BLA Recovery (Addisons)

5 weeks ago I had some organs ripped out of my body.  Doesn't that sound crazy? Ok, so 5 weeks ago I had a Bilateral Adrenalectomy where a surgeon (not some back alley surgeon) took out my adrenals. I went from having Cushings Disease to having Addisons. It was the best thing I ever did.

I am amazed at how tired I am. Seriously exhausted. I don't have my chipper jump around talkative self yet. Its coming but its not here yet. I feel like I always want to sleep and I always want to lay down. I did have an open surgery on one side of my body so I am recovering from that however.


I have gone from never sleeping with Cushings to sleeping 19 hours a day for the first two weeks. Five weeks later I think I sleep 12-14 hours and that is me trying to keep myself awake. I know it will subside in the next coming weeks but I am curious how long this will take.


I feel like I am pretty adverse to Cushings and all the things you learn about it through your sickness. Now its like I have a whole new ball game of having to relearn and teach myself about Addisons. I know the important things. Take my medicine at 8 and 2 everyday and NEVER skip a dose. My body does not create cortisol at all. So basically from what I have read if I don't take cortisol for two days or even one I will be in a coma. Lets hope the Zombie Apocalypse never happens because I will be dead from stress or not having medicine for the rest of my life ha! I think I have been watching Walking Dead too much lately.


Symptoms of Addisons:
Chronic Fatigue (check)
Loss of Appetite (check but its coming back finally)
Low Blood Pressure
Dizziness (check)
Darkening of Skin
Nausea (check)
Vomiting
Diarrhea
Inability to cope with Stress
Moodiness (check....my hormones are still straightening out)
Intolerance to heat or cold ( CHECK!)
Craving Salty Foods


Some of these I will have for the rest of my life. Some may dissipate and go away in time. I am learning and trying to figure out my way through this. I am hoping as time goes by I will be less tired and have more energy. I got this! With the support of my family I have this even more! Addisons you and I will be friends but its going to be a good friendship....not one where you drag me down to having crisis. Lets just be friendly!

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Cushings is gone forever

I have been missing for a month. Yep a whole month. Bet you thought I would never blog again but then whammo here I am writing once more. I am going to imagine applause in my head. Why not right?

Lets get started. As most of you know I have been suffering with Cushings for many years. I had my first pituitary surgery and went into remission for 8 months. Then the tumor was back in full force. I had my second pituitary surgery and I got better for 2 months but then my numbers for cortisol weren't good so I knew I wasn't in remission. I cannot even tell you how much of a blow that was to me. Back to the doctors again and decided on the very drastic surgery of taking my adrenals out so I will no longer have Cushings ever again. Its not a surgery you can start off with at all (in case you were wondering) as it makes it so you will had Addisons (produce no cortisol at all which you need to live).


So Feb 25,1016 I became Cushings free! They took out my adrenals and I am now steroid dependent for the rest of my life. Its been almost a month and I am still recovering as one side they did laparoscopic but the other side had trouble and had to open me up. I have to lay down  A LOT and sleep A LOT now too.

They believe according to my organs (that are twice the size of normal ppl because of excess cortisol) that I have been dealing with this for 10 years. I have only known myself though for about 3-4 years. There is a lot of why I decided to do such a drastic surgery but I can put it into two simple pictures. Here is Cushings Symptoms and here is Addisons. Which would you choose. Plus Cushings I CANT control. Addisons its all in my control.

So its been a month. Things are getting so much better. Today I weighed myself and I have lost 40 out of the 120 pounds I gained on Cushings. One month!! I feel so much happier. My blood pressure that was high and erratic is now normal and perfect. I sleep. I sleep a lot actually because I am still recovering. It takes 6 weeks for an open surgery plus withdrawals from Cortisol that I had 4-8 times the normal amount. Each day I am getting better, stronger and happier! Once I am up and about more WATCH OUT WORLD because here comes Rae-Rae! For the next two weeks though my bed and I will still be good friends!


So that's my short story to catch everyone up. Now I can get back the daily program of good blogging:) Funny weird stuff that is always happening in this house like when I heard one of my boys say this week that when they were little they peed in their own eye.:)  Love you all! Its good to be back!


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