We felt that Thursday was a successful day at the neurosurgeon and truly feel blessed that He led this neurosurgeon to work with me.
He was willing to adjust the shunt for me. It is adjusted back to the setting that I was at this summer and felt so well with. Both the neurosurgeon as well as Kyle and I are not sure why my head was so good this summer and then deteriorated after the most recent surgery. Many unknowns in this journey and it seems as if this is a trial and error disease with no clear answers. It took a few days for me to settle into this new setting again. I just feel "out of sorts" for a few days after an adjustment and this wasn't an exception. But my head is feeling better and I am thankful for that! It isn't pefect and I am still really struggling with the sensitivities, particularly to noise, but I suspect that this is going to be a lifelong battle.
The plan right now is to wait a week to see how this shunt adjustment feels. If I am still struggling, the ns would like me to have a spinal tap just to see what my pressure is doing. Based on the result of that, we might look at a small surgery to add an anti-siphoning device. Johns Hopkins had been talking about this as well, so we will see how this works out. The positive is it may help if I am overdraining while I am up. Evidently it drains more while I am up and drains less while I lay down, which may explain why I feel better after laying down for a while. The negative is that it causes the shunts to malfunction more quickly. Or there are a few other things that he thought about checking again depending on the results. So we will see what the week brings and pray that the Lord guides our steps!
Sunday, October 30, 2011
Wednesday, October 26, 2011
Wednesday
I seem to be going up and down like a yo-yo with my head, which matches what the barometer seems to be doing lately. Tomorrow I will see the local neurosurgeon and I am hoping to have an adjustment. So hoping that I can feel a little better! I am still functioning and moving forward, but it seems like it is getting a little harder again. And I am oh, so tired! My energy level is just zip.
The good news? Saturday our older kids were gone for the day at All-State tryouts so I made the decision to go with Kyle to bring Tara to her tutoring. Riley came along, too. We had a special time after tutoring going out for a pizza lunch and then we went to a movie together!!! Huge for me and the first movie I have seen in the theater for a very long time! We weren't sure how it would go, but I took some medication, put in my earplugs and we went for it. I did pretty well! I had to close my eyes during maybe 1/3 of the movie when there was a little more action. We saw Dolphin Tale, which was a fantastic movie for kids and not a lot of action which made it more tolerable for me. So that was a pretty big accomplishment and a special time that I could spend with our younger two kids. I was lamenting the lack of special times particularly with them and now had the opportunity to do something so I am so thankful for that!
I have been thinking lately, though, that I am learning to be thankful that the Lord doesn't always answer our prayers with a yes. Life is not so easy with my head these days again, but I am once again thankful to be on this earth yet being a mom to my kids and a wife. So many days and weeks and months I have prayed for the Lord to take me to my eternal home and for now I am thankful that I am still here. So I am grateful that the Lord's plan is better than my plan.
The good news? Saturday our older kids were gone for the day at All-State tryouts so I made the decision to go with Kyle to bring Tara to her tutoring. Riley came along, too. We had a special time after tutoring going out for a pizza lunch and then we went to a movie together!!! Huge for me and the first movie I have seen in the theater for a very long time! We weren't sure how it would go, but I took some medication, put in my earplugs and we went for it. I did pretty well! I had to close my eyes during maybe 1/3 of the movie when there was a little more action. We saw Dolphin Tale, which was a fantastic movie for kids and not a lot of action which made it more tolerable for me. So that was a pretty big accomplishment and a special time that I could spend with our younger two kids. I was lamenting the lack of special times particularly with them and now had the opportunity to do something so I am so thankful for that!
I have been thinking lately, though, that I am learning to be thankful that the Lord doesn't always answer our prayers with a yes. Life is not so easy with my head these days again, but I am once again thankful to be on this earth yet being a mom to my kids and a wife. So many days and weeks and months I have prayed for the Lord to take me to my eternal home and for now I am thankful that I am still here. So I am grateful that the Lord's plan is better than my plan.
Friday, October 21, 2011
Friday
I haven't written much because things aren't changing much. My abdomen continues to be tender but I have decided to wait another week or two before deciding if I should pursue it further or assume that it will be okay. My head has been somewhat okay. Although the barometer seems to be fairly steady this week, my head has just not been feeling so great. I am also really struggling with weakness and lack of strength. Next week I will be having my shunt adjusted and I am praying that the change may give my head some relief and perhaps allow my strength to build. We continue to take things just a day at a time and pray for strength to get through each day.
Last Saturday we sold our camper. It was an incredibly sad day for me. This summer we didn't get out once primarily because of my health issues. I am particularly sad that our youngest two won't have the camping memories and experiences that our older two have had. Life isn't fair and I remind all of our kids of that regularly and I am reminding myself of that as well. I hope that I can get well enough that my younger two will have some memories of spending time with mom, even if it is the smallest things. Although that really isn't happening now much at all, I am grateful that they have a mom yet and maybe just being there makes up for the many things that a normal mom would do.
