I have been absent online however not absent in my writing. I have many things I am intending on posting in the near future. I thought I would post this now, since it has been so long since I have added an entry. I am upset with myself for not dating this. I believe it was written during early November of this year. I wrote it while having lunch by myself at Panera Bread.
Too tired to return to my car. Nostalgic. Missing simple times. Being ten years old, sitting in my grandmother's kitchen. When hand written letters were delivered with a stamp and by real people. Before I knew of such things as war. Believing that playing outside with my cousins, Josh and Seth, justified all reasoning for why I existed. Watching the sun stretch her beautiful arms over the fields behind my house while softly kissing my nose and leaving golden freckles as proof, her fingerprint, that she had once been there. That I too, was once young and happy, and most of all, healthy. A time when worries flew past me and cares swam over my head. Remembering the smell of fresh hay at the barn. The way I tropped through the mud behind my father across the ground, my three steps to keep up with his one. The excitement over a new pencil box and crayons for school. These are the things my dreams are made of as I sit here in a Panera Bread on a Wednesday afternoon. These words are peaceful and real. Almost as if being spoken by a voice over at the end of a movie, a fairy tale even, where I ride off into the sunset blessed to know that I too, was once young and happy and most of all, healthy.
Wednesday, December 29, 2010
Thursday, October 14, 2010
Heart Cath
I was admitted on Monday to the hospital. That was also the first scheduled day of my evaluation. Evaluation had to be canceled since I was sick and really needed a round of antibiotics. However they are able to perform many if not all of the tests for evaluation while I am in the hospital. That really gives me a sense of comfort. I like the idea of being in a familiar setting with my nurses and doctors while I have some of these procedures performed. Yesterday was the first invasive procedure I have had, a heart cath, it was not exactly a walk in the park.
The day went all wrong straight from the beginning. I had been placed NPO at midnight which basically means I can't have anything to eat or drink. I was told the procedure would take place around 7 am. However 7 came and 7 went, no sign of anyone. So around 10 am my nurse tells me that the test is going to take place around noon. Guess what?? Noon came and noon went, again no one comes for me. By this point I was beginning to become weak. The antibiotics take such a toll on my body and it doesn't take much for me to feel really lousy. I usually snack on fresh fruit through out the day and drink tons of water. I never realized how much my sick body depends on those things until I could no longer have them. Several other things occurred as well that I am not going to discuss here, but to say I was upset is an understatement. Finally at 3:00 pm they showed to pick me up.
They took me down to the cardio/vascular holding area and hooked me up to several monitors. I basically just sat there while they entered all of my information into the computer. Around 5:00 the doctor who would be performing the procedure came to see me. He was a short man with thick lens glasses that framed his eyes. He was a bit quirky and sounded like the character Napoleon Dynamite when he spoke. I asked him exactly what the procedure entailed. He began explaining to me that I was not having the normal heart cath that most patients have to check for blockage, rather a right heart cath to measure the pressure in my lungs. He wanted to go in my neck instead of my groin area however my port is placed in the exact location he was hoping to use. So he looked at the other side of my neck, hoping to use it and continued explaining to me what would take place. He said he would snake the catheter into a large vein next to my artery and wind it around my lungs and back up to my heart. Then he would go through a series of methods that would help determine exactly how much pressure I was holding inside my heart. I was completely calm and peaceful during the beginning of his explanation, because I was previously informed it would be going to my heart. I was actually even a bit relieved to discover he was NOT going into my main artery like I had been told upstairs. So all of this sounded like good news to me. However, when he mentioned snaking it through the blood vessels in my lungs, I began to panic. That was information I had not been given, therefore not allowed to process ahead of time. The tears came instantly. I knew my lungs are very fragile because of the steady decline I have experienced with my health over this past year. The first thing that came to mind was collapsing a lung. So I asked and did not get the answer I was hoping for. He said yes there were risks of not only collapsing the lung but also puncturing it. My mind began to swirl and I instantly became dizzy. I am not sure if it was because of the information I was being given, the fact I had not eaten in almost 24 hours or a combination of both. Regardless, I was at a breaking point. I thought I was going to scream. He tried to talk to me calmly and quickly realized I could not calm down. He said I would have no more than 15 minutes to decide if I wanted to continue or reschedule. Several verses came to mind while all of this was happening, first "Cast all your anxieties on Him", and "God did not give me a spirit of fear, but of peace and a sound mind". I just kept repeating these over in my head as I concentrated on breathing and thinking of the benefit of this test. It would get me one step closer to a life free of tubes. Tubes. Tubes for treatments, tubes for medications, tubes for oxygen. They are everywhere and I despise them. God did not create me to be tied down. The more I thought about how much I wanted to throw away every tube in my house, never drag an iv pole down the hall, or an O2 tank to the grocery store again, the more determined I became to do whatever it takes to get the life I dream of having.
So, I wiped my eyes with a tissue, swept my hair out of my face, sat up a bit taller than before, and said, "Let's get this done." With that the doctor handed my chart to the nurse and the next thing I know I am being wheeled into the operating room. So many thoughts were racing through my mind. I began imagining what it is going to feel like one day to be rolled into an even bigger operating room, knowing my disease is going to be cut from my body. Knowing that somewhere a stranger is going to give me a gift so precious that I can not even fathom. It was so overwhelming.
The room was a standard procedure room. Not too big, not too small. I crawled over onto the long steel table and the doctor and his team entered a small room next to the room we were in. I am not sure if they were getting dressed or just discussing how crazy they thought I was, ha, but either way I know they were out of the room for no more than a minute or two. I am such an observer and I immediately began looking around the room, trying to see if I could guess what instruments would be used and what their purpose might be. My fear was beginning to fade. And even though the room was silent, it was loud, as if there were an entire congregation of people in there with me, all wearing watches that were simultaneously beeping. =) I knew as I felt myself melt into the cold metal of the table while I took deep breaths of oxygen through the tube against my nose that simply, God was with me. He was there, in that moment, in that room.
The whole procedure lasted about 30 minutes, 15 minutes of that being prep time. We did decide to enter through the groin area. The doctor said there was about a 0% chance of collapsing a lung that way. I didn't feel anything other than maybe some small flutters around the spot he entered. I got three numbing shots and literally could not feel half way down my thigh, so he did a really great job to make sure I was comfortable. I did ask a lot of questions. I wanted to know what tools were used for what. Not out of anxiety but rather curiosity. I do find it all fascinating. The human body never fails to impress me. When you begin to learn about it, you realize there is absolutely no way we evolved, but were rather created. It is just so amazing the way it all works together. You realize God truly does have a plan for it all.
Love you guys!!!
P.S. My results came back and I have MILD pressure in my heart, even more mild than what they originally thought. They said it was no more than what would be expected with someone with Cystic Fibrosis! So that is great news!!! =)
The day went all wrong straight from the beginning. I had been placed NPO at midnight which basically means I can't have anything to eat or drink. I was told the procedure would take place around 7 am. However 7 came and 7 went, no sign of anyone. So around 10 am my nurse tells me that the test is going to take place around noon. Guess what?? Noon came and noon went, again no one comes for me. By this point I was beginning to become weak. The antibiotics take such a toll on my body and it doesn't take much for me to feel really lousy. I usually snack on fresh fruit through out the day and drink tons of water. I never realized how much my sick body depends on those things until I could no longer have them. Several other things occurred as well that I am not going to discuss here, but to say I was upset is an understatement. Finally at 3:00 pm they showed to pick me up.
