View Full Version : Need to Talk About Isolation
My name is Rob, and I was diagnosed with SLE in 2004. I'd like to share with you something that happened to me, and that I have never talked about with anyone.
I was 36 when I found out I have Lupus. I was a happy, newly successful small business owner, and I was engaged to my girlfriend of 6 years, her name was Lynn. We were really happy together, and after having gone through a divorce in my mid 20's, I thought I had finally found the right lady. Well, after the diagnosis, things changed. Her parents, whom I'd always gotten along with, and liked very much, suddenly could not find the time to talk to me, and I was no longer invited to family get togethers. So I sat down with Lynn, and asked her what the heck was wrong with them. She said that I was what was wrong. They said that Lupus was just some B.S. disease that lazy people use to mooch off the people around them. She said she knew Lupus was real, and that she wanted to cancel our upcoming wedding, and break up with me. To say I was shocked would be an understatement. In desperation, I got out her wedding ring that had just been made, and showed it to her. I told her I will survive Lupus, and we have a very bright future ahead of us. She said - "How can I have a future with some guy that's just going to be dead in a couple of years".
That was the worst thing anyone has ever said to me. I loved her with all my heart, always encouraged her when she was down, always told her she was the kindest, most beautiful woman I had ever known. So, fast forward a couple of years, I sold my business and house, moved back to my childhood home in Maine, am on full disability, and do my best to manage my disease. But something has has caused profound changes in my personality. I was an extrovert, confident. I did alot of public speaking, and was very active and engaged with my friends, and the community. Now, I don't communicate with anyone, I'm actually afraid to answer the phone. I reject all efforts of people around me to go places, do things, or meet people. I rarely leave the house. I can't look people in the eye anymore. I was a fit, decent looking guy, and now I don't care what I look like. I keep my shades down and don't answer the door when somebody shows up.
I had seemingly endless reserves of confidence, and loved being around people. I wish, I hope, that I can get back even just a little bit of that. Has anyone here experienced this urgent need for isolation? And if so, how do you deal with it?
Thanks for letting me bend your ear for a bit,
02-14-2008, 07:14 PM
I think I know how you feel but I don't quite know if I help. Since my diagnosis of SLE last January, I have made no attempts at making new friends. I actually avoid talking to old friends especially those who don't know about the diagnosis. I used to be really extroverted but now I really avoid going to places where I might run into somebody I know.
I've started going to therapy and she has helped me alot with recognizing that I am going through stages of grief about having lupus and how it has changed how I view myself and my future and how that has changed the way I relate to people.
I'm still trying to figure it out too but I'll stick around and tell you if I have any breakthroughs.
02-14-2008, 07:40 PM
Wow, that was raw. I felt her words and they stung. I can only begin to imagine what it truly felt like to you. I am sorry. Some people, as I shake my head. I will reserve my opinion...
I am sorry Rob, you didn't deserve that nor does anyone from any person, lover, friend, family and etc...
Living in isolation. I call it being noncommited to me, to my life. Sometimes it seems easier to become a recluse. I have to ask who do we make it easier for? In reality it is harder on us. Loneliness is death of a spirit. A death of our self concept...such as you seem to be experiencing. Impaired self concept, lacking your confidence. Rob, it is in there...you don't have to hope or wish, you just have to find you again.
Are of you of faith, Sunday church could be a start to open the door to yourself you had closed.
Have you dropped your grooming to the minumum? Start with a shave and new haircut perhaps?
Get ready for the day when rising, shower, clean clothes...walk the eighborhood blocks, drive to the pet store? A dog to walk perhaps for company is a start to greet people and to say Hi, how's it going....
Open one blind at a time...
Call someone who cares but you shut out...Say, hey I am ready for the...movie, the burger, the..you fill in the blank...
Are you on anti-depressants?
Are you ashamed that you have Lupus? Do you think you are not worthy anymore? Just thoughts to ponder, to find out why you pulled into the tortoise shell....How long has it been since you crawled in?
