Here are a couple of pictures of us from our vacation in the SC mountains.
Monday, August 25, 2008
Saturday, August 23, 2008
Goobye Photo Op
Here are some pics from when Sarah and I spent time with my sister and her family before I left town.
Thursday, August 7, 2008
Update
Well, looking back at the blog and seeing where we've been, I find it rather difficult to believe we are now. There has been MUCH that has happened, but I'll try to be as brief and concise as possible.
First off, this is Clay and I am typing this blog from our new apartment in Broomfield, CO which is basically in-between Denver and Boulder. The decision for the move came up somewhat randomnly during some discussion post headache clinic and we'd known for a while that we were living in just about the worst area we could be, for me at least (We've probably mentioned this before, but Nashville, Knoxville, Memphis and Chatanooga are all in the top 10 worst places to live with migraine.)
That's definitely not to say that we moved solely in hopes that my head would be better. It started by me making the decision to shut down my construction business and see what I can make of myself in the "IT world", I'm not sure exactly what area as there are many I'm interested and somewhat knowledgable in. I forget how, but somehow moving to CO was mentioned. I've always wanted to live here since I can ever remember and Sarah had actually lived in Boulder for 3 years and when she moved back home was basically "resigned" to the fact that she would never live there again. So, it was mentioned and we both realized we'd like to live there so we figured....why the heck not??!? I'm looking for jobs anyway, Broomfield is a HUGE IT hub, which I hadn't realized, and I LOVE IT OUT HERE and there is definitely an element to my migraine/headache that just is not present being here instead of Nashville. Even better, I've finally found a medicinal solution to my head pain that relieves the pain without causing rebound and pretty keeps me at either an extremely low level or pain free if I regulate it correctly. Of course, there will always be the days that are bad or the headaches that just can't be "touched" by anything, but finally we have a quality of life we've never really had.
Unfortunately, Sarah is still in Nashville, working and living with her parents until I can get a job. That will suck until she gets here, because that's about the only thing that doesn't RULE about it out here. That and being away from all our friends and family of course, buy hey come out and visit, we're only about an hour from the slopes!!!!!!
I'll wrap up now, but just wanted to give an update and below I've included a little slideshow from when my dad helped me drive and move all of our belongings out west!
First off, this is Clay and I am typing this blog from our new apartment in Broomfield, CO which is basically in-between Denver and Boulder. The decision for the move came up somewhat randomnly during some discussion post headache clinic and we'd known for a while that we were living in just about the worst area we could be, for me at least (We've probably mentioned this before, but Nashville, Knoxville, Memphis and Chatanooga are all in the top 10 worst places to live with migraine.)
That's definitely not to say that we moved solely in hopes that my head would be better. It started by me making the decision to shut down my construction business and see what I can make of myself in the "IT world", I'm not sure exactly what area as there are many I'm interested and somewhat knowledgable in. I forget how, but somehow moving to CO was mentioned. I've always wanted to live here since I can ever remember and Sarah had actually lived in Boulder for 3 years and when she moved back home was basically "resigned" to the fact that she would never live there again. So, it was mentioned and we both realized we'd like to live there so we figured....why the heck not??!? I'm looking for jobs anyway, Broomfield is a HUGE IT hub, which I hadn't realized, and I LOVE IT OUT HERE and there is definitely an element to my migraine/headache that just is not present being here instead of Nashville. Even better, I've finally found a medicinal solution to my head pain that relieves the pain without causing rebound and pretty keeps me at either an extremely low level or pain free if I regulate it correctly. Of course, there will always be the days that are bad or the headaches that just can't be "touched" by anything, but finally we have a quality of life we've never really had.
Unfortunately, Sarah is still in Nashville, working and living with her parents until I can get a job. That will suck until she gets here, because that's about the only thing that doesn't RULE about it out here. That and being away from all our friends and family of course, buy hey come out and visit, we're only about an hour from the slopes!!!!!!
I'll wrap up now, but just wanted to give an update and below I've included a little slideshow from when my dad helped me drive and move all of our belongings out west!
Tuesday, March 25, 2008
Ergo, shipwreck, losses, etc. work together for the good of them that love God. Hence I infer that losses, disappointments, ill-tongues, loss of friends, houses or country, are God's workmen, set on work to work out good to you, out of everything that befalleth you. Let not the Lord's dealing seem harsh, rough, or un-fatherly because it is unpleasant. When the Lord's blessed will bloweth across your desires, it is best, in humility, to strike sail to him, and to be willing to be led any way our Lord pleaseth. It is a point of denial of yourself, to be as if you had not a will, but had made a free disposition of it to God, and had sold it over to him. And to make use of his will for your own is both true holiness, and your ease of peace. You know not what the Lord is working out of this, but you shall know it hereafter."
S. Rutherford
S. Rutherford
Happy Belated Easter
It's been awhile since I've written. I haven't really known what to write. It has been good to know so many people know what is going on with Clay and I, yet also a bit overwhelming. There is no where to hide anymore. Spreading your life's details across the Internet prevents you from staying at a safe distance from people. Now I can not hide from the fact that we deal with a difficult disease. I cannot chit chat mindlessly with friends about nothing in particular because the reality or the rawness, whichever one, seems to permeate the conversation. I don't mind talking about how Clay is doing. It simply is a blatant reminder that he still suffers, he is not completely better, and that sinking feeling that he might never be starts to set in more readily the more I talk about it.
I was strong for so long. Trudging through the battle with my head held high and my fear neatly tucked away in the darker realms of my subconscious. I have willed myself through this war, obsessively chanting Bible verses to myself as if they would somehow become me if I said them enough. Now that we are back from Chicago and have had a semblance of a "normal" life, my defenses are down and my weaknesses are made more apparent. I have begun delving into deeper questions of faith, the ever pressing question of "Why". Why must it be this way? I feel lost and confused as I try to understand a God who says He loves me yet seems to be so far away, so silent. It is a wretched feeling to pray and pray earnestly only to fear that the prayer might not be answered. "How long Lord?" Did David struggle intensely with his faith, afraid that he might walk away even though he didn't want to?
Anger is what I feel now. Anger and confusion. My mind tells me even coerces me to be thankful, to look for the little things the Lord has done. Yet I am not thankful. I am angry. I am angry that my answer isn't simple. I am angry that there are people being healed even in my own congregation at church and my husband still is in pain. I am not thankful. I feel left out, as if there is something I am doing or saying wrong that leaves us still in this situation. I am trying to walk through it, accept it, let myself be sad. My mind wills me to run away. It troys to find a place or a person that will make this all go away, make my life and its past somehow different. But the startling truth remains, this is where I am. Why do I not have it within me to cling more fully to my faith, to find joy in the circumstance?
I can sense my mind on different days coaxing me gently toward old comforts and idols promising a numbness that can ease me through life on a surface level. It is tempting, but I have been down those roads and they lead to the place I am in now...Lost. Is it possible to know Jesus and claim him as Lord yet feel lost within him? It seems contradictory to me because I have had a life changing experience with Christ in which I was found, so how can I now feel lost? I am confused and angry and hurt that the touch of his spirit is so foreign now, that the sound of his spirit's voice is no longer audible. Have I done something wrong?
All of these questions and more I ask. It is odd but it helps me to feel real. I am good at compartmentalizing. It is part of my job training and my personality. I need to feel these emotions and allow myself to grieve. Why is that so hard? Perhaps I feel that if I grieve the sorrows I've known in this life, then I'll be admitting defeat over being able to obtain a "happy good life" and end up like everyone else, grieving. Aren't we all grieving something and trying to get away? Who truly can walk completely into their grief? I've become more hardened as life has progressed because it seems inevitable that there will be difficultly, disappointment, and sorrow one after another to all be grieved.
And so with these thoughts swirling in my head I look deeper into the faith I have claimed as my guiding light and search for answers or at least peace. I have begun to read a book that highlights the core principles and doctrines of the major world religions. It is something I have always been afraid of and shied away from in fear that it would shatter the knowledge I have of Jesus. In turn it has helped me understand to the extent I have researched thus far why Christianity is so radically different from other religions and why it is so hard to accept. It is not the only reason, but it is what stands out to me the most. Jesus claimed to be God, the only God. He did not suggest there were many paths to one God as Hinduism or Buddhism might claim. He said the way was through Him. Period. Wow. Why has this never hit me until now? Either I accept what he has said as truth or I declare him a liar (or pychco). I cannot say he was a good teacher, because he did not proclaim himself to be a teacher as Buddha did. He claimed he was and is God. Easter has passed, and although I was relatively numb and zombified at church because I worked the whole night before, it had a new meaning. It no longer has tradition status in that I go to church hear about the risen Lord, but really I'm more excited about eating with family and chocolate and bunnies. It is a time of remembering, of reminding my feeble little brain that there was a man who lived and died and ROSE. He came back to life. No other god that I have read about so far has done that. Do I believe this? In my heart I can say yes, but my mind and logic respond with varying degrees of disbelief. Am I ashamed of that...no, not really. Fearful of my inability to will myself to believe?...yes! I am struggling with surrendering to the truth that I can not control everything, and that really most things are wildly out of my control. So I plead the blood of Christ and have to trust that it covers even my inability to believe in Him. As one man in the Bible prayed when asked by Jesus if he believed, I pray this too...again for this is not the first time I have said this prayer "Lord, I believe. Help my unbelief."
sarah
ps. it is 4 in the morning and I cannot sleep. Damn this night shift job! two weeks and counting to a day shift position. anyway, I am always more somber and philosophical, I have come to discover, at 4 in the morning. Sorry if this was not what you were looking for.