They took me down to the cardio/vascular holding area and hooked me up to several monitors. I basically just sat there while they entered all of my information into the computer. Around 5:00 the doctor who would be performing the procedure came to see me. He was a short man with thick lens glasses that framed his eyes. He was a bit quirky and sounded like the character Napoleon Dynamite when he spoke. I asked him exactly what the procedure entailed. He began explaining to me that I was not having the normal heart cath that most patients have to check for blockage, rather a right heart cath to measure the pressure in my lungs. He wanted to go in my neck instead of my groin area however my port is placed in the exact location he was hoping to use. So he looked at the other side of my neck, hoping to use it and continued explaining to me what would take place. He said he would snake the catheter into a large vein next to my artery and wind it around my lungs and back up to my heart. Then he would go through a series of methods that would help determine exactly how much pressure I was holding inside my heart. I was completely calm and peaceful during the beginning of his explanation, because I was previously informed it would be going to my heart. I was actually even a bit relieved to discover he was NOT going into my main artery like I had been told upstairs. So all of this sounded like good news to me. However, when he mentioned snaking it through the blood vessels in my lungs, I began to panic. That was information I had not been given, therefore not allowed to process ahead of time. The tears came instantly. I knew my lungs are very fragile because of the steady decline I have experienced with my health over this past year. The first thing that came to mind was collapsing a lung. So I asked and did not get the answer I was hoping for. He said yes there were risks of not only collapsing the lung but also puncturing it. My mind began to swirl and I instantly became dizzy. I am not sure if it was because of the information I was being given, the fact I had not eaten in almost 24 hours or a combination of both. Regardless, I was at a breaking point. I thought I was going to scream. He tried to talk to me calmly and quickly realized I could not calm down. He said I would have no more than 15 minutes to decide if I wanted to continue or reschedule. Several verses came to mind while all of this was happening, first "Cast all your anxieties on Him", and "God did not give me a spirit of fear, but of peace and a sound mind". I just kept repeating these over in my head as I concentrated on breathing and thinking of the benefit of this test. It would get me one step closer to a life free of tubes. Tubes. Tubes for treatments, tubes for medications, tubes for oxygen. They are everywhere and I despise them. God did not create me to be tied down. The more I thought about how much I wanted to throw away every tube in my house, never drag an iv pole down the hall, or an O2 tank to the grocery store again, the more determined I became to do whatever it takes to get the life I dream of having.
So, I wiped my eyes with a tissue, swept my hair out of my face, sat up a bit taller than before, and said, "Let's get this done." With that the doctor handed my chart to the nurse and the next thing I know I am being wheeled into the operating room. So many thoughts were racing through my mind. I began imagining what it is going to feel like one day to be rolled into an even bigger operating room, knowing my disease is going to be cut from my body. Knowing that somewhere a stranger is going to give me a gift so precious that I can not even fathom. It was so overwhelming.
The room was a standard procedure room. Not too big, not too small. I crawled over onto the long steel table and the doctor and his team entered a small room next to the room we were in. I am not sure if they were getting dressed or just discussing how crazy they thought I was, ha, but either way I know they were out of the room for no more than a minute or two. I am such an observer and I immediately began looking around the room, trying to see if I could guess what instruments would be used and what their purpose might be. My fear was beginning to fade. And even though the room was silent, it was loud, as if there were an entire congregation of people in there with me, all wearing watches that were simultaneously beeping. =) I knew as I felt myself melt into the cold metal of the table while I took deep breaths of oxygen through the tube against my nose that simply, God was with me. He was there, in that moment, in that room.
The whole procedure lasted about 30 minutes, 15 minutes of that being prep time. We did decide to enter through the groin area. The doctor said there was about a 0% chance of collapsing a lung that way. I didn't feel anything other than maybe some small flutters around the spot he entered. I got three numbing shots and literally could not feel half way down my thigh, so he did a really great job to make sure I was comfortable. I did ask a lot of questions. I wanted to know what tools were used for what. Not out of anxiety but rather curiosity. I do find it all fascinating. The human body never fails to impress me. When you begin to learn about it, you realize there is absolutely no way we evolved, but were rather created. It is just so amazing the way it all works together. You realize God truly does have a plan for it all.
Love you guys!!!
P.S. My results came back and I have MILD pressure in my heart, even more mild than what they originally thought. They said it was no more than what would be expected with someone with Cystic Fibrosis! So that is great news!!! =)
Friday, September 24, 2010
The First Appointment
Well the bad news is I have neglected this blog, however the good news is I have NOT neglected anything else in the process. Since the start of all the transplant hassle I have been focusing more on my family, friends, remaining healthy as possible and well just living in general. So I have not been able to spend as much time writing as I would like, but this was a choice I made. It wasn't like I let the time slip away from me. Actually it is the right opposite. I have grabbed on to time with both hands and am refusing to let go. So anyway with all of that being said I guess I need to give an update!
As most of you know by now I had my first transplant clinic appointment. This was basically a "meet and greet". We chose to stay in a hotel over night for this visit since we had to be at the clinic by 7:30 that morning. I had received my schedule by mail the prior week. So I was pretty informed as to what my visit was going to be like. So at 7:30 I had to be at the lab. My mom met us there since she didn't want to stay at the hotel. They were super nice. I have had labs drawn there before but it has been several years. I am a really hard stick and I had been drowning myself in water since around 5 am when I woke up and also the few days prior. I wanted to be really good and hydrated. I was explaining to the lab tech how hard of a stick I am when she told me to calm down and quit being wild. Ha Ha It was funny. Sam and I both looked at each other and laughed. So she stuck me once and got the blood! So happy about that! That was what I was worried about the most! I didn't want to be stuck a lot and be late for my next appointment. I was so thrilled I nearly jumped out of my chair! The only labs they needed were basic ones, like they would take during a hospital admission, so it was pretty simple.
Then I had to be at xray at 8:00. Xray is so easy but soooo annoying. I know I am complaining over something little but seriously I HATE having to get undressed just for a thirty second procedure. I was also having to wrestle with my O2 tubing. We had my travel tanks that day which made it fairly easy. I was surprised at how easy I could walk around with no help at all. But I was VERY tired by the end of my final appointment.
Next, was my PFTs. I mean that test does not even phase me anymore. Since me and my doctor talked about transplant and it is here now and happening, those numbers mean nothing to me. Don't get me wrong, I don't want to see them drop any but the anxiety that use to come with that test is GONE! I actually laughed when my numbers came on the screen. I blew three times as hard as I could and the tech asked if I wanted to try again. Sam and I laughed. I looked at her and said, "I am here for transplant clinic." No need to stress about them anymore. Of course I would love to have an FEV1 of about 70, ha even 40 would be nice, but these numbers no longer tie me down. There is a freedom in this for me. Of course I wish it wasn't time for transplant, but there is also this relief I feel. Like help is on the way almost.
Anyway, no time to be deep and significant, time for details now, deep can be later. Then we went to the actual appointment. It was scheduled for 9 that morning and I was right on time! I felt really great about that. I wanted to really show the doctors I could pull my own weight and am responsible. Being on time is everything. I felt like I was walking into the most important job interview ever. Ha. So I get there and everyone, I mean EVERYONE was extremely nice!! They were so upbeat and positive, not at all what I was expecting it to be like. I just assumed it would be almost like a funeral, but it wasn't! They are not in the death business, although it does happen from time to time, they are in the giving life business. When I walked back to the room they were putting me in, there was this old man in a wheelchair with O2 and a mask on (to protect from germs) just like me. When I walked past him, his eyes opened wide, he pointed at me and looked at his wife and said, "She's just a baby." Oh man, that nearly broke my heart. I was doing so well. But when he said that I felt my heart twitch a little for sure. I just wanted to tell him that I was strong and I was going to be alright. It was just so sweet, it was like he was concerned for me. You don't meet strangers who are concerned for you anymore, it is a rare happening. It was really great. It meant a lot to me.
