My grandparents still not understanding my disability after five years bothers me way more than it should. They’re making day to day living so much harder and I’m so done. #Epilepsy #PosturalOrthostaticTachycardiaSyndrome #WheelchairUser #Disabled #severeanxiety #Anxiety #ObsessiveCompulsiveDisorder #ChronicDepression #ChronicMigraines #fml
I wish Dr. Patel could experience one of my bad pain days. He literally did not give two shits about how much his decision mattered to me.
I've been slowly figuring out the source of my chronic pain for the last year. One of the contributing factors is a herniated disc. I've tried all conservative treatment methods and was finally ready to discuss surgery.
This guy dismissed me because my MRI doesn't match my symptoms. The disc is bulging in the middle and not impacting the nerves on the imaging. The last doctor I saw diagnosed neurogenic claudication in my legs, which explains a lot of my symptoms. Yet Dr. Patel wouldn't even consider surgery. Instead he asked about my A1C and weight. He was my absolute last hope for fixing my back and regaining a little bit of my mobility. Instead, I am facing a future in my wheelchair. If the condition progresses further there could be severe nerve damage. So you know what, fuck you, Dr. Viral Patel. I hope you lose sleep over this decision.
My first wheelchair arrived today and I'm so thrilled. I want to scream it into the world, because it will make my life so much easier and means less pain. I just wanted to share this #happymoment 🤩
#Wheelchair #AmbulatoryWheelchairUser #WheelchairUser #happy #Disabled #Disability #ChronicIllness #chronicallyill #ChronicPain #teenager #disabledteenager
So I've finally gotten a good gp, they listen and they believe CMT could be a real possibility. I also have EDS and my mobility is really effected. I use a wheelchair outside and a stick inside, now going to a crutch. I just want to know if it's CMT. I have so many symptoms and they are getting worse while many scratch their heads. I've been told by a neurologist is not MS but your reflexes are bad, drop foot, weakness, feeling like water is trickling down my legs and hands, pain and cramps and tremors. I love art but my hands are getting worse. I just needed to vent really. I hope they work it out but I know at 26 my life mobility wise isn't getting better and won't, whether it's CMT & EDS or just EDS... #EDS #CharcotMarieToothDisease #CMT #MOBILITYISSUE #Wheelchair #WheelchairUser #tired
A while ago I read here something about medical gaslighting. When professionals tell you that your symptoms are not medical/physical and don't believe what you tell them is true. And I'm looking for the opinions of other people here at The Mighty.
I've been #chronicallyill since 2007. It started with pain in my back, and then #Fibromyalgia , #ChronicPain and #Fatigue . I live in The Netherlands and found out in Germany that I had the #LymeDisease . My GP (doctor) back then didn't believe me, and said that Lyme couldn't give me these symptoms.
Fastforward to 2020, I've got a lot of labels, and my body started to hurt like hell, so my legs sometimes just stopped working. I went to the Neurologist, but he couldn't find any physical reason for that to happen. I got the diagnosis#FunctionalNeurologicalDisorder , which basiccally means: you've got neurological symptoms, but we don't know what caused it. And the diagnosis #MyalgicEncephalomyelitis , Chronic Pain takes a lot of energy out of me. I've been to physiotherapists and went through a lot of psychotherapy, and got some psychological labels too. I know that I have to take breaks, I know I have to talk about my feelings with my friends. They taught me that excersising or moving my body can't hurt. And all medical specialists told me that the Lyme Disease can't be present, because I had it treated twice.
Now it's the end of 2021, I'll turn 33 soon, and I'm a frequent #WheelchairUser . I can walk small distances, but I have to think about 'how' I take my next step, and that costs a lot of energy. I got new painkillers, but the sharp pain gets right through.
I got all the help I could get from my Uni, where I graduated in 2008, from friends and the municipallity, who got me my (Quicky Helium) wheelchair 5 months ago.
Last week I had a good talk to my awesome GP. She said that she doesn't know how to help me (very honest, I like that), and asked me if I had any more ideas. And if I had the idea that there was any unexplored route. I answerd that I think this is it, but that I really want to find a good pain-management strategy. And I was thinking: all those specialists I saw the last 14 years, all those people who came up with diseases that you can't easily pin down. The specialists who told me I have to live with this, and have to accept it. They all planted a seed in my head that this Chronical illness, that they can't pin down, won't kill me, won't break me down and is something I can grow old with. But is that true, because at the moment every month I can do less things than the month before.
I just realized I might have been Medically gaslighted. I'm the glass is always half full kind of guy, but where do I start from here with my helpful and awesome GP?
So I am in my early twenties and have had a lot of undiagnosed chronic illness lately. The most recent thing I learned was that I am needing hearing aids. I go for a fitting on Tuesday. I have struggled this last year to accept needing assistance and health aids. I went from only needing a cane on occasion to needing to use a wheelchair constantly. Adding the hearing loss and needing hearing aids has me feeling broken. I had a person joke that I am becoming blind, deaf, and dumb (used in place of the r slur). This all really has been defeating me since I am trying to finish college with all of this. I don’t know how to navigate all of this and I’m very overwhelmed. #Disability #ChronicPain #Undiagnosed #HearingLoss #HearingAids #WheelchairUser
I'm having major issues with EDS and my entire GI system! With esophageal spasms to vomiting and diarrhea. I've lost 30+ lbs in 3 weeks. So with all of that, I haven't been able to take my meds like I should. Especially my meds for bipolar disorder/depression and GAD. It has taken a toll on some of my relationships. One in particular I know for sure I totally fucked up and I feel horrible about it. When your body is physically broken, so is your brain. My brain has been broken for some time and I was getting better until this situation with my GI system. I feel like I'm in such a dark place right now. I mean hell, all of us maybe feeling the same. 2020 has been one giant rollercoaster full of crazy twists and turns. Yet I'm struggling really bad right now. Struggling with not listening to the crazy thoughts in my head. I'm struggling with not getting the nutrients I need to stay health and alive. I have an esophagus that's closing by the day and a stomach that hates me with a passion. What I have been trying to avoid, I can't anymore and that's a feeding tube. I know it could help the quality of my life yet the fear of something going wrong scares me a lot. What do you do when you don't know what to do?! Who knows 🤷🏾♀️... just keep breathing I guess! Keep fighting...
Ana ♿🦓🙏🏾💪🏾
#EhlersDanlosSyndrome #LifeofanEDSerwomanofcolor #BipolarDepression #WheelchairUser #Depression #FeedingTubes #Anxiety #keepfighting
Hey Lovely Mighties! So, yesterday I decided to get out into the sun, I hadn't been outdoors in about 2 weeks, it was great. As you can see I was masked up, I'm not playing with CoVid. Anyhow, my chair loves me and I swear I'm working on loving it. Not quite there yet, but that's okay. 🤷🏾♀️ I'm sure I’ll get there. Gotta write me up an affirmation for that. I'm thinking about adding some sort of decor to it. What y'all think? Should I bedazzle this thang? As always, sending you light and love 💕
#WheelchairUser #CheckInWithMe
Cue dramatic music!
Still don’t understand and are stumped by so much but still so much that isn’t diagnosed yet! Labels! Helpful labels at least! #IrritableBowelSyndromeIBS #Anxiety #MedicalMystery #Bipolar2 #ChronicFatigue #ChronicPain #Fibromyaliga #Dysautonomia #PTSD #WheelchairUser #Meme
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