A.S. Face 0179: Colleen Seaman
I guess I will start with my dad’s parents don’t much about how they met or when but I do know that they were born in Canada. After they were married they moved to Montpiler, Vt. [the capital]. When my dad was 3 they moved to Barre, the next town over, they bought land that had 2 houses on it. This was in 1935, my grandfather: Adolph Giroux took these two houses and made them into one. In 1942 he built with the help of my uncle a barn. My grandfather worked in granite [Barre is the capital in the USA of granite] he continued to work in granite while farming. In 1956 at the age of 58 my grandmother: Leontine Giroux, had found a lump in her right armpit. She had breast cancer. 16 yrs earlier my grandmother had her 6th and last child. This was unexpected and unwanted; during this time it was not good to have a child in your 40’s.
My grandmother was ashamed and she never showed this child any love. My aunts had taken over the raising of him. Also during the time when she found the lump there was the Korean War. One of my uncles was in the mist of the fighting. My dad was drafted and sent to Iceland. They had him in limbo while they figured out their next step. When they heard about my grandmother they sent my dad home because he was in limbo. My uncle could not go home because he was in the fight.
The dr’s removed her breast and then the cancer spread like wildfire. she died: June 28th. My parents met in 1960. They were at a movie. My mom had been sitting in front of him. He offered her popcorn. 5 months later Oct 15th they were married. My dad: Clement was 28, my mom: Norma Cole was 19. My dad had been engaged once and it didn’t work out. Then his parents stepped in and prearranged a marriage. My dad was due to marry this lady in Sept. of 1960. He got sued for breaking this arrangement and marrying my mom. I was 12 when I found this out. To this day my dad has said 3x’s is the best. My mom had been engaged once before. My mom’s mom: Lillian wanted my parents to start a family. Somewhere along the line my mom was told she could not have children. In 1966 with my grandmother’s pressuring they adopted a little girl. My grandmother named her: Roxie Diane she was born Oct 3rd. Then in 1968 they felt she needed a companion.
They decided to adopt again. There were not many choices to pick. They adopted a little boy born June 1st. They named Im Scott Lee. I would learn in school during the yrs of 1960’s-1970’s adoption was a hush hush thing and they would match the child by hair and eyes of the adopted parents and their files were sealed.
Then in 1972 they got the shock of their lives my mom was pregnant. My sister Rhonda Anita was born March 15, 1973. She was born with yellow jaundice [now they call this blue bonnett] her eyes were covered with a tinfoil type of stuff. Then in late 1974 they got another shock my mom was pregnant again. I was born Feb 16th 1975. My parents were so over the top with happiness. They wanted to keep my mom’s maiden name but the closest they found in books was Colleen. They never thought to change the spelling. They pronounce this: cole-een. My middle name is to show their happiness: joy.
I love Christmas time because my name is everywhere. I forgot to mention my parents birthdays: Clement Leopoul Giroux born Oct 29 1932. My mom: Norma Lillian Cole born Jan 15 1941. In 1976 my grandfather Giroux who never knew about me died in Sept. he was 75 yrs old. Now I will get into the yr that changed all of my family’s lives. I have shared the info I have so I could show that even though I was not alive these events helped mold me into who I would become. The next chapter of my life was the toughest. The yr 1981 I have to add that from the time I was born my mom had several health problems after I was born my mom could not stop bleeding. She was heartbroken because the only option was to tie her tubes. She had wanted more children.
That would be the first in many operations she had had. In 1981 she had another operation.[they had taken everything they could out of her]also in 1981 my sister Rhonda 8 yrs old had started to complain of severe pain after a day of playing. I remember my mom holding her and rocking in the rocking chair she had my dad were worried and had no idea what to do. Barre did not have 911 until the late 1990’s. My parents took her to a neighbor who was a very dear friend of theirs. She told them to take her to the hospital. I remember being in the waiting room and there was a tv on. The show was the Hulk. I was 6 yrs old and everyone acted and said things around me. Thinking it would not matter I was just a child. The thing is that what they said was engraved on my memory.
I remember over hearing the dr say they had just got her in the operating room just in time. She was ready to burst and if that happened she would have died. I was told it was a hernia. Now as an adult I think it was an appendix [maybe they are the same] also that yr my grandmother slipped in the bathroom and hit her head. She lost her memory, my grandfather: Arthur Cole had both his mom and wife to take care of. His mom was 91 and was in the stages of dying. It was too much for him. My mom the younger of 2 children decided to help her father by taking on the challenges of her mother. My dad was %100 with her. They would go to nursing homes and hospitals to figure out what they needed to do. I remember some of these visits because there was no one to take care of me.