I was strong for so long. Trudging through the battle with my head held high and my fear neatly tucked away in the darker realms of my subconscious. I have willed myself through this war, obsessively chanting Bible verses to myself as if they would somehow become me if I said them enough. Now that we are back from Chicago and have had a semblance of a "normal" life, my defenses are down and my weaknesses are made more apparent. I have begun delving into deeper questions of faith, the ever pressing question of "Why". Why must it be this way? I feel lost and confused as I try to understand a God who says He loves me yet seems to be so far away, so silent. It is a wretched feeling to pray and pray earnestly only to fear that the prayer might not be answered. "How long Lord?" Did David struggle intensely with his faith, afraid that he might walk away even though he didn't want to?
Anger is what I feel now. Anger and confusion. My mind tells me even coerces me to be thankful, to look for the little things the Lord has done. Yet I am not thankful. I am angry. I am angry that my answer isn't simple. I am angry that there are people being healed even in my own congregation at church and my husband still is in pain. I am not thankful. I feel left out, as if there is something I am doing or saying wrong that leaves us still in this situation. I am trying to walk through it, accept it, let myself be sad. My mind wills me to run away. It troys to find a place or a person that will make this all go away, make my life and its past somehow different. But the startling truth remains, this is where I am. Why do I not have it within me to cling more fully to my faith, to find joy in the circumstance?
I can sense my mind on different days coaxing me gently toward old comforts and idols promising a numbness that can ease me through life on a surface level. It is tempting, but I have been down those roads and they lead to the place I am in now...Lost. Is it possible to know Jesus and claim him as Lord yet feel lost within him? It seems contradictory to me because I have had a life changing experience with Christ in which I was found, so how can I now feel lost? I am confused and angry and hurt that the touch of his spirit is so foreign now, that the sound of his spirit's voice is no longer audible. Have I done something wrong?
All of these questions and more I ask. It is odd but it helps me to feel real. I am good at compartmentalizing. It is part of my job training and my personality. I need to feel these emotions and allow myself to grieve. Why is that so hard? Perhaps I feel that if I grieve the sorrows I've known in this life, then I'll be admitting defeat over being able to obtain a "happy good life" and end up like everyone else, grieving. Aren't we all grieving something and trying to get away? Who truly can walk completely into their grief? I've become more hardened as life has progressed because it seems inevitable that there will be difficultly, disappointment, and sorrow one after another to all be grieved.
And so with these thoughts swirling in my head I look deeper into the faith I have claimed as my guiding light and search for answers or at least peace. I have begun to read a book that highlights the core principles and doctrines of the major world religions. It is something I have always been afraid of and shied away from in fear that it would shatter the knowledge I have of Jesus. In turn it has helped me understand to the extent I have researched thus far why Christianity is so radically different from other religions and why it is so hard to accept. It is not the only reason, but it is what stands out to me the most. Jesus claimed to be God, the only God. He did not suggest there were many paths to one God as Hinduism or Buddhism might claim. He said the way was through Him. Period. Wow. Why has this never hit me until now? Either I accept what he has said as truth or I declare him a liar (or pychco). I cannot say he was a good teacher, because he did not proclaim himself to be a teacher as Buddha did. He claimed he was and is God. Easter has passed, and although I was relatively numb and zombified at church because I worked the whole night before, it had a new meaning. It no longer has tradition status in that I go to church hear about the risen Lord, but really I'm more excited about eating with family and chocolate and bunnies. It is a time of remembering, of reminding my feeble little brain that there was a man who lived and died and ROSE. He came back to life. No other god that I have read about so far has done that. Do I believe this? In my heart I can say yes, but my mind and logic respond with varying degrees of disbelief. Am I ashamed of that...no, not really. Fearful of my inability to will myself to believe?...yes! I am struggling with surrendering to the truth that I can not control everything, and that really most things are wildly out of my control. So I plead the blood of Christ and have to trust that it covers even my inability to believe in Him. As one man in the Bible prayed when asked by Jesus if he believed, I pray this too...again for this is not the first time I have said this prayer "Lord, I believe. Help my unbelief."
sarah
ps. it is 4 in the morning and I cannot sleep. Damn this night shift job! two weeks and counting to a day shift position. anyway, I am always more somber and philosophical, I have come to discover, at 4 in the morning. Sorry if this was not what you were looking for.
Monday, February 25, 2008
doing well
I thought I'd give an update since my last blog depicted a flustered and frustrated persona. We are doing well. Although he is not completely free of pain, it is still at a diminished level, and we are happy and grateful to be in this place. We have had so much fun together this past week. Being able to go out to dinner, watch a movie, or just clown around together has brought me such joy. When you don't have the ability to do anything together, you really appreciate the small things when they are given to you.
Clay has been able to get off the recliner and start living his life! yea! And we hope it stays that way. It has been fun for me to see him up and about happy and carefree. Many people have commented that he looks taller and I believe it's because he stands with more confidence. We walked, yes walked!, to the mall the other night and went out to dinner for the first time in a LONG time. Just to be able to walk somewhere with my husband is so much fun; I can't even describe it well. We did yoga together this week, cleaned the house together (Clay's favorite), and were able to get out and go hang out with friends. I am beyond thankful.
I am now learning through this process that I have a problem with contentment, or lack of it. For so long I thought that if only Clay would get better then I could relax and just enjoy life. Well now he is better and I can feel my heart gearing up to long for and anticipate the next step. I am realizing that even in the darkest of nights there is contentment to be found, and it is not in the expectation of the outcome. The contentment is found in simply being in the Lord, resting in Him and his promises. So I am working further on letting go. Everyday I let go of the fear that Clay will wake up with a headache, and refocus on the Lord. Everyday I let go of the fear that something new and harder will happen. It seems that almost every hour I have to remind myself of Jesus' words "Who of you by worrying can add a single hour to his life?" I can chose to cower before life ahead of me in fear and worry, or I can surrender to the sovereignty of God. Most of my life is played out through petty fears. Today I chose to surrender, to let go of the things I can not control. Why is this such a hard task?!
If anything, I feel I have a new perspective in regards to the fragility and frailty of life. There are no guarantees for Jesus also said "in this life you will have trouble, but take heart I have overcome the world." I suppose I am taking heart at the moment because I feel as if Jesus has shown us through this experience a small picture of what he is continually accomplishing in the big picture of the world, as he makes all things new. Perhaps I am never content here because I am always longing for heaven.
ok, enough of my philosophical wondering. Good news is that I believe I will be able to move to the day shift by the week of May 16th!! WOO HOO!!! I'm so happy to be awake during the day!!!
sarah
Clay has been able to get off the recliner and start living his life! yea! And we hope it stays that way. It has been fun for me to see him up and about happy and carefree. Many people have commented that he looks taller and I believe it's because he stands with more confidence. We walked, yes walked!, to the mall the other night and went out to dinner for the first time in a LONG time. Just to be able to walk somewhere with my husband is so much fun; I can't even describe it well. We did yoga together this week, cleaned the house together (Clay's favorite), and were able to get out and go hang out with friends. I am beyond thankful.
I am now learning through this process that I have a problem with contentment, or lack of it. For so long I thought that if only Clay would get better then I could relax and just enjoy life. Well now he is better and I can feel my heart gearing up to long for and anticipate the next step. I am realizing that even in the darkest of nights there is contentment to be found, and it is not in the expectation of the outcome. The contentment is found in simply being in the Lord, resting in Him and his promises. So I am working further on letting go. Everyday I let go of the fear that Clay will wake up with a headache, and refocus on the Lord. Everyday I let go of the fear that something new and harder will happen. It seems that almost every hour I have to remind myself of Jesus' words "Who of you by worrying can add a single hour to his life?" I can chose to cower before life ahead of me in fear and worry, or I can surrender to the sovereignty of God. Most of my life is played out through petty fears. Today I chose to surrender, to let go of the things I can not control. Why is this such a hard task?!
