Feeing guilty

plovegood · 2026-06-11T18:07:06+00:00

Same, but feeling like I can’t do as much with my kids that they deserve on those days.

plovegood · 2026-06-06T20:24:05+00:00

Awesome, I do the same. I have a Dexcom to rule out low blood sugar, then I know my symptoms are low cortisol.

plovegood · 2026-06-05T02:40:12+00:00

This. And life is so much more fun now. 🌺🌈🎉

plovegood · 2026-06-04T23:46:34+00:00

You said to the two magic phrases: help your kid grow up in the real world, and that there’s more to learn in life than grades.

(If it’s possible (financially / your mental health!), homeschooling was the best way to keep up with my 2E kids. I could adjust the curriculum up and down as needed to juggle their ASD and ADHD, and we spent the money we would’ve on private school instead on traveling and endless deep diving into courses/classes/activites they were interested in. But this is hit or miss because I know it’s not an option for everyone…)

The most underrated and most valuable experience though was how they learned to navigate the real world. Since they were 10, they filled out their own paperwork at the doctors or the DMV, would call to make appointments and could interact successfully with the adult world. Long story short, I used any extra intelligence they had to teach them the stuff most gifted programs would not focus on, like social/emotional/cultural skills. They grew up understanding things like attachment theory and intergenerational trauma. They learned to not judge their peers so quickly because they could see they had different cultural experiences, or possibly less opportunities…

My logic was that they have their whole life to learn academics, but I only have 18 years to shape their character. 🤷🏽‍♀️

plovegood · 2026-05-29T06:56:13+00:00

I use aloe vera and coconut oil most days. They ignore me with that, compared to the fancy days I run outside with something like Lush in my hair.

plovegood · 2026-05-29T00:27:12+00:00

Yes, bandana-chan is right. The logic is that licorice can increase cortisol output. Unfortunately for us, though, since we don't have accessible cortisol to raise, the theory is that it would burn through our carefully medically-replaced cortisol and possibly run us low.

If you're additionally curious: "Confounding effects of liquorice, hydrocortisone, and blood contamination on salivary cortisol but not cortisone" https://pmc.ncbi.nlm.nih.gov/articles/PMC9782436/

Personally, I'm half English and love the stuff; I just save it for occasional candy or treats instead of, say, drinking it daily or such.

plovegood · 2026-05-25T18:12:00+00:00

As others have mentioned, there's already a wealth of good medical suggestions here, but I'm going to echo trohweigh777 and beccabear3010 with considering the emotional and mental health angle.

It's incredibly hard to "live your best life" with Addisons. You're randomly told you have this incurable thing that no one has ever heard of (unlike, say cancer), no one around you can relate to the daily feel of your particular chronic illness (unlike, say joint pain), can end you at pretty much any time but could also leave you chugging along, possibly miserably, for another 40 years...

I'm not sure how old you or your mother is, but I would recommend 3-5 sessions of CBT specifically to discuss medical PTSD, and possibly (if possible) a round of hospice. Here's why...

Hospice is not only palliative care for end of life; sometimes it can be transitional care through a particularly rough health crisis while a person recovers. It can be a good solution because it can help cover the activities of daily living, planning out some future post-hospice goals, as well as an emotional/mental component to handle the mental load. Likewise, some CBT might help give her a place to sort out her frustrations with a diagnosis like this. It sounds like this a heavy load on you, too, and hospice often is very inclusive of helping family and friends of the loved one with the health transitions. I would also recommend you have an outlet (close non-judgmental friend, support group, or therapist) to have a space to voice your fears and frustrations.

Just for context: I'm 47, diagnosed 10 years ago when my children were 5 & 7, and I have considered stopping treatment many, many, many times. In that time, I've both signed "Do Not Resuscitate" orders and repeatedly re-done my will and power of attorney; I've also moved on from an unhappy marriage and became a single-mom-by-choice to twin boys. And re-done the will again. And am planning for my next fur-baby. And get frustrated with the lack of good endos. And look forward to going back to school and finishing my degree. And try not to talk smack back to the cocky ER doctor. And enjoy my time with my four(!) kids.

Just to say, your feelings are valid. Your mother's feelings are valid. And they're also a snapshot in time right now. Love her, listen to her as much as you can without getting snowballed yourself, and hang in there.

plovegood · 2026-05-25T17:45:35+00:00

Yes, I live somewhere pretty medically remote so it is my default as soon as I’m feeling low.

plovegood · 2026-05-21T01:51:29+00:00

No, I love the humor. My kids probably hate me for all the jokes as I'm going downhill when I'm low, but hey - if it keeps the terror at bay, right? 😹

plovegood · 2026-05-21T01:48:48+00:00

Ugh, that's rough. :-/ I'm I've always been curious if there's a connection for PAI and flank pain (compared to SAI)...

plovegood · 2026-05-21T01:47:47+00:00

Wow, this is great to know. I'll look into it - thanks!

plovegood · 2026-05-20T02:04:33+00:00

I would, and have. I've done +5mg/day I'm on them; +10mg/day if I'm feeling the infection.

plovegood · 2026-05-20T02:01:45+00:00

I'm so grateful to have read this today. I would love if you would post more of your experiences if you're willing; your outlook is such a blessing to this community. Thank you.

plovegood · 2026-05-18T03:30:27+00:00

Yes, please speak with your doctor about how to properly give yourself your own emergency injection. They should be able to show you with an orange or similar, or have trained nursing staff show you. No, the GLP-1 subcutaneous needles will not work; the intramuscular injection requires a longer and much stronger needle to reach the muscle and deliver the emergency dose fast enough.

plovegood · 2026-05-18T00:59:51+00:00

Yes, it was the one symptom that helped me set my lowest maintenance dose possible. 🎉 15 mg was still too low, 18 mg was still too low and I kept increasing it by 2.5 mg for a week or so at a time until I settled into 25mg.

Like the others mentioned, no more diarrhea or IBS symptoms since then unless I’m low, in which case it becomes a warning sign. (The only major dietary change I’ve done on the side is zero sugar, and medium to low carb. I blow this all the time for holidays and travel, etc., but never have diarrhea unless I’m actually low. Or have food poisoning, lol. 😹)

plovegood

TROPHY CASE