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katinar
12-12-2007, 09:53 PM
I have been diagnosed with SLE for 28 years although much more likely had first flare at 19 so more like 40 years. I am in awe when I read stories of people on this and other boards. Both in awe of all the pain and suffering we have all gone through and also the amazing strength and perseverance I hear through the writing. Every day is a gift and a challenge. I have made peace with the disease(as have many others) and don't spend energy uselessly fighting it, as energy is the precious resource I guard zealously. I want to thank whatever powers there are in the universe for all that I have in my life. While I wouldn't have chosen this disease (I always think maybe hemorrhoids HA!) I know I would not spiritually and emotionally be where I am today without it. In faith and fellowship whatever one's faith may be
katinar

Saysusie
12-13-2007, 03:04 PM
Hi Katinar :lol:
I think that many of us will agree with you wholeheartedly. Although we would not ask for the disease, it has taught us how to be grateful for the many small miracles that surround us every day, it has taught us to take notice of the wonders and beauty that abound and it has taught us to be thankful for all that is good in our lives.
See my motto below.........................

Peace and Blessings
Saysusie

hatlady
12-26-2007, 12:52 PM
Hi Katinar and welcome to our group!

I agree, while I'd never have chosen lupus, this condition has given me many gifts - the gift of understanding when a friend says "My FMS is so bad today, I could cry..." or of how some days are good, some bad. I've learned to just sit and watch the roses grow on days when leaning over to smell them would be too hard. I'm blessed that my home computer office has a window out to a wonderful yard filled with birds, squirrels and trees. I'm blessed to have friends that care, that help me when I need it. And who laugh with me often.

Cdn Grl
10-18-2008, 06:38 AM
Katinar....what you wrote is so very true.
But in my case, I have always been very conflicted over acceptance of the disease and denying it outright.
Like yourself, my symptons started around that age, maybe a bit earlier.
I was in University. By my third year, I could barely read, the words were just swirling off the page. I was sooo tired. And confused...and an emotional basket-case. I was tested for Mono....negative. I was tested for Epstein Barr...positive. By then I had to drop out of school. Just couldn't study anymore. I rested but by then my immune system was toast. Next came the allergies that were uncontrollable, sinus infections that required surgery to clear. Swelling that made it difficult to walk. Finally after must testing...Lupus was the culprit.
10 years ago I was diagnosed with Thyroid Cancer and 7 weeks ago I had to have a Hysterectomy. I wonder if it is all related. If the ravages of Lupus have ruined my body and now I'm a candidate for everything else????
You never know what will happen next, but god always gives me the strength to recover. Faith is sometimes all that you have. I have to cling to it.
But in spite of everything, Lupus has taught me a few things:
1. Try to simplify your life as much as you can (we moved into a very small bungalow-no stairs)
2. To be grateful for the people who love and care for you (take their help when they offer it)
3. Stuff is just stuff. The more stuff you buy...the more you have to put away and dust!. Walk lightly on the earth.
*I know my post is a little long-winded and this not a post on symptoms but I just needed to get all this out. Thanks for listening :D

KathyW1958
10-18-2008, 07:48 AM
Hi Katinar,
I agree with you a lot. I have had Lupus they believe since the age of 5 years old, however I did not get diagnosed until I was 36 years old. It is a hard illness to live with, but I look at it this way, I did not ask for this disease, but since I have to have it, I will try to do the best that I can to live as comfortable as possible. I just try to enjoy my life. I may have Lupus, but the Lupus does not define who I am as a person. I believe very much in God and I believe that what comes after this life is beautiful where nobody is sick. I always try to help people as much as I can and I try to listen to others even the folks that don't have Lupus, but have other illnesses that afflict them. I don't know what else to say.

Hugs,
Kathy

preshad
01-28-2009, 10:55 PM
I have been diagnosed with SLE for 28 years although much more likely had first flare at 19 so more like 40 years. I am in awe when I read stories of people on this and other boards. Both in awe of all the pain and suffering we have all gone through and also the amazing strength and perseverance I hear through the writing. Every day is a gift and a challenge. I have made peace with the disease(as have many others) and don't spend energy uselessly fighting it, as energy is the precious resource I guard zealously. I want to thank whatever powers there are in the universe for all that I have in my life. While I wouldn't have chosen this disease (I always think maybe hemorrhoids HA!) I know I would not spiritually and emotionally be where I am today without it. In faith and fellowship whatever one's faith may be
katinar

