Tomorrow is going to be a busy day.
When I scheduled to have the blood test done tomorrow I forgot all about having the CT and PT as well.
So at 7 AM I go to the children’s hospital lab for baseline labs. Then go to the endocrinology clinic and then go back to the lab for a blood draw after the injection.
This is all to check my body’s cortisol production.
Then at 10:15 I have PT. usually that lasts about an hour.
Then home to rest and then back to the children’s hospital for the sinus CT at 4:30. I really hope it doesn’t have contrast because contrast makes me feel all weird. (TMI coming - blood and poo)
Last night my stomach was killing me and it was making all kinds of noises.
Then when I woke up this morning I pooped and there was a bunch of blood. 🤦♀️ My mom asked if I took a picture, but I’m not sure how I am supposed to do that because it is under toilet paper.
I don’t know what would be causing this right now because it is not from the biopsies anymore.
As for the biopsies we have not gotten the results from then and I don’t know the next time I will be getting in to see that doctor.
Needed to see this tonight.. so just in case someone somewhere needs it to 💞
Had my sister tell me all of the things that she thinks I am and that I do. Lazy, attention seeking, faking pain, faking being ill, faking it when I need medical attention. That #ehlersdanlossyndrome
doesn't exist and I'm making it up. That I don't deserve to be happy. That I'll never be a doctor. That I'm a waste of space. Yes, my sister said all of that. Afterwards I started bawling, because my own family doesn't and never will understand me and they don't even care to. Then I realized, what am I crying for? Sure she's my sister, but I don't need her. In all honestly, I've never needed anyone. I was taught young how to be stone cold and self reliant. So that's exactly what I will be. Just because I'm ill doesn't make me any less of a human being. I deserve to be here and I deserve to be happy. But I've come to realize, not everyone deserves to share in that with me. And that's okay, I'll find my people one day.
#quote #words #jraymond #mentalhealth #Health #bipolar #PTSD #ana #edrecovery #selflove #congenitalheartdefect #gastroparesis #interstitialcystitis #hidradenitissuppurativa #chronicillness #invisibleillness #spoonie #spooniestrong #warrior #hope #faith #therapypet #ilovemydog #ilovemycat #artist #medstudent #goodvibes #positivevibes #positivevibesonly
this may be the easiest task ever to teach him?? this is day two and i just added “take it” approximately two minutes ago so...
i am very confused bc he never plays, but this is fun for him i guess. also peep the possessive paw 😂😂 what a goof
This is when I first got my Pulse Oximeter! Dont you just love POTS!-
I saw a bracing specialist a few days ago and he is making me two custom knee braces with hinges and full patella support! I cant wait for those because the braces I have no are not cutting it! I also got a shoulder brace that (hopefully!) will help some of the dislocations and pain I am having that is caused by my failing shoulder surgery! I cant wait for either but it takes a few weeks for them to be made! I am hoping that the braces work out and if they do I am hopeful that I will be able to get good braces from the same guy in the future!
I started my first day of school yesterday and boy was I nervous!! I had so much anxiety and stress over the idea of school. I was basically stressing about being stressed. I was glad that my joint pain wasnt as bad! However today, my joint pain was acting up. My back has been hurting all day and out of NO WHERE my neck started hurting causing a horrible burning tension headache! I am glad it went away tho!
I also saw my nephrologist and I no longer have proteinuria!! I am checking back up with him in 6 months and if everything goes to plan I wont have to see him again!!
| Disability: #EhlersDanlosSyndrome
Favourite quote: "Your life is your life, don't let it be clubbed into dank submission" Charles Bukowski
DOUBLE TAP to show your love for this beautiful woman, and please FOLLOW her
The universe will always have my back. •Saw the motility specialist today and didn’t get the best news. I’m officially down to 118 pounds (high school weight). I’m not complaining RIGHT NOW.. but I’ve lost a total of 15 pounds in one month due to vomiting. If it continues.. we spoke about a feeding tube. 🙅♀️ #never
again. Anyone have some #gastroparesis
tips? High calorie drinks?
