So I’ve been in the hospital for 4 days having an adrenal crisis after a recent diagnosis of Addison’s disease. It’s been hell to say the least being stuck in a tiny room while my son is home sick and my daughter experiences her most stressful week before her big show and my husband tries to juggle it all. So as per usual I take to writing to get my feeling out. I call the below “Hospital”
HOSPITAL
Laid out in a bed for hours on end
Tossing and turning miserably
Holes in my skin where my life lines begin
Something has taken over me
My body has changed in mysterious ways
When will it come back to find me
These curves are not mine Wrapped in hospital vine
I do not recognize the woman beside me
Days have gone by I’m complacent inside
The world keeps on turning around me
Here I lie while my fingers you pry
Pushing your drugs in the roots of my thighs
Buttons I push for your substance to nourish
For the poison you say will cure me
Sicker I get, laid out in my sweat
Please take me outside so I can get back to my shit
I do not belong in the walls you have confined me
Just one breathe of fresh air, will get me there
But you suck me back into sterile atmosphere
Say without what you offer I’d be dead in the gutter
But this is where you intend to hypnotize me
Battered and bruised, swollen and bemused
I do not recognize me
The deed has been done, you have had your fun
Another patient for your scores and your puns
Come back soon. when you’re sick… and find me.
– Maegan Sheiman ; The Diary of a Sick Girl
TheDiaryofaSickGirl 
Wow, just wow! I just came across your story via Love What Matters on Facebook and we have so, so much in common!
I have EDS, I have lots of kidney stones (though thankfully they are mostly hanging out in my kidney and I’ve only had one pass painfully where I had to see emergency care) but the doctors don’t even bother counting how many are on the scans, just too many! I’ve had issues with low potassium in the past and taken the horse pills and gotten the awful infusions, I have so many veins that are no longer usable from damage due to potassium infusions. I have adrenal insufficiency, my labs present as primary but because I don’t have the autoimmune markers associate d with Addisons they aren’t calling it addisons… did you have the autoimmune markers or are they saying addisons based on your labs? Ironically the vast majority of people who have adrenal insufficiency and especially Addisons have problems with HIGH potassium. I definitely did not and nor did you! In fact high potassium is so expected when one is in a crisis they never even tested my cortisol levels! For 2 years I suffered passing out constantly, hospitalized whenever sick with intractable vomiting and low potassium, lost over 100 pounds without trying in 1 year. I was have tons of scans looking for cancer yet no one thought to check a cortisol level. It wasn’t until I had a minor outpatient procedure and then suddenly I couldn’t even be upright without my vision blacking out. My cardiologist put me on fludrocortisone (a mineralcorticoid that increase BP, sodium and decreases potassium) many people with Addisons take this as low sodium and high potassium is such a problem for them. All it did for me was send my potassium plummeting and I still could be upright without blacking out. I was admitted for potassium but I begged the doctor if he had any ideas about the crazy symptoms and he asked if I had my cortisol checked… I hadn’t he said he’d check it but said I would need to get it checked again outside of the hospital because my body was currently under stress so it’s going to be elevated and I needed to be tested while not under stress… well turns out that wasn’t necessary my cortisol came back at almost nothing and he came running into my room in shock saying he had to call an endocrinologist because he didn’t know what to do next and the small hospital I was at didn’t even have one! I don’t know what would have happened if he hadn’t ordered that cortisol… I may not be here today.
I’ve heard of others with EDS and adrenal insufficiency but typically they have secondary due to steroid joint injections and not primary where randomly the adrenals stopped working! I’ve never before heard of another story that mirrored mine so much!! (Also have Asthma, also do best on high sodium, high protein diet which is awful for my kidney stones).
Crazy!! I will say that my potassium levels improved after finding my ideal dosing for my steroids… but if I’m stress dosing it can get wonky again. The dosing of my daily steroids is a very fiddly thing that took years to fine tune to something wasn’t completely awful… still sticks and affects me daily but until there are better treatment options I doubt any better is even possible!
I will say as my adrenal insufficiency has gotten more under control and I understand it better we were able to reduce my daily steroid dose (I started on 30mg as well and am now around 15mg… but that took years) its the perfect dose for me where I don’t feel utterly miserable, side effects are lessened and I don’t have an increase in crises. I had a lot of crises in the first 3-4 years after diagnosis, now they are not too common! As you learn your body’s signs you will get better at detecting subtle changes and knowing when you need to react and increase your dose and when you can wait… although its not easy. Looking back to the first 5 years after diagnosis it’s much more evident how much better things have gotten for that at least… but it’s still hard and another daily thing to think about.
It’s always extremely fun too when I’m having more issues with something like fatigue or low bp and then my Endo says it’s not your adrenal insufficiency it’s your EDS, see your EDS dr and then I got and see them and they say it’s not EDS, it’s your adrenal insufficiency, so see your endo. Sigh…
Either way just wanted to share because it was so exciting to see someone with so many things in common and I thought you might like learning that as well. ❤️
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