When I first got diagnosed with Lupus, I had a lot of people come up to me and tell me to "just keep fighting". They told me that I was strong, and that I could handle it. It hasn't been until recently that I have come to the decision of what it means to "fight" a chronic illness such as Lupus.
The first thing that pops into your mind when you say you are going to "fight" something is battling. You think of weaponry and battle. You think of a head-to-head combat, with one winner and the other invariably the loser.
When a person with a chronic illness takes this ideology, they will lose every time. My illness is chronic. It won't just suddenly go away. It may go into remission some day, but it will never completely leave me. It will always be my Constant Companion, and it will always be my obstacle to overcome.
I no longer think that "fighting" Lupus means that I need to continue my busy schedule during my bad days in order to beat it. Because I have found that when I do not pay attention to what my body is telling me, I end up in even worse shape the next day.
I have a good friend whose Mom died of breast cancer. I had the privilege of meeting her once. Strength shown through her eyes, and I see that same strength in her daughter's eyes today. If I were to take the battling perspective, filled with weaponry and heartache, I would have to say she lost the battle with cancer.
But the bottom line is she did not. She left a lasting legacy. She was so strong that her daughter feeds from that strength every day. She never let her cancer keep her from loving her daughter. She won because she never let her spirit and love of life die. It still lives.
I think we all can take a great lesson from her, and from anyone in this world who has a chronic illness and can wake up in the morning with a smile. Fighting Lupus does not involve me always having a good day. It does not involve me forcing myself to pretend to be healthy when I am not feeling that way.
What it does mean, is that I do not let Lupus kill my spirit and love of life. It means that I will wake up in the morning, with a smile on my face regardless of how swollen my body is that day. It means that I will no longer fret over the little things, like inevitable hair loss. It means that I will continue to live happily. It means that I will continue to help others to the best of my ability. It means that I will continue to be my bubbly, happy self.
That it what it means to fight.
Thursday, August 26, 2010
Tuesday, August 17, 2010
Saying Good-bye
I've been doing a lot of thinking lately about life, love, and happiness. Our life is filled with good-byes. Some are permanent, and some are only temporary. Saying good-bye is always hard. Saying good-bye is extremely difficult when it is to someone or something that you have relied on, been comforted from, and enjoyed company with. But sometimes it's necessary.
In order to survive, it is necessary. Sometimes to determine how much you rely on them or how much you find comfort from them, it is necessary to walk away for awhile. Sometimes it makes you stronger. Sometimes it makes you realize that you simply cannot be happy without that person/thing in your life. That they are the one who makes you smile in the morning.
When I first was told I was allergic to cheese I threw a fit. I was sooo mad at the world, and especially at the doctor who diagnosed me with the allergy. I literally stomped my way out of the doctor's office telling anyone who would listen to me the doctor was a quack and didn't know what he was talking about.
But saying good-bye to cheese has turned out to be one of the best things that could have happened to me. Cheese made me a weaker person. It made me live a life of misery. Sure, it was fun to eat. But the consequences of eating it simply were not worth it. The consequences out-weighed the benefits.
Saying good-bye to cheese made me stronger. It made me realize I can survive temptation. I can live without the "niceties" of life. That I don't need to have fancy things in my life or in my diet in order to live happily.
Another time I said good-bye was when I first went off to college. Saying good-bye to my parents, to the people who had been my foundational support for all of my life, was extremely difficult. Watching them drive away, leaving me surrounded by people I did not know, was hard. I cried for a good 30 minutes after they left. Then I realized that while I no longer had my parent's at my side, they were only one phone call away. Saying good-bye to them made me realize that they are my foundation. They are my parents. They aren't going to suddenly disappear into thin air, but they will always be there for me. No matter where I am physically, they are only one phone call away.
I learned that they love me unconditionally. That they love me for who I am, through every lazy day, through every fight, and through every trial. They let me make my own mistakes because they know that is how I learn best. They let me run the race, and then greet me with a hug at the finish line. They cheer me on. And it took me saying good-bye to realize how much they mean to me.
