Considering I'm blogging, you can almost guess with 100% accuracy that today is a bad Lupus day. Actually, the last couple days have been fairly bad. It just gets so frustrating sometimes. I'm such a proactive person, and I feel like there is nothing I can do to make myself better.
Sometimes, I almost wish I had cancer instead of Lupus. At least with cancer you either get better or you die. I know that sounds awful, but it's how I feel at times. And with cancer you actually look like you are sick. People don't expect you to be at your ultimate best all the time. They don't look at your weird when you wait to use the handicapped restroom, because you know you wouldn't be able to stand up on your own without the bars to assist you.
I am not wishing for death, please do not misunderstand me. But I am wishing for a cure. I am wishing that one day, when a 21-year old female gets diagnosed with Lupus, the next sentence her doctor will tell her is "No worries, there is a cure."
I did my laundry today. That is all that I accomplished. I woke up with a headache, with a hand-full of hair on my pillow, and extremely nauseous. My body is achy and swollen, my knees hurt. And as simple as laundry sounds, it was one extremely hard chore for me to accomplish today.
I must say though, I am very proud of my intellectual progress. I now keep microwavable meals on hand, and have upgraded from my bunk bed to an absolutely ahmazingly comfortable bed.
It's in the days like today that I struggle the most with maintaining my sunny personality. It is so incredibly easy to just lie around and complain about the unfairness of my situation.
On my good days, I often ponder how I can turn my mind from the negatives of my situation on a bad day to something more positive. I've tried painting, blogging, reading, etc. But I have yet to find an actual solution. If you have any ideas, by all means please let me know. My goal is to maintain my sunny outlook in both the good times AND the bad times.
I have found that whenever I run across some old person who is still well....happy about their life, it never fails to make me smile. Because those people are unfortunately few and far between. Far too often, one only runs across grumpy old men, or complaining old ladies. Those few old, happy people give me reason to believe that not every person is doomed for an unhappy ending to their life.
Anyways, I'm gonna go take a nap.
Wednesday, September 15, 2010
Thursday, August 26, 2010
Fight the Great Fight
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.
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.
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.
Tuesday, July 20, 2010
My Cravings
It never ceases to amaze me when you go on a "diet", as to what I crave. When I first got diagnosed with a cheese allergy, the only thing I craved was mac n' cheese. Ah, how much I miss it! It's the one thing in the world that I still struggle with watching people eat to this day. I don't mind watching people eat pizza believe it or not. I definitely would like to be able to eat that cheesey goodness again, but I can handle watching people eat it. It's mac n' cheese that I literally can't watch. The smell of it, the feel of it....Hmmmm.
But since my GF diet started the things I have been craving are as follows:
--Oreos
--The Angel Hair spaghetti from Walmart...the one that costs a whopping 94 cents.
--Tuna Helper, brocilli kind.
--Hot dog WITH a bun :)
And....that's actuallly all of it. There's some things I'd like to be able to eat, but those are the three biggies. The ones that I went to bed dreaming of one day being able to eat.
Well, at my second opinion appointment my doctor raised a very valid point. She said that in order to be 100% sure it's the GF diet that is helping relieve my symptoms, and not some weird coincidence, I need to go onto a regular diet for a month...and then go on the GF diet again for a month. And repeat this process twice, all the while taking a very detailed journal of my symptoms.
So here I am. Back on a regular diet. And what have I eaten today? Had tuna helper for lunch today, and am now devouring some very yummy spaghetti. :-) I had a few oreos after breakfast. I also have plans to go to a pot luck with some friends....in which there will be yummy hotdogs. With buns. :-)
But since my GF diet started the things I have been craving are as follows:
--Oreos
--The Angel Hair spaghetti from Walmart...the one that costs a whopping 94 cents.
--Tuna Helper, brocilli kind.
--Hot dog WITH a bun :)
And....that's actuallly all of it. There's some things I'd like to be able to eat, but those are the three biggies. The ones that I went to bed dreaming of one day being able to eat.
Well, at my second opinion appointment my doctor raised a very valid point. She said that in order to be 100% sure it's the GF diet that is helping relieve my symptoms, and not some weird coincidence, I need to go onto a regular diet for a month...and then go on the GF diet again for a month. And repeat this process twice, all the while taking a very detailed journal of my symptoms.
So here I am. Back on a regular diet. And what have I eaten today? Had tuna helper for lunch today, and am now devouring some very yummy spaghetti. :-) I had a few oreos after breakfast. I also have plans to go to a pot luck with some friends....in which there will be yummy hotdogs. With buns. :-)
Thursday, July 15, 2010
My Lie. a.k.a...My Life.
To the people who care about me most, and whom I consider to be my friends:
I haven't been completely honest with you when you ask me how I'm feeling. I lack the courage to tell you the truth in person, but I still want to share with you. So I wrote this letter. Please read it.
I'm angry. I hate what this is doing to me. I hate that I wake up with a handful of hair on my pillow every morning. Yeah, I lied when I said it was just every now and then. Some days are better than others, but it still happens every day. I look in the mirror every morning, not to check and see whether or not I have a zit like I used to, but to make sure the thinning of my hair isn't noticeable. I spend 20 more minutes a day now fixing my hair than what I used to do. I want to make sure that you can't tell my hair is falling out one beautiful curly strand at a time.
I hate that I can't tie my shoes most days because my feet start to swell and it hurts. Yeah, I said that the GF diet is helping...and it is. But not as much as I've led you to believe.
I hate that I honestly don't know who to call right now after midnight to come give me a hug. I know there's at least six people who would drop everything and come over here ASAP if I called and asked, but I feel silly for crying over this. There's so many other people hurting in the world, who am I to make you go out of your way to come comfort me?
I'm scared about my second opinion appointment. I'm afraid she'll tell me it's something worse than Lupus. That I have cancer, or am going to die. I want to live a normal life. God, just let me live a normal life.
I feel alone in my suffering. Immediately after my diagnosis, I was flooded with "praying for you" cards, and "hope you feel better soon" stuff, I even had one person pay my rent for the month I was too sick to work. I know I am loved. But I love my friends as well. And I don't want them to have to suffer along with me.
So when you ask me "how are you doing today?" I lie. I lie to you not because I want to, but because I feel like I have to. I feel like if I were to tell you how I'm feeling, you wouldn't be able to handle it. I feel like if I told you the truth, all I'd get from you is a sympathy look. I hate that look with a passion. I don't want your sympathy. I want your friendship. I want you to call me, and to hang out with me. I want you to make me forget about my insecurities for just one night. I want to have fun, and to pretend to be a normal 22 year old female.
But I'm not normal. I'm sick.
There's five stages of grief. Denial, Anger, Bargaining, Depression, and Acceptance.
My denial happened when I first started having problems. It ended the day I woke up with legs too swollen and stiff to get out of my bed. I was stuck there until 1 in the afternoon before I figured out a way to get off of my top bunk. I used a sheet and tied it around my waist to levy myself down.
Right after I got diagnosed, my parent's met me in the parking lot. They gave me a hug. And then took me out to eat. My anger started when I was reading to them out-loud the "pamphlets" my rheumatologist gave me. My anger continued to swell to the point that I could barely stand it anymore. I avoided church, I avoided my friends, and I especially avoided God.
There was one point when I pulled into chick-fil-a's parking lot because I was crying too hard to see the road. I sat in my car and screamed at God telling Him how unfair he was to put me through this. How I didn't deserve this, how I'm a decent human being.
I'd be lying to you if I told you there are no longer moments when I get angry. If I stop and let myself dwell on it long enough, then I can feel my anger swell. When I hear someone tell me "Amanda, I'm so sorry this is happening to you. You're such a sweet girl" I usually get angry.
But today, today someone told me that and I did not feel anger. All I felt was sadness. I am mourning the loss of what I could have been. What I could have accomplished if I no longer had the label "Lupus patient" attached to me. The places I could have gone if I had no food allergies. The person I could have become. The people I could have reached. The things I could have done if I still had my old energy level.
I am not the same Amanda I was 7 months ago. I'm not in denial over whether or not my sore knee is something to be worried about. I am no longer ignoring the excess amount of hair that comes out when I take a shower. I am no longer attributing my fatigue to working too much. I no longer think that my swollen legs are because of bad shoes or being on my feet all day.
You want to know a secret? Earlier this week I got curious as to how much hair I was losing. So after I took a shower I scooped up all of my hair, and instead of throwing it away I wrapped a tissue around it and put it in my room. Then later when I started to brush my hair, I took extra care to make sure I got every strand. And then I put it into the bag. I carried that bag around with me all day long. Tried to make sure I caught every spare strand that fell off of my scalp. By the end of the day, I had to use a second bag. Both bags are now in my room.
I started counting the strands of my gorgeous hair. I've never felt so ugly and so completely hopeless before.
I'm sick. I have Lupus.
