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Discussion Starter · #1 ·
I have been visiting the site since March, when I was diagnosed, and have found it to be a God-send for information and support. Everyone here has been so nice, supportive, and they have a wealth of knowledge that can’t be overlooked.
The other thing I noticed is that there seems to be an over abundance of pain, suffering, gloom, etc. I know it comes with the territory. I deal with it too, and understand that some are worse than others. But I also know that perception is a state of mind.
With that being said I want to challenge all of us to a new idea. I’m asking you to post about living life to the fullest with lupus, happy moments...no stories about pain, hair loss, etc. We live with all of that every day. Break out of the darkness even for a minute to tell us about your piece of “happy” for the day. I firmly believe the more positive energy around a situation can actually change a situation. This will be a place where we can give hope to others by sharing what we are able to do...not what we can't do, or are afraid to do.
We are all smart ladies and gentlemen. We know our limits. This disease isn’t meant to keep us from living life and it doesn’t give us a right to be lazy or use it as an excuse. Let’s face it. This disease sucks, and it robs us of a life we once knew without fear, pain, and worry. But we have so much to be thankful for, and yes, there are many many exciting things we can do. So join me and live out loud! No matter how little the accomplishment, or how crazy, I want to hear it. Who knows you just may change someone’s life by giving them hope...you may get them out of the house! Let’s keep this thing going!

I'll start...
I realized my life-long dream of seeing U2 in concert last week. It was the hottest day known to man in October, and on any other day it would have wipped me out for that day and the next three. But I planned ahead. I wasn't going to let Lupus keep me from Bono. I got plenty of rest the week leading up to the concert, ate right, kept hydrated, paced myself, and took my meds religiously. I even packed some cool packs to take with me. I took breaks and sat down during slow songs and rocked out to my favorites. Preparation was key, and I had the time of my life...without paying for it later. Months ago I would have never even considered going to a picnic let alone a rock concert. Planning is everything!!!
 

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Nice idea :)

OK, I have already posted about this in another thread but thought I'd add it anyway.

I used to be a very active person, physically and mentally. Both had become pretty difficult for me but, finally, with time, getting my meds right and learning to live with this better, I'm getting some semblance of stability.

I don't work any more but used to be a very goals driven person... I have always loved photography and am continuing to try and perfect that when I can. I enjoy it and it's accessible to me most of the time. However, that wasn't enough... and so, I decided to try and live a life-long dream.

I want to write. I have always wanted to write, and so I decided to finally actually start posting on a writers forum. I posted a chapter from a potential book and a few poems that I have written, things that just came out when they had to and one dedicated to my son... I'm happy to say that on that busy and serious forum, I have had very encouraging feedback and people actually LIKE (some even say "love") what I do.

This may seem small to some but to me I truly feel I am living a dream and I certainly intend keeping it going!

Katharine
 

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I am a stronger,wiser,more patient and empathetic now that I live life day by day.hour by hour some days,and in doing that I can immerse myself in all that is good and beautiful in life like right now sitting here with my beloved golden retriever waiting for a visit from my brother who I haven't seen in a year and being thankful for a wonderfully suppoortive husband and a son I am so proud of.Life can and always will be good if we choose to see it that way.
 

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Yesterday and today I shovelled the snow from our front sidewalk.
In the summer I push my beloved reel lawn mower.
On extremely good days, when weather and body both co-operate, I ride my motorcycle.
These activities prove that I am still alive and functioning.
Someday the probablility is that I will only be alive.
If I wake up in the morning it is a good day; everything after that is bonus.
Douglas+
 

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I have a very sweet reminder each and every day right now that life is worth living. My first grandchild was born in May and she lives with me for now until her parents get permanent orders in the Navy. Each and every second of every day is so special and sweet because she has the most wonderful happy personality and smiles and laughs almost all of the time. She is my ray of hope and sunshine and makes it worth it to get up every day. :)
 

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I've been able to make it to the Iowa Hawkeye football games for every home game; sometimes with my hubby dropping me off close to the stadium so I don't have to walk very far but I've done it & it helps keep me feeling alive and happy.

I also walk my dogs almost every day of the week and have a blast taking them to the dog park too and enjoy the company of other people there while watching the pup run around like crazy.

I'm so glad you took up my suggestion to start this thread and I really hope other people add to it every day!
 

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Pamela b
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Hi
I dont work any more. Although not as active as I was now I dont work I get to spend much more time with my wonderful and much loved dogs.
I also dont clock watch anymore and NEVER wear my watch.

It has its plus sides as my dogs love having me home .


