I've felt a lot of strong emotions the past couple of weeks. We started swimming lessons on June 17th, 2013. As I was sitting by the pool watching my boys learning and laughing, I felt a deep sense of joy and gratitude. I felt so grateful that I had the strength and energy to drive them to lessons and baseball that week. My body felt sick and weak, but I was able to push through and provide them with opportunities to learn and grow. I take such enjoyment from these practices that seem so common in our culture, but to me they are mountains that I have been blessed to climb. The joy and confidence that I see building in my children is the best motivation to keep pushing. Although its tough at times and they fight in the backseat the whole drive there and back, I am grateful for every moment because the tough times make the good times that much sweeter.
Another task we took on was a Dr appointment last Friday, June 21st. Oh, how I dread them. I always hope I'll know what to say and wonder if he will have some help to offer this time? We have to keep trying, we cant give up even though it feels completely hopeless at this point as it has for so long. I have the following words in vinyl letters on my wall where I can see them many times throughout each day, "Everyday holds the possibility of a miracle." I have to believe that this appointment could bring me closer to that day....
As relieved and grateful as I was a little over a week ago, I was equally devastated and humbled this past week. One thing Ive come to know for sure is that after a cluster of "better" days, come some really debilitating days. Last Sunday, I got slammed and had to leave early from church because I was unable to bear the searing pain spreading through my tail bone and legs any longer. I was unable to sit, stand, or walk. The rest of the week turned out to be even more difficult as the relentless fatigue, cognitive issues, and pain took hold. I was brought down so fast, just like that, no driving, no cleaning, absolutely nothing it seemed, just holding on and getting through it for the past week. How quickly I'm taught that I have absolutely no control over anything, but I have these amazing little men to take care of so I choose to push on and make the most of what I've been given and do the best I can. In spite of it all, I am still so grateful for everything I have and for my beautiful family and life.
Getting back to my story, the events of early 2003 are extremely difficult for me to think about and relive. I hope my experiences will mean something to someone out there and I hope my family will appreciate a record of the events that were so difficult, that helped us to become the family we are today.
By the beginning of 2003 I was experiencing symptoms associated with a difficult pregnancy and managing gestational diabetes. I had my first Braxton hicks contraction right before Christmas 2002 in the middle of wrapping Matt's Christmas presents. I dont know why I remember that, but I do, I was surprised, obviously being my first pregnancy, I had never felt that sensation before. It wasn't a big deal, I just stopped what I was doing and rested and they went away. I had read about these type of contractions, they were normal and I wasnt due until April 1st so I had a while to go.
Over the next couple of months my pregnancy continued as before, fatigue, nausea, vomiting, unquenchable thirst and all that fun pregnancy - gestational diabetes stuff and by March we were starting to think about signing up for a birthing class and planning to get a bag ready for the hospital so that we would be ready to go when the time came. We never had the chance to do either. On March 1st, the Braxton Hicks contractions were coming a couple of minutes apart and they were starting to hurt. We decided to go to the hospital to make sure everything was OK. Upon arriving at the hospital they began monitoring the contractions and the babies vitals. Thankfully the baby was doing well, the contractions were coming a couple of minutes apart, still painful, and I was dilated to a zero, 0% effaced (I don't know. Maybe they told me a 1, just to make me feel better, but basically nothing was happening to suggest real labor.)
I was four and a half weeks early, they told me if I was more than 5 weeks early, there was a strong possibility that the babies lungs wouldn't be developed completely and if I was less than four weeks early the babies lungs would be fine. Between four and five weeks early is a gray area, my Dr. would have to decide what to do. The problem was that my Dr. was out of town so the Dr. on call decided to give me a shot of something (I don't remember what it was called) to stop the contractions. They gave me an injection in my hip and soon after the contractions stopped. They kept us there for a time to see what would happen and within about twenty minutes, the contractions returned as steady as ever. A second injection was given, contractions stopped, a short time later they returned. Finally a third injection was given and we were told three injections was the most they could give so they sent us home. I didn't sleep at all that night because the contractions returned and by the next afternoon, they were so painful that I couldn't stand it anymore. We called the smaller hospital in Meridian, Idaho that we had visited the night before and they sent us to St. Luke's in Boise because it has a neonatal intensive care unit in case the baby's lungs weren't fully developed. The rest of that day brought trauma and heartache I never imagined would ever happen to me or my baby.
