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tgal
03-27-2011, 09:51 AM
I know we all have a lot going on and our stress levels are really high but I am worried that we are forgetting one of the main purposes of this board. Yes, we are here to help when people are scared, or when they need information but there is another reason that I think we forgot. We are here to let people know that, even with this nasty disease, we can go on living. There is life with lupus you just need to make some adjustments so I am creating this thread.

I want us to use this thread to tell what adjustments each of us have made that have helped us live better and that has brought joy to us. Too many come in here scared that their life is over and yes, we have to help them understand and deal with their crisis, but I think we should have a thread that talks about ways we have learned to live that have brought joy.

tgal
03-27-2011, 10:00 AM
I will start!

I am one of those people that have basically become allergic to UV rays. This means that even car rids and shopping trips can make me feel like I have been to the beach for three days. This because a huge issue because I have a 15 year old daughter and I was really not able to do anything with her because I was getting sick before we ever got to where we are going. One day I got mad and decided that this disease is NOT taking away my time with my daughter and we found a way to adjust.

Ash and I will hang out at the house during the day and then start getting dressed very late in the afternoon. We leave from the house as the sun is setting and go do whatever we want. We have found that these evening trips allow us to be the people we were before I became ill and it is absolutely wonderful! Lupus made us change our pattern but it didn't take away our joy!

craftkeeper
03-27-2011, 10:30 AM
Tgal i am so glad you started this thread..I was just talking to a friend of mine and she said "Sheila i know you will go on and enjoy your life even with the Lupus dx. That's just the way you are."

I have a nine year old and going outside has also been such an issue. Finding out about my Lupus just before spring was really a downer and i too seem to be extremely sun sensitive. So evening it will be, of course if any of you read my introduction post, i am a extremely morbid person who enjoys all things dark anyway,LOL I will continue with my art. Got myself on a better diet[i will not give up my coffee for any reason] and am going to embark on a new exercise routine that i can benefit from without killing mysef. Oh yeah, i got high hopes friends.

By the way just found out my oldest daughter is pregnant with my third grandbaby. I am so blessed and thankful to be here with all of u.

lovehubby
03-27-2011, 10:47 AM
I understand tgal that you want positive feedback and that is great and I think this is a good thread too start up too because being positive is so important. But it would not be fare to make it all great because we know it is not and yes we can talk about what we do to make life easier for us but the truth is it doesn't always work. And sometimes we have to get the negative out too so then we don't stress from holding it in. And I thank God that we have this site to do that. So yes the good things we can do to help ourselves is great but there will always be negative with Lupus we just need to learn that we are not alone and this site is here to cry, vent, laugh, joke and even disagree !

tgal
03-27-2011, 11:28 AM
I understand tgal that you want positive feedback and that is great and I think this is a good thread too start up too because being positive is so important. But it would not be fare to make it all great because we know it is not and yes we can talk about what we do to make life easier for us but the truth is it doesn't always work. And sometimes we have to get the negative out too so then we don't stress from holding it in. And I thank God that we have this site to do that. So yes the good things we can do to help ourselves is great but there will always be negative with Lupus we just need to learn that we are not alone and this site is here to cry, vent, laugh, joke and even disagree !


I am not saying make it all great. I just want one thread where we talk about good things so people know that we can still have them. I am not sayin ignore the old posts and or discount the pain, suffering or fears. I just want one thread tha can be looked at to see that a diagnosis is not the end of the world and, hopefully, help us all with tips to reclaim part of our lives

