Omgoodness sweet Jill ❤I can’t thank you enough for your videos for this channel ! You are so brave to do what you are doing! I am your age and I have Addison diagnosed for 12 years and I feel that you are my voice ❤ I feel this too so often and I just try to suck it up, cry when nobody is watching and fake it till I make it! I have 2 beautiful daughters and going through a rough separation and you showing up and talking to us makes me feel a little bit more “normal “ Cos you know we tend to compare ourselves to people who don’t have this condition and that’s wrong 😢. we are different, we are special and we have to educate ourselves and others to know it’s OK 👍 . Hugs from Portugal sweetie
Thank you PAULA....yes you are right we are special and misunderstood and need to realize what is normal for us. education and awareness is so important and i love the little family of AI we are building around the world. Stay strong and keep fighting
I needed this video today! I had a pretty good day yesterday, where I didn’t feel like I was trudging through quicksand, and I did a bit on the side of “too much”. I went to the store, came home and baked keto donuts, made dinner… This morning, I woke up with a migraine. I took my morning dose, and kept waiting for it to “kick in”, but I never felt that push or uptake in energy. I have to updose when I have migraines or they knock me completely out. I ended up pushing myself because I had an appointment to go to with my aunt. What you said about even listening and just being present when low is so true! My mom tried to engage me in conversation multiple times today, and I just wasn’t engaged at all. Hugs and prayers from Corpus Christi, TX! ❤😊
Completely understand friend...and yes i wait for that "KICK IN"..and sometimes it is enough and sometimes it isnt..so hard when we are just guessing. We need to keep living some days and cant rest and it makes us worse. And engaging when we are like that is almost impossible and so frustrating (and heart breaking)..thank you for your comment and take care
Jill, I go through this every day. It is tough. I’m just glad I’m not the only one I know how you feel. It feels like you’re slowly dying inside. Then you want to be the person you used to be and it’s so hard. One beautiful thing about this disease I get to talk to Jesus Christ one on one .
Totally understand Jill. Its so hard when you have bad days. I get depression and crying. And frustration..But i do listen to muy body and rest. And not be too hard on myself. It is frustrating that we cant measure our cortisol. Your dad would be so proud of you Jill. All you are doing to bring awareness about life with Addisons. You have helped me so much Jill. So gratefull you started this channel.❤❤❤❤
Thank you so much for this sincere video, dear Jill! You helped me a lot with it, I am crying just watching it. I guess I am having one of those low cortisol days and would just like to stay in my bed, but had to go to work, fake it like there is nothing wrong with me (I don't get a lot of understanding from people surrounding me at my job). Uhhh, the struggle is so real and so complex. I needed to hear someone who knows how I feel. Thank you, sending much love to you!
My Endo seems to totally ignore the mental health symptons? Not very helpfull? But what do they know. They dont have AI. As i told my Endo when i was crying my eyes out at consultation. And getting very frustrated and cross that he was not listening to me. Grrrr.!!!
Awwwww. Jill, you are such an amazing person 💖 Thank you for making this video on a day when you definitely did not want to make a video. I am sharing clips of this with my teens. Your videos really help us so much 🫂 I'm on 20mg and have zero energy to do anything most days 😪
Thank you for sharing your experience. I have wondered how much hydrocortisone somebody with Addison's disease needs to take per day. I have adrenal insufficiency and lately I have been finding after a crash that I have had to take between 40 mg to 60 mg/ dat just to not go into deep symptoms and crash again. I also found that if I don't increase my dose when it feels like I need it, I just keep spiraling downward. I have found that I have to increase it very high sometimes before I can bring it back down and this has been a very good lesson for me to learn. Do you feel that you have any percentage of your adrenal gland function left or do you think it's completely gone?
Hey there...great question...I really don't think I have any function left at all but not sure...I did have an MRI a long time ago on my adrenals and they said they were pretty much non existant...but we sound very similar in our experience...I require a lot daily but to recover as well...take care!
