IgA Nephropathy

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IgA Nephropathy
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    Community Voices
    Jesse Morales

    Lessons You Learn in the New Year After Living With Illness

    As the 2010s end and the 2020s begin, I wanted to share 10 things I’ve learned this decade of feeling IgA nephropathy symptoms (I was diagnosed seven years and have other chronic conditions). Treating ourselves, especially our vulnerable bodies, with compassion is essential. Chronic illness presents so many physical, social and psychological challenges that grace, kindness, and compassion with ourselves are some of the best resources we can draw on to help us get by. Let other people in, even when we don’t look, feel or function very well. Not everyone will go through this illness journey with us, but that’s OK. Let in the trustworthy ones who can empathize, as it’s human kindness that sustains in the toughest moments. It’s OK to feel anger, sadness, loss, confusion, fear, grief, rage, flippancy, inertia, or misunderstood. Chronic illness is not easy. We can be kind enough to ourselves to sit with how we feel, express it when we’re ready, and let go when ready. We may be sick, but we are not victims. Advocating for ourselves is vital to securing the best medical treatment for ourselves and our community. Our bodies are wise, so listen up! Rest, hydration, nutrition, balance and moderation go a long way. So does keeping track of symptoms and finding ways to manage them while maintaining as much quality of life as possible. We don’t need to allow this disease to limit our dreams, goals and ideas. Personally, I may be immunosuppressed and frequently tired, nauseous, and susceptible to infections, and that might limit, say, tropical travel, but there is a lot I can do, and so can you. Let’s focus on what we can do. (Also: I’ve found a lot of happiness also in giving myself permission to do and produce absolutely nothing when needed. Rest is a worthwhile value too.) Positivity just isn’t possible all the time, and pain sometimes doesn’t have any other characteristics or redeeming values than just being painful. This is where self-soothing, self-compassion, and good relationships with family, friends and medical teams are essential. And yet, pain is just pure pain, loss can be radical loss, and we don’t have to sugarcoat it for others’ comfort. We are each on our own time frame in life and with our disease progression. There isn’t a one-size-fits-all way to move forward with this illness. Do what works for you, period. Don’t let anyone make you feel small or late or broken or less than, because we are strong for surviving each moment with a chronic illness. Finding a safe space can be extremely helpful when our bodies are sick and unreliable. Whether that’s in therapy, with a loved one, in your own living room, in your place of worship, even in your doctor’s office or treatment clinic. I cannot overstate the importance of feeling safe somewhere. It’s not over until it’s over. Chronic illness is a long series of re-tooling treatments, adjusting and re-adjusting lifestyles, and slogging through feeling plain terrible on lots of days. As long as we keep going, keep working on being kind to ourselves and our bodies, keep looking outside ourselves for ways to make the world better (when we have the energy), and keep hoping, we are making it. There’s always another day until there isn’t.  What we have to do is decide how we will use the time we have. Happy New Year, and may my next decade be lived with courage, resiliency and love — and potentially many scientific advances for our respective chronic illnesses. We can always hope.

    Community Voices

    What should I do next?

    I am 26 years old and I have had chronic pain all of my life. They said it was carpal tunnel and tendonitis when I was in middle school. I have also had issues with migraines, diagnosed celiac, and IGA nephropathy. Recently my joint pains have been affecting my mobility. I had some positive test results for ana and inflammation in April. I recently went to MUSC and they said my recent set of blood work is completely normal other than ana of 1:80. What do I do with normal blood work but constant pain?

    Community Voices

    The good thing that is happening.

    Several weeks ago, I started a free trial of the NOOM app. Like a lot of people with fibromyalgia and autoimmune diseases, I have gained over 100 pounds over the last 20 years. This past year, I gained almost 40 pounds while on massive steroid treatments for my IgA Nephropathy. I have been struggling to breathe and even had to go on oxygen. I lost 20 pounds on my own, then lost another 5 with help from the app. The weight loss is very slow, but it is staying off. I feel a lot better. Because of that, I am motivated to keep going. It is very hard, but feeling better makes all of the difference in the world. So, that is my good thing!

    Community Voices
    Community Voices