Long story short, today I went to the doctor's without expectations. I usually leave most doctor's appointments in tears because usually they say they can't help me because my condition is so rare or they dismiss me based on assumptions that they make because I'm overweight and because I suffer from anxiety and depression.
I am soooooooooo grateful I went in without expectations for this particular appointment because it turned out wayyyyyyyyyy different than any other appointment. All of my symptoms were dismissed and attributed to being "super obese". I was actually called "super obese" 5 times during the whole appointment. He also looked at my bloodwork and said something along the lines that he was surprised my sugar and other levels in my blood were so good because I was "super obese". I was also told that I weigh significantly more than when I first saw him, which is totally false and I had to correct him. I actually weigh much less than when I first saw him.
Basically I'm glad that I have thick skin and that I'm in fight mode right now. If this would have happened even 6 months ago, it would have broken and crushed my whole soul into a billion pieces. Yes, I know I am considered obese, but he didn't have to use that as a cop out because he couldn't figure my issues out. Plus I'm still confused as to why my symptoms started when I was at my lowest adult weight ever, since he said almost every symptom was due to me being "super obese" (He couldn't answer that question btw)
So basically he fat shamed me, talked down to me, and was trying to make it sound like most of my symptoms were all in my head. No wonder overweight people don't want to go to the doctors and die/get misdiagnosed/deteriorate because doctor's want to attribute everything to BMI and weight. This is such a dangerous and disgusting practice. Doctor's who do this kind of stuff need to wake up! They need to realize that weight is not the only tool to measure someone's health. They need to look at the many other factors and stop assuming!
Anyway, in conclusion this won't break me! I'm strong, I have a plan of action, and I'm not giving up 💪🏼.
“If you forgot it, it must not have been that important.”
“HAH. Buddy, pal... you underestimate the power of my forgetfulness.” 😩😩😩😩
I have no ideas who, where or what the fuck is going on EVER!!! #brainfog #thisischronicillness
The last few days I’ve had pain worse than I’ve experienced in quite a while. The kind of pain that makes you leak helpless tears. Last night my mobility was so compromised that I was having to use the walls to prop myself up on the way to the bathroom. That was kind of eye-opening, and makes me think some kind of mobility aid may be in my near future.
But tonight around 7 PM the pain lessened significantly (why? who knows! life’s a mystery!), and I felt myself start to smile again. And now I’m laying in bed after staying up too late knitting and enjoying my 3-4 pain scale, and dammit if I am not feeling super impressed with myself. I keep a five year journal where I write a short paragraph about my day every night before bed. I was just doing that and thought “how sad that so many of my entries are about my pain.” And then I thought, no, actually, it’s not sad. Because I’m recording all the shit I’ve gotten through and goshdarnit I have GOTTEN THROUGH SOME SHIT. I am one badass mammajamma. I go through pain that would make a healthy person call an ambulance, and I do it over and over again. I’ve lived with some level of chronic pain almost every day for four years. That is not something to sneeze at.
So you’ll excuse me if I take tonight to pat myself on the back. And I encourage you to do the same, because dammit if we aren’t some fierce folks.
We are warriors. Hear us roar.
[image description: Eliza is laying in bed with her head on the pillow, wearing glasses.]
#ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick
Spending my evening watching Live PD and giving myself a mental break. This afternoon I went to get my glasses prescription updated. We found out in February that my vision is decreasing at an abnormal speed. After some further testing we've learned that my dysautonomia isnt just causing my pots its also causing vision loss. So now, I'm having to go about every 6 months and get new glasses. I got my current glasses in February, and at this appointment I needed a glasses prescription that's almost 2x stronger. She helped get me a referral to an opthalmologist to follow my case to keep a close eye on my eye health, and my neurologist is still trying to connect dots and see what we can do to slow the progression. I'm blessed to have doctors who care and respond to things quickly when needed. Having 💩 vision isn't the end of the world and I've still got a long way until my vision is at a scary level. So I'm going too eat an oreo and call it a night. ❤
1. I was born with an extremely rare form of an already extremely rare inherited disease called Hereditary Progressive Arthro-Ophthalmodystrophy. This disorder typically affects around 1/100,000 but the form I have is less than 1/1,000,000. I've had this disease for my entire life but I only found out a couple of months ago. HPAOD is a connective tissue disorder that affects the way my body produces collagen, and collagen is a glue that hold your body together. Because of this, my joints dislocate easily, and I'm at risk for going deaf and losing my sight as well as heart problems too. I also have additional multiple other diagnosis because of this condition which include Postural Orthostatic Tachycardia Syndrome, Congenital Prosopagnosia, Interstitial Cystitis, Fibromyalgia, early onset Arthritis, IBS and issues with my Gastrointestinal system.
