Friday, August 29, 2008

I'm a Cushing's survivor!

I made it! I'm on the other side of Cushing's! Surgery went great. It took a long time. I was told it was a difficult surgery. My tumor was very tiny, and it was between the anterior and posterior pituitary. I lost quit a bit of blood during surgery, but they got that stopped (obviously), and I'm doing good.

My surgeon is sure I have a cure. I'm pretty sure he is right too. After surgery for Cushing's, they check your cortisol levels, to see if they drop really low. If they do, that is an indication for a cure. They give you replacement cortisol, until your body starts making it again. The second morning after my surgery, my cortisol dropped really low. It was 0.7! What a sweet number to hear! The hydro they gave me immediately after telling me those numbers was even sweeter! I had been crashing ever since the surgery, and I knew it. I felt worse by the hour. I was chilling so bad my teeth were chattering, I had a headache, felt like puking, and I was so sore all over! I told the nurse I felt like someone drug me through a knot hole backwards, stomped on me, and ran over me with a train! When you've just had surgery for Cushing's, that's really good news! It doesn't feel so good, bit it is!

Now I have to go through this process of withdrawl. Not a fun prospect, but I think I'll be fine. I know what adrenal insufficiency (AI) feels like, and hopefully I will be able to stay on top of it. I hate having to go through feeling so weak and sick, but it's all part of the process, and I do look forward to that day, when I feel new and whole again. Even though I feel rough right now, I can tell I already feel better in some way. I can't quite put my finger on it, but it's there! I have not lost any weight, in fact, I've gained about 4 pounds. I have, however, lost inches. I don't know the total, but I know I lost 1.5 inches in my stomach/hip area already! That's an improvement.

At the hospital, they had me take 50 mg. of hydro at 8 am, and 10 mg. at 8 pm. The endo who diagnosed me usually has you take it at 8 am, and 1 or 2 pm. A lot of people can't sleep if they take their hydro later than that. If I take my sleeping pill, I can sleep like a log, and then I'm not feeling so sick in the mornings either. Their reasoning was that the last dose has to hold me through until 8 am. That makes sense to me. They had me on the 50/10 for 2 days, then I dropped to 20/10. That's half! I felt it. I felt OK, and slept most of the day. The next day was the day I came home, so I took 40/10 that day (which was yesterday). I went back to 20/10 today. I'll see how I do on it. I have a feeling that weaning will be a long process for me.

Monday, August 18, 2008

What a day!

Whew! I'm pooped! I've cleaned and cleaned and cleaned! My house is sparkeling and dust free! It looks awesome! Too bad it never stays that way on it's own! Ha! I love it when my house looks like this, I just don't like how I feel when I do it! This will make it easier for others to keep up on, and take care of while I'm down after surgery. I'm ticking off my list! I'm down to paying bills, doing laundry, grocery shopping, and packing! I'll do the bills in a little bit, and everything else tomorrow. Tonight, my husband said, "I hope you plan on resting up when you are in the hospital!" He says I'm having the "nesting" instinct and I'm about to give birth... to my tumor! LOL!

Making progress...

My husband and the kids helped me get some things done this weekend. I got my bathrooms cleaned, and the kids' bedrooms and closets cleaned. That was a major project! We moved all of their dressers to the basement where the laundry is! That will make laundry easier, and it also gives them more space, and makes their rooms look better. Now they have no excuse to have clothes on their bedroom floors! I still have a lot to get done, but I should be able to do it all in the next 2 days. I feel like I made a lot of progress! Now, to tackle the mountain of laundry. I call it Mount Washmore! I get it caught up, only to get behind again. With a family our size, it doesn't take long to get backed up!

I've been thinking about surgery. I'm not sure what to expect. I do, but I don't. Since everyone reacts differently, I don't know what MY body will do. I wonder if I'll crash, if I'll be puking, freezing, etc. It will be a good sign if I do, but doesn't sound like too much fun! LOL! I guess I'll be finding out in a few days!

Saturday, August 16, 2008

Here we go again!

Well, it's another day. I have a headache! I mostly get them over my right eyebrow. It is screaming at me, and so is my 4 yr. old. I wantgumIwantgumIwantgum! Ok, forevermore, get the piece of gum! He's asked for gum for days, and I always say no. Today I cave in. I don't want to hear it anymore! Of course, since he gets one, everyone else wants one too. Now they are quiet... for a little bit.

I should be doing loads of laundry, packing for surgery, cleaning house, shopping for groceries, paying bills, and here I sit, blogging! I feel most productive or active at least, late at night. I am awake in the day, but I don't feel alive. Some days I have to take a nap, others, I don't. I'm excited about my surgery coming up, I just lack the energy to get busy to make it happen! I look forward to having energy again someday! It would be nice to feel alive, rather than like I just exist! Some days the feelings you experience with Cushing's are just really hard to put into words. I don't know that they exist.

Ok, I'm off to get busy. The longer I sit here, the less I get done! Surgery will be here before I know it! Do you know anybody who was excited to find out they had a tumor inside their head, or that they had a disease? Only if you know a Cushie! We get excited about these things, because we have to work so hard to find out what is wrong with us, and we have to prove that it's there. Basically, we have to prove we are sick, and once we do, it is sweet validation! It is hard, hard work. Harder than you would think. It gets very frustrating and discouraging! There are days you wonder if you are on the right track, or if it is worth it all. Deep in your heart, you know it is, but you have those moments of despair and doubt that take over and threaten to squeeze the life right out of you! The support of our Cushing's community keeps us on track! I'm so thankful for all of my Cushing's friends! If it wasn't for them, I doubt I would be here, in this position today! I probably would have given up a long time ago, and resigned myself to living as long as I could, sick!
Why did I pick this title? Well, that's what I feel like most days! I wake up wondering if anyone seen the license of what hit me!