We found out my grandmother didn’t slip but she lost her balance. She had a huge tumor. The dr’s believe she had this since her childhood. My grandmother never complained when she felt sick. I remember being told they had to shave her head. I cried. She had the most unique color, a reddish blond mixed with grey. I have never seen this color since. I believe that if Rhonda didn’t dye her hair she would have this special color. Rhonda took after grammy Cole in looks and everything. I look like grammy Giroux except I wear glasses like my mom. While in the hospital with my mom with her just before they were to operate my mom asked her if she knew what day it was. It was May 13 my grandmother’s mom’s birthday. In response she took her last breath and died.
Then in Aug my great grandmother died. The results of these tragedies, my sister Roxie who was spoiled and so very much loved by my grandmother would block out memories, drink [still to this day], probably did drugs but not sure, she lived on the streets [she denies this but she has blocked so much] and she would steal from all of us. When we would go on vacation she would come home and get drunk and I remember her being all over me and being so lovey dovey that it scared me. When she was 17 she met a 15 yr old who she would have a little boy with. She felt she had to marry him but the night before she was to marry my mom overheard her talking to someone in the middle of the night. My mom heard I have no choice I have to marry him. This is the last time we will be able to talk. I love you too.
A series of things happened and she and this other man would get married and have a little girl. Later they would divorce because he cheated on her with her best friend. Later she would marry for the 3rd time. They are still together. My grandfather in 1982 would decide to go to Florida for the winter to get away. He was into the hamm radio and he met these people thru the radio and decided to meet them in person. He would wear his wedding band up until the day h died. He would continue with the hamm radio and he would take up square dancing. He would flirt with the ladies but his heart remained to my grandmother. When I was 12 I realized he was alone and every vacation and chance I had I would go and stay with him. I never knew until he was dying what those moments meant to him. I was the only grandchild who would go alone with her boyfriend and spend a day with him.
We went for a ride and he showed us the house he was born in. We also ate at a restaurant. There was no hurry. In 1996 he was unable to take care of himself and my parents had no choice but to put him in a nursing home. In Sept the week of the 26th [my grandparents were married Sept 26 1932] I made sure that my husband and I were there that week. My grandfather had worked for the railroad and he loved the railroad. I made sure we went to north conway and we ate at a restaurant that had a train set that went around the ceiling then we took a train ride. Then in Dec on Christmas day I didn’t get a phone call from my parents so I called them.
My mom said my grandfather was sick and since he was not there she thought I wouldn’t want to hear from them. Well we were to find out he had pneumonia. He had smoked: cigarettes [not often but he did smoke it], cigars and pipes [he loved the last 2] due to the yrs of smoking he had paper thin lungs. In March I did whatever I could to be there for him. My father-in-law worked for Delta and he had gotten me tickets but they were stand- by. I kept getting bumped off. My mom had called and told me not to bother it looked like he was going to die. I told my mom to tell him to hold on I am trying to get there. My mom had gone to him and rubbed his arm and told him what I said. She felt foolish because after she said these words he bounced back to life. It would take me almost a week to get there. My sister Roxie took her daughter to him and they got to say goodbye. I arrived on Thurs. Feb. 28th or 29th [anyway the last day of Feb.] I came in Boston and my parents and my aunt and uncle picked me up in Boston and we drove back to Barre. I went March 1st to see my grandfather. He was in a wheelchair. I took the very last shot of him. The nurse wanted to put him back in bed. I was in the doorway as she was taking care of him. I didn’t want to be in the way. He motioned for me to come in.
The next day when I visited I knew he was slipping away. Sunday March 3rd. He was chanting and moaning. You could cook an egg on him. They gave him morphine to the limit, my mom couldn’t handle this. I was alone with him. I put a cold cloth on his head he shook his head and it seemed like he knew me. He said hi how are you? But I was to realize he wasn’t there. He did more than once, as I stood alone with him. I heard the chants of pain and I have forgotten the other words but I heard once the word death. I told him from my heart how much I loved him and I knew I had to say the next words and it was hard. I told him grammy had been waiting 16 yrs for him and it was time to go be with her. I told him how much I loved him and I made sure he knew it was time.
