the REAL cost of Lupus

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What do I mean by the real cost?
Lupus costs in every way!

Lupus causes us many difficulties.
Lupus causes us many hard ships.
Lupus causes our health to fail.

All of these things are a cost of having Lupus.
These are not what I am referring to.

As humans we identify people by there traits and personalities.
We say this is a kind old woman,
Or he is a grumpy old may.
Even she is a busy body.
These traits make us what we are.
We prefer to associate with people who have likable traits.

These traits and the modifying of them, is the real cost of Lupus.

I am not the person I used to be.
This simple line has been the excuse for many arguments.
But for me it is the truth.
Lupus has changed the way my brain reacts.
Lupus has modified my ability to be me.

I used to be a happy easy going person.
As my world was taken away from me, I began to hold on to anything I could control.
This sounds harmless enough.
It usually is.
But when more and more is removed, you hold tighter to what is left.

Today my abilities to use my brain are very modifies from what they used to be.
As growing adults, we expect to learn and become better people.
Lupus has caused the opposite.

My ability to have emotions has been compromised.
Now the only emotion I have is extremes, either good or bad.
There is no ˝ way. There is no slight rising of emotions.
There is only on or off.
My ability to reason has been compromised.
Any judgement that is against what I am trying to say, or be, is now a personal attack.
I am unable to calmly discuss differences of opinion, which effect me.
I hold on to me so closely, that any difference of opinion is seen as an attack on who I am.
Add this to my emotional on switch and sparks fly.

My ability to sit back and let others take control is also compromised.
I am happy to sit back and let others work.
I am happy to sit back and watch others play.
But challenge my way of doing something, and I will interrupt you and try to take over.

I have only been diagnosed with Lupus for about 3 years.
But I have suffered from it for about 35.
I have had it defining who I am for all of those 35 years.
But I did not know it. I was unaware of my Lupus, and what it was doing to me.
Last week the real cost was brought home to me in a very real way.

I have known my wife for over 30 years.
We were young lovers, way back then.
Circumstances drew us apart, but we were to reignite our relationship.
It took about 12 years for our separate lives to cross paths.
I had just left the Airforce, and she had just left her husband.
That was almost 19 years ago, and today we are separate people again.
Lupus is the cause of our relationship demise.

My children still love me deeply; they just cannot live with me.
My wife has grown hard to my indifferences.
She does not understand the new me, and dislikes this new person.
For years she has seen the changes, and accepted them.
But eventually the old person dies, as Lupus takes over.

This new person does not understand how to do many of the things, we as interacting people need to co-exist.
I have lost the ability to communicate with small talk. I no longer understand it, and cannot continue to engage in it.
I have lost the ability to communicate through emotions; I cannot sit quietly and enjoy a beautiful sunset with someone.
I have lost the ability to see someone else’s point of view, if it differs from mine.
I have lost the ability to use and see personal queues. Subtle queues are no longer evident to me.
I have lost the ability to be me.

I need to learn how to overcome what lupus has changed.
I need to learn how to be me again.

Life is a journey…..
It starts with 1 step.

Today is my first real step.
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  1. n.mac's Avatar
    Very thought provoking-Thank you for sharing.
  2. Nonna's Avatar
    Thanks, here is another way we are effected. I lost my husband for the same reasons only I didn't understand what was happening at the time. I just knew it was me and I couldn't figure it out.

    So what I'm saying is I do understand. Now I feel like it's happening with my family. I need to figure out how to stop it. No more curling up in a ball; but how to open up again. We all need to help each other.

