Mary is Diagnosed with Lupus
January 28, 2009: Mary had seemed to be getting better every day, but today was a real setback for her.Helen came home very discouraged tonight as Mary was simply not able to focus on only two simple tasks arranging flowers.Despite the fact that Helen stood by her and tried to get her to accomplish what she needed to do, nothing got done.She was very easily distracted by anything and everything.She got frustrated with herself and everything around her.She couldn’t figure out if that was because she hadn’t eaten or because her brain just wasn’t working correctly.My wife got her some food and told her that her only job was to sit down and eat.She did do that after being reminded several times.She was a bit better after that but still not able to accomplish much of anything. It wasn’t until perhaps mid-afternoon that she finally got one of the jobs done.
Meanwhile, flowers had been delivered from the wholesaler.One of the things delivered were some pink tulips which were needed for an arrangement the next day.In fact, one of the simple tasks Mary needed to do was to arrange those tulips in a vase with just some filler.Mary thought the shop had to pay too much for those tulips so she sent them back with the driver.Unfortunately, there were no tulips to replace them with so the flowers will have to be bought at a local store at full retail price in order to fill the order.Mary realized her error and was again very frustrated and discouraged for making that decision.
It’s almost a full time job just to have someone, like my wife or myself, standing by Mary when she is like this.She needs continual prodding and has to constantly be reminded to stay on task.She worries about what we are thinking about her and expresses concern over that.It’s pretty exhausting all the way around.
Our first house was on 35th Avenue SW in West Seattle.We had been looking at houses in West Seattle for some time and had asked my father to help us.The last time my dad shopped for houses was in 1949 so he was in for major sticker shock.One of the houses we looked at was so small that the bathroom only had a three quarter sized bathtub in it.Helen, at five foot three inches couldn’t even fit in it.Other houses were just as bad with another having such a small kitchen that the refrigerator was on the landing of the basement stairs.This was the early 1970’s and our budget was in the $10,000 range.My father thought that we should be able to find a really nice home for that price, but he soon found out otherwise.By the time we found the house on 35th we were pretty discouraged.It was a “for sale by owner”.The price was more than we wanted to pay ($15,950), but the kitchen had the refrigerator in it, and it even had a small eating area.The bathroom had a full sized tub in it.It looked like heaven to us.
My father had designed and helped build his dream house overlooking Puget Sound.This gave me hope that we could remodel the 35th Ave. house with my Dad’s help.It had an unfinished basement and an unfinished attic.With the purchase of that house we were off and running straight into life.This is the house we lived in when Mary was born.
We were so excited to find a house that actually had a real bathtub that both Helen and I were very surprised to discover when we moved in that the main floor was painted a pumpkin orange; a real pumpkin orange.So, the first order of business was to repaint the downstairs.We put walnut paneling on the fireplace wall, painted the other walls white, and antiqued the woodwork.It looked really good to us, but looking back on it now we were certainly children of the 70’s.Helen also went to classes to learn decoupage and how to make large molded grapes.We remolded the kitchen, replacing rotted windows, taking out a wall, adding a new sink and countertop, wallpaper and paint, and new electrical plugs.Yesterday I was looking through our box of saved wallpaper to use some in an Easter window display for our shop and ran across our old kitchen pattern.It brought back nice memories from that period.We even put Helen’s dream fence, a white picket fence around the front yard.We didn’t have much money, but we were happy.
Helen’s cousin, Gail, who lived a few blocks away, had morning sickness while watching a game show on TV.Ever since then, if she sees that show it makes her nauseated.That was the first I’d heard of that happening, but it was soon to hit home at our house.Helen’s pregnancy with Amy had been so uneventful that Helen’s pregnancy with Mary caught us by surprise.Helen was definitely sicker with Mary, but that was not all that happened.While Helen was pregnant with Mary I was still working on the attic.I was turning it into a bedroom for Helen and I and another for Amy and the new baby to come.Helen was pretty far along when all I had left was to install the carpets.We had wanted nice plush carpeting with a lush pad underneath, but had to settle for indoor/outdoor carpeting with no pad.To get the carpeting upstairs Helen and I had to haul it into the attic by rope through an upstairs window.I didn’t notice any odd smell in the carpeting.It smelled new and clean to me, but the smell made Helen sick.As a consequence, we didn’t move into the finished bedroom until after Mary was born and even then Helen had trouble with the smell.
