This past week we posted an updated on Face Book that God is doing some BIG things in the Milner house. We have been eager to share what God is doing but knew that we needed to clarify some things before hand. We have also been really busy with doctor's appointments and getting the kids ready for school. We were so in awe of what he was doing that we needed to praise him in the moment and let those praying know that God hears our cries.
Monday morning I had my first appointment at the Nuclear Medicine Clinic. When James and I arrived the radiology tech asked me how the liquid diet was going. This caught us off guard because no one had informed us that I needed to be on one. They had not contacted us to inform us that there were several things I was supposed to do to prepare for the test. Since I had not eaten since Sunday night he decided to do the injection so we could start the test. It was very disheartening to see him take the syringe out of the "thermos" that was marked hazardous. This is not something you grow up thinking you will ever have to experience. Don't get me wrong, this is nothing compared to what many go through but each phase of testing brings more emotions and more questions. You find yourself questioning the side effects of treatments and testing and wondering if all this is really necessary.
After they administered the Octrotide and tracer I was able to leave. Within 10 to 15 minuets I had a terrible headache. Thankfully it was gone by Tuesday morning. Monday afternoon I had to return to the clinic for the first set of scans. This set only lasted about 30 mins. I am not a fan of enclosed spaces and to top it off they strap your arms down so they can't get in the way of the scans. As they started the machine I felt a cold burning sensation, almost like your skin is in direct contact with ice. Not sure what caused that but the sensations moved down the body as the machine moved. At least the scans went a lot faster than I thought they would and we were blessed to have the tech that we had. He is a Christian and was very encouraging to us throughout the process. Each morning when I came in he had a new CD playing praise and worship music. He was really upset that they had not prepared me for the test and said that we should talk to our doctor about the fact that she had not given us the required directions for the procedure. We really did not want to have that fight. We have already had several discussions with her and her office for dropping the ball on other things. When I came back Tuesday morning the tech told me that he sent an email to the head of scheduling and to my doctor's office filling a formal complaint. He said these test are super expensive and not something to play around with.
After we finished the scans on Monday I was in a terrible mood. I admit that I am not good with change. We were caught off guard when the tech told us that they had prescribed medication that I was suppose to take 24 hours before the test and that I needed to be on a liquid diet as well. Since no one prepped us for this I would most likely have to do an additional day of scans. Our tech was really upset that they had not prepared me and said
that we needed to talk to our doctor since it was her place to inform us. We really did not want to
have that fight. We have already had several discussions with her and
her office for dropping the ball on other things. When I came back
Tuesday morning the tech told me that he sent an email to the head of
scheduling and to my doctor's office filling a formal complaint. He said
these test are super expensive and not something to play around with.
Monday I was also dealing with the headache and I was having terrible stomach pain. I thought it was because I had not eaten. I found out the next day it was a side effect from the radiation. I hate to admit it but by early evening I was in a terrible mood and just wanted to be left alone. I appreciate everyone that called to check on things but I was just not up to talking. I was really struggling with why this? Not why me but why this? What is the purpose in all these procedures? My body is so tired and every time I go through another procedure we see new side effects or I have a relapse. I am sharing all of this because that evening I had made the decision that when the scans were over if they came back clear then I was done with all the testing. My greatest fear was not that they would find cancer but that after all this we would still have no answers. These past 18 months have taken a toll on our family physically, emotionally and financially. At what point do you say enough. If these test came back normal then I was done fighting for answers. No more doctors and no more test. I begged God to release me from this nightmare and told him that I would be content with the progress we have made. I could live without knowing what was wrong.
Tuesday morning I returned for the second round of scans. James had to go back to work so I went to my appointment alone. I was feeling better physically but emotionally I was still in a funk. As I was taking a shower that morning I received a text from a friend saying that she would meet me at my appointment. I was so relieved to know that I did not have to be there alone. The second day was the longest day and involved several different scans. After the scans were finished I waited for the radiologist to review them and determine if I would have to return for a third round. My prayer was that I would not need to return. Unfortunately the radiologist ordered another day of scans. This meant another morning away from the kids and another day on a liquid diet.
Tuesday morning while I was at my appointment James received a phone call from our insurance company. The lady that called him said she was a nurse case manager and that she had been assigned to contact our family regarding my referral to the MAYO clinic. After talking with her for a short time and explaining that I was in the midst of testing he told her that she could leave me a voice mail and that I would get back with her. She did leave a voice mail and was very kind. She said that she was thinking of me and that she hoped that the scans would reveal some answers. She told me to call her at my convenience and that she had really good news for me about my referral to MAYO.
Wednesday I finished my scans and was released. I was finally able to take my "all you can eat" jello wrist band off. Monday Noah asked me what my wrist band was for and that is what I told him. On my way home from the clinic I returned the phone call to my case mgr. She began by asking me how I was doing and how my scans went. She was very sweet and very caring. She told me that she was sorry that we had been through so much and that she wanted to help us. She explained that when my neurologist faxed the request for me to be seen at the MAYO Clinic they began reviewing all my medical records. As they reviewed my medical history, all the testing that had been done and all the abnormal results it came to their attention that we had a lot going on. They made a recommendation that we be assigned a nurse case mgr. She explained that this was a free service to our family and that we were not required to accept it. She asked if this was something that would benefit our family? She informed us that she had the authority to make decisions for our case and that her responsibility is to know my medical history and to be an advocate for us. We talked for over an hour. At first she just listened to what I had to say about my medical history. Then she asked me questions about my daily needs. She wanted to know if I was able to cook, clean, drive etc. I explained that we have seen a lot of progress but that there was a time when these things were a challenge. I was able to share how meals were provided and how people helped with the kids. I shared that we had a close family and a strong support group. At one point she said "you have an amazing testimony!" I paused after she said that because I had not realized that the whole time I was talking, I was sharing my faith with a total stranger. In sharing my story I was sharing my testimony. What a comfort knowing that they go hand in hand and can not be separated. As we continued to talk, God continued to confirm that this was a divine assignment.
When nurse K talked to James on Tuesday she confirmed that insurance approved our request to be seen at the MAYO clinic in Rochester, MA. Insurance will cover my appointments at in network cost. We will still have to have all Genetics and advanced testing pre-approved but now we have some one that will make sure these are going quickly. I am no longer a claim waiting to be processed but a person. I have been approved for August 10, 2012 through August 10, 2013 and they can extend this time if needed.
This is a huge answer to our prayers but there are still some concerns about going to the clinic. I began to explain to "K" that if they did not think I was sick when I went to Little Rock why would a place like MAYO think I am sick. I have made huge strides since my Little Rock appointment so what if this is another waste of time and money? She told me "He opened this door for a reason." I believe that God spoke through her knowing how much I have struggled with going to MAYO. All of my doctors agree that this is where I need to be but for me it continues to be a struggle. It is very difficult to be told over and over that there are no answers and that it may be physiological.
Still uneasy about moving forward I explained to her that MAYO has had my referral since March and we have not heard from them. I asked if that meant they might not take my case. She asked me if I had a phone number to contact the MAYO clinic. I told her I had the number but wanted to wait till insurance confirmed our coverage before we called. She told me if I can get her the number then she would call and see if she could get things moving. She would call me back after she talked to them. Again I was blown away. God was literally taking burdens off my shoulders and
giving them to someone else to carry.
