I totally missed the 2 week mark until my BLA until just now. People have been talking and asking more about it at work, which is kind of nice. I feel like the people I work with don't necessarily get the full picture of what I'm dealing with, how long it's been going on, and how difficult it is. I have been thinking about printing out the letter for family and friends of Cushing's patients that Kate wrote for the Cushing's Help website and just telling people they can read it if they want to, but at the same time it's almost easier at work to have people just not ask questions because I am still so emotional about the whole thing.
I have a lot to accomplish in the next two weeks! The pre-surgery nerves are starting. All summer I've been wanting the day to come sooner, and now that it's coming up I want a time out. I had my pre-op telephone screening today. Apparently when you have had 3 hospitalizations already this year they don't make you come in to do the whole 4 hour pre-op routine. The nurse that called was very nice and breezed through all the questions. I'm amazed that these nurses can still sound empathetic when hearing about my 3 hospital stays already this year, I'm sure there are people that they've taken care of that haven't even LEFT the hospital for months, yet they still make a big deal out of the fact that I've been there "so much".
Since I've been really bad at posting the last couple months, maybe I should take the time now to put in words what is going to happen in 2 weeks. I will be having both of my adrenal glands removed, which sit on top of my kidneys. Adrenal glands produce cortisol, aldosterone, epinephrine and norepinephrine. Those hormones are essential to life, so I will need to take lifelong replacements of hydrocortisone to replace cortisol and florinef to replace aldosterone. My central nervous system will kick in and produce epinephrine and norepinephrine when needed. My body will no longer have the ability to produce cortisol, so I will not have Cushing's disease anymore and my symptoms will improve over time. I will begin to lose weight, my blood pressure will go down, my hair will stop falling out, my swelling will go away, I will be able to sleep at night, my muscles and bones will stop deteriorating, my red face will go away, I will stop getting kidney stones, my immune system will improve, and much of my depression and anxiety will improve (this means no more tears every 5 minutes...hopefully). All of these good things will take time and patience, but now I know for sure that they WILL happen. I WILL feel better.
I will start to get my life back two weeks from today.
I have a lot to accomplish in the next two weeks! The pre-surgery nerves are starting. All summer I've been wanting the day to come sooner, and now that it's coming up I want a time out. I had my pre-op telephone screening today. Apparently when you have had 3 hospitalizations already this year they don't make you come in to do the whole 4 hour pre-op routine. The nurse that called was very nice and breezed through all the questions. I'm amazed that these nurses can still sound empathetic when hearing about my 3 hospital stays already this year, I'm sure there are people that they've taken care of that haven't even LEFT the hospital for months, yet they still make a big deal out of the fact that I've been there "so much".
Since I've been really bad at posting the last couple months, maybe I should take the time now to put in words what is going to happen in 2 weeks. I will be having both of my adrenal glands removed, which sit on top of my kidneys. Adrenal glands produce cortisol, aldosterone, epinephrine and norepinephrine. Those hormones are essential to life, so I will need to take lifelong replacements of hydrocortisone to replace cortisol and florinef to replace aldosterone. My central nervous system will kick in and produce epinephrine and norepinephrine when needed. My body will no longer have the ability to produce cortisol, so I will not have Cushing's disease anymore and my symptoms will improve over time. I will begin to lose weight, my blood pressure will go down, my hair will stop falling out, my swelling will go away, I will be able to sleep at night, my muscles and bones will stop deteriorating, my red face will go away, I will stop getting kidney stones, my immune system will improve, and much of my depression and anxiety will improve (this means no more tears every 5 minutes...hopefully). All of these good things will take time and patience, but now I know for sure that they WILL happen. I WILL feel better.
I will start to get my life back two weeks from today.
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