juvenile rheumatoid arthritis

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juvenile rheumatoid arthritis
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    Community Voices

    I have some sort of amazing news!

    <p>I have some sort of amazing news!</p>
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    Community Voices

    Update on stuff :)

    Hello all! It has been a while. I hope everyone is doing alright.

    I am in college now, in central NY. It has been quite an experience trying to navigate my health from a new place.

    I just got a new diagnosis: Milroy's Disease. My ankles swelled up and originally I thought it was my juvenile idiopathic arthritis flaring. I called my doctor and she had me go on a double daily dose of naproxen to reduce the swelling. For some reason that didn't work, so she requested that we do a video call so she could see my ankles. She saw the swelling that was going on (more in my right ankle than my left) and she felt like something was off. She had me press on my ankle and see if I left a fingerprint and weirdly enough, it did. In the end, she said she was pretty sure it was lymphedema, but wanted to make sure.

    She sent me to my college's health center for bloodwork and sent me to have an ultrasound of ankles. Crazily enough, the hospital here told me over the phone that "They don't have the proper equipment for that." I was like, "It's just an ultrasound..." But the hospital apparently doesn't have equipment to do sonograms 😅 This concerns me, not gonna lie. I know this is a small town, but I assumed that any town in a developed state like NY would have ultrasound machines. I stand corrected. In the end, I had to shlep across town to go to an imaging center that thankfully DID have an ultrasound machine, and I got one done.

    The scan showed that I have inflammation of the soft tissue (lymphedema) but no synovitis (arthritis inflammation). This was both reassuring and concerning. It's reassuring because that means that my Enbrel is still working and I am still in remission :)) but it concerning because I now have a whole new health condition. It makes me sadder that this condition doesn't have a medication or anything that can make my symptoms go away or put them in remission. I did get compression socks, which are helping with the swelling and some of the pain. It just frustrates me that whenever I make progress in one area, I seem to have something else crop up elsewhere. Why is my body so broken?!

    Anyway, I'll stop complaining. I am doing quite well in school TG, and my other health issues are pretty well controlled. My GERD is flaring a bit (probably because of my food choices here), but my IBS is stable. I've been fatigued, but my doctor encouraged me to exercise when it comes upon me instead of taking a nap, and it's been helping for the most part.

    I hope you all are well and would love to hear from you 😘 Sending love and hugs!

    #Lymphedema #MilroysDisease #ChronicIllness #ChronicPain #MentalHealth #Depression #Anxiety #Disability #chronicmigraine #RheumatoidArthritis #JuvenileIdiopathicArthritis #JuvenileRheumatoidArthritis #Arthritis #Pain #Swelling #relief #College #collegehealth

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    Community Voices

    What should I do-I am concerned my adult daughter is having suicidal thoughts. Her ex boyfriend shared his concerns (and some texts). #SuicidalThoughts #ChronicPain #RheumatoidArthritis #JuvenileRheumatoidArthritis

    I checked on her(not mentioning suicide concerns), that the ex was concerned and to make sure she was ok. She told me to ignore the ex, he was being dramatic, that she wishes she could express how she is feeling without everyone thinking she is going to kill herself. Still, I don’t want to ignore warning signs...

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    To the Person Who Told Me My Chronic Illness Is 'All in My Head'

    I don’t like talking about being chronically ill, almost as much as I don’t like being chronically ill. I have never liked talking about it and I probably never will. I accept it’s a major part of my life, and while it has helped shape me as a person, I will never allow it to define me. So if I decide to confide in you, whether I tell you I’m nervous about an upcoming appointment or I ask you if you have any medicine for my brewing migraine, I expect you to understand I’m not doing it for attention — I’m doing it because I need help and I really trust you. When I pluck up the courage to mention having long-term health conditions, more often than not I get comments like, “But you look so well,” “You’re too young for that” or “I’m sure it’s all in your head.” And while you may have good intentions by saying these things, I could really do without these judgments. I have been told by someone I would have considered a friend that all my chronic fatigue syndrome, chronic migraine, irritable bowel syndrome and juvenile rheumatoid arthritis symptoms were psychosomatic, because she’d just learned about it in a psychology lesson. When you say these things, it really does make me feel like I’m a fraud. When you belittle me after I trusted you enough to speak to you about something so private, you’re basically telling me I’m a liar. Do you really think if I had the control you seem to think I have over my illnesses, I would choose to be in pain 24/7, choose to be too tired to go out with my friends and family, choose to feel so awful all the time that I have to convince myself to get out of bed, or choose to take so many pills and medications I’ve lost track of them all? While you probably don’t recall what you said or even remember that we had a conversation by the time you got home that day, I will never get that pleasure. Because now, every time I see you, all I will be able to think of is how you made me feel. When you tell me it’s all in my head, sometimes I do wonder, “What if they’re right? What if this is all my fault?” When you’re questioned on an almost daily basis about your health and have been told there’s nothing actually wrong with you by people who have never even heard of your condition, it really takes a toll. Every time someone says something negative about your health, a little piece of your self-belief gets chipped away. Every day, my happiness and self-confidence that I feel make life worth living are whittled away by other people’s ignorance. I can’t help but wonder if you would be so quick to judge if you had to live like me for a day, or for even just an hour. Would you find it so easy to say it was all part of my imagination? Would you think it would be OK for someone to say the things you said to me? So next time I, or anyone for that matter, opens up to you about their health, please just take the time to realize that speaking to you about this is probably one of the hardest things they will have to do all day. Please don’t make comments without thinking about them first. Please don’t jump to conclusions about things you have probably never heard of. But most of all, please just be understanding and say, “I’m here for you.” The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images