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Thread: so happy this group exists

  1. #1
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    Default so happy this group exists

    Hi,

    My name is Elizabeth and I'm 24 and I felt like I was in a solo no man's land until I found this site yesterday. There are no support groups meeting in my state and none of my family or friends have any form of auto-immune disease so it's been a lonely road so far.

    I got diagnosed with lupus January 24th while in Cape Town, South Africa. Since then, I have been at home with my parents since February recovering (it turns out I had some extensive kidney involvement).

    Part of my isolation is that I don't have health insurance (right now (I was supposed to be in Cape Town for 6 months so I cancelled my US health insurance and of course they don't want to pick me back up now that I have this lupus diagnosis so tell all your friends and family not to do what I did no matter how healthy they think they are.) so I have not seen a rheumatologist at all because of how expensive they are. Even in South Africa, my diagnosis was based on an ANA score and the vast amoiunt of organ involvement and my joint swelling and pain.

    My nephologist told me not to be concerned that it's something else since all my labs are consistent with active lupus but outside of what I read online I have no idea what it really means to now have lupus.

    But I am so happy to have found you all and it's such a great help.

  2. #2
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    Hi Elizabeth!

    Welcome to the Forum! I'm so glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    I am SO sorry that you are going through such a hard time, especially with regard to your medical aid. :cry: Please know that I will be praying for you.

    Where in Cape Town were you staying? Were you diagnosed at a Hospital? If so, do you mind telling me which one? I'm asking you because I live in Cape Town! Despite your illness, I hope that you enjoyed your stay here in South Africa and I'm sorry that you had to leave early.

    Keep well and God bless!

  3. #3
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    Hi, Elizabeth - I have kidney involvement too - so do several others on the forum - and I know it's scary when you first heard the words. The good news is that with careful diet management, treatment and medication, kidney involvement can usually be managed very successfully. There are several treatment options available - which one your doctor chooses for you will depend on your medical needs, but if you have questions about any specific medicine or treatment, just post a question in the medications forum and someone will try to respond. If your nephrologist hasn't already set you up with one, I would really recommend getting with a dietician to help you plan your meals. Because your kidneys aren't working as well as they should, they may have trouble clearing your blood of waste products, so it helps to eat a diet that puts as little stress on your kidneys as possible. For most of us that means avoiding foods that are high in protein, sodium, or potassium, but your doctor might recommend a different diet for you. It can be hard to plan a healthy and balanced diet when you have any kind of special needs, so a dietitician or nutritionist can be a real help.

    There are some really good books available about lupus - it's not a substitute for a good rheumatologist, but since you already know you have organ involvement, the more you know about the disease, the better you will be able to manage it. You can probably find some of these books at your local public library, or the librarian can order them for you. The Lupus Foundation (www.lupus.org) is also a good source of information about lupus kidney disease.

    These are some of the better books available -

    The Lupus Book: A Guide for Patients and Their Families - revised edition 2005
    by Daniel J. Wallace (This is one book worth purchasing to keep available as a reference)

    Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life
    by Maureen Pratt, David Hallegua, Daniel J. Wallace

    The First Year - Lupus: An Essential Guide for the Newly Diagnosed
    by Nancy C. Hanger, Elena Massarotti

    Living with Lupus: The Complete Guide, Second Edition
    by Sheldon Paul Blau, Dodi Schultz

    Lupus : Everything You Need to Know
    by Robert G. Lahita, Robert H. Phillips

    Positive Options for Living with Lupus : Self-Help and Treatment
    Philippa Pigache

    Talking About Lupus: What to Do and How to Cope
    by Triona Holden

    Hope this helps! Again, welcome - I hope you find this place as warm and helpful as I do.

  4. #4
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    Quote Originally Posted by IloveHistory
    Where in Cape Town were you staying? Were you diagnosed at a Hospital? If so, do you mind telling me which one? I'm asking you because I live in Cape Town! Despite your illness, I hope that you enjoyed your stay here in South Africa and I'm sorry that you had to leave early.
    I loved Cape Town and was so very sad to leave as in they had to tell me I had to leave otherwise I would have battled my nephritis there. I was at Christian Barnard Hospital and the doctor was a pulmonologist named Dr. J. O'Brien who was phenomenal and thorough and in the end refused to charge me a thing. My boyfriend and I hope to come back to South Africa in the future since our trip was limited (never got to Stellenbosch and never went up Table Mountain and never went anywhere but Cape Town for the most part). I am happy to know there would be a lupus friend if our dreams did come true. Our original plan was to live in Cape Town for close to 4 months but that got cut down to 3 weeks when I got sick.

  5. #5
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    Welcome, Papillon!

    I, too, have had Lupus Nephritis, and things have turned around for me in the last year to the extent that I have been able to get off most of my meds. I wish you luck with your insurance woes.

    Glad to have you here!
    Missy

  6. #6
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    Hi Papillon!

    I'm SO glad that you enjoyed your stay here and sincerely hope that you are able to come back and visit soon!

    Christiaan Barnard Memorial Hospital is a very good hospital; both my Neurologist and my Spinal Surgeon are there, as well as my old Paediatrician!

    Keep well!

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