A few hours later I received a call from "K" and she said that they would not allow her to schedule my appointment but that she had confirmed with MAYO that insurance would be paying in network and she had been given a direct number for me to call. I called the number that she gave me and was given my official MAYO ID number. I was then transferred to the Neurology clinic to make my appointment. I was informed that they did receive my referral and that I was still on the waiting list for scheduling. Rochester has the largest neurology dept of all the MAYO clinics and it is the hardest to get into. She told me that I could call and ask to be scheduled into a cancellation spot but that it could be several months before I am contacted for an appointment. After she told me that she kind of hesitated and then said "give me just a minuet." When she came back she said that since it was late in the day she checked for cancellations. She was able to schedule my appointment for November 12th. Because of the mix up in Little Rock I wanted to make sure that I was being scheduled to see a neurologist. She said that the doctor she was able to schedule me with is the leading neurologist in his field. He is the most requested and the hardest to get an appointment with.
Late Wednesday night we received an email from my endocrinologist that my scans were clear and that there are no signs of Carcinoid cancer cells. This is a huge praise but comes with many mixed emotions. We are relieved by the results but it is difficult to process why he chose for us to go down another road with no answers. I do not know the mind of God but I do know His character and I do believe in His promises. Our battles are not physical but spiritual. We do not know what will bring Him the most glory. What seems like a waste of time and resources to us might mean eternity for someone else.
What else can be said but "praise God from who all blessing flow!"
Saturday, August 18, 2012
Thursday, June 7, 2012
Sorry it has taken us so long to post an update. I wish I could just dictate the update and it would appear. The past several weeks have been difficult physically which leads to things being difficult emotionally. I was able to take a much needed break from testing after the first of the year but we have found our selves back in full swing again.
February I ended up with a bad case of bronchitis that my body had a hard time fighting off. We are going on two years of my immune system being compromised. I get sick easily and then have a very difficult time fighting it. When my immune system is down then all the other things are magnified. I try to be carefull, I even had to stop helping in Noah's class and eating lunch with him at school. The times I gave in I was sick within 24 to 48 hours. I have made sure that I am there for the big stuff but I hated missing so much of his Kindergarten year.
Since last August we have seen progress then setbacks followed by more progress and then more setbacks. We still believe that things are better than they were a year ago but we are starting to see a lot of things regress.
It has been difficult to see so many symptoms return. The tremors are back but thankfully they seem to happen right after I wake up or they end up waking me up. The doctors keep asking me if I'm positive that they are tremors and not seizures? I am fully aware of what is happening and I can communicate during them so I am fairly positive they are not seizures. I am having trouble with my long term memory as well as short term memory now. Some days are worse than others. My balance and coordination are both pretty bad. It takes a lot out of me physically to control my body when walking. My legs and arms are weak again so I get tired easily. Some weeks the fatigue is better but at times it is debilitating. It takes me a while to get things done because I can only go a couple of hours before I need to rest. Some days I can push it other days it's all I can do to make my body physically move when it hits. Then there is the nerve pain. I told the neurologist that some days I feel like I need a root canal done in my toes and legs. He said that was actually a very accurate description of neuropathic pain.
A couple of months ago we did a repeat of labs to see how things were progressing. A few weeks later we met with one of my doctors to discuss the results. It was a productive visit as we ended up changing some meds around that so far have not made me sick. YEA! We are praying that these will work better and cause less side effects. We also determined that my B12 levels were low again and that I needed to go back to weekly injections instead of the monthly schedule we had just moved to. My vitamin D levels have gone from too low to being too high. She adjusted my dose and we will keep track of that now. This doctor is really good about trying to get levels to be optimal instead of just with in range.
The next day I met with my neurologist for further nerve testing. This time he was testing the legs and feet since we have already done the hands and arms. This time he also did an EMG for muscle function. That was dreadful and hopefully I won't have to repeat those any time soon.
At the end of the appointment he reviewed my results and went over previous testing that we have done. We knew that they had found several brain lesions but he had never shared that the MRI had shown upwards of 20 lesions. I have abnormal nerve conduction test as well as abnormal muscle response. I also have an elevated CRP that continues to come back higher each time we test. It is considered very high at 10 and my last one was almost 19. My neurologist is stumped because just when we think we have it narrowed down something new throws us off.
We are now in the process of a referral to the MAYO clinic in Rochester MN. I was very overwhelmed when he told us this was our next step and our best option for finding answers. I am still overwhelmed because of the cost and having to jump through all the hoops to get there. I have to fight through my selfish ways of wanting to be in control and remember that God has a plan and that it is perfect for me even when I do not like it. That he has a reason and a purpose that is greater than my own agenda.
We still have to wait to see if MAYO will accept my case and we are having to wait for insurance to approve an out of network facility. Our prayer is that God will open doors that we need opened and that he will close doors that we are not meant to go through. That he will give us peace about the overwhelming medical bills as well as peace surrounding the unknown. We pray that he will work out all the details and that we will be submissive to his will.
February I ended up with a bad case of bronchitis that my body had a hard time fighting off. We are going on two years of my immune system being compromised. I get sick easily and then have a very difficult time fighting it. When my immune system is down then all the other things are magnified. I try to be carefull, I even had to stop helping in Noah's class and eating lunch with him at school. The times I gave in I was sick within 24 to 48 hours. I have made sure that I am there for the big stuff but I hated missing so much of his Kindergarten year.
Since last August we have seen progress then setbacks followed by more progress and then more setbacks. We still believe that things are better than they were a year ago but we are starting to see a lot of things regress.
It has been difficult to see so many symptoms return. The tremors are back but thankfully they seem to happen right after I wake up or they end up waking me up. The doctors keep asking me if I'm positive that they are tremors and not seizures? I am fully aware of what is happening and I can communicate during them so I am fairly positive they are not seizures. I am having trouble with my long term memory as well as short term memory now. Some days are worse than others. My balance and coordination are both pretty bad. It takes a lot out of me physically to control my body when walking. My legs and arms are weak again so I get tired easily. Some weeks the fatigue is better but at times it is debilitating. It takes me a while to get things done because I can only go a couple of hours before I need to rest. Some days I can push it other days it's all I can do to make my body physically move when it hits. Then there is the nerve pain. I told the neurologist that some days I feel like I need a root canal done in my toes and legs. He said that was actually a very accurate description of neuropathic pain.
A couple of months ago we did a repeat of labs to see how things were progressing. A few weeks later we met with one of my doctors to discuss the results. It was a productive visit as we ended up changing some meds around that so far have not made me sick. YEA! We are praying that these will work better and cause less side effects. We also determined that my B12 levels were low again and that I needed to go back to weekly injections instead of the monthly schedule we had just moved to. My vitamin D levels have gone from too low to being too high. She adjusted my dose and we will keep track of that now. This doctor is really good about trying to get levels to be optimal instead of just with in range.
The next day I met with my neurologist for further nerve testing. This time he was testing the legs and feet since we have already done the hands and arms. This time he also did an EMG for muscle function. That was dreadful and hopefully I won't have to repeat those any time soon.
At the end of the appointment he reviewed my results and went over previous testing that we have done. We knew that they had found several brain lesions but he had never shared that the MRI had shown upwards of 20 lesions. I have abnormal nerve conduction test as well as abnormal muscle response. I also have an elevated CRP that continues to come back higher each time we test. It is considered very high at 10 and my last one was almost 19. My neurologist is stumped because just when we think we have it narrowed down something new throws us off.
We are now in the process of a referral to the MAYO clinic in Rochester MN. I was very overwhelmed when he told us this was our next step and our best option for finding answers. I am still overwhelmed because of the cost and having to jump through all the hoops to get there. I have to fight through my selfish ways of wanting to be in control and remember that God has a plan and that it is perfect for me even when I do not like it. That he has a reason and a purpose that is greater than my own agenda.
We still have to wait to see if MAYO will accept my case and we are having to wait for insurance to approve an out of network facility. Our prayer is that God will open doors that we need opened and that he will close doors that we are not meant to go through. That he will give us peace about the overwhelming medical bills as well as peace surrounding the unknown. We pray that he will work out all the details and that we will be submissive to his will.
Thursday, March 15, 2012
Scratch and Dent
Our family loves scratch and dent items. We are all about finding an item that we need at a reduced price because somewhere it has a flaw. Our motto is never pay full price. Sometimes we get an item that is "flawless" but it was on sale and as often as possible we have a coupon to go with it. I would say that 90% of the time we look for scratch and dent items to save money but sometimes we look for those items because we know that they will be used in a way that will result in some form of damage. For example, we have 3 doors that open toward our fridge/freezer in our kitchen. When it was time to replace that appliance we knew that it would sustain many bumps from all the doors being swung in it's direction. It was the perfect place for a scratch and dent. When we have people over and they swing the door too hard and hit the fridge they always apologize profusely. If our fridge was "perfect" and we had paid full price for it, I know myself well enough to say that I would cringe every time that happened. Instead I can just reply "it's not big deal".
I have several reasons for starting this post the way I did. First I have to admit that this has been something I have had to learn. I love to save money and for me half the fun is finding a good deal. With that said I struggle with things not being "perfect". My happy place includes the pages out of Better Homes and Gardens. I love when everything is picture perfect. I love crisp details, vibrant colors, and yes to me everything should have it's own place. If you have known me long enough you know that if your children receive a gift from me it will include it's own storage container. Yes I am a little OCD. I do not like chaos and I do not like messes. Don't get me wrong there is a time and place for messy but I only enjoy it in a controlled environment. That means that you make a mess, have fun and then clean it up. I love fresh cut lawns, clean streets, flowers blooming...I think you get my point. I can not wait till we see heaven in all it's glory, everything just as it should be. Heaven will defiantly be my ultimate happy place.
Now that I have tattled on myself and told you just how perfect I think life should be it's time to face reality. Life is messy. My life is messy. No matter how hard I try I can not be perfect. My husband uses the good towels (we actually don't have those anymore; maybe I have learned a little). The throw pillows are never put back on the bed unless we have company. I always have clean laundry on the couches...unless we have company; then it's on the bed in our room. Our paper piles are always overtaking my counter or kitchen table. I have a teenager and I just don't have the fight in me to make her keep her room the way I like it. Our boy is all boy. He is actually a lot like his mom and is my only other neat freak in the house. God bless him.
In reality I am just not able to keep things perfect the way I wish I could. Perfect means that life is not happening that memories are not being made and that lives are not interacting. Perfect means that we would not need each other, that we would not need a savior. So why is "perfect" so tempting. Why do I spend my time striving to attain something I will never attain this side of heaven?
I really felt like I needed to share my struggle with perfection so that I could share what God is teaching me through this journey of chronic illness.
The Lord is near to the brokenhearted and saves the crushed in spirit. Psalms 34:18. A week ago I was asking God why are you crushing my spirit? I understand the need for trials but my spirit is crushed. What good is coming from this. Over the next several days God would reveal that he was not crushing my spirit but that I was broken hearted and that I was guarding my heart from everything including him. His intentions are to be near to me but sometimes we become so crushed by our enemy that we run from everything including the arms of the one who can comfort us.
I do not account my life of any value nor as precious to myself, if only I may finish my course and the ministry that I received from the Lord Jesus, to testify to the gospel of the grace of God. Acts 20:24. One of the hardest things I have dealt with during this season of illness is not feeling like God can use me. God gave James and I a heart for couples and families when we were at John Brown. We experienced a difficult transition when we left Colorado and moved to Arkansas so that James could attend college. We ended up having a wreck that cost us our only vehicle and caused injuries that would make it difficult for me to work. I would be the only source of income at that time. When we arrived at JBU the campus was pretty vacant so we ended up unloading our Ryder truck by ourselves. We then had to return the truck that had been damaged in the wreck to Tulsa. We started our new life 16 hours away from home with no money, injured, no vehicle and we had to use his first student loan check to pay for the damage to the Ryder truck. It was at the time that God showed us how difficult it feels to be alone. We vowed to him that we would do everything possible for others to not feel the way we did. Over the next 5 years we would meet every truck that pulled into married student housing with as many people as we could round up and several boxes of pizza. No one would go to sleep that night with out beds set up and the washer and dryer hooked up. This ministry would eventually lead us to where we are today and where we have been for almost 10 years. We would learn that we could endure anything if we just focused on the needs of others. If we took care of them then God would take care of us.
We learned that serving people means getting your hands and feet dirty, it is taking action and investing in them. For 19 years this is what has driven us, it is our passion to help others and that they would not feel alone. When I became sick almost 18 months ago we thought it would be short lived. We fought through the initial bad days and thanked God for the good ones. Eventually the bad days out weighed the good days and the good days were hard to spot. Something that we thought would be a sprint has turned out to be a marathon. We started loosing the ability to keep up with everything and by the time we realized that something was serious we were buried in this chronic illness, doctors appointments, physical pain, memory loss, financial hardship and for me depression. By this time I can barley keep up with taking care of myself let alone my family and then those God called us to minister to. I felt like so much had been taken away and now I can't even see a purpose in this because we are not effective in ministry. How are we going to take care of others? How am I supposed to share the Gospel when I can't remember why I grounded my teenager. I spent almost a year not being able to read because of the pain in my eyes and head and because of the blurred vision. What I did read I did not retain and again my short term memory kept me from remembering new names and faces. I was more and more aware of my brokenness as days went by. As we found some answers and we started treatment I began to gain some of my confidence back but that would soon dwindle again. Eventually I found myself not only broken but crushed as well.
