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Please kindly help us share Tracey’s fight to seek remission for SLE

  • Sometimes you just give up.

      17 December 2025

    I wanted to update you all on our journey and how easy it is for us to give up and not know where to go or turn and we just kind of go… “ oh well” what can I do. The walls are up.

    Since my return from the states NZ would not fill the script from my specialist. The cost to fight just made everything impossible. I gave up… I put my self back into the public system and spent the last two months being robbed of my quality of life again as they just passed me around and promised waiting lists of up to two years.

    I am stuck ! So I decided to flip the mindset and decided I could keep going down hill or I could just get on with it.

    The large stent has been removed two weeks ago and it has made some improvement but I was discharged and not given any further plans. Told if you still can’t eat come back to ED.

    So for now…. My hands are behind my back, and I am helpless as where to from here.

    In New Zealand it is really a case of who has the most money survives.

    I thank you all from the bottom of my heart for getting me this far and making my life so much better then it was before and yes, I am feeling much better then before I embarked on the search and treatment for a quality of life. It has ment so so much to me.

    Little steps encouraged and helped by so may of you has made the biggest difference and I would hate to think where I would be if I didn’t see Dr wallace. He is life changing.

    I tired… this flight right now is to hard.

    Thank you for just being with me. 🩷

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  • We continue the journey,

      30 September 2025

    Thank you all so very much to date for all your love and support towards my journey to obtain remission for my lupus.

    I will update you all soon on the amazing help I received in the USA.

    We are just waiting on results which I will be delivered with next week.

    Forever greatful

    Hugs Tracey

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  • Two days to go…. And I’m off. Thank you all so very much xx

      11 September 2025
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    Well … time is getting closer. In 2 days I leave to America to be seen by a Man with over 50 years experience in autoimmune. I am soo soo thankful to each and everyone of our friends and family for making this possible.

    The relief I’m feeling to be seen and heard is overwhelming as been a long time coming and timing is perfect as I’m just not sure how much left of me can take much more as I get weaker and weaker. I am all but skin and bone and i truly feel they have the solution to help my body to stop attacking itself. ( its hard trying to hold weight as at the moment the body is burning in overdrive .

    Well puppy is suspecious and knows im not well as he is always right by me.

    Two more services to conduct then its zip up my bag and head to the airport.

    Im ready. 🩷

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  • I’m broken.. I have no words.

      2 September 2025

    Today I broke. Today the tears flowed.

    Today is just not a good day and that’s ok. Tomorrow I will pick my self back up.

    🩷😥

    I shared a video but not sure how to upload it here I will update with a link when I figure it out.

    Thank you all so much for helping me fight and fight hard.

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  • Test results in !

      27 August 2025

    Just a little update on my lupus journey. The past week has been a juggle with work and further tests, and I finally got the results of my barium swallow. It turns out my digestive issues are more connected to my SLE than we thought. I've been diagnosed with esophageal dysmotility, which means the muscles in my esophagus aren't working correctly. For someone with lupus, this can be a tough complication, as the inflammation and immune system activity can directly affect these muscles.

    This new diagnosis adds more to my medical file for Dr. Daniel Wallace. Dr. Wallace is a well-known specialist and a clinical professor of medicine, with a career spanning over 40 years focused on lupus and other rheumatic diseases. He is the medical director of the Wallace Rheumatic Study Center and has a practice that includes caring for a large number of lupus patients. Having this new piece of information to share with a specialist of his caliber is a huge step forward.

    I leave on the 14th of September to LA and are to preset to his clinic in Beverly Hills the following morning at 9am for it to all begin. To see him in person has been made possible by you all and im just so very thakful for all the love and support, donations and fundraising. You have all given me so much hope.

    THANK YOU 🩷

    Im so so happy he accepted us as a case. Some things just fit into place. God is so good! 🩷

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  • Exciting breakthrough today. 🥰🙏

      19 August 2025
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    Quick update on my lupus journey! If you've been following along, you know I've been battling some significant digestive challenges, and we've finally made a breakthrough. Today I had a barium swallow test after waiting so so so so long I decided to go private. This choice made was so worth it for me which is helping us understand the intricate link between my brain and lupus, and how this connection has been affecting my digestive system. It's truly incredible how everything is connected, and after so much time searching, having these answers feels like a monumental and incredibly positive leap forward. Feeling so grateful for this progress! to see and watch exactly what’s happening in real time was such a learning experience as well as a huge eye opener. I am so so close to being in front of the experts in a months time and to have this information to back up all my other results is the key piece to the puzzle. 🩷🩷🩷

    Thank you all so much for your continued support.

