I was a mover and shaker, never sitting still and working as a nurse. Lupus hit and I can't work anymore. I am tired most the time. After going to doctor or shopping it takes me three days to get over it. I try to do what is important and forget the rest. It is not a fun way to live, but you have to listen to your body. If you push too hard you end up really in bad shape. Good Luck. Hugs XOOOX
You are right our bodies do let us know, don't overdo because it will just cause more problems, you do have to choose what is more important at the time, hugs
I agree with you. If you want to do something, you will end up doing it, even if it exhausts you and puts you past your limit. Sometimes we have to do what we want instead of always listening to what our body wants (seems like a crazy concept but, it's what I do....). There have been days when I'm in terrible TERRIBLE jaw pain and have plans and still decide to fulfill those (I rarely bail) and I end up paying for it by being exhausted and needing to sleep my pain away until it's at a tolerable level again (laughing is EXHAUSTING for my jaw). I also get headaches/migraines from my jaw pain and those are the only times I really decide I have to cancel my plans for the day. As far as getting a job/going to school and stuff like that, I think everyone should TRY to do whatever they want. If it doesn't work, well now you know but, if we sit around and just wonder instead of doing, we really don't know our limits.
I just want to say thank u too for the lupus show update, I was wondering when the next one was going to be aired. Glory to you on this day, and I look forward to the next epidose samantha.
It'a amazing how "we" manage to accomplish everyday goals! That's the power of determination! When I'm not in a "flare" I juice which seems to give me a great boost. I too, have been trying to stump the exhaustion! When you figure it out, let me know :)
So good to see you. I am such a big fan. I worry often why I have such a up and down life. I graduated with a bachelor and master degree with lupus. My professors would send me home when I wanted to stay in class like everyone else. Yes you can do this. But remember...you do have lupus. I still miss out on so much right now because of lupus. No vacations, family reunions, church... I know things will get better for all of us because we are conquerors and fighters!!! I do get the family at times not understanding how we can run one minute and be on our backs the next. Recently...like a few hours ago my Mom said something that hurt me to my gutt. She does not understand all my meds and doctors appointments. Thing is I have had lupus most of my life ( was not diagnosed until recently ). My family especially my mom dad and brother do not believe anything is wrong with me at all. Some how it seems that if they believed this it might cause some type of personal issues. All I know is you just encouraged me. I encourage you. If you have to concentrate on school, do it. It will all pan out. Suggestion...even if you show a video of you studying. I wonder what kind of stuff you have to do to become a therapist. Look forward to seeing your new and upcoming video. Glad you are o.k. Well you know what I mean. Still unpacking myself from a move this time last year. Frustrated, but I can do it. Nobody can do it like I can. Only I know how I want my place to be. At peace, full of love and user friendly for myself. Take care. Praying for you. Oh, I do understand you.
Thank you for your lovely comment. I always watch out for your comments because you always have great advice/stories. Thank you for the encouragement! :)
I know exactly what you mean!!!! I'm over here running on empty and GOD I say!!!! But I don't have a choice because I have a 2 year old!!! He doesn't stop regardless how I'm feeling. I'm also married, going to school to get a Master's degree in Counseling!!! I have a 13 year old daughter and 9 year old step daughter!! I'm tired now typing, lol! You just have to pace yourself, and your right pick whats important and rest when your body tells you. I know its hard, but we have to. Glad to see your doing fine and thanks for the video.
Wow! You are doing a lot! For me having kids one day I know the sacrifice will be worth it but it is not easy to do! Thanks for the advice and sharing!
I think I know what you mean Sam. I think I know what you feel, too. When I was your age my autoimmunity hadn't been diagnosed. I felt exhausted easily - my older sisters constantly told my mom I was lazy but lucky for me I think my mom knew lazy from exhausted and gave me lots of breaks. I went to University and worked at my future job at the same time through a co-op program. I was up and on the run from 5:30 AM until 10:00 PM everyday. About once or twice per week I did something which kept me up late and Friday & Saturday I went out in the evenings, but I slept about 14 hours on Saturday and Sunday to recover. So yes, I think we can push ourselves to do anything we need or want to do, but we need more recovery time. So we can't push ourselves consistently because that stress we put on our bodies will also be stress put on our immune system and when it gets wound up, it makes antibodies which harm our bodies at the same time as it works to protect us. For most of us that means never living up to a healthy person's potential, but instead making compromises to achieve what is most important and struggling to accept that is OUR potential. Not always what we expect or hope for, but always the best we can do.
I understand feeling exhausted . Lately I've been feeling the same way .Even when you finish a simple task . I hate when my family make comparison about what your going to do when you live alone. Feel better!