The next day I wanted to go be with him but i was trapped by my parents. They decided they could not handle going to him and they wanted to take a ride. I had no choice but to go with them. When we went to see my grandfather my great aunt and uncle [my grammy’s sister] decided to go see him. I took a picture of us getting ready to go up in the elevator. When we got to his door there was a note do not enter go to the office first. He died March 4th 1997. When I was little I would get sick a lot, fevers and throwing up. I got sick so much that my parents were thinking of having my tonsils taken out. They decided not to. I would also get these very painful headaches. These headaches happened when I smelled charcoal. It also happened when and cakes were on a plate with a spoon. When I was home I could not speak whenever this happened. I would get up and force myself to go to bed. When I woke the headache would be gone. I remember once being in a restaurant and I ordered ham. They had put pineapple on top with the juices. I scraped the pineapple and juices off but I had one of those headaches and there was nowhere for me to go. I had to sit there and suffer.
As an adult after listening to people I now know those headaches were migraines I have no idea if this has anything to do with AS but it would show I wasn’t healthy. To let you know how sickly I was I could fake being sick and they believe me. I also was a picky eater but can you blame me. I never knew what would trigger those headaches. My mom would make separate meals for me if the meal she planned was something I would not eat. I never heard of the clean plate club until I met my husband. When I tell people my mom never forced me to eat anything and she would make special meals for me. People would tell me my mom spoiled me. This is not true. She was a mother who knew if I had a choice of eating or going to bed without dinner. I would choose the last one.
This leads me to my reaction to 1981. I was 6 yrs old. I guess I wanted to have control over something. In school at this time there were a lot of kids throwing their lunches away. The school came up with an idea to get kids to eat their lunch, give them good eats awards. I was too clever for them. I have a scrapbook full of these awards. I would watch the teachers and when they weren’t looking give my lunch to the other kids. I had somehow come up with starving myself. One day my mom had a strange look on her face and she made me come over to her. My mom lifted my shirt. The horror on her face I will never forget. I was nothing but bones. My mom took me into the living room away from everyone. I don’t remember her speech I only remember her pleading with me to eat an apple or a banana or a carrot or an orange. I would go to the refrigerator and eat. I knew I had eyes on me. My mom even had my sister Rhonda come to the lunch room to check on me.
Then when everyone was happy I would do it again. I don’t remember how many times I did this but I remember the last speech had scared me. I wish I remembered what my mom had said to me but whatever it was I didn’t starve myself until I was in my preteen yrs. This time around no one gave me speeches no one showed they cared. I starved myself until my husband and I moved to Florida and he said to me if you love me you will eat. I ate and gained weight. The most I ever weighed was 150 pounds. I stopped listening and I started again but I will continue with that later. Let’s go back to 1985. I was 10 yrs old, in the early 1980’s the high school kids would prank call the elementary school with bomb threats. It happened so often that if there was a test and you didn’t want to take it and you wished for the bomb threat it would happen. I think I mentioned I grew up in VT.
The winters are very harsh and very cold. When it was spring going into summer the school would have a field day, a day of bbq and every sport you can think of, egg toss and there were woods in the back of the school. There was a trail, you could either walk this trail or run it. We had to pick a certain amount of activities to do. We even had the 50 yard dash. In 1985 at the end of the day, we had a bomb threat. Since we were already outside they brought the buses to us. I sat down in the grass to wait for my bus. I realized there was something wrong with my ankle. I tried to get the teachers attention but she was too busy to listen. my instincts kicked in.
I had a long yellow silk ribbon from an earlier yr when I we had different classes that had to do a dance for a different culture. My class had to do china and the ribbon was part of that dance. When I got home I told my mom but she didn’t believe me so just to be sure she sent 16 almost 17 yr old Scott to check my ankle he told her yes it was hurt. He checked it while I looked for the ribbon. I wrapped my ankle with the ribbon, since Scott said yes my parents went out and got me an ace bandage. I had to ice and wrap my ankle myself. My sister Roxie had not long ago faked a sprained ankle for attention, so automatically I was doing this too, as time went on the pain grew with me. As I told you when I was little I spent a lot of time in the dr’s office. I got tired of dr’s, I also decided turtle necks felt like I was being strangled. So when I was considered old I made the decisions of never wearing a turtle neck again, to this day I won’t wear one. I also choose not to wear earmuffs or scarves or hats. I refuse to wear boots. We all now wear this is heading.
I got frostbite on my right ear. I also would go in the freezing weather with wet hair. At one point I got sick but refused to go to the dr’s. I would soon have problems with breathing. When I was 10 is when I started to make decisions for myself. When I was 15 I met tom seaman a 17 almost 18 yr old. We started dating and he dropped out of school to be with his dad in Florida. We had a long distance relationship. Then he realized he loved me and drove all night to get back to me. Whenever we talked on the phone I felt like he was still in fl. I slowly moved him in[yes we slept in the same bed[a cot with room for one]he wore everything but his shoes. To get on my parents good side he would get up at 4 am to help my dad with chores.
