This is short and sweet. I know so many of you have been praying for me and I haven't updated everyone on everything that's been going on. I'm gong to quickly update everyone and tell you something exciting that I'm endeavoring to do after much thought and prayer!
Kevin and I are driving to Mayo Clinic in Rochester, Minnesota this Saturday. We are excited to have some help, but we are scared that the doctors won't know why things are happening and progressing. I'm fully relying on God and that HE IS IN CONTROL. Worrying or fretting doesn't do anything. I can either pray or worry, but I refuse to do both!
Anyway, I wanted to tell you that I'm leaving to go to Mayo, praise the Lord. My doctors here along with Hopkins are all working together to try to see what is actually the best course of treatment. I'm glad they are all working together as a team. Mayo initially turned me down and said that if John's Hopkins couldn't fix me, they wouldn't be able to, either, but the doctors here and at Hopkins explained how sick I am and how I'm getting worse and not better, they quicly decided to see me, which I am grateful for, but I know it's everyone's prayers that got me in there! I know how God works. it's unbelievable how God worked it all out. We were afraid of not having enough money to pay for the trip there and back plus another trip to Dallas tomorrow.But God provided the exact amount we needed and God is just so good. I am so thankful for all God has done in my life.
Life is good. God is good, no matter what. Even in trials, joy in life comes from within. Sure you can have days that are horrible and you don't understand where God is, but I promise you, clinging to HOPE, FAITH, LOVE and the fact that God is our biggest fan, wanting us to press on. He will provide JUST WHAT WE NEED. Not more than what we need, just what we need. ALSO cling to the Joy He promises. The Joy of the Lord can be our strength if we well HIM have full reign in our lives.
I say that to say that I'm not going to be using blogspot much anymore. I'm going to try to get my old blogs over to the new WEBSITE I am launching. The website will be more like a blog/website that I hope to write in several times a week. I want to share my heart, devotionals, my health issues, and what God is teaching me. I hope to have the web site up THIS NEXT WEEK. So pray that I figure it all out and that you all will enjoy it and pass it on. I will share the URL and everything ELSE as soon as it's up.
I love you friends and family! God is my healer, my strength, and when you look at me, please don't look at me as someone who is so sick and struggles. Please look at me as someone who has so much love in their life, and that God is so good to me and I'm so happy and the Joy of the Lord is my strength. These sicknesses are temporal I can't wait for my heavenly body!!!
Thanks again, and look at my website when I share its name and everything with you!!! :)
Love, Ami :)
Sunday, March 24, 2013
Tuesday, February 5, 2013
I'm going to be okay!
I have been writing a whole lot ever since I got home from my stay in Virginia. I have been writing in my journals, pouring out my feelings. I don’t quite know what to say to people sometimes, so I just write and it’s cathartic, almost therapeutic and after I write, I just shut them and don’t have to re-read them. Sometime maybe I will, but not now. Things are too raw.
I have been thinking a lot of Love recently. It’s the month of February and I love this month. Valentine’s month. When I was a little girl, I remember my daddy one Valentine’s Day giving me a pair of big chocolate lips. He had left them on the table in the kitchen for me to see before going off to school. I thought so much of that. It’s something that he did that I’m sure he doesn’t really remember…or maybe he does, but I remember and I loved those yummy lips. And my father in law…he’s so funny. I remember him calling on Valentines, and every year, he would come over with a box of chocolates for me. No matter what. I was his Valentine. I love my father and father in law so much.
I can’t eat those chocolates anymore. I guess I could, but it wouldn’t be pretty. I get so sick anymore at anything. I am very fortunate that I have a vent tube, so tonight I ate a few crackers, and afterwards I got so sick, I threw up a little bit, but I quickly drained from my tube and I felt better. Some people might think that’s gross or too much to share. But that’s my life.
I went to my local stomach doctor’s today. She’s wonderful. Dr. Laura Balmain, and she’s a Christian and she would do anything and everything to make me feel better. She told me how strong my faith is and how my testimony is so important and that she’s so proud of me. I was so thankful for her kind words. She told me that she’s really never had a patient that is as young as me on a feeding machine around the clock. She basically just asked me, “So how are you doing with all of this.”
Kevin was sitting next to me. I guess the question caught me by surprise. I mean, I wasn’t expecting that. I sometimes make myself clinical…I just say what’s happening, what I need, and what I need them to do to help. Doctors usually don’t ask you how you’re handling your diagnosis. I guess she could sense I was weak, pale and frail. I don’t know.
But when she asked me that question, the tears like a flood, just came. I guess I’m not coping as well as I thought I was. It’s funny. I’ll come home, and I’ll look in the pantry and see what I can have. Nothing. There’s nothing. I can drink some things, but even that makes me sick. Right now, Ritz Crackers are my nemesis. They call my name and whisper, “Eat me…just one.” So when I do, they always have to be vented and it’s an hour of agonizing time for a few bites of soggy crackers that I soak in salty broth. Not appetizing, but when it’s all you can have…it becomes like a steak or a pizza. I really want a pizza.
Anyway, I cried. Kevin held my hand. I forget sometimes that he’s right there. That’s where love comes into this. Sometimes the people that we love the most get the short end of the stick. Here he is, the one who lives with me. The one who watches me suffer as I stare into the pantry, as if some miracle food is going to pop out at me and say, “Here! I won’t make you throw up!”
It’s really funny. I tend to get frustrated the most at Kevin because I think he should know….he should know what bothers me and doesn’t. He’s not a mind reader, and I can tell, he just wants me to be truthful if something bothers him or not. He doesn’t want me to have food around me if it bothers me. It’s weird, sometimes it does and sometimes it doesn’t. But Kevin just wants to make life easier for me. He’ll do anything for me. He’d literally do anything he could to make my life a little more comfortable.
I know I’m rambling on a bit, but I guess I’ve been in a funk since I’ve been home these last few weeks. I didn’t realize how sick I am. The doctors at Hopkins said I was one of the 2 sickest that she had, and Dr. Balmain said that I’m pretty much her one and only that has round the clock enteral (Tube) feedings.
Part of what has had me so down is that I have voluntarily given up the privilege to drive, at least for a while. I am on serious meds and I have so many adrenal problems, that if I were to be driving and I hit someone or hurt anyone, I would be so devastated, and I couldn’t face that along with the fact that it could ruin us. So I am at the mercy of Kevin, who is wonderful, but he works a lot. So far he and my father in law have taken me to all of my appointments. I am so very blessed. It’s hard not to be able to hop in the car and go get my hair cut. It’s just one of those things. I know I have people that will take me places, and I know I have great friends, and don’t be afraid…you will be getting calls! I promise.
I’m not depressed or FAITHLESS. I have so much faith and I believe in my healing. I don’t want anyone to think that in any way. I’m just sharing feelings. So please don’t read this and think that I need some kind of intervention or help. I’m fine…just sharing my heart.
But just in the midst of the grumpy storm today, I heard God calling me, “Just pick up your Bible and read.” I had determined today that I wasn’t going to. I was just mad and I wasn’t going to read. But I kept feeling this prodding, so I did. It was Psalm 68:1-35 that was part of my daily reading. Here are some verses that I read and IMMEDIATELY, I knew that they were for me. Verse 3: May the righteous be glad and rejoice before God: May they be happy and joyful; Verse 19: Praise be to the Lord, to God our Savior, who Daily bears our burdens; Verse28 Summon your power, O God, show us your strength, O God, as you have done before.”
