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Reflection

1/23/2020

2 Comments

 
​I'm sitting here reflecting (like we all do at the end and beginning of the year) and like always, my emotions are mixed, but I am happy. I made it to 2020! How thankful and grateful I am! On this journey, I've talked mainly about that one thing that affects my life most, Lupus. However, there have been so many other things that have affected my life on top of that. I know many times I may make it look as if having Lupus is easy. I just have to take some meds, rest, eat right and I'm straight! 

Lupus isn't that easy. Lupus isn't an illness that you can "prevent". Now can resting and eating healthier lower the chance of a flare? Of course! But sometimes, even when you do all of those things, Lupus is right in your face trying to make a point. The LupieGirl has not been perfect and that is the overall point of this post. 

I get asked all the time about my dating life and I am here to clear the air that I DON'T have one.

Trust, The LupieGirl longs to have bae be right there, supporting me and whatnot but as of right now, bae is non-existent. Dating is hard and I believe having a chronic illness makes things a tad bit more difficult. No worries though. I like it here. It may just not be the time and that’s okay. Many have asked me about marriage and children and I truly want all of that. But I need a guy that truly wants me, supports me and will grow with me.


In regards to my health and whatnot, let’s face it. I am sick. I don't move how I used to and I am doing better at accepting it. Most of this journey I have pushed many issues that I face to the back of my head, which only hides it for a while, which has a negative impact on my mental. The LupieGirl isn’t just therapy and support for other Lupies, but it’s been support and motivation for me too! I am trying to learn to face my issues and deal with them instead of "dealing with it another day".  I’ve been going to therapy and it is helpful. I get to unbox all my inner emotions that I don’t want to share with others. I don’t feel as if I’m complaining. My physical health is an up and down thing. One night, I woke up at about two in the morning drenched in sweat. I got out of the bed and just walked towards my dresser and BOOM…I passed out. I fell and knocked over everything that was in my way. Now looking back, it’s funny to me because I’m just like, “what the hell!?” but another part of me is like, “damn that was scary” and the last part of me is just like, “Your pressure is low, you need salt”. Dialysis has dried out my skin, the hospitals have bruised my skin, and I’m just trying to remember to take my binders every time I eat. My appetite is on the decline again and I’ve lost 60 pounds and still losing more. However, Prednisone has blessed my face giving it a soft, clear, “moonpie-ish” glow that I so appreciate.
​
The LupieGirl, Inc. Let me tell you! Having a non-profit has been tough all the way around—mentally, emotionally and physically. Believe it or not, what makes it difficult is not what you’d expect. To me, it’s actually people that have made it truly difficult for me, including myself. Having a non-profit is definitely not a walk in the park but it has been rewarding. Meeting Lupies and encouraging them to come out is my joy. I just want to help and inspire any way that I can. The Lupus “brunch” is coming. It is not a brunch this year. The event will now be called, The Lupie Legacy Awards. That’s what it’ll be for right now lol. May 17, 2020 is the day so mark your calendars! I’m so excited for what this year is going to bring. I know it’s going to be amazing…I can feel it. 

So far I haven’t been in the hospital (thank God) and I have truly just been living and taking it one day at a time. I’ve always worked tirelessly to make sure others were good but I often neglected myself. I am important. My health is important and if I am sick, how can I bless you with my bubbly self!? I didn’t really do the New Year Resolution thing but I am working harder to do better taking care of me…all of me—my mind, body and spirit. I hope and pray that your 2020 brings you everything that you’ve prayed for. 

2 Comments
Karlisha
5/19/2020 06:23:47 pm

Amen! It’s time we stop investing in the potential and start investing in the one who invest in us. The year(s) is not over yet so there is so many things that can still happen with health, love, etc. You got this and I love hearing about your journey. I pray for you daily!

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Aaron Hall link
11/16/2022 10:02:35 am

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    Did You Know?

     ​​An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.

    Factors that may trigger a lupus flare include infections, ultraviolet light, stress, some medications, environment with some still unknown.


    My first sign of Lupus is when I woke up one morning with The malar, or “butterfly” rash on one side of my face. Over a week span, it spread across my nose, elbows, arms and even my eyelids! I went and saw a dermatologist  who did a biopsy of the rash and my ANA came back positive, confirming that I had Lupus. I also went to a  Rheumatologist who also confirmed that I had Lupus.  

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About the LupieGirl

Lupus is a devastating disease that still is not discussed enough and many times misunderstood. We have to advocate past Lupus Awareness month and bring attention to this illness year round. Individuals are dying from complications of this illness and to date, no cure has been found for Lupus. In the meantime, The LupieGirl will continue to motivate, encourage and inspire Lupies to live their best lives, debunking the stigma of what "sick" looks like, as well as accomplishing their wishes and goals.

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  • Home
  • The LupieGirl, Inc.
    • The Journey
  • TLG Initiatives & Events
    • 2024 Lupus Awareness Month
    • 2024 Lupus Awareness Brunch
    • Lupie CareKit Drive >
      • Lupie CareKit Giveaway
  • The Survivor's Circle
  • 2024 Board of Directors Application
  • Volunteer Application
  • DONATE