How I’m Dealing with My Yo-yo Disease Called Lupus

How I’m Dealing with My Yo-yo Disease Called Lupus

Before I had lupus, anxiety and panic attacks were foreign to me. Since then I have learned to deal with these episodes by controlling my breathing and telling myself that the feeling is temporary.

Most people have no idea how much your life changes when you get a diagnosis like lupus. I have moments during my day when I realize my pain level and brain fog are minimal, and I want to laugh, sing, and dance. Then an hour later, I think about the things I still can’t do and what I’ve had to give up to get to this point … then I want to sit and cry for hours. I have always had a lot going on in my head and my life. I have often joked that my mind is a dangerous neighborhood and that even I am afraid to wander in there.

Having my entire life uprooted has been a huge challenge. My primary focus since I hung up the phone after hearing the words “you have lupus” has been on how to find relief from this disease. I have times when some of my old normalcy returns. Then, I receive unfavorable test results and have to endure hospital stays, setting me back further than I can run ahead. Now, I am cautious. I hate that.

Before I received my diagnosis, I believed that whatever I battled would kill me that year, so I went to the beach and reconciled my life. I asked myself whether those close to me knew that I love them. I have been told by loved ones that they know where they stand with me, so the answer is “yes.” I thought about whether there were any places I still wanted to visit? Nope. Whether I have regrets for the things I’ve done or if I have anything for which I should apologize? Not at all. Now, I have a list that is getting longer and included on that list are some of my fears.

While I am not fearless, I tend to do what I want to. I address my fears, and then I go for it. I often say that I don’t have a bucket list; I have a “screw-it list” because my attitude has always been “screw it, it will all work out, so let’s see what happens.” Now, before I attempt to do something, I consider whether the activity could land me in the hospital. And how much of my income I would have to spend on the stay? So I am always counting money and worrying about overdoing it. I don’t like it, but I am doing my best to find new things that bring me joy.

I recently moved to Mexico, and since my arrival, I’ve kept to myself. So, in an effort to be more social, I’ve decided to take two classes: in Spanish and sewing. I’m excited about learning Spanish. My interest comes from before my diagnosis: In 2014 I traveled to Chile to immerse myself in the language. Sewing is new to me but as a former fashion blogger I’m hoping to discover a new love, creating my own clothes instead of writing about others’ designs. Lupus is like a yo-yo: I have a lot of extremes with this crazy diagnosis, but I hope that you and I spend more time on the highs than on the lows.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

2 comments

  1. TC says:

    This is lovely and immensely admirable ❤️

    I’m still learning to see lupus as a condition in life and not a phase that one gets through like puberty.

    Trying to craft a life that fits it has been hard… but who says life is ever easy? Lupies might just need different resources for theirs. (Easy to say when today is relatively pain-free LOL)

    • Kellie McRae says:

      Hi TC, I am happy that it was a relatively low pain day, that’s always something to celebrate. I agree with you that trying to craft a life that fits is tough. We’ve been crafting a life since day one and then when we get it down, lupus came and handed us new clay lol Its tough some days and other days, we are just grateful that pain or fatigue may be at a low. I like how you phrased the puberty thing, I agree. I have in my mind that if I go into full remission that I will be “back to me” but I am thinking, that’s not the way it will be but I am still optimistic that things are at least getting better.

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