Now if those verses weren’t for me and weren’t for this awful day of sorrow and anger, I don’t know how I would have made it through. I usually do my devotional time first thing in the morning, but today got all twisted around. I’m glad I did get all twisted around because I needed those verses TONIGHT. I needed to go to sleep and know that God is going to show me His strength and give me His when I have none. I needed to know that I have to praise Him. He is good. There is too much good to be grumpy.
Now how does this all relate back to love and what I’m supposed to say about love. I look at it this way. God loved me so much today to let me have my temper tantrum, to cry at the doctor’s office, to feel frustrated because I can’t drive, to get angry when something didn’t go my way, and then still give me a gift…the gift of his presence. The gift of His Words of comfort and peace. The fact is that I can have those words any time. I just have to read them.
I love God, I love my family and I love my friends. I love the love I feel when I get messages from you all. I am sorry I don’t respond in good time. I’m not on the computer much. I’m really trying to write letters and I’m going to start doing some more writing that will take time. Just know that I am thankful for your love and friendship. My friends are so precious to me! Thanks for reading my blog!!!
I have been thinking a lot of Love recently. It’s the month of February and I love this month. Valentine’s month. When I was a little girl, I remember my daddy one Valentine’s Day giving me a pair of big chocolate lips. He had left them on the table in the kitchen for me to see before going off to school. I thought so much of that. It’s something that he did that I’m sure he doesn’t really remember…or maybe he does, but I remember and I loved those yummy lips. And my father in law…he’s so funny. I remember him calling on Valentines, and every year, he would come over with a box of chocolates for me. No matter what. I was his Valentine. I love my father and father in law so much.
I can’t eat those chocolates anymore. I guess I could, but it wouldn’t be pretty. I get so sick anymore at anything. I am very fortunate that I have a vent tube, so tonight I ate a few crackers, and afterwards I got so sick, I threw up a little bit, but I quickly drained from my tube and I felt better. Some people might think that’s gross or too much to share. But that’s my life.
I went to my local stomach doctor’s today. She’s wonderful. Dr. Laura Balmain, and she’s a Christian and she would do anything and everything to make me feel better. She told me how strong my faith is and how my testimony is so important and that she’s so proud of me. I was so thankful for her kind words. She told me that she’s really never had a patient that is as young as me on a feeding machine around the clock. She basically just asked me, “So how are you doing with all of this.”
Kevin was sitting next to me. I guess the question caught me by surprise. I mean, I wasn’t expecting that. I sometimes make myself clinical…I just say what’s happening, what I need, and what I need them to do to help. Doctors usually don’t ask you how you’re handling your diagnosis. I guess she could sense I was weak, pale and frail. I don’t know.
But when she asked me that question, the tears like a flood, just came. I guess I’m not coping as well as I thought I was. It’s funny. I’ll come home, and I’ll look in the pantry and see what I can have. Nothing. There’s nothing. I can drink some things, but even that makes me sick. Right now, Ritz Crackers are my nemesis. They call my name and whisper, “Eat me…just one.” So when I do, they always have to be vented and it’s an hour of agonizing time for a few bites of soggy crackers that I soak in salty broth. Not appetizing, but when it’s all you can have…it becomes like a steak or a pizza. I really want a pizza.
Anyway, I cried. Kevin held my hand. I forget sometimes that he’s right there. That’s where love comes into this. Sometimes the people that we love the most get the short end of the stick. Here he is, the one who lives with me. The one who watches me suffer as I stare into the pantry, as if some miracle food is going to pop out at me and say, “Here! I won’t make you throw up!”
It’s really funny. I tend to get frustrated the most at Kevin because I think he should know….he should know what bothers me and doesn’t. He’s not a mind reader, and I can tell, he just wants me to be truthful if something bothers him or not. He doesn’t want me to have food around me if it bothers me. It’s weird, sometimes it does and sometimes it doesn’t. But Kevin just wants to make life easier for me. He’ll do anything for me. He’d literally do anything he could to make my life a little more comfortable.
I know I’m rambling on a bit, but I guess I’ve been in a funk since I’ve been home these last few weeks. I didn’t realize how sick I am. The doctors at Hopkins said I was one of the 2 sickest that she had, and Dr. Balmain said that I’m pretty much her one and only that has round the clock enteral (Tube) feedings.
Part of what has had me so down is that I have voluntarily given up the privilege to drive, at least for a while. I am on serious meds and I have so many adrenal problems, that if I were to be driving and I hit someone or hurt anyone, I would be so devastated, and I couldn’t face that along with the fact that it could ruin us. So I am at the mercy of Kevin, who is wonderful, but he works a lot. So far he and my father in law have taken me to all of my appointments. I am so very blessed. It’s hard not to be able to hop in the car and go get my hair cut. It’s just one of those things. I know I have people that will take me places, and I know I have great friends, and don’t be afraid…you will be getting calls! I promise.
I’m not depressed or FAITHLESS. I have so much faith and I believe in my healing. I don’t want anyone to think that in any way. I’m just sharing feelings. So please don’t read this and think that I need some kind of intervention or help. I’m fine…just sharing my heart.
But just in the midst of the grumpy storm today, I heard God calling me, “Just pick up your Bible and read.” I had determined today that I wasn’t going to. I was just mad and I wasn’t going to read. But I kept feeling this prodding, so I did. It was Psalm 68:1-35 that was part of my daily reading. Here are some verses that I read and IMMEDIATELY, I knew that they were for me. Verse 3: May the righteous be glad and rejoice before God: May they be happy and joyful; Verse 19: Praise be to the Lord, to God our Savior, who Daily bears our burdens; Verse28 Summon your power, O God, show us your strength, O God, as you have done before.”
Now if those verses weren’t for me and weren’t for this awful day of sorrow and anger, I don’t know how I would have made it through. I usually do my devotional time first thing in the morning, but today got all twisted around. I’m glad I did get all twisted around because I needed those verses TONIGHT. I needed to go to sleep and know that God is going to show me His strength and give me His when I have none. I needed to know that I have to praise Him. He is good. There is too much good to be grumpy.
Now how does this all relate back to love and what I’m supposed to say about love. I look at it this way. God loved me so much today to let me have my temper tantrum, to cry at the doctor’s office, to feel frustrated because I can’t drive, to get angry when something didn’t go my way, and then still give me a gift…the gift of his presence. The gift of His Words of comfort and peace. The fact is that I can have those words any time. I just have to read them.
I love God, I love my family and I love my friends. I love the love I feel when I get messages from you all. I am sorry I don’t respond in good time. I’m not on the computer much. I’m really trying to write letters and I’m going to start doing some more writing that will take time. Just know that I am thankful for your love and friendship. My friends are so precious to me! Thanks for reading my blog!!!
Friday, February 1, 2013
Changing Attitudes and Fruit of the Spirit: LOVE
So, it's the beginning of February, and if I'm honest with everyone, It's been kind of a frustrating past couple of months. Really...if I'm terribly honest...years. But I'm done with that. I'm done with the past. I'm looking on to the future with Christ and the future as I walk down this path of life. This BEAUTIFUL, Scary, Strange, but totally Worth it Life.
A beautiful friend gave me the most beautiful 2013 journal with a card that told me to start writing in February and seeing the joy and miracles that will happen this year.
I had been sulking quite a bit since my diagnosis and chronic troubles that are plaguing my quality of life. So when she gave me this journal, I decided that I would do just that...Chronicle this year that God is going to do some things in my life. I'm carrying my journal with me wherever I go so that I can record the things God wants to teach me.
It kindof hit me when the Lord reminded me of a promise I made to Him. I can't remember the exact date I promised Him this, but I said these words to the Lord one day not so long ago. I said, "Lord, I'm going to serve You in Good and Bad, and in Sunshine and in Shade."
Well, I haven't been doing such a good job.
So I'm trying to turn the corner, and so I'm going to make this short and sweet. I'm going to take the rest of the year and focus on a fruit of the spirit that the Bible mentions, and I'm really going to think about it, blog about it, mention it, study it, and really try to get myself thinking more about my promise to God. I can't do a lot, but I can write and share my life and what helps me as I go through this trial. I don't know about you, but I can't relate with people that have perfect lives. I need to see scars. I need to see people that fail, but that pick themselves up again. So as I write as much as I can, I promise to be honest. This month of course is February, so I'm going to talk about love a lot. I may not write every day, but I'll be writing so be checking back...
AND if you notice on facebook, I'll be posting things about the fruit of the spirit, and mostly about love this month...
Thanks! And thanks for the prayers. I can tell my friends and family are praying for me because I am feeling stronger spiritually.
Galatians 5:22-23 NIV But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control. Against such things there is no law.
A beautiful friend gave me the most beautiful 2013 journal with a card that told me to start writing in February and seeing the joy and miracles that will happen this year.
I had been sulking quite a bit since my diagnosis and chronic troubles that are plaguing my quality of life. So when she gave me this journal, I decided that I would do just that...Chronicle this year that God is going to do some things in my life. I'm carrying my journal with me wherever I go so that I can record the things God wants to teach me.
It kindof hit me when the Lord reminded me of a promise I made to Him. I can't remember the exact date I promised Him this, but I said these words to the Lord one day not so long ago. I said, "Lord, I'm going to serve You in Good and Bad, and in Sunshine and in Shade."
Well, I haven't been doing such a good job.
So I'm trying to turn the corner, and so I'm going to make this short and sweet. I'm going to take the rest of the year and focus on a fruit of the spirit that the Bible mentions, and I'm really going to think about it, blog about it, mention it, study it, and really try to get myself thinking more about my promise to God. I can't do a lot, but I can write and share my life and what helps me as I go through this trial. I don't know about you, but I can't relate with people that have perfect lives. I need to see scars. I need to see people that fail, but that pick themselves up again. So as I write as much as I can, I promise to be honest. This month of course is February, so I'm going to talk about love a lot. I may not write every day, but I'll be writing so be checking back...
AND if you notice on facebook, I'll be posting things about the fruit of the spirit, and mostly about love this month...
Thanks! And thanks for the prayers. I can tell my friends and family are praying for me because I am feeling stronger spiritually.
Galatians 5:22-23 NIV But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, 23 gentleness and self-control. Against such things there is no law.
Wednesday, January 30, 2013
Update on 1/30
I wanted to update everyone on what is happening. I have not been much on Facebook or checking things. It's just something that I'm not going to be able to do all of time. I will do the best I can. But I'm letting you know an update on things.
I made it home here to Texas on Saturday, 1/26. I am very frail and fragile. I have my feeding tubes, which are the way I am getting my nutrition. Drinking and eating any substances make me feel like throwing up and vomiting. I am allowed to vent, so sometimes I will eat a few crackers or sip some milk, and when I feel that sickening feeling hitting, I just vent. I am not supposed to vent much, however, because it is just like vomiting and you lose your electrolytes and they are imbalanced. So I am trying to stay on my feedings as much as possible and occasionally I will try to eat a few crackers, but I always end up venting them out, so it's hard and I just feel so weak and I'm trying to stay strong but this is hard.
I am having home health nurses check on me once a week to make sure I am not dehydrated. I can't drive much any more...not because I can't, but because I just don't want to be on the road with the medications that I'm on. I want to be responsible and I want to be careful. So I'm reliant on Kevin and his family, and I am so thankful for them.
I am so very emotional about things. The doctors at Hopkins basically talked with me and told me that as far as they are concerned, I am one of their 2 sickest patients (in my doctor's practice). They are so concerned that the issues I have are so severe but are really complex. They said that if they were to do surgery, they would likely take out my stomach and my pancreas, but there is NO guarantee my pain would be gone. In fact, it could make it worse. She told me point blank, "You will never eat normally again. You are not normal, and you will not eat again."
Hearing that was hard, but hearing the rest of the conversation was worse. They basically think that I have some other major disease processes that are contributing to the fact that my organs on the inside of my body are calcifying and that there are some strange labs and symptoms I am having. They want to see how I do over the next few months and then see where we are in March/April. They also want my doctors here who know me well, to look at my autoimmune conditions. They feel that I could have some underlying serious disease process that is causing so much of what I am going through.
....So, the doctors kindof want me to go to the Mayo Clinic to stay for a week and go through the wringer again but not leave without a diagnosis. I still may never eat again, but I may know why I am going downhill so fast. I have lost so much weight and stuff. I just am so weak.
Saying that, I don't know if Kevin and I are going to go to the Mayo Clinic or not. Honestly, I ask you to pray for the decision. It will be a lot of money out of pocket that quite honestly we just don't have. I also know that even if I get a diagnosis, the treatment is likely to be the same, so I am not sure. It may not be. I just need the wisdom.
In addition, I am tired. I am tired of fighting this disease. I am working hard on staying positive and strong, but emotionally, I am weak. I need God's power and I need encouragement. I have been just so sick, literally, I can't get on the computer to answer emails and such. I hope you all understand.
I know that this post isn't very upbeat. It just seems like things are hard. My mom is in surgery for gallbladder removal. That was an emergency. Several people I love are battling cancer, and that is weighing on my mind. I just feel weak, but wanted to update everyone.
Please keep us in your prayers. If I need and should go to the Mayo Clinic, please pray for God to provide a way and not only that, but a peace about it.
Thank you for all of your prayers. I could never make it without them, and I feel them daily. Thank you, too, for understanding how I physically feel and that I am not responding the way that I usually would.
Your friendships and love and prayers get me through. And God is Good. He will not fail me. This is going to be used for His glory always.
Love you. and please pray. Soon I'll have better updates...
Ami :)
I made it home here to Texas on Saturday, 1/26. I am very frail and fragile. I have my feeding tubes, which are the way I am getting my nutrition. Drinking and eating any substances make me feel like throwing up and vomiting. I am allowed to vent, so sometimes I will eat a few crackers or sip some milk, and when I feel that sickening feeling hitting, I just vent. I am not supposed to vent much, however, because it is just like vomiting and you lose your electrolytes and they are imbalanced. So I am trying to stay on my feedings as much as possible and occasionally I will try to eat a few crackers, but I always end up venting them out, so it's hard and I just feel so weak and I'm trying to stay strong but this is hard.
I am having home health nurses check on me once a week to make sure I am not dehydrated. I can't drive much any more...not because I can't, but because I just don't want to be on the road with the medications that I'm on. I want to be responsible and I want to be careful. So I'm reliant on Kevin and his family, and I am so thankful for them.
I am so very emotional about things. The doctors at Hopkins basically talked with me and told me that as far as they are concerned, I am one of their 2 sickest patients (in my doctor's practice). They are so concerned that the issues I have are so severe but are really complex. They said that if they were to do surgery, they would likely take out my stomach and my pancreas, but there is NO guarantee my pain would be gone. In fact, it could make it worse. She told me point blank, "You will never eat normally again. You are not normal, and you will not eat again."
