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Jennifer Poyntz
Ireland
เข้าร่วมเมื่อ 5 ก.พ. 2020
Hi, my name is Jen! I am a PhD candidate at Trinity College Dublin. As a doctoral student and writer, I am also a neurodivergent, chronically ill life coach and founder of NeuroNarratives, a space for sharing fictional accounts of life as a neurodivergent adult.
As an autistic woman with ADHD, I create neurodivergent lifestyle content with the aim of inspiring and connecting with other late-diagnosed neurodivergent women and their families and friends. It is my wish that, above all, neurodivergent adults will live confident, fulfilled lives. I do this through sharing vlogs, video essays and educational videos informed by my own life experience.
Website: - www.jenniferpoyntz.com
Instagram: @jenniferpoyntz_
Contact: jenniferpoyntzyt@gmail.com
As an autistic woman with ADHD, I create neurodivergent lifestyle content with the aim of inspiring and connecting with other late-diagnosed neurodivergent women and their families and friends. It is my wish that, above all, neurodivergent adults will live confident, fulfilled lives. I do this through sharing vlogs, video essays and educational videos informed by my own life experience.
Website: - www.jenniferpoyntz.com
Instagram: @jenniferpoyntz_
Contact: jenniferpoyntzyt@gmail.com
Is an Autism Assessment Worth it? | My Experience |
Hello friends,
I hope you’re doing well. August has been kind to you so far! I hope that this video finds someone who needs to hear it and is helpful and kind. I want to just reiterate a few things that I hope I was clear about in this rambling video - self-identification is entirely valid. No one ‘needs’ to pursue a formal assessment for autism for any reason if they do not want to. For me, this video was more an opportunity to sit down and verbalise what I try to say when I am asking if pursuing an assessment was ‘worth it’ for me.
If you’re currently on this journey, I truly send you nothing but love and a wish for a long life of glorious self-acceptance!
Until next time,
Jen x
Instagram: jenniferpoyntz_
Website & Blog: www.jenniferpoyntz.com
Neurodivergent Thoughts and Writing: neuro_narratives
I hope you’re doing well. August has been kind to you so far! I hope that this video finds someone who needs to hear it and is helpful and kind. I want to just reiterate a few things that I hope I was clear about in this rambling video - self-identification is entirely valid. No one ‘needs’ to pursue a formal assessment for autism for any reason if they do not want to. For me, this video was more an opportunity to sit down and verbalise what I try to say when I am asking if pursuing an assessment was ‘worth it’ for me.
If you’re currently on this journey, I truly send you nothing but love and a wish for a long life of glorious self-acceptance!
Until next time,
Jen x
Instagram: jenniferpoyntz_
Website & Blog: www.jenniferpoyntz.com
Neurodivergent Thoughts and Writing: neuro_narratives
มุมมอง: 88
วีดีโอ
PhD Journey Update & Scholarship Interview Experience & Anxiety
มุมมอง 6121 วันที่ผ่านมา
Hi Friends, Happy August! I hope you’re doing well! This is just a chatty video about my future plans in academia and my recent academic scholarship interview experience! I found this experience supremely stressful, and it’s helped me realise how little perspective I have on my own performance on any given day. This, in itself, was a profound learning curve for me! Either way, I am glad to have...
The Venn Diagram of My Life - When Autism, Chronic Illness and Eating Disorders Overlap
มุมมอง 85หลายเดือนก่อน
Hello friends, I don’t know if I will come to regret making this video, but for right now, it feels good to sit down and chat about all the conflicting areas of ‘need’ in my life (chronic illness/neurodiversity/trauma/eating disorder). I really do understand if this video was not for you, by the way, for any reason, but especially if the topic of disordered eating is a trigger for you. I hope t...
My Eras Tour Experience - Managing Chronic Illness & Sensory Overload | Taylor Swift Concert |
มุมมอง 69หลายเดือนก่อน
Hello friends, I hope you’re all well! I know I only spoke about my Eras experience in a summary here. Still, really, it was the experience of a lifetime - one that I am so glad did not end in either a meltdown or a hospitalisation! Overall, I’m proud of how I managed (updosing my meds, managing my salt intake etc.), and I wanted to log this little (big) victory! Anyway, until next time, take c...
A Simple Sunday - Trying to Pace Myself & Embrace Chronic Illness Life
มุมมอง 912 หลายเดือนก่อน
Hi friends, The reality of this vlog made me absolutely not want to upload it. There isn’t a single inch of it that is neat or tidy or tells a cohesive story, and therefore, I thought it probably wasn’t worth uploading. But I want to remember the days I felt like this, like ‘pacing’ was new before I got it entirely down. Because I will. I hope you’re all having a wonderful day, wherever you are...
