Thursday, May 28, 2009

One week, one day post op

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.

Tuesday, May 26, 2009

6 days post op

Today is a better day. It's pretty exciting to go to bed at night, and know that the next day you wake up, you are going to feel even better!

Last night, my stomach was so sore... I can't even describe it, really. My voice was shaking as I was trying to get myself laid in bed, and tell Andy how bad it hurt! If I lay on the one side, it's not bad, but you know, it is not comfortable to lay in one spot all the time. If I try to turn over, it hurts! I feel all of the organs inside my body, shift. They get stuck on my ribs and such, and it is the grossest and most painful feeling.

I have pain pills, but I don't take them often. Pain pills do not seem to agree with me too well. They do help, so I do take them occasionally. I usually reserve it for bedtime, or naps. When I woke, to take my morning medicine, I decided I would take another pain pill before going back to bed. I decided to check for messages on the computer first. I was sending a message to someone, and started feeling really light headed and faint. My hearing on the left side was muffled or gone. I had to hurry up and get laid back down. Some pain meds make me itch. This one does a little bit, but not as bad as the Percocet. I really liked the Percocet, other than itching. It never made me feel dizzy or any of this stuff. Tylenol 3's make me feel light headed and icky. The crazy thing with this Vicodin is, one time, it will make me a little bit itchy. The next time, it will make me light headed, muffled hearing, etc. I think I have a different reaction to it each new time I take it. I really think Ibuprofen works the best for me. I just don't know if I can take that. It's a blood thinner, and I wouldn't want to start any internal bleeds.

I've had 5 babies, the first 2 with no pain meds, the last 3 with epidurals. I've had a cyst removed from the outside of my ear, a deviated septum fixed, a hysterectomy, and brain surgery. Nothing has hurt me as bad as this! My best guess is that I had excess cortisol all the other times, and that is what helped. At any rate, I'd do it all over again. It's absolutely been worth it. Each day that I feel better, is so exciting.

Sunday, May 24, 2009

Post BLA surgery

I'm 4 days post op, now. Each day is better than the previous, but I can tell it will be slow going. I know some people have said that the BLA surgery is easier for them than their pituitary surgery. My pituitary surgery was a piece of cake. This has been worse for me, by far. I will not lie. This has been the most painful surgery I have ever had. It was worse than my hysterectomy, but that's just me. I suspect that is because I had Cushing's with each of my other surgeries. It would have made my body put out extra steroids. I believe that would have helped me with each surgery or birth, to feel better. Now that Cushing's is gone, I don't have my body putting out extra steroids now.

I'm still on high doses of steroids, so it will be a while before I see a lot of the positive changes. My face is already looking better. I have lost most of the redness and it looks slimmer to me. That is probably all I will see for a while. Right now, I'm on 50 mg. of hydro each day. I will start weaning once I see my endo, which is June 11th. I feel pretty good, so I'm not looking forward to the weaning process. I imagine it will be pretty hard. It's something we have to go through though.

The gas pains you get from being blown up with air are unreal! They lodged in my shoulders, and it felt like severe muscle spasms. I was near tears, and biting my fingers. I'm usually good with pain, but that part was very bad for me. Pain killers don't help that kind of pain. Gas-x does, but you can only take a certain amount of it. They don't give you those at the hospital anyway. Thankfully, those gas pains are mostly gone. I'm still having them some, 4 days post op, but they are much better.

My right side is sore. I finally slept in the bed some. I've spent the first several days sleeping, sitting up on the couch with pillows stuffed all around me. That is not real comfortable, and I can't sleep for long periods of time. Now that I can stretch out in the bed, I'm getting a bit more restful sleep. I still don't sleep for very long stretches of time though.

I have seen definite improvement each day. I know that each day IS better than the one before. It's just going to take a long time to be totally well and healed.

There was a fire alarm that went off in our hotel a few days ago. I was sitting on the couch, taking a nap, and this thing goes off! It was blaring loud and I came straight off of the couch! We left the building. All I had on was my night gown, robe, and socks. We went to McDonalds to pick up some food and took a drive. I think that ate up some of my cortisol pretty quickly, but I did ok. I think the person working the drive thru was wondering why I was not dressed. LOL! If they only knew!

Thursday, May 7, 2009

I have a surgery date!

I felt like I was never going to get to my second surgery. I finally have a date of May 20th, at 1:15 pm. I can't wait! I'm so sick and tired of being sick and tired! I feel this surgery is coming none too soon. I hurt so bad, just to sleep. My shoulders have been hurting lately. My hips hurt, right at the joint. My foot hurts, my hands, etc. I feel like I'm falling to pieces. I feel worse this time than I did last, in some ways. In others, I felt worse the first time. This time, my bp has been more stable, and the first time it was a real mess! This time, my sugar has been wacky, and last time it was ok. This is one crazy disease! I just can't wait until it's all over.

Of course, I wonder if it is ever really "over". We have to deal with the aftermath of Cushing's sometimes. The longer you have had it, the more damage it has done to your body. Those high doses of steroids can be masking things you don't even know is there, until your cortisol is normal again. It's not an over night cure. It's more of a process over a year or so, to get back to normal.

Honestly, I just can't imagine what it's like to be normal again. I have not been normal for years. LOL! Seriously! My mind cannot fathom what it feels like to feel good for the majority of the year, and only have a few sick days here and there. Right now, I feel sick the majority of the year, and only have a few good days. It will be such a change. Then there is learning to live life without adrenals. I'll have to learn what my physical limitations are. I use to be superwoman. I use to work, work, work my head off. I'm sure I will have to learn to scale back, even when I feel better, because it eventually catches up with you. It's not just, "Oh, I'm achy and extra tired." When you have no adrenals, overdoing it can land you in the hospital. It will be an adjustment period for quite a while. I'll have to learn how much extra medicine I need to take when I get sick, if I have an extra busy day, etc. Lots to adjust to, but I'm looking forward to all of it!

Friday, May 1, 2009

It's just peanut butter....

A couple of days ago, we were outside working on starting a garden. I do more sitting and watching than anything. I'm pretty useless at this point. Anyway, my youngest, Zane, looks in his big sister's ear. He says, "Eww!", and he turns her head toward me like I can see it from where I'm sitting.

I asked him if her ears were dirty and he said yes. Then he stuck is finger in her ear and starts twisting it around. I said, "EWWW ZANE! That is gross! You don't stick your finger in someone's ear and start cleaning it out!" He said, "Aw, it just peanut budder! I don't know how it got in there, but it just got in there."

Where do they come up with these things?