BarbaraB
03-27-2011, 11:31 AM
I have one big plus and one big minus. The plus is that Lupus forced me to slow my life way down...in what can be the rat race of life the rats were winning...in doing so I rediscovered my love of photography. I go out in the mornings and evenings and take pictures of whatever captures me at the moment. Some of them are very good and my family is encouraging me to enter them in a local show. It's peaceful and as slow as I want it to be and I can edit them on my computer when I feel like it. It also helps me remember where I've been and what I've done. The downside is that now I want the latest version of Photoshop and a macro lens......:)
The minus is that I have a wood shop and I used to do a lot of tinkering there. When I was working it was my sanity. I made some furniture and bookshelves for the house and some tables for friends, woodwork for the renovations we do on our house, keepsake boxes in exotic wood.....but now I can only do very small projects. I no longer have the strength (or the pain is just too bad) in my hands or shoulders to safely work on the big equipment. Also working the entire day on a concrete floor, even though I love it, is bad for the knees. My husband got me a chop saw last summer so I can still do some work, but about 95% has been taken away. I'll be gradually selling the equipment...
Sadly, I have not rediscovered any love of cleaning or cooking....

tgal
03-27-2011, 11:35 AM
I have one big plus and one big minus. The plus is that Lupus forced me to slow my life way down...in what can be the rat race of life the rats were winning...in doing so I rediscovered my love of photography. I go out in the mornings and evenings and take pictures of whatever captures me at the moment. Some of them are very good and my family is encouraging me to enter them in a local show. It's peaceful and as slow as I want it to be and I can edit them on my computer when I feel like it. It also helps me remember where I've been and what I've done. The downside is that now I want the latest version of Photoshop and a macro lens......:)
The minus is that I have a wood shop and I used to do a lot of tinkering there. When I was working it was my sanity. I made some furniture and bookshelves for the house and some tables for friends, woodwork for the renovations we do on our house, keepsake boxes in exotic wood.....but now I can only do very small projects. I no longer have the strength (or the pain is just too bad) in my hands or shoulders to safely work on the big equipment. Also working the entire day on a concrete floor, even though I love it, is bad for the knees. My husband got me a chop saw last summer so I can still do some work, but about 95% has been taken away. I'll be gradually selling the equipment...
Sadly, I have not rediscovered any love of cleaning or cooking....

LOL@ cleaning or cookin! Nor I! You would think that the cleaning fairies would come help out since we are sick!

Toradoradi
03-27-2011, 11:58 AM
I'm still pretty new at this so I can't say I've found what brings me joy with this disease yet. I haven't adjusted and still doing the things I did before. I'm just trying to make my body understand and my mind that I can't push myself so hard all the time. Yesterday I went out to lunch with my mom, aunt and sister and that was nice. And then we went to the craft store and I found paper on sale for half off! Which I need for my wedding invitations so I was excited about that! Got a few other things for the wedding as well so I actually feel like I'm getting somewhere with this! I did push myself a little to hard towards then end of the day though and ended up hurting later after I got home, but I made myself sit on the couch, catch up on my dvr and address the save the date envelopes for my wedding. I should have cleaned the house or cooked something instead of eating cereal for dinner but I made myself sit and not do very much... This is what I am learning right now.

tgal
03-27-2011, 12:01 PM
You know that really is the hardest thing to do. Not push yourself too hard and to ignore the cleaning! I am so glad that you were able to get some things done for your wedding! When is the big day?

Toradoradi
03-27-2011, 12:05 PM
Dec 10th of this year! He proposed in Dec on our 4 year anniversary and I can't believe it's already been almost 4 months since then! I don't feel like I've gotten anywhere! I haven't even picked out my dress... Or done half the stuff that lists say I'm supposed to have done by now lol! But it is happening! I got further on it yesterday and I'm getting those save the dates out by the first week in April! I'm making progress!

lovehubby
03-27-2011, 12:09 PM
You will learn what works good for you. I have learned and I am still learning through trial and error what works good for me. It seems that things change from day to day for me. Had a great day today went to lake and took a walk with my big floppy hat on to keep the sun off my face.

