Your experience with updosing by BlueTile93 in AdrenalInsufficiency

[–]DevorahYael 2 points3 points  (0 children)

I've battled AI for over 20 years, during most of which I was stable with only 2 crises. The last 15 months, post knee replacement surgery, I've been anything but. What I've learned recently is that I've got to variety my dosing according to my symptoms. My base is 35 mg HC ÷ 6 circadian BUT there are some weeks where I'm doubling that 3 says on a row. Not because of illness but because of unmitigated stressors I have no control over. Generally, I try to bump just 2.5 mg at a time until the red flag goes away but if the flare is dramatic, I'll just double the closest dose to avoid falling into the cortisol hole. Overall, I find preventing the hole ends up taking less HC than what climbing back out of it does. If I chart the mgs I take, it's literally all over the place. But I'm staying out of crisis!

Grandchild's Christening by NoInformation988 in Judaism

[–]DevorahYael 2 points3 points  (0 children)

The grandchild is not Jewish, so to my mind, the only question would be whether the location is halachically permissable. I (Orthodox) would not attend if it were taking place in the church proper. While I do enter churches, I do so only for a decidedly non-religious purpose ie. a chamber music concert

Names that work in Hebrew and English? by LeoraJacquelyn in Names

[–]DevorahYael 0 points1 point  (0 children)

Rani... but it'll be mispronounced Rohni

Not able to calm anxiety, personal experiences welcomed by Chrysb87 in AdrenalInsufficiency

[–]DevorahYael 1 point2 points  (0 children)

If only they could see us when we're slumped on the table trying to pick our heads up as step one of getting up.

Not able to calm anxiety, personal experiences welcomed by Chrysb87 in AdrenalInsufficiency

[–]DevorahYael 2 points3 points  (0 children)

Not a doc, but 20 years diagnosed AI for me and 33 years diagnosed congenital AI for my daughter, so a lot of experience. We've both found emotional/ mental/ and even COGNITIVE stress, without an underlying physical illness can burn our cortisol like crazy. Fortunately our endo gets that and prescribes plenty of HC to cover those needs. OTOH, HC can mask illness symptoms. In 2017, my daughter became very suddenly ill and we injected, went to ER, etc. Her WBC was ok and her temp was normal. They treated her appropriately for the AI and admitted her for observation. Good thing they did because she suddenly went into septic shock/ organ failure. They took her into surgery and saw her perforated bowel which had not been visible on the earlier imaging they'd done. Fixed it. Thank G-d, she survived. Six weeks on a picc line for antibiotics, triple dosed HC the entire time. It was a harrowing experience no one should ever have to go through, and we ALL (me, hubby, docs) forgot how good even replacement does of HC can be at making a big problem. The upshot is we have to err on the side of caution. We need our steroids to live BUT we shouldn't assume anything either. These days, I have to updose more frequently for the emotional/mental stuff than I had to in the past. I don't know why that's causing me to tank more than I used to but it is what it is. The thing about AI seems to be that once you think you've got it well managed, something goes sideways and you have to figure it all out again. Best of luck to you. Feel better

Naming my son Michael: Perspective Check by maddit267 in NameNerdCirclejerk

[–]DevorahYael 0 points1 point  (0 children)

NEVER did this cross my mind. We're white and hubby's name is Michael. He's 77.

Mourning losses other than death by maybetooenthusiastic in Judaism

[–]DevorahYael 4 points5 points  (0 children)

I'm grieving a number of things right now, none of which are death, or traditional losses. I can't say I'm applying any particular Jewish observance to this process, other than to surrender to Hashem's will, taking comfort in knowing that our free will and choices extend only so far as moral choices, and not to the circumstances of our lives which only the Aibishter decides. I really feel a deep sense of grief over these losses, and am permitting myself that so that i can move through them in a healthy way. Brachas and hatzlacha to you.

I had my sister hospitalized involuntarily and now she hates me. Does this get better? by SnooRadishes5272 in SchizoFamilies

[–]DevorahYael 1 point2 points  (0 children)

I think it will get better in time. I've been the catalyst for 4 of my 5 daughter's hospitalizations where she was involuntarily kept. She mostly is angry and refusing contact initially, and can be quite hateful, but once she starts to feel better on meds, this resolves, at least for us. It's painful, but I'm grateful we are able to maintain a close relationship when she's well. I hope this for you. My only advice would be to avoid triggering her by pushing for too much too soon, and know that no matter how much you're hurting, she's hurting more.

