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Thread: a quick intro

  1. #1
    Join Date
    Sep 2006
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    Default a quick intro

    Hello there,
    i have just found this website after being diagnosed a week or so ago. i had been ill since february when i developed a rash which my dr said was an infection caused by poultry - after several courses of antibiotics it had got worse, and i was feeling dreadful, so blooming tired all the time, and the pains in my arms, legs and chest were unbareable at times. my dr said he didnt think these other things were linked to the rash and not to worry about them.. finally i got an urgent appointment to see a specialist.. waiting from february to july and had some blood tests and biopsies taken - i bled like a stuck pig both times.. turns out my blood doesnt clot properly - and at last they have found out the problem. i am waiting to see a rhumatologist but as yet apart from pain relief i am on no meds yet. everything i have read says that the treatment makes you worse as it makes your imune sytems which isnt working properly not work at all.. is this true? will i actually get worse?
    :shock: my family are not taking things well at all, my husband told a neigbour that all i needed was plenty of excersise and diet (i told him that i needed to walk more and perhaps swim and also try to get more fish oils in my diet.. i would be interested in how other peoples family have managed, its hard for my husand as he is unwell and i am his carer, anyway hello and i hope i will get ot know lots of you, hugsxxxx

  2. #2
    Join Date
    Jul 2006
    Seattle, Washington
    Thanked 0 Times in 0 Posts

    Default Hi Dizzy,

    Welcome new friend, you will find this a wonderful place to receive encouragement, nurturing, tons of medical info, and the world's nicest folks hang out, right here !! I promise you that.

    Receiving a final lupus diagnosis can take months, and even sometimes years; so just know that there are many here who have gone through the waiting process as have I. I will tell you this, as I believe many others here will tell you too. STRESS is an absolute trigger for this disease, no kidding. If you can, don't be worried - it is easier to say than to do, I know.

    There's a book my doctor wrote called "But, You Don't Look Sick"; and it describes perfectly how many people, unknowingly assume that we can't be all that sick, if we're still looking that good! (and all the people here said.....AMEN - smile). It is very common dizzy for people to have that assumption, and it's only because they are not aware of lupus and the process this disease goes through in different people, there are different symptoms.

    My precious mom, is all of about 4"11" (in high heels, even)...and maybe weighs 100 pounds all soakin' wet. She has always been extremely active, playing tennis, and is very active in the social "scene". Whereas I am about as opposite, I'm about a foot taller, and all of twice her weight.
    Believe me, I completely understand, when people will say "you just need to get out and get some exercise, that's all".....well, that's not all.

    Exercise is very important, SaySusie will be stopping in to introduce herself and she will have a lot of information to pass along to you; alot of folks here swim, I know others who do water aerobics (as their joints hurt too much to do other types of activities), some walk; others cycle. It's wherever your comfort level is; exercise and fresh air are so very important. If you have a friend that you can go walking with, or activities that you can do with your husband. There's nothing like the buddy system. Talk with your doctor about this in more detail.

    My doctor has prescribed pharmaceutical grade fish oil, I take 3,000 mg a day. I do have to take it with meals. I had suffered a mild heart attack and kidney failure a year ago. Like you, I had to have a kidney biopsy; and yep, they're no fun. The great thing about having it done is; now I know where my kidney function level is at, and now I'm being treated for it and I am tested once a month. There will be tests to come in the future and like all of us, you'll find yourself frustrated; but it's a lot like brushing your teeth; you don't always want to...but you know you HAVE to...(smile)

    There are so many people here who will share their stories, their successes, their frustrations - it's the beauty of sharing. We share in good times and bad, so please feel comfortable - we're glad you've joined our family.

    Keep us posted and let us know how you do.....and feel free to ask questions anytime.

    Again, welcome new friend.

    Much love,
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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