E210 - F WORD of Addison's Disease
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- Опубліковано 15 тра 2024
- This is the MOST frustrating challenge I have with living with ADRENAL INSUFFICIENCY. It is the F WORD of Addison's Disease.
Dealing with a STATIC dose of medication in a world that is forever changing and every moment it takes a bit more cortisol leads to a crippling existence of low cortisol symptoms. Living in an illness lacking the tools to measure my critical LIFE SUSTAINING CORTISOL levels I am left to fend for myself based on physical symptoms.
This is my perspective on how it feels living with the F WORD of Addison's Disease.
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One symptom I get I know I have to pause not push- is when I start looking at the floor to lay down- 😂 like seriously-no matter where I am- I need to find a bed/somewhere suitable fast to rest/sleep! I’ve had this happen at an airport. The fatigue becomes -stop everything now-rest is non negotiable! ❤ Thank you Jill
As soon as i saw the title had to do with The F Word, i knew i had to watch. I was dx a year ago and the fatigue is the worst. Thank you Jill for all you do!!
AGREE!!! Truly is the F word of addisons but does not describe what we feel!!! take care friend
Wonderful episode Jill. Active management with up dosing is the key for me. It’s so great to have advice from experienced physicians that gives us confidence to self manage. Thank you 🙏
Experienced physicians or at least ones willing to listen and learn and KEY to quality of life!!! AGREE!!
Thanks for the video Jill. Yes, fatigue doesnt really convey trhe feeling, for me its like my phone battery is at 5% and things slow right down and stop working. I can definitely relate to having to push through but id never thought that underdosing would be as impacting on my body as overdosing on steroid. So ill keep that thought in my mind, thanks for that and all the info you provide .
Thank you for the comment...and I do think the lows are SO SO hard on our bodies and wear us out over time...it is a war zone all the time inside!!
THANK YOU, JILL! I was officially diagnosed yesterday, so this is so helpful!
I am sure are relieved to have the answers to your health issues. One day at a time...I hope you find the videos here helpful friend. All the best Jill
Fatigue is still part of my daily life. Also brain fog… So challenging but one day at a time. tks for these videos!
Thank you friend...I FEEL you on that one!!
Thank you so much for sharing your experiences. This is so helpful as I navigate this diagnosis.
Thank you for the comment and watching...I hope my journey is helpful to you!!
Thank you for this video. Your idea that many are chronically underdosed is interesting and perhaps I need to explore for myself. I’m am so much better than before my diagnosis but still cannot function at the level I would like to be at and still suffer chronic “fatigue.”
To me is makes a lot of logical sense...we go down hill faster unmedicated...hard to move when your body is fighting to live!
Being in the beginning stages of diagnosis, this is both a relief and a worry. I am relieved to finally have a diagnosis but concerned about the future...
One day at a time..we have all been there but you can do this...educate yourself as much as you can, trust how you feel and fight for the best care!! You got this friend!
@@chronicallyfit_withjill Blessings to you. May the Lord strengthen and keep you in all you do... We are blessed by your efforts to bring us knowledge...
@@christiroseify Thank you friend...I am so thankful for this community we are creating and how we are all connecting...I truly hope it makes a difference
I am going through the same thing every day. I hate this disease. Never have energy to do anything. I have to sit and meditate to get up just to get up and walk . As soon as my steroids rare off my body goes straight to pain and it feels like i am carrying a bag of cement on my neck.
I get the cement feel..make sure you watch the episode from Prof Wass if you haven't yet...amazing!
Thank you for your videos I’m so glad I found someone who feels like I do . past advice you have given me has helped me a lot specially stress doseing . I still wake up in pain and crying very emotional in the morning until my steroids kick in. It’s getting better, still working with this adrenal insufficiency it’s tough but somehow I’ll make it. Thank you.
Yes, the word fatigue is such an understatement! I struggle with how to describe to other people about how I feel. I never find the right words. Shutting down seems the right choice of words. Thank you, it really helps me to listen to someone who understands ❤. Big hug your way 🤗!
I use Injectible hydrocortisone aka Solu-Cortef.
I inject .30 ml intramuscular at ONE INCH and two doses at 1/8-1/4 inch SubQ.
The deep injection is near large veins the subQ is shallow near the capillaries......and I feel ALOT better, and can go 12 hours without a dose.
But with just one dose I can only go 6 hours! Or if I am busy I can burn the cortisol real quick especially since I also take thyroid hormones which metabolites cortisol much more quickly.
