Antiphospholipid Syndrome

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Antiphospholipid Syndrome
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    Lamenting Your Birth

    Even Job in the Book of Job in the Bible laments his birth. In Job 1:20-21 we see that when he is first cursed and tempted by Satan, he falls to his knees and worships God.

    Skipping forward to when he laments his birth in Job 3 he cries out his pain. Why do good people suffer? He has always been a good and faithful servant of the Lord and still Job 3:11 he woes “Why did I not die at birth, come out from the womb and expire?” Job is in so much physical pain that his mental strength is taking a toll on him as well, asking God these things.

    It’s important to note that God did not inflict this pain on Job. He only allowed it by the hands of Satan to test Job. Everything we have, is from the Lord. God does not scorn or demand us to be perfect in faith- but rather, allows us to come to Him in our time of need to draw closer to Him.

    For me personally, I feel as though I am Job. Living with so many illnesses, #Lupus #AntiphospholipidSyndrome #BipolarDisorder and more that I just can’t keep up with. Every day I feel as though I am being punished, pushed to the edge of eternity. Every day I lament my own birth-why me? I can’t go on vacations because im too sick and my medical bills are stacking up. I can’t work normal jobs because im too frail and weak. I can’t get on disability because Im too young. I’m stuck in a never ending catch 22 if I need to work to go to the doctor and go to the doctor to live.

    But what kind of life is this? This is not the kind of life I want. I want to travel, at least a little. I want to meet people. I want to be happy and not feel constantly stuck in my failing body. I want to turn my “why,God” into “thank you,God” but it’s hard to find the light when all I see is darkness.

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    Redemption Arch

    The Process works. I know, I know. Everyone says this and no one REALLY believes it, ya know?

    Have we ever stopped to ask ourselves why we don't believe it? Is it because we don't want it to work? Or maybe we're afraid that it WILL work?

    Whatever your reasoning is, I want to tell you, that the process works- maybe not all the time, but most of the time.

    That's why we have science and doctors and medications and therapy and small groups.

    Because it's been proven to work.

    In 2019 I lost my ability to walk and it took a toll on my mental illness.

    Every atom, every neuron, and every synapse is connected in our body. We are affected by everything around us. So when I lost my ability to walk, my mental health took a nose dive.

    I was hanging off the edge of a cliff.

    I entered treatment and, man, I prayed harder than I've ever prayed before because you really don't know what you have until it's gone.

    I worked that program, and I took every medication shoved down my throat and prayed that it worked. I went to physical therapy twice a week.

    It took nearly 6 months... I slowly regained my ability to walk.

    The process works and to be honest, I didn't think it would. I didn't think it would work at first because I was so stuck in my way of thinking that I was being punished, that I was stuck in that way.

    But consistent medication, therapy, PT, and check-ups are the key to keeping your health in balance. Eventually it becomes like breathing- second nature.

    The process SUCKS because it requires change. It requires work. But it produces fruit. I regained my ability to walk, I have so much more energy and I have the gift to be able to tell people that maybe, just maybe- this isn't the end and it DOES get better.

    There is redemption. Trust the process.

    *Pictured below is when I began losing my ability to walk on my 23rd birthday in 2019. I could only stand for short bursts in a boot.*

    #trusttheprocess #Bipolar1Disorder #Lupus #AntiphospholipidSyndrome #APS #SLE

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    Be the Light

    I wouldn't wish my illnesses, mental or physical, on my worst enemy. I wouldn't. Because I know the damage it has done to my psyche. I know the trauma I've endured because of it.

    I wish I knew the reason for my suffering- I'd like to believe it's to be a light to shine onto others. I'd like to believe it's to bring others hope. That you can get through this, yes, YOU.

    I'd like to believe that Beyla lights up the room when she waltz's in by my side in a perfect heel like the good dog that she is.

    I'd like to believe that Bipolar, Lupus, Antiphospholipid syndrome aren't all I have- that they are just little parts of me. That I control them and they are just some little tokens that play a part in my life because I have a larger role to play somewhere else.

    I'd like to believe that we're all here for a reason and that sometimes breathing is enough.

    My goal is to inspire and awaken a want - no, a need - to live.

    #Bipolar1Disorder #Lupus #AntiphospholipidSyndrome #BipolarDisorder #ChronicIllness

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    Past & Present

    On January 24, 2020 I posted:

    ~

    Thoughts when the pain is too much to bare. #Lupus #BipolarDepression

    "I am trying so damn hard to have a positive outlook on life. But days like today, Lupus flare ups, make it really difficult to do that. Days like today when I cant even bring myself to get out of bed because the pain is too much and there are no meds strong enough to ease it. Days like today when the demons whisper in your ear that no one cares. Days like today make me want to give up. But I don't."

    ~

    Today on July 17, 2022 I had another really bad lupus flare up. Today I went to get out of bed to use the restroom and fell over due to the pain.

    Today my loving significant other rushed to my aid.

    Today, my mom brought me McDonald's (not the best choice but she wanted a kid's meal).

    Today, my counselor told me I have used my allotted time to throw a self-pity party and it was time to move on.

    I gave myself grace and I allowed myself to have a positive outlook on life.

    Today, I am no longer in remission and that's okay.

    Today, I have a support team of loved ones surrounding me.

    Today, I am not afraid to stand on my own two feet no matter how much it hurts.

    Days like today make me want to give up, but I don't... because I am worthy and I am loved. #Bipolar1 #Lupus #AntiphospholipidSyndrome #Bipolar #BipolarDisorder #ChronicIllness #ChronicPain

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    Antiphospholipid Syndrome and joint pain

    Is joint pain part of APS? Is that why people with APS go to rheumatologists?
    I have had APS for about 15 years but this is the first time I have had alot of joint pain. I've had migraines, brain fog, memory loss, strokes, leg pain, fatigue

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    Hi everyone! I stumbled on The Mighty while looking at memes and thought I would give this a try. I’m almost 4 months into my APS diagnosis and am still struggling to learn things I feel like I should know. Do you have any suggestions for good, easy to understand resources?
    #AntiphospholipidSyndrome

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    Pep talk?

    Hey everyone,

    I need to go though another round of medical care. We moved and I have specialists in my known diseases I need to get established with, and I have new and alarming symptoms which may have serious causes that need to be evaluated.

    Even though I'm being treated well currently by my medical providers, and have real diagnoses for the symptoms that were originally called psychosomatic, I'm having a lot of trouble trusting and not having panic attacks. I'm worried any little thing I say is going to make them change their minds and not help me because it's "psychosomatic", and I desperately want and need help right now. I don't want to keep being this sick, and if the knots can be untied slowly and in the right order, Lord willing perhaps I don't have to be this sick.

    So how do I do it? How do I get through medical care without losing my mind?

    Anyone have a good pep talk? :-) ❤️

    #RareDisease #Disability #LivingWithPOTS #PsoriaticArthritis #PeriodicParalysis #Anxiety #PanicDisorder #CPTSD #AntiphospholipidSyndrome #Dysautonomia #MalDeDebarquementSyndrome #OvarianCyst #VonWillebrandDisease #CheckInWithMe

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    What's on your self soothing playlist?

    I have a list of 7 songs that soothe my soul and feel like a giant hug.

    What are yours?
    #Spoonie #CPTSD #RareDisease #Disability #PsoriaticArthritis #PeriodicParalysis #AntiphospholipidSyndrome #LivingWithPOTS #Anxiety

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