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what is it like have a feeding tube I may have to get one this is new to me

Miss you so much 😢

What caused adrenal insufficiency?

I have a quick question, im gonna start home infusions for pots and I wanna know if all pediatric patients get a portable pump? just wanna ask because I know you get saline infusions too :p

Miss you 👼🏻

Can u taste ur farumler I may have to go on a feeding tube

I have a feedingtube too I had mine since I was a baby 3 or 4 days after I was born I started doing videos about my feedingtube too

I wish you were still on youtube!

Thanks for this video. I came here as I was trying to find out why my endocrinologist had requested a cortisol test (he didn't mention that he had checked that box, or what it was for). I was seeing him for hyperprolactinemia and receiving treatment for that. Got midway through your video and hear you mention EDS, I also have that! Is it possible this is what he is looking for or just a general check up?

They've just found that I've got severely low cortisol They think it could be addisons

How old are you?

You need to get of that med!! Do some research here on utube about "benzo withdraw" it's scary stuff.

Hey thank you for sharing. I know it can be hard to talk about. Im 27 and my Dystonia was undiagnosed for years because we went to nerologists and they told me to see a phycologist. Today I had a fit and wound up on the floor before hitting my head of the floor so hard my face hurt. This disorder is not well know and I am the only one with it in my area.

God bless you hugs I.have gastroparesis is not good lord help us it hurts so bad

Thanks for your video. My 2 year old daughter is getting a G-tube at the end of the month and I'm trying to get a sense of what the process is like. This video was very informative.

Praying for you sweetheart 💖

Hello. I have gastro paresis and I was wondering the doctors refuse to give me pain meds I'm allergic to fentanyl and morphine so they stopped giving pain meds Dilaudid due to slowing the stomach down. They give me tramadol which doesn't work n they accuse me of searching for drugs and I'm so frustrated like is gastro paresis why you are on Dilaudid or is it something else? If I may ask

Rest in Peace Dalia!!! Never forgotten!

Oh God, some people are not fit humanly to be in the medical field. something of the sort happened to a woman in labor, the nurse was implying that she is pshying for drugs, and that poor lady had a 46 hours labor...

Are you on any benzodiazpam or muscle relaxers?You seem slow in your speech and movements. This might be the reason why they thought you where drug seeking. I'm not trying to be rude just letting you know. I also have been treated this way. I have multiple sclerosis and my flare up are very painful. It seems like if you go to the doctor for pain you are treated poorly. The crazy thing is the #1 reason people go to the doctor is for pain.

Thank you for sharing this - I'm at 200lbs right now, bloated, and in terrible pain from my GP, but so many doctors just look at me like "how can you be malnourished?" It's very lonely and discouraging, isn't it? Wishing you relief from symptoms, and that we'll all get some better medical treatment!

Wow some doctors are so mean! I have a couple chronic illnesses and it really hurts your feelings when they accuse you of something that isn't true. Sorry :(

Dear how do the doctors determine you can have IV treatment at home?

do you reuse your feed bags? My husband is on 3 feeds a day and I've been using a new bag each time. What do you do? If you reuse a bag how do you clean it?

It's like listening to my daughter. She was recently diagnosed and it took years of misery before they said the G word. She eats baby food but only a few will stay down. Right now she is trying to not get tubed. She is doing herbs. Anyway, God bless you for this video. It's so good to hear from people that understand the pain that goes with this.

OMGosh! I was just diagnosed with dystonia a couple days ago and so much of what you say resonates with me. For years they labeled with me anxiety and loaded me up with so many medications to try over months and years.... Phenergan, Compazine, Thorazine, Reglan, Toradol. I had a dystonic reaction from compazine and they had no clue what was happening to me while I was in the hospital. They told my husband that he should leave me, because it wasn't going to be an easy road that was almost 20 years ago! My husband almost punched him in the face. I was diagnosed with dysautonomia about 4 years ago and just started my journey with POTS, Gastroparesis, and all my symptoms associated with that. My muscles lock in my feet and ankles and I have been having trouble walking.

Hi Dalia, NADF would like to e-mail you an information packet and postal mail you a wallet card (for you to fill out and carry with you). To do that, please e-mail us your e-mail and postal mailing addresses. Hope to hear from you. Melanie Wong Executive Director National Adrenal Diseases Foundation 505 Northern Blvd., Suite 200 Great Neck, NY 11021 (516) 487-4992 NADFMAIL@nadf.us www.nadf.us NADF does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have medical knowledge. In all cases, NADF recommends that you consult your own physician regarding any course of treatment or medication.

😃😃😃 nice girl

😃😃😃 nice girl

Phenergan, Reglan and Haldol are a few others that can cause dystonia. Phenergan is used for nausea and sometimes in cough syrup. Reglan is used for GI problems but also for migraines. Haldol is a psychiatric medication but also used for migraine. I would stay from any of these commonly used medications, especially in ERs.

