Antiphospholipidsyndrome Photos on Instagram

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@waiting_to_be_mum_of_two

#siblingsgoals #tigercubs #lego I’ve always imagined having multiple children, not a specific number just not one... I know she would love a sibling to play with, grow with, look after... #siblingshurttoo #waitingtobemumoftwo #waitingtobeabigsister #miscarriage #babyloss #stickybloodsyndrome #antiphospholipidsyndrome #fingerscrossed #alwayshopingwishingpraying

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@karenm320

Joe is in the hospital 🏥 again for another stroke, a result of his Antiphospholipid Antibody Syndrome (APS). The doctors are not able to handle this rare condition, and so this is his third stroke. Hey, maybe try a stronger blood thinner now? Ya think? This pic is him after 12 hour in Christiana Hospital 🏥 ER. #antiphospholipidantibodysyndrome #antiphospholipidsyndrome #aps #strokesurvivor #bloodclot #bloodclottingdisorder #hospitalssuck #emergencyroomssuck at Christiana Hospital

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@waiting_to_be_mum_of_two

#butterfly I love the #butterflyhouse In my head - these are not angel baby butterflies - my babies are little white ones that live on the field by our house But seeing these beautiful delicate animals just makes me feel happier #miscarroage #babyloss #angelbabies #stickybloodsyndrome #antiphospholipidsyndrome #waitingtobemumoftwo #grievingmummy

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@justlikemardigra

Tha look tho lol "Ya know you don fuk'd up right"... lmao at Amberjax Fish Market Grille at Trinity Groves

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@queenbtrfly_

A little yoga swing therapy! This is really helping me with opening my 💓!! It has been easy for me to get a little more active because it isn't bearing weight on my body so hard. I really have issues with my knees, and now my hip joint is beginning to bother me so being able to slowly stretch at my speed is wonderful! When I was diagnosed with an autoimmune disorder almost ten years ago, I had no idea what that really meant. I mean, I could research all day but those words can't explain what the body and mind go through as a whole. Doctor's always seem to be confused by symptoms, and that makes you not fit neatly in their little box which means bye, see ya. That's not a plan of action for the degeneration of my body! I knew I would eventually find my groove again, life just cycles so fast around you and by you that it's hard to catch an emotional breath sometimes. ..🤦🤷😬 But.... That's ok, I'm gonna do my "thang" and find what works best! I love homeopathic and natural remedies, like herbs and all kinds of plants. I've always love my plants! Besides my kids, the next thing people better not mess with is my garden 😂😂😮🎍🌿🌽 🌷🍅 It has always brought me a joy that's hard to define. It doesn't surprise me though, the cycle of plants and our cycle of life are similar to me. There is such a beauty in the new growth, and the beauty of it going through seasons until it becomes part of the whole soil to prepare for the next one. My heart has been needing to journal a lot lately so I suppose this is where it ends up some days. . . . #yoga #yogaswing #sacredspace #heartopener #heartchakra #release #love #yogagirl #yogaswings #igyogafam #imayogamom #doyouyoga #namaste #backbends #yogawheel #yogini

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@karinnemcconnell

⚠️ WARNING ⚠️ LONG POST.. Did you all see my live video a few nights ago? If you didn't, I was talking a little about my struggle with pregnancy and my autoimmune disorder called APS. ∙ This is what my belly looked like after all those shots. And actually, this was not even as bad as it got. I had to inject an anticoagulant called Lovenox from the moment we found out I was pregnant until 6 weeks after I gave birth. YUCK. It was not fun at all. ∙ For some reason I just could not inject myself even though I was a medical assistant and gave shots, drew blood, you name it. So my poor husband had to learn how to do it and be a good sport when I screamed at him through all the tears, blaming him for it hurting so much. ∙ This is actually the only picture I ever took of my bare belly during both pregnancies. I was so upset that I would never have any cute maternity pictures with the belly showing through. I was embarrassed. Now that I think about it, I shouldn't have been embarrassed or ashamed. I should have owned it. But that's not what happened. Things like this and misscarriage aren't really talked about. But how amazing would it be if we did talk about it and supported each other through those hard times? ∙ I felt alone most of my pregnancies, especially my first one, because I didn't want anyone feeling like I wanted or needed their pity. Looking back, I wish I had been more open. I wish I did reach out and talk about my journey and maybe even help someone else going through something similar. That's why I am now taking a leap of faith and doing it now. You never know who needs to know that they aren't alone. So going forward, I will be showing you little glimpses into our amazing, but sometimes really shitty, journey ❤︎

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@thehapahaole

Only pic I took with my phone last night before heading out!! Losing weight and feeling great!! Despite my health issues.. I smile though the storms, because I'm blessed to keep seeing the rainbows!! #Medicate #Educate #AZMMJ #TheErrlCup #mymedicine #allherbal #allnatural #Ckdstage3 #MCTD #Lupus #sjogrenssyndrome #antiphospholipidsyndrome #aiwarrior #chronicpain #spoonie #IYMD #healing #DreamBig #workhard #Playhard #pakololo #Free420photos #photography #PuffPuffphotos #Faith #Iwillnotbedefeated

