Juvenile Idiopathic Arthritis

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    Increasing anxiety due to covid- do you feel the same?

    The last couple of weeks I've found my anxiety is increasing and I think I know why. (Background: both myself and my bf are immune suppressed, he was shielding, and we've both had all the covid vaccines we can)

    Here in the UK restrictions are being lifted more and more. For example for a couple of weeks now there is no legal requirement to self isolate. Yes that's no legal requirement to self isolate even if you test positive for covid 🤦‍♀️ And as of 1st April you won't be able to get free covid tests either. In fact I think the only people who can get free covid tests are those going into hospital and those who are vulnerable to covid and showing symptoms. It's completely crazy imo, but you know there's nothing I can do.

    So the message I'm getting from the government is "go back to normal". This in itself increased my anxiety. Another layer to add to this is the messages I'm getting from work, social media and people in general is "let's do more, see more people, return to the office, etc." This is feeding my anxiety because my brain is going "it's not safe out there because covid and people are acting like covids over... to your fight, flight and freeze battle stations... ***PANIC***"

    I really don't know what I can do to handle this anxiety because practically speaking there isn't anything more I can actually do. I already work from home and thankfully can continue to do so (the message to return to the office is from top level management. My team however are super understanding and supportive!). We already get food shopping delivered and clean it on arrival. I don't see anyone inside with one carefully considered exception: I sometimes have private trampoline sessions in a big hall with only the coach in a mask there, and they're irregular. My parents have a 2 week extra-precautions period prior to seeing me.

    There is literally nothing else I can do to keep myself safe and ease my anxiety. I suppose all I can do is wait it out and wait for my brain to get used to the new restrictions or lack thereof.

    Is anyone feeling similar?

    #COVID19 #ChronicIllness #ChronicPain #Arthritis #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Migraine #RheumatoidArthritis #PsoriaticArthritis #JuvenileIdiopathicArthritis #ImmuneSystem #ImmuneDeficiency #Biologics

    14 comments
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    Helpless #ChronicIllness #Disability #teenager

    Today my mother brought me my toothbrush into my room because I, a 16 year-old, couldn't get to the bathroom (on my own). The pain from my JIA was so severe, that my legs felt like they burned and every step was one too much. I felt helpless. I cried while I looked to the bathroom, 3 metres away from me, but still unreachable.
    My illness and disability always felt like a burden, like something to overcome, but today-... today felt like another level. I never felt THAT helpless, THAT dependent on others, and frankly, it was quite terrifying.
    So I brushed my teeth over a bowl, my mother held for me and I felt ashamed. I felt so much shame, from being seen like that by my mother. Shame from needing her help with something as simple as brushing my teeth. I don't want her or anyone to think that I can't live my life on my own. I can and I will. Or at least that's what I thought, but today made me wonder if that's realistic. Today made me fall apart and left me with the question of what my future will look like.
    #disabledteenager #helpless #future #ChronicPain #Pain #Shame #struggle #JuvenileIdiopathicArthritis #Arthritis #Family

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    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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    See full photo

    Hi there 👋🏼

    For those of you that are new here, hi 👋🏼 I’m Lexi. I’m the group leader here at Caregivers Corner 💜

    A little background about me…

    Growing up I had Rheumatoid Arthritis. In kids it’s better known as Juvenile Idiopathic Arthritis. I was the person receiving care. My mom and I also lived with my grandparents. My grandfather had a laundry list of issues, but the most debilitating was that he was an incomplete quadriplegic. My grandmother was his caregiver.

    Now lucky me grew out of the JIA 🍀 so I started helping my grandparents as soon as I was able. Toward the end of my grandpas life, my mom and I did a majority of the caregiving. I’ve lived this life, my whole life.

    I have made it my mission to advocate for caregivers, because we often don’t get the recognition or attention we deserve.

    This group is for you. Always feel free to reach out to me. I have given workshops for new caregivers, I have pointed people in directions for information I cannot provide. (Chances are if I don’t know, your local social worker does). I’m here for a helping hand and advice where I can.

    Stay strong #Caregivers 💜

    1 comment
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    Some Common Misconceptions About My Juvenile Arthritis

    There are a number of big misconceptions that I encounter as a teen living with juvenile idiopathic arthritis; seropositive polyarthritis. That's the type that's most similar to rheumatoid arthritis.


    One misconception is that kids don't get arthritis. Wrong! It's a different kind of arthritis, yes, but it is just as serious, if not more.


    Another is that if I don't have visible inflammation, then I must be either faking or it's not that bad. This is so incorrect! My arthritis is thankfully not visible, but that doesn't mean it's not there. It means that I need to get it under control BEFORE it deforms my joints. Once they're deformed, it's too late. I even have erosions on my bones already, but the average person can't see that. It's only seen through a specialized scan. So the fact that my fingers don't look like sausages is not a reason to say that I'm "just lazy," especially when I'm trying my best under difficult circumstances.


    Yet another is that my arthritis is limited to a very small specific area. It's not! I have it all over the place. It stems from a faulty immune system, so when my joints are attacked, my body doesn't discriminate. My jaw and neck are affected just as much as my wrists or knees or anywhere else that I have the arthritis active.


    Now one that bugs me a lot: Occasionally, when long distance walking is needed (such as amusement parks), I use an electric wheelchair to get around. Otherwise I would be in excruciating pain from my hips, ankles or knees. What bothers me is that people get shocked when they see that I can walk. Needing to use a wheelchair doesn't mean that I can't walk at all! I can, just for distances, this is much more preferable. I do not have the option of just sucking it up and walking long distance or my joints will swell. So definitely a common misconception is that a person using a wheelchair can't walk at all, although many people use wheelchairs out of convenience though they can walk somewhat.

    Comment down below if you also deal with these misconceptions or other ones! Would love to hear your stories. Lots of love to all!

    #Arthritis #JuvenileIdiopathicArthritis #RheumatoidArthritis #kidsgetarthritistoo #MISCONCEPTIONS #Wheelchair #Disability #ChronicIllness #ChronicPain #youdontlooksick

    4 comments