    My thought for today - exercise gets the heart rate up and the muscles moving, that increases blood flow. May that will help clear my mind to function.
  3. Saysusie's Avatar
    Dearest Steve;
    I think that many of us have had to recognize the fact that we have lost who we once were and who we are now is unrecognizable (and often intolerable) by our friends and family. However, many do not have enough introspection to even admit that they have changed and/or that they need to do something about the change. The fact that you recognize these undesirable changes in yourself is, in and of itself, a big step in your journey to find a "better" you.
    Your impatience and inability to participate in activities that seem trivial to you is not a character flaw (in my opinion). It is an indication that you have completely changed your priorities with reference to what is and is not important to you and your health. I think that this is a good thing! You spoke, at length, about what you no longer do, who you no longer are and you only spoke about the negative parts of the "current" you. But, I am here to tell you that there is SOOOOOO much that is good about you, sooooo much that is admirable about you, and sooooooo much that is hopeful and caring about you. I SEE THESE THING IN YOU and I've never met you in person!
    Yes, the "old" you is gone. But there is no reason why you cannot choose to make the "new" you the best that he can be given his circumstances. I get the feeling that this is what you have chosen to do and I truly admire that. Also, think about sharing what you have written here with those people in your life who are important to you. A love that is as deep and long lasting as yours has been will always have a spark remaining that can be re-kindled with open, honest, and respectful discourse and with valiant efforts to do all that is necessary to be the best that you can be right now, right here, lupus notwithstanding!
    I admire who your are, I recognize the good in you and I praise it. Recognize it in yourself, capitalize upon it and always make it the first part of you that everyone sees!
    We are always here for you...gentle hugs
    Updated 10-31-2012 at 10:53 AM by Saysusie
  4. rob's Avatar

    I can identify with so much of what you have said. I too, have become a person of extremes. For me it's total anger, or intoxicating happiness. There is no more in-between, no middle ground.

    My fiancee left me after 6 years together, mostly because of my SLE diagnosis. It nearly destroyed me. However, I cannot imagine being married for nearly 19 years and then having it all end.

    I can only imagine that you feel totally lost.

  5. tgal's Avatar
    I have to agree with Susie, there IS so much good about you and I hope you can come to see that. If you only knew how many times I have thought, after reading something you posted to someone, "I wish I had his patience". While you were gone there were posts made that I thought to myself "They need Steve here. He would know the right thing to say".

    I have no doubt that you are different and that some of those differences are not positive, I think we all understand that because we deal with it as well. I hope you also are able to see the good in you though... There is so very much of it.

    Never forget that we are here for you just as you have been for each person on this forum in their time of need. This is why we call ourselves a family. It is more then a catchphrase. We really are family and we will help you get through it
  6. steve.b's Avatar
    I would like to thank each of you for your comments.
    It is because I truely believe this place is my family, that i have written this blog.
    I have true friends here.

    And yes I am seeking counselling, not for my marriage, but for me.
    i do go forward, trying to be a better me.
    i listed the negatives, because they are changes.
    Idid not list my positives, because they have not changed.
    i hope to draw on my positives..... to obercome the negatives.
    and my family here is a new positive, i have had for just over a year.
    without all of you, i would not be as positive as i am today.
    I draw on your strength regularly.
  7. running girl's Avatar
    Hey Steve,

    I'm sorry you are going through such a tough time.
    I don't come here as often as I use to, but whenever I do I am struck by your kindness and compassion. You always provide helpful, thoughtful counsel to so many struggling souls. Thank you for that.

    My heart is sad for you. You seem to understand the process and necessary next steps. One step at a time.
    Take care. Be kind to yourself.

    We all care about you.
  8. jmail's Avatar
    Hey steve, thanks for the honesty. That's a good trait, and could also be considered a "step", although you've always been honest, from what I've seen. My wife and I have had discussions, a couple all too recently, about my "new" temper, among other things. "Frustration" plays into it for me, but I've gotten to the point where I couldn't care less about very real issues and things happening to people around me (including family), yet I'll cry at the drop of a hat for a movie. Quite different from what I used to do. I've been dealing with ai stuff for going on 20 years, though lupus wasn't even hinted at until about 10 years ago, so I can't pretend to even begin to understand your situation, other than to lend you my support, such as it is, and try to help you, along with the others here, to your next step. One step at a time for as long as we breath, bro.
  9. rob's Avatar
    Quote Originally Posted by steve.b
    I would like to thank each of you for your comments.
    It is because I truely believe this place is my family, that i have written this blog.
    I have true friends here.
    You do indeed have friends here,

    You have earned the respect of a great many people here, and I am honored to be one of those people. I cannot even begin to count the number of times here that you've helped others in need of comfort, advice, and a friend to talk to.