Nonna
03-27-2011, 12:09 PM
Ok, I'm sure everyone will remember how much I love watching my granddaughters play softball. It's been a big adjustment for me. Last year even, I could still go and spend the whole day. This year however, I'm having to adjust. I can't spend the whole day at the park. But I can call and my daughter tells me how it's going. Sometimes I get to hear the roar issued by the parents when a good thing happens. The upside is that I'm knitting more.
This year has been rougher than last year, but I have also found understanding and support from my family.
Nonna

tgal
03-27-2011, 12:11 PM
As I am sure you have figured out I have NO short term memory so you HAVE to keep us posted one what is going on! I am so happy for you!

red246
03-27-2011, 12:55 PM
Ok, I'm sure everyone will remember how much I love watching my granddaughters play softball. It's been a big adjustment for me. Last year even, I could still go and spend the whole day. This year however, I'm having to adjust. I can't spend the whole day at the park. But I can call and my daughter tells me how it's going. Sometimes I get to hear the roar issued by the parents when a good thing happens. The upside is that I'm knitting more.
This year has been rougher than last year, but I have also found understanding and support from my family.
Nonna

Nonna,
If you have a cell phone your daughter could take mini videos of your granddaughter playing and send them to you. That way even when it's too warm/sunny out you could still watch her some. (((hugs)))

tgal
03-27-2011, 01:05 PM
These are wonderful posts! That is exactly what I was thinking when I created this thread! Great advice red!

kim,l
03-27-2011, 03:01 PM
i love camping and fishing and the sun is also a concern with me so now we go early in the morning and in the evening and my husband always finds shady spots for me also lupus has made me slow down i was always rushing around now i have learn,t that there is other things more important than having spotless house and that excepting help from someone is not so bad as i very independant i am slowly learning to chill out and if i work around it lupus does not have to affect who i am and what i do that is what this site has done for me hugs kim l

Bonita
03-27-2011, 05:11 PM
I was invited to go along with my son and his family all expences paid to go to Disney World for a week but i knew that would be too much for me and i have never been there but i was glad they invited me and that the kids had a good time. I used to be a super clean freak and my step dad told everyone you could eat off my floors but not anymore there are better things to enjoy a little at a time and when you feel like it. The dirt will still be there tomorrow. Bonita

steve.b
03-27-2011, 09:59 PM
i was always a workaholic. now i am retired. (on a pension). i am learning to slow down and smell the roses. it is wonderful.
i rent a house on a cattle farm. i see others work, and i enjoy the peaceful pace.

Colleenc
03-27-2011, 10:18 PM
Since being diagnosed with LUpus, I have promised myself to live life to the fullest, espescially when I'm well. Each day I'm not in a hospital or laid up sick I make sure to enjoy!! Living life to the fullest for me is spending huge amounts of time with my kids, dogs and hubby I just adore them. With me getting sick the one great thing that has happened is my family is a whole lot closer, we realize we need to cherish every moment. I have taken up riding a motorcycle(my hubby bought it for me last summer) (a life long dream) I'm going to fly with my hubby very soon in his plane (he has been a pilot and had a plane for a few years, but I have been terrified to go up) but I'm now ready and willing!!! Get a few more tattoos and travel when I start to feel a bit better!! I have had to slow down since my body doesn't like to cooperate any longer. But with fight I just power through and always give my 100%!!

Colleen

Nat
03-28-2011, 07:22 AM
This thread was a fab idea!!! To be honest I don't think I've been thru nearly as much as a lot of people on this site but for me, the changes I've made have been to say "yes" to more things. This year, that got me a promotion at work (given the type of work I do, I'm yet to see the impact on my health due to the stressful nature of my work) and resurrected my love for AFL footy because my brother got me into a fantasy league which is something I've never done. By saying "yes" more I've met a bunch of great people and scored myself a trip to europe next month, thought let's be honest who's going to say no to going on a holiday to Europe!
Thanks tgal for starting this thread, reminds me of the good things I've got in my life despite the lupus and the crap that brings :-)

tgal
03-28-2011, 07:40 AM
Oh that sounds wonderful Nat! I know you are going to have a fabulous time! Thanks so much for sharing that with us!