Me, I reach out, I call family when I feel like I've secluded myself too long. I have been known to hide out for a month without venturing off my porch. Me, afraid of the sun, afraid to exercise, afraid to cause a FLAIR, afraid to incite more pain, afraid I am too fat, always waiting for tomorrow as if I don't have a disease, as if it was a cold...thinking when I get well I will do, this and this and that. Maybe this is as good as it will get. Ah, many things that keeps me under the shell...
Reality, we have a disease(s). It is what it is. Life doesn't happened to anyone, sick or not, we have to make it happen...Make it happen for you Rob. Keep the human contact...Cyberspace is wonderful, but we have to know it can't be our only contact with the world. We need to hear real laughs, touch an arm while talking, see the color of ones eyes, watching the pupils dilate with excitement...
I can give you more ideas, but do tell what you use to like or what you want to try..maybe I can give you the push, or perhaps a shove in the right direction...
Bend our ear, we don't mind...
Hoping you will take on the day tomorrow.
02-14-2008, 08:22 PM
Rob, I can't tell you how sorry I am that you were treated so poorly by someone who meant so much to you. Cruel...unnecessary...
I'm not sure what kind of support you have where you live. I have a local support group here, and it's become so incredibly important to me Everyone in my group has experienced the isolation of this disease at one time or another. It's so easy to just withdraw. I understand how you feel. I'm still working part time, but even at work it's simplest just to keep to myself. I don't want to talk about my illness...no one really 'gets it.' I can't do what I used to do and I don't see those I used to see. But, it's important to keep connected. A support group can help you do that. Oluwa had other great suggestions. Don't sell yourself short, Rob. You have worth as a person and will find those out there who will understand. Until then, we're here for you.
02-14-2008, 11:26 PM
My heart goes out to you. Your story brought tears to my eyes, i think you're so strong for being able to come out of a situation like that. Absolutely no one deserves to go through what you went through. I cannot even fathom how much that could hurt. You are a wonderful person and deserve so much better in life. Having lupus is bad enough, you shouldn't have to go through what you did. There is support out there, and you deserve to find it, whether it be in here, or among your friends.
It's easy to push away those around us. I do it cause i feel that they can't understand. They don't know what i'm going through, how could they even begin to sympathize? There are times where i force myself to go out, and by the end of the night, i'm glad i did. it's just making that initial step out, thats so difficult. I feel you have the strength inside you to do such.
Wishing you the very best, and hope you find what you need and truly deserve,
02-15-2008, 02:20 AM
I too want to say how sorry I am you had to go through that...the only positive I see is that you found out what kind of person she was before you were married. You do deserve to have someone who will love you, no matter what! I know there are good people out there who can "deal", my husband is one of them, so keep the faith, you'll find someone wonderful!
My opinion; I think you are very depressed, I know this kind of depression. I went through this, not with my diagnosis of Lupus, but after several miscarriages. I turned the phone off, pulled the curtains shut and stayed in bed for days. The thing that got me back on my feet was my mother. She can really drive me nuts but she would just show up in the middle of the day, turn the ringer on, open all the windows and if she had to, DRAG me out of bed! I was furious, all I wanted to do was stay in my "cave" and be left alone but she just kept saying, "this isn't normal, get up and live your life!" With this disease it can be hard to get up and get moving (I know this too) but just try to do a little at a time, when you feel up to it, just baby steps. :)
Someone else mentioned faith, I am one of Jehovah's Witnesses and if you'd like I can arrange for someone to meet you at your home, on your schedule to do a free home Bible study, if you'd like. Even if you would just like someone to talk to, we are always happy to help however we can. I'm not "pushing" anything on you and if you already have a faith or if you can find a support group in your area I think that would do wonders for you. Maybe even a hobby, anything to get you in contact with other people is a positive step.
Don't get me wrong, I have days when I still hide in my cave but I also recognize that I need to be part of society for my own sake. My faith is what sustains me, if gives me a joy that no disease or person can take away, it also gives me hope for the future and I am so looking forward to it!