If anything, I feel I have a new perspective in regards to the fragility and frailty of life. There are no guarantees for Jesus also said "in this life you will have trouble, but take heart I have overcome the world." I suppose I am taking heart at the moment because I feel as if Jesus has shown us through this experience a small picture of what he is continually accomplishing in the big picture of the world, as he makes all things new. Perhaps I am never content here because I am always longing for heaven.
ok, enough of my philosophical wondering. Good news is that I believe I will be able to move to the day shift by the week of May 16th!! WOO HOO!!! I'm so happy to be awake during the day!!!
sarah
Tuesday, February 19, 2008
Back In Nashville
We are back at home and I love the warmth! I do not love that Clay woke up this morning with congestion and a migraine. I am trying not to freak out, but I can't help but wonder if it has something to do with our condo because he has felt that his headaches are worse when he is at home. I also googled the best places to live with migraines and it just so happens that Nashville is listed as one of the top 10 WORST places to live with migraines, AND out of the 10 places list there were 4 from Tennessee. WONDERFUL!! ARRRGGG
Please pray today that Clay would be successful in aborting this migraine. We knew that he would not be migraine free forever, but were worried that he might get one coming back to our condo. My first line of defense is to have our house cleaned really really well, but our complex is old and who knows what lurks in the condos around us. Please pray that I would not get ahead of myself in feeling like we need to move TODAY. I've been praying that the Lord would lead us in the right direction. Maybe we need to move to a newer apartment? Who knows.
trying to let go and trust
sarah
Please pray today that Clay would be successful in aborting this migraine. We knew that he would not be migraine free forever, but were worried that he might get one coming back to our condo. My first line of defense is to have our house cleaned really really well, but our complex is old and who knows what lurks in the condos around us. Please pray that I would not get ahead of myself in feeling like we need to move TODAY. I've been praying that the Lord would lead us in the right direction. Maybe we need to move to a newer apartment? Who knows.
trying to let go and trust
sarah
Saturday, February 16, 2008
He's Out!
I went to the hospital this morning to find Clay up and about, smiling! His headache level this morning was a 1!!! yipee :) He was discharged today sometime around 1000. we have a maintenance plan to take home with which we hope to manage the headaches better. we also have a better understanding of his disease and feel more confident about being able to cope with it and not let it get as bad as it was. I think he will still have headaches and probably have another bout where we will need to come back to Chicago because that seems to be the long term case for most migraine sufferers like Clay. He is different somehow...more confident and happy. We both feel as if this trip up here was what we needed. The Lord really brought everything into perspective and helped us both to realize that this is something we will have to learn to live with but does not have to control us. I feel that we found the answer we were looking for. There is not an underlying cause to Clay's headaches; he simply has a vascular disease Chronic Migraine without aura. It is more severe than most people might have it, but it is good to know there are others who have walked the path we are on and are walking it now without excruciating pain. We will have to make lifestyle changes, but they will be good. The changes are all things we have integrated into our lives somewhat, but now we are understanding they will be daily things we do, not just something we do for a season to get back to "normal". Some of the changes include diet and exercise and a quieter, less busy lifestyle. Clay will probably have to change jobs, but he is ok with that. I just like to see him up and about walking around with some spunk in his step. I will confess that I am nervous about coming home and getting back to life so to speak, but am just trying to take it day by day and trust that the Lord is with us. I feel like we have a new beginning and am excited for less stressful days. Thank you so much to everyone who has been so diligent to pray for us and walk through this with us. We know we would not be where we are today without everyone's support.
We plan to come home monday night. Clay didn't want to rush home right after being in the hospital for 10 days, nor did I. He also wanted to be in town on Monday in case he needed to go back to the clinic for something. Hopefully we wont have to. We have a follow up appointment in March with his doctor up here, and will be seeing his neurologist at home to help regulate his medications. He is going home taking 4 pills a day and wearing a patch...big change from 35 pills a day! He has new medications to take when he feels like his headache is getting worse and we know better how to take those meds to get the full benefit. There is also an 800 number we can call if we have any questions, so that is encouraging. I'm glad that we came. It was obviously the next right step for us.
It will be new for me to not worry so much about Clay's head, but it will be a good thing! My work is to continue to let go of him to the Lord and not worry constantly about his head. Pray that we will be able to take home our new mindsets because it will be easy to fall right back into the same mindsets and patterns we had in Nashville. I'm sure there will be setbacks as no one is perfect and life is so unpredictable, but for now it feels like our three year crisis is over. Pray that it stays that way!
love sarah
We plan to come home monday night. Clay didn't want to rush home right after being in the hospital for 10 days, nor did I. He also wanted to be in town on Monday in case he needed to go back to the clinic for something. Hopefully we wont have to. We have a follow up appointment in March with his doctor up here, and will be seeing his neurologist at home to help regulate his medications. He is going home taking 4 pills a day and wearing a patch...big change from 35 pills a day! He has new medications to take when he feels like his headache is getting worse and we know better how to take those meds to get the full benefit. There is also an 800 number we can call if we have any questions, so that is encouraging. I'm glad that we came. It was obviously the next right step for us.
It will be new for me to not worry so much about Clay's head, but it will be a good thing! My work is to continue to let go of him to the Lord and not worry constantly about his head. Pray that we will be able to take home our new mindsets because it will be easy to fall right back into the same mindsets and patterns we had in Nashville. I'm sure there will be setbacks as no one is perfect and life is so unpredictable, but for now it feels like our three year crisis is over. Pray that it stays that way!
love sarah
Tuesday, February 12, 2008
Happy Birthday to Clay
What a way to turn 26...with a raging migraine, holed up in the hospital. But we did it up with class! Clay's mom and I decorated his room today while he was in his Biofeedback appointment. We bombarded him with silly string and confetti when he returned to his room. He was very much surprised, but is starting to catch on to my schemes to either jump out and surprise him or scare him any chance I get so my days of catching him off guard are dwindling. We found a ridiculous balloon that sang happy birthday every time we touched it. We heard it so many times that I am still singing it in my head as I type. Once I figure out how to put pictures on here I will upload some. We got a good one of the birthday boy with his birthday pin and birthday prince crown on. He wore them for less than a second and quickly took them off. Apparently Clay is not one to show off. If I ever received a birthday princess crown, I'd definitely wear it for EVERYONE to see. :) Clay's sister Alison came in today so that was an extra treat. We had headache friendly cake (no chocolate) and a headache friendly dinner (no tyramine). I decorated his IV pole, but he wouldn't take it out of his room. :) I was proud of the fact that by the end of the day confetti had made its way halfway to the nurses station. The housekeeping people are going to LOVE me.
I am happy to report that today was the best head day we've had. Today he made it down to a 6! WOOHOO I just might pee my pants the day I hear his head is under a 5. We did talk to a woman today named Ramona who has had migraines for 20 years and has been hospitalized here on the Diamond Headache unit 5 different times. She said the first time she came, she didn't believe that the doctors would be able to "break" her migraine but after the 10th day it finally gave in and she had relief for the first time. That really gave me hope because I still fear that his migraine will not "break". Please pray that it does!!
We went to some neat classes that they offer here to help the headache sufferers. Today we went to a class on pain and medication dependence which was very informational and very helpful for us to understand why the doctors prescribe the medications that they are using (and why they don't load people up with narcotics). We also went to a class for alternative methods for migraine control and learned much on meditation, guided imagery, and guided relaxation. Clay does really well in his biofeedback sessions, which are guided relaxation sessions where he is hooked up to a monitor so he can visually see a change when he is able to relax certain parts of his body. Part of biofeedback is to learn how to have control over your vasculature by mentally increasing the temperature of your hands. The doctor puts a sensor on your fingers to let you know whether or not you are able to change your body temp with your mind. Yea for Clay because he was able to raise the temperature of his hands 4 degrees today! I guess the theory is that perhaps he can control the vessels in his brain that are irritating the nerves and creating his constant headache pain. I hope all of that makes sense.
This whole trip has proved to be very helpful and encouraging in many ways. I feel the Lord's hand here very distinctly and am so grateful for the many prayers that I know we have been covered by, so thank you very much. I was reading in Luke the other day and read the parable about the persistent widow and felt encouraged to keep praying and not give up because of how gracious our Father is with his children. Thank you for being persistent in prayer for us. I am in awe at how the body of Christ has truly gathered around us like a hedge of protection, interceding for us while we are being healed, rebuilt and renewed. Thank you
love sarah
I am happy to report that today was the best head day we've had. Today he made it down to a 6! WOOHOO I just might pee my pants the day I hear his head is under a 5. We did talk to a woman today named Ramona who has had migraines for 20 years and has been hospitalized here on the Diamond Headache unit 5 different times. She said the first time she came, she didn't believe that the doctors would be able to "break" her migraine but after the 10th day it finally gave in and she had relief for the first time. That really gave me hope because I still fear that his migraine will not "break". Please pray that it does!!
We went to some neat classes that they offer here to help the headache sufferers. Today we went to a class on pain and medication dependence which was very informational and very helpful for us to understand why the doctors prescribe the medications that they are using (and why they don't load people up with narcotics). We also went to a class for alternative methods for migraine control and learned much on meditation, guided imagery, and guided relaxation. Clay does really well in his biofeedback sessions, which are guided relaxation sessions where he is hooked up to a monitor so he can visually see a change when he is able to relax certain parts of his body. Part of biofeedback is to learn how to have control over your vasculature by mentally increasing the temperature of your hands. The doctor puts a sensor on your fingers to let you know whether or not you are able to change your body temp with your mind. Yea for Clay because he was able to raise the temperature of his hands 4 degrees today! I guess the theory is that perhaps he can control the vessels in his brain that are irritating the nerves and creating his constant headache pain. I hope all of that makes sense.
