I haven't written for a few days. Thursday and Friday the pain wasn't as strong then Saturday it was strong again and I'm not doing so great today either. It was a week of Thanksgiving and I know that I have much to be thankful for. At the same time, it is sad to miss Thanksgiving dinner with the family (Kyle & kids went to my in-laws) and not being able to participate in some of the traditions that we normally have at this time of the year. I missed a wedding last night and today my sister Renae had baby Jenna baptised. I missed it as well as the baptism of her last child, Alexa a little over a year ago. I want to be able to look at the blessings and gifts that I have been given but I am sad about the things I am missing and the memories that we aren't making with the kids. There are several programs the kids are in coming up that I so hope that I can attend!
In my studying for answers about Intracranial Hypertension (IH), I found that any type of physical exertion can cause the headaches to get much worse. That is actually a relief to me! I have been able to do so little and the smallest tasks leave me exhausted. When I was doing physical therapy it seemed as if I could do a small amount of things but if I pushed at all I would walk out with a nauseating headache that would last. The pt, with a kind smile, called my "exercises" a warm-up for the warm-up. It became very frustrating but now perhaps I have an explanation as to why I have been able to do so little. You do start playing mind games, wondering if you are truly just lazy and mentally hiding behind this or something. So I was relieved to hear that it was normal for this condition and not laziness on my part. I have normally always been the type of person that is on the go, always busy and rarely sitting down to just watch tv. This has been a dramatic change to my life in many ways, including that I can't do much but sit or lay all day.
The spinal tap, or lumbar puncture as the doctors call it, is scheduled for Tuesday. However, that is exactly 4 weeks to the day that I had the last one done. The neuro wanted me to have it 30 days later. I'm not sure if 2 days is a big deal but we are concerned that perhaps insurance will require being on the medication for 30 days without success before any other procedures can be performed. Of course, I am jumping to conclusions but just in case we are going to check to see if this is an issue. I desperately want to have it done right away but we may need to delay it for a couple days.
I pray that each of you will have a blessed Lords Day. The Lord has given Kyle and I the grace to endure this and He provides for us lovingly. A few have asked how I am hanging on and I have to say that I am not on my own. Some days are tough and some are not as bad, but I know that God has a plan for us and He is fully in control. Clinging to God's promises does not mean that I am a great Christian--I am a sinner that God has extended His grace to. Bible memorization is a wonderful thing that I am terrible at, but different verses run through my mind that are comforting. Right now I keep thinking about the verse, "For I know the plans that I have for you, declares the Lord, plans to prosper you and not to harm you, to give you a future and a hope. (Jeremiah 29:11) God is good, all the time.
Sunday, November 30, 2008
Wednesday, November 26, 2008
Improved? Maybe. .
I think my attitude has improved a bit even if my health has not. The spinal tap is scheduled for Tuesday around noon. I look forward to having it done and hopefully I will have some time of feeling pretty good again. I dread the actual procedure. It actually isn't all that painful--probably more uncomfortable than anthing. I just have a hard time not thinking about what they are doing to me as I feel them poking around in my spine. I would like to just shut my thoughts off.
I will readily admit that I have guessed wrong before, but it really seems that the pressure must be too high again. I am regularly taking the pain meds (which I don't do unless I have to b/c I seem to develop a tolerance to them quickly), only sleeping if I taking sleeping pills, my neck & shoulder are starting to bother me more and more again and so on. All the same things that I had before the last spinal tap. Maybe they can take out a little more fluid this time and feeling good will last longer? We will see--the other side of that is if there isn't enough fluid it causes another type of headache.
The shunt is sounding like a better option to me now, too. I guess I just had to feel bad enough a little longer before I remembered that about any procedure is fine as long as it takes away the pain.
Thanks for your encouraging words on this blog, by email and for the calls. I can't tell you how much that encourages me. On the days that I am feeling pretty down I enjoy looking at the emails and notes (even if it only says that you are reading the blog!) to remind myself that there are people out there that care and I am not truly alone! Thank you!
I will readily admit that I have guessed wrong before, but it really seems that the pressure must be too high again. I am regularly taking the pain meds (which I don't do unless I have to b/c I seem to develop a tolerance to them quickly), only sleeping if I taking sleeping pills, my neck & shoulder are starting to bother me more and more again and so on. All the same things that I had before the last spinal tap. Maybe they can take out a little more fluid this time and feeling good will last longer? We will see--the other side of that is if there isn't enough fluid it causes another type of headache.
The shunt is sounding like a better option to me now, too. I guess I just had to feel bad enough a little longer before I remembered that about any procedure is fine as long as it takes away the pain.
Thanks for your encouraging words on this blog, by email and for the calls. I can't tell you how much that encourages me. On the days that I am feeling pretty down I enjoy looking at the emails and notes (even if it only says that you are reading the blog!) to remind myself that there are people out there that care and I am not truly alone! Thank you!
Monday, November 24, 2008
It's a Monday
I have to admit that I am discouraged. For some reason I thought that either the trip to Ames would go a little better or that if it didn't I would recover fairly quickly. It seems that the headaches are stronger and I am more sensitive to noise. Sometimes it seems like it will never end. I wasn't able to attend church yesterday. Out of determination I decided to go to the office this morning which is quiet but I didn't do so well there. Two customers told me that I looked awful, kindly of course, which means that I am not fooling anyone. I am so isolated and feel pretty lonely some days. I don't remember really anything of the holidays last year beyond what my kids have told me and I had so hoped that this year would be different.
