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Thread: New to the forum, old to lupus

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    Default New to the forum, old to lupus

    Hi there! This is a first for me, posting that is! As I have read some of the other postings I feel great empathy for those of you that struggled for many years before diagnosis. I've been fortunate in that I was clearly diagnosed 13 years ago.

    I am 32, mother of a 5 and 3 year old, and sometimes my 39 year old husband. To say lupus has been a struggle, would be an understatement. The first few years were a roller coaster ride of flares involving my skin, joints and just a general state of fatigue. I evened out and went through some quiet times creating the opportunity to have a family.

    Our first pregnancy went well, our second not so much. My blood pressure was high in my last trimester, made it to 36 weeks and was induced. Our baby was small but healthy, thankfully, but I crashed. I struggled for 3 weeks after her birth and was finally admitted for a 7 week stay in the hospital. In that time I coped with kidney failure, dialysis, massive amounts of prednisone, chemotherapy, TTP, plasma aferesis, forced diabetes, forced menopause, internal hemmorhaging, etc. I was physically falling apart.

    Here I sit, 3 years later a "healthier than the average healthy person", so my doctors comment. I feel good! No longer am I a slave to treatment schedules and am only on one maintenance med, plaquenil. Would I change anything about my experience? Never. I know that there may be another significant flare in my future and that's OK. We will cross that bridge when we come to it, until then, onward and upward!

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    Hi Rockinrobin
    I am so happy to hear that you are currently in what we call "Remission" or what my doctor's call "Downgraded to mild Lupus". I have been in this stage of Lupus for over 10 years and have even eliminated the maintenance medications. Like you, I know that this may not last forever, so I continue to take precautions and maintain a healthy lifestyle. I do, however, have active Fibromyalgia and all of the symptoms thereof (and all of the medications also). Also, I still have lupus flares that lasts anywhere from days to weeks - During those times, I may have to take steroids or plaquenil, and sometimes I don't. It depends upon the severity of the flare.
    I am happy that you are now relatively healthy and able to enjoy your children. That is a blessing in and of itself isn't it?? Continue to take care of yourself, take all of the precautions, eat a healthy diet and learn as much as you can about Lupus. This is the best way to maintain your current healthy state and to, hopefully, become even healthier.
    Welcome to our family, you will not find a more supportive group of people anywhere else. We are here to help you in any way that we can!!

    Peace and Blessings
    Saysusie

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    Default Thank you

    Thank you saysusie for responding so promptly, from what I have read you are a very dedicated woman and a role model in living with lupus. I have a question regarding lupus and children. Having two daughters and a history of my two sisters having autoimmune disorders, should I be having them assessed at an early age for any markers in their blood, or am I jumping the gun a bit in my concerns. There were certainly no neonatal markers when I was pregnant, but it constantly remains in the back of my mind? Information? Suggestions?

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    Hi Rockinrobin :lol:
    The precise cause of lupus is unknown. Scientists generally believe that some people are born with a genetic predisposition for lupus, but environmental factors are believed to play a critical role in triggering the disease. These factors may include infections, antibiotics (especially sulfa and penicillin drugs), ultraviolet light, extreme stress, certain drugs and hormones, according to the Lupus Foundation of America.
    Some researchers and doctors believe that, if you have a parent, child, or sibling with lupus, your risk of developing the disease is somewhat higher due to the genetic predisposition. However, most health care professional probably won't test your children for the disease unless they begin to develop symptoms.
    There is not, as yet, any scientific proof that lupus is hereditary. As I mentioned before, it is suspected that some people may be more susceptible to lupus through genetics. Research in this area is still ongoing! So, having your children tested would be a personal decision between you and your health care provider. Sorry, but there is no standard answer to your question. :cry:

    Peace and Blessings
    Saysusie

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    Hi Rockinrobin,
    I'm also old to Lupus. I was diagnosed in late 1999 but my rheumy tells me that I have probably had it since around 1994. So far I haven't had any kidney issues but I have trouble with my skin and lots of problems with my joints. I'm on quite a few meds as well. One day I hope to be able to get off all the meds but in the interim I put up with them.
    Michelle

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