First a doctor came in, he wasn't a student I don't think, but he wasn't exactly on the transplant team either. His name was Jason and he was really nice. He asked a lot of questions. When he went out of the room I began to stick my head outside into the hallway and noticed the two doctors I am familiar with that take care of me in the CF clinic and who are also on the transplant team were no where to be seen. I did begin to panic a little. I asked a nurse who was walking by where they were. She informed me they were not there that day. I was a little disappointed. I had hoped seeing familiar faces would make it not so scary. However once the transplant doctor who was there came in and introduced himself I was comfortable instantly. He was very personal and had a great "bedside manner". He laughed a little which eased up the mood for sure. He basically just said I did need the evaluation. He asked me if I had any questions. Of course the one question I instantly asked was about the heart cath. I am nervous about it. He was so honest with me, and he has no idea how much I appreciate that! He didn't make it out to be a bad situation, but did warn of the risks as well. I felt really confident after talking to him about it. I mean the way I look at it is if I can't make it through a heart cath, then I really can't make it through a transplant. So there is no reason to worry about it. It is just part of the evaluation and it has to be done. I brought in a three ring binder with ALL of my medical records I have been collecting over the years. They are even organized under tabs. Ha. I had a fresh new tab for transplant. I was so proud of myself. I really wanted to show that I am worth this. This is a huge shot, a chance these guys will be giving me. They have to trust that I am willing to do my part and take care of these new lungs once I get them. I want to prove to them I can be trusted, that I will literally guard them with my life, and never take it for granted. Maybe it appeared that way. I hope so.
Then I met with a transplant coordinator, not mine because she was busy but a different one. They will be giving me visits from now on when I am in the hospital, not for my care but rather social visits, which is so awesome!! I am really excited about my new team caring enough to come around when they don't have to. So that was that. We left around 10:00. Really short and to the point. They did say I needed a letter from my dentist saying I have good oral health as well as my gynecologist. Fun stuff. The greatest part is I didn't break down, not even once. I wasn't a babbling idiot like I thought I would be. My doctor put me on anxiety meds when I came home from the hospital and after about a week I ditched them. I was really starting to wonder if that was the best thing to do but you know, I have been praying intensely and it is like it is gone. Whatever "it" was that was causing me to worry all the time has left. I have a peace that is hovering around me. Sam can feel it too. God has this taken care of. I am actually kind of excited. Not saying I am completely fearless now, because I am not. I am still human, and I still have moments when my daughter hugs me and I don't want to let go, or my husband is telling me bye and I can't quit saying I love you. But you know it's a gift. I met with my pastor about two weeks ago because I was so depressed and about to lose my mind. He told me this was a gift. How lucky am I that I get a chance to get everything in order? To call long lost friends? To make amends? To heal relationships? Some people die instantly, never knowing it is coming and they don't get the chance to write their daughter letters for the future and tell those around them how much they mean to them. I do, I get that chance. Another point my pastor helped with were the WHAT IFS. There are so many of them. He said from now on, answer them, then they will go away. So I did. I started answering the, What if I don't make it? What if the lungs don't work? What if, what if what if. Once I answered them, that was it. It took the fear away.
So today I am at peace. My evaluation is scheduled on Oct 11, 12, 13 and the 19th and 20th. My heart cath will be done on the 13th and my TB test results that day. That is it for the 13th. They scheduled the cath on a day by itself for me. That made me feel a lot better. I just know I am not going to feel like running around afterward.
Please be praying for me, for us, for this whole situation. Now I have to go pick up my purpose, she just got out of school! Love you all!!
As most of you know by now I had my first transplant clinic appointment. This was basically a "meet and greet". We chose to stay in a hotel over night for this visit since we had to be at the clinic by 7:30 that morning. I had received my schedule by mail the prior week. So I was pretty informed as to what my visit was going to be like. So at 7:30 I had to be at the lab. My mom met us there since she didn't want to stay at the hotel. They were super nice. I have had labs drawn there before but it has been several years. I am a really hard stick and I had been drowning myself in water since around 5 am when I woke up and also the few days prior. I wanted to be really good and hydrated. I was explaining to the lab tech how hard of a stick I am when she told me to calm down and quit being wild. Ha Ha It was funny. Sam and I both looked at each other and laughed. So she stuck me once and got the blood! So happy about that! That was what I was worried about the most! I didn't want to be stuck a lot and be late for my next appointment. I was so thrilled I nearly jumped out of my chair! The only labs they needed were basic ones, like they would take during a hospital admission, so it was pretty simple.
Then I had to be at xray at 8:00. Xray is so easy but soooo annoying. I know I am complaining over something little but seriously I HATE having to get undressed just for a thirty second procedure. I was also having to wrestle with my O2 tubing. We had my travel tanks that day which made it fairly easy. I was surprised at how easy I could walk around with no help at all. But I was VERY tired by the end of my final appointment.
Next, was my PFTs. I mean that test does not even phase me anymore. Since me and my doctor talked about transplant and it is here now and happening, those numbers mean nothing to me. Don't get me wrong, I don't want to see them drop any but the anxiety that use to come with that test is GONE! I actually laughed when my numbers came on the screen. I blew three times as hard as I could and the tech asked if I wanted to try again. Sam and I laughed. I looked at her and said, "I am here for transplant clinic." No need to stress about them anymore. Of course I would love to have an FEV1 of about 70, ha even 40 would be nice, but these numbers no longer tie me down. There is a freedom in this for me. Of course I wish it wasn't time for transplant, but there is also this relief I feel. Like help is on the way almost.
Anyway, no time to be deep and significant, time for details now, deep can be later. Then we went to the actual appointment. It was scheduled for 9 that morning and I was right on time! I felt really great about that. I wanted to really show the doctors I could pull my own weight and am responsible. Being on time is everything. I felt like I was walking into the most important job interview ever. Ha. So I get there and everyone, I mean EVERYONE was extremely nice!! They were so upbeat and positive, not at all what I was expecting it to be like. I just assumed it would be almost like a funeral, but it wasn't! They are not in the death business, although it does happen from time to time, they are in the giving life business. When I walked back to the room they were putting me in, there was this old man in a wheelchair with O2 and a mask on (to protect from germs) just like me. When I walked past him, his eyes opened wide, he pointed at me and looked at his wife and said, "She's just a baby." Oh man, that nearly broke my heart. I was doing so well. But when he said that I felt my heart twitch a little for sure. I just wanted to tell him that I was strong and I was going to be alright. It was just so sweet, it was like he was concerned for me. You don't meet strangers who are concerned for you anymore, it is a rare happening. It was really great. It meant a lot to me.
First a doctor came in, he wasn't a student I don't think, but he wasn't exactly on the transplant team either. His name was Jason and he was really nice. He asked a lot of questions. When he went out of the room I began to stick my head outside into the hallway and noticed the two doctors I am familiar with that take care of me in the CF clinic and who are also on the transplant team were no where to be seen. I did begin to panic a little. I asked a nurse who was walking by where they were. She informed me they were not there that day. I was a little disappointed. I had hoped seeing familiar faces would make it not so scary. However once the transplant doctor who was there came in and introduced himself I was comfortable instantly. He was very personal and had a great "bedside manner". He laughed a little which eased up the mood for sure. He basically just said I did need the evaluation. He asked me if I had any questions. Of course the one question I instantly asked was about the heart cath. I am nervous about it. He was so honest with me, and he has no idea how much I appreciate that! He didn't make it out to be a bad situation, but did warn of the risks as well. I felt really confident after talking to him about it. I mean the way I look at it is if I can't make it through a heart cath, then I really can't make it through a transplant. So there is no reason to worry about it. It is just part of the evaluation and it has to be done. I brought in a three ring binder with ALL of my medical records I have been collecting over the years. They are even organized under tabs. Ha. I had a fresh new tab for transplant. I was so proud of myself. I really wanted to show that I am worth this. This is a huge shot, a chance these guys will be giving me. They have to trust that I am willing to do my part and take care of these new lungs once I get them. I want to prove to them I can be trusted, that I will literally guard them with my life, and never take it for granted. Maybe it appeared that way. I hope so.
Then I met with a transplant coordinator, not mine because she was busy but a different one. They will be giving me visits from now on when I am in the hospital, not for my care but rather social visits, which is so awesome!! I am really excited about my new team caring enough to come around when they don't have to. So that was that. We left around 10:00. Really short and to the point. They did say I needed a letter from my dentist saying I have good oral health as well as my gynecologist. Fun stuff. The greatest part is I didn't break down, not even once. I wasn't a babbling idiot like I thought I would be. My doctor put me on anxiety meds when I came home from the hospital and after about a week I ditched them. I was really starting to wonder if that was the best thing to do but you know, I have been praying intensely and it is like it is gone. Whatever "it" was that was causing me to worry all the time has left. I have a peace that is hovering around me. Sam can feel it too. God has this taken care of. I am actually kind of excited. Not saying I am completely fearless now, because I am not. I am still human, and I still have moments when my daughter hugs me and I don't want to let go, or my husband is telling me bye and I can't quit saying I love you. But you know it's a gift. I met with my pastor about two weeks ago because I was so depressed and about to lose my mind. He told me this was a gift. How lucky am I that I get a chance to get everything in order? To call long lost friends? To make amends? To heal relationships? Some people die instantly, never knowing it is coming and they don't get the chance to write their daughter letters for the future and tell those around them how much they mean to them. I do, I get that chance. Another point my pastor helped with were the WHAT IFS. There are so many of them. He said from now on, answer them, then they will go away. So I did. I started answering the, What if I don't make it? What if the lungs don't work? What if, what if what if. Once I answered them, that was it. It took the fear away.
So today I am at peace. My evaluation is scheduled on Oct 11, 12, 13 and the 19th and 20th. My heart cath will be done on the 13th and my TB test results that day. That is it for the 13th. They scheduled the cath on a day by itself for me. That made me feel a lot better. I just know I am not going to feel like running around afterward.
Please be praying for me, for us, for this whole situation. Now I have to go pick up my purpose, she just got out of school! Love you all!!
Monday, September 6, 2010
These Moments
sick.
In this moment, I am a wife.
I can do all things through Christ who strengthens me.
Philippians 4:13
Friday, August 20, 2010
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
Saturday, August 14, 2010
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
Thursday, August 12, 2010
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~
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~
Wednesday, August 11, 2010
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.~
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.~
Tuesday, August 10, 2010
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 =)
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 =)
Thursday, August 5, 2010
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.
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.
Wednesday, August 4, 2010
"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.
Friday, July 30, 2010
My Chair
Looking from the front it sets on the first row to the right. It may seem ordinary to you. I am for sure it goes unnoticed by others. However for me I am tied to it. It is symbolic. It is my healthy day, a burst of fresh air, a smile from a friend, tears for my savior, my chance to belong, my sanctuary. I think about it every day of the week. It never leaves my thoughts. It reminds me of a better tomorrow. It gives me hope for the future. It makes me feel strong when I am weak. From it I have seen and heard messages delivered from God. When it is empty I am sad and when it is full 'my cup runneth over'. I am blessed to have it. Blessed to use it. Blessed to experience it. From it 'mine eyes have seen the glory' and I have found 'amazing grace'. It is my refuge. My place to turn. It is where God speaks volumes to my heart. It is my something to look forward to. My soft place to land. It is my time for peace. It is my certainty in a world of uncertainties. My longing for understanding. It is my safe haven, a place to hide while being revealed. It is my chance to be well.
It is...........my chair.
*Written about my seat at church.
It is...........my chair.
*Written about my seat at church.
Tuesday, May 4, 2010
Moments
Minutes turned into hours. Hours into days. Days into weeks. Each moment, each second I become more grateful that I am alive.
Urgent. There is such an urgency now. An urgency to breathe, to live, to laugh, to love. Catching my breath after minutes turned into hours. Hours into days. Days into weeks. Not being just another number, but rather a person. Having nurses and doctors who stepped up and beyond when things got tough. Having a doctor who reminds me of my faith when I can't find the air and the room is spinning. My heart coming through my chest suddenly slows to a pace of a great athlete. Imagine. Me, a great athlete. Wanting to run, to feel my legs stretch out in front of me. Walking with no fear of falling. Late night phone calls with my pastor intensely praying over my life. Crying out to God from a hospital room. Asking and then receiving. Laying in bed on a lazy Saturday afternoon with my daughter and holding her close. Smelling of her hair and hearing her sweet laugh. Knowing there is nothing more precious in life than that moment. Those moments. These moments. Moments I still have.
Throwing my self down before my King. Bowing at awe of His majesty. Knowing the mountain will move and watching Him stretch out His hand from the heavens to push it to the side. Scooping me up along the way to carry me when I can't walk. Breathing for me. In and out. In and out. The overwhelming feeling to know my savior. To feel His undeniable love surround me and His peace to fall over me. Oh sweet Father, I am so not worthy. Your blessings fall on me in blankets. Today I weep for the love you have shown me in these weeks. Weeks that were days. Days that were hours. Hours that started as minutes. Thank you God. Thank you God. Thank you God.
Urgent. There is such an urgency now. An urgency to breathe, to live, to laugh, to love. Catching my breath after minutes turned into hours. Hours into days. Days into weeks. Not being just another number, but rather a person. Having nurses and doctors who stepped up and beyond when things got tough. Having a doctor who reminds me of my faith when I can't find the air and the room is spinning. My heart coming through my chest suddenly slows to a pace of a great athlete. Imagine. Me, a great athlete. Wanting to run, to feel my legs stretch out in front of me. Walking with no fear of falling. Late night phone calls with my pastor intensely praying over my life. Crying out to God from a hospital room. Asking and then receiving. Laying in bed on a lazy Saturday afternoon with my daughter and holding her close. Smelling of her hair and hearing her sweet laugh. Knowing there is nothing more precious in life than that moment. Those moments. These moments. Moments I still have.
Throwing my self down before my King. Bowing at awe of His majesty. Knowing the mountain will move and watching Him stretch out His hand from the heavens to push it to the side. Scooping me up along the way to carry me when I can't walk. Breathing for me. In and out. In and out. The overwhelming feeling to know my savior. To feel His undeniable love surround me and His peace to fall over me. Oh sweet Father, I am so not worthy. Your blessings fall on me in blankets. Today I weep for the love you have shown me in these weeks. Weeks that were days. Days that were hours. Hours that started as minutes. Thank you God. Thank you God. Thank you God.
Wednesday, April 28, 2010
A Good Day to Cry
Today was not a good day. Today was one of those days in the hospital when you just want to cry all day....so I did. I am not sure why I have been so sad today. I know I am on a tremendous amount of medication right now, one antibiotic included nicknamed "Mississippi Mud". Yes it is as horrible as it sounds. It takes 2 hours to run in so I can tolerate it and is delivered every 8 hours. While it is running in I experience pain almost as if a poison is being shot straight through me. The pain feels as if it is inside my bones and there is literally no way to ease it. Those hours are spent slumped over in my bed while Sam rubs my back and legs. It is literally a challenge of the fittest. I just have to endure it and move forward. Then there are the steroids........oh steroids. I have such a love hate relationship with this drug. They can give me great energy when given in small doses and actually give me a fake sense of being well for a limited amount of time. However when they are given over a lengthy amount of time and in high doses they are a nasty little drug. Side effects include but are not limited to...mood swings, swelling of the face and stomach, feelings of being disoriented and also the lovely crazy spurs of randomness that fly through your mind and make you wonder if you are in fact truly losing it.
My O2 is holding up well which means everything is going like it should. The collapsed airway has repaired itself and I am surely on my way to being well. You would think I would have had a great day with everything looking up, but I didn't. A lot of things didn't go well today. I ended up being hooked up today for 12 hours straight and now I am hooked up once again. I know it doesn't seem like much, but imagine the times you have had a cold or the flu even and the doctors have given you a strong round of oral antibiotics to take for a few days. Now multiply that by 100 and imagine taking them all day around the clock. It is tiring on your body. Anytime someone is sick and they are fighting an infection it just simply wears you out. So today even though I have only walked twice in the past six days I have felt extremely fatigued, almost as if I have been mountain climbing.
Then there is the therapy. The lovely chest therapy. I have always enjoyed my therapy because it clears my lungs so well and makes me feel so much better. However take "Mississippi Mud" coursing through your already struggling body and add your husband pounding you in the chest on top of the infected areas in your lungs for 20-30 minutes while you lay flat, sit up and hang upside down(yes I said upside down!), and you get a really uncomfortable, annoying, endless painful experience. So today I let myself cry. I really wanted to the day they loaded me up in the ambulance. I remember feeling the knot in my throat and holding it back so my mom wouldn't see me upset. I wanted to be strong for everyone. Plus I wasn't really able to cry because I was already trying to catch my breath, getting upset would have only made it worse, so I tried to be the hero, the strong one. But today I didn't. Today I put my face in my hands and let myself be sad, hurt, confused, and tired. I have had so much happen to me in the past few days and I have not even began to place it all together in my mind. I understand what has happened to me happens to other CF patients all the time. That it may even be considered a normal CF routine. But it is not my normal. Not what I am use to. I have been terrified for the past six days laying here struggling not knowing what the uncertainty of my situation was.
Most of all I didn't want to show doubt in my faith. I felt like by letting myself cry and be upset it would show weakness like I didn't trust God has His hand in this. But it is really right the opposite. Because while I sat here in my hospital bed with my O2 strapped to my face and wept it was not only because I was sad, but also because I was overwhelmed that I was still here able to sit in my hospital bed with my O2 strapped to my face to do so. This whole experience has left me feeling so unimaginably different. I have so much to feel blessed for yet I still find myself with fears. Fear of this happening again, fear of it being worse the next time. It is truly a test how strong the human spirit really is. How much I can endure.
I am proud of my fight though. I have given this 150%. Never refusing medications or treatments. Even when my breathing was at its worst and laying upside down to do my chest therapy seemed impossible because I couldn't find the air, I still did it. I withstood it all. I have made a conscious effort to cough as hard as I can as often as I can. Stopping between poundings to lean up to cough up even the most minute secretions. Feeling my ribs rattle and shake like they were about to cave in on my lungs. Wondering if my lungs were going to cave in, and pushing that fear away and coughing anyway. With no choice I feel like I slipped off a cliff and have been holding on for dear life trying so desperately to pull myself back up. I know for sure God's hand was under me as I dangled waiting to catch me if I let go. My trust in Him and His position in this has never wavered. Never more in my life have I relied on my salvation as much as I have now. There has been an indescribable peace that has surrounded me that I know God has placed in this situation simply because of all the prayers that have been sent up.
So the plan as of now, is to take it one day at a time. I have no clue when I will be home, but I do know that I will be. I miss everyone, my daughter the most and cannot wait to get back to living. As for now I am going to continue to fight and I know that God has a plan, a PERFECT plan for me. This experience will be my training day for the feats I have ahead of me, and simply because all of this happened, I will be ready, waiting, to face this monster head on, and I will have victory and rise above it, in the name of Jesus this is what I believe!
My O2 is holding up well which means everything is going like it should. The collapsed airway has repaired itself and I am surely on my way to being well. You would think I would have had a great day with everything looking up, but I didn't. A lot of things didn't go well today. I ended up being hooked up today for 12 hours straight and now I am hooked up once again. I know it doesn't seem like much, but imagine the times you have had a cold or the flu even and the doctors have given you a strong round of oral antibiotics to take for a few days. Now multiply that by 100 and imagine taking them all day around the clock. It is tiring on your body. Anytime someone is sick and they are fighting an infection it just simply wears you out. So today even though I have only walked twice in the past six days I have felt extremely fatigued, almost as if I have been mountain climbing.
Then there is the therapy. The lovely chest therapy. I have always enjoyed my therapy because it clears my lungs so well and makes me feel so much better. However take "Mississippi Mud" coursing through your already struggling body and add your husband pounding you in the chest on top of the infected areas in your lungs for 20-30 minutes while you lay flat, sit up and hang upside down(yes I said upside down!), and you get a really uncomfortable, annoying, endless painful experience. So today I let myself cry. I really wanted to the day they loaded me up in the ambulance. I remember feeling the knot in my throat and holding it back so my mom wouldn't see me upset. I wanted to be strong for everyone. Plus I wasn't really able to cry because I was already trying to catch my breath, getting upset would have only made it worse, so I tried to be the hero, the strong one. But today I didn't. Today I put my face in my hands and let myself be sad, hurt, confused, and tired. I have had so much happen to me in the past few days and I have not even began to place it all together in my mind. I understand what has happened to me happens to other CF patients all the time. That it may even be considered a normal CF routine. But it is not my normal. Not what I am use to. I have been terrified for the past six days laying here struggling not knowing what the uncertainty of my situation was.
Most of all I didn't want to show doubt in my faith. I felt like by letting myself cry and be upset it would show weakness like I didn't trust God has His hand in this. But it is really right the opposite. Because while I sat here in my hospital bed with my O2 strapped to my face and wept it was not only because I was sad, but also because I was overwhelmed that I was still here able to sit in my hospital bed with my O2 strapped to my face to do so. This whole experience has left me feeling so unimaginably different. I have so much to feel blessed for yet I still find myself with fears. Fear of this happening again, fear of it being worse the next time. It is truly a test how strong the human spirit really is. How much I can endure.
I am proud of my fight though. I have given this 150%. Never refusing medications or treatments. Even when my breathing was at its worst and laying upside down to do my chest therapy seemed impossible because I couldn't find the air, I still did it. I withstood it all. I have made a conscious effort to cough as hard as I can as often as I can. Stopping between poundings to lean up to cough up even the most minute secretions. Feeling my ribs rattle and shake like they were about to cave in on my lungs. Wondering if my lungs were going to cave in, and pushing that fear away and coughing anyway. With no choice I feel like I slipped off a cliff and have been holding on for dear life trying so desperately to pull myself back up. I know for sure God's hand was under me as I dangled waiting to catch me if I let go. My trust in Him and His position in this has never wavered. Never more in my life have I relied on my salvation as much as I have now. There has been an indescribable peace that has surrounded me that I know God has placed in this situation simply because of all the prayers that have been sent up.
So the plan as of now, is to take it one day at a time. I have no clue when I will be home, but I do know that I will be. I miss everyone, my daughter the most and cannot wait to get back to living. As for now I am going to continue to fight and I know that God has a plan, a PERFECT plan for me. This experience will be my training day for the feats I have ahead of me, and simply because all of this happened, I will be ready, waiting, to face this monster head on, and I will have victory and rise above it, in the name of Jesus this is what I believe!