I am still working on scheduling the spinal tap for next week, hopefully Tuesday or Wednesday. It is hard to know what to hope for. Do I hope that the pressure is high so that I get a shunt in hopes that it will alleviate all or most of the symptoms? Do I really want them drilling a hole in my head, running a tube through my brain and another hole in my stomach to drain into? On the other hand, in February they did more then put in just a little hole and at that point I didn't really care. (Sorry to be so graphic!) Yes, I probably do if all this goes away. But what if it doesn't? On the other hand, what if the level is now in the normal range with the Diamox (med). I can't live like this!
It is a good that that God is good and on His throne. He knows all things and has a plan for my life and that of my family. Right now I feel like I am beyond what I can handle but He will take care of that, too.
I am still working on scheduling the spinal tap for next week, hopefully Tuesday or Wednesday. It is hard to know what to hope for. Do I hope that the pressure is high so that I get a shunt in hopes that it will alleviate all or most of the symptoms? Do I really want them drilling a hole in my head, running a tube through my brain and another hole in my stomach to drain into? On the other hand, in February they did more then put in just a little hole and at that point I didn't really care. (Sorry to be so graphic!) Yes, I probably do if all this goes away. But what if it doesn't? On the other hand, what if the level is now in the normal range with the Diamox (med). I can't live like this!
It is a good that that God is good and on His throne. He knows all things and has a plan for my life and that of my family. Right now I feel like I am beyond what I can handle but He will take care of that, too.
Friday, November 21, 2008
We're back
The concert was beautiful in Ames! I am so glad that I made it through the concert. I am feeling miserable now--the travel pretty much did me in. My biggest mistake was that I forgot my Zofran (anti-nausea med) so it created a vicious circle of feeling sick, not eating, then not being able to take my pain meds which made the circle keep getting stronger. The headaches were strong enough last night that I really didn't sleep much. For some reason if I do drift off my body will startle awake again. The trip home we finally found saltine crackers which I nibbled and kept down and gradually started the pain meds. They at least take the edge off the pain. Getting home at noon and laying in bed without moving the rest of the day was a relief. Still not feeling all that well but hoping another day or two of no movement might help. It has been a rough two days but worth it to see Tanner sing. Thank you for your prayers!
Cindy
Cindy
Wednesday, November 19, 2008
Nothing new today
We leave to Tanner's OPUS event tomorrow. Please pray that this goes well for him and that I will be able to handle the trip and event. I am concerned about the traveling and the event noise, particularly before it starts. Earplugs work well but they don't block enough when it is pretty noisy.
I just found out about two families (thru an adoption email system) that each have have a child they adopted from Guatemala, both diagnosed with leukemia. One little girl is 14 months and the other little girl is 4. Both families are Christian families and they both have blogsites. As many know, Guatemalan adoption is dear to my heart because our youngest two children were also adopted from Guatemala. Please pray for these families! If you are interested in reading a little about them, open my profile near the bottom and you will see blogsites I am following. Just click on the top two. Thank you for your prayers!
I just found out about two families (thru an adoption email system) that each have have a child they adopted from Guatemala, both diagnosed with leukemia. One little girl is 14 months and the other little girl is 4. Both families are Christian families and they both have blogsites. As many know, Guatemalan adoption is dear to my heart because our youngest two children were also adopted from Guatemala. Please pray for these families! If you are interested in reading a little about them, open my profile near the bottom and you will see blogsites I am following. Just click on the top two. Thank you for your prayers!
Tuesday, November 18, 2008
News to note
It was an interesting day. This morning the neurologist in Sioux City that I mentioned might be a slight possibility called. I wasn't sure if I was comfortable with him until determining his actual experience with Intracranial Hypertension (IH). Well, that isn't an issue. He isn't willing to take me on as a patient, again because of my medical history. I must really look like a hopeless case to these doctors!
Tonight my neurosurgeon from Milwaukee called! He has called me personally several times now since becoming his patient. It took some time to hear back but it was well worth waiting for and he was kind and gracious on the phone tonight. My first question was if he would want to continue my care. He felt that if the med works for me I really needed to have a neurologist closer to monitor things--not practical to keep driving to Milwaukee. I explained that I am just not recovering like I feel that I should. I still have headaches everyday which are not improving, my hearing is still very sensitive and I am just not coming out of it like I think I should be. He said that it may take up to a month for the med to reduce or eliminate the symptoms. He talked more about the possibility that the intracranial pressure may still be too high and not controlled by the med. That would also explain why I still have all the same symptoms but just at a reduced level. I need to have another spinal tap done the first week of December to see how things are going. He suggested that if the pressure is still too high that I will need to have a shunt. He places it in the brain and it drains into the stomach. I have to laugh--I asked him if it was a major procedure and he said, "oh, no, it is minor." So I said, "same day surgery?" He laughed at me and said, "No, not same day. You would probably be in the hospital at least a couple days." I think my definition for minor surgery and a neurosurgeons definition of minor surgery is hugely different!
