Hi everyone! I wanted to update everyone and tell you about my pain pump procedure that I had on Wednesday. I know many of you have been praying for me.
I went to Dallas and underwent a trial for a pain pump.
A “pain pump,” is a method of giving medication directly to your spinal cord. The system uses a small pump that is surgically placed under the skin of your abdomen and delivers medication through a catheter to the area around your spinal cord – similar to an epidural that women may have during childbirth
The reason that they are giving me a pain pump is because most all other traditional methods have failed to relieve my pain. Because the medication in the pain pump is delivered directly to the spinal cord, my pain can be controlled with a much smaller dose than is needed with oral medication. The goal of a drug pump is to better control my symptoms and to reduce oral medications.
I don’t have the permanent pump yet. This is the trial to make sure that it will work. It is pumping medicine into my spine all of the time so I will get more relief.
Basically what they did on Wednesday is put a catheter into my spinal cord. It is sticking out through my back and I have to carry the actual pump in a bag at all times. I will have to go back to Dallas tomorrow (Friday) to see if the medication dosage needs adjustment and then I will have to go back to Dallas next Wednesday to have the catheter pulled out and then we’ll evaluate if it was successful. If we feel like it was successful, I will have the permanent device placed in as soon as possible. I probably won’t have the permanent device put in until September because of my trip to Maryland to take care of my pancreas. Once I come home from Maryland, I will have surgery to put this pain pump in if the trial works.
So far I feel like it is working somewhat. I am in quite a bit of pain from the actual surgery. My back hurts and my legs hurt and I have had a headache because its in my spine. BUT the good news is that the pancreas pain and the fibromyalgia and chronic pain that I have had for 12 years seems to be a little bit better. I am having a hard time differentiating between the pains because I am hurting so bad from the surgery. I do have a lot of hope, though because some of the pain is lessened, I think.
I have an appointment tomorrow to see if my dosage needs to be adjusted. We will see what they say.
I can’t take a shower or bath for a week because they don’t want the area to get infection, so it’s sponge baths for me…gross. And I really can’t do much because I literally have a bag to carry everywhere and a tube sticking out of my back. I also have been feeding on my feeding tube so I have that bag to carry as well. I feel like a bag lady, carrying around all of these bags everywhere. I am trying to stay in one place and get comfortable but it’s been kind of hard to get comfortable. I am hoping to just rest until it gets pulled out next week. We will have to decide then whether to get the real pump or not.
Thank you for your prayers. These are big decisions. I really appreciate you all and love you lots.
I know I need to call some of you, and I will soon. I have been in and out of rest and sleep because it’s kind of hard to get comfortable. I promise to contact everyone when I feel a little better.
Love you all and I’ll keep you updated.
Ami
Thursday, July 28, 2011
Thursday, July 21, 2011
The Latest on Me!
I'm sitting here in my living room and I'm having another night of difficult sleep, so I thought it would be a good time to update my blog. I have seriously debated posting this upcoming post, but I figured those who read this blog must really care about me and my life, so I thought I would write and share with you what's going on in my life. My husband is a very private person, so sharing intimate parts of my life is not something he particularly welcomes, but I don't think he will mind my sharing some of my struggles and such. As I said, all who read on care about things going on in my life.
I am actually getting ready to go back to Maryland in a few weeks to have tests redone on my pancreas. I have had a difficult summer as I have been trying to get off of this steroid medication I have been on for 12 years. I was on 30 milligrams, and now I am on 13 milligrams. This has been a major step for me, and I am really happy that I am down to this amount of prednisone. I have been on prednisone for 12 years, and it has wreaked havoc on my life, while also helping me tremendously. But the doctors want me off of the medication in case I have to have surgery on my pancreas. I go to John's Hopkins in August again to determine whether or not I will have to have surgery. We are not sure what the doctors will say or if they will determine that the spot on my pancreas has grown or not. We are really putting it all in God's hands. The last blood test I had a week ago did show that I am still having pancreatitis and my liver enzymes are high. I will be seeing stomach, pancreas and liver specialists when I go home in August. I leave on August 10th, and plan to be in Maryland through Sept. 13th, possibly longer if surgery is what is deemed necessary.
The thing I wanted to share is a prayer request. I am scheduled next week for a procedure to help with my pain. What most people I guess don't know about me is the amount of pain I am in from day to day. I don't share this with you for you to feel sorry for me or to pity me in any way. I share it for you to know me and pray for me. I share it because If you are reading this, I know you care about me. I have suffered with chronic pain for 12 years now. I can't really explain it anymore than to say I hurt all of the time, chronically. To breathe hurts. Literally. Taking a breath actually pains me. Sometimes my body feels like I am turning into stone. That's just the muscle part. I also have intense stomach and pancreatitis pain daily which is also very hard to handle. I have lived with the pain for 12 years, albeit not as intense as it is now. At first it was so debilitating. I couldn't deal with it. I didn't know what to do but to take medication. It was so overwhelming. Now, I have gotten kind of numb to the pain, but it's always there. It's nagging and it makes me edgy at times. It makes me frustrated, but I try to handle it and not talk about it much. Anyway, after years of pain and years of dealing with what to do, I am finally in as good of a place as I can be, even though I find that I am in more pain now than I have ever been in.
Of course most of you know that I have the most understanding husband who allows me to have my bad days. He allows me to hurt and not do what I can't. He never expects me o have the house cleaned impeccably or be something I'm not. He is so wonderful, I don't even have the words to explain. I could not face the pain without his support, or the faith that I have in my Lord and Savior Jesus Christ. I always think of the pain that my sin inflicted on Him, and I know that I can deal with this pain because it is nothing in comparison to what He suffered on Calvary for me.
