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.
You have the perfect support system but yes if they are not available you need a back up plan in case you cannot advocate for your own care. Take care friend ❤️
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
Hi unfortunately this has been my experience too. I was denied fluid and steroids at my last visit. Had heart attack & heart failure. Put on diuretic. Have Addison s. Literally fought to live in hospital. See nice UK guidelines or cash download emergency care letter. He luck & stay healthy
WOW that is so scary. I am glad you took care of yourself but you shouldn't have too. I have packages of information with my hospital bags for my advocates...we can grab the bag and GO! It is a stressful and scary situation for everyday for sure. Ignorance with this illness is SCARY and ends lives of people with adrenal insufficiency. My website I have some documents you can check out that you can download for free if you like www.chronicallyfitcanada.com ❤️ Take care friend ❤️
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?
Well..we are never 100% safe depending on the situation and low is for sure a sign that we are not he wrong path and something is not right. Could you have a conversation when he is not low and to express your concern and the importance of extra meds. If the situation is dire it could lead to devastating results. I know when I am low sometime reasoning with me is not possible and I get stubborn about NOT taking extra...my family is persistent and stern and I will take my meds...good luck ❤
I think it is good for the person appearing "low" to be reminded about their meds. Sometimes, when I'm experiencing low cortisol symptoms, my thinking isn't the most logical, and I don't necessarily come to even think that some extra cortisone might help me. That saying, while being "low" I might get irritated about someone saying what to do. It might be hard to admit that I might have forgotten a dose. Usually when my mom asks if I have taken my med and I've forgotten to take a dose , I reply that I have and when she's not seeing I take my meds as soon as possible.😂 I'm still thankful for the reminder. When I'm low, I just feel bad and get easily irritated. That doesn't take away the gratefulness that may come later on when I start to feel better and my brains start to work and thinking become clearer. It's wonderful if you can help someone near you asking if they've taken their meds. Everyone forgets their meds sometimes and might need help in remembering to take them. Greetings from Finland!
@@sdegu5885 COMPLETELY AGREE..I am the same and I know afterwards if comes from a loving place and recognize I WASN'T MYSELF.....my family goes from family to medical professionals to make sure I take my meds..my life depends on it. ❤
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.
You have the perfect support system but yes if they are not available you need a back up plan in case you cannot advocate for your own care. Take care friend ❤️
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
It is so scary. Low for me can really affect my mental state. Take care friend and be strong ❤️
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
Hi unfortunately this has been my experience too. I was denied fluid and steroids at my last visit. Had heart attack & heart failure. Put on diuretic. Have Addison s. Literally fought to live in hospital. See nice UK guidelines or cash download emergency care letter. He luck & stay healthy
Where do I find these resources? Sorry to hear you also had a similar experience.
WOW that is so scary. I am glad you took care of yourself but you shouldn't have too. I have packages of information with my hospital bags for my advocates...we can grab the bag and GO! It is a stressful and scary situation for everyday for sure. Ignorance with this illness is SCARY and ends lives of people with adrenal insufficiency. My website I have some documents you can check out that you can download for free if you like www.chronicallyfitcanada.com ❤️ Take care friend ❤️
UNBELIEVABLE...we need to be prepared...this is so common and completely unnecessary ❤️
Have you been on the Addison's Disease Self Help Group UK, NADF, Canadian Addison's Disease Society...all great resources of documents. ❤️
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?
Well..we are never 100% safe depending on the situation and low is for sure a sign that we are not he wrong path and something is not right. Could you have a conversation when he is not low and to express your concern and the importance of extra meds. If the situation is dire it could lead to devastating results. I know when I am low sometime reasoning with me is not possible and I get stubborn about NOT taking extra...my family is persistent and stern and I will take my meds...good luck ❤
I think it is good for the person appearing "low" to be reminded about their meds. Sometimes, when I'm experiencing low cortisol symptoms, my thinking isn't the most logical, and I don't necessarily come to even think that some extra cortisone might help me.
That saying, while being "low" I might get irritated about someone saying what to do. It might be hard to admit that I might have forgotten a dose. Usually when my mom asks if I have taken my med and I've forgotten to take a dose , I reply that I have and when she's not seeing I take my meds as soon as possible.😂 I'm still thankful for the reminder. When I'm low, I just feel bad and get easily irritated. That doesn't take away the gratefulness that may come later on when I start to feel better and my brains start to work and thinking become clearer.
It's wonderful if you can help someone near you asking if they've taken their meds. Everyone forgets their meds sometimes and might need help in remembering to take them.
Greetings from Finland!
@@sdegu5885 COMPLETELY AGREE..I am the same and I know afterwards if comes from a loving place and recognize I WASN'T MYSELF.....my family goes from family to medical professionals to make sure I take my meds..my life depends on it. ❤
Hello! Is Anyone here effectively treating AD with FUNCTIONAL MEDICINE in Toronto, Canada??🙏🇨🇦