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@the_nurse_chronicals

“We are like a snowflake, all different in our own beautiful way “ ••••• Many times we don’t see ourselves as “beautiful” or “desirable” because our illness(s) cause changes within our bodies, some invisible, some not so much. I know when I had to get used to seeing myself with a port and a gj tube, I never thought I’d be attractive to anyone ever again. Between all of my growing illnesses and implanted devices, although life saving, they brought my self esteem to a near nonexistent point. But my thoughts of worthlessness couldn’t have been farther from the truth. I AM desirable, I AM beautiful, I AM lovable... Snowflakes, each one that falls on this earth are different, unique and beautiful in their own way, just as each of us are. Some people may not love snow, but winter still comes no matter what, it is part of this earth, it’s here to stay, it cannot please everyone, but there will always be those who love the season. Equally, not everyone we meet will love who we are, but we are not meant to please everyone, and those who love us will always be around and find us perfect in our own way. •••• So, continue to be like a snowflake, different from everyone else, yet beautiful in its own unique way. . . . #snowflake #snowflakes #snow #winter #beunique #beautiful #chronicillness #findbeautyineverything #invisibleillness #ehlersdanlossyndrome #ehlersdanlos #rheumatoidarthritis #rheumatoiddisease #antiphospholipidsyndrome #nutcrackersyndrome #sjogrenssyndrome #dysautonomia #gastroparesis #gjtube #tubie #zebra #autoimmunedisease #mcas #mastcellactivationsyndrome #butyoudontlooksick #youareloved

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@chronicallyshan

Guys!! Today I went golfing!! After going to a concert the night before!! Like who is this because I don’t know her 😏😎😩🔥 But seriously, even though I still have a fair amount of bad days I am so much better than when I started. I was bed bound, about to pass out every time I stood up, nauseated all the time, depressed because I missed my old life; I was miserable. I really just want to give a shout out to amazing doctors, finding the right medications, and finding s routine that works for MY body. It takes A LONG TIME but man it’s just freaking amazing the life I have now compared to where I was spring 2017. For me personally I’ve also figured out that I do worse in late fall and early winter health wise for whatever reason aka I’m finally coming out the other end from the hell that was fall and winter 🤷🏼‍♀️ Don’t lose hope guys. Take breaks, fall down, cry, but get the eff back up 👏🏻 It’s not a fun process and I’ve fallen more times than I can count but it’s worth it ✌🏻

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@justlikemardigra

Chucky was right! Cheers!!! #rasberryromancemartini spectacular adult cocktail libation. at Amberjax Fish Market Grille at Trinity Groves

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@justlikemardigra

Date night is lit af! The food is excellent, the service is top level and my company ❤❤❤ is the best ever! Thanks babes! at Amberjax Fish Market Grille at Trinity Groves

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@strength_in_struggles

(I'm craving some alcohol so badly. It's been almost a year since I've drank, and I got drunk off a half glass of Merlot then. Send help. 😂) I forgot to update on my neurologist appointment. He did not agree that Gabapentin is the best choice for me. He said that it is the weakest medication out there when it comes to seizures, and it doesn't have that high of success when it comes to helping migraines. Instead, he put me on Zonisamide. He said it's similar to Topamax in how it works/helps, but it has different ingredients, which is good, being I am allergic to Topamax. I took my first dose last night. No side effects...yet. If anyone has been on Zonisamide, I would love honest feedback. My neurologist also wants me to do another inpatient stay in a Epilepsy Monitoring Unit, in the spring. He wants to make sure I'm on the correct treatment for my type(s) of epilepsy, and to get a specialist's opinion on what else can be done. I was in University of Michigan's EMU for 3 or 4 days, in 2017, and it was a horrible experience. I will be at a different hospital this time. Hopefully I have a better stay there. #chronicillness #invisbleillness #dysautonomia #neurocardiogenicsyncope #posturalorthostatictachycardiasyndrome #POTS #EhlersDanlosSyndrome #medicalzebra #hemiplegicmigraines #gastroparesis #chronicpain #intractablemigraine #superventriculartachycardia #epilepsy #postconcussionsyndrome #antiphospholipidsyndrome #lupus #toomanyillnessestohashtag #neurologist #neurology #epilepsymonitoringunit #ineedadrink #chronicillnesshumor

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@ttc_rainbowbabyb

AND so the 2ww begins, again. I'm headed home to my parents house for 5 days to ease me in, as haven't been back since Christmas. Looking forward to walks by the sea, yoga, long sleeps, baths (lukewarm, fear not), self care and books. I'm excited to read this one, as I've heard great things. I'm feeling better than ever going into this one as we literally did everything we could. I think sometimes what stresses me out is knowing we probably didn't DTD enough. But D has been totally on board this cycle, and we are in a great place. Have asked my mum to buy me a whole pineapple which I'm going to start on tomorrow. She knows the ins and out of our journey and is a great support system. Please be our lucky month!! 🏖📚🧘‍♀️ • #ttc #ttcjourney #ttccommunity #ttcnumber1 #ttcnumberone #babydust #miscarriage #miscarriages #recurrentmiscarriage #babyloss #APS #antiphospholipidsyndrome #hypothyroid #hypothyroidism #ttcsisters #ttcaftermiscarriage #ttcsupport #baby #pregnancy #positivity #girl #fertility #infertility #ihadamiscarriage #ttcafterloss #marriage #couple #love #CD13 #femalecycle

4
@whole30.husband.and.wife

Happy Valentine's Day! 💖 Love your people, not just on this day but every day. Life is very short, I miss my mom every day, so take every opportunity to love the people God has given you. Since I started dying my hair again, I see my mom in me a lot. That's what I'm talking about in the video. # #whole30husbandandwife #whole30 #whole30alumni #myfoodfeedom #cleaneating #healthychoices #jerf #paleo #healthyfat #junkfree #sugarfree #glutenfree #grainfree #cornfree #soyfree #dairyfree #autoimmune #lupus #sle #lupuswarrior #curelupus #psoriasis #sjogrens #antiphospholipidsyndrome

