"They that wait upon the Lord shall renew their strength. They shall mount up with wings as eagles! They shall run and not be weary, they shall walk and not faint."
As a child I remember singing this verse and it continues running through my mind today as everything has gotten quite overwhelming.
As of this evening, I am going to be flying to Baltimore with my mom on Tuesday, December 6. I have the shunt patency test on Wednesday and then see the neurosurgeon on Thursday. The results will determine the next steps. There is a possibility that they would put an anti-siphoning device in on Friday. They still seem to think that that is the logical next step but we will see what the test result shows. The surgery, if it would occur, would probably be Friday morning. I would stay one night in the hospital and be released on Saturday. We have booked the tickets to fly back on Monday, December 12.
I struggle with what feels like chasing after the wind. Do I continue trying to improve my headache? I am not as bad as I have been at times, but really not very good either. How long and how many times do I have test after test and the emotional, financial and time that it all continues to take? It is hard to know when to call it enough. At this point we have decided that since this anti-siphoning device is something JH has talked about since the first time that I was there that we would do the testing and see if they decide it is necessary. Then we will see what happens. One day at a time. The Lord does have a plan for our family and I need to continue trusting in that.
Tuesday, November 29, 2011
Sunday, November 27, 2011
Sunday
I am rejoicing that I was able to go to church both times today. It isn't so easy but I try to walk in right before it starts and walk out quickly afterwards, which I really don't like doing! I would much rather visit! Earplugs make it tolerable but my head hurts more by the time I get home. Definitely worth it, though.
(By the way I am using abbreviations for places for our privacy so I may delete or edit comments that list names of local places)
I haven't gotten many answers. Johns Hopkins did call me Wednesday and said that they would like me to come out there for the shunt patency test. I figured out (not through the ns) that SC does do shunt patency tests so I am pleading with the ns to order the test here for me, but it is not very likely. It seems like with neurosurgeons, if it isn't their idea, it isn't a good idea, but perhaps I am becoming a little cynical. So if the SC neurosurgeon doesn't order the test, I told JH to schedule it on a first available basis. I really don't know what to expect after that. I haven't heard back from JH since the conversation Wednesday and I haven't heard from SC since then, either.
My head is doing a little better than it was the beginning of the week, but I still have that slowed processing that makes it difficult to function and definitely a painful head. The fogginess is maybe the most frustrating thing, but yet the pain isn't all that great either. I so long for normalcy! In all honesty, normal life is not overrated by me! A lot of things are coming up with the kids that I would like to attend but it will be a challenge in the state I am in right now. I am happy that I made it to the most important things already, though, and will just take the rest a day at a time.
Thanksgiving went okay for me. Thursday was the turning point after the spinal tap, which was sooner than it had been the few previous times. I was able to go to Renae's house for the Thanksgiving meal at noon. I then went home and layed down for the afternoon and went back a bit before supper and enjoyed the meal with them and some visiting. I was pretty miserable by that night, but I was thankful to be able to participate as much as I did. If it had been one day earlier, I wouldn't have been there at all. My back is still pretty sore from the spinal tap but that is the least of my concerns at this point. I am still pretty determined that I not have another spinal tap unless I am desperate. My non-medical opinion is that it is gradually damaging the nerves in that area because the tap is done in the same spot each time.
I do wonder sometimes if there is more going on than the pseudotumor cerebri. Is it still the effects of the Chiari that are causing the headaches or is there another issue? I pray that we can find more answers.
(By the way I am using abbreviations for places for our privacy so I may delete or edit comments that list names of local places)
I haven't gotten many answers. Johns Hopkins did call me Wednesday and said that they would like me to come out there for the shunt patency test. I figured out (not through the ns) that SC does do shunt patency tests so I am pleading with the ns to order the test here for me, but it is not very likely. It seems like with neurosurgeons, if it isn't their idea, it isn't a good idea, but perhaps I am becoming a little cynical. So if the SC neurosurgeon doesn't order the test, I told JH to schedule it on a first available basis. I really don't know what to expect after that. I haven't heard back from JH since the conversation Wednesday and I haven't heard from SC since then, either.
My head is doing a little better than it was the beginning of the week, but I still have that slowed processing that makes it difficult to function and definitely a painful head. The fogginess is maybe the most frustrating thing, but yet the pain isn't all that great either. I so long for normalcy! In all honesty, normal life is not overrated by me! A lot of things are coming up with the kids that I would like to attend but it will be a challenge in the state I am in right now. I am happy that I made it to the most important things already, though, and will just take the rest a day at a time.