The 35th street house was on a busy arterial.We didn’t think about this when we bought it, but while Amy and Mary were growing up it became more of a concern.There was no parking on the side of the street in front of our house and the parking on the other side was fairly limited and dangerous with all the traffic going by.After Mary was born Helen and I started looking for another house in West Seattle we could buy at a reasonable price and rebuild into our dream house.We found a little stucco house on a double lot with a great view of Puget Sound and the mountains. It also had eight fruit trees.The yard needed a lot of work, but the potential was there.In June 1973, when Mary was a year old, we moved into the new house on 59th Street.
All our family worked hard on the new house.I built a fun tree house in the back yard for Mary and Amy to play in.My father and I collected used concrete from a road rebuilding project, broke it up with sledgehammers and used it to build retaining walls for a large vegetable garden. My father and I tore down a free used fence and rebuilt it around our house so the kids would be safe in the yard.Since I was married I had worked full time at the University of Washington as a scientist, then pretty much worked at nights and weekends at home on all our building projects.We did things together as a family, but I was working too much.A fellow scientist at the University related that they had every Sunday as family day where they did fun activities together.That sounded good to us so we adopted that plan.Ironically, several years later when I mentioned to the scientist how great his suggestion had been he admitted that his family had fallen away from the practice soon after he told me about it.
Mary’s life was filled with friends and extended family.She had three loving grandparents and lots of cousins to play with.We were always getting together for family birthday parties and holiday celebrations.On Sundays we went to the church, where Helen and I had been married, and then had family day.During the summer we went camping or spent leisurely days on Pipe Lake, on property my parents bought in 1953.In the fall we picked and canned the fruit from our trees.One apple tree had so many apples that we invited different friends and family over each year to pick and squeeze them into juice.My parents always came to help with the squeezing. Life was good.
January 31, 2009:Helen came home from work exasperated once again.She’d taken notes about some of the things Mary had said at the shop because she was having trouble working again.Mary had a wedding consult and got herself into quite a dither before the bride and her mother arrived.She questioned her ability to do much of anything and was unable to make any flower arrangements at all.Here’s part of what Mary said:
“Since I got out of the hospital I’m having a difficult time just living.It is strange waking up because things just don’t feel or seem right.It’s like I went to bed at age 33 with the excitement of life and woke up three years later wondering what happened.I’m living in some sort of time warp.I’ve completely lost my confidence.I know I used to be able to do things but now I have to re-teach myself all the basics, even like reading a clock.Something definitely happened to my brain.It feels like someone took over my brain.It scares me when I feel pain in the right front part of my head.I used to write contracts.I knew what they meant.Everything made sense.Now it seems like things in my head are continually shifting and I feel as if I’m jumping from year to year.”
In the late seventies Helen thought about having more children.Amy and Mary were growing up and we missed having little feet running around the house.We had fixed up the house, but would need more bedrooms for the extra kids.My father, Helen, and I had added a new kitchen on the side of the house.I drew the plans and we did all of the work including the plumbing and electrical.Now I took on the more ambitious plans of rebuilding the rest of the house.We decided on a two story four bedroom half -beam style home.During the permit process the building department wanted to have the footings of our existing foundation checked to see if they would support a second story.To our unpleasant surprise the existing house had no footings.We were bitterly disappointed since we didn’t have the resources to tear down the house and start over.Instead, we decided to build a two bedroom two story addition onto the side of the house.I dug the foundation by pick and shovel by hand in the evenings and Saturday.
When we had the foundation poured we had to wheel the concrete from the alley around to the side of the house by wheel barrow.The first time the driver of the cement truck filled my wheel barrow with concrete I couldn’t hardly lift it, let alone wheel it. He took pity on me and filled the other loads half full.He didn’t even charge us for the extra time to complete the pour.This was typical of our experience with building inspectors and other “blue collar” workers who went out of their way to be kind and helpful. In a couple of years of hard work our new addition was complete.
