#feeding tube
The Doozer, “Winning” official video [Feeding Tube, 2018]
My YouTube upload from last week. I’m both a wheelchair user and I receive all essential nutrition via a feeding tube that runs into my intestines. This doesn’t mean I can’t still enjoy the normal pleasures of life, sometimes it just means adaptations, and smaller amounts of said pleasures than is considered ‘normal’.
This is a painting my friend Mandy painted of me from a self portrait during a hospital stay just over a year ago. While a hospital stay isn’t necessarily a normal part of life for most people, Mandy reposted it to bring awareness to the DisabilityIsNormal project.
I strongly believe it should be normal for disabled people to be depicted in all forms of art and media. While my personal opinions on what constitutes ‘normal’ are complicated and I don’t believe we should have to strive to be ‘normal’, I <b>do</b> think that disability should be (and is) a normal part of life for everyone in the world.
This will only be acknowledged and true when everyone stops ignoring disability. With movements like #SayTheWord, #DisabilityIsNormal and the various campaigns to get real, honest disability representation in the media, we will get there.
My soul felt this as I was reading it. It is exactly how I feel deeply about life right now. I don’t wish it on no one.
Ana ♿
My life feels very heavy as we speak. I just went through a hyper mania episode about a week ago. I now feel the blows of depression and anxiety hit me now. I feel horrible once I realize what I have done during the time of being in the hyper mania state. With my health constantly changing, it totally can affect the brain and mental health. I’m still having issues with my feeding tube, which is beyond my control. I wanna control everything. It isn’t place to do so. I know it is dark right now, but I hope to start seeing the light at the end of the tunnel really soon. Keep fighting!
Ana ♿
I may look like I’m adjusting well to this #tubielife but I’m struggling. I’m struggling with actually understanding how I can’t eat like normal anymore. It has been a sad few days for me because of it. I live in a Caribbean family household and to smell the foods I love so much have been really triggering. I know just trying a little bit would cause dysphagia and who wants to choke on their favorite food?! Not me. I definitely don’t miss the vomiting either. Yet it is a grieving process. My wardrobe is changing because my stoma doesn’t like to be covered and hidden. It gets very slimy and icky wearing a long tshirt over it. Crop tops have the saving grace for me yet I was a little embarrassed about showing my tube. But it is what’s keeping me alive so why hide it?! Why hide being me and comfortable in my own skin because I have a feeding tube. I had to remind myself that having one doesn’t define me nor should change how I feel about myself physically. I’m learning to love my body even through the changes. These changes have been very drastic, yet again it is what’s keeping me alive. I bought some new crop tops a couple of weeks ago. I took these photos a few days ago and I am being to transparent right now, I was nervous to post them. I felt like people would judge me and then I realized I was judging myself by thinking and allow what others may feel and or say. So I’m learning to celebrate this beautiful shell that is constant changing and evolving every day! Learning to love the skin you are in isn’t easy as a person with multiple disabilities, so I take it day by day and moment by moment. I’m proud of where I am right now and I know the more baby steps I make, the more rewarding it will be! Keep fighting!
Ana
♿
Story of my life
I know I have been MIA lately. I’ve been having a lot of health challenges. Not only do I have EDS but I also have gastroparesis. My battle with gastroparesis has been very hard. I was in the hospital for a week and surgery to have a pegj/gj tube placement. I was vomiting so much, I was even vomiting water. It was really bad. It became life or death for me. I’ve been home a week now and my recovery has been very well! Do I miss food?! Not really because I don’t want to have to vomit all day and all night. I have a great imagination so it helps me get through this! As you see at the top that I make my own menus in my head of what I maybe craving. It is fun and keeps me positive about my new journey. I’m grateful for life and to still be here with my family! So that’s my update! I definitely will be back to writing more blogs here! It is so therapeutic and freeing. Stay safe, wear your masks and please social distance! Keep fighting!!
Ana ❤
Please submit photos, videos, illustrations, visual posts that show your real life, every day experience of the world as a disabled person. Whatever that may be! It can be anything from mundane every day things, your fashion, your selfies, your food habits, the things you enjoy doing, to the adventures you go on, basically anything anyone would ever share about themselves. It doesn’t have to be a 100% positive experience, though, as that is not real life. Any emotion, any experience. I’m interested in presenting what it is like for disabled people to live their lives.
