Day 23: Dysautonomia Brave 📸 An old selfie for today, as I didn't do much. It was IV infusion day, and I had forgotten to post today! Being brave with dysautonomia can mean various things. It could be facing blood work, and test after test. Facing your fears about fainting in public, or having to sit down in the middle of aisle at a grocery store (because you don't have time to move anywhere else). Sometimes being brave is just calling the doctors and pharmacy for the umpteenth time, because you're exhausted and you might start crying on them.. and you don't don't want to do that. But other times, being brave, is just being aware enough to tell your friends (and yourself!) that you're not up for doing something. A dysautonomia warrior has to be brave countless times in a day. From just getting up out of bed in the morning, to having a shower before bed. We have to make choices that push our comfort levels and limits. Are you dysautonomia brave? 💙 #thedysautonomiaproject #makenoiseforturquoise #dysautonomia #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #chronicpain #chronicillness #chronicmigraine #spoonie #spoonielife #zebrastrong #beingbrave
16 1
Well, as much as I didn’t want to, I contacted my cardiologist to let him know my “miracle drug” Corlanor isn’t working as great as it was earlier on in the year... between my syncopal and many presyncopal episodes, constantly crappy BP and unpredictable HR, he wanted me in within the next two weeks no matter what. Ugh. I had so much faith in Corlanor since it was working so well, I’m just hoping it’s one of my other meds that’s interfering with it and causing my symptoms. Fingers crossed. Now off to work ! Adulting no matter what my body is doing 😝 . . #dysautonomia #autonomicdysfunction #orthostaticintolerance #orthostatichypotension #posturalorthostatictachycardiasyndrome #svt #sanrt #heartprobs #inappropriatesinustachycardia #tachycardia #tachylife #spoonie #spoonieprobs #spoonielife #adulting #cantstopwontstop #ehlersdanlos #ehlersdanlossyndrome #eds #zebrastrong #zebrawarrior #corlanor
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I’m super sick right now and feel like absolute poop! BUT! Is there anything you guys would like me to add to my disability awareness table at my campus? If you leave a comment I’ll type them out and post them on the board (with your Instagram handles)! It can be anything. Something that annoys you that people do or something you wish people would understand. Things like that :)
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“23. Dysautonomia Brave!” This is me being brave. No makeup, no filter, unfixed hair, no real clothes, in my shower chair, after a shower. A version of my rawest self. Not only that, but showers are very difficult when you have POTS. It combines a lot of factors that are dangerous for us and cause our symptoms. Fist of all, you typically have to stand. When we stand our blood drains from our upper body and pools in our lower body. Our brains and hearts aren’t getting the proper amount of blood and oxygen. Standing alone brings out all our symptoms and causes pre-syncope or syncope episodes. But the struggle with a shower doesn’t end there. You also have the element of heat and steam. Heat intolerance is another symptom of POTS. Our body’s can not regulate temperature properly and it triggers additional symptoms. When I’m even sitting in heat, my heat rate will be 30 beats higher than in a cooler environment. Additionally, there is a lot of postural changes involved when taking a shower such as, bending over to shave your legs or pick up shampoo bottles, and putting your arms above your head to wash your hair. I’ve blacked out from putting my arms above my head in a seated, cool environment, let alone in a hot environment while standing. With that said my shower chair is essential, but it doesn’t even get rid of the elements that are so difficult. So yes, taking a shower is often an act of bravery for us, I know it is for me. 💙#thedysautonomiaproject #dysautonomia #dysautonomiaawareness #dysautonomiaawarenessmonth #potsie #posturalorthostatictachycardiasyndrome #potsawareness #sick #tbi #braininjury #chronicallyill #chronicillness #invisibleillness #invisibledisability #makenoiseforturquoise #chronicillnesswarrior #chronicfatigue #brave #syncope #fainting #tachycardia #nomakeup #nofilter #spoonie #spoonielife #blueeyes #awareness #keepfighting
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Current situation...anyone else ever notice how the elastomeric pump balls look like little grenades 💣 I always think about that and how it's fitting because they're waging a war against Lyme! #diespirochetesdie Haven't posted in awhile because I've been doing nothing but resting and recovering with my family after travel. It's crazy how much a single flight can wear me out even with wheelchair assistance. 🤷‍♀️guess that's #lifewithlyme & #lifewithmecfs