I started 2 new studies at the church this semester. One study has been too overwhelming and too difficult to keep up with. I still have a difficult time retaining information. The other study was not as "deep" as my Beth Moore study and we easier for me to keep up with. We are one week from finishing the study and God has used it encourage me, teach me and equip me for the next step of ministry. I still do not know what that looks like but he has given me a glimpse through the ladies in this study. He is teaching me that instead of hiding my broken vessel until I can get it all patched up I need to let it be seen by others. This is not easy. It means being vulnerable and humble. It means showing those around me that I am more than scratch and dent that I am duck tape and super glue. He is teaching me to bravely share things that I would rather keep to myself. To allow others to pray for me and to encourage me. I would rather be the encourager but I am learning that sometimes God asks us to learn the things we are not good at. If I am good at encouraging others but not at receiving and others are good at receiving and not encouraging then we need each other. We need to offer a safe place for each other to learn. That is what God has given me through this study. He has given me a safe place to learn how to let others encourage me while at the same time giving them opportunities to learn how to respond to those needs. Either way we need each other so that we can become more like HIM. I know that there is still so much more for me to learn. I never thought that I had arrived before this I just didn't understand how God could use me in this state of brokenness.
My heart is still chasing after him. I just run a little slower than I use to. He knows the frailty of my body but he also knows the condition of my heart. My prayer is that I will find a way to focus on my heart and let God focus on the rest. If my mind is not clear but my heart does not waiver then I know that my God will not lead me astray.
Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Proverbs 3:5-6
I have several reasons for starting this post the way I did. First I have to admit that this has been something I have had to learn. I love to save money and for me half the fun is finding a good deal. With that said I struggle with things not being "perfect". My happy place includes the pages out of Better Homes and Gardens. I love when everything is picture perfect. I love crisp details, vibrant colors, and yes to me everything should have it's own place. If you have known me long enough you know that if your children receive a gift from me it will include it's own storage container. Yes I am a little OCD. I do not like chaos and I do not like messes. Don't get me wrong there is a time and place for messy but I only enjoy it in a controlled environment. That means that you make a mess, have fun and then clean it up. I love fresh cut lawns, clean streets, flowers blooming...I think you get my point. I can not wait till we see heaven in all it's glory, everything just as it should be. Heaven will defiantly be my ultimate happy place.
Now that I have tattled on myself and told you just how perfect I think life should be it's time to face reality. Life is messy. My life is messy. No matter how hard I try I can not be perfect. My husband uses the good towels (we actually don't have those anymore; maybe I have learned a little). The throw pillows are never put back on the bed unless we have company. I always have clean laundry on the couches...unless we have company; then it's on the bed in our room. Our paper piles are always overtaking my counter or kitchen table. I have a teenager and I just don't have the fight in me to make her keep her room the way I like it. Our boy is all boy. He is actually a lot like his mom and is my only other neat freak in the house. God bless him.
In reality I am just not able to keep things perfect the way I wish I could. Perfect means that life is not happening that memories are not being made and that lives are not interacting. Perfect means that we would not need each other, that we would not need a savior. So why is "perfect" so tempting. Why do I spend my time striving to attain something I will never attain this side of heaven?
I really felt like I needed to share my struggle with perfection so that I could share what God is teaching me through this journey of chronic illness.
The Lord is near to the brokenhearted and saves the crushed in spirit. Psalms 34:18. A week ago I was asking God why are you crushing my spirit? I understand the need for trials but my spirit is crushed. What good is coming from this. Over the next several days God would reveal that he was not crushing my spirit but that I was broken hearted and that I was guarding my heart from everything including him. His intentions are to be near to me but sometimes we become so crushed by our enemy that we run from everything including the arms of the one who can comfort us.
I do not account my life of any value nor as precious to myself, if only I may finish my course and the ministry that I received from the Lord Jesus, to testify to the gospel of the grace of God. Acts 20:24. One of the hardest things I have dealt with during this season of illness is not feeling like God can use me. God gave James and I a heart for couples and families when we were at John Brown. We experienced a difficult transition when we left Colorado and moved to Arkansas so that James could attend college. We ended up having a wreck that cost us our only vehicle and caused injuries that would make it difficult for me to work. I would be the only source of income at that time. When we arrived at JBU the campus was pretty vacant so we ended up unloading our Ryder truck by ourselves. We then had to return the truck that had been damaged in the wreck to Tulsa. We started our new life 16 hours away from home with no money, injured, no vehicle and we had to use his first student loan check to pay for the damage to the Ryder truck. It was at the time that God showed us how difficult it feels to be alone. We vowed to him that we would do everything possible for others to not feel the way we did. Over the next 5 years we would meet every truck that pulled into married student housing with as many people as we could round up and several boxes of pizza. No one would go to sleep that night with out beds set up and the washer and dryer hooked up. This ministry would eventually lead us to where we are today and where we have been for almost 10 years. We would learn that we could endure anything if we just focused on the needs of others. If we took care of them then God would take care of us.
We learned that serving people means getting your hands and feet dirty, it is taking action and investing in them. For 19 years this is what has driven us, it is our passion to help others and that they would not feel alone. When I became sick almost 18 months ago we thought it would be short lived. We fought through the initial bad days and thanked God for the good ones. Eventually the bad days out weighed the good days and the good days were hard to spot. Something that we thought would be a sprint has turned out to be a marathon. We started loosing the ability to keep up with everything and by the time we realized that something was serious we were buried in this chronic illness, doctors appointments, physical pain, memory loss, financial hardship and for me depression. By this time I can barley keep up with taking care of myself let alone my family and then those God called us to minister to. I felt like so much had been taken away and now I can't even see a purpose in this because we are not effective in ministry. How are we going to take care of others? How am I supposed to share the Gospel when I can't remember why I grounded my teenager. I spent almost a year not being able to read because of the pain in my eyes and head and because of the blurred vision. What I did read I did not retain and again my short term memory kept me from remembering new names and faces. I was more and more aware of my brokenness as days went by. As we found some answers and we started treatment I began to gain some of my confidence back but that would soon dwindle again. Eventually I found myself not only broken but crushed as well.
I started 2 new studies at the church this semester. One study has been too overwhelming and too difficult to keep up with. I still have a difficult time retaining information. The other study was not as "deep" as my Beth Moore study and we easier for me to keep up with. We are one week from finishing the study and God has used it encourage me, teach me and equip me for the next step of ministry. I still do not know what that looks like but he has given me a glimpse through the ladies in this study. He is teaching me that instead of hiding my broken vessel until I can get it all patched up I need to let it be seen by others. This is not easy. It means being vulnerable and humble. It means showing those around me that I am more than scratch and dent that I am duck tape and super glue. He is teaching me to bravely share things that I would rather keep to myself. To allow others to pray for me and to encourage me. I would rather be the encourager but I am learning that sometimes God asks us to learn the things we are not good at. If I am good at encouraging others but not at receiving and others are good at receiving and not encouraging then we need each other. We need to offer a safe place for each other to learn. That is what God has given me through this study. He has given me a safe place to learn how to let others encourage me while at the same time giving them opportunities to learn how to respond to those needs. Either way we need each other so that we can become more like HIM. I know that there is still so much more for me to learn. I never thought that I had arrived before this I just didn't understand how God could use me in this state of brokenness.
My heart is still chasing after him. I just run a little slower than I use to. He knows the frailty of my body but he also knows the condition of my heart. My prayer is that I will find a way to focus on my heart and let God focus on the rest. If my mind is not clear but my heart does not waiver then I know that my God will not lead me astray.
Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. Proverbs 3:5-6
Monday, February 13, 2012
Update on our Trip to Little Rock
After a long and disappointing trip we are home from Little Rock. We were not expecting this appointment to be a walk in the park but on the other hand we were not expecting the obstacles thrown our way nor the out come that we got. My neurologist in Fayetteville made the referral the first part of November and so we have been waiting to get a second opinion for 3 months. Since the referral many of the neurological symptoms are better or have gone away. Some continue, others come and go and some are getting worse. Every day is a guess as to what we will see.
We left for Little Rock after church Sunday leaving the kids at home with friends. James and I were over half way to Little Rock when Kayla called to inform us that the nurse practitioner from the Neurology clinic called and canceled my appointment. Kayla told her that we were on our way to Little Rock. Evidently this did not register with the nurse or she just didn't care. The call came in as a private number and they did not leave us a way to contact them. We were not sure what to do and we are very upset that they had put Kayla in this position. We called UMAS and talked to the only person we could reach. The woman we spoke to said she was very surprised; that if they were going to cancel they would wait until the next day when they received word form the hospital. With the help of our only contact we made a decision to continue as planned. She gave us a list of numbers to call starting at 7:30 am. We had already paid for our hotel so we knew we would be out that money if we went home. Not to mention the time we took off of work and all the arrangements we had to make for the kids. We were committed to the process...we would have to wait and see how committed they were.
We arrived in Little Rock, found our hotel and then headed to find some dinner. We spent well over an hour and a half trying to find something open on a Sunday night. We kept finding places that were covered in iron bars with neon liquor signs. Not what we were looking for. We headed back to our hotel and ended up using an app that led us to a pizza place. They were open and ended up being 4 blocks from our hotel so we took the truck back and walked to dinner. By this time I just wanted to go to bed. I had not changed shoes from church so my feet were hurting, I did not have my coat so I was freezing and it was late so my blood sugar had crashed. While we were walking to dinner guys were trying to get us to buy things and there were several intoxicated men roaming the streets. At one point I pulled my phone out of my purse and put it in my pocket. If someone stole my purse I would at least have my phone. The pizza was good but it was a bar scene and super loud. James can assure you...I was in a lousy mood.
We really didn't sleep well. I was up at 5 and could not get back to sleep. Spent a lot of time praying. At 7am we started watching the news and then tried to find out if our kids were in school. I started making calls around 7:30 and finally reached someone at the clinic around 8:30. They said that I was scheduled to see a nurse practitioner not a doctor and that she specialized in headaches. This is not what we were expecting. She had canceled all her appointments for the day and was not at work. We told them our situation and asked if they could find a way for us to see a neurologist since we were already in Little Rock. When we told them why I had been referred they said that the Neurologist who specialized in that area canceled all his appointments too and was not in. They finally told me I could see a doctor in a different specialty field but that she would still be a neurologist. At least we would not be wasting a trip. We quickly showered, packed and left the hotel. (Which means we missed the ducks again. We arrived to late the day before because we pulled over to sort out all the mess with my canceled appointment. Now we were leaving the hotel several hours early.) We were really looking forward to having some time unwind and relax before the appointment. I even took all 4 of my Bible studies thinking I would have some down time.
As we were leaving the hotel God just kept giving me the song that talks about God turning things into good as only he could. I felt God's peace as he kept whispering these words to me. Sometimes what seems like a rotten deal to us is something that he is going to use for good. I just needed to trust him. Maybe God new all along that we were not suppose to see the one I was scheduled to see. After all we went from having an appointment with a nurse practitioner that specializes in headaches to an actual Neurological MD. We really felt God's hand moving us through this.
We arrived at the clinic and they got me right in. I actually was moving from one room to another so quickly that I was having trouble filling out all the new patient paper work. We were only in the room for a few minuets before the doctor came in. They told me I would end up seeing a woman but it ended up being a man. I guess he drew the short straw. He was pretty nice. Started asking me about my headaches. We finally established why I was really there and he said "boy would the nurse be overwhelmed with this. This is not what she does". So again we felt that God was at work. He asked if we had any medical records with us. I told him that my neurologist in Fayetteville sent them to Little Rock months ago so all we brought were the MRI scans. We were told before leaving Fayetteville that all of my medical records had been signed out and sent to UMAS. I felt uneasy about weather or not they would have the actual MRI images or just reports so we had a copy burned for us to take. That took several trips to Fayetteville and I kept thinking that I was being paranoid and that I was wasting my time. It ended up being our saving grace. At least we thought so. They were not able to locate any medical records for me. The doctor spent an hour just typing notes form the records that we brought from home. We did not have a copy of any labs done through neurology, or the spinal tap or any notes that were taken from those initial neurology appointments. Needless to say he was winging everything except the images he could see on the scans and the things we could tell him. He did several test to check my balance, my memory, strength and how much I could feeling I had in my hands, feet and legs. I was not able to feel any of the pin pricks or vibrations in my right foot. I was not able to keep my balance during 3 different test and I could not repeat all 3 words I was supposed to remember. Finally he left the room so he could read the MRI results.
When he came back he asked if we would like some news. Of course we want news isn't that why we came. He said well it's not MS and it's not Cadasil. Okay so what are we looking at? He told me that I had normal scans for my age. That the lesions were nothing to worry about. We asked him about the balance and memory issues. He said my memory was great and so was my balance. He just did those test and saw that I was unable to do them. We asked him what would be causing the other symptoms that we talked about. He said I was probably having mini strokes and that I should take an aspirin every day. What? He just said my scans were fine. Not to mention that I have already been through numerous test to rule that out. All my MRI reports define the lesions as Demyelination not mini strokes. Didn't he just say my lesions were from normal aging? So what if the lesions are from mini strokes? Would that be causing my symptoms? This is where I feel sick and not for the reasons that I thought I would. He told me it was caused from anxiety and that I needed to get a Psych Council. Seriously? I could not believe what I was hearing. We have scans that show damage, reports that show clinical symptoms seen by a neurologist and test results that show actual nerve damage and this guy is telling me that I have been sick for 18 months because I have anxiety. I managed to keep my wits about me as long as I could. I asked what I thought was intelligent questions trying to make sense of what he was saying and he just kept going back to anxiety. I believe that stress and anxiety can cause a lot of health problems and I am not opposed to seeking counseling if needed but we have too many things that point to something else. I talked to him about the severe B12 deficiency and how I responded to therapy for that. He said I had a placebo effect and that he would not count that as a reliable treatment. I finally had enough and had to leave. I still kept calm but made it clear that I was done and so was he.
I left with disbelief, feeling sick to my stomach and feeling like a failure. We had no new answers and no idea where we go from here. We have spent thousand's of dollars and we have done everything the doctors have asked us to do. Even when it seemed useless we still gave it a try. I am tired of chasing rabbit trails and having my body poked and prodded. I do not know what to do with the information that we received today. I just know that I want the appointments to end and I want my life back. If I have any anxiety it is because I have been sick for 18 months and have been through 6 months of intense medical testing with no solid answers; only conflicting medical opinions. I am weary and I am tired of fighting for a solution. I don't know what good came from this trip or what we are supposed to learn from this but I do know that God is in control and that he is the great physician. I do believe that he can still turn this into something good. We just might not see it today.
