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 :)
Wednesday, January 30, 2013
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!!!!
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