I really hope that you can find your way to be happy again, like I said, just small steps, you'll get there! :)
My offer to send one of Jehovah's Witnesses your way is sincere, if you think this is somthing you'd like to do please let me know, I'd be happy to help.
02-15-2008, 10:44 AM
I am a firm believer in the "all things happen for a reason" philosophy. Some people call that kind of thinking "crazy." I tend to think it helps me keep my sanity. In your case, I truly believe the "big guy upstairs," the "powers that be" or whatever or whomever you believe in, was looking out for you. Although what you have gone through has been extraordinarily painful, you are truly blessed. This woman and her family were exposed for who they really are. Thank Goodness you saw their true essence before you married into the family. Learning to live with lupus is a process that must begin inside you. In order to find the love and support you seek, you must be willing to step out and seek it. I am proud of you for finding the courage to join this forum.
If you were an excellent public speaker and businessperson, confident and successful, then you still are. Don't let lupus define you. If you are having a bad day, honor that and rest and take care of yourself. When you feel better, take care of yourself by grabbing hold of the life you now have. Do something with it. Don't focus on what was. You deserve better. Seek and you shall find.
I wish you health and happiness today and every day.
02-15-2008, 11:06 AM
Wow, I don't even know what to say. I can't believe some people can be so heartless! Consider yourself lucky for getting away from those people. You deserve better!!!
But that is a horrible experience to go through, and it is understandable that you are depressed. Like others said, just try to take things one day at a time. You don't have to stop living because of lupus!! You just have to make some changes, that's all!
Best of luck to you, and please keep posting...I'm sure it will make you feel better.
Thank you all so much for your responses , and for caring. The logical side of me knows I am much better off without her, but the emotional side hasn't caught up with the logic yet. I've read all your responses multiple times, and I'll try to answer some of your questions. As far as Religion is concerned, I'm an agnostic. I was raised Methodist, but I find that I honestly don't believe in any sort of religious faith. I have wanted to believe many, many times, but it's just not there. Depression. I've been diagnosed with depression on more than one occasion. I know I am suffering with depression now. I think a psychologist or councelor could help me, but my self-imposed isolation has kept me from seeing anyone. My first step is talking here, maybe a councelor could be the 2nd step. Some good things I have going are my pets. I have three cats, and they bring me much happiness. I also have no lack of hobbies. Many people would say I have too many hobbies, oh well. The best thing I have working in my favor is my location. I moved back to my small hometown in Maine after having lived 20 years out west. It's familiar, safe territory, and I'm only a few miles from my parents, and my two sisters. I really want to open up to my family, but I don't know how. There are many people still here who I grew up with, and I want very much to re-connect with some old high-school friends. I have to stop hiding. Thank you all again for your responses, and support. I feel comfortable talking here, so I guess thats a positive 1st step.
02-15-2008, 01:06 PM
BEING A GUY WE NEVER EXPECT THAT LUPUS WOULD GET TO US ......
LIKE MOST GUYS I TOO THOUGHT THAT LUPUS WAS A FEMALE DISEASE TILL I GOT BOTH SLE AND DISCOID LUPUS.
IT SOUNDS LIKE YOUR GIRL SPOKE WHEN SHE TOO WAS IN SHOCK FROM YOUR DIAGNOSIS...AS YOU WERE TOO.
I KNOW IT MUST HAVE HURT BUT..... THAT MAY BE HER WAY OF COVERING UP HER FEELINGS AND HER PAIN AS WELL !!!!
MAYBE YOU SHOULD HAVE HER COME TO THE SITE AND SEE THAT LUPUS IS NOT A DEATH SENTENCE.
ACTUALLY SOME DO NOT EVEN ENJOY THERE LIVES HALF AS MUCH AS THEY DO TILL AFTER THEY ARE DIAGNOSED.....
