#ehlersdanlosgrrrls
#HospitalGlam: Same day, different providers. In the top photo I’d been arguing with techs and staff for 45 minutes before an invasive procedure, and this photo was taken while a tech was staring at me, with the hospital’s legal & corporate departments on the phone. We are always fighting for care, even in vulnerable states. The bottom photo was immediately after that appointment, in another doctor’s office, who gave me test results that weren’t the best but we could meet where we both were emotionally, in this world, right now, and breathe. Every day is hard and weird but there are pockets of hope in the people around us. Let them hold us. //
[#imagedescription: horizontally split image showing me in two separate clinical spaces: in the top one it is me sitting on a gurney in a hospital gown prior to a bilateral breast ultrasound, paying more attention to the speakerphone discussion than the image. In the bottom, I’m sitting on a medical bed in a bright exam room, cross legged in a long black dress, animatedly talking to a doctor, off camera. The mood is very different between the images, as it was between appointments.] /
#chronicillness #disability #disabledandcute #ehlersdanlosgrrrls #selfadvocacy #invisibleillness #survivor
https://www.instagram.com/p/BokKAeqHSWL/?utm_source=ig_tumblr_share&igshid=q4uegdvsrq5o
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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 ♿
Being the “Black Sheep” in the family, this reminds me so much of my family. I’ve been dealing with colorism in my family for some time. Why is that?! I wish I knew the answer. What I do know is that even though they talk hella shit about me, they secretly want my life. How is it that you can bully me, criticize me, body shame and bash me, yet get upset when I choose not to spend time with you?! Please tell me, how does that make any sense!? Our families, I’ve learned that they can be our first bullies in our lives. And when you point it out to them, to them it is “tough love”. That’s not tough love. Let’s be real about what it truly is! It is manipulation, narcissism, jealousy, insecurity and straight out hate that people project onto you because they aren’t happy. I’ve been reading The Four Agreements by Don Miguel Ruiz. The second agreement is to not take things personally because the person who is doing all the negative things is projecting their true feelings towards you. I let what someone says go into one ear and out the other a lot. I refuse to get myself hurt because of others actions, words and energy. Their pain has nothing to do with me. I love my family but I can admit I don’t like a lot of them. I set healthy and safe boundaries to protect myself. I don’t know who this may resonate with. I hope you know that you are great the way you are. Just because your family may treat you in a certain manner, doesn’t mean you are suppose to be ok with it. Set boundaries and if that me separating yourself for a while, then please do so! Please know that You Matter! Keep fighting!
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 ♿
Mood
Ana ♿
I feel so alone when it comes to having EDS. I miss my old life so much. I truly want to be happy again. I’m working hard to figure out what makes me happy as well as how to be happy again. It is a feeling that is foreign to me right now. I honestly can’t recall the last time I have felt truly and pure happiness! I wonder will I ever get that feeling again… The not so great days, fucks with my mental health a lot. My body is doing things that are beyond my control. I just wish for one day of no pain and just a day of pure bliss… I long for it actually. Chasing a feeling that I would do whatever to feel again… Hopefully one day, happiness will find me again. Keep fighting!
Ana ♿
I so resonate with this mantra right now! I’ve been cutting some cords for some time. I know that by doing so, is my form of healing from the past and those past influences in my life. I never regret, yet I never forget the lessons I’ve learned from that time in my life! So I release everything and everyone who doesn’t deserve me nor my energy.
Ana ♿
Everyday is Valentine’s Day! I honor, love and respect this beautiful body I’m in. Self love Valentine’s are the best! I love me some me
Keep Fighting!
Ana ♿
I’m so proud of my curves. Every roll and crease is beautifully crafted. What’s love?! This is
Ana ♿
Self confidence is most definitely the best outfit you can ever wear! I love this beautiful body I was given, and even though there are a few disabilities and flaws; it doesn’t stop me from loving myself.
This is part one of a series of self love as a disable woman which will grow into a complete series of sex and love despite chronic illness and diseases. I will share how you can stay be intimate no matter disability or apparatuses you may for mobility to having a feeding tube like me. I hope you enjoy! I’m having fun creating this series! 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 ❤
#HospitalGlam: The tech and I spoke about procedural stress, and how seeing something from a different perspective, or acknowledging that trauma can be hard to see, can make diagnosis and treatment easier on both doctors and patients.
[#imagedescription: A straight on, waist-up photo of me, sweeping my hair back, in the glass booth seconds before #PulmonaryTesting began.]
#EhlersDanlosGrrrls #InvisibleIllness #Disability #lungs #chronicillness #invisibledisabilities
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Inspired by my friend Kristen on Instagram to do a little #bedrestmodeling. Although, not technically in bed, and as you can see, malnutrition/poor diet is taking its toll on my skin. Really, I just like to annoy the people who irrationally hate selfies and/or sick people who still find courage in their appearance! Bam!
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Android in Space. I’ve finally discovered a way to break the icy exterior of my Internist… Wear awesome space leggings. First time I think I’ve seen him smile. Thanks, Jeffie! Also, my Zak Smith shirt… One of my faves.
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Hey! Welcome to this account, you’re welcome here! Whether you have questions about the condition, questions about treatments, or just need to rant or vent about your condition, feel free to do so! Asks are open and anonymous. Stay strong zebras!