When I got so sick, I had to say good-bye to running. I didn't realize how balanced I feel when I am able to run until I said adios. When I run, I am myself. I don't feel like I have to please others with my thoughts and actions, but I let my mind wander to wherever it pleases. I work through my problems and through my thoughts. I think of solutions to seemingly impossible obstacles while I run.
I know that running is good for me physically, but it's also good for me emotionally. It makes me balanced. It makes me stronger. It makes me face reality, and helps me focus on my problems to find the best solution possible.
I've been doing a lot of running lately, mainly because I've been doing a lot of thinking. I've been thinking about how our world is filled with good-byes; whether it be to speeding, junk food, to your child/parent when you go off to college, or to....
In order to survive, it is necessary. Sometimes to determine how much you rely on them or how much you find comfort from them, it is necessary to walk away for awhile. Sometimes it makes you stronger. Sometimes it makes you realize that you simply cannot be happy without that person/thing in your life. That they are the one who makes you smile in the morning.
When I first was told I was allergic to cheese I threw a fit. I was sooo mad at the world, and especially at the doctor who diagnosed me with the allergy. I literally stomped my way out of the doctor's office telling anyone who would listen to me the doctor was a quack and didn't know what he was talking about.
But saying good-bye to cheese has turned out to be one of the best things that could have happened to me. Cheese made me a weaker person. It made me live a life of misery. Sure, it was fun to eat. But the consequences of eating it simply were not worth it. The consequences out-weighed the benefits.
Saying good-bye to cheese made me stronger. It made me realize I can survive temptation. I can live without the "niceties" of life. That I don't need to have fancy things in my life or in my diet in order to live happily.
Another time I said good-bye was when I first went off to college. Saying good-bye to my parents, to the people who had been my foundational support for all of my life, was extremely difficult. Watching them drive away, leaving me surrounded by people I did not know, was hard. I cried for a good 30 minutes after they left. Then I realized that while I no longer had my parent's at my side, they were only one phone call away. Saying good-bye to them made me realize that they are my foundation. They are my parents. They aren't going to suddenly disappear into thin air, but they will always be there for me. No matter where I am physically, they are only one phone call away.
I learned that they love me unconditionally. That they love me for who I am, through every lazy day, through every fight, and through every trial. They let me make my own mistakes because they know that is how I learn best. They let me run the race, and then greet me with a hug at the finish line. They cheer me on. And it took me saying good-bye to realize how much they mean to me.
When I got so sick, I had to say good-bye to running. I didn't realize how balanced I feel when I am able to run until I said adios. When I run, I am myself. I don't feel like I have to please others with my thoughts and actions, but I let my mind wander to wherever it pleases. I work through my problems and through my thoughts. I think of solutions to seemingly impossible obstacles while I run.
I know that running is good for me physically, but it's also good for me emotionally. It makes me balanced. It makes me stronger. It makes me face reality, and helps me focus on my problems to find the best solution possible.
I've been doing a lot of running lately, mainly because I've been doing a lot of thinking. I've been thinking about how our world is filled with good-byes; whether it be to speeding, junk food, to your child/parent when you go off to college, or to....
Friday, August 13, 2010
The Four Year Old who Ran Forty Miles
I was browsing the internet this morning and came across this article. It broke my heart. :(
Budhia Singh
The Four Year Old who Ran Forty Miles
Budhia Singh
The 4 Year Old who runs half marathons
Budhia Singh lives in Orissa, India where a third of the population live in slums and the state has the highest child mortality rate in India.
Since the age of three Budhia has been running 20 miles a day and is currently preparing to run a half marathon, his fifth in seven weeks.
Is Budhia's story an account of exceptional child talent or a darker tale of child exploitation.
