Dear Friends,
Well I made it through surgery. Thank you for your prayers. I was so nervous, but I could tell that God was with me, holding me in the palm of His hand as always!! I mean it when I say THANKS for praying!!!
I had my pain pump surgery yesterday afternoon, and by all accounts, SO FAR it is a success! We hope it will continue to be okay. Right now, I am in a tremendous amount of pain because of the actual surgery. It's going to be a difficult next couple of days. I am hurting pretty intensely because of the tender spot it is in and because they had to slice open my side. It's so sore.
They inserted an 8 ounce disk that looks like a hockey puck into my right side of my abdomen. It's actually larger and heavier than I expected it to be. It's weird to think it's inside of me. Kevin and I were laughing because I have rods in my back, a tube in my stomach and a pain pump in my side. I'm turning into a robot!!
Anyway, The surgery took longer than they anticipated because they had a little bit of trouble anchoring the device inside my side. It basically had to be sutured in my side somehow so that it would stay there and not move at all. The doctor had a bit of trouble because of my tissue and the fact that I already have a feeding tube on one side. I am wearing an abdominal band, which is like a girdle, and I will have to wear it for a week straight without taking it off, and then I will have to wear it for 6 to 8 more weeks. It is holding the device in place so it doesn't move at all. It's important that it stays in place.
After the device was implanted, they threaded a catheter to my spine and the medication is continuously flowing and will provide me relief, if all is successful. It will take some adjusting to get the dosage correctly. They can set the device with their computer systems.
So basically I have to rest for the next few days. I can't lift anything AT ALL. I have to be still and I can't shower for a few days.
I ask you to PLEASE pray for a few things. First that I will not be in so much pain. I am really in a lot of pain right now from the incision and from the surgery. I hope that will go away soon. The doctors said the pump should give me relief, but they did say that it is normal to be in severe pain for the first few days after surgery, so what I am feeling is normal.
I also ask you to pray that it works and that everything goes well with the device and that there are NO complications. The doctors are concerned about infection, so I'm on medication to prevent me from healing. I really appreciate all of your prayers. I love you all. You mean so much to me. Thanks for being so concerned and reading up on my life. I will let you know how things go.
I am looking forward to a visit from my college roommate this weekend. My best friend from Pennsylvania is flying in and will be helping me recuperate! I can't wait to see her. Pray we have a great visit, too!
Thanks again for your prayers,
Ami :)
Thursday, November 3, 2011
Wednesday, October 26, 2011
True Joy
Dear Friends,
I couldn't sleep for thinking so much and I thought this would be a perfect time to blog since I haven't done it in a while. This is a different blog. I am going to update you on my condition and then share a little something God has laid on my heart.
I am doing okay and I am blessed. Next week I get my pain pump. I am tremendously nervous about my procedure, but after that one of my best buddies is coming to visit me and to help be my nurse for a few days. I am so glad for her coming to hang out with me and help me in any way needed. I am truly blessed with lots of people who love me.
Anyway, I just wanted to take some time to just share what the Lord has been speaking to me in my life. So many times, I just update you on my condition, which I'll do right now just to get it out of the way. I am going home in December with an open-ended ticket because I don't know what the doctors are going to suggest. I get more test done at John's Hopkins in Baltimore in December. Then I will see the doctors and they will decide what course of treatment to take. They may want to take my pancreas out or not. I am currently not eating anything by mouth except for water and tic tacs and decaf tea. That's basically it. I have lost 30 pounds in 2 months and I am only being fed by my j-tube. Anyway, I am in a lot of pain so hopefully the pain pump will resolve some of those issues. It's still all very scary and if I think about it too much I start to panic!!!
The real reason I wanted to write tonight is just to talk about what God has put on my heart. I want to talk about Joy and what it means to be joyous. I really pray that in my life, I am joyous. I think Joy is so much more important than Happiness. To me, happiness can change, but Joy is permanent. I believe that living joyously is a character trait.