Photos, videos etc. should probably include you, a part of you, or your actual Point of View to be a true depiction of you and your experience. They should also be clear, the subject matter should be recognizable, and relatively interesting to look at (if not downright hilarious commentary on the mundaneness of living life as a human being). If we want this project to make a difference it should be something that all kinds of people want to look at.Let’s burst out of our echo-chamber and refuse to be ignored!
Whatever else, you should be presenting yourself and your experience how YOU want to be presented. This is about both education and empowerment. I’m not here to dictate how you depict your life and what “Disability Is Normal” means for you.
No photos or videos of disabled people that are not you, please, unless it is a group shot that includes you and you are also disabled.
If you know a disabled person who wants their experience to be shared as part of this project please have them submit. If they are not physically able to submit, then please message me with a copy of their explicit consent - this would be either in physical signed form (a photo of a signed note), a video of them consenting, or a voice recording. A simple YES answer to a ‘do you want this to be shared on Disability is Normal’ - a physical nod, or thumbs up etc. is good enough for me if the person is non-verbal.
I want to try and be inclusive as is absolutely possible, but this is a place for us to be represented exactly how we want to be. These are our voices!
This is a project for all disabilities, all genders, all ethnicities, all skills, all lifestyles, all perspectives, all social classes and all disabled experiences. We are numerous, we are everywhere and we WILL be acknowledged <3
Please reblog, follow, boost and tag with your disabilities! Let’s get this off the ground - we can only do this together!
If you’re not disabled, please also consider boosting and following! Posts are queued at no more than 4 per day, will be absolutely personable, real, enlightening and interesting. Some posts may even hit your aesthetic tastes or personal interests! (;
I’ve been busy starting a new YouTube channel (more on that later!). Essentially, a large part of it is wanting to share my experience of the world but also to try and normalize disability! ( https://m.youtube.com/channel/UCnETew92-OPnj4w2S-03a0g)
Which brings me on to my point! I started a new tag! #DisabilityIsNormal I’m going to be using it on YouTube and all platforms I can get my grubby mitts on. Disabled friends, feel free to tag your photos, posts, videos, everything of you doing normal things, just the same as everyone else! Let’s normalize disability together. Let’s show the world we exist, from our own perspective, and we are people just like everyone else! Take up space in the world with me! Let’s make everyone else start to acknowledge that we exist and our experiences are real and valid.
{please don’t remove my words}
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By the end of yesterday’s two hour shoot the muscle weakness I suffer from was manifesting clearly. In my face, in my feet that would not pick up from the floor, in my arms that shook as if 50lb weights were hanging from my wrists. I know I ‘overdid’ it when muscle weakness persists into the next day, as does the unignorable pain that indicates cellular dysfunction. Today I can barely move from where I sit to the bathroom when I need to go. I cannot sit upright without total support of my body, my limbs and my head. I’m unable to separate my arms or hands from my body as I type this; only my fingers themselves are mobile. The searing burn in my upper arms and hands as I haltingly and weakly stab across this tablet’s touch screen keyboard is deemed 'exercise intolerance’ in medical terms. I dislike this term and find it misleading. Most people would describe exercise as a workout, or at the very least a good paced walk for a few miles. But, as with many words, what have one meaning in common lexicon will have another entirely in medicine. 'Exercise intolerance’ is a broad term with much variance in application among disease processes. For me, it relates to the muscular and cellular dysfunction I experience.
Today, just 2-3 chews on soft bread or a hand to my neck to scratch elicits a lactate burn from the pits of hell in the deepest depths of the muscles that are trying to activate. Many will be familiar with a mild form of this burn: usually as a result from running too hard, too long, or really, too much of any intense exercise in too short a period of time. It is, after all, a natural process. Some even pride themselves on this burn; it’s an indication for them that they are working hard. Lactic acid is a byproduct resulting from mitochondrial cells (energy production cells) using alternate forms of fuel when the correct sources are depleted. It is backup processing. This waste product causes pain, but in nearly all human beings this lactic burn will resolve within a couple of minutes to an hour once the exercise is stopped. (Other forms of muscle pain are different and likely a result of small tears, so take longer to resolve).
As long as I’m able to remember I’ve experienced lactate burn from as little as good paced walking, any amount of running, or even any kind of yoga or other mild activity. Now, as my conditions have progressed, the fiery pain manifests from even the simplest of daily activities; brushing my teeth, cooking, walking even 100m, propelling my wheelchair. It can last for days if I don’t get the correct nutrition, hydration, have trouble getting enough oxygen, don’t sleep enough or deplete my energy stores too rapidly or for too long a time. This is the price I pay every day now. Related, but different is the muscle weakness; the only outwardly visible sign that anything is malfunctioning.
