Antiphospholipid Syndrome

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I'm new here!

Hi, my name is ReedtamS. I'm here because I want to learn more about my diseases and conditions. Like many people with rare diseases, I accumulated over 30 diagnoses before I was diagnosed with Pulmonary Arterial Hypertension, and a few more since then. Along with all of those diagnoses are the medications to treat them. I take over 35 medications every day. I am trying to live my best life, and educate myself so that I can advocate for myself.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PulmonaryArterialHypertension #MixedConnectiveTissueDiseaseMCTD #IdiopathicPulmonaryFibrosis #Arthritis #AntiphospholipidSyndrome #Hypertension #HypothyroidismUnderactiveThyroidDisease

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Warriors Still

As many of you know, I almost lost my ability to walk in 2019. It was one of the most difficult ordeals I've had to go through.

Being diagnosed with Lupus was confusing and absolutely heartbreaking. It felt as if my world had the rug pulled out from underneath me. I learned very quickly that the everyday task of walking can be taken for granted and that having kids wasn't going to be in my future.

I am currently in remission and I give praise that I am able to walk, and I grieve for the life that I will never live.

On October 12th my family and I will be joining the Walk to End Lupus in San Antonio. I ask that if you are able and find it in your heart, to consider donating to my team "Bri's Lupus Warriors".

The reality of lupus is this- I’ve spent more time at the hospital this week than I have at work or at home.

Lupus has absolutely turned my life upside down.

My legs hurt from the clots forming in them, my veins hurt from having blood drawn 6+ times this week alone, my kidneys are shutting down from kidney failure.

I never thought this would be my reality but here I am. Yes, I have an amazing support system, but this is essentially a solitary experience. Writing a will shouldn’t be for 27 year olds.

#Lupus #AntiphospholipidSyndrome #ChronicIllness

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Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

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I hate prednisone

So I was on a pretty heafty dose of prednisone last year during the summer die to my Lupus. I had very limited mobility and it was overall a pretty terrible experience.
Anyway- I ended up gaining a lot of weight very quickly, and it’s become very difficult to loose.

I used to be 190LBS, I’m 5’6, with broad shoulders. So I looked pretty healthy, and I was very confident and proud of myself!

But because of my Lupus and medications like prednisone, I’m now 235LBS and I just feel awful. It seems like the prednisone has made it so much harder to loose weight., even thought I have stoped taking it months ago!
I’ve been dealing with depression and anxiety, as well as overall crippling fatigue- people, including doctors- keep telling me “just get moving! Go on walks! Eat healthy! Don’t eat processed foods!” But they seem to forget I struggle with chronic pain, horrible fatigue, exercise and heat intolerance and an overall lack of good days.

So how on earth am I supposed to loose weight? So I can feel better about myself again? I’m loosing hope with it, and I just feel so lost and lonely and exhausted. I’m not flailing anymore,so why do I feel so bad?

Chronic illness is becoming too much for me.
#Lupus #LupusNephritis #SystemicLupus #SystemicLupusErythematosus #ChronicFatigue #ChronicPain #KidneyDisease #AntiphospholipidSyndrome #Vasculitis #Depression #Anxiety #Prednisone #CheckInWithMe #PTSD

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Choose your Battles

In my season of change I stumbled upon this picture.

I started a new job and it’s hard to get to my specialists and doctors in time but they provide me with great insurance- choose your hard.

Nick and I just got engaged last week- choose your hard.

I lost 10 pounds from stress - choose your hard.

Nick and I don’t communicate well but we are working together and choosing each other every day- choose your hard.

I may never be a photographer again but sometimes the reward of health insurance when you’re chronically ill… outweigh your passions- choose your hard.

I have a lot of decisions to make. And I have to make sure my health comes first.

I love you, and I’ll see you soon 🧡
#Lupus #AntiphospholipidSyndrome #HypothyroidismUnderactiveThyroidDisease #MentalHealth #Bipolar1

14 reactions 3 comments
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Cochlear implants in APS Patients

Hi guys, it’s been a long time since I had posted anything. After many years losing my hearing from the left side (I was born deaf from the right side) , earlier this week the ent doctor said I am a candidate for cochlear implant. My head is spinning. I am happy for this possibility, but anxious that it will be so weird to hear and understand everything . Then, I am also wondering if anyone with aps have ever had this experience. What was the outcome? #Anxiety #AntiphospholipidSyndrome #Deafness #CochlearImplants

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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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