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How do you cope with your Lupus. I have been home 2 1/2 years now dealing with Lupus. To help me deal with my illnesses, I've dived into music as my escape. I play guitar, but have since expanded to writing music. I then got into learning how to record music as well. This is my saving grace. When things get so bad and I can't do my music I listen to music. When I had the pericardis, before I went to the hospital, I was in so much pain I sat in the chair and listened to music (cranked up very high) and crying for 2 hours. That is my escape. Hubby then took me to the hospital where I was thankfully admitted.

Nutty
 

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Hi Nutty,

This is a nice idea for a thread :)

I have several escapes as I have always had several interests but funnily enough my "escape" has been through my work. I'm a translator but have also always enjoyed creative writing. I enjoy coming on here and actually enjoy writing posts. I have also written a few poems and other stuff.

Recently I have been working on a massive project which is refreshingly different from my usual things as it is a project to celebrate the 10th anniversary of a "museum" that promotes, finds and distributes (exhibitions) the work of mentally handicapped artists. For that job I have had to translate the texts for 200 artists but the texts are 600-800 words and I have been summarising them into around 200 and have had free rein to use my own words etc. I have had photos of all the works on CD as a reference so that I can "see" what I'm writing about.

I also enjoy training my dog. I used to train horses but can't even ride right now so I have found some of the same pleasures in training the dog :lol:

If I'm feeling well, I love walking in the woods (dog comes too) or going on photographic "expeditions"

I plan on getting back to aikido even if very gently and not necessarily going "further" in level as it is a martial art which is very beneficial to me from a suppleness point of view and which requires no physical "strength". It's still to early but I want to get there and that it something in which you really escapes and thinks of nothing else.

Katharine
 

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Wow nutty, i wish i had an escape like you. I tried drawing, sewing, crocheting but got bored real quick. Right now replying to posts is my escape. I get to type what is on my mind if the subject is relative.

But most times i'm doing house work where only 2 of us live. This is the most boring,, going outside is not a good option this time of year and i really don't have many placed to go. On top of all things the meds i'm taking now make me sleepy so i do just that,, sleep my days away. I"m stopping this medication because even though it works for my fibromyalgia i'm afraid I may one day not wake up. Besides, it has a few side effects i'm not enjoying at all, like major constipation,,with my ibs that is not good,, i have already had 2 episode of major stomach pains from lack of movement. Then it makes me sweat a lot which is embarrasing when you go out looking good and start washing it all ways with perspiration. Then the sleepiness is beginning to get on my nerves,, it takes me 2 days to wake up fully after stopping the meds. There has never been a time in my life where i can drink 2 cups of coffee and still be able to sleep 4- 6 hrs immediately after.

Sorry, this was not suppose to be a vent session but a post to identify my escape.

I guess what i'm trying to say is if i wasn't troubled with so many meds and health issues i could have more time to find my escape. I strive to be like you one day.

But right now, my escape it to vent

Thanks for listening
 

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Hi Katherine

I enjoy some "me time" watching the home & garden shows on TV but when I really need to lay-down I turn on the heating pad and try to read my gemstone books, I'm rather infatuated with different kinds of minerals that can make-up such awesome stones, beautiful colors ect. I have a small,(very small) collection. Last fall about Sept., my husband took me to the Crater of Diamonds mine in Murphysburo, Arkansas. We stayed a couple of days in the tiny town at a motel, during the day we went to the mine and dug for rocks, they have many kinds of minerals there beside the occasional diamond find by some very lucky people (not me) tho. I paced myself and made it okay, sun-block,hat,lawn chair, fluids and alot of help from God. It was the best trip ever, and we all know how quickly our lives can change overnight. When I was there I didn't have a care in the world, it was truly a gift!!!!
I love it when the grandchildren come, after a day I am trashed tho, but my son gets them every other week for four days and oh my goodness. The oldest is 4 1/2 and my sweet Ella is 2 1/2 and we adore each other. I had three boys, no girls, and Ella is the apple of my eye.
I used to love to crochet, cross-stitch, sew and garden but for years now the muscle pain has put a stop to such:sad: I never could finish what I started and now I opt for the heating pad. I thought of a thread for the "JUST FOR FUN" posts about poems about our heating -pads, I think I could come up with a few good ones except they would probably be considered too ris-kay, if you know what I mean:rotfl: I just may try to submit one someday. If my pad quits working I will do without a meal to replace it ( if I had to ) as I think some others of us would.
The computer is my friend as is this forum.:wink2:

Take care
annada
 

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Hi Nutty!

My escapes adjust depending on the type of problem at the time. If i am very tired and achy I tend to come right here because i always find there are other people going through, and dealing with, worse. I can be distracted while my pain meds, or what ever lotion or potion I am waiting to help stop me itching takes effect. Or i can chill in the early hours of the morning until I can try to get back to sleep again - what ever the reason I am awake.

During the day when i am well enough I work, and for me work is also my hobby, so i am very fortunate.

Usually I am not good around people if I am unwell, so do not escape through friends and family, but relish as much time as possible around them when i am well, which, fortunatley, is more often than not.

