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Thread: I forgot to make an introduction thread!!

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  1. #1
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    Default I forgot to make an introduction thread!!

    I'm a 20 year old female who officially got diagnosed with Lupus. But that wasn't my start of the journey , I have been ill for awhile... I had to start homeschooling at the age of 13 because of Juvenile Arthritis, and a rather sever platelet dysfunction that left me in the hospital and often anemic - I had some other health issues I think aren't as relevant. My guess would be that I have had Lupus since the age of 15 (when I started feeling sicker) and by the age of 19 several doctors thought I might have it.. and some where hesitant to say I had it.

    The recent increase of swollen lymph nodes in several parts of my body, adrenal glands swollen, a note of higher infection in the body, positive (ANA), rash, horrible head aches, random fevers, horrible fatigue, joint pains, and having to have my dad cut a ring off from my finger because it was swelling so badly around it was turning my finger purple (one of my favorite rings, too :-( ) was enough to say it was Lupus. I have a bit of mixed feelings about being diagnosed.. Scared, fearful, but also even with that, a relief of knowing -what- is wrong.

    I found out due to the blood disorder I can't take NSAIDs type medication for the swelling (e.g Motrin, ibuprofen,aspirin..) which I'm told can help manage some of the symptoms that I'm having... so I'm stuck taking all steroids and prescription muscle relaxers, which is making me feel rather swollen...ugh. The Lupus has been playing off the blood disorder and triggers, stress, or walking around.. will cause my body to swell sometimes, feet, legs, hand, and stomach.. the stomach along with nerves will be so much to cause me to vomit blood and feel a sharp pain in my stomach.. I'll go to the bathroom to "use it". and find all that is coming out is blood passing...

    To say the least... the last 4 years of my life has really sucked and been challenging (e.g not having friends, not going to a prom, not going to graduation...) and several other things I wish I where able to do.. that I kinda regret I let the illness take over.
    Last edited by Venny; 05-04-2014 at 09:31 AM.

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Venny;
    I responded to your other posts, to your chat inquiry, and accepted your friend request. So, I feel as though you are a member of our family and not such a newby.
    Your story is quite familiar to most of us. Many of us, once diagnosed or at least having a name for what we've suffered, found that we were suffering from the disease for many, many years (like you, I now know that the issues I had in Jr. High and High School were due to Lupus).
    I did not get a quick diagnosis. It took more than a year for my doctors to finally give me a diagnosis of Lupus. In the meantime, I lost all of my hair, had open lesions on my face, hands, and in my mouth and nose, was swollen from inflammation and so fatigued that I could not walk from the kitchen to the bathroom without needing to sit down.
    I'm sorry to hear that you are unable to take Nsaids for pain and inflammation. I hope that the Prednisone and muscle relaxers are helping you. I'm quite concerned about the passing of blood when you use the restroom. Have you discussed this with your doctors? If so, what do they think is the issue? If not, please do so as soon as you can. Keep us posted please.

    I wish you the very best
    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by Saysusie View Post
    Hi Venny;
    I responded to your other posts, to your chat inquiry, and accepted your friend request. So, I feel as though you are a member of our family and not such a newby.
    Your story is quite familiar to most of us. Many of us, once diagnosed or at least having a name for what we've suffered, found that we were suffering from the disease for many, many years (like you, I now know that the issues I had in Jr. High and High School were due to Lupus).
    I did not get a quick diagnosis. It took more than a year for my doctors to finally give me a diagnosis of Lupus. In the meantime, I lost all of my hair, had open lesions on my face, hands, and in my mouth and nose, was swollen from inflammation and so fatigued that I could not walk from the kitchen to the bathroom without needing to sit down.
    I'm sorry to hear that you are unable to take Nsaids for pain and inflammation. I hope that the Prednisone and muscle relaxers are helping you. I'm quite concerned about the passing of blood when you use the restroom. Have you discussed this with your doctors? If so, what do they think is the issue? If not, please do so as soon as you can. Keep us posted please.

    I wish you the very best
    Peace and Blessings
    Namaste
    Saysusie
    I was in the hospital twice for the amount of blood I was randomly loosing and blood counts going down every few hours they'd check my blood. Then after a day.. it randomly stopped. They had me walk around the hospital area (a small amount) to see if they could reproduce the blood issue.. they couldn't, after 1 hour, they sent me home, and we stopped to get something to eat at a restaurant.. and before I even ate.. it happened again. I went back up there and they did a lot of blood testings.. refereed me to the hematologist (already had one), and another specialist who tried to do a colanopsy.. they gave me the prep medication 5 times (different forms) and each and every one of them I could not drink through and got violently sick from.

    They held off on it as it was making me highly sick.. they did a cat scan and a ultrasound of my stomach and found the swollen adrenal glands.. swelling on my liver, along with a non-cancer type tumor on the liver? Told me not to worry about either of them.. They did more testing found my DHEA high, did a scan of my ovairys and again of my adeneral, because the texts where so high the Endocrinologist was sure there was a tumor in either area. Came out to be no tumors.. but the swollen adeneral gland, and high cortisol he couldn't understand... The hospital, my doctor, Endo, and the specialist who tried to do the colanopsy all referred me to the Rhematolist ... and because they felt it was urgent I got in (normally it's a 3 month wait..) within a few weeks I saw him.

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    I'm also very sorry to hear your struggle with Lupus : (

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    Saysusie (05-16-2014)

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    I just noticed I'm now a "sea monkey" : D

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    check the post on Climbing the Ladder in the Animal Kingdom http://forum.wehavelupus.com/showthr...imal+kingdomit is one of the little fun things we do to make our life here a little more enjoyable
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    ^ It's cute!!!!

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