My First Adrenal Crisis Experience - Addison's Disease | Part Three |
มุมมอง 1.1K3 หลายเดือนก่อน
Hello friends, First things first, I am the furthest thing from an expert on any aspect of anyone’s else. I just have an intense internal dialogue always running about my own health issues that is borderline impossible to escape 🫠 Still, maybe I’m hoping that someday, someone who is also feeling like they’re doing something wrong with every choice they make with their bodies will see this and f...
My First Adrenal Crisis Experience - Addison's Disease | Part Two |
มุมมอง 1.3K3 หลายเดือนก่อน
Hello friends, First things first, I am the furthest thing from an expert on any aspect of anyone’s else. I just have an intense internal dialogue always running about my own health issues that is borderline impossible to escape 🫠 This is part-one and I'll upload part-three shortly! Still, maybe I’m hoping that someday, someone who is also feeling like they’re doing something wrong with every c...
My First Adrenal Crisis Experience - Addison's Disease | Part One |
มุมมอง 2.3K3 หลายเดือนก่อน
Hello friends, First things first, I am the furthest thing from an expert on any aspect of anyone’s else. I just have an intense internal dialogue always running about my own health issues that is borderline impossible to escape 🫠 This is part-one and I'll upload part-two shortly! Still, maybe I’m hoping that someday, someone who is also feeling like they’re doing something wrong with every cho...
Study & Regulate with Me | Trinity College Dublin | PhD Saturdays 📜✒️☕︎
มุมมอง 1145 หลายเดือนก่อน
Hi Friends, I’ll admit, it seems a little silly to be uploading this vlog now when, in it, I am talking about how comforting I find it to be in control of my health/medication as three days ago, I had my first Addison’s Disease crisis. But alas, here we are! I feel so lucky to be based in Trinity College Dublin and to have the option to study and exist where I do - and that’s what I wanted to s...
One Year Diagnosis Anniversary - Let's Talk Addison's Disease
มุมมอง 9896 หลายเดือนก่อน
Hello friends, It’s been a long time since I have filmed a proper sit-down video, but in many ways, this was relatively cathartic to film. I was diagnosed with Secondary Addison’s Disease or Adrenal Insufficiency on January 12th last year, and now, my life is transformed and different. Better, but not automatically easy. Today I wanted to chat about the interactions of chronic illness, autism a...
Trying my best to self-regulate after an overwhelming day at work
มุมมอง 1068 หลายเดือนก่อน
Hello friends, I know this vlog is somewhat choppy and silly and realistically, it doesn’t have a point, but I found that picking up my camera actually really helped me on this evening. Sometimes, the worst bit of a bad day at work is when I’m alone in the evening and I allow myself to stew in it. In the pain and supposed failures. Anyway, I hope you enjoyed, because I felt soothed and I guess ...
A Very Tired, Soul Weary Chat about Being Very Tired and Soul Weary I Chronic Illness Life
มุมมอง 1168 หลายเดือนก่อน
Hello friends, By right, I know that I should edit this into something succinct and snappy. Or not upload it at all. But this is the reality of exhaustion, and for some reason, it would have felt dishonest not to show each pause, each moment of brain fog and sadness. Perhaps some of you can relate - I almost hope you can't. Anyway, until next time, Jen x 💛 Instagram: jenniferpoynt...
Moving Back to Dublin - Managing a Chronic Illness and Facing Change
มุมมอง 699 หลายเดือนก่อน
Hi friends, I filmed this video a little over two weeks ago, and I wasn't sure I was going to upload it, but I think it will be interesting to look back on as my life changes! I hope someday I'll look back and realise that all of this work to try and get my chronic illness under control was worth it! Anyway, I hope you enjoyed it. Love, Jen x White Petals by Keys of Moon | soundcloud.com/keysof...
A Flash of Energy in a Chronically Ill Life
มุมมอง 6711 หลายเดือนก่อน
I actually filmed this a while ago, but haven't had an energetic day since, which feels ironic. Either way, I hope you enjoyed! Instagram: jenniferpoyntz_ Twitter: jenniferpoyntz Website & Blog: www.jenniferpoyntz.com Coaching Business: www.luminarycoaching.ie
Yale Writer's Workshop - Meeting Literary Agents | Aspiring Author
มุมมอง 48ปีที่แล้ว
Hi all! I hope you enjoyed this random little video! I know it's not very detailed and is more stream-of-conscious, but this was such a big deal for me, and I knew I would want to document it! The Yale Writer's Workshop was a wonderful experience, especially as an aspiring writer. I would highly recommend it! The online option was also very, very worthwhile. Until next time, Jen Instagram: @jen...