We left for Little Rock after church Sunday leaving the kids at home with friends. James and I were over half way to Little Rock when Kayla called to inform us that the nurse practitioner from the Neurology clinic called and canceled my appointment. Kayla told her that we were on our way to Little Rock. Evidently this did not register with the nurse or she just didn't care. The call came in as a private number and they did not leave us a way to contact them. We were not sure what to do and we are very upset that they had put Kayla in this position. We called UMAS and talked to the only person we could reach. The woman we spoke to said she was very surprised; that if they were going to cancel they would wait until the next day when they received word form the hospital. With the help of our only contact we made a decision to continue as planned. She gave us a list of numbers to call starting at 7:30 am. We had already paid for our hotel so we knew we would be out that money if we went home. Not to mention the time we took off of work and all the arrangements we had to make for the kids. We were committed to the process...we would have to wait and see how committed they were.
We arrived in Little Rock, found our hotel and then headed to find some dinner. We spent well over an hour and a half trying to find something open on a Sunday night. We kept finding places that were covered in iron bars with neon liquor signs. Not what we were looking for. We headed back to our hotel and ended up using an app that led us to a pizza place. They were open and ended up being 4 blocks from our hotel so we took the truck back and walked to dinner. By this time I just wanted to go to bed. I had not changed shoes from church so my feet were hurting, I did not have my coat so I was freezing and it was late so my blood sugar had crashed. While we were walking to dinner guys were trying to get us to buy things and there were several intoxicated men roaming the streets. At one point I pulled my phone out of my purse and put it in my pocket. If someone stole my purse I would at least have my phone. The pizza was good but it was a bar scene and super loud. James can assure you...I was in a lousy mood.
We really didn't sleep well. I was up at 5 and could not get back to sleep. Spent a lot of time praying. At 7am we started watching the news and then tried to find out if our kids were in school. I started making calls around 7:30 and finally reached someone at the clinic around 8:30. They said that I was scheduled to see a nurse practitioner not a doctor and that she specialized in headaches. This is not what we were expecting. She had canceled all her appointments for the day and was not at work. We told them our situation and asked if they could find a way for us to see a neurologist since we were already in Little Rock. When we told them why I had been referred they said that the Neurologist who specialized in that area canceled all his appointments too and was not in. They finally told me I could see a doctor in a different specialty field but that she would still be a neurologist. At least we would not be wasting a trip. We quickly showered, packed and left the hotel. (Which means we missed the ducks again. We arrived to late the day before because we pulled over to sort out all the mess with my canceled appointment. Now we were leaving the hotel several hours early.) We were really looking forward to having some time unwind and relax before the appointment. I even took all 4 of my Bible studies thinking I would have some down time.
As we were leaving the hotel God just kept giving me the song that talks about God turning things into good as only he could. I felt God's peace as he kept whispering these words to me. Sometimes what seems like a rotten deal to us is something that he is going to use for good. I just needed to trust him. Maybe God new all along that we were not suppose to see the one I was scheduled to see. After all we went from having an appointment with a nurse practitioner that specializes in headaches to an actual Neurological MD. We really felt God's hand moving us through this.
We arrived at the clinic and they got me right in. I actually was moving from one room to another so quickly that I was having trouble filling out all the new patient paper work. We were only in the room for a few minuets before the doctor came in. They told me I would end up seeing a woman but it ended up being a man. I guess he drew the short straw. He was pretty nice. Started asking me about my headaches. We finally established why I was really there and he said "boy would the nurse be overwhelmed with this. This is not what she does". So again we felt that God was at work. He asked if we had any medical records with us. I told him that my neurologist in Fayetteville sent them to Little Rock months ago so all we brought were the MRI scans. We were told before leaving Fayetteville that all of my medical records had been signed out and sent to UMAS. I felt uneasy about weather or not they would have the actual MRI images or just reports so we had a copy burned for us to take. That took several trips to Fayetteville and I kept thinking that I was being paranoid and that I was wasting my time. It ended up being our saving grace. At least we thought so. They were not able to locate any medical records for me. The doctor spent an hour just typing notes form the records that we brought from home. We did not have a copy of any labs done through neurology, or the spinal tap or any notes that were taken from those initial neurology appointments. Needless to say he was winging everything except the images he could see on the scans and the things we could tell him. He did several test to check my balance, my memory, strength and how much I could feeling I had in my hands, feet and legs. I was not able to feel any of the pin pricks or vibrations in my right foot. I was not able to keep my balance during 3 different test and I could not repeat all 3 words I was supposed to remember. Finally he left the room so he could read the MRI results.
When he came back he asked if we would like some news. Of course we want news isn't that why we came. He said well it's not MS and it's not Cadasil. Okay so what are we looking at? He told me that I had normal scans for my age. That the lesions were nothing to worry about. We asked him about the balance and memory issues. He said my memory was great and so was my balance. He just did those test and saw that I was unable to do them. We asked him what would be causing the other symptoms that we talked about. He said I was probably having mini strokes and that I should take an aspirin every day. What? He just said my scans were fine. Not to mention that I have already been through numerous test to rule that out. All my MRI reports define the lesions as Demyelination not mini strokes. Didn't he just say my lesions were from normal aging? So what if the lesions are from mini strokes? Would that be causing my symptoms? This is where I feel sick and not for the reasons that I thought I would. He told me it was caused from anxiety and that I needed to get a Psych Council. Seriously? I could not believe what I was hearing. We have scans that show damage, reports that show clinical symptoms seen by a neurologist and test results that show actual nerve damage and this guy is telling me that I have been sick for 18 months because I have anxiety. I managed to keep my wits about me as long as I could. I asked what I thought was intelligent questions trying to make sense of what he was saying and he just kept going back to anxiety. I believe that stress and anxiety can cause a lot of health problems and I am not opposed to seeking counseling if needed but we have too many things that point to something else. I talked to him about the severe B12 deficiency and how I responded to therapy for that. He said I had a placebo effect and that he would not count that as a reliable treatment. I finally had enough and had to leave. I still kept calm but made it clear that I was done and so was he.
I left with disbelief, feeling sick to my stomach and feeling like a failure. We had no new answers and no idea where we go from here. We have spent thousand's of dollars and we have done everything the doctors have asked us to do. Even when it seemed useless we still gave it a try. I am tired of chasing rabbit trails and having my body poked and prodded. I do not know what to do with the information that we received today. I just know that I want the appointments to end and I want my life back. If I have any anxiety it is because I have been sick for 18 months and have been through 6 months of intense medical testing with no solid answers; only conflicting medical opinions. I am weary and I am tired of fighting for a solution. I don't know what good came from this trip or what we are supposed to learn from this but I do know that God is in control and that he is the great physician. I do believe that he can still turn this into something good. We just might not see it today.