Thanksgiving went okay for me. Thursday was the turning point after the spinal tap, which was sooner than it had been the few previous times. I was able to go to Renae's house for the Thanksgiving meal at noon. I then went home and layed down for the afternoon and went back a bit before supper and enjoyed the meal with them and some visiting. I was pretty miserable by that night, but I was thankful to be able to participate as much as I did. If it had been one day earlier, I wouldn't have been there at all. My back is still pretty sore from the spinal tap but that is the least of my concerns at this point. I am still pretty determined that I not have another spinal tap unless I am desperate. My non-medical opinion is that it is gradually damaging the nerves in that area because the tap is done in the same spot each time.
I do wonder sometimes if there is more going on than the pseudotumor cerebri. Is it still the effects of the Chiari that are causing the headaches or is there another issue? I pray that we can find more answers.
Wednesday, November 23, 2011
Wednesday
I had the spinal tap, also known as lumbar puncture, yesterday. It did not go so well in a few ways. First of all, the number is not number that decisively tells us what to do next. I called both ns in SC and JH and had hoped they would call back yesterday but now suspect I may not hear until next Tuesday.
The procedure was more painful than usual--it just didn't go so smoothly. They hit a couple of nerves hard enough that I am still having pain down my leg, etc., because of it. Finally, they had agreed to do the blood patch yesterday. I warned them that I have lousy veins, but doctors and nurses just don't believe me until they try it themselves. Well, the plan was to draw the blood once the needle was in my back and bring the blood directly from my vein to inject into the needle in my spinal cord. The problem was that they had a limited time to do that because each minute the needle is in my back the higher the risk of infection. They couldn't draw the blood. It was actually an anesthesiologist drawing and he was a bit frustrated that he couldn't get the blood out of my arms. They actually took my shoes off and were going to try to draw from my feet but I finally had had enough and they felt that they had taken to long, so they gave up. No blood patch. So we will see how recovery goes.
It was an emotional trip home. I am not a doctor so I don't know what the answers will be but I know enough to know that there aren't going to be clear answers. I have also decided that I am not going to do another spinal tap unless I have exhausted every other option. My back aches all the time anyway from the previous repeated taps and this time my back is very sore. I just don't think I can do it again.
The procedure was more painful than usual--it just didn't go so smoothly. They hit a couple of nerves hard enough that I am still having pain down my leg, etc., because of it. Finally, they had agreed to do the blood patch yesterday. I warned them that I have lousy veins, but doctors and nurses just don't believe me until they try it themselves. Well, the plan was to draw the blood once the needle was in my back and bring the blood directly from my vein to inject into the needle in my spinal cord. The problem was that they had a limited time to do that because each minute the needle is in my back the higher the risk of infection. They couldn't draw the blood. It was actually an anesthesiologist drawing and he was a bit frustrated that he couldn't get the blood out of my arms. They actually took my shoes off and were going to try to draw from my feet but I finally had had enough and they felt that they had taken to long, so they gave up. No blood patch. So we will see how recovery goes.
It was an emotional trip home. I am not a doctor so I don't know what the answers will be but I know enough to know that there aren't going to be clear answers. I have also decided that I am not going to do another spinal tap unless I have exhausted every other option. My back aches all the time anyway from the previous repeated taps and this time my back is very sore. I just don't think I can do it again.
Saturday, November 19, 2011
Saturday
Tami is home! She came home yesterday afternoon. She continues to have quite a bit of pain but is controlling it somewhat well with a few pain medications and a nausea medication. She has a ways to go, but the worst is behind her.
I am holding my own. I don't think I was as bad as I was when this most recent downturn began, but not so great, either. My goal has been that if I could go to the concert Tanner performed in on Tuesday and the Honor's Orchestra that Kylie performed in on Friday that I would be content. They have several more concerts and performances they are involved in but these two were my priority. Thankfully, I made it to both! Some challenges of course, but I was there and that is what counts.
Hopefully the spinal tap will give us some answers on Tuesday, but I am a little skeptical. It seems that this is a bit of a mystery and I guess I would be surprised if we had a definitive answer that provided a long lasting and effective solution. Perhaps it has just been to long, to many tests and many disapointments. I am not giving up, but maybe it is a form of self-preservation to not count on a cure.