And I am in no way, shape, or form okay with this. I am mourning the loss of Aunt Tonabell's home-cooked bread. I miss waking up in the mornings without stiff joints. I miss the days I could vigorously brush my hair without having to clean it out every 6 strokes because my lost hair is covering the bristles. I miss those days.
I miss going to bed with the only major thought on my mind whether the next day would bring good tennis-playing weather. I miss being able to do all of my grocery shopping in one store. I miss the simplicity my life used to have.
I miss feeling accepted by the people around me. I don't like being gossiped about. I don't like the questions of how I am feeling. I don't like it because it means I'm no longer the same person I was before this diagnosis. I'm different. And I don't feel like it's a good different.
My life has become so much more complicated in the past few months. In fact, it's so complicated I don't even know how to describe it. The simplest way would probably be to say that I don't trust you anymore. Not the same way I used to.
In order to tell you everything on my mind, I'd have to share more of myself than what you are ready to accept. What I'm going through is a process, and sometimes I don't think you are walking through this process with me. So therefore, I don't tell you. Not because I don't think you care, but rather because I don't think you are ready to hear yet.
The only problem with this is that I am hurting. I want to tell someone everything on my mind. I share some with everyone whom I trust, but I only share bits and pieces. I pick and choose what to tell you.
I beg of you, walk through this process with me. I want a crying buddy. But I love you too much to hurt you. I know you are ready to listen, but I don't think you are ready to hear. So until you are ready to hear....to truly hear what I'm feeling, I will only tell you bits and pieces. I will continue living my lie. I just pray that you love me enough to one day gather enough courage to be my crying buddy.
I haven't been completely honest with you when you ask me how I'm feeling. I lack the courage to tell you the truth in person, but I still want to share with you. So I wrote this letter. Please read it.
I'm angry. I hate what this is doing to me. I hate that I wake up with a handful of hair on my pillow every morning. Yeah, I lied when I said it was just every now and then. Some days are better than others, but it still happens every day. I look in the mirror every morning, not to check and see whether or not I have a zit like I used to, but to make sure the thinning of my hair isn't noticeable. I spend 20 more minutes a day now fixing my hair than what I used to do. I want to make sure that you can't tell my hair is falling out one beautiful curly strand at a time.
I hate that I can't tie my shoes most days because my feet start to swell and it hurts. Yeah, I said that the GF diet is helping...and it is. But not as much as I've led you to believe.
I hate that I honestly don't know who to call right now after midnight to come give me a hug. I know there's at least six people who would drop everything and come over here ASAP if I called and asked, but I feel silly for crying over this. There's so many other people hurting in the world, who am I to make you go out of your way to come comfort me?
I'm scared about my second opinion appointment. I'm afraid she'll tell me it's something worse than Lupus. That I have cancer, or am going to die. I want to live a normal life. God, just let me live a normal life.
I feel alone in my suffering. Immediately after my diagnosis, I was flooded with "praying for you" cards, and "hope you feel better soon" stuff, I even had one person pay my rent for the month I was too sick to work. I know I am loved. But I love my friends as well. And I don't want them to have to suffer along with me.
So when you ask me "how are you doing today?" I lie. I lie to you not because I want to, but because I feel like I have to. I feel like if I were to tell you how I'm feeling, you wouldn't be able to handle it. I feel like if I told you the truth, all I'd get from you is a sympathy look. I hate that look with a passion. I don't want your sympathy. I want your friendship. I want you to call me, and to hang out with me. I want you to make me forget about my insecurities for just one night. I want to have fun, and to pretend to be a normal 22 year old female.
But I'm not normal. I'm sick.
There's five stages of grief. Denial, Anger, Bargaining, Depression, and Acceptance.
My denial happened when I first started having problems. It ended the day I woke up with legs too swollen and stiff to get out of my bed. I was stuck there until 1 in the afternoon before I figured out a way to get off of my top bunk. I used a sheet and tied it around my waist to levy myself down.
Right after I got diagnosed, my parent's met me in the parking lot. They gave me a hug. And then took me out to eat. My anger started when I was reading to them out-loud the "pamphlets" my rheumatologist gave me. My anger continued to swell to the point that I could barely stand it anymore. I avoided church, I avoided my friends, and I especially avoided God.
There was one point when I pulled into chick-fil-a's parking lot because I was crying too hard to see the road. I sat in my car and screamed at God telling Him how unfair he was to put me through this. How I didn't deserve this, how I'm a decent human being.
I'd be lying to you if I told you there are no longer moments when I get angry. If I stop and let myself dwell on it long enough, then I can feel my anger swell. When I hear someone tell me "Amanda, I'm so sorry this is happening to you. You're such a sweet girl" I usually get angry.
But today, today someone told me that and I did not feel anger. All I felt was sadness. I am mourning the loss of what I could have been. What I could have accomplished if I no longer had the label "Lupus patient" attached to me. The places I could have gone if I had no food allergies. The person I could have become. The people I could have reached. The things I could have done if I still had my old energy level.
I am not the same Amanda I was 7 months ago. I'm not in denial over whether or not my sore knee is something to be worried about. I am no longer ignoring the excess amount of hair that comes out when I take a shower. I am no longer attributing my fatigue to working too much. I no longer think that my swollen legs are because of bad shoes or being on my feet all day.
You want to know a secret? Earlier this week I got curious as to how much hair I was losing. So after I took a shower I scooped up all of my hair, and instead of throwing it away I wrapped a tissue around it and put it in my room. Then later when I started to brush my hair, I took extra care to make sure I got every strand. And then I put it into the bag. I carried that bag around with me all day long. Tried to make sure I caught every spare strand that fell off of my scalp. By the end of the day, I had to use a second bag. Both bags are now in my room.
I started counting the strands of my gorgeous hair. I've never felt so ugly and so completely hopeless before.
I'm sick. I have Lupus.
And I am in no way, shape, or form okay with this. I am mourning the loss of Aunt Tonabell's home-cooked bread. I miss waking up in the mornings without stiff joints. I miss the days I could vigorously brush my hair without having to clean it out every 6 strokes because my lost hair is covering the bristles. I miss those days.
I miss going to bed with the only major thought on my mind whether the next day would bring good tennis-playing weather. I miss being able to do all of my grocery shopping in one store. I miss the simplicity my life used to have.
I miss feeling accepted by the people around me. I don't like being gossiped about. I don't like the questions of how I am feeling. I don't like it because it means I'm no longer the same person I was before this diagnosis. I'm different. And I don't feel like it's a good different.
My life has become so much more complicated in the past few months. In fact, it's so complicated I don't even know how to describe it. The simplest way would probably be to say that I don't trust you anymore. Not the same way I used to.
In order to tell you everything on my mind, I'd have to share more of myself than what you are ready to accept. What I'm going through is a process, and sometimes I don't think you are walking through this process with me. So therefore, I don't tell you. Not because I don't think you care, but rather because I don't think you are ready to hear yet.
The only problem with this is that I am hurting. I want to tell someone everything on my mind. I share some with everyone whom I trust, but I only share bits and pieces. I pick and choose what to tell you.
I beg of you, walk through this process with me. I want a crying buddy. But I love you too much to hurt you. I know you are ready to listen, but I don't think you are ready to hear. So until you are ready to hear....to truly hear what I'm feeling, I will only tell you bits and pieces. I will continue living my lie. I just pray that you love me enough to one day gather enough courage to be my crying buddy.
Tuesday, July 13, 2010
Monday, July 12, 2010
Meditation
So here I sit. It's 11:20 at night, and I have so many papers, notebooks, pencils, highlighters, and clothing around me I can't move. And I'm not entirely sure if I want to move at the moment to be completely honest. I've spent the last 4 hours (with the exception of a quick walk around the neighborhood) organizing a notebook filled with: my symptoms; research on GF diets; research on: Lupus, Sjodren's Syndrome, Raynaud's Phenomenon, and Celiac's Disease; and e-mails to one of my nurse friends discussing my medical condition and doctor's appointments. I'm pooped to say the least.
Some days, like today, it feels like the pain I felt months ago was all part of a bad dream. It's only when I close my eyes and think back to those painful days that I remember. Days like today give me hope for the future. They make me wish for a cure for Lupus, they make me plan 5k races and walk-a-thons for Lupus awareness. They are good for me, good for my outlook on life. But they also can be detrimental. They make me want to make plans for the fall that will more than likely throw me into a flare-up in speedy time. They make me want to take that photography job, and work 12 hours days/7 days a week, simply because that's been my dream since I was a kid. They make me want to ditch school and travel overseas to study Spanish somewhere, completely immersing myself in the culture.
Days like today are both good and bad. They are the days that make me think I was crazy 5 months ago for thinking I was in pain. They make me almost forget what it felt like when I was at my worst.
But I still remember. I remember the day I had to call a friend to come drag my sorry self out of bed, because my legs were too swollen and stiff. I remember the day I got diagnosed with Lupus. I remember calling my Mom immediately after walking out of the doctor's office doors, and I remember pulling off into the chick-fil-a parking lot because my tears obstructed my vision. I remember the day I felt like a complete idiot because I left all of my groceries at Wal-mart, 3 times. I remember.
