Quantcast

Life With Lupus

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


#1

Since I have a miserable track record with New Year's resolutions, the only thing I've resolved to do in the new year is to spare myself any unneccessary disappointment and forego any more of them entirely this year. Instead, I'd rather use my increasingly sporadic and fleeting energy to focus on the things that can make living with lupus easier on me and the people in my life. I would love to hear from you with anything, no matter how small or seemingly insignificant, that has helped you or your loved ones either better cope with living with lupus or helps improve your mood or outlook on a regular basis. For instance, earlier this year, one member shared that she takes magnesium several times a day to boost her energy. So after my doctor assured me that it wouldn't hurt, I started taking it and have found that it actually does sustain my energy a bit when I already have a lttle to start with.

Other members here have had success with diet changes. As a Mini Chewy SweetTarts junkie (thanks to the generosity of my new best neighbor, 4-year-old Nikki), I'm not sure I'm ready to take that leap yet. However, as an avid reader, I have discovered that short story collections are a perfect distraction for when I'm in a miserable flare or otherwise feeling too cranky to focus on a good novel or normally interesting magazine article. I buy them used for very little on Amazon (sometimes for under $1.00) and make sure they're edited by writers I already like so there's a better chance of enjoying most of them. Even so, I occasionally start reading one that's too dark or depressing for my already dour mood, but the best thing about a collection is that there's usually 25-35 more to choose from, and I often find one that makes me laugh out loud, which always boosts my mood for a while. (Send me a message if you'd like a list of the best collections I've read lately.)

I've also found that music too can be either a great commiserator or an inspiration, depending on my mood and choice. So I figure there must be other ways of making life with lupus easier or more pleasant that I haven't yet discovered and I'm eager to know whatever does this for you or the people you love.

Speaking of inspirational music, I've included a link to one of the tunes I've recently added to my personal GetOffYourBloomin'Assets playlist. It was written by Bob Dylan and his version is really good too, but Etta James is the only one who belts it out with the kind of authority I need to push me from perching too long on the pitypot these days. Hope it moves you too. o|^_^|o music

Listen to the blues queen putting feeling to a well-known song from Bob Dylan

#2

A few things that I think have made my life a little easier/better…

A mouse for my new laptop at work (the trackpad was terrible on my arthritis)

Comfy shoes, like slip on Merrells

I got my front car windows tinted, so the sun isn’t always beaming in on me. Well worth $75.

Laughter / comedic relief – movies, short Youtube clips, etc.

Positive inspiration post-its, books & shower cards my mom bought me

Getting outside, walking, swimming

My doggies, my family, true friends

This might sound terrible, but I think getting the actual diagnosis (solid answer) & taking my husband to that JHU appointment has changed how he views me/my health. It’s real now, not just a figment of my imagination or me complaining.

The mental aspect: it’s easier to deal with a known than an unknown variable.

Talking with my cousin who also has Lupus.

Going to see specialists to get baseline data.

Our prescription drug company approved coverage for brand-name Plaquenil (generic made me itch into welts).

Oh, and we found a potential gestational carrier =)

Here's to more good days for us all! Cheers!!


#3

My skin gers very sencitive sometimes and I bought soft clothes so they dont scratch and hurt so bad.

I take vitamines that are recomendet for us ( a,b12,d3,e,iron)

I dont drink sodas because we are prone to kidney issues

I try to stay out of the sun!!!

SLEEP plenty.

I try to get out of bed even on bad days to keep depression from taking over.

I post my rants on here so I can get atleast a bit frustration out.

I go to church with Peter when ever I can.

I dont eat soy... they say its bad...

I dont take birthcontrol because they say its bad

I am quitting smoking

I told my friends not to ask me every time I limp or my face gets red if I am ok.... it goes on my nerves


#4

Pj…Love the song…one of my all time favorites! when I REALLY feel bad, I play some of Dylan’s really old music…and realize no one can stand to be as depressed as he was at the time he was singing them! Did not know about the magnesium boost…I use the SOBE drinks with vitamin B’s to help with my energy! Diet changes have been hard for me, too.