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  • Thank you to our community for providing so much hope.

      9 August 2025

    I want to say thank you so so much as always. A goal that seemed so far out of reach is now so so close to becoming reality.

    I’m booked to leave 14th September 2025 for 10 days for state 1. So to not make it so daunting I decided to break down into small goals and know that each time we achieve a massive milestone means so so much to me and the future to wellness being achieved. 🩷🩷

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  • I’m so so close… I appreciate all the help you all have given me 🩷🩷

      8 August 2025

    It’s moments like today that again while thankful the medical treatment i receive here in hospital and how amazing they are but to hear constantly … we don’t know why? Is the reason why I seek for answers from more specialised professionals and my fight to seek treatment at UCLA health in the USA next month.

    I’m so so so blown away by all who have made this possible and with the funds received I am able to have an “Avise” blood work test which is specificly for autoimmune. Something that is not offered here.

    I am so close to reaching milestones to be able to fund this journey and I’m just so thankful for all of you who have helped make this happen for me.

    I’m not giving up… I’m about $5000 nz off the min and together with savings and other fundraising I will be able to meet the $10,000 us required to see the specialist and have the first stage of testing completed. THANK You!! 🩷🩷🩷

    If you could help me by sharing and creating awareness for lupus would mean so much to me. Every tiny little contribution in all ways can make such a big difference, not to just me but others also.

    Hugs and Blessings xx

    I promise to back at the ward by 7am. 🙂🙂🤦‍♀️😜

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  • I’m so so close… I appreciate all the help you all have given me 🩷🩷

      8 August 2025
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    It’s moments like today that again while thankful the medical treatment i receive here in hospital and how amazing they are but to hear constantly … we don’t know why? Is the reason why I seek for answers from more specialised professionals and my fight to seek treatment at UCLA health in the USA next month.

    I’m so so so blown away by all who have made this possible and with the funds received I am able to have an “Avise” blood work test which is specificly for autoimmune. Something that is not offered here.

    I am so close to reaching milestones to be able to fund this journey and I’m just so thankful for all of you who have helped make this happen for me.

    I’m not giving up… I’m about $5000 nz off the min and together with savings and other fundraising I will be able to meet the $10,000 us required to see the specialist and have the first stage of testing completed. THANK You!! 🩷🩷🩷

    If you could help me by sharing and creating awareness for lupus would mean so much to me. Every tiny little contribution in all ways can make such a big difference, not to just me but others also.

    Hugs and Blessings xx

    I promise to back at the ward by 7am. 🙂🙂🤦‍♀️😜

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  • A very special thank you 🩷 💃

      6 August 2025
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    Last weeks Club night for the HBC rock n roll club was a special night for our club. We held a fundraiser to give back to someone truly amazing in our local community.

    Together, we raised $1,000 to support Tracey Brown's treatment for lupus.

    We were honoured to have Tracey and her husband attend the event, and even more thrilled to see them take the floor and show off the moves they learned at the club.

    Tracey is an incredible woman who gives so much to our community through her work as a funeral director. It was truly heartwarming to see our club members rally behind such a worthy cause.

    Thank you to everyone who came along, donated, and danced the night away for Tracey. 💜

    Thank you all from the bottom of my heart.

    And for your incredible support.

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  • The invisible Burden … the parts you can’t see. 🩷🙏

      28 July 2025
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    Living with Lupus (SLE), is an invisible war fought daily. This chronic autoimmune disease tricks the body's immune system into attacking healthy tissues, causing widespread inflammation and damage. But the true battle lies in the unseen nature of the illness, making it incredibly difficult for others to see and to grasp its severity.

    One of the most insidious aspects of lupus is its invisibility. Unlike obvious ailments, the debilitating pain, crushing fatigue, and internal organ damage are hidden. We might look fine on the outside, leading to frustrating comments like "You don't look sick!" These remarks erode our spirit, making us feel isolated and misunderstood. We often downplay our struggles, convincing ourselves that "others have it worse," a coping mechanism that, while resilient, often prevents us from getting the rest or medical help we need. We fight through.

    The physical toll is unpredictable. profound exhaustion. This isn't just "tiredness"; it's a deep, unyielding fatigue that sleep can't touch.

    Beyond the physical, lupus brings significant emotional and mental strain.

    Despite these immense challenges,we develop incredible resilience. We learn to adapt, find coping mechanisms, and advocate for ourselves. We celebrate good days, rest when our bodies demand it, and draw strength from communities of others . While the struggle is undeniable, so too is our spirit's capacity to endure and strive for a full life, even with the invisible burden of lupus.