I remember the day I failed a Spanish test, because even though I had studied my heart out....I couldn't remember the words. I remember feeling like a failure.
I remember the day I turned in my running shoes for clogs because I couldn't get my swollen feet inside the stupid shoes. I remember.
I remember going to that support group and being told to "off myself" because life at my age with Lupus wasn't worth living. I remember the anger I felt after that. I remember how that one lady somehow managed to catch hold of my stubborn self, my inner strength, and pull it straight to the surface.
I remember how after that day I started fighting. I started researching. I remember.
And now here I sit, amongst all of the research I have gathered throughout the past 6 months. And I feel overwhelmed. It doesn't matter that I've read all of stuff stuff 3 times, and some I have practically memorized. It's just soooo much stuff. My GF book is off to my far left, buried under my newest binder designated to take to my 2nd opinion appointment....my pen somehow rolled under my tush. Hopefully it won't spill ink anywhere, especially not on my pants. My cellphone is off to my far right, my old test results are off to my right as well. And there are highlighters, well...everywhere. There's a laundry basket of clean clothes that is stratigically placed directly behind my computer screen. I am a firm believer in "outta sight, outta mind". lol. And I knew I wouldn't be able to focus on this if I saw there was something else that needed to be done.
But here I am. Still fighting. My inner strength is still at the top, and I'm still fighting.
I'm fighting to find out what is wrong with me. Because until I know, it seems like there's nothing I can do to fix it. Give me meds, give me a life-time dietary change, give me chemo, give me amputation....I don't care. But I need to know what's wrong so I can be proactive in fixing it. I need to hear from someone else that it's Lupus.
I can't wait until Friday. Come soon, my dear Friend.
Some days, like today, it feels like the pain I felt months ago was all part of a bad dream. It's only when I close my eyes and think back to those painful days that I remember. Days like today give me hope for the future. They make me wish for a cure for Lupus, they make me plan 5k races and walk-a-thons for Lupus awareness. They are good for me, good for my outlook on life. But they also can be detrimental. They make me want to make plans for the fall that will more than likely throw me into a flare-up in speedy time. They make me want to take that photography job, and work 12 hours days/7 days a week, simply because that's been my dream since I was a kid. They make me want to ditch school and travel overseas to study Spanish somewhere, completely immersing myself in the culture.
Days like today are both good and bad. They are the days that make me think I was crazy 5 months ago for thinking I was in pain. They make me almost forget what it felt like when I was at my worst.
But I still remember. I remember the day I had to call a friend to come drag my sorry self out of bed, because my legs were too swollen and stiff. I remember the day I got diagnosed with Lupus. I remember calling my Mom immediately after walking out of the doctor's office doors, and I remember pulling off into the chick-fil-a parking lot because my tears obstructed my vision. I remember the day I felt like a complete idiot because I left all of my groceries at Wal-mart, 3 times. I remember.
I remember the day I failed a Spanish test, because even though I had studied my heart out....I couldn't remember the words. I remember feeling like a failure.
I remember the day I turned in my running shoes for clogs because I couldn't get my swollen feet inside the stupid shoes. I remember.
I remember going to that support group and being told to "off myself" because life at my age with Lupus wasn't worth living. I remember the anger I felt after that. I remember how that one lady somehow managed to catch hold of my stubborn self, my inner strength, and pull it straight to the surface.
I remember how after that day I started fighting. I started researching. I remember.
And now here I sit, amongst all of the research I have gathered throughout the past 6 months. And I feel overwhelmed. It doesn't matter that I've read all of stuff stuff 3 times, and some I have practically memorized. It's just soooo much stuff. My GF book is off to my far left, buried under my newest binder designated to take to my 2nd opinion appointment....my pen somehow rolled under my tush. Hopefully it won't spill ink anywhere, especially not on my pants. My cellphone is off to my far right, my old test results are off to my right as well. And there are highlighters, well...everywhere. There's a laundry basket of clean clothes that is stratigically placed directly behind my computer screen. I am a firm believer in "outta sight, outta mind". lol. And I knew I wouldn't be able to focus on this if I saw there was something else that needed to be done.
But here I am. Still fighting. My inner strength is still at the top, and I'm still fighting.
I'm fighting to find out what is wrong with me. Because until I know, it seems like there's nothing I can do to fix it. Give me meds, give me a life-time dietary change, give me chemo, give me amputation....I don't care. But I need to know what's wrong so I can be proactive in fixing it. I need to hear from someone else that it's Lupus.
I can't wait until Friday. Come soon, my dear Friend.
Friday, July 9, 2010
Saturday, June 26, 2010
Good-bye Gluten
It's been 10 days since i started my gluten-free diet. I can't speak for every person with Lupus, but I can speak for myself. There is no doubt in my mind that since starting the dreaded GF diet my joint pain has significantly decreased. I've strayed from the diet a couple times. I did pay the consequences both later that day, and the following day.
I've been doing some research, and there's a lot of studies that link auto-immune diseases with gluten sensitivity. I found one article that said 100% of Lupus patients suffer from food allergies. I'm not sure how true that is, but it is true for me. I have some pretty serious cheese allergies.
I've started running again. Well, more like jogging/walking...but I gotta start somewhere. :P
It seems like my life is finally starting to fall back into place. My circumstances haven't really changed, like I am still having health issues, school is still hanging over my head, etc. but my view of the whole thing has changed.
Everything in life is a process. It takes time to process what's going on with us, especially after we are diagnosed with a disease as scary as Lupus. There's still times that I wish I could press the pause button, and just stop life so that I can deal with stuff one thing at a time. But I'm slowly making my way back to my normal, optimistic self.
A lot has happened since my last post. I've been having some teeth issues to put it mildly. I've had two fillings, and one root canal. Well, technically speaking the first stage of a root canal. My dentist put me on antibiotics and scheduled an appointment with me later this month to finish taking out the rest of my lovely, yet very infected nerve.
Needless to say, I have a very jam-packed month full of doctor's visits of varying kinds. I have a second opinion appointment scheduled the 16th, and a dentist appointment scheduled the 17th for my root canal. With any luck, I won't have to re-visit the dentist for another root canal this month. Or any month for that matter. Though I must say, the pain BEFORE the root canal is by far more painful than the pain during and/or after the root canal.
I went for a strenuous hike with a good friend of mine. We hiked 2 1/2 beautiful miles straight up the side of a mountain. It felt....amazing.
I've been doing some research, and there's a lot of studies that link auto-immune diseases with gluten sensitivity. I found one article that said 100% of Lupus patients suffer from food allergies. I'm not sure how true that is, but it is true for me. I have some pretty serious cheese allergies.
I've started running again. Well, more like jogging/walking...but I gotta start somewhere. :P
It seems like my life is finally starting to fall back into place. My circumstances haven't really changed, like I am still having health issues, school is still hanging over my head, etc. but my view of the whole thing has changed.
Everything in life is a process. It takes time to process what's going on with us, especially after we are diagnosed with a disease as scary as Lupus. There's still times that I wish I could press the pause button, and just stop life so that I can deal with stuff one thing at a time. But I'm slowly making my way back to my normal, optimistic self.
A lot has happened since my last post. I've been having some teeth issues to put it mildly. I've had two fillings, and one root canal. Well, technically speaking the first stage of a root canal. My dentist put me on antibiotics and scheduled an appointment with me later this month to finish taking out the rest of my lovely, yet very infected nerve.
Needless to say, I have a very jam-packed month full of doctor's visits of varying kinds. I have a second opinion appointment scheduled the 16th, and a dentist appointment scheduled the 17th for my root canal. With any luck, I won't have to re-visit the dentist for another root canal this month. Or any month for that matter. Though I must say, the pain BEFORE the root canal is by far more painful than the pain during and/or after the root canal.
I went for a strenuous hike with a good friend of mine. We hiked 2 1/2 beautiful miles straight up the side of a mountain. It felt....amazing.
Monday, June 21, 2010
The Girl Behind the Smile--What I wish people knew about me...
It seems that since my diagnosis, whenever I tell a person that I have Lupus I hear the phrase "But you don't look sick". I can't help but wonder whether or not this is a good thing. Sometimes I'll take it for the compliment that they meant it to be, that I look like a normal 22 year old female. But the bottom line is, it means that I am not the same person I used to be. Trust me, I "act" like a healthy person to the best of my ability. I take on this role as if I will someday win an award for best portrayal of a healthy person. But the downside is that there is no trophy, there is no prize, and I just end up alone with my feelings and everything I have kept inside. I act like I don't care--but I do. I act like I am not scared--but I'm terrified. I act like I'm okay with my diagnosis--but I'm not.
