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.
Monday, February 13, 2012
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.
Sunday, January 8, 2012
How We Got Here...Continued.
This is where things get complicated. Not just medically but in trying to write down how we got here. There are a lot of holes in my memory as this is one of the things that has been affected. Another reason for me starting this blog is for therapy. Not just emotional therapy but also physical therapy. I spent a great deal of time with my mind idle due to the inability to process information. I may end up jumping around some but I will try to stay on track as much as I can.
As most of you know we had a very hash winter. It was very cold and we had a ton of snow. This ended up being very hard on me physically. After Grandma died I ended up with a respiratory infection. This was followed by over a month of mouth sores and flu like symptoms. I just couldn't seem to fight off what ever was attacking my system. At the same time we learned that James' dad had become ill. His lungs were shutting down. We also found out that my sister did not have ALS nor did she have MS. After 2 months of doctors appointments they finally said that she might have Gunilla-barré syndrome. She believed that this was the case from the beginning. Unfortunately because they would not test her early they had lost the window of opportunity that would allow them to do so.
As we headed into February my body became weaker and weaker. My muscles hurt all the time, I was having terrible headaches, I was weak and I was always painfully cold. Usually I am the one that is hot and running fans while others are wrapped in blankets. My bones would ache like they were broken. I would not go outside unless I had to. Any light caused my eyes to burn and my head to ache. I was having more and more anxiety and was dealing with bouts of anger. I felt like I had the flu day after day after day. There was no relief. No matter what I took I had no relief.
During this time we had Abbie staying with us. Her mom and dad were in Ukraine bringing home their other two children. They were hoping for things to go quickly and that there time in Ukraine would be short. Instead they were there for two months. This was taking a toll on Abbie and while we loved having her we were not expecting my health to get so bad.
We were starting to see some relief form the crazy winter storms as we were entering spring break. I was looking forward to getting back on our feet. I was still feeling bad but I was determined to beat what ever was attacking me. I was still having to sleep a lot as I was still very weak and tired all the time. On the Sunday leading into Spring Break our youngest plugged our main toilet causing the back part of our house to flood with "poo water". I was laying down and James was gone. The kids called James and tried to fix it on their own to spare me the problem. Instead it only intensified. I snapped. James came home and basically grounded me to my room while he tried to clean it up. We ended up having to call insurance and we had to have all the flooring replaced. We were able to have the tile in the bathroom cleaned and the bedrooms were okay but the rest of the flooring in the house had to be replaced. Months later we would find out that they did not check Kayla's room closely and it damaged her flooring and furniture.
I do not remember when this happened but at some point I told my doctor that I could not live like this anymore. We have to do something because something was wrong. I ended up seeing my gyn and she believed that I was in the beginning stages of fibromyalgia. After talking to my doctor he referred me to a Rheumatologists. I was not able to get an appointment with him until March 2012. My PCP decided to start me on the medications for Fibromyalgia. Over time I started to see some improvement with the pain.
In the mean time I was having other symptoms that I was not telling people about. I would kind of talk about them in passing but friends would say "oh I forget my keys too" and things like that so I let it go. As time went on things were getting worse. My toes were painfully numb, I was having electric shocks that would go through my arms and legs, my balance was getting worse, I was getting lost and I was forgetting how to do daily task. I was dropping things all the time and I was starting to have spastic movements with my hands that would cause me to throw things when I would try to use my hands. I could not grasp things with my hands, could not use scissors and I was losing most of my fine motor skills. I was not able to tell where I was in relation to things around me so I would run into things and I could not pour the kids a cup of milk with out spilling it everywhere. I began to have blurred vision that made it impossible to read. The list literally goes on and on. My physician was growing more and more concerned and recommended that I see a Neurologist.
While waiting for that appointment I ended up seeing an Endocrinologist for the endocrine disease that I was diagnosed with while going through fertility treatment 10 years ago. As soon as she saw me and did the initial exam she said "you have B12 deficiency". This was the beginning of a very long road but was also the beginning to some answers we were praying for. She started labs and started me on high doses of B12. Our next step was to see the Neurologist.