This whole trip has proved to be very helpful and encouraging in many ways. I feel the Lord's hand here very distinctly and am so grateful for the many prayers that I know we have been covered by, so thank you very much. I was reading in Luke the other day and read the parable about the persistent widow and felt encouraged to keep praying and not give up because of how gracious our Father is with his children. Thank you for being persistent in prayer for us. I am in awe at how the body of Christ has truly gathered around us like a hedge of protection, interceding for us while we are being healed, rebuilt and renewed. Thank you
love sarah
Monday, February 11, 2008
Sorry It has been a couple of days. Not much happens at the hospital on the weekends. Clay has been receiving a medication called DHE through his IV. He received 9 doses of it over the past 2 and a half days. It is supposed to help break the migraine cycle. His headache has not dipped below a level 7 on the pain scale 0-10. Last night when we left it had ramped back up to a 9. Now they are alternating between giving him magnesium and depacon through his IV every 6 hours. He had received two treatments by the time we left last night. I haven't spoken with him this morning to see if he is feeling any better. He hasn't been sleeping well, so we found out through some other long time Diamond Headache Clinic-ers to ask for something called the triple shot. I don't know if he got that last night or not, but his doctor did change his sleeping medication, so hopefully he received more rest last night.
Today we start one of his long-term preventative medications Emsam. It is an MAOI in a patch form. Hopefully his skin and body will tolerate it. He will have to be careful about not eating foods with tyramine in them because it can cause a severe reaction with the medication. Please pray for his liver. The doctor told him yesterday morning that his liver enzymes were elevated. We don't know what it is from yet, so they are doing more tests. More than likely it is from a medication he is taking. This is not the first time his liver enzymes have been elevated. We corrected it last time with diet changes. Pray he makes good dietary choices!
Overall he is doing well. Time seems to crawl by in the hospital. There is a patient lounge we hang out in and do puzzles and talk with other patients. Clay's floor is dedicated to just headache patients. It is oddly comforting to meet other people who have gone through and are dealing with the same issues we are. You do not ask these patients whether or not they have headaches... you assume they do and ask what "level" they are at, meaning pain level. It breaks my heart and the Lord has lead me to be more diligent in prayer not only for Clay but for Jeff, Joy, Emily, and a little 14 year-old girl whose name I can not remember. We met Jeff the first day we were at the hospital. He is going on day 12. He is 10 years older than Clay, but they have a lot in common. He is a contractor and hasn't been able to work for 6 months just as Clay has not been able to. His situation is harder than ours in that he has 4 children, no insurance, and has more difficult headaches to control (Chronic Cluster Headaches). Please pray for him and his family. He is so nice and has been reaching out to Clay and us. He shared his deep dish Chicago pizza the first night with Clay since the hospital food is so yummy.
It has been therapeutic for me to be at the hospital and talk with some of these people to see how their families cope. For some patients this is their 2nd or 3rd time to be at the hospital. I am realizing that this whole experience is teaching Clay and I how we will manage his migraines. It might not get rid of them, but hopefully we can manage them better than they have been. It seems as if the doctors will send people home with maintenance plans and when those are not working the patient will come back to the hospital to get the migraine under control again, change the plan and then go home. So we might be looking at a long term relationship with Chicago. Perhaps we will have to purchase a second home! :) ha ha
Ok, I am off to take a taxi cab BY MYSELF to meet a good friend who was in our wedding, and I don't think I've seen her since then, so I am thankful for this opportunity. We are taking her son to wiggle worms, whatever that is. Oh how I wish my days were full of going to wiggle worms, changing diapers, and worrying about what to cook for dinner! Perhaps with this headache clinic all those things will be on the horizon! yikes
sarah
Today we start one of his long-term preventative medications Emsam. It is an MAOI in a patch form. Hopefully his skin and body will tolerate it. He will have to be careful about not eating foods with tyramine in them because it can cause a severe reaction with the medication. Please pray for his liver. The doctor told him yesterday morning that his liver enzymes were elevated. We don't know what it is from yet, so they are doing more tests. More than likely it is from a medication he is taking. This is not the first time his liver enzymes have been elevated. We corrected it last time with diet changes. Pray he makes good dietary choices!
Overall he is doing well. Time seems to crawl by in the hospital. There is a patient lounge we hang out in and do puzzles and talk with other patients. Clay's floor is dedicated to just headache patients. It is oddly comforting to meet other people who have gone through and are dealing with the same issues we are. You do not ask these patients whether or not they have headaches... you assume they do and ask what "level" they are at, meaning pain level. It breaks my heart and the Lord has lead me to be more diligent in prayer not only for Clay but for Jeff, Joy, Emily, and a little 14 year-old girl whose name I can not remember. We met Jeff the first day we were at the hospital. He is going on day 12. He is 10 years older than Clay, but they have a lot in common. He is a contractor and hasn't been able to work for 6 months just as Clay has not been able to. His situation is harder than ours in that he has 4 children, no insurance, and has more difficult headaches to control (Chronic Cluster Headaches). Please pray for him and his family. He is so nice and has been reaching out to Clay and us. He shared his deep dish Chicago pizza the first night with Clay since the hospital food is so yummy.
It has been therapeutic for me to be at the hospital and talk with some of these people to see how their families cope. For some patients this is their 2nd or 3rd time to be at the hospital. I am realizing that this whole experience is teaching Clay and I how we will manage his migraines. It might not get rid of them, but hopefully we can manage them better than they have been. It seems as if the doctors will send people home with maintenance plans and when those are not working the patient will come back to the hospital to get the migraine under control again, change the plan and then go home. So we might be looking at a long term relationship with Chicago. Perhaps we will have to purchase a second home! :) ha ha
Ok, I am off to take a taxi cab BY MYSELF to meet a good friend who was in our wedding, and I don't think I've seen her since then, so I am thankful for this opportunity. We are taking her son to wiggle worms, whatever that is. Oh how I wish my days were full of going to wiggle worms, changing diapers, and worrying about what to cook for dinner! Perhaps with this headache clinic all those things will be on the horizon! yikes
sarah
Friday, February 8, 2008
Hello From Chicago
My flight was cancelled on Wednesday night, so I flew in yesterday morning and met Clay's dad at the airport. Riding in taxi cabs is smelly and awkward, and also something to check off the "never have I ever" list.
His appointment went well. Thank you to those of you praying during it. We were there for a couple hours. Dr. Freitag is very nice, very smart, and will be seeing Clay everyday that we are here. We checked him into St. Joseph's hospital last night around 0630. The floor he is on is a dedicated floor for the Diamond Headache Clinic. So every other patient up there is a headache patient. I kept wanting to ask other patients if their head was hurting RIGHT NOW to see if anyone else up there was like Clay. I didn't because I figured that would be awkward and wouldn't really be helpful anyway.
The first order of business was to draw labs, have vital signs taken, and start an IV. After the nurse missed twice, it took all I had in me not to offer to start one myself. Not my place. :) Clay will be receiving IV meds to try and reduce the severity of his migraine now. Today there are all sorts of educational classes we are going to go to with him. He's going to see a GI specialist, and a specialist to do something for his neck pain. In a few days he'll start a medication that will be administered through a skin patch. It is absorbed better through the body in this form as opposed to taking it in pill form. Please pray that his skin will not be too sensitive for this drug. He has sensitive skin and as soon as the doctor said "you shouldn't have a problem unless you have super sensitive skin" I thought...poop. But maybe it will be ok.
Alright, that is all I know for now. I need to go fix my hair with my new super-style hair straightener; Merry Christmas Sarah. I think we are planning to rent a car...yipee...cause last night I truly almost vomited in one of the cabs because it smelled so bad. Lord have mercy!
sarah
His appointment went well. Thank you to those of you praying during it. We were there for a couple hours. Dr. Freitag is very nice, very smart, and will be seeing Clay everyday that we are here. We checked him into St. Joseph's hospital last night around 0630. The floor he is on is a dedicated floor for the Diamond Headache Clinic. So every other patient up there is a headache patient. I kept wanting to ask other patients if their head was hurting RIGHT NOW to see if anyone else up there was like Clay. I didn't because I figured that would be awkward and wouldn't really be helpful anyway.
The first order of business was to draw labs, have vital signs taken, and start an IV. After the nurse missed twice, it took all I had in me not to offer to start one myself. Not my place. :) Clay will be receiving IV meds to try and reduce the severity of his migraine now. Today there are all sorts of educational classes we are going to go to with him. He's going to see a GI specialist, and a specialist to do something for his neck pain. In a few days he'll start a medication that will be administered through a skin patch. It is absorbed better through the body in this form as opposed to taking it in pill form. Please pray that his skin will not be too sensitive for this drug. He has sensitive skin and as soon as the doctor said "you shouldn't have a problem unless you have super sensitive skin" I thought...poop. But maybe it will be ok.