    Perhaps there are places in your life where others think that you have faltered, but this place is not one of them.

  10. Phoenix2369's Avatar
    The raw honestly in this is beautiful.

    As much as I feel we can all relate, I can't imagine what you are feeling with the family issues.

    I wish you all the best, and I hope the therapy helps you find what you are looking for.

    Remember, although it doesn't always seem as such, you are not alone.
  11. Mica's Avatar
    This is so true! I feel I have lost a bit of myself throughout the years of having lupus. My mind used to be sharp and quick with not just academics but with normal everyday life, I miss my brains. I may laugh at the little things that lupus has changed my life with others, inside i'm just sad at the little costs lupus causes.
    Everyone around us can understand the pain and the actual medical definition of lupus but it's the small things that makes this disease really sucks. I have learned to deal with the sadness from it but sometimes it creeps up on you.

    I hate feeling dumb, even though i'm not, in conversations because I can't get out the right words when talking.
    I hate when i'm tired and people think i'm being snappy even though i'm not.
    I hate having to sit back and let others do things for me.
    I hate falling asleep in the shower.
    I hate that I can't play with my dog.
    I really hate that i'm at least 10 grand in medical debt.

    I know that this is my life now and I have come to accept it and live on but sometimes it's nice to get those thoughts out sometimes with people who understand.
  12. Nonna's Avatar
    I just wanted to say that your support here on WHL has meant a lot to me. Glad you're trying therapy, hope it helps you.
  13. Numpty's Avatar
    I wish I had some magic words to make things better but I don't. When my husband and I seperated it was the hardest path I ever walked but if I can make it out the other end, I know you can too. We'll all be here pushing you forwards even when you're trying to crawl back. Sending you lots of tight hugs xx
  14. Saysusie's Avatar
    Beautifully said, Rob.

    Quote Originally Posted by rob
    You do indeed have friends here,

    You have earned the respect of a great many people here, and I am honored to be one of those people. I cannot even begin to count the number of times here that you've helped others in need of comfort, advice, and a friend to talk to.

    Perhaps there are places in your life where others think that you have faltered, but this place is not one of them.

  15. steve.b's Avatar
    I am adding a small update to this blog. my son now spends every second week living with me. he wants to share his life with me, and to escape the isolation of living on a farm. he has just turned 14 earlier this week, and is starting to go through what every young person does. I am glad he wants me to be a part of his life. my daughter loves me .... but she has been diagnosed with mild autism (just as I have), and our minds operate on too close the same momentum. so we clash too easily. she still believes that living with me would cause too much conflict.... so we just visit. I also find it hard to comment on here as often as I used to. it is not that I don't have the thoughts..... it is just that quite often it is hard to work out how to say it, without sounding harsh, and our cultural differences being misunderstood. I have a very dry wit. and unless I am careful, I say the wrong thing, not because I think badly ...... but because I am unable to always say what I want diplomatically. I am adding these comments..... so we as a family can understand how lupus can effect us. it is only by sharing our stories that we learn from each other.
  16. debbie-b's Avatar
    You are an awesome person and a good friend, who always finds words of comfort for all of us.
    Lupus effects all of us negatively in one way or another, I have a much shorter fuse, than I used to, especially when I am in pain.

  17. Saysusie's Avatar
    Again, I say that anyone with as much introspection as you have cannot be all that bad (lol). Posting here is not of utmost importance to me. That you are devoted to taking care of your health is!!
    I have never read a post by you where I felt that you were being harsh or culturally insensitive. But, again, that is because you do choose your words so carefully and you are concerned about the feelings of others.
    I am happy to hear that you and your son are reconnecting. That is such a blessing. I know that you and your daughter will also find a common road to connect on and she, too, will be a big part of your life.
    You are greatly admired here and we care for you immensely!
    Peace and Blessings