I've always been told that I am outgoing, social, and funny. One person even went so far as to describe me as a "glowing person". I have the ability to walk into a party not knowing anyone, and then walking out with everyone knowing my name. But they don't know the real me. What they see is a very calculated illusion of the healthy girl I want to be. I hate the word "illusion". I hate the negative connotation it brings, but that's what it is.
The illusion started about two years ago when I first started to feel pain. The pain got worse, and keeping my sunny personality got much harder. The illusion blossomed to wearing a bit of foundation to cover up the pale face and dark circles under my eyes--clear-tell signs that I don't sleep well at night anymore.
Now I am finding that my simple illusions have become much more complex. The worse my Lupus gets, the harder it is to keep the healthy persona going. Now I have more difficult choices to make--hair up or down? How much hair is falling out today? Did that clump of hair that was on my pillow leave a noticeable bald spot on my head when it fell out? How cold is it going to be there? Can I get away with wearing gloves to keep my fingers warmer so they don't turn blue?
It seems that now when I meet a new person, before I can even begin to consider whether or not we can be friends I must decide if they can handle my life. Can they handle my energy highs and lows? The billions of things that I am now forced to obsess over on a daily basis? Normal healthy people obsess over TV shows, sports, shopping, movies. I enjoy all of these things as well, but I can't obsess like normal people can over these things. I don't have the time, nor the energy to do so. I have to live my life different than everyone around me. I have to think about just getting up out of bed. I need to think about my medication. It's like I'm living in my own little world, with different issues, priorities, and an entirely different language that only I can speak.
When I speak to another sick person, I feel a level of understanding and pure comfort, around the people who understand both me and the "acting" me. They know me both. They know that with me, you get the real and the fake, simply to survive. My closest friends understand that. They can dig through the illusions and the crap and find me somewhere deep inside.
I once read somewhere about the "secret society of the sick". I am proud, but not lucky, to be a member of this society.
Don't get me wrong. I love my life. I love my friends, and I especially love my family. But there are so many things that I hate.
I hate people seeing me when I am sick, especially when I look sick.
I hate that my beautiful hair is falling out one curly strand at a time.
I hate that I had to take incompletes for my classes because I got too sick to finish up the semester. It makes me feel like an invalid.
I hate that everyone thinks that at any time they talk to me is another opportunity to give unsolicited medical advice.
I hate that I see my doctor's more than what I see some of my friends.
I hate living up to expectations of what a healthy person should be.
I hate living up to expectations of what being sick is.
I hate people who judge, give me advice, or questioning stares of how I handle my diagnosis or my life.
I hate that this is affecting my parents as much as it's affecting me.
I hate seeing pain in my Mother's eyes when she watches me grimace when I stand.
I hate feeling like I am not strong enough, agile enough, or beautiful enough.
I hate that I can't seem to explain to my family, whom I love more than words can describe, how I feel on a regular basis.
Basically, I hate letting people see the effects of my disease. I don't care if they know that I am sick, I just don't want them to have to see it and/or deal with it.
Therefore, I don't let them. In a weird way, this puts me more in control. I get to pick who knows the real me. I decide who to let in. It isn't so much a pride thing for me, as much as I don't want a watered down life. I don't want people automatically giving me the simplest option because they don't think I can handle it. I am a fighter. I always have been, and always will be. But I want to be able to decide if I can handle it. I want you to like me and love me because you think I am a good person, not despite the lupus--but maybe because of it.
I live in two worlds--the world of the healthy and the land of the sick. I am understood in the land of the sick, but I don't have nearly as much fun as I do in the world of the healthy. In the land of the sick I worry, I rest, I take meds, I go to doctor's visits faithfully, and I live a life of pain. When I talk to another sick person, these things are on the surface. It is easy to become depressed, or to start focusing on the negatives.
In the world of the healthy, I am forced to overcome my sickness in order to survive. I play tennis, I run, I laugh, and I have fun. In the world of the healthy, on one of my good days, I can almost forget that I have Lupus. I can almost be a normal person again.
But then the next day happens. And I'm back in the land of the sick.
The bottom line is, I straddle these two worlds. It is not my choice, but it is because this is who I am. I will have my good days and my bad. Sometimes, there will be days when I am the funny, cute girl that is a "glowing person". Then a day later or a week later, I may be that really sick girl whose glowing personality is now a distant memory. I'll be that lump of agony lying on the couch, assuming I was even able to get out of bed that day. It's all about when you catch me.
I am doing my best. I want to live in one world, with one life--no acting. But sometimes I think the illusions are easier for you to live with, so I continue my acting.
There are so many things I wish people knew about me, but I won't say. Because they don't ask and when they do, they aren't truly listening. They just pay no attention to the girl behind the smile...
*Adapted from an online article
I've always been told that I am outgoing, social, and funny. One person even went so far as to describe me as a "glowing person". I have the ability to walk into a party not knowing anyone, and then walking out with everyone knowing my name. But they don't know the real me. What they see is a very calculated illusion of the healthy girl I want to be. I hate the word "illusion". I hate the negative connotation it brings, but that's what it is.
The illusion started about two years ago when I first started to feel pain. The pain got worse, and keeping my sunny personality got much harder. The illusion blossomed to wearing a bit of foundation to cover up the pale face and dark circles under my eyes--clear-tell signs that I don't sleep well at night anymore.
Now I am finding that my simple illusions have become much more complex. The worse my Lupus gets, the harder it is to keep the healthy persona going. Now I have more difficult choices to make--hair up or down? How much hair is falling out today? Did that clump of hair that was on my pillow leave a noticeable bald spot on my head when it fell out? How cold is it going to be there? Can I get away with wearing gloves to keep my fingers warmer so they don't turn blue?
It seems that now when I meet a new person, before I can even begin to consider whether or not we can be friends I must decide if they can handle my life. Can they handle my energy highs and lows? The billions of things that I am now forced to obsess over on a daily basis? Normal healthy people obsess over TV shows, sports, shopping, movies. I enjoy all of these things as well, but I can't obsess like normal people can over these things. I don't have the time, nor the energy to do so. I have to live my life different than everyone around me. I have to think about just getting up out of bed. I need to think about my medication. It's like I'm living in my own little world, with different issues, priorities, and an entirely different language that only I can speak.
When I speak to another sick person, I feel a level of understanding and pure comfort, around the people who understand both me and the "acting" me. They know me both. They know that with me, you get the real and the fake, simply to survive. My closest friends understand that. They can dig through the illusions and the crap and find me somewhere deep inside.
I once read somewhere about the "secret society of the sick". I am proud, but not lucky, to be a member of this society.
Don't get me wrong. I love my life. I love my friends, and I especially love my family. But there are so many things that I hate.
I hate people seeing me when I am sick, especially when I look sick.
I hate that my beautiful hair is falling out one curly strand at a time.
I hate that I had to take incompletes for my classes because I got too sick to finish up the semester. It makes me feel like an invalid.
I hate that everyone thinks that at any time they talk to me is another opportunity to give unsolicited medical advice.
I hate that I see my doctor's more than what I see some of my friends.
I hate living up to expectations of what a healthy person should be.
I hate living up to expectations of what being sick is.
I hate people who judge, give me advice, or questioning stares of how I handle my diagnosis or my life.
I hate that this is affecting my parents as much as it's affecting me.
I hate seeing pain in my Mother's eyes when she watches me grimace when I stand.
I hate feeling like I am not strong enough, agile enough, or beautiful enough.
I hate that I can't seem to explain to my family, whom I love more than words can describe, how I feel on a regular basis.
Basically, I hate letting people see the effects of my disease. I don't care if they know that I am sick, I just don't want them to have to see it and/or deal with it.
Therefore, I don't let them. In a weird way, this puts me more in control. I get to pick who knows the real me. I decide who to let in. It isn't so much a pride thing for me, as much as I don't want a watered down life. I don't want people automatically giving me the simplest option because they don't think I can handle it. I am a fighter. I always have been, and always will be. But I want to be able to decide if I can handle it. I want you to like me and love me because you think I am a good person, not despite the lupus--but maybe because of it.
I live in two worlds--the world of the healthy and the land of the sick. I am understood in the land of the sick, but I don't have nearly as much fun as I do in the world of the healthy. In the land of the sick I worry, I rest, I take meds, I go to doctor's visits faithfully, and I live a life of pain. When I talk to another sick person, these things are on the surface. It is easy to become depressed, or to start focusing on the negatives.
In the world of the healthy, I am forced to overcome my sickness in order to survive. I play tennis, I run, I laugh, and I have fun. In the world of the healthy, on one of my good days, I can almost forget that I have Lupus. I can almost be a normal person again.
But then the next day happens. And I'm back in the land of the sick.
The bottom line is, I straddle these two worlds. It is not my choice, but it is because this is who I am. I will have my good days and my bad. Sometimes, there will be days when I am the funny, cute girl that is a "glowing person". Then a day later or a week later, I may be that really sick girl whose glowing personality is now a distant memory. I'll be that lump of agony lying on the couch, assuming I was even able to get out of bed that day. It's all about when you catch me.
