Hey everyone, I have been thinking about starting a YouTube channel, mainly to make videos about hacks and tips to living with a Chronic illnesses, but also thinking about doing some vlogging as well To show what it’s really like to be chronically I’ll , would anyone be interested in watching? Or have any video ideas? Would really like to start it but I am scared that no one will watch haha, any thoughts are welcome😊😊 #EhlersDanlosSyndrome #ArnoldChiariMalformation #Syringomyelia #Gastroparesis #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Anxiety #Spoonie #Vlog #spoonielife #PelvicOrganProlapse #ChronicPain #Hope
Do you have any comfort items, accessibility tools, or even pets that help you while you're in bed? What makes your bedside helper helpful to you?
#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis #Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness #alwaysinbed
Looking for a post specialist that can diagnose
Here in North carolina that takes insurance. Please help I can't travel far because I do have gastroparesis too. I'm not sure what to do the closest are the functional doctors for pots but crazy expensive don't take insurance I'm desperate I'm lost , dont know what to do. #northcarolina #PosturalOrthostaticTachycardiaSyndrome
My cardiologist won't help me at all when it comes to pots syndrome an getting diagnosed, he claims it's not his area of specialities, he doesn't know anyone either that does. I feel stuck, I feel lost, frustrated this has been going on long enough it's getting worse the older I get. In my teens I only got dizzy now I get more I just don't faint but sometimes I do feel like it, my cardiologist does say my heart goes fast for me but it's normal for me, which I think would be a sign of pots. He didn't do the tilt table test correctly in his office ,since he doesn't actually have a tilt table. Read online how to do one an he only let me stand for 5-10 minutes with the pressure cup on my arm. I was so dizzy an felt nauseous an he claimed I was fine, everyone just Blaims it on vertigo I'm so sick of hearing the words vertigo. I honestly don't know what to do , Charlotte NC is Too far for me to travel I have gastroparesis too ,an celiac disease can't travel far at all Because of the gastroparesis.
I DONT KNOW WHAT TO DO IM LOST ,AN LOST FOR WORDS.
Well I was brushing my teeth. An afterwards, my vision got all blurr an I was nauseous an sweating an spinning. Couldn't walk to my room yet so I was siting on the toilet with wet wash cloth around my neck. Had my head down on my sick while sitting on my toilet.
This is my second spell this week this bad. Every doctor said they don't know who specialize in pots syndrome I feel like I'm being brushed off when it comes to this they always say it vertigo.
Hey everyone. I have a repeat gastric emptying study tomorrow to see how my #Gastroparesis is faring. There’s been a distinct deterioration in symptoms and tolerance of oral intake over the past 6-12 months and we’ve been discussing an nj tube but gastro doesn’t want to do it without clear evidence as my weight is fairly stable due to consuming Coca Cola for energy. My hospital uses egg white omelette and toast for it. Last time I had eggs it went badly. I couldn’t poop for 4 days, had severe distension and pain, and then had a rather embarrassing accident on the way home from a family visit. So I’m dreading it! I’m also dreading it coming back no worse than last time and having to continue this cycle of trying to force enough calories in before I feel too sick to get anything else in. Then being in pain and bloated and feeling crappy. My muscles are so weak from 11 months with very minimal protein intake 😭 #hypermobileehlers-DanlosSyndrome(hEDS) #Gastroparesis #AutonomicDysfunction #HemiplegicMigraine #ChronicPain #ChronicFatigue
Here I am on day 10 of some sort of respiratory infection. My friends and family are nagging me to see my Dr because it's getting worse. The thought had crossed my mind but I've been down this road many times. When I received my gastroparesis diagnosis nobody really gave me very much info. In fact I had to study Google to find out much of anything. All the gastroenterologist said was to eat small, frequent, low fat, low fiber diet. See you in 6 months. I asked to see a nutritionist myself thank goodness. Anyhow, apparently taking antibiotics for infections destroys the good bacteria in your gut. So, my Drs won't give me antibiotics. All they do is recommend OTC meds, rest and plenty of fluids. I think it's pointless to see my Dr. I guess this is more of a vent but why do I explain & explain and still have family and friends think they know more about my conditions than I do? I don't expect them to remember everything I deal with and what the treatment options are. All I ask is that they respect that when I'm visibly I'll, that I know what my options are. So, I'm checking my own vitals at home, especially my SPO2 at this point. If anything is off, I'll see my Dr.
Yes here I sit or rather lay in the hospital bed. Nervous I have a #liver biopsy getting done tomorrow. Happy drs finally listened. Sad because as of yet the don't know what's exactly wrong.
I had a ct scan of my abdomen in January all it said was fatty liver. My swelling (didn't know it was my liver atm) I though was another hernia or my back. 10 mths later. I see one of my Dr's and tell them about all the symptoms I been having lift up my shirt to show the swelling & they freaked.
I was admitted to the hospital by that evening and that was on the 1st. Have had numerous blood tests, gastric emptying test another ct with & without contrast. My liver is very inlarged and the found a total of 6 lesions on it one measuring 14mm.
So here I lay at night in my #Hospital bed.
Good evening! I hope you all had a great week. No matter what you go through, you can choose how you'll respond. In all things, choose to be joyful. No one can take that away.
#Gastroparesis #RareDisease #tpndependent
#EDS #Zebra #Dysautonomia