Life is good.

Annada


I love semi-precious stones - particularly rainbow moonstones and labaradorite. And all the others! I would have absolutely loved the mine trip you took. Would be like being a child again - don't we all just love 'treasure'!

:love:
 

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Hmm...I don't really have time to "escape" anymore. We have custody of my two grandchildren, 2 years and 11 months. The 11 month has serious birth defects PVL and CP, so I spend all my time doing his therapy.

I used to read, play poker online and watch forensic TV.

Now I watch baby 1st TV, do the babies therapy and wash dirty laundry!

I want my old Lupus life back, when I could veg-out if I was tired or hurting, now I can't even do that....sigh didn't mean to vent either..

Stephanie
 

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Hi Alwin

Oh gosh, I love the red labradorite and the lovely green that can change colors in different light!! I have one each, can't aford very large sizes either. Just to pass down to my children someday. Tanzanite seems to be the rage for some and have a couple of the darker, small stones. Pretty much my collection and not one to spend too much on myself, these I got when they first started to get popular and weren't too expensive. Anymore my meds and the cost of gasoline takes presidence over any other luxury other that food and utilities. And of course my heating pad:rotfl:

Clare, I will be good, I love you for all the good information that you give us. As well as the others here who have helped me with their advice and not the least of all encouragement. You are appreciated!!!!!!!!

I hope that someday I can go play in the dirt again like I did last summer, it was pretty amazing considering the heck I have had this year with everything. We always remember the good days now, how precious they are!

annada
 

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Fabric art. I was told all my life I had no artistic ability and I shouldn't even try. In high school I bought myself a little kit of oil paints and my mom told me I had no business with them, to give them to my younger sister who was really talented. I did. She went on to become quite an amazing and successful artist. I became a journalist.


Lupus left me unable to write. I can't explain it. But one of these posts is about as far as I can get and I can't carry anything over from one day to the next. Tomorrow I'll read this post and think "hmmmm,I wonder who wrote that?"

So I took up quilting hoping to keep myself busy with something I could put down and come back to. I never did any sewing and it was something to learn and I love pretty fabric.

I fell in love. Now I have gotten into art quilts, fiber art, whatever you want to call it. And I make quilts for beds too. You can find some photos of my work on flickr.com: http://www.flickr.com/photos/onetexsun/

I hope it's ok to put the link in. If not, please take it out and I apologize.

So now I have a passion to pursue and I'm a happier person.

Sunny
 

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My escape is my mobile home in the hills of Co. Wicklow. I try to get there as much as possible during the holiday season,

Im even happier there now because I have finally been able to get internet access! Yay! So I can stay in contact with my friends here all the time.

Sunny, I love the quilt that Jo is guarding. Fabulous! What a talent you have.

Luv n stuff
Joan:rose:
 

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Books, books, books... All sorts: novels, poetry, essays... even travel guides!!!!
I also plan to write a novel (in Spanish, my mother tongue).

Learning languages... nowadays mostly on my own, with books and CDs. My new project is to learn Dutch (I recently travelled to Amsterdam and I loved the people, the country and its history). I speak four languages fluently and three more, so-so. Oh, and I also read Latin, a dead language. Does it count? :lol:

Another thing that I love is to take long walks, especially in a big park near my home. It really helps me unwind, and it's good for my blood circulation too!

Praying and meditating helps me too.

These are the things that help me escape on a day-to-day basis.

Cheers,

Luscinda
 

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Hi All,

What a great subject!

My escape is work & college - I find that keeping busy is a good escape from the mundane thoughts of medication, tests, etc. I also daydream alot - usually about where I'll be in 5 years time & how I'm going to achieve my goals. I have a scrap book that I keep, it has all my 'ideas' and wishes from fitness goals (information on exercising) to wedding ideas (not that this'll happen soon) to things I'd like in my home. It's what keeps me going - the idea that one day I'll achieve my goals, with or without Lupus!

I also recently bought myself a new calligraphy pen as this was something I did at school and was quite good at and I have my cross stitch, which I have to admit hasn't been picked up in a while, and thanks to my mum I recently rediscovered my love of reading.

What is that saying - 'Life is what happens whilst you're busy making plans' so I keep myself as busy as possible to 'escape' - sounds odd when I write it down and read it back but it works for me.

AmandaB
 

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Great Topic!!!! I try to stay active... which kind of helps because I am STILL on low dosage prednisone... but I love working out, going to the gym, walking, the pool (water aerobics)... etc. and I also LOVE music, so I always have my MP3 player attached at the hip. Being around friends and family also helps me cope a little better. My friends and family surprised me last weekend by making over my back yard,,,, I just purchased a townhouse... The landscaping is very nice. I now call it my little piece of serenity... so going outdoors and reading in the morning is nice, before it get too hot...
 