To top the day off , we ended up bringing Tara in to the Ear, Nose and Throat doctor b/c she has been complaining of one ear hurting and she failed her hearing test at school this week. She had "permanent" tubes put in last November and they are both completely blocked and appear that they probably will need to be removed already. (Her previous set of "temporary" tubes only lasted a 3-4 months and they both popped out on their own.) She has to have drops in her ears for 2 weeks to see if it makes a difference and if not she will have a MINOR surgery to remove them in 2 or 3 weeks. She had her toncils and adenoids out when these tubes were put in so we are praying that if the tubes have to come out that the constant ear infections won't start again.
It was a doctor day today, but it seems like we have learned a few things. I have learned that if you see too many specialists, other doctors may be afraid of you. That brain shunts are minor procedures that sound major to me! That permanent tubes may not last so long. Finally, only by God's grace can we continue on!
Tonight my neurosurgeon from Milwaukee called! He has called me personally several times now since becoming his patient. It took some time to hear back but it was well worth waiting for and he was kind and gracious on the phone tonight. My first question was if he would want to continue my care. He felt that if the med works for me I really needed to have a neurologist closer to monitor things--not practical to keep driving to Milwaukee. I explained that I am just not recovering like I feel that I should. I still have headaches everyday which are not improving, my hearing is still very sensitive and I am just not coming out of it like I think I should be. He said that it may take up to a month for the med to reduce or eliminate the symptoms. He talked more about the possibility that the intracranial pressure may still be too high and not controlled by the med. That would also explain why I still have all the same symptoms but just at a reduced level. I need to have another spinal tap done the first week of December to see how things are going. He suggested that if the pressure is still too high that I will need to have a shunt. He places it in the brain and it drains into the stomach. I have to laugh--I asked him if it was a major procedure and he said, "oh, no, it is minor." So I said, "same day surgery?" He laughed at me and said, "No, not same day. You would probably be in the hospital at least a couple days." I think my definition for minor surgery and a neurosurgeons definition of minor surgery is hugely different!
To top the day off , we ended up bringing Tara in to the Ear, Nose and Throat doctor b/c she has been complaining of one ear hurting and she failed her hearing test at school this week. She had "permanent" tubes put in last November and they are both completely blocked and appear that they probably will need to be removed already. (Her previous set of "temporary" tubes only lasted a 3-4 months and they both popped out on their own.) She has to have drops in her ears for 2 weeks to see if it makes a difference and if not she will have a MINOR surgery to remove them in 2 or 3 weeks. She had her toncils and adenoids out when these tubes were put in so we are praying that if the tubes have to come out that the constant ear infections won't start again.
It was a doctor day today, but it seems like we have learned a few things. I have learned that if you see too many specialists, other doctors may be afraid of you. That brain shunts are minor procedures that sound major to me! That permanent tubes may not last so long. Finally, only by God's grace can we continue on!
Monday, November 17, 2008
Baby steps
I was able to attend our worship service yesterday morning. It was an extra special day--it marked our first day of being formally organized as a church. I had a hard time holding back the tears a few times as I think of where we we started and how the Lord has blessed this church, both numerically and in strengthening faith. God is so good!
I have good and not such great news about my appointment with the neurologist I mentioned earlier. Good--I have an appointment. Not so great--the first available appointment is January 13. Maybe things will be fine but if I take a turn for the worse I'm not sure what we will do. I feel rather "fragile" so just not sure how things will progress.
Today marked a small step for me. I went to the office for a little while this morning. Time seems to just be floating past me but I had decided earlier last week that today I would start going in and start doing what I can and building from there.
I have one big goal. Tanner, our oldest, qualified for Opus. I don't know all the details but I think around 3000 tried out for about 700 positions in this state honors choir and he qualified this year. We are so proud of him! I am pretty determined to go. Our plan is to drive down (3 hours) and attend the concert. We will stay overnight so I can recover a bit then drive home in the morning. Most will do this in a day but we hope that I can make the trip and the concert. Please pray for us on Thursday that I will have the strength to make it through and still be able to enjoy the concert!
We have been so blessed and sometimes I have to remind myself of how blessed we are. My sister works for State Farm and a co-worker was diagnosed with cancer 2 1/2 weeks ago. Tim had been perfectly healthy up until that time and he passed away on Sunday at age 43. He has three young children. Please pray for his family! The Lord allows each of us a cross to carry and gives us the grace that we need to to carry it. So many are struggling so much more then we are. We are blessed that everyone else in our family is healthy and doing well and that I am making progress. Thank you to each reader for your prayers and expressions of concern. They mean so much to me!
I have good and not such great news about my appointment with the neurologist I mentioned earlier. Good--I have an appointment. Not so great--the first available appointment is January 13. Maybe things will be fine but if I take a turn for the worse I'm not sure what we will do. I feel rather "fragile" so just not sure how things will progress.
Today marked a small step for me. I went to the office for a little while this morning. Time seems to just be floating past me but I had decided earlier last week that today I would start going in and start doing what I can and building from there.
I have one big goal. Tanner, our oldest, qualified for Opus. I don't know all the details but I think around 3000 tried out for about 700 positions in this state honors choir and he qualified this year. We are so proud of him! I am pretty determined to go. Our plan is to drive down (3 hours) and attend the concert. We will stay overnight so I can recover a bit then drive home in the morning. Most will do this in a day but we hope that I can make the trip and the concert. Please pray for us on Thursday that I will have the strength to make it through and still be able to enjoy the concert!
