Відео

Thanks for sharing! My daughter has Primary Addison’s. You are doing a great job!! ❤️🙏🏻❤️

"Take what i say with a pinch of salt" I hope you meant that pun!! 🤣🤣🤣👌

Oh my goodness, thank you for sharing this!

I love your vlogs 🤗

I think you are very brave thank you for sharing your experience with addisons its not as rare as you think!

Love this one Jenn. It took me 20 years to get my addisons diagnosis and totally feel a lost sense of self. I felt similarly to you that I always knew something was fundamentally wrong.

Thank you for sharing. Great story. I am same. New to me. I don’t understand the moving hormone pieces.

I really appreciate you doing this video <3 I just got back from taking some blood to get tested for this disease... I have other autoimmune stuff and was also diagnosed with Fibromyalgia which IMO is a term for "we cannot find what is wrong with you"... I thought that Addison's implied darknening of the skin and without that it couldn't be it but the doctor is suspicious of it being from the pituitary gland and your explanation about this particular thing made so much sense! In a way I don't want the results to confirm Addison's but... on the other hand, I could finally tackle the symptoms and not feel miserable all the time. Thank you for this very informative video. <3

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Thank you for this video, Jennifer, I can absolutely relate. It's been three years since my diagnosis and I still haven't reconcile myself to my new appearance (puffy face, double chin, weight gain). It seems so superficial compared to the benefits of the steroids, but it really affects me. Sending hugs your way ❤️!

So I have been diagnosed with POTS and Hypermobile EDS and am now being tested for Addison’s disease now 5 years after those diagnosis. I don’t know what not feeling miserable feels like anymore. I am trying so hard to just stay positive and appreciate what I can do. Thank you so much for this video!!!

Getting my period makes my cortisol low, which gives me tremors and joint pain. Thank for sharing your day.

Thanks for discussing this Jen. Me too. Wish there was a version that didn't cause fluid retention.

I just asked my doctor to check my Cortisol levels after reading something that clicked. I figured I had "High" Cortisol levels, instead i have LOW Cortisol. I am being referred to an Endo just have to wait for that office to call. Good luck with everything, and you have a new subscriber.

I'm not yet diagnosed but my sister was dx with EDS and I have symptoms and it's our mother who shares our symptoms too. I am dx with POTs, and yeah, flareups are awful, I'm 21 and they've become more frequent, I'd say atleast once a month I have about a week where I am out of commission. My hands hurt, my wrists, my knees lock and hurt, my upper back and neck, there is no comfortable sleep, waking up every other hour on the dime, whether to pain or truly just no such thing as a comfortable position is true. Plus headaches, I get constant headaches during it, light and sound sensitivity, feels like my head could explode. With it comes awful brain fog. It's truly rough because everyone in my house works and I stay at home so it's responsibility to clean... during a flareup that isnt going to happen, I'm lucky if I find the energy to shower in that week (I'll shower about once or twice during a flareup rather than daily or every other day) right now I'm in an awful fatigue. Been taking a nap mid day everyday and everything mentioned above happens. Sometimes, like now, I wake up at 2-3 am and there is no going back to bed till I am so exhausted I just can't anymore and nap later in the day. Then the cycle restarts as I go to bed at 8 pm as even with a nap (usually a 3-4 hour nap), I'm still exhausted by then.. It's an awful cycle. Right now I have dishes that I havent been able to find the energy to wash for over a week. It hurts my hands to grip them with the soap. I just can't do it and it sucks because I know they're just in there dirty. I see them whenever I go to get water.

You haven't mentioned rapid weight loss. At my worst I would lose 1 kg a day. I was on fire with the constant burn.

Hi, I have one kidney only, it has a tumour in there which has spread to pancreas. Last week rushed into hospital vomiting bd horrendous pain in stomach. They had no idea what it was, after just me feeling terrible and test done I hear the words ‘adrenal gland failure’. Sent home with hydrocortisone tablets and that’s all I know. Seeing my oncologist Thursday 5th September so will ask questions the . Any advice xx

Even lifts can affect me some days.

May GOD BLESS!!!

Does your wife take fludrocortisone as well as cortisone . My daughter eats lot more salt in hot weather . But heat is definitely an enemy of Addisons !

