Friday, February 26, 2010

Steroids Ramble

Doctors have always been a huge part of my life. Even before my CF was diagnosed I dealt with them pretty regularly because of my cleft lip/cleft palate. The truth is however, I have always despised them and until recently only had one that I ever trusted, my pediatrician. She inspired me in so many ways. You have to understand that I was under her health care until the age of 21, when I was then transferred to the Adult CF clinic. I remember the absolute horror I felt to this day when learning I would have to leave my childhood days at one hospital and trade it for a big scary adult hospital.

Speaking of I hate hospitals too. They smell funny and they are full of sick people. Wouldn't you know I have never considered myself one of "those" sick people. Not sure why. I just have always kept my identity separate from my disease. No matter how many hundreds of times I drag myself into this place, it never feels normal. It always feel foreign. Honestly I woke up in the middle of the night a few nights ago to go to the restroom. The walk from my bed to the bathroom is a short one, like two steps. I walk into the bathroom and catch a glance of myself in the mirror. My hair was a mess, tied in knots all around my face and my eyes half shut from slumber. My heart jumped a little and suddenly I was wide awake. I looked around me and realized for the first time in my life, "I AM IN A HOSPITAL". It was like uncovering an ugly hidden truth. I know what you are thinking. First of all I must be crazy, which I don't claim to be completely on my rocker all the time, but at least I am wise enough to know that I'm not. Second, am I serious? After 26 years of hospital trips, being sick, going to the doctor and medicines I just now figured out I am in a hospital and I am sick. It hit me in a way I suppose news would hit someone who was newly diagnosed with cancer. I climbed back into my HOSPITAL bed in my HOSPITAL room and turned this new thought over and over in my mind. How much have I been in denial? How bad do I truly want to ignore what is happening to my body?? The truth has been there for 26 years, but it has been hidden by a lot of I feel greats, my cough isn't like theirs, and who cares what my numbers are I am breathing deep! It wasn't a sad discovery, just more like a shock. This wasn't depressing news but rather encouraging news. Yes I do everything I can to keep myself in great health. I am not perfect but I do like to think I go above and beyond of what is asked of me from my doctors. However I don't feel like the REAL reason behind what I was doing registered with me until now. I feel as if I have been taking care of myself to make the doctors and everyone else around me happy. After all it feels great when you get a pat on the back from your CF team for hitting the gym so hard, or eating great. So now I have new motivation. My lungs are sick. There I said it. It is true. They are. So from now on when I am hustling it at the gym, it will be for that very reason!!

***I would like to put in a note here stating that I am currently on steroids for my lungs. Anyone who has ever been on steroids knows your mind races away with you and right now it is hard for me to catch up. So please just hang in with this blog post. I know the writing skill is borderline lame and not sure there will be much of a point at the end other than I have managed to record some thoughts from this visit while my mind is stretched between insanity and pure genius. If this was a rough draft to an essay paper, there would be arrows pointing to parts of my story to insert new information. But since it isn't, it really in all actuality is a big jumbled mess. You know the commercial "this is your brain on drugs", well this is my brain on steroids. So bear with me.***

Now going back to what I said earlier about doctors. I trust doctors I see. Does that make sense? Does any of this really? Okay I am going to keep going with it anyway. I have a team of doctors here that take care of me. They are usually on rotation and I can count on seeing a different one each admission. Sometimes I get lucky and get to see Dr. Y, who is my favorite although we don't always agree. I respect him for his knowledge and effort. =) I also trust him to make the best decisions for me and my body. However sometimes, I see a totally random doctor that I have never laid eyes on. This usually is a first indicator that my stay is not going to be pleasant. First for all of my friends who work in the medical field or are trying to become doctors themselves, let me give you some patient to health care worker advice. I don't care what news you are delivering to your patient, bad or good, NEVER go into their room like you are entering a funeral! There is nothing more discouraging than the person who you are counting on to pull you through to have a completely negative and grim view on EVERYTHING! Now I understand sometimes news is bad. You can't just go skipping and singing into a patient's room with a big smile on your face and say "You are not going to make it." That would not go over well. I think it is finding a good medium on how to treat your patients. You have to remember that the mental well being of your patient makes up over half of how they are going to over all feel after the conversation is over. Words are powerful. They can lift a person up and they can also tear them down. So be careful with the way you explain things. NEWS FLASH! I know I am sick, I feel my lungs wearing out, I understand when I am well and when I am not. So there is no need in making a situation worse than it already is. I guess where I am going with this is I hate new doctors, whom I have never seen. It concerns me how much they truly care about my being well, or if I am just simply another number to them. They don't realize I am a mother and have a life that I totally adore. I truly feel if you become a doctor to make money, you are in the wrong business. If you see your patients as another statistic you just need to all out find another job.

This admission has went really smooth for me. I know it may seem like I am venting however this is really a deeply embedded fear that I have inside of me. I feel as a doctor, when you lose a patient, you should feel as if you lost part of your own family. I have heard it said so many times that it isn't healthy for a doctor to develop that kind of relationship with their patient. That they need to not be emotionally attached. Yet think about it, if you were living with a terminal illness, wouldn't you want the one person in charge of overseeing your health to care about you as if you were there own child?? Being a doctor is not an easy job. That is why I totally give credit to the ones who do it and do it well.

This started out titled as "White Coat Syndrome"...haha however STEROIDS RAMBLE is much more suiting I do believe. The run on sentences are making my head spin. Not to mention the lack of stretching my vocabulary beyond the words "and" and "but". I think I have written enough now. If anyone manages to get anything out of this word mangle then I will be happy.


  1. I think it was very well said! I believe more people feel just like you do but just dont know how to say it or they are afraid to say it. Writing makes it easier for myself to get through things and it looks like we have that in common. I enjoy reading your blogs, so keep them coming! :) Hope you are feeling better and get to come home soon!

    Amanda Shelton Elkins

  2. I hope you get well soon. I love reading you writings (word usage?), and you express yourself well, even if you are on sterroids. I totally agree with you on the dr issue. The best drs truly care for their patients! Take care!! :)

  3. If it makes you feel any better, I totally understood every word of your blog. Of course that's probably because I've been under the influence of steroids many a time and written many a rambling post.

    Hope you are feeling better. Are you headed home soon?

  4. You read my mind and, judging by the comments on here, a few other people's minds as well. Write how you feel. If you feel "rambly", then write that way. Love to read your stuff. Peaceful and positive things!

  5. Awesome post. And I totally understand everything you are saying and agree as well. I've been through so many doctors, like most of us have up and down days with them. But I truly hate it when the healthcare professional that is attending to your care doesn't really care, rather they are just doing their job for the money (rude bedside manner people). I'm thankful for thos doctors who have allowed me to form a relationship with them as well as my transplant coordinator.

    Hope you are handling the steroids ok. Praying for you daily...hoping you get to go home soon!! Love ya!

  6. Love the steroid ramble! From one Somer/Summer to another Great post! Feel better soon! Sending prayers and positive thoughts to both you and Jill. Xo