วีดีโอ

Hey Jill, what is "primary" and "secondary" Addison's? I was diagnosed with AD in March 2024. After my doctor diagnosed it, she sent me to have an MRI on my adrenal glands. Both adrenals had shrunk down to hardly visible.

Thank you for sharing!

Gj💪

After 2 trips to the ER in full crisis and 7mths of fighting with doctors to get labs, I finally have the labs to show I have adrenal insufficiency, and I am still another 6 months out to see an endocrinologist to find out what kind. Right now, hyperaldosteronism is preliminary diagnosis, but labs show my endocrine system so depleted nothing is firing properly, hypothalamus, pituitary, adrenals,... ALL my hormones are depleted to nothing. I'm on DHEA, progesterone and estradiol along with an IV vitamin infusion to help feed my metabolic system but how can they make me wait 6 months? I'm terrified of going into crisis AGAIN without a diagnosis for the ER to treat... My last trip to the ER, they refused to test my adrenal glands and hormones, gave me an IV and let me lay there vomiting for 26 hrs until my body figured out a way to balance itself out enough for me to stop vomiting and they sent me home... I swear, sometimes it feels like they think I'm too old to bother with.... I praise God that I know He is with me and my life is in His hands and not that of the doctors... They would let me die if not for God's interference.

thanks Jill. I have multiple other rare chronic conditions, the AI is Tertiary to Prednisone use. Your talk was good to get me thinking more about educating my family. (Because I live on my daughter’s property and she is palliative Care Physicialn, husband neuro anaesthetist specialist, I tend to think ‘Oh they will take charge’ but reality is they will not always be were I am. ) Plan, Prepare, Repeat as in NZ our Health Service, especially in Endo is collapsing.

Your story is truly inspiring, you are a warrior ❤❤

The Human body is just the most amazing incredible system.. human.Biology has always fascinated me. And i did nurses training.. This is one exceptional dental proffessional..Jill you are blessed with your health proffessionals...Wowsa what an amazing thing to have done blood analysis.....Very positive results...you must feel so happy...and proud of your self care regime... Prooves it works. Diet excercise sleep. You are an incredible human being Jill....I love this video.....our blood can tell us so much about our health.... Yes our bodies are an amazing machine...Constantly working to keep us healthy and alive...❤❤❤❤❤❤ fascinating... Thanks for sharing.xxxxx

It's really hard to advocate for oneself when you're in crisis. I'm usually so weak and dizzy that I find it hard to explain why I need to get treated. Luckily, I've been able to get the help that I need even though some people at the desk have tried to turn me back home. At that point, I didn't have the strength to start to start to explain with many words why I needed help. I feel like I hardly can put words together at that point. I feel so lucky that my wobbly and weak voice just saying that I feel so weak and dizzy and thirsty, has been enough. Usually, at that point, I've been unable to keep anything down for a few hours and kept throwing up, and that's why I usually get quite dehydrated. It's kind of scary that a person who doesn't seem to fully understand my condition decides whether or not I truly need to be medical care. Basically, decides for my life or death. That's why try to keep solu cortef with me so that I can at least get some hydrocortisone in me if someone decides to turn me back home and I'm unable to keep oral medication down.

This was so encouraging! I recently had oral surgery to extract a tooth. I called my endocrinologists office for instructions on dosing and literally received no feedback, so I relied on info found online and in support groups. Personally, I double dosed the day before, triple dosed the day of the procedure, and then doubled for a few days after. I probably should have kept updosing for a little while longer, because 1 1/2 weeks post-op, and I ended up needing to use my injection yesterday to head off a crisis.

When there is no advocate in your life a crisis is very scarry. Here I am subjected to a non crime hate police report at the behest of a gp. Was too low to be polite. Difficult to survive this level of support. No option here to change the team. Love you're description, learning a lot x

Jill, thanks again for an informative talk. A couple days ago, I was in ER to rule out a heart attack. It's still not known if I had mild one or not, more testing is upcoming. I am an RN so usually I am a good advocate for myself. I was really concerned about the seemingly lack of knowledge about SAI from all my Nurses AND the ER MD. I even asked if they could call my Endocrinologist for guidance and they said they didnt need to and didn't even want her name. They had me with no fluids just IV access for over 8 hrs. I need electrolytes all day. I was in pain, yet no pain med given until 6hrs later or steroids. I was self treating by taking my own pills (in secret). I found it scary to be honest that the knowledge deficit seemed so high. My support person seems to go blank when i go to ER. I am thinking of typing up an easy to read list of things i need in an emergency. They did look at my emergency bracelet which also reads Needs Steroids...but the bracelets didn't change course of actions. Do you use any cheat sheets for your support people to help guide the medical staff? I have had 3 ER visits and 1 hospitalization for 3 different things since May and I am feeling more and more insecure about my care. -Samuel

I m Addison's Deases patient. 😢

Could you describe what your back would feel like when it was in pain? Also how bad were emotions?

Great channel! I have a question from Norway: If the person with Addison appears "low" / in a bad condition to the people around him, but he does not agree that he needs extra meds, how can we feel safe that he is ok?

Amazing, Thank you . ❤❤❤

Great video and please be careful with that hand. What company did you use for your emergency bracelet?

You've been through so much with that thumb!! So sorry for that Jill. Thanks for sharing your advice. I am not thriving with AI. It's so hard but keeping on trying.