@@chronicallyfit_withjill Thanks for the response, yeah when I hear about people with Addison's having good days and bad days, it makes me wonder about how our bodies replenishes its reserves. I'm just speculating, but if the body is better some days vs. others it makes me wonder if some sort of reserve has been built up by the adrenals (whatever % function that may be) for those good more stable days to occur. I know for me if I take more cortisol for a couple days then I can take less in the following days which makes me think that my adrenals got some rest and increased my reserves. Maybe there are other ways for the body to restore its reserves that aren't directly related to the adrenals though. This is something that I have wondered about a lot so I was just curious if you had any insights.
@@Tig78-9 For me I don't think I have any function left in my adrenals and good days are just getting the meds/rest/activity in balance which it tricky to do. My rest days I think let me recover and stabilize my meds and then ill have a good day..it is so hard to tell what is going on when we can't measure our blood cortisol levels...hopefully one day and we can monitor it Until then we guess....
@@chronicallyfit_withjill If you feel comfortable sharing I wonder if you have you ever experimented with taking absolutely as much cortisol as it feels your body needs without letting mainstream endocrinologists influence what feels is right for your body? If so, what's the most hydrocortisone you have ever taken in a day not counting solu cortef shots during a crisis? I remember reading in the past that a person who has had their adrenals removed needs about 40mg HC /day but I'm staring to doubt that number.
@@Tig78-9 Hey there with my family dr who manages most of the AI we have my dose at about 70 mg HC a day...I show no signs of excess...most I have taken in a day...hhhhmmmm not really sure. If I take more it is based on low cortisol symptoms and i often do that gradually through the day until I feel better and that is up to about 30 mg I have in the past. So hard to guess what we need...I think we are low way before we actual experience symptoms
Thanks for sharing. I’m having a similar day and want you to know this video helps! Take time for you first then you can be strong for others.
Thank you Mark...I did...movie time, bed early and extra meds...thank you...hope you are feeling better as well
Omgoodness sweet Jill ❤I can’t thank you enough for your videos for this channel ! You are so brave to do what you are doing! I am your age and I have Addison diagnosed for 12 years and I feel that you are my voice ❤ I feel this too so often and I just try to suck it up, cry when nobody is watching and fake it till I make it! I have 2 beautiful daughters and going through a rough separation and you showing up and talking to us makes me feel a little bit more “normal “ Cos you know we tend to compare ourselves to people who don’t have this condition and that’s wrong 😢. we are different, we are special and we have to educate ourselves and others to know it’s OK 👍 . Hugs from Portugal sweetie
Thank you PAULA....yes you are right we are special and misunderstood and need to realize what is normal for us. education and awareness is so important and i love the little family of AI we are building around the world. Stay strong and keep fighting
I needed this video today! I had a pretty good day yesterday, where I didn’t feel like I was trudging through quicksand, and I did a bit on the side of “too much”. I went to the store, came home and baked keto donuts, made dinner… This morning, I woke up with a migraine. I took my morning dose, and kept waiting for it to “kick in”, but I never felt that push or uptake in energy. I have to updose when I have migraines or they knock me completely out. I ended up pushing myself because I had an appointment to go to with my aunt. What you said about even listening and just being present when low is so true! My mom tried to engage me in conversation multiple times today, and I just wasn’t engaged at all.
Hugs and prayers from Corpus Christi, TX! ❤😊
Completely understand friend...and yes i wait for that "KICK IN"..and sometimes it is enough and sometimes it isnt..so hard when we are just guessing. We need to keep living some days and cant rest and it makes us worse. And engaging when we are like that is almost impossible and so frustrating (and heart breaking)..thank you for your comment and take care
Jill, I go through this every day. It is tough. I’m just glad I’m not the only one I know how you feel. It feels like you’re slowly dying inside. Then you want to be the person you used to be and it’s so hard. One beautiful thing about this disease I get to talk to Jesus Christ one on one .
Yes it is so hard not to feel like yourself and feel to lost...I know how you feel ❤️
Thank you Jill for this episode..❤❤❤
Thank you, this is really helpful. Just hearing someone else's experience of being low.
