Well, today is one of the longest I have had in some time. I was up all night last night, taking care of my mil. I took her to the doctor yesterday, and they said she had double pneumonia, bronchitis, fever, and coughing. After we got home, her coughing increased to the point that she was vomiting everything she attempted to drink. She ended up in the recliner where she caught a few snippets of sleep off and on. The doctor gave her an inhaler, someprednisone, and a z-pack. However, when she was still struggling this morning, I called the doctors office and asked what I should do. They called back and said bring her back in now. So, I did.
This time, the doctors were more concerned because my mil was extremely pale, clammy, and her coughing was much worse. They did a chest x-ray and when it came back, they said they did nto see anything but that it could develop in the next 8-12 hours. They gave her a new rx for phenergen/codeine cough syrup, gave her a shot of phenergen and another antibiotic, and said that if she is not better by suppertime tonight, we are to take her to the er and she would be admitted. The doctor explained that they have to do this process because of insurance and where they could have just admitted her in the past, now they have to do all these things BEFORE she could be admitted. What a crock!
So, now I am running on very little sleep, and having to remail awake because they are bringing her a nebulizer and medicine for breathing treatments and someone haas to be awake to get it. I plan on trying to sleep a little on the couch while I wait.
As for me, I hurt, am exhausted, and hopefully will not flare up too badly because of this. I feel very strongly about taking care of my elderly parents (or parent in law), and I feel it is a priviledge to provide care for them when they need me. It is a God given command that we look after our families and so it is not to be taken lightly. I feel that obligation now and will do what I can to provide her with the best care possible and in my power.
Also wanted to add that my woozie woo woo pill was supposed to start the double dose today but I postponed it due to all the things going on. I cannot be woozie and maintain. I will begin it when able to.
I am sad that it does nto look good for attending the Lords Evening Meal. I have never missed one before, but this time it may be the first. This would be my 14th year celebrating it. My mil said it will be only the second one she has missed ( in like 40 some years). I cnanot leave her here alone and she is contagious so we will see how it plays out. On the plus side, we can tie in by phone at least so that seems to be our option right now (considering hubs is sick too). So, the only thing that I celebrate in accord with Jesus' command, I will not be attending, due to this sickness. I feel sure Jehovah will understand and I hope not to ever miss another one. It is what it is and time and unforeseen occurences befall us all.
That is my day so far. Maybe catch a few winks before machine arrives... toodles everyone!
Tuesday, March 30, 2010
Monday, March 29, 2010
Doctors visit today
I went to see my rheumy today. They took vials fo blood, and discussed the new meds I am taking. The drug trial I am in is progressing nicely and hope it will be approved this year.
On the plus side, he told me to call my neurologist to discuss my dosage of the neurontin. The reason I even discussed it with him is that when I got into bed last night, I fell out again. I fell onto the floor next to the bed. Normally, there is nothing on the floor. However, since we are getting ready to go to the campground, I have boxes stacked and so when I fell, I fell into boxes from my shoulders down. I hit my right leg on a box and it caused a leg cramp on the upper right leg as I was laying on top of these boxes. Poor hubs, not only did I wake him up when I fell, now I was screeching because I have this leg cramp! I was trying to stretch my leg out up into the air and hubs was trying to get me up off the floor. It was a comedy of errors.
So, in retrospect, today was a normal visit to the rheumy, and not so normal in that I am bruised from the fall last night.
In the positive, my daughter took me to the doctor so I had fun with the grands during the trip up and afterwards we went to wally world to pick up a few things. Great times!
My son is coming over this evening to see us before he leaves for Vegas at 6 tomorrow morning. He and Stacey are taking little missy to visit her other grandma. She is going to have a full week of spoiling in store for her... how cool is that?
Hubs and I are hoping ot be at the campground by Thursday to open the trailer and get things in gear for the season! I call it my happy place and it is.
On the down side, the lupus is still behaving badly. My fingers and feet hurt so bad today and I do not know why. I did find out my IgA is elevated as well as monocytes. My last urines had 1+ protein and wbc's present. All indicative of lupus activity. So, now I am glad to go to my happy place so I can relax and hopefully destress and get this body back in line again.
Hope everyone is well today and I send gentle hugs to one and all.
On the plus side, he told me to call my neurologist to discuss my dosage of the neurontin. The reason I even discussed it with him is that when I got into bed last night, I fell out again. I fell onto the floor next to the bed. Normally, there is nothing on the floor. However, since we are getting ready to go to the campground, I have boxes stacked and so when I fell, I fell into boxes from my shoulders down. I hit my right leg on a box and it caused a leg cramp on the upper right leg as I was laying on top of these boxes. Poor hubs, not only did I wake him up when I fell, now I was screeching because I have this leg cramp! I was trying to stretch my leg out up into the air and hubs was trying to get me up off the floor. It was a comedy of errors.
So, in retrospect, today was a normal visit to the rheumy, and not so normal in that I am bruised from the fall last night.
