u/Nanakurokonekochan

Exercise tips and YouTube recs

Hello my fellow adrenal insufficiency friends

I’m in a bad mood because I hurt my neck a while ago and had to spend the entire national holiday here in pain. Had to cancel a lot of plans too. It was the worst stiff neck of my life and for a few days one of my arms was weak, it was pretty scary.

I have autonomic nervous system disorder and long covid too, so HIIT and heavy weights are a no go. (For me)

This was a wake up call for me tho. I used to be fit and into workouts before I got sick. Now I’m a steroid injected sack of potat and have bad posture and joint pain. I went from pilates princess to couch potato. I don’t like it, but I feel lost and don’t know where to begin with.

Do you have any YouTube workout recs for people like us? Thank you. 🙏

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u/Nanakurokonekochan — 3 days ago

After the birth of Prince Mustafa, Mehmed IV granted Gülnuş Sultan the title of “Haseki” and did not grant the same title to any other woman in his harem. Gülnuş Sultan is a unique woman in Ottoman History who accompanied her master to military campaigns and hunting trips in Balkans, and a couple of times her famous Silver Carriage got stuck in mud while on road!

His harem accompanied Sultan Mehmed IV on his military campaigns, hunting trips, and excursions. The first recorded journey of the Haseki Sultan took place in early summer 1665, when she traveled with her princes to Dimetoka (Didymoteicho) which is now within the borders of Greece. (Fun fact: Lutfi Pasha was banished to Didymoteicho after infamously assaulting his wife Sah Sultan, sister of Sultan Suleyman Han, and remained there until his death in 1564)

Haseki Gülnuş Sultan also accompanied her husband on his third inspection of the fortresses of Gallipoli (August 20th, 1665). She had left Edirne a few days before the sultan and stayed at her estate in the village of Dâye Hatun, where the governor of Damascus, Vezir Kaplan Pasha was in charge of her personal safety and security.

Later, Gülnuş Sultan set out for Gallipoli and was also present during the Sultan’s inspection of the fortresses in Anatolia and Rumelia. Similarly, during their stay in Edirne, she often accompanied the Sultan on his hunting parties to Silistra and Hacıoğlupazarı.

During the siege of Candia, when Mehmed IV set out from Edirne on his campaign to Crete, Gülnuş Sultan, who was pregnant with Hatice Sultan at the time, returned to Istanbul along with Turhan Sultan.
(June 1668) Upon receiving news en route that the conquest of Candia was imminent, Mehmed IV turned toward Yenişehir and summoned the Haseki Sultan to that town. After giving birth, the Haseki Sultan set out for Yenişehir, known today as Larissa, which lies within the borders of Greece.

The sultan, who had reunited with his family in Yenişehir, spent time there with Haseki Gülnuş Sultan, Prince Mustafa, and Hatice Sultan. The Haseki accompanied the sultan, who went hunting and explored the surrounding area, along with the prince. When they went on an excursion to the village of Doğan, the Sultan stayed for seven or eight days, while the Haseki was permitted to stay a few days longer.

Gülnuş Sultan also accompanied Sultan Mehmed IV on the Kamaniçe campaign, his first military expedition, which he organized and personally participated in on 1672. Shortly after departing from Edirne, the Haseki Sultan’s silver carriage, like most of the other carriages, became stuck in the mud near the village of Köprü. Grand Vizier Fazıl Ahmed Pasha managed to free the carriage with great difficulty by harnessing the horse he was riding. Upon reaching Babadağı near Isakçı, the imperial tent was erected, and special tents were prepared for the imperial harem. While the sultan was on campaign, it was decided that the imperial harem would remain here. Şeytan Ibrahim Pasha was appointed to serve the Haseki Sultan and Prince Mustafa.

Upon returning from the campaign, the Sultan and his army arrived at Tekür Village, where the imperial harem was staying, near Babadağı. The harem entourage followed the sultan, who was hunting along the return route, and returned to Edirne in December 1673. Since the return coincided with winter, rain and snow made the journey arduous. Once again, the Haseki Sultan’s carriage became stuck in the mud at Nadar Derbendi.