rob
03-28-2011, 07:50 AM
After the SLE diagnosis, I had to give up my lifelong love of flying-sort of. I no longer could safely fly the real thing, so a few years back I took up the hobby and sport of building and flying radio control aircraft as a substitute. Guess what-it's harder than actually flying a real aircraft! It's a great challenge, and I've branched out into large scale Jets, and Helicopters. I fly an aerobatic demonstration every year at the local airshow. Dad loves it, as his flying days ended a few years ago too. He helps me at the field, and we go flying the planes a couple times a week in the summer, and I fly helicopters almost every day, since I don't need to go to an airfield for that.

I also enjoy sailing. Karen and I take the boat out nearly every weekend in the summer. The Gulf of Maine is a vast, untouched, and pristine wilderness with thousands of miles of coastline, and hundreds upon hundreds of islands. And the wildlife-everything from harbor seals to the largest mammal on Earth-the Blue Whale, can be seen. And I love classic sailing ships-the Schooners, and there are plenty of those around here to admire!

I handle the models and the sailing pretty well despite the SLE and MS. If I suddenly feel like a flare is coming on while on the boat, I can always go below and let Dad or Karen take over. It's pretty comfortable. As far as flying, I don't fly on the brain-fog days, for obvious reasons!

Rob

mountaindreamer
03-28-2011, 08:39 PM
like so many people here, i had a very active and busy life....then, i watched in total dispair as lupus "stole my life". with the help of the incredibly wonderful members of this forum, along with my personal determination (stubborness), i made some adjustments, and i took my life back.

i make quick trips to the grocery store, go in with a list, and i don't meander through the store.

i also don't shop at malls anymore. I choose small stores or interesting antique/novelty shops for shopping, this gives me a break between stores, and i limit my exposure to UV rays. These little stores are so much more interesting than malls.

Unfortunately, i can't camp anymore, so I got a fire pit for my backyard. Now, my grandkids just come over to my house, and we roast marshmellows and tell stories - just like camping.

I can't sit in the sun to watch my grandson play baseball, so i wear funky hats, and colorful long sleeve overshirts....my grandkids always giggle when they see me at the park in my "crazy lady clothes."

I have always had the tradition of cooking thanksgiving dinner for family, friends, and anyone who was spending the day alone. I always took a plate of food to the policeman who was spending his holiday patroling the neighborhood shopping center....I could not cook this year, and got really sad about it. I was so depressed, but had no choice, so I took my family out to lunch at a little local restaurant....we had a wonderful time eating and visiting....and afterwards, i was not in bed for days. (oh, yeah, i bought a plate and took it to the police man). Now, i have started a new thanksgiving tradition.

yes, the adjustments are tough, it is really sad to realize that life as you knew it is over. I have learned to be thankful for the things that i have done in my life, and i believe that this is a positive thing.....so many people go through life without "smelling the roses." Lupus has given me the opportunity to stop and see the beauty in the things around me. In my healthy life, I don't know if i would have ever just sat outside and listened to the beautiful music of the birds (i was always so busy) ....now, i even have a set of binoculars and a bird book. lol

thanks mari....this is a great thread.

tgal
03-28-2011, 09:07 PM
You just brought tears to my eyes, Phyllis. Thanks so much for sharing that. I am so glad to see people posting here. Sometimes we all need to remember that, no matter how hard it is, we can adjust and find happiness. Wonderful suggestions from you as well! Thank you again!

Nonna
04-01-2011, 11:58 PM
Bump because this is a great thread for us all to remind ourselves with

Bonita
04-02-2011, 05:59 AM
We cherish the good days and deal with the bad and thank God we are here to enjoy both. Bonita

mountaindreamer
04-02-2011, 06:51 AM
i do not like living with lupus, but i do find myself appreciating the opportunity to learn how to "cherish the good days". i guess this is the most positive adjustment that i have made.

