View Full Version : Postive stories please!!

tiggerlishus - Heidi
05-05-2010, 12:05 PM
Hay everyone long time no talk!!!
sorry for the silience but i'm back and with postive things to tell you and a question to ask!!!
i'll start with the good new as i don't know about anyone else but i love hearing good news!
nearly 7 weeks ago lovely normski gave me her dog bolt a cross labby with collie one year old and full of fun!!! ( pics to come!) which at the time i thoguht was great he'll get me out for bit of exercise and keep me company so i won't worry so much about being single! then almost a week later after a very strenous hospital appointment where they mention putting on chemo drugs or drugs that stop your body from fighting cancer and really over loaded the brain i went to my local pub to talk to my friend and landylady of the pub and have a vodka when she looked over my shoulder and asked this young man if he wanted another drink when he responded no i would like to talk this lady! well i turned round in shock he wass absoutly gorgeous i couldn't believe it to big with i thoguht it must of been a joke as he was in with work mates i was expecting it to be who can chat up fatest bird in pub or something but we got to talking names his is dan ( pics to come!) , exchanged numbers and he asked me if he could take me out for dinner!! well the next night we went for pizza and haven't look back since!! he has just been great he makes me laugh, smile and makes me feel very special everyday!! we go for walks with bolt and picnics when its nice weather, we've met each other parents and get along fabulously, when i'm ill he looks after me cooks me dinner and such like comes to as many hospital appoints as he can with work and all !! i can truely say i'm the happiest i have ever been everything just feels right comfortable just perfeck!!

now for my question it for dan he is awfully worried about the lupus specially the life expectancy so i was hoping that you all could tell some postive stories of what you have accomplished whilst having lupus for him to read

thanks all very much appriatated!! hope you are ok and as promised here are some pics x

05-05-2010, 06:47 PM
OOOO Dan is quite a handsome guy! Good thing you are across the "pond" or I'd have to come pinch his cheeks. :)

05-05-2010, 07:52 PM
What a wonderful love story!!! You can almost hear the happy in your post and I'm still smiling. My advice just take each day as it comes, keep smiling and focus on the love you've got and everything is going to be perfect!

tiggerlishus - Heidi
05-05-2010, 11:13 PM
thanks guys i am happier than a pig in muck!! just wanted to reasure him there are people out there who have been diagnosed for year and thou it maybe rough ride i ain't going anywhere anytime soon!! i more than most understand life can be cut short quickly (this weekend is the 3 year anniversary of my dads death and he was hit by a drunk driver!) just wanted to show dan some postive stories cause all he has heard so far is bad about lupus!!

05-06-2010, 01:47 AM
Congratulations on finding a good, understanding guy!

PS. I sent you a PM. Hope it helps you out!

05-06-2010, 06:19 AM
Congratulations! I'm so happy for you - he sounds like a fabulous guy!

As far as the life expectancy, that's one of the things I worried about most when I was first diagnosed in 2006. In fact, I nearly died then. What I have learned, however, is that most of the time it's untreated lupus with major organ involvement that is fatal. I didn't know I had lupus before I was diagnosed, I went into a flare that got worse and worse until it was nearly too late. AND I refused to listen to my doctor at that time too - I hate hospitals and refused to go. Not just one time, but FOUR times within a two week period. Stupid!! YOU aren't doing any of that! Keep up with your dr appts, take your meds, get lots of rest, keep stress to a minimum, eat a balanced diet, take good care of yourself, and although there will be flares along the way, some worse than others, there are also many good periods when you'll feel great. Of course it's not always that easy, I don't mean to say that's all there is to it. But it's also not the terrifying, paralyzing "thing" I imagined either. Yeah, people die of lupus. And even one death from lupus is too many. But thankfully there are more people who live with it for many years.

The other thing I learned recently is that although I have lupus, it absolutely does not mean that I will die of lupus. Anything can happen to any one of us at any time. (Car accident, unrelated illness, etc). Life holds no guarantees; what we need to do is enjoy every single minute we can, not looking back and not worrying about tomorrow. Just be present right here, right now, and let go of the rest.

I have been going to lupus support groups for over a year now. I am 42 and I am by far the youngest in the group. There are many people in their 60's, 70's, and even 80's. They are living normal life spans, and well enough to get out of the house and go to an evening meeting. I know many people in that age range WITHOUT lupus who can't go out and go to evening meetings!!!