To get back on track, my pain is unbearable at times. I am on very strong medication and have been for years. I see a pain specialist in Dallas and I am scared because my pain over the years has intensified because of the pancreatitis. The doctors are concerned with treating my pain and want to put in a pain pump in my body. I am scheduled to get the trial of the pump next week. My husband and I are nervous. I will have a trial to see if the pump works and if it relieves my pain. We will then decide whether or not to have the device permanently implanted once I get back from my visit in Maryland in September.
I guess I am asking you to pray for Kevin and I to make the right decision in this process. I don't know if continuing the oral pain medications would be better than a pump. I am scared because it is a huge step for us. I am scared because I am in a lot of pain all of the time. I want to know what is the best thing to do for myself and my husband. I want the most normal life I can have, but I also want a quality of life. I have A LOT of huge decisions to weigh. These are not easy decisions. Each one has a consequence, and it seems like now the decisions I make aren't simple ones. Things with my health are serious and any decision I make now could be a game changer. Does that make sense? It's just kind of scary for us.
Normalcy for me right now is basically a lot of rest and not much activity because my strength is so weak from the fact that I can't eat a lot of things and I hate using my feeding tube. I rest because I don't have strength and the pain is intense. I try to stay active with my friends, family and church. I get up every morning and make myself go places and do things. I run errands, but I always have to take a nap pretty much every day, and I feel pretty run down most of the time. I try to do as much as I can. Some people understand my limitations, and others don't. They don't realize how tired or how sick I really am. One thing I wish more people understood is just because you may look okay doesn't mean you feel that way all of the time. Chronic and debilitating pain is something I never understood until I developed this disease 12 years ago.
I don't want anyone to ever feel sorry for me. Please know that that is not why I share this. I covet your prayers for the decisions that have to be made. I am only 34 years old, and I feel I am facing a health crisis that most people haven't had to face. Looking back, I know I could have made different decisions, and sometimes that haunts me, but I know that all things work together for good, just like God's Word says. I know that He is in control of everything. I don't know if I have always made the right decisions, but I know I am in the center of God's will. I know I am where I need to be. I know He loves me and I love Him and I walk and talk with my Savior daily.
I know I am a strong person. I know that I don't do everything right. But I do know that I love the Lord and want first and foremost to be in His will. I want to walk close to Jesus daily, and I want others to see that and I want to witness for Him. My relationship to Christ will always be preeminent in my life. But second is my relationship with my husband. I adore him and count Kevin as an angel that was sent into my life from God. I don't just say that for the sake of being cute or funny or romantic. I say it because I truthfully mean it. His love has been what has saved my life from ruin. I believe in love. I know it because I know what true love is. I only wish that everyone in life could know the love that I have experienced from Christ and from Kevin because the love that I have known have been what makes the pain I go through daily something that I can handle.
I say all of these things to simply ask for your prayers over the next few months. These are going to be trying months. Trying months in that I will be deciding about this pain pump, going to John's Hopkins for treatment, deciding about life changing surgery and being separated from Kevin while I am seeking treatment. It's always good being with my family in Maryland, but my heart is always with the love of my life. He is so busy with work and stresses of his life, and I know he worries for me because he loves me as much as I love him. Sometimes I focus on how he is my world, and I forget that I am his world as well. I know this because he tells me so, but most of all, he daily shows me so.
I don't know why I am spilling my guts and everyone who knows Kevin knows that he will not be happy that I am posting all of this for everyone to know. But again, I know that if you are taking the time to read this, than you must care an awful lot about me, and that means more than anything. The fact that you are my friend is something that I am proud of and appreciate.
I will never stop believing in my healing, knowing that one day I will have a new body and all of this pain will be gone. I don't know when that day will come, but I believe God can and will do it whenever He decides. Until that day, I will believe and trust that He knows best. I will never ever stop trusting in Him, and I will be faithful to praise Him for His goodness in my life. I have been blessed with not only a love of a lifetime, but 2 families who have loved me, both my own and Kevin's family, both of whom have been my support network. I can't imaging my life without the Webb Family or the McCarty family in my life.
Enough babbling for now. It's almost 3:40 a.m. and I am thinking it's time to get to sleep.
Thanks again for caring about me. If you are reading this, I hope that you will think about the relationship that I have with you and know that you are special to me. I don't take anything for granted, especially my friendships and relationships I make. Each person that is reading this is valuable to me, and I hope you know you are! Thanks again for loving and praying for me!
Love, Ami
I am actually getting ready to go back to Maryland in a few weeks to have tests redone on my pancreas. I have had a difficult summer as I have been trying to get off of this steroid medication I have been on for 12 years. I was on 30 milligrams, and now I am on 13 milligrams. This has been a major step for me, and I am really happy that I am down to this amount of prednisone. I have been on prednisone for 12 years, and it has wreaked havoc on my life, while also helping me tremendously. But the doctors want me off of the medication in case I have to have surgery on my pancreas. I go to John's Hopkins in August again to determine whether or not I will have to have surgery. We are not sure what the doctors will say or if they will determine that the spot on my pancreas has grown or not. We are really putting it all in God's hands. The last blood test I had a week ago did show that I am still having pancreatitis and my liver enzymes are high. I will be seeing stomach, pancreas and liver specialists when I go home in August. I leave on August 10th, and plan to be in Maryland through Sept. 13th, possibly longer if surgery is what is deemed necessary.
The thing I wanted to share is a prayer request. I am scheduled next week for a procedure to help with my pain. What most people I guess don't know about me is the amount of pain I am in from day to day. I don't share this with you for you to feel sorry for me or to pity me in any way. I share it for you to know me and pray for me. I share it because If you are reading this, I know you care about me. I have suffered with chronic pain for 12 years now. I can't really explain it anymore than to say I hurt all of the time, chronically. To breathe hurts. Literally. Taking a breath actually pains me. Sometimes my body feels like I am turning into stone. That's just the muscle part. I also have intense stomach and pancreatitis pain daily which is also very hard to handle. I have lived with the pain for 12 years, albeit not as intense as it is now. At first it was so debilitating. I couldn't deal with it. I didn't know what to do but to take medication. It was so overwhelming. Now, I have gotten kind of numb to the pain, but it's always there. It's nagging and it makes me edgy at times. It makes me frustrated, but I try to handle it and not talk about it much. Anyway, after years of pain and years of dealing with what to do, I am finally in as good of a place as I can be, even though I find that I am in more pain now than I have ever been in.