What really helps is doing something I love…sculpting in clay. I collaborate with a great sculptress who keeps me challenged and motivated. I leave much of the “house stuff” to whomever needs it done. Spouse and I decided we don’t live in a house, we live in a studio, so it never is very “proper”. I guess the First Lady could visit if she doesn’t mind jewelry supplies and tools, clay, knitting, and remote control cars all over the place!

I also try to stay very much in the moment…not think too much about the way things were…or what might be…which as a Type A personality is very hard…I try to make sure my hands and mind are not idle…I read, play solitaire, do crossword puzzles, anything to not think too much…sound ADHD…but, oh well! It helps me!


#5

Some great tips, Carey. I'm particularly impressed with all you've done so early in your diagnosis to accommodate your lupus. Window tinting is one idea that I'm going to follow-up on since driving around for more than a few minutes in the daytime simply exhausts me here in south Florida. Thanks! pax, pj

Carey said:

A few things that I think have made my life a little easier/better…

A mouse for my new laptop at work (the trackpad was terrible on my arthritis)

Comfy shoes, like slip on Merrells

I got my front car windows tinted, so the sun isn’t always beaming in on me. Well worth $75.

Laughter / comedic relief – movies, short Youtube clips, etc.

Positive inspiration post-its, books & shower cards my mom bought me

Getting outside, walking, swimming

My doggies, my family, true friends

This might sound terrible, but I think getting the actual diagnosis (solid answer) & taking my husband to that JHU appointment has changed how he views me/my health. It’s real now, not just a figment of my imagination or me complaining.

The mental aspect: it’s easier to deal with a known than an unknown variable.

Talking with my cousin who also has Lupus.

Going to see specialists to get baseline data.

Our prescription drug company approved coverage for brand-name Plaquenil (generic made me itch into welts).

Oh, and we found a potential gestational carrier =)

Here's to more good days for us all! Cheers!!


#6

Pj…another thing a friend shared that helps some days are the daily thoughts from bonesigharts.com. Subscribe and you can get some motivation some days.


#7

I'm so impressed by how much everything that's been shared so far, and didn't know about soda since I don't drink it much anyway, but it's good to know because I too have kidney problems. Wasn't aware of vitamins A or B12 either, although I've heard that B12 can also boost energy. I'll ask my rheumy about both since I already take a multivitamin, D3, calcium, magnesium, fish oil, and 1000 mg of folic acid to counteract the stomach problems that methotrexate can otherwise cause. Do you know why soy is bad for lupus? I love bean curd from my local Chinese restaurant, but will stop ordering it if there's a good reason to avoid it, aside from the copious amount of garlic in it, which another member's doctors advised her to avoid. I also get a lot of solace from prayer and church so I start my day with a half hour of quiet time to pray and meditate on a few affirmations to help me get through whatever I've got planned for the day. Thanks for your great input, Sunshine! pax & no pain, pj

sunshinespraypaint said:

My skin gers very sencitive sometimes and I bought soft clothes so they dont scratch and hurt so bad.

I take vitamines that are recomendet for us ( a,b12,d3,e,iron)

I dont drink sodas because we are prone to kidney issues

I try to stay out of the sun!!!

SLEEP plenty.

I try to get out of bed even on bad days to keep depression from taking over.

I post my rants on here so I can get atleast a bit frustration out.

I go to church with Peter when ever I can.

I dont eat soy... they say its bad...

I dont take birthcontrol because they say its bad

I am quitting smoking

I told my friends not to ask me every time I limp or my face gets red if I am ok.... it goes on my nerves


#8

They think that Lupus can be caused by a hormone imbalance. Soy contain ostrogan(spelling is prolly very bad) so thats what can be bad, but its not for everyone.. Like some websites say to sta away from cyenn pepper and I just had some chilly with loads of it in it and I didnt feel bad or anything. So like food restrictions I think just depends on the person and how it affects tier lupus. The vitamin A and E is for the skin and hair. Since lupus likes to mess with it. Vitamin A & E are fatt- soluble vitamins wich are stored in the liver unlike vitamins c and u have to watch overdosing on it.

PS. My spelling in english sucks I was borne and raised in Germany and have been here for 7 years now....