Last Saturday we sold our camper. It was an incredibly sad day for me. This summer we didn't get out once primarily because of my health issues. I am particularly sad that our youngest two won't have the camping memories and experiences that our older two have had. Life isn't fair and I remind all of our kids of that regularly and I am reminding myself of that as well. I hope that I can get well enough that my younger two will have some memories of spending time with mom, even if it is the smallest things. Although that really isn't happening now much at all, I am grateful that they have a mom yet and maybe just being there makes up for the many things that a normal mom would do.
Monday, October 17, 2011
Monday
. . . and maybe not. I saw the general surgeon today and he didn't feel what the local doctor and my sister felt on my abdomen. So we will give it a couple weeks and see how things are going. No surgery would be a wondeful thing! However, if I do need to have surgery we would really like to get it done quickly since so much is happening the last couple months of the year. So we will see where the Lord leads.
Saturday, October 15, 2011
Saturday. . . and surgery again?
I have been having some abdominal pain and started noticing it more the middle of this week. After some procrastination and more tenderness on Friday, I had my sister Renae (who is/was a nurse) check out my incision. The scar on my abdomin is about 12 inches long, but the most recent surgery reopened about 8 inches of it. Just above where the recent surgery was done the scar extends about 3 inches and those few inches have been opened multiple times. Just where the new scar begins adjoining that 3 inches I have a firm spot that extends to the left a little bit. It is probably as wide as three of my fingers going up and down the incision and as wide my my pointer finger from tip to first knuckle. Anyway, she thought right away that it felt like a hernia and told me to get to a doctor. I then went to a local doctor and had him check it out. He said right away after looking and probing that it is probably an incisional hernia.
I then called the general surgeon that did the most recent surgery and they scheduled an apointment for Monday morning. It sounds likely that I will need surgery to repair it sometime. A minor surgery, but another surgery. I knew that something was wrong with it and it has become more apparent as time goes by. My fear has been that I would have another bowel obstruction if the intestine had attached to the incision or something. However, the doctor didn't think that the bowel is involved, which was a relief to me. So I will see what the general surgeon has to say, but it is looking like another surgery is in my future.
Prior to seeing this doctor, I did make an appointment which is in about two weeks to have my shunt adjusted again at the local neurosurgeon. I have been functioning okay but still don't feel so great. At this point it seems that the pressure is slightly low so my hope is that he will adjust the shunt just one notch closed. I really wonder if I can get back to where I was this summer when I was headache free, but it doesn't seem like it will happen this fall with the barometric pressure bouncing like a ball. I am really struggling with exhaustion, too. Perhaps if I am overdraining and that is changed I will begin increasing in endurance. But another sugery isn't going to help that again. :(
I then called the general surgeon that did the most recent surgery and they scheduled an apointment for Monday morning. It sounds likely that I will need surgery to repair it sometime. A minor surgery, but another surgery. I knew that something was wrong with it and it has become more apparent as time goes by. My fear has been that I would have another bowel obstruction if the intestine had attached to the incision or something. However, the doctor didn't think that the bowel is involved, which was a relief to me. So I will see what the general surgeon has to say, but it is looking like another surgery is in my future.
Prior to seeing this doctor, I did make an appointment which is in about two weeks to have my shunt adjusted again at the local neurosurgeon. I have been functioning okay but still don't feel so great. At this point it seems that the pressure is slightly low so my hope is that he will adjust the shunt just one notch closed. I really wonder if I can get back to where I was this summer when I was headache free, but it doesn't seem like it will happen this fall with the barometric pressure bouncing like a ball. I am really struggling with exhaustion, too. Perhaps if I am overdraining and that is changed I will begin increasing in endurance. But another sugery isn't going to help that again. :(
Thursday, October 13, 2011
Thursday
I continue to do about the same. I've have some days that are relatively good (for me) and some that aren't so great. This time of year seems to be a problem for me with the weather changing so much. But one day at a time, it seems doable. Right now it seems as if my strength is not really improving. I hope I haven't leveled out where I am right now but perhaps the improvement is still happening but just more slowly. The Lord is in control, so I try to remember that His plans are better than mine but I have to work on remembering that more sometimes than others. :)
Tanner is finally off the crutches! Monday was 6 weeks and he was quite happy to put the crutches aside. He is still in the boot 24 hours a day and an xray this coming Monday and an appointment will tell us if he can go back to a shoe or if he will be hobbling around in the boot a while yet. He definitely won't be running the last cross country meet on Friday, much to his dismay!
My sister Tami has gotten confirmation that she does need to proceed with the hysterectomy. She has scheduled that surgery for November 16. This is going to be a big deal. Having this surgery done at age 28 is tough. She won't be able to lift for 6 weeks and having two kids age 2 and about 6 months is going to be really hard. She will need lots of help! We are praying that the surgery and recovery go smoothly and that she can resume her normal life without having this looming overhead.
Tanner is finally off the crutches! Monday was 6 weeks and he was quite happy to put the crutches aside. He is still in the boot 24 hours a day and an xray this coming Monday and an appointment will tell us if he can go back to a shoe or if he will be hobbling around in the boot a while yet. He definitely won't be running the last cross country meet on Friday, much to his dismay!