Helen became pregnant during the time when we were completing the finished work on the new addition and the remodel of the rest of the house.We wanted to have everything done well before Christmas and the new baby came.Everything was going according to plan.Our financial situation had slightly improved since we lived in our first house, so this time we were able to pick out real carpets with real pads under them for the house.The three bedrooms and the front room were to be carpeted.There was a special deal at Sears in Seattle where installation came included with the purchase.This was a treat for me since I could simply show up after work and the carpets would be installed.Unfortunately, there was an employee strike at Sears which held up the delivery of the carpets.It wasn’t until Christmas Eve day that the carpets were installed.We hadn’t decorated for Christmas since the rooms had to be cleared for the carpet installation.After a very long Christmas Eve night, the tree was up and trimmed, all the presents were out and Christmas came on schedule to the Locatelli house.
On January 4, 1981 our son Adam was born. Helen had wanted to try natural childbirth with the third baby, as was the trend in the early eighties.There was concern then about being over drugged during childbirth and its effect on the baby.She got through it, but it almost did her in.Right after the births of Amy and Mary, Helen was sitting up in bed anxious to work on baby announcements, all excited about the new arrivals.This time she was in bed, but more like a zombie than a new mother.When she could get the energy to speak she begged me and made me promise that she would never have to go through childbirth again.I was relieved that, after a good night’s sleep, Helen was back to her old self and thrilled to have a son.If anyone wants to ask Helen about natural childbirth they better have a running head start.Helen was certainly a victim of another popular trend of the time based on the bankrupt philosophy that having a very large baby by natural childbirth could be fun and inspirational.Now Mary and Amy had a baby brother to play with.
Both girls enjoyed taking care of Adam, and it was nice for Helen and me since we had built-in babysitters.It was fun having a baby around the house again.Amy was 12 and Mary was 9 on the day Adam was born.We built a deck off of our master bedroom on the second story where all of us camped out on hot nights.We had bought a used Bastian Blessing soda fountain in the 1970’s for thirty five dollars from a University surplus sale.We finally had a family room to install it in.We started celebrating Mary’s birthday every year with an ice cream party.
One advantage of being a scientist at the University of Washington was the occasional field projects to other locations.Helen and I believed in doing things together so when the projects came along we went as a family.Since I was studying winter storms the projects went from November through January or February.We took Amy and Mary out of school and enrolled them in schools near the field project.This worked really well as the new schools were always happy to accommodate our kids and Amy and Mary made new friends and had new experiences.With my per diem allowance we were able to rent modest houses and with not eating out we could make ends meet.Before Adam was born we had stayed at Grayland on the Washington Pacific Coast.Amy and Mary loved it there.We stayed in a very small beach cabin close to scenic cranberry bogs.Friends and family came to spend time with us.In winter 1982 we were also on the Washington coast, but this time we were at Ocean Shores in a small house.We all look back on these field trips with good memories.
My parents spent several days with us at Ocean Shores.My mother enjoyed helping Helen around the house and my father really enjoyed walking on the beach with the kids and me.My mother helped Helen cook a “real” breakfast for all of us.It was a nice change from my normal fare of cold cereal and fun to eat with everyone around the kitchen table.Simple moments like that make a life.In early May we went on a trip with my parents to California to visit relatives.It was the last trip Mary would take with her grandmother.When we returned home my mother was diagnosed with multiple myeloma.Mom died a couple of months later in July.
Soon after Mom died Helen started developing strong feelings about having one more child.Jesus used the example in his teachings of how a new mother will forget the suffering of childbirth after the baby arrives.That was the same for Helen who had forgotten the vow to have no more children she made after birthing Adam. We were finally in a finished house, but our finished house only had three bedrooms and she wanted a bedroom for each of our children.We began looking at property to build on.This time we would build a house from the foundation up.My father would help us and we hoped it would, besides being a large help to us, help him to recover from my mother’s death.
We paid a professional to install cedar siding on the outside of the house so we could get it ready to sell faster than I could do it myself.This stretched us pretty thin financially.There was an economic downturn in Washington State about that time which made it almost impossible to sell the house.Fortunately for us or maybe not so fortunately we knew someone that worked in the produce section of a grocery store.They were supposed to throw away all the spoiled vegetables every week, but boxed them up and gave them to us instead.One day a week we sorted through all the boxes of vegetables cutting out the spoiled parts and saving the rest.Once a week I made a stew out of what was salvageable.We called it depression stew.Sometimes it wasn’t so good, other times it was awful but it kept us from starving.Eventually the house sold and we had to find another place to live.