IT TAKES SOME TO GET SOMETHING AS POTENTIALLY FATAL AS LUPUS TO REALISE THAT THERE LIFE IS A GOOD ONE AND THAT THEY DO APPRECIATE WHAT THEY HAVE.
SO SINCE SHE IS THE LOVE OF YOUR LIFE.....
I AM SURE HER REPLY WAS SHOCKING TO YOU AND I AM POSOTIVE IT HURT....
BUT IF SHE LOVES YOU I AM ALSO SURE SHE DID NOT MEAN TO HURT YOU PURPOSELY....do you???
SO WHY NOT TAKE THIS WOMAN AND SIT HER DOWN AND FIRST EXPLAIN THAT YOU TOO ARE SCARED AND THAT YOU NEED HER ON YOUR SIDE MORE THAN EVER AT THIS TIME.
THAN EDUCATE HER ABOUT LUPUS AS I AM SURE THAT YOU AND HER KNOW NOTHING ABOUT IT AT THIS POINT AND YOUR HEADS ARE FILLED WITH A TON OF USELESS KNOWLEDGE AND YOU HAVE HEARD A MILLION HORROR STORIES.
SO TAKE HER WITH YOU TO THE DOCTORS AND BOTH OF YOU SHOULD ASK ANY QUESTIONS YOU MAY HAVE ABOUT WHAT TYPE OF LUPUS YOU HAVE, GET EVERYTHING OUT IN THE OPEN.....
LET HER HEAR WHAT YOU WILL BE DEALING WITH AND ARE DEALING WITH KNOWING THAT YOU MAY OR MAY NOT HAVE A POTENTIAL FATAL DISEASE.
BUT BEFORE YOU AND SHE JUMPS TO ANY CONCLUSIONS REMEMBER THAT IT IS POTENTIALLY FATAL ...
FATALITY IS NOT THE VERY END NOR IS IT IN EVERYBODY'S NEAR FUTURE WHO HAS LUPUS.
MOST PEOPLE WHO DO PASS FOM LUPUS PASS FROM COMPLICATION'S DUE TO LUPUS TREATMENT'S OR BY NOT TREATING THE DISEASE AT ALL.
BUT THERE ARE THOSE WHO DO PASS FROM IT......
BUT YOU ARE IN NO WAY GIVEN A DEATH SENTENCE BY HAVING THIS TERRIBLE DISEASE.
I AM LIVING PROOF THAT YOU CAN HAVE LUPUS AND HAVE IT BE COMPLICATED WITH A MYRIAD OF OTHER AUTO-IMMUNE PROBLEMS AND STILL LIVE MANY GOOD YEARS.
PLUS I AM DISABLD WITH PHYSICAL PROBLEMS IN MY SPINE AS WELL.
PLEASE READ MY POST BELOW THAT IS TITLED I AM BACK AND STILL ALIVE.
I HAVE HAD BOTH FORMS OF LUPUS NOW SINCE THE 80'S AND HAVE GOOD YEARS AND BAD ONES.....
BUT FOR THE MOST PART THEY HAVE BEEN OK !!!
SO RATHER THAN DEAL WITH WHAT YOUR GIRLFRIEND SAID AT FIRST AND LET IT BRING YOU DOWN ......
WHY NOT SIT HER DOWN AND EXPLAIN WHAT IS THE REAL DEAL WITH THIS DISEASE.
FIND OUT WHAT YOUR TREATMENT WILL BE , EXPLAIN IT TO HER, TELL HER HOW MUCH SHE IS PART OF YOUR FUTURE, TELL HER HOW MUCH SHE MEANS TO YOU AND THEN TELL HER HOW HER FIRST RE-ACTION HURT YOU AND HARD.
I AM SURE YOU WILL GET A DIFFERENCE RESPONSE THAN YOU GOT AT FIRST.....
HAVING WORKED AS A COUNSELOR I MUST TELL YOU THAT PEOPLE'S MINDS ARE BUILT TO KEEP THEM FROM PAIN AND WHAT YOU MAY HAVE HEARD WAS HER MIND PROTECTING HER FROM ANY EMOTIONAL PAIN.