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@charitymbogho

Daily battle of turning lemons to mojitos.. Always winning.. Happy Valentine's fam . . #ChildOfGod#AutismMum💙 #AutismAdvocate #HeartAttackSurvivor #StrokeSurvivor #PulmonaryEmbolismSurvivor💙 #AntiphospholipidSyndrome #miraclesandmesses #Survivor

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@chronicallyillchristian

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails - 1 Cor 13:4-8a ❤️ . . . #valentines #loveis #1corinthians13 #chronicillness #chronicillnesswarrior #Fibromyalgia #Lupus #antiphospholipidsyndrome #APS #posturalorthostatictachycardiasyndrome #POTS #celiacdisease #chronicmigraine #scoliosis #chronicpain #chronicpainwarrior #spoonie #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #sicklife #disabled #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability

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@justlikemardigra

Ooooo Chile I needed to stop a minute and just think how grateful I am that yesterday was pain free and that something to commemorate you hear me! at Dallas, Texas

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@petrichorgalaxy

Tuna Salad😱😋

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@waiting_to_be_mum_of_two

This programme has had me in tears tonight. Watching an episode from a few weeks ago, about a mum who didn’t talk about her baby boy dying at months. Doctors told her it’s best not to Why even now do we not tell people before 12weeks? I keep hearing people say “just in case you know!?” Well do you know what? I’ve been in that situation where the unthinkable happens and I’ve tried not talking about it, pretending #imok but I’m not and it’s not If we have a tiny slot of time with them then share that with people you love, because if they are taken from you, then there will be people to help you up again, cuddle you tight when you feel like your world has fallen apart. My advice to anyone is don’t pretend you’re ok, be honest about how you feel, because holding it all in and masking over it feels a hell of a lot worse. It’s a very lonely place when people around you think you’re ok because you’ve told them you are.... but inside i am screaming for that cuddle, screaming for someone to realise that I’m not ok @call_the_midwife @bbc thank you for making such an honest programme 💖 #miscarriage #babyloss #waitingtobemumoftwo #antiphospholipidsyndrome #stickybloodsyndrome #loneliness #counsellingtalkaboutit @mindcharity

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@_pepperorange

My second blog post is now up, where I talk about my diagnoses of #PCOS, #Lupus and #Antiphospholipidsyndrome, and my journey to start #adopting Link in bio 🧡 • • • • • • • #adoption #ukadoption #adoptionblog #adoptionblogger #adoptionjourney #adoptionprocess #blog #blogger #adoptionuk #pepperorange #APS #SLE #polycysticovariansyndrome

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@angela.ravenred

And just like that it’s back to real life. I’ll be spending all day at the hospital having a whole battery of tests done. Because being chronically ill is a way of life. • • • • • #chronicillness #sixmonthfollowup #cteph #pulmonaryhypertension #antiphospholipidsyndrome #backtoreality #andiwait #storyofmylife

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@justlikemardigra

Do you still use #snapchat I'm being serious. Because I realize that I haven't in idk how like until I needed a new #bitmoji smh #1stworldproblems if yes support me lol so I can get my snap groove back. at Dallas, Texas

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@waiting_to_be_mum_of_two

#stickyblood #antiphospholipidsyndrome #nhs #stickybloodsyndrome Why isn’t it something tested as standard? How many of us have to go through three heartbreaking miscarriages to find out we have it? Why do blood tests in some places get carried out 6 weeks apart and others 12 weeks apart? I’m feeling so let down by our NHS for not testing me after we lost our daughter at 20weeks (which apparently should have been done!) so instead I’ve had two more pregnancies end in miscarriage, a gynaecologist dismiss me because I have a healthy daughter (30% chance of sticky blood not affecting your pregnancy, and she was that lucky 30%) and now 2 years on being told I have to wait till July to try to conceive because that’s the soonest appointment... #ivealreadywaitedtoolong #waitingtobemumoftwo #miscarriage #babyloss #itsnotfair #womensbiologicalclock #clocksticking @tommys_thebabycharity @miscarriageassociation @sandscharity Www.aps-support.org.uk

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@justlikemardigra

Happy 5th Work Anniversary! at West Virginia Park

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@ttc_rainbowbabyb

Trying to do this at the moment. Less temping, less tracking and more living. I hate the 'relax and it will happen' phrase. Once you want a baby, you can't just stop wondering if you've managed to beat the odds that month. It's always in the back of your mind. But what I have been trying to do is think about ME and US more. I heard on a podcast last week: 'don't forget about project you in pursuit of project baby'. It just really resonated with me 👧⭐🌈 • #ttc #ttcjourney #ttccommunity #ttcnumber1 #ttcnumberone #babydust #miscarriage #miscarriages #recurrentmiscarriage #babyloss #APS #antiphospholipidsyndrome #hypothyroid #hypothyroidism #ttcsisters #ttcaftermiscarriage #ttcsupport #baby #pregnancy #positivity #girl #fertility #infertility #ihadamiscarriage #ttcafterloss #marriage #couple #love #CD10 #femalecycle

