Wednesday, June 17, 2009

Doing fun stuff in life again!

We went to a friend's house yesterday and went swimming all day! We had a blast! My poor kids have not gotten to do anything fun for so long because I was so sick! They were exhausted! We came home and ate supper, and the 3 oldest passed out early, like right after supper!

Zane is going to be 5 next month. He was the only one who could not stand up in the water and touch bottom. At first, he was scared! He had on a life jacket and noodles, but he was scared. Well, it didn't take long before he was jumping in and going down the slide! He kept saying he was gonna "sunk" or "get sunked". LOL! None of the kids know how to swim. Carrington seemed to think he could just do what his little friend does, who knows how to swim really well. So, Carrington just jumps in, doesn't know what he's doing, then he panicked and didn't realize he could stand up in the water. I thought he was going to drink half of the pool yesterday! He would get on this alligator raft, and always end up flipping it, or get flipped, and try to drown himself again! They were getting pretty good with all of it by the end of the day. The older kids were actually learning to swim some.

We left my friends house and went home for supper. Andy made baked potatoes and hot dogs/brats on the grill. Then, we ran out to some garden centers after supper to find some vegetables and fruit for the late garden we are putting in. Then, I came home and looked online for places to stay for our planned vacation. It is never far from my mind how much I am able to do, and couldn't have done half of that in one day, before surgery. I'm not super woman again. It catches up with you. I started feeling sick to my stomach later. I was up past my bedtime, looking on the computer for places to stay on vacation. I had to just go to bed. I know I'm going to be really tired the next few days, but those days I get to do a lot, they feel so awesome! One thing I find myself doing, and that I've always liked about myself, is laughing! My friend and I were talking about people we went to school with, and old memories and we laughed and laughed! I find myself laughing a lot more these days. I LOVE to laugh! It feels so good! When you are sick and you feel miserable, even the things that are funny, just don't make you laugh like they do when you are not sick! There is a lightheartedness that comes with feeling well. I'm glad I've found that again!

Saturday, June 13, 2009

Picture time!

This picture was taken today. I'm 3 weeks and 3 days post op.

These are a bit messed up and out of order. I can't get them to load right. Sorry! This one was in the first week post op, after my BLA. I was on 50 mg. in the coral and white striped shirt.

Another one from today.

Another one at about 1 week post op BLA.

This was my surgeon, Dr. Chiang, from Brookfield, WI. He is an awesome surgeon! Besides his surgical skills, he's a very kind man!

This is a picture from before surgery. I was on the Ketoconazole at this point, but I still had "high" times. This shows how red my skin would get.

This was one of the last pics I have from before my BLA. I'm not sure of the time frame from this picture until surgery.

This shows how red my face and neck would get, when I still had Cushing's. I knew I had a recurrence when this stuff was going on!

My big ole fat face, with Cushing's, before surgery.

I finally got my husband to show me how to get my pics off of my camera. He had changed the program a bit, and I had to learn again. I don't like the layout the blog uses. It makes it hard (I think). Maybe it's just smarter than me! LOL!

You can see in the pictures that my face has lost most of the redness now. It has started slimming down, even though I'm still on 35 mg. of hydro. That's a pretty high dose, and I'm still seeing improvements! My lips use to be really red all the time. Now, they look normal again. Sort of pale in comparison. I think you can see how good I feel, just looking at my current pics. I feel so much better. I still get wiped out easily. I did a lot yesterday, and today, I slept all day long! Each day is still better, and that's so exciting!

Friday, June 12, 2009

And the wean goes on!

I went to see my endo yesterday. I get to wean again, and again, and again. LOL! As long as I am tolerating it, I can go down fairly quickly. I'm going to end up cutting out my middle dose. I'll wean down to 25 mg. a day, and do more lab work and see where all of it is, and see if I need to keep going down.

He had me cut my Florinef in half, at least for now. I have slight swelling. My bp was back up, so we know it's time for a wean. The higher dose of hydro can be causing some of my swelling too. He told me to watch my bp to figure out if I need more hydro or not. If I get dizzy from sitting up, or standing, then I need to take more Florinef.

It was a good visit. I got to ask about some other Cushie friends. I asked if he would be willing to see them, and help them out. Of course, he said yes! He is just amazed at how doctors are not helping us! There are plenty of us out there who are willing to be diagnosed! We are willing to do the testing, even though it is such a pain! We just want to be better. Some doctors have made remarks to patients saying, "Why do you push for this? Why do you want this disease?" How stupid is that? Who wants a disease? It's not that we WANT Cushing's, we just want to get the proper diagnosis and get FIXED! That really shouldn't be that hard to understand! I guess it's just the fact that unless you live with it, and you know how it feels, you don't really understand! We are not a group of people who go looking for diseases to have. We are sick people who are looking for answers as to what we have! Big difference! I'm so thankful I have found a doctor on this side of the US to help me and others like me! They are too few and far between!