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What a wonderful thread,

It is such a great way to find out just who we all are.... After all we are not just the sick person with lupus....
I have many many escapes... And that is how I deal with lupus and cancer.... Maybe I shouldn't but life is just too short for me to waste my time.... Where do I begin :rolleyes: well, I love to cook, I also cook for a friend, I go to her house everyday and cook their dinner, five days a week, I love to knit.... I have been knitting for thirty five plus years and love knitting with a passion.... George Says I knit with my eyes closed while reading a book....:wink2: I love boating we try and get out in the river as often as we can.... And FISHING OH do I love that... could fish twenty four hours a day if I could.... Walking is another love of mine... used to walk five miles every morning... can't do that now but I do get out for a thirty minute walk... every day... I love reading... I have about ten authors That I try and keep up with.... Gardening... is another love of mine... but if you saw my garden right now you would wonder why I said that.... I have so many weeds.... And yes I love to weed... But we have had so much rain ..hopefully tomorrow will be weeding day.... Love going to art museams and art stores.... I am not an artist but my husband is... And I love and appreciate anyone that can...so I love to see different artists work.... and I love to go to antique stores... As I have quite a few antiques... I love to go and look and occasionally pick something for the house... my two dogs, Sam and Beckie keep me sane also...Beagle and golden retreiver.... And my newest past time is my Abigail.... my new grandaughter who is a treasure and a blessing... I am so lucky. my volunteer work at the church helps me also....
And of course my Husband and children and Friends....
I am never at a loss of what to do next.... I could go on.. But enough is enough :rotfl:.

There are so many interesting people on here.. With great escapes looking forward to reading more....

:love2: Love Penny
 

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My Escape is photography, but if I am too tired, pottering in my garden, reading books (Terry Pratchett) or doing cross stitch.


Claire
 

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Like Sunny I also quilt, it started off years ago just something to do, (I was hopeless at sewing at school, hated it) anyway when I had to give up work 15 yrs ago I started to take courses. Few years later I mentioned to one of my kids teachesers at school, that was it I was asked to teach the kids at school, I didn't think they would be interested ( I was remembering my school sewing lessons so i tried to make it as muchfun as possible. I have been teaching it for over 10 yrs now and have also been asked to take other classes. So what started off as ahobby now became my job, the kids know about my lupus and help and carry all the heavy things, and I love it.
At the moment I'm making two quilts from my parents shirts and blouses (they both died within the last year) I had years ago asked them to draw around thier hands on cloth so these will be used in the quilts too, for my kids.
I was telling a friend about this and now she has brought her dead mothers dress todo the same for her....i see a bussiness starting here.
I read and read and read too....a group of women friends set up a book club, depending on the book we try and choose the rest. to match...Spanish , Arabian ect...good excuse for a night out...
so reading, friends, quilting and generally lie back and smell the roses!!!!!
Love to everyone
Marika
 

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Discussion Starter #17
Wow. Thanks everyone for replying to this post. It's so nice to learn a little more about everyone here. Our little Lupus (Lupie) family:) It also gives other ideas for "escaping". Now I feel like I know everyone just a little bit better. As mentioned, we are more than people with Lupus.

Thanks again and let's keep this post going.

Nutty
 

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Gardening, planning, finding easier ways round things I cannot do.
Harvesting the flowers, sweetpeas, lavender and giving them away to friends and family. Thinking what I can grow to give away next year.

Walking with my Ipod in the countryside or along the seafront and trying to rememmber the words to the songs.
Trying to learn Madeleine Peyroux in a perfect french singing accent to J'ai Deux Amours in homage to my dad and believing I sound just like her!!.

Hanging out with the one and only friend who gets it, accepts it, whatever that may be.

Cuddling and talking with my 11 year old because I know it dosnt last....

Going to Neals Yard to by herbal lotions in beautiful blue bottles when I need to treat myself.

Drinking coffee and eating gorgeous cake when I feel I deserve it.

Fantasising about learning to do something that is amazing!! but never getting round to it.

x
 

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Writing! I just finished my first novel this summer, at 473 pages, the main character has my case of lupus (pretty much exactly) but otherwise isn't much like me which makes her so fun to write about. I love writing writing writing. I have over 400 word documents in my "stories" folder :p

I watch obscure comedy when I don't have the energy to write. I'm a huge Marx Brothers fan, and also British comedies: Blackadder, Fawlty Towers, Monty Python, A Bit of Fry and Laurie, and Jeeves & Wooster. I also chat online a ridiculous amount, hang out with my dog, and have Lord of the Rings (Fellowship of the Ring), the movie, memorized. That's more because I watch it every time I have a treatment longer than 3 hours (Rituxan or cytoxan)
 

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Painting in watercolours...........I am seldom satisfied with the result so I have to keep practicing. The focus and concentration it requires is a wonderful escape.

Gardening.
I'm alway planning what to keep, move or abandon hope with in my little plot.

reading,
i read anything and everything. Currently rereading some of the classics. Jane Austen at present, may move on to Dickens.

I have a fish pond in a shady corner and a stone seat where I can combine reading or garden planning or just daydreaming and watching the fish when my hands are stiff and sore.

I am also completing a cross stitch sampler copied from a victorian pattern I've had for years. It's coming along nicely.
That'll do I think:)
 
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