I see him layin' there
With his big brown stare
Love in his heart to share all around
Even tho they have him layed down
He wakes each day to breathe again
even when there is no wind
His body fights against him
He tells it not today
For everyday of his living life
He ignores the pain and keeps up the fight
My son your sick we know
Your breaths are no where near our own
Yet I am thankful for each day
Because your heart has shown me
that life and love are within me
You have taught me how to live
To be thankful and to give
That my life is much bigger than me
and that my God loves me
My son your so young
So much more is to come
The world is unknowing of your disease
Just of your joy and love to please
You walk everywhere with a smile
But your mama knows all the while
How sick you are and how much you fight
How every treatment, every night
Takes time and fun away from you
But this is what you have to do
So you can wake another day
To look at the world and say.....
Here I am, You won't win
This sickness may destroy my body
But never the person I am to be
Mama I'm sick you know
My breaths are no where near your own
Yet I am thankful for each day
Because your heart has shown me
that life and love are within me
You have taught me how to live
To be thankful and to give
That my life is much bigger than me
and that my God loves me
Thursday, October 7, 2010
Wednesday, September 8, 2010
Tuesday, August 31, 2010
Fly
I aboard this ship on the rocky seas. I sign my name on the line. I have my sack and lunch in hand. I am alone and ready for travel. I never bothered to look at where this vessel was headed. Just knew it was outta here. I needed the break, I had to leave to just have a chance to be. I begged to be left alone, I cried in frustration and honesty. Yet my dear friend you came once again, to push me right where I did not want to be. "Ahoy matey!" This ship is sailing off to the deep and dark sea. The weather is changing and this life is rearranging to be anew once more. Who knows why or how this came to be. I saw the sign and new it was for me. I breathe in the fresh salty air, as the waves break way and splash my face. I am refreshed and alive, not dying inside. I am me, the me I like to be. I take a deep sigh, I smile and say, "today is a day among days" just as a butterfly pulls out of her cocoon to embrace a new life with her beauty. I break free of the chains, the things that take away and distract my purpose of being. I am built a new and reborn to life as a believer and sinner of the same. I break free of these chains the ones that destroy the hope and faith inside of me. I break free of these chains that bind me, a sinner saddened by my old life. I break free of these chains and I hold them up high to shout "What a sinner am I" its true, I cannot lie, but it's these broken chains that say its okay. "Forgiveness" is there in the air and the sun kissing my neck and my check. Forgiveness my love is yours, I did not strike you down, for I wanted to raise you up. But you my dear child are a free willed soul that must choose this life. You can hang on to your old ways your selfish life of lies and deceit. You can love your sin and keep liven in this cocoon till you rot and cease to be. I give you the choice and freedom to choose, but the offer is there to break free. You will be stripped of all your legs and given just one set and you will be given wings to fly. You must trust blindly that you can do everything differently as you once did. Or you will sit in fear on that branch and then in time your wings and body will die. All options lead to death of your flesh, but only one leads to me, the one that tells you to open your new wings and fly!
Thursday, August 26, 2010
A Strange Encounter
So the other day I was walking in my neighborhood. I was alone with my thoughts. I happened to see a cute and quaint nature preserve attached to my addition. I thought, how lovely. I went in and looked around as the wind kissed my check. I stood there in the silence and then I heard in the breeze ever so softly "are you lost?" I had only one thought as I broke into tears.. "Yes" I cried "I am deeply and terribly LOST!!" The wind circled back around and whisked past my ear as I heard it once more "Be as I am, for I am"I immediately questioned the wind "Are you God" but nothing came back to me. I had to sit down. I must be imagining this, it must be my mind! But NO I heard it, I did, it was clear enough to acknowledge that much. So then what? What does this mean? Who? and How? As if there wasn't enough in my head, now I have to figure this out! I had to break it down..
Yes I am lost but why? Am I lost in the way of faith? NO. Am I lost in the way of trust? Maybe. Am I lost in love? NO. Am I lost with direction? NO. Am I lost with the plan? YES!!!!! Okay! ding ding ding! The Plan the one and only almighty PLAN. With maybe a little trust issues too. Ok so what is this so called PLAN? Is it my plan? I would like to think so , but NO. Is it my husbands plan? I am sure he too would like to think so, but NO, So is it the peoples plan? Not at all. Ah, So is it the Lords PLAN? YES! There it was, the Lords plan, no one else's. How simple it was to answer this, yet still so hard to trust in it! Why? Are you afraid? VERY. Are you anxious? Greatly! Are you ready, even if it means waiting? What? What do you mean ready AND waiting? How can I be ready if I have to wait? Because when I prune you, You must be patient for new growth. When I change you, You must be ready for change. When I love you, You must love me too. When I nee.....Wait, wait, wait, wait! Hold the Phone! (breathe in deep breath, long exhale) Okay so I see I have a Plan that is mine but designed by the Lord. I have to trust that its right even when it feels wrong. I have been getting this, strangely all to well. What I struggle with is that part of the plan where you know where you are going, you can see everything changing, yet you still aren't where you thought you would be!.. Sooo, you want to tell me, YOU are ready AND waiting? Yes, that is it! And now you want to know what to do with that? YES, you got it, that's what I am lost in!!! I am stuck in that spot in between. I can't go back now its been decided and its within reach. Yet I can't go forward because its not time, the things that must be in place, are not. But why am I in a different spot in my Plan, than my plan itself? So Do you trust your plan? YES. Do you trust in the Lord? YES. So why can't you trust that you are in the right spot in your plan? (cough cough, crab collar, clear the throat) Ummm, yeah I never thought of it like that. Would you say you might have tried filling in the blanks of the plan with your own thoughts? (shaking head sighing) Yes, I would say that, but in my defense... Ah, Ah, Ah, Do you make your PLAN?(even bigger sigh) NO I don't. Okay so is this another patients lesson? NO, its a trust lesson. Ha, Wha, trust, I trust.... umm I mean, I kinda trust, sometimes.. Okay truly, I do feel that I trust in the Lord and the PLAN. Its just hard to understand!... And that is it, Understanding, trusting is not having to understand! "Be as I am for I am" I get it, be as I am, like the wind careless going where its directed without a concern.. For I am, For the Lord.
Yes I am lost but why? Am I lost in the way of faith? NO. Am I lost in the way of trust? Maybe. Am I lost in love? NO. Am I lost with direction? NO. Am I lost with the plan? YES!!!!! Okay! ding ding ding! The Plan the one and only almighty PLAN. With maybe a little trust issues too. Ok so what is this so called PLAN? Is it my plan? I would like to think so , but NO. Is it my husbands plan? I am sure he too would like to think so, but NO, So is it the peoples plan? Not at all. Ah, So is it the Lords PLAN? YES! There it was, the Lords plan, no one else's. How simple it was to answer this, yet still so hard to trust in it! Why? Are you afraid? VERY. Are you anxious? Greatly! Are you ready, even if it means waiting? What? What do you mean ready AND waiting? How can I be ready if I have to wait? Because when I prune you, You must be patient for new growth. When I change you, You must be ready for change. When I love you, You must love me too. When I nee.....Wait, wait, wait, wait! Hold the Phone! (breathe in deep breath, long exhale) Okay so I see I have a Plan that is mine but designed by the Lord. I have to trust that its right even when it feels wrong. I have been getting this, strangely all to well. What I struggle with is that part of the plan where you know where you are going, you can see everything changing, yet you still aren't where you thought you would be!.. Sooo, you want to tell me, YOU are ready AND waiting? Yes, that is it! And now you want to know what to do with that? YES, you got it, that's what I am lost in!!! I am stuck in that spot in between. I can't go back now its been decided and its within reach. Yet I can't go forward because its not time, the things that must be in place, are not. But why am I in a different spot in my Plan, than my plan itself? So Do you trust your plan? YES. Do you trust in the Lord? YES. So why can't you trust that you are in the right spot in your plan? (cough cough, crab collar, clear the throat) Ummm, yeah I never thought of it like that. Would you say you might have tried filling in the blanks of the plan with your own thoughts? (shaking head sighing) Yes, I would say that, but in my defense... Ah, Ah, Ah, Do you make your PLAN?(even bigger sigh) NO I don't. Okay so is this another patients lesson? NO, its a trust lesson. Ha, Wha, trust, I trust.... umm I mean, I kinda trust, sometimes.. Okay truly, I do feel that I trust in the Lord and the PLAN. Its just hard to understand!... And that is it, Understanding, trusting is not having to understand! "Be as I am for I am" I get it, be as I am, like the wind careless going where its directed without a concern.. For I am, For the Lord.
I must be like the wind for the Lord.... I look up and see I haven't moved for some time.. I stand up and head home from this strange encounter with myself....
Tuesday, August 24, 2010
Seeing Isn't Always Believing!
It hit me toady as I was thinking about a post I read on Facebook. To often people do not "Believe" those with CF are sick because they often do not look it. If someone breaks a bone, its broke, we see it. Others who may be in the fight with cancer are often put on chemo which makes hair fall out and much worse things, we see it. Some one who has Parkinson's shakes or more like twitches and has failures in mobility, we see it. Even people with add or autism have outwardly displays of their condition, again, we see it! When it come to Cf we can't see it. We see a cough mistaken as allergies or a cold. We may see someone spit stuff out, a stranger may think they are a smoker. The times we truly see CF in its ugliest is when they are really sick or even worse. Yet even at times with my son being so young he even makes sick look do-able.
So as I thought about this I also thought about how much stronger my faith has become in the Lord since I have had Brandon. Some of that has to do with contributing factors in all parts of my life, ie: maturity, becoming a mom, happiness, knowing the fight for my child's life, good church, great marriage ect... Then I realized a common thing in our lives and the Belief of the Lord. Constantly Brandon and his CF is not taken seriously, people don't "get it" they cant 'see it" so it easy to ignore and easy to not "believe". In the beginning I felt angry at others for not understand or in my eyes at the time "caring". I was then, with growth, saddened by the fact that so many people will never really know him or his life, and therefore us and our lives. I really want people to just "Believe" and know he his really sick. That a cold in the house is a much bigger threat. That smoke will cause issues and result in more treatments to get it out of his lungs. With all threats we have to increase preventative care and in our house we spend a minimum of 3 hours of care a day to be able to keep him in our lives longer, as well as try to take away the pains and discomforts that CF cause. Many people may say "Yeah I know he has Cf" or even "yeah I know what Cf is". Just as many may say "Yeah I know who God is" or even "yeah I know what God's about". Knowing isn't always believing.
So then today I realized how God must feel. How so many people do not "Believe" or "Get it" so they ignore him. When it comes to having to just "Believe", things change. Its not so serious when you can pretend its not there. To me the Lord has presented himself in this disease, he has been able to show a little bit of how things have always been for him. It makes it change for me. It brings me closer to his suffering and helps me see the love he has for us even more. Unfortunately there will always be those who don't get it or believe, but when they do its amazing!
Friday, August 6, 2010
Best Case and Worse Case
My name is Best Case and my husband is Worse Case. I find it interesting how different everything is to us. We decided to take a walk through the forest. I decide with my lack of knowledge for directions and compasses that I must be trusting in getting out where I need to be. My husband is my polar opposite. He has a map with the highlighted path we should take to make this specific destination he has picked as the right end to our walk. He has a compass and a keen sense of direction. We decide to go hand in hand and enjoy this beautiful day. Everything is fine and I am enjoying everything in the moment. My husband, Worse Case is profiling the area making sure there aren't any crazed people hiding or hungry animal on the attack. To say the least he is not really enjoying this in the way I am. I ask him to please just stop and take it all in. As we are walking, finally enjoying the moment we stop at a fork in the path. My husband gets out his map and deciphers where to go. I was oblivious as to even where we were. My husband asked me if I could please just pay a little more attention to my surroundings.
Worse Case decides we will take the clear path that leads directly to our destination. But I, Best Case, want to take the other path because it looks and feels like an amazing and special place. I beg Worse to take the less chosen path with me. Because he loves me and can see its important, he agrees, but is not happy about it. As we walked along I saw an exotic bird chirping in the trees, I was so entranced by its beauty that next thing I know my husband is tapping my shoulder, impatiently waiting for me to move on. This is when we heard a rustle in the distance. Worse gets out his knife and gun, he bunkers down pulling me with him. I am grabbing for my camera out of my backpack. It is a funny site now that I look at this scene, Him the Army Ranger, ready for the attack and me the simpleton with my camera like some silly tourist. I had to stop my self and understand that I do not know what is out there and I too should be safe and not so oblivious. Not having any training of survival I bunker close to my husband counting on my husband to protect me.
As the rustling gained closer my husband moved from his position to another positing, with great skill. I try to mimic his moves as quietly as possible. He then looks to me and makes some hand gestures as to tell me where to go and what to do.. I had to laugh at myself for being sooo unskilled. I try to follow these directions as if it were some game of charades. He seemed content with my actions to his directions so I must have gotten it right. I watch Worse Case in all his beauty, this is what he was made for, no matter what is out there he is prepared and ready and in a dangerous situation he really does have the upper hand. As I just watch him in awe and I realize how amazing he is I get more hand gestures that lead me to where he is.... As I get to him and crouch down he whispers in my ear "get out your camera now" I was confused but I did it. I being Best Case do not handle myself well in a scary and dangerous situation.. I freeze because I never anticipated or planned for anyhting negative or dangerous happening... On a side note I remember When I was cooking for Worse one night and I started a kitchen fire on the stove. I was clueless and frozen in the spot not knowing what to do. I Barely could get a word out, but called for Worse to help. He came in and calmly put out the fire. I realized then I didn't trust myself to make the right decision, I had flashes of my grandmother who was in a fire and the fear set in leaving me incapable of handling myself..... I still felt like that girl not knowing what to do, but I had learned over the years that this is Worse's department and to trust his lead. And THEN.,.. All of the sudden,,!!! It Happened., A family of Bears were passing through right where we were once standing. My husband had gotten us far enough from them to be safe, but yet I was able to take some amazing shots of this family of Bears. I looked up and saw a peace in my husbands face that was breathtaking. Because of his abilities he was able to know he was safe and I was safe and really enjoyed the moment.
After the bears had passed we moved on to our walk and back on our path. This is when Worse lost his peace and started focusing soo much on the map and compass. I was excited to just see where we ended up and roll with it. At the moment I was content with noises and the smells. I was in a happy place of mine and found my peace in just trusting our path. I wasn't concerned of where it lead to or even how long it would take to get there. Worse stopped me and just asked me "are you sure this path is going to lead to our destination" I smiled brightly and said "Nope" I could see the annoyance on Worse's face. I asked him " Does it matter where we end up, if we took a great path" His face turned red and he was in extreme disbelief that I really had no plan or concern. I pulled him into me and hugged him closely. I told him to lighten up and enjoy this time with me. When we reach the end it may be our planned destination or it May be a completely unexpected one that in the end is where we need to be. He gave me a humpf and looked at me as I were alien. So this is when I grabbed my camera. I showed him all the shots I had taken on the beginning planned path. They were average as in anyone could take them. A traditional picture of a bird in a nest and trees.. A few leaves and a butterfly on a flower and a few snaps of him plain faced and Army stance. They were good pictures, but then I scrolled through the pictures that followed on our path less traveled.. There were beautiful shots of the bear family. A mother bear protecting her young a baby bear rolling around without a fear in the world, another bear licking his paw. There were pictures of old oaks and huge roots, wildflowers trailing on the ground, and a beautiful shot of the sun peaking through the trees looking as if it were kissing Worse's cheek. That is when his face softened. He told me he never saw himself in the light like that.
The path less traveled, kinda a scary and not so easy seemed to really bring out our abilities, our talents and our passions. It brought us closer and made us work together. It brought out our beauty and it encouraged us to walk in the light. Not just the light, but "THE LIGHT" (the light of the Lord). It was the right path, traveled by trust and God given skill. We traveled for 3 more weeks and we were thirsty. God provided what we needed and at the end of our travels we meet a strange and unexpected destination,, Home. I know that may sound weird but it was not our dwelling we call home, it was our children, it was strangers we knew were our friends, it was that feeling you get when you walk into a house before you buy it that just says, this is home.
Worse Case decides we will take the clear path that leads directly to our destination. But I, Best Case, want to take the other path because it looks and feels like an amazing and special place. I beg Worse to take the less chosen path with me. Because he loves me and can see its important, he agrees, but is not happy about it. As we walked along I saw an exotic bird chirping in the trees, I was so entranced by its beauty that next thing I know my husband is tapping my shoulder, impatiently waiting for me to move on. This is when we heard a rustle in the distance. Worse gets out his knife and gun, he bunkers down pulling me with him. I am grabbing for my camera out of my backpack. It is a funny site now that I look at this scene, Him the Army Ranger, ready for the attack and me the simpleton with my camera like some silly tourist. I had to stop my self and understand that I do not know what is out there and I too should be safe and not so oblivious. Not having any training of survival I bunker close to my husband counting on my husband to protect me.
As the rustling gained closer my husband moved from his position to another positing, with great skill. I try to mimic his moves as quietly as possible. He then looks to me and makes some hand gestures as to tell me where to go and what to do.. I had to laugh at myself for being sooo unskilled. I try to follow these directions as if it were some game of charades. He seemed content with my actions to his directions so I must have gotten it right. I watch Worse Case in all his beauty, this is what he was made for, no matter what is out there he is prepared and ready and in a dangerous situation he really does have the upper hand. As I just watch him in awe and I realize how amazing he is I get more hand gestures that lead me to where he is.... As I get to him and crouch down he whispers in my ear "get out your camera now" I was confused but I did it. I being Best Case do not handle myself well in a scary and dangerous situation.. I freeze because I never anticipated or planned for anyhting negative or dangerous happening... On a side note I remember When I was cooking for Worse one night and I started a kitchen fire on the stove. I was clueless and frozen in the spot not knowing what to do. I Barely could get a word out, but called for Worse to help. He came in and calmly put out the fire. I realized then I didn't trust myself to make the right decision, I had flashes of my grandmother who was in a fire and the fear set in leaving me incapable of handling myself..... I still felt like that girl not knowing what to do, but I had learned over the years that this is Worse's department and to trust his lead. And THEN.,.. All of the sudden,,!!! It Happened., A family of Bears were passing through right where we were once standing. My husband had gotten us far enough from them to be safe, but yet I was able to take some amazing shots of this family of Bears. I looked up and saw a peace in my husbands face that was breathtaking. Because of his abilities he was able to know he was safe and I was safe and really enjoyed the moment.
After the bears had passed we moved on to our walk and back on our path. This is when Worse lost his peace and started focusing soo much on the map and compass. I was excited to just see where we ended up and roll with it. At the moment I was content with noises and the smells. I was in a happy place of mine and found my peace in just trusting our path. I wasn't concerned of where it lead to or even how long it would take to get there. Worse stopped me and just asked me "are you sure this path is going to lead to our destination" I smiled brightly and said "Nope" I could see the annoyance on Worse's face. I asked him " Does it matter where we end up, if we took a great path" His face turned red and he was in extreme disbelief that I really had no plan or concern. I pulled him into me and hugged him closely. I told him to lighten up and enjoy this time with me. When we reach the end it may be our planned destination or it May be a completely unexpected one that in the end is where we need to be. He gave me a humpf and looked at me as I were alien. So this is when I grabbed my camera. I showed him all the shots I had taken on the beginning planned path. They were average as in anyone could take them. A traditional picture of a bird in a nest and trees.. A few leaves and a butterfly on a flower and a few snaps of him plain faced and Army stance. They were good pictures, but then I scrolled through the pictures that followed on our path less traveled.. There were beautiful shots of the bear family. A mother bear protecting her young a baby bear rolling around without a fear in the world, another bear licking his paw. There were pictures of old oaks and huge roots, wildflowers trailing on the ground, and a beautiful shot of the sun peaking through the trees looking as if it were kissing Worse's cheek. That is when his face softened. He told me he never saw himself in the light like that.
The path less traveled, kinda a scary and not so easy seemed to really bring out our abilities, our talents and our passions. It brought us closer and made us work together. It brought out our beauty and it encouraged us to walk in the light. Not just the light, but "THE LIGHT" (the light of the Lord). It was the right path, traveled by trust and God given skill. We traveled for 3 more weeks and we were thirsty. God provided what we needed and at the end of our travels we meet a strange and unexpected destination,, Home. I know that may sound weird but it was not our dwelling we call home, it was our children, it was strangers we knew were our friends, it was that feeling you get when you walk into a house before you buy it that just says, this is home.
Monday, July 26, 2010
What is Cystic Fibrosis?
Cystic Fibrosis... or CF.... what really is it?
I have been struggling with people not really knowing what CF is. I had a neighbor stop us to chat the other day as we returned from our family walk. He commented on how big Brandon is getting.. then he said "So he is probably growing outta that thing he has huh?" I told him "No he will always have it and it gets worse as he gets older". It is a comment that has stuck with me for a while now and I cannot get it to leave my brain. I believe its because it was not intended as a hurtful comment nor did I take it that way, but as time goes on I find it sad that people don't get it. I know I have blogged about this and yet it still is heavy on me. How else are you out there gonna get it if I don't show you.
I spend a good part of my days and life being positive for Brandon and my family. To often us Cf families don't like to think about or even talk about CF in a negative light because simplicity is bliss. I guess I think about when I have been in pain or even better getting a tattoo I had to think about other things than the pain to get through it. If I spent the whole time talking about how much the needle hurt and the artist was being a little heavy handed then I would either want to hit the artist or quit in the middle. Most of the time you talk about things that have nothing to do with what is going on at the moment. Other times you talk about the positive things, like how you hope it will turn out in the end. People who actually have CF have to be able to learn to ignore pains often that you may not even know they are struggling. I guess this is why I really study Brandon, I know as of now he cannot tell me and as he gets older he won't tell me every time he is struggling or hurting. Most of the time we only really know is when its gotten bad enough to earn a 14 day stay or longer "in the hole" as many jokingly call it. This is where IV medications are given because oral medications are not enough to kill off the bacteria attacking their lungs. During this time they are also struggling to have an appetite so they must usually force themselves to eat, children often refuse to eat and many time even through daily care at home must have feeding tubes to supplement the nutrients their body needs. Many times even if the person does eat it may not be enough which can be extremely frustrating and they have no other option. (I have recently written a guide for parents to fight through the food issues and hopefully avoid a feeding tube.) Also while in the hospital IVs can only stay on for so long, so they start their stay with an IV to later be given a PICC line:
A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction.
PICCs are usually inserted by radiologists, doctors, physician assistants (in the USA), radiologist assistants (in the USA), or specially trained certified registered nurses using ultrasound, chest radiographs, and fluoroscopy to aid in their insertion and to confirm placement. PICC insertion is a sterile procedure, but does not require the use of an operating room. When done at bedside, (that is, in the patient's room), a suitable sterile field must be established and maintained throughout the procedure. For this reason, visitors are normally requested to leave the room until the insertion is complete.
The insertable portion of a PICC varies from 35 to 60 centimeters in length, that being adequate to reach the desired tip position in most patients. Some lines are designed to be trimmed to the desired length before insertion, others are simply inserted to the needed depth with the excess left outside. As supplied, the line has a guide wire inside. This wire is provided to stiffen the (otherwise very flexible) line so it can be pushed through the veins. The wire is removed and discarded after insertion.
I have heard variations of how this affects people who are frequent fliers so to say on the PICC lines. Brandon's first PICC he was not sedated enough which resulted in 5 tries of insertions and a hamburger resemblance on the failed arm. Also these things are fraqile so B has broken one and even has a scar from receiving a central line in the groin. I have talked to parents of little ones who often have issues of their little ones ripping out PICC lines. I have talked to adults who have received so many that they have many collapsed veins and or numbness and rejection from many veins. Often people consider getting a port a cath, which is a line that is connected to a button so to say that is buried under the skin. this way when it needs accessed it is there and just need to have a needle break through the skin each time. It is often used in cancer patients or others who receive frequent IV's. This to some is still a hard choice and for many can cause them to be selfconcious.
So daily while at home CF still affects them more than you, or even I for that matter can know. I try to often think about the times I have had a horrible sinus infection and I have all that build up of mucus in my body... yeah that is normal and extra thick for someone with CF. I think of the times I have had bronchitis and it felt like it was hard to breathe and that there was junk stuck inside my lungs that no matter how hard I tried it wouldn't go away. How often I coughed and surprisingly it felt good and hurt at the same time when I coughed because It relieved that nagging tickle in my throat and lungs of needing to release the gook, yet when you are always coughing it irritates other areas of your throat and chest.. Yes this to is normal for CF. I think about when I go running and I get that burning sensation and I find it difficult to catch my breath, so I stop and take in some deep breaths and realize someone with CF doesn't get to stop and "catch" their breath. I think of someone drowning and realize that if I run that thought in slow motion minus the water I am sadly looking at CF's destruction it has on the lungs....
How is this so? The easiest way to describe it is the gene that doesn't work regulates the salt and water in our body. When you think of a frog and they have the mucus coating that is sticky, which is how they can shoot their tongues out and catch flies. We all have a mucus type substance in our body that travels through many channels and organs, such as the lungs and pancreas. Our bodies regulate this mucus to make it the right consistency to carry the things the body needs with out holding onto too much. Someone with CF has that regulator broken. The salt which breaks that mucus down is sent to the wrong place and leaves the system through the flesh, which is why they will taste really salty when sweating. At times they loose way to much salt from their bodies, so when they are hot and sweaty they are advised to have a little salt. Because this is broken the mucus in their bodies not only catches the flies, but then becomes too sticky and can't let it go.. any bacteria or dangerous attacker can hang on quite easily. Also because of how heavy and thick it is it doesn't make it out of the body as it is supposed to. Filling every duct and blocking the body from releasing other essential things, such as enzymes in the pancreas to digest food. Which they must take supplemental enzymes to digest their food. Over time and as someone with CF gets older these organs tend to become damaged and scarred. If you can imagine your lungs are two buckets. As time goes on these buckets get filled. Every morning and night you empty these buckets but there is always things left behind, slowly coating more and more of the open space in the buckets. If one is not good about emptying their buckets they will sooner not have room for what they need (air). Every time they have an attack there is possibilities of severe damage and when this happens we will use a rock to represent the space it damaged so between rocks and mucus slowly filling the buckets eventually there is no room left.
Now sometimes people are blessed with new buckets (lung transplants) to start out fresh and begin the process over again, yet they get to hopefully add many, many years on to their lives. Also This lung issue is not to be compared to asthma, even though it may sometimes look like it. When an asthma attack happens the bronchials close and tighten making it hard to breath until the attack is over, although many people with CF do also have an attack on the brochials the area of concern is the lungs themselves that slowly deteriorate over their live. People with CF do massive amounts of therapies to try to force out as much of that sticky mucus as possible. They take antibiotics daily to help the everyday intruders that their bodies are unable to defend against. They take many medications to help with eating and reflux, and SO much more. They have many things that break down and do not work because of all the other things attacking them. Someone with CF fights daily to live half of the projected life the rest of us are said to expect. Most people with CF are used to coughing, shortened breathing, tightness and shooting pains in the chest, gas, bloating, indigestion and stomach pain, and way more than I could ever describe. They are plagued with enough things that many of us would take off work for, and as time goes on forces them to not be able to work with as much ease, whether its because of frequent sickness, long hospitalizations, employers not understanding CF and treating them as if they are liers or lazy. Also many adult CF'ers struggle with medical insurance and often times are not covered for many things. CF is not taking as serious as cancer or other more understood or common medical conditions. People talk alot about Cancer because it is well known, anyone you meet most likely knows one or more people who have struggled with, died from or survived cancer. Cancer is caused from so many things and in so many parts of the body, cancer can hit you at any age and can take you at any age. You can suffer for years or even die before being diagnosed with cancer. It is Horrible, I have lost many people I know to cancer. For someone to come to you and say my child has cancer everyone knows what it is and everyone sympathises and is there to rally and support. When you tell someone my child has CF, even if they stay to listen to what CF is in the short, they say that's to bad and walk on more often than not. Now I have a hard time with this because it is a double edge sword. Do I want more people to know about CF so it is taken serious and understood as the horrible destructive disease that is genetic and incurable...yes, but at what cost is that gonna be? I do not wish there were more people with CF so others can understand it, So what is a mom to do? How do I save my child without wishing more people to suffer? How do I get people to understand and care even though it doesn't affect them in any way?
CF does suck, it sucks everyday from day one from a medical and physical standpoint for those who suffer from it and it sucks for those who love someone with it to not be able to take it away or control the inevitable. So we all just focus on the positive things and carry on, we have all learned things about life and how precious it is. We all know that CF doesn't control your soul, your heart, your faith or your you-i-ness, only you control that. This is why the most common statement is found.."boy I never knew they were really that sick" because it is just a body, a very earthly thing that will not come with them in Heaven. They are not sick, their body is.
I have been struggling with people not really knowing what CF is. I had a neighbor stop us to chat the other day as we returned from our family walk. He commented on how big Brandon is getting.. then he said "So he is probably growing outta that thing he has huh?" I told him "No he will always have it and it gets worse as he gets older". It is a comment that has stuck with me for a while now and I cannot get it to leave my brain. I believe its because it was not intended as a hurtful comment nor did I take it that way, but as time goes on I find it sad that people don't get it. I know I have blogged about this and yet it still is heavy on me. How else are you out there gonna get it if I don't show you.
I spend a good part of my days and life being positive for Brandon and my family. To often us Cf families don't like to think about or even talk about CF in a negative light because simplicity is bliss. I guess I think about when I have been in pain or even better getting a tattoo I had to think about other things than the pain to get through it. If I spent the whole time talking about how much the needle hurt and the artist was being a little heavy handed then I would either want to hit the artist or quit in the middle. Most of the time you talk about things that have nothing to do with what is going on at the moment. Other times you talk about the positive things, like how you hope it will turn out in the end. People who actually have CF have to be able to learn to ignore pains often that you may not even know they are struggling. I guess this is why I really study Brandon, I know as of now he cannot tell me and as he gets older he won't tell me every time he is struggling or hurting. Most of the time we only really know is when its gotten bad enough to earn a 14 day stay or longer "in the hole" as many jokingly call it. This is where IV medications are given because oral medications are not enough to kill off the bacteria attacking their lungs. During this time they are also struggling to have an appetite so they must usually force themselves to eat, children often refuse to eat and many time even through daily care at home must have feeding tubes to supplement the nutrients their body needs. Many times even if the person does eat it may not be enough which can be extremely frustrating and they have no other option. (I have recently written a guide for parents to fight through the food issues and hopefully avoid a feeding tube.) Also while in the hospital IVs can only stay on for so long, so they start their stay with an IV to later be given a PICC line:
A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction.
PICCs are usually inserted by radiologists, doctors, physician assistants (in the USA), radiologist assistants (in the USA), or specially trained certified registered nurses using ultrasound, chest radiographs, and fluoroscopy to aid in their insertion and to confirm placement. PICC insertion is a sterile procedure, but does not require the use of an operating room. When done at bedside, (that is, in the patient's room), a suitable sterile field must be established and maintained throughout the procedure. For this reason, visitors are normally requested to leave the room until the insertion is complete.
The insertable portion of a PICC varies from 35 to 60 centimeters in length, that being adequate to reach the desired tip position in most patients. Some lines are designed to be trimmed to the desired length before insertion, others are simply inserted to the needed depth with the excess left outside. As supplied, the line has a guide wire inside. This wire is provided to stiffen the (otherwise very flexible) line so it can be pushed through the veins. The wire is removed and discarded after insertion.
I have heard variations of how this affects people who are frequent fliers so to say on the PICC lines. Brandon's first PICC he was not sedated enough which resulted in 5 tries of insertions and a hamburger resemblance on the failed arm. Also these things are fraqile so B has broken one and even has a scar from receiving a central line in the groin. I have talked to parents of little ones who often have issues of their little ones ripping out PICC lines. I have talked to adults who have received so many that they have many collapsed veins and or numbness and rejection from many veins. Often people consider getting a port a cath, which is a line that is connected to a button so to say that is buried under the skin. this way when it needs accessed it is there and just need to have a needle break through the skin each time. It is often used in cancer patients or others who receive frequent IV's. This to some is still a hard choice and for many can cause them to be selfconcious.
So daily while at home CF still affects them more than you, or even I for that matter can know. I try to often think about the times I have had a horrible sinus infection and I have all that build up of mucus in my body... yeah that is normal and extra thick for someone with CF. I think of the times I have had bronchitis and it felt like it was hard to breathe and that there was junk stuck inside my lungs that no matter how hard I tried it wouldn't go away. How often I coughed and surprisingly it felt good and hurt at the same time when I coughed because It relieved that nagging tickle in my throat and lungs of needing to release the gook, yet when you are always coughing it irritates other areas of your throat and chest.. Yes this to is normal for CF. I think about when I go running and I get that burning sensation and I find it difficult to catch my breath, so I stop and take in some deep breaths and realize someone with CF doesn't get to stop and "catch" their breath. I think of someone drowning and realize that if I run that thought in slow motion minus the water I am sadly looking at CF's destruction it has on the lungs....
How is this so? The easiest way to describe it is the gene that doesn't work regulates the salt and water in our body. When you think of a frog and they have the mucus coating that is sticky, which is how they can shoot their tongues out and catch flies. We all have a mucus type substance in our body that travels through many channels and organs, such as the lungs and pancreas. Our bodies regulate this mucus to make it the right consistency to carry the things the body needs with out holding onto too much. Someone with CF has that regulator broken. The salt which breaks that mucus down is sent to the wrong place and leaves the system through the flesh, which is why they will taste really salty when sweating. At times they loose way to much salt from their bodies, so when they are hot and sweaty they are advised to have a little salt. Because this is broken the mucus in their bodies not only catches the flies, but then becomes too sticky and can't let it go.. any bacteria or dangerous attacker can hang on quite easily. Also because of how heavy and thick it is it doesn't make it out of the body as it is supposed to. Filling every duct and blocking the body from releasing other essential things, such as enzymes in the pancreas to digest food. Which they must take supplemental enzymes to digest their food. Over time and as someone with CF gets older these organs tend to become damaged and scarred. If you can imagine your lungs are two buckets. As time goes on these buckets get filled. Every morning and night you empty these buckets but there is always things left behind, slowly coating more and more of the open space in the buckets. If one is not good about emptying their buckets they will sooner not have room for what they need (air). Every time they have an attack there is possibilities of severe damage and when this happens we will use a rock to represent the space it damaged so between rocks and mucus slowly filling the buckets eventually there is no room left.
Now sometimes people are blessed with new buckets (lung transplants) to start out fresh and begin the process over again, yet they get to hopefully add many, many years on to their lives. Also This lung issue is not to be compared to asthma, even though it may sometimes look like it. When an asthma attack happens the bronchials close and tighten making it hard to breath until the attack is over, although many people with CF do also have an attack on the brochials the area of concern is the lungs themselves that slowly deteriorate over their live. People with CF do massive amounts of therapies to try to force out as much of that sticky mucus as possible. They take antibiotics daily to help the everyday intruders that their bodies are unable to defend against. They take many medications to help with eating and reflux, and SO much more. They have many things that break down and do not work because of all the other things attacking them. Someone with CF fights daily to live half of the projected life the rest of us are said to expect. Most people with CF are used to coughing, shortened breathing, tightness and shooting pains in the chest, gas, bloating, indigestion and stomach pain, and way more than I could ever describe. They are plagued with enough things that many of us would take off work for, and as time goes on forces them to not be able to work with as much ease, whether its because of frequent sickness, long hospitalizations, employers not understanding CF and treating them as if they are liers or lazy. Also many adult CF'ers struggle with medical insurance and often times are not covered for many things. CF is not taking as serious as cancer or other more understood or common medical conditions. People talk alot about Cancer because it is well known, anyone you meet most likely knows one or more people who have struggled with, died from or survived cancer. Cancer is caused from so many things and in so many parts of the body, cancer can hit you at any age and can take you at any age. You can suffer for years or even die before being diagnosed with cancer. It is Horrible, I have lost many people I know to cancer. For someone to come to you and say my child has cancer everyone knows what it is and everyone sympathises and is there to rally and support. When you tell someone my child has CF, even if they stay to listen to what CF is in the short, they say that's to bad and walk on more often than not. Now I have a hard time with this because it is a double edge sword. Do I want more people to know about CF so it is taken serious and understood as the horrible destructive disease that is genetic and incurable...yes, but at what cost is that gonna be? I do not wish there were more people with CF so others can understand it, So what is a mom to do? How do I save my child without wishing more people to suffer? How do I get people to understand and care even though it doesn't affect them in any way?
CF does suck, it sucks everyday from day one from a medical and physical standpoint for those who suffer from it and it sucks for those who love someone with it to not be able to take it away or control the inevitable. So we all just focus on the positive things and carry on, we have all learned things about life and how precious it is. We all know that CF doesn't control your soul, your heart, your faith or your you-i-ness, only you control that. This is why the most common statement is found.."boy I never knew they were really that sick" because it is just a body, a very earthly thing that will not come with them in Heaven. They are not sick, their body is.
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