I use to feel like my life so was so on track. I'm a bit of a perfectionist. I always use to be a meticulous house keeper. Everything had a place, and everything needed to be in it's designated space! That kept momma (me) happy.

The sicker I got, the more my house went by the way side. Things that use to be really important to me, didn't seem to matter at all any more! I can only stand so much. I have to clean it somewhat eventually, but I'm not cleaning it every week like I always use too. I have very little energy left these days, so I save it for the important things in life. When I can't do the things I want to do, or feel that I need to be doing, I feel like my life is off track. That gets very discouraging some days. I just keep chugging along, hoping to get back on track one day real soon.

Who knows exactly when my journey with Cushing's actually began? It was a long time ago! I'm sure back into my teen years, and possibly into my young childhood as well. After marriage and the birth of my first baby, the weight started packing on. That was the big physical sigh. I also had fuzzy hair on my jaws/face, I had brown spots on my face that I'd never had before. I was tired a lot. At times I felt like I couldn't get enough sleep, and others, I just couldn't sleep. I'd feel anxious and paranoid. I had no clue what was wrong with me, and the doctors didn't either. I really didn't have the energy to deal with it, so I dropped it.

I had opposite type cycles for years, had no clue what they meant. Doctors all said that everything was fine. Well, if everything is fine, then there is no sense in pushing the issue right? So, I was meek. I was resigned to, "This is the life of Grace. This is what is normal for Grace. Get use to it." The problem is, as the years went on, the problems got worse. I developed more and more symptoms. I reached a place I could not ignore what my body was screaming at me. I HAD to find out what was wrong, and this time, I was not stopping until I knew the answers. This is where my real journey with Cushing's began.

Where do I start? I had done some research for the kids... looking at pictures of child hood diseases to see if they had chicken pox. There was a picture of Cushing's on that page. I'd never heard of it, so I clicked on it, and seen this lady with a bright red, round face. Hmm.... Well, my face was not that round, but it did get red. I was intrigued! I had to know more. So, I looked up more on Cushing's disease. There I found that a lot of the symptoms seemed to fit, but only to a point. On some things I was opposite as well. That really confused me. I didn't know how it could be both when they were opposite. I read a chat interview they had done with Dr. F.. In that chat, he was talking about cyclical Cushing's, and how you would have opposite symptoms. Ding, ding, ding! Winner, winner, chicken dinner! I knew I had just won the prize! Not it was making total sense to me. I was so excited, I about couldn't tear myself away from the computer! There was so much to learn! I was sucking it up like a sponge! I felt hyper and giddy to finally feel like I'd found out what was wrong for me! It had a name, it was curable, and I was just thrilled out of my gourd!

I met lots of wonderful people on the Cushing's help and support website. What a group of people! Long story short, I cut the petty stuff and flew out west and seen Dr. F. so we could get the show on the road! I came back in July of 2007, and I was diagnosed with Cyclical Cushing's disease in May/June of 2008. I had one surgery scheduled that I had to cancel for financial reasons. I rescheduled with Dr. J. in Pittsburgh, PA. Surgery is coming up next week. I didn't blog during my testing phase. I decided I would blog (0r try to) during the recovery from surgery. They will be taking my pituitary tumor out of my head through my nostril. I'm sure that will be the biggest booger that has ever come out of my nose in my life!

I hope you enjoy reading about my journey with Cushing's disease and recovery. I have 5 children who keep me entertained and do something or say something funny, almost daily! They are such a blessing!

I'm at the end of my testing process right now, at least for this round. If I don't get a cure, I'll be testing again. No matter what, I will keep on this until I beat Cushing's disease. I would like to encourage any of you who are starting on this journey to better health, if you feel that you have Cushing's, more than likely, you do. It may take a long time of testing, it takes a lot, did you hear me? A LOT of patience and perseverance on your part to get to the finish line. If a doctor ignores you, then you know it's time to fire him and find a new one. Educate yourself so that you are educated in this, you are able to go into the doctors office and have an intelligent conversation about all of these test scores and what they mean. If your doctor is offended by that, then you need to move on. Here is how to tell if you have a great doctor.

#1. Your health is his number 1 goal.
#2. Your PCP listens to you.
#3. Your PCP takes time with you. He doesn't rush in and out and throw prescriptions in your lap!
#4. Your PCP acts like you have a brain, and you just might know how to use it!
#5. Your PCP is not threatened that you read things on the internet, or in magazines! In fact, he welcomes it.
#6. Your PCP is asked a question and he says, "I don't know... but I will find out". This means several things. He is not a know it all, he is not afraid of his inabilities, he is interested to find out, he is honest!
#7. Your PCP made a mistake, and guess what? He admits it! Now there is a rare find! There's nothing wrong with making a mistake, and it takes a real man to own up to it and make it right! Consider that!
#8. The office staff is friendly. If they are in a good mood, then they get along with him too. The office probably runs fairly smoothly.
#9. When your doctor sits there pondering over your situation, wondering what to do, he may not have the answers, but he cares!
#10. When your PCP tells you he hopes you have this disease, not because he wants you to have a disease, but because it offers an explanation of what is wrong, and how to fix it. He does not care that he is not the one figuring this thing out. Ultimately, he wants you to be well again. He is willing to say, "It's beyond my expertise level, and you need more help than I can give you, and good luck and keep me informed!

Next week I will be starting my life on a new road. I'm not sure where this journey will take me. I'm hoping it's a path free of Cushing's. In all reality, I know it might not be. I might need more surgery before I am totally free of Cushing's. I am determined to get rid of it, one way or another. It just might take me a bit longer than others, or, maybe not. Time will tell.

My goal is to try to blog through my recovery process to share with others what it is like, while it is fresh in my mind.

Hugs to all,