We have been so blessed and sometimes I have to remind myself of how blessed we are. My sister works for State Farm and a co-worker was diagnosed with cancer 2 1/2 weeks ago. Tim had been perfectly healthy up until that time and he passed away on Sunday at age 43. He has three young children. Please pray for his family! The Lord allows each of us a cross to carry and gives us the grace that we need to to carry it. So many are struggling so much more then we are. We are blessed that everyone else in our family is healthy and doing well and that I am making progress. Thank you to each reader for your prayers and expressions of concern. They mean so much to me!
Saturday, November 15, 2008
The weekend
I had a pretty good evening yesterday and woke up and felt pretty good this morning. I went to Tanner & Kylie's cello/violin recital with earplugs and dropped right after. After a long nap I tried for the first time to play a game with the three oldest kids tonight and they had to help me through it, and it is a kids game. But I guess a week ago I wouldn't have been able to do that. Overall, mentally I think I am coming along in the morning but start to fade after that. I would imagine that will continue improving.
I have been searching for doctors that have a focus on pseudotumor cerebri (intercranial hypertension, etc). There is a slight possibility of one in Sioux City but I am guessing he doesn't have much experience in it. His nurse is supposed to call me Monday. I have continued my internet searching each morning and last night was a little discouraged--didn't find any in Sioux Falls, Omaha, or Des Moines. Kyle told me to try Minneapolis so I looked last night and found a large neurology clinic with about 40 neurologists. There was one that listed this disease as a particular interest along with migraine, which is probably a good combination since I was treated for that for a long time. I will call them Monday to see what I can find and do a little more searching to see if there is any info about him positive or negative. If anyone that reads this sees something on Dr Jonathan Calkwood of Minneapolis clinic of Neurology please let me know!
My neurosurgeon said a week ago that 25% of his chiari patients have also been diagnosed with Intercranial Hypertension (IH). I am signing up for an IH registry and one of the questions was if I have Arnolds Chiari Malformation. Interesting! I don't remember if I wrote this before but my opening pressure with the spinal tap was 41. I have found that normal is under 20. Mine was done improperly so the 41 may not be accurate but I have wondered if that could scew the result to double the normal? Who knows, but I hope to get some answers.
By the way, did you see I added a picture? I haven't ever liked pictures of myself but especially since the headaches started. So I found this picture from shortly before it started. Maybe someday I will be able to smile again without a hint of pain. That would be awesome! :)
I have been searching for doctors that have a focus on pseudotumor cerebri (intercranial hypertension, etc). There is a slight possibility of one in Sioux City but I am guessing he doesn't have much experience in it. His nurse is supposed to call me Monday. I have continued my internet searching each morning and last night was a little discouraged--didn't find any in Sioux Falls, Omaha, or Des Moines. Kyle told me to try Minneapolis so I looked last night and found a large neurology clinic with about 40 neurologists. There was one that listed this disease as a particular interest along with migraine, which is probably a good combination since I was treated for that for a long time. I will call them Monday to see what I can find and do a little more searching to see if there is any info about him positive or negative. If anyone that reads this sees something on Dr Jonathan Calkwood of Minneapolis clinic of Neurology please let me know!
My neurosurgeon said a week ago that 25% of his chiari patients have also been diagnosed with Intercranial Hypertension (IH). I am signing up for an IH registry and one of the questions was if I have Arnolds Chiari Malformation. Interesting! I don't remember if I wrote this before but my opening pressure with the spinal tap was 41. I have found that normal is under 20. Mine was done improperly so the 41 may not be accurate but I have wondered if that could scew the result to double the normal? Who knows, but I hope to get some answers.
By the way, did you see I added a picture? I haven't ever liked pictures of myself but especially since the headaches started. So I found this picture from shortly before it started. Maybe someday I will be able to smile again without a hint of pain. That would be awesome! :)
Friday, November 14, 2008
Another week is coming to a close and I am feeling a little gloomy. Maybe it is the weather--overcast and rainy. The last couple days I haven't been feeling as well. The headaches are a little stronger again, especially in the evening with all the kids home. I told them that someday we are going to have a yelling contest and everyone can yell as loud as they can while I am yelling with them to make up for all of this. I hope that day comes.
I still haven't heard from my neurosurgeon. I am searching for a doctor that has experience with this intracranial hypertension but it is a little more challenging in a rural area to find experts in fields that are rather unusual.
Every morning I try to spend some time researching and that is a bit discouraging as well. First, is this truly what I have? I don't fit the "classic" description, which is probably why I wasn't tested before. I am not overweight, don't have whooshing sounds in my ears (but they ring pretty loudly), and have not had visual problems. What if this isn't it? Second, if this is it, it is not all that encouraging. Many respond initially to the med but it loses its effectiveness for many over time, and I have experienced that with countless drugs. Do I get a shunt in my brain? But they seem to cause problems--infections, plugging up, etc. Some use both the med & shunt and still have little relief from the symptoms long term. Little research is being done because it is relatively rare. It is called a disease with lifelong issues. I remind myself daily to take this a day at a time, though.
