What is and What is Yet to Be

I have been trying to decide the best way for me to write this post for several days now. The truth is there is no easy way to tell any of you this. I figured by now I would be pouring myself into this blog, documenting every single emotion, telling all how I feel, but honestly, I am not sure how I feel just yet. So I am going to write this the best I can. As a writer I wish there were some great imaginative words for this part. But there isn't. You are my audience. You guys have been so loyal to me.  So I am going to be honest with you. Sometimes honesty isn't pretty. Sometimes it is raw, real and ugly. That is how today's post is going to be. I can't stress about my sentence structure this time. My mind is too chaotic to even try to make it something great. Who knows? Maybe it will be great simply because it is real. Regardless, here is my update.


On the evening of Tuesday, August  10th, 2010 roughly around 7 pm I had a visit from my doctor who delivered news that will forever change my life. I am nearing the end stages of my disease. What does that mean exactly??? For me it means, Cystic Fibrosis has taken up residency inside my natural born lungs and despite my best efforts refuses to improve nor leave.

I have lived for about the past five years with my numbers in a critical state, with the fear of this new news lingering over my head. I have managed through a lot of blood, sweat and tears to maintain my disease, stabilize it, and keep my numbers hovering just well enough to dodge my new reality.

I do not feel defeated nor ashamed of my fight. I know I have put forth 200% of what has been asked of me. I have lived well and I have lived happy. However in the past six months my health has taken a horrible decline. CF has proven once again the monster it truly is. I am going to soon be faced with decisions that literally make me shake uncontrollably all over just to even think about them. However, I know GOD'S TIMING IS PERFECT!!!! His plan for me is WITHOUT flaws!

Not only have my numbers declined to around 25% now, but my quality of life is no longer what it once was. It terrifies me to see how quickly CF can step in and destroy everything in its path. In these short six months, I have went from working out at the gym two hours a day, running daily errands and simply just living to barely being able to walk from my bed to my kitchen, depending on oxygen certain times through out the day and planning my daily activities around how much energy I may or may not have. Some days I find myself in denial of it all. I have good days when I require no oxygen, and am able to do daily activities. However then I walk up a flight of stairs and it knocks me flat on my back and my reality sets in. My mind begins racing and I wonder how did I get here? This was not supposed to happen to me. I was going to be different. I was going to beat this thing.

The great news is I still can. The fight is not over, yet it has only just began for me. I have a chance to take back everything Cystic Fibrosis has ever robbed from me. I can have a double lung transplant.

While a transplant is trading one set of problems for another, it will enable me to become the person I have always wanted to be. I will be able to run, climb stairs and even climb mountains if I want to! With nothing slowing me down!! This will be my second chance at a life I have never truly had a chance to live!!

My team feel as if I am ready for the evaluation. For five years now I have been holding them off, however my body is telling me now is the time. I may not be listed right away because they still believe I may be a bit premature with my health. They feel I still have some time with my natural lungs yet. However results of a heart test in the hospital revealed I now have mild Pulmonary Hypertension. What is happening is the pressure is building up in my heart because my lungs are working so hard to breathe. This explains my shortness of breath and need for the O2. The doctor is not concerned but feels this is a sure sign of progression of my disease.

Their main concern right now is if I were to get sick (suddenly) this upcoming winter (as in flu, etc.) and need new lungs right away. If I have not been evaluated then I can not be listed, so for extra precautionary reasons we are going ahead with the evaluation. However, my doctor did mention if for some reason I had the evaluation done and we realize I am much sicker than what we originally thought then I could be listed right away. So there is a lot of unknowns until I go to meet the transplant team. He did say that he imagines, sick this winter or not, I would be listed within the next 6 months to a year, possibly two years, depending on if my health stables off where it is now, or continues to decline.

My first step is to meet with my transplant team. That will happen this month. Then my actual evaluation will be done in September. It will consist of roughly four days that I will have to stay in a hotel in Birmingham and will have numerous tests ran each day. In short, I am not looking forward to it! I hate nothing more than being touched, poked and prodded on. You would think after all these years, it would be a walk in the park for me, but no. I don't like it now just as much as I didn't like it 15 years ago. I have never become use to being sick. It has always felt foreign to me.

