Stronger Than You Think

I fight my body everyday just to try and find some small semblance of normal. Ehlers-danlos syndrome, Primary Automatic Failure, gastroparesis, FMS, chronic migraines...

[chronicdragonwarrior-blog]

I got the best splints to replace my old ones @Etsy from Lovethebugs. #etsystar

[chronicdragonwarrior-blog]

Feeding tube PSA

Just wanted to post how I have been keeping my tube open and even getting clogs out of my peg-j. Every night before I go to bed I take ⅛ tsp baking soda and mix it with 30cc of water I then draw up 10cc into a syringe and push that into the tube and let it sit while I take my dog out and do my nightly routine, I then flush with water put my meds through the tube and reconnect to my feeding. I'm on 24hr feeds. This clears all the build up off the sides so I don't have to wake up every 3 hrs at night to flush. If I get a clog I do the same except I make it a stronger mixture and try to get as much fluid out of the tube to get the mixture into it. I have to let it sit longer as well but so far I haven't had to use the more expensive clog zapper which my GI and his fellow were completely on board this week with me using at home if I get a blockage. If you have sodium restrictions you really should speak to your doctor before doing the baking soda method. Just thought it might be helpful for someone else out there.

[fibro-larious]

[chronicdragonwarrior-blog]

Fat Shaming

When you post things like "If my fat ass can lose XX pounds anyone can." You are fat shaming. There is nothing wrong with sharing your success but don't make other people feel bad that they aren't or can't lose weight. There are people out there who put on weight because of medications, or are over weight because of medical problems or genetics and can do the same exact thing you are doing and not lose weight.

[chronicdragonwarrior-blog]

Tubie Problems

Ok that’s a new one. Just went to pause my pump to flush the tube. Guess who turned it off to do their nightly anti-clog routine, etc and then hooked back up, even remembered to plug it in but never turned it back on? Seriously?

[chronicdragonwarrior-blog]

Must I?

Picking out clothes to wear use to be fun now it's like "Must I really wear pants to the dentist office?" Nothing fits right anymore and it's a mental challenge plus the energy to actually get ready to go anywhere.

[chronicdragonwarrior-blog]

Yes… Yes I just fell on my head and I’m stone cold sober.

[chronicdragonwarrior-blog]

Show of hands if you have a feeding tube and it hurts.

Tired of people acting like that is unheard of. I have a disease process that involves chronic pain and I’m permanently impaled with a silicone tube that is thicker than a pencil. Hello? No, I feel great. No pain at all. Is that even possible?

[chronicdragonwarrior-blog]

Spoonie Problems

Playing a game on your phone that gives you spoons and wishing you could use them IRL. I have 11 spoons saved up, I can conquer the world. What do you mean I can only use them in game?

[digitalredfrog-blog]

A Turn around of the Chibi base mesh I made yesterday. Hopefully I can rig it and use it to make other characters off of.

[chronicdragonwarrior-blog]

This is my other Tumblr where I mainly post my art stuff and so far most of it has been my 3d digital work although I am a writer, a photographer, painter, sculptor and all around multimedia artist. Feel free to follow it too.

[chronicdragonwarrior-blog]

PT Puppies

I went today to my physical therapist's office even though she isn't currently treating me to catch up on how I'm doing since getting the feeding tube and to take the PT dogs treats. I shouldn't get so excited over seeing them since I have a dog but I do and I miss them. They were very happy to see me even before the treats were brought out. My PT was pretty happy to see me too. I think I used all my spoons today and now I'm nauseous but it was totally worth it.

[creativeronica]

NEWS FLASH: No one is being forced to follow or view Spoonie blogs.

Getting on Tumblr and looking at a bunch of chronic illness blogs is a choice you make. 

If you don’t want to read about our “whining” then politely take your ass somewhere full of cotton candy and rainbows. 

I have no problem with you not looking at my chronic illness/spoonie blog, and neither does anyone else. 

You hate us (spoonies)? Then GTFO. It’s as simple as that.

[chronicdragonwarrior-blog]

me: *pours out entire bottle of pills to find the one half tablet left instead of cutting more* ok but it's easier this way

[creativeronica]

Does anyone randomly get pain in their throat/neck that feels like inflammation, but there is no “raw” feeling like a normal sore throat?

I’d call it a deep ache, and it feels like it’s under the surface of my throat, in the muscle/deeper tissues (inside my neck?), I guess?

It happens seemingly randomly (it’s possible there’s a trigger I haven’t figured out, I guess).

My lymph nodes don’t swell, but I do have mild tenderness in my throat/neck.

I have had this happening at least one day a week (and up to 7 days/week) for almost 3 years. Doctors either have no idea what it is, assume it’s fibro, or don’t care. Can anyone relate or help figure this out?

[chronicdragonwarrior-blog]

I do this and have since I had hashimoto's. I also have FMS and for me I notice it more when I am tired or have pushed myself. Best of luck.

[chronicdragonwarrior-blog]

Insomnia song.

[chronicdragonwarrior-blog]

I literally just said this to a friend: "Most guys have penises it's a thing they need to get over it."

[brokengloss]

you dont need a mobility device to be disabled