A old friend of mine was just saying her Lupus is under control & I would love for you to talk with her and maybe you can share ideas. This basic body function she said helps with ALL ailments & diseases. It is a shame most people/doctors don't know this, I guess there is no money to be made if everyone was cured but my friend sure is better.
I know exactly how you feel. I am 38 and have two boys and work full time. I just started a japanese sword class which I love. I also am taking cooking classes. When I get tired I cant do it all. Lupus makes you choose. You have to listen to your body and slow down when it tells you. I laughed about the water because I always ask my boys to get me things and my husband once said I was lazy! I tell people my fatigue feels like I stayed up for two days straight . I actually hate the fatigue more then the pain with my lupus. That is pretty sad. If anyone has been able to find anything that helps with the fatigue please let me know.
Also forgot to say I have been spending a couple of months here and they're trying to get my film studio together. I wrote a long time ago about starting to make my films again. I had so much rearranging to do in my place. I'm sure it will be worth the wait once it is finished. I have been writing a lot of poetry and jotting down ideas for short films. So there is a spark in me to do something, sometimes.
Well my friend, I have missed you much. Are you doing well? Is school over and how did you do? i have been a little sick for a bit. humbling to me because it wasn't that long ago that i was treated very badly in the hospital. I hate living in the fear off my enemy LUPUS. I have been having a long time to think about about writing my stories, poems and movies. In the last two weeks I have written more than I have in a year. I am truly excited and a little scared. I do know for right now I have to stay focused. i have been sick for a long time in my life. The day I got the news that I would have and do have Lupus. Did not understand at first how this could have happen to me? Seems like so many things were falling right in place for me. I was getting paid to do presentations, speaking to hospital staff, emergency room operators even police and the D.E.A. Never believed that my dreams would come true. to reach people. To bring awareness. i find now that the life that i was blessed to be born into was extremely violent and abusive. That stuff which is what haunts me my my Lupus worse. I am fighting and writing. What helps you get through? STAY SAFE MY FRIEND
I was diagnosed with Lupus a few months ago (I think, time is lost on me) as well as fibromyalgia. That was years ago. And of course I have severe depression and anxiety. I hurt all the time even though I take heavy meds. I've been stuck in bed for months but I've been sick for over 6 years. I had to walk away from my career which really hurt. I have gained a ton of weight when I had my first mega Lupus flare. I can't shower. The worst thing about the Lupus is that I have sores on my scalp that weep and my hair is tangled into a matrix of knots. At first I had to cut all of my hair off because it was long and couldn't be saved. This is messing with me so much. It's growing back out but the sores are still there and it grew back gray!!! I need help. Do you or anyone else suffer from muscle and joint pain? Does anyone know what I'm talking about with my hair. My skin is severely dry as well with pop up rashes on lyrics arms and legs frequently. I'm sorry to babble on and I pray to God that I discourage anyone but I am hanging on by a thread. Thank you for sharing your experience.
Hello it's me. I just had a really good comment going. Then I touch something and the whole thing disappeared. Talk about frustration? Maybe I just needed to send this in a shorter way. I was wondering if it is hard for you to express when you'er having a hard day to people who are used to seeing you push your way through. There are so many things that I used to do that I really miss. At times my body is so tired. I had a couple of rough weeks. I took a lot of tests from a lot of new doctors and everything pointed to an old result. I am a big denial person. I know it affects me when my parents refuse to believe the fact that I have lupus and many other complications. Maybe this is just my perception because I'm feeling a little down. But my diagnosis of lupus and other immune disorders seem to really be getting in the way of a relationship with my parents. I really thought that my parents and I would become closer when I was diagnosed. This is not like having the flu. I feel better someday and I feel worse others. I have faith. But I also know that there is a strong possibility that I will always have to manage my lupus. I heard you just mentioned about being able to do just what you want to do. I think I just get discouraged when it takes me a long time to figure out how to do what it is I want to do. I live alone with a close friend, a friend like a sister. In fact I can't imagine having anyone closer to me then my sister. But I know it hurts her to see me in so much pain. I need to rearrange some of the things that I dreamed I would be doing at this particular time in my life. You know what you're right about doing things when they have to get done. Sure it's nice to have someone that's passing the refrigerator bring you something to drink. But when you are living alone and you need that drink of water you will get it whether it is immediately or later. I promise you will not dehydrate. I want to encourage that you can do this. You can do whatever you put your mind too. It just might not be done the same way you once imagined. But you can still get the job. Put your thinking cap on and pass those exams if you haven't already. Be encouraged.
