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#lupusnephritis

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Here it is, my very first ever Lupus YouTube video! Link is in bio. Please like, subscribe, and share πŸ’œ #Lupus #LupusAwareness #LivingWithLupus #LupusNephritis #YouTube #YouTubeRookie

If there was a modern woman with the issue of blood her name would be Bethany Lauren Myles and her issue would be Lupus Nephritis of 21 years. July 2016, I sat on hemodialysis for 3.5 hrs three times a week after the failure of my kidney transplant of 10 years. Unsure of how my life would get back to the place of freedom I once knew. Lost, confused, broken, and living in place that was not my home. I believed that moment was temporary.
Knowing that my life didn't end there; I prayed, cried, and got deeper in Jesus. He sent me back to work with the little strength I had. There was good days, bad days, days when I had to fight my reality, fight distractions, stay focused, inspire myself, hold back the tears, smile when I wanted to scream, and keeping going when I wanted to give up.
A year later happy, at peace, working two jobs (because I can) and living independently. I sit poolside surrounded by some of ATL's dopest young entrepreneurs. I have everything to smile about but laughter is my favorite medicine.
When Jesus said "Daughter, your faith has made you well. Go in peace, and be healed of your affliction." Mark 5:34 He is talking about me and he is talking about you. You may not have an affliction of sickness but there is some aspect of your life at dis-ease. I am hear to tell you; your healing is tied to you getting deeper in Jesus, He will honor your faith guide you and make you well. Seek after Him and you will be laughing with me. Be blessed my sister and brother. πŸ’‹ July 2017 πŸ“Έ: @thomdarnell

Through the eyes of a tough, self-determined, and a faithful young woman. πŸ’œπŸ¦‹πŸ™πŸΎ#lupuswarrior#staystrong#inspirationtoothers#lupusnephritis#knowlupus

Received some much needed GOOD news at the doctors office this week! As I've mentioned, having Lupus Nephritis lV my kidneys are under attack and not wanting to function properly causing extra protein spillage. A couple weeks ago my protein spillage count was in the 8,000's!!! As of this week, that number has come down to the 500s WHICH MEANS my body is responding well to the treatment!! It's working! I'm halfway done with chemo, 3 treatments done and 3 more to go! After chemo we continue a different type of treatment but hopefully no more IV infusions! #happydance #goodnews #lupusnephritis #lupus #stupidlupus

I’m happy to say I’m going to start posting makeup videos on YouTube again starting this next month😊 I began my channel and then my health went south, fast. I have Lupus and found out I have class 4 Lupus Nephritis. Basically my own immune system has been trying to shut down my kidneys. I had a biopsy done and am on some intense immunosuppressants & high dose steroids. I’ve been focusing on my health 24/7 these past 6 months and I’m excited to try to start filming again :) so stay tuned for next month! #youtube #makeuptutorial #snjbeauty #lupus #lupuswarrior #lupusnephritis #kidneydisease #lupuswarrior

Aww my heart goes out to Selena Gomez! As a lupus sufferer myself this is always something I fear. Luckily Selena Gomez is recovering and it's fantastic that she is raising awareness. The more awareness raised the closer we may get to better medication and even a cure. 😍#lupus #sle #lupusnephritis #selenagomez

Props to my nurse for not making this painful. #ChemoSession4 #Cytoxan #Lupus #LupusNephritis

Yesterday I was diagnosed with #lupusnephritis after spending almost a week urinating blood and experiencing pretty intense flank pain. I was referred to a #nephrologist that was able to get me in early September. I'm fearful, but thankful that I have an answer to my ongoing kidney issues now. But that's only the first step, as anyone with a chronic condition knows.
I still can't get much food in my system, as I have no appetite & get extremely nauseated when I do eat. But I'm trying my hardest.

I am the youngest of four and I thank my parents for having multiple kids. I have had the conversation of kidney transplant with my siblings but nothing more than that. I pray it never goes beyond that. But how wonderful is it to have friends that would give of themselves so selflessly to save your life. I pray for #selenagomez and #franciaraisa. There are times when friends become family, this is one of those times. #thelupusdiaries #lupusnephritis #kidneydonor #thegiftoflife #healing #friendsturnedfamily

MOST RECENT

2011 - Queenstown. An amazing holiday in one of the places I grew up. I loved being your tour guide here. I wish the holiday was longer. I'd love holding you close when it was cold outside. It was always cold. I'm glad you saw this part of my life my honey.

Do you miss me like I miss you hun? I still can't hold my tears back when I think of you. You're in my mind every second of every day. I know I should be getting better as days go by but how do you mend a broken heart? You don't. Because you can't.
There's no amount of time that can pass that will heal this pain. You are always a part of me. Even in hospital I had to come to terms with what was happening to you. I remember when you were leaving me I lay next to you and held your head in my hands and kissed you on the cheek and I said to you, 🌹"I know you're tired honey. I know you want to get some rest. I know you want to hug and kiss me like you use to. My Ben, I know you want to tell me you love me more than anything else in the world. But it's ok my love. I know already. You can rest hun. You don't have to fight anymore. It's ok to sleep. I love you so much. I'm sorry."🌹 Then your pulse slowly faded away. You were gone. No more pain. No more tests. No more anything. Anymore.
Rest in peace my angel. I will see you again. Missing you dearly my love.