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@ttc_partyofthree

Hiii! It’s been a couple months since I’ve posted or even logged into this account. I struggle a lot with jumping back into this journey, reliving old feelings and making myself completely vulnerable again. This year hiatus has been such a breath of fresh air but that undeniable urge to be a mom still lingered everyday. I try to remind myself when I’m feeling scared that it takes a really strong person to face their fears and I really do look to myself as my own hero. We have been to hell and back and yet here I am, slightly terrified to do all this again but the want to be parents far exceeds the fear. This time around I’m going to try my best to take it day by day, to not think too far into the future and simply allow this next chapter in life to be what it’s going to be. At the end of the day I can’t control the outcome but I can 100% control my outlook. So, this is the month that we will get back in it and start with an ERA biopsy. We recently just chose a set of 2 PGS tested embryos and hope to transfer those little babes within the next couple months 🤞🏻 . . . #embryoadoption #embryodonation #infertility #fet #erabiopsy #ttccommunity #ttcaftermiscarriage #ttcsisters #ttcsixyears #unexplainedinfertility #pgstesting #infertilitysucks #infertilityawareness #ttc #ttcafterloss #antiphospholipidsyndrome #mthfr

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@ttc_rainbowbabyb

CD10 already! This cycle is actually going really fast, which is a god send. Hoping to get a positive opk before I go home to visit my parents on Friday which will be CD 13. Until then, we will keep trying and hopefully there will be swimmers in place either way! Back in the summer a psychic predicted I would fall pregnant in Feb 2019. Is it too much to hope and pray she may be right? 16 months of trying now... where are you sticky rainbow? 🌈🌈🌈 • #ttc #ttcjourney #ttccommunity #ttcnumber1 #ttcnumberone #babydust #miscarriage #miscarriages #recurrentmiscarriage #babyloss #APS #antiphospholipidsyndrome #hypothyroid #hypothyroidism #ttcsisters #ttcaftermiscarriage #ttcsupport #baby #pregnancy #positivity #girl #fertility #infertility #ihadamiscarriage #ttcafterloss #marriage #couple #love #CD10 #femalecycle

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@judebw

Admitting that I need 'care' is hard, relying on my loved ones and recognising them as carers is painfully difficult. But help is out there and after years of struggling we are finally accessing some of it. Thank you @carerstrustcpn #chronicillness #chronicpain #chronicallyill #chronicallysick #sle #lupus #Antiphospholipidsyndrome #hughessyndrome #hypothyroidism #chronicmigraines #support #supportnetwork

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@lexilee06

I’ve seen my PCM. I’ve seen a cardiologist. I’ve met with the hematologist. Ive met with a rheumatologist. I’ve had a stress echo. I’ve worn a holter monitor for 24 hrs. I’ve had to have blood work consisting of approximately 17 vials of blood for the hematologist, results pending. I have another order for more, to check my ANA. So far the rheumatologist suggests daily aspirin since we are TTC. The cardiologist stated I have a PFO (fairly common, found in 25% of the population) and inappropriate sinus tachycardia in which I can try to naturally try to help it with meditation, tai chi, etc or try beta-blockers. I don’t want to have to go through another loss of a child ever again. That is why I’m determined to get as much info and as many medical opinions as possible. I don’t want to find out later that I was provided a common treatment but was contraindicated due to another condition or that something was overlooked because of an assumption of “oh you’re young and healthy, you don’t need testing/treatment.” And I encourage everyone to advocate for themselves when it comes to your health; if you want a second opinion, you have that right. Some doctors try to be conservative in their treatment/diagnosis to avoid people being “over-treated” unnecessarily. A lot of us worry unnecessarily but other times we need some concerns taken more seriously. And that’s okay. I’d rather be thorough than careless, though it would be nice to get my worried thoughts to chill out 😅 #stillborn #stillbirth #stillbirthawareness #miscarriage #fetaldemise #childloss #infantloss #daughter #angelbaby #angelmom #grief #grieving #sorrow #heartbreak #aps #hughessyndrome #antiphospholipidsyndrome #antiphospholipidantibodysyndrome

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@chronicallyshan

Awhile ago I posted a picture of my medical binder and SO many people messaged me asking how I organize it. Sooo without further ado In the front slot I have all the business cards of my doctors so they’re easily on hand in case I need them for some reason. Next, I have doctor appointment summaries with relevant info. I have it organized chronologically so it’s easy to find what I need. Then I have blood and other lab work results, again organized chronologically. Fourth, I have ER discharge papers/summaries. And last I have articles about my diseases to show doctors/other medical staff. Hope this helps anyone struggling to organize they’re own binders!

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@sdesimonee

We made it to our first milestone. This day in my last pregnancy we found out our little boy didn’t have a heartbeat. One of the worst days of my life, and I’ve been dreading coming up to this point in this pregnancy since the beginning. Now I’m laying down and my sweet little girl is kicking away. I feel blessed 💖 #pregnancyafterloss #rainbowbaby #lovenoxbaby #antiphospholipidsyndrome

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@katyscanvas

Over a year and a half ago, after finding out that our near full term baby boy had died in utero, I found myself at the footsteps of a path so painful it was beyond imagining. I began writing as a way to process emotions while navigating my way through the new mountain of grief before me. These writings evolved into a book and that book became available for purchase on Amazon the same week we brought our rainbow baby Rori home. In the book I share intimate details of our son, Beau’s, life and death, along with how my husband Brodie and I made it through the year after his departure. My hope is that this book will help others see that you can turn great loss into beauty and that broken pieces can be put back together. This book is about the year after. It is about our wonderful son Beau. It is about the highs and the lows. It is about the deepening, the stretching, the growing and ultimately the rebuild. Filled with raw emotions, profound thoughts, other Angel Baby stories and original watercolour paintings. There is both a colour and black and white version of the book. #infantloss #infantlossawareness #stillbirth #stillbirthsupport #antiphospholipidsyndrome #bereavedparents #griefsupport https://www.amazon.com/gp/aw/s/ref=nb_sb_ss_i_2_15?k=the+year+after+katy+martin&sprefix=the+year+after+&crid=XSC7WAYPXQ7M

