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.

Friday, February 19, 2010

The Face of Jill

I know so many of you have already reached out to Jill through prayer. I can never thank you enough. As of right now, Jill is still in the ICU. I am asking for everyone to continue to pray for her. I thought since so many of you do not know her that it is important to give her a face. For you to know that she is a real person, with a real life. Here are a few of my favorite pictures of her.

This is my best friend Jill........

....she is a fighter......

....she loves poetry and Bob Dylan......

....she is a mother......

....she gives every inch of her life to her children......

....she loves the smell of incense and wildflowers......

....she is a free spirit......

....she is a dreamer......

....she is a wife......

....she is a sister......

....she is every bit of a flip flop wearin', peace sign throwin', tree huggin' hippie.

This is Jill........

....she is a best friend.

My life is better just because she is in it. Please continue to keep her in your prayers. Also tell her story to others and ask them to pray for her also.

Mark 11:22-24 (New International Version)

22"Havea]">[a] faith in God," Jesus answered. 23"I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. 24Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. b]">

Sunday, February 14, 2010

Praying for Jill

I have really been struggling this past week. I started a Life Group at my church and we are studying a book called Victory Over Darkness. I never realized how tested I would be. This book is incredibly difficult for me. It challenges me to look at areas of my life and my past that honestly I would much rather just forget even existed. Sam and I both are doing the class together. Our hopes are to come out on the other side stronger Christians and most of all with a deeper intimate relationship with God. So far the spiritual warfare has begun and the attacks have been hitting my life like crazy. However I am clinging to this study with everything I have. I decided when I started it I would not back down and quit, NO MATTER WHAT!!

The start of this study could not have come at a worse time. My best friend Jill is in the hospital with pneumonia. This blog is really about her, not my Life Group. Jill and I went into the hospital together for the first time when we were about 7 or 8 years old. We became friends instantly and pretty much have clung together ever since. We both got pregnant around the same time also. Jill went on to have another child, a little girl, but I decided against having anymore. Jill and I have lived different lifestyles yet still remained so much alike. Almost all of the things we like mirror each other. We do have different opinions about things but still despite those differences remain closer than ever. We talk on the phone nearly every single day, sometimes for just a few minutes, and sometimes for hours at a time. We share all of our secrets, dreams and even the stresses every day life can bring. We rejoice with one another when life is going great, and we cry with one another when life isn't going so great. She has been a rock for me. I have lots of friends and people whom I can lean on however it is different when you are sick. You never fully feel as if your friends completely understand where you are coming from. Sharing the same disease Jill and I have a bond. Jill is really the only CF that I have made friends with and kept a friendship with over time. Back in the 1990's when the doctors made the discovery that we were sharing bugs and infections, I became extremely distant from my other CF friends and began to isolate myself from them on routine hospital stays. I always always always wear a mask over my face when I leave my hospital room and it has never been something I rebelled against, like so many other fellow CFers have. However my friendship with Jill really withstood the test of my anxiety and we remained close. We went from having sleep overs in each others hospital rooms (yes we did that haha) to talking on the phone and computer. Sometimes when I would feel gutsy we would venture out in the hospital together, but I still always wore my mask no matter what. Jill is this incredible ball of energy. She is such a free spirit. We both have walked a fine line of being a modern mom and a tree hugging hippie. She loves wearing flip flops, sunshine, playing in the rain, making art, Bob Dylan and just simply living. We were both born after our time. I could so see us at Woodstock, just living and loving. Jill is a mother to two beautiful children, Ethan and Rylin. They are in complete, her life. She lives for them. Everything she does revolves around their lives and she wouldn't have it any other way.

Right now Jill is sick and I am really at a loss for words. This past week I have been sickened with worry. Jill is currently in the ICU at UAB hospital. I am asking for each and every person who reads this to please pray for her. I don't care what you believe, what religion you are, or where in life you are at. I don't even know if you believe in God and I really don't care. About five years ago I was lost. I was so far off track of who and what God was. The amazing part is God did not nor does not NEED me to believe in Him to exist. He is there. So I don't care what you believe, if you know me and you care about me, close your eyes and just ask God to watch over Jill, to heal her, to bring peace to her.

A few days ago I really felt like I was going to lose it at any moment. I finally broke down when I went to Starbucks and after three tries they still didn't get my coffee right. I slammed my cup into the trashcan after one sip and ran out. That is so not like my character to do something like that. When I got into the car I put my face in my hands and started crying. Sam kept saying he was so sorry my coffee wasn't right and we could go to a different Starbucks up the road and try again. But the truth was out. The coffee was not the true issue, it was my best friend was laying in a hospital fighting for her life and I had no control over it. I can't help her, I can't talk to her, I can't even be there to hold her hand. I had had enough. A single cup of coffee finally broke me. I felt like I would never stop crying. I was so tired. So I came home and wrote my previous blog. I felt like if I didn't get it out then it was going to consume me. It was literally smothering me. I had to tell how I was feeling.

It didn't make Jill better, but it did give me some peace. I remember now that God is bigger than me, bigger than this disease, and even bigger than the monster Jill is fighting. It is His story, not ours.

