toward better health.Mary couldn’t try heavy exercising since her joints would stiffen up, but she remained active and hiked with our family and attended our dances.

Mary was always on the search for a doctor that could help her and after going to one doctor for several years with no improvement, she would locate another.Each new doctor would keep her on Plaquenil, but would differ on what pain killers Mary would take and what supplements to try.Mary was particularly hopeful when she started going to a naturopath along with her regular Lupus doctor.Unlike busier doctors, the naturopath spent a lot of time listening to Mary.This was helpful to Mary’s mental health and she liked the emphasis on her whole life, instead of just her specific Lupus illness.As only people fighting chronic illness can know most often they search for a cure, but never find one.Mary’s try at naturopathy was also unsuccessful.

Mary was excited when she started going to a doctor that had Lupus herself.That doctor seemed to be able to keep her career going while having Lupus.Mary had done the same in her life and now she hoped that the new doctor would better be able to understand her hope for less fatigue and nausea.Her hopes were dashed, however when this new doctor had nothing more to offer, but the admonition to get on with her life.

By 2005 Mary had settled in with two doctors.One was a general practitioner who handled Mary’s normal health needs and the other was a rheumatologist for her Lupus care.Mary’s two doctors consulted when necessary on her care and Mary was satisfied with both of them.Mary’s rheumatologist was convinced that Mary’s Lupus had gone into remission as all blood test showed that it had quieted down.However, Mary was still plagued by chronic fatigue and hurting muscles and joints.This puzzled her doctors.Mary’s Lupus tests had always been borderline positive, but this is not unusual in an illness that is hard to definitely diagnose.Her rheumatologist wanted to keep Mary on Plaquenil to prevent Lupus from flaring again, but was concerned that Mary was not feeling better.

Both doctors suspected that something else was happening and began a search to find out what it was.After extensive tests and ruling out most everything else they settled on a probable diagnosis of Fibromyalgia. This made Mary feel better to have a name for her fatigue and pain, but the problem was still there.There was not a satisfactory cure for her new illness.A drug, Mirapex that had been approved for use in Parkinson’s and Restless Leg syndrome was being testing around the country by doctors with Fibromyalgia patients.Results were promising.A local doctor was also actively promoting Mirapex for Fibromyalgia.After consulting with both her doctors Mary decided to try it.On January 9, 2006 Mary took her first dose of Mirapex and soon was up to 5mg per day.We had no qualms about this new drug as the warning that came with it seemed standard with no special warnings that stood out, just the standard boilerplate.We didn’t worry about using Mirapex to treat Fibromyalgia since the second sentence under common usage read “It [Mirapex] may also be used to treat other conditions as determined by your doctor.”We knew that many drugs found new and helpful uses through such prescriptions.Here is the partial scanned image of the warning Mary received with her first prescription of Mirapex.

March 31, 2011:More terrible stories are arriving every day of the compulsive behaviors caused by Mirapex.Some victims have just stopped taking Mirapex and others are still taking it, but wonder if it could be the cause of their behavior.For those still taking Mirapex my advice to them is that Mirapex is most certainly the cause of their destructive behavior, but that they need a doctor’s care to wean off of it since withdrawal can be so severe.

I read a litany of horrors: life savings gone, retirement accounts gutted, getting up in the middle of the night to gamble, divorce, compulsive eating, families broken apart and more.Making the horror even worse if that is at all possible are the illnesses, Parkinson’s and Restless Leg that the sufferers also endure.Mirapex can help with these illnesses, but what good does that do if lives are destroyed in the process?Mary is reading some of the emails now, but can’t yet bring herself to answer any of them.

H. Lee Thompson tells us that the whole process will take four to six months.There will be a settlement conference at the end of that time which should result in a settlement Mary and Joe would be satisfied with; somewhere in six figures.The first trial against the manufacturers of Mirapex took place in 2008 after hundreds of cases were bundled into the MDL for Mirapex lawsuits.This was chosen to be a “bell weather” case as the outcome of the trial would give an indication of the results for future trials and could make settlements outside of a trial harder or easier to obtain.The verdict was for $8,000,000 in favor of a man who compulsively gambled of which about $7,000,000 was punitive damages against the manufacturers.The rest was for financial loss from gambling and for pain and suffering.

Mary and Joe have no expectations for that type of settlement, but simply want the mess Mirapex caused in their lives cleaned up.H. Lee Thompson asks, once in a while, for more information and more affidavits from me, Helen and Mary.The legal process seems to be going along as planned.I’m not very concerned as there were over 500 cases in the Mirapex MDL and the only one that went to trial was the first one.All the others must have been settled outside of court as I can’t find any record on the Net of dissatisfied lawsuit filers.Of course it is virtually impossible to get information on settlements since to receive a settlement it is a requirement for all parties to sign a non disclosure agreement or NDA.