preshad
01-28-2009, 11:33 PM
I have been diagnosed for 39 years. Lke everyone else, there has been much pain along the way, many necassary lifestyle changes, dissappointments, and tyrumphs, failures, and accomplishments. I never could have made it this far without my strong faith in God. I was a Registered Nurse, and had to give it up because of lupus. I developed central nervous complications, and was forced to go on Social Security disability, but through it all, God has helped me to retain my sense of humor. I also have survived through a bout of stage "4" lymphoma. I have been cancer free now for 5 years, thanks to a grest doctor and a load of chemotherapy, and especially because it was God's will for me to survive. I Wrote a book about my experiences living with lupus, but will never be able to afford to publish it. Sometimes we wonder why we were put on this earth. I seem to have been given the talent to make people laugh. Maybe that is why God has kept me here through three strokes (cancer related) and four blood clots in my lungs(lupus related),two spinal surgeries, PHEW,-- I love to make my friends laugh when they are having a bad day. Laughing is good medicine for both of us. I'm still hanging in here. My lupus is still very active,but even though this old lady is growing weary,I am still amoung the living, soI I guess God isn't through with me yet.
Lupus has destroyed my life, but it has not destroyed my zeal for living. I am now age 67. I was diasgnosed in my late 20s. Old age is taking a toll now, but you young women with this disease can have a near normal life too, if you refuse to give in to Lupus, and ask God to help you. He did it for this old broad. He loves you, and he will give you a purpose too. You have to get determined to overcome lupus.You CAN DO IT! I did. So can you.
Love and good luck,
Preshad

Rastagirl
01-29-2009, 01:33 AM
Katinar, Saysusie, Hatlady, cdn girl, KathyW and Preshad...

Your beautiful posts have brought me to tears...They are all exactly how I feel....everything I have learned along the way with this disease.

For 27 years I've fought a tough fight with Lupus. I feel like it stole my life away from me at age 18, and took all my plans and dreams. I was 6 months out of High School, going to Court Reporting School and was hoping go to Law School. Instead, I spent the next 5 years in and out of the hospital battling for my life. I broke my back at age 20, during my first year of marriage. I spent that whole first year in a hospital bed in the dining room of our apartment with my husband as my nurse. (I have the best, most amazing husband in the world.) I have been on Social Security Disability since that time. I have had both of my hips replaced, my vocal cords are damaged, and my right wrist is collapsing. Happy times.

But along the way, I, too, have made my peace with Lupus....doesn't mean I don't hate it fiercely, I even get mad at it still. But, I too, am very careful of where I use my energy. As I worked through the stages of denial, grief, anger, etc. and spent some time with an excellent Therapist that had Lupus herself, I have learned how to live with this disease a little bit at a time. Over the years, I've figured out what works for me to keep me as healty as I possibly can.

I am here because I am a fighter and I will not let Lupus get me! You have to have a fighting spirit, a strong will to live. I also get my comfort in knowing that I have a future beyond this life with pain and suffering and a diseased body. A place in Heaven with Jesus. My faith is the #1 one thing that has gotten me through this. The Love and constant support of my family, especially my husband of 25 years, comes in a big second, and my Lupus Doctor, an Immunologist at OHSU, who has been my doctor now for 27 years (I've got great continuity of care that you just don't see today) is the third cornerstone in my life.

It hasn't all been bad. There has definitely been some good along the way, too. I am blessed to be the Mom of 2 beautiful children, a son, 16 and a daughter, 12. They are my joy in this life! I was told at 18 that I shouldn't try to have children. I cannot imagine my life without them. I am so glad I didn't listen.

I have also learned what is truly important in life, and how to treasure the little things....how to appreciate more fully....empathize oh, so sincerely. I know how to 'not' complain. I have learned what brings joy in my life, and I like to believe I have learned how to give that joy back.

I have lost all my friends along the way, and suffer the deep loneliness that those of us with Lupus have all endured and still do. The feeling of being left out of things...of no one that understands. But, I have learned what is important in a friend. And I have learned how to 'not' waste my words. I have learned how to love deeply the people that love me, and to appreciate them.

I try my best to live my life fully every day, with hope, and with purpose. And for anyone out there reading this that is new to Lupus, especially those young, in their teens and twenties, I want to give you hope and tell you not to give up. Fight this and stay strong. You can do it. And if you need encouragement, understanding, or an ear to listen to what you're going through or to answer your questions, come to this Forum and you will find it. There are some very special people here.