#rememberben #legacyimage81 #iceskating #icerink #devotion #lupus #love #angel #heaven #queenstown #lupusnephritis #lupuswarriorben #truelove #sleΒ  #thaigirl #angel #missingyou #Iloveyou #lovinghusband #beauty #tribute #autoimmunedisease #gonetoosoon #restinpeace

I’m happy to say I’m going to start posting makeup videos on YouTube again starting this next month😊 I began my channel and then my health went south, fast. I have Lupus and found out I have class 4 Lupus Nephritis. Basically my own immune system has been trying to shut down my kidneys. I had a biopsy done and am on some intense immunosuppressants & high dose steroids. I’ve been focusing on my health 24/7 these past 6 months and I’m excited to try to start filming again :) so stay tuned for next month! #youtube #makeuptutorial #snjbeauty #lupus #lupuswarrior #lupusnephritis #kidneydisease #lupuswarrior

Here it is, my very first ever Lupus YouTube video! Link is in bio. Please like, subscribe, and share πŸ’œ #Lupus #LupusAwareness #LivingWithLupus #LupusNephritis #YouTube #YouTubeRookie

In case you missed our radio interview last night with Lady B promoting #sufferinginsilence. #no_moresecrets469 #tic1995 #lupus #lupusnephritis #kidneydisease #cancer

2008 - Together since 2000. We decided to move from Bangkok to this foreign land. The harsh sun from this country caused your first flare and your diagnosis. Lupus would be part of our lives in less than a year. It changed everything... My lupus warrior wifee...be safe honey. Be warm. Be comfortable. You're still missed and loved unconditionally. You're not a memory. You are still alive in my life and you give me breath each day. I cherish everything I am because of you. I love you my angel.

Thinking of you every day. XXXOOOπŸ’•πŸ’πŸ˜”πŸ‡ #rememberben #lupuswarrior #legacyimage79 #devotion #hospital #lupuscure #lupusnephritis #thailand #snow #mountain #lupuswarriorben #missingyou #dedicationtomywife #truelove #sle #thaigirl #lovinghusband #beautiful #beautifulwife #autoimmunedisease #gonetoosoon #restinpeace

To my wifee. To my Ben. I wish we all could have one more day of everything we love. One more moment of joy. One more scoop of icecream. One more ride on the roller coaster. One more day off. One more minute in your lunch break. One more hour with the one you love. One more hug. One more kiss. One more word.

What would your one word be?? My lupus warrior wifee...be safe honey. Be warm. Be comfortable. You're still missed and loved unconditionally. You're not a memory. You are still alive in my life and give me breath each day. I cherish everything I am because of you. I love you my angel.

Thinking of you every day. XXXOOOπŸ’•πŸ’πŸ˜”πŸ‡ #rememberben #lupuswarrior #legacyimage79 #devotion #hospital #lupuscure #lupusnephritis #thailand #snow #mountain #lupuswarriorben #missingyou #dedicationtomywife #truelove #sle #thaigirl #lovinghusband #beautiful #beautifulwife #autoimmunedisease #gonetoosoon #restinpeace

In all seriousness, Lupus is terrible. Ever since i was first diagnosed, life has been hard. I made this design as a tribute for not just me, but everyone out there going through life with this terrible disease. My heart goes out to all of you and your close ones affected by this. I truly wish you the best. Take care. β€’
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#lupus #nephritis #lupusnephritis #design #graphicdesign #butterfly #rainbow #heart #love #creative #purple #sparkle #takecare #lotsoflove

Pain management has me on a patch called fentanyl. It's pretty strong and I'm supposed to change it every three days. I've never really been on a daily pain medicine regime. It has me in a daze and I hate the feeling. I hope that feeling passes soon so I can feel normal. Also I hate the side effects that narcotics has on my face 😞
#narcotics #painmanagement #dazedandconfused #fentanyl #painpatch #72hours #sideeffects #everyday #miami #florida #girlswithtattoos #girlswithpiercings #lupuswarrior #lupusnephritis #sle #rheumatoidarthritis #renalfailure #dialysispatient

My meatless meals the past few days. I've found the joy of quinoa and its pretty awesome. Hella easy and quick to make and super filling! First one is 1 cup cooked quinoa, green pepper and 1/2 cup black beans with Sriracha pepper and grapeseed oil. Second is "fried rice" : 1 cup cooker quinoa, 3oz carrots, and roughly 3 oz zucchini, and egg whites in Sriracha and garlic oil with ginger, turmeric, and chili powder. #MeatRestrictions #ProteinCuts #KidneyDiet #KidneyDisease #StopProteinuria #Quinoa #Inspiration #FoodInspiration #Food #FeedMe #AutoimmuneDisease #LupusNephritis #LupusWarrior

2015 - My beautiful lupus warrior. My angel. My wife. Still going mad missing you from my life. There is no great future without you near me. It changes everything. I should have taken you home to your family. We shouldn't have gone to a western hospital. They took nearly 2 weeks to diagnose you with lupus even after I had told them in the first instance that you had lupus since 2009. Nobody listened.
They saw but didn't look.

