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Thread: Hi, just wanted to tell a little about me...

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    Default Hi, just wanted to tell a little about me...

    Hello all,

    I ran across this site in one of my books on learning to live with a diagnosis of lupus. It's been 13 months since the diagnosis and my emotions have been on a roller coaster. Most of my family don't understand what I'm going through and the only other person I know that had lupus died so for me this group is very important because I don't have to justify or explain what I feel. :cry: I want to know how you all handle being in relationships in regards to possibly being a burden to the one you love?

    Sometimes I still can't believe what the tests show or maybe it's that I don't want to believe it. I have days when I don't feel in any way different from how I did years ago and then all of a sudden, the pain sets in for no apparent reason.

    It hurts not being able to play with my son and live the active life I was accustomed to for so many years. I was told by my Hemo that I was severly anemic and I took iron supplements and folic acid for years, had 4 blood transfusions and 2 iron infusions before my new PC discovered that the problem was not a lack of iron but the culprit was LUPUS!!!! That was the hardest thing for me to hear because what I knew of this dx was that it was fatal and painful and I did not want to go through that.

    Fatigue is a big issue. I wake up between 3:30 and 5 a.m. every morning. I fall asleep round 'bout midnite or so. Now I take Nortriptyline to sleep because I'm so drained during the day. The other problem is weakness in the legs and my Neurologist scheduled me for and EMG/NCS on 10/27 and MRI on 10/28 to rule out MS.

    It just seems that there is so much to deal with with this disease and when you think you have finally gotten a handle on things, something else happens.

    Nevertheless, I am thankful for all the little things that I seemed to have taken for granted in the past. Its not until you can't do a thing that you really appreciate it and that's where I find myself.

    I am looking forward to conversating with all of you. Any advice, info, encouragement, experiences etc that you want to share, I am looking forward to reading.

    I've never met any of you but I love you all!!! ops:
    Blessed in VA

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    Lacrisha, we are blessed to have you among us! Welcome!

    You'll meet many people here who have lived with lupus for many years, it isn't always fatal - I read once that about 80% of us live a "normal" lifespan.

    I'm going to do what I almost always do with newbies who are frustrated with how others are viewing them, and frustrated with themselves. I'm going to send you to another website - www.butyoudontlooksic.com - and read "The Spoon Theory." Oh it is a wonderful story and a wonderful way to explain!

    Life changes, life moves a bit more slowly. Some days are energetic, others move in creaky slow motion. But as you said, there are may things to remain grateful for - finding a place where you are among those who understand and who can support you - that is wonderful, isn't it?

    Hugs, dear, and welcome!

  3. #3
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    Thanx hatlady,

    It does feel good to know that I can come talk to people who know exactly how I feel and won't judge me because of my not so pretty days. Today, I had labs done and the Neuro wanted to do another ANA again and after I left the lab, I have been on the verge of tears. My fiance asked me what was wrong and I couldn't give him a reason other than it's just one of those days. :cry:

    Today was definitely an I need a hug day. Thanx for them hatlady and I pray that things continue to improve for you.

    I am goint to check out the spoon theory.
    Blessed in VA

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    Welcome to this site. I am new here too and haven't done alot of posting but I do come here often and just read. It just reminds me that I am not alone.
    I was having alot of problems also for a couple of years and ended up having to have open heart surgery at age 32 to have a valve replaced. No one knew what had damaged my valve and then I got the diagnosis of Lupus, fibromyalga, and srodjens(ms) disease about 7 mos ago. So now we have the answer to the heart valve damage..
    Your post caught my eye when I read how bad your fatigue is.. I still feel like I am alone in this issue until I read how mush sleep you get each night. Others mention fatigue but I never imagined there were others out there as bad as me. I fall asleep driving. I literally start to feel drugged as I try to fight and keep my eyes open. I have fallen down a few times, fell off the toilet, out of my office chair. I have put bruises on me and even on my face when my head has fallen over and hit the corner of a door. And I didn't even mention the memory problems that I have and they are getting worse daily. This has made my DH feel really bad because he gets funny looks when people notice the bruises.
    So tell me?? Is your fatigue this bad or should I be more concerned?
    Again welcome to this site and I hope you have a lot of good days in the future.