Relatively speaking, I am doing better. I have driven a few times this week, went to church last Sunday once (with earplugs), went out for lunch once with Kyle and can tell that I am getting stronger. I have headaches which worsen as the day goes by but they are not nearly as severe as they were before. The ringing in my ears can become pretty loud but I still hear all the noise. Two weeks ago this would have seemed like the cats meow. I need to remember that.
I still haven't heard from my neurosurgeon. I am searching for a doctor that has experience with this intracranial hypertension but it is a little more challenging in a rural area to find experts in fields that are rather unusual.
Every morning I try to spend some time researching and that is a bit discouraging as well. First, is this truly what I have? I don't fit the "classic" description, which is probably why I wasn't tested before. I am not overweight, don't have whooshing sounds in my ears (but they ring pretty loudly), and have not had visual problems. What if this isn't it? Second, if this is it, it is not all that encouraging. Many respond initially to the med but it loses its effectiveness for many over time, and I have experienced that with countless drugs. Do I get a shunt in my brain? But they seem to cause problems--infections, plugging up, etc. Some use both the med & shunt and still have little relief from the symptoms long term. Little research is being done because it is relatively rare. It is called a disease with lifelong issues. I remind myself daily to take this a day at a time, though.
Relatively speaking, I am doing better. I have driven a few times this week, went to church last Sunday once (with earplugs), went out for lunch once with Kyle and can tell that I am getting stronger. I have headaches which worsen as the day goes by but they are not nearly as severe as they were before. The ringing in my ears can become pretty loud but I still hear all the noise. Two weeks ago this would have seemed like the cats meow. I need to remember that.
Wednesday, November 12, 2008
Another day
About the same again today. I usually sleep from about 1:30 until the kids come home at 3:30, so I will be heading there shortly. I haven't heard from the doctor yet. I think he is great but sometimes not so great at communication. I guess brain surgeons have that right.
I have been thinking that it has been just about 2 1/2 years since headaches became a problem for me. There have been few days in that 2 1/2 years that I have been totally headache free, some days that were breathtakingly bad and many in various stages of tolerable. I have to laugh at myself. In looking back at a form that I completed about a year ago I indicated that I had headaches but was otherwise very healthy. I don't think to many people would look at me and say that I am very or even kind of healthy. Pride, I guess. Last year I was so embarrassed to have my sisters put me in a wheelchair and take me through Kohls to get a few things. Now I am thinking that will be a great idea if I can get strong enough to do that. How perspectives can change.
Many, many people have helped us along the way in countless ways. I know that I haven't thanked many of them, which I feel badly about. Thanks to all of you! I have to mention one other person that is amazing--my dad. A few weeks ago my mom was with Renae & her brand new baby and I had a major turn for the worse. Probably one of my worst times, I would guess. I stayed with my dad because it was quiet and near the hospital. He pampered me, helped me walk when I couldn't, got up during the night several times every night I was there to make sure that I was doing ok and took me to the hospital at all times of the day or night when I needed pain meds. He bought me Ensure b/c I was dropping weight quickly, Gatoraid because I was dehydrated, a heating pad because my neck was hurting so bad and even Pepsi because he knew that I normally love to have one a day. One night when he checked on me and found me hallucinating he stayed with me and talked me through it. Later I discovered that he then slept on the couch outside my room so that he would be sure to hear me if I started moving around or calling. A fathers love is pretty amazing but then I have pretty amazing parents.
I have been thinking that it has been just about 2 1/2 years since headaches became a problem for me. There have been few days in that 2 1/2 years that I have been totally headache free, some days that were breathtakingly bad and many in various stages of tolerable. I have to laugh at myself. In looking back at a form that I completed about a year ago I indicated that I had headaches but was otherwise very healthy. I don't think to many people would look at me and say that I am very or even kind of healthy. Pride, I guess. Last year I was so embarrassed to have my sisters put me in a wheelchair and take me through Kohls to get a few things. Now I am thinking that will be a great idea if I can get strong enough to do that. How perspectives can change.
Many, many people have helped us along the way in countless ways. I know that I haven't thanked many of them, which I feel badly about. Thanks to all of you! I have to mention one other person that is amazing--my dad. A few weeks ago my mom was with Renae & her brand new baby and I had a major turn for the worse. Probably one of my worst times, I would guess. I stayed with my dad because it was quiet and near the hospital. He pampered me, helped me walk when I couldn't, got up during the night several times every night I was there to make sure that I was doing ok and took me to the hospital at all times of the day or night when I needed pain meds. He bought me Ensure b/c I was dropping weight quickly, Gatoraid because I was dehydrated, a heating pad because my neck was hurting so bad and even Pepsi because he knew that I normally love to have one a day. One night when he checked on me and found me hallucinating he stayed with me and talked me through it. Later I discovered that he then slept on the couch outside my room so that he would be sure to hear me if I started moving around or calling. A fathers love is pretty amazing but then I have pretty amazing parents.
Tuesday, November 11, 2008
snowy day
I think I am getting a little stronger. I had a great nap today and felt pretty good after I woke up. The headaches seem to be a little bit stronger, although very tolerable. I am having some problems with nausea and it hurts to lay on the right side of my head--but that isn't new. I just thought some of these things would go away. The nausea is significantly better than it had been before. I was taking Zofran, a nausea med, pretty regularly for a while so that I could eat. Now I typically am not taking it but am just working through it a bit. Hopefully these things will pass. I am expecting a call from my dr in Milwaukee and will ask him several questions about some of these things.