Sunday, June 30, 2013
Wednesday, June 12, 2013
Friday, June 7, 2013
Why Light out of Darkness?
As I look up at the night sky, I'm in awe at the beauty of the stars and so incredibly grateful that they are there to break up the darkness. Even during the darkest times in our lives there is always light. I sometimes feel like the darkness will swallow me whole and I will just cease to exist. I choke on it and struggle to breath. I ache for peace and the warmth that the light brings. The darkness is thick and black, it longs to engulf me and pull me in. It is powerful and relentless, it never quits. The light is stronger. How easily it pushes through the darkness and commands it to disperse. I seek the light. I need the light. I am so incredibly grateful for the light and the people around me who help me to see it in my life.
#1 The Beginning (February, 2002)
I get asked a lot what's going on with me. I know people are genuinely concerned for the most part. Usually I brush it off or change the subject. I do this because I am a very private person, because it makes me sad to think about it, and because its really hard to explain. But sometimes I hear what people think is going on or what they've heard is going on and that's really difficult for me to hear. I dont want people to assume or try to guess whats going on so rather than explain it to everyone separately, I'll explain it here. Sharing this makes me feel extremely vulnerable, but I hope my story will help others who are dealing with hard things in their own lives and help me to find peace as I continue on this journey.
One thing I've learned is that we all have different challenges as we go through life, but the feelings that these challenges bring are the same. Feelings of loneliness, hopelessness, loss of control, dispair....But on the other hand, these challenge have the ability to bring us gratitude, a love for life and those around us, greater joy than was ever possible before, and a strength that could never be achieved without such hardship. Everyday I choose which way to feel and sometimes when the bad feelings threaten to snuff out the good, I just hold on for dear life and wait for the storm to pass. You see I will not let this tear me apart, I will fight every step of the way to choose happiness over dispair and hopelessness. I will emerge brighter and stronger after each setback, devestating as it may be, and choose to focus on the positive and the growth that life brings, I hope you will too.
My first sign of trouble came a little over eleven years ago and I didnt even see it as trouble at the time. Prior to this point, for the first 20 and a half years of my life, I had experienced nearly perfect health and I took pride in that fact. I remember saying at times, that I had never been to the hospital or emergency room (except for the one time when I tore my hamstring sophomore year, but that's another story). As a child I fit in with the other children, never struggling to keep up in anyway. In highschool, I was as involved in as many activities and athetics as I could possibly be. From volleyball to track, cheerleading to drillteam, class leadership positions to youth government and business professional of America. I did everything and I excercised several hours a day and never felt any struggle to do so. Oh how you notice what you once had when its taken from you so suddenly.
As I moved on to college, I continued to be active and content as I was able to attend classes full time, work part time, and spend time with amazing people who I will never forget. During my second year of college, I met my husband, Matt. I knew immediately that he was the one for me and he still is. He has been there for me every step of the way and I love him more than I can say. Life has a way of counteracting the bad things that happen with really good things and Matt has been my constant source of light in the darkness that I've experienced. I would choose to go through it all again just to have him in my life. Look for the good in your own circumstances. Its always there somewhere. Shortly after I met Matt, I got my first taste of what it feels like to lose your health, but I had no idea what was still to come.
I was back at home, living with my parents for a couple of months before Matt and I got married. The first thing I noticed was the fatigue. I remember fighting to wake up in the morning to go to work. I realize a lot of college age kids don't like to wake up in the morning and I really didnt like to either, but this was different. I remember being dead asleep, but being aware that I had to wake up to go to work, and literally not being able to wake up. It feels like you're trapped under a thick haze and you cant push through it or get out of it. Waking up involves fighting against this haze until you finally break the surface and wake up. As you wake up, the haze is pulling at you to come back and you have to give it everything you have to wake up. Once you wake up, you have to fight to stay awake, you feel like you havent slept in days and its a fight throughout the day to stay awake and function. The thought is always on your mind of when you can go to sleep again. You never feel rested. This was my first taste of what fatigue really is, it was real and outside of my ability to control. I couldnt work or exercise, it would have been truly devastating had I know that I would still suffer with it eleven years later. Within a couple of days, I noticed the glands in my neck were swollen and bulging out of my neck like Frankenstein. My mom took me to the Dr and it was an easy test and then diagnosis of mononucleosis. I talk about the diagnosis because it was the first and last concrete diagnosis I would get over the next eight years.