2. I don't do much each day really, currently as its summer break and I'm still in highschool due to a complication that caused me to miss a year and a half of schooling. Currently my day consists of doing small chores around the house and watching tv and looking at memes on my phone lol
3. The biggest misconception about my disorder is that most people with it typically don't have it as severe as I do, plus the fact that the most common types require one parent to pass the defective gene on to their children, but in my case, both of my parents (who aren't affected) have the defective gene that they passed on to me.
4. I have learned that its okay for me to not do things if I'm not feeling well enough to do them, and that I have to be happy with the things that I can still do.
5. You aren't the only one experiencing these issues even though it may feel like it, there are other people out there who have gone through what you're going through, and if your lucky you lgbt even be able to connect with them and share your experiences. Plus (and I know how cliché this sounds) but it does get better. @cronchybones
Collapsed veins and kissing the floor makes for some pretty nasty #battlewounds
. Today I made it out to dinner with my family and even managed to put some makeup on.🤗 I felt really proud of myself, only to end the evening with palpitations and fainting multiple times in the short time span it took to get to the car. I had a saline infusion today so I don’t understand what triggered such an episode .😬 I’m scared this means my medication and infusions aren’t doing their job. I’m trying not to get too discouraged at the moment, and instead am trying to focus on the fact that I even made it out of the house in the first place; especially considering the flare my body has been experiencing. If anyone has similar issues regarding the saline infusions, any feedback is welcomed ! Also feel free to dm me if you feel more comfortable, I’d really appreciate it.😊
I finally got to go to @magnolia
this weekend. I was so excited and couldn’t wait to shop and enjoy the moment.
But while I am smiling in this picture, it is pretty faked. At that moment I began to suffer from a severe migraine. I used to get these frequently, but over the years they slowed down and became almost nonexistent.
So here I am at a moment and place I had been waiting for and I am bordering on being miserable. Shortly after this picture was taken, we left empty handed and I don’t even remember what I looked at or what the experience was.
Why am I sharing this with you? Well really it is because I want you to take a moment and look at what you see versus what is really happening. Pictures only show a small portion of what is happening. Remember that when you are looking at someone else’s life, you don’t know what other pains (physical, mental, or emotional) that they are experiencing.
If you took the time to read this whole thing, then I applaud you.
I feel like I have this conversation often. I will not allow my pain and my struggle with Crohn’s disease to make me a victim.
It’s just not who I am as a person. I am a fighter, I am a warrior, I am a conquerer. •
I believe in looking at the positives and not dwelling on the negatives. I believe that even if I can help one person on their journey that I am doing what I’m meant to do.
I had someone who suffered greatly from Crohn’s disease who walked by my side and guided me every step of the way during my initial diagnosis and treatment. I wasn’t scared because she helped t all become familiar. And I am thankful for that. Shelby was and will always be my hero. Now I want my battle to make me someone else’s hero as Shelby was for me 💜 her memory will continue on through my actions. I miss you cuz 💜 •
#butyoudontlooksick #crohnsdisease #crohns #crohnswarrior #invisibleillness #crohnsandcolitis #girlswholift #strongisthenewskinny #powerlifting #strong #positivevibes #gaurdianangel
Bonus drawing for the day! Started this one in the waiting room for my new pcp - side note, my new doctor is awesome! I asked about renewing my disability parking pass (which has always been a temporary, six month pass) and she said, “well, let’s just give you a permanent one. It’s not like any of these issues are gonna disappear.” It’s SO incredibly validating when a doctor gets you what you need without forcing you to justify or jump through hoops for it! Anyway, as I was scrolling through all my social media platforms, searching for reference photos, I found myself getting increasingly irritated and triggered by horrible comments I was seeing under some of my friend’s posts (not BY my friends, but some of their acquaintances). It was the same horrifying, tired victim blaming bullshit. “If a woman was REALLY assaulted, she would have reported it!” 😒😡🤮. I had the impulse to respond. To say all the things I didn’t say when I was 11, had been assaulted and did not report it - for all of the valid and very common reasons people don’t report. Or to scream and curse as I did throughout the four years I suffered with my abusive ex - and STILL did not report it, for all those same valid reasons, with some more sprinkled in. But I refrained. I know that will not help me. So instead, I found this model, perfectly expressing my feelings about that level of ignorance. Pretty tired of this bullshit argument.