I am doing my best. I want to live in one world, with one life--no acting. But sometimes I think the illusions are easier for you to live with, so I continue my acting.
There are so many things I wish people knew about me, but I won't say. Because they don't ask and when they do, they aren't truly listening. They just pay no attention to the girl behind the smile...
*Adapted from an online article
Sunday, June 20, 2010
Hope at the end of the tunnel...
It never ceases to amaze me at the number of people with Lupus who are long-distance runners. There's a lady by the name of Kelly who is an ultra-runner. Two others who run half-marathons, one having ran multiple marathons. And then there's me. Who used to be able to run half-marathons, and has every intention of getting to that point again.
I went "running" today. I put it in quotation marks because it was more of speed-walking with a few spouts of jogging than an all-out run. While the GF diet is helping tremendously, the joint pain is still there when I push things. It might be because I haven't ran hardly at all the past few months since my diagnosis. Actually, since even before then. It's probably been since October that I have stretched my legs and ran as hard as I possibly could. That was when things started to go down-hill really fast for me.
I've played tennis a lot this summer, but I hold myself back. I guess part of me is afraid that I'll do something to hurt myself worse than what I already am. For the first time in my life I haven't left it all out on the court.
I have a second opinion appointment scheduled for mid-July. I can't help but hope that she says something different than the first doctor. That maybe she tells me I have some curable disease, and all I have to do is get a shot to fix it. Or take these medicines to fix it. Then I can wake up the next day feeling like a normal young adult.
There are some days that I lie in bed contemplating whether or not living to see tomorrow is actually worth enduring the pain of today. Today is the third morning in a row that I woke up in minimal pain. I actually woke up with a smile on my face. I can't even remember the last day that happened. It seems like I've been in constant pain since....well, I was going to say October, but it's been since before that. I honestly can't remember the first day I woke up in pain. Pain has started to become an expected part of my life.
I went "running" today. I put it in quotation marks because it was more of speed-walking with a few spouts of jogging than an all-out run. While the GF diet is helping tremendously, the joint pain is still there when I push things. It might be because I haven't ran hardly at all the past few months since my diagnosis. Actually, since even before then. It's probably been since October that I have stretched my legs and ran as hard as I possibly could. That was when things started to go down-hill really fast for me.
I've played tennis a lot this summer, but I hold myself back. I guess part of me is afraid that I'll do something to hurt myself worse than what I already am. For the first time in my life I haven't left it all out on the court.
I have a second opinion appointment scheduled for mid-July. I can't help but hope that she says something different than the first doctor. That maybe she tells me I have some curable disease, and all I have to do is get a shot to fix it. Or take these medicines to fix it. Then I can wake up the next day feeling like a normal young adult.
There are some days that I lie in bed contemplating whether or not living to see tomorrow is actually worth enduring the pain of today. Today is the third morning in a row that I woke up in minimal pain. I actually woke up with a smile on my face. I can't even remember the last day that happened. It seems like I've been in constant pain since....well, I was going to say October, but it's been since before that. I honestly can't remember the first day I woke up in pain. Pain has started to become an expected part of my life.
Saturday, June 19, 2010
Confusion at the Grocery Store, with no white knight....
So my trip to the grocery store took slightly longer than originally planned. I was planning on baking some bread tonight and going for a run...but after the 3 hour shopping trip I'm plum pooped.
I'm not going to lie. I'm rather bummed that no handsome, single knight in shining armor came to save me and show me where the sweet white rice flour was. For the record, I have yet to find that flour. Four stores, three hours, some personal visits with customer service, and a lot of research later I have officially decided to just go with the substitute for the flour. The only reason I still believe this exists, is because I found it in a Google search. I am however, fully convinced that it does not exist in any grocery store within a 45 minute radius of my house.
I tried GF spaghetti a couple days ago. It kind of reminded me of this awful stuff I ate once when I was in China a couple years ago. It was so bad that the memory still haunts me to this day. I think if I add some oil and salt to the water next time while I'm boiling the spaghetti, it'll help tremendously. At least that's what I keep telling myself. Spaghetti is a staple in my diet, and I'm not about to give it up.
For the record, my joint pain has all but disappeared. AND it's supposed to rain tonight. Usually when the weather changes I'm in a boat load of pain. Now that I know a GF diet helps, I can't help but wonder what it is in the gluten that makes joints inflame and hurt.
I'm not going to lie. I'm rather bummed that no handsome, single knight in shining armor came to save me and show me where the sweet white rice flour was. For the record, I have yet to find that flour. Four stores, three hours, some personal visits with customer service, and a lot of research later I have officially decided to just go with the substitute for the flour. The only reason I still believe this exists, is because I found it in a Google search. I am however, fully convinced that it does not exist in any grocery store within a 45 minute radius of my house.
I tried GF spaghetti a couple days ago. It kind of reminded me of this awful stuff I ate once when I was in China a couple years ago. It was so bad that the memory still haunts me to this day. I think if I add some oil and salt to the water next time while I'm boiling the spaghetti, it'll help tremendously. At least that's what I keep telling myself. Spaghetti is a staple in my diet, and I'm not about to give it up.
For the record, my joint pain has all but disappeared. AND it's supposed to rain tonight. Usually when the weather changes I'm in a boat load of pain. Now that I know a GF diet helps, I can't help but wonder what it is in the gluten that makes joints inflame and hurt.
Gluten-free Living
I have found a God-send. The lady is outstanding. Her recipes are oober yummy, easy to make, and did I mention they taste good?
The last time I tried a gluten-free diet, I felt like I was starving myself. I hadn't done a lot of research before trying it, and had absolutely NO idea there were GF alternatives to the bread and pasta that I love.
I felt like my running time had decreased, simply because I wasn't getting the carbs that my body is used to feeding off of when I run. But times have changed. Education is power.
This is my 3rd day of a gluten-free diet and I already feel the difference. I went from being in constant pain of about an 8.7 (on a scale of 1-10), to about a 1.5. I can handle this. My optimism is coming back, and I even woke up with a smile on my face this morning. :-)
But I highly recommend you check out this lady's blog. Even if you don't need to be on a GF diet, some of these recipes are mouth-watering. I made her GF peanut butter granola bars the other day, and my roomies have just about devoured it all. I think they enjoy her recipes just as much as I do.
I'm going to try out the GF bread recipe later today. You should see my grocery list. It's filled with brown rice flour, xanthan gum (whatever that is...), sweet rice flour. I had no idea half of these things existed. Grocery shopping may take a wee bit longer this time around. lol. I can see it now--me wandering up and down the aisles in pure confusion, some handsome, single man coming to my rescue. Aaahhh....twill be wonderful.
But here's the link to her blog. Check it out if you have time.
http://glutenfree.wordpress.com/
The last time I tried a gluten-free diet, I felt like I was starving myself. I hadn't done a lot of research before trying it, and had absolutely NO idea there were GF alternatives to the bread and pasta that I love.
I felt like my running time had decreased, simply because I wasn't getting the carbs that my body is used to feeding off of when I run. But times have changed. Education is power.
This is my 3rd day of a gluten-free diet and I already feel the difference. I went from being in constant pain of about an 8.7 (on a scale of 1-10), to about a 1.5. I can handle this. My optimism is coming back, and I even woke up with a smile on my face this morning. :-)
But I highly recommend you check out this lady's blog. Even if you don't need to be on a GF diet, some of these recipes are mouth-watering. I made her GF peanut butter granola bars the other day, and my roomies have just about devoured it all. I think they enjoy her recipes just as much as I do.
I'm going to try out the GF bread recipe later today. You should see my grocery list. It's filled with brown rice flour, xanthan gum (whatever that is...), sweet rice flour. I had no idea half of these things existed. Grocery shopping may take a wee bit longer this time around. lol. I can see it now--me wandering up and down the aisles in pure confusion, some handsome, single man coming to my rescue. Aaahhh....twill be wonderful.
But here's the link to her blog. Check it out if you have time.
http://glutenfree.wordpress.com/
Thursday, June 17, 2010
Yesterday I left work shortly after I started puking in the trash can behind the counter. My manager's hastily shoved me out the door before anyone was able to see their friendly cashier throwing up. Yay for food allergies!
The only thing I can think of is that there was some type of cross-contamination with my lunch. Something, somewhere, touched cheese and then touched my food. I must say, I've been working there for almost two years and this is the first time I've ever had any problems. Needless to say, I will be packing my own food from now on. I have no desire to deal with that ever again.
I'm still seriously considering the gluten-free diet again. Still doing research to figure out what I can and cannot eat. I feel like the last time I tried it out, I was hungry ALL the time. I felt like I was starving myself. I ate stuff, I just never felt full. Also, when I was running I felt sluggish. I don't like either one of those feelings. So if I do this again, I'm going to do it in the best and healthiest way possible. There has got to be filling foods out there that are gluten-free.
