Antiphospholipid Syndrome

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Working with Chronic Illness

I was laid off from my dream job the day before Thanksgiving. My dream job came in the form of being a photographer for a magazine with full benefits and a flexible schedule so I could see my specialists during the week, if needed.

Now, I’m reeling- spiraling, panicking.

I don’t have insurance anymore, I didn’t have any money saved up because I was in the process of baying down credit card debt, medical debt, and my astronomically high car note.

I have cried about it ever day and have ultimately, at the end of each day, decided that I just need to Boss Up.

But how? When #Lupus feels so painful and weak that it’s hard to work a 9-5. When #AntiphospholipidSyndrome makes me go to the hospital 2 times a week to check my INR, they’re not open on Saturdays.

I have had people tell me to just file for bankruptcy but my dog would be considered an asset and if there’s ever even the smallest chance of someone taking Beyla? It’s not worth it.

I’ve had people tell me to file for disability but that puts a cap on how much I could make. It means that that cap is so low that my boyfriend, Nick and I could never get married.

I’m scared. I’m terrified of losing my car, or more importantly, Beyla. I’m not sure what God’s plan are- but I know they’re greater than my own. #ChronicIllness #MentalHealth

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New to the Group- Hello!

Hi, my name is Bri.

I’m a 27 year old who was diagnosed with Lupus and anti phospholipid syndrome in 2019 after losing my ability to walk for a short time. I’m still reeling from the aftermath and coming to terms with what this means for the rest of my life.

I’m trying to learn my new way of life from here on out- meaning no children for me and my amazing boyfriend who has stood by me for nearly 3 years.

I’m looking for hope and encouragement here on the Mighty.

I love you, and I’ll see you soon.
#Lupus #AntiphospholipidSyndrome

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You Will Be Found

I have a Bernese Mountain Dog, Beyla, that is essentially a failed therapy dog. She's completed all of her tests except therapy prep... why? Because when I'm crying she barks in my face.

Today was rough day. I had to drop off my urine in a bucket at a lab and immediately drive to the Hemotologist for lab work to make sure the blood clots are under control for #AntiphospholipidSyndrome

These aren't sentences that healthy people have in their vocabulary and I never thought they would be in mine either.

On my way home from the pharmacy where I was picking up 2 of my 11 medications that keep me alive, I was thinking to myself how my boyfriend, Nick, would be better off without me- how I should break up with him and release him so that he could move on with his life. So that these words aren't in his vocabulary as well.

I made it home and I turned on the musicals that I love to listen to... specifically "She Used to Be Mine" from Waitress which Nick sings to me sometimes and I sobbed.

But then "You Will Be Found" from Dear Evan Hansen came on. Beyla began to bark in my face and I didn't feel so alone anymore.

"When you're broken on the ground, you will be found."

"From Now On" from The Greatest Showman came on on shuffle (another song that Nick often sings to me) and I just knew. I couldn't give him up. He is the light and love of my life.

.#Lupus  took my ability to walk for a short while in 2019. It's taking my uterus in a hysterectomy at age 27. I will not let it take the love of my life.

.To Beyla- Thank you for breaking me out of my depression and stupor by barking in my face. You're my perfect girl

.To Nick- I love you with every fiber of my being. I love you through all of our good days and even more on our bad days. Thank you for staying by my side. I love you fearlessly, endlessly, and kinda forever.

To those who stuck through this long post- I love you, & I'll see you soon.

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National Suicide Awareness Day

September 10th. National suicide prevention day.

1 person dies by suicide every 40 seconds
500,000 people died by suicide last year.
Suicide prevention is everyone’s business
Suicide is preventable.
And no, suicide is not selfish.

I’m just a girl who’s been there. We need to talk about suicide and mental health awareness to end the stigma. It can save a life.

