Remembering the Time I Thought I Could Find Some Normalcy

Remembering the Time I Thought I Could Find Some Normalcy
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I was awake for half the night. This is not unusual, but often I am coming up with topics to write about in this column or speak about on my YouTube channel. Instead, I was traveling down memory lane to things I have tried to avoid and misconceptions I had about what lupus would mean for my life.

When the doctor phoned me to deliver my diagnosis, he wanted to overnight three different medications, one of which was steroids. This is not an uncommon prescription for those of us battling lupus, but coming from a fitness background, I asked if I could do without them. Nope. Since then, I have been given steroids consistently over the years to help get flares under control. As much as I wanted to avoid them, they were an inevitable part of my treatment. They have been issued both in pill form and intravenously.

My body is quite sensitive to a lot; for example, when I am put out using anesthesia, I stay out longer than most. I am also the first one to suffer a side effect of a medication that the doctors haven’t seen yet. Lupus has not been the exception for me but the rule.

I was lying awake worrying for two reasons. First, my bone density is decreasing and this is already showing in my teeth. If you’ve ever seen me, you know I’m basically all teeth. I love to smile and it’s as big as my head. Seeing discoloration start to show up on my smile and knowing it’s only just beginning is breaking my heart.

Kellie McRae & her giant smile
Kellie with her toothy smile. (Photo by Kellie McRae)

Additionally, I was diagnosed with interstitial lung disease a few years ago. Of course, lupus again has to be an overachiever. For the better part of 2019, I would cough and expel my food. It became so bad that at the beginning of 2020, I was hospitalized for being “severely malnourished.” I was down to 99 lbs. A few weeks ago, I was happy to share all over social media that I was up to 116 lbs.

The coughing began again, but this time, my records showed something “rare” and were sent off to a renowned pulmonary doctor in Mexico City. It turns out that I will be on an inhaler for the rest of my life because of the way little holes have established themselves in my lungs. I will have a constant build-up of mucus that will breed bacteria and cause frequent infections, so I must do cough-inducing exercises and try to clear my lungs daily.

I remember a time when I thought I would be able to figure it all out — when I thought I could pick up some semblance of normalcy along the way. I laugh now because I would often tell people that the only constant thing is change. I am fully embracing this in ways I never thought I would have to. I am constantly trying to adapt to my new life and it is renewed frequently.

I am saddened by the idea that I may lose my smile. I lie awake wondering how long it will be before it’s a space in my head that I cover in shame when something makes me smile big. I am speaking with my healthcare team to try to figure out how to preserve not just my teeth but some of my bone density throughout my body as well. As much as the thought of an inhaler hurts my heart and coughing jars my body, I am ready to accept that this is something else I will eventually look back at and say, “OK, I managed to get through that. I can get through the next phase as well.”

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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.

Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.
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Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.

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8 comments

    • Kellie McRae says:

      Hi Barbara, thank you for the work you are doing, it is appreciated. I cannot answer the question you posed. Perhaps you can speak with one of the doctors you work with. I hope you are doing as well as can be under the circumstances.

  1. Anne-Mary J. says:

    Kellie, I’m so sorry that your lupus is so bad. That must be so difficult to deal with. I’m in an early stage and it’s not that terrible at the moment. Thank you for writing about your experiences. It can’t be easy to share some of the things you go through.

    • Kellie McRae says:

      Hi Anne-Mary, Thank you for your kind words. I am usually in good spirits no matter what. There are some pretty tough days but I do my best to get through them. Lupus affects us all in different ways so I am glad that you are not dealing with what I deal with and I hope it doesn’t get to the point where you experience the nonsense I have dealt with. Thank you for commenting.

  2. Regina Zielinski says:

    Hi Kellie,
    I’m am sorry your Lupus struggle has been so fierce and that you are willing to share your experiences. I also have Lupus and many other AI conditions that have contributed to my bone loss issues. Please consider posting more about your bone health journey.

    • Kellie McRae says:

      Hi Angela, I am sorry that you too are losing bone density. So worrisome and it is one of the few areas where I truly feel a bit helpless but I will do my best to stay in good spirits as usual. I will share things as they happen but I hope that someway, some how I am able to slow the process. Wishing you the best on your journey! Thanks for commenting.

  3. Brenda says:

    I hope the doctors and the dentist can help you keep your pretty smile. Seems like we get over one thing and another pops up. I was on Hydroxychloriquine for a little over a year, had a reaction, and the Rhumatoligist took me off it! My anxiety has been an issue with the covid-19 pandemic. I know what you mean by the steroids. I’ve had to use Prednisone 3 times already this year. I don’t like them either. I’m concerned about what he might put me on when I see him in the fall. You take care, and hope you’ll get things taken care of. Hang in there.

    • Kellie McRae says:

      Hi Brenda, I hope that your doctors can find something that helps more than it hurts. We always seem to be weighing risks versus benefits as well as coping with the transformations that lupus seems to bring. I think the pandemic has caused a range of emotions in so many, please do what you can to take some time to step away from the news and make sure to take the safety measures to heart. I know that doesn’t assuage the anxiety you may feel but getting a break from the idea of it can be helpful. Sending you comforting vibes.

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