The spinal fluid testing came back normal. We were expecting that, but it is still good news.
A few have asked about whether I should have had the surgery for chiari, or some have referred to it as my brain surgery. I don't have any regrets for a few reasons. First, I had several symptoms of chiari besides the headaches. Two were becoming a problem--swallowing and my fingers were totally dead from about halfway past the last knuckle on. The swallowing was preventing me from eating much meat at all and I had to drink something with every bite I took to get it down. I had a few incidents of choking that scared me. Both of those issues are resolved. Also, if I hadn't had chiari surgery I wouldn't have become a patient of Dr Heffez who ultimately determined that intracranial hypertension is probably my problem. So no regrets. I am glad that it is done. It was a difficult surgery to recover from for me, but in the long run well worth it.
The spinal fluid testing came back normal. We were expecting that, but it is still good news.
A few have asked about whether I should have had the surgery for chiari, or some have referred to it as my brain surgery. I don't have any regrets for a few reasons. First, I had several symptoms of chiari besides the headaches. Two were becoming a problem--swallowing and my fingers were totally dead from about halfway past the last knuckle on. The swallowing was preventing me from eating much meat at all and I had to drink something with every bite I took to get it down. I had a few incidents of choking that scared me. Both of those issues are resolved. Also, if I hadn't had chiari surgery I wouldn't have become a patient of Dr Heffez who ultimately determined that intracranial hypertension is probably my problem. So no regrets. I am glad that it is done. It was a difficult surgery to recover from for me, but in the long run well worth it.
Sunday, November 9, 2008
The Lord's Day
It is the Lord's Day again, and I am so blessed to have been able to go to church this morning. I remember last Sunday wondering how long it may be before I could attend. I may have pushed it a bit today, but I just walked in right before starting and walked out just before it was done. I was pretty whipped after that, but it was very well worth it. The Lord has really answered our prayers and I am so thankful to be where I am right now especially when I think of how poorly I was doing last week.
Someone asked about the side effects of the medications and if that is causing some of my problems now. Some of the side effects are headaches, dizziness, tingling hands and feet, ringing in the ears and sleepiness. Yes, some of the things I am trying to get rid of are actually being brought back by the drug, but much more tolerable. Kyle and I think that my exhaustion and memory problems are probably more related to the trauma to my brain and the need for it just to recover. If we had discovered this a few months ago it probably would have been much easier. Kyle has said many times that I looked like death and I can say that I felt like death wasn't so far away. In some of my more lucid moments I really hoped that the Lord would take me home. But, He obviously has more plans for me. I don't think that I was sleeping well, either. Kyle said that he is sleeping much better because I don't moan all night. So I think time will resolve some of these things.
I guess this has been a difficult path to follow and not one that I would have chosen. However, God is good and has been answering our prayers. We have been reminding our kids and ourselves that this is such a clear example of many people praying on my behalf and God listening and answering those prayers. Thank you for praying for me! I have struggled with not really being able to be a mom to my kids for a good part of the last 2 1/2 years, but perhaps the Lord is using this to teach and mold them more then I could have done as an active mom. God is good, all the time.
Someone asked about the side effects of the medications and if that is causing some of my problems now. Some of the side effects are headaches, dizziness, tingling hands and feet, ringing in the ears and sleepiness. Yes, some of the things I am trying to get rid of are actually being brought back by the drug, but much more tolerable. Kyle and I think that my exhaustion and memory problems are probably more related to the trauma to my brain and the need for it just to recover. If we had discovered this a few months ago it probably would have been much easier. Kyle has said many times that I looked like death and I can say that I felt like death wasn't so far away. In some of my more lucid moments I really hoped that the Lord would take me home. But, He obviously has more plans for me. I don't think that I was sleeping well, either. Kyle said that he is sleeping much better because I don't moan all night. So I think time will resolve some of these things.
I guess this has been a difficult path to follow and not one that I would have chosen. However, God is good and has been answering our prayers. We have been reminding our kids and ourselves that this is such a clear example of many people praying on my behalf and God listening and answering those prayers. Thank you for praying for me! I have struggled with not really being able to be a mom to my kids for a good part of the last 2 1/2 years, but perhaps the Lord is using this to teach and mold them more then I could have done as an active mom. God is good, all the time.
Friday, November 7, 2008
Today
I visited an eye doctor today to make sure that my optic nerve is ok. Everything looked fine. We went late morning and I slept the entire afternoon. I can't seem to sleep enough, but that will change as time goes by, I would think.
Our kids are staying home this weekend--the first time I have been home with them for a weekend for as long as I can remember. That isn't saying much, though. My memory is nearly non-existent it seems. So if you tell me something, you might want to write it down to make sure I remember. :) Hopefully it goes ok. I still seem sensitive to noise--not as bad as I was but it is still a problem. Maybe Kyle will have to take them away for a while if it gets to be to much, but we will see.
Hopefully I will start seeing some big improvements. I have been a little disappointed that I am moving forward so slowly. But Kyle reminds me that it has taken a couple years to get to the point that I am today so it may just take some time to work my way back out. Thank goodness for Kyle!