Day by day and moment by moment we walk this journey. The Lord has been gracious in providing what we need when we need it.
I am holding my own. I don't think I was as bad as I was when this most recent downturn began, but not so great, either. My goal has been that if I could go to the concert Tanner performed in on Tuesday and the Honor's Orchestra that Kylie performed in on Friday that I would be content. They have several more concerts and performances they are involved in but these two were my priority. Thankfully, I made it to both! Some challenges of course, but I was there and that is what counts.
Hopefully the spinal tap will give us some answers on Tuesday, but I am a little skeptical. It seems that this is a bit of a mystery and I guess I would be surprised if we had a definitive answer that provided a long lasting and effective solution. Perhaps it has just been to long, to many tests and many disapointments. I am not giving up, but maybe it is a form of self-preservation to not count on a cure.
Day by day and moment by moment we walk this journey. The Lord has been gracious in providing what we need when we need it.
Thursday, November 17, 2011
Thursday
Just a quick update on my sister, Tami. She has had challenges with pain control and nausea today so she is staying in the hospital again tonight. It is the very best place for her right now, but I had really hoped that she would get through this surgery a little easier!
Wednesday, November 16, 2011
Wednesday
Tami had her surgery this morning. We are thankful that the surgery went well. She had a lot of pain this morning, but a few hours ago I heard that she is resting this afternoon and the pain is more controlled. She is going to need so much help for the next several weeks! She won't be able to lift her baby for 6 weeks, which is pretty tough since she is only 5 months old! At this point if anyone would like to help, maybe drop Renae or me an and email or call us. I think she is taken care of this week and then it will be a day by day thing for a while.
I have been up and down quite a bit this week, but overall just not very good. That being said, I have been much worse in the past, so this is doable. We really struggled with the best path to take, and finally determined that we would put the ball back in JH court. The doctors discussed it and decided that because of the distance I could just do the spinal tap (lumbar puncture) here first and if the pressure is low we will know that I need the anti-siphoning device and that can be done by the local neurosurgeon. If the pressure is "normal" or higher, I will probably need to fly out to JH. I have the tap scheduled for next Tuesday afternoon. After some persuasion and probably swayed because of the holiday, the doctor has agreed to do the blood patch right after the spinal tap. This is a good thing! I have been taking about a week or so to have my spinal cord "seal up" and leakage causes my head to hurt a lot. The blood patch hopefully will take care of that. Normally they won't do the blood patch for a couple days and then I always convince myself that just one more day will take care of it. Hopefully it goes a little better this time!
So there is a lot going on in my family! It hurts me to see my little sister suffer, but I am very thankful the surgery is completed. We pray that the cancer was contained and should find out about that in a few days. The Lord has been faithful and will carry her through. He has continued to carry me and my family as well. This hasn't been an easy time but I continue to move forward and pray for courage and strength. The Lord chastens those He loves, and I think we are feeling well loved!
By the way, my dad seems to be doing better. He still has periods of time that he fights the dizziness, but he isn't having the episodes where it is totally disabling, for which we are thankful. Tanner's foot is healing. Because he was having problems with the strength in his foot, we finally just had him start physical therapy. They are working on it and gave him exercises which seem to be helping. So we are thankful for that, too!
I have been up and down quite a bit this week, but overall just not very good. That being said, I have been much worse in the past, so this is doable. We really struggled with the best path to take, and finally determined that we would put the ball back in JH court. The doctors discussed it and decided that because of the distance I could just do the spinal tap (lumbar puncture) here first and if the pressure is low we will know that I need the anti-siphoning device and that can be done by the local neurosurgeon. If the pressure is "normal" or higher, I will probably need to fly out to JH. I have the tap scheduled for next Tuesday afternoon. After some persuasion and probably swayed because of the holiday, the doctor has agreed to do the blood patch right after the spinal tap. This is a good thing! I have been taking about a week or so to have my spinal cord "seal up" and leakage causes my head to hurt a lot. The blood patch hopefully will take care of that. Normally they won't do the blood patch for a couple days and then I always convince myself that just one more day will take care of it. Hopefully it goes a little better this time!
So there is a lot going on in my family! It hurts me to see my little sister suffer, but I am very thankful the surgery is completed. We pray that the cancer was contained and should find out about that in a few days. The Lord has been faithful and will carry her through. He has continued to carry me and my family as well. This hasn't been an easy time but I continue to move forward and pray for courage and strength. The Lord chastens those He loves, and I think we are feeling well loved!
