Sarcoidosis

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Sarcoidosis
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    Community Voices

    Has anyone experienced a serious side effects from a medication?

    Going for Catract surgery in 4 days caused from taking a very strong medication for just 6 months.
    #Sarcoidosis ,#Cataracts ,#Pain ,
    #side Effects, #chronic Pain,
    #eye Surgery

    2 people are talking about this
    Community Voices

    How long did it take you to get diagnosed with your rare disease?

    <p>How long did it take you to get diagnosed with your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    18 people are talking about this
    Ellen Lenox Smith

    Feeling Left Behind With Chronic Illness

    I recently could not figure out why I was feeling an even stronger sense of isolation and blue when I have had to live with Ehlers-Danlos syndrome and sarcoidosis for 71 years. And then I heard my voice sharing with my husband, as he was off for the dog walk into the woods, “I wish I could walk there too.” That was it; it is winter the roads are icy and lumpy and if I step on the ice, my feet will sublux, the hip with slip out of position, and a double up-slip of the hips will happen. So to keep out of extra pain, I make that unwanted decision to stay inside and safe. One of the many issues those of us face living with medical conditions is the numerous times we have to choose safety over participating in activities and events we’d love to be part of. Not respecting our limitations ends up causing added stress and damage to our bodies. But not joining in with others causes isolation and the loss of joy seeing places we love or would enjoy learning about and experiencing. If others think this is fun, please climb into our bodies and minds and experience the loss we feel. I would love to hike into the woods, walk down that snow-covered rutted road, climb that hill, lift that grandchild and snuggle with them, get that tight hug I so miss, and climb those steps to the top, for example. It is so hard to not participate in what is so “normal” to many and dangerous to me. Can you relate to losses like this? Some days I can be strong, step away from those opportunities, and keep that smile on my face. And then other days, the loss of participating in activities both alone or with others just breaks my heart. I do notice that it bothers me the most when the weather is playing games with my condition. Storms arriving always add discomfort and make my body more inflamed, thus making my emotions tougher to cope with. But through the years I have learned to listen to my body. Understanding my limitations is hard to accept, but allows me to smile and experience a better quality of life. But when one of our four sons and his family with two precious little granddaughters moved to Tulum, MX, I had to again fight that terrible sense of loss. I can never travel there to visit them. Despite suggesting my husband go and enjoy the trip, he refuses to leave me back home. Traveling out of the country with a sternum that shifts easily out of position with my bi-pap not being able to correct when the airflow restriction occurs, makes me feel so sad and so responsible to limit his life too. Because of my condition, we have had to stay close to home to be near the help of my manual PT’s offer. At each appointment, they reposition my structure so I can safely breathe and live the next days. So, on this cloudy, dreary day, I share my emotions with you of fighting off that feeling of being left behind. But I know on my better days, I will return instead on focusing on how to better put these emotions back in check. At least I am alive, at least I have a husband who has never walked away from me with this unpredictability my condition has added to our lives, at least I had the honor of raising four sons and now watch their lives unfold as I age, at least I am more mobile at the moment and able to now write again, advocate, and get to the pool to work out an stay connected to others. The list of positive is right in front of my eyes, and it’s up to me to refocus when this sadness overwhelms my life. May Life Be Kind to You,Ellen Lenox Smith

    Community Voices

    How do you keep your household going with multiple illnesses and only 1 other member in the house?

    If I rest nothing runs smooth and if I don't rest, I run out of energy or the nerve pain gets too intense.
    #chronic pain, # multiple health challenges #Pain , #home , #Sarcoidosis , #Cataracts

    13 people are talking about this
    Community Voices

    If you knew before taking a medication that it would cause cataracts, would you still choose to take it?

    Have been on this medication, 6 months for my Sarcoidosis and now have cataracts in both eyes caused by the medication
    #Sarcoidosis ,#chronic pain, #Pain ,#Prednisone ,#medications ,
    #side effects,# cataracts,#why me

    3 people are talking about this
    Community Voices

    "But you don't look sick"

    <p>"But you don't look sick"</p>
    2 people are talking about this
    Community Voices

    I don't know how to do this thing called 'self care'

    I am one of those ppl who has to stay busy. My body (and my Drs) for some time now, have been telling me to sit more. Mostly it's to elevate my lower legs due to venous insufficiency and ulcers caused by Sarcoidosis. How do I do this, sit more? What are some things that have helped you transition from mobile to sedentary. How do you divide your time between being up and active with being down and resting? What does your rest 'area' look like? Would love some guideance. #mobility issues,#sedentary ,# Sarcoidosis,#chronic pain,
    #Arthritis ,#Fibromyalgia ,#Chores ,
    #Pain

    3 people are talking about this
    Community Voices

    What frustrates you most about living with a rare disease?

    <p>What frustrates you most about living with a <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    20 people are talking about this
    Community Voices

    Trying to feel better

    Man I feel so bad these days. I am trying so hard to do right for myself. I am in day four of no vaping. I try to eat right. Just in general trying to feel better but I still feel horrible. And it doesn’t help that I REALLY want to vape and I seem to be eating a lot in place of the vaping so that is not good. Ugh! My main issues at this time are my sinuses hurting and body aches….especially my joints. My next doctor appointment isn’t till April 8. That feels like forever from now. 🤦‍♀️. How in the world am I supposed to get anything done in life when I feel so dang horrible? #Sarcoidosis #PolycysticOvarySyndrome #MyalgicEncephalomyelitis #ChronicPain #exhausted #vape #Addiction

    2 people are talking about this
    Community Voices

    Doctor dropped me for no reason!!

    Has anyone ever experienced this? How can they do that when your in the middle of their treatment program? #chronic pain,#Pain ,#Pain doctors,# pain management,# patient abandonment,# Sarcoidosis

    6 people are talking about this