Alright, that is all I know for now. I need to go fix my hair with my new super-style hair straightener; Merry Christmas Sarah. I think we are planning to rent a car...yipee...cause last night I truly almost vomited in one of the cabs because it smelled so bad. Lord have mercy!
sarah
Tuesday, February 5, 2008
Quick Update
In about an hour Clay and his mom are leaving for Chicago. We decided last night after watching the weather forecast that it would be better to play it on the safe side and have them fly out early. A winter storm is supposed to hit Chicago tonight, and we were worried that our flights tomorrow would be delayed or cancelled and thus prevent us from making it to our precious appointment! The appointment is Thrusday at 1:00. I will still fly out tomorrow. I am supposed to work again tonight but am first on the list to get called off if today is not a busy trauma day in Nashville. Pray that I do, so I can pack and get myself ready tonight. Please also pray for Clay. He is in alot of pain this morning and didn't sleep well last night. It seems the pain medicine and all of the medicine to stop the migraine is not doing the job well enough. Pray he can make it two more days until we see the doctor at the clinic. Please pray for wisdom insight and whatever your heart desires for Dr. Frytag (the doc we're going to see). His neurologist here says he is one of the top dudes at the clinic and has been there for 25 years (no, she did not actually say dudes...she is very professional). That makes me happy. I am nervous and a little bit scared. It is quite frustrating to have his pain meds not working the way I'd hoped. I started to feel anger toward God this morning and confessed that I feet like he thwarts every plan we've made and that it seems as if his hand is against us sometimes. I was quickly reminded by the Spirit of the verse somewhere in the Bible that states: "If God is for us, who can be against us." Please God be for us! Ok, I need to finish getting my husband ready to leave.
thank you for your prayers.
sarah
ps. If i had not proof-read this, it would have said twarts instead of thwarts. Twarts sounds funny in my head. I've definitely been awake too long. good night.
thank you for your prayers.
sarah
ps. If i had not proof-read this, it would have said twarts instead of thwarts. Twarts sounds funny in my head. I've definitely been awake too long. good night.
Monday, February 4, 2008
Me Again
Ok so I'm still awake, but I am in laying in bed (is it laying or lying?). I always read from a devotional before I go to sleep. I ABSOLUTELY love the devotional I have now, given to me from a good friend. It is "Jesus Calling: Enjoying Peace in His Presence" by Sarah Young. Today's seems so pertinent to mine and Clay's situation that I just have to share it. She writes as if Jesus is speaking...
"Bring me your weakness, and receive My Peace. Accept yourself and your circumstances just as they are, remembering that I am sovereign over everything. Do not wear yourself out with analyzing and planning. Instead, let thankfulness and trust be your guides through this day; they will keep you close to ME. As you live in the radiance of My Presence, My Peace shines upon you. You will cease to notice how weak or strong you feel, because you will be focusing on Me. The best way to get through this day is step by step with Me. Continue this intimate journey, trusting that the path you are following is headed for heaven." Numbers 6:24-26
I love it.
goodnight...or good-day for you who live in the sunshine. Hopefully I'll be back in your world soon. I got an email from work about maybe switching to the day shift. Yipee!
"Bring me your weakness, and receive My Peace. Accept yourself and your circumstances just as they are, remembering that I am sovereign over everything. Do not wear yourself out with analyzing and planning. Instead, let thankfulness and trust be your guides through this day; they will keep you close to ME. As you live in the radiance of My Presence, My Peace shines upon you. You will cease to notice how weak or strong you feel, because you will be focusing on Me. The best way to get through this day is step by step with Me. Continue this intimate journey, trusting that the path you are following is headed for heaven." Numbers 6:24-26
I love it.
goodnight...or good-day for you who live in the sunshine. Hopefully I'll be back in your world soon. I got an email from work about maybe switching to the day shift. Yipee!
Windy City Here We Come
I have been up all night so this will be short, so I can get maximum sleep time before I go back to work tonight. We received the results from the test, and Clay does NOT have acromegaly. Yes I'm disappointed, but also glad to know that my husband does not have an endocine disorder because that would not be something to be wishful for. I think we were just hoping for a specific answer. So....we are back on the plan to go to Chicago on Wednesday. Please pray for Clay because I know he will be disappointed. He is asleep and doesn't know yet.
I have been receiving much encouragement from the word recently due to some people who have sent me some specific verses, so thank you to those people. The Lord has been very alive to me for the past 24 hours. 1 Peter has proved to be very comforting, so have many passages from Isaiah.
Clay has an appointment with his neurologist today at 1:00. I'll try and post before I go to work tonight to let ya'll know what she says regarding him not having acromegaly.
sarah
I have been receiving much encouragement from the word recently due to some people who have sent me some specific verses, so thank you to those people. The Lord has been very alive to me for the past 24 hours. 1 Peter has proved to be very comforting, so have many passages from Isaiah.
Clay has an appointment with his neurologist today at 1:00. I'll try and post before I go to work tonight to let ya'll know what she says regarding him not having acromegaly.
sarah
Friday, February 1, 2008
A day from H.E. double hockey sticks
Somedays you believe that life can not possibly get harder or more harrowing than it already is...and then it does. Somedays you believe you cannot possibly give more than you already have...and then you do. Somedays you believe that God cannot possibly let you sink any further into the pit of mire before he rescues you...and then he does. So what do you do when life gets harder? What do you do when feel you have nothing left to give? What do you believe when you feel like you are just a hand's reach too far away to hold onto God? You jump a little higher and grab on. You give the nothing you have because even that is something. You trust when God said "this too shall pass",that even THIS TOO SHALL PASS. You have hope. You trust that the God of the universe can bring good out of any situation, even your very own. You trust that God is there because He says He is even though you can't feel, see, hear, taste, smell, or even sense Him. You pray to God that he HEARS you, and that he hears your prayers even when they seem to float into the air, slam into the ceiling, and fall right back down on the floor into a puddle of prayer goo. Sometimes I'd like to get a little postcard in the mail that lets me know a prayer has been received into heaven even if there is no answer yet. It might perhaps say "Dear Sarah, We are currently receiving a high number of prayers. Yours requests have been made known to us. An angel will be sent out shortly to assess your situation. Thank you for continuing your patronage." You receive the postcard and you think "good, a little validation."
02.01.08 0715 am
Got off work. Walked to the Eskind Center at Vanderbilt to meet Clay for his definitive blood test to rule out acromegaly.
0830 am
Sat in a room while he drank orange glucola and had a series of blood drawn over 2 and a half hours.
0845 am
Called Dr. Brandes's (his neurologist) office to ask what to do. "My husband continues to be in severe pain with no relief, not sleeping, not doing well. Treatments and options are being pursued, but I NEED something to hold him over until we have a definitive plan. " Office Nurse: "Let me speak to the NP, and call you back".
0900 am
ring ring... Office Nurse: "NP says we do not have the IV drugs you might be needing." Me: "do I take him to the ER or do I need to find a different doctor?" Office Nurse: "don't know". Clay: in agony
1100 am
tried to speak with the endocrinologist at the office where the blood was being drawn. Dr. said that we needed to go to the neurologist for help with pain medicine. another dead end. Clay still in intense pain. I am livid, frustrated, and running on pure adrenaline and caffiene.
1130 am
Testing is over. No help yet for Clay. Phone call to his primary care physician. Spoke with the nurse, explained situation...husband in pain...cannot go on another minute without relief. Nurse Will speak to Dr. and call back. FORGET IT! Load Clay in oversized truck. Drive to Primary Care Doctor's office at Baptist. Dr. is a saint. Speaks to us and encourages us to go to Dr. Brandes's office, which is in Baptist Hospital.
1200 pm
Clay has to sit and eat something...feeling nauseated and in too much pain. Eat a quick lunch. Call Clay's mom. "We need you, come to Dr. Brandes's office." Sleep deprived, angry wife is about to take prisoners....need back up.
1230 pm
Arrive at office. Dr. Brandes is not in office, but has called. "Get Clay in." Wait to see the nurse practitioner. Feeling anxious and operating off no sleep. No sleep factor starting to kick in.
0130 pm
Ushered into a room. NP arrives. Apologies for earlier mix up and poor communication when we called at 0845.
0200 pm
Clay receives IV medication and is able to fall asleep. Sleeps in doctor's office for an hour. Prescriptions for medication to make it through the weekend are received until a follow up visit on Monday.
0330 pm
Clay is escorted from neurologists office in a wheelchair. Headache level has dropped from an excruciating 10 to a 7.
0400 pm
Drive back to Vanderbilt to fill prescriptions and call in sick for work, for which I am supposed to be at in 2 and a half hours. I am still wearing my same scrubs from the previous night. Trauma Unit nurses and management...awesome...very understanding.
The Lord is good.
0530 pm
Receive much needed and extremely difficult to obtain pain medications and other injections to take home and give Clay on a schedule to hopefully abort the migraine or at least continue to relieve intensity.
0545 pm
Arrive at home. Been gone for over 24 hours. Mission accomplished. I finally have pain mediction. I finally have something to give my husband to temporarily relieve his pain when he tells me it is so unbearable that he cannot take it anymore. I do not feel completely helpless anymore....at least for a few days until the narcotics wear off.