By the way, my dad seems to be doing better. He still has periods of time that he fights the dizziness, but he isn't having the episodes where it is totally disabling, for which we are thankful. Tanner's foot is healing. Because he was having problems with the strength in his foot, we finally just had him start physical therapy. They are working on it and gave him exercises which seem to be helping. So we are thankful for that, too!
Saturday, November 12, 2011
Saturday
Well, I felt better yesterday morning, but not as good as the day progressed. I would say that it wasn't as intense as it has been this week but not so great last night or today. It is more evident to others as well as I seem to have developed "the look" of a headache.
We have some decisions to make. The local ns would like to do a spinal tap and make a decision from there. The negative is that I have had many spinal taps and I don't think that it is going to provide an answer. There is also some risk to continue doing repeated spinal taps. The positive is that it is local so I may be able to get something done here if the ns here felt that it is warranted.
The second choice would be to fly to Johns Hopkins in Baltimore. The doctors there have discussed my case and they would like to do a shunt patency test to determine what is going on. This test is not as invasive. The doctor injects a dye into the tube right before the shunt pump in my head and then they follow the speed that the dye passes through the shunt and into my abdomen. It sounds like that test is not available here since the nurse told me that she had never heard of this. Of course the negative is the distance and trying to figure out how to do the traveling and take care of all the kids and their directions. So we are praying over this now!
We have some decisions to make. The local ns would like to do a spinal tap and make a decision from there. The negative is that I have had many spinal taps and I don't think that it is going to provide an answer. There is also some risk to continue doing repeated spinal taps. The positive is that it is local so I may be able to get something done here if the ns here felt that it is warranted.
The second choice would be to fly to Johns Hopkins in Baltimore. The doctors there have discussed my case and they would like to do a shunt patency test to determine what is going on. This test is not as invasive. The doctor injects a dye into the tube right before the shunt pump in my head and then they follow the speed that the dye passes through the shunt and into my abdomen. It sounds like that test is not available here since the nurse told me that she had never heard of this. Of course the negative is the distance and trying to figure out how to do the traveling and take care of all the kids and their directions. So we are praying over this now!
Friday, November 11, 2011
Friday
Prayers were answered! I am not better, but I am doing better than I have since Sunday which is a relief! We'll see how the day progresses.
Thursday, November 10, 2011
Thursday
It has been more of the same here. My head has continued to be not very good. I have been trying to push through each day so I have been going to work for a little shorter time then I was. Since I woke up one morning with it significantly worse, I continue to hope that I may wake up one morning and have it much better! Late this afternoon I gave in and had Kyle give me a shot to try to get this under control a bit and that has helped.
At this point I am waiting for a call back from Baltimore and another from the local ns. I had hoped I would hear from both of them today but that didn't happen. It seems fairly common to wait more than a day for a call back from a neurosurgeon's office, though. I think between their surgery schedules, etc., it isn't always so quick. So it is hard to say what the future holds once again.
At this point I am waiting for a call back from Baltimore and another from the local ns. I had hoped I would hear from both of them today but that didn't happen. It seems fairly common to wait more than a day for a call back from a neurosurgeon's office, though. I think between their surgery schedules, etc., it isn't always so quick. So it is hard to say what the future holds once again.
Tuesday, November 8, 2011
Tuesday
We have a volunteer to take Tara to her tutoring. Thank you, Cipa!
I had so hoped that perhaps this morning I would wake up doing better but that was not to be. I'm not sure why things changed Sunday when I woke up. The headache is stronger and enough that it is making it harder to function as well again.
Today I went to physical therapy hoping to get a little bit of the edge off of the headache. The pt was describing to an intern my challenges as I seem to be one of those unique cases that medical people like to talk about. Since he has been seeing me for a while he has gotten to know without asking how I am doing. Sometimes I have a hard time judging the strength of the headache but I thought it was interesting that he said that if he scored me on "well being" (like the pain scale) and 10 was the worst and 1 the best that my very best he has seen me was a 3 and I had been around a 5 for a while now but he would say that I am a 7-8 right now. Interesting. I know that I have had much more severe headaches than where I am at now, but it really isn't very good, either. I appreciated his perspective.
I had so hoped that perhaps this morning I would wake up doing better but that was not to be. I'm not sure why things changed Sunday when I woke up. The headache is stronger and enough that it is making it harder to function as well again.
