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How will you define your life?

2/1/2020

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I was asked to be a guest blogger for Living52. I was very honored to be given this privilege. They asked me to share my thoughts about what it means to be resilient. I wan't to share the post here too. Please checkout their website and like their FaceBook Page. Their initiative is impactful and moving.  

I was 24. I was sitting in a doctor’s office. And I was desperately hoping that this doctor would be different. I was hoping he would finally have the answers I was seeking. You see, for the previous six months, I had been a spectator as my body carried out a mutinous attack against me. I had been to more specialist than I realized existed. I was searching for answers. I was watching before my very eyes, as my body deteriorated and betrayed me. The majority of these brilliant minds agreed that something was seriously wrong as they assessed my symptoms. But no one could put a name to the debilitating pain and fatigue I was experiencing. In late December of 1999 I found myself alone sitting in this doctor’s office hoping against hope that this doctor could finally put all the pieces together and explain why the body of a relatively healthy young woman was imploding.

All these years later, I still remember the doctor walking in and gently shaking my hand. He visited with me for about five minutes, asked me a few questions, and then he said, “You know you have Lupus, right?” As those six words washed over me, I quietly responded, “I know...I just needed a doctor to confirm it.” You see in that moment, I wasn’t upset or angry (that would come later), I was relieved. I was relieved to finally have an answer, a name. I was very much relieved to know I wasn’t crazy or losing my mind.
With those six words, my life drastically changed forever.
With those six words, my life drastically changed forever. I wasn’t dying, but also, life would never be the same again. And I had a decision to make. Was I going to let this word--Lupus-- destroy my life, or would I choose to live my life to the very fullest despite this new word that had entered my vocabulary.

Most of us have dreams and visions of how we hope life will turn out. Can I tell you, as a young woman dreaming of the future, Lupus never entered the equation. Writing this 20 years later, I can tell you that most of my dreams from young adulthood never came to be. I can also tell you that getting diagnosed with Lupus wasn’t the first difficulty I encountered in my life, and it definitely wasn’t the last one.
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I won’t hesitate to tell you that my life has been hard, but I want you to hear this next thing very clearly--that doesn’t mean my life has been bad. As I thought about what I wanted to share in this post about resilience, I actually sat down and wrote out a list of all the notable traumas, difficulties, and disappointments I’ve faced in my life. The list was long. I won’t share them all--some are quite personal. However, they include major surgeries, multiple chronic illnesses, death, loss, and heartbreak. These things, these heart events, have shaped me into the person I am today. Because of them I am stronger, bolder, more tenacious. I love deeper, laugh harder, and fight more ferociously than I ever thought possible for the things I believe in. I am a survivor. I am a warrior.
I am a survivor. I am a warrior.
You can’t hide from the hard things in life. They have an innate ability to find us. But we have a choice in how we choose to handle those hard things. I absolutely refuse to let the difficulties of life overwhelm me. Trauma may shape who I am, but it does not have to define me.
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don't give up my dear friend

1/17/2020

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Pain really and truly sucks. ​
If that offends you or makes you feel uncomfortable I’m sorry. It doesn’t matter whether it’s physical pain or emotional pain. Either one can become overwhelming and drown out everything else around you. I know because I’ve had way too much of both in my life.
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Some days I just want to sit down and cry—it can be so exhausting. Just the normal everyday stresses of life can be, at times, overwhelming.  And then, you add in unpredictable physical pain that can bombard you without warning and without mercy. Well, when that happens… What I really want to do...  If I answered honestly... I want to crawl under my desk, wrap up in a big comfy blanket, and have my husband gently hold me until I fall asleep. Sleeping is always the ultimate goal because it’s the one place in which I can find a respite from the pain—only very rarely can pain follow me into my dreams. 
However, in life, we seldom get to do what we really want, and unfortunately, you don’t get a day off from Lupus. So, when faced with the potential of debilitating pain—pain that would consume me if I let it. In those moments, what I actually do is bare down, grit my teeth, and become a first class actress who is an expert at manipulating her audience into seeing only what she wants them to see. 