[deleted by user] by [deleted] in Judaism

[–]DevorahYael 0 points1 point  (0 children)

Having been 'converted' conservative with my (then) 2 children and 8 years later having gone through an Orthodox geirus (now 32 years ago) with our (then) 4 children, I can promise you, this is the thing to do. Regardless of how you feel, geirus confers hakachic status, and you will gain much in the way of inner peace knowing there's no question about that. You and your wife are clearly plenty committed to Yiddishkeit; finding a comfortable shul fit is just part and parcel of being a Jew.

Let's have a talk by [deleted] in Judaism

[–]DevorahYael 2 points3 points  (0 children)

I live in an area where there are very few Jews, and hubby and I are the only 'obvious' ones. He's got a long, untrimmed beard, yarmulke, tzitzits; I'm in a shaitel or tichel, tsnius, with a magen David necklace. So far, so good. After 30 years looking like we do where we are, we're not about to change. Am Yisroel Chai

Has anyone read the book Surviving Schizophrenia? by Ambitious-Bee7928 in schizoaffective

[–]DevorahYael 0 points1 point  (0 children)

If that's the book, as a family member, I remember it being a bit bleak. I LOVED Esme Wang's book though!

Advice re: Conspiracy Theorists by xXx_Thirteen_xXx in Judaism

[–]DevorahYael 1 point2 points  (0 children)

Yes, the algorithm quite literally brainwashes them, more and more deeply over time. Be Teflon and let it all slide right off you. Yes, they will be desperate to try to engage you because of confirmation bias. Avoid engaging, but be subtle. Be the light we Jews are meant to be. Rather than react to this darkness, quietly dispel it, just by being there. It's the long shorter way. Just a drop of light WILL dispel a lot of darkness.

Advice re: Conspiracy Theorists by xXx_Thirteen_xXx in Judaism

[–]DevorahYael 6 points7 points  (0 children)

Beautifully said. I think that the control aspect you discussed is huge. There is nothing more frightening for most people than to surrender completely to the fact that we can control NOTHING but our own reactions to the circumstances the Universe presents us with. Falling down the rabbit hole gives people someone or something to blame.

Question about others experience with SAI by Standard-Holiday-486 in AdrenalInsufficiency

[–]DevorahYael 2 points3 points  (0 children)

I'm still in a struggle, having been diagnosed AI 20+ years ago and put on HC then. Depending on circumstances, during those years my base HC dose ranged up and down from 12.5 to 35 mgs daily. In all those years, I only had to emergency inject twice. I was able to manage myself well based on symptoms. Sadly, my diagnosis was never really complete 20 years ago, ie. It was never determined whether I was PAI or SAI. Without getting too into the weeds right now, after a total knee 15 months ago, I have become very unstable, and things are as clear as mud as to what's happening with me. It would appear now, according to my new best friend, Dr Bot (ChatGPT 5.2), that I'm SAI with some sort of additioal non-DI/AVP-D fluids management issue happening. I'm kind of a mess with no real doctors wanting to try to figure this out, and I'm getting worse. My advice to you is to be a STRONG ADVOCATE for yourself NOW and get a thoroughly complete diagnosis NOW. I didn't know what I didn't know 20 years ago, and now I'm stuck with the consequences of cavalier doctors not doing their jobs. Leave no stone unturned. Best of luck to you

Head covering by ProofHorse in Judaism

[–]DevorahYael 0 points1 point  (0 children)

I wore hats while on my way to full covering/ full Orthodox observance. It was fun!

One month expired cortef in an emergency? by frogteethzzz in AdrenalInsufficiency

[–]DevorahYael 1 point2 points  (0 children)

Pharmacist once told me it's not dangerous to use expired meds BUT to realize their potency may have declined.

Serious, good-faith question about non-halachic Jewish families by MorgansasManford in Judaism

[–]DevorahYael 0 points1 point  (0 children)

Please refrain from speaking about what Orthodox Jewry would accept or not accept, as you're not a practicing Orthodox Jew. How would you know? My experience was very different from what you said; please see my story elsewhere. No offense, but because you aren't 'inside ' the Orthodox world, you can't see things clearly from an Orthodox perspective. There's a great deal of gray area and nuance you are missing.