Yale Writer's Workshop 2023 - My First Day
มุมมอง 52ปีที่แล้ว
Yale Writer's Workshop 2023 - My First Day
Moments Managing My Chronic Illnesses - Adrenal Insufficiency, Ehlers-Danlos Syndrome ❁
มุมมอง 240ปีที่แล้ว
Moments Managing My Chronic Illnesses - Adrenal Insufficiency, Ehlers-Danlos Syndrome ❁
Moving Home In Your Late Twenties - A Video Essay
มุมมอง 76ปีที่แล้ว
Moving Home In Your Late Twenties - A Video Essay
A Day of Balancing It All - Writing, Beach Trips, PhD Work
มุมมอง 89ปีที่แล้ว
A Day of Balancing It All - Writing, Beach Trips, PhD Work
Chronic Illness Chats - Living with Addison's Disease, Weight Gain on Steroids & Body Image 🦋
มุมมอง 373ปีที่แล้ว
Chronic Illness Chats - Living with Addison's Disease, Weight Gain on Steroids & Body Image 🦋
A Chatty, Busy Day - Learning to Live with Adrenal Insufficiency 🦋
มุมมอง 72ปีที่แล้ว
A Chatty, Busy Day - Learning to Live with Adrenal Insufficiency 🦋
A Day of a New Normal - Adrenal Insufficiency Life & PhD Work 💛
มุมมอง 162ปีที่แล้ว
A Day of a New Normal - Adrenal Insufficiency Life & PhD Work 💛
Reintroducing Myself to Mornings ✨ Chronic Illness Recovery - Living Slowly ✨
มุมมอง 73ปีที่แล้ว
Reintroducing Myself to Mornings ✨ Chronic Illness Recovery - Living Slowly ✨
A Gentle Day During Chronic Illness & Burnout Recovery
มุมมอง 55ปีที่แล้ว
A Gentle Day During Chronic Illness & Burnout Recovery
Rose of Tralee - Spoken Piece - Autistic Joy
มุมมอง 1932 ปีที่แล้ว
Rose of Tralee - Spoken Piece - Autistic Joy
Rose of Tralee - Full Interview with Dáithí O'Sé - AsIAm Ireland
มุมมอง 9852 ปีที่แล้ว
Rose of Tralee - Full Interview with Dáithí O'Sé - AsIAm Ireland
A Sunday Rest Day - ✨ Finding peace in the small things ✨
มุมมอง 822 ปีที่แล้ว
A Sunday Rest Day - ✨ Finding peace in the small things ✨
A Happy Monday of Work - Resetting for the Week & College Work 🖊️
มุมมอง 522 ปีที่แล้ว
A Happy Monday of Work - Resetting for the Week & College Work 🖊️
A Happy Week in my Life ~ Baking a Cake, Murder Mystery Party & Work
มุมมอง 502 ปีที่แล้ว
A Happy Week in my Life ~ Baking a Cake, Murder Mystery Party & Work
Just Music, No Words - A Dublin Vlog of an Sensory Overwhelmed Autistic
มุมมอง 382 ปีที่แล้ว
Just Music, No Words - A Dublin Vlog of an Sensory Overwhelmed Autistic
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 ?
You're definitely right about the need to have someone with you! This experience taught me the importance of those things - I would have somewhat not believed how vital communication is! I have an emergency letter with me now!
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.
Also, if it helps, I have all the diagnoses you listed at the end minus the ED and over 10yrs or so I've learnt to work with my Adrenal Insufficiency and understand it better even if mine is very unpredictable
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
Sending you love.
@@jenniferpoyntz thank you it all helps,x
❤❤❤❤❤❤❤❤❤❤❤❤🎉🙏🙏🙏🙏🙏🙏🙏🙏
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 ❤
Thank you so much for these kind words - some days just knowing I am not alone holds me together! I am sending you such love and wishes for your wellness.
Wishing for a cortisol monitoring device soon.
Absolutely feeling the exact same! Fingers crossed.
They're quite close to inventing one! That's my understanding. That they're getting close to study phases
But also we need a cortisol "epipen" genuinely now
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.
I've been ill for over 20 years, too. With lots of mysterious and debilitating symptoms, lost all quality of life. Been labelled many times, with various labels, until basically gave up trying to get help. For years I didn't even see a doctor, chose just to suffer alone at home, awaiting for my death, which would grant me freedom from this torment called "life". But now, I maybe getting some answers, just maybe, I'm not too hopeful yet, but I have elevated ACTH, several times the upper maximum of normal. Cortisol was in the middle of normal though. I have more labs upcoming. I don't know. I very much identify with what you said about getting used to feeling crappy. I no longer know what "normal, comfortable and healthy" feels like. Or did I ever know? I can't tell. To me, normal is crappy, tormenting and unbearable.