On may 31 1992 we got married. I was 17 and he was 19 almost 20. This was our 2 yr anniversary and we started dating at 9 pm and that was the time we got married. I had gotten him to go back to school and shortly after we were married he got his diploma. I would also learn I had a minor case of asthma. In 1993 I told my principle we were moving to fl and I got permission to do my exams early and leave school early we never left until July 4th but I wanted out. I hid until we left. I lived in south Florida from 1993-2005. Do you remember the value jet plane crash into the everglades? That was in our backyard. Those who were home heard it and will never forget.
I lived in a mobile home park. The home belonged to my husband and family. When the time came when we wanted to move, we wanted to put a brand new double wide, before was a late 1970’s buddy single wide, holes had started to form in the floors and I found a baby water moccasin in my oven. I was afraid of a fire so I didn’t turn the oven on. I placed a chair in front of the stove and made sure it didn’t go anywhere and waited for my husband to come home. During these yrs I was in my 20’s. I had pains from my ankle and it had also moved to my knee. I started keeping a med ice pack in the freezer for those moments.
One day I was very thin and proud of it, my husband pulled the if you love you will eat card, so for awhile I did just that but then I went back to my old routine when I gained too much weight. One of the problems in south fl is it is always hot. I thought that when it rained it would be cold like in Vermont but even the rain was hot. I would throw up a lot. I also started to get extremely tired and could not figure out why. We tried to have me stay home and take care of the house but I would get so tired I had to take a nap. I know my husband thought I was just lazy. He would come home for lunch sometimes and I would be asleep.
He would tell me you’re tired because you don’t eat right. I also noticed during these yrs that my beautiful toes were now turning and they looked horrible. I blamed it on getting older. Then I started having problems with my back, it was so bad that I had to in a recliner. The pain would get so bad it felt like someone punched me. I would even stop breathing for what seemed like hrs but was only a few minutes. I was so scared I went to the dr’s were they gave a piece of paper with exercises to do and they told me this would help. It didn’t it only made it worse. I soon gave up on dr’s and went back to taking care of myself. Well around 2004 we had gotten a brand new double wide. We also had to put in the paper notice for anyone to claim the home and property first.
Once we did this we could legally call the place ours and proceed to sell. I also have to say I had started to notice I could no longer sit on the floor without someone helping me up. Deep down there was something always nagging me, were all these things connected? My ankle still bothered me so I wondered if there was a connection. The tiredness I never thought to be connected, thru my life I had a problem with canker sores, they were real bad by 2009 I had them every month and I had 3-4 at one time. In 2004 we were getting ready for our big move; over the yrs we had done research and vacationed to the Smokey Mountains. We fell in love with east Tn. crime was not bad and it was beautiful. We picked Greenville to live. We wanted a house after yrs in a mobile home.
We were all set then something happened and we had to wait for 2005 to leave. I woke up one morning and my right eye hurt slightly. I had to go to work [it was a Sunday] Tom took me. It was a bright sunny day. I stepped outside and I felt this horrible pain in my eye. When I got into our truck I turned to Tom and asked him if there was anything he could see. He said it was a little pinkish. I then looked, he decided to pick up some eye drops. When I got home I put them in, oh did that hurt. I decided I had to make a dr app but my dr was on vacation. So I went to see the guy who was taking her place. He looked and insisted it was pink eye. I told him there was no way but he refused to listen to me and gave me drops for pink eye. I went ahead and put the drops in knowing full well it was not pink eye, people who love gore and never get sick at the sight of gore were sick when they saw my eye. It became bloody looking. I went back to the dr. he took one look and refused to do anything.
He said I needed an eye surgeon, and then he gave me a list of names and told me to pick one and tell them this was an emergency. I was wearing an eye patch because the pain was so bad and it looked just as bad. At this time was when I started pleading with GOD to take me home. The pain was unbearable. I picked a dr at the hospital. This was easy for me to get to, the dr told me I had iritis and I needed to go thru a series of eye drop therapy. This would take 6 months. I asked how did I get this, he told me:[I am not kidding]in normal healthy people the body gets confused and it will attack itself. In your case it attacked your eye. They never did blood tests or anything like this. I assumed he knew what he was talking about. After I was done with the therapy in Feb. 2005 we moved to tn. when we moved from fl we went the long way to Greenville, this is where we planned to live. I should say we thought we should live.
