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'No Cure'...The 2 words that will change your life forever
- Jun 26, 2009 at 11:31 AM
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Everybody's read a story somewhere about somebody who received a devastating diagnosis...be it cancer or heart attack or something like that. The storyteller always says that they remember the moment they first heard the words 'there is no cure' come from their Doctor's lips. They can give you the time and date and tell you what they first thought. I am not one of those people. I first heard those words two years ago. I actually heard them twice before it finally sunk in for good. The 3rd time I heard them was when the diagnosis was confirmed by my rheumatologist. I don't remember the date...October maybe? I don't remember what I was wearing. I do remember he held my hands and looked in my eyes and told me 'Unfortunately, there is no cure right now for Lupus. All we can do is manage your pain and your symptoms. But rest assured that I DO believe you are in pain and I will take your concerns and complaints seriously and I will do everything I can to help you manage your symptoms. Since Lupus is a chronic illness, it means you will live with it for the rest of your life. You will basically feel like you have a cold or virus and it will make you feel kinda crappy every day. And that's on the good days when you're not actually having a cold or virus or in the middle of a flare. I'm really sorry to have to tell you this, hun...but we will do all we can to help you.'
Nothing will throw your life more for a loop than hearing the words 'no cure'. We trust medicine, after all. Enormous strides have been made in medical acheivements. I mean, they transplanted a face from one person to another! We have conquered polio! We have Viagra for fuck's sake! Yet, still, these words continue to haunt millions of Americans every year. I'm one of those people. I have Lupus. Actually, what I have is called systemic lupus erythematosus...or SLE. Basically, my immune system has decided, in a most fucked up way, that my own BODY is the enemy. And so it's taking it out...starting with my joints. It causes me daily pain and swelling in my joints...mostly my hands. Since it's busy attacking my joints, it can't be bothered to take care of the REAL illnesses that my body encounters. This means that I catch every little cold and virus that is floating around. It also means that the stomach virus that puts you in bed for a day or so knocks me around for 2 weeks. (No kidding...I caught my daughter's rota virus, which usually doesn't affect adults, and it fucked me up for 2 weeks and dehydrated me to the point of needing IV fluids.) SLE can cause anemia...which is low iron levels in my blood. My body doesn't store iron the way it should so I have to take iron supplements. When those don't work, I have to get iron IV treatments. Lupus makes me tired...so very, very tired. I have been so tired before that just the effort to breathe feels like it's to much and I just wish I could hook myself up to an oxygen tank and let it breathe for me.
I have pills...so many pills. I take, on average, 7 pills every day. Sometimes more than 10 depending on my pain and if I'm nauseaus or having some stomach problems that day from the meds. The side effects aren't always fun. The steroids take away the inflammation, but they cause weight gain. The Plaquenil takes away the pain and inflammation, but it may make me go blind so I have to check my eyes once a week. The Cymbalta helps with the pain and depression...but it makes me nauseaus so I have the phenergran which makes me sleepy. The pain pills aren't narcotics since my doc doesn't want me dependant on those, so they might as well be tic tacs for all they do for the pain. And of course with the stress and the pain I have to have the Lunesta to even think about getting any sleep at night. And of course, all these pills mess with my mood and make life a little more difficult. These pills cost money. Oh, I have insurance...but I still end up shelling out almost $100 a month on these co-pays. I'm always seeing a doctor for something. More co-pays. And physical therapy...even more co-pays. Being sick isn't cheap. Without the insurance my husband's company offers, I'd be dead by now, I'm convinced. Thank you, Nucor and thank you, Blue Cross/Blue Shield.
Now, I'm the one with the illness, but I'm not the only one affected. See, chronic illness touches everybody. I have had to cut back at work. I gave up a great-paying position at my job because I couldn't do it anymore. This hurt our bottom line and means that the job of bringing home the bacon falls more on my husband. Let's talk about my husband. When people get married, they say 'in sickness and in health' but let's be honest...we all imagine that you won't have to face that part until you are both well into the sunset years. Nobody would say those words if they told you that you would have to honor them while your spouse was still young and that the sickness part would last for the rest of your lives. Nobody imagines that you might actually have to make good on that promise. I hate what being sick does to my family. I hate having to depend on my husband so much even though he never complains. I hate being limited in what I can do with my kids. I hate that the medicine makes me to sick to feel sexy and I hate that my husband has to watch his wife...a woman that used to be so vibrant and energetic and full of life...be like this. I feel like I cheated him out of something. He never complains...he takes care of me and does what he can to alleviate my pain and make my life easier. Thank you, my love.
Then there's the family and friend's that don't really know how badly sick you are and don't really bother to find out. It makes you angry but at the same time, you don't want them to know because then they may try to help and that would make you feel guilty or they might NOT try to help and that would make you feel like they didn't care. So, you keep it to yourself and you try not to complain to much because really, nobody wants to listen to you whine all the time and truthfully, you get tired of talking about yourself over and over and over...and you don't even look sick...that's the worst part.
Oh yes, the worst part...YOU. DON'T. EVEN. LOOK. SICK. This is the part that fucks with you and your head. You know you feel bad. You feel the pain, you see the inflammation. The doctor has run the tests...the tests say you are sick. But You? You look normal...same as you always did. Oh, maybe you look a little tired and there is that redness to your face (called a 'butterfly rash...common in Lupus sufferers) thanks to the rash and steroids...but otherwise, you look normal. So, when you say you're sick...people look at you funny. You know they don't believe you. You know they talk behind your back and say you're faking it or you're a hypochondriac or it's all in your head. The fucked up part? YOU START TO BELIEVE THEM! That's right...you doubt your own sanity and your own doctors and you don't want to believe what your own body is screaming at you. You think...maybe I'm not sick...maybe they are wrong...maybe it's just a normal cold...I'll get better eventually. Because to think that you won't...to think that this will be with you, and in fact get worse, for the rest of your life is so depressing and almost to much to bear.
Time takes on a different life when you have a chronic illness. See, everybody believes life is long and they have all this time. But, when you're sick...life is really long...except when it comes to the things you want to do. I have always enjoyed working. I stayed home with my kids for many years but only because it was easier that way with my husband's work schedule. I really do enjoy working. I can't work now like I used to...in fact, I only have a few years left to work before I am most likely going to be to disabled to work. I enjoy other things, too. I love to write... but it's hard for me to write now. I used to write in a journal...in pen. I can't do that anymore...it hurts my hands. I used to write long letters to friends...there's something sweet and intimate about handwritten notes. These days, I'm lucky if I can jot off a short card. I used to work out in the gym. My body was strong. I took pride in being a tall, sturdily built woman. I can't do that anymore. I love to ride horses...I still do. Just not as often and when I do it, I know I am going to be in A LOT of pain for at least 2 days afterwards. They will have to pry me out of that saddle...I refuse to give up the horses. I used to travel a lot. Now, riding for long distances is hard so I don't do it as much. I used to swim and loved to work in the yard...now, the sun is bad for me. All the things I love to do...I don't have a lot of time left to do them in...Lupus will slowly rob me of my ability to do these things. Time is short for me as far as what I will be capable of...after that, it will be very long as I just sit and wait for...whatever.
So, that's it...that's my life now. It's not pretty, is it? And since this isn't a Lifetime movie, there is no miracle cure to save me in the last 15 minutes of the flick. I have always been a fighter in my life. There hasn't been an obstacle I couldn't overcome. But this time...there's nothing to fight. There is no end to this and so there's nothing to look forward to. There is no way to stop this freight train. All I can do is try to slow it down and enjoy the scenery before it slams into me. Some days are good...others? not so good. But this is my life now...'no cure' you say? Well, then...time to get on with living because the truth is, none of us gets out of here alive.