As most of you know we had a very hash winter. It was very cold and we had a ton of snow. This ended up being very hard on me physically. After Grandma died I ended up with a respiratory infection. This was followed by over a month of mouth sores and flu like symptoms. I just couldn't seem to fight off what ever was attacking my system. At the same time we learned that James' dad had become ill. His lungs were shutting down. We also found out that my sister did not have ALS nor did she have MS. After 2 months of doctors appointments they finally said that she might have Gunilla-barré syndrome. She believed that this was the case from the beginning. Unfortunately because they would not test her early they had lost the window of opportunity that would allow them to do so.
As we headed into February my body became weaker and weaker. My muscles hurt all the time, I was having terrible headaches, I was weak and I was always painfully cold. Usually I am the one that is hot and running fans while others are wrapped in blankets. My bones would ache like they were broken. I would not go outside unless I had to. Any light caused my eyes to burn and my head to ache. I was having more and more anxiety and was dealing with bouts of anger. I felt like I had the flu day after day after day. There was no relief. No matter what I took I had no relief.
During this time we had Abbie staying with us. Her mom and dad were in Ukraine bringing home their other two children. They were hoping for things to go quickly and that there time in Ukraine would be short. Instead they were there for two months. This was taking a toll on Abbie and while we loved having her we were not expecting my health to get so bad.
We were starting to see some relief form the crazy winter storms as we were entering spring break. I was looking forward to getting back on our feet. I was still feeling bad but I was determined to beat what ever was attacking me. I was still having to sleep a lot as I was still very weak and tired all the time. On the Sunday leading into Spring Break our youngest plugged our main toilet causing the back part of our house to flood with "poo water". I was laying down and James was gone. The kids called James and tried to fix it on their own to spare me the problem. Instead it only intensified. I snapped. James came home and basically grounded me to my room while he tried to clean it up. We ended up having to call insurance and we had to have all the flooring replaced. We were able to have the tile in the bathroom cleaned and the bedrooms were okay but the rest of the flooring in the house had to be replaced. Months later we would find out that they did not check Kayla's room closely and it damaged her flooring and furniture.
I do not remember when this happened but at some point I told my doctor that I could not live like this anymore. We have to do something because something was wrong. I ended up seeing my gyn and she believed that I was in the beginning stages of fibromyalgia. After talking to my doctor he referred me to a Rheumatologists. I was not able to get an appointment with him until March 2012. My PCP decided to start me on the medications for Fibromyalgia. Over time I started to see some improvement with the pain.
In the mean time I was having other symptoms that I was not telling people about. I would kind of talk about them in passing but friends would say "oh I forget my keys too" and things like that so I let it go. As time went on things were getting worse. My toes were painfully numb, I was having electric shocks that would go through my arms and legs, my balance was getting worse, I was getting lost and I was forgetting how to do daily task. I was dropping things all the time and I was starting to have spastic movements with my hands that would cause me to throw things when I would try to use my hands. I could not grasp things with my hands, could not use scissors and I was losing most of my fine motor skills. I was not able to tell where I was in relation to things around me so I would run into things and I could not pour the kids a cup of milk with out spilling it everywhere. I began to have blurred vision that made it impossible to read. The list literally goes on and on. My physician was growing more and more concerned and recommended that I see a Neurologist.
While waiting for that appointment I ended up seeing an Endocrinologist for the endocrine disease that I was diagnosed with while going through fertility treatment 10 years ago. As soon as she saw me and did the initial exam she said "you have B12 deficiency". This was the beginning of a very long road but was also the beginning to some answers we were praying for. She started labs and started me on high doses of B12. Our next step was to see the Neurologist.
Saturday, January 7, 2012
How We Got Here?
To be honest we are still trying to figure that out. There is still so much that does not make sense. So many questions unanswered. Due to test results we are not sure when the initial damage began but we started seeing noticeable symptoms over a year ago.