During the move one of Tom’s friends drove the moving truck we rented and we towed our truck while we drove our chevy blazer with odds and ends in it. Instead of going thru the carolinas because of a huge mountain. We figured going thru georgia was a better option. During the move our dog at the time was laying on my legs[he weighed 40-50 pounds]well I didn’t understand why my lap hurt so much. It would off and on from then on. We were going to settle in Greenville but Tom found a job 7 days after our move, problem was it was in Knoxville, a 90 minute drive 1 way, it became too much for Tom. So we decided not to continue looking for a house, we decided to look for a trailer[mobile home]we found one we liked and the plus a driver for the company had some land for sale in Rutledge.
There was almost 6 acres and it was so much closer to Knoxville and to make it even better we would find that we would be living close to the Smokie Mountains, Kentucky ,and North Carolina. It would be the perfect temporary home. We still have the dream of owning a house. Now we want to build but with the economy so bad we are stuck here for know but that is alright. Someday we will live our dream of living in the mountains in a home we built. The home will have everything I need, someday. Anyway let’s get back to my health. I would have an occasional pain attacks but nothing to serious. The dr we found was a dr who is Asian and was a bit excessive with your weight. When I first saw her I weighed 150 she made it clear I needed to lose the weight the next time I saw her I had started starving myself again because nothing else worked.
I got sick 1 week and lost 9 pounds, so I went back to starving myself. When I next saw her I weighed 115 pounds she looked at me like I still had a long way to go, my husband had his own issues with and decided to look for another dr. So at the end of 2007 we had a new dr. in the beginning of 2008 around March I think I had something weird going on with my eyes. I had the symptoms of iritis but it lasted only a little bit. I wanted to be sure so I went to the new dr and asked for an eye specialist to check my eyes. They could not find anything wrong with me. I am still not sure what happened, then later that yr around Aug going into Sept I had a new issue that scared me. I was bleeding from my back end. My husband and I planned a massive vacation that was around this time.
The trip was we went to the bottom of Vt and the drive was around 18 hrs from Rutledge to Bennenington. We had arranged ahead of time a place to stay the night and they had a key waiting for us. This time we had a small dog Pete, the yr before max needed to be put down he was 14 yrs old and was in a lot of pain. During the months before we had talked about if we got another dog what we would want. I said over and over again I want a dog that is small like the cats[at the time we only had 2:jimmy and timmy that we got from the place we rented in Greenville]. I didn’t want one that was bigger because the cats would be older and they were the big bosses.
Well just a few months before putting max down we had been at the vet having max checked and getting meds for him, max had been with us since 1993 a couple of months before we left for fl. We wanted the best for our first child. Tom was outside because it was hot inside. I come out with max and tom has this small little puppy in his arms. The dog had come out from the grass and made sure tom knew he was his new daddy. We checked with the vet, he wasn’t one of theirs. We left them so they could make sure he didn’t belong to anyone. Pete has a black spot on his side that looks like a heart and sometimes looks like lips. Tom and I believe God brought this dog to us, he is the size of the cats just like I wanted. He now thinks he is a cat. He is so loving. He helped distract us and get us thru the grieving; anyway as I started to say Pete was with us so we had to make several stops.
The following day we spent most of the day in Bennenington visiting a friend I had not seen since 1993. We met her family and went site seeing, a great day and so much fun, then we headed to Searsport Maine to visit my brother. I wish we could have had that time alone but my parents were there too. They had our key to our room. We arrived around midnight. I had taken my scale on this trip to keep track of my weight, by this trip I weighed 114-113 pounds. I was very neurotic at this point because of that stupid dr. After the trip in Maine we went back to Vt but this time we went to my hometown and stayed with my parents for part of the time and with his mom for part of the time.
I won’t get into this trip but I will say I was scared about my but bleeding that I stupidly told my mom in hopes she would be motherly and give me some advice and support instead she told my dad, brother, his wife, and my sister. Thank you mom! I was so angry but my sister did the bawling and mom loves you so much she is worried about you. My mom is so much like a child that eventually I let it go.[I say this because there is more to come in this relationship]when I got home I had Tom make the appointment for me because he never gave me the dr’s number and I needed him to arrange around his work, in case I forgot to mention this I don’t drive but while in Greenville. I started to practice and in 2007 I got my permit first time. Yeah! So I needed Tom to take me. I saw the dr and she sent me to a gynecologist. The dr there wanted to do a colonoscopy. So in Dec of 2008 I had this done, I found I had a hemorrhoid.