So many times I see people that have lost their Joy. They've lost joy in life, joy in their marriage, joy in their circumstances, joy in living. It makes me so sad because joy is the easiest thing to obtain. We obtain it by walking with Christ. When you are walking with Christ, no one can steal your joy. They can rattle you and maybe mess with your happiness, but they CAN NOT steal your Joy. That's at the core of your heart.
When we as Christians walk around without joy, we are showing the world that we have nothing that they don't have. We are showing the world that there is nothing joyous about serving Christ.
I'm not saying you can't be sad or have a bad day or be in a bad mood, but when we stay there and wallow in the bad, and we don't want any help to get better -- when there is no true happiness and no true enjoyment in life, then you've lost that Joy that God supplies.
It's one of the fruits of the Spirit, in fact, it's listed right after Love in Gal. 5;22. That's how we get Joy in the first place, by becoming so close to the Spirit and taking on the fruits of the Spirit.
Jesus says in John 17:13 that "I come to you...that they may have MY joy fulfilled in themselves."
In Dueteronomy 28:47, the Children of Israel were punished "Because (they) did not serve the Lord (their) God with joy and gladness of heart..."
A popular verse on Joy is in James 1:2 that says "Count it all JOY when you fall into various trials..."
Perhaps my favorite verse on Joy that I looked up was I Peter 1:8 that says "Whom having not seen you Love, Though now you do not see him yet believing, you rejoice with JOY inexpressible and full of glory."
Sometimes I look at Christians, including myself, and I wonder if I am someone that should bear the name "Christian." The name itself is a derivative of Christ, the man who died to save us. Yet, we do things so often to displease Him. I'm not talking about things we mess up on or make sinful mistakes that we are sorry for. It's the deliberate sins I think that make God so angry. We carry the name of His son, yet we are so unlike Him in many ways.
One of those ways is in our walk and in living with Joy. You can be angry and still be joyous. You can be mad and hurt and still be joyous. You can still be treated unfairly and be joyous. Because joy comes from within. It is a fruit of the Spirit. It comes from Knowing Christ so intimately and having true peace.
Happiness comes and goes every day. But can we say our lives are joyous? Do we walk in peace and bring peace when we walk in a room, or does the air deflate when we walk in the room. When your caller ID shows the number of the person who is calling, do you think "I want to talk to that person because he's got a joyful spirit" or do you think "Not the downer again...I'll let the machine get it."
I'm not preaching at all. I just want joy to be so evident in every person that calls themselves Christians. I heard an anonymous quote once that said "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ."
Ouch. That hurt. I want to be like Christ so badly it hurts!
It's just a thought for today!
Love you all. Thanks for reading!
I couldn't sleep for thinking so much and I thought this would be a perfect time to blog since I haven't done it in a while. This is a different blog. I am going to update you on my condition and then share a little something God has laid on my heart.
I am doing okay and I am blessed. Next week I get my pain pump. I am tremendously nervous about my procedure, but after that one of my best buddies is coming to visit me and to help be my nurse for a few days. I am so glad for her coming to hang out with me and help me in any way needed. I am truly blessed with lots of people who love me.
Anyway, I just wanted to take some time to just share what the Lord has been speaking to me in my life. So many times, I just update you on my condition, which I'll do right now just to get it out of the way. I am going home in December with an open-ended ticket because I don't know what the doctors are going to suggest. I get more test done at John's Hopkins in Baltimore in December. Then I will see the doctors and they will decide what course of treatment to take. They may want to take my pancreas out or not. I am currently not eating anything by mouth except for water and tic tacs and decaf tea. That's basically it. I have lost 30 pounds in 2 months and I am only being fed by my j-tube. Anyway, I am in a lot of pain so hopefully the pain pump will resolve some of those issues. It's still all very scary and if I think about it too much I start to panic!!!