Nothing will throw your life more for a loop than hearing the words 'no cure'. We trust medicine, after all. Enormous strides have been made in medical acheivements. I mean, they transplanted a face from one person to another! We have conquered polio! We have Viagra for fuck's sake! Yet, still, these words continue to haunt millions of Americans every year. I'm one of those people. I have Lupus. Actually, what I have is called systemic lupus erythematosus...or SLE. Basically, my immune system has decided, in a most fucked up way, that my own BODY is the enemy. And so it's taking it out...starting with my joints. It causes me daily pain and swelling in my joints...mostly my hands. Since it's busy attacking my joints, it can't be bothered to take care of the REAL illnesses that my body encounters. This means that I catch every little cold and virus that is floating around. It also means that the stomach virus that puts you in bed for a day or so knocks me around for 2 weeks. (No kidding...I caught my daughter's rota virus, which usually doesn't affect adults, and it fucked me up for 2 weeks and dehydrated me to the point of needing IV fluids.) SLE can cause anemia...which is low iron levels in my blood. My body doesn't store iron the way it should so I have to take iron supplements. When those don't work, I have to get iron IV treatments. Lupus makes me tired...so very, very tired. I have been so tired before that just the effort to breathe feels like it's to much and I just wish I could hook myself up to an oxygen tank and let it breathe for me.
I have pills...so many pills. I take, on average, 7 pills every day. Sometimes more than 10 depending on my pain and if I'm nauseaus or having some stomach problems that day from the meds. The side effects aren't always fun. The steroids take away the inflammation, but they cause weight gain. The Plaquenil takes away the pain and inflammation, but it may make me go blind so I have to check my eyes once a week. The Cymbalta helps with the pain and depression...but it makes me nauseaus so I have the phenergran which makes me sleepy. The pain pills aren't narcotics since my doc doesn't want me dependant on those, so they might as well be tic tacs for all they do for the pain. And of course with the stress and the pain I have to have the Lunesta to even think about getting any sleep at night. And of course, all these pills mess with my mood and make life a little more difficult. These pills cost money. Oh, I have insurance...but I still end up shelling out almost $100 a month on these co-pays. I'm always seeing a doctor for something. More co-pays. And physical therapy...even more co-pays. Being sick isn't cheap. Without the insurance my husband's company offers, I'd be dead by now, I'm convinced. Thank you, Nucor and thank you, Blue Cross/Blue Shield.
Now, I'm the one with the illness, but I'm not the only one affected. See, chronic illness touches everybody. I have had to cut back at work. I gave up a great-paying position at my job because I couldn't do it anymore. This hurt our bottom line and means that the job of bringing home the bacon falls more on my husband. Let's talk about my husband. When people get married, they say 'in sickness and in health' but let's be honest...we all imagine that you won't have to face that part until you are both well into the sunset years. Nobody would say those words if they told you that you would have to honor them while your spouse was still young and that the sickness part would last for the rest of your lives. Nobody imagines that you might actually have to make good on that promise. I hate what being sick does to my family. I hate having to depend on my husband so much even though he never complains. I hate being limited in what I can do with my kids. I hate that the medicine makes me to sick to feel sexy and I hate that my husband has to watch his wife...a woman that used to be so vibrant and energetic and full of life...be like this. I feel like I cheated him out of something. He never complains...he takes care of me and does what he can to alleviate my pain and make my life easier. Thank you, my love.
Then there's the family and friend's that don't really know how badly sick you are and don't really bother to find out. It makes you angry but at the same time, you don't want them to know because then they may try to help and that would make you feel guilty or they might NOT try to help and that would make you feel like they didn't care. So, you keep it to yourself and you try not to complain to much because really, nobody wants to listen to you whine all the time and truthfully, you get tired of talking about yourself over and over and over...and you don't even look sick...that's the worst part.
