Page 2 of 2 FirstFirst 12
Results 11 to 16 of 16

Thread: A little lost; A little confused, but happy to find this place :)

  1. #11
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default

    Quote Originally Posted by StarPhire View Post
    Steve, may I ask, when it came back was it a slow process? As I had stated I just recently started having joint pain again, along with some bone pain and a general feeling of yuck. I'm sure it's different for everyone; I just want to hear from others what they have experienced.
    ~Blu
    i never actually stopped taking my medication.
    i had reduced it dramatically, and with my doctors guidance, we were looking at stopping some more at my next appointment.

    i found that i did not hurt much more, rather the fatigue was more severe.
    then the aches came later.

    as you said everyone is different....

  2. #12
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    Hello and Welcome to our family;
    I do hope that you are able to find a good rheumatologist (unfortunately, too many of them could care less about us!) and/or primary physician who takes you and your symptoms seriously. It is important that you get back on your meds as Lupus can run rampant without them. Also, do be VERY careful about trying herbal remedies. Many of them can aggravate our symptoms and can even bring on new symptoms.
    You are right, ignoring this disease and pretending that it did not happen is a very bad decision; one that could be fatal. Please do read through all of our forums to find some of the ways that our members have written about to deal with flare ups, to help avoid future flare ups, and how different medications work for different symptoms.
    You must remember that Lupus does not affect any of us in the same way, so our treatment regimen and medications have to be tweaked for each of us personally. Just as Lupus affects us differently, so are our periods of remission different and our flare ups are different.
    We are here to help you to learn as much as you can about this disease and how it affects you so that you can manage it as best you can. I wish you the very best and I am glad that you decided to join our family.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  3. #13
    Join Date
    Dec 2012
    Location
    Austin, TX
    Posts
    16
    Thanks
    13
    Thanked 4 Times in 4 Posts

    Default

    Quote Originally Posted by jolynnhughes View Post
    Hi Blu! Welcome aboard. Do you mind sharing the name of your doctor? I too live in the DFW area, and I am looking for a new, good rheumatologist. I've been to two so far, and while I like certain things about each one, I'm not happy with either overall. It sounds like you were diagnosed pretty quickly. Trust me, that's a blessing. I'm still trying to get answers, and I've been sick for four years now.

    Glad you found us, and I hope you get the help you need so that you can continue to practice your craft/passion.
    ok, I'll try this again, lol. For some reason I'm not seeing my replies posting. My PCP/GP was Dr. John Richmond in Dallas off Ross. (HealthCareClinics) He was the Doc that diagnosed me. The Rhumy was at Plaza Rheumatology in FT worth. They are the ones that sent me away. I never did find a different Rheumatologist before I've moved back to Austin. I believe Dr. Richmond could help you find one, though. He was really great.

  4. #14
    Join Date
    Dec 2012
    Location
    Austin, TX
    Posts
    16
    Thanks
    13
    Thanked 4 Times in 4 Posts

    Default

    Quote Originally Posted by Saysusie View Post
    Hello and Welcome to our family;
    I do hope that you are able to find a good rheumatologist (unfortunately, too many of them could care less about us!) and/or primary physician who takes you and your symptoms seriously. It is important that you get back on your meds as Lupus can run rampant without them. Also, do be VERY careful about trying herbal remedies. Many of them can aggravate our symptoms and can even bring on new symptoms.
    You are right, ignoring this disease and pretending that it did not happen is a very bad decision; one that could be fatal. Please do read through all of our forums to find some of the ways that our members have written about to deal with flare ups, to help avoid future flare ups, and how different medications work for different symptoms.
    You must remember that Lupus does not affect any of us in the same way, so our treatment regimen and medications have to be tweaked for each of us personally. Just as Lupus affects us differently, so are our periods of remission different and our flare ups are different.
    We are here to help you to learn as much as you can about this disease and how it affects you so that you can manage it as best you can. I wish you the very best and I am glad that you decided to join our family.

