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It Aint What it Looks Like

3/12/2018

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Since I was told that I needed a kidney transplant, I thought about all of the freedom from hospitals and "bondage" along with having children and so forth. Boy oh Boy, I guess now, I'm facing the true reality. Since the beginning of the new year, I've been hospitalized twice, both about 4-5 days at a time. That's about 10 days that I've been locked up and it's only the beginning of March. Am I mad about it all? Nah. I just want to be "normal". 
This transplant gave me life and I am so so so thankful for Bobby (my kidney) and I never want to seem ungrateful for that. However, this fight has been truly tough. Before my transplant when I was on dialysis, I was was about 50 pounds smaller, I took about 2 or 3 medications for Lupus, no high blood pressure issues, no nothing. But I was full of dread when I had to take my machine eevv-eerrr-yywhere that I slept. I dread the weekly and then monthly needle sticks as well as being monitored constantly. 

Since Bobby and I got together, at first things were perfect. However, I found out very quickly that NOTHING in life is perfect. My appetite is ridiculous, I'm now at a high risk for diabetes and skin cancer. By the time I'm probably in my 50s or 60s, I may be at a higher risk for a hip replacement and due to a medication that I am taking, my bones too are at risk. Last week my feet were swollen like over-sized ham hocks and a light butterfly/malar rash lightly graced a side of my face. However, I couldn't trade it for anything.

Lupus has been in my life since the week before my 19th birthday. With every decision that I have made in my adult life, Lupus has played a major role. I remember my life before Lupus but I feel like the time right now is what truly counts. I constantly pray for my health and others with chronic illnesses all the time. I constantly get emotional and depressed about it but YOU will never know because I constantly grace your presence with a smile and a bubbly laughter. Lupus has taught me to be strong despite my circumstances and God is who brought me to it and through it. With each battle that I face, I know that I will make it, even when my body says otherwise. 

Ha. I haven't been dedicated to the LupieGirl as I should, especially due to changes that are occurring in my life. I've been offered a new position, one that is in sync with this masters I'm about to catch, I'm clearing debt, Some guy has been catching my attention(don't ask!), I've been doing me and YA GIRL IS GRADUATING WITH THAT MASTERS DEGREE IN MAY!! BABY BAAAAABBYY!!!

So, through it all. Even through the trials, blessings are still gracing my life. I am so happy with life and I couldn't have it any other way. This is my life, My story and it is all happening for a reason. God is still making a way out of no way because my faith has not and WILL NOT weary. I am determined to finish this battle and for those who have rode with me, I thanks ya. 

I have a saying on my bedroom wall and it says this:
"Eventually all the pieces will fall into place. Until then, laugh at the confusion. Live for the moment, and know that everything happens for a reason".

​Now, it's time to focus back on the LupieGirl. 
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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
    • Lupus Awareness Month
    • Lupie CareKit Drive >
      • Lupie CareKit Giveaway
    • The 2024 Luxe Derby Event
  • The Survivor's Circle
  • DONATE
    • Volunteer Application