Today was my appt with my opthalmologist appt. She said I have some swelling on my optic nerves. She wants to get me in to my neuosurgeon before Feb 12th. So, they went ahead and did a visual field and they are trying to get me in for a spinal tap early next week. She said we might as well get it all done while we are waiting to get in the the surgeon, because he would just want to get it all done anyway. So we might as well get them done now so that we won't have to wait after going to the surgeon's. So, I am tired and discouraged a bit today. Just feeling kind of out of it and numb. I am trying to be positive and keep a smile on my face, but right now it is time to let myself be discouraged and get back to life tomorrow.
Meds are kicking in and I am feeling kind of out of it. Please pray for my husband, Dan, and my boys, Noah and Samuel. This is always so hard on them.
Friday, January 29, 2010
Thursday, January 28, 2010
I must look up!!!
Sometimes I just want to find a deserted island and run away to it. Today was just on of those days that would've been great. I try so hard to be upbeat and cheerful, but today has really put me to the test. I have had a horrendous headache for a few weeks now. I have really tried to take care of myself, take my meds, and not do too much. However, nothing has helped. The scar on my chest is swollen and red and very tender to the touch. The tubing in my abdomen has become really painful. I have been on the diamox, but it causes kidney and bladder pain and infection. I try to take it as much as I can tolerate it. But there are some days when my body just needs a break from the horrible side effects of it. The neuro had me on wellbutrin to see if that would help with the headaches, and also a side effect would be to help me with my moods. We have seen no change with it, so I am weaning off of it. She put me on steroids to see if they will help with the headache. I have to take them for 9 days, and give her a call on the 9th day to let her know how I am doing. I am also no taking the imitrex anymore because we weren't seeing any difference when I had been taking it here in the last few weeks. I am still on the Neurotin(anti-seizure), tizanadine(muscle relaxer), trazedone(for sleep), and phenergan(anti-nausea). I am supposed to keep track of how many times that I vomit and we may add compazine to the mix. She did some labs today to check electrolytes, liver function, and to see if my white cell count is elevated. With the fevers, she is concerned that there is an infection somewhere. She is also concerned with the forgetfulness, dropping things, losing my words, mixing my words up(ie-instead of saying where's noah, I say woah neres. Sounds funny, but it really isn't). I try to laugh it off and say how silly that is, but inside it is really scary. I also am pretty good at spelling, but here lately, I can't even spell some of the easiest words, which is very frustrating to me. When I type and also when I write, I mix the letters up or they just don't come to me at all. I have actually misspelled my name a number of times in the last few weeks. We are praying that all of this stuff is just related to my headaches, but the neuro isn't completely sure. Some days, it is worse than others.
I have my visual field testing on Friday. And I also will have my optic nerves checked. I am trying to get into my neurosurgeon ASAP to see if the shunt is working or if it is even holding a setting. I hope that the setting has just not held and it just needs reset. But I also know that when he set it after the MRI, he said that sometimes the MRI will cause the shunt to malfunction. So, for now, it is a wait and see. Which we are used to.
Dan's knee was a little better, and now it is worse again. He has been going to physicalt therapy, doing all the things she asks him to do, and she thinks that something is definitely torn. She wantss him to get an MRI and see what is going on. He is in so much pain right now. He took a half day off today, so he could take me to the dr, and I think he was glad that he wasn't at work. Once we got home, he slept for the whole evening. He was hurting really bad and nothing seems to help. We have tried ice, heat, rubs, eucalyptus oil, hot baths, elevating it, and nothing relieves the pain. He is worried about me and with the knee pain, it is a bit much for him.
I don't understand why everytime that Dan and I try and do something at church, I get my headaches back, or get sick somehow. I hate it!!!!! I am trying to get everything done for the program that we are starting on Sunday nights, and it is going so slow right now. I am afraid that I am not going to be able to do it. I am trying to just give it all to God, but it is hard. I am so used to being active in church and I haven't been able to do very much the last few years, with the headache and surgeries. Now, I am so excited about this program, but I am so afraid of not being able to do it. I just don't understand. I know God could take this all away right now, but he doesn't and I don't understand. Today is one of those days that I wonder why someone that wants to work in ministry has such a difficult time, but then there are others that could and don't. Why can't they have this? I shouldn't even think those things, because I am so blessed. I have been so guilty today of not trusting and having faith. My faith seems so weak right now...I feel weak. Today is just one of those days filled with guilt, lonliness, self-pity, and just completly out of sorts. I wish I could sleep it all away, but I can't. I need to just pick myself up and go on with what life has for me. The verse we voted as our team verse for volleyball, my senior year, has been on my mind a lot lately. It is Colossians 1:29 "Whereunto I also labour, striving according to his working, which worketh in me mightily." We had a lot of great devotions surrounding this verse that year. I think it was the year we all took our team verse to heart and lived it. We went to state and won, went to regionals and won, and then went to nationals and came in 3rd. Not bad for a team from a school that had about 80-90 kids from K-12 grade. I had a ball that year, but it was one of the hardest years I had had up until then. You see, I had a terrible back injury. My vertebrae in my lower back had turned almost 360*. Had it turned anymore, I could've and most likely would've been paralyzed from the waist down. I had a great chiro that took me in and started therapy twice a day. He was able to get me thru reg season, state, and regionals. I think he about had a heart attack when I told him that we were going on to nationals. He gave strict instructions to me and my coach. I was allowed to go. During the first few hours at national, we were practicing and I went down. I had numbness in both legs. As I sat on the floor, I remember thining of that verse. A ref came over to me after I was sitting on the bench and began to talk to me. He was asking what was wrong with me and then he ask me to tell him what the verse reference was that was on my warm-up. I quoted it to him and then he asked me if I knew what it meant. I told him "no matter if I play or not, if we win or not, we have Christ that is working in us and in us mightily! We will never be losers if we allow that working to take place." I will never forget what he told me. He said "there are a lot of kids that I see wearing verse references on their clothes etc, but most of the time they couldn't open a Bible and find the verse, let alone share it completely memorized, and be able to explain what it mean to them." I have been really down over the whole memory loss issue, I used to be able to memorize chapters of the Bible, now I am lucky to remember a few verses. But one thing I do know, when the time comes that I need a verse, I may not remember it word for word, but God allows me to remember what I need at that time.