Source:

IV. Mehmed'in Ailesi ve Hanedan Politikası, Merve Cakir

u/Nanakurokonekochan — 10 days ago

I have adrenal insufficiency and I decided to get a blood test to see if I’m in perimenopause because before my diagnosis I missed a year of periods (or more? Can’t remember exactly how long)

After I was put on medication my period came back but it was just spotting, and I had other symptoms such as spotting in between periods, pelvic pain and some tightness during sexual intercourse. My mom was menopausal by age 40, and I’m the same age rn so that was another factor.

My chronic illness symptoms overlap with peri symptoms and in the end my doctor told me my blood test results look fine and I’m not perimenopausal.

I’m not so sure tho and I wonder if I need a second opinion

Sorry forgot to add I’m 40 years old

u/Nanakurokonekochan — 13 days ago

I’ve been on Fludrocortisone (along with HC) for about three weeks and besides the mild swelling I feel that ear swooshing feeling in my ear drums. When I measure my blood pressure, it appears to be normal. This is definitely something I’ll ask my doctor in my next appointment… but anyone experienced this before? Is my Fludrocortisone journey coming to an end? I enjoyed being functional and upright but I’m also worried about my BP.

Pretty sad and disappointed atm 🥲 might also appreciate words of encouragement and support

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u/Nanakurokonekochan — 13 days ago

The sad state of my arm in April (picture above)

Hey, 👋 if anyone is reading this, I just want to give an update. I thought I was managing my illness pretty well mentally, but I randomly broke down into tears yesterday and started to howl uncontrollably, so maybe I’m not *that* strong after all.

In March and April I had a total of four blood tests (I think?) for various reasons. The veins on my left arm, a favorite of the nurse at my regular clinic I visit, exploded after the third withdrawal. Nurses hate drawing blood from my right arm, they say my veins are too hosoi and they have a strong preference for the left arm. It looks pretty bad in the picture, and hurt for a few days.

It’s now officially been a year since my Adrenal Insufficiency diagnosis! Yay. If anyone spent a long time without receiving evidence based medicine to help their health issues, you’ll understand me: *anything* is better than being left out in the dark about the source of your health problems or being medically gaslit about it. I’d rather have medicine and a doctor who listens to me over kampo and a bunch of excuses.

I’ve been on hydrocortisone for a year now. The medicine literally keeps me alive by preventing adrenal crisis, and makes me somewhat functional — functional in the sense that I can move and don’t have to rot in bed all the time, I still feel pretty exhausted and have limitations compared to healthy women my age. But it also aged me a lot because hydrocortisone has some side effects. I’ve also, gained some weight.

I don’t know when I got adrenal insufficiency and we will never know. My first Covid infection was Dec 2022, and it took me nearly a year to start getting better from the post Covid syndrome following the initial Covid infection. After the third Covid infection in November 2024 tho, I was nearly bedbound for a few months until my rheumatologist suggested I may have adrenal insufficiency related to long covid. I’ve been in an out of big hospitals and clinics and no one suggested there might be a link, no one recommended ACTH stimulation test and I spent many days having body tremors, my mouth shaking for hours, along with many other symptoms that makes me wonder if I had AI right after the very first Covid infection and it went undetected. I don’t know if I had AI during those undiagnosed days but it’s so scary to think I might have died due to medical neglect.

For autonomic nervous system issues, recently I’ve been put on Fludrocortisone, a lot of people seem to be on Fludrocortisone and Hydrocortisone combination, and now I’m one of them. It’s too early to comment because it may have side effects like high blood pressure but this medicine is supposed to help me become more functional and help with orthostatic issues, exhaustion and increase my activity levels. I do feel increased BP symptoms tho, my ears are vibrating, so I’m not sure I can stay on Fludrocortisone for too long and I’m pretty sad about this.

According to my latest blood test, my ACTH level is incredibly low. It should at least be 7.2 and mine is under the detectable 1.5 level. It’s pretty grim to think about. (I’m Tertiery, my hypothalamus was damaged due to Covid virus) My doctor had told me some patients may recover after a year of being on hydrocortisone but at this point we expect my health issues to be life long health issues and after this my treatment plan will be about adjusting the correct dose of medication.

I’m grateful about my husband, my friends and family who have been supportive and understanding. This is why I still have hope about life. I want to live, my life will not be ideal, but I still want to be alive and I still think I can make something out of my life.

u/Nanakurokonekochan — 17 days ago