Oh and side note for all my nurse friends who may be reading this I would like to add::::You know
those beautiful veins I have across my wrist, the ones I fight you guys for every time you do blood work. The ones I always insist I am saving for a rainy day??? Well guess what!?! I looked outside and it's pouring! This is just the situation I have been hoarding them for! So I am praying the lab work, because I know there is a ton of it that has to be taken during evaluation, will go a bit smoother since they will be able to use my really good veins. So I guess being stubborn will pay off somewhat. =)

So now what??? I am not really sure. I am new at this. I am still comprehending it all. I have some days
where I have peace about it, while others I cry for no reason at all, and at the oddest times. I can tell you this, my daughter has never looked as beautiful as she does now, my husband has never smelled as sweet and food has never tasted as good! I tell everyone I love them to the point I know they think I am crazy. Not because I think I am dying, but rather because I know we should say it more often, simply smother ourselves with the ones we love, for all we have in this life is each other.

The most important variable in all of this is GOD. He has His hand all over this. I know when He created my donor's lungs He knew one day they would find a home inside my chest, so He made them perfect, not only for the life they would live with my donor, but also for the life they would GIVE to me!

A lot of things I still can't wrap my mind around. Like what it will feel like carrying a pager, waiting for it to go off to let me know my new lungs are ready. Or my donor, who I am already deeply saddened to know the life they will lose so I can gain mine. Or how about the mind blowing fact that I will lay on an operating table while my disease is pulled from my body once and for all and replaced with the sweet miracle of life. I have been blessed to only have CF destroy my lungs. I have never had the additional problems other CF patients have. Recently a finding of my genotypes gave us a better understanding as to why I was born with it only in my lungs. So for me I will no longer have Cystic Fibrosis. That sentence is powerful.

It is all so overwhelming and I know there will be good days and bad days. My doctor has warned me that I will be much sicker than even this when my new lungs come. I simply can't imagine declining any further, but I suppose that is the way it happens. I do have dark times ahead of me but I am clinging to my Savior and I trust He will lead me into victory and glory for His name.

Everyone keeps asking what can they do for me now?? You may find yourself even as you read this asking yourself the same question. The truth is as far as this disease goes, this walk is between God and I. No one can take this from me, no one can make it better, no one can roll into the operating room for me. I have to do it. God will be and is with me. That I am certain of. So I will not be alone. What you CAN do are two things:::::: First, PRAY PRAY PRAY!!!!! Pray over me, pray over my family, pray over my doctors, pray over my donor and pray over my donor's family as well. I believe in prayer.

The second one is simple, just love me. Love me and let me love you. There is no medicine that can heal like love and right now I need not only to receive it but to give it as well.

As of now, I believe today is good, and tomorrow will be better. The battle will rage on and once again I will drop to my knees in deepest appreciation to my God that I am still here, breathing and living, one day at a time. That I too, get another day, another hour, another moment, another breath........

and simply........another chance.

Peace and Love, always Peace and Love.
I love each and every one of you forever.


"Even when life is bad, I can't complain because even then......I am still breathing."
-Summer Welch


Photography by Rtistic Images

The Phoenix

The Phoenix

Do not be fooled by these devices I am tied to.

Do not be deceived by this monster that lives inside my chest.

For I am a phoenix.

And when you least expect it.

I will rise up from the ashes.

-Summer Welch 

*Photography by RTistic Images 

Real

Have you ever seen the childrens movie Coraline? Do you remember the part where as she walks deeper into the magical world it slowly starts to unravel? That is what happened to me today. As I entered my Starbucks, located here in the hospital, I had an instant feeling something was amiss. It no longer appeared to me as a safe haven that I can escape to when being sick becomes too real. The lights didn't glow like embers, the people didn't seem as warm, and the big purple arm chair sat rather lumpy. As I sat there I realized it was only an overpriced coffee shop in a hospital. It no longer brought fond memories of home. It was sterile, it was ugly, it was simply just another part of this building. I am not sure why I felt this way. It was a bit overcrowded today. I did feel uneasy sitting around so many people. After all I have been here 24 days today, that is almost a month. A whole month that I have had limited human contact. But all the same the visit just did not sit well with me. I noticed nearly everyone had some sort of technical device that they were tied to. Whether it be sitting in front of them, or clenched in their hand as they talked to a dear friend or colleague.

One couple sat at a table for two. They were in their late forties, married, and not once spoke to each other. He sat carefully turning the pages of his newspaper as she starred blankly into her laptop. Everyone was so disconnected. I suddenly realized I don't want to be that way. I don't want the keys on my keyboard to be more familiar than my husbands hands. I don't want the glow of my screen to be warmer than my daughter's smile. I want to live. I want to experience life. Everything here is so sterile. I am afraid I have been here too long. Tomorrow I get to return to my home, my safe haven, my family, my friends, my church and my life. I will be returning not the way I came. I am different now. I am no longer disconnected.  I have a burning desire to chase after my God with every part of my being. I only thought I knew what that was before now.....but I didn't.

My hope is in returning home I will be able to let my mind comprehend what my body is doing. As well as let my body comprehend what my spirit is doing and what my God has plans to do. Things are big right now. Everything is big. This is life and it is real. This is not someone else's story. It is mine. My story that will not be left untold. God is the author and I will spend each day patiently waiting with passion to turn the page to the next chapter. I know I am not, but as I sit here and  weep with overwhelming emotion I say, I know the great I Am.

~Love~

Processing

The doctor finally came. I am still processing a lot of the information. I do get to go home Friday! Home makes me feel whole again. Not to mention sleeping in my own bed. I just need familiar surroundings, people that love me and laughter, which will forever be the best medicine of all.

Once I have processed enough, I will write again. Maybe soon.

As for now, I will leave you with this. These are my plans for today, to simply put one foot in front of the other, and move forward.



And you-what of your rushed and useful life?
Imagine setting it all down
-papers, plans, appointments, everything-
leaving only a note:
"Gone to the fields to be lovely.
Be back when I'm through with blooming."
-Lynn Ungar

~Love and two fingers from a Grateful Spirit.~

Waiting

22 days and counting.

Still waiting on my doctor to come see me.


I will post an update as soon as I have one.

Peace, Love and all of that Hippie Jive =)

Starbucks and Steroids

Once again the doorway to Starbucks proved to be a portal into a magical land. I know it seems radical as I speak of it however you must understand and see from my eyes. Hospitals are so sterile. They are filled with sorrow, strange noises and smells. For me Starbucks is a staple. While it is a socialized staple and we all know how much I hate that, I still can't help myself getting swept away as I fall into the purple velvet chair in the corner with my warm cup of coffee. I let the world fall away and for just a moment I am not sick. I am not tied to oxygen. I am free. I am young, 27 years to be exact and have so much life ahead of me. For a moment I am an old soul with hopes and dreams and a chance to embrace each and every one of them.

My visit today was as always, satisfying. The register boy looked at my shirt and smiled. He looked at me and said, "Abbie Hoffman". I smiled back and said, "Yes". Small interactions make my soul well. So thank you Register Boy. You made my day by recognizing Abbie Hoffman. But more than that thank you for looking past the plastic strapped to my face. For not asking questions or giving unruly stares, but rather instead for treating me like a person, a real live breathing person. That made me feel beautiful and it made you beautiful too.

A rather large gentleman walked in, shabbily dressed. I watched him as he wiped the sweat from his brow. He paced back and fourth to the counter. He never placed an order. I noticed as he turned to walk away that he had cut the heels out of his shoes. He was wearing mens dress shoes that laced in the front, the color was black. You could tell they were seconds however he had shined them up nice. My heart fell out of my chest and into the floor as I watched him stride out of the coffee shop. He had cut out the heels simply because they didn't fit. He was doing the best with what he had. He suddenly became my hero. I wanted to wrap my arms around him. To take his worries away. To give him hope. I know if I live to be a hundred I will never forget him and in that moment that my heart broke. My situation turned to a puddle in the floor. All of a sudden it wasn't about me anymore. It wasn't about the demons I am facing. It was something much bigger. Bigger than me. So I prayed to God. He usually handles the big things....while I just sweat the small things. That is why I am not but I know I Am. =)


After he left I began to observe others shoes. I found myself surrounded by mostly doctors at this point. It was amusing for a brief second. Then I felt like they were invading my sacred space. A space I have made just for myself. A space I can pretend all is well. I decided then and there they should have a new policy....NO WHITE COATS ALLOWED. It isn't like I am denying them their cup of joe, just take off the coat, slouch a little, dig your feet in the ground and be human for a moment. Of  course their shoes were all bright, shiny and new. I don't know a whole lot about mens shoes however I could tell the ones they were wearing had to cost a lot. Then I imagined that they had many more pairs just the same sitting at home in their closets. It made me sad to think of the man who had a pair too small to fit and then those who had more than enough. I suppose that is the law of life. Even in all of its infinite beauty it still remains unfair.

I noticed the doctor with the shiniest shoes of all could not stop starring at me as he made his way to the end of the counter to get his cup of gladness. He peered at me as if I was a medical oddity. I wondered if he was trying to guess my disease, sizing me up as he was. Then I realized I was playing too much into the scene, giving him too much credit. His thoughts were elsewhere I am sure, maybe a loved one at home he couldn't wait to get to, or his patient that lay fighting for their lives that he so desperately wants to save. He needs to be someones hero. Sorry Mr. Nice Shoes I can't give you that badge today. I gave that away already , to the man who would love to walk a day in your shoes. I already have my own doctor anyway, while he doesn't leap from tall buildings and I have never seen a shiny red cape peeking out of his collar, his bow ties make me smile, his compassion warms my heart and his honesty earns my respect. So I guess on some days his mind may wonder to me as I lay fighting for my life that he desperately wants to save. That doesn't make him my hero, that makes him my safe place. These days those are hard to come by and their worth is more than an unnamed hero.

Through the doors strides a girl, late twenties. She has on ordinary city street attire, bag slung over her shoulder. I can't help but notice her height. She is such an average height, not too tall, not too short. Maybe I would like being that way too. It does seem as if I am getting shorter these days. Am I shrinking? Or is just the world growing? Either way it makes me feel so small apart of something so big. Alas, this is life, dear friend. I suppose God saw fit for you to be your way and for me to be mine. Even the scar on my lip had a purpose. He knew the confidence it would instill into the very being of who I am. It is so odd to be surrounded by so many unhappy people, vain people. Always wanting the right clothes, shoes, hair. My scar is symbolic. It is the un ordinary in an ordinary world. It is me and I wouldn't have it...any....other....way. =)


My favorite part is when the children are cued into the scene. They are so innocent, healthy, and pure. They stare at me, not like I am a medical oddity, but rather with question. The best part about children is they don't just stare, they ask. What is that? Why do you have that? Adults only stare when you aren't looking. They stare with judging eyes. They assume. It makes me recall a music teacher I had in high school. On the first day of class I began to have an uncontrollable coughing fit while roll was being called. He paused, looked up and said, "Why don't you light up another cigarette?". He assumed something about me. That was a terribly embarrassing day for me. Two weeks later I became ill and had to be hospitalized. He asked one of my friends why I hadn't been attending class. Imagine the horror as he came to learn I had an incurable terminal lung disease. When I returned to school he pulled me aside after class one day and apologized. I accepted however it would have been nice if he would have offered it in front of the class since that is where he chose to single me out and humiliate me because of the monster living in my chest that I had been fighting off since birth. I have never forgotten that day and sometimes I wonder if he still assumes things about others or if he takes a child's stance and asks questions first. Questions are wonderful. What are we without knowledge?? Never be afraid to ask.

I have countless memories just like this. Memories of girls taunting and teasing me for coughing. Telling everyone around me that I wasn't truly sick and that I was "faking" it. How sad I feel when I reflect on these experiences, not for me, however for them. I think of how lives could have been changed if they would have just asked. I would have been willing to share. I suppose that is just what comes from being a teenager. We all thought the world revolved around us at some point. Ha Imagine our shock when we realized the earth circled the sun and our lives were so tiny, so small, like specks of dust. Being an old soul I learned this lesson long before my peers, which had its advantages and disadvantages. I can say now, at the age of 27, I am blessed beyond measure. Blessed to have encountered some of the most breathtakingly beautiful souls in this life of mine. Whether it be lifetime friendships or just passing moments, child hood friends or magical souls in a hospital Starbucks who remind me of what it is to be humble, thankful for the skin I have, the life I DO have. They are all a part of me. Even the ones I pass on the street, the nine to five in her heels on her cell phone trying to make something in this world, the homeless man who just wants spare change so he can once again choose between a warm meal or a steady drug to get him through the day. Each one of them I take something from, a lesson, a moment. Beautiful, precious moments. How can our hearts not swell when we stop....and look around? Life is happening all around us, beautiful precious life. What a wonder to be a part of this, this second, this minute, this moment. Moments rushing with urgency. It is like I am standing with my eyes closed in the middle of one of these city streets inside of a vibrant water color that would even give Picasso a run for his money. The smells, the textures, the tastes. This is LIFE! Don't let another second go by without truly experiencing it. It doesn't have to be big to change your life. Sometimes if you will just be still, tell your soul to be quiet and open your heart, you would not believe the love that will pour into you from the people around you, in simple situations. My prayer today dear friend, is as you read this, you will love deeper than ever, allowing your senses to take you to immeasurable heights, soak it in, not miss a second, and to throw yourself at the feet of your King. Cling to Him, turn to Him. Know today that you dear friend like me, know I am not but with every part of my being find peace that I know I Am.

Love to you all, today and forever.

Love. Love. Love.

"Everything Rides on Hope Now"

It seems like when I find my comfort, my little spot in the world, that everything turns upside down. It is like the earth shifts beneath my feet and before I know it I am lying on my back starring at the clouds passing me by. It feels like everyone around me is moving in slow motion. It feels like I am in some horrible nightmare and I can't wake up. I am beyond confused and the decisions are coming quickly....too quickly. It is not what I am comfortable with. Trying to clear my head in a hospital room while the rest of the world sleeps  in their warm beds breathing with their sweet lungs that hide safely under their ribs. The things that are so precious to me, that are life giving, others are walking around and not even realizing what it is they truly have. My mind races away with me and before I know it I am on top of a mountain surrounded by beautiful blankets of snow. The air fogs in front of my face as my warm breath escapes my lips. A mountain I climbed with my own two legs, my body, my healthy body and my strong lungs. My beautiful precious lungs. A gift. A true gift. Then a knock at the door and I am quickly ripped back into my reality, sitting in my hospital room with my oxygen tied to my face, because it is that time again. That time to sleep, the time I dread the most because it is then I surrender to this device and allow fake air to be pumped into my body. I hate the oxygen. I despise it. I see it as a weakness. I wish I didn't. I wish I could embrace it, however I just can't. It ties me to this disease and I hate that. I am such a free spirit. I need room to run and to stretch. I have one question yet I am getting what seems like a dozen different answers. All from respectable and intelligent people. Some days I feel like I am holding off a pack of wolves. I feel as if I am an experiment and they are just ready to ravage what is left of me at any second. Yet other days, the good days, I look at my doctor and my team and my heart literally swells because I feel so loved, so cared about, so safe. My doctor is human. He can make mistakes, but in my eyes, he is absolute genius. I know that may sound over the top but isn't that how we need to feel about our doctors. If not then we need to find a new one. I want to trust him with my life, with my future, knowing every decision is made just as if he is making them for his own daughters. It is a feeling of peace to have that. To know that he and many others are in my corner pulling for me. To see me live the best life I can. I don't know what is going to happen. These days I just take one at a time. I don't know if I am going to be faced with decisions that will send me to the brink of insanity and back again. I can't control everything, even if I would like to. But what I do know is CF may have my body, but it will never take my spirit. Not today, not tomorrow, not ever. My spirit is mine and it is precious. It may feel like I am walking through hell, but I refuse to not keep a smile on my face and my head held up. Even through the pain and sorrow of it all. It may be a tragedy to some, but for me it is beautiful. It is life. It is my life and I intend on living it.