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Life With Lupus

What Has Made Living Your Life with Lupus Easier or Better?


#21

Thankyou for the name of the book by Ruth Rendall that was a good find for you, hope you enjoy reading it, take care, bye for now, love and hugs Astrid40xoxo


#22

Lupus was a butterfly that flew into my house on a particularly velvet twilight. Lupus said, "Slow down, slow down, s l o w d o w n." I was so busy building myself, consolidated thought by consolidated thought; I fought tooth and nail to be strong and beautiful and kind and knowledgeable. I was my own Savior.

Lupus, landed lightly across my face and stained me with the mark of one blessed to suffer the lesser evil; I fell down step after step, down down down

I can't breathe

I can't bend

I can't walk

I can't understand

how a person (like me) who tries so hard to be good

to do everything right, to be cheerful and bright

could be cursed with this

plight:

these bricks crumbling clay bricks

Myself: Babel,

this shell, this self: dust.

What is left after a fall like that? Faith.

Because I was forced to lie flat and stare up up up and to hold on, to hope,

to know, finally that the One

Who Knows more than eye

Is calling me from ash to be more

by being less than the image conjured in the looking glass.

Now nothing sounds like this: like freedom: http://www.youtube.com/watch?v=FKtBpuLrI2s


#23

I am still awaiting my "official" diagnosis and learning about what works and what doesn't so this post is great! A few things that work for me:

-Fleece. I get so cold these days and fleece is soft against my skin and keeps me warm.

-Nap time or quiet time. Even if you can't nap to rest up, at least let yourself have a little mental zone-out so you can handle the rest of the day.

-Do something nice for yourself... make yourself a warm bath to soothe your joints. I just painted my nails with glitter, glitter can make anyone smile. I have always been one to put others before me, but since I've been symptomatic and in pain, I've learned to make sure I take care of myself and treat myself right too.

-The right doctor. Find a doctor that you mesh with, one that will take the time to talk to you and work with you, one that is concerned for his/her patients.


#24

Hi Janice, what a beautiful poem you have written for everyone to read, how lovely the way it is put into words. thankyou for sharing this with us, love and hugs Astrid40xoxo

janice said:

Lupus was a butterfly that flew into my house on a particularly velvet twilight. Lupus said, "Slow down, slow down, s l o w d o w n." I was so busy building myself, consolidated thought by consolidated thought; I fought tooth and nail to be strong and beautiful and kind and knowledgeable. I was my own Savior.

Lupus, landed lightly across my face and stained me with the mark of one blessed to suffer the lesser evil; I fell down step after step, down down down

I can't breathe

I can't bend

I can't walk

I can't understand

how a person (like me) who tries so hard to be good

to do everything right, to be cheerful and bright

could be cursed with this

plight:

these bricks crumbling clay bricks

Myself: Babel,

this shell, this self: dust.

What is left after a fall like that? Faith.

Because I was forced to lie flat and stare up up up and to hold on, to hope,

to know, finally that the One

Who Knows more than eye

Is calling me from ash to be more

by being less than the image conjured in the looking glass.

Now nothing sounds like this: like freedom: http://www.youtube.com/watch?v=FKtBpuLrI2s


#25

Hi Ann A., i understand how you feel, as i was diagnosed about twelve years back and they said to me id be around for about 15-16 years and that would be it, because of the organ involvement i have. But science has come along way, even from back then. Its amazing they keep bringing new things to help people. I was told not to eat anything with MSG in it, as this is supposed to make Lupus worse. If anyone is wondering what MSG is, its Mono Sodium Glutomate, its a preservative and colouring as far as i knew, its in a alot of package meals and ready made mash powders and the chinese use it alot. I have cut it out and it has helped me. Even my local chinese have stopped putting it in anything i have from them. They once said to me about me not buying my chinese anymore once a month say, and i told him why and now we are like friends and says he can cook it any way i would like. I dont think i have had a chinese for ages lately. And things like coke cola, i used to be addicted to this. I think it started with when i used to go to friends they never had any cold drinks other than coke cola and thats what got me started. As when i was younger all i used to drink was plain water, i am not keen on hot drinks. I occasionally have a cup of tea but not very often. Now i have managed to give up the coke cola and other fizzy drinks, it has made a real difference. It was hard i will admit. If you look up coke cola, its amazing how much rubbish is in it, and in other fizzy drinks. So i thought this cant be helping, and had to treat it like i was giving it up, like i would be taking a certain medicine to make me feel better. Also i dont think that chocolate is that good either, but its like they say everything in moderation. I have never eaten alot of chocolate anyway, so i am lucky in that sense, and i dont eat alot of salt. I never add salt to anything. Its not easy cutting out things that we enjoy though. We do have to make the most of each day though, no matter what life throws at us. One of the things i hope to be able to do is to be well enough to have at least a short break somewhere, just for a change of scenery. I havent been able to get away for ten years since i was diagnosed, as something has always happened healthwise to stop me. I believe reading also helps as it makes us think of something else, thats only if we are not in pain to the extent where we cant concentrate on anything, but its worth a try. Anyway i wont go on anymore, so bye for now, love Astrid40xoxo