I had heard of mono and known people who had mono. I wasnt too worried about it. The doctor said I had to sleep a lot and not overexert myself because mono attacks your spleen and there's a risk of rupture if you overdo it. He said it would last for a few months and then I would be back to normal. I was told that its a virus and there is no treatment for it other than rest. I thought I would be fine, I didnt know that this was just the beginning.
One thing I've learned is that we all have different challenges as we go through life, but the feelings that these challenges bring are the same. Feelings of loneliness, hopelessness, loss of control, dispair....But on the other hand, these challenge have the ability to bring us gratitude, a love for life and those around us, greater joy than was ever possible before, and a strength that could never be achieved without such hardship. Everyday I choose which way to feel and sometimes when the bad feelings threaten to snuff out the good, I just hold on for dear life and wait for the storm to pass. You see I will not let this tear me apart, I will fight every step of the way to choose happiness over dispair and hopelessness. I will emerge brighter and stronger after each setback, devestating as it may be, and choose to focus on the positive and the growth that life brings, I hope you will too.
My first sign of trouble came a little over eleven years ago and I didnt even see it as trouble at the time. Prior to this point, for the first 20 and a half years of my life, I had experienced nearly perfect health and I took pride in that fact. I remember saying at times, that I had never been to the hospital or emergency room (except for the one time when I tore my hamstring sophomore year, but that's another story). As a child I fit in with the other children, never struggling to keep up in anyway. In highschool, I was as involved in as many activities and athetics as I could possibly be. From volleyball to track, cheerleading to drillteam, class leadership positions to youth government and business professional of America. I did everything and I excercised several hours a day and never felt any struggle to do so. Oh how you notice what you once had when its taken from you so suddenly.
As I moved on to college, I continued to be active and content as I was able to attend classes full time, work part time, and spend time with amazing people who I will never forget. During my second year of college, I met my husband, Matt. I knew immediately that he was the one for me and he still is. He has been there for me every step of the way and I love him more than I can say. Life has a way of counteracting the bad things that happen with really good things and Matt has been my constant source of light in the darkness that I've experienced. I would choose to go through it all again just to have him in my life. Look for the good in your own circumstances. Its always there somewhere. Shortly after I met Matt, I got my first taste of what it feels like to lose your health, but I had no idea what was still to come.
I was back at home, living with my parents for a couple of months before Matt and I got married. The first thing I noticed was the fatigue. I remember fighting to wake up in the morning to go to work. I realize a lot of college age kids don't like to wake up in the morning and I really didnt like to either, but this was different. I remember being dead asleep, but being aware that I had to wake up to go to work, and literally not being able to wake up. It feels like you're trapped under a thick haze and you cant push through it or get out of it. Waking up involves fighting against this haze until you finally break the surface and wake up. As you wake up, the haze is pulling at you to come back and you have to give it everything you have to wake up. Once you wake up, you have to fight to stay awake, you feel like you havent slept in days and its a fight throughout the day to stay awake and function. The thought is always on your mind of when you can go to sleep again. You never feel rested. This was my first taste of what fatigue really is, it was real and outside of my ability to control. I couldnt work or exercise, it would have been truly devastating had I know that I would still suffer with it eleven years later. Within a couple of days, I noticed the glands in my neck were swollen and bulging out of my neck like Frankenstein. My mom took me to the Dr and it was an easy test and then diagnosis of mononucleosis. I talk about the diagnosis because it was the first and last concrete diagnosis I would get over the next eight years.