Stay for all the sunsets that Jesus himself hand painted
Stay for all of the overpriced coffee at Starbucks
Stay for your pets butt wiggles when you get home
Stay for that Chinese food you wanted to order
Stay for your chosen family
Stay for that random stranger that followed you on Wattpad in 2011
Stay because your dog will never understand why you never came home
Stay because there is a higher power and He is working in and through you and around you.
And He is making all things new.
Stay because tomorrow needs you.

I have struggled with depression and bipolar1 disorder from a very young age. But since being diagnosed with lupus and anti phospholipid syndrome in 2019, my mental health has taken a nosedive that I was not prepared for. In 2019 I lost my ability to walk. I had never felt more like a physical, emotional, and financial burden on my family than when I couldn’t get myself out of bed. There are still days that my lupus flares and my legs hurt and I have trouble walking around my house.

There have been days, and there will be days, that I feel like a burden. But I have to remember that I’m here for a purpose greater than my own understanding. “The world is not better without you in it” even when it feels impossible to overcome. The view is always better at the top. So keep climbing even when your legs hurt.

Hope is real. Help is real.
I love you, I’ll see you soon 🧡
#Bipolar1 #Bipolar2 #BipolarDepression #MentalHealth #Lupus #AntiphospholipidSyndrome

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Grieving a Life You Cannot Live

I don’t think I’ll ever stop grieving. Yearning.

I am no longer in remission for lupus and due to this many other health complications have risen up. My pain level is at about an 8/10. And now, I, a 26 year old female with no children, will need to have a hysterectomy that has been scheduled for November. I am absolutely heartbroken.
My hysterectomy is tentatively scheduled for November pending INR results upon a closer date.

Lupus has taken everything from me at one point or another. Every penny I have for these specialists and procedures. My ability to walk. My ability to have children.

All that is left is an empty shell of the person I yearn to be.

I try to hold onto some sliver of hope- a purpose.
I try so hard to hold onto hope.

But days like today when I was just told with finality that I will never have children…

My partner, Nick, is a saint. He has stayed by my through every doctor, through every diagnosis. He has loved me through the dark.

And right now, in this very moment, I have a choice.

I can choose to spiral and tell myself that yes, Nick is doomed if he stays with me and I can never do anything to help me get through my lupus flare. I could lay in bed in a vegetative state and wallow in self pity for another day. I could give up.

Or. I can remind myself that I matter very much. That the world is NOT better without my in it. That I am not a burden. Not on my mom. Not on my partner. Not on society. I can remind myself that this is just another part of lupus- something I have to live with.

I choose the latter. I don’t know why I was chosen to be as sick as I am. But maybe it’s not a curse. My life doesn’t stop just because I am sick. And I will mourn every single day that I cannot have children of my own. And I will cherish Beyla (my Bernese mountain dog) all the more.
#Lupus #AntiphospholipidSyndrome #Hysterectomy #SjogrensSyndrome #Endometriosis #Infertility

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Stripped Away #Lupus

My life feels as though it is slowly being turned upside down… slowly oscillating… and things that I used to do or enjoy are falling out of my pockets as I turn.

I’m coming to realize that Lupus is more than a disease, it’s a way of life. I can’t drink anymore, can’t get any more tattoo, can’t eat leafy greens, can’t be in the sun too long, can’t get my nails done, can’t get a deep tissue massage, can’t eat gluten.

These are all things I used to enjoy doing. I’m mourning the life I used to live. I wanted so much more for myself than to be where I am, sick, aching in constant pain.

I wanted to be the girl who was kicking ass and taking names. I wanted to be so much more for my life but I’m just the girl who cries herself to sleep and cuddles with her squishmallows.

#Lupus #AntiphospholipidSyndrome #ChronicPain #Bipolar1

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Days like today, I feel too defeated to even type. Today I was told I can never have children naturally by carrying and that my eggs aren’t viable. I am devastated. I have no words to comprehend or explain the amount of grief I feel at this moment. I don’t know how to go on right now… #Infertility #AntiphospholipidSyndrome #Lupus #LupusAwarenessMonth

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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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