Did this come with an owner's manual...
I am now down to 30mg 20mg and 15mg cortef. Cortef is what I use to replace the hormones my now missing adrenal glands used to produce to much of. The normal dose varies for each person, but I need to get down to around 25-35mg a day total. Maybe a bit more or a bit less. We won't know till I get down to that level. My body will let me know the dose it needs.
We went to see the endo to get our lesson and manual on Adrenal Insufficiency Thursday. Learned why eating high potassium diet was bad and stuff like that. The doctor took an hour to explain how all the medicine worked in the body. We had read we needed to eat high potassium and probably take salt pills/eat lots of salt. It was not the smartest advice we had read. The doctor said eat a normal diet with maybe a bit more salt. Adding salt in warmer weather is needed, but we arent exactly having a heat wave around these parts yet. Still winter here.
We were worried about electrolytes but not so much after our training with her. She told us the warning signs to look out for and when we should call her. I have a standing order for blood tests for everything, but they won't be needed for the most part. Reading some support message boards you think all that stuff is going to be bad, but it really isn't the case. Seems like most people do fine with it. You really have to be careful with taking advice on support sites at times. It really helps to work with your doctors. I think it is wonderful to be knowledgable, but I think you can get astray from facts sometimes. Like the doctor told us, most people who are doing well after a bla or with Addison's aren't writing on message boards or blogs. They are out living. I plan to be out with them, and write about the experience. Maybe it will help someone else.
It was the first time we have sat down with a doctor to really get to learn how everything is working/going to work. You really get stuck in crisis mode at some point with Cushing's when it goes on so long or gets to a certain point. You start living that way with everything it seems. We kind of just expected to be in crisis mode after the BLA. It isn't working out that way.
Thursday was probably the first day in years that I really felt like there is life after Cushing's. I am able to get out and mingle with people I haven't seen in years at church. Being among people is doing wonders for me. I hid so long because of the Cushing's. It was one of the first things I noticed after surgery. I didn't care anymore, groups of people didn't bother me.
I still have a long road to haul, but it is getting better. I feel like crap, but it is very much different than before the BLA. It is more manageable. I can l do things to make it better. With the Cushing's there were times nothing helped. I had gotten so much worse from November 2008. I have little doubts that the BLA happened in time to prevent some more series bodily damage or worse.
So now, it's just weaning and fighting the pain and such. I am still on a pretty high dose so the fun times are still to come. I think we have the right doctors in place. We are aware of what emergencies might happen. More importantly, we are aware on how to head them off, and if needed, how to treat them to make sure we can buy time till I get to a hospital. That may not ever happen in my lifetime, chances are good it won't if we stay ahead on the medicine. We are ready if it does.
We went to see the endo to get our lesson and manual on Adrenal Insufficiency Thursday. Learned why eating high potassium diet was bad and stuff like that. The doctor took an hour to explain how all the medicine worked in the body. We had read we needed to eat high potassium and probably take salt pills/eat lots of salt. It was not the smartest advice we had read. The doctor said eat a normal diet with maybe a bit more salt. Adding salt in warmer weather is needed, but we arent exactly having a heat wave around these parts yet. Still winter here.
We were worried about electrolytes but not so much after our training with her. She told us the warning signs to look out for and when we should call her. I have a standing order for blood tests for everything, but they won't be needed for the most part. Reading some support message boards you think all that stuff is going to be bad, but it really isn't the case. Seems like most people do fine with it. You really have to be careful with taking advice on support sites at times. It really helps to work with your doctors. I think it is wonderful to be knowledgable, but I think you can get astray from facts sometimes. Like the doctor told us, most people who are doing well after a bla or with Addison's aren't writing on message boards or blogs. They are out living. I plan to be out with them, and write about the experience. Maybe it will help someone else.
It was the first time we have sat down with a doctor to really get to learn how everything is working/going to work. You really get stuck in crisis mode at some point with Cushing's when it goes on so long or gets to a certain point. You start living that way with everything it seems. We kind of just expected to be in crisis mode after the BLA. It isn't working out that way.
Thursday was probably the first day in years that I really felt like there is life after Cushing's. I am able to get out and mingle with people I haven't seen in years at church. Being among people is doing wonders for me. I hid so long because of the Cushing's. It was one of the first things I noticed after surgery. I didn't care anymore, groups of people didn't bother me.
I still have a long road to haul, but it is getting better. I feel like crap, but it is very much different than before the BLA. It is more manageable. I can l do things to make it better. With the Cushing's there were times nothing helped. I had gotten so much worse from November 2008. I have little doubts that the BLA happened in time to prevent some more series bodily damage or worse.
So now, it's just weaning and fighting the pain and such. I am still on a pretty high dose so the fun times are still to come. I think we have the right doctors in place. We are aware of what emergencies might happen. More importantly, we are aware on how to head them off, and if needed, how to treat them to make sure we can buy time till I get to a hospital. That may not ever happen in my lifetime, chances are good it won't if we stay ahead on the medicine. We are ready if it does.
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