“How do I continue to eat well even when life gets crazy!??”
Understand, that it’s much less about the food than you think!
We focus SO much on what we think we CAN’T have & let that distract us from getting underneath the hood, really looking at what is prompting our food choices!
It’s not about the food itself, it’s about the connection you have to it & how it will make you feel!
How do you begin to sever those ties!
💥What if there was something else that I could do right now that would make me feel even better than this craving! What is it masking?
💥Are the negative affects from this food going to last well beyond this situation that will eventually pass?
Restrictive eating is a clear cut indicator that there are other areas of our life that are yearning for our attention.
Find out where that soul gap is so that you can remain full, enjoying your food and not needing to overcompensate with it!
Improvement at ANYTHING is based off thousands of little failures 👋🏽🤭 •
When we become scared of failure, we become stagnant. BARF. 🤢 (Who WANTS to feel like that?? If you do... well unfollow me 😂🤪🙌🏽) We stop fighting to be better. We are “Fine” with being “Fine.” Then we die. 😳🙊 #realtalk
I want you to feel like a freaking beautiful human inside and out!!! 🐛🦋😏🦄🌈✨ BUT you need to be want it for yourself too... DUH. •
Only 8 spots left in my October Challenge group ladies!! #jeansdontlie
Link in Bio 😘✨💕👭📲
Julius Sumner was super chill at the vet. Seriously what rabbit chills like this in the waiting room? 😂💜🐇
True partners in crime. Introducing our fifth and final contributor, @the__drop
(and his amazing Diabetic Alert Dog, Forrest!) Since receiving his Type 1 Diabetes diagnosis as a teenager, Matt has done incredible work for the Type 1 community. He’s a Global Ambassador for @beyondtype1
and is an avid traveler, helping teach people how to take care of themselves while living the life they dream of.
"I’ve died a thousand deaths, each time reinventing myself brighter, stronger, and purer than before. From the midst of destruction, I became the creator of myself. From the midst of darkness, I became my own source of light."
~ Cristen Rodgers 🖤
The inclusion of disability in the SDGs is a powerful tool for people with disabilities to use as they raise their concerns with their own governments, and work in partnership together to deliver progress.
[Image Description: in black text on a white background, “The inclusion of disability in the SDGs is a powerful tool for people with disabilities to use as they raise their concerns with their own governments, and work in partnership together to deliver progress. - Sightsavers” At the bottom, centered in block text #diversability
and the Diversability logo in black.]
this is NOT a transformation photo! 🙇🏻♀️ it’s simply me at home, in my pjs, hooked up to iv fluids, with crazy voluminous dry shampoo hair.. versus me out in public, in my normal athleisure, untethered, with clean hair.. just a few hours later!
do i look more healthy in one photo than the other? more happy? more “normal?” because i feel exactly the same in both. 💁🏻♀️
i just want to reiterate that looks can be deceiving. not all illnesses are visible! and you never know what a person is going through anyway 🙏🏻💗 so always be patient and kind!
ps: these are the new hi-luxe leggings from @k.deer
! they’re my new favorite designated nice leggings (as opposed to ones i actually practice or work out in 😂) - you can get 10% off when you sign up for the k-deer mailing list via the link in my bio! 🎉
#transformationtuesday #invisibleillness #cysticfibrosis #butyoudontlooksick #spoonie #yogapants #leggings #kdeer #affiliate
Let’s talk about how amazing physical therapy is 🙌🏼❤️ mobility has been one of my constant struggles on this MS journey. I’ve been in and out of a wheelchair and have used a wheelchair full time for a year due to mobility issues. With the help of physical therapy and rehabilitation, I relearned to walk like a badass. 💪🏽 But continued work is what I’ve realized is key. I thought my spasticity and gait issues were pretty controlled (narrator: they were not controlled and contributed to a broken ankle 💩). I’ve spent the last 5 weeks rebuilding said ankle; today I started working on the more neurological side and damn, was it an ugly sight. Physical therapy is great not only for enhancing and rehabilitating skills and symptoms but they can also help you with determining what mobility aids work best for your needs. They help make sure they’re fit for you (SO IMPORTANT) and that you’re using them properly. To get a script for physical therapy, ask your neurologist at your next appointment and ask for suggestions for places that are familiar with neurology. 🌻 have you gone to PT? Tell me about your experience!! ❤️ #thisisms
Don’t be ashamed of your story, it will inspire others. ✨👊🏻
It’s truly amazing how it seems as if most of the ostomy community is fitness driven, living a healthy lifestyle. Embracing this life the best they can! Being stronger. Especially since the life before was basically killing us. But when I saw it was possible to come out on top afterwards, I was excited to do the same. Thanks #ostomates
I can’t wait to build my core back up, so I don’t have to worry as much about injury. .