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  • Our special friends

      22 July 2025
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    We all know how intuitive our fur baby’s are and mine are no exception.

    Little Louie is a 2 year old Cavoodle and he always senses sometimes even before I realise if I am going to have a sudden temp flare or my body decides to crash with chronic fatigue.

    He comes over and doesn’t leave my side. He stays with me and always provides the best snuggles.

    Animals are truly a blessing when we are not well.

    Louie looking after me after a day at work serving families as my temp spiked making me a little weak. Couch cuddles it is.

    🙂🐶🐾

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  • A special celebration.

      21 July 2025
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    To everyone who has donated to my Givealittle for my treatment plans for my SLE lupus, thank you from the bottom of my heart. Every single contribution, no matter the size, means the world to me.

    This journey has definitely had its ups and downs, but knowing I have your support and generosity gives me so much hope for remission. It truly means the world to us.

    We had a special night Saturday night where I got to glam up and feel amazing to celebrate my husbands achievements with the NZ walk of fame 15 year anniversary.

    I crashed the next day but it was all so worth it. A special thank you to a friend and make up artist who hid all my sickness for the night with her incredible talents as a make up artist. I felt truly beautiful. Thank you Celeste.

    I little photo of the before and the next day how lupus can suck the life out of you. Hopefully soon a will glow for ever and eternity 🥰🙏

    So grateful to you all for your kindness

    Hugs

    Tracey

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  • Today I share my rawness.

      15 July 2025
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    The smile, the smartly dressed funeral director, make up to hide the rashes, a fringe to cover the fading facial features as I become thinner and thinner. The tears as I look in the mirror wishing for the woman I once was to look back at me.

    Today that girl is lost. But I will find her again. I will wake up tomorrow, straighten my crown. Put my make up on and go and love on all those who call upon me to walk with them and beside them as they farewell a loved one.

    This is my purpose. To be there for others in a time of need. To fill my cup. My reason to fight. For others suffer their own pain and if I can help them take just a little of that away. I have carried some of that burden for them.

    Today it’s ok for me to have a day where I don’t want to carry my own burden anymore. 🩷 I flight to be well.

    Love Tracey

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  • Exchange rate challenges make it a little unknown

      14 July 2025

    I have spent the day diving deeper into the research of what kind of costs we are going to be facing. With the exchange rate we know that what ever each procedure or specialist I see it will be double the NZ dollar. I know here is NZ each time I require a balloon dilation done via a Gastroscopy depending on each time I have been paying out $2000-$2700 every few weeks to assist with the stretch of the joins from surgery and adhesions to allow food to pass through. I have been lucky that when admitted to hospital these have been done at the time but as an outpatient it is taking 4-6 weeks and I have not been able to wait that long so my only option was to pay privately for each treatment only waiting a couple of days at the most so I was able to find relief quickly.

    I'm so grateful for all the help and support shown to me at this time to seek alternative treatment in the USA from those that may have a different perspective or options to aid me back to a " my old normal ". as I can't be sure of exact costs involved and only an go by a ball park costs, I made a change to the end goal as I am just so thankful for the assistance to aid in anyway at all. absolutely life changing to know that in just a short time I get to sit face to face across from someone who just may have the answer we need and the treatment plan and advice to truly make a difference.

    The hope I am feeling is that can't explain.

    all my love and gratitude to you all.

    Tracey

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  • Your support has blown me away thank you

      13 July 2025
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    Thank you to you all for your messages of support your contributions and all the amazing information that has been shared with me.

    It has been a though 24 hours and I think for the first time I let my guard down and allowed my self to truly feel. Some tears were shed for I felt a huge sense of relief that I was being heard. Thank you.

    We have made a booking and leave NZ 14th September 2025 to explore the possibilities. I have been given some amazing contacts and now making an informed choice for where I shall receive my care. Mayo clinic seems to be an even better option then our original thoughts of UCLA and a huge thanks to Marty a Dr in North Carolina for doing some ground work for me.

    Today my hair continues to leave me due to lack of nutrition and my blood sugars are causing me to become a little wobbly but we soldier on. Well I’m so lucky I have enough to loose. Never ever did I think I would feel so selfish for there are so many others worse off then me. Lupus is a life sentence but I’m so thankful that we have resources to get help and to you all for helping to make it possible for me to kick this awful illness back into remission where it belongs.

    From the bottom of my heart. Thank you x

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