His coach Biranchi Das, a local judo instructor, aims to train Budhia to become India's greatest marathon runner who will go on to win Olympic glory. His training regime begins at 4 o'clock in the morning in a typical blazing, misty dawn in Orissa.
His mother who worked as a maid for £3 a month has four children, of whom Budhia is the youngest. She was unable to feed and clothe them so took the heartbreaking decision to sell Budhia to a travelling peddler for £10. The peddler was a drunk who would beat the boy regularly. When Biranchi found him he was naked, wounded, and seriously underfed.
Biranchi Das
Budhia's talent for running was only discovered when Biranchi heard the young boy swearing at another of the Judo students. He ordered Budhia to run around the running track until he returned. Biranchi went out and forgot about the boy until his return six hours later. Incredibly, Budhia was still running!
Biranchi has no experience with athletics or long-distance running, but he has devised his own training programme which includes his belief that Budhia should not drink while running. He allows him energy drinks before and after a race, but never during one.
Budhia's coach wants him to take part in the Delhi half-marathon. No-one knows how he will cope with his first competitive race, but for Biranchi, it's an important step in his plan to turn Budhia into an elite, Olympic athlete.
On the day of the race, there is a problem. Budhia's fame has arrived before him, and with it controversy. He has been told that, due to International Rules, he can't run in the main race. He is so much the centre of attention that the race organisers agree to allow him to compete in the final event, a 6km race for all ages. At the after-race party, in the evening, he meets former Olympic champion Daley Thompson.
Tim Hutchins, the coordinator of the London Marathon, is outspoken: "Children shouldn't be training hard, for any sport, until they are fifteen or sixteen years old. For a child of three to be training hard is verging on the criminal".
Back in Orissa, the child welfare minister is taking a keen interest in the case. She thinks Biranchi is using Budhia's running talent and the media coverage to promote his own interests and believes the child's health will suffer. Biranchi disagrees and argues that he is trying to improve Budhia's life. He is being properly fed, he is clothed, and he is receiving regular schooling.
Biranchi's plans are becoming ever more ambitious. He will have Budhia run from Puri to Bhubaneswar, then he'll run the marathon in Nayagarh, and from there they'll go to Milan. But, before this he will set Budhia an even greater challenge, one that will put him into the record books. He will run 70km, 42 miles, non-stop. With no water, this is a run that could put Budhia's life at risk.
If he succeeds, he will become the youngest endurance runner in the world, and there will be official observers ready to record his achievements.
On the day of the race, temperatures are expected to reach 90°F. Not even the elite Kenyan athletes run these distances in such temperatures.
Budhia has a police escort and medical backup. Six hours into the run and Budhia has covered 58km. Biranchi uses a water-bottle, like a carrot on a stick, to entice him to keep running. After 67km, Budhia stops. Exhausted and disoriented, the army doctor who has been overseeing the race, steps in. After a protracted delay, Budhia is taken to the central police stadium to recover. The army doctor is convinced Budhia is ill, suffering from convulsions and possible brain damage.
One of Many Lonely Sojourns
Despite stopping 3km short of the target, he has still set a new record and will go into the Limca Book of Records as the youngest ever endurance runner.
Biranchi insists that Budhia runs of his own free will, he likes to run, and is not coerced in any way. The authorities are not convinced. Three days later, on the basis of the Limca run, a police warrant is issued for child exploitation. Biranchi is arrested. He is ordered to bring Budhia to Capital Hospital where the child committee want him examined by sports scientists.
The medical team include a cardiologist, a paediatrician, a psychologist, and a psychiatrist. They found his pulse-rate high, his blood-pressure high, he was under-nourished, anaemic, and suffering a vitamin deficiency.
The child welfare minister has now banned Budhia from running any more marathons in the state.
source: http://www.mymultiplesclerosis.co.uk/misc/budhiasingh.html
But I haven't blogged in a while. I find on my good days, I just don't want to waste time sitting at a computer. So instead I go outside and enjoy life. Therefore, if I don't blog...that's usually a good sign.