![เปิดใจ “ต้นหอม ศกุนตลา” หลังโดนพาดพิงธุรกิจที่เคยทำ และผลกระทบทำถูกปลดฟ้าผ่า! | แฉ 24 ต.ค.67 [2/3]](http://i.ytimg.com/vi/vCi5OIqlxaE/mqdefault.jpg)
I was a mover and shaker, never sitting still and working as a nurse. Lupus hit and I can't work anymore. I am tired most the time. After going to doctor or shopping it takes me three days to get over it. I try to do what is important and forget the rest. It is not a fun way to live, but you have to listen to your body. If you push too hard you end up really in bad shape. Good Luck. Hugs XOOOX
You are right our bodies do let us know, don't overdo because it will just cause more problems, you do have to choose what is more important at the time, hugs
Yes, very true!
I agree with you. If you want to do something, you will end up doing it, even if it exhausts you and puts you past your limit. Sometimes we have to do what we want instead of always listening to what our body wants (seems like a crazy concept but, it's what I do....). There have been days when I'm in terrible TERRIBLE jaw pain and have plans and still decide to fulfill those (I rarely bail) and I end up paying for it by being exhausted and needing to sleep my pain away until it's at a tolerable level again (laughing is EXHAUSTING for my jaw). I also get headaches/migraines from my jaw pain and those are the only times I really decide I have to cancel my plans for the day. As far as getting a job/going to school and stuff like that, I think everyone should TRY to do whatever they want. If it doesn't work, well now you know but, if we sit around and just wonder instead of doing, we really don't know our limits.
I just want to say thank u too for the lupus show update, I was wondering when the next one was going to be aired. Glory to you on this day, and I look forward to the next epidose samantha.
It'a amazing how "we" manage to accomplish everyday goals! That's the power of determination! When I'm not in a "flare" I juice which seems to give me a great boost. I too, have been trying to stump the exhaustion! When you figure it out, let me know :)
So good to see you. I am such a big fan. I worry often why I have such a up and down life. I graduated with a bachelor and master degree with lupus. My professors would send me home when I wanted to stay in class like everyone else. Yes you can do this. But remember...you do have lupus. I still miss out on so much right now because of lupus. No vacations, family reunions, church... I know things will get better for all of us because we are conquerors and fighters!!! I do get the family at times not understanding how we can run one minute and be on our backs the next. Recently...like a few hours ago my Mom said something that hurt me to my gutt. She does not understand all my meds and doctors appointments. Thing is I have had lupus most of my life ( was not diagnosed until recently ). My family especially my mom dad and brother do not believe anything is wrong with me at all. Some how it seems that if they believed this it might cause some type of personal issues. All I know is you just encouraged me. I encourage you. If you have to concentrate on school, do it. It will all pan out. Suggestion...even if you show a video of you studying. I wonder what kind of stuff you have to do to become a therapist. Look forward to seeing your new and upcoming video. Glad you are o.k. Well you know what I mean. Still unpacking myself from a move this time last year. Frustrated, but I can do it. Nobody can do it like I can. Only I know how I want my place to be. At peace, full of love and user friendly for myself. Take care. Praying for you. Oh, I do understand you.
Thank you for your lovely comment. I always watch out for your comments because you always have great advice/stories. Thank you for the encouragement! :)
I know exactly what you mean!!!! I'm over here running on empty and GOD I say!!!! But I don't have a choice because I have a 2 year old!!! He doesn't stop regardless how I'm feeling. I'm also married, going to school to get a Master's degree in Counseling!!! I have a 13 year old daughter and 9 year old step daughter!! I'm tired now typing, lol! You just have to pace yourself, and your right pick whats important and rest when your body tells you. I know its hard, but we have to. Glad to see your doing fine and thanks for the video.
Wow! You are doing a lot! For me having kids one day I know the sacrifice will be worth it but it is not easy to do! Thanks for the advice and sharing!
I think I know what you mean Sam. I think I know what you feel, too. When I was your age my autoimmunity hadn't been diagnosed. I felt exhausted easily - my older sisters constantly told my mom I was lazy but lucky for me I think my mom knew lazy from exhausted and gave me lots of breaks.
I went to University and worked at my future job at the same time through a co-op program. I was up and on the run from 5:30 AM until 10:00 PM everyday. About once or twice per week I did something which kept me up late and Friday & Saturday I went out in the evenings, but I slept about 14 hours on Saturday and Sunday to recover.
So yes, I think we can push ourselves to do anything we need or want to do, but we need more recovery time. So we can't push ourselves consistently because that stress we put on our bodies will also be stress put on our immune system and when it gets wound up, it makes antibodies which harm our bodies at the same time as it works to protect us.
For most of us that means never living up to a healthy person's potential, but instead making compromises to achieve what is most important and struggling to accept that is OUR potential. Not always what we expect or hope for, but always the best we can do.
Yes, that recovery time is sooo important! That is something I think we call all agree on. It is hard for others to understand that concept as well.
I understand feeling exhausted . Lately I've been feeling the same way .Even when you finish a simple task . I hate when my family make comparison about what your going to do when you live alone.
Feel better!