This disease has take a lot from me, it has give me a lot as well, but I have a God that is bigger than this disease. He may not take it from me, but he will get me thru it. He may not take me out of the valley, but he will give me glimpses of the mountaintop. He may not take me out of the shadows, but he will remind me that to have shadows, you need some light to make them. He may allow the suffering, but I know that one day there will be no more suffering. I may have rain in my life, but there is always the glimpse of a rainbow to get me thru. These are the things I must concentrate on...the good things that God gives us each day. Today it was windy, but boy was that sunshine wonderful! I must look up if I want to see any mountaintops. I must look up if I am to seek God in my pain. I must look up!
I have my visual field testing on Friday. And I also will have my optic nerves checked. I am trying to get into my neurosurgeon ASAP to see if the shunt is working or if it is even holding a setting. I hope that the setting has just not held and it just needs reset. But I also know that when he set it after the MRI, he said that sometimes the MRI will cause the shunt to malfunction. So, for now, it is a wait and see. Which we are used to.
Dan's knee was a little better, and now it is worse again. He has been going to physicalt therapy, doing all the things she asks him to do, and she thinks that something is definitely torn. She wantss him to get an MRI and see what is going on. He is in so much pain right now. He took a half day off today, so he could take me to the dr, and I think he was glad that he wasn't at work. Once we got home, he slept for the whole evening. He was hurting really bad and nothing seems to help. We have tried ice, heat, rubs, eucalyptus oil, hot baths, elevating it, and nothing relieves the pain. He is worried about me and with the knee pain, it is a bit much for him.
I don't understand why everytime that Dan and I try and do something at church, I get my headaches back, or get sick somehow. I hate it!!!!! I am trying to get everything done for the program that we are starting on Sunday nights, and it is going so slow right now. I am afraid that I am not going to be able to do it. I am trying to just give it all to God, but it is hard. I am so used to being active in church and I haven't been able to do very much the last few years, with the headache and surgeries. Now, I am so excited about this program, but I am so afraid of not being able to do it. I just don't understand. I know God could take this all away right now, but he doesn't and I don't understand. Today is one of those days that I wonder why someone that wants to work in ministry has such a difficult time, but then there are others that could and don't. Why can't they have this? I shouldn't even think those things, because I am so blessed. I have been so guilty today of not trusting and having faith. My faith seems so weak right now...I feel weak. Today is just one of those days filled with guilt, lonliness, self-pity, and just completly out of sorts. I wish I could sleep it all away, but I can't. I need to just pick myself up and go on with what life has for me. The verse we voted as our team verse for volleyball, my senior year, has been on my mind a lot lately. It is Colossians 1:29 "Whereunto I also labour, striving according to his working, which worketh in me mightily." We had a lot of great devotions surrounding this verse that year. I think it was the year we all took our team verse to heart and lived it. We went to state and won, went to regionals and won, and then went to nationals and came in 3rd. Not bad for a team from a school that had about 80-90 kids from K-12 grade. I had a ball that year, but it was one of the hardest years I had had up until then. You see, I had a terrible back injury. My vertebrae in my lower back had turned almost 360*. Had it turned anymore, I could've and most likely would've been paralyzed from the waist down. I had a great chiro that took me in and started therapy twice a day. He was able to get me thru reg season, state, and regionals. I think he about had a heart attack when I told him that we were going on to nationals. He gave strict instructions to me and my coach. I was allowed to go. During the first few hours at national, we were practicing and I went down. I had numbness in both legs. As I sat on the floor, I remember thining of that verse. A ref came over to me after I was sitting on the bench and began to talk to me. He was asking what was wrong with me and then he ask me to tell him what the verse reference was that was on my warm-up. I quoted it to him and then he asked me if I knew what it meant. I told him "no matter if I play or not, if we win or not, we have Christ that is working in us and in us mightily! We will never be losers if we allow that working to take place." I will never forget what he told me. He said "there are a lot of kids that I see wearing verse references on their clothes etc, but most of the time they couldn't open a Bible and find the verse, let alone share it completely memorized, and be able to explain what it mean to them." I have been really down over the whole memory loss issue, I used to be able to memorize chapters of the Bible, now I am lucky to remember a few verses. But one thing I do know, when the time comes that I need a verse, I may not remember it word for word, but God allows me to remember what I need at that time.
This disease has take a lot from me, it has give me a lot as well, but I have a God that is bigger than this disease. He may not take it from me, but he will get me thru it. He may not take me out of the valley, but he will give me glimpses of the mountaintop. He may not take me out of the shadows, but he will remind me that to have shadows, you need some light to make them. He may allow the suffering, but I know that one day there will be no more suffering. I may have rain in my life, but there is always the glimpse of a rainbow to get me thru. These are the things I must concentrate on...the good things that God gives us each day. Today it was windy, but boy was that sunshine wonderful! I must look up if I want to see any mountaintops. I must look up if I am to seek God in my pain. I must look up!
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