Anyways...I'm off to go live life today. AKA go to work a 9 hour shift. Have a fabulous day my friends!
Until next time....
Budhia Singh
The Four Year Old who Ran Forty Miles
Budhia Singh
The 4 Year Old who runs half marathons
Budhia Singh lives in Orissa, India where a third of the population live in slums and the state has the highest child mortality rate in India.
Since the age of three Budhia has been running 20 miles a day and is currently preparing to run a half marathon, his fifth in seven weeks.
Is Budhia's story an account of exceptional child talent or a darker tale of child exploitation.
His coach Biranchi Das, a local judo instructor, aims to train Budhia to become India's greatest marathon runner who will go on to win Olympic glory. His training regime begins at 4 o'clock in the morning in a typical blazing, misty dawn in Orissa.
His mother who worked as a maid for £3 a month has four children, of whom Budhia is the youngest. She was unable to feed and clothe them so took the heartbreaking decision to sell Budhia to a travelling peddler for £10. The peddler was a drunk who would beat the boy regularly. When Biranchi found him he was naked, wounded, and seriously underfed.
Biranchi Das
Budhia's talent for running was only discovered when Biranchi heard the young boy swearing at another of the Judo students. He ordered Budhia to run around the running track until he returned. Biranchi went out and forgot about the boy until his return six hours later. Incredibly, Budhia was still running!
Biranchi has no experience with athletics or long-distance running, but he has devised his own training programme which includes his belief that Budhia should not drink while running. He allows him energy drinks before and after a race, but never during one.
Budhia's coach wants him to take part in the Delhi half-marathon. No-one knows how he will cope with his first competitive race, but for Biranchi, it's an important step in his plan to turn Budhia into an elite, Olympic athlete.
On the day of the race, there is a problem. Budhia's fame has arrived before him, and with it controversy. He has been told that, due to International Rules, he can't run in the main race. He is so much the centre of attention that the race organisers agree to allow him to compete in the final event, a 6km race for all ages. At the after-race party, in the evening, he meets former Olympic champion Daley Thompson.
Tim Hutchins, the coordinator of the London Marathon, is outspoken: "Children shouldn't be training hard, for any sport, until they are fifteen or sixteen years old. For a child of three to be training hard is verging on the criminal".
Back in Orissa, the child welfare minister is taking a keen interest in the case. She thinks Biranchi is using Budhia's running talent and the media coverage to promote his own interests and believes the child's health will suffer. Biranchi disagrees and argues that he is trying to improve Budhia's life. He is being properly fed, he is clothed, and he is receiving regular schooling.
Biranchi's plans are becoming ever more ambitious. He will have Budhia run from Puri to Bhubaneswar, then he'll run the marathon in Nayagarh, and from there they'll go to Milan. But, before this he will set Budhia an even greater challenge, one that will put him into the record books. He will run 70km, 42 miles, non-stop. With no water, this is a run that could put Budhia's life at risk.
If he succeeds, he will become the youngest endurance runner in the world, and there will be official observers ready to record his achievements.
On the day of the race, temperatures are expected to reach 90°F. Not even the elite Kenyan athletes run these distances in such temperatures.
Budhia has a police escort and medical backup. Six hours into the run and Budhia has covered 58km. Biranchi uses a water-bottle, like a carrot on a stick, to entice him to keep running. After 67km, Budhia stops. Exhausted and disoriented, the army doctor who has been overseeing the race, steps in. After a protracted delay, Budhia is taken to the central police stadium to recover. The army doctor is convinced Budhia is ill, suffering from convulsions and possible brain damage.
One of Many Lonely Sojourns
Despite stopping 3km short of the target, he has still set a new record and will go into the Limca Book of Records as the youngest ever endurance runner.
