Page 1 of 2 12 LastLast
Results 1 to 10 of 16

Thread: New to Lupus and RELIEVED!!!

  1. #1
    Join Date
    Apr 2006
    Posts
    17
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default New to Lupus and RELIEVED!!!

    Now I know this sounds odd but I am relieved to finally have a diagnosis. I am 32. Single mom of 3. I had a heart attack at 29 and 2 weeks ago was diagnosed with several PE's. My whole life I've had many symptoms of Lupus, though I didn't realize it then, but no one ever tested me. I actually thought I was imagining everything and just learned to live with all that was going on.

    However, when my doctor finally tested me for lupus, I was relieved to know there was a reason. I am on blood thinners and will be for the rest of my life, for the clots, but at least I know why I am having them.

    So, for the first time in my life I feel hopeful. I actually feel like I can now begin to live. I have feared death for as long as I can remember because of everything that has happened in my life and now I don't fear it anylonger. Weird, I know. But there is comfort in knowing.

  2. #2
    Join Date
    May 2005
    Location
    Lakewood, Colorado
    Posts
    72
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    I was also relieved to finally know what was wrong with me and that I wasn't crazy. But, at the same time, sad that there was something really wrong. It's a weird mixture of emotions.

  3. #3
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,738
    Blog Entries
    9
    Thanks
    1,604
    Thanked 924 Times in 587 Posts

    Default

    Hi Hurricane:
    I think that we all have felt that sense of relief to know that there was a name for what we were going through and that it was not all in our heads. Also, we also went through the grieving process of learning that we had lost our perfect health forever.
    It is a mixed bag of emotions and rather hard to describe. Then, when we look back on our lives and our symptoms, we realize that we suffered for years before we even realized that there was something wrong!!
    So, We all know exaclty what you mean and can understand how you feel. You are not alone!!

    Peace and Blessings
    Saysusie

  4. #4
    Join Date
    Apr 2006
    Posts
    17
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    I had my heart cath done yesturday and all is well. Of course, after being diagnosed with Lupus, we knew it wasn't my heart that was causing the clots.

    I am going in for a biopsy next week on my ovary.

    I keep telling my OLDER bf he will have to trade me in on a younger model!!! haha

  5. #5
    Join Date
    Mar 2005
    Location
    Tallahassee
    Posts
    231
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Hi Hurricane. I think that is a common reaction for a lot of us. I CRIED with relief when I got my results. I felt like I was a headcase but the relief in knowing I wasn't crazy (well not overly so) and hallucinating was great. After seven years of seriously starting to doubt my sanity, and having weird symptoms even before that, having a name for "it" was just something I can't describe. Course that also meant coming to terms with knowing it wouldn't go away like I was hoping either.
    Welcome aboard and good luck with all your testing.

  6. #6
    Join Date
    Apr 2006
    Location
    Huntsville, AL
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi hurricane,
    I know exactly how you feel. I am 24 and was just diagnosed last week after many years of struggle. I was happy to finally put a name to everything that has been happening to me and to finally put the fear of sudden death behind me. I have been having problems with a clotting test called the D-dimer running past the computer measuring limits (greater than 10,000) and they could not figure out if I was constantly forming and breaking down clots or not. I lived in fear that I was going to suffer a sudden stroke or heart attack and die. I have been on prednisone and plaqunil now for a month and the test is down to 5600 (yay!). The relief it brought to me to know that while I do have lupus I can be checked regularly and not worry about dying anymore. I do have my sad moments but don't we all wonder why me? Then I think about how lucky I am to finally know and be treated and that I can live a good life with it! Its nice to know that there are support boards like this one where we can share our thoughts and support one another through each of our ordeals.

    Take Care,
    Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

  7. #7
    Join Date
    Apr 2006
    Posts
    17
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Headed back to the doc this morning. More blood work. Testing my clotting levels after my heart cath last week. Also, my hip and knee on the side where I had my surgery are very stiff and painful.. I've been using hot and cold packs on my knees to help the swelling, stiffness, and pain but not much luck for my hip. Can't take normal pain meds b/c of the coumadin.

    I've had joint pain for as long as I can remember but was told I had arthritis. At 19!!! Why do doctors just put it off on anything they can come up with and never look for the real reason?? Oddly enough I work with doctors all the time in the OR and even they can't answer that question.

  8. #8
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,738
    Blog Entries
    9
    Thanks
    1,604
    Thanked 924 Times in 587 Posts

    Default

    Hi Kcs9hurricane :lol:
    Please keep us advised of how your appointment goes and how you are doing. As far as doctor's who give reckless diagnosis instead of researching....when you find an answer to that one, there will be an entire community of Lupus patients who will be ever so grateful and thankful (lol)

    Peace and Blessings
    Saysusie

  9. #9
    Join Date
    Apr 2006
    Posts
    17
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    I just came from my doc. He is sending me to an Orthopedic Surgeon to have X-rays done of my knees and hips since I am in so much pain. Gave me a Rx for it but says I may need a steroid injection.

    Also, says my cardiologist wrote a two page letter to him stating he thinks I have an anxiety disorder but that my stress test and heart cath show something called Anteropical Wall thickening. Have to wait til Thursday to find out what all that means. I've looked it up and can't even find anything showing that word exists.

    Tests also show that I have had at least one if not more heart attacks.

    My doc was scratching his head wondering why no one has ever tested me for lupus. For years each doctor has treated one symptom ignoring the rest and giving no reason for all my ailments.

    ANother week out of work. I am suppose to be getting married in August, remodeling our house, and going to Disney. My fiance is afraid there is too much stress involved in all these things and may things worse. Luckily, he is very supportive and very understading.

  10. #10
    Join Date
    Nov 2005
    Location
    Mount Vernon, NY
    Posts
    13
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Do worry. Stress will lead to less sleep which leads to more pain. Just relax. God would never give more that you can handle. You have for the past number of years. Stay strong!!!
    cas

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •