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@sickchickandpoppy

Mum and me have been very spoiled today by our nephew/grandson Christy and his lovely fiance Stacey. What a beautiful treat to enjoy with X factor! Ive made us a nice cappuccino to go with it. Gorgeous. 💕💕💕💕💕💞 @patisserievalerie well done you! You've made 2 very recently released from hospital ladies enjoy food for the first time in weeks. Thank you!! 😁😁🏨💕🍰🍰🍰 I've been really down the last couple of days, in lots of pain with spasms which are a side effect of low potassium and also sleeping so much due to yet another autoimmune disease disease: Pernicious anemia, and I've been crying lots too, just not like my usual positive sunny self at all. But honestly, Just a small act of kindness (like an unexpected phone call from a beautiful internet friend who just oozes kindness, Ive been chatting to her online very regularly for 8 years but never actually spoken to in person which also made my day)or my nephew popping in for 5 minutes with a treat because people know how poorly we both are for long visits can absolutely turn a rubbish and weepy day into a much better one. Even texts whilst in hospital asking how I was lifted my spirits so much. Never underestimate the power of kindness. I hope youre all ok and are feeling as well as possible lots of love and spoons as always Jo xxx I'll be back posting normally as soon as Im feeling well enough. This post has taken me so long my cappuccino is freezing!! #thankgodformicrowaves #patisserievalerie #treats #cake #coffeeandcake #meandmymamabear #thankful #grateful #family #love #kindness #kindnessisalwaysagoodidea #kindnesscostsnothing❤️ #sickchickandpoppy #inspirationalpage #positivevibesonly #spoonieblogger #chronicallyfabulous #disabledandcute #lupuslooksgoodonme #antiphospholipidsyndrome #perniciousanemia #fibromyalgia #endometriosis #butyoudontlooksick #chronicillness #invisibleillnessawareness #autoimmunedisease #kidneydiseaseawareness #positivityeveryday at Liverpool

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@alupuslife

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@the_nurse_chronicals

It’s officially been 1 whole year since I’ve gotten my port placed, and one year of people asking me.. how can you be a nurse with a port!?! 😱 (and a gj tube for that matter but we’ll just discuss that at a different time 😝) how can I work accessed!? And the answer is, exactly the same way I work when I’m deaccessed! You can’t tell that I have any lines or tubes whether I’m “hooked up” or not because clothes usually do a fantastic job at hiding it all 👍🏻. Look like a nurse on the outside but a patient on the inside 😂. But in all seriousness, I’ve never had any issues with my port being accessed, and it comes at a great convenience.. for example, I usually go to my Remicade Infusions right after my 12 hour shifts! Being able to do my saline/lactated ringer infusions the day before an infusion, then go to work, then go straight to an infusion without skipping a beat is a lifesaver! A massive blessing my port has provided for me is the access I cannot get from an IV. I found that last December when I had an IV placed after multiple attempts(before I knew I had APS) I ended up getting 2 DVTs . Then, even on lovenox whilst in the hospital in February, having another IV placed because my port was being used for TPN, I began to clot again! I was diagnosed with Antiphospholipid syndrome not too long after that hospitalization from multiple positive blood results and obviously the DVTs. But anyway, my point being, Not only does it take multiple attempts to obtain IV access because of blown veins and weak vasculature (thanks EDS 🙄), but I also form blood clots from peripheral lines as well , despite anticoagulants 🤷🏻‍♀️ no bueno. I’ve been VERY lucky that I have not had any clots in my port *knock on wood* , It is always kept hep locked and I always make sure to take my anticoagulants every day. I’m so very thankful for the access that my port has provided me with- between frequent antibiotic Infusions, Remicade Infusions, hydration Infusions, blood draws- venous access would be very difficult and cause some issues! So happy one year to the little port that keeps on giving 🎉🎊 #portacath #rheumatoidarthritis #antiphospholipidsyndrome #gastroparesis #dysautonomia

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@chronicallyshan

Hi, I don’t have anything special to say, just a reminder that sweatpants make everything better ✌🏻 at Los Angeles, California

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@carolinerachelj

Happy Six Months, Stevie Bach! What a whirlwind it has been! We adore watching you grow and develop each day. We love you so so much and are so lucky to be your mama and papa. This picture includes the three containers of needles and the 600 odd needle caps mama had to use to conceive you and keep you alive. We would do anything for you, our love. You were and are so very wanted. #clexanebaby #lovenoxbaby #clexane #lovenox #antiphospholipidsyndrome #stevie #sixmonthsold #6months #daisy #mumlife #motherslove #mothersloveknowsnobounds #weloveyou #baby #ourbabygirl

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@rennypuspita

Who has Sjogren’s Syndrome, please raise YOUR haaand... 🙋🏻‍♀️🙋🏻‍♂️ . First think first, I'm not your typical #sjogrenssyndrome (SS) patient. I was diagnosed a little over a years ago, after being known to have an #antiphospholipidsyndrome. I DO, have dry eyes, joint pain and dry mouth, but the most affected organ is my brain. . I suffer from Sjogren’s in the brain. It is extremely rare. Over the last year I've taken lots of #steroids and now it has quit spreading in the brain. I suffer from severe #migraines, cannot handle bright lights, and occasionally my left side does not want to work properly. I have lot trouble with concentration, memory, and logic skills. I am continually getting rare manifest from SS like cerebral vasculitis and diemyelination cerebral disease. . Diemyelination cerebral disease (DCD) is fairly new finding in autoimmune field. I was known to be the 16th patient in #Indonesia who had been diagnosed with DCD. DCD mimic #multiplesclerosis (MS), but its different. DCD can only diagnosed by doing MRI and MRS scan, after previously eliminating the possibility of infection, trauma, and tumors. Therapy for this disease is still unknown. So far I have been put on Prograf, a very strong #immunosuppressant drugs. . In a nutshell, being a patient with a #raredisease is quite worry some, because the lack of research and number of cases makes the prognosis difficult to enforce. All therapies used are based on trial & error. There is no standardize for labs markers. Effectiveness of therapy can only be monitor by repeating a MRI & MRS scan every 6 months. . Now it’s important to note, that NOT everyone with Sjogren’s is AFFECTED by demyelinating disease. The diagnosis of Sjogren’s is complex and relies both on history, physical examination & labs tests. . Finally, If you have a few of these symptoms, the first step is to seek counsel from your local #rheumatologist or #immunologist. I found a great immunologist who listens to me, cares about how I am feeling, and discusses the disease with me. Because it's VERY important to have really great medical help. . "Remember, YOU can still have meaningful life with a #chronicillness” 🖤😊✨ at Jakarta, Indonesia

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@rennypuspita

"I am the same person as I was before I was diagnosed with #chronicillness." . I was diagnosed with #AntiphospholipidSyndrome (APS), #SjogrensSyndrome, Cerebral Vasculitis, Diemyelination Cerebral Disease, Cerebral Venous Thrombosis ( #CVT), Raynaud's Syndrome, Chronic Thromboembolic Pulmonary Hypertension ( #CTEPH), Deep Vein Thrombosis ( #DVT), Sticky Platelet Syndrome, #Fibromyalgia, #Depression, Mitral Valve Prolapse ( #MVP), Complete Heart Block, and also a #pacemakerhost (I’ll talk about those fancy stuff later🤞). . If you meet a person, they react on you in the way you react to them. They judge you by your behavior, not by your diagnosis. Chronic illness isn't always visible on the outside. No one writes it on your forehead. . In some cases, it's a piece of paper with code and a name on it. A diagnosis. A word which defines a certain body reaction or behavior. A symptoms. Receiving a diagnosis could be a blessing or a problem. But the thing is that it's not easy do identify a person by a definition. . As a patient with #autoimmunedisease, I used to know very well the struggle of making diagnosis. Of course there are rules, but just a very few amount of patients fit perfectly into the definition which is given in the books. . A diagnosis gives a name to the monster inside of me. It gives me a direction, how my life could develop and shows me my opportunities. At the same time, for me, it's just another name in the long list. Another thing I need to care about. Another word, which judges me. . But the thing is, that I am the same person as I was before. I am still the same person with the same interests. Still a human with dreams. Still someone who tries to keep everything together. . I am an individual human who isn't easily pushed into a certain scheme D: "diagnosis". And even if I adapt it to my situation, a diagnosis is a word on a sheet. Which might help to find a more happy path. It doesn't define me. And it doesn't take a way the shine. . Because I am good the way I am. The things that happened to me, happened for a reason. . God know the truth 😇 at Jakarta, Indonesia

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@darlingnicki1223

Came to the ER for stroke like symptoms thinking it was a TIA like last time, but no I have an actual stroke in my frontal lobe. Still have numbness in my face. So lucky Dan was home! #lupus #antiphospholipidsyndrome #stroke

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@dallasperez

Dr. Kerklaan, the Canadian physician who has changed my life. When i have his cream i can use my fingers, wrists, and elbows like a typical 36 year old. Without it, there are times i don’t have the strength to even make a fist. I’ve used the CBD/THC ratio cream in the past and I’m now trying the New formula CBD pain product. I wish i had the opportunity to sell this product because i am a walking testimony that it works! I feel star struck here! It’s like i met the most famous person in the world! @cbdexpo #drkerklaan #cbd #thc #paincream #starstruck #aps #antiphospholipidsyndrome #cbdexpowest

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@chronicallyshan

Yearly eye exam ✅ Because of Plaquenil I have to have yearly eye exams due to the damage it can cause to the retina and macula. Pictured above is an image of my retina (from both eyes). In the very center is my macula, it’s the thing that looks like a nipple 🤷🏼‍♀️ the bright yellow/white orb to the left of the macula is the optic nerve. My eye doctor told me that we keep an eye on the optic nerve to watch for changes related to glaucoma. In addition to looking at the macula and optic nerve my doctor looked at the vasculature in my retina to make sure it looks normal. Fortunately everything with my retinas looks great and my retina images match the ones taken from last year. I have 20/20 vision with slight nearsightedness in my right eye but not enough for glasses or anything! My eyes are the only things that haven’t gone to shit with my health 😂👀 However what impressed me the most is when I was going through my health issues with my eye doctor he was actually knowledgeable about MCAS and gave me an eyedrop recommendation that I can use for when I have really itchy eyes since it acts as a mast cell stabilizer. I think it’s just the greatest thing when you see a doctor who is educated in obscure-ish health issues 👏🏻 #Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness at Los Angeles, California

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@iamsarahmac

💟 Have you heard of Fibromyalgia? _ FMS is estimated to affect 3-6% of the population and causes wide spread pain all over the body and extreme fatigue. _ After having been diagnosed with multiple chronic illnesses, it is sometimes hard to differentiate the pain between them all, but I think I can really tell when extreme fatigue takes over due to FMS. _ What do you do to relieve your FMS symptoms, especially for chronic fatigue? I’m suffering quite badly with this today and finding it hard to move my arms and legs because of the stiffness and how weak I feel. It’s hard to explain, but it almost feels like my body has been drained of all it’s blood and nothing is being pumped around my body. My muscles and bones feel weak and stiff and leading to tension headaches. _ Purple @awarecauses necklaces also raise awareness for Fibromyalgia/FMS. Get 10% off any jewellery with my promo code: iamsarahmac 10% of proceeds go to a charity related to the cause you have bought a necklace for. 💜 _ Hope you are all okay and feeling much better than I am today! S. X _ #awarecauses #fibromyalgia #fms #chronicfatigue #invisibleillness #endometriosis #lupus #autoimmune #antiphospholipidsyndrome #dailygirlsfeed #pursuepretty #petitejoys #chronicillness #butyoudontlooksick #promocode #influencermarketing #spoonielife #iamthankful #liveunscripted #chronicloveclub #londonliving #followthejourney #missselfie #flashesofdelight #idaily #endosister #nottheendome at London, United Kingdom

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@cherimicheleblog

I tend to fear that I’ll be this sick forever and worry that the doctors will never figure out everything that’s going on. When I start to get really stressed the Lord reminds me that it’s because I’m rushing things, and it will happen in His perfect timing. In the meantime I should focus on finding the purpose in the pain: what can I learn about myself through this; who can I help; who can I witness to, who can I pray for. #stressless #healingwillcome #itwillhappeninhistiming #chronicillness #chronicillnesswarrior #antiphospholipidsyndrome #APS #posturalorthostatictachycardiasyndrome #POTS #celiacdisease #chronicgastritis #diverticulosis #chronicmigraine #scoliosis #endometriosis #ovariancyst

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@judebw

This season's migraine ice lolly of choice - the humble Rocket Lolly! Tesco better stock these by the thousands if last year is anything to go by. #migraine #aps #antiphospholipidsyndrome #Antiphospholipid #nausea #hydration

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@hera_nst_nanosprayasli

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. Ikhtiar dng Bioglass utk penyembuhan yg alami MCI punya solusi👌 Sharing is Caring ❤ 0812 6353 930 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

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@indrawatimeganingsih

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. Ikhtiar dng Bioglass utk penyembuhan yg alami MCI punya solusi👌 Sharing is Caring ❤ Indrawati Wa : 0816527071 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

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@surrogacyjourney_miami

I’m excited to announce... we will move forward with my egg retrieval. My eggs are 💯! Now it’s a matter of preparing my body for the big retrieval day. With Gods help and LOVE it will all be possible. I’m thankful for my community of girl supporters. It makes such a difference when you don’t feel alone. Thanks to all of you for reaching out to me with encouraging words and beautiful success stories. #miamisurrogacy #mthfr #mthfrawareness #antiphospholipidsyndrome #babyontheway

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@rainbow_inadarksky

Deep in my heart I was always so worried that my best friend would get pregnant before me and I would be jealous or that it would work for me and when her time came, it wouldn't for her. Something silly that always stayed in the back of my mind. But I'm super thankful and excited that were going through this together and our babies will be a few months apart! 💖 I now realize that even if it had worked for her but not for me, I would have been just as happy for her as I am now. Because she deserves happiness and deserves to be a mother. She has been such a constant strength in my life & I love her like a sister. If you're in a position where you're still struggling & someone close to you is not... As hard as it can be to accept, it's perfectly okay for you to be thrilled for someone else while you're grieving for yourself. 💖 #est2001 #est2019 #bestfriends #bff #babytime #thankful #grateful #pregnancyafterinfertility #ivf #webeatinfertility #pcos #antiphospholipidsyndrome #infertilityawareness

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@iamsarahmac

💛 And it was all yellow... _ This week is going WAY too slowly and I’m waiting on a doctors appointment for Thursday to get my meds and get back on track. I’m all matchy-matchy today with everything! _ Also wearing my yellow @awarecauses necklace to raise awareness for endometriosis. 🌻 Get 10% off ANY Aware Causes jewellery with my promo code: iamsarahmac Let’s start a conversation with Aware! S. X _ #yellow #endometriosisawareness #promocode #awarecauses #endosister #invisibleillness #medication #anditwasallyellow #iamsarahmac #influencermarketing #selfhealing #autoimmune #endometriosis #fibromyalgia #chronicloveclub #lupus #butyoudontlooksick #dailygirlsfeed #antiphospholipidsyndrome #iamthankful #idaily #petitejoys #londonliving #spoonielife #pursuepretty #flashesofdelight #walklikeus #missselfie #nottheendome at London, United Kingdom

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@creatingbabyranberg

Well, it’s been confirmed. Now to actually attempt to get pregnant. Still waiting on appointment for the high risk pregnancy unit at a specialist hospital. 😔 #ttc #ttccommunity #ttcjourney #ttcaftermiscarriage #rainbowbaby #fertilityjourney #aps #antiphospholipidsyndrome #tryingtogetpregnant #tryingtoconceive #creatingbabyranberg

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@iamsarahmac

🥣 No gluten. No dairy. _ @pretamangeruk always has nice soups that are gluten and dairy free! Served with a @scharglutenfreeuk gluten free ciabatta roll. 😋 Also got a ginger and apple shot to see if it would help my nausea. Does ginger help you? S. X _ #pretamanger @thepukket #desklunch #glutenfree #dairyfree #gingershot #nausea #selfhealing #endometriosis #lupus #antiphospholipidsyndrome #fibromyalgia #autoimmune #eatguide #myendonutrition #dailygirlsfeed #spoonielife #invisibleillness #iamthankful #igaddict #londonliving #petitejoys #liveunscripted #chronicloveclub #endofriendly #endosister #idaily #butyoudontlooksick #nottheendome at Putney

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@chronicallyshan

Work Shannon vs At Home Shannon I love sweatpants. Like I really love them. The first thing I do when I get home is change into them. Clearly wearing sweatpants to work isn’t an option so I settle for jeans and usually a cute top&sweater. As long as I’m not at work you can find me dressed like a bum because it’s the most comfortable for me. Although I love my relaxing clothes it is nice to have a reason to wear nicer clothes throughout the week (and a reason to wear a bra) 😉 Also, to piggy back off my second to last post about saying no: I have not been doing well guys. I am so overbooked and overwhelmed and stressed lately and it is so so not good for me. This week is going to suck with the amount of commitments I have but next week I’m traveling to Colorado and am very much looking forward to having good times with my family :) Will I ever learn to say no? Or will my health just gradually decline until I have no other choice. Stay tuned y’all ✌🏻😬 #Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness at Los Angeles, California

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@thechronicblogger

Over all had a very shit appointment with my two dieticians today. As I’ve not been using my tube as much for feeds, as my gastro doc so bloody wished, I’ve ended up losing more weight and basically not even eating. One of my dieticians some how felt appropriate to tell me how dangerous it is, I’m at risk of more hospitalisation with refeeding syndrome and it will cause more complications with hypo management with my diabetes. As much as I appreciate her honesty, it’s difficult from my perspective to maintain an oral diet that’s adequate with human life when I’m constantly sick. I have never ever felt more quizzed in my life in terms of Libre readings/bolusing etc and I came out of the appointment feeling more shit about myself than I did before I went in. Considering I have to have 6 weekly check-ins and weigh-ins, I am so reluctant to not bother with the next appointment if it’s going to be the same as this. It’s really hard to pick yourself up after a shitty appointment. #diabetes #autoimmunedisease #antiphospholipidsyndrome #factorvleiden #typeonestrong #type1diabetes #chronicallyill #chronicillness

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@judebw

My head hurts. Like the last time. . . . #antiphospholipidsyndrome #Antiphospholipid #aps #migraine #neuralgia #chronicpain

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@iamsarahmac

👩🏽 When you feel like death so you can’t be bothered to put your face on... _ Today my chronic illnesses took over and made me feel nauseous and in pain for the entire day. I’m always in pain, but I can handle it for the most part, it’s the nausea I can’t take. I feel like I can’t do anything when I feel like I might throw up every minute. _ Have you tried any natural remedies for nausea and sickness? Let me know what works for you, I’d love to try them out. Struggling at the moment as I’m meant to be weaning off some of my medication but can really feel a difference and it’s not a good one. 😔 _ Saying that, I did have my first client meeting today since returning to work which I’m super happy about. I have become very good at faking being okay. 😄 What are you proud of today? S. X _ #costacoffee @thepukket #makeupfree #missselfie #freshface #nausea #sickness #naturalremedies #selfhealing #pursuepretty #endometriosis #lupus #fibromyalgia #antiphospholipidsyndrome #londonliving #dailygirlsfeed #bestoftheday #petitejoys #chronicloveclub #liveunscripted #walklikeus #coffee #invisibleillness #autoimmune #spoonielife #iamthankful #nottheendome at Putney

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@elena_luvs

this is my #flairnotflare story 💜💙 diagnosed with #antiphospholipidsyndrome at 15 years old. at 18 years old went into a coma and had heart failure and liver was shutting down and kidneys too. was diagnosed with #SLE and #descoid and #fibromyalgia 💜 at 21 I went into labor with my triplets because my heart started to fail and so did my lungs. I lost my little daughters at 22 weeks. I was diagnosed with #pulmonaryhypertension 💙 when people hear that I have these illnesses the first thing they say #youdontlooksick and that is true. I try to carry myself high. My life has been saved more than I can count on both hands. I have amazing doctors who learn about these diseases from me. I haven't had a bad flare up in a year. I hope and pray that keeps on adding to my days. It's the worst pain I've ever felt besides losing a child. I've been raped, beat, stabbed, shot, gave birth and even died twice. But the pain that is caused by these diseases cant be controlled sometimes no matter what I try. My disease also learns to evolve somehow. I remind everyone to be thankful for their health and blessings. Some aren't as fortunate. I dont want to look sick. I want to look like a warrior and a survivor among my fellow warriors and survivors 💜💙❤ keep pushing forward because I know there will be a cure one day. Maybe not for me but for everyone.

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@relawanlupus

APS (antiphospholipid syndrome) adalah tipe autoimun sistemik yang terkait dengan trombosis vaskular dan serial keguguran berulang. APS dapat berdiri sendiri atau terkomplikasi dengan Lupus dan seringkali menjadi phobia tersendiri bagi Odapus wanita yang ingin merencanakan kehamilan. Tapi jangan takut: dengan kondisi terkontrol Odapus dengan APS dapat merencanakan kehamilan dengan baik koq. Yuk simak infografik tentang APS berikut ini. #lupus #relawanlupus #lupuseritematosus #SLE #LUPUSindonesia #yayasanlupus #indonesia #exploreindonesia #dokterindonesia #pasienlupus #lupusfacts #autoimmunefacts #aps #antiphospholipidsyndrome #infografik #followforlike #likeforfollow #followforfollow #like4like #like4follow #follow4like

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@chronicallyshan

Just wanted to take a second to give a shout out to my parents. I am extremely lucky to have parents that have supported me wholeheartedly in my journey with chronic illness. When I made the decision to move back home my parents dropped everything to move me and all my stuff back from Cal Poly. They’ve sat with me on the bathroom floor, taken me to doctor appointments, stayed with me in the hospital, gone out of their way to get me anything/everything I could need. They’ve advocated for me, paid my medical bills, and have stood by my side even when every doctor I saw questioned me. Life with chronic illness isn’t easy and my parents strive to make everyday easier, especially the bad days. I realize how incredibly fortunate I am to have lucked out with these 2 and realize so many people in this community don’t have the same situation as I do which breaks my heart. For anyone out there who doesn’t have the best family life and is trying to manage chronic illness: you are worthy and loved and deserving of support. #Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness at Los Angeles, California

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@thechronicblogger

Feeling better (minus the flareup making my postural tachycardia even worse). It’s funny how when I have to give my diagnoses when I’m admitted- everyone’s always curious about my postural blood pressure issues. This then results in me having to explain and show them with a BP cuff. So when I stand up I have a higher BP (around 140-170/80-100). When I lay down my blood pressure drops to between 80/90-40/50. This is actually so dangerous for me. I have very little hypo awareness in the day but at night it’s even worse as I won’t wake up at all. I will literally be unconscious for 4-5 hours and hypo continuously. Also doesn’t help when you have postural tachycardia too🤓. #diabetes #typeonestrong #gastroparesis #freestylelibre #type1diabetes #autoimmunedisease #autoimmune #gp #clottingdisorder #factorvleiden #APS #antiphospholipidsyndrome

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@sickchickandpoppy

Morning campers! I've had a settled night chez l'hopital but woke up this morning at 6am wracked with muscle spasms. So Ive been given some diazepam and methocarbamol and things are settling down now. The consultants dont work over the weekend so its nursing care only (who do an amazing job, god bless our wonderful NHS) til Monday. The gastro team are coming to see me again tommorow along with endocrinology so lets hope I can get home to care for my Mum asap once Im in the system and things are in place. Im still sleeping a hell of a lot and feeling pretty grotty but the intavenous anti-emetic is better than any other Ive tried before. Ive started on ad-cal for my lack of calcium and folic acid, plus the potassium drip and a magnesium supplement. So little by little my lost things from all the vomiting and weight loss are being replaced. Ive put on 2lb since being in here for a week! Hurrah!! It sounds daft but i really miss Poppy and shes fretting for me mum says. And obviously I really miss my Mum even though one of my siblings have brought her in every day to visit. I just want to get home to her. Hopefully tommorow will be the day Ill be well enough to get there. Fingers crossed! In the meantime Im having a lovely much needed rest and catching up on my reading.💪🐱 Thank you once again,to all who have actually taken the time to send messages of encouragement, love and support since Ive been in hospital. You know who you are, and It certainly has not gone unnoticed. Its surprising those who do take the time to send lovely texts, messages and offers of visits and those who dont. It gets very lonely in hospital and you have a lot of time to dwell on these things and it certainly wont be forgotten. 💕 Im keeping positive and just focusing all my efforts on getting well and getting home to look after my mum again. I hope youre all ok and are feeling as well as possible lots of love and spoons as always Jo xx #hospitalstay #lowpotassium #grateful #positivityeveryday #inspirationalpage #positivevibesonly #chronicallyfabulous #disabledandcute #positivevibesonly #lupuslooksgoodonme #kidneydiseaseawareness

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@pghsupporter

Last chance to get the few remaining tickets to this informative event happening this week. #hughessyndrome #lupus #sjogrenssyndrome #antiphospholipidsyndrome Tickets available through eventbrite.co.uk for a fiver!

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@stilllifewithblaine

Showing off his pretty eyes on our dinner date at @gratemac

3
@whole30.husband.and.wife

#decluttering everything! There's nothing like deciding to move one day and then starting to move the next day. We've already taken a lot of kitchen stuff to our other house. And, thank you Jesus, we've already had quite a few inquiries into renting the house we're #moving out of. 🙏🏻☝🏻 Our goal is to be completely moved in 3-4 weeks so we can take a few weeks to repaint and fix the house up. # #whole30husbandandwife #whole30 #whole30alumni #myfoodfeedom #cleaneating #healthychoices #jerf #paleo #healthyfat #junkfree #sugarfree #glutenfree #grainfree #cornfree #soyfree #dairyfree #autoimmune #lupus #sle #lupuswarrior #curelupus #psoriasis #sjogrens #antiphospholipidsyndrome

4
@sickchickandpoppy

Hospital selfie! Not feeling the best today. My potassium is still low after many bags of it, now my calcium and magnesium are also low. Ive been having pretty awful muscle spasms so been prescribed diazepam for that and some good anti emetic for my vomiting which goes into my drip. So Ill he here for a few days yet. Just sleeping and resting as much as possible today. Ive got a pretty demanding patient opposite me and listening to her moaning and whingeing about absolutely everything is bloody exhausting, Ive been running to get the nurse for her every five minutes l, helping her with her complaining, listening to her moans,but today Im feeling really awful, in lots of pain, and Im just really not well enough today, so its earphones in and Im afraid someone else can respond to her moaning today. I have no time for negativity! Im trying to get better please leave me be! Sorry if that sounds unfeeling I am really really not but when its constant negativity its bloody draining! Hope you're all having a good day and are feeling as well as possible lots of love and spoons as always Jo xxx #hospitalstay #notimefornegativity #hospitallife #poorlyday #positivityeveryday #positivity #thinkpositive #behappy #bebrave #inspiration #motivation #sickchickandpoppy #inspirationalpage #positivevibesonly #spoonieblogger #chronicallyfabulous #sickchickandpoppy #inspirationalpage #positivevibesonly #spoonieblogger #chronicallyfabulous #disabledandcute #lupuslooksgoodonme #antiphospholipidsyndrome #fibromyalgia #endometriosis #butyoudontlooksick #invisibleillnessawareness

10
@saraandshay

A year ago I returned back to college after a full year on medical leave. Before the first day back, I felt crippling academic, social, and situational anxiety - Due to brain fog and POTS, I was no longer capable of processing information as I had previously; I knew I would have to undertake the daunting task of developing new studying tools. I feared being lonely, as I had lost friends being absent from school and because so many others had graduated. Lastly, I worried about the safety of living on my own. I knew this would be a huge challenge, and as classes began it was even more difficult than I had imagined. I felt profound sadness as I walked through the halls and pictured myself hanging posters for the different clubs I was apart of, and sadly knew I would not have the energy to re-join. I’d have flashbacks of giving tours to prospective students, one of my favorite extracurricular activities. I was stuck clinging onto memories of the past. Wishing I could re-create them. I couldn’t escape the expectations of my former self. It was all too much. It felt impossible. But as time progressed and Shayna and I settled into our apartment, things started to change. I’d wake up in the morning to Shayna jumping in bed with me, kissing my face, letting me know that it was time to go outside. It was if she was saying “there’s no time to be sad, the world is awesome!” and for the first time some of the anxiety dissipated. I’d walk with her each morning and I started meeting people, some from my apartment, other dog lovers, and students from campus. Shayna became a tool for me to socialize and exercise. When I felt overwhelmed in class, my mind would momentarily drift and I’d plan my day with her in my head. It made me feel in control, comfortable, and safe knowing I had her waiting for me at home.. She made me feel in control, comfortable, and safe. Her unconditional love gave me the strength to take these tough challenges head on, and this is why I owe so much of my success, my health, and my ability to graduate summa cum laude, to this girl. To everyone else she’s just another dog on Instagram, but to me she’s a lifeline 💕🐾

12
@whole30.husband.and.wife

So today was day 13 of the #minsgame #declutter challenge, but I couldn't just put half these Christmas earrings in the declutter pile so I got rid of 28 pieces of Christmas jewelry. # It looks like the three of us will be moving to our smaller place soon. From 950 sqft to 587 sqft. #downsizing #declutteringwithbudgetingmommy # #septemberwhole30 #whole30husbandandwife #whole30 #whole30alumni #myfoodfeedom #cleaneating #healthychoices #jerf #paleo #healthyfat #junkfree #sugarfree #glutenfree #grainfree #cornfree #soyfree #dairyfree #autoimmune #lupus #sle #lupuswarrior #curelupus #psoriasis #sjogrens #antiphospholipidsyndrome

14
@chronicallyshan

You know what I’m ridiculously bad at? Saying no. I feel this compulsive need to say yes to everyone all the time. Even when it’s not in the best interest for my health. I spread myself thin saying yes to people. And it’s SUCH a bad habit. I think being able to say no is healthy, and it’s something I really want to try to get better at. A big reason I tend to never say no is that I don’t want to disappoint people or let anyone down. I want to be everything for everyone, even though that’s wildly unrealistic and constantly saying yes is exhausting. I’m exhausted you guys. I need to start putting my health first more often instead of over doing it and then feeling like I got hit by a bus. I need to stop acting like I have perfect health and accept that I do have chronic health issues that mean sometimes I need to take it easy. Looking at the picture of myself all I can see is how freaking tired my eyes look, and that’s not okay. So I’m posting this here as a public promise that I’m going to try and start saying no more 😬 do you guys have issues with never saying no too?? Let me know ☺️ #Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness at Los Angeles, California

17
@mci_healthyshop

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. More info: David_mci Hp/WA : 085100706986 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat #mci

0
@jenny_notfromtheblock

Single [weeks] digits until we meet this baby girl! We're hoping to keep her cooking for at least another 5 weeks before she joins us! 💖 #31weekspregnant #31weeks #3rdtrimester #8months #babyaleina #bumpinalong #bumpday #pregnancyafterinfertility #pregnancyafterloss #pregnancyafterwls #lupus #antiphospholipidsyndrome #rainbowbaby #miracle

2
@ournaturaltruth

I was supposed to be 12 weeks but my little one stopped growing at 9 weeks. This was my third miscarriage, first missed miscarriage. #endometriosis #endo #endowarrior #miscarriage #keeptrying #somuchforthat #struggle #notearslefttocry #somedayiwillbeamom #antiphospholipidsyndrome #tellmewhatsgoingon #missedmiscarriage #doctorsdonthelp

0
@nicolemouneu

¿Tienes abortos recurrentes? ¿Tienes problemas para embarazarte, a pesar de ser sana? ¿No sabes qué está pasando? Puede ser síndrome de anticuerpos antifosfolípidos, una enfermedad autoinmune, que se caracteriza por abortos recurrentes, y trombosis. ¡ Hay solución, busca ayuda ! El diagnóstico oportuno puede hacer la diferencia. Si tienes esta enfermedad, debe de ser manejado por un equipo multidisciplinario, compuesto por un reumatólogo, un ginecólogo, y un neonatólogo. No dejes pasar más tiempo, y busca ayuda. #reumatologia #reuma #aborto #abortion #rheumatology #aps #antiphospholipidsyndrome #sindromeantifosfolipido #abortorecurrente #trombosis #gethelp #embarazo

0
@ciacia_tania

PUNYA PERMASALAHAN DARAH KENTAL? . . Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. . . MCI punya solusi👌 . . More info silahkan hubungi . Chat me : 082365182242 Sally tania . . #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat #sehatsekeluarga #sehatalami #healthnews #healthproduct #international #instadaily

0
@devinaatania_02

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi . Chat me : Line/Wa : 0895601873960 . #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@maysa_861

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. Ikhtiar dng Bioglass utk penyembuhan yg alami MCI punya solusi👌 Sharing is Caring ❤ #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat More info DM

0
@lilys.2005

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi 👇👇👇 Wa : 089651191627 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@vonny_sulistiowati

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi . Vonny . #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@kirsty_carr

APS Support UK helping to raise awareness so that more people are diagnosed before it’s too late and we can hopefully bring the average time before diagnosis down. It took me about 6 years to be diagnosed and I’m lucky that it was before I became one of the first statistics #antiphospholipidsyndrome #apsawareness #autoimmunedisease #chronicillness #strokeawareness

0
@nonie_tjioe

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi . Chat me : Nonie 081376330085 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@mcihealthsolutions_lina

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi . Lina MCI 0852-2276-9071 #darting # #darahkental # #bioglass # . #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@whole30.husband.and.wife

Day 12 of #minsgame, I'm continuing to #declutter my large jewelry box. I think this #decluttering is a God send, it seems we're going to be moving into our small rental (where my mom lived) and end up renting the house we're living in. 🙏🏻 #declutteringwithbudgetingmommy # #septemberwhole30 #whole30husbandandwife #whole30 #whole30alumni #myfoodfeedom #cleaneating #healthychoices #jerf #paleo #healthyfat #junkfree #sugarfree #glutenfree #grainfree #cornfree #soyfree #dairyfree #autoimmune #lupus #sle #lupuswarrior #curelupus #psoriasis #sjogrens #antiphospholipidsyndrome

1
@vennyliauw_

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi . Chat me : WA 0822 7707 8817 Venny #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@melwil1809

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi Meliani Wa. 087868983032 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@mellyleung_me

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi 👇👇👇 MElly Leung 081320636587 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@cisca_hoki_miss_nano

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. Ikhtiar dng Bioglass utk penyembuhan yg alami MCI punya solusi👌 Sharing is Caring ❤ CiscaHokiMCI WA 081-13371984 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@asunblest

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info silahkan hubungi 👇👇👇 Asun 08129714397 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
@jo_sevchenko

PUNYA PERMASALAHAN DARAH KENTAL? Darah Kental (juga dikenal sebagai hiperkoagulabilitas, antiphospholipids atau Hughes Syndrome) adalah suatu kondisi di mana darah seseorang lebih kental (tebal dan lengket) daripada darah normal. MCI punya solusi👌 More info & order silahkan hubungi 👇👇👇 Yonatan Andri WA 082121975085 😊 #pengentalandarah #darahkental #hiperkoagulabilitas #antiphospholipidsyndrome #hughessyndrome #sehat #bioglass #sehattanpaobat

0
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