Ankylosing Spondylitis

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Ankylosing Spondylitis
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  • About Ankylosing Spondylitis
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    CML Mair
    CML Mair @sisterfate18

    So much stuff!!!

    I have been having a really hard time and it’s been a reallly long year for my family.
    About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

    I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

    When I was younger my brother more than once sexually assaulted me.
    I don’t know if it actually considered that
    I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

    My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

    So the situation is idkw but after he had his stroke I just couldn’t speak to him.
    I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

    I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
    He has been trying to get in contact with me but I have thwarted contact.

    My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
    I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
    I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

    #SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

    8 people are talking about this
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    Nicola
    Nicola @trampolinistwithas

    The grief of losing another food from my diet

    I have #IrritableBowelSyndromeIBS which also triggers #Migraine s. When I got diagnosed I was started on the low fodmap diet and after elimination and reintroduction I could eat two of the six of the fodmap groups... and fodmaps are in almost everything. Over the years since I have started reacting to more and more foods. Now I react to all of the fodmaps, and even some in "low" fodmap quantities. I'm also no starch for my #axialSpondyloarthritis (#AnkylosingSpondylitis ). So my diet has become VERY limited.

    This week I've identified another new trigger and lost yet another food: strawberries.

    It may seem like such a small thing, but my heart is broken. I love strawberries and they have been a staple in my diet since I developed IBS. Now for some reason I'm reacting to them, even in a low fodmap quantity 💔

    I struggle enough with food as it is. There is so much I can't have it's hard to find food I can eat without consequences and I'm bored of what I can eat. Strawberries were one of the few foods I still enjoyed and looked forward to eating. Now it feels like there are no treats left.

    I miss food.

    This is just another loss on the #ChronicIllness journey. And I will grieve for this one as I have all the others. And when I am done I will pick myself up and move forwards, because there's nothing else I can do 😞

    (I've been working with a functional medicine practitioner for nearly a year to try and improve my gut health and be able to eat more foods long term, which may be why this setback is quite so deeply emotionally painful.)

    7 people are talking about this
    D. Tyler Webster
    D. Tyler Webster @dtweb
    contributor

    How Ankylosing Spondylitis Helped Me Learn to Love My Body

    My body was carried by a woman who when faced with adversity plants her feet and remains stable no matter the severity of the storm. It was made by a man with vigor, an insurmountable capacity to endure challenges, and the ingenuity to make a meal with a few forgotten pantry staples. Both have never cowered or run from anything — even each other — when at times they should have. Instead, they persevere, sometimes shaken, but nonetheless, moving forward. My mom’s favorite saying is, “Chapter closed.” This is typically said when something traumatic has happened and we no longer want to discuss it. We instead begin the next chapter of our lives and hope for more. I’ve found myself saying “chapter closed” after a flare, or the failure of another medication. I’ve closed many chapters recently. When I become frustrated with my body and its inability to withstand the normalcy of a full-time job, or its pain that leaves me reliant on a cane, I come back to the things I’ve inherited from the people I love. I remind myself that I embody the same vigor and willingness to persevere. Though I am flawed, I do not run or cower, I plant my feet and endure the storm and remind myself that my body is a good place to be. I will not have biological children. I wouldn’t want to pass along the pain that comes with owning a body of my particular genetic mutation. If at some point I do have a child, when they are faced with the inevitable obstacles of having a body and navigating the human condition, I hope to pass along that same vigor and willingness to preserve. Though it won’t be hereditary, it will be taught. I was never taught to love my body; for years, I found comfort in destroying it. I pushed myself to extremes, and I prided myself on the ability to endure the damage I inflicted. Maybe if I was taught to love my body, to nourish it, and speak kindly of it, I wouldn’t have sought comfort in harming it — while unbeknownst to me, it was harming itself. When your body begins to recognize its own tissue as foreign, and you’re presented with an illness that is out of your control, you become regretful of the harm you’ve inflicted on yourself. I wish I spent more time loving my natural weight instead of denying myself second helpings of my favorite meals. I wish I spent less time drinking. I wish I had spent more time being consciously grateful for my body’s abilities instead of doing my best to hinder them. I didn’t feel like my body was a good place to be then, which in retrospect is why I spent so much time being removed from it. Now, even while managing chronic illness, my body is a good place to be because I take care of it. I honor its fatigue, I support it with a cane, and I listen to its desire for a second helping of my favorite food. I am consciously grateful for my body’s abilities, even when they are limited. I can’t imagine hating a body that was created by two people’s desire to personify their love. I have the height of my grandfather, the easily tanned skin of my father, the dark features of my grandmother, and the bone structure of my mother. I see the characteristics of the people I love that weren’t assigned to my DNA in my siblings, and it seems impossible to hate my body when it is made from and shared with the people who taught me what it means to be a good person. I feel the softness of my belly, the weight of the bags under my eyes, the dull ache in my legs, and I fall asleep knowing tomorrow there is time to love the parts of myself I was unable to love today.
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    FairyGodpa
    FairyGodpa @fairygodpa

