Off To Neverland @dreamsonlylast - Tumblr Blog

On night 3 of my ankles itching uncontrollably no matter what I do and still no idea as to why it’s happening. I have scratches on both of my inner ankles and just can’t find relief. On top of that my head has been killing me all day and my headaches are giving me awful nauseous feelings the past couple days. Tomorrow is supposed to be rainy so we’ll see how my body handles that again

#hypermobile eds #postural orthostatic tachycardia syndrome #chronic pain #chronically ill #ehlers danlos syndrome #hypermobile ehlers danlos #hypermobile joints #invisibledisabilities #pots #invisible illness

I don’t know if it’s the weather or my body just falling apart but my arms and legs have been in so much pain lately. More so than usual. Maybe my body just knows it’s almost May and it wants to act out for EDS awareness month

#ehlers danlos #hypermobile ehlers danlos #ehlers danlos problems #hypermobile eds #hypermobile joints #joint problems #invisible illness #invisibledisabilities

The weird sharp pain I was getting in my calf a few months ago has magically returned so there’s that. Still don’t know what it means. It was mentioned to my doctor when it first started but, like everything else wrong with my body, they ignored it. We’ll see how long it lasts this time

#invisibledisabilities #hypermobile eds #hypermobile joints #joint problems #joint hypermobility #chronic illness #chronic pain #invisible illness #chronically ill #not growing pains #ehlers danlos #ehlers danlos syndrome

My plan after showering: start working on a sewing project aka making my own masks.

What I’m actually doing: laying on my bed to recover from taking a shower. Even though I took a shower while sitting down.

#ehlers danlos #hypermobile ehlers danlos #postural orthostatic tachycardia syndrome #pots #tachycardia #invisible illness #chronic illness #chronically ill

Do I wear my knee brace tomorrow and risk it being sweaty & itchy on the back of my knee? Do I not wear my brace and risk my knee/legs hurting for ~9 hours? Do I switch braces and wear the one with more coverage just so it doesn’t rub the back of my knee but still risks possibly being sweatier than the first smaller brace??? Stay tuned to tomorrow’s episode of wtf am I doing with my life??

#spoonie #hypermobile ehlers danlos #pots #ehlers danlos syndrome #ehlers danlos #joint hypermobility #hypermobile eds #chronic illness #chronic pain #invisible illness #invisibledisabilities #mobility aid

Great news! My dr sent over a different prescription. Instead of paying over $600 my insurance covers it and now I only have to pay $524 cool. Coool greaaaat. Soo uhhh I’ll just deal with the constant stomach pain and digestive issues then. Awesome. Great.

#invisibledisabilities #hypermobile joints #hypermobile eds #ehlers danlos #hypermobile ehlers danlos #gastroparesis #invisible illness

It’s always nice when insurance decides they don’t want to cover a medication that is literally helping to better your overall health everyday and the doctors office is impossible to get a hold of to see if there’s an alternative.

#chronically ill #hypermobile ehlers danlos #hypermobile joints #ehlers danlos syndrome #gastroparesis #invisible illness

Well my doctor has pretty much officially given the diagnosis of Gastroparesis. So there’s that. He said that even though my emptying study came back “within normal limits” because of what my endoscopy showed with my stomach being full of liquid there are clear signs of gastroparesis. Just add that to all of the list of things that I have wrong with body that are connected with EDS

#chronically ill #hypermobile joints #hypermobile eds #ehlers danlos syndrome #pots #gastroparesis #postural orthostatic tachycardia syndrome #invisible illness

I cannot wait to finally get this MRI tomorrow so I can hopefully figure out if there’s actually something up there causing these intense headaches/neck pains. Only problem is I went through my specialist who diagnosed EDS instead of my pcp because she was giving me a hard time. She eventually wrote up what I think was the correct script but I haven’t been able to pick it up. My specialist faxed their script over so I scheduled with there’s instead 🤷🏼‍♀️.

#ehlers danlos syndrome #hypermobile joints #spoonie #hypermobile eds #chronic pain #hypermobile ehlers danlos #chronic headaches #headache #ehlers danlos

The most annoying thing about a hiatal hernia is from what I read I’m not supposed to lay down for 3-4 hours after eating. Which is difficult when your a couch potato and basically always laying down in some way, even if not fully, after eating. Just let me be comfy!