Of course most of you know that I have the most understanding husband who allows me to have my bad days. He allows me to hurt and not do what I can't. He never expects me o have the house cleaned impeccably or be something I'm not. He is so wonderful, I don't even have the words to explain. I could not face the pain without his support, or the faith that I have in my Lord and Savior Jesus Christ. I always think of the pain that my sin inflicted on Him, and I know that I can deal with this pain because it is nothing in comparison to what He suffered on Calvary for me.
To get back on track, my pain is unbearable at times. I am on very strong medication and have been for years. I see a pain specialist in Dallas and I am scared because my pain over the years has intensified because of the pancreatitis. The doctors are concerned with treating my pain and want to put in a pain pump in my body. I am scheduled to get the trial of the pump next week. My husband and I are nervous. I will have a trial to see if the pump works and if it relieves my pain. We will then decide whether or not to have the device permanently implanted once I get back from my visit in Maryland in September.
I guess I am asking you to pray for Kevin and I to make the right decision in this process. I don't know if continuing the oral pain medications would be better than a pump. I am scared because it is a huge step for us. I am scared because I am in a lot of pain all of the time. I want to know what is the best thing to do for myself and my husband. I want the most normal life I can have, but I also want a quality of life. I have A LOT of huge decisions to weigh. These are not easy decisions. Each one has a consequence, and it seems like now the decisions I make aren't simple ones. Things with my health are serious and any decision I make now could be a game changer. Does that make sense? It's just kind of scary for us.
Normalcy for me right now is basically a lot of rest and not much activity because my strength is so weak from the fact that I can't eat a lot of things and I hate using my feeding tube. I rest because I don't have strength and the pain is intense. I try to stay active with my friends, family and church. I get up every morning and make myself go places and do things. I run errands, but I always have to take a nap pretty much every day, and I feel pretty run down most of the time. I try to do as much as I can. Some people understand my limitations, and others don't. They don't realize how tired or how sick I really am. One thing I wish more people understood is just because you may look okay doesn't mean you feel that way all of the time. Chronic and debilitating pain is something I never understood until I developed this disease 12 years ago.
I don't want anyone to ever feel sorry for me. Please know that that is not why I share this. I covet your prayers for the decisions that have to be made. I am only 34 years old, and I feel I am facing a health crisis that most people haven't had to face. Looking back, I know I could have made different decisions, and sometimes that haunts me, but I know that all things work together for good, just like God's Word says. I know that He is in control of everything. I don't know if I have always made the right decisions, but I know I am in the center of God's will. I know I am where I need to be. I know He loves me and I love Him and I walk and talk with my Savior daily.
I know I am a strong person. I know that I don't do everything right. But I do know that I love the Lord and want first and foremost to be in His will. I want to walk close to Jesus daily, and I want others to see that and I want to witness for Him. My relationship to Christ will always be preeminent in my life. But second is my relationship with my husband. I adore him and count Kevin as an angel that was sent into my life from God. I don't just say that for the sake of being cute or funny or romantic. I say it because I truthfully mean it. His love has been what has saved my life from ruin. I believe in love. I know it because I know what true love is. I only wish that everyone in life could know the love that I have experienced from Christ and from Kevin because the love that I have known have been what makes the pain I go through daily something that I can handle.
I say all of these things to simply ask for your prayers over the next few months. These are going to be trying months. Trying months in that I will be deciding about this pain pump, going to John's Hopkins for treatment, deciding about life changing surgery and being separated from Kevin while I am seeking treatment. It's always good being with my family in Maryland, but my heart is always with the love of my life. He is so busy with work and stresses of his life, and I know he worries for me because he loves me as much as I love him. Sometimes I focus on how he is my world, and I forget that I am his world as well. I know this because he tells me so, but most of all, he daily shows me so.
I don't know why I am spilling my guts and everyone who knows Kevin knows that he will not be happy that I am posting all of this for everyone to know. But again, I know that if you are taking the time to read this, than you must care an awful lot about me, and that means more than anything. The fact that you are my friend is something that I am proud of and appreciate.
I will never stop believing in my healing, knowing that one day I will have a new body and all of this pain will be gone. I don't know when that day will come, but I believe God can and will do it whenever He decides. Until that day, I will believe and trust that He knows best. I will never ever stop trusting in Him, and I will be faithful to praise Him for His goodness in my life. I have been blessed with not only a love of a lifetime, but 2 families who have loved me, both my own and Kevin's family, both of whom have been my support network. I can't imaging my life without the Webb Family or the McCarty family in my life.
Enough babbling for now. It's almost 3:40 a.m. and I am thinking it's time to get to sleep.
Thanks again for caring about me. If you are reading this, I hope that you will think about the relationship that I have with you and know that you are special to me. I don't take anything for granted, especially my friendships and relationships I make. Each person that is reading this is valuable to me, and I hope you know you are! Thanks again for loving and praying for me!
Love, Ami
Sunday, June 19, 2011
Another Update :)
It has been a long time since I have posted a blog and I have to apologize. Things have been busy for me, but I thought I would update everyone on things.
I'm going to be honest as I write this blog. I think most of you who read this and follow me really know me and understand what I am going through.
This has been probably the most frustrating and difficult period of my life. I feel so sick all of the time as of late. My pain is so excruciating most of the time. I just spent a week in the hospital because they couldn't get my pain and my pancreatitis under control. I am trying to step down and take less steroids in case I have to have surgery on my pancreas. When I do that, my body reacts terribly and I get sick. That causes tremendous pain, and I have such a high tolerance to the pain medicines since I've been on them for so long, that the medicines aren't working well and they just cut the pain sometimes. It's a hard place to be in.
The thing I am doing now to help myself the best way I know how is not to eat much at all. I haven't eaten much since last year, but I can't even eat soup or anything soft at all now. I am feeding on my feeding tube. I will allow myself broth and crackers, but not much more than that. I had been trying to eat rice and soft foods that I could tolerate, but I wasn't tolerating them well. I've decided that I can't keep getting sick like this, and eating things just aggravates the pancreas. Do you realize how hard it is not to eat anything? I mean anything at all. I am struggling with this so much. It's mental but it's also physical because I am so hungry. My stomach is empty all of the time because my feeding tube bypasses the stomach, so I have cravings but I can't satisfy them. It is a very frustrating feeling. Doctors say so coldly to me that I can only drink water. They just don't understand how hard that is. It just is. But truthfully I feel so much better when I don't eat. So that's the option now. So that's what I have to do. I don't like it and I don't want it. But it's my only chance at being okay for now.
The next step for me is to see all of my doctors over the next few weeks here in Texas. I am planning to be in Maryland in August for the repeat pancreas tests where they will determine if they need to do surgery on my pancreas or not. However, If I have another flare up between now and then, I will probably be coming to town sooner than that so that I can be treated by the experts.
My case is so complicated. I've found that if you're not a classic medical case or don't have a classic medical problem, the doctors are frustrated and throw their hands up. They want to put you in a mold, and when they can't, it frustrates them.
I just know I can't continue to live my life this way and in this much pain. Something has got to be done and I know that when I see the doctors in August, something will be done. I am just scared and nervous about what that may be. It could be something simple or something serious. The unknown is scary.
My faith in God is not shaken, however. It's funny how that is. To be honest, however, I have been more discouraged than I ever have been before. I have been down. That doesn't mean that my faith is shaken.I'm more secure in God's love for me than ever. For me, the fact that I have been down just means that I have to read His Word even more and pick myself up off the ground and keep moving on. I have to get the focus off of my problems and onto others and I need to pray for them and focus on praying for others. After the tears, I need to get up and go on.
It's been hard because I feel sick so much and I just pray for healing. I pray that even if I don't get healed that God would just take some of the pain away. That He would just make it easier for me. I just pray simple things like that. Truthfully, sometimes I don't know how to pray. I want God to know how much I love Him. I will never stop serving Him with my life. No matter what I go through, I will not quit. I will not quit praising Him for His goodness. I will not quit witnessing for Him. I will not quit telling others about Him. I will not quit praying. I will not quit believing in healing. I will not quit loving Him.
This is the scariest thing I've been through. It's scary to be in so much pain and fear you may never live a normal life. It's scary facing the fact that you may never eat normally again. It's scary to face life changing surgeries.
But I don't face anything alone. I have God. I have my husband. I have my family. I have my friends. I have God. I have God.
I read this in devotions the other day. It said in I Kings 8:23 NLT "O Lord, God of Israel, there is no God like You in all of Heaven above or on the earth below. You keep your covenant and show unfailing love to all who walk before you in wholehearted devotion."
Wholehearted devotion. That's what I want to have. I hope I have that.
Pray for me. I am pretty desperate for prayers. Of course for healing first and foremost, but also for the doctors to have wisdom to know what to do for me. Especially when I come home in August and see the specialists.
Thanks for letting me talk and thanks for listening. As I said, I've been a little down, and I am sure you can read that in this post. But I know all things work together for good as God says in the Bible, and I believe in the power of prayer.
Thanks so much to everyone who emails me and keeps me encouraged. You don't know what it means to get little messages in my inbox and stuff. You all are special to me in so many ways.
Thanks!!!! I'll write a more cheery post next time!!!!
Love, Ami
I'm going to be honest as I write this blog. I think most of you who read this and follow me really know me and understand what I am going through.
This has been probably the most frustrating and difficult period of my life. I feel so sick all of the time as of late. My pain is so excruciating most of the time. I just spent a week in the hospital because they couldn't get my pain and my pancreatitis under control. I am trying to step down and take less steroids in case I have to have surgery on my pancreas. When I do that, my body reacts terribly and I get sick. That causes tremendous pain, and I have such a high tolerance to the pain medicines since I've been on them for so long, that the medicines aren't working well and they just cut the pain sometimes. It's a hard place to be in.
The thing I am doing now to help myself the best way I know how is not to eat much at all. I haven't eaten much since last year, but I can't even eat soup or anything soft at all now. I am feeding on my feeding tube. I will allow myself broth and crackers, but not much more than that. I had been trying to eat rice and soft foods that I could tolerate, but I wasn't tolerating them well. I've decided that I can't keep getting sick like this, and eating things just aggravates the pancreas. Do you realize how hard it is not to eat anything? I mean anything at all. I am struggling with this so much. It's mental but it's also physical because I am so hungry. My stomach is empty all of the time because my feeding tube bypasses the stomach, so I have cravings but I can't satisfy them. It is a very frustrating feeling. Doctors say so coldly to me that I can only drink water. They just don't understand how hard that is. It just is. But truthfully I feel so much better when I don't eat. So that's the option now. So that's what I have to do. I don't like it and I don't want it. But it's my only chance at being okay for now.
The next step for me is to see all of my doctors over the next few weeks here in Texas. I am planning to be in Maryland in August for the repeat pancreas tests where they will determine if they need to do surgery on my pancreas or not. However, If I have another flare up between now and then, I will probably be coming to town sooner than that so that I can be treated by the experts.
My case is so complicated. I've found that if you're not a classic medical case or don't have a classic medical problem, the doctors are frustrated and throw their hands up. They want to put you in a mold, and when they can't, it frustrates them.
I just know I can't continue to live my life this way and in this much pain. Something has got to be done and I know that when I see the doctors in August, something will be done. I am just scared and nervous about what that may be. It could be something simple or something serious. The unknown is scary.
My faith in God is not shaken, however. It's funny how that is. To be honest, however, I have been more discouraged than I ever have been before. I have been down. That doesn't mean that my faith is shaken.I'm more secure in God's love for me than ever. For me, the fact that I have been down just means that I have to read His Word even more and pick myself up off the ground and keep moving on. I have to get the focus off of my problems and onto others and I need to pray for them and focus on praying for others. After the tears, I need to get up and go on.
It's been hard because I feel sick so much and I just pray for healing. I pray that even if I don't get healed that God would just take some of the pain away. That He would just make it easier for me. I just pray simple things like that. Truthfully, sometimes I don't know how to pray. I want God to know how much I love Him. I will never stop serving Him with my life. No matter what I go through, I will not quit. I will not quit praising Him for His goodness. I will not quit witnessing for Him. I will not quit telling others about Him. I will not quit praying. I will not quit believing in healing. I will not quit loving Him.
This is the scariest thing I've been through. It's scary to be in so much pain and fear you may never live a normal life. It's scary facing the fact that you may never eat normally again. It's scary to face life changing surgeries.
But I don't face anything alone. I have God. I have my husband. I have my family. I have my friends. I have God. I have God.
I read this in devotions the other day. It said in I Kings 8:23 NLT "O Lord, God of Israel, there is no God like You in all of Heaven above or on the earth below. You keep your covenant and show unfailing love to all who walk before you in wholehearted devotion."
Wholehearted devotion. That's what I want to have. I hope I have that.
Pray for me. I am pretty desperate for prayers. Of course for healing first and foremost, but also for the doctors to have wisdom to know what to do for me. Especially when I come home in August and see the specialists.
Thanks for letting me talk and thanks for listening. As I said, I've been a little down, and I am sure you can read that in this post. But I know all things work together for good as God says in the Bible, and I believe in the power of prayer.
Thanks so much to everyone who emails me and keeps me encouraged. You don't know what it means to get little messages in my inbox and stuff. You all are special to me in so many ways.
Thanks!!!! I'll write a more cheery post next time!!!!
Love, Ami
Wednesday, April 27, 2011
My Plan of Treatment
I wanted to write a blog to let everyone know what is happening with me. I try to blog about what is happening with my health so that all of my prayer warriors and praying buddies out there can know what’s happening to me.
I am currently seeking medical treatment because I have a condition called Gastroparesis, which is where your stomach doesn’t move. So I can’t really eat much. Most of you know that, and I’ve written a lot about it.
The newest development is that the stomach specialist at John’s Hopkins thought I should be seen by a pancreas doctor. So I had tests run on Monday of this week. The doctors found a mass growing on my pancreas, which greatly concerns them. They really don’t think that it is any kind of cancer, however they have not ruled that out 100%. They did a blood test which will help determine if there is any cancerous cells they should be worried about. I will find the results to that early next week.
The next step is to monitor the legions that are growing on my pancreas. They think that the mass could cause trouble if it grows or changes. This mass could be a result of the chronic pancreatitis that I have had since Sept. 09. Or it could be a benign tumor that is growing that could cause problems.
I can have surgery, but the long and short of it is that I am not healthy enough right now with all of my other problems. Plus it’s a risky surgery as to what they’d have to do.
So to make a long story short, I have to see a few more specialists and go through a few more tests over the next few weeks.
Then hopefully I will be able to come home to Texas for a month or two.
Then I will have to return to Baltimore to repeat all of the pancreas tests to see if the growth has changed. If it has, then we may have to do surgery. Any surgery involving the pancreas is very risky.
I still can’t eat much. I still am tube feeding. I will likely struggle with that all of my life, but I can eat little things here and there when I have to, but the less, the better. If I can tube feed, that’s optimal for me. So that’s mainly what I’m going to be doing so I can be comfortable.
I have a very important doctor’s visit tomorrow. I would appreciate your prayers regarding that. It’s at 1:15 p.m.
Saying all of this, I am confident in God that He has everything in control. We don’t know why this is happening, but my relationship with God is not contingent on what trials a go through. I love Jesus Christ more than anything , and He is the great physician. When He heals me of this, I will be able to praise Him and my healing will prove He does miracles today! I just know He is healing me already.
This is hard on me for several reasons. First, because I miss Kevin. For those of you who know me well, He is the absolute love of my life. He is my hero and the one I look to for comfort, love and most of all laughs during our doctor visits. He is my better half and without him, I couldn’t walk this road. I just couldn’t Secondly, I miss my Texas family. I miss my other mom and dad and family there.
My parents have been so good to me during this. I feel so needy. I feel like such a burden right now. I feel like I am sucking them dry from all of my appointments…having them drive me every day to Baltimore or Lutherville. It’s hard, but I know they love me. I cry because I’m not worthy of the Love they give. I am SO blessed. I adore my mom and dad and I am so thankful for God giving me them. I cry at the thought of all they have done for me. And I know they do it out of serious love for me. That’s exactly What it is…pure love.
Anyway, I am okay. I will be fine because the Lord is in control. Keep praying and I’ll keep you updated. We don’t want this growth to get bigger and we don’t want surgery or it to be cancer. Those are the things you can pray for right now. Pray that my stomach doesn’t get so sick all of the time and pray for my Husband and family.
I want everyone who reads this to know that I know God, the Lord Jesus Christ as my personal savior and friend. I know Him as my father, and I am never going to quit asking my father and my best friend for health and healing and happiness. But saying that, I am going to love Him no matter what I walk through. And I’m going to be happy doing it. I have been so blessed with so many things in my life, most of all Jesus’ love and my husband and family’s love. If I never have another blessing in my life, I would be satisfied and still be among the most blessed people in the world. I wouldn’t trade my life for anything in this world.
I hope I haven’t confused you. I am writing this kindof fast and I just wanted to get it typed up so that you all would be able to know what was going on!
I love you all!
Love, Ami :)
I am currently seeking medical treatment because I have a condition called Gastroparesis, which is where your stomach doesn’t move. So I can’t really eat much. Most of you know that, and I’ve written a lot about it.
The newest development is that the stomach specialist at John’s Hopkins thought I should be seen by a pancreas doctor. So I had tests run on Monday of this week. The doctors found a mass growing on my pancreas, which greatly concerns them. They really don’t think that it is any kind of cancer, however they have not ruled that out 100%. They did a blood test which will help determine if there is any cancerous cells they should be worried about. I will find the results to that early next week.
The next step is to monitor the legions that are growing on my pancreas. They think that the mass could cause trouble if it grows or changes. This mass could be a result of the chronic pancreatitis that I have had since Sept. 09. Or it could be a benign tumor that is growing that could cause problems.
I can have surgery, but the long and short of it is that I am not healthy enough right now with all of my other problems. Plus it’s a risky surgery as to what they’d have to do.
So to make a long story short, I have to see a few more specialists and go through a few more tests over the next few weeks.
Then hopefully I will be able to come home to Texas for a month or two.
Then I will have to return to Baltimore to repeat all of the pancreas tests to see if the growth has changed. If it has, then we may have to do surgery. Any surgery involving the pancreas is very risky.
I still can’t eat much. I still am tube feeding. I will likely struggle with that all of my life, but I can eat little things here and there when I have to, but the less, the better. If I can tube feed, that’s optimal for me. So that’s mainly what I’m going to be doing so I can be comfortable.
I have a very important doctor’s visit tomorrow. I would appreciate your prayers regarding that. It’s at 1:15 p.m.
Saying all of this, I am confident in God that He has everything in control. We don’t know why this is happening, but my relationship with God is not contingent on what trials a go through. I love Jesus Christ more than anything , and He is the great physician. When He heals me of this, I will be able to praise Him and my healing will prove He does miracles today! I just know He is healing me already.
This is hard on me for several reasons. First, because I miss Kevin. For those of you who know me well, He is the absolute love of my life. He is my hero and the one I look to for comfort, love and most of all laughs during our doctor visits. He is my better half and without him, I couldn’t walk this road. I just couldn’t Secondly, I miss my Texas family. I miss my other mom and dad and family there.
My parents have been so good to me during this. I feel so needy. I feel like such a burden right now. I feel like I am sucking them dry from all of my appointments…having them drive me every day to Baltimore or Lutherville. It’s hard, but I know they love me. I cry because I’m not worthy of the Love they give. I am SO blessed. I adore my mom and dad and I am so thankful for God giving me them. I cry at the thought of all they have done for me. And I know they do it out of serious love for me. That’s exactly What it is…pure love.
Anyway, I am okay. I will be fine because the Lord is in control. Keep praying and I’ll keep you updated. We don’t want this growth to get bigger and we don’t want surgery or it to be cancer. Those are the things you can pray for right now. Pray that my stomach doesn’t get so sick all of the time and pray for my Husband and family.
I want everyone who reads this to know that I know God, the Lord Jesus Christ as my personal savior and friend. I know Him as my father, and I am never going to quit asking my father and my best friend for health and healing and happiness. But saying that, I am going to love Him no matter what I walk through. And I’m going to be happy doing it. I have been so blessed with so many things in my life, most of all Jesus’ love and my husband and family’s love. If I never have another blessing in my life, I would be satisfied and still be among the most blessed people in the world. I wouldn’t trade my life for anything in this world.
I hope I haven’t confused you. I am writing this kindof fast and I just wanted to get it typed up so that you all would be able to know what was going on!
I love you all!
Love, Ami :)
Thursday, April 21, 2011
I want a cheeseburger!
I'm hungry.
There's no getting around it.
I'm just hungry.
I want a big cheeseburger. A great big cheeseburger with extra cheese and ketchup. I would even put mayonnaise on it. But I wouldn't put mustard on it. I just want the meat.
This not eating has been really hard for me. I can't eat anything because of my stomach condition. The doctor didn't want me eating anything at all, but I am allowing myself to eat popsicles and suck on some hard candy. I am also allowing myself to drink whatever I want. I still get sick to my stomach, but I have to have a little bit of flavor.
When it comes to eating, you don't realize what you are missing until it's not there. I mean, I never figured that I'd be denied the basic function of eating. I mean, it's such a basic thing, but it's such a pivotal part of life. It's funny how much of life revolves around eating. It's something that you do when you don't know what else to do. It's something you do when you want to meet with a friend...you just get something to eat or talk over lunch. It's Easter dinner, a birthday party with cake, and popcorn at a movie.
I promised myself that if...or when (see, I'm being positive!) I eat again, I am going to allow myself to eat what I can. And I'm not going to take it for granted. I'm going to enjoy eating. I'm not going to worry about my weight. I'm going to enjoy eating and enjoy flavors. I'm going to enjoy everything I can enjoy. I don't know to what capacity my stomach will work again. Unless I receive a miraculous healing, which is what I am totally holding out for and believing in, I don't know how well it will ever work again. But when it does work and we get a solution to this stomach situation, I'm going to enjoy a cheeseburger.
I like to think and dream about food. I love to think about what I would eat if I could. Some think it's torturous to eat in front of me. It really doesn't bother me, and if it does bother me, I leave and go to the next room or remove myself when I need to. I just like to think about eating. I know it may be strange to some people, but I really like to think about pizza and fruit and Italian food...something other than popsicles and juice.