    Angie
    "The greater the obstacle the more joy in overcoming it"

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    Hi hatlady, you always seem to give such positive and up beat information. This is really nice to see.
    Just curious if you can help me figure this out?? Why did so many people use to die earlier from Lupus and now we are told we have an 80% chance to live a normal log life?? Just curious how these have changed..
    Hope you have a wonderful weekend.

    Lexis214 (Angie)
    Quote Originally Posted by hatlady
    Lacrisha, we are blessed to have you among us! Welcome!

    You'll meet many people here who have lived with lupus for many years, it isn't always fatal - I read once that about 80% of us live a "normal" lifespan.

    I'm going to do what I almost always do with newbies who are frustrated with how others are viewing them, and frustrated with themselves. I'm going to send you to another website - www.butyoudontlooksic.com - and read "The Spoon Theory." Oh it is a wonderful story and a wonderful way to explain!

    Life changes, life moves a bit more slowly. Some days are energetic, others move in creaky slow motion. But as you said, there are may things to remain grateful for - finding a place where you are among those who understand and who can support you - that is wonderful, isn't it?

    Hugs, dear, and welcome!
    "The greater the obstacle the more joy in overcoming it"

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    Will I be able to continue working full-time?
    Many people who have lupus are able to continue working full-time. However, since lupus affects people to varying degrees there is no real way of predicting what your course of lupus will bring in the future. Some find they have to cut back to part-time or try modifications of their work environment or schedule, some find they have to take a leave of absence for a period of time, others may find their lupus activity is such that they are unable to continue with working, and some may go on disability.

    Will I live long enough to see my children grow up?
    The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal lifespan.
    Reference: see Facts & Overview, What is Lupus?
    http://lupus.org/education/faq.html#28
    I had to go look up on Lupus.org, which is where I thought I'd seen it. I found that gave me hope when I was first diagnosed. Back in those scariest of scared first few days when I said to myself "will I be dead in a year?" Well...still here! And have learned the blessings that go along with chronic conditions, and the joys of moving a bit more slowly. I still work full time, I still garden. I still work out - tho a bit more gently.

    Most of all, I've learned that knowing others who face similar challenges helps me day to day. Life is full, and filled with wonder.

    Treatments have changed and improved over the years. That, and tests have improved as well - that's why we have a better chance now, I think. Knowledge is a good thing. Research is a good thing. And having each other is a wonderful thing.

    Thank you!

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    Hi there! Just wanted to say that I too am newly diagnosed. It is nice to come here and sometimes just read. Also to vent. I am lucky my partner is very understanding, but it gets old to always be talking about this stupid disease. Sometimes I get so angry I just cry. I think it's good, though, to let it out.

    As for your fiance, I've found that it is important to share my feelings with those close to me. (Whatever you are comfortable talking about) Remember that your fiance knows something is wrong and would probably love the opportunity to help you in any way he can. I know my partner feels very helpless most of the time. I think it's important to acknowledge that your family and friends are going to have some emotions of their own related to your illness.

    (((Hugs)))

    Cyndee
    Possible Lupus 1995?
    MCTD? 2004
    Fibro dx April 2005
    Lupus dx September 2005

    "You, yourself, as much as anybody in the entire universe, deserve your love and affection." -Buddha

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    Default Your response was right on time, THANX

    Hi Tumbleweed..

    As far as my fiance goes, last night he called round 2 am and we had a heart to heart. He reassured me that there is nothing that I could go through to bad for him to deal with. He actually is ready for us to get married because he doesn't like living seperate from me. At the time we talked, he said those things I needed to hear and I realized that he is sincere and what's going on with me is something that he's willing to go through with me and that makes it so easy knowing that he loves me for me and not because of what I am going through.

    Thanx for the words of encouragement and support.

    I trust that you will have a wonderful weekend. Once again THANXX!!!
    :BIG:
    Blessed in VA

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