#hiatal hernia #ehlers danlos #hypermobile eds #ehlers danlos syndrome

Colonoscopy/endoscopy went well yesterday. I was told I have gastritis & hiatal hernia. They also mentioned a tortuous colon which seems to be just a fancy word for one that is longer than it should be resulting in more turns than normal. They also asked when the last time I had anything to drink was because there was still stuff in my stomach even though I hadn’t drank anything since 11pm the night before. The nurses were awesome and asked a bunch of questions about EDS and how I was diagnosed.

Today I’m stuck at the hospital to do a gastric emptying test. I’ve had 2 scans so far, one that was immediately after eating. They gave oatmeal instead of eggs. My stomach started hurting by the 4th or 5th bite but I managed to finish it and I still feel like I have it sitting in my throat over 2 hours later. One more scan and they’ll review it and decide if I need the 2 more.

#ehlers danlos problems #invisibledisabilities #potsie #postural orthostatic tachycardia syndrome #chronic illness #ehlers danlos syndrome #chronic pain #stomach pain #digestive #joint hypermobility #hypermobile joints #hypermobile eds

Y’all wish me luck. I start colonoscopy prep tomorrow so get ready for a miserable day. Clear liquid diet all morning & I start suprep at 2pm. Hoping my POTs symptoms don’t act up too horribly with not being able to eat at all until at least after 9am on Tuesday.

#ehlers danlos syndrome #invisibledisabilities #hypermobile eds #pots #hypermobile joints #tachycardia #spoonie #potsie #postural orthostatic tachycardia syndrome #colonoscopy #endoscopy

Went to see the used last night for the first time finally. The show was great but something was triggering a whole bunch of dizziness and vertigo. I’m not sure if it’s because I’ve been off midodrine for a few days bc my pharmacy was giving me a hard time or if it was something else triggering it. I couldn’t look at the lights when they were flashy and couldn’t look down to grab my phone to take any pictures without feeling dizzy. Every time people would be jumping I felt pretty unsteady. But the thing is I didn’t want to ruin it for my sister by having to leave our spot or leave in general (we weren’t squished into the crowd or anything). My body definitely felt like it was working overtime to stay upright though.

#ehlers danlos syndrome #ehlers danlos problems #chronically ill #hypermobile joints #chronic pain #pots #hypermobile ehlers danlos #postural orthostatic tachycardia syndrome #tachycardia #potsie

Do you ever feel like as soon as you talk about symptoms you’ve been having they suddenly go dormant or at least slightly dormant. I’ve been having the worst stomach pains pretty consistently after every meal for the past year and now that I’m finally getting tested for all this stuff it’s calmed down a little. I would honestly rather be going through a flare up during these tests!

#chronically ill #chronic illness #invisibledisabilities #invisible illness #ehlers danlos problems #hypermobile ehlers danlos #ehlers danlos syndrome

I honestly can’t wait to get all these tests done that my GI doctor has ordered. I’m sooo tired of the stomach pains and nausea soon after eating no matter what I eat. The constipation one minute and diarrhea the next is just so uncomfortable. It makes me not want to eat and as someone who is 6 years recovered from an eating disorder not eating is really not an option. It took me so long to be able to enjoy food again and it feels like these stomach issues are trying to take that away from me all over again.

#invisibledisabilities #chronic illness #chronic pain #invisible illness #stomach pain #digestion #ehlers danlos problems #hypermobile ehlers danlos #ehlers danlos syndrome #ehlers danlos

1/31/20

Went to my first GI appointment and left as the lucky winner of....multiple tests including a colonoscopy and endoscopy scheduled for the same day (hooray🙄). I was pleasantly surprised that this doctor knew about EDS and right away went into explaining some of the things that people with EDS can be experiencing. I had no idea when I made the appointment whether he’d have any knowledge about it. Happy to know I’m on the path to figuring out what may be causing my symptoms with my digestive system.

#chronically ill #invisible illness #chronic illness #hypermobile eds #ehlers danlos #ehlers danlos problems #potsie #postural orthostatic tachycardia syndrome #chronic pain #joint hypermobility #hypermobile ehlers danlos

1/26/20

Let’s play a game called where’d ya get that bruise!?

You can’t tell from this picture but both knees are bruised...from doing the elliptical Thursday and my leggings rubbing against my knees everytime I bend them.

#chronically ill #ehlers danlos problems #brusies #hypermobile ehlers danlos #hypermobile joints #hypermobile eds

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