My daughter has had Addisons for many years . As time has gone on she can quickly recognize the symptoms of low cortisol . For her it is nausea and stomach pain . .Great to hear you had an emergency injection with you . When my daughter feels she is at the point of needing going to the hospital she gives herself the injection first , as so many medical staff don’t understand how serious the condition. She has finally been has coded on her medical records at the hospital to give her IV cortisone . As soon as she enters the hospital , but again that is not always done ! I think in an emergency you definitely need someone with you to advocate what you need . Due to a lack of training and understanding of the condition . When her injections are run out of date , she gives them to family and friends to practice how to mix the injection ,so we are all able to give it . Do you carry an emergency letter to explain your condition ?

If it reassures you, if you are a confused mess and totally too far gone, a passerby found me outside my student (this is key) accomodation, assumed i was too drunk to know how to get home, rang our porters who know where i live but they quickly recognised i couldnt get home or be safe alone so an ambulance was rung, they immediately assumed i was extremely drunk or on drugs, but quite quickly coz i was incoherent they checked for medic alerts and saw i was SAI and injected cortisol and rushed me to hospital. So there are lots of things that could happen that would mean theyd be more proactive checking medic alerts and looking specifically for information about you.

I have secondary AI, its such an overwhelmingly difficult thing to live with. Im incredibly unlucky in that i dont absorb oral hydrocortisone and so im on injections three times a day subcut. I also go into crisis really easily and by some mechanism i pass out really easily, so the people around me have to be super cautious which means its hard for me to be alone. These days if we intervene early i rarely end up hospitalised even if im relatively poorly, its usually possible for me to sleep it off, even if 6hrs later (often in the middle of the night) my dad comes in to inject me again for safety. I have got good at recognising the confused feeling. Often if im asked if i need extra steroids im adamant i dont, if i start saying yes or even i dont know (usually this is coz i feel too muddled to think) my close friends and family know this means i likely need steroids. Im being tested for primary due to how confusing my symptoms are and how severe they can be - im either unlucky or have primary. Despite this i had my first abroad holiday in years and we even went snorkelling (with a waterproof waistband with hydro drawn up in it lol) so im grateful for friends whove known me since before my diagnosis and have spent so much time with me they know what to do in basically any situation!

Really struggling currently

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Thank you for being honest and sharing your feelings. Living with Addison’s is so difficult and overwhelming. I have had it for 3 years and have not had a crisis but it terrifies me. You are not alone, things will get better. Keep sharing your story ❤

Wishing for a cortisol monitoring device soon.

It took 22 years for my diagnosis. I get what you mean about getting used to feeling crappy. It doesn't feel unusual anymore so doesn't ring alarm bells the same.

Hello my friend. I'm excited for you and hope your scholastic career goes well. It sounds like you and I do the same thing---think we failed and are super surprised when we do well. BTW, check your email. I'm sending you something you may enjoy if you have time to use it. Lots of love from the other side of the pond.😀 📖

Thank you for this. I have HSD and suspected HEDS awaiting diagnosis. I have chronic pain. I'm currently my neck and shoulder muscles are stiff and spasming, My hip is stiff and sore and I'm awaiting knee surgery for a torn ligament in a previously dislocated knee. I'm 37 and my mobility is affected. I got engaged last year and cant imagine being in a place to plan my wedding. I wonder is it a flare? Awaiting rheumatology in Ireland. Its like a vicious cycle I try to exercise for strength and hurt myself. I don't find it easy to open up about it I have ADHD and I'm not a great communicator. This makes me feel less alone.

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Girl, you are sooo beautiful ❤

Love and prayers you wayyy..❤

Thank you for sharing this. It kills me sometimes that there isn’t a better representation of what it is like to live with Adrenal Insufficiency out there. I appreciate you sharing your symptoms with the world. I’ve thought about doing it for a couple years now but haven’t been able to bring myself to do so. Much love to you from a fellow spoonie. 🫶🏼

❤ I'm so happy that you had these 2 positive experiences Jen, that is so good and inspiring 😍 Darkness and silence are lush 🥰 "Socially done" - best quote ever! Love the photo of you there and the outfit, x I really enjoyed the movie "Inside Out 2" at the cinema and I really loved the character for one of the new emotions "anxiety" and am so grateful that I didn't get anxious 🙏 Love you Jen 🩷

I’ve just found your videos regarding Addison’s. I finally have a doctor listening to me. Five years ago I had a CT scan revealing tumors on both adrenals. Nothing was done nor was I told it could be why I was feeling so sick. They all said it was my long ago diagnosed Hashimoto Thyroiditis. But finally a doctor heard me as I’ve been literally debilitated since February. I can’t get out of bed some days due to the heavy feeling in my limbs, brain fog, muscle and joint pain, hair loss, and so much more. I’m waiting on an appointment with an endocrinologist. My doctor said that she was going to ask for an appointment within the next week as she’s concerned about my wellbeing. Yet, I still fear I’ll hear it’s only my thyroid or it’s all in my head. I’ve been told that regarding my symptoms for nearly 30 years. Thank you for your content.