Ann A. said:


Sounds like you are off to a GREAT start. When I was first diagnosed 45 years ago, they handed out the diagnosis like a death sentence. Told me that I would probably be dead in 10 years. Now that I have lived to be 65, I wish that I had learned to take care of myself sooner. I would have paid more attention to my nutrition. I would have learned better ways to handle stress. I would have listened when the physician said that exercise would help (when I was young I didn't know that there were so many types of low impact exercise that anyone could do - now, I actually did Qigong in my hospital bed the day after my spine surgery. Some people with lupus experience symptoms that are so severe that their lives are completely devastated. It does not happen to everyone. Live long and prosper.
Ballerina8876 said:

I am still awaiting my "official" diagnosis and learning about what works and what doesn't so this post is great! A few things that work for me:

-Fleece. I get so cold these days and fleece is soft against my skin and keeps me warm.

-Nap time or quiet time. Even if you can't nap to rest up, at least let yourself have a little mental zone-out so you can handle the rest of the day.

-Do something nice for yourself... make yourself a warm bath to soothe your joints. I just painted my nails with glitter, glitter can make anyone smile. I have always been one to put others before me, but since I've been symptomatic and in pain, I've learned to make sure I take care of myself and treat myself right too.

-The right doctor. Find a doctor that you mesh with, one that will take the time to talk to you and work with you, one that is concerned for his/her patients.


#26

I have to give some credit to my dad. He has been living with lupus for almost 20 years now and I have learned a lot just from being around him and seeing him go through so much. I'm curious though, what is Qigong? I've had to change my exercise routine due to joint pain (I danced for 14 years and now having to cut back is rough) so I've been looking into more low-impact activities I can do.

Ann A. said:


Sounds like you are off to a GREAT start. When I was first diagnosed 45 years ago, they handed out the diagnosis like a death sentence. Told me that I would probably be dead in 10 years. Now that I have lived to be 65, I wish that I had learned to take care of myself sooner. I would have paid more attention to my nutrition. I would have learned better ways to handle stress. I would have listened when the physician said that exercise would help (when I was young I didn't know that there were so many types of low impact exercise that anyone could do - now, I actually did Qigong in my hospital bed the day after my spine surgery. Some people with lupus experience symptoms that are so severe that their lives are completely devastated. It does not happen to everyone. Live long and prosper.
Ballerina8876 said:

I am still awaiting my "official" diagnosis and learning about what works and what doesn't so this post is great! A few things that work for me:

-Fleece. I get so cold these days and fleece is soft against my skin and keeps me warm.

-Nap time or quiet time. Even if you can't nap to rest up, at least let yourself have a little mental zone-out so you can handle the rest of the day.

-Do something nice for yourself... make yourself a warm bath to soothe your joints. I just painted my nails with glitter, glitter can make anyone smile. I have always been one to put others before me, but since I've been symptomatic and in pain, I've learned to make sure I take care of myself and treat myself right too.

-The right doctor. Find a doctor that you mesh with, one that will take the time to talk to you and work with you, one that is concerned for his/her patients.


#27

Hi Ballerina8876, goodness thats amazing that you poor dad has had Lupus that long. Plus its alot rarer than men than it is in women, although i did meet a few men when there used to be a Lupus Support Group run at our local hospital by Lupus sufferers. It closed because they could no longer have the conference room to have the meetings in. My husband has been thinking of getting in touch with one of the ladies that ran it before and suggesting a new venue. As everyone with Lupus needs support. It helps to have someone in your family who truely understands what you are going through, but at the same time its not easy watching him suffer as well as coping with having Lupus yourself. I think there is alot to do with this disease being hereditory now. I remember years back when the Lupus society were getting tests done with family members, my mother chose not to have it, as she said she would rather not know if it was in the family, which was a shame as it goes towards knowing how the disease works. I had to accept her decision, although i wasnt happy about it. So i expect now that they have proved that Lupus can be hereditory. Well dont to you and your Dad keeping fighting this long and keep going keeping strong, take care, look after yourselves, love and hug Astrid40xoxo

astrid40 said:

Hi Ann A., i understand how you feel, as i was diagnosed about twelve years back and they said to me id be around for about 15-16 years and that would be it, because of the organ involvement i have. But science has come along way, even from back then. Its amazing they keep bringing new things to help people. I was told not to eat anything with MSG in it, as this is supposed to make Lupus worse. If anyone is wondering what MSG is, its Mono Sodium Glutomate, its a preservative and colouring as far as i knew, its in a alot of package meals and ready made mash powders and the chinese use it alot. I have cut it out and it has helped me. Even my local chinese have stopped putting it in anything i have from them. They once said to me about me not buying my chinese anymore once a month say, and i told him why and now we are like friends and says he can cook it any way i would like. I dont think i have had a chinese for ages lately. And things like coke cola, i used to be addicted to this. I think it started with when i used to go to friends they never had any cold drinks other than coke cola and thats what got me started. As when i was younger all i used to drink was plain water, i am not keen on hot drinks. I occasionally have a cup of tea but not very often. Now i have managed to give up the coke cola and other fizzy drinks, it has made a real difference. It was hard i will admit. If you look up coke cola, its amazing how much rubbish is in it, and in other fizzy drinks. So i thought this cant be helping, and had to treat it like i was giving it up, like i would be taking a certain medicine to make me feel better. Also i dont think that chocolate is that good either, but its like they say everything in moderation. I have never eaten alot of chocolate anyway, so i am lucky in that sense, and i dont eat alot of salt. I never add salt to anything. Its not easy cutting out things that we enjoy though. We do have to make the most of each day though, no matter what life throws at us. One of the things i hope to be able to do is to be well enough to have at least a short break somewhere, just for a change of scenery. I havent been able to get away for ten years since i was diagnosed, as something has always happened healthwise to stop me. I believe reading also helps as it makes us think of something else, thats only if we are not in pain to the extent where we cant concentrate on anything, but its worth a try. Anyway i wont go on anymore, so bye for now, love Astrid40xoxo

Ann A. said:


Sounds like you are off to a GREAT start. When I was first diagnosed 45 years ago, they handed out the diagnosis like a death sentence. Told me that I would probably be dead in 10 years. Now that I have lived to be 65, I wish that I had learned to take care of myself sooner. I would have paid more attention to my nutrition. I would have learned better ways to handle stress. I would have listened when the physician said that exercise would help (when I was young I didn't know that there were so many types of low impact exercise that anyone could do - now, I actually did Qigong in my hospital bed the day after my spine surgery. Some people with lupus experience symptoms that are so severe that their lives are completely devastated. It does not happen to everyone. Live long and prosper.
Ballerina8876 said:

I am still awaiting my "official" diagnosis and learning about what works and what doesn't so this post is great! A few things that work for me:

-Fleece. I get so cold these days and fleece is soft against my skin and keeps me warm.

-Nap time or quiet time. Even if you can't nap to rest up, at least let yourself have a little mental zone-out so you can handle the rest of the day.

-Do something nice for yourself... make yourself a warm bath to soothe your joints. I just painted my nails with glitter, glitter can make anyone smile. I have always been one to put others before me, but since I've been symptomatic and in pain, I've learned to make sure I take care of myself and treat myself right too.

-The right doctor. Find a doctor that you mesh with, one that will take the time to talk to you and work with you, one that is concerned for his/her patients.


#28


Hi Ann A., this sounds interesting about the Gigong, i shall make a note of this, they do say that chinese medicines are one of the best things to help. The things that chinese have been doing and medicines they have used go back hundreds and thousands of years, so they are probably one of the best people to ask about these things. I did visit a chinese herbalist and he wrote down the name of some tablets that might help me. I took the name to the doctor a few weeks back and he said, he didnt think they would do me any harm, so it might be worth a try, if i remember what they are called i will let people know so they can ask whether they would help them. I think they were going to cost around £32 a months supply, if depends on what benefits and if it was worth it, if it helped then i think i would make sure i got the money together come hell or high water eh? hehe, anyway bye for now, love and hugs Astrid40xoxo
Ann A. said:

Good for you and your Dad.