Our kids are staying home this weekend--the first time I have been home with them for a weekend for as long as I can remember. That isn't saying much, though. My memory is nearly non-existent it seems. So if you tell me something, you might want to write it down to make sure I remember. :) Hopefully it goes ok. I still seem sensitive to noise--not as bad as I was but it is still a problem. Maybe Kyle will have to take them away for a while if it gets to be to much, but we will see.
Hopefully I will start seeing some big improvements. I have been a little disappointed that I am moving forward so slowly. But Kyle reminds me that it has taken a couple years to get to the point that I am today so it may just take some time to work my way back out. Thank goodness for Kyle!
Thursday, November 6, 2008
details
I am not moving around much yet. It seems that all I am doing is sleeping. Perhaps it will take a bit to get going again.
For those that like details, it looks like what I have is called either Idiopathic Intracranial Hypertension or it is also called Pseudotumor Cerebri. It is said to cause unbearable headaches, which I can attest to, and permanent visual loss or blindness which I thankfully have not experienced. Following is a link for those really interested in knowing more about it: http://www.iih.org.uk/iih.php .
We are so thankful for Dr Dan Heffez, who saved my life. Our doctors and nurses in Rock Valley have also been fantastic. Thanks, too, to so many that have helped and encouraged us through this journey. It might take a while to figure out if the medication will work and to get on top of things, but it is a relief knowing what it most likely is and that there are treatments available. We don't always understand the Lords plan, but we know that He will use this to His glory. We are so thankful that He led us to this doctor and gave him the wisdom to find the problem!
For those that like details, it looks like what I have is called either Idiopathic Intracranial Hypertension or it is also called Pseudotumor Cerebri. It is said to cause unbearable headaches, which I can attest to, and permanent visual loss or blindness which I thankfully have not experienced. Following is a link for those really interested in knowing more about it: http://www.iih.org.uk/iih.php .
We are so thankful for Dr Dan Heffez, who saved my life. Our doctors and nurses in Rock Valley have also been fantastic. Thanks, too, to so many that have helped and encouraged us through this journey. It might take a while to figure out if the medication will work and to get on top of things, but it is a relief knowing what it most likely is and that there are treatments available. We don't always understand the Lords plan, but we know that He will use this to His glory. We are so thankful that He led us to this doctor and gave him the wisdom to find the problem!
Wednesday, November 5, 2008
still optimistic
I am still feeling much better today. After being up for about 1 1/2 hours this morning I started getting sick to my stomach and a "mild" headache so the local doc advised that I stay down for 24 hours in hopes of the puncture from the spinal tap healing. But I am so much better then I have been for quite a while! I feel weak and suspect that it is going to take some time to get on top of things again and the last couple years of drained me of most of my strength. That will come, though. It seems more and more likely that the increased cranial pressure has been the problem.
The Lords timing is good. I got news today that Mayo clinic declined seeing me. They reviewed my records and evidently decided that I was a hopeless case. It seems that they don't want there success ratio's to be affected and since I have been through all the drugs, etc., and had not found relief they weren't going to waste their time. That would have been a blow yesterday because we had decided they would be our next choice to try if the mri's didn't show anything. (We hadn't heard about the spinal tap yet).
I just started the new meds so we will pray that they will effectively control the spinal fluid pressure and perhaps life will gradually be returned to me and my family.
The Lords timing is good. I got news today that Mayo clinic declined seeing me. They reviewed my records and evidently decided that I was a hopeless case. It seems that they don't want there success ratio's to be affected and since I have been through all the drugs, etc., and had not found relief they weren't going to waste their time. That would have been a blow yesterday because we had decided they would be our next choice to try if the mri's didn't show anything. (We hadn't heard about the spinal tap yet).
I just started the new meds so we will pray that they will effectively control the spinal fluid pressure and perhaps life will gradually be returned to me and my family.
Tuesday, November 4, 2008
Extra tidbit
I was asked why the spinal tap stopped the headache. When they did the spinal tap they removed 3 vials of spinal fluid to test for abnormalities. This reduced the amount of spinal fluid around my brain and in my spinal cord, which reduced the pressure. If this is indeed the problem, too much spinal fluid was causing inter-cranial pressure and causing the headaches, etc. The medication prescribed will decrease the production of spinal fluid. Since we don't have a true reading the question will be if the pressure is too high for the medication to control. It sounds likely that it will control it but a shunt was mentioned if it can't be controlled.
I am still feeling good--I am almost giddy! :)
I am still feeling good--I am almost giddy! :)
Cautiously Optimistic!
We may have an answer to prayer!
I had a terrible night last night. The pain had increased a lot and even though I took a pain pill and sleeping pill, I slept little because of the pain intensity. I woke up this morning in a lot of pain as well. We called the doctor first thing for an appointment to discuss our options and do the blood draw. He also gave me a mega dose of a pain med by shot.
We were able to do the spinal tap this afternoon already. It was uncomfortable but not so bad. About an hour after the procedure was done my headache disappeared! Yes--it is gone! The pain is gone, the pressure is gone and even the ringing in my ears has stopped.