I think you are amazing! Doing what you did despite how difficult it was, continue making yourself proud.

Such a hard road you are on. I have secondary adrenal insufficiency due to a pituitary tumor. Tumor was diagnosed then a few months later i ended up in the emergency department where they discovered how low my cortisol was. I have never felt that bad in my life (age 70). Had the tumor removed in 2018 and just had a second surgery 2 weeks ago since tumor grew back. So have been on the adrenal insufficiency path over 5 years now. Sending all the positive energy i can you way from the west coast USA.

Thank you for bringing awareness to this important topic! I am in the process of trying to see if I have Addison’s. I have almost all of your symptoms and honestly feel like I’m dying. It’s been 2 months of begging doctors to take me seriously. I’m barely hanging on. I did have a cortisol test this morning but it was a 43 which is high! I’m so confused as all of my symptoms align with adrenal insufficiency. 🤷🏻‍♀️ I’m so thankful for you sharing your story, thank you!

God bless you Jenn...i woke up with a bit of golden glow to my skin with vililigo on my cheeks i also have Asperger's and am on the spectrum which can be a double edged sword im 42 and lije yourself i lived with this and my body found ways to cope and adjust but still leaves yo in bad shape despite relaxation in life...take care my fellow adesonian

Im trying to get a diagnosis wven though I have hyperpigmentation and every other illness associated with this sickness

I too get very (!) “fuzzy” logic/thinking during a crisis! I’ve learned I cannot trust my mind during an episode. Unfortunately I can sound quite convincing to relatives and friends saying I’m ok when I definitely not ok.

Do you have MCAS too? MCAS/EDS/POTS often go together per NORD. I have all three and weirdly have Secondary Adrenal Insufficiency as well. I’m finding more people who have all 4.

Me too. Bad one today.

My son and I have EDS,pots,ASD,and possible addisons,I ha ve dry mouth so much,spending a fortune on zylimelts,from Amazon,for it!

I can relate to many things you mentioned. I have been diagnosed since 12/1999 after many years of being unwell. The one thing you said at the end is key “take one day at a time” . It’s a lot to manage and sometimes one moment at a time is needed. ❤ Your videos are helping others ❤️

My 10 year old is currently in the hospital, had a crisis. I’m waiting on my bloodwork to come back. We have both been suffering for years with no answers. Logging is a great idea! It’s something I was doing before the diagnosis because we couldn’t figure out what was wrong with us. One thing the nurse said to us when explaining the med dosage was that emotional stress won’t affect it. That made no sense to me so I’m very glad you mentioned that in the video and I’ll have to ask more about that. Both my son and I deal with anxiety. God bless you on your journey, life is so extremely difficult in this broken world, I just cling to faith in Jesus and a much better life after this one ❤

Do a raw vegan diet

Go Carnivore so healing! Check out dr Berry and Dr Chaffe also dr baker

My daughter-in-law was finally diagnosed when she had an adrenal crisis. She almost died... She suffered for years with undiagnosed Addisons...her symptoms had been diagnosed as Migraine...her chronic illness affected her and my son's marriage which ended in divorce. B/c it got worse gradually he believed she was lazy, taking advantage of him b/c he ended up doing all the cooking, cleaning, shopping, etc while she ended up laying on the sofa all day watching TV, video, or sleeping/napping. She blamed him for the way she felt. I always knew something was wrong medically but she'd seen doctors and had been given a diagnosis and she was so tired, I'd assume, that she didn't have the energy to deal with anything. The sad thing is there were clues going way back to her 20's/30's/40's...she'd bee tested for TB multiple times and told they were false positives...that history is the thing that pointed the doctors caring for her in the hospital in the right direction b/c often the destruction to the adrenal glands is due to TB. She's gotten her life back tog and is doing much better now. It is sad though that the marriage was destroyed b/c of the illness going undetected for so long. She will always be my dil in spite of the marriage ending. I miss our history and good times tog as a family. I too have a chronic illness (vestibular migraine) and totally understand how difficult life is living with such.