-When I spent three days in the hospital with cyclic vomiting. Ive never been so sick. They believe that my autonomic system was stuck in a loop. They tried every anti nausea medication they had to no avail. •DID YOU KNOW; the human body produces 8 liters of bile a day?
Thankfully, a smart and handsome resident did some studying and used a brand new anti vomiting medication that no one had ever used was finally tried and WORKED! I was then given my saving grace for my #stiffpersonsyndrome
). Im continuing to make progress with IVIG and regaining life 💪🏼small setbacks lead to bigger comebacks. I have #IVIG
again Friday and can’t wait for more improvement!
I’ve recently cut ties with toxic people in my life and fully focused on my health, work and back to the kiddos at school ♥️
•cheers to the highest hopes and the best life ahead.
#universehasyourback #universe #positiveenergy #newbeginings #cyclicvomitingsyndrome #dismotility #warrior #spoonie #chronicillness #specialedteacher #crohns #ehlersdanlossyndrome #warrior #justkeepswimming
a wobbly thumbs up to you all!
So excited to start the 2B Mindset program!!! I have gained a ridiculous amount of weight in the past year as my EDS progressed and my health declined. I can not wait to get healthy again and be more positive towards myself. My body may not feel good but at least I can give it the nutrition I need to do the best I can. Here's to a healthy fresh start and the beginning of a life style change 💜 I'm ready to break out of the hell that my disease is trying to trap me in.
#2bmindset #ehlersdanlossyndrome #chronicillness #gethealthy #weightloss
Yikes! The #seattle #skykine
looks like #california
‘s. The fires are so sad! I’ve had an #interesting
few days. #sunday
a man passed out while talking to me in Target and I tried to catch/slow down his face-first fall into the shelf with hooks and hanging frames (he hit his head and face so many times and I was worried that something hit his eyes but luckily no blood or a scratch)- but I can’t grab things, especially a falling man, with my thumb/hand healing from #surgeries
, so we both fell to the floor with my knees taking the brunt of my weight and bit of his. I had to call #911
cuz no one was around us until I managed to grab another customer’s eye and told her to grab an employee. Another woman came around the corner while I was talking to 911 and I asked her to help get him off me and turn him over (I couldn’t tell if he was breathing with his face down). He eventually opened his eyes but was on responsive and I could feel his hand trembling on my lap but it wasn’t a seizure thankfully- he woke up after around 4/5 minutes and he didn’t remember any of it and then he told me he actually dreamt. EMTs got there and vitals were okay. Then #monday
I went to my neurologist/headache specialist appointment and she told me to go to UW and become a Physicians Assistant and she printed out the course list and said I would be really good at diagnosing and treating patients. #omg
it would be my #dreamcometrue
! And then today I went to my Spine Specialist’s Office for elected #torture
(; Honestly dry needling hurts like hell but it is #helping
me so much!!! My muscles are responding #positively
and it’s helping my #eds
! #ehlersdanlossyndrome #keepingthingsinteresting #thiswildlife #pnw #dreams #adventure #meetingnewpeople
“The occasion for struggle is the occasion for victory.” I had a moment today when I thought that I could not take one more step. I nearly sat in the middle of the sidewalk and gave up. But I did take another step....and another....and eventually I made it through the work day and got to sit on my couch with a cup of tea. Of course this is what I opened my book to haha! Victories, friends!
What has been your greatest victory today? Maybe it was being able to smile at someone who bothers you, or lifting heavier weights than you have before. Maybe it was taking a shower or acing a test. Whatever it has been for you, notice your victories and remember that every time you struggle is a chance to have another win!
