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My Evaluation...

7/29/2016

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Well, I must say, it has in fact been about a week or two since I made a blog entry and please forgive me. Between birthdays, reunions, my health and just trying to tackle life as a whole, my life has been busy as H. E. double hockey sticks. Yes, I am saying I've been busy and overwhelmed as hell. Lupus has actually been very quiet (HALLE) and I am more than grateful for that. Well, I have a kidney evaluation on Monday (8/1/2016) at THEE Cleveland Clinic (THE BESTEST HOSPITAL IN THE LAND OF HOSPITALS!). I know “Bestest” is NOT a word, so don’t critique too much! (LOL) However, my feelings are mixed about this upcoming experience. I am excited because I have lost about 15 pounds since I was denied from Tampa General Hospital and I feel that I just have a greater chance at getting onto CC’s donor list. I am upset that it is a little far for me--about an hour drive there—to  have to drive there 4 times within this upcoming month and they aren’t fronting any gas money.  But (a big but), due to the lowering gas prices, I GUESS I am cool with it. I am excited that God has allowed for me to even make it THIS far to be able to lose the weight. I am thankful that He kept my mind sane and gave me the ability to drive down there for this evaluation. But—there is always a but—I have just been EXTREMELY nervous about the whole ordeal.  I am always nervous when it comes to my health, even when nothing is wrong so I know I might boo-hoo cry in the car on my way down there—like a little punk. Don’t get me wrong, I am confident and excited about the evaluation but I don’t like when hospitals deny people and don’t try and help. When I got denied from TGH, they explained to me, in a letter, that in order for me to even have a chance of getting on their list, I had to lose about 30 pounds. Now this is a hospital that was willing to take my insurance to cover medical expenses so why not take my insurance and provide me with health options and encouragement to lose the weight to get on their list? I am TWENTY-FOUR years old! I have my entire life ahead of me. So why not try and help instead of deny everything that is not considered healthy according to their standards. In their letter, they didn’t provide a list of things that I could do or programs I could look into to try and get my weight on track.  I have ALWAYS been a juicy butterball (my grannycakes would say) and it has been a tough journey to get this weight off of me. Yep, I am so salty. LOL. But it’s ok. I have been walking with a great pace at the park, drinking lots of water (even though I shouldn’t because of my intake restrictions) and just eating better, a lot better.  I have gotten a little discouraged but who doesn’t? 
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Last Sunday...

7/12/2016

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So, it's been a little while since I made a post (feel like) but here I am! Lupus is the same annoyance she was yesterday and when she first came into my life. Dialysis, I can say that it has actually been pretty good because of the fact that I only do it once a day, AT NIGHT TIME, while I'm catching Z's. Cleveland Clinic called and I'm getting ready for that evaluation but the lady over the phone advised me to lose about 15 more pounds. At first, I said to my self "BIH, NO!" but then I had to be my grown up self and really reevaluate what I was eating because I had been slacking a little. I eat like a mouse now but I still needed to be eating right. So I do my little 2 miles a day (not everyday really, I be lazy sometimes honestly) and I do eat a lot better. However, that is not what this post was about. 

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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