0600pm
Day from Hell officially over. Broke down and sobbed. Apparently I am indeed still human. Mom here to comfort. Praise God.
0730pm
Cadillac Margarita at La Paz with my mom. Thank God for moms.
02/02/2008 0130
woke up unsettled. Clay awake and needing pain medicine. tended to my husband. needed to blog. needed to read the Word and strengthen my weak soul with His everlasting strength and love.
We find out monday the results of Clay's test from earlier today, well yesterday now at this point. If the results are positive then we are looking at a possible surgery. If they are negative we pack for Chicago and fly out wednesday. "This too shall pass."
Amen Lord
02.01.08 0715 am
Got off work. Walked to the Eskind Center at Vanderbilt to meet Clay for his definitive blood test to rule out acromegaly.
0830 am
Sat in a room while he drank orange glucola and had a series of blood drawn over 2 and a half hours.
0845 am
Called Dr. Brandes's (his neurologist) office to ask what to do. "My husband continues to be in severe pain with no relief, not sleeping, not doing well. Treatments and options are being pursued, but I NEED something to hold him over until we have a definitive plan. " Office Nurse: "Let me speak to the NP, and call you back".
0900 am
ring ring... Office Nurse: "NP says we do not have the IV drugs you might be needing." Me: "do I take him to the ER or do I need to find a different doctor?" Office Nurse: "don't know". Clay: in agony
1100 am
tried to speak with the endocrinologist at the office where the blood was being drawn. Dr. said that we needed to go to the neurologist for help with pain medicine. another dead end. Clay still in intense pain. I am livid, frustrated, and running on pure adrenaline and caffiene.
1130 am
Testing is over. No help yet for Clay. Phone call to his primary care physician. Spoke with the nurse, explained situation...husband in pain...cannot go on another minute without relief. Nurse Will speak to Dr. and call back. FORGET IT! Load Clay in oversized truck. Drive to Primary Care Doctor's office at Baptist. Dr. is a saint. Speaks to us and encourages us to go to Dr. Brandes's office, which is in Baptist Hospital.
1200 pm
Clay has to sit and eat something...feeling nauseated and in too much pain. Eat a quick lunch. Call Clay's mom. "We need you, come to Dr. Brandes's office." Sleep deprived, angry wife is about to take prisoners....need back up.
1230 pm
Arrive at office. Dr. Brandes is not in office, but has called. "Get Clay in." Wait to see the nurse practitioner. Feeling anxious and operating off no sleep. No sleep factor starting to kick in.
0130 pm
Ushered into a room. NP arrives. Apologies for earlier mix up and poor communication when we called at 0845.
0200 pm
Clay receives IV medication and is able to fall asleep. Sleeps in doctor's office for an hour. Prescriptions for medication to make it through the weekend are received until a follow up visit on Monday.
0330 pm
Clay is escorted from neurologists office in a wheelchair. Headache level has dropped from an excruciating 10 to a 7.
0400 pm
Drive back to Vanderbilt to fill prescriptions and call in sick for work, for which I am supposed to be at in 2 and a half hours. I am still wearing my same scrubs from the previous night. Trauma Unit nurses and management...awesome...very understanding.
The Lord is good.
0530 pm
Receive much needed and extremely difficult to obtain pain medications and other injections to take home and give Clay on a schedule to hopefully abort the migraine or at least continue to relieve intensity.
0545 pm
Arrive at home. Been gone for over 24 hours. Mission accomplished. I finally have pain mediction. I finally have something to give my husband to temporarily relieve his pain when he tells me it is so unbearable that he cannot take it anymore. I do not feel completely helpless anymore....at least for a few days until the narcotics wear off.
0600pm
Day from Hell officially over. Broke down and sobbed. Apparently I am indeed still human. Mom here to comfort. Praise God.
0730pm
Cadillac Margarita at La Paz with my mom. Thank God for moms.
02/02/2008 0130
woke up unsettled. Clay awake and needing pain medicine. tended to my husband. needed to blog. needed to read the Word and strengthen my weak soul with His everlasting strength and love.
We find out monday the results of Clay's test from earlier today, well yesterday now at this point. If the results are positive then we are looking at a possible surgery. If they are negative we pack for Chicago and fly out wednesday. "This too shall pass."
Amen Lord
Thursday, January 31, 2008
Update
Hey, Clay here again, just wanted to give a little update on today's doctor visit. Overall it was a good visit, very nice doctor and he actually did his endocrinology fellowship underneath a long time family friend at Duke University. Our families have gone to church together since I was a wee little one. He's the same doctor who suggested getting this who pituitary thing looked into. Interesting how everything has played out up to this point. Anyways, this was basically a cursory/draw a bunch of blood exam. I'll go in early next morning for another blood test and then it will be a matter of getting all the lab results to see what they turn up. The one I'm going in in the morning for is basically the "have it or not" blood test that will determine if I do have the condition acromegaly. The MRI shows an enlarged pituitary, so if acgromegaly is diagnosed than the next step would be a closer inspection of the film and determining if there is any place on the gland that is the cause. If so surgery, which is routine and that would be that and the result would HOPEFULLY be complete relief, though even if I still have migraine for whatever other reason, than the treatment would still be likely to greatly decrease the intensity and frequently. Anyway, I'm not really worried/thinking about anything past lab results. Obviously my hope is that I have the condition, they do their thing and then it's all said and done, no more pain. Where I'm at mentally is that we're just waiting for more test results that will just rule out the next possible cause and have to continue a possibly never-ending search. Only time will tell and God's doing His thing and as was fleshed out in meeting with my pastor today, I don't like where I am, and I'm definitely not happy about it, but all I have is Christ to lean on. And there it is. So in short, keep praying and we should have all the lab results back on Monday. Now, it's off to watch the season premiere of Lost!
Tuesday, January 29, 2008
A Glimmer of Hope
Please please pray for an appointment Clay has on Thursday. He is going to see an endocrinologist. We think we have found the reason for his migraines. His doctor called this morning to give us the results of a blood test he had done last week and the MRI he had on Saturday. It seems as if Clay might have a condition called acromegaly, and it might be the main culprit in his constant migraine. If so, there is a medication he can take and control the condition. AND...according to his neurologist...it COULD significantly reduce if not get rid of his headaches if it is related to them. PRAISE GOD!!! Please pray that this is our answer and that a cure for Clay is as easy as taking the right medication. I am hopeful but trying not to get ahead of myself. Clay keeps reminding me that even though it is exciting to think that this might be the answer, he still has the headache.
This could possibly postpone our Chicago trip. We don't know at this point how long it takes the medication to work or when we will see a change, if any, in his headaches. Please pray that we would see a change and SOON!! If this does not help we will still probably go to the clinic just at a later date.
YEA!
sarah
This could possibly postpone our Chicago trip. We don't know at this point how long it takes the medication to work or when we will see a change, if any, in his headaches. Please pray that we would see a change and SOON!! If this does not help we will still probably go to the clinic just at a later date.
YEA!
sarah
Sunday, January 27, 2008
From the Horse's Mouth
Hello all, this is Clay and I just wanted to share a few thoughts. It's difficult to describe or begin to explain chronic pain, how it effects one's life and soul and the lives of those close to you. I think I'm only beginning to realize the true impact it's had on my life and those around me, particularly my amazing wife Sarah. She has been, and continues to be, a truly wonderful example of Christ's love and persistence and I can feel Him at work in me through her love. The flip-side of that coin is that I can also see how much of an impact this is had on her life and it's hard not to feel guilty or to feel like a burden. It's also very hard to work through the bitterness and all that comes along with having to go through this whole ordeal and having to carry this incredible pain for so long. I struggle with the mindset that I will never be free and find it hard to turn and cry out to God when it seems like all of my cries so far have gone unanswered. I think there are many great steps being taken and I'm very thankful for those who have been praying, encouraging and particularly my and Sarah's parents who have come alongside and eased a great deal of the pressure and lightened the load for both Sarah and me. At the same time I battle with not letting myself get my hope built up by anything because it will only lead to more let downs in the end. I feel good and encouraged with the steps that have been taken, the tests that have been performed and going to the clinic in February. At the same time, the more steps we do take and the more possible causes we rule out, the more frightening it becomes and the more it seems like I will never be free from this burden while still on this earth. I know that this fear something that the enemy can easily get to me through, and it's in these times that I am most thankful for all those that are praying, surrounding us and holding me up through His Spirit, because I have no doubt that I am His and He is at work. It can only be through His Spirit and those prayers that my faith is held strong because at present I have not the strength, boldness or courage to approach His throne with any type of hope or trust. It is only with a desperate bitterness and a seemingly hopeless, burning desire coupled with anger and fear that I am able to look upon and turn to Him. I know He is at work, even in this, it is just an incredibly burdening and difficult place to be. All I ask of any who read is for continued prayer and encouragement. It may seem that it falls upon deaf ears. I know I've felt, and most of the time feel, that my prayers have gone unheard and unanswered but I can also bear witness that this is not true. I know I am His, I am sure of His love and His Spirit at work through all of this, and the only way I can possibly feel this way while in the hell that I am currently living, is through the power of His Spirit at work within me and through the prayers of all the saints surrounding me. So for that, I thank Him, I thank you for your prayers and I only ask that you continue to fight the good fight, because at present I have not the strength to fight, because what little I do have left is being spent just trying to stay afloat.