Sara finished her amazing linoleum block tonight and printed the first of many migraine prints. I have teamed up with a fellow ‘Maine Migraineur’ who I met through the director of @outofmyheadthefilm
- We are going to be hosting a film screening of the #outofmyheadfilm
on October 10th at Nickelodeon Cinemas in downtown Portland, Maine. Stay tuned for how you can reserve tickets to come to this showing. We do need a certain amount of tickets reserved to host the screening! If you know and love someone with migraine and you can make it to Portland, you need to come and see this film. The prints will be for sale on our website Hypermobileus.com - The website is not live YET, but we are/have been working on it for a while. We are also going to be launching an Instagram for Hypermobile in the near future. Our company was created to help raise awareness about Ehlers Danlos Syndrome, Hypermobility, type 3- which I was diagnosed with in September of 2016. EDS is a multi-systemic genetic connective tissue disorder that affects your skin, bones, blood vessels, muscles, ligaments, nerves as a result of faulty collagen. Primary complications seen in Hypermobile EDS are loose joints constantly subluxing and dislocating, causing chronic wide spread body pain, EDS presents co morbidities such as POTS, Fibromyalgia, chronic fatigue, chronic migraines, rupture of major blood vessels, cranio-cervical instability, Osteoporosis, early onset of arthritis and other heart, GI, and neurological disorders. It is known to be one of the most neglected conditions to exist and I want to try to help change that anyway that I can. I have chronic migraines caused by EDS and frequent slipping neck bones. It is my goal to raise awareness for these diseases anyway I can. I recently started volunteering with @migrainedisorders
to help spread awareness about migraine and give other sufferers hope to keep going even on their worst days. I am honored to be given that opportunity. #chronicmigraine #migraines #thunderbolt #eds #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #fibromyalgia #chronicfatiguesyndrome #chronicpain #chronicillnees #hypermobility #advocacy #awareness
I've been feeling pretty down the last few days. Being sick gets to you. Sometimes it feels like it's all too much. There are days when I get stuck in my head thinking I don't want this to be my life. It is though, this is my reality and most of the time I can handle it. Today was not one of those days.
I miss working, feeling productive, earning money. The ability to work more if I need money. I miss doing whatever I want and not having pain. I miss not being exhausted all the time. I miss being able to eat whatever I want. Today all of those things caught up with me.
A lot of people don't understand all that we lose. They think "I'd love to not have to work." or "Just take a nap if you're tired." I wish it was that simple. I wish I had enough money to not still need so many things. I wish I could take a nap and not be as as tired when I get up. Thist is not my reality, I don't think it ever will be and that just sucks. So I took a walk to clear my head and have some quiet time to just feel. I like sitting here and it helps a small amount. I need to do it more. For now I'm still in a funk. Someone told me "You always come out of it." I do, and I will, but for now I'm going to let myself be sad. #eds #ehlersdanlos #ehlersdanlossyndrome
#lifetimepatient #chronicillness #tiredaf
I’ve recently gotten several new followers, and I realized I’ve never done this so I thought I’d introduce myself!
I’m Libby, and I run my own blog, Libby Lu Guru. I started this blog to document my life with chronic illness while writing fiction/faith novels for teens. I self-published my first novel, titled Ephesus, on my website a year ago. I’ve taken it down and am currently in the process of editing it. I’m pursuing a bible-theology and youth ministry degree currently! I have been diagnosed with Hypermobile Ehlers Danlos Syndrome, Dysautonomia (still waiting on learning the specific type), ADHD, anxiety, mild insomnia, asthma, and Gastroparesis (I might be forgetting a few)!
I also ride horses, and often post photos of the horses I ride. My primary discipline is Hunter/Jumper, but I have also ridden trails, vaulting (I’m horrible at this one), Dressage, and contesting.
Welcome to my blog, and let me know if you have any questions! I run prayer requests on the weekend, but you can always feel free to DM me if you need prayers. I also run a question of the day on my story, so feel free to answer.
I welcome anyone on this account, regardless of race/gender/sexuality/religion/etc. and want everyone to feel welcome!