I was introduced to Gigong through a book called The Healer Within: Using Traditional Chinese Techniques to Release Your Body's Own Medicine written by Dr. Roger Jahnke. In this book he offers some very basic Qigong movements that can be done when you are confined to the bed, when you can sit up in a chair, and then when you can stand. This book lives in my nightstand and goes to the hospital with me. I also have some tapes that I use - because I have not been able to find a class that meets at a time that I can attend.

http://www.feeltheqi.com/Dr_Jahnke/

Tai Chi is more widely known that Qigong and classes are easier to find. Qi is another spelling of Chi.


Ballerina8876 said:

I have to give some credit to my dad. He has been living with lupus for almost 20 years now and I have learned a lot just from being around him and seeing him go through so much. I'm curious though, what is Qigong? I've had to change my exercise routine due to joint pain (I danced for 14 years and now having to cut back is rough) so I've been looking into more low-impact activities I can do.


#29

The craziest part about my dad's lupus.... he had a brother who also had lupus. His case was more severe and passed away when he was 21, but for my grandmother to have three kids and only the two boys to have lupus is bizarre.

Thanks for the link on Qigong.

Has anyone here ever tried acupuncture to help with headaches or anything like that?


#30

Hi Ballerina8876, I hope you dont mind me saying this, but my goodness your family have been through the mill with Lupus havent they? It must of been so sad for the family when you dad's brother passed away, and then for you Dad to have Lupus as well, your grandmother musy of been worried sick about him. I have a history of cancer in my family, my dads brother died early, then my dad, and a lot of aunties have also died of cancer, but not Lupus as far as i know. My mum didnt want to do the test to see if it is hereditory in out family, she said she would rather not know. My mother sadly hates anything to do with meds and was always going on at me, saying did i need to take all the meds i have to take, i told her then if i didnt i wouldnt be here at the moment. I have Lupus quite severly, it is attacking almost every organ in my body, i have brain involvement which gives me epilepsy and forgetfulness. I also have the Antiphospholipid Syndrome, the clotting thing, i have had a stroke and a heart attack a while back, i also have chronic anaemia where i lost 7 pints of blood earlier this year and nearly died. I also get prone to pneumonia and have had it five time this year now if you count when this pneumonia started at the end of last year. with the new year i am hoping that it will be better this year. I also have malabsorption where i dont absorb any vitamens, minerals and nutrients from when i eat. I always have a high inflammation rate, i have also got fibrosis of the lungs, so find it hard to breathe at times. I have sleep apnoea too. I also have Fibromyalgia and Arthristis and Necrosis in my left leg. I had never ever heard of Necrosis before, but when i came on here i spoke to someone else who has it alot worse that i do, and in both legs and ankles, i really feel for them. Thats another reason why this site is so good, LWL allows us to meet others who understand what we go through each day. Thankyou for sharing about your dad and dad's brother having Lupus, as like i have said before its more rare in men isnt it? They say its more afro caribean people get it rather that european people, but i have met lots of european people who have Lupus. I dont think that Lupus has any real criteria of person it decides to take hold of. Lupus can be so varied and different in each and every person, no two people have exactly the same with Lupus, its a dreadful disease and we must hope and pray that one day they will find a cure for Lupus for good, and maybe a vaccination that stops people from getting it if they have a family history of it. You were saying about accupuncture, i have had accupuncture with my doctor, he is a trained accupuncturist, and i have not just had it for headaches but for other pain aswell, some in my hands and legs, and it has helped a little bit, any help is better than none though. I have also used a Tens Machine at one time, which does help, again only to a certain extent. It depends on how bad the pain is really, its good for not too severe pain, but everyone's pain levels are different, some people's body's can take more than other's, this is no reflect on the person's inner strength its just the way we are made, and it cant be helped that some people can tolerate more pain that others. Its so lovely to have some great support from others on LWL, as this helps keep us strong through the really tough times, anyway take care, bye for now, love and hugs Astrid40xoxo


#31

Hi Ballerina 8876, i have just noticed your cute little dog, how lovely. I bet he/she is a great comfort to you, and keeps you smiling when times are tough. I have a little Yorkshire Terrier who knows exactly how i feel from day to day. He is my rock, as is my husband when i really need him to be there for me, anyway bye for now, love Astrid40xoxo

Ballerina8876 said:

The craziest part about my dad's lupus.... he had a brother who also had lupus. His case was more severe and passed away when he was 21, but for my grandmother to have three kids and only the two boys to have lupus is bizarre.

Thanks for the link on Qigong.

Has anyone here ever tried acupuncture to help with headaches or anything like that?