We noticed a difference in Mary soon after she had increased her dosage to 5 mg per day.For the first time since she was a teenager Mary started feeling better. We often had family dinner parties at our home for birthdays and holidays.All our children and their families came, but Mary would normally spend some of the time lying on the couch in the front room or on the bed in the guest room.Mary would get up to eat with us and she would try to participate in board game playing.If we watched a movie together she would be able to do that with us since she could sit.After Mirapex Mary would hardly sit down to eat with us and would quickly disappear into our basement where she had set up a sewing table.Mary had always been a sewer, but now it occupied all her spare time.We attributed this new behavior to Mary finally feeling good for the first time in a long while and just excited to actually feel like doing something.We were happy for her.

As spring came to Maple Valley we started to see more changes in Mary.Mary told us she still felt great, but now Mary couldn’t seem to remember to take her medication. The other problem is that she also couldn’t remember to order more prescriptions when she ran out.This was true of all her medications including non-Lupus related ones. This was very worrisome to us as she had to consistently keep taking Plaquenil for Lupus.Mary had always kept her pills in a case that has days of the week in separate sections.Helen and I devised a plan where we had two identical pill cases.One case was at Mary’s house and the other we kept at our house.That way when she forgot to order new medication Helen could keep her going with our supply.We were trying to accommodate Mary as she was so happy to be feeling that once in her life she had energy.

As far as Helen and I knew Mary was still working on her business, but other odd behavior started occurring.In May Helen found Mary at home sewing, but her home was a shambles.Helen had to mostly deal with these new problems Mary had as I was still working full time at the University of Washington.When I did have spare time I was helping her husband Joe with trying to get their cabin on a solid foundation.Everyday I worried that an earthquake would bring their house down.

Helen and I felt that we could tolerate Mary’s new quirks in order to finally have her free of chronic fatigue and nausea.However new problems kept cropping up.Mary never drove much because of her chronic fatigue.Mary would drive to local stores, but never into Seattle.About the longest trip Mary took was the fifteen miles to Issaquah.Otherwise Helen or I drove her.In July Mary started falling asleep at the wheel on the drive to Issaquah.I thought it was due to Mary staying up too late at night sewing.Mary didn’t drive to Issaquah very often anyway so we tried to solve that problem by having Helen drive her there.

July came.I’d become worried that Mary was not spending enough time on her business and too much time sewing.The other disturbing thing was that even though Mary was sewing constantly she didn’t complete any sewing project.Mary liked to show off what she was making and model the clothes, but all of them stayed pinned together.

March 31, 2011:I’m still getting a slow, but steady stream of emails from other Mirapex victims, some of whom are probably contacting H. Lee Thompson, but I don’t know for sure about that.Today a woman contacted me, that among other compulsions, is compulsively sewing like Mary did.I’m given her Mary’s email and Mary will try to reply, but maybe Mary won’t be able to.

April 2011: Joe and I have been working in their basement putting up boards to fasten plasterboard to and Mary is going through boxes trying to consolidate what they are storing.Mary is finding some of her sewing projects from her time on Mirapex.Mary is an excellent seamstress and Mary is appalled at the sloppy and crazy work she’s finding.Mary throws most of them right into the garbage.

Mary’s older sister Amy was also worried about Mary and she and her husband took Mary’s daughter Julia for a week in early August so Mary could concentrate on her business and catch up on her contracts.That plan went array when Mary found an ad online looking for someone to take care of a blind and deaf dachshund.We didn’t know it at the time, but Mary was spending a lot of time on the Net going through Craig’s List looking for bargains.That’s how she found the notice about the dog.Mary already had a cat and a dog in her small cabin.None of us could see how she could handle a blind and deaf dog and her daughter.Joe could help at night, but he worked during the day.We were right.It was a disaster and Mary had to find another person to care for the dog.Consequently not much work on her business got done that week.

Mary had been having trouble concentrating on her work and now towards the end of August it got worse.On August 29th Mary couldn’t seem to figure out how to bill Microsoft for work she had done.Helen had to help her with that task that Mary had always done for herself.

Mary had been working the first half of 2006 and did have income she could use for finishing the foundation.Joe and I had been hand digging the dirt out from under the cabin to make room to put in the forms for the footings.When money was available we rented a small dirt mover from the local rent-it shop.Work progressed slowly, but steadily.At first I was scared to be working under the cabin with it held up on steel I-beams and piles of four by fours.By the time I had spent ten months under their home I was getting used to it, but still didn’t like it.Joe and I finally got the forms in place.Before Mary was on Mirapex she had researched what forms to use and settled on a new kind of form that was made out of plastic. The footing forms were hollow rectangles with slots in the sides. The forms would function both as the forms to pour the concrete into and would also be the footing drains.

I designed the Hobart log home and the one on Pipe Lake so that there would be sufficient room on the sides to easily lift up building materials and logs onto the walls.I also designed room to drive a small tractor or large-tired forklift around the sides to aid in heavy lifting.Mary and Joe’s home was to be built on a narrower lot than the other homes and the architect, wanting to maximize the size of the home, only left the minimum distance to the property line on the sides.This was the one disadvantage to having someone else draw the house plans.In order to actually put in the footings and then build up the forms for the concrete basement walls more dirt had to be dug out around the foundation to make room to work.Consequently, we couldn’t drive around the house with any size tractor.