We left a message for the surgeon with the pressure that was measured. Unfortunately the anesthesiologist did it incorrectly. I was supposed to lay down and she had me sit up which gives an inaccurate reading. But, the reading that I had was substantially higher then normal according to the surgeon! He is optimistic. He is putting me on the medication to control the production of spinal fluid and I have to call him in 1 week. There is a possibility that I will have to repeat the test to get the accurate reading. If this is indeed the problem, the medication should control it or worse case would be needing a shunt put in.
I am waiting for the blood test result and they are testing the spinal fluid for abnormalities as well.
Please pray that this is the problem and thank the Lord for answering our prayers! We are so hopeful! :)
I had a terrible night last night. The pain had increased a lot and even though I took a pain pill and sleeping pill, I slept little because of the pain intensity. I woke up this morning in a lot of pain as well. We called the doctor first thing for an appointment to discuss our options and do the blood draw. He also gave me a mega dose of a pain med by shot.
We were able to do the spinal tap this afternoon already. It was uncomfortable but not so bad. About an hour after the procedure was done my headache disappeared! Yes--it is gone! The pain is gone, the pressure is gone and even the ringing in my ears has stopped.
We left a message for the surgeon with the pressure that was measured. Unfortunately the anesthesiologist did it incorrectly. I was supposed to lay down and she had me sit up which gives an inaccurate reading. But, the reading that I had was substantially higher then normal according to the surgeon! He is optimistic. He is putting me on the medication to control the production of spinal fluid and I have to call him in 1 week. There is a possibility that I will have to repeat the test to get the accurate reading. If this is indeed the problem, the medication should control it or worse case would be needing a shunt put in.
I am waiting for the blood test result and they are testing the spinal fluid for abnormalities as well.
Please pray that this is the problem and thank the Lord for answering our prayers! We are so hopeful! :)
Monday, November 3, 2008
Bad news
The doctor called at 5:30 today and he can't find anything that is causing the neurological abnormalities--and my headaches. He asked me to take a blood test to check the level of a certain vitamin--I have had many and so far nothing has shown up but we will do it again. Also wants a spinal tap done to check the pressure of the spinal fluid. We will pursue that as well.
The headache has increased in intensity today.
The headache has increased in intensity today.
Sunday, November 2, 2008
A little stronger
The headache increased in intensity again later yesterday and has been stronger again today. I am thankful for the pain med that is still working to take off the worst.
Our youngest two children stayed at Karleen's house this weekend and Kyle will pick them up after church tonight. I really miss them but it does help a lot with keeping the noise down and therefore the headache somewhat better controlled. The same things make it worse quickly--noise and movement. Riley, 6 and Tara, 5 naturally are full of noise and movement which means they are healthy and happy but it is challenging for me.
The older two went last weekend, too, but stayed this weekend b/c of a piano recital and orchestra practice. Thanks, Karleen! Renae did some major shopping for me for winter things for the kids this week. Renae has been my professional shopper the last couple of years and has dressed the kids well. Thanks, Renae!
Today is the Sabbath and I found comfort today in II Corinthians 1. I really miss being able to go to church but I know God has a plan. I do believe despite the ups and downs that my faith has been strengthened through these challenges that we have had the last couple years.
Our youngest two children stayed at Karleen's house this weekend and Kyle will pick them up after church tonight. I really miss them but it does help a lot with keeping the noise down and therefore the headache somewhat better controlled. The same things make it worse quickly--noise and movement. Riley, 6 and Tara, 5 naturally are full of noise and movement which means they are healthy and happy but it is challenging for me.
The older two went last weekend, too, but stayed this weekend b/c of a piano recital and orchestra practice. Thanks, Karleen! Renae did some major shopping for me for winter things for the kids this week. Renae has been my professional shopper the last couple of years and has dressed the kids well. Thanks, Renae!
Today is the Sabbath and I found comfort today in II Corinthians 1. I really miss being able to go to church but I know God has a plan. I do believe despite the ups and downs that my faith has been strengthened through these challenges that we have had the last couple years.
Saturday, November 1, 2008
Better days
Yesterday and today have been a little milder. I even skipped pain meds this morning.
I am thankful for:
-Loving husband that has taken care of me through some tough times
-That I am the one with the health issues and not my kids
-Loving family that have helped so much--shopping, meals & treats, childcare, prayers, encouragement, runs to the hospital for meds, and the list goes on
-Thankful for my friends and church family that pray, encourage me, bring meals & treats, and the list goes on
-Milder days
-Our ladies at the office diligently taking care of things--and doing a great job!
-Mild weather :)
-Feeling well enough to go to the office for lunch yesterday-great to get out!
-Most of all, God's grace carrying our family through this
I know I am forgetting many things but thanks to all for everything!
I am thankful for:
-Loving husband that has taken care of me through some tough times
-That I am the one with the health issues and not my kids
-Loving family that have helped so much--shopping, meals & treats, childcare, prayers, encouragement, runs to the hospital for meds, and the list goes on
-Thankful for my friends and church family that pray, encourage me, bring meals & treats, and the list goes on
-Milder days
-Our ladies at the office diligently taking care of things--and doing a great job!
-Mild weather :)
-Feeling well enough to go to the office for lunch yesterday-great to get out!
-Most of all, God's grace carrying our family through this
I know I am forgetting many things but thanks to all for everything!
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