#32

Wow Astrid, I'm sorry to hear that you have so many conditions going on at once. I'm still waiting for my rheumatologist appointment to see just how much is going on and what other antibodies I have. Nervous system involvement is suspected since I have headaches a lot and I've been forgetful a lot lately and my leg likes to go numb.

A book I was reading said that only 10% of lupus patients are men. It also said that "male fetuses with a lupus gene are more likely not to be born, which may explain why there are so few men with SLE." It didn't go into details about why this may be, but I thought it was pretty interesting. The book is called The Lupus Book by Daniel J. Wallace. It was pretty decent overview of how lupus works and affects the different body systems and the whole medication ordeal and psychological impacts of having a chronic illness, but it could get a little technical and scientific at times. What can I say, I"m a science nerd.

My husband was actually the one who brought up the idea of acupuncture the other night. They even have acupuncturists for dogs now! I might talk to my rheumy about it when I go. So far nothing has been able to help my headaches or my leg numbness.

I'm so glad that after a 50 year hiatus researchers found that new drug, Benlysta, to help us. I just hope the developments in the research and medical fields continue and we don't have to go through another 50 year period before something else is discovered. My rheumy's paperwork actually has a box to check if you are willing to let researchers look at your chart and send you questionnaires and stuff for research.

And yes, my little fall of fluff has helped me tremendously. She knows when I'm having bad days and will just cuddle up next to me and every now and then her little face will pop up as if she's checking on me. She does funny things with her toys too that get me laughing too. I don't know what I'd do without her. Pets can be such a wonderful asset.


#33

Hi astrid40, Happy new year to you also!!!! Sorry it has taken me so long to respond - i've bed in the bed a couple of days , trying to get over the holidays stress of people and get back to myself ... LOL hope that you are feeling better now also ?!!! Well in thinking about how this site has really helped me also , has REALLY BEEN A BLESSING for me ( Emotionally and Physcailly ) , just to know really that am not alone with this situation of LUPUS . Well talk with you later .... Get yourself together as much as possible and feel better talk with you soon ... Beverly L.

astrid40 said:

Hi Beverly L, i totally agree with what you said. I too felt like killing myself at times with the amount of pain i was in and also what didnt help was that the first doctor i went to about the symptoms more or less dismissed what i had as being psychosomatic, and never really bothered to even examine me. So when i had to move, i at least got a decent doctor who knew almost immediately what he thought was wrong with me. Obviously had to wait for the ANA tests and the consultant tests to reveal what was happening, it takes a good few months to confirm it all, even though they know already what it is, they just have to be sure as there are so many auto-immune diseases with the same symtoms. And being put on the steroids when i first chatted with the new doctor was a great help, it dampened everything down abit, and the pain got more bearable. I dont like taking the steroids as they have so many side effects, but when needs must eh? I have had to what i call delete people from my life, i will be pleasant if i bump into them, but anyone who i used to know who was negative towards me or spoke negatively about everything i had to stop seeing them, as it was dragging me down. I did feel guilty not seeing certain people anymore, but then if i didnt i would of gone down and under so it was for my health's sake. When we are in this position we have to look after ourselves, even if it means being tough with ourselves. I am thankful for all the lovely people i have met on the LWL site, it has really lifted my mood so much, just to know there are people who understand what i am going through and who have been there for me during tough times like with the pneumonia i have at the moment which is wiping me out. So Happy New Year to those i havent said it to, and thankyou to everyone for the chats and making me feel better during the bad times. Love and hugs Astrid40xoxox


#34

Yes everything that you mentioned is what is truth , Find TIME FOR YOURSEF and ENJOY IT !!! Exspecially that mental zone out time .. It will to make it through the rest of the day .... Beverly L.

Ballerina8876 said:

I am still awaiting my "official" diagnosis and learning about what works and what doesn't so this post is great! A few things that work for me:

-Fleece. I get so cold these days and fleece is soft against my skin and keeps me warm.

-Nap time or quiet time. Even if you can't nap to rest up, at least let yourself have a little mental zone-out so you can handle the rest of the day.

-Do something nice for yourself... make yourself a warm bath to soothe your joints. I just painted my nails with glitter, glitter can make anyone smile. I have always been one to put others before me, but since I've been symptomatic and in pain, I've learned to make sure I take care of myself and treat myself right too.

-The right doctor. Find a doctor that you mesh with, one that will take the time to talk to you and work with you, one that is concerned for his/her patients.