They didn't even check your previous records from the last hospital. No translators were called for you before procedures. I asked them to do this. They acknowledged and said that they would. I have recorded everything.
They never called me before your MRI, CAT, ECG or ECHO. They said they would. They never did. They failed you so this is not the end. I have a new drive. New purpose. I won't fail you like they did. I'll never stop.

Thinking of you every day. XXXOOOπŸ’•πŸ’πŸ˜”πŸ‡ #rememberben #lupuswarrior #legacyimage79 #devotion #hospital #lupuscure #lupusnephritis #thailand #snow #mountain #lupuswarriorben #missingyou #dedicationtomywife #truelove #sle #thaigirl #lovinghusband #beautiful #beautifulwife #autoimmunedisease #gonetoosoon #restinpeace

Fuck Lupus #fucklupus πŸ’ͺ🏾😎 PLEASE READ BEFORE!
I am writing this because I feel embarrassed of myself, I don't like my face because is swelling I don't even want to go out .. but I have to do it because I know it's not for ever and I now that's maybe could helps another Lupies like me
A week ago, the doctors told me that I have to cancel my holidays . I was planning ing to go to Bali for a month by myself it's my dream and I will do it one day I don't know when but I will .
I was planning this trip for ages, booked my hotels, research.. I suppose to celebrate my 25th bday there , in the paradise but I couldn't make it because of Lupus,(my partner)
This fucking disease is following me since I'm 17 years old and it's been so difficult to fight every single day with your own body.
There is days where you only wants to stay in bed, you are tired your body is in pain and you don't know why. You are even tired for sleep.
This flare up is affecting to my kidneys, they are not working properly and the doctor decides to give me Steroids to control it .
I HATE STEROIDS, !! Make you feel crazy, tired, bad mood all the time and the worst for me your face is swelling is fucked and I looked ugly ( even though people's says u don't look that bad... cmon I have a mirror, I know How I looks like)
But Let me tell you something Lupus, I'm here, Ain't no going anywhere I will be here for a long.
As much difficult you make me everything much stronger I AM!
I'm not going to Bali for now but I will safe more money to spend on me in massage and cocktails in the beach 😎😎 #fucklupus #lupuswarriors #fucklupus
Lupus can we be just friends??? Please ! πŸ™πŸΎ

I would never wish Lupus on anyone...ever.
But having a powerful celebrity with a strong voice and many people who admire her has clearly caused a ripple effect. Other powerful celebrities with strong voices are reaching out to her and therefore...reaching more people.
I wish @selenagomez the best of luck...and also know that because of her experience, more people are becoming aware of what this cruel disease is and can do. πŸ’œ β€’ πŸ’œ β€’ πŸ’œ β€’ πŸ’œ β€’ πŸ’œ β€’ πŸ’œ β€’ πŸ’œ β€’ πŸ’œ β€’

2015 - Hong Kong.
My angel. I'm still here. Still honoring you everyday. Dedication of merit...for you and your legacy and for those warriors fighting battles every second of every day.
Thinking of you.XXXOOOπŸ’•πŸ’πŸ˜”πŸ‡ #rememberben #lupuswarrior #devotion #hospital #lupuscure #lupusnephritis #lupuswarriorben #missingyou #dedicationtomywife #truelove #sle #thaigirl #lovinghusband #beautiful #beautifulwife #autoimmunedisease #gonetoosoon #restinpeace

My beautiful lupus warrior. My angel. My wife. Still going mad missing you from my life. There is no great future without you near me. It changes everything. I should have taken you home to your family. We shouldn't have gone to a western hospital. They took nearly 2 weeks to diagnose you with lupus even after I had told them in the first instance that you had lupus since 2009. Nobody listened.
They saw but didn't look.

They didn't even check your previous records from the last hospital. No translators were called for you before procedures. I asked them to do this. They acknowledged and said that they would. I have recorded everything.
They never called me before your MRI, CAT, ECG or ECHO. They said they would. They never did. They failed you so this is not the end. I have a new drive. New purpose. I won't fail you like they did. I'll never stop.

Thinking of you every day. XXXOOOπŸ’•πŸ’πŸ˜”πŸ‡ #rememberben # #devotion #hoapital #lupuscure #lupusnephritis #thailand #island #samet #thailand #lupuswarriorben #missingyou #dedicationtomywife #truelove #sle #thaigirl #lovinghusband #beautiful #beautifulwife #autoimmunedisease #gonetoosoon #restinpeace

I've been wanting to do this for years! Finally found the courage to start filming. #YouTube #YouTubeRookie #Lupus #LupusAwareness #LupusNephritis #LivingWithLupus #LupusSucks

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