Pam
 

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This thread was agreat idea!
For starters, my hubby took me on a date night. :) Other than work, I don't get out much. He took me to dinner ( with which I also had a beer --I haven't had one in a VERY long time) and to watch 'Couples Retreat' (which was awesome). We also got to go to the wharf and enjoy the ferris wheel at night all lit up. The next day, I covered myself in sun block and took my kids to the county shrimp festival. We listened to great music, the kids played and we enjoyed (way too much) shrimp! Oh, and alligator on a stick! :lol: We had a great time!:)
 

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Discussion Starter · #11 ·
You guys are AWESOME!!!! The responses are better than I could have dreamed of when I posted this. I think one of the most amazing things about having lupus is it kind of forces you to do other, enjoyable things, you may not have given a chance before. Like Katherine with writing. Nothing is too small of an accomplishment. Keep them coming!!!!!

Last night I took our lab puppy (she's a beast!), the baby, and 4 year old for a walk...by myself. What was I thinking? :lol: Made it one mile and felt great!
 

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First post from long time lurker, diagnosed officially two months ago.

When I was first diagnosed, I was all doom and gloom but, to be honest, it has given me a bit of a kick up the bottom. I've decided to enjoy myself more and not let lupus rule my life.

For the last two weeks me and my other half have been planning Christmas on a (DWP) budget, which means I am making lots of pressies from scratch such as hampers and soft toys. Today I started to make a pig from a pair of pink striped socks. I'm so excited about making these little things, it's hard on the hands mind, and I have to have frequent stops but it's so rewarding.

I would love to be able to go back to the active, hard working person I used to be; someone who never had pain, who slept without prescription drugs and never worried about getting an infection 'cos she could just take penicillin! BUT I now have a more tolerant attitude and take a more measured approach to life. I live life in the slow lane, sure, but it means I can appreciate what I have. Pros and cons to everything, that's how I see it.

For now I'm happy. I laugh and smile a lot. But then I'm lucky, I have someone who loves and supports me, a good GP and Rheumy and three fab dogs who keep me going. Oh and I have an almost completed pink pig and a ragged sock monkey sitting in front of me! I may not have my health, I don't have very much money, but I'm rich in other ways :)

Ramble much...oh yes

CydneyX
 

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Hi everyone hope you are all well.

I have had to "retire" early. Love being with my two GSD's they and hubby loves of my life.

Managed to travel to Berwick and back in one day which was an achievement...but I did pay for it for a full two weeks, but what the heck I say.

I also now enjoy planning our back garden with higher access for plants due to neck and spinal problems as well. I love to listen to the birds signing in the morning and evening.
 

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Discussion Starter · #15 ·
Hi Everyone!
I hope you are all having a great weekend. Sorry I wasn't around this past week...family emergancy that caused me to be out of town, and then catching up at home and work. Anything new happening???? I woke up this morning with no pain! Swollen fingers and hands, a small headache but I'll take it. We took the boys to SeaWorld yesterday and I was expecting misery this morning. But NO. So it's a good day. :) I hope you are all having a good day too.
 

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mea
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I don't worry over the small stuff anymore.I've pretty much learned to take life as it comes,one day at a time with hope and be thankful for even the smallest pleasure.
 

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I like this thread... I think I already appreciate all that I have, as I lost a child many years ago.. that certainly makes life difficult and unpredictable but teaches you to hold those you have very very close to you; they are so precious, it also makes me think I can survive almost anything now emotionally; MCTD has still made me re-evaluate where I am,once again and I have stopped doing a stressful job and started training in something that I am very nervous but excited about. It has also reinforced how much I love those around me and as ever take great pleasure in the simple day to day things I do and the very lovely part of the world I live. I am glad to be reminded often of the very good parts of my day...so when it gets tough I can dig deep and get to the better part again... :) Not that it doesn't frustrate me, I have still to learn patience!!:lol:
Claire X
 

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Well there are three things I want to achieve, get to the top of Brent knoll hill (which I have done - from half way up) its pretty steep. Was well chuffed with myself. Almost made it to the top of crooks peak one day I will, and the last one is Glastonbury tor (this is my aim for 2010).

I have acheived my Assessors award and three days of the BVNA congress (lots of lectures :eek:).

I find I am more tollerant of others and get frustrated when people get shirty cos someone is ill... we all should walk a mile in each others shoes. There are still things I would like to achieve one is pet bereavement counsellor (there is a course for that. Maybe that is something for 2010 (I am also going to go looking for my brain it has sprouted legs and walked off somewhere by its self :lol:).

Claire xx
 

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:)I enjoy spending time with my granddaughters! Spent this week-end celebrating Aubrie 7th birthday at a Holiday Inn with a waterpark. I had a blast! So did they! Wish I had my camera when they came out of the waterslide chute, priceless moment! (I could hear her coming down the chute, laughing and screaming!) Great idea for a post! Cathy
 
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