In order to find property we could afford we ended up buying one and one quarter acres in Hobart, Washington, about 30 miles southeast of West Seattle.It was a level lot next to farms.I started drawing the house plans and we moved most of our belongings into my father’s basement.Helen labeled every box and kept a list of what was in each so we could easily find something we needed. We moved a small travel trailer onto the property where Helen, Adam and I slept.I built a platform where we put our camping tent.The tent is where Mary and Amy slept.They had their beds and dressers in the tent so it was pretty comfortable, at least when we started in the summer. I put the washer and drier out by the power pole and covered them with a tarp. Helen was nine months pregnant when she had to walk out to the power pole to do the laundry and there were plenty of laundry to do with dirty clothes from building and the kids playing.
We designed a 4500 square foot log house that would be two full stories with an attic that our children could play in. Helen was pregnant with our last child so she couldn’t help with the heavy labor.I went on half time at the University of Washington.My father drove out from West Seattle every day I worked on the house to help me.He was 76 at the time, but he worked full days helping me put up logs.Both my father and I toughened up.The first time we put down flooring on the first floor (six inch wide used car decking) we thought we couldn’t possibly finish the house.By the time we put flooring on the third floor it was nothing.Friends came and helped when they could.
Valentine’s Day, February 14, 2009:Mary doesn’t want anything for Valentine’s Day.She doesn’t want flowers, candy or any present at all.This is not like her as Valentine’s Day is one of her favorite holidays, but she has been severely depressed for a week and shows no signs of coming out of it.She manages to get to our flower and gift shop and complete the flower orders, but all the life has gone out of her.We are just hanging on by a thread with the business since the recession has hit everyone hard in Enumclaw.
My father and I were just putting down the car decking on the first floor when tragedy struck.It had rained that day and my father and I were glad to come in for dinner, It was just Helen and I and my dad as Amy and Mary were staying in at Helen’s mother’s. After my father left for home Helen and I were just settling in to rest after a long day of work. Then the neighbors knocked on the door of the trailer.We had an emergency phone call at their house.Helen’s brother’s wife, Vicki, was killed in a car accident and their ten day old baby boy and three year old daughter were injured.Her car had gone off of the road on a corner and crashed into a tree as she was returning home from the baby’s first doctor visit.
Helen’s sisters Vivian and Muriel both had children close to the time Helen had Amy and Mary.Helen’s brother Leo and his wife Vicki had their children the time we had our last two children.Our families were very close.We had talked of building two houses close together where the kids could play and Vicki and I could work together on a community garden.They had looked at the property next to us and they were seriously thinking of moving closer.We had a lot of the same values and both families shared in a pioneer spirit to grow our own food and build our own homes.Vicki’s death struck our family hard.
Relatives started showing up at Helen’s mother’s house when they heard the sad news.No one told Amy and Mary what had happened, but from the solemn demeanor of everyone they knew it something really bad.Both Mary and Mary became very frightened that something had happened to Helen or me or Adam.When they were finally told of the tragedy they were relieved that their immediate family was safe, but devastated over Vicki’s death.It was June 19, 1984 and Mary was thirteen.
We had purchased a 1967 Checker Marathon while we still lived in West Seattle.It was parked on the side of the road on the way from our second home to my parent’s home.Later, after we bought the Checker, my parents told us that they were sure if I saw it we would buy it and I did.Helen’s mother Gudrun didn’t drive and neither did her Aunt Edith, so we always picked them up and drove them to family get-togethers. Now with our family enlarging, we needed a bigger car and the Checker fit the bill.
Besides hauling us everywhere we put the Checker to work building the log house.I rigged up a pulley and a log ramp that reached the second floor of our home to be.I loaded a log on the ramp, tied one end of a rope to the log and the other end to the bumper of the Checker. Helen was due any day as she drove the Checker in reverse and pulled the log s up.Amy and Mary untied the logs and stacked them on the second floor.
On August 4, 1984 the fourth and last addition to our family arrived.Megan Louise Locatelli came home to take her spot in a basket on the kitchen table in the trailer. We all got up early and worked late into the night.Some people might have felt sorry for us, but we thought we were the luckiest people in the world.The toughness and family closeness that we developed while working together to build our own homes helped keep the disaster of Mirapex from splitting us apart.