The real reason I wanted to write tonight is just to talk about what God has put on my heart. I want to talk about Joy and what it means to be joyous. I really pray that in my life, I am joyous. I think Joy is so much more important than Happiness. To me, happiness can change, but Joy is permanent. I believe that living joyously is a character trait.
So many times I see people that have lost their Joy. They've lost joy in life, joy in their marriage, joy in their circumstances, joy in living. It makes me so sad because joy is the easiest thing to obtain. We obtain it by walking with Christ. When you are walking with Christ, no one can steal your joy. They can rattle you and maybe mess with your happiness, but they CAN NOT steal your Joy. That's at the core of your heart.
When we as Christians walk around without joy, we are showing the world that we have nothing that they don't have. We are showing the world that there is nothing joyous about serving Christ.
I'm not saying you can't be sad or have a bad day or be in a bad mood, but when we stay there and wallow in the bad, and we don't want any help to get better -- when there is no true happiness and no true enjoyment in life, then you've lost that Joy that God supplies.
It's one of the fruits of the Spirit, in fact, it's listed right after Love in Gal. 5;22. That's how we get Joy in the first place, by becoming so close to the Spirit and taking on the fruits of the Spirit.
Jesus says in John 17:13 that "I come to you...that they may have MY joy fulfilled in themselves."
In Dueteronomy 28:47, the Children of Israel were punished "Because (they) did not serve the Lord (their) God with joy and gladness of heart..."
A popular verse on Joy is in James 1:2 that says "Count it all JOY when you fall into various trials..."
Perhaps my favorite verse on Joy that I looked up was I Peter 1:8 that says "Whom having not seen you Love, Though now you do not see him yet believing, you rejoice with JOY inexpressible and full of glory."
Sometimes I look at Christians, including myself, and I wonder if I am someone that should bear the name "Christian." The name itself is a derivative of Christ, the man who died to save us. Yet, we do things so often to displease Him. I'm not talking about things we mess up on or make sinful mistakes that we are sorry for. It's the deliberate sins I think that make God so angry. We carry the name of His son, yet we are so unlike Him in many ways.
One of those ways is in our walk and in living with Joy. You can be angry and still be joyous. You can be mad and hurt and still be joyous. You can still be treated unfairly and be joyous. Because joy comes from within. It is a fruit of the Spirit. It comes from Knowing Christ so intimately and having true peace.
Happiness comes and goes every day. But can we say our lives are joyous? Do we walk in peace and bring peace when we walk in a room, or does the air deflate when we walk in the room. When your caller ID shows the number of the person who is calling, do you think "I want to talk to that person because he's got a joyful spirit" or do you think "Not the downer again...I'll let the machine get it."
I'm not preaching at all. I just want joy to be so evident in every person that calls themselves Christians. I heard an anonymous quote once that said "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ."
Ouch. That hurt. I want to be like Christ so badly it hurts!
It's just a thought for today!
Love you all. Thanks for reading!
Thursday, September 15, 2011
September update
What a trip this has been!
I know some of you have been wondering where I have been for the last few weeks. I thought that this would be the best way of updating you.
I came here in August to have another test on my pancreas. I had the test and the mass on the pancreas that I had looked good. It wasn't cancerous. We were happy. The tests they did showed worsening chronic pancreatitis, and the doctor's recommendations for me were for me to lose weight, get off of the steroid medication and then in December we will revisit the situation and determine if I should have my pancreas taken out.
Well, on Aug. 31st I woke up so ill. I can't remember ever feeling that sick before. I couldn't stop throwing up. It was so painful. I had a fever and I felt the most gut wrenching pain. I knew it was pancreatitis.
So my parents rushed me into the hospital in Virginia. I was so bad that they decided to transfer me by ambulance to John's Hopkins. Once they had a room available, I got to John's Hopkins. They diagnosed me with "Acute on Chronic Pancreatitis" which basically means I was having a terrible serious acute episode of pancreatitis on top of chronic pancreatitis.
The doctors and nurses at John's Hopkins were unbelievable. I mean, absolutely top notch. It was difficult to get there for my parents every day. It was hard for them, and I appreciate their sacrifices for me!
Anyway, the doctors told me under no circumstances am I to eat. I can not eat anything except for water and ice chips for the next four months. I have a j-tube, which is where I get my feedings from, but I had been trying to tolerate food, but the doctors at John's Hopkins told me that this time my pancreas is just so messed up that I can have nothing. The pancreas is destroying itself. Once I am healthy, I may be able to have it pulled out. My doctor said that he doesn't want to make me worse. He wants me to be stronger. He wants me to be strengthened in case I need to have surgery.
That's the update.
I am so sorry that I haven't been able to get together with all of my friends this trip. It's been a trying one.
But I know that God has me in the palm of His hand and I am waiting for the day he touches me with His healing power!
I am planning to go home on Sept.25th. I was supposed to go on the 10th, but being so sick and weak has put a damper on those plans. Please pray that I can regain my strenght.
Thanks again for all of your prayers. I love you all!
Ami
I know some of you have been wondering where I have been for the last few weeks. I thought that this would be the best way of updating you.
I came here in August to have another test on my pancreas. I had the test and the mass on the pancreas that I had looked good. It wasn't cancerous. We were happy. The tests they did showed worsening chronic pancreatitis, and the doctor's recommendations for me were for me to lose weight, get off of the steroid medication and then in December we will revisit the situation and determine if I should have my pancreas taken out.
Well, on Aug. 31st I woke up so ill. I can't remember ever feeling that sick before. I couldn't stop throwing up. It was so painful. I had a fever and I felt the most gut wrenching pain. I knew it was pancreatitis.
So my parents rushed me into the hospital in Virginia. I was so bad that they decided to transfer me by ambulance to John's Hopkins. Once they had a room available, I got to John's Hopkins. They diagnosed me with "Acute on Chronic Pancreatitis" which basically means I was having a terrible serious acute episode of pancreatitis on top of chronic pancreatitis.
The doctors and nurses at John's Hopkins were unbelievable. I mean, absolutely top notch. It was difficult to get there for my parents every day. It was hard for them, and I appreciate their sacrifices for me!
Anyway, the doctors told me under no circumstances am I to eat. I can not eat anything except for water and ice chips for the next four months. I have a j-tube, which is where I get my feedings from, but I had been trying to tolerate food, but the doctors at John's Hopkins told me that this time my pancreas is just so messed up that I can have nothing. The pancreas is destroying itself. Once I am healthy, I may be able to have it pulled out. My doctor said that he doesn't want to make me worse. He wants me to be stronger. He wants me to be strengthened in case I need to have surgery.
That's the update.
I am so sorry that I haven't been able to get together with all of my friends this trip. It's been a trying one.
But I know that God has me in the palm of His hand and I am waiting for the day he touches me with His healing power!
I am planning to go home on Sept.25th. I was supposed to go on the 10th, but being so sick and weak has put a damper on those plans. Please pray that I can regain my strenght.
Thanks again for all of your prayers. I love you all!
Ami
Saturday, August 27, 2011
More of the Same!! :)
The only thing coming to my mind right now are the words: More of the same.
That basically sums up what is going on with me.
I had my latest round of doctor’s appointments at John’s Hopkins this past week. They did repeat tests on my pancreas.
The doctor called me yesterday and said, “Well, I have good news and bad news.”
The good news is that my tumor on my pancreas is NOT growing substantially right now and it’s NOT cancerous.
The bad news is that I have severe and worsening Chronic Pancreatitis that will not go away. He thinks that eventually I will have to have a total pancreatectomy which is a removal of my pancreas. They are going to retest me in December and see where things stand.
For the past month, I had been doing a little better and eating a little. I mean, I was severely nauseous and very sick all of the time with anything I ate, but I was able to tolerate a little. But the doctors now have told me in all seriousness and candor that in order to get better and prepare in case I need to have my pancreas out that I can no longer eat ANYTHING at all. His exact words were, “These are the cards you’ve been dealt, and you have to deal with them, Ami.”
That is hard to hear.
Having a chronic illness is so hard because as he said, there is not any easy fix. They can’t just go in and fix me right now. They don’t want to do a surgery right now because I am on steroid medication, and my healing process would be compromised because of that. I need to be off of the steroids, I need to lose some weight and I need to be off all food except for tube feedings. Then they would consider the surgery. It is a MAJOR, life altering surgery. Living without a pancreas is rare and complicated. It’s not something I want to have done if I can avoid it. But the pancreatitis is worsening in severity, and unless the Lord performs a miracle, It’s something that eventually will have to happen.
The doctor said it’s really going to depend on how tolerable the pain and stuff is for me. It is quite painful.
I hate not eating. It’s hard. It’s miserable. But it’s what has to be done.
Please pray for me. I know that God is in all of this. I know that He is there and is going to bring me through all of it. I just know it. I know that He is my strength and I’m going to make it through!!! We don’t know what we are going to do about the pain pump. It’s something that I’ll face with Kevin eventually. We just need prayers.
In a nutshell, I just wanted to quick update everyone. I will write longer later. I just wanted you to know that, thankfully I don’t have pancreatic cancer. It’s all benign, but the pancreatitis is really bad and getting worse, and eventually I’m going to have to have my pancreas removed. They are going to test me around Christmas time and see where things stand. It’s up to the Lord to heal me and get me better. And I know He will!! I have to believe!!
That basically sums up what is going on with me.
I had my latest round of doctor’s appointments at John’s Hopkins this past week. They did repeat tests on my pancreas.
The doctor called me yesterday and said, “Well, I have good news and bad news.”
The good news is that my tumor on my pancreas is NOT growing substantially right now and it’s NOT cancerous.
The bad news is that I have severe and worsening Chronic Pancreatitis that will not go away. He thinks that eventually I will have to have a total pancreatectomy which is a removal of my pancreas. They are going to retest me in December and see where things stand.
For the past month, I had been doing a little better and eating a little. I mean, I was severely nauseous and very sick all of the time with anything I ate, but I was able to tolerate a little. But the doctors now have told me in all seriousness and candor that in order to get better and prepare in case I need to have my pancreas out that I can no longer eat ANYTHING at all. His exact words were, “These are the cards you’ve been dealt, and you have to deal with them, Ami.”
That is hard to hear.
Having a chronic illness is so hard because as he said, there is not any easy fix. They can’t just go in and fix me right now. They don’t want to do a surgery right now because I am on steroid medication, and my healing process would be compromised because of that. I need to be off of the steroids, I need to lose some weight and I need to be off all food except for tube feedings. Then they would consider the surgery. It is a MAJOR, life altering surgery. Living without a pancreas is rare and complicated. It’s not something I want to have done if I can avoid it. But the pancreatitis is worsening in severity, and unless the Lord performs a miracle, It’s something that eventually will have to happen.
The doctor said it’s really going to depend on how tolerable the pain and stuff is for me. It is quite painful.
I hate not eating. It’s hard. It’s miserable. But it’s what has to be done.
Please pray for me. I know that God is in all of this. I know that He is there and is going to bring me through all of it. I just know it. I know that He is my strength and I’m going to make it through!!! We don’t know what we are going to do about the pain pump. It’s something that I’ll face with Kevin eventually. We just need prayers.
In a nutshell, I just wanted to quick update everyone. I will write longer later. I just wanted you to know that, thankfully I don’t have pancreatic cancer. It’s all benign, but the pancreatitis is really bad and getting worse, and eventually I’m going to have to have my pancreas removed. They are going to test me around Christmas time and see where things stand. It’s up to the Lord to heal me and get me better. And I know He will!! I have to believe!!
Monday, August 1, 2011
Update: Pain Pump Pulled
Well, I wanted to write an update because some people might not know what is going on with me.
Right now I am laying on a mattress in my living room here in Texas. It's so hot. I am in the living room on a mattress because I have to lay flat for 72 hours due to a spinal fluid leak and severe spinal headache.
I had the trial pain pump put in. It was placed in my spine, and things seemed to be fine. That was Wednesday. On Friday, I saw the doctors and they adjusted my medication, and I was really excited because for the first time in years, I really felt like I had minimal pain. It was exciting because I was getting relief. They wanted me to keep the trial pump in for a few more days.
Well, I woke up on Saturday morning, and I had the worst headache of my life. I had tingling down my right side, and I was miserable. Something having to do with the catheter in my back where the medication was being delivered got messed up and was hitting a nerve, and the doctor said that I had a spinal fluid leak which is causing my headache. This happened even though they did a procedure to prevent this. It still happened, but I will be okay.
So thankfully, my father in law took me this morning to Dallas and they pulled out the pain pump trial. The doctor told me I need to lay flat for 72 hours. If my headache doesn't get better, then I have to go back to get another blood patch, which will hopefully stop any spinal fluid leak. I'm hoping that I DON'T have to do that!
So I am fine, just laying flat. I can check my computer for a few minutes at a time. Please pray that I don't have to have another procedure done to fix this and that it will go away on its own.
Thanks everyone. I will update you all on how I'm doing. If I don't respond to your posts right now, it's just cause I can't get comfortable and I can't spend too much time on the computer at once. I am still positive that the pain pump is going to work because I did get relief. This will not happen with the real pump because it will be a permanent device implanted in me. I am doing fine, thanks to God and a great family.
Trust in the Lord with ALL thy heart and lean not unto thine own understanding. In ALL thy Ways ACKNOWLEDGE HIM and HE will DIRECT thy paths!!!!! Prov.3:5-6
Right now I am laying on a mattress in my living room here in Texas. It's so hot. I am in the living room on a mattress because I have to lay flat for 72 hours due to a spinal fluid leak and severe spinal headache.
I had the trial pain pump put in. It was placed in my spine, and things seemed to be fine. That was Wednesday. On Friday, I saw the doctors and they adjusted my medication, and I was really excited because for the first time in years, I really felt like I had minimal pain. It was exciting because I was getting relief. They wanted me to keep the trial pump in for a few more days.
Well, I woke up on Saturday morning, and I had the worst headache of my life. I had tingling down my right side, and I was miserable. Something having to do with the catheter in my back where the medication was being delivered got messed up and was hitting a nerve, and the doctor said that I had a spinal fluid leak which is causing my headache. This happened even though they did a procedure to prevent this. It still happened, but I will be okay.
So thankfully, my father in law took me this morning to Dallas and they pulled out the pain pump trial. The doctor told me I need to lay flat for 72 hours. If my headache doesn't get better, then I have to go back to get another blood patch, which will hopefully stop any spinal fluid leak. I'm hoping that I DON'T have to do that!
So I am fine, just laying flat. I can check my computer for a few minutes at a time. Please pray that I don't have to have another procedure done to fix this and that it will go away on its own.
Thanks everyone. I will update you all on how I'm doing. If I don't respond to your posts right now, it's just cause I can't get comfortable and I can't spend too much time on the computer at once. I am still positive that the pain pump is going to work because I did get relief. This will not happen with the real pump because it will be a permanent device implanted in me. I am doing fine, thanks to God and a great family.
Trust in the Lord with ALL thy heart and lean not unto thine own understanding. In ALL thy Ways ACKNOWLEDGE HIM and HE will DIRECT thy paths!!!!! Prov.3:5-6
Thursday, July 28, 2011
Update: Pain Pump
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
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 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
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