I FIND IT HARD TO BELIEVE THAT A WOMAN WHO WAS TO BE YOUR WIFE COULD BE THAT IN-SENSITIVE AND WOULD SAY SOMETHING LIKE THAT KNOWING IT WILL HURT YOU DEEPLY AND MAY EVEN BREAK YOUR HEART AND END YOUR RELATIONSHIP.
I TEND TO THINK HER RESPONSE WAS YES FOOT IN MOUTH BUT WAS ALSO RIGHT OUT OF HER HEAD WITHOUT THINKING.....
SHE TOO IS SCARED AND WHAT YOU ARE BOTH SCARED OF MOSTLY IS THE FEAR OF THE UNKNOWN !!!!!
KNOWLEDGE HERE WOULD BE A HUGE HELP AND WOULD PROBALY PUT A LOT OF THINKING TO REST AND HAVE BOTH OF YOU REPLY ON FACTS AND RATHER THAN GETTING YOURSELVES UPSET OVER STORIES, RUMOR AND WHAT YA HEAR FROM THOSE WHO KNOW NOTHING ABOUT THIS DISEASE.
THIS IS A HARD TIME FOR BOTH OF YOU.....AND EVEN THOUGH YOU SEEMED TO TAKE THE NEWS BETTER THAN YOUR GIRL...
I AM SURE IT HIT YOU LIKE A TRUCK AND YOU WERE LOOKING FOR SOME SUPPORT ...right???
LOVE IS STRONG AND STRONGER THAN RUMOR OR HERE SAY......
WHAT IS MAINLY NEEDED HERE IS COMMINICATION BETWEEN YOU AND YOUR WOMAN !!!!
MAYBE BOTH OF YOU GOING TO A THERAPIST.....
IT WILL BE HELPFULL IN UNDERSTANDING YOUR DISEASE AND DEALING WITH ALL YOU WILL GO THROUGH AND HELP YOU TO UNDERSTAND WHY SHE RE-ACTED LIKE THAT AND HOW TO GET HER TO SEE YOU ARE NOT DYING AND HAVE A LONG LIFE AHEAD OF YOU...
IT'S AN UP-HILL FIGHT WHEN YOU HAVE ANY CONJOINED TISSUE DISEASE AND THERE WILL BE GOOD AND BAD DAYS BUT A LOT OF WHAT KIND OF DAYS THEY WILL BE IS UP TO YOU AND HOW YOU APPROACH THIS DISEASE.
IF YOU GO INTO THIS THINKING YOU ARE GOING TO DIE YOU ARE ALREADY GIVING UP BEFORE YOU EVEN KNOW THE EXTENT OF YOUR DISEASE.
YOU MAY LIVE FOR YEARS BEFORE YOU EVEN START TO FEEL THE EFFECTS OF HAVING IT.
YOU CAN BE OF GREAT HELP TO YOURSELF AND YOUR DOC BY TAKING VERY GOOD CARE OF YOURSELF AND BY THAT I MEAN PHYSICALLY MENTALLY AND SPIRITUALLY.
SO RATHER THAN DWEEL ON THE NEGATIVE AND I KNOW WHAT SHE SAID HURT...BUT I AM ALSO SURE THAT IF IN FACT SHE TRUELY LOVES YOU AS YOU SAY...
SHE IS NOW HURTING FOR HOW SHE REPLIED TO YOUR TELLING HER
THAT YOU IN FACT HAD LUPUS !!!!
LET'S NOT TAKE THE FOCUS OFF YOUR NEWLY DIAGNOSED DISEASE AND PUT IT ELSEWHERE...
LET'S KEEP THE FOCUS WHERE IT MUST BE ON YOUR LUPUS, AND THE REST WILL FALL INTO PLACE.
NEVER UNDER-ESTIMATE THE POWEROF A STRONG MIND AND THAT OF LOVE !!!!!