And, at this point, I must add a very warm Thank You to Saysusie for this amazing place that we can come to. This Forum that honors her beautiful daughter. I had nothing like this when I was diagnosed, and I could have used it so badly. Thank You for blessing us, Saysusie. :angelic: I am amazed, and saddened, by how many new members get on here every day from all over the world. My heart goes out to every single one of you....

I hope my story will bring hope to an aching heart out there and let you know you are not alone.

Fondly,

Lori :P

Saysusie
01-29-2009, 10:02 AM
Lori;
Your post was so beautiful and so filled with grace and insight. I hope that everyone who reads it can find a way to get joy back into their lives and to give joy to others.
Like you, I have lost many friends along this path of Lupus and I was especially struck by your notion of 'not wasting words'. I made a decision that I would only surround myself with people who are genuinely caring, giving, loving, and supportive. By doing so, I do not need to waste words like I did in the past when dealing with people who refused to understand, were not supportive, and who cared only for themselves.
I am so happy that this site has been helpful to you. When my daughter was ill, we searched and searched for a site where we could find information, comfort, understanding and support! We found nothing. So, I was determined to make this site one that offered all of those things to whomever needed it, in order to honor my sweet Lauri.
Please know that we are always here for you and we want only to help you in any way that you need.
Thank You For You Kind Words :D

Peace and Blessings
Saysusie

preshad
01-29-2009, 11:23 AM
I have been living with SLE for close to 30 years. After reading your posts on this site, it reminded me, that over the years, I have met many lupus women from around the world,via the internet. I am proud to say, several have turned out to be lasting friends for me. There is one common thread that connects us all with lupus. It is,we are determined lupus is not going to destroy us! After reading your posts, I have added you all to my "people I have been honored to meet" list. I praise God that lupus came to live with me, because it taught me a lot about my tenasity, and about what really is important in life. I never would have met the great courageous women I have if it hadn't been for having lupus myself. I have told my daughter, that the best way I saw God at work (for me), was when I was down, in pain, and feeling lonely and isolated because of lupus. Those were the times after much prayer, that I saw miracles happening. I allmost died several times. The fact that I am here talking to you all right now, is because of a series of miracles. I am nothing special. I am just loved by my Heavenly father.
I like to write. They taught me to rely on my faith, and trust in God's love for me, and that I am stronger than I had previously given myself credit for being.I have learned the importance of keeping daily laughter in my life, because laughter is the best medicine we can give ourselves.. I have learned to take things, one day at a time. I learned to set goals for myself daily, but to make them realistic(depending on the symptoms I was having) so in case lupus wouldn't allow me to reach them, I wouldn't end up depressed.
Do something nice for someone today. It will take you out of yourself, and you will feel much better.

One time a newly diagnosed young woman said to me," I am terrified this lupus is going to take my life." My answear to her was, "My dear, if you spend all of your time worryoing about dying, you will overlook the joys of living, and that would be very sad."
God bless you all. Remember you are a very IMPORTANT, STRONG person. I am proud to say that I have made the aquaintence of some more great lupus people
Till we meet again,
Preshad

Rastagirl
01-29-2009, 03:28 PM
Preshad,

I think I shall start a list just like that, "People I have been honored to meet.." and I'll put you on the list first. :D

Thank you for sharing your personal story, your struggle, and your wisdom. I, too, am nothing special. I am just loved by my Heavenly Father (hope you don't mind me borrowing that from you, it is beautiful), and my hope lies in knowing that He has a plan for me. A plan to give me Hope and a Future. "For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Through all my difficulties with this illness, I have been through every emotion, and spent quite some time very angry at God and angry at the world. After years of trying to understand why this had happened to me, I came to the point when I realized that I had two choices.....I could either be a very angry, bitter, hateful person that had no friends and had no hope, or I could choose to truly let God take over my life and use it for good. I could wake up every morning, thank Him that I am alive, and ask Him to help me through the day. I have chosen to be a kind, compassionate, gentle person that trusts God and looks forward to my future in Eternity with my loving Savior. He offers that to every single one of us.

I am thanking God today for bringing some new friends into my life via the Internet. (And by the way, Al Gore did not invent the Internet, God did!) :lol: This is answered prayer.....I have prayed many times for God to bring me friends, even just one. I was expecting the kind you can go out to lunch with, or go shopping with, or share a hug, but He had other plans. He brought me some that are just a few keystrokes away. And who knows, He may have it in His plans for me to meet some of you some day and share that hug.

Thank you for listening and caring. I am truly grateful.

God's Blessings to you all.........

Fondly,

Lori :P