Thank you for your comment...I hope it is helpful!
Totally understand Jill. Its so hard when you have bad days. I get depression and crying. And frustration..But i do listen to muy body and rest. And not be too hard on myself. It is frustrating that we cant measure our cortisol. Your dad would be so proud of you Jill. All you are doing to bring awareness about life with Addisons. You have helped me so much Jill. So gratefull you started this channel.❤❤❤❤
Yes i agree we do fake happiness. And then we are alone and cry.😢😢😢
Thank you so much for this sincere video, dear Jill! You helped me a lot with it, I am crying just watching it. I guess I am having one of those low cortisol days and would just like to stay in my bed, but had to go to work, fake it like there is nothing wrong with me (I don't get a lot of understanding from people surrounding me at my job). Uhhh, the struggle is so real and so complex. I needed to hear someone who knows how I feel. Thank you, sending much love to you!
Take care friend..we are all in this together! Stay strong!
My Endo seems to totally ignore the mental health symptons? Not very helpfull? But what do they know. They dont have AI. As i told my Endo when i was crying my eyes out at consultation. And getting very frustrated and cross that he was not listening to me. Grrrr.!!!
Awwwww. Jill, you are such an amazing person 💖 Thank you for making this video on a day when you definitely did not want to make a video. I am sharing clips of this with my teens. Your videos really help us so much 🫂 I'm on 20mg and have zero energy to do anything most days 😪
Thank you friend! I am glad you find the videos helpful..yes it was a tough one to do but so glad I did it!! Take care
Thank you for sharing your experience. I have wondered how much hydrocortisone somebody with Addison's disease needs to take per day. I have adrenal insufficiency and lately I have been finding after a crash that I have had to take between 40 mg to 60 mg/ dat just to not go into deep symptoms and crash again. I also found that if I don't increase my dose when it feels like I need it, I just keep spiraling downward. I have found that I have to increase it very high sometimes before I can bring it back down and this has been a very good lesson for me to learn. Do you feel that you have any percentage of your adrenal gland function left or do you think it's completely gone?
Hey there...great question...I really don't think I have any function left at all but not sure...I did have an MRI a long time ago on my adrenals and they said they were pretty much non existant...but we sound very similar in our experience...I require a lot daily but to recover as well...take care!
@@chronicallyfit_withjill Thanks for the response, yeah when I hear about people with Addison's having good days and bad days, it makes me wonder about how our bodies replenishes its reserves. I'm just speculating, but if the body is better some days vs. others it makes me wonder if some sort of reserve has been built up by the adrenals (whatever % function that may be) for those good more stable days to occur. I know for me if I take more cortisol for a couple days then I can take less in the following days which makes me think that my adrenals got some rest and increased my reserves. Maybe there are other ways for the body to restore its reserves that aren't directly related to the adrenals though. This is something that I have wondered about a lot so I was just curious if you had any insights.
@@Tig78-9 For me I don't think I have any function left in my adrenals and good days are just getting the meds/rest/activity in balance which it tricky to do. My rest days I think let me recover and stabilize my meds and then ill have a good day..it is so hard to tell what is going on when we can't measure our blood cortisol levels...hopefully one day and we can monitor it
Until then we guess....
@@chronicallyfit_withjill If you feel comfortable sharing I wonder if you have you ever experimented with taking absolutely as much cortisol as it feels your body needs without letting mainstream endocrinologists influence what feels is right for your body? If so, what's the most hydrocortisone you have ever taken in a day not counting solu cortef shots during a crisis? I remember reading in the past that a person who has had their adrenals removed needs about 40mg HC /day but I'm staring to doubt that number.
@@Tig78-9 Hey there with my family dr who manages most of the AI we have my dose at about 70 mg HC a day...I show no signs of excess...most I have taken in a day...hhhhmmmm not really sure. If I take more it is based on low cortisol symptoms and i often do that gradually through the day until I feel better and that is up to about 30 mg I have in the past. So hard to guess what we need...I think we are low way before we actual experience symptoms