Saysusie
04-02-2011, 12:08 PM
I just LOVE this thread. Thank You, Tgal, for starting it. I think that it is a good idea to have "balance" in our support of one another. So, while we continue to provide care to each other for all of the negative effects of these diseases, it is just as important that we provide information, suggestions, and hope by talking about some of the positives that we have discovered as a result of these diseases.

I was, also, a very active person and loved doing all things outdoors (hiking, swimming, tennis, running). As we've all discovered, all outdoors activities came to a screeching halt when we developed and/or were diagnosed with our auto-immune disorder. There are still some outdoor activities that I continue to participate in, however, I have to do them when the sun begins to set. I love to swim, so now I do a lot of moonlight swimming.

However, the most important thing that I've done (or re-done) is singing! Fortunately, this is an activity that takes place indoors most of the time. I had stopped singing for many years, especially after the loss of my daughter. But, I decided to get back into performing and, oh my gosh, am I glad that I did. Nowadays, my time is spent in rehearsals, performances, or recording. While these things can be extremely time consuming (and exhausting), I am at my happiest when I am doing them. Everyone that I work with knows of my diseases and they understand if I have to take frequent rest breaks, if I cannot make every single rehearsal, or if I need to leave rehearsals (after my part is done) due to my illness.
So, I guess my biggest adjustment was returning to something that I thought I would never be able to do again and loving every second of it!

Let's keep this thread going..this is wonderful :-)

Peace and Blessings
Namaste
Saysusie

lacey50
04-02-2011, 12:27 PM
You make adjustments many times in your life. You make adjustments when you start a new job, when you get married, when you have kids, and so forth. Lupus and other AI's are just another adjustment. There will be days that are rough and days that your body just refuses to do what you want it to do. There will be days when you will be depressed and upset about how your life has changed, but you have to remember that change can be good. Just take the time to realize it, like the saying goes.."take time to smell the roses"

My AI's have given me the opportunity to realize that the changes in my life are NOT all bad. I now can relax from the stress of work ( I retired). I've adjusted to the sun by always wearing sunglasses and sunscreen, or just staying out of the bright sunshine. I've gotten re-aquainted with my neighbors. I've had so much more time to draw and paint which I love to do. I've adjusted to the fact that I now must take meds everyday. I must allow myself more time to get things done around the house and more time for shopping trips.

And each day I try always to remember that I have been blessed with a wonderful husband and children, and that I am ALIVE...

And I have found these wondeful people on this forum to share all my good and bad days andto let me know I am not alone, that has been another blessing. So, even when you are in pain, Just take time to look around you and see all the things that are good in your life, your new life as it is now. Remember, Life is good even with Lupus.

Saysusie
04-02-2011, 12:31 PM
Lacey;
Your post pretty much sums up my life motto (seen as my signature on all of my posts) "Look For The Good, and when you find it, PRAISE IT!"

tgal
04-02-2011, 02:13 PM
I just LOVE this thread. Thank You, Tgal, for starting it. I think that it is a good idea to have "balance" in our support of one another. So, while we continue to provide care to each other for all of the negative effects of these diseases, it is just as important that we provide information, suggestions, and hope by talking about some of the positives that we have discovered as a result of these diseases.

I was, also, a very active person and loved doing all things outdoors (hiking, swimming, tennis, running). As we've all discovered, all outdoors activities came to a screeching halt when we developed and/or were diagnosed with our auto-immune disorder. There are still some outdoor activities that I continue to participate in, however, I have to do them when the sun begins to set. I love to swim, so now I do a lot of moonlight swimming.

However, the most important thing that I've done (or re-done) is singing! Fortunately, this is an activity that takes place indoors most of the time. I had stopped singing for many years, especially after the loss of my daughter. But, I decided to get back into performing and, oh my gosh, am I glad that I did. Nowadays, my time is spent in rehearsals, performances, or recording. While these things can be extremely time consuming (and exhausting), I am at my happiest when I am doing them. Everyone that I work with knows of my diseases and they understand if I have to take frequent rest breaks, if I cannot make every single rehearsal, or if I need to leave rehearsals (after my part is done) due to my illness.
So, I guess my biggest adjustment was returning to something that I thought I would never be able to do again and loving every second of it!

