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
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