Now we move on to 2009.the yr that would change my life forever and I will never forget. The end of March 2009 I had diarrhea. I never had it before so I didn’t know that 5 and half days was too long. On the half day my right leg started to kill me. I chose to do as I always had to take care of myself. I wanted to try everything I could think of, everybody pleaded with me to go to the dr but I ignored them. I knew my body better than anyone. Right? Wrong, as time went on I got to the point it would take me a half hr to get from the couch to the bathroom, not good when you need to pee real bad and you can’t hold it. A few weeks before I got sick iI weighed 112 pounds. When the diarrhea hit I could not get food down. I just could not eat. I didn’t feel like it and this only got worse when my leg started to bother me. I would use an old swifter that was broken and heading to the trash to help me. It would take me a full hr to get from my bed to the other end of the house. I know this because I tried baths to ease the pain and the bath in my master bathroom was too high and I could not get in and the other one was more normal. I weighed myself once during the first few days and at that time i weighed 109 pounds.
So I think by the time I got the help I needed, I weighed probably 100 or less. The Mon before the Tue that would mark one week since my leg started to bother me I no longer could take a shower. Tom had given me orange Gatorade just to get something in me and by that Mon my mouth felt and tasted like sugar, I started to beg for water. If you know me you know I hate water, this was a red alert to tom that this was serious and he might lose me. I gave in and told Tom to go ahead make an appointment. He made it for Thurs. April 16 at 9 am. The Tuesday before I thought my right foot looked funny but said nothing, at this point I was staying on the couch[our couch is a recliner couch] I slept sitting up. Then Wed when Tom came home he brought home krystal burgers[they are like white castles,small burgers]he was hoping I would get something down.
I decided to ask about my foot, he freaked out and got the ice pack I kept in the freezer. I am not kidding the second[not minute second]the ice touched my foot and the other swelled up, now Tom is in hysterics and wants to call 911. I talked him out of doing this [I am so thankful I did, I will explain soon] I told him I have the app in the morning, alright that morning was a nightmare. I needed Tom to help me go to the bathroom, this man really loves me. I was humiliated. He also dressed me. I thought I was going to come home and that wearing shorts was an easy way for them to see everything. Now it was a very cold morning. I stupidly thought our sliding glass door was the best way to get me out.
The pain I was in was so bad every time I moved I screamed like a banshee this screaming haunts: Tom, Jimmy, Timmy, and Pete, people who say that dogs and cats have no memory are wrong. Tom wanted to carry me but I could not handle this. I picked this way because the couch was next to the sliding glass. We had a chair on wheels and rolled it out. Then I had to figure out 7 steps[oh I forgot my shoes didn’t fit so I wore Toms open toed slippers]now we never thought about how I would get out. I chose the ford 150 even though we had a chevy blazer. I chose the truck thinking I could get in easier. I was so stupid, anyway I got in. I remember looking back at the sliding glass and all 3 were lined up watching.
We got to dr.bevelheimer’s and barely got me out[we borrowed there wheelchair.dr bev took 1 look and said I waited too long there is nothing she could do for me. She said we needed to go to the hospital [about 1or 2 miles down the road] she told us she would call ahead and have someone waiting to help. She sent 2 ladies out to help get me back in. We get to the hospital and we managed to get me out and into the waiting room. While I sat in a wheelchair in the waiting room Tom parked the truck. They called my name and we went into this small room and answered some ?’s and they took my temperature then we went thru some doors.
They wanted me to get on a gurney and I was crying and asking if they could check me where I was. They told me no we need you on the gurney or we can’t help you. First I need to say [this is why I was thankful we didn’t call 911] this is a teaching hospital, university of Tenn.for those who don’t know what a teaching hospital is,this hospital has all new info and if you are admitted you get a private room and someone can spend the night with you. There was 2 lady paramedics students that were in training that was standing near me.1 stepped up and said we will help you [they were my angels and I wish I knew who they were I would love to thank them] she was very muscular [I think that is the best way to say this] she told me it was alright if I dug my nails into the other was very timid and didn’t talk.
This 1 told the quiet 1 to grab my feet she took my upper part and I screamed and I know I dug into her. I think it was around 9:45 when everything started. I was in the hallway, at 1 point we were told that because of my screaming and the pain and not knowing what was wrong with me they had me in the trauma center, yes there was people walking around with blood all over them. The first thing they did was take my rings off and give them to Tom. Then they undressed me, the 2 paramedics students were in there. I wasn’t going to go into details but it is important so I will. They put a catherder in me. I think people in the next county could hear my screams. They had me in and out of x-rays, ultra sound and 1 problem they had was my heart was out of control. I could tell it was serious by the way the nurse acted. I have a feeling it was beating so fast I might have died.