FEEL FREE TO PM ME. LEAVE A NUMBER AND I WILL CALL YOU, LEAVE A MESSAGE FOR ME AND I WILL ANSWER IT.
YOU ARE NOT ALONE MY FRIEND....FAR FROM IT !!!!
ALL WILL WORK OUT....
ALL YA NEED IS LOVE, COMMUNICATION, HONESTY AND A BELIEF IN YOURSELF !!!!!
HOPE TO HEAR GOOD THINGS FROM YA SOON ROB...
Thank you for taking the time to respond to my story. I'm afraid I didn't go into enough detail about what happened. There is alot of time, and many miles between her and I. I know she has a new guy. She made it very clear that she never wanted to talk to me again. My attempts to educate her about Lupus fell on deaf ears. She even changed her phone number. I'll never see or hear from her again. That being said, I'm going to take your advice and apply it to my parents and my two sisters. They are supportive, but they don't know much about Lupus other than the basics. It's a start anyway.
02-15-2008, 03:00 PM
Rob, my heart goes out to you - what a horrid, iinsensitive woman she is. I guess I also feel sorry for her new guy - he's getting no prize.
Reach out as you can, lean on us here, we'll listen, support and share.
I've learned that hard times test and teach us. That they bring us special gifts if only we take the time to listen to the lessons. And it does take time. As you rebuild connections in Maine, you'll find those gifts and the supports you need in frinedship and family.
My own experience is so different from yours - but I hope that we can all learn from each other. For now, all I can offer is a cyber hug...
02-15-2008, 03:18 PM
Maybe Buddhism is something you may want to read. Use it as a guide, words to ponder upon. I enjoy it. I can refer you to several reads...
Counselor is a good step outward when you are ready. Maybe anger swallowed you whole. Rejection in any form hurts.
Why are you afraid to the answer the phone, when did the introvert feeling start are some of the questions you have to ask of yourself. We ourselves hold the answers and maybe you need help to peel back the layers to find the answer.
I know times I hide is because I feel I have nothing to say. Oh, really I hear my Lupus family chuckle. I say I don't because I made my life so small, it circles around Lupus. And relocating from one coast to another...another door with bars. I am afraid to commit, because I may have to cancel..so I haven't developed any friendship in my new city.
When we don't experience joy often, we feel we have nothing to contribute.
For me, I used to entertain in the home, go out for entertainment, daily contacts with dear friends, weekday luncheons with colleagues, evening visits with immediate family, hiking..oh the list goes on. Now my outings are to the grocer, the dentist, plant nurseries, Lowes, the doctors and long distant phone calls....
I get lonesome, my husband travels...I know isolation creates more loneliness, loneliness drains us of our confidence...sometimes we don't look people in the eye because we somehow think it makes us disappear, they won't notice how we hurt or how we changed.
How do you feel about your physical appearance, Rob?
Have you read any books about Lupus? The Lupus Book by David Wallace, MD is a great start 3rd Edition..something you can share with your parents and sisters. Educate them. Leave it in the magazine rack in their bathrooms. Being sisters I am sure they can be compassionate, sometimes we just have to blurt things out. Are you afraid to show them vulnerability?
Do you exercise, stretch...for me that ignites a positive feelings, getting jazzed for the day...yoga, Kata, pilates, meditation...get the blood flowing..
Do you see a rheumatologist regularly?
Tell me what a day in your life is like...maybe me or someone can help you a bit till you seek out a counselor..
All Ye, All Ye Come Home Free (Hide n' Seek)
02-15-2008, 05:31 PM
I haven't posted in ages and ages but I do read the posts on a regular basis and feel a part of this "family". I just had to reply on this thread and let Rob know that he isn't as alone as he may think, as long as he has a computer he has all of us.
I have a suggestion ....Rob, since you were once a public speaker (a skill that is so hard for so many) and an outgoing sort of fellow maybe you could consider a new "career" as a lupus advocate. Heaven knows we could use all the recognition and support we can get.