Many people with both thyroid and adrenal failure are diagnosed with thyroid failure first and put on thyroid hormones only to be sent into an adrenal crisis!
Thank you for the comment and for watching...very helpful..I think I metabolize quickly as well friend.
Is there a support group? My dad’s dad had secondary pituitary induced addisons. 100 mg cortizone per day for ten years. He died Memorial Day when I was 3, 1967. I have struggled with adrenal shock since I was 28.
If you take extra, you run out, then don't have any and can't get more til refill time ( 1 or 3 months depending on insurance), and every Dr I've been able to see is tight on dosing ( I've messaged you about the Dr now working with me on an experiment to take up to 10 more mg a day when I weight train, and he did finally prescribe me the emergency shot), but extra for anything else? I've had 3 Drs since getting diagnosed, and none understand having extra on hand. So how do I even get to self care and taking my own control over dosing. I have that tiny bit of lee way right now, but supposed to be specifically using that for building back some bone and muscle. If anyone knows an amazing Endocrinologist in or near Alabama, please let me know. Blessings ( thank you so much for this and every video)
Jen - ask the doctor what are you supposed to do when you get sick and are supposed to be double (or triple) dosing? - but one thing you can do is build a stockpile of pills by refilling a few days early, every time - most insurance will pay to refill a 30 day prescription after 21 days - so start refilling your script every 22 days - and if you run out of refills before you go back to the doctor, let the pharmacy contact the doctors office for authorization to refill (usually these requests are handled by the medical assistant and if you have a history of getting the medicine, they will just automatically renew it)
Keep fighting friend...you need extra meds and they need to get on board with updosing. Living with Addison's Book is amazing, Addison's Self Help Group from Uk...go in with research to support that you need extra meds to updose...I hope you have an emergency kit!
@chronicallyfit_withjill I've actually been doing that when I can, lol. I learned with insulin a long time ago. I still have a " last meal" fear tho. I have asked when I've been sick and brave enough. I went thru surgery recovery with civic a month before, and getting it again soon after, with a bad pass out episode, and just got a " huh, wonder why that happened" and they gave me a 1 week rx of 5 extra mg per day, but I had to basically beg. They didn't even get the connection ( and this is talking to the endo, the encore assistant ( she was the most help), and my GP. This endorse is the best one I've been able to find. Much better than the 1 before him. He always has a long waiting list for appts ( I finally go back next week, and have a diary of my days, when and how much I took, how I felt, etc.. The extra didn't help day of workouts, but oddly, I went to bed earlier, had better sleep and woke up NOT feeling like I had the flu!! And felt almost like a normal person ( with my normal doses) for almost half the day!! So apparently, I am always waking up, trying to recover from the previous day. He doesn't take into account that the diabetes, hashimotos, gastroperesis, cancer/menopause ( cancer gone, but menopause from it) are probably stressing my body extra because I can never be in homeostasis if I have to take a dry for every organ - and am not allowed hrt. 😥( please email me back when you can. You were gonna let me know on the dose timing, but I know your very busy. I was gonna take the info with me to the dr). Bless you and thankyou! I felt you when you cried in the Drs office saying how tired you are. Besides the f exhaustion, yes, the 24 hour a day planning and doing, then trying to do ANYTHING else, its just too much sometimes. And hubby is wonderful, but he can't understand why surprise company or any change of plans throws me into a spiral ( speaking of that, my anxiety meds aren't doing well anymore. I seem to be zero or 100, and there is no in between. I get really angry or nervous. Does this happen at some point, or is it maybe just menopause changes, I wonder). I'm sorry for talking too much. You bring it out of me, lol. Many blessings
@@chronicallyfit_withjill Oh goodness! I had a long reply and it disappeared. I'm gonna go cry now. I can't write it all again, I'm sorry. I will have a dose diary and how I've felt, and hope to have more by appt next week. You and I have been emailing on dosing and working out. I am on pills ( etc) to keep several organs working, can't take her after cancer and menopause, even tho Addison and other diseases got a lot worse after that. I can never get into homeostasis, and he doesn't get it ( previous Dr made me put the book away. She didn't care to hear any of it. This one is a little better. That's all I can re - write for now. Many blessings. You inspire me to live and fight and I thank you for that.
@@sherriv8615 Yes!! I learned to do that a long time ago with insulin. Bless you and thank you ( I freak out, thinking everything is my last meal and someone is gonna take it away, if that makes sense) blessings!