I’m utterly exhausted writing this. I have to rest, but I want to thank you all for the supportive comments, the messages, the love. I have a hard time replying consistently for obvious reasons, but I read everything and I thank you. For watching, for reading, for learning, for your support.
{please don’t remove my words}
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Am I a cyborg? An astronaut? A ghostbuster? Pretty sure this means I get to collect backpacks now.
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From the biggest times to the smallest times. {almost}
Weight is a really weird thing… I originally put so much weight on due to medications I had to take, being sick and inactive so much, and after years of struggling to lose much at all I currently can’t stop loosing weight.
We have deep built-in associations with thin=healthy & beautiful. I’ve been trying to get my head around it for months; as I so uncontrollably wasted away.
On the one hand I much prefer how my body looks now (although I am lamenting my lack of boobs again), and I can’t help but wonder if that’s because of what we’re led to believe as a society, or if I do actually just feel more like myself. The weight gain never felt natural or ME; I felt like I was living, trapped, in an alien body for years. I do genuinely feel more like myself.
Once again I’ve debated over and over whether I should publicly speak about this, so having said all of that, it’s still been quite harrowing to not be able to eat enough and just keep loosing weight, no matter how hard you try. I do feel more like myself, my joint pain isn’t quite as bad, but I so wish this could have happened healthily and naturally.
Now, we just hope that having the feeding tube goes smoothly and I can stabilize my weight… My PT and others have said I do not look a healthy weight, and I trust them, so as my strength returns perhaps I’ll gain a little again… Ideally in the form of muscle ((;
*** this was difficult to openly discus so please try and keep that in mind with anything you might have to say. And thank you to the (majority) who are always supportive and wonderful x
{I also apologise for the lack of finesse/clumsiness in my writing these days}
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Self Portrait in recovery.
| After yesterday’s feeding tube change, coming out of sedation. I had to advocate hard, as always. So it is with rare disease. The nurse and doctors did congratulate me when I tried to apologise for any terseness.
EDIT: DO NOT REMOVE MY CAPTIONS ON REBLOGS, DAMMIT. MY WORDS, MY IDENTITY AND MY EXPERIENCE ARE NOT FOR YOU TO EXPLOIT AND REMOVE.Post link
What a torture train this has been.
Sorry I haven’t been around much, tumblr. I need to come back and do some writing and share some photos. My soul hurts.
In the meantime, follow me on Twitter (@cherryrae) or Instagram (@cherryperson).
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I don’t recommend holding a camera (even a small one) with a torn rotator cuff.
{please don’t remove my words}
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34th revolution of the sun complete. still looking more serious than I am.
{please don’t remove my caption}
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It’s world Stroke Day today. Two years ago and one month I had a dissection (rupture) in an artery in my neck. This temporarily cut off blood supply to my brain, similarly to how a blood clot would. Mine is a rarer form of stroke, and my dissection was spontaneous (no trauma) due to the fact that my blood vessels are weakened by my faulty collagen.
This is extremely rare, BUT! That doesn’t mean perfectly normal young people aren’t at risk of strokes too. Strokes aren’t just old people. 25% of strokes are in people under the age of 45. The dissection that happened in my neck, can also happen in perfectly healthy people from trauma (usually weightlifting, moderate car accidents or even chiropractic adjustments). Young people can also suffer from blood clots (the usual cause of stroke in most people).
Know the signs. They’re not always as obvious as the common acronyms proclaim (FAST). In my first stroke I had no one-sided weakness or numbness that I noticed. I DID have vision loss, severe sudden headache, and dizziness (that I get a lot of anyways). I also experienced confusion and a sense of DREAD like I have never felt before. I missed my stroke and so did the ER triage.
I was extremely lucky that my blood flow went back to normal on its own as it was something like 8-9 hours before I got to see a doctor. Don’t let the same happen to you!
My second stroke DID include one sided weakness, but it was extremely brief. Stroke is not always as obvious as you’d expect (as in the more common severe face drooping and speech difficulties). Be aware. Thankfully the ER doctor I finally saw knew right away what was probably going on.
I feel incredibly lucky to be a stroke survivor! ❤️
{please don’t remove my caption!}
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New book from Beavers Pond Press just came back from the printer!
#hotoffthepress #supertubie #feedingtube
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