Friday, January 20, 2012
During one of my resent doctors appointments a new deficiency was discovered. The frustrating part about this new discovery was that the test was done some time ago but the doctor that ordered the test and delivered the results decided it was not a big deal. He was the right doctor to order the test, read the results and take action. This is part of his specialty. When they called me with the results they said my testosterone was a little low. I was concerned about some other levels that had continued to decline even on treatment so I was focused elsewhere. Then on Monday I saw my gyn for a followup. He looked at all my previous labs and noticed that in August my testosterone was very low at 15. I told him that we had a current lab that also showed it was low but that I did not have a copy and I did not know the number. He searched for the results and found a report that stated it was low but had no number. He continued to look through labs until he found the actual results. His exact expression was "Oh Wow! That is not good." I asked him what the number was and he said it was undetectable.
So what exactly does this mean? Most people including myself thought no big deal this only effects your libido. What harm can this do to your body? I have too many other things to be concerned about. The answer is...it can cause a lot of damage. One of the major problems we have been up against this past year is loss of muscle strength and my muscles starting to atrophy. We have looked into so many causes for this. Unfortunately because of all the neurological symptoms and the damage that was discovered in the white matter of my brain it is difficult to find the exact cause of each symptom. We have chased so many rabbit trails and I have undergone so many test with the hope that we might stumble upon an answer.
To be clear this does not mean that we have an answer to the problem but that we have one more piece of the puzzle. It also means that we have another hurdle to jump. One of the reasons this was such a huge surprise is because I have an endocrine disorder that causes me to have extremely high levels of testosterone. Now I have an undetectable level. This also adds to the mystery of all the vitamin deficiency. To date we are treating for deficiencies in iron, B12, B6, D, and now testosterone. I take supplements for many other vitamins because they are so low and we are trying to prevent a full blown deficiency in those as well. I am taking prescription strength doses yet we continue to watch these numbers fall. The only progress that we have made is with B12 and that is injected into one of my muscles every week. My iron continues to drop. It has dropped as much as 45 points in 8 weeks. I have been through all the test to check for bleeding but so far everything has come back clear.
I had another round of blood work done Wed to see if any of my levels are improving. If they continue to drop and do not improve we will eventually get to a place where I have to start having some of these given by infusion. This is very expensive, time consuming and can cause serious side effects. Our prayer is that we will find the source and start seeing some progress. For now we continue to treat, test and wait.
So what exactly does this mean? Most people including myself thought no big deal this only effects your libido. What harm can this do to your body? I have too many other things to be concerned about. The answer is...it can cause a lot of damage. One of the major problems we have been up against this past year is loss of muscle strength and my muscles starting to atrophy. We have looked into so many causes for this. Unfortunately because of all the neurological symptoms and the damage that was discovered in the white matter of my brain it is difficult to find the exact cause of each symptom. We have chased so many rabbit trails and I have undergone so many test with the hope that we might stumble upon an answer.
To be clear this does not mean that we have an answer to the problem but that we have one more piece of the puzzle. It also means that we have another hurdle to jump. One of the reasons this was such a huge surprise is because I have an endocrine disorder that causes me to have extremely high levels of testosterone. Now I have an undetectable level. This also adds to the mystery of all the vitamin deficiency. To date we are treating for deficiencies in iron, B12, B6, D, and now testosterone. I take supplements for many other vitamins because they are so low and we are trying to prevent a full blown deficiency in those as well. I am taking prescription strength doses yet we continue to watch these numbers fall. The only progress that we have made is with B12 and that is injected into one of my muscles every week. My iron continues to drop. It has dropped as much as 45 points in 8 weeks. I have been through all the test to check for bleeding but so far everything has come back clear.
I had another round of blood work done Wed to see if any of my levels are improving. If they continue to drop and do not improve we will eventually get to a place where I have to start having some of these given by infusion. This is very expensive, time consuming and can cause serious side effects. Our prayer is that we will find the source and start seeing some progress. For now we continue to treat, test and wait.
Wednesday, January 18, 2012
My First Appointment With a Neurologist
This is another "fill in the gap" post. I admit that we did not share a lot of information about my health situation for way to long. In my mind I had several good reasons for leaving people out of the loop. In hind sight what I did most was alienate myself and my family when we needed it the most. There are many reasons why we did not go into great detail at the time but on the other hand God is teaching me that we did the very thing we teach others not to do. I want to post more on this but it is better suited for a different post. For now I will stick to the details surrounding my first appointment with the Neurologist in Fayetteville.
Soon after I begin having real conversations about my symptoms with James and with my PCP my doctor determined that my symptoms were becoming more serious and that I needed to see a Neurologist. I was relieved because I might be able to get some relief. James on the other hand took the referral more serious and was more concerned about what they might find.
While waiting for my first appointment to see the neurologist my symptoms continued. I was also having new symptoms almost daily. My hands were turning red and feverish as I would use them. It would go away as quickly as it would come on. I started having tremors all over my body that would cause me to shake like I was having a seizure. I was having stabbing pains through my body and I started to have sever heart palpation. The muscle spasms were getting worse causing many sleepless nights. Some nights I would have them every hour. I was having strange pressure in my ears that felt like some one was trying to shove a soup can through my ear from the inside out. At this point I was having to rest a lot, was in pain daily and my body was very weak and I was falling more often.
On September 28th we met with a neurologist in Fayetteville. As we waited for this appointment I began to research B12 deficiency. I went to the appointment with a tremendous amount of peace because so many of my symptoms were explained by this deficiency. I also went with an agenda. This was a bad idea. Partly because he was not very receptive to being told how we were going to proceed. My sister had seen several Neurologist and still had no idea what was happening. They wasted precious time that would cause them to loose a window of opportunity to test and treat for GB. Several told her it was in all in her mind. I was not going to waste time with any doctor. I was tired of being in pain and I was ready to get back to life. I had an agenda and a budget and he needed to make it work.
My agenda was not the only thing that caused my appointment to be stressful. James had taken the day off to go to the with me. It was very important for him to be there since we had so mush information to get through. Unfortunately we waited in the waiting room for two hours before we were called back. We were suppose to be done before the kids were out of school so we did not make arrangement's for them. James was able to stay while we talked to the nurse and gave her a history of my symptoms. Then he had to leave to pick up one of the kids from school. He came back as soon as he could but he was not able to meet with the Dr. Because the doctor was so late he ended up talking to me for 15 minuets. I was a new patient and was scheduled for an hour. We rushed through an exam and he scheduled an MRI of the brain and C Spine. I had an appointment to come back a week later. Before I left the nurse started to tell me what the process is for MS patients. This was a big shock. It did not fall into my plan for the appointment and as far as I could tell they had already decided what was wrong.
A few days later I went for my MRI's and then returned on that Friday for the results. James met the Neurologist for the first time that day. I think he came with an open mind. I came with my mind made up and ready for him to tell me that every thing was B12 related and that things would be back to normal soon. I was not prepared for what came next. He told us that my C Spine looked great but that the MRI of the brain came back abnormal. At this point he had our full attention. He told us that I had scattered white matter lesions on my brain. He said that everyone develops lesions as they age but that I was too young to have the number of lesions that they found. The lesions that were found showed that I had a Demyelinating Disease. We would not come out and tell us what he thought this meant. I asked him if this was from the B12...still determined to just be done with this awe full nightmare. He said no and he said it with confidence. He scheduled 3 more MRI's and blood work.