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@katyscanvas

After finding out that our near full term baby boy had died in utero I found myself at the the footsteps of a path so painful it was beyond imagining. Our rainbow baby Rori was born a week and a half ago. Her birth was not without complication, but what we have learned is that “...courage is not the absence of fear but the triumph over it.” -Nelson Mandela. This is a video of Rori’s journey to us.

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@spooniesistershop

As a mostly undiagnosed patient, it’s always hilarious to see the cycle of thoughts doctors have during my new patient consults. First, they’re always a bit stiff and confused why I’m even there. Then, they start hearing my story/symptoms and they get even MORE confused why I’m there (...umm chronic abdominal area pain? Girl why are you in hematology, you need to get back to gastroenterology). But THEN there’s always a lightbulb moment when the intricacies of what I’m saying really click. And that’s always a magical moment, because from then on they are usually SUPER curious about my case. (Of course, there’s always the few that will still be dismissive and tell us to move on.) But I’m very lucky now to see top-notch doctors who are actually interested, actually care, and actually decide to dive into my case. Thankfully, the hematologist I saw this morning for the first time became very interested, and took a ton of blood labs for further testing. Probably won’t turn out to be anything significant, but I’m thankful for the curiosity & answers either way!🤷🏻‍♀️ . . . . . . . . . . #babewithamobilityaid #undiagnosed #spooniesisters #spoonie #spoonies #spoonielife #spoonieproblems #spooniestrong #chronicillness #chronicpainwarrior #chronicpain #chronicillnesswarrior #chronicallyfabulous #spooniewarrior #invisibleillness #butyoudontlooksick #chronicallyill #gastroparesis #dysautonomia #dysmotility #chronicmigraines #antiphospholipidsyndrome #invisibledisease #abdominalpain #lupus #ehlersdanlossyndrome #potsie #wheelchairlife #wheelchairgirl #hematology at Dallas, Texas

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@hanrogers12

Getting a top up 🧛🏼‍♀️ #iron #backtofullstrengthbywednesday #recovery #antiphospholipidsyndrome

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@justlikemardigra

Do you want to be more courageous? Bravery isn't something you're born with - you acquire it over time as you gain life experiences. You can practice being brave by acting on what your heart tells you to do and challenging yourself with new experiences, even when you're afraid. It can take a little time and a lot of patience with yourself, but with a positive attitude and helpful ways of thinking, you’ll find yourself becoming braver than you ever thought possible. at Dallas, Texas

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@waiting_to_be_mum_of_two

#artsandcraftsmorning #butterfly #heart #formylittlebutterflies When your daughter wants to paint hearts and butterflies for Valentine’s Day but all it reminds me of is our #angelbabies and how they might love painting and glitter with their big sis. How much she would love to have a painting buddy but hate it when they reached over onto hers 😝 #babyloss #miscarriage #siblingshurttoo #waitingtobemumoftwo #stickybloodsyndrome #antiphospholipidsyndrome

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@charitymbogho

I thank God that despite the pain I was in...two weeks and counting without being able to eat any solid food on top of everything else, I was able to attend this wonderful conference. God has been my one constant and He remains to be..my strength, my pillar, my everything 🙏. With my mum in Christ Rev. Vicky Mwangi. #IAmOneInAMillion👑 Mrembo experience 2019 . . . #HeartAttackSurvivor #StrokeSurvivor #PulmonaryEmbolismSurvivor💙 #AntiphospholipidSyndrome #AutismMum #AutismAdvocate #SpecialNeeds #Autism

2
@three_stromies

I was diagnosed with lupus in college. Lupus coupled with APS (clotting disorder) almost took my life in 2005. I survived a very rare and fatal form of APS that causes multiple organ failure. • The “almost dying” thing is not new to me. • I vividly remember talking to God at this time in my life and rededicating my life to Him. I told Him that if I survived, I’d spend the rest of my life serving Him in His kingdom. I strive to uphold my end of the bargain. He sure did. • So when I had two strokes in 2016, I never feared death. I know who my creator is and where I’ll go if I die. With that said, do I want to die? Heck no!! I’d hate to leave my family and the burden that would cause. Not to be able to grow old with my husband and see my daughter graduate. • With that said, I’m still here. I have two autoimmune disorders that attack my body and my brain tried to kill me twice. • The other two Stromies were the picture of health pre-stroke. Angie was a marathon runner and fitness instructor, Tamsen was a fitness instructor and spent 8 years in the military. They were healthy up until the day that they weren’t. Me...not so much. I was on Coumadin (blood thinner), immunosuppressants, the works - a lot of good that blood thinner did (whole different blog on that)! • All that to say, I’ve fought invisible illnesses for as long as I can remember. And now I have another one to add to the list. I don’t “look” like a stroke survivor. Just like I’ve never “looked” like my immune system is attacking me. • As a culture we stereotype being disabled as needing help with mobility. After I was denied social security disability, my lawyer said that the judge most likely made up his mind the minute he saw me walk through the door independently. It’s sad, but true. • As stroke survivors we need to continue educating society on the invisible side effects of stroke - neurofatigue, vision problems, sensory disturbances, etc. and we need to be proud of ourselves for what we’ve come through and what we fight behind the scenes to be who we appear to be on the outside. 📷: @leslieannfamilyphotography