Biranchi insists that Budhia runs of his own free will, he likes to run, and is not coerced in any way. The authorities are not convinced. Three days later, on the basis of the Limca run, a police warrant is issued for child exploitation. Biranchi is arrested. He is ordered to bring Budhia to Capital Hospital where the child committee want him examined by sports scientists.
The medical team include a cardiologist, a paediatrician, a psychologist, and a psychiatrist. They found his pulse-rate high, his blood-pressure high, he was under-nourished, anaemic, and suffering a vitamin deficiency.
The child welfare minister has now banned Budhia from running any more marathons in the state.
source: http://www.mymultiplesclerosis.co.uk/misc/budhiasingh.html
But I haven't blogged in a while. I find on my good days, I just don't want to waste time sitting at a computer. So instead I go outside and enjoy life. Therefore, if I don't blog...that's usually a good sign.
Anyways...I'm off to go live life today. AKA go to work a 9 hour shift. Have a fabulous day my friends!
Until next time....
Tuesday, August 3, 2010
Today = Icky Day
I can always tell when the day is going to be a bad/good Lupus day within seconds of when I wake up. I'm a big stretcher. That is the first thing I do every morning. I spread my arms and stretch out as far as I physically can expand my body. On my bad days, my whole lower half of my body does not stretch. It's because it's so swollen that it just doesn't move.
Anyways...I woke up this morning, and I went to stretch. And.....nada. Not a thing moved.
I find on these days, that it's best to just not think. Because when you start thinking, the negative thoughts start to creep in. On these days, you just fight. You dig down deep, you find that inner strength buried deep within you, and you just fight.
Fighting is easier when you don't ponder the "what if's", or the "why me" questions. It's best if you just take things one at a time.
First on my agenda? Food. Next? Painting. I enjoy it. And what better thing to accomplish on a day when I have no energy, and no mobility? I've got a few unfinished projects calling my name.
Until later,
Your Ancient-Bodied-slightly-hungry Friend. :P
Anyways...I woke up this morning, and I went to stretch. And.....nada. Not a thing moved.
I find on these days, that it's best to just not think. Because when you start thinking, the negative thoughts start to creep in. On these days, you just fight. You dig down deep, you find that inner strength buried deep within you, and you just fight.
Fighting is easier when you don't ponder the "what if's", or the "why me" questions. It's best if you just take things one at a time.
First on my agenda? Food. Next? Painting. I enjoy it. And what better thing to accomplish on a day when I have no energy, and no mobility? I've got a few unfinished projects calling my name.
Until later,
Your Ancient-Bodied-slightly-hungry Friend. :P
Monday, August 2, 2010
Life Goes On
My Mom taught me at an early age to use a calender to plan out my life. She taught me predictability. I am extremely spontaneous, but I make sure my spontaneity fits in with my calender. I like that predictability. I like knowing what my plans are for tomorrow, or even for three months from now. I like knowing what to expect from the next day. I like knowing where I have to be, and when I have to be there.
But my body has deceived me. My immune system has turned on it's host. It has taken away that predictability that I hold so dearly, and thrown it out the window. I no longer know what to expect tomorrow. I no longer have that knowledge that I will wake up in the morning with the same energy level I had the day before. I no longer have that feeling of security in my body. I hate that with a passion that mere words cannot describe. I hate knowing that my body is fighting against itself. My body has become my worst enemy.
You never know quite how lucky you are, until you lose something that you hold so dearly. The hair you have on your head, don't take for granted. One day you may end up like me, losing a handful every morning on your pillow and even more in the shower or on your brush.
The energy you have to make it through the whole day? Don't take that for granted. Don't waste it sitting on the couch. Go out and live life to the fullest. Play with your children while you still have the energy and wellness to do so. Spend time with your significant other.
The legs you take for granted? You know...the ones that help get you up out of bed every morning? Use them for me today, please. Go out for a run with the knowledge that it won't land you in bed for the rest of the week. Go out and enjoy the sunshine. Go for a walk, go swimming, just go DO something. Do it for me.
