View Full Version : What Lupus has given me... An essay.
05-11-2006, 10:38 PM
I know I spend a lot of time moaning, whining, and crying, about the stupid things this disease has done to me. The aches, the pains, the nausea, the headaches, the dizziness, the passing out, blah blah blah... But, I very rarely talk about the wonderful things that Lupus has given me. You might be thinking, "What is she talking about? Is she INSANE? Has the Lupus FINALLY started eating her brain?" To that I answer: "You shall soon see." "Well, DUH!" and "Quite possibly."
On July 15th, I will have been diagnosed for exactly one year. That's a little over two months from now. In the past 10 months, along with all the crapiness it has given me, I have gained a lot, and learned a lot as well... And I don't just mean how pronounce every drug known to man, and a resemblence to Karen Walker, either.
No, my friends, no. Lupus has given me a whole new appreciation for, well, everything. My talents, the people in my life, each day that passes... I have learned, (reluctantly) to slow down. To stop, once in a while, and smell the roses. To cherish and absorb every moment spent with the people I love... Because tomorrow may be too late.
If it weren't for Lupus, I may not really know who my REAL friends are. Nor, would I probably know of their limitless giving and support. In fact, some of them, I wouldn't know at all.
Without Lupus, I would have never realized exactly how much I can take... I still may not have... Who knows what the future holds? But, even when I have felt like I couldn't take much more, and I couldn't go on... Somehow, I have made it through... A lot of that has to do with those true friends that I was speaking of before.
Lupus has taught me to cherish the good days, as they are few, and far between at times. And has changed my definitions of words like good, happy, sad, scared, angry, energetic, tired...
So, though I complain about it... (A LOT!) For many things, I have to say: Thank you, Lupus, thank you!
05-12-2006, 04:37 AM
well said. Exactly.
05-12-2006, 08:14 AM
That was lovely and I think that most of us feel the same way. I, too, have learned to cherish every good day, to cherish my "TRUE" friends (who, like good days, are few and far between), and to cherish my loved ones. I also have learned to look at my life differently: although it has been fraught with illness and loss, it is still a life filled with love and surrounded by so many beautiful things. I have leaned my lessons through illness and loss and I am grateful for every moment that I have.
I am grateful, especially, for people like you (and everyone else in this forum) who so generously share your time and open up your hearts for others.
Thank You For The Beautiful Essay...and the wonderful reminder to be thankful and to cherish what is truly important!
Peace and Blessings
05-12-2006, 05:58 PM
You can now add to that list my utmost respect and admiration...you summed up beautifully what I feel everyday. Thank you!!!
05-13-2006, 07:47 AM
That was inspiring, and very well said. Thank you for sharing it.
I have been seeing a counselor for years, she's a great person and has helped me try to keep my crazy life in check. We've been working for years on me finding ways to reduce the stress in my life. When I got the lupus dx last month she said, "Now you HAVE to slow down and listen to what your body is telling you, it's not optional anymore."
I was really frustrated by that, but seeing it the way you do makes it a little easier to understand that maybe there is a bright side!
I OFTEN ENJOY READING YOUR POSTS BECAUSE THEY SAY SO MUCH OF WHAT I THINK AND FEEL IN A WAY THAT I COULD NOT BEGIN TO SAY THEM AND AS A SINGER/ MUSICIAN ALSO I CAN FEEL THE LYRICAL TONE TO YOUR WORDS. THEY ARE ALWAYS A BLESSING IN SOME WAY. THIS TIME I SHARED SOME OF WHAT YOU HAD TO SAY WITH ANOTHER LUPIE FRIEND OF MINE AND SHE SAID SHE COULD SO RELATE TO WHAT YOU WERE SAYING ALSO. WE ARE BLESSED TO BE ABLE TO SEE THINGS IN A WAY THAT OTHERS CAN NOT SEE. A VISION OF FRIENDSHIP, JOYS UNKNOWN TO OTHERS BECAUSE THEY CAN NOT RELATE TO THEM, AND PEACE THAT THEY WILL NEVER BEGIN TO UNDERSTAND. NOT BECAUSE THEY DON'T DESIRE TO UNDERSTAND ..... THEY CANNOT FEEL IT BECAUSE THEY DON'T SEE THE DEEP DESIRES THAT WE DO TO FEEL THE PASSIONS OF THIS LIFE. PURE AND UNRESTRAINED. THATS WHAT YOU HAVE SHOWN ME TO SHARE WITH MY FRIENDS. THANK YOU.