Great advice Jill re steroid updosing....❤ your hand looks amazing...as do you...Yes we all need help....well done your mum and mum in law..❤❤

I agree with you that I need extra steroids pre-surgery, during surgery, and post surgery - and that is based on my experiences with being put under anesthesia and having local anesthetics, and how I have healed after procedures (and the resulting adrenal crisises and ER visits I have suffered by following the doctors recommended steroid dosing) - and yet the conventional medical wisdom these days is dictating that adrenal insufficient patients need very little extra steroids for a surgical procedure, or even no extra steroids at all, and if extra steroids are given post-procedure then they are only given for 24 -48 hours - and doctors say that stress dosing your steroids will inhibit or slow down the healing process, but I find that it is not having enough steroids and an inadequate cortisol level that leaves my body unable to heal itself, and when I take the extra steroids (more than what my doctors recommend for longer than they recommend) then that is when my body heals well and rapidly. - It is just so frustrating that doctors do not seem to understand how to treat us or how to help us - we should not have to routinely defy our doctors in order to keep ourselves relatively healthy and out of the emergency room.

💕💕💕love your Christmas tree! It’s beautiful 🤩 and the music👌🏻👌🏻👌🏻🥰🥰🥰Xx

Brilliant interview with an amazing mind coach/ healer/ naturoparh..Tracy...I love Rieki and reflexology. Alternative therapies...Thank you Jill and Tracy....so much..❤❤❤

😂😂😂That made me laugh. You have the most adorable loving sweet dog Jill❤❤❤..What breed is Brenan.? So lovely and fluffy.❤❤

That absolutely did just brighten my day she's amazing 🐶🤩

😂❤

Thanks for sharing your story, and thanks Jill for keeping me going as I navigate my recent Addisons Diagnosis

Your an amazing girl.❤❤

Do you ever see a doughnut kind of light in your eyes just before the crisis hits as this is what happens to me.

😢😢 thank you for your information, I'm on hydrocortisone pills but I have no clue about what the infusion pump is😢

Hi Jill, would you know of anyone in Ireland that can prescribe a infusion pump. I was diagnosed with Addison disease three years ago and find myself really tired most days. My endocrinologist has no interest in helping me. Any information would be greatly appreciated. Regards Shane

What a cutie!🥰 we have a fluffy puppy too, called Darcy but she’s 15 now but we will always call her our fluffy puppy 🤣💕🙌🏻 🐾Xx

You are one inspirational lady 🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻💕💕💕💕xx

She's adorable!! Take care of yourself.

Cheering u on ❤😊🎉

Harley Davidson and dogs GREAT

Jill would you conciderplease do a video diary for what you eat each day for a week. Showing portion sizes...? I agree. Since i took part in your nutrition session. I have tweaked my diet. And feeling much better. Next to tackle getting fitter.. i am the unfittest i have ever been in my life🙈Going to start with a walk each day. Do some yoga pilates at home. Then re join the Gym. To do yoga pilates aquaerobics...as i have put on wieght...since starting steroids..I always have. Changes my body metabolism...Always eaten well. But went through a faze of craving chocolate. Hot chocolate. And sweet things. Cakes ect.( the cravings were so strong. Like being pregnant) I now look like i am pregnant. With a roid baby😂😂. And i was definatly going through a down period after diagnosis...so an element of comfort food combined with being a couch potato !! Pre and post diagnosis..Its coming up to a year since diagnosis. And finally i am feeling so much better. More energy. Which i just did not have before. Having pnumonia in spring did not help...!! It took me a while to accept this illness. Learn how to manage it. Now i feel happy and ready to get cracking towards my excercise goals...and loosing the excess wieght....🙈I have always been very slim my entire life. Could eat what i liked. Never put on wieght...But i was always on the go. Fit... I also have hypothyroid hashimotos. Which does not help..... previously i did not put on wieght with hashimoto's!! ( which is unusual) Every time i have been on oral prednisolone for asthma. Each time i balooned...fluid retention... blowing up!! Putging on lots of weight!! Steroid phycosis!! ( awfull side effects. ) other people i know dont have these side effects. But my body does not toletate steroids very well.😂 I was bonkers bloated. Legs swollen. Insomnia. Mood changes. Crying. Felt lime i had pmt. Sugar cravings..My whole hormone system went out of wack..And i went really bonkers for 3 months when i first started taking hydrocortisone. I have always suffered with hormonal imbalances. We are all differrent. And our bodies metabolise react to steroids differrently... But i am going to do my best to get fit again...❤❤❤❤ The interview you did with the amazing girl who was nearly dead before diagnosis. And a year later running a marathon..Totally inspired me....❤❤❤❤❤

Your dad is definitely watching over you ❤️he is trying to still be there for you in ways that you will recognise ❤️cheering his warrior girl on. You are so right as well about looking back and trying to reach for what we had before when, once you get your head around it, there are major changes and adaptations that we need to do. We can still have a rich and productive life. There are still some things for our quality of life that we can control ❤️🥰

Any way to get something like this if we pay for it and shipping in the USA? Or do you have someone you work together with here? I would love to have these items and even be a part of the team/solution to help here in the states.

Interesting, but what he says about osteoperosis is not correct.

God love you girl...I'm sorry I laughed when you said "Jill got the bad $perm " when you told the story about your dad losing the hair on his legs and how you lost it also in your late 20s I had the same problem with the really thin face my stomach would swell when my weight would stand be much more noticeable...my landlady asked what's wrong with your stomach it's swollen like a pregnant woman and she called me golden boy because of my bronze colored skin ...I'll ❤always listen to your memories

Shirley

❤❤❤

I’m on the hunt for an Endo who will give me a shot at a pump. I have issues with digestion and I literally never know when the steroid pills will kick in.

Thank you so much for sharing this! ❤I feel you have your dad with you all the time. That must be comforting to know he’s there for you! This is so beautiful ❤

Lucky you to have your dad come through❤. Keep up having an open mind and heart. I've done psychic readings for people who want to connect to the other side for many years. I also do animal communication all over the world. Its a fascinating gift. Embrace it and believe with all your heart. Love 'Salt' in the background of your videos. Adorable 😊