I had heard of mono and known people who had mono. I wasnt too worried about it. The doctor said I had to sleep a lot and not overexert myself because mono attacks your spleen and there's a risk of rupture if you overdo it. He said it would last for a few months and then I would be back to normal. I was told that its a virus and there is no treatment for it other than rest. I thought I would be fine, I didnt know that this was just the beginning.
Wednesday, August 1, 2012
Bad Day
I had a rough day today. I wish I didn't have those, but I do. My rough days aren't days when i'm feeling very sick or having lots of pain, that's everyday. My bad days are days that I don't cope with my illness as well as I want to. They're days when I have a hard time understanding why I have to go through this and what I did to deserve this life of pain and suffering. I hate days like this. I feel guilty when I have these days because I feel like I should know better than to feel this way. I do know better, I know I have so much to be thankful for. I know I didn't do anything to bring this on myself. I know i'm a strong person and that I can handle whatever this illness throws at me. Even though I know these things, I still have bad days. I think these days are my mind's way of grieving.
Grief is a part of life and i've found that it's a big part of living with chronic illness. We feel grief as the result of a loss. I greive because I have lost my qaulity of life and I don't know if or when I will ever get it back. I feel sad because this isn't the life I always thought I would live. I even feel a little bit angry because I know this isn't fair. I feel powerless because I can't figure out a solution to this problem or how to fix it. I feel hopeless because I can't imagine feeling like this everyday for the rest of my life. I feel impatient because I think i've lived this way long enough to prove myself and yet the suffering continues. I feel guilty because my family has to deal with having a sick wife and mother. I want so much more for them. I hate days like this!
I know from experience that tomorrow will be better. Tomorrow i'll be more positive. Tomorrow i'll have a renewed hope and faith that I will be better one day. Tomorrow i'll focus on the good things in my life and i'll know that I was put on this earth for a reason. I'll remember that my life is meaningful even though I can't do everything I used to do or what I want to do or even what I need to do. I'll understand that no one else could ever love my children or my husband the way I do and that I was meant to be with them, sick or not. I'll do my best to love them the best I can. I'll continue to figure out ways to make my suffering count and how to make the world a little bit better. I won't have another bad day tomorrow.
Grief is a part of life and i've found that it's a big part of living with chronic illness. We feel grief as the result of a loss. I greive because I have lost my qaulity of life and I don't know if or when I will ever get it back. I feel sad because this isn't the life I always thought I would live. I even feel a little bit angry because I know this isn't fair. I feel powerless because I can't figure out a solution to this problem or how to fix it. I feel hopeless because I can't imagine feeling like this everyday for the rest of my life. I feel impatient because I think i've lived this way long enough to prove myself and yet the suffering continues. I feel guilty because my family has to deal with having a sick wife and mother. I want so much more for them. I hate days like this!
I know from experience that tomorrow will be better. Tomorrow i'll be more positive. Tomorrow i'll have a renewed hope and faith that I will be better one day. Tomorrow i'll focus on the good things in my life and i'll know that I was put on this earth for a reason. I'll remember that my life is meaningful even though I can't do everything I used to do or what I want to do or even what I need to do. I'll understand that no one else could ever love my children or my husband the way I do and that I was meant to be with them, sick or not. I'll do my best to love them the best I can. I'll continue to figure out ways to make my suffering count and how to make the world a little bit better. I won't have another bad day tomorrow.
Thursday, July 12, 2012
If You Dont Have Your Health...
I've often heard the phrase, "If you don't have your health you don't have anything." I woke up this morning, as I have countless other mornings without my health. My health has been absent from my life for nearly a decade. I will turn 31 this month and still be without my health.
Every morning I open my eyes and I am hit again with the reality of this situation. I say "this" situation because it can't be "my" situation. This can't be happening to me, but it is, and it might not ever go away, so it's time for me to embrace it.