When I looked at the clock again it was 11 pm, they decided to have me admitted. When they found a room they took me there and the nightmare of being moved from the gurney to the bed. The nurse was a sweet heart and knew I had not eaten and knew I didn’t feel good and she suggested pudding. I don’t remember if I expected or not, Tom went home to take care of the babies. He said he would be back but he fell asleep and didn’t return until later that morning. I was gone at least 6 days and everyone could not understand were I was. Pete was shedding like crazy and he didn’t act right, the cats passed and wanted to know where I was.
During my time in the hospital they took lots of blood. I had a group of interns come in with the dr. they had asked me when this started. I had decided I would finally find out what had happened to me at age 10 maybe this was all connected. So I proceeded to tell them my story. Tom interrupted me and said they don’t want to hear that. I told him to shut up and let me talk. I am so thankful I did tell them because it helped them to figure out what test to run and how to help me.
I had not taken a bath in a long time this was one thing I pleaded for. i have to say I was very modest but afterwards and still to this day i am no longer. I now had the problem of my brain and right leg not communicating. If I wanted my leg on a pillow I had to take my hands and place it there. The shower I did get and I got to shave but there was a nurse helping me, another nightmare was i had to use a bedpan to go to the bathroom and I needed a nurse to help me clean up.
The awesome part was at one point around 9 pm I wanted the nurse went to every floor until she found it for me. Tom will never forget this and brings it up often. When I left Tom had Pete outside in the truck, what an awesome greeting. I had to have a nurse come an re teach my brain and leg to communicate and I had to learn to walk again, before I was to leave I met my rheumatologist dr park. I had a walker from the day I left the hospital.
Then if had a commode, I need to backtrack to let you know that I was unable to sit on my own toilet I had to hover because it was too low. This commode sat in the tv rm until I was able to get to my bathroom and live a more normal life. The commode is now over the toilet, the height and arms are great, I also use a shower chair. The walker sits near my bed now and I use for when I get out of the shower for extra support, when I was able to walk with a cane I would try to walk without it. I was so happy until I was told by dr park that I should always walk with the cane to prevent more damage.
I was to find out the right hip was missing cartilage and this was where most of the issues were from. While in the hospital I was told to learn to meditate and not worry or stress out, if I did i would end up back in the hospital. I was also told that the meds they would put me on would not cure me but make it so I would not feel the kind of pain I felt when I was admitted. I was also told that the meds would not take all of the pain away.
I was told they think they knew what was wrong with me, that I had an auto immune disease. At first they thought Crones then they ran more tests. I was told if was positive for the HLA-B27, before leaving they said they thought I had ankylosing spondylitis [it would be aug when they confirmed this] they had also told me that they wanted to get me out of the hospital quickly before I got hospital sick. I was on prednisone off and on during that yr, and then dr park made an mistake about how long I was to be on it. I got mooned faced in 5- 6 months I gained weight. I weighed 175 pounds and it would take me 2 yrs to lose any of it. I now weigh 157. I have trouble with not being able to starve myself but the meds stop me from doing this because some need food with them. Later that yr I had a spinal tap done on my hip.
They messed up a nerve or vein because when the weather is bad I feel it. In the 2 yrs I have started having trouble with concentration and I forget things more, and I noticed a lump on the back of my neck, I first asked dr bev but she insisted it was fatty tissue but this yr it started to bother my spine so i talked to dr park, she also thought it was fatty tissue but we decided to have an ultra sound done because an x-ray would not show anything. I also had my spine x-rayed, the results: no fatty tissue and my neck is straight when it should be curved and my spine is curved where it should be straight. Dr Park is not sure what this is. She thinks maybe tight muscles, so she has me putting heat on it and taking: cyclobenzaprine. I will see her in Dec and if there is no change we will try something else. I have also dealt with depression.
The beginning of this yr I had seen dr bev about something [I don’t remember] anyway while waiting I looked at my fingers and realized they have started to turn. I said something to dr.bev and her response was I have too much time on my hands, yea right. I now have less confidence in her when it comes to these things. I just had my yearly exam and found out I have low thyroid, my sister has thyroid problems and afterwards my mom found out she does too but a lot more miner case. I have in the last 2 yrs started to have no desire to go anywhere.
I have made lots of friends thru support groups online. I was lucky enough to meet 3 of my friends in person, but as of lately I have shut down my computer has had some issues but I seem to not to want talk and be left alone. The beginning of 2011 I became needier for my husband, so now he goes to all my app. on may 31st we celebrated 21 yrs together and 19 yrs married.