#35

Hi Beverly, Thankyou for your reply, dont worry about being late getting back to me, i totally understand where you are coming from, its nice to see people but its also lovely when they go home, and you get the place back to yourself and feel as though you can relax properly for a change. You need a few days to recover too. If i do anything one day, i always have a few days in bed after. I do find it frustrating though, as i would love to be able to plan things abit better. I am feeling a little better, but last night was one of those nights where i just couldnt sleep through pain, so i decided i would read to take my mind off it, it ended up i was up all night, and so i ended up reading half of my book, and didnt get off to sleep until around 7am this morning, so i spent alot of time sleeping before i got up to go to the shops early evening to get a couple of basic bits. I agree with you that this LWL site is briliant and to be able to be honest how you feel for once is lovely and to be understood is brilliant, sometimes when i say things to people i know, they look at me as though i am an alien and how could i have all those things going on inside of me and dont believe the red cheeks is a rash, and insist its not what i say, its because i am healthy they always say, i just think why on earth do i bother sometimes. I usually dont now, its only when someone insists i explain what Lupus is. Then when i do they dont believe it, it is frustrating isnt it? So its lovely to come on here and chat with others who understand what i am talking about. Anyway i will go now, but take care, look after yourself, love and hugs Astrid40xoxo

Beverly L. said:

Hi astrid40, Happy new year to you also!!!! Sorry it has taken me so long to respond - i've bed in the bed a couple of days , trying to get over the holidays stress of people and get back to myself ... LOL hope that you are feeling better now also ?!!! Well in thinking about how this site has really helped me also , has REALLY BEEN A BLESSING for me ( Emotionally and Physcailly ) , just to know really that am not alone with this situation of LUPUS . Well talk with you later .... Get yourself together as much as possible and feel better talk with you soon ... Beverly L.

astrid40 said:

Hi Beverly L, i totally agree with what you said. I too felt like killing myself at times with the amount of pain i was in and also what didnt help was that the first doctor i went to about the symptoms more or less dismissed what i had as being psychosomatic, and never really bothered to even examine me. So when i had to move, i at least got a decent doctor who knew almost immediately what he thought was wrong with me. Obviously had to wait for the ANA tests and the consultant tests to reveal what was happening, it takes a good few months to confirm it all, even though they know already what it is, they just have to be sure as there are so many auto-immune diseases with the same symtoms. And being put on the steroids when i first chatted with the new doctor was a great help, it dampened everything down abit, and the pain got more bearable. I dont like taking the steroids as they have so many side effects, but when needs must eh? I have had to what i call delete people from my life, i will be pleasant if i bump into them, but anyone who i used to know who was negative towards me or spoke negatively about everything i had to stop seeing them, as it was dragging me down. I did feel guilty not seeing certain people anymore, but then if i didnt i would of gone down and under so it was for my health's sake. When we are in this position we have to look after ourselves, even if it means being tough with ourselves. I am thankful for all the lovely people i have met on the LWL site, it has really lifted my mood so much, just to know there are people who understand what i am going through and who have been there for me during tough times like with the pneumonia i have at the moment which is wiping me out. So Happy New Year to those i havent said it to, and thankyou to everyone for the chats and making me feel better during the bad times. Love and hugs Astrid40xoxox


#36

Hi Beverly, yes its true we all need our own personal time and space to enjoy something nice like reading, or whatever hobbie someone has, everyone does. But even more so when you have Lupus, its a kind of destresser of a different type. Even if we lay there thinking of nothing and listening to music, as long as we are relaxing. Anyway bye for now, love and hugs Astrid40xoxo

Beverly L. said:

Yes everything that you mentioned is what is truth , Find TIME FOR YOURSEF and ENJOY IT !!! Exspecially that mental zone out time .. It will to make it through the rest of the day .... Beverly L.

Ballerina8876 said:

I am still awaiting my "official" diagnosis and learning about what works and what doesn't so this post is great! A few things that work for me:

-Fleece. I get so cold these days and fleece is soft against my skin and keeps me warm.

-Nap time or quiet time. Even if you can't nap to rest up, at least let yourself have a little mental zone-out so you can handle the rest of the day.

-Do something nice for yourself... make yourself a warm bath to soothe your joints. I just painted my nails with glitter, glitter can make anyone smile. I have always been one to put others before me, but since I've been symptomatic and in pain, I've learned to make sure I take care of myself and treat myself right too.

-The right doctor. Find a doctor that you mesh with, one that will take the time to talk to you and work with you, one that is concerned for his/her patients.