Let's keep this thread going..this is wonderful :-)

Peace and Blessings
Namaste
Saysusie

Thank you so much for sharing this! The perfect example of our lives changing but not ending!

tgal
04-02-2011, 02:28 PM
I don't know if I have shared this story yet so if I did, blame the fog, and if I didn't then read on.

One day I was at the end of my rope. SS had just denied my first application, we were living on $300 a month, my car had been repossessed, my cable turned off , my seizures were not controlled at all and on and on. I just felt like my whole world was falling apart. I felt like a horrible mother to my 15 year old daughter. I sat in the living room and began to cry over everything and I looked over at my daughter and told her how sorry that I was that I was failing her. She looked over at me and said the words that I will never forget: "Mom, I don't feel like I am being failed or even that things are that hard. I actually like our life the way it is now. You are here when I leave for school and when I come home in the afternoon. I don't have to wait hours for you to get here and sometimes be too tired to really visit with me Mom, I love our life now".

Wow. I began crying even harder as I realized that she was able to view the cup half full when I had only seen it half empty. So another thing that happened good in my life because of this nasty disease is that I am here when my daughter leaves for school and I am here when she gets home. I get to be a full time mother and that is something that I have never been able to be that before.

I really like seeing it her way much better then the way that I saw it

kim,l
04-02-2011, 08:02 PM
that was so beautiful and ashley is a beautiful girl who loves her mum and why not you my friend are a inspiration to us all

magistramarla
04-02-2011, 10:33 PM
This is a lovely thread, Mari. Thanks for starting it.
The adjustment that I had to make was leaving my teaching job. I loved that job, and loved "my kids" that I taught. I was pushing myself very hard the last couple of years that I taught, and I finally came to realize that the stresses of my job were not at all good for my health. Because of this realization, I encouraged my husband to apply for a PHD program through his Air Force job. He was accepted into the program, and our lives changed for the better.

We moved to California, which I am loving, and we are living in a much smaller home, which is much less stress on me. I've been able to return to some things that I used to do that give me joy. I've returned to serving on the board of a military Spouses' club. I love the social life of the military. I go out monthly with "The Lunch Bunch". I'm a member of "The Gourmet Groupies", and get to try new things that my friends cook, as well as share my own recipes. I love to cook, so I watch The Food Network when I'm resting and then try out all kinds of new recipes. Jeff never knows what sort of a meal he will come home to.

I've learned to pace myself. I have my MTX injection on Sunday evening, so I don't schedule anything for Monday and I use that day to rest. I do the fun activities that I love, but I rest a lot after each activity. My cats love that I spend lots of quality time with them on the couch! Jeff and I have also gotten much closer now that we are "empty nesters". He worries and takes care of me when I'm not doing so well. (The man can't cook, however)

We live far away from our kids and grandkids, but I keep in close touch, and we travel to see them as often as we can. We've even traveled to Japan and to Greece in the last couple of years. I've learned to travel with my wheelchair and to take advantage of privileges given to the disabled. The best thing that my PCP ever did for me was to order disabled plates for my car. I've learned to take full advantage of having those.

I also love that I can always come here to WHL to "catch up" with my friends here, be inspired by many of you, and help someone if I can. Thank you all for being here.
Hugs,
Marla

SandyR
04-04-2011, 11:23 AM
It took me a while to respond to this because my first thought was that I didn't have any positives but the more I thought about it the more they popped up in my thoughts so here goes.

Before I was sick (visibly) my extended family and I were not as close. Seeing my ankles and legs blow up to the point of not being to drive or walk properly in June 2009 brought them to my reality that something is wrong and has made us all closer as they have continued to show their care and concern.