    Peace and Blessings
    Namaste
    Saysusie
    Hello Saysusie, Thanks for the welcome! First I must be clear about something I feel very strongly about; as someone who has studied herbal medicine for many many years, I know there are NO safe immune suppressors that can be used for Lupus. I have searched and searched. There are immune suppressors out there, but, I would never recommend using them to anyone without the very close supervision of a doctor. I have had to stop taking many herbs that I used regularly, for the sheer fact that many and most "common" herbs will boost the immune system and cause major issues. The sad fact is that herbal medicine, as good and potent as it can be, is not the answer for this disease. Not as of yet, anyway. This is sad to me because this is my way of life, my "religion" (if you will), and has been since I was very young. So, Lupus really did a number on me, I suddenly had to see doctors, go to hospitals, take medication, etc.. That was something not only very foreign to me, but completely against everything I believed in. As an herbalist I have to stress to people NOT to play around with this. It is NOT a common cold or a simple case of depression, it's simply to complex of a disease, and there are very few Herbal Physicians and even fewer that know this disease well enough to treat it. As a matter of fact, I know, they are likely to send you away with the advice of going to a specialist. I just felt like I should put my 2 cents in on this subject. I hope I didn't offend anyone.
    Thank you for your advice Saysusie, I'm presently working n finding a Rheumatologist in my area, as well as a GP/PCP.

    Peace~ Blu

  5. The Following User Says Thank You to StarPhire For This Useful Post:

    steve.b (12-11-2012)

  6. #15
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default

    i would like to commend you on your approach to your desease.

    i know a few herbalists, and they still believe they can heal me.
    it is encouraging to me to hear that you, (as a herbal specialist),
    realise the reasons behind herbs not working.

    this site is dedicated to the memory of lauri.
    say suzi's daughter.
    she died from complications caused by her lupus, after trying alternative therapies, instead on traditional western medications.

    no-one here is anti herbal.......
    but this site is very strong on not stopping western medicines.

    i am saying this to help you understand were we (this site) is comming from.

    i must also say that you are very very welcome here.
    i am personally happy to see you as a family member here.

    thank you again for your honesty in openning up to us.

  7. #16
    Join Date
    Dec 2012
    Location
    Austin, TX
    Posts
    16
    Thanks
    13
    Thanked 4 Times in 4 Posts

    Default

    Quote Originally Posted by steve.b View Post
    i would like to commend you on your approach to your desease.

    i know a few herbalists, and they still believe they can heal me.
    it is encouraging to me to hear that you, (as a herbal specialist),
    realise the reasons behind herbs not working.

    this site is dedicated to the memory of lauri.
    say suzi's daughter.
    she died from complications caused by her lupus, after trying alternative therapies, instead on traditional western medications.

    no-one here is anti herbal.......
    but this site is very strong on not stopping western medicines.

    i am saying this to help you understand were we (this site) is comming from.

    i must also say that you are very very welcome here.
    i am personally happy to see you as a family member here.

    thank you again for your honesty in openning up to us.
    Thank you. and understood. NP. That is such a tragedy. I just wish there was more of a joint effort on both sides. I have seen much more happening with it lately, but not enough in my opinion. Not just for Lupus or AI, but all around. But, there isn't and we have to deal with what we have in the best, most logical and safe way. And I'm so sorry what happened to your daughter Saysusie. It angers me that people that call themselves "Healers" or Wise Women can be so damn irresponsible with someone's life. We are supposed to help people, and admit when we cannot, and I believe in the case of Lupus in particular, we really can't. Human beings are not lab-rats in which we can attempt to relearn an old way. Sadly, I believe, we lost much of the knowledge we once had ; it became convoluted through history and changing times. We are not supposed to be snake-oil salesman, either. There is no Panacea for human illness. We must cope and trust in the ones with the experience.

    ~Blu

  8. The Following User Says Thank You to StarPhire For This Useful Post:

    steve.b (12-11-2012)

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •