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!

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

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.

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

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

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

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

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