Saturday, August 16, 2008

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,


1 comment:

MaryO said...

Congratulations on entering the brave new world of blogging!

Best of luck with your upcoming surgery!