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One year ago today, I spent the entire day in bed. I had woken up at 5:30AM with diarrhea that occurred every 10 minutes for two hours straight. My stomach felt like it was on fire, and I couldn’t even stand up straight because of the pain. After taking more than the recommended amount of Imodium, things finally calmed down, though my pain still wouldn’t let up. I kept sending frantic emails to my professors letting them know that I wouldn’t be in class the next day, fully convinced that I had gotten food poisoning. The biggest worry on my mind at that point was that I was missing a day of training for my race that weekend, and that spending the day in bed would mean I wouldn’t perform as well. I went to bed that night praying that I would wake up feeling well enough to go to the gym and get some homework done, but since I could barely stomach the half of a banana and single cup of chicken broth that I force-fed myself as my only food for the entire day, things didn’t look promising. But hey, I was feeling optimistic, even though I had managed to take a grand total of 100 steps all day ... #mollyollyostomy #ileostomy #ostomy #chronicillness #invisibleillness #spoonie #nocolonstillrollin #ostomates #stoma #ittakesguts #girlswithguts #chronicallymotivated #posturalorthostatictachycardiasyndrome #POTS #dysautonomia #EDS #EhlersDanlosSyndrome
48 2
My port placement went perfectly! 🎉 The radiologist who placed my port was the same doctor who placed my feeding tube, so I was very comfortable and familiar with his team. Everyone was so kind and caring, and I firmly believe God placed all the right people in my path for this procedure. I was in good hands! I feel much better than I expected I would; I tolerated the sedative much better this time, and while I am sore, it’s definitely tolerable. Honestly, it isn’t much worse than the daily chronic pain levels I experience from my EDS, so I’m really pleased. Hopefully everything heals up well and I’ll have no problems using my port for my saline infusion later this week! 👍🏻 Thank you so much to everyone who has been keeping me in their thoughts and prayers. Your support is invaluable! 💕 #ehlersdanlossyndrome #chronicpain #dysautonomia #portacath #posturalorthostatictachycardiasyndrome #gastroparesis #feedingtube #gjtube #tubie #spoonie #chronicillness #invisibleillness
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Good news guys! My spider bite is almost healed!!! 🎉 (In this picture I’m saying THANK GOD I HAVE TWO ARMS STILL 🙌🏼) This means I am able to work out again! Bad news: I had an awful workout today. 😓👎🏼I only got 15 minutes of cardio in and then my anxiety kicked in and all else went wrong🙈, plus after not working out for a week, I’m a lot weaker than I was a week ago. ☹️(My body is oh so VERY ANNOYINGLY sensitive and changes in an instant.) But the important part is: ➡️I worked out⬅️I accomplished something toward my #bodygoals today whereas I could’ve (very easily) taken another rest day. 🛏 It’s hard to get back to working out after you’ve had a break, for however long, for whatever reason, but the important part is that you do it. Try your best and you’ve accomplished something. All you have to do is get up and do SOMETHING. P.S. This isn’t an excuse to give minimal effort every day, but after you get into a workout routine and give it your all every time, you get to know yourself really well and can tell when you actually need to stop.
16 3
Reynolds was AMAZING! He told me that he wants me to get genetic testing since I am kind of flexible but not enough. He wants me to get testing for mitochondrial diseases in addition to EDS. He said that gastroparesis does cause pain but not the level I am experiencing so he is doing an endoscopy to check for any inflammatory diseases. He said on the MRI I had of my brain, my cerebellum was in the wrong spot and he is intrigued by that. He said he has never seen that in 36 years. I need to see neuro but he wants my doctor to recommend somebody. He said they can't do anything for my GP because there isn't much to help it. He said he hopes at some point in the course of my treatment that I will be able to eat something but it won't be any time soon which we assumed. He said I will have all these extra gizmos for the rest of my life probably. He said we probably won't get me off the tube but we will improve my quality of life. Overall, it was definitely worth the 6 month wait. I see him for my endoscopy the day before thanksgiving and see the NP on November 28. Everything is finally making sense into figuring my body out. #typeonediabetes #gastroparesis #gastroparesissucks #gastroparesiswarrior #pots #potssyndrome #posturalorthostatictachycardiasyndrome #mcad #gjtube #ehlersdanlossyndrome
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My heart rate may have been in the 180s the whole time but I successfully completed .62 miles WITHOUT passing out for the first time in over a month!! 🙌🙌 #progress #progressnotperfection #posturalorthostatictachycardiasyndrome #pots #dysautonomia #ididit
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Well this is fun 😥 all I did was stand up and put something on the other table #pots #posturalorthostatictachycardiasyndrome
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