Undifferentiated Connective Tissue Disease

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Undifferentiated Connective Tissue Disease
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    Community Voices

    I'm new here!

    Hi, my name is universe_song. I'm here because I have just been diagnosed with UCTD, among other things. I am learning to let go of my previous life and live this new one, with all that comes with it.

    #MightyTogether #PTSD #Fibromyalgia #Migraine #Asthma #Dysphagia

    1 person is talking about this
    Community Voices

    Surgery 5-12-22.

    I just wanted to let my leaders to know that I am having a total right knee done this afternoon and that I won't be in the Mighty today unless it is to wake up overnight to read the posts. I do more reading than posting because as soon as I think of what I want to say, I fall asleep. But do know that I get more out of reading than trying to find a counselor that doesn't understand our #chronic pain, #chronic illnesses, #UCTD , #Fibromyalgia , and my list of #mental health problems, plus about #10 more problems that I have. Thank you all for being here.😉 And I will talk to you soon.🤗!

    4 people are talking about this
    Community Voices

    Morning Mighties!

    Has anybody on here, who Is pretty much housebound, and seething with boredom! tried learning a new instrument with a visiting tutor before?

    I would definitely need physical guidance as my co-ordination /fine motor skills can be tricky.

    I learnt piano as a teenager and regret not seeing it through, as I found two hands tricky and being a typical adolescent 'boring" 🤣🤦‍♀️. But now I see it as a challenge?
    Would love something to do which would also be an achievement for me.

    I'm a creative so and so and have tried a few crafts but they were not for Me and everytime I hear a piano being beautifully played i can't help but feel jealous

    I have chronic fatigue as part of my undifferentiated connective tissue disease and not sure if it would get in the way? I'm also very shy (autistic) so the initial meeting with a tutor may be kinda overwhelming but this is minor really

    Thoughts? Kind Regards
    Grace

    3 people are talking about this
    Community Voices

    Hello! New here. I'm 28 with recently diagnosed UCTD and inflammatory polyarthritis. I had positive antibodies to scleroderma as well but not enough clinical symptoms to be diagnosed with that for now. I was just started on Prednisone and Plaquenil. I was told about the risks to vision and potential GI upset. How long does it usually take to tell a difference with Plaquenil, and do the side effects lessen as you adjust to being on it? Does anyone here have tips for handling this condition or experience with it transitioning to a more defined CTD? #UndifferentiatedConnectiveTissueDisease #Plaquenil #Gatheringknowledge

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    Community Voices
    Community Voices
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    Emily Sunez
    Emily Sunez @esunez
    contributor

    Journaling and Creativity Can Help Us Live Well With Chronic Illness

    Chronic illness turned my whole world upside down. A decade ago, I became ill with multiple chronic conditions, including POTS, CRPS, Ehlers-Danlos syndrome, and lupus/UCTD. For several years, my symptoms were completely debilitating and made it difficult for me to function and complete basic everyday tasks. As such, I began focusing all my attention on finding ways to cope and manage my illness. Though I was taking my medications and supplements, exercising as much as I could tolerate, and eating well, I was frustrated by the fact that my symptoms weren’t improving much. So I turned to alternative ways to cope and searched for a distraction from the crushing fatigue, vertigo, and widespread pain I was experiencing. I made the decision to sign up for a painting class in 2015 and instantly fell in love with the way painting made me feel. Not only was it a welcome escape from my symptoms, but it energized me and helped me feel connected to my authentic self again. I knew then that painting would become a big part of my life and my self-care routine. It turns out that painting, and other forms of creativity, have many proven benefits to both our physical and mental health. Practicing creativity helps boost the immune system and improves memory and cognition. Being creative also helps to lower stress, anxiety, anger, and depression. In addition to painting regularly, I also started journaling and writing often. One of the most difficult things about living with a chronic illness is coping with social isolation and the feeling that no one else can quite relate to what you’re going through. So I turned to my journal to express my thoughts and experiences freely. Journaling was very cathartic in that sense, but it also helped me to document my daily symptoms. Eventually, this allowed me to recognize patterns related to my symptoms, which helped me manage them better. There is extensive scientific research that shows the numerous positive health benefits of journaling and expressive writing. The psychologist and researcher Dr. James Pennebaker’s studies on this subject revealed that expressive writing about traumatic or emotional experiences on a regular basis improves emotional well-being. Additionally, expressive writing actually improves physical health – it lowers blood pressure, helps improve immune system function, mitigates stress, and improves lung and liver function. Over the past several years, I’ve enjoyed using guided journals that contain inspiring or thought-provoking writing prompts. (One of my favorites is Meera Lee Patel’s “Start Where You Are.”) I wanted to find a guided journal that contained writing prompts related to chronic illness and disability. When I searched and searched but couldn’t find one, I decided to create my own! Over the last couple of years, I wrote and illustrated “The Healing Journal: Guided Prompts and Inspiration for Life With Illness.” The book was born from my personal experiences living with illness – from my struggles to my triumphs — as well as my experiences talking with many other people who live with chronic conditions. It’s full of positive affirmations paired with journaling prompts that relate to the common challenges that arise from living with a chronic illness, such as learning to advocate for your health amongst medical professionals, as well as with friends and family. It was important to me to illustrate the book myself, as painting has been such an integral part of my own healing. The book is full of my watercolor botanical paintings, which are intended to bring soothing elements of nature indoors to people who may have difficulties getting outside. Through “The Healing Journal,” I hope to share with other chronic illness warriors that journaling and creativity have the power to help us live well. The prompts in the book encourage the reader to write expressively, think positively and mindfully, and develop the self-care tools and strategies that are uniquely suited to them and their illness. The very act of writing and illustrating “The Healing Journal” was therapeutic for me. I’m grateful to now be in a place where my chronic illness, though still present, is relatively well-managed and plays a much less limiting role in my life than it did previously. My greatest hope is that my story inspires others living with illness to try picking up a pen or a paintbrush! (Let me know in the comments below if you do!)

    Community Voices
    Community Voices

    An Uncertain Future

    <p>An Uncertain Future</p>
    2 people are talking about this
    Community Voices

    Extremely Dry & Itchy Skin? New Diagnosis? I Have Done Nothing New.

    <p>Extremely Dry & Itchy Skin? New Diagnosis? I Have Done Nothing New.</p>
    2 people are talking about this