38
@ttc_rainbowbabyb

How many times did you 'do the deed' before you ovulated to get pregnant? • • This cycle we are doing less supplements, less tracking and having more time in the bedroom! In fact my hubby told ME we should DTD every day now until Friday when I go away for 5 days. Usually it's me instigating these kinds of discussions, so I'm feeling very happy that he is fully on board this cycle. Just hope we catch the egg before I fly away ✈ #CD8 today! • #ttc #ttcjourney #ttccommunity #ttcnumber1 #ttcnumberone #babydust #miscarriage #miscarriages #recurrentmiscarriage #babyloss #APS #antiphospholipidsyndrome #hypothyroid #hypothyroidism #ttcsisters #ttcaftermiscarriage #ttcsupport #baby #pregnancy #positivity #girl #fertility #infertility #ihadamiscarriage #ttcafterloss #marriage #couple #ttcjourney

3
@iam_christinenicole

imagine someone telling you...”i could never be with you, because of what you have to deal with. it’s just [too] much.” OR “i could never be with you. if you get sick, i’ll be stuck with the children.” & then there’s all the hospital no shows. dismissed + dumped. ghosted, like i never existed. surprised? shocked? frustrated? yaaaaa...me too. suffering from multiple chronic illnesses & autoimmune disorders is not easy. in fact– it’s a learning process. trial & error. yes, every day is different & some days are harder than others, BUT [let me make one thing clear]– i am not hard to love. my life is just different. don’t ever allow [anyone] to belittle you & the warrior you are. forever evolving + fighting to survive are some of the most admirable characteristics i’ve ever encountered. humble souls, willing to help anyone. the biggest of hearts. ears that listen. arms to hug one another. loyalty. the ones who have left me hanging– it’s okay. i don’t expect you to fully understand my hardships, but it’s not i who is too hard to love, my dears. to all my fighters– keep going. don’t stop. love hard. release the bad seeds. ground your soul. & then BLOOM! XOX #mylupiejourney at Santa Clarita, California

11
@chronicallyillchristian

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. -Psalm 46:1-3 . . . #chronicillness #chronicillnesswarrior #Fibromyalgia #Lupus #antiphospholipidsyndrome #APS #posturalorthostatictachycardiasyndrome #POTS #celiacdisease #chronicmigraine #scoliosis #chronicpain #chronicpainwarrior #spoonie #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #sicklife #disabled #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability

0
@ttc_rainbowbabyb

Things I'm doing differently this cycle: 💊 No ttc supplements - I haven't fallen pregnant since I started taking them. Just eating super healthy. 🤒No temping. I find it addictive and stressful sometimes. 🍍🌰A whole pineapple from the day of positive ovulation kit and for 4 days after. Lots of Brazil nuts in the 2ww to help with implantation. 🚴‍♀️🧘‍♀️more exercise! • • • #ttc #ttcjourney #ttccommunity #ttcnumber1 #ttcnumberone #babydust #miscarriage #miscarriages #recurrentmiscarriage #babyloss #APS #antiphospholipidsyndrome #hypothyroid #hypothyroidism #ttcsisters #ttcaftermiscarriage #ttcsupport #baby #pregnancy #positivity #girl #fertility #infertility #ihadamiscarriage #ttcafterloss #marriage #couple #ttcjourney

3
@waiting_to_be_mum_of_two

#stuckinthemud #stickybloodsyndrome So yesterday marked the first day that I felt the #nhs started to help me after our #threerecurrentmiscarriages After attending an obs appointment two weeks ago that was meant to be cancelled (following my last miscarriage) I was unofficially seen by a different specialist. Who advised I challenge my “discharge” from gynaecology if not simply to ask all the questions I had ... what are the chances of this happening again? Should I be waiting afterwards? And also understanding what had happened in each of our miscarriages. So yesterday, thanks to a lovely secretary who #understood and this specialist, I finally found out that it’s looking likely that I have #stickyblood #antiphospholipidsyndrome I need another non pregnant scan and a second blood test in April to confirm that... both ideally while not pregnant. So now I do really feel stuck in the mud. We don’t fall #pregnant easily but having the syndrome confirmed will mean I am automatically put at #highrisk and be prescribed #aspirinandheparin If I fall pregnant first then it’s making sure I can get an emergency appointment to be seen and start medication before it’s too late. #nomansland #babyloss #waitingtobemumoftwo #ivealreadywaitedtoolong #alliwanttoseeistwobluelines

0
@chronicallyillchristian

Cast all your anxiety on him because he cares for you. - 1 Peter 5:7 . . . #Repost @blue_chair_blessing with @get_repost ・・・ I love how there's a "because" after the command. We know why we can cast our anxiety on Him. All of it even. Thank you, Lord. Your burden is light. We don't have to carry our our sorrows...help us to remember to give them - cast them onto You. You're a good Father and you know how to deal with every part of everything we're holding inside. Amen. . . . #anxiety #chronicillness #chronicillnesswarrior #Fibromyalgia #Lupus #antiphospholipidsyndrome #APS #posturalorthostatictachycardiasyndrome #POTS #celiacdisease #chronicmigraine #scoliosis #chronicpain #chronicpainwarrior #spoonie #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #sicklife #disabled #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability

0
@the_nurse_chronicals

Despite some rough patches I’ve been dealing with in my life right now, I’ve gotten some fantastic news. •••••••• I’ve been in contact with a Surgeon up at the University of Wisconsin- Madison, who specializes in both Nutcracker Syndrome/Pelvic CongestionSyndrome and Loin Pain Hematuria Syndrome. •••••••• Last week I spent over an HOUR on the phone with the surgical teams nurse, who went in depth about my medical history, my symptoms.. just Everything you’d want a professional to gather. She said that she just needed my images to be sent over, and then she’d present my case to the vascular surgery team. •••••••• This evening I received a call from the nurse stating that the surgical team has accepted my case and they want me to come up to UW for two days, one for testing, the following day to discuss the testing with the surgical team. If everything works out in my favor, I should be a candidate for an Autotransplant of my kidney •••••••• Once insurance approves everything, the nurse should be calling back soon so I can set up the dates to go up to UW and begin my preliminary testing for left kidney and ureter autotransplant to fix my Nutcracker Syndrome! •••••••• I’m so beyond thrilled to finally have a team of surgeons who are highly familiar with NCS, LPHS and understand EDS!!! They’ve actually noticed a good majority of their patients also have EDS, so they do believe there is a link between Vascular compression disorders and EDS, which is super interesting. •••••••• I’m looking forward to being one step closer to getting rid of this kidney and pelvic pain that I’ve been riddled with for 6 months. 🙏🏻🙏🏻🙏🏻 . . #nutcracker #nutcrackersyndrome #ncs #renalveinentrapment #renalveincompression #autotransplant #kidney #kidneybrobs #goodnews #hopeful #ehlersdanlos #eds #ehlersdanlossyndrome #invisibleillness #kidneypain #loinpainhematuriasyndrome #surgery #connectivetissuedisorder #zebra #rare #chronicillness #zebrawarrior #chronicpain #rheumatoidarthritis #antiphospholipidsyndrome #autoimmunedisease #sjogrens #dysautonomia #gastroparesis #gjtube #rare

36
@justlikemardigra

Hmmmm #thehateugive at Dallas, Texas

8
@ravenredphoto

#Repost @angela.ravenred with @make_repost ・・・ A self portrait to celebrate 6 months post op tomorrow . I am so thankful for how far I have come and for everyone that has been a part of this journey. But it’s been tough and I’m still fighting to regain my health and the life I dream of. I’m frustrated that I am not where I want to be. It’s hard when my health requires so much of my time. I feel like I have lost precious moments to the diseases I live with and it’s a struggle to balance everything even now. Maybe that’s why I get so frustrated when people waste my time even if it’s not intentional. It’s my most precious resource. Being told you may only have a couple of years to live makes you have a new relationship with time. I value it like never before. None of us ever know how much time we have in this world so all we can do is use it mindfully. The past few years has changed me in countless manners. In many ways it’s made me a better person but it’s also given me a “take no shit“ attitude. So yeah, I’m kinder but also tougher and don’t waste my time 🖤• • • • #igsanantonio #sanantonioboudoir #bodypositive #selflove #selfportrait #chronicillness #antiphospholipidsyndrome #pulmonaryhypertension #pulmonaryembolism #cteph #strokesurvivor #ptesurgery #openheartsurgery

2
@chronicallyshan

Cancelled the 2 appointments I had this week. 3rd appointment I’ve canceled in the last week and a half. I’m so burnt out. I’m so stressed. I’m so overwhelmed. Between school and work and social life and my health I feel like I’m drowning in a list of everything I need to accomplish. Be this, do that, help them. I’m exhausted trying to be everything for everyone. It’s not realistic or healthy. I’m not posting this for pity or advice but to show that sometimes there isn’t a good balance in life. Sometimes you’re exhausted and run down and want to scream into a black hole for 5 minutes and then stuff your face with ice cream 🤷🏼‍♀️ at Los Angeles, California

9
@angela.ravenred

A self portrait to celebrate 6 months post op tomorrow . I am so thankful for how far I have come and for everyone that has been a part of this journey. But it’s been tough and I’m still fighting to regain my health and the life I dream of. I’m frustrated that I am not where I want to be. It’s hard when my health requires so much of my time. I feel like I have lost precious moments to the diseases I live with and it’s a struggle to balance everything even now. Maybe that’s why I get so frustrated when people waste my time even if it’s not intentional. It’s my most precious resource. Being told you may only have a couple of years to live makes you have a new relationship with time. I value it like never before. None of us ever know how much time we have in this world so all we can do is use it mindfully. The past few years has changed me in countless manners. In many ways it’s made me a better person but it’s also given me a “take no shit“ attitude. So yeah, I’m kinder but also tougher and don’t waste my time 🖤• • • • #igsanantonio #sanantonioboudoir #bodypositive #selflove #selfportrait #chronicillness #antiphospholipidsyndrome #pulmonaryhypertension #pulmonaryembolism #cteph #strokesurvivor #ptesurgery #openheartsurgery at San Antonio, Texas

3
@shannon_campbell2

This little shake I drink everyday is so much more than a shake...it is a game changer in my life! . Did you know it helps in these areas? Reduces inflammation Improves digestion Reduces cravings Improves heart health Improves brain function . I don't know about you, but I needed help in all of those areas. . Curious to try it?? . I have 5 samples I would love to give away to the first 5 people that message me. . . . #70superfoods #sixtripstothesaladbar at Stratford, Ontario