Thursday, January 24, 2008
A "TEE"
Clay went with his mom today to have a transesophageal echocardiogram aka a TEE. I believe that is the correct name. It is a more specific test to look for heart abnormalities that could possibly be linked to his migraines and hopefully open up an avenue for treatment and healing. I am at home trying to rest because I work tonight and the next two nights, but it is hard for me to relax. I feel a deep sadness and a sense of defeat which sounds odd because of the forward movement we are beginning to take. I feel as if I have spread the load around to others who are stepping in an helping, so I feel a sense of relief. On the other hand, now there is room for the grieving to begin. What a trial this has been, and I can not even begin to imagine how hard it has been for Clay to endure such intense pain for so long. It is hard for me to rejoice in the steps that are being taken such as going to the clinic. I feel as if I cannot do so until I begin to see relief for him. Please do not misinterpret this as ungratefulness. I am unbelievably grateful to be going to Chicago, but hate that we even have to go at the same time. I want a magic button to press every time he tells me that his head hurts and make it go away, but alas there is none to be found. Some days I do not even have the energy to pray for healing. It is all I can muster up just to ask for the grace to make it through another day. The Lord knows the desire of my heart, how can I plead more earnestly than I already have? What more is there to ask than for mercy? I feel as if I have been flooding my brain with scripture and truth trying to will myself to believe it as true. But great and merciful God, how can I continue believing you are a healer when there is not healing to be found?
It sounds as if I am giving up, and I am not. I simply feel crushed under the weight of a trial that we are not strong enough to bear. I am finding that when God said to trust him, he meant not for us to trust him in the good times because of course it is easy to do so when everything is candy coated and happy. He meant for us to trust that he is present even during the times when you feel like you might spiral down into the darkest pit where no one might ever find you. "Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there." (Psalm 139)
I have to continue believing that good can and will come out of this as the Lord says in Romans 8 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." The tears only last for a night and rejoicing comes in the morning.
Paul says in Philippians to "Rejoice in the Lord always. I will say it again: Rejoice! ...The Lord is near." Always? Really, Lord? What am I rejoicing for...this present suffering...or am I rejoicing in what the Lord will do and what is to come? If the Lord is who he says he is in Exodus, "The Lord The Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin," Then yes I will find it in myself to give him praise even in the midst of this trial, even on the days that I feel the most defeated because if he is true to his very nature, then he will not leave us in this place. He will come with healing on his wings and turn our sorrows into rejoicing. And that will be worth celebrating.
sarah
It sounds as if I am giving up, and I am not. I simply feel crushed under the weight of a trial that we are not strong enough to bear. I am finding that when God said to trust him, he meant not for us to trust him in the good times because of course it is easy to do so when everything is candy coated and happy. He meant for us to trust that he is present even during the times when you feel like you might spiral down into the darkest pit where no one might ever find you. "Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there." (Psalm 139)
I have to continue believing that good can and will come out of this as the Lord says in Romans 8 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." The tears only last for a night and rejoicing comes in the morning.
Paul says in Philippians to "Rejoice in the Lord always. I will say it again: Rejoice! ...The Lord is near." Always? Really, Lord? What am I rejoicing for...this present suffering...or am I rejoicing in what the Lord will do and what is to come? If the Lord is who he says he is in Exodus, "The Lord The Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin," Then yes I will find it in myself to give him praise even in the midst of this trial, even on the days that I feel the most defeated because if he is true to his very nature, then he will not leave us in this place. He will come with healing on his wings and turn our sorrows into rejoicing. And that will be worth celebrating.
sarah
Wednesday, January 23, 2008
A Plan
Yesterday was our appointment with Clay's neurologist, Dr. Brandes. Clay's mom and I were there with his dad on speaker phone. We had been praying for specific things such as coming off the medicines and going to the clinic. The meeting with the doctor went well. She was supportive, but tried to keep us anchored in reality. She is happy to send us to the Diamond Headache Clinic, but cautioned us that Clay can go and perhaps start to feel better there, but then come home and fall back into his headache pattern, simply because while at the clinic he will be in a controlled environment and once at home it is obviously not as controlled. At this point we do not care what happens afterward. We are going forward with the clinic. We have an appointment on February the 7th at 1:00 to see one of the best doctors at the clinic. Also, Clay's doctor gave us a schedule so he can taper down and come off of his medications! He is very happy about this because the medicines give him such terrible side effects, so we look forward to no more side effects! He will have successfully tapered off all of his medicines by the 7th. Please pray that the tapering will not be too unbearable, as there will be side effects of coming off so many medicines. We are also going to have new MRI's taken of clay's head and spine before we go to the clinic. So that in a nut shell is our current plan. The Lord has really ordained the whole thing. The timing is impeccible and it is almost too good to believe. For example, I was supposed to enter a schedule in the computer at work a couple weeks ago for this coming February and March, but for some reason I was unable to do so. Now we know when we are going to Chicago, and my manager called today to help me figure out my schedule. All this to say that I will be able to go to Chicago and stay almost the whole time Clay is there without having to use any vacation days or take time off. My manager is very very willing to work with me if we end up needing to stay longer than a week. I am more than grateful for ALL of this. It takes off such a huge load in terms of figuring out work. I also believe that the appointment day is a miracle because it will be right after Clay has come off his medications so he will be a clean slate when we go. The 7th is on a thursday and it is the easiest day of the week for Clay's dad to get off of work, so that is another blessing ordained by God. This all seems to be coming together so beautifully and I truly believe it is because of all the prayers we have received. I am beyond humbled and grateful for everyone who is so concerned and committed to us through this. It has been a long long hard road and I am very thankful to have such wonderful friends and family.
Clay reduced some of his medications last night and woke up this morning with a headache level of 9. To put that in perspective the pain scale we use is from 0-10. 0 being no pain and 10 being unbearably debilitating pain. He never rates his head a 10 because one never knows if it might get worse, so 9 is basically Clay's 10. Most mornings he wakes up and his pain level is between a 6-7, and by each evening it ramps up to a 8-9. There are many days that he wakes up with an 8 or 9 and it remains this way for a couple of days, so it is hard to say that this morning's 9 is due to the decrease in meds or just another 9 day. My worry is that his head will be worse as we come off the meds, but as he says, it is always terrible so what difference does it make medication or not. I am trying not to give in to my worst fear of his head never getting better. Please pray that we start to see change soon. Some days it seems too much to bear. Clay's mom will be staying through the weekend to help us while he tapers down because I have to go back to work this weekend. We are grateful for her and all she has done to help us this past week. Also she will be staying in Chicago with us when we go, for which I am grateful so that he nor I will be alone.
I'll keep this updated better as we get closer to the time so that you will all be informed. Thank you for caring so much about us. We definitely feel it.
love sarah
Clay reduced some of his medications last night and woke up this morning with a headache level of 9. To put that in perspective the pain scale we use is from 0-10. 0 being no pain and 10 being unbearably debilitating pain. He never rates his head a 10 because one never knows if it might get worse, so 9 is basically Clay's 10. Most mornings he wakes up and his pain level is between a 6-7, and by each evening it ramps up to a 8-9. There are many days that he wakes up with an 8 or 9 and it remains this way for a couple of days, so it is hard to say that this morning's 9 is due to the decrease in meds or just another 9 day. My worry is that his head will be worse as we come off the meds, but as he says, it is always terrible so what difference does it make medication or not. I am trying not to give in to my worst fear of his head never getting better. Please pray that we start to see change soon. Some days it seems too much to bear. Clay's mom will be staying through the weekend to help us while he tapers down because I have to go back to work this weekend. We are grateful for her and all she has done to help us this past week. Also she will be staying in Chicago with us when we go, for which I am grateful so that he nor I will be alone.
I'll keep this updated better as we get closer to the time so that you will all be informed. Thank you for caring so much about us. We definitely feel it.
love sarah
Wednesday, January 16, 2008
Courage of the Saints
I have been reading other people's blogs recently who are going through great challenges (mainly medical) as we are and am overwhelmed to find such steadfast faith in many of them. I wonder if they always feel confident in the Lord or perhaps they only write in their blogs on good days? I on the other hand feel like I have mini freak outs quite frequently. Of course they are always on the inside because surely I would be arrested if they were to manifest themselves outwardly! Never fear those of you who are psychologically savvy, I am in counseling where I am learning how to appropriately "deal" with my emotions. I simply say all of this to confess that I am human and even though I trust the word of God, I still struggle within it. In this I know I am not alone.
I found myself thinking of David today when he exclaimed "Why are you downcast O my soul?" because he knew he had the God of the universe on his side, yet he still struggled with feeling down and out. Good things are beginning to happen to us, but I think the weight of the struggle it has been for the past couple of years is starting to finally come crashing down on me. I am grateful beyond words that my loving mother in law will be coming in town this weekend for emotional and physical support. Clay has an appointment on tuesday the 22nd, and the three of us plus his dad via conference call will meet with his doctor and discuss our hopes and plans for a more aggressive approach to his migraines. When I say migraines I really mean migraine for it never goes away upon waking or sleeping. It is always with us like an old friend you really wish would never come to visit.
