Antiphospholipid Syndrome

Hi, my name is waitingforamiracle. I'm here because my brother was diagnosed with antiphospholipid syndrome about 16 years ago. Antiphosholipid syndrome is an autoimmune disorder that causes the body to produce antibodies that attack its own tissues and cells, resulting in abnormal blood clots. This year has by far been the worst year for him yet. He hasn't gone one month without having to go into the hospital for clotting. When he is admitted he is there usually a minimum of 2-3 weeks at a time. I can see it is taking a toll on him. He is in constant pain where pain meds don't even help at this point. I was just hoping to come on here to see if anyone is or knows or someone in a similar situation. I'm hoping to learn more about the disease and ways to help my brother deal with his pain. He is only 35 years old and is missing out so much on life. It is heart breaking to sit by and see him in so much pain and not know how or what to do to help.

#MightyTogether

I really love to be part of this amazing community. Here, we feel safe to share our fears, concerns and also our victories. I was on vacations last week and, for the first time in two years, thanks to the Cochlear Implant I got nearly 6 months ago, I was able to hear the ocean. It was confusing at first, but then, when I realized I was actually hearing the waves it was amazing. Did not feel like leaving the beach lol . It was so amazing that I was able to write a poem about it. It is amazing how the technology can change our lives. I will be forever grateful for this opportunity, specially after more than 20 years losing my hearing due to #APS #AntiphospholipidSyndrome and other factors.

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

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

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

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