Well hello YOU! This year has been crazy but thankfully many of us are still here and able to move about and live another day. Living through a global pandemic is one thing but living through a global pandemic with a chronic illness has been…one of a kind. On New Year’s Eve 2019 as the ball was dropping in Times Square and we all were celebrating the beginning of a new decade, I just knew that 2020 would be special. I knew I would eat right, lose weight, meet that amazing man, expand the LupieGirl, find a new job, and the list just keeps going and going. However, 2020 truly brought the unexpected, for real for real.
It's so much going on.
With me physically, mentally, and physically.
Ya'll. Here. I. am.
I don't even know where to start. We are literally in the middle of a health pandemic where thousands of people are dying everyday. The new norm has become masks, gloves and social distancing. Schools have been closed for the remainder of the year and it just feels like it is something off of a movie.
and guess where I am?
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.
Having a chronic illness is TOUGH! I am currently sitting in this hospital wide awake with a million and one things on my mind. Believe it or not, many things that I do think about are usually the same things that I think about every time I’m locked up in here. I wonder how long I’ll be locked in for, the things I could be doing instead of being stuck in this bed and I think about the food I could be eating; even though I have no appetite this time. Why am I here? To me, it’s too long to explain, so the shortened version is that I have no appetite, I can’t keep food food down, abdomen pain, major fatigue and drastic weight loss in a month. Now when I say “food food”, I’m talking about full blown meals; a meat, a starch, veggies, and desert.
Before I really stopped eating, I was eating like a 3 year old and then I started eating only bites of things which lead me to lose almost 50 pounds within a month! Now I know I’m looking all slim thick and what not BUT… I. AM. WORRIED. So after 2 previous ER pull-ups, I finally got admitted so that the “professionals” could take a thorough look at me because I just feel that something is wrong and I hate to feel sick—I know that I’m constantly sick but that’s just called lifetime sick. My bubbly isn’t as authentic as it should be when I feel sick. When I feel good, I’m bubbly, which brings joy to people all over. Sigh. But here I am.
The Lupus Awareness Brunch
And it HAPPENED! I DID IT! WE DID IT!
I am so happy! We turned Lupus into Lemonade!
It’s been THREE whole months since my last post and I will say that I’ve been BUSY BUSY!! Lets just say that I had a hot girl working summer break and now I’m BACK!! Heeey!!
So, on Sunday May 26, 2019, exactly THREE years since launching this site, The Journey of The LupieGirl, I hosted my first event, The Annual Lupus Awareness Brunch, Turning Lupus Into Lemonade and let me tell you... I was in Awe.
I will admit. I'm tired.
The month I've been waiting for is finally here and I've been busy. Really busy actually. I'm just so excited because it's LUPUS AWARENESS MONTH! I advocate so hard not only because I have Lupus but because it's a disease that has no cure and it is NOT TALKED ABOUT ENOUGH. PERIODT!
Shout OUT TO ALL THE LUPIES!!! I hope that during this month you are able to find some type of peace and comfort. I hope you were able to experience at least a day where you felt great! Happy Lupus Awareness Month to you! You are some of the strongest people that I know! Stay encouraged!
Even though medicines have advanced, do you know that there is one medicine (that I know of) used to really "treat" Lupus? Only one. Now there are other medicines I know like Prednisone and Cellcept that are used to help quiet Lupus down a bit but for the most part, THAT'S IT. Having Lupus is tough and frustrating. There are many people who are living with this illness, who, because of Lupus, have something else. For example, due to Lupus, I am on dialysis due to kidney disease…all Lupus fault.
Systemic Lupus is a beast. It can attack any organ at any time, sometimes, without a symptom. Many people with Lupus don't work, putting a strain on their living situation, their families, relationships and other things in their lives. This is why I want to create The LupieGirl, Inc.
I want for The LupieGirl, Inc. to provide mental, as well as financial support to those living with this illness. You all know I am a big education supporter so my organization could not be complete without providing something for education! I also plan to provide scholarships for qualified Lupus Warriors.
Something needs to be created to provide opportunity and hope to Lupies because this journey is very tough. I'll never forget going to vocation rehab (or whatever it's called) *eye roll* and hearing that lady tell me that I couldn't be nurse. I will never forget her telling me to be realistic with my life goals. I will never forget people telling me to stop going to school. All because of Lupus. All of those things really hurt me mentally. However, it has really pushed me to want to be something greater than I ever imagined! Now, I decided to not pursue nursing because I knew the stress but saying I couldn't do isn't true. I want a support group that has both bright and dark times. A moment where we can complain but uplift, encourage and motivate as well.
Even though my family and friends are so supportive sometimes I still feel alone. Even though my loved ones were there during my hardest times, I experienced everything and they watched. There is definitely a difference. When my family left at the end of the night, that’s when my real strength had to kick in. Many people just look at the physical devastation that Lupus causes but never think about the mental. Mental Health is sooooo important. I do suffer from depression. I am working more to control my emotions which one day may be up or down. I am learning to admit when I am not okay because it is okay to not be okay.
Now how am I going to do this? I have NO I D E A—But, I'm excited LOL.
The Lupus Awareness Brunch!
I'm so excited, nervous, anxious, and happy about this event. It's literally about 5 days away! People are buying tickets and it gives me this adrenaline rush! During this process, I've learned so much and I love and hate it! Oh by the way, did you buy your ticket yet?! I would love to see you there!
People always have said, if you want to see change, many times you have to make that first step. So, here I am , making that step on faith. I'm so excited for where the LupieGirl is going and all this love and support feels so...damn...GOOD!
I truly thank all of you for being on this journey with me!
Happy Lupus Awareness Month!!💜
So much has happened since February and at one time felt like a never ending end. One thing I can say is that it has for sure been one heck of a journey that I can add to the books. Since October, my medical condition has had its highs and lows but I am very happy to say that I am happy, I feel good and excited—for all the things that are happening around me.
Now as a Lupie, I always talk about how I received my M.D. Degree from the University of Experiences with a specialization in pharmaceuticals (don't judge me). So with pain medications, I am all too familiar. I have been on all types of pain medications from Dilaudid or Fentanyl, to Morphine or Percocet, just to name a few. However, I do believe that it is crucially important to understand that yes, pain medications are for pain, but they, like all other medications, have side effects too—which is something even I, sometimes, just don't think about.
I will say it now and I will continue to say it--YOU are your best doctor!
So, as you know (Hair flip), I've been listed! Again!
Ya'll!! Hey! I just got out the hospital last week but I feel so motivated and encouraged! I look and feel like PEPPA PIG! I'm feeling a lot better and things are starting to look up on the bright side. I'm taking antibiotics and the pain medicine has really helped. I told the world that a couple of weeks ago that I've been placed back on the Kidney transplant list and it's great! However, my feelings are actually mixed this time. Once I received that call, I did shed a tear but there are pros and cons to being listed and getting a kidney transplant.
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.