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#undiagnosedillness

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As Jenna and Rivvah watch, the ambulance drives away with their sister, again. They have seen so much already at what this undiagnosed illness can do. #sisterslove #liverkidsaustralia #undiagnosedillness #ambulance #helpjennaandjayda

on today’s episode of What The Fuck’s Wrong With Jeremy: I now have three new medicines! One for pain and hopefully it does work, one for iron because im anemic (I FUCKING KNEW IT) , and also borderline diabetic, not sure yet but it’s close. and so im also on vitamin d now because that was low.

SO. in three months we are checking again the blood sugar and iron to see where it lies and see where on the diabetic scale i sit. so much is making sense but none of that connects with the lumps and pain throughout my body. im just glad i have more confirmation with my cold problem and everything else. and now i have pain medicine which should help until we get the blood tests back on the main problem.

all in all, good visit. but now there’s more to be done and more treatment to be had.
am i disabled enough for you now, ssi????? #spoonie #disabled #sickkid #ostomate #undiagnosedillness

At least it's kind of sparkly. #undiagnosedillness #stylishcane

Question: how do you guys handle sudden flare ups??
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But Guyssss my GI flare up has started to flare down..... so much less stomach pain and I can eat so much better. The flare ups come and go, and I am so happy when they go! Finally some relief! You have no idea how happy I am right now. 😊 God is good! #cysticfibrosis #illnesswarrior #chronicillnesswarrior #cysticfibrosisawareness #chickswithpiccs #undiagnosedpain #undiagnosed #undiagnosedillness #godsplan #godsgotthis 💜

Some of the best advice I've found thus far, though it's probably a lot easier said than done. Still, I think this this quote is particularly important if you apply to those of us that are dealing with a #chronicillness or #undiagnosedillness because the journey really IS this hard sometimes and I know we could all use a little guidance as to how we can get through it all a little easier.

This weeks post is up! Check it out through the link in my bio or copy and paste below.
https://findingrainbowsinthedark.wordpress.com/2017/06/12/to-google-or-not-to-google/
#blogger #blog #illnessblog #spoonies #spoonie #chronicfatigue #chronicillness #chronicillnesswarrior #undiagnosed #undiagnosedillness #googledoctor #google

Amazing people!!! Amazing!!! At the HudsonAlpha Institute for Biotechnology's Smith Family Clinic for Genomic Medicine. They are sequencing my genome for free because I have been suffering from a metabolic disease for my whole life. The pain and isolation has been staggering. Gestures like these reinvigorate my faith in humanity. I'm really happy. #smithfamilyclinic #hudsonalpha #genomics #genetics #raredisease #rarediseases #metabolicdisease #undiagnoseddisease #undiagnosed #undiagnosedillness

Do you know an undiagnosed child? Applications are located on our website! www.kidswinproject.com #kidsshouldbekids #forthewin #undiagnosedillness #kidswinproject

These girls were asking to take pictures with me but really I wanted pictures with them because they are my heroes! With the beautiful @rickithepicky @awareofangels #RUN #awareofangels #photoshoot #raisingawareness #undiagnosedillness #geneticdisease #wardrobestylist

MOST RECENT

Support chronically ill, mentally ill, physically disabled, or otherwise neurodivergent people who are undiagnosed. It took me fifteen years for my diagnoses. It doesn't mean I wasn't always sick. Stay strong 🥄♿️ [Image: Tumblr text by @/so-over-ableism with the title saying "If you don't know what your illness is yet..." and bullet points below that say " • that doesn’t mean you’re not sick
• you will find answers
• I believe that you’re sick • you will get through this tough time
• you don’t owe anyone an explanation
• you will get the necessary accommodations • those who truly care about you will help you
• I love you
• I believe in you
• I'm here for you" end description.] –James🌻

Clinical Problem. #undiagnosedillness

on today’s episode of What The Fuck’s Wrong With Jeremy: I now have three new medicines! One for pain and hopefully it does work, one for iron because im anemic (I FUCKING KNEW IT) , and also borderline diabetic, not sure yet but it’s close. and so im also on vitamin d now because that was low.

SO. in three months we are checking again the blood sugar and iron to see where it lies and see where on the diabetic scale i sit. so much is making sense but none of that connects with the lumps and pain throughout my body. im just glad i have more confirmation with my cold problem and everything else. and now i have pain medicine which should help until we get the blood tests back on the main problem.

all in all, good visit. but now there’s more to be done and more treatment to be had.
am i disabled enough for you now, ssi????? #spoonie #disabled #sickkid #ostomate #undiagnosedillness

Fellow #chronicillness sufferers, can anyone offer me any advice on how to get my doctors to listen to me? I have a primary care doc, a cardiologist, a neurologist, a rheumy, and a PT. As of right now, the neuro and the cardio say nothing is wrong with me, primary doc says he’s not sure, and rheumy says probably fibro. PT recommended getting checked for a connective tissue condition like EDS or hypermobility syndrome, because of the way my bones and joints move when she works on me. Primary doc says it’s NOT fibro, but rheumy says primary doc is who should have to treat me for fibro. It’s all so very confusing. SOMETHING is wrong. They won’t listen to me when I ask if it could be #pots or #cfs or #eds, even though I have so many of the symptoms for those conditions. I suffer frequent migraines, head pressure, dizziness and vertigo, constant palpitations, chest pain, tachycardia, hot flashes, intermittent exercise intolerance, fatigue, nausea, widespread body and joint pain, extreme anxiety, muscle spasms and tension, and various other uncomfortable body sensations and issues. I have to find a way to make them listen. I can’t keep getting dismissed, because my quality of life is practically zero and this can’t go on. Thanks in advance for any info or advice! 💙
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#chronicpain #chronicillness #chronicfatiguesyndrome #fibromyalgia #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #suspectededs #suspectedpots #undiagnosed #undiagnosedillness #chestpain #migraine #bodypain #whatiswrongwithme

