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.
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.”
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.
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