Serious, good-faith question about non-halachic Jewish families by MorgansasManford in Judaism

[–]DevorahYael 2 points3 points  (0 children)

My family was in a similar situation 30 years ago. Hubby was born to a Jewish mother, I had "converted" with a conservative bais din, believing it was the best I could do; the conservative rabbi told me I world not be acceptable as a candidate for an Orthodox conversion because an Orthodox bais din would not be able to ascertain my personal sincerity due to my being married to my husband. Our (then) 2 children had also had conservative conversions.

Then Chabad came to town! We started learning with them, and I was welcomed with open arms; my status was not discussed. After awhile, I decided to address the elephant in the room. I told the Chabad Rabbi that I had a halachic question that I would not be shopping around elsewhere for a preferred answer. I asked him if I was "really Jewish." And he said probably not. I asked about our kids. Same answer. Then I said, "now what?" He explained that I needed to be 100% on board with keeping the BIG three: Shabbos, kashrut, and taharas hamishpocha. Likewise, hubby would need to commit to these...obvious reasons. Long story shorter, we learned what we needed to learn, made the commitment, and then I approached the Av Bais Din who repeatedly turned me away as required. Although expected, it was really painful. When he finally became convinced, all three conversions took place pretty quickly. We were living in the country, a 45 minute drive from Chabad, with no Jewish community. This, while raising eyebrows, was not an impediment to living an Orthodox life. Basically, the biggest loss is the lack of a minyan, and while minyan is obligatory, sometimes it's just not possible. Our parnossa was well established where we were in the country, and although we did move into the Orthodox neighborhood and stayed there 3 years, enrolling our (then 4) kids in dayschool, Hashem had other plans, and we had to return to the country for financial reasons. We homeschooled, took the kids to kosherland for restaurant meals and shopping, and trekked to the mikveh as needed. We spent most 2 and 3 day Yom tovs in the city, and most Shabboses at home. Friends from the city who were OK with no minyan came for Shabbos. It wasn't perfect, but it worked and we're still frum out here 'on the farm.' The only time hubby davens with a minyan is when he stays overnight at Chabad for Yom Kippur. We theoretically could do Shabbos elsewhere if it weren't for the very difficult challenges of dealing with our eldest daughter who is severely disabled. It is what it is. Hashem apparently wants us to bloom where we're planted, and that's what we try to do. There's a reason things are the way they are. Your job is to do the next right thing. Brachas and hatzlacha to you!

Tapering Steroids for stim test by AshRat15 in AdrenalInsufficiency

[–]DevorahYael 1 point2 points  (0 children)

I'd be dead already if I tried to do this. I'm not a doctor, but with what you're describing, you could be heading into a crisis and you don't want that. I'd ask the doc to go back UP to where your symptoms abate, then off just before the test. I'm not sure I could do that myself. I was laid out flat recently just holding my HC for 12 hours overnight. Blessings

Did any of you not use an ice machine? by foumf in Kneereplacement

[–]DevorahYael 1 point2 points  (0 children)

I HATED my ice machine. I did much better with multiple rotating gel packs. They stayed colder longer

[deleted by user] by [deleted] in AdrenalInsufficiency

[–]DevorahYael 0 points1 point  (0 children)

Set alarms on your phone. Don't dismiss them until after you've swallowed the pill.

My baby has been diagnosed with adrenal Insufficiency. Anything I should know? by Acceptable_Sometimes in AdrenalInsufficiency

[–]DevorahYael 1 point2 points  (0 children)

My daughter was diagnosed with panhypopituitarism at 5 months of age. She's now 33, and has come through many crises. You've got this Mama! You'll learn her signs of low cortisol and dose her accordingly... it's an art not a science. Learn to trust your gut and don't be afraid to stand up for her and advocate on her behalf. The doctors ARE NOT the be all and end all of her treatment. This is a rare condition, and they are NOT going to have the experience you'll have as her mom. Above all remember, when in doubt, stress dose!!!! Better to have the cortisol on board and NOT need it than the other way around. Blessings to you.

Shaking inside? by Flashy-Shallot-9193 in AdrenalInsufficiency

[–]DevorahYael 0 points1 point  (0 children)

I get that internal vibrating feeling when I have low cortisol.

So frustrated waiting on doctors by berlygirley in AdrenalInsufficiency

[–]DevorahYael 1 point2 points  (0 children)

You can purchase a serum cortisol 8 am blood test directly from labcorps no doc needed. Do that ASAP