A old friend of mine was just saying her Lupus is under control & I would love for you to talk with her and maybe you can share ideas. This basic body function she said helps with ALL ailments & diseases. It is a shame most people/doctors don't know this, I guess there is no money to be made if everyone was cured but my friend sure is better.
I know exactly how you feel. I am 38 and have two boys and work full time. I just started a japanese sword class which I love. I also am taking cooking classes. When I get tired I cant do it all. Lupus makes you choose. You have to listen to your body and slow down when it tells you. I laughed about the water because I always ask my boys to get me things and my husband once said I was lazy! I tell people my fatigue feels like I stayed up for two days straight . I actually hate the fatigue more then the pain with my lupus. That is pretty sad. If anyone has been able to find anything that helps with the fatigue please let me know.
Also forgot to say I have been spending a couple of months here and they're trying to get my film studio together. I wrote a long time ago about starting to make my films again. I had so much rearranging to do in my place. I'm sure it will be worth the wait once it is finished. I have been writing a lot of poetry and jotting down ideas for short films. So there is a spark in me to do something, sometimes.
Well my friend, I have missed you much. Are you doing well? Is school over and how did you do? i have been a little sick for a bit. humbling to me because it wasn't that long ago that i was treated very badly in the hospital. I hate living in the fear off my enemy LUPUS. I have been having a long time to think about about writing my stories, poems and movies. In the last two weeks I have written more than I have in a year. I am truly excited and a little scared. I do know for right now I have to stay focused. i have been sick for a long time in my life. The day I got the news that I would have and do have Lupus. Did not understand at first how this could have happen to me? Seems like so many things were falling right in place for me. I was getting paid to do presentations, speaking to hospital staff, emergency room operators even police and the D.E.A. Never believed that my dreams would come true. to reach people. To bring awareness. i find now that the life that i was blessed to be born into was extremely violent and abusive. That stuff which is what haunts me my my Lupus worse. I am fighting and writing. What helps you get through? STAY SAFE MY FRIEND
I was diagnosed with Lupus a few months ago (I think, time is lost on me) as well as fibromyalgia. That was years ago. And of course I have severe depression and anxiety. I hurt all the time even though I take heavy meds. I've been stuck in bed for months but I've been sick for over 6 years. I had to walk away from my career which really hurt. I have gained a ton of weight when I had my first mega Lupus flare. I can't shower. The worst thing about the Lupus is that I have sores on my scalp that weep and my hair is tangled into a matrix of knots. At first I had to cut all of my hair off because it was long and couldn't be saved. This is messing with me so much. It's growing back out but the sores are still there and it grew back gray!!! I need help. Do you or anyone else suffer from muscle and joint pain? Does anyone know what I'm talking about with my hair. My skin is severely dry as well with pop up rashes on lyrics arms and legs frequently. I'm sorry to babble on and I pray to God that I discourage anyone but I am hanging on by a thread. Thank you for sharing your experience.
This is awesome. Thank you so much. I appreciate it.
One last thing. Good night.
I just had a question for you Sam. I live in las vegas too and I seem to get worse during summer. Do you have that issue?
Do you ever have irregular heartbeats?
Hello it's me. I just had a really good comment going. Then I touch something and the whole thing disappeared. Talk about frustration? Maybe I just needed to send this in a shorter way. I was wondering if it is hard for you to express when you'er having a hard day to people who are used to seeing you push your way through. There are so many things that I used to do that I really miss. At times my body is so tired. I had a couple of rough weeks. I took a lot of tests from a lot of new doctors and everything pointed to an old result. I am a big denial person. I know it affects me when my parents refuse to believe the fact that I have lupus and many other complications. Maybe this is just my perception because I'm feeling a little down. But my diagnosis of lupus and other immune disorders seem to really be getting in the way of a relationship with my parents. I really thought that my parents and I would become closer when I was diagnosed. This is not like having the flu. I feel better someday and I feel worse others. I have faith. But I also know that there is a strong possibility that I will always have to manage my lupus. I heard you just mentioned about being able to do just what you want to do. I think I just get discouraged when it takes me a long time to figure out how to do what it is I want to do. I live alone with a close friend, a friend like a sister. In fact I can't imagine having anyone closer to me then my sister. But I know it hurts her to see me in so much pain. I need to rearrange some of the things that I dreamed I would be doing at this particular time in my life. You know what you're right about doing things when they have to get done. Sure it's nice to have someone that's passing the refrigerator bring you something to drink. But when you are living alone and you need that drink of water you will get it whether it is immediately or later. I promise you will not dehydrate. I want to encourage that you can do this. You can do whatever you put your mind too. It just might not be done the same way you once imagined. But you can still get the job. Put your thinking cap on and pass those exams if you haven't already. Be encouraged.
But lupus gets worse not better