The only thing I can think of is that there was some type of cross-contamination with my lunch. Something, somewhere, touched cheese and then touched my food. I must say, I've been working there for almost two years and this is the first time I've ever had any problems. Needless to say, I will be packing my own food from now on. I have no desire to deal with that ever again.
I'm still seriously considering the gluten-free diet again. Still doing research to figure out what I can and cannot eat. I feel like the last time I tried it out, I was hungry ALL the time. I felt like I was starving myself. I ate stuff, I just never felt full. Also, when I was running I felt sluggish. I don't like either one of those feelings. So if I do this again, I'm going to do it in the best and healthiest way possible. There has got to be filling foods out there that are gluten-free.
Friday, June 11, 2010
Back to my roots....
Yesterday was an unbelievably rough day. I had my rheumatologist appointment. For some reason, whenever I go to that office, I walk out feeling down and depressed. It seems like everyone in there sits and complains about their condition. Many people will groan out loud, and will share their sob stories in the waiting room.
But my doctor has decided not to treat my Lupus as of right now. I can't help but feel like he's not planning on treating it until I am lying in a hospital bed with failed kidney's. I'd much rather start taking medication now, than to wait until it's too late to live a normal life. I don't feel like my doctor listens to me, nor really cares about me as a human being...let alone one of his patients.
Needless to say, I decided yesterday to fire my rheumatologist and hire another one. So I spent the better part of the day trying to get his office to fax over my records. I've BEEN trying to get them to fax over my records for the last 3 weeks. My appointment yesterday was the last straw.
I'm afraid that I lost what sanity I was clinging onto. I have a lot of apologies to make today, some to friends and some to my poor roommates who watched me stomp in and out of the house yesterday like some crazed women.
But I've learned that a good support system is what gets people through hard times.
I'm also tossing around the idea of going on a gluten-free diet again. It helped the joint pain tremendously, I'm just not sure if I have the will power to do it successfully. Thinking of a world without Oreo's, brownies, and bread makes me feel slightly depressed. But the benefits of living in such a world--waking up in little to no pain, being able to stand up without grimacing, being able to sleep all night long without being woken up due to pain sounds amazingly wonderful.
But my doctor has decided not to treat my Lupus as of right now. I can't help but feel like he's not planning on treating it until I am lying in a hospital bed with failed kidney's. I'd much rather start taking medication now, than to wait until it's too late to live a normal life. I don't feel like my doctor listens to me, nor really cares about me as a human being...let alone one of his patients.
Needless to say, I decided yesterday to fire my rheumatologist and hire another one. So I spent the better part of the day trying to get his office to fax over my records. I've BEEN trying to get them to fax over my records for the last 3 weeks. My appointment yesterday was the last straw.
I'm afraid that I lost what sanity I was clinging onto. I have a lot of apologies to make today, some to friends and some to my poor roommates who watched me stomp in and out of the house yesterday like some crazed women.
But I've learned that a good support system is what gets people through hard times.
I'm also tossing around the idea of going on a gluten-free diet again. It helped the joint pain tremendously, I'm just not sure if I have the will power to do it successfully. Thinking of a world without Oreo's, brownies, and bread makes me feel slightly depressed. But the benefits of living in such a world--waking up in little to no pain, being able to stand up without grimacing, being able to sleep all night long without being woken up due to pain sounds amazingly wonderful.
Monday, May 3, 2010
Cheater, Cheater, Pumpkin Eater
Okay, I have a confession. I ate pumpkin yesterday, figuratively...not literally. I don't like pumpkin. But I cheated. I ate gluten foods. And I loved every minute of it.
The weird thing is, my joint pain had disappeared. Today my knees hurt a little bit. So after I finish eating my yummy Swiss cake rolls, I guess I'll lay off of the gluten for a couple more days and see what happens.
Anyways, I'm going to savor my junk food and then head out for a quick run. Have a good day!
The weird thing is, my joint pain had disappeared. Today my knees hurt a little bit. So after I finish eating my yummy Swiss cake rolls, I guess I'll lay off of the gluten for a couple more days and see what happens.
Anyways, I'm going to savor my junk food and then head out for a quick run. Have a good day!
Friday, April 30, 2010
My Gluten-free World...
I woke up this morning in a lot of pain. I'd put it at about a 6.7 on a scale of 1-10. I had promised my doc that if anything changed I'd give her a call ASAP, so I limped over to the phone and called her. She told me to come in as soon as I could. I hopped in the shower as my anxiety slowly started to rise.
Thankfully, it turned out to be nothing except good news. It turns out that my 8.5cm x 5cm cyst is now a beautiful 1.5cm X 1cm cyst. My doc seems to think that it's leaking some, and the leakage is what's causing me pain. But at the moment it looks like I won't have to get it surgically removed, and it'll disappear on it's own.
The first thought that came to mind when she told me this was "WAHOOOOOO!!!!".
She also gave me the okay to return back to work, and to start running. So since I'm finally able to keep solid foods down I am going to designate today as the first day of my 30 days of gluten-free diet. This is the first actual "diet" I have ever placed myself on, so I'm not quite sure how I feel about it.
My main goal for doing 30 days of good-bye gluten is to see if it helps with my joint pain. I have this feeling it well, because after my almost two-week long episode of clearing out my intestines, I feel 100% fine. I'm not sure why. But I have this gut feeling that it's due to food. I haven't had any foods with gluten in them since I got sick, with the exception of 3 crackers. So I'm going to go with the flow and see what happens.
I'm also going to start my running plan sometime this week. Probably Sunday evening after I get off work if I'm feeling up to it.
Thankfully, it turned out to be nothing except good news. It turns out that my 8.5cm x 5cm cyst is now a beautiful 1.5cm X 1cm cyst. My doc seems to think that it's leaking some, and the leakage is what's causing me pain. But at the moment it looks like I won't have to get it surgically removed, and it'll disappear on it's own.
The first thought that came to mind when she told me this was "WAHOOOOOO!!!!".
She also gave me the okay to return back to work, and to start running. So since I'm finally able to keep solid foods down I am going to designate today as the first day of my 30 days of gluten-free diet. This is the first actual "diet" I have ever placed myself on, so I'm not quite sure how I feel about it.
My main goal for doing 30 days of good-bye gluten is to see if it helps with my joint pain. I have this feeling it well, because after my almost two-week long episode of clearing out my intestines, I feel 100% fine. I'm not sure why. But I have this gut feeling that it's due to food. I haven't had any foods with gluten in them since I got sick, with the exception of 3 crackers. So I'm going to go with the flow and see what happens.
I'm also going to start my running plan sometime this week. Probably Sunday evening after I get off work if I'm feeling up to it.
Wednesday, April 28, 2010
The Life of the Bulimic
First off, no I am not a bulimic. I love to eat, and I despise puking. I try my best to avoid it at all costs. Unfortunately, it seems to not want to leave me alone lately. It's following me around like great aunts do at family reunions trying to pinch your cheeks. It just won't go away.
I've had to place my running aside, simply due to being so ill. The doctor's still are not sure as to what is causing my nausea and vomiting. There's a few theories out there. One being that I have a virus. The other that this is my body's way of dealing with the pain from an orange sized cyst that is in on my ovary.
Thankfully, even though the cyst is extremely large, I don't feel very much pain. It's more of this dull ache you get whenever you press against a deep bruise. Either my pain tolerance is much higher than I realized, or my God is keeping me from feeling the pain.
I started feeling sick 11 days ago. I wasn't able to keep even water down 5 days ago. Landed myself in the hospital 4 days ago with severe dehydration. They loaded me up with IVs. And may I just point out that it was one of the most painful experiences I have ever endured in my lifetime. It took them three tries and two nurses to get that stupid needle into my vein. Apparently it's rather difficult when the person has been puking non-stop, and hasn't drank water in over 24 hours. Whoops.
They ruled out a lot of stuff--gall bladder, etc. but still were not able to find the root of the problem. They told me to follow-up with my doctor on Monday (two days later). So, I stayed at my parent's house and basically puked non-stop for two straight days.
My family doctor put me on a water-only diet for 24 hours. He told me that I could add popsicles to that diet the next day. Then the third day I could start the BRAT diet (Bananas, rice, apple sauce, toast). I am on the third day.
However, the BRAT diet does not seem to be agreeing with my good ol' tummy at the moment. My fever broke a few days ago, so I'm assuming it's just my body's way of dealing with the pain from the cyst.
But that's where I am now. Still trying to keep a positive outlook on the whole situation. My doc doesn't know for sure whether or not my cyst is cancerous, so we're all in limbo at the moment. She decided to wait for 4 weeks and do more testing to determine if it's changed in size. She told me if it gets bigger, or stays the same size, they are going to remove it. But if it gets smaller, then I'll be able to go on with life without any operations.
Right now I'm praying it disappears within the next 4 weeks. I'm ready to have my energy back, and look forward to the day I can chow down on well-done steak, mashed potatoes and gravy, and green beans. Yum.
