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Thread: Ignorance is not bliss!

  1. #11
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    I was so sorry to read of your loss. You have had so much on you rplate lately, too. Sometimes life is just so unfair. Please know I'm thinking of you.

    To answer your question - My sed rate at diagnosis was 120 and currently is 8.
    Missy

  2. #12
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    Oh, Southernbelle! I am SO sorry for your loss. I know that this is a really hard time for you. I will continue to pray for both of you. God bless you.

  3. #13
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    I have really started to look at life and the way I should live it alot differently since my mom died in June, actually a little even before that. Our daughter-inlaw committed suicide Christmas Day 2005 ( that was horrible! ), then (for doggie lovers ) I lost my precious little toy poodle, Angel, on May 9th, who was so fat she looked like a sumo wrestler, but was my baby! She was 13 years old and had Cushings disease. She was not your normal poodle, not prissy or girlie, she was so cute. Then on June 23 my mom died, the first week in July we had to put my dad in the Health Center, where he will be until his last day, about a week later we got all the news about my husband having the 4 autoimmune diseases he has, and then he lost his job with the company he had been with for over 20 years. So it has been rough, but this board has helped me so much. I know in my heart that I would not have come along this far without you all. You have no idea how many xanax and how many antidepressants I have been through. Now I am down to Lexapro once a day. Even when I lost friends because they did not understand how this all feels, I have made it to where I am now with prayer and the help of this board. I was previously on another private board with only 7 ladies on it. It was a board for ladies who had motorcycles, or rode with their husbands. We have a 2005 honda goldwing 1800. Everything went great for over a year, we called each other, sent each other cards and talked on the phone and emailed constantly. I thought we were close. When Larry got sick, I got comments like "put your big girl panties on" or I have sympathy, but not that much" or " you have a choice to stay weak or make yourself stronger," and I know all of you can see how this put me into a black pit. I resigned and found this board, and only one person from the old board has continued to be my friend. My doctor told me that when you are in a crisis, that you will find that 1 out of 10 people are truly your friend. I was so stupid in thinking they would understand. It is so nice to be able to come here and just say how I feel and know that I will be understood. How cool is that?? I constantly thank the higher power for making our lives get better day by day. It has been a struggle, but as I said before, I truly believe that 2007 will be better. I know that my husband and I are not alone in all of this. I know all of you have your constant ups and downs and I know how much your lives have been changed also. I also know how hard it can be on the whole family. I guess we are all in this together, and since we all are having these problems, I can think of no better place to come to. Thanks to you all!

    Grace

  4. #14
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    Default I'm new to all this and never heard the word Lupus uttered

    about me until this past summer (I am 39). My SED rate doesn't seem to register any inflammation, even though I am in extreme pain AND have visible inflammation. Does this make sense?

    BTW, I am on plaquenil, relafen, and methotrexate.

  5. #15
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    Grace, the people who turned away from you because of your husband's illness are the real losers here, because they will never experience the joys, blessings and sometimes pains of a deep and true friendship that both gives and receives. Friendship truly is a two-way street. And when those people find themselves in need - and someday they will - who will they have left to turn to? I feel sorry for people who are that shallow because they are missing out on a lot in life.

    I am very sorry for your cousin's loss - it must seem like one grief piling on top of another right now.

  6. #16
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    Hi Milagro,
    Sorry I pop i infrequently but have had lots of support here too. Unlike most of you I am in the Uk. My Sed rate is 41, its been about the same since I started to be ill in 2001. i am on low dose prednisolone but it doesn't seem to alter much
    I have lost lots of my friends too. They think you look fine and can't understand why you cannot do what you used too. I have just let them go
    Val

  7. #17
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    Default Milagro

    I don't understand how you could not have inflamation. Did your doctor explain it to you? My husband, Larry, has a sed rate of 7 now, down from who knows what, because his old doctor did not see fit to record anything. He hurts alot and I know he is not faking! I just wish everyone on this board who has these awful diseases would just get better. After going through this with Larry, I would not even wish any of this on my worst enemy.

    Take care,
    Grace
    In your lifetime, you will find that you have true friends, and those who are friendly. It is important to recognize the difference.

  8. #18
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    Default Marycain

    You know even though I mentioned it in my post, it is something that I do not worry about anymore! I get awesome support here and my family is great and that is all I need. This board is a lifesaver for me. Not only do I learn immense information, I get major support! I haven't had one person on this board to tell me to put my big girl panties on and that other people have it worse than me. I know there are many people out there who are in bad shape, I don't have to be told this.
    My cousins death was so unexpected, it really caught me off guard. I am so much stronger now than I was just a few months ago. I will not let this get me back down. I like to think that right now she is with my mom and my grandma!
    Grace
    In your lifetime, you will find that you have true friends, and those who are friendly. It is important to recognize the difference.

  9. #19
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    Default Val

    I know for a fact that people just do not understand how someone can be so sick and not look bad. Sometimes if I am in a mood, :evil: I also think they don't care to understand as long as it doesn't affect them. My husband still looks good to me, except when he is in a flare, and then it shows all over his face. I think I saw somewhere online that there is a book out there called "But you don't look sick." Have you heard of it?

    Grace
    In your lifetime, you will find that you have true friends, and those who are friendly. It is important to recognize the difference.

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