Oh yes, the worst part...YOU. DON'T. EVEN. LOOK. SICK. This is the part that fucks with you and your head. You know you feel bad. You feel the pain, you see the inflammation. The doctor has run the tests...the tests say you are sick. But You? You look normal...same as you always did. Oh, maybe you look a little tired and there is that redness to your face (called a 'butterfly rash...common in Lupus sufferers) thanks to the rash and steroids...but otherwise, you look normal. So, when you say you're sick...people look at you funny. You know they don't believe you. You know they talk behind your back and say you're faking it or you're a hypochondriac or it's all in your head. The fucked up part? YOU START TO BELIEVE THEM! That's right...you doubt your own sanity and your own doctors and you don't want to believe what your own body is screaming at you. You think...maybe I'm not sick...maybe they are wrong...maybe it's just a normal cold...I'll get better eventually. Because to think that you won't...to think that this will be with you, and in fact get worse, for the rest of your life is so depressing and almost to much to bear.
Time takes on a different life when you have a chronic illness. See, everybody believes life is long and they have all this time. But, when you're sick...life is really long...except when it comes to the things you want to do. I have always enjoyed working. I stayed home with my kids for many years but only because it was easier that way with my husband's work schedule. I really do enjoy working. I can't work now like I used to...in fact, I only have a few years left to work before I am most likely going to be to disabled to work. I enjoy other things, too. I love to write... but it's hard for me to write now. I used to write in a journal...in pen. I can't do that anymore...it hurts my hands. I used to write long letters to friends...there's something sweet and intimate about handwritten notes. These days, I'm lucky if I can jot off a short card. I used to work out in the gym. My body was strong. I took pride in being a tall, sturdily built woman. I can't do that anymore. I love to ride horses...I still do. Just not as often and when I do it, I know I am going to be in A LOT of pain for at least 2 days afterwards. They will have to pry me out of that saddle...I refuse to give up the horses. I used to travel a lot. Now, riding for long distances is hard so I don't do it as much. I used to swim and loved to work in the yard...now, the sun is bad for me. All the things I love to do...I don't have a lot of time left to do them in...Lupus will slowly rob me of my ability to do these things. Time is short for me as far as what I will be capable of...after that, it will be very long as I just sit and wait for...whatever.
So, that's it...that's my life now. It's not pretty, is it? And since this isn't a Lifetime movie, there is no miracle cure to save me in the last 15 minutes of the flick. I have always been a fighter in my life. There hasn't been an obstacle I couldn't overcome. But this time...there's nothing to fight. There is no end to this and so there's nothing to look forward to. There is no way to stop this freight train. All I can do is try to slow it down and enjoy the scenery before it slams into me. Some days are good...others? not so good. But this is my life now...'no cure' you say? Well, then...time to get on with living because the truth is, none of us gets out of here alive.
Comments:
1-3 of 3 comments
1
Jun. 26, 2009 at 5:25 PM
My daughter was diagnoised with the same type lupus as you when she was 15 yrs old. Getting her thru school was horrible, missed alot of days. She has had two beautiful daughters with no lupus related problems, thank God. She is 35 yrs old now & feels like the disease is creeping back into her life. She has a appt with a specialist the first of July, please include her in your prayers & I most definately will include you in mine. I have fibromyalgia & I understand how you can feel so terriably bad & still look as though nothing is wrong.....it is very depressing. My hugs & prayers to you & for you my dear!
Jun. 30, 2009 at 9:18 AM
Beautifully said Kaye. I can sympathize with every single word. It's so hard to be sick and watch your family suffer as well. Well, we think they're suffering but they're still just glad to have us, no matter what shape we're in.
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Meet jessicasmom1
This Pennsylvania mom of a 12-year-old girl wishes her daughter's father was still alive to see his little girl all grown up now.
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I can't say I understand, but wanted to say I'm very sorry you are living with a disease that has no cure. Lots of hugs
- Mommyof4kiddos
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