In the positive, my daughter took me to the doctor so I had fun with the grands during the trip up and afterwards we went to wally world to pick up a few things. Great times!
My son is coming over this evening to see us before he leaves for Vegas at 6 tomorrow morning. He and Stacey are taking little missy to visit her other grandma. She is going to have a full week of spoiling in store for her... how cool is that?
Hubs and I are hoping ot be at the campground by Thursday to open the trailer and get things in gear for the season! I call it my happy place and it is.
On the down side, the lupus is still behaving badly. My fingers and feet hurt so bad today and I do not know why. I did find out my IgA is elevated as well as monocytes. My last urines had 1+ protein and wbc's present. All indicative of lupus activity. So, now I am glad to go to my happy place so I can relax and hopefully destress and get this body back in line again.
Hope everyone is well today and I send gentle hugs to one and all.
Sunday, March 28, 2010
Letter to Normal People
Letter to normal people
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
Pain pain and more pain
Ok, I was put on neurontin to help with pain in my feet and hands. The first dosage is one capsule every night for a week. It made me so sleepy that it was hard to adjust to it. That being said, the pain has subsided some but not all the way. I think it would help if it were to finally get warmer and quit snowing/raining/cool weather. Unfortunately it is not helping me at all.
Now, my hands have been hurting pretty badly. It is my hope that this week, when I start the two doses of neurontin, it will begin to alleviate the pain more. I tell you, with all I have been doing lately, I am paying the price.
We will begin camping on the first of April so hopefully, once I am at "my happy place" things will improve. I need to minimize the stress and relax so my body can improve.
This is kind of post that really rambles and for that I am sorry. I truly do not know who all reads this. It is somewhat disjointed in the randomness of the thoughts but I am having issues with this as well.
Thanks for all the well wishes!
Now, my hands have been hurting pretty badly. It is my hope that this week, when I start the two doses of neurontin, it will begin to alleviate the pain more. I tell you, with all I have been doing lately, I am paying the price.
We will begin camping on the first of April so hopefully, once I am at "my happy place" things will improve. I need to minimize the stress and relax so my body can improve.
This is kind of post that really rambles and for that I am sorry. I truly do not know who all reads this. It is somewhat disjointed in the randomness of the thoughts but I am having issues with this as well.
Thanks for all the well wishes!
Rules of engagement
Welcome to you all...
I have been quiet since moving my blog over here, but I hope that whomever reads this will be accepting of the fact that when someone has a chronic illness, they need a place to vent their feelings and frustrations, free of guilt and judgment. So, in the interest of setting the groundowrk for this blog, please note that there are a few guidleines...
1. No judgment zone
2. No guilt zone
3. No drama zone
4. Loving comments gladly accepted
5. Fellow folks with chronic diseases welcome to vent too.
Thanks for all the love sent my way in the process of miving this from facebook.
Jen
I have been quiet since moving my blog over here, but I hope that whomever reads this will be accepting of the fact that when someone has a chronic illness, they need a place to vent their feelings and frustrations, free of guilt and judgment. So, in the interest of setting the groundowrk for this blog, please note that there are a few guidleines...
1. No judgment zone
2. No guilt zone
3. No drama zone
4. Loving comments gladly accepted
5. Fellow folks with chronic diseases welcome to vent too.
Thanks for all the love sent my way in the process of miving this from facebook.
Jen
Thursday, March 18, 2010
Welcome!
I just wnated to say welcome to all my friends who are coming over from facebook! I think this will suit my needs better anyway, since many people are offended by the chronic complaints of a chronically ill person.
In this forum, I can say what I want and do not have to sugar coat it or try to spin it in a more friendly way. So, in an attempt to be honest about the daily struggles of dealing with a chronic disease like lupus, I am hoping to help all of us to be able to vent freely and feel accepted.
Thanks for all your support and loving acceptance!
Jen
In this forum, I can say what I want and do not have to sugar coat it or try to spin it in a more friendly way. So, in an attempt to be honest about the daily struggles of dealing with a chronic disease like lupus, I am hoping to help all of us to be able to vent freely and feel accepted.
Thanks for all your support and loving acceptance!
Jen
Letter to normal people
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
Letter to “Normals”
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
-Please understand the difference between “happy” and “healthy” .When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
-Similarly, please understand that many of my symptoms aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only won’t help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.
-Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on.... it applies to everything. That’s what LUPUS does to you.
-Please understand that LUPUS is variable. It’s quite possible (for me, its common) that one day I am able to go to work, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying “But you did it before!” if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.
-Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct....if I was capable of doing these things , don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, “You just need to push yourself more, exercise harder...” Obviously LUPUS deals directly with the immune system, and because our immune systems don’t work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.
-If you want to suggest a cure to me, don’t .It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we’d know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick…
I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you’re my link to the outside world...if you don’t come to visit me then I might not get to you . …and, as much as it’s possible, I need you to understand me.
Please understand me.
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