#medicalzebra #ehlersdanlossyndrome #chronicillness #chronicpain #spoonie #ehlersdanlos #chronicillnessblogger #invisibleillness #chronicallyill #spoonielife #chronicillnesswarrior #chronicillnessblog #zebrastrong #mentalhealth #dysautonomia #chronicillnessbloggers #hypermobility #gastroparesis #ehlersdanlosawareness #disabled #disability #mentalhealthawareness #spoonies #christianwriter #christianwriters #christianwritersofinstagram #christianblogger #writersofinstagram
No more blood clot! 🎉😁It’s been dissolved- thank you Lovenox injections! My stomach has a lot of scar tissue and bruises 😬 and I will have to continue on stabbing myself in my stomach twice a day for a couple more months (6 total) in case of reoccurrence. There could be left over tiny pieces of the clot that can form together. Basically, since I had a clot before, I’m at higher risk to have it happen again. My leg is still hurting from the scarring but my doctors say it’ll be like that for awhile because of the clot scarring most of the deep tissues in my leg. It was a huge clot. I lost a lot of blood during my last (awful and rare) central line surgery, and it was one of the reasons I had the clot.
DVT is rough so I am grateful to be alive, and very grateful I mentioned the leg pain to my doctor. There was no swelling externally, but she wanted to be sure it wasn’t something serious.
Some things just happen with no meaning behind it. And then there’s obvious spiritual signs- mini miracles throughout life. No one deserves to be sick, bed and house ridden, and dependent on someone or something, especially when you’re young. It sucks and it sucks for the people around you. What they give up and the pain they go through. I don’t have many words for it ... but I think God and my loved ones/angels that have passed on understand all of this and have definitely kept me alive mentally and physically. I’m sad. The pain of having this malfunctioned body- I want a life better than what it currently is. Something more stable. I know mast cell and the other conditions I have aren’t curable. But because of prayers, strength and love, I’m blessed to even have a life at all, with my beautiful husband. Some days I can’t even form a simple sentence and I’m in blinding pain most of the time, so I often question, is it worth it to keep fighting all of the tragic stuff my body goes through? Each time I question, even on the most depressing days, it’s a resounding yes. All I have to do is remember all of the sacrifices made by others and myself, to keep me alive. I can’t give up on them, and I can’t give up on me.
So.... time to poke my belly.
Hello instagram. I haven’t used social media since I was a kid. But lately, i discovered it would be a good idea. I’m familiarising myself with instagram, so please bare with me lol. Firstly if you’ve gotten this far - thankyou for checking out my ig ❤️ or the saving Kay Facebook page, if you’ve come from there. As you probably know, my family have recently set up a go fund me page to try and fundraise my lifesaving surgery, in Barcelona, a neurosurgery that is unfortunately not possible on the NHS on an EDS patient (like myself). It’s been overwhelming. But what’s been most overwhelming is the response. To see each of those individual souls donating to me? The kindest messages, That’s insane. I can hardly wrap my head around it. I’ll be honest, at first I thought no way.. I could never do fundraising. Surely not. I couldn’t ask people for money, how could I possibly do that? I didn’t want to. I really didn’t. I felt, and still do feel, really guilty. It has been so difficult to face the facts, that this wasn’t a choice of mine anymore. It wasn’t an option not to do this. If I want to live, if I want to do what needs to be done. I have to throw my comfort zone out of the window. However challenging it may be... But also something I didn’t expect, Was to feel the most heartwarming sense of kindness, support, care... the way that some wonderful people have reached out and done absolutely incredible things for me, it’s changed my perspective and given me a sense of love and support In a way I didn’t have before. It truly is times like this that true colours are revealed, who comes through, who is really there, some of those may be those you never would have predicted. In a time that feels so incredibly daunting, and isolating, as is the case for so many with chronic illness, not only for me- but my parents. So, having that support means much more than I can tell you. Its a lonely place at times. It’s a dark place at times, let’s be honest. But it sure as hell makes you appreciate the light.
