I posted this on the Cushing's site, but I'll post it here too for my friends and family and anyone else who reads my blog, but does not see the Cushing's site. Plus, it saves me spoons to just cut and past. That remeinds me, I need to find the "Spoon Theory" and post it on my blog. It's good for everyone to read, so you understand what it's like for someone with a chronic debilitating disease. Anyway, here's my next post.
I'm 1 week and 1 day post op. I had my follow up with Dr. Chiang today. He is THE most awesome doctor I have ever experienced. It's hard to compare. I have had other really great doctors too, and even though I didn't have Dr. McC, I know he is awesome as well. So, I'll just say he is MY most awesome doctor! When we went in, I remembered my camera! I almost forgot to take it with me! I've forgotten each time I've seen Dr. F. and Dr. J. Anyway, today, I had my picture taken with Dr. Chiang. I'll have to put it on here, after I'm home. I will share pics, but I can't right at the moment. First, let me tell you, I'm very emotional after this BLA. It's not depression, or even messed up hormones. It's just the pure realization that I just survived Cushing's, and I'm facing a life full of possibilities again! I'm full of gratitude, relief, hope, joy... hard to put into words. I have felt, emotionally, as if I've been holding my breath the whole journey with Cushing's. We have no guarantees, and we don't know what will happen the next minute. Anyway, I had my husband take the picture, and he took too long. Before he could get it snapped, my eyes started to swell with tears and I told myself I was not gonna cry. Yeah right. That never works! LOL! I didn't break into a full out tear thing just at that moment. We were done with the picture, and Dr. Chiang was chatting with me a few more secs and he asked if I needed anything else from him. I said no, and I just burst into tears and said, "Thank you!" He started chuckling and gave me a big hug and told me I was welcome! What a sweet guy! He's not just a surgeon. He's so humane! Of course we all know he is, but it's just really hard to put it all in words how good he is, in so many ways. Ok, enough of the mushy stuff. My path report was back, and Laverne and Shirley kept somewhat of their girlie figure. They had both gained some weight, but not real bad. Of course, the Keto I took before surgery probably helped to shrink them some. The left one (Laverne) was 7.3 grams. Normal is 4-6, so not too bad. The right one (Shirley) weighed 7.9 g. and had hemmorhaged a bit. It was an area of 1.0 cm at the greatest dimension. No nodules or masses were found in either of the girls. Even though they were not overly abnormal, he said it was still what was needed to get my over production of cortisol stopped. So, I guess maybe both of them had a few too many milk and pepsi's. LOL! This was the aboslute roughest surgery I have ever had. I am guessing that my body always gave me excess cortisol before. Can't do it now! Ha! The other problem is, I have found out with this surgery, more than any other before, I'm allergic to almost ALL of the "good" pain meds. Today, he gave me Demerol. That worked good for me in the hospital. It's just not long acting, and it makes you drowsy (very). However, I need that for better healing. So, Demerol it is. My inscisions all look good. I got my bandages removed today. I'm still so sore, and have some big bruising (I don't know how it compares to others, but it's big to me, LOL!) My weirdest thing is my stomach is numb in the front. He was stumped with that, but I have had at least one other person tell me they had some numbness after their unilateral adrenalectomy. I'm hoping that will come back soon. He thinks it will. Not only is it numb, but it stings because it's not totally numb. It's kind of in that twilight area. I don't know if I've lost any weight or not. At this point, I don't even care. I know it is coming. It is really the least of my thoughts. I'm just absolutely about to burst at the seams for the way I feel. I don't know how to divide the mental aspect from the physical aspect. They go hand in hand somwhat. I'm sore, that's for sure, and in that reguard, I don't feel too well yet. The first few days were unbelievably hard. I assume that's mostly because of my pain med issues, and my enormous gas bubbles in my shoulders. Those things will bring you to tears faster than anything! Each day gets better. Melly told me (before surgery) it's like this. You get about a teaspoon more of energy each day, and I think that is the most accurate way to describe it! Each day I am stronger, I feel better, I have a bit more energy, but the blessed part of it is, it lasts all day (for me anyway). When I was cycling, I was all over the place all day long. I might feel better for a little bit, but lose it quickly. Now, I'm not, I'm constant! Each night I go to bed, I tell myself that tomorrow I'm gonna feel even better, and I do! I don't just wish and hope for it. I know it's a fact and it is going to happen. I know there will be bad days. I still have to wean, and of course we are not immune to flu and such, but over all, I know I'm getting better, and it's only going to keep improving! I have joy again! That zest for life. The first few days, I can't say that was there. It was just too rough to deal with pain and getting to the toilet and getting any sleep. When I had Cushing's, I went to bed knowing tomorrow would be a bad day, I just didn't know how bad. It might be "better", but my "better" was just to a lesser degree of bad. What I have now is awesome! I have some improvements already. My skin tone is better. Not so red, bumps disappearing. Sleeping better, even with the pain, no jolting awake, no HELLFIRE racing up my throat and choking me in the night, improved blood pressure (even on my hydro!), my face has slimmed some (I think), my husband says my stomach is hanging more (meaning it's shrinking and dropping further, it's a compliment, I promise!)... I'm sure there are others I'm not thinking of right now. I'm currently on 50 mg. of hydro. Dr. Holmes will start my wean when I see him for my follow up. I take 20 mg. at 5 am, 20 mg. at 11 am, and 10 mg. at 5 pm. It's my own dosing schedule. It works good for me. The florinef has not made me swell bad, so far. I'm not nauseated, and struggling with that yet, thankfully. You know me, I'm gonna get that tape measure out and the camera, all through this journey back to health! I'm forever grateful to MaryO for supplying a means for me to have access to wonderful information, and finding friends I would have otherwise never known. I'm thankful for each of you. For being a voice on the other end of the phone, a cheerleader on the down days, when my posts were not so up beat. I love my Cushing's family with all my heart! You all are so dear to me! See... I'm getting mushy again! I have no real words, enough, to thank my wonderful husband for sticking by me through all of this! He gets it, and he helps me! Most of all, I'm so very thankful to God, for seeing me through each day, one day at a time, and getting me to where I am now.