Well that didn’t go as planned.... I’m on my way home now though. During the GES I got into tons of pain and got really pale. I mean I usually don’t eat eggs (especially radioactive eggs) but wow. I was in so much pain and no one knew what was causing it so I got sent down the hall to the ER. Apparently eating something “new” can cause pain like that and do with some aluminum (I think, but I’m not sure because typing it makes me question it) I am doing a lot better and now homeward bound. After the events of today I was 1600 calories behind schedule 😳. But I don’t want to eat a ton all at once because of the pain. Random fact: Also the ER doctor from today is the doctor from the other hospital’s fiancé.
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happy #InvisibleIllnessAwarenessWeek although EDS can make everyday tasks demanding, tricky, and aggregating to overcome, I'm thankful for the strengths this syndrome has caused me to find in myself...and for how much more interesting it makes PA school 🤓 • never take the little things for granted, even if it just means appreciating the sunshine for a few extra minutes each day 💛🌸 • #butyoudontlooksick #InvisibleNoMore #EDSawareness #chronicillness #zebrastrong #spoonie
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Somedays invisible illnesses are a little bit less invisible than others. But the thing is, when I take off all of the braces and my mask, unhook all the tubing, hide the scars and bandages away, I look like a normal 21 year old girl. Friends smile and tell me how much better I look today and strangers don’t give me a second glance. But the truth is that I am still just as sick. Im still the exact same girl. And I guess thats what people don’t understand about having an invisible illness. How can someone look normal and healthy one day but then be in braces and a wheelchair the next? They don’t understand what is going on inside or hidden just out of sight. They don't see the metal and the tubing that is keeping me alive. The truth is that nobody can ever truly know what is going on inside someone else. So how about we all try to be a little bit more forgiving and understanding of one another? Huh? Because you never know what they might have going on just below the surface.💕 . . . . . . . . . . #chronicillness #invisibleillness #chronicpain #zebrastrong #invisibleillnessawarenessweek #butyoudontlookssick #invisibledisabilitiesweek #raredisease #dysautonomia #spoonie #tubie #spinalfusion #tensunit #feedingpump #ivpump #mastcell #feedingtube #portacath #invisibleillnessweek #dysautonomiaawarenessmonth #pots #themighty #themightysite #edsawareness
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We are getting excited for the walk for Primary Immunodeficiency this Sunday in NYC! Who's going? #walkforpiNYC #idfwalkforpi #zebrastrong
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Min sjukgymnast och jag lurade ut igår att jag ska använda kinesiologitejp på båda knäna och axlarna nu ett tag tills jag får mina ortoser. Det hjälper lite men jag kan fortfarande översträcka och subluxera lederna. Men det här är dyrt. (Om någon av mina vänner ska till Ullared inom den närmaste tiden får ni gärna hojta. Jag behöver en sisådär 20-30 rullar.) * * * My physioteraphist and I think it's a good idea to try kinesiology tape or balance tape. At least til I get my orthoses. I think it helps a bit but it can't stop the subluxations. #ehlersdanlos #zebrastrong #chronicpain
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Life isn't meant to be easy. We don't grow when things are easy. We grow when we are faced with challenges ✨ Yesterday I had a consultation with a pioneering specialist in Cambridge. It's a relief to have finally discovered the reasons for my quick deterioration, but we are also very overwhelmed by it all trying to process the complexity of the situation that I am faced with. Sadly, it has been confirmed that there are multiple areas in my brain that are suffering from serious blood flow problems. In the next few weeks I'll be undergoing further investigations and procedures to determine which surgical treatments I will need to prevent my brain from getting more sick and potentially risking my life. Thank you all for your continued prayers, thoughts and support. I'm beyond grateful to have my twin walking by my side every step of the way through this unknown journey 🍂🦋💫• Laura Lee • #nevergiveup #zebrastrong #hope #invisibleillness #butyoudontlooksick #autumn
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Went for blood work today and it was totally painless! 💉👍🏼 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ So, October is actually Dysautonomia Awareness Month. Basically, dysautonomia is an umbrella term used to describe conditions that cause a malfunction of the autonomic nervous system, which controls “automatic” bodily functions like blood pressure and heart rate. Like many people with Ehlers-Danlos Syndrome, I have dysautonomia, so I deal with symptoms like dizziness, presyncope, and low blood pressure, mainly when upright. Specifically, my cardiologist diagnosed me with orthostatic hypotension (OH) and suspects that I may also have a form of postural orthostatic tachycardia syndrome (POTS). ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I haven’t had much success with first-line medications for these conditions, so the next step is a port-a-cath for regular saline infusions. Saline increases blood volume, which raises blood pressure and thus eases dysautonomia symptoms. It will also provide another method of hydration, which is important since the ileostomy will put me at a higher risk of dehydration (which exacerbates OH symptoms), and I already have difficulty staying adequately hydrated. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Sometime next week I will be getting the port placed, which required this pre-op blood work. The thought of having a port used to scare me, but after hearing others’ experiences with it, I feel more comfortable with the procedure. I’m glad I will be getting it done before the ileostomy so that it can hopefully be accessed in time for my surgery, and I can thus avoid multiple IVs in the hospital. I also welcome any words of advice from current port users! 😊 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #por#porth #port #dysautonomia #orthostatichypotension #pots #ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome
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I swear she’s smiling...
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Lucky to have Ashley from @dainty_design_ on our barista team so she can make us rad muffin signs (and yummy coffee drinks of course) #proudfamily #zebrastrong #muffins #daintydesigns #supportyourown
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Day 18: Dysautonomia Warrior 📸 This shirt from @thefreylife simply states my mantra, as I go to "war" every day with dysautonomia, among my other chronic illnesses. When I'm having a particularly hard day, I'll repeat to myself "do what you think you can't do!" Chronic illness warriors have to assess their every action to determine how it'll help their fight in the war of illness. From the moment I wake up, to the moment I go to bed, I must calculate how to get through the day. One of the biggest things I've learned as a dysautonomia warrior, is to listen to your body. Accept that it's okay if you need to lay down all day. But it's also okay to push a bit to make special memories. Never be ashamed of what your body can or can't do. For many chronic illness warriors, this is a life-long fight, but if we join together, and help each other through it, it'll be okay ❤️ #thedysautonomiaproject #thefreylife #makenoiseforturquoise #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #gastroparesis #chronicpain #chronicillness #chronicmigraine #spoonie #spoonielife #zebrastrong #mcad #mcas
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