Throughout these past few months, I have learned a lot about both myself and my friends. I now know, without a shadow of a doubt, that I have one outstanding support system. I have had friends: drop off food to my front door, drive with me to doctor's appointments, held me while I cried, drive 4 hours to come spend time with me and help me through this, held my hand and walk beside me, help pay for rent for the month I was too sick to work, written me encouragement cards, met me for coffee to just listen to me vent, and sooo much more. I've also learned that life does go on.
Life sucks sometimes. I'll be the first one to say it. But it still goes on. Sometimes you just have to hang on for the ride. There's been some days when the pain (both emotional and physical) become too much that all I can do is curl up in a ball and scream out to God asking "Why?". That's the only word I can form in my tormented mind is "why".
Why is this happening to me? Why are you allowing this to happen? Why aren't you saving me from this pain? Why?! Why do bad things happen? Why aren't you doing something to stop this? Why? Why am I going through so much pain? Why aren't you showing your plan for me? WHY?!
Sometimes the pain gets to be so much that I don't think I can go on any more. It just becomes so unbearable. But then I remember you. I remember your face, and feed off your inner strength. I remember how you're praying for me. How you are fighting for me. You give me hope on the bad days, and you deserve to be thanked. You remind me to just hang on, because a good day is going to come soon. And we can go hang out doing our "thing". Thank you for being there for me.
I know you don't realize it, but you reminded me today that life does go on. Thank you.
But my body has deceived me. My immune system has turned on it's host. It has taken away that predictability that I hold so dearly, and thrown it out the window. I no longer know what to expect tomorrow. I no longer have that knowledge that I will wake up in the morning with the same energy level I had the day before. I no longer have that feeling of security in my body. I hate that with a passion that mere words cannot describe. I hate knowing that my body is fighting against itself. My body has become my worst enemy.
You never know quite how lucky you are, until you lose something that you hold so dearly. The hair you have on your head, don't take for granted. One day you may end up like me, losing a handful every morning on your pillow and even more in the shower or on your brush.
The energy you have to make it through the whole day? Don't take that for granted. Don't waste it sitting on the couch. Go out and live life to the fullest. Play with your children while you still have the energy and wellness to do so. Spend time with your significant other.
The legs you take for granted? You know...the ones that help get you up out of bed every morning? Use them for me today, please. Go out for a run with the knowledge that it won't land you in bed for the rest of the week. Go out and enjoy the sunshine. Go for a walk, go swimming, just go DO something. Do it for me.
Throughout these past few months, I have learned a lot about both myself and my friends. I now know, without a shadow of a doubt, that I have one outstanding support system. I have had friends: drop off food to my front door, drive with me to doctor's appointments, held me while I cried, drive 4 hours to come spend time with me and help me through this, held my hand and walk beside me, help pay for rent for the month I was too sick to work, written me encouragement cards, met me for coffee to just listen to me vent, and sooo much more. I've also learned that life does go on.
Life sucks sometimes. I'll be the first one to say it. But it still goes on. Sometimes you just have to hang on for the ride. There's been some days when the pain (both emotional and physical) become too much that all I can do is curl up in a ball and scream out to God asking "Why?". That's the only word I can form in my tormented mind is "why".
Why is this happening to me? Why are you allowing this to happen? Why aren't you saving me from this pain? Why?! Why do bad things happen? Why aren't you doing something to stop this? Why? Why am I going through so much pain? Why aren't you showing your plan for me? WHY?!
Sometimes the pain gets to be so much that I don't think I can go on any more. It just becomes so unbearable. But then I remember you. I remember your face, and feed off your inner strength. I remember how you're praying for me. How you are fighting for me. You give me hope on the bad days, and you deserve to be thanked. You remind me to just hang on, because a good day is going to come soon. And we can go hang out doing our "thing". Thank you for being there for me.
I know you don't realize it, but you reminded me today that life does go on. Thank you.
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