My sister Tami has gotten confirmation that she does need to proceed with the hysterectomy. She has scheduled that surgery for November 16. This is going to be a big deal. Having this surgery done at age 28 is tough. She won't be able to lift for 6 weeks and having two kids age 2 and about 6 months is going to be really hard. She will need lots of help! We are praying that the surgery and recovery go smoothly and that she can resume her normal life without having this looming overhead.
Sunday, October 9, 2011
Sabbath
Can it be Sunday again? I'm not sure how time disappears so quickly!
I continue doing okay but not great. I needed earplugs right away in church both services. I think the unsettled weather is continuing to cause this. Oh, for more stable weather! :) But, although I am a little frustrated with how my head is feeling, I know I could be so very much worse so I can deal with this.
I continue doing okay but not great. I needed earplugs right away in church both services. I think the unsettled weather is continuing to cause this. Oh, for more stable weather! :) But, although I am a little frustrated with how my head is feeling, I know I could be so very much worse so I can deal with this.
Thursday, October 6, 2011
Thursday
Well, I continue to do about the same. Today has been a harder day and it finally occurred to me a couple hours ago that perhaps it is because the weather seems to be changing today. Super windy and just unsettled feeling. So maybe the weather will change and I will pick up again. I have been busy, though, and that probably hasn't helped. I don't see that changing the next few days. Even if I am not doing the running with the kids, etc., just getting the kids out the door and keeping it all straight is overwhelming!
Exhaustion seems to dog me. I am so tired tonight that it takes a lot of effort to just walk across the room. Perhaps this will just be the way it is for me, but it is hard to try keeping up with four kids when I feel so whipped! But then I remind myself of how much I have to be thankful for. My headache is there, but I am not locked up in our bedroom absolutely miserable. That is definitely something to be thankful for each day lately!
Exhaustion seems to dog me. I am so tired tonight that it takes a lot of effort to just walk across the room. Perhaps this will just be the way it is for me, but it is hard to try keeping up with four kids when I feel so whipped! But then I remind myself of how much I have to be thankful for. My headache is there, but I am not locked up in our bedroom absolutely miserable. That is definitely something to be thankful for each day lately!
Sunday, October 2, 2011
Sunday
This is the day the Lord has made! Let us rejoice and be glad in it!
Another week has come and gone. It has been a busy week! I am asked often how my head is doing. I think that I am looking much better when I am well rested, but when I am worn out or been in a noisy place, I get the headache look fairly quickly. I do have a headache all the time yet, but for the most part it is mild enough that I can function. It does become stronger when I am in busy or loud places but I have tolerated more than what I expected the last few days. That is always a bonus! My ears still ring all the time and as my headache gets worse the ringing becomes louder. That is irritating, but I have had that for a long time now and am pretty used to that. The headache is always harder to get used to, but I think that my pain tolerance for the headache is pretty high. If I had this "mild" headache years ago, it would have slowed me down significantly more than it does now.
I am continuing to work at being thankful for all things. I can't say that I am thankful for the headache, but I am thankful for many of the things the Lord has orchestrated for me to deal with it. With my family close to help us, providing financially for us to continue moving forward, good health insurance :), and a faithful and loving husband that takes such good care of me! There are many more things, but if any of these things were missing it would be much harder. It hasn't been easy and obviously my health expenses have made a big impact on us but we are still moving forward and thankful for God's blessing on us. It is always encouraging to me to know that a few people check this blog out, too, and care about how I am doing. I hear it in person sometimes, but since I usually don't get out much at all this blog has been a good outlet for me and an encouragement. It is so easy to think about and emphasize the negative but there is a lot of positive to think about and be thankful for!
Another week has come and gone. It has been a busy week! I am asked often how my head is doing. I think that I am looking much better when I am well rested, but when I am worn out or been in a noisy place, I get the headache look fairly quickly. I do have a headache all the time yet, but for the most part it is mild enough that I can function. It does become stronger when I am in busy or loud places but I have tolerated more than what I expected the last few days. That is always a bonus! My ears still ring all the time and as my headache gets worse the ringing becomes louder. That is irritating, but I have had that for a long time now and am pretty used to that. The headache is always harder to get used to, but I think that my pain tolerance for the headache is pretty high. If I had this "mild" headache years ago, it would have slowed me down significantly more than it does now.
I am continuing to work at being thankful for all things. I can't say that I am thankful for the headache, but I am thankful for many of the things the Lord has orchestrated for me to deal with it. With my family close to help us, providing financially for us to continue moving forward, good health insurance :), and a faithful and loving husband that takes such good care of me! There are many more things, but if any of these things were missing it would be much harder. It hasn't been easy and obviously my health expenses have made a big impact on us but we are still moving forward and thankful for God's blessing on us. It is always encouraging to me to know that a few people check this blog out, too, and care about how I am doing. I hear it in person sometimes, but since I usually don't get out much at all this blog has been a good outlet for me and an encouragement. It is so easy to think about and emphasize the negative but there is a lot of positive to think about and be thankful for!
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