I started working with a new doctor in 2009 for an existing medical condition. I worked with this doctor every month for a year and during that time I was able to get some relief from that condition. I also worked with him concerning my weight. In a years time with the help of my physician I was able to loos 130 lbs. I was the healthiest I had been in years. I had a habit of putting everyone else first and not ever leaving time to take care of myself. True the Bible says to put others firsts but you still have to take care of your body. It is God's temple and I learned that there was nothing wrong with taking time to take care of myself.
Shortly after loosing so much weight I began having trouble with my balance. I would fall for no apparent reason and I was very clumsy. We would joke that I had lost so much weight that I lost my center of gravity. What we did not know was this was the beginning of a very serious problem.
In October of 2010 I started having sever pain in my upper back and ribs. I could not lay down due to the pain. I spent several nights sleeping (when I could sleep) sitting up. After several days I went to the doctor and found out that I was having a gallbladder attack. Within the week I was having surgery to remove my gallbladder. This was a simple surgery but I had a difficult time with recovery.
Shortly after surgery I began to have anxiety attacks. Sever anxiety attacks. My entire personality was changing. My family could tell and so could I. My doctor gave me a mild medication for depression and told me that with the surgery and with all the grief we had been through over the past 5 years my body was just tired. Reluctantly I started the medication. By the middle of December we knew that the medicine was only making things worse so he took me off of it. I think we tried something else that was a better fit but that too was short lived.
In December our family traveled to Florida to be with my sister and her family for Christmas. She was given a flu shot in November and by the end of that day she was unable to walk without her legs collapsing. She sounded fine when I would talk to her on the phone but the things she was telling me sounded serious. When I saw her at Christmas my heart was broken. She was having trouble using her hands and walking and I realized at that time that things were more serious than I thought. She did not sound sick but something was defiantly wrong.
We returned home from Florida at the end of December to the news that Grandma was in the hospital again. We were not too alarmed because she had been in and out since her surgery months previous to that. We had seen her at Thanksgiving and she looked great. We went straight to the hospital where we would learn that she was in ICU.
I will never forget holding her hand in ICU with her looking into my eyes while the doctors asked her son if he wanted to sign a do not resuscitate form. I knew it was serious and that we only had a short time left with her.Once we realized how serious things were James' family came as soon as possible. Our days were spent at the hospital spending as much time with her as possible. This was difficult though because she ended up being very contagious and so they made us suit up with gowns, gloves and mask everytime we entered her room.
On January 4th in the very early hours God called Grandma Patsy home and we began our earthly goodbyes. January 5th is my birthday as well as her only son's birthday. Grandma loved birthdays and this would prove to be a difficult birthday for us. I spent my birthday at the funeral home working on the details while the rest of the family had to deal with estate issues. My kids sat in the van because they refused to go into the funeral home. To top it off my sister was 14 hours away having test done to determine if she had ALS or MS. It was a very difficult day. The rest of the week we had to deal with the estate and get pictures ready for the service.
After the service was over and family returned home we started trying to get the kids back on some sort of routine. We thought we had made it over the hurdles and that life would finally return to "normal".
To Be Continued...
I started working with a new doctor in 2009 for an existing medical condition. I worked with this doctor every month for a year and during that time I was able to get some relief from that condition. I also worked with him concerning my weight. In a years time with the help of my physician I was able to loos 130 lbs. I was the healthiest I had been in years. I had a habit of putting everyone else first and not ever leaving time to take care of myself. True the Bible says to put others firsts but you still have to take care of your body. It is God's temple and I learned that there was nothing wrong with taking time to take care of myself.
Shortly after loosing so much weight I began having trouble with my balance. I would fall for no apparent reason and I was very clumsy. We would joke that I had lost so much weight that I lost my center of gravity. What we did not know was this was the beginning of a very serious problem.
In October of 2010 I started having sever pain in my upper back and ribs. I could not lay down due to the pain. I spent several nights sleeping (when I could sleep) sitting up. After several days I went to the doctor and found out that I was having a gallbladder attack. Within the week I was having surgery to remove my gallbladder. This was a simple surgery but I had a difficult time with recovery.
Shortly after surgery I began to have anxiety attacks. Sever anxiety attacks. My entire personality was changing. My family could tell and so could I. My doctor gave me a mild medication for depression and told me that with the surgery and with all the grief we had been through over the past 5 years my body was just tired. Reluctantly I started the medication. By the middle of December we knew that the medicine was only making things worse so he took me off of it. I think we tried something else that was a better fit but that too was short lived.