This is just a part of life, at least a major part of it right now for me. It's funny how you miss things when they are not there anymore. Even something so basic as eating. You'd think things would get easier and they will, I hope.
I know it's all going to be okay.
There's no getting around it.
I'm just hungry.
I want a big cheeseburger. A great big cheeseburger with extra cheese and ketchup. I would even put mayonnaise on it. But I wouldn't put mustard on it. I just want the meat.
This not eating has been really hard for me. I can't eat anything because of my stomach condition. The doctor didn't want me eating anything at all, but I am allowing myself to eat popsicles and suck on some hard candy. I am also allowing myself to drink whatever I want. I still get sick to my stomach, but I have to have a little bit of flavor.
When it comes to eating, you don't realize what you are missing until it's not there. I mean, I never figured that I'd be denied the basic function of eating. I mean, it's such a basic thing, but it's such a pivotal part of life. It's funny how much of life revolves around eating. It's something that you do when you don't know what else to do. It's something you do when you want to meet with a friend...you just get something to eat or talk over lunch. It's Easter dinner, a birthday party with cake, and popcorn at a movie.
I promised myself that if...or when (see, I'm being positive!) I eat again, I am going to allow myself to eat what I can. And I'm not going to take it for granted. I'm going to enjoy eating. I'm not going to worry about my weight. I'm going to enjoy eating and enjoy flavors. I'm going to enjoy everything I can enjoy. I don't know to what capacity my stomach will work again. Unless I receive a miraculous healing, which is what I am totally holding out for and believing in, I don't know how well it will ever work again. But when it does work and we get a solution to this stomach situation, I'm going to enjoy a cheeseburger.
I like to think and dream about food. I love to think about what I would eat if I could. Some think it's torturous to eat in front of me. It really doesn't bother me, and if it does bother me, I leave and go to the next room or remove myself when I need to. I just like to think about eating. I know it may be strange to some people, but I really like to think about pizza and fruit and Italian food...something other than popsicles and juice.
This is just a part of life, at least a major part of it right now for me. It's funny how you miss things when they are not there anymore. Even something so basic as eating. You'd think things would get easier and they will, I hope.
I know it's all going to be okay.
Saturday, April 9, 2011
A little more venting from me!
Hello everyone. I am sitting here in my parents's basement house at 1 a.m., and I couldn't sleep so I am just thinking. Thinking about so many things.
I am not trying to be down. I am just being honest and I have to be. I just wanted to write a little bit and kind of share some of my struggles.
This not eating anything at all is really playing some crazy tricks on my mind. It seems like everything I see makes me think of food. I keep craving things like ham and steak and pizza. I would eat even a McGriddle, and I absolutely hate McGriddles at McDonalds. You know I'm desperate when that crosses my mind. That and Liver. Boy, I'd even eat liver, especially if it had onions.
I am allowing myself popsicles and some hard candy of some sort. I am allowing myself to suck and bite on that and have some flavor through the popsicles. I just told the doctor I had to have something.
Truthfully, my stomach is better when I'm not eating anything at all. I only had to take nausea medication two times today. It's not as bad when I'm not eating.
But that is such a hard thing to do. Not eating is like one of the things in life that I enjoy so much. Food had always been an integral part of my family. My mom cooks so good and so do my sisters. They know how to cook and they have it all down pat. But now I can't eat, and I really feel terrible because they don't want to eat around me. That doesn't bother me. I am just fine and I've got to get used to this. It's not something I want to get used to, but I have to.
I don't understand why the Lord wants us to walk through these valleys. I really don't understand why we have to go through things that don't make sense at the time, but I know it's in God's plan. My prayer is to keep the most positive attitude that I can me during all of these trials and when I look back, I will be stronger for them. I long to have a stronger relationship with the Lord. I just do. I want the Lord to be seen as Good and Holy and perfect. I want Him to be glorified in my life. I truly am nothing and could do nothing at all apart from my Heavenly father. He is my rock, and has given me so much.
This not eating thing is so hard. It's so essential to life, but I know that I can do it. I am stronger than I think. Anything to get better.
The update is that I have tests on April 25th and 2 doctors appointments on the 26th. Kevin is flying in the 21st through the 27th. So he'll be here to make all of the important decisions with me. We may be facing surgery and we need wisdom as to whether to have it here or in Texarkana.
Pray for our finances and pray for our time apart. I miss everyone. These trips back and forth and shipping my feedings is also an expense. But I thank God for leading me through it all.
You never realize how strong you are until you have to go through something like this. I would like to think I'm strong. But even more, I'm happy. I am happy no matter what. If God didn't bless me with one more thing in my life, I would be blessed enough. I have so much love in my life. I have so much happiness in my life, and I can walk through this trial with my head held up high and say I will never leave or forsake you, God. I want to be a pleasing daughter to my Lord and to my earthly parents too. I'm going to be just fine.
Pray for me. That's what pulls me through.
I love each of you who reads this. Thanks for being there for me.
Love, Ami
I am not trying to be down. I am just being honest and I have to be. I just wanted to write a little bit and kind of share some of my struggles.
This not eating anything at all is really playing some crazy tricks on my mind. It seems like everything I see makes me think of food. I keep craving things like ham and steak and pizza. I would eat even a McGriddle, and I absolutely hate McGriddles at McDonalds. You know I'm desperate when that crosses my mind. That and Liver. Boy, I'd even eat liver, especially if it had onions.
I am allowing myself popsicles and some hard candy of some sort. I am allowing myself to suck and bite on that and have some flavor through the popsicles. I just told the doctor I had to have something.
Truthfully, my stomach is better when I'm not eating anything at all. I only had to take nausea medication two times today. It's not as bad when I'm not eating.
But that is such a hard thing to do. Not eating is like one of the things in life that I enjoy so much. Food had always been an integral part of my family. My mom cooks so good and so do my sisters. They know how to cook and they have it all down pat. But now I can't eat, and I really feel terrible because they don't want to eat around me. That doesn't bother me. I am just fine and I've got to get used to this. It's not something I want to get used to, but I have to.