Monday, April 26, 2010
Reasons
So as many of you know, the past few days have been very eventful of me. I have went from healthy to sick what seems like over night. I've spent most of my time laying in bed contemplating on what got me where I am now. How did this happen?? I always take such good care of myself. How did I slip through the cracks like this? Just accepting that this is CF is not enough for me. I want to believe we do have some control over our bodies. But now I am left thinking I am not so sure. Not that I think trying my best to stay well has been useless, because it has been the true opposite. However I believe I am becoming more aware now of what this disease is. I think for the first time in 27 years I know what it it is like to have Cystic Fibrosis. Up until this point I have always been a text book case. I get sick, I come in the hospital and I get well and go home. Then I think of how I am complaining even now, and my heart goes out to all of those who suffer with this disease. To those who deal with this reality day in and day out. You guys are my heroes. I can say I feel honored to fight with each of you for this life and at the same time no where near worthy to even say I stand beside you.
Not finding the air.
Friday morning it felt as if someone was holding a pillow over my face. I sat in bed and concentrated taking deep breaths in and out but no matter what I did I could not pull myself out of it. Feeling the secretions creep down into my airways and slowly closing them off. A taste in my mouth I will never forget. My heart trying to come through my chest to find the oxygen it so desperately needed to function.
An ambulance.
Watching the road sway behind me as I am carried to a safe place. Seeing people in their cars weaving back and fourth as we ride, some talking on their phones, some eating, no one paying attention. None of them knew of me, my life, my daughter, my passion for my God, slipping away in the back of the ambulance with plastic blowing fake air into my body.
Relief.
Feeling the oxygen, my safety net. No where near the same as "real" air, but still enough to give my heaving chest a rest. To let my heart catch it's breath and for my winded body to slump down and breathe in each sweet whoosh of air. The cold air that blew in the back because my precious husband told the driver how much I depended on being cold. How I needed it. Riding in the back of an icebox I was. But it was overwhelming and ugly and absolutely breathtaking. Praying to God as we rushed down the interstate. Prayer so intense that as long as I live I will never experience more beauty than in that divine moment. When the world fell away, my body was suffering, and it was just me and my precious savior, and while the reality of what is and what was held my body down He reached in and lifted my spirit up. To find your faith when you think you have lost it............is simply a moment you will never forget.
The Arrival.
Sinking down into my hospital bed. Knowing that I was here and help was on the way. The weight of the world on my shoulders carefully rolling off and falling onto my chest. Still struggling, but with great hope. Hope that this too would pass.
Time.
Time to think. Time to pray. Time to love. Knowing triggers. Pollen, mildew and mold. Learning valuable lessons. Like how pressure washing the house was more than likely not my brightest idea. Or how mowing the grass may be one of the things in this life I have to give up for just simply life in return. Spending each waking moment talking with God, knowing that He has His hand on my life and the amazement that everyone around me can see it also.
Talking and Walking.
Never more will I take for granted simple steps I take in the day or a conversation that will be had. These two things I have missed the most. Missed the easiness of them. Two small things that we never realize how important they are to us until they seem so far away.
Antibiotics, Steroids, and More Antibiotics
Swollen. Feeling the medicines course through my system. Almost feels as if a poison has been unleashed in me.They make you feel as if you are curling up inside. They tangle themselves in your system and almost as a cancer, they eat away at every part of your being, killing not just the bad parts but the good parts as well. Yet it is okay. I am alive. I am breathing better each day. Talking longer, able to stand longer on my own. So I know they are working.
Passion.
God's will. God's glory. To live, to love, to be well. To get better. To be a good mother to Peyton. To be a good grandmother to my future grandchildren. To be a good wife. To be a good wife to Sam. To be a good wife to Sam and love him. He has been my rock. Rubbing my back, turning my fan on and off, feeding me, helping me bathe, and doing everything short of breathing for me. He is amazing and I am blessed.
I am here today, fighting and struggling like never before. I believe that God has me here in this position for a purpose. If nothing else I will know how strong the human spirit truly is. How I can endure and push forward even in times of uncertainty. I know God will not abandon me. He knew this was going to happen. I trust in His plan and I will follow Him where ever He tells me I should go, even if I am walking clinging onto the air and grasping at this life. For God is my hope and without hope I am nothing.
Not finding the air.
Friday morning it felt as if someone was holding a pillow over my face. I sat in bed and concentrated taking deep breaths in and out but no matter what I did I could not pull myself out of it. Feeling the secretions creep down into my airways and slowly closing them off. A taste in my mouth I will never forget. My heart trying to come through my chest to find the oxygen it so desperately needed to function.
An ambulance.
Watching the road sway behind me as I am carried to a safe place. Seeing people in their cars weaving back and fourth as we ride, some talking on their phones, some eating, no one paying attention. None of them knew of me, my life, my daughter, my passion for my God, slipping away in the back of the ambulance with plastic blowing fake air into my body.
Relief.
Feeling the oxygen, my safety net. No where near the same as "real" air, but still enough to give my heaving chest a rest. To let my heart catch it's breath and for my winded body to slump down and breathe in each sweet whoosh of air. The cold air that blew in the back because my precious husband told the driver how much I depended on being cold. How I needed it. Riding in the back of an icebox I was. But it was overwhelming and ugly and absolutely breathtaking. Praying to God as we rushed down the interstate. Prayer so intense that as long as I live I will never experience more beauty than in that divine moment. When the world fell away, my body was suffering, and it was just me and my precious savior, and while the reality of what is and what was held my body down He reached in and lifted my spirit up. To find your faith when you think you have lost it............is simply a moment you will never forget.
The Arrival.
Sinking down into my hospital bed. Knowing that I was here and help was on the way. The weight of the world on my shoulders carefully rolling off and falling onto my chest. Still struggling, but with great hope. Hope that this too would pass.
Time.
Time to think. Time to pray. Time to love. Knowing triggers. Pollen, mildew and mold. Learning valuable lessons. Like how pressure washing the house was more than likely not my brightest idea. Or how mowing the grass may be one of the things in this life I have to give up for just simply life in return. Spending each waking moment talking with God, knowing that He has His hand on my life and the amazement that everyone around me can see it also.
Talking and Walking.
Never more will I take for granted simple steps I take in the day or a conversation that will be had. These two things I have missed the most. Missed the easiness of them. Two small things that we never realize how important they are to us until they seem so far away.
Antibiotics, Steroids, and More Antibiotics
Swollen. Feeling the medicines course through my system. Almost feels as if a poison has been unleashed in me.They make you feel as if you are curling up inside. They tangle themselves in your system and almost as a cancer, they eat away at every part of your being, killing not just the bad parts but the good parts as well. Yet it is okay. I am alive. I am breathing better each day. Talking longer, able to stand longer on my own. So I know they are working.
Passion.
God's will. God's glory. To live, to love, to be well. To get better. To be a good mother to Peyton. To be a good grandmother to my future grandchildren. To be a good wife. To be a good wife to Sam. To be a good wife to Sam and love him. He has been my rock. Rubbing my back, turning my fan on and off, feeding me, helping me bathe, and doing everything short of breathing for me. He is amazing and I am blessed.
I am here today, fighting and struggling like never before. I believe that God has me here in this position for a purpose. If nothing else I will know how strong the human spirit truly is. How I can endure and push forward even in times of uncertainty. I know God will not abandon me. He knew this was going to happen. I trust in His plan and I will follow Him where ever He tells me I should go, even if I am walking clinging onto the air and grasping at this life. For God is my hope and without hope I am nothing.
Saturday, March 27, 2010
Love. Love. Love.
I follow a lot of blogs, however one is very special to me. It is Eva's story. I am in love with Eva's story, because it is my story as well. Eva also has Cystic Fibrosis like me. She had a lung transplant after reaching the end stages of the disease. Her story was followed by cameras and a short documentary was made showing her journey as a CF patient on the transplant list. The movie has yet to be shown in the United States but is surely making its way to debut here soon.
After struggling for quite some time with chronic rejection of her new lungs, Eva passed away this morning at 9:30 a.m. She was by far one of the most inspiring people I have ever seen. Even though I did not know her, I felt extremely close to her. CF seems to draw a bond between each of its victims that is clearly unexplainable. Eva's story was one of courage, daring to dream and simply knowing to love. I highly recommend you check out her blog here-----> 65 Red Roses
Eva made great strides in bringing awareness to the CF community. Her life will be beyond missed in this world. I wish we had more people like her. People that knew what it was to make life their passion and to simply do nothing more than love.
Love. Love. Love.
Thursday, March 25, 2010
Resurrection Cookies
I follow a blog called Fern Creek Cottage and she posted this today and it is really too great not to share! I am also including the picture she used, since we have not made them yet! Read through the entire recipe! We will be making these this year for sure!
Resurrection Cookies
To be made the evening before Easter with your kids
1 c. pecans
1 ts. vinegar
3 egg whites
pinch salt
1 c. sugar
ziplock bag
wooden spoon or rolling pin
tape
Bible
Preheat oven to 300 degrees (this is important-don't wait until you're half done with the recipe)
Place pecans in ziplock bag and let your children beat them with a wooden spoon or rolling pin to break the pecans into small pieces~Explain that after Jesus was arrested He was beaten by Roman soldiers.
Read John 19:1-3.
Let each child smell the vinegar. Put 1 ts. into a mixing bowl.~Explain that when Jesus was thirsty on the cross He was given vinegar to drink.
Read John 19:28-30.
Add egg whites to vinegar. The eggs represent life.~Explain that Jesus gave His life to give us life.
Read John 10:10-11.
Sprinkle a little salt into each child's hand. Let them taste it and brush the rest of it into the bowl.~Explain that this represents the salty tears shed by Jesus' followers and the bitterness of our own sin.
Read Luke 23:27.
So far, the ingredients are not very appetizing. Add 1 cup sugar.~Explain that the sweetest part of the story is that Jesus died because He loves us. He wants us to know that we belong to Him.
Read Psalms 34:8 and John 3:16.
Beat with a mixer on high speed for 12-15 minutes until stiff peaks are formed.~Explain the white color represents-in God's eyes-the purity of those whose sins have been cleansed by Jesus.
Read Isaiah 1:18.
Fold in the broken nuts. Drop by teaspoons onto a wax paper covered cookie sheet.~Explain that each mound represents the rocky tomb where Jesus' body was laid.
Read Matthew 27:57-60.
Put the cookie sheet in the oven and turn the oven OFF. Give each child a piece of tape to seal the oven door.~Explain that Jesus' tomb was sealed.
Read Matt. 27:65-66.
Go to bed! ~Explain that they may feel sad to leave the cookies in the oven overnight. Jesus' followers were in despair when the tomb was sealed.
Read John 16:20, 22.
On Easter morning, open the oven door and give everyone a cookie. notice the cracked surface and take a bite. The cookies are hollow!! On the first Easter, Jesus' followers were amazed to find the tomb open and empty.
Read Matt. 28:1-9
The hollow cookie! =)
Wednesday, March 24, 2010
Healthcare Reform: Hear the Voice of the Sick
I have currently started following a blog written by a fellow "Cyster", Lauren Bombardier. She has recently posted a blog about the new healthcare reform, that caught my attention. I have been stirring for days trying to find the words to express how I feel about the new bill. While mulling it over, I came across her blog, and she said word for word just what I have been thinking. So with her permission I decided to repost her thoughts here on the current situation in America. The one thing I have been repeating over and over these past few days is this, for me as a Christian, I tend to look at the reform from a different angle. I understand everyone's concerns and fears about the new bill, but the one thing that sticks out to me the most and truly upsets me is hearing others say health care is to be "earned" and no one deserves a hand out. I, unfortunately, can not "earn" my health care. This is also leads me to think about Jesus and how He teaches us to live. So I am going to post MY view on this here::::::
Everyone we hear talking about this have been talking about how you have to "earn" health care, work hard for it and no one deserves a hand out. But wasn't that what Jesus was all about?? I don't claim to know everything about the Bible, however if my memory serves me correctly =) I do believe Jesus was in the hand out business himself. He didn't care what color you were, where you were at in life, or what bad things you had done. If we want to talk about who deserves what, NO ONE deserves the freedom we received through Christ when He died for us. But He did it anyway. I don't know if Jesus would be for or against this health reform but I do know He was all about hand outs and to people who LEAST deserved them. Makes me think of the scripture where he drug the woman out into the street and said, "He who is without sin, cast the first stone." He gave her a hand out and she was a whore.I thank GOD He sent a son to love me enough that He gave me a hand out, no matter who or what I really am.
With that being said I am going to post Lauren's thoughts on the matter here. I couldn't have said it better myself!!!! I encourage each of you to click on the link below and check out her blog as well. Thanks! =)
Blog:::: I have CF. So what?!
Written by: Lauren Bombardier
MORALITY
I had e-mailed one of my healthcare professors and asked him if he could speak about the new healthcare bill and what it meant for us and for elderly people (the topic of that class). I got into class and he thanked me for asking that question and began addressing the bill. However, he didn't address each part of the bill, he didn't address what it would change, but he addressed the ethics, the philosophy, the morals of what it means to have healthcare reform.
Everyone we hear talking about this have been talking about how you have to "earn" health care, work hard for it and no one deserves a hand out. But wasn't that what Jesus was all about?? I don't claim to know everything about the Bible, however if my memory serves me correctly =) I do believe Jesus was in the hand out business himself. He didn't care what color you were, where you were at in life, or what bad things you had done. If we want to talk about who deserves what, NO ONE deserves the freedom we received through Christ when He died for us. But He did it anyway. I don't know if Jesus would be for or against this health reform but I do know He was all about hand outs and to people who LEAST deserved them. Makes me think of the scripture where he drug the woman out into the street and said, "He who is without sin, cast the first stone." He gave her a hand out and she was a whore.I thank GOD He sent a son to love me enough that He gave me a hand out, no matter who or what I really am.
With that being said I am going to post Lauren's thoughts on the matter here. I couldn't have said it better myself!!!! I encourage each of you to click on the link below and check out her blog as well. Thanks! =)
Blog:::: I have CF. So what?!
Written by: Lauren Bombardier
MORALITY
I had e-mailed one of my healthcare professors and asked him if he could speak about the new healthcare bill and what it meant for us and for elderly people (the topic of that class). I got into class and he thanked me for asking that question and began addressing the bill. However, he didn't address each part of the bill, he didn't address what it would change, but he addressed the ethics, the philosophy, the morals of what it means to have healthcare reform.
He made a couple of great points. He talked about how there are people who are pro-life, but don't support a bill that would require thousands of people to have health insurance to save their lives. He informed us that the U.S.A. is ranked 30th in the world for infant mortality rates (some websites say 47). This alarming statistic is proof that we are not a perfect country as far as health care goes. He stressed that it is human nature that we don't like change. When we think something works, we don't want to change it. But the problem is.... it doesn't work as well as we think. [If you have the time, watch this documentary SICK AROUND THE WORLD on how other healthcare systems work, some better than the US.]
My professor quoted Kennedy who wrote to Obama before he died "What is the character of our nation?" It is important that when we think about the politics of healthcare reform we realize that it shouldn't be about hidden agendas, or political victories, or money. It should be about saving lives, providing the best care we can give. Unfortunately, that isn't what this debate has come down to. And that's sad.
It's sad that people can call the president of our nation a baby-killer, point fingers, and spread false rumors while there are thousands dying because they can't afford their health care bills; while there are thousands without homes because they can't afford their health care bills. Understandably, there are probably a lot of things going on behind the scenes that deserve accusation. But I think Americans and politicians have forgotten about the true nature of healthcare. It saves lives. It saves lives in a nation founded upon the declaration of "Life, liberty, and the pursuit of happiness"
As much as some people may "hate" Obama, he was right when he spoke about CHANGE. And people are so afraid of change that they won't hear of it. People need to think more carefully about the need for change when they begin to shut down every aspect of reform without even hearing what it will change, how it will affect them, how it can make America better than it is. Politicians need to put down their own agendas and look into the eyes of those families struggling with healthcare bills and tell them they are going to ease their pain. Maybe this health care bill isn't everything it should be, maybe it has problems, but it is a step in the right direction. With all of its political turmoil, it is a call for change, something we should not be afraid of.
Friday, March 19, 2010
Friday, March 12, 2010
Follow Me on "Echoes of an Artist"
Click the link below to my new blog designed around the new adventure in my life! Be sure to follow it to stay included in all the new pieces that come out!! =)
Wednesday, March 10, 2010
Echos of an Artist
It is finally time to reveal my TOP SECRET project!! This has been in the making for a few months now. I was really ready to expand my artist palate so to speak. So I am now unveiling my newest creations "ECHOS OF AN ARTIST".
"Alice in Wonderland" collection by Echos of an Artist
I am making jewelry. I have never been interested in jewelry until I started to think outside of the box and realized that canvas and paint are not my only mediums. From time to time I move to my sewing room and work on a project or two. Sometimes I knit a scarf or funky hat. I am constantly looking for a new outlet and way to express myself. I believe that this is a feat for any artist out there. We find new inspiration and need new ways of expression.
"Drink Me", by Echos of an Artist
"The White Rabbit" by Echos of an Artist
"Mad Hatter" by Echos of an Artist
When starting on this venture, like any artist, I wanted it to be an extension of who I am. I didn't want to simply string beads on a string. I wanted to make pieces of art for others to wear and enjoy. I also didn't want to dive in too deep too soon. So I thought it was best to start simple and go from there. I hope to make each piece unique and original. I want it to be something I love so dearly that I am almost sad to part with it.
I have several pieces coming up that you are simply NOT GOING TO WANT TO MISS! Pieces that I literally do not know at this point how I am going to give them up!! These pieces however are the first of many. These are done on black recycled scrabble tiles. The bails they are set on are sterling silver. I wanted to start with something I love and vintage came to mind! I absolutely adore anything old. Old things seem to have stories behind them. I don't really look at it as "old", however "touched". They just have more character and a way to make me smile. So I chose "Alice in Wonderland" for my first collection. Who does not love the story of Alice?? It is a timeless childhood favorite. I steered clear of the Disney remake however and stuck to the true original Lewis Carrol. These images are absolutely beautiful and stunning. Even as an adult they warm my heart and bring back so many fond memories of my youth.
"Alice in Wonderland" collection by Echos of an Artist
The price is $10.00 each.
This collection will only be offered now. I do not plan on doing any reproductions of this collection to keep them one of a kind. However I do have more "Alice in Wonderland" images I may add to the collection at a later date.
I have many more pieces to come, not all on scrabble tiles. However to find out on what, you will just have to wait! I don't want to spoil the surprise!
I also want to tell everyone that I have had a CUSTOM design made just for my CF walk coming up! The design is so vintage and simply put, ME! I told my designer exactly what I wanted and she delivered much more than that! I am currently in the process of making these with the special custom graphic made just for the walk. These will be priced at $10.00 each. $5.00 will be donated to Cystic Fibrosis Foundation to help find a cure for CF. While the other $5.00 will be put back into making even more of these treasures!! (I will post pictures VERY SOON!)
I am so excited to get the chance to pour so much of myself into something for others to enjoy. The collections coming soon will be similar to this. However some will have extra details and even a few will be hand painted! VERY excited about that!
I will be making a special blog soon also devoted to this. I hope each of you follow it as well. I want to thank everyone who has taken the time to stop by and check this out! I love each and every one of you!!!
Peace, Love and All That Hippie Jive
~Echos of an Artist~
*Photography done by Dominique Springer
"Alice in Wonderland" collection by Echos of an ArtistI am making jewelry. I have never been interested in jewelry until I started to think outside of the box and realized that canvas and paint are not my only mediums. From time to time I move to my sewing room and work on a project or two. Sometimes I knit a scarf or funky hat. I am constantly looking for a new outlet and way to express myself. I believe that this is a feat for any artist out there. We find new inspiration and need new ways of expression.
"Drink Me", by Echos of an Artist
"The White Rabbit" by Echos of an Artist
"Mad Hatter" by Echos of an ArtistWhen starting on this venture, like any artist, I wanted it to be an extension of who I am. I didn't want to simply string beads on a string. I wanted to make pieces of art for others to wear and enjoy. I also didn't want to dive in too deep too soon. So I thought it was best to start simple and go from there. I hope to make each piece unique and original. I want it to be something I love so dearly that I am almost sad to part with it.
I have several pieces coming up that you are simply NOT GOING TO WANT TO MISS! Pieces that I literally do not know at this point how I am going to give them up!! These pieces however are the first of many. These are done on black recycled scrabble tiles. The bails they are set on are sterling silver. I wanted to start with something I love and vintage came to mind! I absolutely adore anything old. Old things seem to have stories behind them. I don't really look at it as "old", however "touched". They just have more character and a way to make me smile. So I chose "Alice in Wonderland" for my first collection. Who does not love the story of Alice?? It is a timeless childhood favorite. I steered clear of the Disney remake however and stuck to the true original Lewis Carrol. These images are absolutely beautiful and stunning. Even as an adult they warm my heart and bring back so many fond memories of my youth.
"Alice in Wonderland" collection by Echos of an Artist The price is $10.00 each.
This collection will only be offered now. I do not plan on doing any reproductions of this collection to keep them one of a kind. However I do have more "Alice in Wonderland" images I may add to the collection at a later date.
I have many more pieces to come, not all on scrabble tiles. However to find out on what, you will just have to wait! I don't want to spoil the surprise!
I also want to tell everyone that I have had a CUSTOM design made just for my CF walk coming up! The design is so vintage and simply put, ME! I told my designer exactly what I wanted and she delivered much more than that! I am currently in the process of making these with the special custom graphic made just for the walk. These will be priced at $10.00 each. $5.00 will be donated to Cystic Fibrosis Foundation to help find a cure for CF. While the other $5.00 will be put back into making even more of these treasures!! (I will post pictures VERY SOON!)
I am so excited to get the chance to pour so much of myself into something for others to enjoy. The collections coming soon will be similar to this. However some will have extra details and even a few will be hand painted! VERY excited about that!
I will be making a special blog soon also devoted to this. I hope each of you follow it as well. I want to thank everyone who has taken the time to stop by and check this out! I love each and every one of you!!!
Peace, Love and All That Hippie Jive
~Echos of an Artist~
*Photography done by Dominique Springer
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.
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.
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