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Thread: New Member (sorry long but still in shock)

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    Default New Member (sorry long but still in shock)

    Hi , I was diagnosed with Lupus in 2004 , I have managed to fight my way threw without medications as they did not work at first and I gave them many chances and time. I have a tendancy to be superwoman and maybe even "try to forget and move on". To my surprise I have progressed and have flares more often and need to see my specialist soon. As I was making plans to take better care of myself, my daughter who is 14, athletic, grade A student , hard worker..just a routine doc visit for her the other day, with some blood work because we always watch closely...they called us to tell us that she with her sometimes butterfly rash, has a titer of 1:320, and is now with her mommy a lupus patient. We are all still in shock and she is confused and I am scared for her and now have looked into Holistic Treatments for us both. This is all still fresh it has only been a few days, but wanted to get us both on here and some suggestions for youth chats or anyone that has experienced holistic treatments for lupus. Thank you all for reading , sorry so long ...
    A loving Mother

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    Hey sorry to hear the bad news
    I've only just been diagnosed, (i'm 19), but have had the illnesses symptons since i was about 16. If its any comfort, I was still able to have a normal education and do as well as i expected to and im now at the Uni i wanted to be at, so even though its a horrid illness, hopefully your daughter will be fine and be able to continue with her life as usual.
    My only adivce would to be take more time with stuff. Obviously she can't quit everything if she still wants to succeed, and I did this by instead of doing say an essay the night before, i did it bit by bit over a few weeks.
    Its hard adjusting, but once she has i hope all is well
    Feel free to message me about anything x

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    I don't have any advice but I just wanted to say I'm sorry for the news. I wish you both the best!

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    Default Re: New Member (sorry long but still in shock)

    Quote Originally Posted by cmorrison
    Hi , I was diagnosed with Lupus in 2004 , I have managed to fight my way threw without medications as they did not work at first and I gave them many chances and time. I have a tendancy to be superwoman and maybe even "try to forget and move on". To my surprise I have progressed and have flares more often and need to see my specialist soon. As I was making plans to take better care of myself, my daughter who is 14, athletic, grade A student , hard worker..just a routine doc visit for her the other day, with some blood work because we always watch closely...they called us to tell us that she with her sometimes butterfly rash, has a titer of 1:320, and is now with her mommy a lupus patient. We are all still in shock and she is confused and I am scared for her and now have looked into Holistic Treatments for us both. This is all still fresh it has only been a few days, but wanted to get us both on here and some suggestions for youth chats or anyone that has experienced holistic treatments for lupus. Thank you all for reading , sorry so long ...
    A loving Mother

    I am so sorry to hear your news and I hope you two find a way to hang on to each other and get through this as a family!

    As far as your question regarding holistic medication, I have tried some. I have never been able to go off ALL of my medicine but I have tried adding some natural therapies into it to see if they would help. I would get vitamin infusion every two weeks to only once a month. The infusions made me kind of sick to my stomach for the first 24 hours but after that I had a great burst of energy and felt pretty good! I regret to inform you that I had to stop. They are very expensive for me and my insurance did not cover it. I also would get B12 shots and those too helped a bit. I have tried specialized yoga for Lupus patients and even acupuncture. The last two helped me relax but again, for me, it all came down to cost and was very expensive I would recommend trying it.......it could not hurt and may even help. See what you think and if it still is not giving you the results you want your doctor is there to help you with those decisions

    I am happy you and your daughter are here! I am pretty new and found nothing but support and great information for me and my family here! Read and enjoy and we are all here for you :angel:
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    Hi Cmorrison,
    Welcome to the site. I am sorry to hear that both you and your daughter have this illness. I think you do need to be very careful with hollistic medicine. A lot of it is like snake oil and useless and can be down right dangerous. I have had this illness they believe since the age of 5 and I will be 50 this month. Please do see a specialist like a Rheumatologist and let them set your medication plan and things like that. I hope that I did not offend you, but to me hollistic medicine can be downright dangerous.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Kathy is right. I was under the supervision of my specialist at ALL times while I was trying the holistic medications. I was closely monitored and watched. Go see the specialist before you try ANYTHING!!!!
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Cmorrison,

    Welcome. I understand the parent-child aspects of this disease from the point of view of being the son of mother diagnosed with Lupus. Like you, I was also diagnosed in 2004. My mother was diagnosed around 1990. I'm sorry that this had to be something not only you have to live with, but you daughter as well.

    I know you want to do anything you can to help your daughter, and yourself. But, I have to agree with other members here that Holistic Medicine can not only be a waste of time and money, but it can also be very dangerous. There is no regulation or testing of any of the so called "holistic cures" that are out there. The danger usually does not lie in the actual methods of holistic treatment, as most of it is quite benign. And there lies the risk. People subscribe to and participate in a treatment plan that has no beneficial effects whatsoever beyond a possible placebo effect, and during that time they could have been on a proven and reliable medication like Plaquenil. The disease ends up running rampant, and it can cause irreparable damage.

    Most of the people who promote these supposed treatments, prey upon people who are scared, and feel like they have no other alternative. It's misleading to the point of being criminal in my opinion. Stick with a proper rheumotologist and a scientifically/clinically proven method for keeping Lupus in check. Please let us know how things go for you and your daughter. Once again, welcome to our group.

    Rob

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    :lol: Thank you all sooo very much , I have done some research and really was just curious, have not heard many good stories and need to get her to the specialist that I see ..that I have put off for a bit for myself.. Then we will see ..obviously she will start good vitamins etc. She has always been good with vitamins but we will take it one day at a time..for me I need to look into some more things. I have not been on anything for some time and things seem to be getting worse..i have really dry eyes lately which researching is sjor's ..i also have migraines and have kept up with MRI's..but the joint pains are getting more severe and I just had such bad luck with the meds at first I am very scared of what to try...and now want to make sure she comes first as we have no coverage as well. I appreciate evrything you all have said, and I am soooo very greatful to have found this site....
    A mother watches her daughter sleep, touches her face to say..sleep my baby, free from worry, free from pain...

    Alberta Mom

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    Hi Alberta Mom,
    It sounds like you do have Sjogrens along with the Lupus. Have you ever been on Plaquenil? You can also ask the doctor about Rystasis drops for your eyes. I think that your daughter should also see a specialist, a Rheumatologist along with you. I just feel bad for the both of you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Default Hi

    Just to say hello and welcome....sending you love n hugs.

    Angel.xxx

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