This made pouring the forms really difficult.The cabin, on top of the cribbing, blocked use of a concrete pumper truck with a boom to move the hose over the footings and there was no room to drive around.Instead, we used a long hose several inches in diameter that we had to hold by hand and move over the footing forms while the concrete poured out.I tried to pick up the hose before it was even filled with concrete and it was almost too heavy to lift. Once the concrete started flowing through the hose it was like a writhing impossibly heavy snake.It took Adam, Joe, me and Mark to hold it down while Helen, Mary, Amy and Megan started to smooth it out to the right height.Compounding the problem was the iron rebars sticking up from the footings. This was physically one of the hardest building jobs so far and eventually we had to do the same thing when the forms for the walls were built.But then the hose would have to be lifted up nine feet to the top of the wall forms.Somehow we managed and on September 7th, 2006 using an all-family work party, the footings were poured.

More bad news came in September.Mary was starting to get complaints from Microsoft over her handling of the contracts, but she did’t seem to be all that concerned.It was nice to see Mary energetic but if we were going to get her home off of the cribbing and onto an earthquake safe foundation we would need her extra income to do it.In September Mary contacted a construction loan specialist.He sat down with Mary and went over her finances.We met with him also.He determined that if Mary could pay off a $50,000 credit card debt he could then get her a home construction loan to finish, not only the foundation, but the whole home.During all these discussions with the loan officer Mary was like the old Mary who had made it through college in spite of the odds against her.

What we were hearing from both Mary and the loan specialist seemed to make sense to Helen and me.We then agreed to take out an additional $50,000 mortgage on our home so Mary could get the building construction loan.I had worked all my life to build up the equity in our homes through building ourselves, so that we could retire into a nice home and, if we needed it, get a reverse mortgage to help with our retirement finances.We didn’t think that the extra $50,000 would make much difference to these plans as we had built up a lot of equity over the years.Besides, we were driven by the worry of their family living in a potentially dangerous home if we could not get the foundation secure under their cabin.It had practically made us sick seeing the cabin up on the cribbing, though I didn’t tell Mary that as I didn’t want to scare her.On October 16th the loan on our home was finalized.We had to borrow more than the $50,000 to pay off the credit cards as we didn’t have the cash to pay all the loan finance charges up front.

Disaster struck in October, but we didn’t know it at the time.Mary had quit working on her business all together.Mary had been neglecting her business for several months prior to October.It had been a slow slide into her other compulsive pursuits and away from her lucrative business, so I guess I shouldn’t have been surprised when Mary stopped entirely, but I was.However, we didn’t find out until November when Helen started to realize the extent of Mary’s financial problems.

Helen discovered that Mary had simply stopped paying any bills.Mary just stashed them all over, but never opened them.Joe and Mary had divided up the monthly bills between them including two different mortgage payments.Joe kept paying his, but Mary gave him no indication that she wasn’t paying hers, nor working on contracts.The first time any of us realized what was happening was when delinquent payment notices started coming in the mail.Mary didn’t open them either, but Helen found some of them helping Mary clean up.Helen then started the tedious and laborious task of going through all the unopened mail and Mary’s credit card accounts.The date was November 14, 2006.

It was a grim December for us.Mary had no income, the footings were poured, but there was no money for building the forms for the basement concrete walls.Without the walls the cabin would stay up on the cribbing.And now it hit Helen and me.Mary was too far in debt to even think about getting a home construction loan.In December Helen continued with the grim task of sorting through all Mary’s unpaid bills.

Christmas 2006 came and, as always we celebrated together as a family.So far we had been successful at keeping our family together and the holiday celebrations helped.Mary, Joe and Julia started coming over to our home on Christmas Eve once they moved into the cabin.Their cabin was pretty small and we had a large Christmas tree in the front room that could hold all the presents.Helen and I were up late putting more presents under the tree and filling the stockings after everyone had gone to sleep.Since our children were little we had a rule that they could get up early Christmas morning, but they couldn’t start opening presents or wake us up until 8 AM.After we let them knock a few time on our bedroom door while pretending to be sleeping everyone gathered in the front room.It was our tradition to read the Christmas story from the Bible before we started on the stockings; then we dug into the presents opening one at a time starting with the youngest.In the afternoon our daughter Amy’s family came over and I cooked Christmas dinner for everyone.In spite of everything our family persevered.

June 10, 2011:Helen and I receive notice that our loan modification has been approved.It has been an awful and stressful struggle as our papers were lost several times and we had to start over on our application.We are relieved, but cautious at the same time.We are living on my retirement income from the University of Washington and from my Social Security.There is virtually no income from the flower shop and any extra goes to help Mary.We can keep our home for now, but our new equity is too little to qualify for a reverse mortgage.Goodbye plans for a secure retirement.Now I fear unless Mary can get a settlement and pay us back, I might work at the flower until I die. Ugh!

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