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.
❤❤❤❤❤❤❤
I have HSD diagnosis but likely HEDS. I really struggle with the mental side of things, I don't present "bad enough" to some people and I start to question myself but because of this I over exert myself and although my pain tolerance is relatively high I end up burning myself out, I become depressed and very angry towards others and all my energy completely disappears so I just stop taking care of myself. I'm constantly in this cycle of feeling the need to keep up, sometimes I think I do and can block out the pain which negatively impacts my mental health, thankfully I haven't experienced a dislocation but I have a few joints I can subluxate on queue without pain but my biggest struggle is the weakness and floppiness of my spine and legs, brushing my teeth, showering and doing dishes as well as cleaning absolutely kills me so I constantly take breaks unless I push myself through to burn out.
Girl, you are sooo beautiful ❤
Love and prayers you wayyy..❤
Thank you so much!
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. 🫶🏼
Thank you so much for using some of your precious energy to comment and for sending love. I don't think I'm doing a marvellous job of representing AI - there's a lot I want to say but sometimes I struggle to have the energy to combat my brain fog and communicate coherently! Maybe over time I'll get to structure my thoughts a bit more! Thank you so much for watching. Sending you love and energy x
❤ 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 🩷
Love you too Katie! Thank you so much. I'm just so glad I didn't have a meltdown 😭 xx
@jenniferpoyntz be super proud because you are superwoman 🩷 meltdowns are soo difficult to predict, and sometimes the cause is unknown until days or weeks after, and they are soo draining ❤️ Ilyssm, x xx
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.
Thank you so much for using some of your energy to watch but also to write a comment - I know that rationing energy is a nightmare, so I really appreciate it. I am SO sorry to hear that this is what you are experiencing/going through at present. I hope they listen to you, and think outside the box and that you are given the space to advocate for yourself.
I think you are amazing! Doing what you did despite how difficult it was, continue making yourself proud.
Thank you so much for saying that! I wonder if I will eventually come to agree with you - I hope so! 💛
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 so much for commenting 💛 This whole experience can be quite isolating so it is nice to know that across and ocean someone feels the same. I hope you are doing the very best you can be!
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!
Oh, bless you. I'm having the hospital test for Addison's in two days time (U.K). Can't wait to get more answers. I wish you well and hope that you get to the bottom of things
I am truly hoping all is going well for you! This road, the road to diagnosis and all the comes after is so terribly overwhelming and demoralising. Thank you so much for using your energy to write your comment 💛
Have you looked at symptoms of Cushing's Disease? That can cause high cortisol. (I'm not a doctor so this is something you can ask your doctor about if you want to). I hope you get accurately diagnosed and properly treated asap for whatever is ailing you. Sorry you are going through this.
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
Thank you so much! It's certainly not easy, but at least we know that others like us exist!
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.
I think that's what I realise now post-crisis after hearing my family talk about it. I sounded entirely in control, but nothing I observed or thought made sense! It's one of the scarier aspects to me because I don't think I can be trusted to entirely advocate for myself because I tend to not want a fuss to be made (like an ambulance etc.).
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.
I haven't been diagnosed with MCAS, but I do have medication for it as I seem to have a lot of symptoms, though not consistently. It seems to flare when my other conditions do (or when I'm stressed)!
Me too. Bad one today.
Wishing you well.
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 ❤
Oh I am so hoping that you and your child are well now. Or as well as any of us can be when handling all of this! I don't understand how to separate emotional and physical stress - and my body certainly doesn't know the difference!
Do a raw vegan diet
My husband and I were raw vegan for quite a while and it’s honestly the healthiest I had ever been in my life. I recently switched to meat out of feeling desperate. What are your thoughts on Addisons and how raw vegan could help?
@@myflourishingfam I’ve no idea. Speak to a carnivore person. I don’t see any benefits myself but they swear by it. 🤷♂️
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.
Thank you for continuing your loving relationship. Losing family is so hard in divorcd
Thank you so much for sharing that with me - that is really powerful for me to read. It's interesting you mention TB - my doctor recently recommended I get tested for latent TB as a cause as such for my Addison's hasn't been found. I'm sure having you supporting her, in spite of the divorce, is more meaningful than you can even realise. I am thinking of you and your chronic illness too. May your days be peaceful.