There are so many of us out there who are undiagnosed but suffering symptoms and don't even know that they should be informing their doctors of their crazy unrelated problems. These people suffer in silence. Maybe if you were to speak at public health seminars or mother's groups or school assemblies or other such places you could reach and help others.
Just a thought.
Thinking of you.
02-16-2008, 06:32 PM
HEY ROB....I JUST READ YOU REPLY... :(
SORRY TO HEAR THAT HAPPENED BUT I GUESS IT WAS BETTER NOW THAN YOU KEPT YOUR HOPES UP AND THEN SHE TOLD YA.....
BUT I UNDERSTAND THAT DOESN;T MAKE YA FEEL BETTER BUT AT LEAST SHE WAS HONEST AND AT LEAST YOU CAN MOVE ON WITH YOUR LIFE.
I KNOW THIS IS ALL NEW TO YOU AND IT CAN BE QUITE FRIGHTENING.
THERE IS NOT MANY MEN WITH LUPUS AND SOMETIMES A MAN NEEDS ANOTHER GUY JUST LIKE A WOMAN NEEDS TO TALK TO ANOTHER WOMAN SOMETIMES......
I WANT YA TO KNOW YOU CAN ALWAYS PM ME AND LEAVE ME A EMAIL ADDRESS AND I WILL CONTACT YOU OR EVEN BETTER YET IF YA LEAVE ME YOUR PHONE NUMBER IN A PM I WILL CALL YA AND ANSWER ALL AND ANY QUESTIONS YOU MAY HAVE AND IF NOTHING ELSE GIVE IT TO YA FROM MALES POINT OF VIEW !!!!
I'M SURE YOU HAVE A MILLION QUESTIONS AND I HOPE I CAN ANSWER MOST AND THOSE IC AN NOT I'LL GETCHA THE ANSWERS TO !!!
BE STRONG MY FRIEND YOU ARE NOT ALONE !!!!
AND IF YA JUST WANNA BS..WE CAN DO THAT AS WELL !!!!
02-17-2008, 04:59 AM
It's a shame what a perception of an ailment can do. One thing I've learned about lupus is that it's never the same from person to person. Non of our fates are written in stone. The worst case is one of not ever being diagnosed. That happened to my mother and saddly she passed away when she was 65.
My sister was diagnosed that same year. She has been in remission for many years. Leads a very busy life. She works full time and has two boys who are teens now and have always been in sports, theater and music. She was also diagnosed a couple of years ago with having ceiliacs and had to eleminate all wheat products from her diet. She is my hero. She just keeps going no matter what.
I am in the process of being diagnosed for lupus. It's been going on for a year. I'm 48 yrs old.
As you know...stress can aggrivate lupus. You need to step outside yourself and take a good look at a person who needs taking care of and choose to take care of that person. You deserve that. You deserve to be at peace with yourself. Dont let some cold hearted ignorant people suck the life out of you.
I'm not going to preach or lecture. I have no room to talk lol. Just wanted you to know that things can be better. Be kind to yourself.
02-17-2008, 03:19 PM
I hope you realize that you have inherited a HUGE family by joining this site. Isn't everyone incredible? St. James has had a very tough road to travel and his wisdom is greatly valued by each and every one of us.
I think I would like to encourage you to allow yourself time to grieve the loss of so much at such an important time in your life. As others have said and me included, that I believe also all things happen for a reason. I have always believed that there are people in our lives that come to us for a reason, a season...and a precious few for a lifetime. For those who pass through our lives, I say "take the lessons learned and move up" and move on....it's not easy and it does take time. You'll do just fine, one day at a time.
So many have given you great advice. I want to ENCOURAGE you to wake up in the morning, take a shower, get dressed....and pick three things you need, want or have to do. Make sure you get some fresh air, go for a walk....(it means everything to me...to start out my day with a brisk walk in the morning). Most importantly, DO NOT STAY IN ISOLATION it is the single most terrible thing you can do to yourself. I say this with such a deep conviction, because like you, I was used to living in a high energy corporate life and on the go constantly, had tons of friends from work etc. I isolated and friends fell away and the crawling out of the pit of despair was too long and too hard.