Before I was sick I would often leave home, go to work, run somewhere right after work, maybe run another errand, definitely eat out, and get home just in time to crash into bed between 11pm and 12am. Now I am forced to spend less time running around and more time relaxing after work. My car is less abused, my wallet is happy not to fill up on expensive gas so often, my IBS is happy that I have started cooking on my good days again and my ankles/legs only resemble the elephant-man a few times a month and not all the time.

Before I was sick I used to go dancing multiple times a week, hiking once a week, and try something physical as often as was possible. I wasn't an supermodel but my shape was definitely less round. Now that I am forced not to do those things as often they are that much more special to me. I appreciate participating in these activities more fully. I also have time now to read the books that were collecting dust on my shelves and to work on some abandoned craft projects and to even learn a new craft and crochet myself a blanket.

I used to consider myself a glass half-full person but this thread has shown me that somewhere between the before and after I changed my perspective. Thank you, Mari, for pointing that out to me. I'm going to be more conscious of how full the glass is once again.

tgal
04-04-2011, 11:25 AM
Beautiful Sandy! Thank you for sharing

Saysusie
04-04-2011, 11:47 AM
Again....I LOVE this thread. It sounds as if most of us are learning how to see the "Glass Half Full" as a result of our illnesses. One thing for certain, my diseases have taught me how to slow down, look around me and see all the beauty that is there. These are the simple things that I, previously, ignored because of my busy, active life! My life is still active, but in a much different way and I have learned to appreciate the important things.
Tgal; isn't it amazing how, when we listen, our children can teach us some of the most valuable lessons in life?? You and Ashely are so blessed!
As I've mentioned before, I do try to live my life according to my signature below "Look For The Good (because it is ALWAYS there) and when you find it..PRAISE IT!"

Peace and Blessings
Namaste
Saysusie

Linda From Australia
06-10-2011, 10:43 PM
I know we all have a lot going on and our stress levels are really high but I am worried that we are forgetting one of the main purposes of this board. Yes, we are here to help when people are scared, or when they need information but there is another reason that I think we forgot. We are here to let people know that, even with this nasty disease, we can go on living. There is life with lupus you just need to make some adjustments so I am creating this thread.

I want us to use this thread to tell what adjustments each of us have made that have helped us live better and that has brought joy to us. Too many come in here scared that their life is over and yes, we have to help them understand and deal with their crisis, but I think we should have a thread that talks about ways we have learned to live that have brought joy.

Thanks for this thread, I really need to find some answers TODAY.... Now I will go back and read what advice people have made

lovedbyHim
06-11-2011, 02:52 AM
HOW WONDERFUL. TO CREATE THIS THREAD!

Before lupus I was a motivational speaker, a runner, backpacker, coordinator of various support networks, etc.,etc.,WORKAHOLIC! I was too busy to see the all the fullness life really had for me. One day a lymph node swelled the size of an orange and the inflammation and pain lasted for 6months. I was forced into changing my life priorities. How grateful I am as it has deepened my love for everything. My faith has exploded and now I do prison ministry and love on broken women.

My senses have become so intensified. Icecream tastes better. Flowers smell better. Kisses are sweeter. Music speaks to me more deeply. My Passion for living is much more. I don't want to miss it! I'M TRYING SOMETHING NEW ALL THE TIME. It's a "bucket list " thing. I just took in an abused dog who is presently shaking next to my side from fear of thunder. She's loved now and she knows it. I say try everything while you can and don't let the disease steal your joy!

tgal
06-11-2011, 10:50 AM
I still love this thread and I too need to hear (read) something joyful today. Loved! You sound like me! Since I had to stop working I have adopted in two abandoned animals (one dog and one cat) to go along with the two I already had. I believe that the size of a persons heart is measured by how they treat animals. You have a big one Loved

lovedbyHim
06-11-2011, 12:18 PM
Thanks! You do too!