I understand your dil. Pretty much carbon copy of my experience. I could barely get out of bed each morning, I felt like death for years. My partner simply accused me of being so incredibly lazy and just wanting to rob him of his money. It was terrible years, in many ways. The lack of knowledge to what I was going through, the lack of care in the medical community and lack of compassion from my partner. It’s been 11 years since the diagnosis.
Hi there how
My daughter-in-law was diagnosed not long ago with Addisons'...she suffered for a long time, having no idea what was wrong with her...she had an adrenal crisis that put her in the hospital and that's when the doctors finally figured out what was going on with her. I've read it can take decades to get a diagnosis b/c symptoms don't usually develop until 90% of the adrenal cortex has been damaged. She's doing much better now that she is on meds but it's still hard for her..she's in her mid-fifties...has suffered for a long time...people thought she was lazy, unmotivated etc...over the years she'd had a lot of positive tests for TB..was told they were false positives...when she was in hosp. with the crisis and told they were going to test her for TB she told them she'd been tested over the years but they were false positives...the doctor smiled b/c that's when he knew he was on the right track. She is learning as she's living with her disease. I understand how hard it is b/c I've had undiagnosed vestibular migraine for decades..I'm 74 and only found out 2 years ago what had been wrong with me since I was a young child. I'm no exception...I personally know 2 other people with VM and there are millions like us. All the best to you in your journey. Perhaps you can help others by sharing it here.
Thank you so much for taking the time to write that and share it with me. I hope you and your daughter-in-law are doing well, and we can be at any point in our lives when managing such conditions! It's honestly so hard to reconcile the narratives we receive from other people about how we just need to wake up earlier, eat healthier, try harder, etc. It can be equally as hard to reconcile how long a diagnosis took, and all of the time lost. I truly wish you the very best.
Hi Liz how are you doing today and how is my day today is my birthday
Hi there how are so
Hello and my wifee has addison too. I just figured out when it's hot... aka the summer... go to the urgent care and ask for saltine bag before the storm comes but pay attention to your body because it will give you alot of signs before dehydration comes...thanks for your story and stay strong
Thank you so much for commenting this. I am trying to become more conscious of what a dehydration sign is versus what a sign of low cortisol is - it's tough!
Do u happen to have Ehlers Danlos Syndrome???? Or dysautonomia???
I believe she has hEDS
In some of her other videos she did say she has EDS...not sure about the dysautonomia.
Yes, I do! I was diagnosed with hEDS and POTS a while ago, though in recent years (until adrenal insufficiency became so serious), I managed my POTS reasonably well, so I didn't talk about it as much.
Like CAH-X EDS?
Oh dang! Diagnosed with hEDS as well! Sending hugs!
thank you Jeninifer, beautifully put into the words I could not find. A fellow Addison. impossible to advocate for oneself in a crisis. I wish you love, peace and happiness always and will check in from time to time. big hugs
I wish you peace too. May we both have only contented days ahead, we deserve no less.
I'm so glad you shared this. Thank you so much! It sounds like such a harrowing experience. I'm glad you're okay. You're a brave one.
Thank you so much for commenting this. It was a kindness I needed to see, and I am very grateful.
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Thank you for sharing this. I have complex heath problems in addition to Addison’s. It is overwhelming at times. Being ok with not-knowing, it is something I am trying to get comfortable with.
I too am 'trying' to get used to this everyday, and it's a real work in progress!
Love you❤❤. Let's zoom soon. I'm still getting knee replacement two under control. All is good g as it should. I'm sorry you had this experience.
Please! I've missed you so much x
I wish I could hug you, it's important that you're sharing this important information 🧡 x
Thank you sweat pea, you're the kindest soul x
@jenniferpoyntz thank you, I love you soo much Jen 🩷
I injured my shoulder and had that exact same headache, when I felt nausea with it I realized I needed to updose, probably because of the injury? It is so hard to know- you don’t want to overuse the steroids and you really don’t want to underuse them. I wish we had a sensor like diabetics do. ❤❤ I am glad you are recovering!
It's such a minefield! I get caught up in avoiding things like moon face, and then I don't prioritise my health! It feels like we can never win!
Stress dosing steroids for a few days then quickly tapering back down to your usual doses, after an injury, is not harmful nor will cause Cushingnoid effects. ❤
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Thank you for this, so much! You just made sense of something that I've been dealing with for 40 years. My doctor gave me almost no information, and none of my research has been as informative about the way this actually impacts us. ❤
Oh my heart swelled so much reading this! I am so sorry that you have suffered. I'm going to make an updated video soon, and this has made me feel like it's worth it to keep talking about this stuff.