In December our family traveled to Florida to be with my sister and her family for Christmas. She was given a flu shot in November and by the end of that day she was unable to walk without her legs collapsing. She sounded fine when I would talk to her on the phone but the things she was telling me sounded serious. When I saw her at Christmas my heart was broken. She was having trouble using her hands and walking and I realized at that time that things were more serious than I thought. She did not sound sick but something was defiantly wrong.
We returned home from Florida at the end of December to the news that Grandma was in the hospital again. We were not too alarmed because she had been in and out since her surgery months previous to that. We had seen her at Thanksgiving and she looked great. We went straight to the hospital where we would learn that she was in ICU.
I will never forget holding her hand in ICU with her looking into my eyes while the doctors asked her son if he wanted to sign a do not resuscitate form. I knew it was serious and that we only had a short time left with her.Once we realized how serious things were James' family came as soon as possible. Our days were spent at the hospital spending as much time with her as possible. This was difficult though because she ended up being very contagious and so they made us suit up with gowns, gloves and mask everytime we entered her room.
On January 4th in the very early hours God called Grandma Patsy home and we began our earthly goodbyes. January 5th is my birthday as well as her only son's birthday. Grandma loved birthdays and this would prove to be a difficult birthday for us. I spent my birthday at the funeral home working on the details while the rest of the family had to deal with estate issues. My kids sat in the van because they refused to go into the funeral home. To top it off my sister was 14 hours away having test done to determine if she had ALS or MS. It was a very difficult day. The rest of the week we had to deal with the estate and get pictures ready for the service.
After the service was over and family returned home we started trying to get the kids back on some sort of routine. We thought we had made it over the hurdles and that life would finally return to "normal".
To Be Continued...
Friday, January 6, 2012
Seeking JOY in our Newest Journey
We are going to try using a different blog site to keep family and friends up to date about all things medical. It has been difficult to figure out the best way to keep everyone up to date. Please bear with us as we try to catch up on what has been happening this past year. It is difficult to know what to share and what not to share as things are ever changing and complicated.
One of the things we experienced form keeping our other blog is that when we keep a written track of our journey we are able to look back and see God's hand carrying us each step of the way. When you are in the midst of a season it is sometimes difficult to see God at work. Sometimes we are too close to see the whole picture and we need to be able to look at it in a different perspective at a latter time. I love how we are able to go back through our blog over and over again and see God's Grace written on every page. His faithfulness is so clear, his provision was never failing. Looking back helps us trust the future.
Thank you for joining us on this journey. Thank you for your support and prayers. Please do not be afraid to ask questions. If I am not able to talk about it that day I will be honest and get back with you as soon as I am able.
Our journey is still the same; we are just having to learn how to be more flexible, more creative and having to increase our sense of humor. After all laughter is the best medicine. God is still who he says he is and we still trust him to lead our family. God is still good all the time. All the time he is good. His plan is perfect for us even if we are not very fond of it.
In the midst of our new journey we are seeking JOY.
One of the things we experienced form keeping our other blog is that when we keep a written track of our journey we are able to look back and see God's hand carrying us each step of the way. When you are in the midst of a season it is sometimes difficult to see God at work. Sometimes we are too close to see the whole picture and we need to be able to look at it in a different perspective at a latter time. I love how we are able to go back through our blog over and over again and see God's Grace written on every page. His faithfulness is so clear, his provision was never failing. Looking back helps us trust the future.
Thank you for joining us on this journey. Thank you for your support and prayers. Please do not be afraid to ask questions. If I am not able to talk about it that day I will be honest and get back with you as soon as I am able.
Our journey is still the same; we are just having to learn how to be more flexible, more creative and having to increase our sense of humor. After all laughter is the best medicine. God is still who he says he is and we still trust him to lead our family. God is still good all the time. All the time he is good. His plan is perfect for us even if we are not very fond of it.
In the midst of our new journey we are seeking JOY.
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