I lay in bed, waiting for the nausea to lesson, I assess the pain that moves through my legs and arms and abdomen, this will determine how hard it will be to get through the day. I was up most of the night because the pain was too much to fall asleep or stay asleep for long. I have to wake up now. I drag myself out of bed and begin to walk, the stiffness will subside within an hour, I hope. I make my way into the living room, the bottoms of my feet feel bruised with every step, hmmm, haven't felt that for a few days. As I turn the corner, three sets of beautiful, bright, blue eyes are staring at me. Three handsome, little men are looking at me, waiting for me, depending on me. I smile, I may not have my health, but I have them. As I look at them, it feels like I have "everything". I will myself to make pancakes and eggs for them today. I can't eat for another hour because of the meds I choke down 4 times a day, but I watch them eat and laugh and I feel satisfied that I was able to do something for them. I will have to do the dishes later because my energy is spent, I have to lay down on the couch for a while now. I look around at all the work I need to do, I don't understand why I can't just get up and do it, why can't I just do it now? The boys take their plates to the sink and sit by me, we read stories for a while, although it's hard for me to read because I'm out of breath after a couple of pages. I keep going though, my two oldest are old enough to read so they take over after a while. My two year old laughs and the sound warms my soul. I look over at the massive pile of clean clothes in the corner of the room. Maybe I can fold for a few minutes. I move to the floor and get to work. The pain and stiffness in my hands and arms is less than helpful, but i'm used to it, I need to get this done. I know my husband will have to put some of them away when he gets home, but i'll make a trip here and there throughout the day and hopefully get most of it done. I smile as I think of Matt. Once again, I feel like I have "everything". Half way through the clothes, it's time to lay down again, who knew that folding clothes could make your stomach hurt so bad. The older boys want to play with their friends now, but they need to do thier jobs. I tell them they can play after they clean their room, you'd think i'd asked them to clean the ENTIRE house with how they react. I try to be patient as I breath through the pain and extreme brain fog and fatigue that just hit me, why can't they just do what I ask? I think to myself, I could just let them go, it would be so much easier than fighting them on this, but no, they need to learn how to work and to be obedient, so I walk slowly to their room to help them to stay motivated and not get too overwhelmed. I sit down on the floor. This is the position I must choose when I set out to pick up any room unless it's a really good day where I can stand and bend to pick thigs up, but those days seem to be getting fewer and farther between. I scoot around on my bottom and gather common items into little piles and then with the boys help, we move the piles to their proper places. Soon we are done, but I'll have to vacuum later because I know i've overdone it and i'll feel even worst tomorrow if I don't rest now. The rest of the day is much of the same, my older boys will play at the neighbor's house or read or color or watch a movie while I rest. I'll manage to get them lunch somehow. My baby is two and a half and luckily still willing to take a nap with me so I read to him and sing to him and we both fall asleep. Waking up from my nap is the same as waking up in the morning, I cringe as I realize the pain is still there, always there to some degree. It could be worst though, it can always get worst. I have to get up. I promised my 7 yr old I would make him asian noodles with shrimp and peanut sauce for dinner. I love to cook, but the burning pain in my hands while I stir and chop are taking the fun out of it. I really should lay down before this pain in my ribs gets any worst and now the dizziness is kicking in. I finally finish, the look on my son's face as he eats his dinner is reward enough for the price I payed to make it. I got it done, but I can't eat it yet because I can't eat for another half an hour. Stupid meds! Will I have to take these my entire life? It's a powder that doesn't absorb into the liquid I take it with and it feels like i'm drinking sand. I gag and wretch as I choke it down. Matt will be home soon, I'll eat with him. I don't know how i'll get caught up on these dishes. If I just lay down for a while, then maybe I can work on them later tonight. I lay on the couch just as my phone beeps. I read a text from a dear friend, it reads, "How are you doing today?" I gaze out my picture window, I see beautiful mountains, a crystal blue lake, and golden wild grass. I look at my children laughing and wrestling in front of me on the floor, just then the front door opens and my best friend and eternal companion walks in with a smile on his face because he's so happy to see me. I text a reply back to my friend, "Doing well, how about you?" I realize that despite my daily agony and pain and the absence of my health, that phrase is wrong, I still have "everything". I am more than my illness, I am still me.
Every morning I open my eyes and I am hit again with the reality of this situation. I say "this" situation because it can't be "my" situation. This can't be happening to me, but it is, and it might not ever go away, so it's time for me to embrace it.