Today I went to physical therapy hoping to get a little bit of the edge off of the headache. The pt was describing to an intern my challenges as I seem to be one of those unique cases that medical people like to talk about. Since he has been seeing me for a while he has gotten to know without asking how I am doing. Sometimes I have a hard time judging the strength of the headache but I thought it was interesting that he said that if he scored me on "well being" (like the pain scale) and 10 was the worst and 1 the best that my very best he has seen me was a 3 and I had been around a 5 for a while now but he would say that I am a 7-8 right now. Interesting. I know that I have had much more severe headaches than where I am at now, but it really isn't very good, either. I appreciated his perspective.
Sunday, November 6, 2011
Sunday
We are running stuck with one of Tara's tutoring times and wondering if anyone would be interested in taking her that day. We are looking at Tuesday, November 15. She has tutoring from 6-7:00. If you might be interested, please just drop me an email or give me a call and I can give more details.
For whatever reason, today has not been as good of a day. Perhaps yesterday was a little to busy or maybe the barometer is just bouncing a little to much. I decided to stay home from church this evening because my head is just hurting more than I can handle for church.
We have decided to talk to the doctor and perhaps move ahead with having another spinal tap. It is definitely a procedure that I prefer to avoid, but probably worth find out where I am. I am regretting that I didn't have the test at JH this spring that monitored my pressure for 5 days. Not a comfortable test and some risk involved, but I think we would have a better idea what is happening with the results of that test. I am going to ask the ns here if that is something that he would do and I might call JH to see what their thoughts are at this point.
I can live this way--maybe not as well if all days were like today--but having a taste this summer of feeling so much better gives me a stronger desire to see if there is something that can be done to get me back to "better." So I guess I will see what the doctor(s) have to say in the next few days.
Please pray that the Lord continues to guide our steps.
For whatever reason, today has not been as good of a day. Perhaps yesterday was a little to busy or maybe the barometer is just bouncing a little to much. I decided to stay home from church this evening because my head is just hurting more than I can handle for church.
We have decided to talk to the doctor and perhaps move ahead with having another spinal tap. It is definitely a procedure that I prefer to avoid, but probably worth find out where I am. I am regretting that I didn't have the test at JH this spring that monitored my pressure for 5 days. Not a comfortable test and some risk involved, but I think we would have a better idea what is happening with the results of that test. I am going to ask the ns here if that is something that he would do and I might call JH to see what their thoughts are at this point.
I can live this way--maybe not as well if all days were like today--but having a taste this summer of feeling so much better gives me a stronger desire to see if there is something that can be done to get me back to "better." So I guess I will see what the doctor(s) have to say in the next few days.
Please pray that the Lord continues to guide our steps.
Friday, November 4, 2011
Friday
I have been struggling to get on to this blogsite this week, so I haven't posted.
I have been feeling better since the adjustment. I'm not "great" but I would say that I am good, for me. I thought that perhaps my strength would improve and now it seems like things are about they way they have been for a while. I haven't called the ns yet because I am not exactly sure what to say. Do I continue striving to get my head back to normal or do I find contentment with where I am? So I plan to mull this over the weekend yet and call him on Monday.
Someone asked me this week if I have found peace in where I am at. I think that answer varies! For the most part, though, I would say that I am at peace with it. It seems likely that this will be a lifelong problem. Yes, there are days that are a bigger struggle than others but I can't say that I am angry or bitter. Maybe sad about some things would be an apt description but I have accepted where I am and have really learned to live day by day. That doesn't mean that I don't ever think about the future, but I generally don't stew on it. God has been very merciful to me.
I have been feeling better since the adjustment. I'm not "great" but I would say that I am good, for me. I thought that perhaps my strength would improve and now it seems like things are about they way they have been for a while. I haven't called the ns yet because I am not exactly sure what to say. Do I continue striving to get my head back to normal or do I find contentment with where I am? So I plan to mull this over the weekend yet and call him on Monday.
Someone asked me this week if I have found peace in where I am at. I think that answer varies! For the most part, though, I would say that I am at peace with it. It seems likely that this will be a lifelong problem. Yes, there are days that are a bigger struggle than others but I can't say that I am angry or bitter. Maybe sad about some things would be an apt description but I have accepted where I am and have really learned to live day by day. That doesn't mean that I don't ever think about the future, but I generally don't stew on it. God has been very merciful to me.
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