05-14-2006, 07:59 PM
I am inspired and happy to see someone look on the bright side instead of only the dark side. Why is it that we so often only can see the negative and forget the positive. I agree, thinking about it. I wish that I felt well and didn't struggle with the illness, but because of it I am sure I am a much deeper person and someone that feels for others more than I would if I were healthy and did not understand. Life is all about attitude. Any situation can be faced with courage and a smile if the attitude is right and you have decided that you will be fine and will face it.
05-15-2006, 11:59 AM
SS - that was wonderful. And so correct. My list-if it weren't for Lupus I probably wouldn't have the relationship with my son that I have. He is a total mama's boy. :) But life gets busy as we all know well, and without Lupus I suspect things would be moving faster. He turns 8 today! I have learned to enjoy each and every moment of each and every day. I can't go in the yard to play ball in the sun, but I can lay down and play one board game after another. And talk. He loves to talk and shares so much with me of himself during these games. He is such a funny little guy, always making me laugh. On the other hand, my dh works nights so doesn't have the chance to know him like I do. I am constantly telling him he needs to slow down and take the time. That he needs to really listen and he'll realize how funny, caring and inspiring he can be. Having been sick for years, and having a healthy dh, the differences in the two are glaring on some days on how we see things. Where I see a spilled drink on the carpet as something that happened while we were laughing too hard or playing, dh sees a mess and cleaning bills. I do realize it has to be cleaned up, I just don't worry as much about it or get so upset that it happened because all too soon he won't be there to make those messes or give me those all consuming hugs - and gently on my bad days. So I have Lupus to thank for allowing me the opportunity to see the good over the bad and take the time to slow down and really see the important things.
I had a glaring example this weekend that he is a child of a Lupie. A friend's daughter was over for the night and she asked about the rash on my face. Bry pipes up and says "duh that is from her lupus, don't you know what that is?" It's the most normal thing in the world for him, and that comes from having such an open and honest relationship with him. And for that I thank lupus wholeheartedly. :)
05-16-2006, 11:37 AM
Thanks guys! :):):):)
I really think that this site and the people on it helped me to gain this perspective! (Although, sometimes just when I feel like I have accepted it, I start feeling really bad and I wonder if I AM actually accepting it)
So, thank you all! :) You've made it so much easier!
05-16-2006, 11:41 AM
SS (I really hope you don't mind if I shorten that, if you do then let me know and I'll make my cramping fingers type a few more letters, cause part of it is just me being lazy LOL) - I think you have come a long way in accepting the cards you have been dealt. We all have bad days where we do question whether we have actually accepted it fully, but mainly it's not the disease itself we are questioning I think, it's that particular symptom of the day. When something new or different pops up, we tend to get discouraged that we will ever get control on this thing and then a couple days later we think, wow I made it through another one. LOL That's my thinking anyway. ;) But I really do think YOU have come a very long way from when you first posted. You are definitely more open, upbeat and sound happier as well. :)
05-16-2006, 11:52 AM
Thanks! And no, I don't mind if you shorten it!! I TOTALLY understand!!! :):):):)
05-18-2006, 08:09 PM
Love this! I'm so much more laid back now that I have lupus, and I do love that!
05-22-2006, 02:29 PM
What a beautiful essay.
When I was first diagnosed, I went to see a Social Worker for a few visits. She kept asking "What GIFT is there in this diagnosis?" I just looked at her like she had 3 heads. GIFT?! You think this is a GIFT?!