After Vicki’s death we got on with our lives and finished the house.Amy and Mary were still staying in the tent when an early snow came in October.By November the 400 square foot recreation room was finished so we moved in there.We had all our beds in the room plus a table to eat on.Our sole source of heat was a wood kitchen stove that Helen also cooked on.After living in the trailer and tent, the recreation room was luxury. As it got colder in the fall we tried shutting the trailer windows at night, but condensation dripped on me from the ceiling.If we opened the windows the drafts were too cold.We moved into the rest of the house a few weeks before Christmas.We only had plasterboard on one side of a wall, but it was a palace to us.
To this day I would never stay in a travel trailer again.There was no shower in the travel trailer, only a small tub, and only a five gallon hot water tank.Baths were torture.When we finally got the bathtub hooked up in the log house we only had cold water at the first.I was really looking forward to a real bath in a real tub so I heated up a large bucket of water on the wood stove and dumped it into the bathtub.My mistake was that I first ran some cold water into the tub.When I mixed the hot water in the result was lukewarm water.I rushed out to the kitchen to heat more water to warm up the bath.When I got done heating the water again and dumped it into the tub the lukewarm water had cooled off and now the result was more lukewarm water.I gave up and got in the tub anyway.I never made that mistake again.
We completed the finishing work on the house in the spring and returned to our satisfying family routine of family get-togethers, camping and fun in general.We now were living only fifteen minutes away from the lot my parents owned on Pipe Lake in Maple Valley.It was a great place to swim and camp.
Helen’s mother had suffered from congestive heart failure for some time and now was spending more time at the doctors and in the hospital for breathing problems.Her doctor was in the Polyclinic on Broadway in Seattle.We made so many trips to the clinic for emergencies and extra doctor visits that we felt we lived there.Eventually Helen’s mother didn’t have the strength to fight off one more bout of bronchitis and passed away a week before Thanksgiving in November of 1986.We didn’t know it at that time, but we would soon be back at the Polyclinic.
That fall Mary had been complaining of cold hands that turned white.In January of 1987 she was diagnosed with Raynaud’s Phenomenon.It is characterized by hands that ache in the cold.Raynaud’s can be a single illness that is nothing more than an inconvenience, or it can be a symptom of more serious illnesses.In January we were hoping that it would remain an inconvenience.Helen had been operated on for Thoracic Outlet Syndrome and now in 1987 Mary was showing signs of the same problem.Thoracic Outlet Syndrome is where the top rib pinches the artery feeding blood to the arm.In serious cases it is almost impossible to raise the arms above the head without severe pain and muscle weakness.The doctors tried physical therapy on Mary but it made the problem worse so Mary had the same operation as Helen where the top rib is removed on both sides.
Mary had been showing signs of fatigue for several months.She just didn’t want to get up to play, but was lying around more and more.Her pediatrician didn’t think that was normal for a fifteen year old teenager.We had hoped the surgery would have cured her, but it wasn’t to happen.After a series of tests at a specialist her pediatrician sent her to, Mary was diagnosed with Systemic Lupus.Where was the office of the specialist?It was in the Polyclinic on Broadway.
Ever since man could think, he has tried to make sense of the good and bad that befalls him.Has he offended some powerful god?Did he not perform the right sacrifice?Man can not accept that misfortune can happen just by chance, a mere roll of the dice, so he looks for other reasons.It was the same for us.After Mary was diagnosed we tried to figure out why such a thing could happen to Mary, the kind and gentle Mary that loved everybody.We thought it might have been the odd smelling rug that Helen helped install while she was pregnant with Mary.After all, it is thought that one reason pregnant women get sick with certain foods or smells is nature’s way of keeping them away from substances that might harm the fetus.We also thought that Vicki’s death and the scare Amy and Mary got that day might have contributed to Mary getting Lupus.Maybe it was all those circumstances and Helen’s mother’s death that triggered it.Maybe it was everything, maybe it was nothing.
February 23, 2009:It’s 4:20 P.M. and I just finished compiling Mary’s history of what drugs she took while she was on Mirapex.It was quite a tedious task and I’m pretty tired and discouraged.We are trying to answer a questionnaire that the lawyers for Boehringer Ingelheim sent us.If we don’t get it done we will have no chance at any financial help from them, but Mary is so tired and depressed that I hate to push her any harder.Maybe we can finish the questionnaire this week by some miracle. Mary is not much help.She gets stressed anytime she thinks about what happened.I pretty much have to do it myself.