I lay in bed, waiting for the nausea to lesson, I assess the pain that moves through my legs and arms and abdomen, this will determine how hard it will be to get through the day. I was up most of the night because the pain was too much to fall asleep or stay asleep for long. I have to wake up now. I drag myself out of bed and begin to walk, the stiffness will subside within an hour, I hope. I make my way into the living room, the bottoms of my feet feel bruised with every step, hmmm, haven't felt that for a few days. As I turn the corner, three sets of beautiful, bright, blue eyes are staring at me. Three handsome, little men are looking at me, waiting for me, depending on me. I smile, I may not have my health, but I have them. As I look at them, it feels like I have "everything". I will myself to make pancakes and eggs for them today. I can't eat for another hour because of the meds I choke down 4 times a day, but I watch them eat and laugh and I feel satisfied that I was able to do something for them. I will have to do the dishes later because my energy is spent, I have to lay down on the couch for a while now. I look around at all the work I need to do, I don't understand why I can't just get up and do it, why can't I just do it now? The boys take their plates to the sink and sit by me, we read stories for a while, although it's hard for me to read because I'm out of breath after a couple of pages. I keep going though, my two oldest are old enough to read so they take over after a while. My two year old laughs and the sound warms my soul. I look over at the massive pile of clean clothes in the corner of the room. Maybe I can fold for a few minutes. I move to the floor and get to work. The pain and stiffness in my hands and arms is less than helpful, but i'm used to it, I need to get this done. I know my husband will have to put some of them away when he gets home, but i'll make a trip here and there throughout the day and hopefully get most of it done. I smile as I think of Matt. Once again, I feel like I have "everything". Half way through the clothes, it's time to lay down again, who knew that folding clothes could make your stomach hurt so bad. The older boys want to play with their friends now, but they need to do thier jobs. I tell them they can play after they clean their room, you'd think i'd asked them to clean the ENTIRE house with how they react. I try to be patient as I breath through the pain and extreme brain fog and fatigue that just hit me, why can't they just do what I ask? I think to myself, I could just let them go, it would be so much easier than fighting them on this, but no, they need to learn how to work and to be obedient, so I walk slowly to their room to help them to stay motivated and not get too overwhelmed. I sit down on the floor. This is the position I must choose when I set out to pick up any room unless it's a really good day where I can stand and bend to pick thigs up, but those days seem to be getting fewer and farther between. I scoot around on my bottom and gather common items into little piles and then with the boys help, we move the piles to their proper places. Soon we are done, but I'll have to vacuum later because I know i've overdone it and i'll feel even worst tomorrow if I don't rest now. The rest of the day is much of the same, my older boys will play at the neighbor's house or read or color or watch a movie while I rest. I'll manage to get them lunch somehow. My baby is two and a half and luckily still willing to take a nap with me so I read to him and sing to him and we both fall asleep. Waking up from my nap is the same as waking up in the morning, I cringe as I realize the pain is still there, always there to some degree. It could be worst though, it can always get worst. I have to get up. I promised my 7 yr old I would make him asian noodles with shrimp and peanut sauce for dinner. I love to cook, but the burning pain in my hands while I stir and chop are taking the fun out of it. I really should lay down before this pain in my ribs gets any worst and now the dizziness is kicking in. I finally finish, the look on my son's face as he eats his dinner is reward enough for the price I payed to make it. I got it done, but I can't eat it yet because I can't eat for another half an hour. Stupid meds! Will I have to take these my entire life? It's a powder that doesn't absorb into the liquid I take it with and it feels like i'm drinking sand. I gag and wretch as I choke it down. Matt will be home soon, I'll eat with him. I don't know how i'll get caught up on these dishes. If I just lay down for a while, then maybe I can work on them later tonight. I lay on the couch just as my phone beeps. I read a text from a dear friend, it reads, "How are you doing today?" I gaze out my picture window, I see beautiful mountains, a crystal blue lake, and golden wild grass. I look at my children laughing and wrestling in front of me on the floor, just then the front door opens and my best friend and eternal companion walks in with a smile on his face because he's so happy to see me. I text a reply back to my friend, "Doing well, how about you?" I realize that despite my daily agony and pain and the absence of my health, that phrase is wrong, I still have "everything". I am more than my illness, I am still me.
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