Over time, with a lot of reading, a lot of thinking I have learned, as you have, there IS a gift in what we have been given. I've met new friends, I've sent some old friends by the wayside as they didn't understand - or WANT to understand - when I said "I can't today."
I've been given the gift of slowing down. In today's nutty world, taking it a bit slower than the rest is truly a gift. A blessing. I can sit for an hour on my porch and smell the sweet lilac. I can walk in my yard and see the flowers - even those pretty yellow ones that grow all over my lawn :roll: - and enjoy the moment.
Life can be so sweet, and I think we've each been given the gift of appreciating, more preciously, that sweetness.
On days when the brain isn't quite pulling out of the fog, or the pain is just so achingly THERE, or getting out of bed is the hardest task I can handle, I still have people who love me. For what I am, NOW, not for what I was. That is the most wonderful gift.
Thank you dear SoleSinger for this thread!
05-23-2006, 08:04 AM
I have learnt to look at the positive side of Lupus, I think you have to reach acceptance first.
Lupus forced me to give up nursing after 33 years--a job I loved. Now I am free of all the stress, it took me 12 months to get over that but now I have started to enjoy retirement.
I sit and crochet handbags during the week. At weekends through the summer months hubby and i take off to steam events, carnivals etc and sell toys, costume jewellery and my bags. I rely on hubby to do all preparation but once there. I really enjoy it. We have a caravan and spend stress free weekends in the country. During the week I am very tired and have to rest and recharge but thats fine. At least I have a bit of life again.
My mobility and balance is deteriorating but as long as I can cope and we both enjoy it, we will carry on.
06-02-2006, 05:28 PM
You and your hubby are living my dream retired life. I would love to travel from state to state in a motor home/trailer (or caravan as you call it) and sell my crafts. That sounds like such a wonderful way to see new thing, meet new people, enjoy your craft and be with your husband.
You have the right attitude about how to continue to be productive and happy in spite of what Lupus puts us through. I wish you the very best and your story made me smile :lol:
Peace and Blessings
06-24-2006, 10:08 AM
Dear SS. I loved your essay! Having lupus, and reading your post sort of 'validated' the feelings I've had for a while. To make it short, I've always considered myself to be someone 'simple' compared to most people I know. (I refused to get caught up in their competitive rat race). My kids are involved in extra-curricular activities, but limited. I am truly happy with just this....knowing that my family is safe and healthy, good company and conversation with laughter. I buy something when I need it, not just to 'have'. I don't equate status with stuff. Basically, I always felt almost sorry for people who lived their lives all tied up in knots because they felt like they had to keep up w/ the Jones' and their kids have to be involved in every activity that's ever offered.
Lupus, and like I said, your positive post, helped reassure me that things are so much more appreciated when youhave to take a step back and realign your priorities. It's a very peaceful feeling.
06-25-2006, 05:25 PM
SS- I love this post! I often feel like a freak when I explain that Lupus is God's gift to me. Not only have I learned to slow down and appreaciate life, I have learned all about myself. I now know what is going on with my body. Lupus taught me to listen to my body, my intiution, and my soul. I've learned to LOVE myself!!! Meaning I have learned to eliminate all negative elements out of my life. Stress is a huge trigger for me, so stressful people had to GO! I also have deeper stronger faith. I have seen miracle after miracle. The doctors told me that I may not walk for a year, and I walked a month later. The doctors told me that I will not be able to work a full day, I worked a job and went to school full time.(Of course naps came in handy!) The doctors told me that I would be on prednoise for the rest of my life, I was off (80 mg)and better in a year. I see so many of my other 20 something friends stressed out and totally mistreating their bodies. Because of Lupus, I love myself to much to put any additional stress. I can go on and on about the wonderful lessons that I have learned. It is a very tough disease but it I can say that I have seen a positive overall change in my life since been diagnosed 3 1/2 years ago!
06-25-2006, 08:30 PM
SS that was the best. I cried when I read that. You have such a wonderful way of putting things into perspective. I never thought of Lupus as a gift.
Thanks for your openness.