Day 5 of crisis

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So I definitely don't look better or feel better. I felt better at first as they gave me high doses of IV steriods an fluids then I started swelling yesterday and now it hurts to hold my phone up move. Emotionally I am all over the place from the pain, the way I look, the loneliness, and of course the steriods. I was in tears several times yesterday mostly from the pain. 

I was in much worse shape than I thought I was. The doctors said I will be here until begining of next week at least. The crisis happened because my body wasn't absorbing my oral steriods. Thankfully there are many types of steriods so we can try another one. Right now we have to get my body's levels out of the danger zone.

When your body doesn't have enough cortisol you can die. When your body is too low it can't handle physical stress, or sickness. Your cortisol helps to regulate all sorts of important bodily functions including blood pressure, your gi tract, blood sugar,reproduction and more. My level was .5 on Sunday and for the last month while on meds has been 1.5 to .9.
Currently in the hospital my days are filled with steroids every 12 hours, stomach injections every 8 hours, vitals every 6, blood sugar checks every four, continuous feeds, fluids, and cardiac monitoring. There is an alarm on the bed so I can not try to get up alone because I am a fall risk.



That’s my med IV, I have another one for fluids, also my lovely fall risk, allergy ( to many to rite on the band) and regular band. They ran out of adult dressings so i got one with cute teddy bears from pens which makes me smile I always fine one thing to make me smile.

The plan as I understand it is to get my cortisol levels up and stable and get me to an oral steroid that my body will absorbe. Then they will place a PICC and remove my NJ and surgically play my tube with an J extension.  I think the NJ is already messing with my voice so i am happy to have it gone. It was supposed to be replaces the following week anyway so I am happy they can do it while I am here and hopefully the damage is temporary. 

That’s all I have for now, thank you for all the love! 





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