My husband commented last night that my skin has definitely changed. It's much softer now. My cousin keeps commenting that she can't believe how "pale" I am! LOL! She is so use to seeing my face always bright red, and now the redness is gone, or mostly gone. It started looking a bit red again in the past few days, since I need to wean again, but nothing like it did before! People have commented on my face slimming down too. I don't notice my heart any more. I use to always be aware of it beating, or skipping beats, fluttering, etc. Now, it's so calm, I don't even notice it. There are just little things like that, that nobody can see, that I notice, and things like that make me feel so much better!

Friday, June 5, 2009

I'm a Weaner!

I'm a weaner! I started my first wean this week, on Wed. I'm expecting tomorrow, actually later today, to be a bad day for me. I felt nauseated off and on for a while, yesterday, but not real bad. It passed and I was fine the rest of the day. The weans are not fun to go through. Hopefully, it won't be too bad though. Doc H. said I could go down 10 mg., and stay at 40 mg. until I see him next week. Then, he will go over my weaning protocol. Maybe I can go down 10 mg. more each week, if I can tolerate it. I'll see what he says. I know Dr. F. is having his patients leave the hospital on only 25 mg. I left on 50 mg. I don't think I needed that much, but at times, I think I did, and I'm glad I had it.

I gained 15 lbs. after surgery, by the time I got home. Now, I've lost 5 lbs. of that. I will be glad when I at least get back to my pre-op weight.

I'm feeling pretty good. I'm still sore some, but each day is still getting better. Now, I'm off to bed! It's been a long day! I should have been in bed hours ago!

Tuesday, June 2, 2009

New milestone

So many things we do, each day in life, we don't give a second thought. We take it for granted, because we have always been able to do it. You don't realize it until it is taken away from you.

This morning, I read 2 chapters in a book! Big deal, right? Yes, it was! When you have Cushing's, you get this foggy brain, and there is really no other way to describe it other than foggy brain. That's what we all call it. You can't concentrate, you forget things very easily, and your comprehension is down.

I've always loved to read! I had noticed it was hard for me to read things. I had to really concentrate, and even then, it was hard to comprehend what I was reading sometimes. Some days were better than others, but overall, it was hard, always. When I went to California for testing, in 2007, I bought a new book to take with me to read. I had not read a book for a long time. For the most part, I'm just too busy, but it was also more than that. I had gradually lost interest, and really had not realized it for a while. When I tried to read that book, I only got to about page 3, and even then, I had to read it over and over, and realized I still was not comprehending what I was reading. My mind was thinking of anything and everything else while I was reading! I suppose it's similar to what an ADHD person experiences. I gave up on the book. I tried once or twice after that, and the same thing happened.

So, this morning, I got up to take my medicine, and I was hungry, so I got a bite to eat, and I'm awake for a while. I read my Bible, and then I was looking in my end table, and found that book. I decided to give it a try. I read to chapter 3! Not page 3, CHAPTER 3! I remember what I read. It was not totally without difficulty. I had to focus to learn who the characters were, and how they related to each other, but overall, I got it, and it stuck! Before, I just couldn't make myself do it!

I've never considered myself a genius, but I always got good grades in school. I have always enjoyed learning. Our entire life is a learning experience, and I feel like a sponge, trying to soak all of it in! It's very hard for people with Cushing's because you feel like you've been "dumbed down" for a lack of better words. I would always think this must be what it felt like, on some level, for my dad, when he had Alzheimer's. He was a very smart man, and he lost his thinking skills and his ability to comprehend. I know it was very frustrating for him, and scary. I felt the same way, until I realized mine was from Cushing's, and I knew once I got rid of the Cushing's, I'd get rid of my cognative problems.

It became very hard to spell. I was always a good speller, before Cushing's. Suddenly, I would spell words, and they didn't look right to me. I'd try a different spelling variation, and it didn't look right either. I'm talking about words we have known all of our life, and should come easily to us. You look at it and it looks like a foreign language to you. That's just so bizarre, and until you experience it, you probably can't comprehend. We end up having to think of another word, that means the same thing as the one we want to spell, but pick one we do know how to spell. It is very frustrating! When I get to typing really fast, I sometimes type words completely backwards, or I scramble the letters and make a whole new word. I usually see my mistakes, and correct them before I hit send, or publish, but I still miss a few! In speaking, I've created new words that don't exist. They just come out of your mouth without thinking about it. The excess cortisol does something to our brains, plus, having a pituitary tumor could have something to do with it!

Maybe that will help some of you to realize how much joy there is in reading just 2 chapters in a book! Try to never take the small things in life for granted!