#9

Hi Pjarden, thankyou for this post. Its funny you should mention about short reads, i have a fair few of these i have purchased. I too have bought them from Amazon and other book stores as ebooks for my Sony ereader. I love the Sony ereader as my eye sight isnt great and i have to use glasses that sometimes dont work because i have pigmentation on the back of my eyes, so the ereader can increase the text size to XXL so then it is easier to read on bad days. There are quite a lot of quick read books you can find, i have some by Helen Dunmore, Lynda La PLante, Peter James, and more, those names are the ones that do thrillers. I also purchased a funny look at life book called Paranoia In The Laundrette which is only 45 pages long, its by Bruce Robinson. Its about this chap who goes to the laundrette and while he is there all sorts of things happen to him in that short period, it can be funny depending on how you look at it. Another one i have got is called The Boys Upstairs by Jane Lebak, about a priest who opens up his house and church to take in homeless children with a brother coming home from Iraq, thats quite a good one to read too. Also there is Cleanskin by Val McDermid for those who enjoy thrillers. And Freaks by Tess Gerritsen which is free for people with ereaders from Amazon and Kobo.com for those with other types of ereaders which take epub and pdf files. There is also another short read called Strangers on the 16.02 by Priya Basil, its a short read about a train journey and the people you see and meet, it will make you think differently about your train journeys in the future, its another good short read if you cant concentrate too long on a full size book. Like you have said Pjarden, the short reads are ideal if you are having a bad time with reading, as you dont feel as overwhelmed as you would with a full size novel or any book you would like to read normally. Magazines are also ideal as you dont even have to read those, you can just flick through to see if anything takes your interest. Even a short film can help to relax and fall off to sleep. If you have someone who is willing, also i find soaking my feet and having my feet pampered depending on if you are well enough to sit up for ten or so minutes. My husband sometimes brings in a warm face cloth when i am having one of my really hot moments, i am lucky to have him do that for me. I do find listening to music helps, it depends on your mood what you might choose at the time, i know it does with me, i can go from having something really soft sounding to abit more lively. I used to find a tens machine helped but now the pain is at that level it doesnt help anymore sadly. I think everyone is different with what they find helps, but i am sure most like listening to music. Anyway Pjarden thankyou for this, have a good evening, take care, look after yourself, bye for now, love and hugs Astrid40xoxoxo


#10

Hi Pjarden, thankyou for the link to Etta James, you cant beat abit of her music can you. Her voice is so powerful. My husband likes her music too. Its good when something inspires you to keep going and pushing yourself along whether you feel like it or not. Thanks everyone for the lovely words that you have all written for everyone to see, and the bible references. I am a catholic but havent been to church in a long time because i struggle to sit upright in the hard seats now, its so painful, i would come out worst than i went in. But i dont think you have to go to church to be able to pray, you can pray anywhere, i dont think the Lord minds, he is there for you anywhere. Its good to have faith, it keeps us going and to be good to others too. I wish more people would be kinder to others. And Carey, you are right too, Comfy shoes do make such a difference, the only problem is the cost of really comfy shoes, so i go into one of the comfy shoe shops as i call them, and buy myself a gift voucher here or there, until i have enough gift vouchers to get myself a new pair or go to the sales. I have looked in the sales this year but there isnt anything that is either my size or is right for me at the moment, i looked online for this, which is sometimes better than going in the shops where its all hot and uncomfortable. Talking of being hot, i find a cooling spray which is basically water compressed into a tin with a freezing agent, which helps when i am burning up with the flares i have, i havent ever had a remission period sadly, so i carry round one of these small tins like a deoderant size tin in my bag for the occasions when i am all hot in the face and whereever else, it really does help. Swimming also helps when i can get there, i am supposed to be getting some more help soon from the Social Services with getting out and about, so i am really looking forward to that. And carey you are so right when you say actually getting a diagnosis helped, it does as then you dont feel as though you are going crazy anymore, or like a total hypochondriac, finally having been told whats wrong and although it cant be cured, there are things that can help thankfully. Anyway i will end this now, or i will have such a long message, hehe, bye for now, love and hugs Astrid40xoxoxo