    Art cards

    <p>Art cards</p>
    13 people are talking about this
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    Michaela Lovell
    Michaela Lovell @michaelalovell66

    Equal Consideration. Is there such a thing where a chronic, invisible illness exists?

    <p>Equal Consideration. Is there such a thing where a chronic, invisible illness exists?</p>
    3 people are talking about this
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    Pain59
    Pain59 @pain59

    I'm new here!

    Hi, my name is Pain59. I'm here because I am looking for new treatments to help manage my severe pain In my entire spine and osteoarthritis. Looking to get my life back . Don't want anymore surgeries or implants. Anxiety has increased due to not being able to keep my pain at bay . Been on same pain management regime for years. Medical Cannabis not strong enough to cover my pain otherwise that would be all I would be using.

    #MightyTogether #Anxiety #AnkylosingSpondylitis

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    FairyGodpa
    FairyGodpa @fairygodpa

    Yay images are working again!

    <p>Yay images are working again!</p>
    20 people are talking about this
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    Ellabenson078
    Ellabenson078 @ellabenson078
    Community Voices
    julz67910
    julz67910 @julz67910

    ♾💩

    I just turned 39. I have CRPS (2 years in), Degenerative Disc Disease, Depression & Anxiety, PTSD, Spinal Stenosis, Degenerative Osteoarthritis, Spondylisis, Chronic Migraines, Fibromyalgia, Kidney Disease, Ovarian Cysts that burst and come back sporadically, Vitamin D & Potassium Deficiencies. There’s more but those are the ones I can think of right now. I have lived with all of these for about 15 years, except when I thought I couldn’t handle a bit more pain, CRPS invited itself into the fold. Why not, right? PAIN IS WHAT I HAVE! Just like most of you on this site. I guess I’m typing this so I don’t shoot myself in the head. I’m a single mother of 4. Car accident survivor, domestic violence survivor, brutally raped by more than one person, more than one time in my life survivor, one of my children is the product of rape and attempted murder survivor. With all the physical and emotional pain, medications have been my lifeline for about 15 years now. They keep my mind from going off the deep end, but as of now, I have one foot off the cliff. I was taking CBD Oil from my pharmacy. It helped so much in combination with all my meds. When I took my drug test, it came up as THC. This is illegal in Kentucky. So how is CBD Oil legal? No wonder it helped me so much! The doctor took away ALL PAIN & ANXIETY MEDS. My spinal cord stimulator helps a lot but it’s currently maxed out. I feel like my medical records are now tainted and no doctor is ever going to help me. WTF am I here for? To live in agony and never get out of bed again? #ComplexRegionalPainSyndrome #ChronicDepression #PTSD #AnkylosingSpondylitis #Migraine #Arthritis #OvarianCyst #Fibromyalgia #KidneyDisease

    8 people are talking about this
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    D. Tyler Webster
    D. Tyler Webster @dtweb
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