Our plan is to discuss possibly coming off (praise God) some of Clay's many medications. I mentioned in an earlier blog that he takes over 30 pills a day. He has many adverse side effects such as extreme sedation that are then fought with more drugs. It seems to be a vicious cycle that really isn't going anywhere. It makes more sense to us at this point to come off the drugs because his head is going to hurt regardless. I'd ask for prayers if he does come off of them because some of them will have side effects as his body goes through withdrawal. We also are gearing up more to visit the Diamond Headache Clinic. Clay's parents have done some wonderful research and praise the Lord we believe that insurance will cover it. Pray that I will be able to get off from work and so will his dad so we can go up for an evaluation soon. We know this will not be a magic cure and that there is still a long road ahead, but it does give us a glimpse of hope. I'll take all I can get at this point.
Please pray also that I can find someone to work for me this Sunday and Monday night so I can be awake and alert while Clay's mom is here and for the appointment on Tuesday. This night shift thing is really proving to be more of a bummer than I expected. Too many people go out at night, drive their cars, and get in wrecks...thus providing a job for me. STAY INSIDE AT NIGHT PEOPLE, YOUR WARM BEDS ARE MUCH MORE COMFY THAN THE TRAUMA UNIT!! :)
Many thanks to those of you who have sent me emails letting me know you have read my blog and are praying. It is encouraging to have your love and support. Here are the websites for the other people's blogs I have been reading. I warn you...they are sad, but the strength of these courageous saints might bring you hope in your own struggles.
www.cfhusband.blogspot.com
www.conorbootheandgirls.blotspot.com
www.prayforjoseph.blogspot.com
And now I will go lay down for a power nap because I have been awake since 0700 am and must go in to work tonight. Thank God for caffeine!
sarah
I found myself thinking of David today when he exclaimed "Why are you downcast O my soul?" because he knew he had the God of the universe on his side, yet he still struggled with feeling down and out. Good things are beginning to happen to us, but I think the weight of the struggle it has been for the past couple of years is starting to finally come crashing down on me. I am grateful beyond words that my loving mother in law will be coming in town this weekend for emotional and physical support. Clay has an appointment on tuesday the 22nd, and the three of us plus his dad via conference call will meet with his doctor and discuss our hopes and plans for a more aggressive approach to his migraines. When I say migraines I really mean migraine for it never goes away upon waking or sleeping. It is always with us like an old friend you really wish would never come to visit.
Our plan is to discuss possibly coming off (praise God) some of Clay's many medications. I mentioned in an earlier blog that he takes over 30 pills a day. He has many adverse side effects such as extreme sedation that are then fought with more drugs. It seems to be a vicious cycle that really isn't going anywhere. It makes more sense to us at this point to come off the drugs because his head is going to hurt regardless. I'd ask for prayers if he does come off of them because some of them will have side effects as his body goes through withdrawal. We also are gearing up more to visit the Diamond Headache Clinic. Clay's parents have done some wonderful research and praise the Lord we believe that insurance will cover it. Pray that I will be able to get off from work and so will his dad so we can go up for an evaluation soon. We know this will not be a magic cure and that there is still a long road ahead, but it does give us a glimpse of hope. I'll take all I can get at this point.
Please pray also that I can find someone to work for me this Sunday and Monday night so I can be awake and alert while Clay's mom is here and for the appointment on Tuesday. This night shift thing is really proving to be more of a bummer than I expected. Too many people go out at night, drive their cars, and get in wrecks...thus providing a job for me. STAY INSIDE AT NIGHT PEOPLE, YOUR WARM BEDS ARE MUCH MORE COMFY THAN THE TRAUMA UNIT!! :)
Many thanks to those of you who have sent me emails letting me know you have read my blog and are praying. It is encouraging to have your love and support. Here are the websites for the other people's blogs I have been reading. I warn you...they are sad, but the strength of these courageous saints might bring you hope in your own struggles.
www.cfhusband.blogspot.com
www.conorbootheandgirls.blotspot.com
www.prayforjoseph.blogspot.com
And now I will go lay down for a power nap because I have been awake since 0700 am and must go in to work tonight. Thank God for caffeine!
sarah
Monday, January 7, 2008
New Options
I feel that perhaps the Lord has given some more or new guidance, so I would plead for prayers to cover this next aspect of our medical journey. As a family, Clay and I with his parents have decided to start taking the steps in moving forward with pursuing more intensive therapies for his headaches. We are planning a trip at some point in the next month or two to travel to Chicago and meet with the doctors at the Diamond Headache Clinic. www.diamondheadache.com We plan to meet with Clay's neurologist here in Nashville on the 22nd of this month to talk more realistically about going to the clinic. Please pray for that meeting. We also are researching a migraine surgery best described at this website www.americanmigrainecenter.com. I confess that I am hopeful, yet nervous at the same time. What happens if we exhaust these two options and Clay still suffers relentlessly? I'm trying not to be ruled by the negative "what ifs" and focus on the "what is" in terms of what the gospel tells me. I'd ask that you pray for:
1 wisdom and discernment for the doctors we will visit
2 that we would see action from the Lord
3 for our fears to be comforted
4 clear direction as to whether or not we pursue the Clinic in Chicago or the surgery
5 that all our financial needs regarding these costly options would be met
Know that as I plead selfishly for your prayers for our family I am constantly thinking about and praying for many of you as well. I am learning how important it is to live and depend on community. We can live in so much darkness when we hide and try to pretend our lives are ok, fearful that others will think we are a burden if we confess our needs. There is so much freedom simply in confessing and letting the light of God's truth brighten a fearful or overwhelming situation! Thank you simply for a listening or "reading" ear because it lightens my load immensely.
We are off to see Clay's primary care physician to pursue a possible link between Patent Foramen Ovale and migraines. This could be an option to pursue further if Clay has a PFO. Pray for a miracle!
Love Sarah
1 wisdom and discernment for the doctors we will visit
2 that we would see action from the Lord
3 for our fears to be comforted
4 clear direction as to whether or not we pursue the Clinic in Chicago or the surgery
5 that all our financial needs regarding these costly options would be met
Know that as I plead selfishly for your prayers for our family I am constantly thinking about and praying for many of you as well. I am learning how important it is to live and depend on community. We can live in so much darkness when we hide and try to pretend our lives are ok, fearful that others will think we are a burden if we confess our needs. There is so much freedom simply in confessing and letting the light of God's truth brighten a fearful or overwhelming situation! Thank you simply for a listening or "reading" ear because it lightens my load immensely.
We are off to see Clay's primary care physician to pursue a possible link between Patent Foramen Ovale and migraines. This could be an option to pursue further if Clay has a PFO. Pray for a miracle!
Love Sarah
Wednesday, January 2, 2008
The Next Step
The Lord has brought me some days of much needed refreshing and renewal in Him. I feel that he has picked me up and given me a huge hug for the past couple of days. It has brought much joy and comfort to feel his presence and know I can trust in and rely on Him to be ever present. As we begin a New Year I am hopeful and thankful to be in such a place. We are so blessed to have such wonderful support on both sides of our families, and so blessed to have such an extended network of family in the Lord, who are caring for us and praying for us. I believe those prayers are what have given me a sense of calmness and peace this past week.
Whereas sometimes it is hard to received advice about what to do for Clay, or "have you tried this" (to which I usually respond with an emphatic yes), I would ask that you pray that the Lord would give us discernment as to what to do next. Or if you feel the Lord leads you in a certain direction, I am open to hear what He might have for us. Do we stay the course we are on, trusting that Clay's migraines will eventually be controlled as our Neurologist tells us? Do we need to try something different? I admit if we need to do something different, I have no idea what it could be. We have tossed the idea of going to headache clinics around, but they are expensive and our Neurologist says that we could go, spend the money, and then be right back in the same spot as before. Clay has been in NC for the past couple of days and noticed when he was home in our condo for a day that his head seemed worse. Should we move?!
Please continue to pray for patient endurance for us both. I trust that the Lord who knows our cares will not be silent in this matter.
Sarah
Whereas sometimes it is hard to received advice about what to do for Clay, or "have you tried this" (to which I usually respond with an emphatic yes), I would ask that you pray that the Lord would give us discernment as to what to do next. Or if you feel the Lord leads you in a certain direction, I am open to hear what He might have for us. Do we stay the course we are on, trusting that Clay's migraines will eventually be controlled as our Neurologist tells us? Do we need to try something different? I admit if we need to do something different, I have no idea what it could be. We have tossed the idea of going to headache clinics around, but they are expensive and our Neurologist says that we could go, spend the money, and then be right back in the same spot as before. Clay has been in NC for the past couple of days and noticed when he was home in our condo for a day that his head seemed worse. Should we move?!
Please continue to pray for patient endurance for us both. I trust that the Lord who knows our cares will not be silent in this matter.
Sarah
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