You may not realize this unless you’ve lived with chronic pain, but pain, all to often, makes other people uncomfortable. So, I have learned that the way to handle it is to put on a plastic smile and just endure. My closest friends can usually see through my facade, but I’m pretty good at fooling the rest of the world.
I spoke last week about Living52. This week’s word for Living52 is courage. I don’t often think about the word courage, but this week as I looked at the definition I realized that it is a word that really does apply. One definition of courage is strength in the face of pain. I was diagnosed with Lupus when I was 24 years old. In the last 20 years pain has become such an everyday part of my life. So much so that I often don’t even think about it. I definitely don’t think about being courageous. Mostly, as stated above, my primary goal is to endure. Because Lupus or not, I still have to work, I still have to pay the bills, I still have to take care of the everyday minutiae of life. ​ 
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I made the decision years ago I wasn’t going to let Lupus stop me from living my life. Sometimes I pay for that decision when it causes my lupus to flare, but I don’t regret the decision. ​​

I don’t know what it is you may be facing today. Maybe it's chronic pain like me, or maybe it’s emotional pain from personal tragedy or trauma, or maybe it’s something else. I want to encourage you to keep going, keep holding on, keep taking the next step. I don’t type those words lightly. I know from personal experience, that sometimes, it might seem easier to surrender—to give in. But on my most difficult days I’ve had two things that have given me strength: the love of family and friends and the hope of a great God. ​
In Joshua 1:9 it says, “Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the LORD your God is with you wherever you go.” ‭NASB‬‬
With love, strength, and God given courage, you and I can continue to embrace life even on the really hard days. Don’t give up my dear friend.
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Lupus Malar Rash

2/17/2019

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 From a FaceBook post dated February 7, 2019

One of the tell tale signs/symptoms of lupus is a facial rash. Many refer to it as a butterfly 🦋 rash because it fans out and over both cheeks, bridging the nose (the medical name for it is a malar rash). Interesting Fact: this is why the butterfly is used to represent lupus.
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When I first began having symptoms, prior to diagnosis, it was one of the first things my mom noticed. The rash comes and goes. However, its appearance has always been a signal for me that my lupus was/is in an active stage. To most, when I’m sporting the rash, my cheeks just look extra rosy. Some think I’m just becoming flush from over exerting myself. When the rash is at its worse, not only are my cheeks extremely flush, but they also get super hot—sometimes causing me to break out in a sweat. Although uncomfortable, these extreme instances of my rash usually only last a couple of hours at most.

If you read my post last week about my doctor’s appointment, I mentioned one of the first indicators that this most recent flare was coming on was that my cheeks got extremely hot. I’ve been surprised as I walk through this current flare because my butterfly rash hasn’t abated like I’m used to it doing. Even as I write this (a week into this most recent flare) my cheeks are burning up. They have felt this way so long that my skin has started to sting (almost like a sunburn). It’s definitely not the worst thing I could be dealing with, but it most assuredly gets old.

​So you might be wondering why I took all the time to explain this. I’ve come to realize that many people don’t know a lot about lupus, other than it’s name and that people with the disease generally don’t feel well. I’ve also come to realize the only way to help people learn about this disease is that those of us who live with it every day have to be willing and vulnerable enough to share glimpses of our stories—snippets of what our lives are like living with this day in and day out.


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Living with Lupus

2/17/2019

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From a FaceBook post dated February 2, 2019

Living with Lupus is not my most favorite thing in the world. It’s exhausting, it’s unpredictable, and, oh yeah, it’s painful. But I’m not unique. Many people deal with chronic conditions day in and day out. How can you help me or another friend with a chronic illness? Here’s five thoughts.

  • Keep giving me hugs and pats on the back (gentle ones). They may hurt me, but I truly believe human touch is healing.

  •  Ask me how I am, but just know I may say “fine” when I’m really not. Many people with chronic conditions are afraid their friends will see them as complainers and whiners
Don't make assumptions...
  • If you’re curious about something, ask? I’m not afraid of questions. I’ve lived with this condition a long time. Unfortunately I know a lot about it. Sometimes people just make assumptions about me instead of asking and that hurts. For instance, I use a wheelchair at school. Many people don’t know why I have it when they also see me walking around most days. Well the answer is, most days I am okay, but I never know when my lupus will strike as evidenced by this week’s flare. When that happens, I can go from a girl full of energy to one that can hardly stand in less than 24 hours. Just because I feel bad, doesn’t mean I can stop working, and on those bad days, that wheelchair is a life saver.

  • If you know I’m having a bad day (or days) don’t be afraid to just jump in and help. Most people with chronic issues hate asking for help even when we need it because again we don’t want our friends to think we’re whiny helpless people. My friends at work are amazing at this. When I’m having a bad day and they know it, they do things like showing up at my duty. They say, “I’ve got this covered, go rest for a few minutes.” You have no idea how that kind of love in action speaks to my heart.
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  • Finally, please pray for me. There is no way I could battle this disease day in and day out without God standing beside me and sustaining me. My reliance on God gives me the strength and courage I need to keeping fighting each day. When you’re battling a disease that will never go away, will never be cured it’s easy to become lost in despair. But I know my hope and strength are found in the Lord. Psalms 30:5 promises me that “....Joy comes in the morning.”

I know there are other things that could be added to the list. But these were just some quick thoughts I had this morning while I’m laying in bed battling with my Lupus. Btw, it’s a battle I’m determined to win.
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