I feel as if in writing this my words are not flowing. They seem so jumbled. But to be honest THIS IS REAL! It is messy, it is horrible and it hurts.

I am going to leave you guys with Jill's quote on her FB page. It soothes my soul every time I read it. It is almost as if Jill is speaking to me. It is just what she would say in a situation like this. She would be so optimistic and full of hope.

It simply says......"Even the sun has to fall to rise again in the morning."

Saturday, February 13, 2010

I Pray

I feel so numb. Life is so different than the sweet lost time of yesterday. The air around me is stale and I do not like being the host to this new emotion. Shock has taken residence here and sadness is slowly trying to move it. I feel the earth shift underneath me and I feel like I am falling into a rabbit hole. Yet this is much more darker and grim than anything Walt Disney could have ever dreamed up. I stop and watch everyone move around me in slow motion. For the first time in my life I look down and realize I am clinging to this life with blue fingers. You lay in a hospital bed, in a room, in a place I cannot touch you. Your mind is sleeping and your body is fighting. I want to be a good friend. I want to come to you. I want to fix you, but I cannot. For the thing that is holding you hostage can too attack me. Helplessness overwhelms me. I pray for you. I pray until I feel like the very being of who I am is going to collide into some sort of spiritual coma. I look to the sun and with tear filled eyes pray that you too will soon feel the warmth of life some day soon. Our lives so different yet the same, almost as if we are the same person living the same life two different ways. You have been with me from the beginning. Two little girls twirling circles in our nightgowns, holding hands, running and laughing, and shielding one another from life's twisted details. Knowing the monster in our closets no where neared compared to the monster lurking in our chests. Wearing flowers in our hair and loving God, life and grace. Refusing to fit in and marching to the beat of our drums that we played often and loudly hoping and dreaming that the world would hear. That they too would know of the life and love we so desperately clung too. I am better for knowing you. I am stronger, happier and healthier. I have nothing to offer you my ill kissed friend. I am no better to you now than the homeless who live on the street and beg. My eyes are open and I feel as if this life is a cruel illusion. God is here hanging onto my soul with compassion. I feel His embrace and I steadily let it consume me. I pray for sweet peace. I pray. I pray. I pray.

Thursday, February 4, 2010

Making the Video: Part One

So I am offically home from Tennessee. It was a very emotional experience for me. For those of you who don't know I am currently shooting a video with a company called Wadel and Associates. The video is going to be a short documentary telling my story. My story is simple yet complex. To be honest I really didn't realize how raw this would be for me. I am the sort of person who wants everyone around me to think I have it all together, all the time. When actually I really don't. Just like everyone else I have good days and bad days. I am learning more every day about myself. This whole experience so far has definitely got me doing some soul searching. I have never had to deal with my disease like this before. It has never been in my face so much to the point I can't ignore it. To be honest, this has and is going to be a very uncomfortable for me. Not only am I answering questions about my biggest fears I am also letting a camera into my home to film me at my most vulnerable, while strapped down to a vest, shaking and coughing, and just the parts of my disease that until now have remained private. It is time to be real though and I believe God is going to provide healing for my spirit through this.

Tuesday we did the interview. It was so real, so raw, and so unbelievably emotional for me. I left the studio feeling cut open for the world to see. Wednesday we did some shots of me in downtown Chattanooga. That part was really easy, other than the standing still for 10 to 15 minutes so the shot could be got. I will be making several more trips to Chattanooga before this is over. Most of my life over the next month will be caught on camera. I suppose I thought this would be easy since I am a writer. I never realized how much I actually hide behind my words though. How often I don't really say how I feel, but rather how I think others want me to feel or want me to be. They need me to be strong, almost like I am a super hero....but I'm not. I am just a girl who wants to live a normal life. My hope is that, what does come across in this video is God is all over my life! I do want to bring awareness to my disease and help raise money however, I would much rather someone watch the video and give their fight to God rather than go to the website and make a donation. I am intensely praying over this project and I really feel as if God has a hand in it. He is going to use my story, and that makes me happy. =)

As for Wadel and Associates, I simply cannot say enough about these guys. They are close friends of ours and without them this would not be possible for me at all. I really believe God brings people together for a reason. He knew they could help me, and they are. They are so professional and compassionate. I don't think they realize what a healing process this is going to be for me. To finally rip off the band aid and treat the infection from the inside out. They are amazing, and my life is blessed ten times over just for having them in it. They normally shoot commercials so this is a change of pace for them as well. This project has been a dream of mine for a long time. I can remember being a little girl and doing "pretend" interviews with my cousins, some of which I still have on tape somewhere. I am sure they would be good for a laugh now! =)

Everyone keeps asking me once the project is done, what then. What will happen to the video, who will see it, what is the purpose. My answer is I really don't know yet. All I can say is God whispered this deep into my chest along time ago and it has been gnawing at me ever since. I have actually had sleepless nights over this for years. It was something I have put off simply because I was not ready to face my reality. I am nervous, I am excited and I am scared to death. The time has finally come for me to let go and follow. God is leading, so as far as what happens next, I have no idea. I am leaving it completely up to Him. But I do know for me, He has a plan and a purpose. So this is me, a child of a King, completely raw and torn open. God is my hope and all I can do now is that....simply hope. =)