#11

Hi Pjarden, and everyone, i thought i would add a couple of other things that help, that is just taken for granted now whilst i am on here. Well of course talking to other people who are in the same situation has helped, I was so glad when i found this website and immediately felt as though others cared about what i am going through. It made me feel better mentally about myself. I didnt feel so useless knowing others were feeling the same way. Also having my little Yorkshire Terrier dog helps me, he doesnt judge me, and is always there for love and cuddles, and i am lucky that i have a husband who is there for the bad times. When i am in hospital, he comes up to see me bringing the ice i need for my drinks, as i have Sjorgrens Syndrome too, which makes me have to have extra cold drinks for me to feel the coldness and vice versa with the hot food, i can never really feel its hot enough, so he is there to make sure i have not overheated my food in the microwave which i have done so many times before, because i cant tell the difference. The really cold drinks help me to fee abit better. So we have bought an ice machine which helps with cold drinks and also to use for other things like when i have falls and need to bring the bruises out or swellings down by putting the ice in a container and wrapping it up so its just cold on the effected area. The ice maker has been a real boon to me, albeit abit expensive though. Anyway bye for now, take care everyone, look after yourselves love and hugs Astrid40xoxox


#12

I second what Sunshine said about plenty of rest/sleep and limiting sodas! I've always needed more sleep to even come close to feeling "normal." Lots of good tips on here =)


#13

I used to be a complete coke cola addict, i have given it up for over two months now and i have noticed a difference. Trouble is as i drink only cold drinks, if i visit anyone, all they seem to have is coke cola, no low sugar squahes or orange juice but coke cola, and that was what got me on it in the first place. I do believe because of the sugar content it makes people want it more, i would drink it and feel as though i had a bit of energy after but of course the low came quite soon after, so now i work out whether i need something else or am i just lacking fluids anyway. Because i do tend to sleep alot, sometimes i think i cant of drank enough fluids today. As i am on chemo i need to get down 2 litres of water or water with something a day, which can be really difficult. I find sometimes having diorolyte helps too, as it has the essential electrolytes a body needs for help with revocery from sickness, which i get with the chemo injections i do for the Lupus. I dont know if anyone else has this at all.


#14

Love the prayer, Ann! Thanks so much because I still have problems with accepting my spine pain when it acts up, which I just noticed again this afternoon. pax, pj

Ann A. said:

PJ,

I wrestle with St. Francis every day, because I am not yet willing to follow his model of acceptance when it comes to pain

I thank you, Lord God,

for all my pains;

if it please you, Lord,

increase them a hundredfold.

I shall thankfully accept

\whatever sorrow you give, not sparing me;

for in the fulfillment of your will

I find my greatest solace.

This prayer from St. Francis can be found in the Doubleday Prayer Collection compiled by Mary Batchelor and published in 1992 and 1996 on page 185. The prayer from which you typed an exert is also included in this collection and can be found on p. 255. Along with the assertion that it is often associated with St. Francis (I interpret that to mean that there is some scholarly controversy over authorship?) But it clearly predates and Covey and I should not have written my comments in such a way as to make it appear that he was taking credit for work that was not his own. At this point I cannot even check to see if Covey did or did not reference St. Francis or any other source because I do not currently own a copy of The Seven Habits of Highly Effective People.. I have found the book to be so helpful, both in my personal life and in the work that I do for secular government sponsored organizations, that I keep giving my copy away. For that same reason I cannot tell you on what page he actually uses the phrase or what to what step it refers.


#15

Yes i agree with you Pjarden, this is a wonderful prayer. Thankyou for sharing it with us, love Astrid40xoxox


#16

What has made Living with LUPUS easier or better ? Well that's a good !!! Since Aug. 2011- Dec.2011 , whaen i had my first major flare ( and didn't know what was wrong with me ) , i can say that that here today , " Am happy that i didn't Kill myself " . Yes , Kill myself !!! Haveing this Lupus stuff has really open my eyes more towards any and all prople that people has and havee to bare with mentally . In other words i've learned to deal with people as though they deal with me - i don't seek for company any more , i keep my space away from people whom are stressful for me ( STAY AWAY ) !!! Am more senstive to people that walk with walking canes, in wheelchairs , or whom are in just pain itself ... But the more i logg into this network and read some of the stories it REALLY help me to CALM DOWN totally when i don't want to move or just do NOTHING , Thanks for this network that we have here it is a major PAIN PILL and i will TAKE IT DAILY ... It works for me !!! Thanks once angain to all my friends whom i've become friends with , and those to come ... Happy NEW YEAR ... talk with you all later... Beverly L.