05-06-2010, 08:57 AM
B4 I was Dx w/ Lupus I had Lost a baby in pregnancy at 17 then had symptoms I didnt know they were symptoms though. Then At 19 we got pregnent again and I lost my baby again. Lupus Hit me HARD! I spent months in and out of the hospital. Extremly depressed went from Basketball superstar to sores on my fingers, stroke, kidnet failure, fluid around my lungs and so on. And Docters telling me I was a drug seeker! My 20th trip in three months to just an emergency room. My Grams showed up from out of town. Said "have you fools checked her for Lupus" ( i Love grams) Mind you the same ones who told me it was in my head! I had no clue what Lupus was by the way! Sure enough a few positve test to lead in a direction anyway. Atleast to have them really look at me and find out at the time the stuff listed above! So massive steroids, chemo's, plaqunel,blablabla.. Crazy, scary, change! Life was unbarable. Those docters were talkng in the hallway and I over heard them say "she wont see 30".Then the research I read I believed them. Around age 25 I became very PROACTIVE in my life and Wellness not illness. I tryed pitty and woas me's for 8 yrs. And I didnt like or no that person. I m on a easier going chemo for my kidneys, I get every 8-12 months vrses 3. I changes my diet to what I call my Lupus diet. I listen to my body and what its telling me. And most of all walk and Talk and Live my freaking life Happy. April 16th I turned 30.... And I was proud to wake up that morning not proving them wrong but proving it to myself! I havent had an actual Lupus flare in one year.

05-06-2010, 11:43 AM
Hey Angel,
Congratualtions on finding such a great guy! I hope that you continue to be happy and have a great life together!
This is for Dan:
I'm 52 and we've been happily married for over 33 years. I wasn't diagnosed with my AI issues until the last 3 years, but I think that I've had mild symptoms of them since I was a teen. None of it stopped me from leading a happy, full life. We've raised 5 wonderful children and now have 3 grandsons. My hubby is an Air Force Officer, so our lives have been a great adventure. We've lived in 6 different US states and I've done different jobs (both professional and volunteer) in each state.

Now that the kids are all adults, my hubby was accepted into a program in which the AF is paying for him to work on his PHD. I gave up my teaching job, which I loved, but it was getting to be very hard on my health. We've moved to the California coast, and we are soo enjoying our life together now. We love to travel, too and we've been doing it more and more. We traveled a lot two summers ago, with me in a wheelchair. Jeff happily pushed me all over the place. We were in New Hampshire first, and then spent a week in NYC with our oldest daughter. After that, we went to Hawaii and then to Japan on a military trip. We had so much fun! Tokyo is wonderful!

I sometimes feel guilty because I have to take things slowly and I slow my very athletic husband down so much. He has assured me that he doesn't mind at all. As I recently posted, I was recently elected 2nd VP of the NPS Officers' Spouses' Club. We're very involved in going to military dinners, formals and other activities. We go, and I happily dance (a bit slowly) in my husband's arms. We'll be traveling to Santorini, Greece in a few weeks with our oldest daughter. She'll be speaking at a neurobiology conference there, and we'll be there as "proud parents". I'm going to PT faithfully so that I can gain some strength for exploring those Greek archaeological sites.

For me, life is good. I have to visit docs more than I ever have before, and I have to take quite a few meds, which I could have never dreamed of years ago. I still do most of the fun things that I want to do, I just do them quite a bit more slowly than I used to do them.

Dan, I hope that you and Angel have a wonderful life together, as Jeff and I have. Take good care of our Angel.
Hugs to both of you,

tiggerlishus - Heidi
05-06-2010, 01:03 PM
hay thanks guys specially you marla it means alot to read great stories i think not only reading good stories will help dan but i think its a good pick me up for us when we are feeling down!!

so i hope they keep comnig dan and i are hopefully gonig away to alton towers ( huge them park over here in uk!) tomorrow for weekend in memory of my dads life so if i don't respond straight away that will be why thou we are both ill with cold and cough so it might not happen yet!!

05-06-2010, 03:03 PM
I have had lupus since my early 30's, maybe even before that. It's been at least 30 years I have had it, maybe even more. So a person can live a long life with it.

05-06-2010, 07:35 PM
Hey Heidi,
I must apologize. I somehow mixed you up with Angel Oliver. I'm so sorry - brain fog, I guess.
Now with the correct name - Dan, take good care of our Heidi.

tiggerlishus - Heidi
05-07-2010, 02:28 AM
Hey Heidi,
I must apologize. I somehow mixed you up with Angel Oliver. I'm so sorry - brain fog, I guess.
Now with the correct name - Dan, take good care of our Heidi.

it ok marla i thoguht as much , that or you thoguht i was a angel i am quite chuffed witht either lol xxx

05-07-2010, 09:53 AM
This is Nonna and I'm 62 and going strong. I'm more active now that I know than I was during the great unknown. I'm not worried so neither should you

05-08-2010, 11:11 PM
Okay well here goes....still going strong 17 years and counting. Diagnosed at 17, still here kicking at 34(35 next month). I have been "medically controlled" for many years, working full time leading a "normal" life relatively pain free for years now. I had it rough the first few years, got put on disability at 19 told by my doctors I would never work or lead a "normal" life...yet here I am. I take two pills a day to keep things even kill for me. I never thought I would get here, but I have. I even got asked by my kidney doc the other day if I was sure I had lupus because my labs looked so good! It can get better! Hugs to you and your guy, you look great together!