I look back now and I have a responsibility to share with you and anyone else who will listen that isolation is the worst thing you can do.
When I crawled out of that deep depression, I began to realize that I had been a "human doing" all my life...and now I was blessed to have the opportunity to become a "human being"!!! HUGE LESSON, HUGE IN SO MANY WAYS. Remember, that all through life our circumstances will always change...but our hearts will forever remain unchanged. Be the confident man you've always been, meet and make new friends - start slow...and soon you'll know who you can trust to share with. Stay especially close to your family. They are so important. Rob, you will meet a young lady that will come into your life and will be supportive, encouraging, loving, and best of all....she will be your one true love....believe it my friend, it will happen for you!!
Most importantly, ALWAYS REMEMBER YOU ARE NEVER, NEVER, NEVER ALONE in this world, or with this disease....you are loved and we are all thankful that you are here. Stay in touch and always feel free to let your fingers do your screaming on the keyboard (smile) if you need to.
We are here for you, always.
02-18-2008, 12:35 AM
I am so sorry to hear about your girlfriend. I think it was cruel; though better before the wedding than after. Rob, you deserve a lot better than than someone so shallow.
Lupus is a chronic disease, but it does not define us as a human being. Inside we are still the same person, we have to learn to develop coping mechanisms at times.
I hope you can find a counselor to talk to soon. Keep us updated and take care.
03-02-2008, 06:54 PM
I just wanted to check in and see how you are doing. Like I mentioned, I'm trying to figure things out as well. Therapy has really helped a lot as has communicating honestly with the people I do trust so they can help me see things more clearly.
I truly hope you are able to start talking to someone, your mom or one of your sisters as one on one talking has helped me a bit.
I'm happy you found this site and that you have positive influences and words floating in your head from here.
Hi Papillon. I'm doing OK. Taking small steps. Spent about four hours over at my parents house the other day. That's the longest I've been out the house in almost a year. Still looking for a councelor, my choices are rather limited here. I've been trying to talk here at least once a day, and it's helping. Thanks for asking Papillon. I hope all is well with you.
03-02-2008, 07:14 PM
03-06-2008, 05:03 PM
Isolation is easier for me, too. I know it's not emotionally healthy, but "normal" people don't understand. I discussed my depression with a psychologist. He gave me permission to live one day at a time. I decided not to worry how bad I felt yesterday and what I didn't accomplish or what I'm going to feel like tomorrow. I decided to be glad I made it through today, and if it's a bad day, I know I can start tomorrow with an emotionally clean slate. I also realized in that visit that life is really what I make of it. I get to choose. I have the power. I can choose to be happy no matter what circumstances come my way. Somtimes I don't want to, but I still find comfort in the fact that that's my choice too. This way of thinking helps me take the power from the disease and give it back to me.
03-06-2008, 06:03 PM
While it may seem easier to be on your own..and in someways it is, but the problem is when you want or need the company....it's not always there for you.
For me, I had to realize I wasn't responsible for other people. I can be around them with out owning their needs. I still have a very small circle...a tinny tiny circle :)) of people in my life but it's a start.
03-06-2008, 06:25 PM
Hey sits inthe corner! Thank you for thinking of me.
Luckily I do still have a small group of (very dedicated) friends, too. You are right on about my tendancy to take on other people's problems/stress. I'm trying to work on theses issues!! :)
Thank you all so much for your ideas, encouragment, and friendship. I've had a couple of good things happen in the past two days, and I'm going to put an update up to let eveyone know what's happening. The encouragment I've gotten here is the best gift anyone could ask for, thank you.
Pretti in Pink
03-07-2008, 08:23 AM
I'm really glad things are looking up for you and hear your spirits lifted.