5
@ttc_rainbowbabyb

Hey guys! I've taken a real break from apps, tracking and temping the last few weeks while we travelled around South Africa. It's been really good for me I think, as right before I left I felt like ttc was well and truly consuming my every thought. We had such an adventure. I'm CD4 today. My period finally came on holiday after 73 (!!!) days, and for the first time it was a relief to see red. I never have long cycles so my body was obviously telling me something. Even though we didnt conceive our rainbow on holiday, it was so amazing to relax and let my hair down with my husband and our friends. This marks 16 months ttc for baby number 1. I'm not temping or doing opks this cycle, just going to DTD as much as possible. I haven't gotten pregnant since I started temping 6 months ago. I think my body finds the tracking more stressful than I realised. I'll be looking out for natural signs though! Wish me luck everyone 😘 #ttc #ttcjourney #ttccommunity #ttcnumber1 #ttcnumberone #babydust #miscarriage #miscarriages #recurrentmiscarriage #babyloss #APS #antiphospholipidsyndrome #hypothyroid #hypothyroidism #ttcsisters #ttcaftermiscarriage #ttcsupport #baby #pregnancy #positivity #girl #fertility #infertility #ihadamiscarriage #ttcafterloss #marriage #couple #ttcjourney

2
@sheridansquire

My baby Josephine, it was 4 years ago today that you came into this world and at the same time left. I am so sorry my angel that I could not protect you as a mother is meant to. Your life was ended prematurely so I could live. I am sorry that I was not able to give you the love I would have wanted to give you as my body was fighting to survive. I am so proud of you. You looked perfect but weren’t yet ready for this world. God needed your beautiful soul. My heart aches and I have to catch my breath when I think of you. I feel so blessed and grateful for the pure love you gave me. You are loved in heaven and on earth and are part of my heart and soul until we meet again. Night night my sweet Josephine 👼 👐🏻 💞 + + #aps #caps #hughessyndrome #antiphospholipidsyndrome #babyloss #blisscharity #gonetoosoon #blissbabycharity #sandscharity #sandsstillbornandneonataldeathcharity #4yearsbabyloss #miscarriage #multiplemiscarriage #brokendreams #broken #whenyourworldcrashesdown #castlestreetflowers #love #family at Farnham

6
@20puenktchen19

8
@neenaearl

It’s been five years since your little heart took its last beat. My body couldn’t provide the safety and protection that you needed and that pain and guilt will never go away. I know you love me and could never be mad at me for that but I’m mad at myself. You died alone. Without me even knowing it happened until it was too late. The pain is almost too unbearable. I hope one day this burden is easier to bear. I love you so much my sweet, Indi. 💜 #stillborn #stillbirth #stillbornstillloved #cholestasis #antiphospholipidsyndrome

79
@queenbtrfly_

Let me tell you, if you didn't know, autoimmune disorders SUCK! One day I can feel fine, like an ordinary happy self. Then the next feel so fatigued that doing the minimum Momming takes every thing I have! Joint pain, arthritis, brain fog, headaches, feeling awful with no visible signs. I almost "forget" my body attacks my own cells mistakenly. Painfully I am always reminded of what is happening. Throw in a dash of depression, years of a grieving heart and an excess of stress and voila, I have seizures! It's ok. I'm ok. I'm going to be more ok'er every day 😬 life brings you around a lot but learning how to push ourselves forward is so crucial. I have my moments where I feel weak, and then those where I'm conquering my fears. At least I can be honest and honor my body and what it's telling me.

5
@shannon_campbell2

$160. . That is how much I invested in myself over a year ago which led me to: . Losing 37 lbs Starting my own business Paying for our groceries, dog food plus our fun money each week and even treating myself to a few self love indulgences more often. . Be a part of an amazing community of women that LIFT each other up . It boggles my mind that people don’t think twice about spending money on trendy clothes, or spend the money to eat out multiple times a week but when it comes to investing in their health they don’t want to spend the money on a fitness program and quality superfoods shake. . I hear too often “being healthy it too expensive” BUT being unhealthy is much more expensive people. Think about missed time off work, prescriptions etc. . It is all about how you manage your money and where your health falls on your list of prioritites. . Drop a 💜 below if you're interested in how I earn money while getting healthy. . We have a sneak peek this week and I would love for you to check it out. . . . #makingmyselfapriorityeveryday #healthiesversionofme #sidehustleideas at Stratford, Ontario

6
@effietakestheworld

The docs are concerned about my low blood platelet counts. We aren't sure if it's my #autoimmune disorder #antiphospholipidsyndrome causing the issue or the medications for the #vestibularmigraine or something completely different. As a result I am absolutely exhausted all the dadgum time. But either way I'm doing what I can to increase foods with vitamin A, K, and folate to see if that helps. So if you need me, I'll be face deep in this bowl of #kale.

5
@rcastrey

2018 has been the hardest and absolute best year of my life. This year has been very humbling. I have had some health complications that have been scary and frustrating (having to be more dependent with the medication I am on). Along with all of the hard health diagnoses, I have seen Jake completely step up and not only take on a huge load with Royce but also help me and pick me up off the floor on multiple occasions. I became a mom and was blessed with my sweet, healthy, and happy son. My little family is everything to me and although health issues and medical bills have been hard this year the happy times have far outweighed the sad and I have been so beyond blessed. 2018 will always be a special year for us, and we are excited to see what 2019 has in store for our family! #roycesamuelbowser

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