had a breakdown tonight ... i miss going out, going on coffee dates with my boyfriend, goingnon walks in general, and just getting out to do something fun instead of doctors all the damn time. im tired of this constant staying in the bedroom, unable to do anything, just .... being stuck and bored and doing nothing fun.

i miss living outside of this bedroom and doctors. #disabled #spoonie #undiagnosedillness #ftm #trans #

Oh my dawd you guys!!! So we’ve been working on getting a project off the ground here at #centralwashingtonuniversity to teach students and the public the appropriate way to interact with service dogs as well as educate people about service dogs in general! Well, we finally are in contact with the groups we’ll be working with!!! Our first meeting is tonight and we’re beyond excited to get started ☺️ wish us luck! 🤞🤞 #servicedog #themajesticflynn #studentteam #makingprogress #autismspectrumdisorder #anxiety #depression #panicdisorder #undiagnosedillness #respectthevest2018

the pain is getting worse by the day while i wait for answers. i don’t sleep much anymore and not even sleeping medicine is helping at this point. yesterday i just about passed out twice and got super dizzy and lightheaded. i can’t move , i can’t sleep , and it’s going to take about two weeks for my blood work to come back because they are digging into searching for any and all types of infection. i don’t know what to do anymore but wait in limbo while im in horrible pain. it’s getting both frustrating and upsetting to just lay around unable to move barely my hands, have my boyfriend carry me and get about as much sleep as i do, and just not be able to function whatsoever. i just want relief but more questions than answers just keep piling up ... #undiagnosedillness #spoonie #trans #disabled #chroniclife

I am literally hanging on by a thread, dangling off the cliff. This anxiety and pain is beating the shit out of me. Chest, arm, shoulder, and back are nagging, and couple that with the dizziness and fatigue and now I’m convinced I’m about to have a heart attack. Like always. When the pain won’t quit and I have all the symptoms my brain goes to a dark place and I don’t know how to make it stop. Nothing is helping and it’s been almost 3 solid days of this. Years of feeling overall like garbage and still no answers or effective treatment. Still having to talk myself out of going to the ER because they won’t help me anyway, and they told me not to be the girl who cried wolf anymore. Not sure how much longer I can keep doing this. #photoisnotmine #whatiswrongwithme #undiagnosed #undiagnosedillness #maybefibromyalgia #maybepots #maybeeds #suspectedpots #suspectededs #chronicpain #chronicillness #chestpain #backpain #anxiety #panicdisorder #somuchpain #makeitstop #icantdothisanymore

We are so happy there’s snow! ❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️#snowdog #snow #themajesticflynn #servicedog #youremygreatestadventure #anxiety #depression #autism #autismspectrumdisorder #spoonie #undiagnosedillness #centralwashingtonuniversity #patchworkpond

so this is one of several large masses that have appeared all over my body in the last two months or less along with severe weight loss, fatigue, weakening of my entire body, and excruciating pain. they took a biopsy of a left leg bump that came back with lipoma. not responding to steroids , the lipoma diagnosis isn’t making much sense , and the amount of pain i am in every day is staggering by the hour. my boyfriend / roommates , and family have to literally carry me EVERYWHERE , sleeping is damn near impossible , and forget about moving even the slightest laying down or sitting up. nobody has answers for me so far, ive had countless tests done and yet everything has been “fine”. im seeing the hematologist/ oncologist and my endocrinologist on tuesday in hopes of something being done. im in desperate need of pain relief and more tests. everything has just been going from bad to worse with little to no answers and being stuck in waiting limbo. it’s been a horrible few weeks. im just wanting answers and relief at this point. exhausted and frustrated don’t even being to cover it. #spoonie #ftm #disabled #undiagnosedillness #tiredandfrustrated #chroniclife

Some of the best advice I've found thus far, though it's probably a lot easier said than done. Still, I think this this quote is particularly important if you apply to those of us that are dealing with a #chronicillness or #undiagnosedillness because the journey really IS this hard sometimes and I know we could all use a little guidance as to how we can get through it all a little easier.

📷: ? #notmine Anybody else with fibro get random sensations and weird feelings that you can’t explain but just feel not good and really uneasy? I’m trying to figure out if what I’m feeling today is new anxiety bullshit or if it’s fibro related. I’m having tingles all over my head and neck with dizziness, my stomach feels like a empty pit but I’m nauseous and have had awful bathroom issues this morning. And I’m having what feels like adrenaline surges, that woke me up at 330a and wouldn’t let me go back to sleep. All this on top of back, knee, arm, and neck pain. I have so much to do today and I can’t seem to keep moving for more than 20mins at a time. 😞 Why does my horrible body have to ruin everything? #fibromyalgia #chronicpain #suspectedpots #suspectededs #chronicillness #undiagnosed #undiagnosedillness #nausea #headtingles #wtfisthisnow

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