We left the office and went downstairs to the lab. We waited for over an hour for someone to come talk to us about labs. Finally a lady came out and said she was sorry it was taking so long, that my labs were complicated and that it was taking a long time to print out all the release forms. I have never heard of having to sign a release form for blood work. She said she would explain when she called me back. About 30 minuets later she called us back to begin lab work. This is the moment that we realized the seriousness of what we were up against. I walked into the lab where they had prepared 19 viles to collect blood. She handed me a stack of paper work and a release form stating that we agreed to pay the $5,000 in labs that were about to be drawn. We told her we had insurance and she said that insurance would most likely not cover these test and that they would not draw labs until we signed this paper saying we were responsible for paying them. We had never been faced with this before. We have good insurance and all our labs are covered but what if we were wrong. We don't have $5,000 to pay for them. We decided to leave with out doing blood work and that we would call insurance so we would know what we were up against. For the next 2 and a half weeks we fought insurance and ended up finding out that they would not cover the 2 genetic test that were ordered but they would cover everything else. I returned at the end of October to have labs drawn. By the end of that week they ended up taking 26 viles of blood. The following week (first week in November) brought more labs along with a lumbar puncture (spinal tap). I had given 31 viles of blood in about 10 days. I asked one of the nurses if that was safe or legal. All we could do is wait for results as symptoms continued to arise.
Soon after I begin having real conversations about my symptoms with James and with my PCP my doctor determined that my symptoms were becoming more serious and that I needed to see a Neurologist. I was relieved because I might be able to get some relief. James on the other hand took the referral more serious and was more concerned about what they might find.
While waiting for my first appointment to see the neurologist my symptoms continued. I was also having new symptoms almost daily. My hands were turning red and feverish as I would use them. It would go away as quickly as it would come on. I started having tremors all over my body that would cause me to shake like I was having a seizure. I was having stabbing pains through my body and I started to have sever heart palpation. The muscle spasms were getting worse causing many sleepless nights. Some nights I would have them every hour. I was having strange pressure in my ears that felt like some one was trying to shove a soup can through my ear from the inside out. At this point I was having to rest a lot, was in pain daily and my body was very weak and I was falling more often.
On September 28th we met with a neurologist in Fayetteville. As we waited for this appointment I began to research B12 deficiency. I went to the appointment with a tremendous amount of peace because so many of my symptoms were explained by this deficiency. I also went with an agenda. This was a bad idea. Partly because he was not very receptive to being told how we were going to proceed. My sister had seen several Neurologist and still had no idea what was happening. They wasted precious time that would cause them to loose a window of opportunity to test and treat for GB. Several told her it was in all in her mind. I was not going to waste time with any doctor. I was tired of being in pain and I was ready to get back to life. I had an agenda and a budget and he needed to make it work.
My agenda was not the only thing that caused my appointment to be stressful. James had taken the day off to go to the with me. It was very important for him to be there since we had so mush information to get through. Unfortunately we waited in the waiting room for two hours before we were called back. We were suppose to be done before the kids were out of school so we did not make arrangement's for them. James was able to stay while we talked to the nurse and gave her a history of my symptoms. Then he had to leave to pick up one of the kids from school. He came back as soon as he could but he was not able to meet with the Dr. Because the doctor was so late he ended up talking to me for 15 minuets. I was a new patient and was scheduled for an hour. We rushed through an exam and he scheduled an MRI of the brain and C Spine. I had an appointment to come back a week later. Before I left the nurse started to tell me what the process is for MS patients. This was a big shock. It did not fall into my plan for the appointment and as far as I could tell they had already decided what was wrong.
A few days later I went for my MRI's and then returned on that Friday for the results. James met the Neurologist for the first time that day. I think he came with an open mind. I came with my mind made up and ready for him to tell me that every thing was B12 related and that things would be back to normal soon. I was not prepared for what came next. He told us that my C Spine looked great but that the MRI of the brain came back abnormal. At this point he had our full attention. He told us that I had scattered white matter lesions on my brain. He said that everyone develops lesions as they age but that I was too young to have the number of lesions that they found. The lesions that were found showed that I had a Demyelinating Disease. We would not come out and tell us what he thought this meant. I asked him if this was from the B12...still determined to just be done with this awe full nightmare. He said no and he said it with confidence. He scheduled 3 more MRI's and blood work.
We left the office and went downstairs to the lab. We waited for over an hour for someone to come talk to us about labs. Finally a lady came out and said she was sorry it was taking so long, that my labs were complicated and that it was taking a long time to print out all the release forms. I have never heard of having to sign a release form for blood work. She said she would explain when she called me back. About 30 minuets later she called us back to begin lab work. This is the moment that we realized the seriousness of what we were up against. I walked into the lab where they had prepared 19 viles to collect blood. She handed me a stack of paper work and a release form stating that we agreed to pay the $5,000 in labs that were about to be drawn. We told her we had insurance and she said that insurance would most likely not cover these test and that they would not draw labs until we signed this paper saying we were responsible for paying them. We had never been faced with this before. We have good insurance and all our labs are covered but what if we were wrong. We don't have $5,000 to pay for them. We decided to leave with out doing blood work and that we would call insurance so we would know what we were up against. For the next 2 and a half weeks we fought insurance and ended up finding out that they would not cover the 2 genetic test that were ordered but they would cover everything else. I returned at the end of October to have labs drawn. By the end of that week they ended up taking 26 viles of blood. The following week (first week in November) brought more labs along with a lumbar puncture (spinal tap). I had given 31 viles of blood in about 10 days. I asked one of the nurses if that was safe or legal. All we could do is wait for results as symptoms continued to arise.
Tuesday, January 10, 2012
Not a good day.
I was hoping to fill in some more gaps tonight. I really want to try to keep posting because I really do feel like it is good therapy. Unfortunately today was a tough day with some challenges. As I type this my hands are not working as well as they should and my mind in pretty cloudy. It takes a lot of energy to focus and to type. My hands and arms are very weak today and I have been in a lot of pain today. I made an appointment with my dr today but he can not see me until next week. Usually I can get in the same day or the next. It's ok though because I really like my PCP and he is worth waiting to see.
It is hard to get used to these set backs. I made the decision to stop my injections until I see the Neurologist at UMAS. My neurologist in Fayetteville said I should be able to make it a month between injections by now but I have set backs as little as 1 week apart. We are going to see if the injections are masking symptoms. I need the UMAS doctor to see exactly what is happening. This means that we might see more set backs between now and then. For now we think this is the best thing to do even if it means some temporary frustration. I'm back to having to rest a lot during the days. I try to be up and around as much as possible when the kids are home but I am already tired of feeling this way again.
This is all I have for tonight. I will try to add more tomorrow.
It is hard to get used to these set backs. I made the decision to stop my injections until I see the Neurologist at UMAS. My neurologist in Fayetteville said I should be able to make it a month between injections by now but I have set backs as little as 1 week apart. We are going to see if the injections are masking symptoms. I need the UMAS doctor to see exactly what is happening. This means that we might see more set backs between now and then. For now we think this is the best thing to do even if it means some temporary frustration. I'm back to having to rest a lot during the days. I try to be up and around as much as possible when the kids are home but I am already tired of feeling this way again.
This is all I have for tonight. I will try to add more tomorrow.
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