Dolor neuropático. El dolor neuropático se ocasiona por un funcionamiento anormal del sistema nervioso, que confunde estímulos como la temperatura o el tacto como estímulos dolorosos. Se puede decir que es un mal funcionamiento de algunas zonas de nuestro sistema nervioso.
El dolor neuropático produce dolores espontáneos (sin una estimulación detectable) contínuos o constantes, o bien paroxísticos con episodios intermitentes y dolores provocados (alodinia, hiperalgesia, hiperpatía). Los pacientes refieren este tipo de sensaciones al hablar de su dolor:
Descarga eléctrica - rafaga de corriente.Quemazón - calor ardiente, o frío.Hormigueo.Picazón, comezón.Zona dormida, entumecimiento.Pinchazos, agujetas.Tirantez, opresión.Corte, lacerante, incisión, fulgurante.
El dolor neuropático es incapacitante, reduce la movilidad y muchas veces puede ser el infierno mismo. Si alguien te dice que sufre este y otros dolores crónicos ofrece ayuda en tareas mecánicas y sobre todo, pero sobre todo no juzgues lo que no logras ver ni entender.
#notodaslasdiscapacidadessonvisibles #dolorneuropatico #neuropathicpain #dolorcronico #chronicpain #fibromialgia #fibromyalgia #mecfs #millionsmissing #chronicbadass #activism #noestassolo #yoteentiendo #canyouseemenow #spoonie #butyoudontlooksick #notevesenferma #inclusion
CLC MEMBER FEATURES: Hi everyone! My name is Laura, I'm 28 years old and currently live in Toronto, Canada. When I was twelve years old I was diagnosed with epilepsy. The first seizure I ever had was at school in my grade seven class (to say people were scared is an understatement). Since then I've had about 20-30 seizures, mostly due to changing medication or having to get off my current medication because of a shortage. Tonic clonic seizures to me are pretty terrifying; they give me no warning and I lose consciousness, wake up confused, on the floor, nauseous, with a headache and sore muscles. They have given me bruises, cuts, concussions, and a bloody tongue.
I thankfully take medication which controls my seizures and have been stable for the past two years. However, this medication gives me a list of side-effects. It affected my hormones and caused me to be diagnosed with PCOS, and later on with HA, or hypothalamic amenorrhea, meaning I didn't get my period for years. I found the medical system to be pretty disappointing in supporting me through this chronic illness, so I began to advocate for myself. I studied holistic nutrition and became a nutritionist in 2016! Through diet, lifestyle changes, supplements, and other alternative treatments like acupuncture and laser therapy, I found my health was benefited greatly (I even reversed my PCOS and got my period back!).
I now help others to improve their health through diet, lifestyle, and supplements, treating people from a holistic approach. I'm grateful that I have been able to turn my condition which has caused me so much pain, into a learning and growing experience, and that now I have knowledge to help others as well. It has brought meaning and purpose into my life, specially during the rough days of navigating my chronic illness.
In honor of childhood cancer awareness month, I am proud to present to you this #GetThePiccture
feature by Kezia, the founder of @carealineproducts
. Because photos often wield a unique propensity for storytelling that words fail to convey, this feature will primarily unfold visually. I will add that Kezia and her daughter Saoirse were both diagnosed with cancer in 2011. Her daughter's treatment challenges with chemotherapy spurred the innovation of the unique CareALine products I've had the opportunity to share with you all. As I reflect about this dynamic mother-daughter duo, I also take a few minutes to feel the intense emotions about the multitudes of children like Saoirse who have passed away in pursuit of saving their lives. Thank you Kezia for you willingness to share with us your story, your passion and incredible dedication to supporting those of us with central lines.
send funny dog videos please. So much pain and nothing else to focus on!!! 🐾