#17

@Beverly, glad you are here with us :slight_smile: You’re so right about avoiding stress, stressful people & situations. I’ve definitely learned that lesson and also how to say NO. I turned down my boss 2-3 years in a row when she asked me to take on added responsibilities. I don’t feel as strong a need to be a people pleaser and care taker to everyone. I need to take care of myself for right now. This also means telling people that they need to take their drama elsewhere because I can’t let my energy get wasted on nonsense that shouldn’t involve me in the first place.


#18

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


#19

Hi Carey, Well done for being strong and sticking to looking after yourself. Its hard to be abit selfish sometimes, we tend to feel guilty if we arent doing what everyone asks of us. But there are times when we need to say no, i cant do that and sorry. People need to accept this rather than manipulate us so we feel guilty if we dont help out when they ask. But we need to think of what the consequences would be for us if we carried on helping and listening to other peoples problems when we are barely coping with our own things. So well done for being so strong and keep it up. I have started doing the same since about 6 months ago, as i realised i was getting more and more stressed trying to be someone else's sounding board and these people never are there for us, so why put ourselves through it. A friendship should be a two way relationship and if its not like that, then its not worth the hassle. Anyway i wont go on any further, take care, happy new year, love and hugs Astrid40xoxo


#20

Found a decent used hard copy of one of Ruth Rendell's short story collections, "The Copper Peacock," last night for $1.00 when I stopped for only a minute at the used book cart my local supermarket chain now offers its customers for $1.00 a piece.. I also picked up two novels I haven't read by writers I like. One of whom, Ann Beattie, also writes good short stories, mostly comic stories that often reveal keen observations or motives that lie under the surface of the assumptions and mistakes we all make and might otherwise miss about society and relationships. Reminds me of a contemporary Jane Austin with a bigger kick of satire. Thanks for your suggestions. pax, pj

astrid40 said:

Hi Pjarden, thankyou for this post. Its funny you should mention about short reads, i have a fair few of these i have purchased. I too have bought them from Amazon and other book stores as ebooks for my Sony ereader. I love the Sony ereader as my eye sight isnt great and i have to use glasses that sometimes dont work because i have pigmentation on the back of my eyes, so the ereader can increase the text size to XXL so then it is easier to read on bad days. There are quite a lot of quick read books you can find, i have some by Helen Dunmore, Lynda La PLante, Peter James, and more, those names are the ones that do thrillers. I also purchased a funny look at life book called Paranoia In The Laundrette which is only 45 pages long, its by Bruce Robinson. Its about this chap who goes to the laundrette and while he is there all sorts of things happen to him in that short period, it can be funny depending on how you look at it. Another one i have got is called The Boys Upstairs by Jane Lebak, about a priest who opens up his house and church to take in homeless children with a brother coming home from Iraq, thats quite a good one to read too. Also there is Cleanskin by Val McDermid for those who enjoy thrillers. And Freaks by Tess Gerritsen which is free for people with ereaders from Amazon and Kobo.com for those with other types of ereaders which take epub and pdf files. There is also another short read called Strangers on the 16.02 by Priya Basil, its a short read about a train journey and the people you see and meet, it will make you think differently about your train journeys in the future, its another good short read if you cant concentrate too long on a full size book. Like you have said Pjarden, the short reads are ideal if you are having a bad time with reading, as you dont feel as overwhelmed as you would with a full size novel or any book you would like to read normally. Magazines are also ideal as you dont even have to read those, you can just flick through to see if anything takes your interest. Even a short film can help to relax and fall off to sleep. If you have someone who is willing, also i find soaking my feet and having my feet pampered depending on if you are well enough to sit up for ten or so minutes. My husband sometimes brings in a warm face cloth when i am having one of my really hot moments, i am lucky to have him do that for me. I do find listening to music helps, it depends on your mood what you might choose at the time, i know it does with me, i can go from having something really soft sounding to abit more lively. I used to find a tens machine helped but now the pain is at that level it doesnt help anymore sadly. I think everyone is different with what they find helps, but i am sure most like listening to music. Anyway Pjarden thankyou for this, have a good evening, take care, look after yourself, bye for now, love and hugs Astrid40xoxoxo