I’m in Lupus Remission but I Feel Incomplete

I’m in Lupus Remission but I Feel Incomplete

The past few months have been a disaster. Despite being a bona fide joy junkie, I’ve experienced new physical symptoms that have drained me mentally, physically, and emotionally. I rarely feel very low for a long period, but recently I was having such a difficult time that my children took notice. I spoke with my daughter on a Wednesday, and she was at my door the following day. And my son looked at expediting his passport application.

I’m sure you’re familiar with the saying, “God does not give us more than we can handle.” I disagree with this sentiment. People take their own lives because they have passed the brink of what they can handle. While I was not considering suicide, something I said to my children put them on high alert. The day after my daughter arrived in December, I had a doctor’s appointment. This was a follow-up to my hospitalization in October: five days of poking, prodding, and working to get my blood count up, and my enzyme levels down.

When I arrived back in Mexico after my hospital stay, I decided to transition from being a vegetarian to following a fully plant-based lifestyle. I had become a half-hearted vegan months before, but upon my return I went all in. As I made this change, part of me was happy, while another part felt that lupus had robbed me of yet another source of pleasure in my life: eating flavorful foods.

However, last month after my daughter had arrived, we received some shocking yet welcome news at the doctor’s office. After examining my blood tests results, my doctor said, “Your antinuclear antibodies are high; you are anemic, but not because of low iron; and all of your other numbers are normal.” My daughter and I both heard the last part at the same time. We looked at one another, and I asked, “Normal, as in ‘remission normal’?” With a big smile, she answered, “Yes, remission numbers.”

While I am happy about the numbers, I don’t feel happy. I know that sounds weird. My body still has pain, though not as much as I’ve had in the past, and I’m having unusual symptoms. The doctor hopes these are side effects of the medications I was prescribed at the hospital, so we are tweaking them. I feel ungrateful because while I have more energy and even my breathing has improved, I still feel housebound because some issues have not resolved.

I’ve been chasing remission since my diagnosis, but now that I have achieved the numbers, I’m still at a loss. I have been seeking joy in new places and remembering that many others are chasing those “normal” numbers. Perhaps I will reconsider my opinion on that adage I mentioned earlier: that we’re not given more than we can handle. I had felt like giving up for the first time since my diagnosis but then I got that good news. If you are battling, I hope remission happens for you, and I hope you dance. I think that’s what I’ll do next.

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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. Roberta Garcia Kracht says:

    Great article by Kellie McRae. I have had normal numbers for ANA from the beginning of my diagnosis, not, however, normal Titer numbers. I think that we are what we eat and that Kellie’s diet made a big impact. I would love my breathing problems to go away. I have a hard time staying pure with my diet but I will continue to work at it. Kellie is inspiring.

    • Kellie McRae says:

      Awww Roberta, thank you so much. I want you to know that I have had cheese, tomatoes and quite a few food tantrums along the way. Please be kind to yourself, no one is perfect. All we can do is our best. I do admit that I think a huge factor in things turning for my numbers is what I put in my face but its not always easy (nor tasty) there have been some trash can meals and a tantrum to follow. Thank you for your kind words, you can do it, just remember even baby steps are steps that will help you get to the destination. Gentle hugs!

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