What was going on

This is part of an email I sent my family on Sunday, it does a little explaining of Addisons Disease and how it works with my crazy mixed up body. Hopefully give you a little clearer pictures of what was going on the past week or so. 

What's been happening.

I have Addison's Disease (adrenal insufficiency).

I have Stills Disease/Rheumatoid Arthritis.

I am allergic to nonsteroidal antiinflamatories (NSAIDS)

This combination is very strange and rare.

Whenever the RA acts up I have to go on steroids not NSAIDs. When you are on steroids you can not just stop taking them you have to taper off them, especially higher doses.

Your adrenal glands make a type of "steroid" that control a WHOLE LOT of things. When you have Addison's your adrenal glands "shut down" and don't make what they should so you have to take a type of steroid so your body can function. 

My Addison's can act up anytime my body experiences stressors, get sick, RA flare or just out of the blue. When AI acts up my body kinda shuts down... I get very nauseous, diarrhea, lighted headedness, stomach pains, body aches, body temperature go nuts..these are all signs of danger that I could be going into a adrenal crisis (bad news bears). In order to help and avoid a crisis, I need to get larger amounts of the "steroid" your adrenal glands make, this is given via IV and I also need to be pumped with fluids - which means hospital. After being pumped on the larger amounts you have to taper off them. The taper needs to go slowly so the Addison's doesn't act up, which is tricky. It's important to taper off the steroids so your body can adjust and compensate back to normal.

With the AI things can also escalate rather quickly and at times strangely.  Unfortunately,  neither RA or AI  is predictable - which as you know is frustrating and at times complicated & scary. It also means ER & hospital visits so I can get the higher doses, bigger medications my body needs and all my issues can be addressed & monitored. When I have a RA flare - AI needs to be addressed. If I get sick, a cold etc - AI needs to be addressed. If I experience weird amounts of stress - AI needs to be addressed. Since, a lot of AI symptoms can mimick and appear like the flu, a virus, food poisoning... I have to be in good communication with doctors (which I am) and have a action plan set in place (which I do) so we can figure out what we are dealing with. 

So, as you can see, there is not formulaic treatment for me. There is no formula. Ever.  And if you ever feel confused and frustrated in understanding what's going on with me, know that you're not alone. As I constantly put my life on hold and I'm consistently reminded how little control I have over my health, I am often frustrated. It's a merry-go-round that I feel like I can't get off.  

This week i was at the beginning of a adrenal crisis. Was pumped with fluids and given IV meds. The doctors and I have done lots of communicating and talking about things and making different plans for treatment. The taper this week has gone slow and has been tricky bc I kept having set backs with AI. Currently, (Sunday evening) I am NOT in fluids anymore and heart is stable. Everyday we have been tapering down on the steroids by 25mg.