I married him at 17.my thoughts at the time: we don’t know how long we have on this earth why waste it. I never knew how important those were until 2009, soon after getting out of the hospital I applied for my ssd, there was a mix up with how much Tom earned and since it was their fault they didn’t make me reapply. I got it because of the hospital info and the in home nurse. I went thru the water and pt but because of time conflict I stopped and dr park told me she was glad I had stopped because she felt it was not helping me. If I go somewhere where you would stand for a long time I use a wheelchair [our church gave this to me] I no longer go to church.
The 2 hrs in/on one of those benches I could not handle plus I am always so tired. I have realized dr.bev does not understand AS because while we were talking this last time we were talking about vt and she suggested I go for a visit, i kept my mouth shut, vt is too far away and I have found that more than 2 hrs I am unable to handle, overnight trips are a nightmare, if can’t take a commode, shower chair, and the walker everywhere I go. I happy being in my home. The week of may Tom surprised me with 10 days off, up to this point I would talk to my mom every mon and fri. if i didn’t call [because of something] by a particular time she would call nonstop until I answered. I told my mom not to call during this time Tom was off because I would not answer; she could not handle this and proceeded to call. I refused to answer, so she got people involved, worrying everyone.
The final straw was she called my friend [the one in brattleburro]my friend called me and told me to call her. I found out thru my mom’s best friend who I call aunty that she had a big smile on her face because she called my friend. She was acting like this was a game, like she was a spoiled child who had to have it her own way. I have not called her since. I will write occasionally but I feel my health is more important. I don’t need stress and childness. I keep hearing the dr’s say if I get stressed I will end up back in the hospital. I must say i feel better this way.
I see changes and I am not certain where AS will lead or what will happen next, my hands and fingers hurt and are swollen and for about 6 months my feet have also been swollen. I am currently taking remicade in hopes this will help with the swelling. I take methrodrextate every fri,10 2.5 mg every fri I take folic acid every day but fri. I am also on cymbalta for pain as well as depression. I take[I forgot]for acid reflux which I got from the prednisone. I also take sulfazine 2 500mg 2x’s a day.i take 2 aleve 2x’s a day. I also take 1 vitamin d3 every morning. I also take 2 calcicium citrate.I used to take humera until last aug or sept. I have refused the prednisone because of all the bad side affects I have gone thru.1]my asthma is back with a vengeancewe had plenty of animals just show up at our place thru the yrs.
We have had lots of cats come and go. In 0ct of 2009 one of the cats had 2 babies on our back porch.1 was white so we decided when they were old enough we would bring them in, my husband named them sugar and spice. As sugar grew his colors changed but he does have all the different colors of sugar. They only know me as being sick.jimmy-was affected the most out of three, he follows me everywhere and he checks to see if I am breathing. I now call him my guardian angel, it took timmy a yr and a half before he would come and sit on my lap. Pete never leaves my side.I can no longer clean my home because i get sick. I can only do one task, if I try to do more I get feverish from head to toes, dizzy, and tired. I was told I did to much, my husband doesn’t want anyone here so he juggles his job, doing yard work, taking care of our chickens and goose[the goose is one who just showed up one day and loves the chickens so much he made our home his home. We made a pond for him to enjoy], the house cleaning and he cooks dinner 98% of the time.
I still cook once in awhile, my hands bother me more and more as time goes on.there has been 2 deaths in the last 2 months that have affected me so much.1 from leukemia and a friend, she was only 33 yrs old, never married, she had 2 dogs, she was a nurse. The second was a 38 the same age as my sister and a stranger I wish I knew sooner. She died from complications due from AS, at first the sadness I felt was they both were young and never married, what will happen to their dogs?
I now understand their paths were planned long ago and they were not to get married. I now feel jealous. I so want to be free, to never feel pain again, to never be tired again, to never have another asthma attack, to never be scared again, to never worry again, to never take meds again, to not have a fuzzy memory. I have pleaded so much in my life to GOD to take me home but I am still here. I can tell Tom my wishes but I have told him about my wishes if I ever get to the point these women were in. I don’t want to be in a hospital and I don’t want to be in my home. I want to be in the mountains when the time comes for me to go Home. I want to be cremated and when his time comes I want our bodies from this life to be mixed together and spread in the mountains, he liked my idea after I explained I want us to be forever together here on earth and in Heaven. I know this morbid but when I was in the hospital they asked me if I had a will or if I wanted a living will. I have thought about this for a long time.my memory is slowly going, I remember the past to a point but my current memory is fading and my concentration is gone.
Thank you for taking the time to read my long journey.
Rutledge Tennessee United States of America