“Today we’re gunna have a quick chat about ambulatory wheelchair users. Did you know that nearly 90% of wheelchair users have at least some function in their legs?! I get a lot of comments of people asking if I'm "better" "cured" or "faking" because they see some pictures of me in a wheelchair and some pictures of me standing. I am an ambulatory wheelchair user which means I can stand up from my chair and walk around a bit. This doesnt mean I'm faking. It doesnt mean im cured, and it certainly doesnt mean im better. My wheelchair is a tool that I use to help my body on a regular basis. It keeps me from being in too much pain and helps my energy levels when I know I'll be out and about for long periods of time. However, I also walk and that doesnt negate the fact that I need my wheelchair most of the time. EDS is a punk to my body yall. It's not a miracle when I stand to reach something on a high shelf (I've had someone yell that at me I kid you not) and I'm not faking when I pick up my chair from my trunk and sit in it (another thing I've been publicly accused of). #AmbulatoryWheelchairUsersExist
I'm tired of asking whoever is in the car with me to get my wheelchair and bring it to the door because I'm afraid of being harassed. I'm tired of assumptions and ignorance. So, this is my PSA: I'm Abby, I use a wheelchair but I can also walk sometimes. it's as simple as that. I shouldn't be scared to be myself in public. Take some time to educate yourself and think about how you perceive those in wheelchairs. Let's change the stigma around ambulatory wheelchair users ♿🤟”- @abby_sams
[Image description: Abby sitting in her wheelchair smiling at the camera. Picture 2: Abby standing smiling at the camera.]
Feeling worthless is very common when you have a chronic illness. Not being able to be your old self can give you the feeling of not being able to keep up and therefore you feel worthless.
Along with fighting our bodies (and sometimes doctors) we have to fight with our emotions.
As of we weren't tired already LoL 🥄🦓🥄🦓🥄🦓🥄 Artist: @thelatestkate
just an update:
school has started. it’s hard on my body. i’m exhausted and feel like i haven’t slept a wink. •
my knees are bad today, it’s 7pm and i’ve popped my knee back in 21 times, shoulder 3-4, and rolled my ankle while setting up my bath. today is a bad EDS day. my stomach has been bad today too. i couldn’t stay at school because i was focused on staying awake and my body hadn’t even woken up yet. it’s crazy. at 6am my body is like you get shakes, weak legs, weak fingers/arms, multiple subluxations, and itchy/hurting lungs with a cough that hurts my throat. it’s hard. •
i’m getting scoped next wednesday and i’m kinda nervous just because they’re putting me to sleep but i’m excited to know what wrong with me so we can fix it, if possible. i’m hoping it’s nothing serious and easy to fix. you can’t get both am i right? 😂
my brain fog is bad today so if this doesn’t make sense i apologize 😂
#chronicillness #ehlersdanlossyndrome #subluxations #zebra #zebrastrong #stripes #mybodysucks #butmypersonality #doesnt
I'm working towards being a better advocate.
I'm a very reserved person, so sharing updates about my health has always been a struggle for me.
This account was started strictly as a medical account, and then drifted to a personal account, and now it's a bit all over the place.
I'm going to continue working on opening myself up and being more candid so that I can do what my heart is telling me to do. (My brain is like NO, GO BACK, DELETE, DELETE, ABORT MISSION)
I want to talk more about my medical conditions.
I have a connective tissue disease. But how does that affect me day to day? What features should prompt an undiagnosed individual to consider Ehlers danlos syndrome?
I want to talk about the medications I take, the symptoms that prompted the doctors prescribing them, the side effects, the benefits. Why? So that a person newly diagnosed with dysautonomia can learn about Florinef or Midodrine.
I want to talk about the medical testing I undergo. I've had multiple GES, ok that's great. But, what is that? What symptoms prompted the doctors to order it?
When a doctor orders a test, I look for other peoples experiences. I want people to be able to come to my account just as I did before I had any experience.
My goal is to open up and educate.
Please, if you have any questions, don't hesitate to ask. .
#spoonie #chronicillness #ehlersdanlossyndrome #dysautonomia #posturalorthostatictachycardiasyndrome #gastroparesis
gave me this zebra mug as a cute gift since I’m #zebrastrong
This flare up has definitely made it harder to handle my depression, but it’s little things like this that remind me why I keep fighting! I’m a chronic illness warrior 💪🏻 and I can get through this!