I don't understand why the Lord wants us to walk through these valleys. I really don't understand why we have to go through things that don't make sense at the time, but I know it's in God's plan. My prayer is to keep the most positive attitude that I can me during all of these trials and when I look back, I will be stronger for them. I long to have a stronger relationship with the Lord. I just do. I want the Lord to be seen as Good and Holy and perfect. I want Him to be glorified in my life. I truly am nothing and could do nothing at all apart from my Heavenly father. He is my rock, and has given me so much.
This not eating thing is so hard. It's so essential to life, but I know that I can do it. I am stronger than I think. Anything to get better.
The update is that I have tests on April 25th and 2 doctors appointments on the 26th. Kevin is flying in the 21st through the 27th. So he'll be here to make all of the important decisions with me. We may be facing surgery and we need wisdom as to whether to have it here or in Texarkana.
Pray for our finances and pray for our time apart. I miss everyone. These trips back and forth and shipping my feedings is also an expense. But I thank God for leading me through it all.
You never realize how strong you are until you have to go through something like this. I would like to think I'm strong. But even more, I'm happy. I am happy no matter what. If God didn't bless me with one more thing in my life, I would be blessed enough. I have so much love in my life. I have so much happiness in my life, and I can walk through this trial with my head held up high and say I will never leave or forsake you, God. I want to be a pleasing daughter to my Lord and to my earthly parents too. I'm going to be just fine.
Pray for me. That's what pulls me through.
I love each of you who reads this. Thanks for being there for me.
Love, Ami
Tuesday, April 5, 2011
Update on my condition
Well, I thought that I would write a little blog to update all of my friends and family who want to know what's going on in my life.
I went to John's Hopkins University Hospital today. The good thing was that the 2 doctors that I saw were wonderful. They were so thorough and EVERYTHING I had hoped they would be. I praise God for that.
The bad news is that they were not very hopeful about my stomach situation. She explained that my stomach is like a sink. It doesn't move and it has a drain at the bottom. ANYTHING put into my stomach clogs the drain. So anyway, they are making me eat NOTHING at all by mouth. I mean NOTHING. I can have a little bit of water and less than liter of beverages during the day. She wants me to come back in two weeks. They are going to run some tests in the mean time to check my pancreas. She is concerned about the fact that I am on a lot of steroids and I'm in a lot of pain. But we're just taking things one step at a time.
The bad thing is that I will have to be away from my husband and my Texas family for longer than expected. I just know, though, that I am in good hands. My Kevin is so good to me and he wants me to get the top notch care.
They are talking about doing a surgery to put another tube in my stomach. It would help tremendously with the nausea and sickness. We aren't 100% sure whether we'll do the surgery here or back home. We will find out in 2 weeks what we're going to do about that.
There are a lot of decisions to make in these next few days. I really covet your prayers and ask that you pray for wisdom.
Kevin is planning to visit me and hopefully come to my next doctor's appointment here. Pray for finances and for wisdom for us. We are just wanting to do the best thing for my health.
Even though the doctors are not very hopeful, I know that Jesus is the great physician and He can do all of the healing I need. I know that the Lord is going to get all of the glory through all of these circumstances.
I am SO thankful for the Lord and all of the Love He has given me in my life. I can go through these trials. I just think of all of the Lord has blessed me with, and I will NOT complain about these things. I am not going to give the devil any place for any foothold. I have to stay strong and just focus on the Lord. Fully rely on God. That's what I'm doing right now.
Please pray for me to be strong. I can't make it without your praerys.
This is my update. I will keep you posted as to what the tests say and how long I'm going to be here in Maryland.
Thanks for the prayers for me and my husband Kevin!!!
Love you all,
Ami
I went to John's Hopkins University Hospital today. The good thing was that the 2 doctors that I saw were wonderful. They were so thorough and EVERYTHING I had hoped they would be. I praise God for that.
The bad news is that they were not very hopeful about my stomach situation. She explained that my stomach is like a sink. It doesn't move and it has a drain at the bottom. ANYTHING put into my stomach clogs the drain. So anyway, they are making me eat NOTHING at all by mouth. I mean NOTHING. I can have a little bit of water and less than liter of beverages during the day. She wants me to come back in two weeks. They are going to run some tests in the mean time to check my pancreas. She is concerned about the fact that I am on a lot of steroids and I'm in a lot of pain. But we're just taking things one step at a time.
The bad thing is that I will have to be away from my husband and my Texas family for longer than expected. I just know, though, that I am in good hands. My Kevin is so good to me and he wants me to get the top notch care.
They are talking about doing a surgery to put another tube in my stomach. It would help tremendously with the nausea and sickness. We aren't 100% sure whether we'll do the surgery here or back home. We will find out in 2 weeks what we're going to do about that.
There are a lot of decisions to make in these next few days. I really covet your prayers and ask that you pray for wisdom.
Kevin is planning to visit me and hopefully come to my next doctor's appointment here. Pray for finances and for wisdom for us. We are just wanting to do the best thing for my health.
Even though the doctors are not very hopeful, I know that Jesus is the great physician and He can do all of the healing I need. I know that the Lord is going to get all of the glory through all of these circumstances.
I am SO thankful for the Lord and all of the Love He has given me in my life. I can go through these trials. I just think of all of the Lord has blessed me with, and I will NOT complain about these things. I am not going to give the devil any place for any foothold. I have to stay strong and just focus on the Lord. Fully rely on God. That's what I'm doing right now.
Please pray for me to be strong. I can't make it without your praerys.
This is my update. I will keep you posted as to what the tests say and how long I'm going to be here in Maryland.
Thanks for the prayers for me and my husband Kevin!!!
Love you all,
Ami
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