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.
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Roberta Garcia Kracht
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
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!
allison kirkland
Kellie, a vegan diet shouldn't be tasteless and leave you feeling deprived. I've had SLE for 40+ years and have been vegan for 17 of them. (Which has done more to manage symptoms than most meds.) A healthy vegan diet does require more work and conscientiousness than a standard diet, but it can be delicious and varied. Due to the increasing numbers of vegetarians and vegans, it's also getting easier every day to find options in both grocery stores and restaurants. There's also no shortage of cookbooks and blogs with plenty of good recipes.
Like everything that comes with having lupus, it's all in how you approach it. Best of luck in your journey to remission. :-)
Kellie McRae
Hi Allison, you are right, I have followed a lot of various recipe's and have found some foods are quite flavorful but they are just not what I want. The things I most enjoy cause me indigestion or terrible heartburn and are not recommended because they are nightshades. I will say that I am thankful that there are a lot of options that are available in the form of cookbooks and such. I'm kind of weird with some of the things that I still feel are quite processed so that's made it harder for me. Also, seems soy is quite prevalent and I am also trying to avoid that. Perhaps the bigger issue for me is that I have really limited myself to nothing but the fruits and veggies. Here in the area of Mexico where I live, I have been able to find some vegan things in a few of the markets so when I have run out of energy for cooking everything from scratch, there are indeed options. I will agree with you on feeling much better since transitioning to this way of life but truth be told, I really would just love a giant chunk of cheese with a ton of tomatoes and bell peppers lol Just me having a veggie pity party :-)
Trudy
Hi Allison, I myself have had good numbers for almost a year...still having isolated inflammation...many other things. What I have found while going through this...only the strictest diet helps me...No GLUTEN...NO DIARY...NO NIGHTSHADE VEGTABLES...NO RED MEAT...NO PROCESSED FOOD..NO GRAINS. So one would ask well what's left to eat....FOODS THAT DETHATCH THE TRASH IN OUR BODIES. I eat turkey every day usually...lots of broccoli...spinach...carrots...sweet potato for a starch and fruit on the side. Which is very hard to do...I admit...but all the throbbing pain etc. is not the option wanted right. I breathe good...vison clearer...swelling down...hair soft as silk (healthy)...so many things it would seem unbelievable to most.
Sincerely,
Trudy.