I've had to place my running aside, simply due to being so ill. The doctor's still are not sure as to what is causing my nausea and vomiting. There's a few theories out there. One being that I have a virus. The other that this is my body's way of dealing with the pain from an orange sized cyst that is in on my ovary.
Thankfully, even though the cyst is extremely large, I don't feel very much pain. It's more of this dull ache you get whenever you press against a deep bruise. Either my pain tolerance is much higher than I realized, or my God is keeping me from feeling the pain.
I started feeling sick 11 days ago. I wasn't able to keep even water down 5 days ago. Landed myself in the hospital 4 days ago with severe dehydration. They loaded me up with IVs. And may I just point out that it was one of the most painful experiences I have ever endured in my lifetime. It took them three tries and two nurses to get that stupid needle into my vein. Apparently it's rather difficult when the person has been puking non-stop, and hasn't drank water in over 24 hours. Whoops.
They ruled out a lot of stuff--gall bladder, etc. but still were not able to find the root of the problem. They told me to follow-up with my doctor on Monday (two days later). So, I stayed at my parent's house and basically puked non-stop for two straight days.
My family doctor put me on a water-only diet for 24 hours. He told me that I could add popsicles to that diet the next day. Then the third day I could start the BRAT diet (Bananas, rice, apple sauce, toast). I am on the third day.
However, the BRAT diet does not seem to be agreeing with my good ol' tummy at the moment. My fever broke a few days ago, so I'm assuming it's just my body's way of dealing with the pain from the cyst.
But that's where I am now. Still trying to keep a positive outlook on the whole situation. My doc doesn't know for sure whether or not my cyst is cancerous, so we're all in limbo at the moment. She decided to wait for 4 weeks and do more testing to determine if it's changed in size. She told me if it gets bigger, or stays the same size, they are going to remove it. But if it gets smaller, then I'll be able to go on with life without any operations.
Right now I'm praying it disappears within the next 4 weeks. I'm ready to have my energy back, and look forward to the day I can chow down on well-done steak, mashed potatoes and gravy, and green beans. Yum.
Thursday, April 22, 2010
I realized I haven't blogged in a while. I have recently found myself with extraordinary amounts of free time, due to a reoccurring high fever that just won't leave me alone.
I started running a fever Saturday, and can't seem to get rid of it. I went to the doctor's Monday and was diagnosed with strep. I got some medicine, took it faithfully, and....still have a high fever. Yesterday was the worst, it got all the way up to 103.8!
Needless to say, I am starting to go stir-crazy. I haven't really left the house from fear of passing my germs to some poor, innocent, kid who doesn't deserve to be sick. I would rather be selfish with my germs and not share them with poor little Billy Bob who is 5 years old.
All of this extra time has allowed me to reach a few conclusions. The first being that I am going to put myself on the same running plan I did 2 years ago when I first started running. It worked then, so I see no reason why it would not work now.
When I had first started running, I asked around to see what a good running plan would be for someone who hadn't really ran before. Everyone I talked to seemed to point to something that was called "From Couch Potato to 5K Runner's Plan".
I highly suggest this plan to anyone who wants to get into running. It works.
The second decision that I have made, is that I am going to put myself on a gluten-free diet for 30 days to see if it helps control my Lupus at all. I plan to start this diet as soon as I can go a full 24 hours without a fever. Which hopefully is soon.
Anyways, it's time for my nap. Have a wonderful day!
I started running a fever Saturday, and can't seem to get rid of it. I went to the doctor's Monday and was diagnosed with strep. I got some medicine, took it faithfully, and....still have a high fever. Yesterday was the worst, it got all the way up to 103.8!
Needless to say, I am starting to go stir-crazy. I haven't really left the house from fear of passing my germs to some poor, innocent, kid who doesn't deserve to be sick. I would rather be selfish with my germs and not share them with poor little Billy Bob who is 5 years old.
All of this extra time has allowed me to reach a few conclusions. The first being that I am going to put myself on the same running plan I did 2 years ago when I first started running. It worked then, so I see no reason why it would not work now.
When I had first started running, I asked around to see what a good running plan would be for someone who hadn't really ran before. Everyone I talked to seemed to point to something that was called "From Couch Potato to 5K Runner's Plan".
I highly suggest this plan to anyone who wants to get into running. It works.
The second decision that I have made, is that I am going to put myself on a gluten-free diet for 30 days to see if it helps control my Lupus at all. I plan to start this diet as soon as I can go a full 24 hours without a fever. Which hopefully is soon.
Anyways, it's time for my nap. Have a wonderful day!
Wednesday, April 7, 2010
Get Comfortable Being Uncomfortable...
Yesterday I went to a Support Group for Lupus and Arthritis. Yeah, that was HUGE mistake. It turned out to be a 3 hour long "woe is me" complaining session. Definitely not what I was looking for. I sat next to this old lady who looked over at me and said, "Awww. You poor thing! You're so young! You should just commit suicide, hunny. It's the best thing for you. There's no way you'll be able to handle the pain for the rest of your life. Just go ahead and get it over with. I wish I would have done that when I was younger." No lie. It's what that lady told me.
I was fuming by the time I left. The word "mad" does not even begin to describe how I felt. I called a couple of my friends and complained to them about how awful this "support" group was. Some support group...telling me to kill myself. Humph.
But then as I was talking to my best friend, I got to thinking, here I am complaining about a whole bunch of complainers. That would make me a hypocrite wouldn't it?
But I have reached the conclusion that in order to live with something like Lupus, something that causes you chronic pain is to "Get comfortable being uncomfortable".
That's the saying I lived by when I trained for my half-marathon. There were days that I woke up sore, thinking that I would never be able to run 13 miles. But I kept my eyes on the finish line. I wrote that saying down, and taped it above my training calender. I looked at it every morning when I got up, and every night before I went to bed.
Running 13 miles was anything but easy. It was hard. It was a major time commitment. I was on a strict schedule, and I didn't get to hang out with my friends or family as often as I would have liked. But ya know what? I don't regret it at all. In fact, I'm really contemplating doing another half-marathon.
That is the saying I'm going to start living by, cause all I need to do is "get comfortable being uncomfortable". I don't want to live the rest of my life popping pain medicine, and I don't want to become an addict. After all, I am only 21 years old with a life full of surprised ahead of me. All this Lupus thing is, is just another obstacle for me to overcome. I've overcome many in my lifetime, and I am sure there will be many more to come.
I was fuming by the time I left. The word "mad" does not even begin to describe how I felt. I called a couple of my friends and complained to them about how awful this "support" group was. Some support group...telling me to kill myself. Humph.
But then as I was talking to my best friend, I got to thinking, here I am complaining about a whole bunch of complainers. That would make me a hypocrite wouldn't it?
But I have reached the conclusion that in order to live with something like Lupus, something that causes you chronic pain is to "Get comfortable being uncomfortable".
That's the saying I lived by when I trained for my half-marathon. There were days that I woke up sore, thinking that I would never be able to run 13 miles. But I kept my eyes on the finish line. I wrote that saying down, and taped it above my training calender. I looked at it every morning when I got up, and every night before I went to bed.
Running 13 miles was anything but easy. It was hard. It was a major time commitment. I was on a strict schedule, and I didn't get to hang out with my friends or family as often as I would have liked. But ya know what? I don't regret it at all. In fact, I'm really contemplating doing another half-marathon.
That is the saying I'm going to start living by, cause all I need to do is "get comfortable being uncomfortable". I don't want to live the rest of my life popping pain medicine, and I don't want to become an addict. After all, I am only 21 years old with a life full of surprised ahead of me. All this Lupus thing is, is just another obstacle for me to overcome. I've overcome many in my lifetime, and I am sure there will be many more to come.
Sunday, April 4, 2010
Am I a dumb blonde, or is it memory loss?
So funny story...
I went grocery shopping a couple weeks ago (a week or so after being put on Plaquenil) and bought close to 50 dollars worth of groceries. I had been having so many problems with fatigue and painful knees that I just had not felt up to shopping before then. I definitely was down to the bare-necessities. I somehow managed to leave all of my bags of groceries there, with the exception of two bags...
I didn't realize it until I arrived home, and started unpacking my groceries. I searched my whole entire car wondering where the rest of my food was. Lol. I felt like an idiot when I called the store back asking if the bags were there. At least he Customer Service lady was nice.
I went back to the store, got my bags, and went home. It was once I arrived at home that I realized that I had left my wallet at the Customer Service desk. *sigh* So I went back to the store for a third time, only to leave my car keys at the Service desk.
Needless to say, this has been happening to be very frequently lately. I have went from having the memory of an elephant to having problems remembering where I am supposed to be two hours from now.
I went to my doc and told him about this whole thing. Apparently this could either be Lupus causing my memory loss, or the Plaquenil. He took me off the medicine for two weeks to find out which one was the culprit.
I'm not gonna lie. I'm hoping it's the Plaquenil. THAT is easily fixed. If Lupus is causing this, then I'm going to be senile at the age of 21. Awesome.