Hearing that was hard, but hearing the rest of the conversation was worse. They basically think that I have some other major disease processes that are contributing to the fact that my organs on the inside of my body are calcifying and that there are some strange labs and symptoms I am having. They want to see how I do over the next few months and then see where we are in March/April. They also want my doctors here who know me well, to look at my autoimmune conditions. They feel that I could have some underlying serious disease process that is causing so much of what I am going through.
....So, the doctors kindof want me to go to the Mayo Clinic to stay for a week and go through the wringer again but not leave without a diagnosis. I still may never eat again, but I may know why I am going downhill so fast. I have lost so much weight and stuff. I just am so weak.
Saying that, I don't know if Kevin and I are going to go to the Mayo Clinic or not. Honestly, I ask you to pray for the decision. It will be a lot of money out of pocket that quite honestly we just don't have. I also know that even if I get a diagnosis, the treatment is likely to be the same, so I am not sure. It may not be. I just need the wisdom.
In addition, I am tired. I am tired of fighting this disease. I am working hard on staying positive and strong, but emotionally, I am weak. I need God's power and I need encouragement. I have been just so sick, literally, I can't get on the computer to answer emails and such. I hope you all understand.
I know that this post isn't very upbeat. It just seems like things are hard. My mom is in surgery for gallbladder removal. That was an emergency. Several people I love are battling cancer, and that is weighing on my mind. I just feel weak, but wanted to update everyone.
Please keep us in your prayers. If I need and should go to the Mayo Clinic, please pray for God to provide a way and not only that, but a peace about it.
Thank you for all of your prayers. I could never make it without them, and I feel them daily. Thank you, too, for understanding how I physically feel and that I am not responding the way that I usually would.
Your friendships and love and prayers get me through. And God is Good. He will not fail me. This is going to be used for His glory always.
Love you. and please pray. Soon I'll have better updates...
Ami :)
Tuesday, January 8, 2013
Update on my last month
Today is January 9th. It’s been the strangest of the holiday seasons that I can remember. I try to stop and think about what happened on which day, and while I’m sure the bills for everything will come in, I’ll just update you one what has been happening and give you what I know about the present and my outlook for the future. I will keep this the short version, for those of my friends who are in my predicament or want advice, outlook, doctor’s names or anything, you know I’ll help you however I can.
I came by fliight in Haste at the beginning of December. Vomiting, I had been bearing 16 weeks total of back and fourth nasal j tubes that were switched back and forth. I was miserable but sicker than ever. The doctor took one look at me and got me into the hospital for a permanent tube that would allow me to vent and to feed. It even has an inflatable balloon to keep it all in place. Anyway, I got the first tube put in with the hopes to go home for Christmas, but we got the devastating news that one of the very best people I know and I wouldn’t just say that because he’s my brother in law Jimmy Colaciello, was diagnosed with Oral Cancer. He needed surgery on the 20th, and while it was successful, his recovery is grueling and tough. Its these things in life you don’t think will happen, but there’s something about James Albert Colaciello that makes you love him. You root for him, and you know he’s going to beat this, and I guarantee he’s going to be better than before. Please pray for him. He has a trachea right now and he’ll have to go through some radiation and chemo. His family has been so great and my family just loves him so much. Cherie and the kids are strong and people have blessed over and abundantly. They have felt such love from God and their own families and church families and friends too. It’s unbelievable the love of the heart and the Love God means for us to show one another. Pray specifically for Jim, if you would for his swallowing and eating and learning all of those things over. Then the chemo and radiation. Please, ask God to do a miracle and make it painless, easy and a breeze. God will do that. I know it. He’s so special and so is Cherie and the Kids. So are Jim’s siblings and parents and whole family.
I felt so terrible because As Jim was in surgery Dec. 20th, I was here vomiting up nothing because that’s what I eat. Nothing. I just vomited Bile after Bile. I was sick and my muscles weren’t right. I was scared. Kevin flew into town immediately. I ended up having an emergency appendectomy here in Winchester, Va., because I was too sick I couldn’t make it to Hopkins because of the pain. So once I was out of Winchester after I had serious complications, I ended up at Hopkins because the tube I had placed had been broken in Surgery most likely in Winchester. So while at Hopkins, another tube malfunctioned, and to make a long story short was replaced and I recovered with new orders and new tube feeding instructions and I’m going to have to get stronger. I am using them around the clock until I get up to my goal feeds.
My pancreas is okay for now we think as long as I don’t eat. My stomach is very weak and I am not tolerating much of anything but pills and feeds and some water and tea at times. When I feel stronger, I drink a little juice or a swig of soda, but not much. I treat myself with these swigs of things when I can. The doctors still have hope In the pacemaker in the future, they have the hope that if I do get stronger, I will be a candidate to maybe get a total gastrectomy (stomach removal ) and possibly a pancreatectomy if they decide to do a surgery so severe.
Friends, for so long, I have been crying, “Please, fix me.” I’ve cried that to God, of course, an I’ve cried that to the doctors, and I’ve cried that to everyone that I thought knew an answer. In all of those cries, I’ve gotten the answer clearly, and I feel so strongly that God is healing me in His time. My heart, my anger, my agony, my relationships, my body. Everything. God has opened my heart and he’s healing me. What I thought was a quick fix it problem in 2009 has turned into this journey that is unbelieveably frustrating for not only myself, but for the ones that Love me and those that need me (believe it or not) for their sanity and survival. I have learned how to love, be a better person, be a better friend, be a woman that wants to give more and pray harder, a person who finds pleasure in the little joys in life. I do miss what was at times as a stronger person, but my strength is there, just not as outspoken as I once was, which isn’t all bad. I love who I am. I love who God has turned me into. I love God bringing Kevin so close to me. I could spend all day in his presence and never want to stop holding his hand.
Now please don’t take this wrong…I pray for healing. Oh, what a day that will be when God does that for me, and for my dear Pastor Lanell who is battling cancer and my Jimmy Colaciello who craves wholeness. I know God will do it. I pray it’s today. Until that second, I’m living my life how I know how I’ve had to over the course of these 12 years.
I’d be remiss to say I am anything without Kevin. Or my mom and Dad and Kevin’s mom and dad who have each literally cared for me. Or my sisters and sisters in laws and those who have reached out in prayers, over facebook or just heard about me and prayed. Like the Mauk family, and Barb Palmer and Mrs. Grimm, both beautiful women I know their daughters, and they have prayed ever so faithfully, and the friends I’ve met and pray I get to meet. I pray for so many of you…Karen and Pete and all of you...I can’t even begin to mention you all. I have a book and the names just get added and added. Thank you friends for adding me to your lists of those to prayer for. This trip alone, I got to share my faith with 2 nurses…clear plans of the gospel, and I even got to leave them A Church on the Rock tract..
Thank you Kevin for being the love of my life. It was a rough 1212. The best thing that happened to me personally was drawing closer to God, to Kevin and meeting our March twins, Lilliana Grace and Hollis Logan Hillman Jr. They are my joy…I get to see them tomorrow, thank God. And the other 10 nieces and newphews are pretty awesome, too….Mauri Grace, yearbook editor and Double Major at Quachita Baptist University, Caleb Sparks, accepted in the engineering school at UNT, and Evan Beechem, smartest kid on a computer and boyscout extraroirdinare who placed first in the state last year in his project, and Ethan Beechem….what else to say…he’s reading, writing, and he reminds me of the 6 year old version of Betsy and Robert’s Ben who can say all his alphabets and he’s not even 2 yet, and yes, I’m a proud Aunt…the Colaciello kids are just so good and have been so strong. Luke has the heart of Gold and I’m always telling him to pick a nice GOOD Christian girl! Lauren is beautiful, Nate is amazing and beside Darla’s Savannah and Alayna, those three are best friends.
To all of those I haven’t talked to in a while…Know why….it’s just because I’m not well now. Please call. I’ll answer, sometimes, I just can’t always call. Thank you for loving me. I’m going to recuperate and get better and in just a few months be back to the old Ami!
Never forget how Good God is and the beauty you can find in life. I refuse to let this “Disease” take what God meant for a blessing. So I am blessed! Sorry for rambling but I hope you enjoy!!!!!
Love always,
Ami
Proverbs 22:1
AND I SHOULD HAVE SAID THIS VERY FIRST: HAPPY BIRTHDAY TO THE GREATEST MOM ON THE EARTH, CONNIE WEBB!!!!
I came by fliight in Haste at the beginning of December. Vomiting, I had been bearing 16 weeks total of back and fourth nasal j tubes that were switched back and forth. I was miserable but sicker than ever. The doctor took one look at me and got me into the hospital for a permanent tube that would allow me to vent and to feed. It even has an inflatable balloon to keep it all in place. Anyway, I got the first tube put in with the hopes to go home for Christmas, but we got the devastating news that one of the very best people I know and I wouldn’t just say that because he’s my brother in law Jimmy Colaciello, was diagnosed with Oral Cancer. He needed surgery on the 20th, and while it was successful, his recovery is grueling and tough. Its these things in life you don’t think will happen, but there’s something about James Albert Colaciello that makes you love him. You root for him, and you know he’s going to beat this, and I guarantee he’s going to be better than before. Please pray for him. He has a trachea right now and he’ll have to go through some radiation and chemo. His family has been so great and my family just loves him so much. Cherie and the kids are strong and people have blessed over and abundantly. They have felt such love from God and their own families and church families and friends too. It’s unbelievable the love of the heart and the Love God means for us to show one another. Pray specifically for Jim, if you would for his swallowing and eating and learning all of those things over. Then the chemo and radiation. Please, ask God to do a miracle and make it painless, easy and a breeze. God will do that. I know it. He’s so special and so is Cherie and the Kids. So are Jim’s siblings and parents and whole family.
I felt so terrible because As Jim was in surgery Dec. 20th, I was here vomiting up nothing because that’s what I eat. Nothing. I just vomited Bile after Bile. I was sick and my muscles weren’t right. I was scared. Kevin flew into town immediately. I ended up having an emergency appendectomy here in Winchester, Va., because I was too sick I couldn’t make it to Hopkins because of the pain. So once I was out of Winchester after I had serious complications, I ended up at Hopkins because the tube I had placed had been broken in Surgery most likely in Winchester. So while at Hopkins, another tube malfunctioned, and to make a long story short was replaced and I recovered with new orders and new tube feeding instructions and I’m going to have to get stronger. I am using them around the clock until I get up to my goal feeds.
My pancreas is okay for now we think as long as I don’t eat. My stomach is very weak and I am not tolerating much of anything but pills and feeds and some water and tea at times. When I feel stronger, I drink a little juice or a swig of soda, but not much. I treat myself with these swigs of things when I can. The doctors still have hope In the pacemaker in the future, they have the hope that if I do get stronger, I will be a candidate to maybe get a total gastrectomy (stomach removal ) and possibly a pancreatectomy if they decide to do a surgery so severe.
Friends, for so long, I have been crying, “Please, fix me.” I’ve cried that to God, of course, an I’ve cried that to the doctors, and I’ve cried that to everyone that I thought knew an answer. In all of those cries, I’ve gotten the answer clearly, and I feel so strongly that God is healing me in His time. My heart, my anger, my agony, my relationships, my body. Everything. God has opened my heart and he’s healing me. What I thought was a quick fix it problem in 2009 has turned into this journey that is unbelieveably frustrating for not only myself, but for the ones that Love me and those that need me (believe it or not) for their sanity and survival. I have learned how to love, be a better person, be a better friend, be a woman that wants to give more and pray harder, a person who finds pleasure in the little joys in life. I do miss what was at times as a stronger person, but my strength is there, just not as outspoken as I once was, which isn’t all bad. I love who I am. I love who God has turned me into. I love God bringing Kevin so close to me. I could spend all day in his presence and never want to stop holding his hand.
Now please don’t take this wrong…I pray for healing. Oh, what a day that will be when God does that for me, and for my dear Pastor Lanell who is battling cancer and my Jimmy Colaciello who craves wholeness. I know God will do it. I pray it’s today. Until that second, I’m living my life how I know how I’ve had to over the course of these 12 years.
I’d be remiss to say I am anything without Kevin. Or my mom and Dad and Kevin’s mom and dad who have each literally cared for me. Or my sisters and sisters in laws and those who have reached out in prayers, over facebook or just heard about me and prayed. Like the Mauk family, and Barb Palmer and Mrs. Grimm, both beautiful women I know their daughters, and they have prayed ever so faithfully, and the friends I’ve met and pray I get to meet. I pray for so many of you…Karen and Pete and all of you...I can’t even begin to mention you all. I have a book and the names just get added and added. Thank you friends for adding me to your lists of those to prayer for. This trip alone, I got to share my faith with 2 nurses…clear plans of the gospel, and I even got to leave them A Church on the Rock tract..
Thank you Kevin for being the love of my life. It was a rough 1212. The best thing that happened to me personally was drawing closer to God, to Kevin and meeting our March twins, Lilliana Grace and Hollis Logan Hillman Jr. They are my joy…I get to see them tomorrow, thank God. And the other 10 nieces and newphews are pretty awesome, too….Mauri Grace, yearbook editor and Double Major at Quachita Baptist University, Caleb Sparks, accepted in the engineering school at UNT, and Evan Beechem, smartest kid on a computer and boyscout extraroirdinare who placed first in the state last year in his project, and Ethan Beechem….what else to say…he’s reading, writing, and he reminds me of the 6 year old version of Betsy and Robert’s Ben who can say all his alphabets and he’s not even 2 yet, and yes, I’m a proud Aunt…the Colaciello kids are just so good and have been so strong. Luke has the heart of Gold and I’m always telling him to pick a nice GOOD Christian girl! Lauren is beautiful, Nate is amazing and beside Darla’s Savannah and Alayna, those three are best friends.
To all of those I haven’t talked to in a while…Know why….it’s just because I’m not well now. Please call. I’ll answer, sometimes, I just can’t always call. Thank you for loving me. I’m going to recuperate and get better and in just a few months be back to the old Ami!
Never forget how Good God is and the beauty you can find in life. I refuse to let this “Disease” take what God meant for a blessing. So I am blessed! Sorry for rambling but I hope you enjoy!!!!!
Love always,
Ami
Proverbs 22:1
AND I SHOULD HAVE SAID THIS VERY FIRST: HAPPY BIRTHDAY TO THE GREATEST MOM ON THE EARTH, CONNIE WEBB!!!!
Monday, December 17, 2012
Done with 2012
I don’t know what it is about 2012.
I won’t be sad to see it gone.
I’ve seen people I love, struggle financially, emotionally and most of all, physically in ways that my human mind can’t stand.
Most people know the basics of my story. How since January of 2010, I wasn’t able to eat and I had feeding tubes. Then after meeting great doctors at John’s Hopkins, they had ideas and basically gave me some hope and I was able to eat from April 10th to mid July of this year. I began to get sick again with pancreatitis and gastroparesis and everything else. So after months of NJ tubes (tubes that go from your nose, down your throat, and into your small intestine), the doctors finally decided that they would have to intervene because I had lost too much weight. I have lost so much weight (about 80 pounds this year and 40 last year), I have a lot of excess skin. If the skin was gone, the doctor said that my body is starving in a way because I can’t tolerate the nutrition I need. I know that and I am feeding around the clock on this machine to remedy things, but because of the condition of my stomach and the constant nausea, it’s really hard to go places, do things and not feel bad or totally worn out. To make a complicated situation, well, still complicated , I am actually not going to be able to eat normally again most likely. It’s hard for me to say that because I have had lots of hopes and even success for 2 months. But now it’s worse than it’s ever been. I don’t want to be pessimistic, but the doctors these days don’t even want to give me false hope. My stomach is in such ill-repair, it might be good to take it out along with the pancreas. I just don’t know, quite honestly. I’ll know more at my appointment in January. Right now I am dealing with the realization that I can’t eat and this is just how it is, and coming to terms with that is hard. It’s not such a natural thing not to eat.
Daily in my life, I choose to be joyful. I have my moments of hurt, pain and isolation. I have days where I don’t want to get out of the bed or off of the sofa. I have those times when I reach out to God and I can’t seem to find Him.
I pray to God that He will give my life a supernatural satisfaction…one only that He can supply. I never imagined that this would be so hard. I never imagined I could be strong enough to walk down this road. In ways I am proud of myself. But in other ways, I know I’m too hard on myself. I don’t want to ever be grumpy or frustrated when I can’t eat, even though that is hard. I just need to focus on others and God and not the food or the sickness and pain I feel.
Like anyone else, I have my personal struggles, but I don’t like it when people I love get hurt. I don’t enjoy hearing that people who I love and that are precious to me are going through battles, and sometimes I can’t do anything. My hands are tied. That’s the worst feeling of all.
Cancer has reared it’s ugly head in several people I love so much this year, first in my brother-in-law Jimmy Colaciello. You couldn’t know someone better than Jim. He treated me like a sister when we first met. I remember him meeting my sister when we both worked at the Grocery store. I knew he was good to her when I visited her at her house after they were married and I got to visit and hang out with her. She was such a great woman and I loved her so much and Jim treated me like his little sister. I know for a fact that God put Jim and Cherie together.
So when I sit here, a little bit of anger rises in me, my jaw clentches. I want to fight. So I am. I’m praying for Jim. Not only Jim, but for Cherie. I’m praying that God puts His angels over them both. I pray that there is healing in the doctors hands. I’m praying for God to just be God and be what we’ve always believed in and given our lives for. We’ve always dedicated our hearts and lives to you! Please God. So I pray for God’s servants, and I pray for Jim’s safety as he has surgery on Thursday. I just need YOU, God, to guide the doctor’s hands. We all just need you.
I also found out that LaNell Miller, my pastor’s wife, who has helped me grow and have faith and has visited me many times in the hospital, was diagnosed with Breast Cancer last week. I keep thinking, “God, are you there??” I find myself looking, searching almost. “where are you???”
All the sudden, It hit me and I got mad. I got mad that the devil is pulling out all of the stops .
I will not let Satan take one more thing from me. He will not take my friendships, he will not take my memories, he will not take one second of happiness that He doesn’t have the right to.
Beauty is looking at my 12 nieces and nephews. I love them each so much. Little Savannah who is 6 years old was the highlight of the Christmas play last night at church. This is the same little girl who they said could be aborted because they were afraid she wasn’t going to be “normal.” She was born around 2 pounds. I just shutter to think what man would have done if her parents hadn’t fought for life. I love all of my nephews and nieces, the most recent twins who were born in March this year, are quite perfect, and they’ve kind of brightened life here recently.
I don’t know why this year, especially this latter part of the year, has been so hard for me, and for many others. It’s hitting hard because it’s hitting people I love so much. Instead of being sad and crying all of the time, I will look at the beauty as I see it.
I find these moments with my parents as beautiful. For as much as I can’t wait to be with Kevin, I also can’t wait each morning to see my mom and dad and talk to them and feel their love. The relationship we’ve grown into having isn’t typical, but it’s one that I’ll forever be grateful for.
The beautiful flowers my husband got for my birthday, the same ones in my bouquet I held when I married him 12 years ago….that was beautiful.
I am praying God just strengthens us all and as this year comes to an end, I promise to fight just as hard to have a better year healthwise for 2013. I’m not pessimistic. I’m as honest as I can be. Maybe I’ll sit here a year from now and I’ll be able to look back and and thank God for the beauty of 2013.
Until then, We must be praying harder than we’ve ever prayed before. The battle is the Lords, just like he said in I Samuel 17:49. He’s got it under control. Just pray now, more than ever for each other.
I won’t be sad to see it gone.
I’ve seen people I love, struggle financially, emotionally and most of all, physically in ways that my human mind can’t stand.
Most people know the basics of my story. How since January of 2010, I wasn’t able to eat and I had feeding tubes. Then after meeting great doctors at John’s Hopkins, they had ideas and basically gave me some hope and I was able to eat from April 10th to mid July of this year. I began to get sick again with pancreatitis and gastroparesis and everything else. So after months of NJ tubes (tubes that go from your nose, down your throat, and into your small intestine), the doctors finally decided that they would have to intervene because I had lost too much weight. I have lost so much weight (about 80 pounds this year and 40 last year), I have a lot of excess skin. If the skin was gone, the doctor said that my body is starving in a way because I can’t tolerate the nutrition I need. I know that and I am feeding around the clock on this machine to remedy things, but because of the condition of my stomach and the constant nausea, it’s really hard to go places, do things and not feel bad or totally worn out. To make a complicated situation, well, still complicated , I am actually not going to be able to eat normally again most likely. It’s hard for me to say that because I have had lots of hopes and even success for 2 months. But now it’s worse than it’s ever been. I don’t want to be pessimistic, but the doctors these days don’t even want to give me false hope. My stomach is in such ill-repair, it might be good to take it out along with the pancreas. I just don’t know, quite honestly. I’ll know more at my appointment in January. Right now I am dealing with the realization that I can’t eat and this is just how it is, and coming to terms with that is hard. It’s not such a natural thing not to eat.
Daily in my life, I choose to be joyful. I have my moments of hurt, pain and isolation. I have days where I don’t want to get out of the bed or off of the sofa. I have those times when I reach out to God and I can’t seem to find Him.
I pray to God that He will give my life a supernatural satisfaction…one only that He can supply. I never imagined that this would be so hard. I never imagined I could be strong enough to walk down this road. In ways I am proud of myself. But in other ways, I know I’m too hard on myself. I don’t want to ever be grumpy or frustrated when I can’t eat, even though that is hard. I just need to focus on others and God and not the food or the sickness and pain I feel.
Like anyone else, I have my personal struggles, but I don’t like it when people I love get hurt. I don’t enjoy hearing that people who I love and that are precious to me are going through battles, and sometimes I can’t do anything. My hands are tied. That’s the worst feeling of all.
Cancer has reared it’s ugly head in several people I love so much this year, first in my brother-in-law Jimmy Colaciello. You couldn’t know someone better than Jim. He treated me like a sister when we first met. I remember him meeting my sister when we both worked at the Grocery store. I knew he was good to her when I visited her at her house after they were married and I got to visit and hang out with her. She was such a great woman and I loved her so much and Jim treated me like his little sister. I know for a fact that God put Jim and Cherie together.
So when I sit here, a little bit of anger rises in me, my jaw clentches. I want to fight. So I am. I’m praying for Jim. Not only Jim, but for Cherie. I’m praying that God puts His angels over them both. I pray that there is healing in the doctors hands. I’m praying for God to just be God and be what we’ve always believed in and given our lives for. We’ve always dedicated our hearts and lives to you! Please God. So I pray for God’s servants, and I pray for Jim’s safety as he has surgery on Thursday. I just need YOU, God, to guide the doctor’s hands. We all just need you.
I also found out that LaNell Miller, my pastor’s wife, who has helped me grow and have faith and has visited me many times in the hospital, was diagnosed with Breast Cancer last week. I keep thinking, “God, are you there??” I find myself looking, searching almost. “where are you???”
All the sudden, It hit me and I got mad. I got mad that the devil is pulling out all of the stops .
I will not let Satan take one more thing from me. He will not take my friendships, he will not take my memories, he will not take one second of happiness that He doesn’t have the right to.
Beauty is looking at my 12 nieces and nephews. I love them each so much. Little Savannah who is 6 years old was the highlight of the Christmas play last night at church. This is the same little girl who they said could be aborted because they were afraid she wasn’t going to be “normal.” She was born around 2 pounds. I just shutter to think what man would have done if her parents hadn’t fought for life. I love all of my nephews and nieces, the most recent twins who were born in March this year, are quite perfect, and they’ve kind of brightened life here recently.
I don’t know why this year, especially this latter part of the year, has been so hard for me, and for many others. It’s hitting hard because it’s hitting people I love so much. Instead of being sad and crying all of the time, I will look at the beauty as I see it.
I find these moments with my parents as beautiful. For as much as I can’t wait to be with Kevin, I also can’t wait each morning to see my mom and dad and talk to them and feel their love. The relationship we’ve grown into having isn’t typical, but it’s one that I’ll forever be grateful for.
The beautiful flowers my husband got for my birthday, the same ones in my bouquet I held when I married him 12 years ago….that was beautiful.
I am praying God just strengthens us all and as this year comes to an end, I promise to fight just as hard to have a better year healthwise for 2013. I’m not pessimistic. I’m as honest as I can be. Maybe I’ll sit here a year from now and I’ll be able to look back and and thank God for the beauty of 2013.
Until then, We must be praying harder than we’ve ever prayed before. The battle is the Lords, just like he said in I Samuel 17:49. He’s got it under control. Just pray now, more than ever for each other.
Sunday, November 4, 2012
Update for November: Please Enjoy!
I am sitting up tonight watching television and thinking. I slept for a long time today, so that is why I'm up tonight. My body has been very weak. Most of you reading this know what I’m facing.
Sometimes I really feel like I repeat myself, but for the sake of those who don’t always read my blog, or if you just have forgotten, I'll update you!! :)
I currently have a feeding tube called an NJ tube. It goes through my stomach, into my small intestines and bypasses my stomach. Every time I eat or attempt to even drink heavy liquids, I vomit or feel like I have to vomit. So my doctors, who are located in Baltimore at John’s Hopkins Hospital, basically had installed a gastric pacemaker, which worked initially for several months.
I noticed in late July that the pacemaker wasn’t working well, and since then, it’s not been working much at all. Now it does help some with the nausea, but not all of the time. We’re not sure why it’s stopped working. The doctors have adjusted it, and I’ve followed most of the guidelines. Sometimes I’m weak and I’ll try to eat a bit, but it usually is disastrous when that does happen.
So I got a temporary feeding tube in September that goes through my nose and into the intestines to give my tummy a rest. They took that one out and put another one on the other side of my face a few weeks ago and I’ll have to have that one until the end of November. I’m going back to Hopkins then, and the doctors will be making some serious decisions as to how to proceed.
I have several options. There are some experimental procedures that they are thinking of. I would be willing to do anything for my doctors. If I can help someone in the long run by doing something for research that may or may not help is fine with me, and it’s a plus if it will help me in the process.
They are talking about maybe putting a new G/J tube in me that may allow me to eat (and even though it’s kinda gross), I could open a hole in my stomach and vent and release the gasses so that if I were able to eat maybe a little bit, I wouldn’t be as sick. And when I’m too sick, I’d have a permanent feeding tube so that I wouldn’t end in the hospital. That would be ideal. But it’s a surgery and quite a life adjustment. I’d have more tubes. They've also mentioned some kind of new stent too...not sure as to what that would do, but it's a thought anyway.
I’ve lost 100 pounds total and I’m losing more because I’m not getting very nourished as anything I take in my tube, I get really sick. Resisting foods is so hard, so I’m asking you to pray for God’s willpower and that I can say no to what I should say no to! I NEED your prayers. Please pray that I can resist food. I love coffee, and even the creamer makes me sick. I just get so sick from anything anymore. Pray I'll have clear guidance. I need it more than ever.
So that’s what’s happening with me healthwise. I go back to Maryland on Nov. 28th and I see my pancreas doctor and my stomach doctor on the 29th. It will surprise me if they DON’T want to do surgery. I’m expecting that. Just pray for wisdom, guidance and for peace for both Kevin and I.
It’s been emotional for me in many ways. Emotional because I feel very disheveled right now. I feel like my home is with Kevin, but I’m uprooted because of my condition, and I’m so VERY lucky and blessed to have parents who love me and take care of me when I’m in Maryland.
But I also have fear and frustration as my parents and the people I love so much are getting older (I’m sure they’ll appreciate me saying that), and the last thing I want to be is a burden. I don’t want to be a burden since it’s such a long drive there and back from Virginia where my parents live. It’s also hard being in and out of the hospital and not knowing what’s going to happen. Of course I feel loved and everyone tells me how happy they are for me to be there and that I could stay with them any time…but it’s just the way I feel. I just don’t like being the cause of stress. I wish all of this was normal but I also wouldn’t change the life lessons that I’ve learned by going through this journey with my health.
Speaking about this journey, I really have been reflecting so much lately. I go through seasons in life, and I think over the past few months, I have really been reflective about life and friendships and about the strength and resilience of the human spirit. What I mean is that I think we are so much stronger than we give ourselves credit for. I read the greatest quote tonight and I wanted to share it with you:
“You’re braver than you believe, and stronger than you seem, and smarter than you think.” –A.A. Milne
I don’t know much about A.A. Milne except that he wrote great children's poems and is most popular for writing Winnie the Pooh. He apparently was a great playwright and author. I just absolutely loved the quote that he spoke.
It’s true. So many times we don’t try things because we don’t think we can do it. We don’t believe we’re tough enough, and we surely can’t make decisions because we lack the knowledge.
I guess that’s what being ill has taught me. There have been moments when I surely thought I couldn’t make it through a 4-hour painful test, and I wouldn’t make it if I threw up for one more second. I just wasn’t brave enough.
But somehow I was. What some may think is just the human spirit, I know is God. Our God is so strong. He truly is the picture of strength. Of absolute and total power. When we have no reservoir of strength or power left, somehow as a child of His, we can tap into His source of power and it's like we can tackle what we face.
I didn’t think I was smart enough to fix a problem or make decisions with Kevin that could alter our future and my health, but we were.
We did it, thanks to prayers from others, God imparted His wisdom...the ability to do something with His guidance and protection.
And I didn’t give myself enough credit that I could do anything. I truly believe that's how Satan wants us to feel. Defeated and weak and frail. All I had to do was cling to those words in the Bible that say so simply yet so profoundly, “I can do all things through Christ who strengthens me.” I surely underestimated my strength, but more importantly, the strength of the one who lives in me.
I am that strong in Christ.
A.A. Milne was right. We are braver, we are stronger, and we are smarter than we think. We are made in the image of God and He is and has been all of those things from the beginning of time. Strong, Brave and Smart. The good thing is that when we are His child, we get to tap into that strength daily. Not a second we have to walk alone. Not not one second do we have to feel weak. No one moment should we believe the lie that God doesn't enable His children to have His supernatural strength.
Now, I can't know what the future holds, but I am trying to journal every day and I'm starting a new blog about things and I'll keep this one up too. It touches me when people read and leave comments or they'll say their friend read it. It means so much to me.
Don't forget you're brave, your strong and you're smarter than you give yourself credit for. God says so. I know that she's going to kill me for saying this, but maybe she won't read it any way and I won't have to hear her get mad at me...One of the people I admire so much because I know she didn't know how strong God was in her is my sister in law Shellye. She's a really strong and Godly woman. She's raised two really great kids who love God and Shellye is strong beyond what I ever imagined. I look at her and I see such strength and grace. She'd be the first to tell you, too, that it's all God, and she's pretty strong. I love watching people chose God when they could have chosen a path of destruction and anger.
God really is good, and I am forever going to cling to his nail-scarred hands. He chose a path of pain for me, and I can endure the barbs of what Satan throws my way.
Thank you for reading. You are so special to me!
Love in Christ always,
Ami :)
Sometimes I really feel like I repeat myself, but for the sake of those who don’t always read my blog, or if you just have forgotten, I'll update you!! :)
I currently have a feeding tube called an NJ tube. It goes through my stomach, into my small intestines and bypasses my stomach. Every time I eat or attempt to even drink heavy liquids, I vomit or feel like I have to vomit. So my doctors, who are located in Baltimore at John’s Hopkins Hospital, basically had installed a gastric pacemaker, which worked initially for several months.
I noticed in late July that the pacemaker wasn’t working well, and since then, it’s not been working much at all. Now it does help some with the nausea, but not all of the time. We’re not sure why it’s stopped working. The doctors have adjusted it, and I’ve followed most of the guidelines. Sometimes I’m weak and I’ll try to eat a bit, but it usually is disastrous when that does happen.
So I got a temporary feeding tube in September that goes through my nose and into the intestines to give my tummy a rest. They took that one out and put another one on the other side of my face a few weeks ago and I’ll have to have that one until the end of November. I’m going back to Hopkins then, and the doctors will be making some serious decisions as to how to proceed.
I have several options. There are some experimental procedures that they are thinking of. I would be willing to do anything for my doctors. If I can help someone in the long run by doing something for research that may or may not help is fine with me, and it’s a plus if it will help me in the process.
They are talking about maybe putting a new G/J tube in me that may allow me to eat (and even though it’s kinda gross), I could open a hole in my stomach and vent and release the gasses so that if I were able to eat maybe a little bit, I wouldn’t be as sick. And when I’m too sick, I’d have a permanent feeding tube so that I wouldn’t end in the hospital. That would be ideal. But it’s a surgery and quite a life adjustment. I’d have more tubes. They've also mentioned some kind of new stent too...not sure as to what that would do, but it's a thought anyway.
I’ve lost 100 pounds total and I’m losing more because I’m not getting very nourished as anything I take in my tube, I get really sick. Resisting foods is so hard, so I’m asking you to pray for God’s willpower and that I can say no to what I should say no to! I NEED your prayers. Please pray that I can resist food. I love coffee, and even the creamer makes me sick. I just get so sick from anything anymore. Pray I'll have clear guidance. I need it more than ever.
So that’s what’s happening with me healthwise. I go back to Maryland on Nov. 28th and I see my pancreas doctor and my stomach doctor on the 29th. It will surprise me if they DON’T want to do surgery. I’m expecting that. Just pray for wisdom, guidance and for peace for both Kevin and I.
It’s been emotional for me in many ways. Emotional because I feel very disheveled right now. I feel like my home is with Kevin, but I’m uprooted because of my condition, and I’m so VERY lucky and blessed to have parents who love me and take care of me when I’m in Maryland.
But I also have fear and frustration as my parents and the people I love so much are getting older (I’m sure they’ll appreciate me saying that), and the last thing I want to be is a burden. I don’t want to be a burden since it’s such a long drive there and back from Virginia where my parents live. It’s also hard being in and out of the hospital and not knowing what’s going to happen. Of course I feel loved and everyone tells me how happy they are for me to be there and that I could stay with them any time…but it’s just the way I feel. I just don’t like being the cause of stress. I wish all of this was normal but I also wouldn’t change the life lessons that I’ve learned by going through this journey with my health.
Speaking about this journey, I really have been reflecting so much lately. I go through seasons in life, and I think over the past few months, I have really been reflective about life and friendships and about the strength and resilience of the human spirit. What I mean is that I think we are so much stronger than we give ourselves credit for. I read the greatest quote tonight and I wanted to share it with you:
“You’re braver than you believe, and stronger than you seem, and smarter than you think.” –A.A. Milne
I don’t know much about A.A. Milne except that he wrote great children's poems and is most popular for writing Winnie the Pooh. He apparently was a great playwright and author. I just absolutely loved the quote that he spoke.
It’s true. So many times we don’t try things because we don’t think we can do it. We don’t believe we’re tough enough, and we surely can’t make decisions because we lack the knowledge.
I guess that’s what being ill has taught me. There have been moments when I surely thought I couldn’t make it through a 4-hour painful test, and I wouldn’t make it if I threw up for one more second. I just wasn’t brave enough.
But somehow I was. What some may think is just the human spirit, I know is God. Our God is so strong. He truly is the picture of strength. Of absolute and total power. When we have no reservoir of strength or power left, somehow as a child of His, we can tap into His source of power and it's like we can tackle what we face.
I didn’t think I was smart enough to fix a problem or make decisions with Kevin that could alter our future and my health, but we were.
We did it, thanks to prayers from others, God imparted His wisdom...the ability to do something with His guidance and protection.
And I didn’t give myself enough credit that I could do anything. I truly believe that's how Satan wants us to feel. Defeated and weak and frail. All I had to do was cling to those words in the Bible that say so simply yet so profoundly, “I can do all things through Christ who strengthens me.” I surely underestimated my strength, but more importantly, the strength of the one who lives in me.
I am that strong in Christ.
A.A. Milne was right. We are braver, we are stronger, and we are smarter than we think. We are made in the image of God and He is and has been all of those things from the beginning of time. Strong, Brave and Smart. The good thing is that when we are His child, we get to tap into that strength daily. Not a second we have to walk alone. Not not one second do we have to feel weak. No one moment should we believe the lie that God doesn't enable His children to have His supernatural strength.
Now, I can't know what the future holds, but I am trying to journal every day and I'm starting a new blog about things and I'll keep this one up too. It touches me when people read and leave comments or they'll say their friend read it. It means so much to me.
Don't forget you're brave, your strong and you're smarter than you give yourself credit for. God says so. I know that she's going to kill me for saying this, but maybe she won't read it any way and I won't have to hear her get mad at me...One of the people I admire so much because I know she didn't know how strong God was in her is my sister in law Shellye. She's a really strong and Godly woman. She's raised two really great kids who love God and Shellye is strong beyond what I ever imagined. I look at her and I see such strength and grace. She'd be the first to tell you, too, that it's all God, and she's pretty strong. I love watching people chose God when they could have chosen a path of destruction and anger.
God really is good, and I am forever going to cling to his nail-scarred hands. He chose a path of pain for me, and I can endure the barbs of what Satan throws my way.
Thank you for reading. You are so special to me!
Love in Christ always,
Ami :)
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