Thank you so much! Really helped tremendously! I transitioned from a kids hospital and now to the ER with a mix of both people and kids. I'm all about obtaining experience but I felt like I was a failure to people with chronic illnesses because of my lack of knowledge associated with various illness types. Once again thank you! And I saw you are having awareness of gastroparesis? I would absolutely love to help in any way!

Hi Dalia I came across your video and noticed you are a warrior fighting day to day illnesses. I am a new nurse working in the ER, and need some serious help. For anyone that has a severe chronic illness(es) what is the best way to make them feel comfortable? Had a patient who was suffering from Dysautonomia which was new to me and was crying because a Dr prescribed her a med in which she has severe reactions to it (difficulty breathing and her pulse is so faint) the thing was, the dr kept brushing it off as if it were nothing serious but deep inside I knew this woman was completely afraid. And well being a nurse, sometimes you have to follow dr's orders but I did not insert her med through her port bc I was scared something bad was going to happen....she thanked me and she had this other med which I did insert that made her feel better. What can us nurses do to make chronic illness patients feel better or do when they are in a flare up? A response or video would be great. Thank you so much. Never heard of Dysautonomia in my whole entire life

Thank you for sharing your story. I have adrenal insufficiency too. I hope things are going well for you. How do you deal with stress?

Hay I wanted to let you know that I have EDS type three. I just go over being sick with colitis. I was wondering if the colitis is part of EDS. I was also wondering is we could FaceTime or Skype. I have a lot of questions for you.

I have dysautonomia and definitely know how stressful it can be. We spend Christmas Day with my family and then afterwards go to Ohio (which is a 6 hour car ride) to see my husband's family. Sometimes it's hard when we're with them cause I won't be feeling the greatest but I also don't want to say anything..even though his parents are very understanding. We stay at a hotel just so if the house gets too full/loud/crazy (there are two little kids so sometimes it's just too much for me to be around) we can go back to the hotel for the night so I can recoup. The key, like you said, it just resting and giving yourself whatever it is that you need. I've been sick for 6 years now and still struggle to find a good balance. This was a very good video though. Thank you so much for talking about it! :)

Sorry I was on my daughter's account when I made the comment by "Gina". I loved your video!!

You are so awesome! Thank you so much for making this video. I have gastroparesis also, & I loved it!!

thanks again my intuition tells. me Reglan is not right for me I see my doctor Thursday and we will discuss hope u are alright hug

when I saw you responded it felt like you hugged my heart. have you ever tried Reglan? please do not feel obligated to respond . I am going onto Instagram!! may you feel better each and every day my friend . hugs

I just got diagnosed and do have an eating disorder. I am 35 years old and have had an eating disorder since age 12. I after a year and half finally I got taken seriously. your message calmed me down. thank u! are there any message boards I can go to ? my family does. not get it. if u do not respond it is all ok. my hope is you are having a peaceful day . hugs

wow your beautiful wish you the best to you

this might be a dumb question but can you drink water? if not how do you keep your thoat from getting dry?

I hope you get a break...and I'm glad the fundraiser was still going strong. It always seems like something is going on especially with multiple rare conditions. I hate to be cliche but you are not alone and hang in there 💜

Thanks for making this video Dalia...I hate that people can get MVI etc for non medical purposes yet people who need them to live can't get them.

thank you for making this video.

Jennifer you could kind of say that. The term "adrenal gland disorder" indicates that your adrenal glands do not function properly. That covers everything. Adrenal insufficiency, Cushing's Syndrome, Addison's disease etc.....are the actual diagnosis which would tell the doctor what is wrong with your adrenal glands, such as producing too much cortisol vs not enough cortisol in the body.

Is Adrenal Insufficiency, the same as Adrenal Disorder?

Hi Dalia, Thanks for taking the time to talk about your experience with adrenal insufficiency. At the end of September of this year I took a trip to the mountains with my mother and boyfriend. I got a pretty bad sinus infection/ head cold because of the climate change and the heavy chemical cleaner odor in our room. Since I got better, I've had major blood sugar problems. I went and got it checked out and it turns out I'm hypoglycemic. I eat a plant based diet, and am pretty active. So this was shocking. I'm starting to think it's AI because I get really "stressed" feeling and I start feeling funny. Even when I eat small meals. I've been sleeping 12 hours, and after a physically taxing day my body is sore and I have a headache all the following day. I have a lot of allergic reactions with no diagnosis of any allergies. It's just weird. Could there be a possibility of me having AI?

Kevin, I would talk to your endocrinologist about adjusting your steroid....with all you have going on there could be other factors that is causing you to retain more fluid then you should be. I hope you can get this figured out!

Hey I know in the beginning of the video you had said you couldn't finish/do your speech at the fundraiser and said you'd say why, I think you forgot to say? or maybe I missed it, idk...hope all is well with you! Love the video! <3