Anyways, I'll keep ya'll posted.
I went grocery shopping a couple weeks ago (a week or so after being put on Plaquenil) and bought close to 50 dollars worth of groceries. I had been having so many problems with fatigue and painful knees that I just had not felt up to shopping before then. I definitely was down to the bare-necessities. I somehow managed to leave all of my bags of groceries there, with the exception of two bags...
I didn't realize it until I arrived home, and started unpacking my groceries. I searched my whole entire car wondering where the rest of my food was. Lol. I felt like an idiot when I called the store back asking if the bags were there. At least he Customer Service lady was nice.
I went back to the store, got my bags, and went home. It was once I arrived at home that I realized that I had left my wallet at the Customer Service desk. *sigh* So I went back to the store for a third time, only to leave my car keys at the Service desk.
Needless to say, this has been happening to be very frequently lately. I have went from having the memory of an elephant to having problems remembering where I am supposed to be two hours from now.
I went to my doc and told him about this whole thing. Apparently this could either be Lupus causing my memory loss, or the Plaquenil. He took me off the medicine for two weeks to find out which one was the culprit.
I'm not gonna lie. I'm hoping it's the Plaquenil. THAT is easily fixed. If Lupus is causing this, then I'm going to be senile at the age of 21. Awesome.
Anyways, I'll keep ya'll posted.
Wednesday, March 24, 2010
My body, the official weather-woman
Ever take your temperature multiple times hoping that the triple digit number will become at least two digits? Yeah, that definitely is me today...
I have taken my temperature 12 times within the past 3 minutes desperately hoping that my 100.5 fever will go down into the 90's. Because once it goes down, I know the stiffness in my knees will go down as well.
I've had a lot of people ask me how I feel when I have a flare-up. So, allow me to share with you how I'm currently feeling:
I feel like crap. My knees are stiff, there's pain in both legs, I'm running a fever, I have this stupid rash on my face, I have absolutely no appetite, I'm cold because of my fever, my knees are swollen, I'm exhausted, I have a headache, and...I woke up with a ball of hair on my pillow.
Now, allow me to tell you what all I have accomplished today despite my flare-up.
I have worked a 7 hour shift, I grocery shopped, I went for a walk (not a run, as I have come to the conclusion that wouldn't help me much), and now I'm off to class to take an exam and then play a couple games of ping pong.
I don't like my body at the moment, but I know my limitations. I went for my walk because I honestly think it helps my knees feel better, and it helps me have more energy.
Needless to say, I have this strange feeling that it's going to rain within the next 24 hours. My body is warning me to keep my umbrella with me at all times tomorrow. My body hasn't let me down yet when warning me about the weather, and I doubt it'll start now.
Some flare-up's are worse than others. But I have reached the conclusion that if I were to call in sick to work, or skip class, I have let lupus win.
Some days I feel like I can't handle my lupus, but most days it can't handle me. :-)
I have taken my temperature 12 times within the past 3 minutes desperately hoping that my 100.5 fever will go down into the 90's. Because once it goes down, I know the stiffness in my knees will go down as well.
I've had a lot of people ask me how I feel when I have a flare-up. So, allow me to share with you how I'm currently feeling:
I feel like crap. My knees are stiff, there's pain in both legs, I'm running a fever, I have this stupid rash on my face, I have absolutely no appetite, I'm cold because of my fever, my knees are swollen, I'm exhausted, I have a headache, and...I woke up with a ball of hair on my pillow.
Now, allow me to tell you what all I have accomplished today despite my flare-up.
I have worked a 7 hour shift, I grocery shopped, I went for a walk (not a run, as I have come to the conclusion that wouldn't help me much), and now I'm off to class to take an exam and then play a couple games of ping pong.
I don't like my body at the moment, but I know my limitations. I went for my walk because I honestly think it helps my knees feel better, and it helps me have more energy.
Needless to say, I have this strange feeling that it's going to rain within the next 24 hours. My body is warning me to keep my umbrella with me at all times tomorrow. My body hasn't let me down yet when warning me about the weather, and I doubt it'll start now.
Some flare-up's are worse than others. But I have reached the conclusion that if I were to call in sick to work, or skip class, I have let lupus win.
Some days I feel like I can't handle my lupus, but most days it can't handle me. :-)
Thursday, March 18, 2010
Take that! You...you....autoimmune disease...
I have reached the conclusion that Lupus is one of the most spontaneous companions I have ever met in my life. I've always considered myself to be spontaneous, but I have met my match. I have officially found someone, well...something, that has beaten me at my spontaneity.
It seems that one day I feel perfectly fine, like I'm queen of the world. And then the next I'm lying in bed praying for someone to find a cure to end my misery.
But today I feel like I am Queen of the World. And for that I am extremely grateful.
I ran for the first time today since I've started having problems. *sigh* And I feel...outstanding. I felt the burn in my legs, struggled with my lungs as I fought to keep my breathing even, and I feel like a million bucks.
Today I have won the battle against my Lupus.
It seems that one day I feel perfectly fine, like I'm queen of the world. And then the next I'm lying in bed praying for someone to find a cure to end my misery.
But today I feel like I am Queen of the World. And for that I am extremely grateful.
I ran for the first time today since I've started having problems. *sigh* And I feel...outstanding. I felt the burn in my legs, struggled with my lungs as I fought to keep my breathing even, and I feel like a million bucks.
Today I have won the battle against my Lupus.
Wednesday, March 17, 2010
When It Rains, It Pours...
This is the first blog of the rest of my life. I was diagnosed with Lupus five days ago, but for some reason it feels like it's been longer than that. Considering my active life-style, this definitely came as quite the blow. While I've only recently had a name for my chronic fatigue and achy knees, I've been having problems for a while. I kept on researching my symptoms, hoping I'd find the disease that would be perfect. One that would be curable. I wanted to go to the doctor, point at a disease and say "Yo Doc...I want THIS one!". *sigh* But to no avail. I have Lupus.
It isn't as bad as I thought it would be. I mean, I didn't just suddenly wake-up one day and develop Lupus. I've had it for a while. Which means, I've been running, playing tennis, swimming, bike riding, and playing volleyball with Lupus for Lord only knows how long....and I definitely plan to continue to do so.
I, being myself, have researched this "running with Lupus" thing quite in depth. It appears that it is not recommended, BUT it is possible. :-) That translates to: Amanda is gonna run. Not only am I going to run, but I have every intention of proving to my new constant companion that I WILL overcome. I want to run a 10K by this time next year. I WAS...."was" being the operative word...physically capable of doing such, and actually did run a 10K this time last year. And I enjoyed every second of hearing my feet pounding on the ground, of wiping away the sweat on my face, of feeling that burn in my legs when I know that I am pushing myself to the ultimate extreme. I LOVE that feeling. I want it back. And I am now determined to have it back.
I found a few blogs on this issue that I know my friends and family (who are probably worried about my new goal in life) will want to check out. The first one is this lady named Kelly. She's an ultra-runner, meaning her "easy" day consists of running a minimum of 25 miles.
The second one is this lady named Lupe. She's got one of the most positive outlooks I have seen from a person with a chronic disease in a LONG time.
Anyways, it's a pretty day outside and I plan on enjoying it to the fullest extreme. Have fun playing in the sun!
http://ridgrunner.blogspot.com/ (be sure to check out the newspaper article on the lower right-hand side of the screen. You have to scroll down a bit to find it)
http://lulucakes.com/?p=252
It isn't as bad as I thought it would be. I mean, I didn't just suddenly wake-up one day and develop Lupus. I've had it for a while. Which means, I've been running, playing tennis, swimming, bike riding, and playing volleyball with Lupus for Lord only knows how long....and I definitely plan to continue to do so.
I, being myself, have researched this "running with Lupus" thing quite in depth. It appears that it is not recommended, BUT it is possible. :-) That translates to: Amanda is gonna run. Not only am I going to run, but I have every intention of proving to my new constant companion that I WILL overcome. I want to run a 10K by this time next year. I WAS...."was" being the operative word...physically capable of doing such, and actually did run a 10K this time last year. And I enjoyed every second of hearing my feet pounding on the ground, of wiping away the sweat on my face, of feeling that burn in my legs when I know that I am pushing myself to the ultimate extreme. I LOVE that feeling. I want it back. And I am now determined to have it back.
I found a few blogs on this issue that I know my friends and family (who are probably worried about my new goal in life) will want to check out. The first one is this lady named Kelly. She's an ultra-runner, meaning her "easy" day consists of running a minimum of 25 miles.
The second one is this lady named Lupe. She's got one of the most positive outlooks I have seen from a person with a chronic disease in a LONG time.
Anyways, it's a pretty day outside and I plan on enjoying it to the fullest extreme. Have fun playing in the sun!
http://ridgrunner.blogspot.com/ (be sure to check out the newspaper article on the lower right-hand side of the screen. You have to scroll down a bit to find it)
http://lulucakes.com/?p=252
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