Chiari 1: Imagining A Patient's View

So I Say

Another headache
The third today
We all have them
So they say

I'm getting dizzy
My vision blurred
you're getting older
Don't be absurd

I'm staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can't find the words
My memory slipping
My speech gets slurred

We'll get a scan
Since you insist
If we find nothing
Please don't persist

Don't make me laugh
Don't make me cry
It hurts to strain
I don't know why

Your scan is fine
By report today
Incidental Chiari
So they say

Incidental
What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became to much

I waded through
The internet
Fearful of losing
What I have left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We'll find a way
To make it better
So I say

by John Oro', MD


I found this poem about the first disorder that I have--Chiari. Then layer that with the pseudotumor cerebri or also known as intracranial hypertension and no wonder I have headaches all the time! :)

Wednesday

Wow, time is disappearing! I am doing pretty well over all. What a blessing that is! There is always the ups and downs but in general things have been fairly level. That being said, I can feel the storm coming now!

I keep thinking about how blessed I am. It is pretty easy to get down about things that I can't do and places I can't go. But, I have been able to do so much more than I did last year, or even more than the year before that! How difficult it is to keep perspective in life.

We had a very nice Christmas. Christmas Eve was spent just with our family, so it was quiet and very nice. Christmas day was spent with my family, including my sisters and their families and my parents. What a blessing to be able to be with all of them! It was a little overwhelming sometimes, so I just left the room and sat quietly in an empty room for portions of the day, but that made it very doable.

The Lord has answered our prayers in a way that He knows is best for us and in a way that makes things easier for me to live day by day. His plan is always best even when we can't see how that could be, and I am very thankful that His plan has given me rest from the intensity of pain that I was experiencing daily before.

Remembering

My family.




My sisters




A week after getting out of the hospital the last time. This hospitalization was the longest at 5 weeks.




A week after the hospital stay--enjoy some time with the kids.

The long hospital stay. My family had a baby shower for little sister, Tami, in the hospital. The put some makeup on me and fixed me up a bit. It was wonderful!

Holding the little one. I remember that I was too weak to actually hold him, so my sister propped him up next to me so that I could enjoy little Kayden.

Following the first (and second) shunt surgery, my kids cut the remaining hair from my head.

Before the shunt surgeries when my head was really hurting.

Right after the first shunt surgery. The kids cut my hair, as pictured above, a few days later.

Following shunt surgery in March

It feels like the work week should be done. I am exhausted! My fault. A busy day Monday with work and our office Christmas party in the evening, and then work and Christmas shopping with my mom and an office appointment in the evening on Tuesday put me under. I am thankful that I got through it all, even though the shopping trip was entirely done from the wheelchair. But I paid for it pretty well on Wednesday and still have that "headache hangover" feel today. Not terrible, but not something I would choose. But I am thankful that it isn't worse today or that I wasn't even more miserable yesterday. Can I call that progress? A little, perhaps.

I love the Christmas season, but I am so very tired with all the extra's that it will be good for me to settle back into a little more quiet and steady life in January.

As I write this, I realize that my two year anniversary for the first shunt surgery was just yesterday. And the first shunt surgery, that I thought would be the final answer, was just a first of many, with the second surgery only a day later--two years ago today! So perhaps seeing some pictures from then and now would be a good reminder for me to be thankful that God has richly provided and that although I am not great, I am certainly better than I was.

I am obviously computer challenged. I decided to put on some pictures after writing. However, I couldn't seem to get them below this writing and they went on in the wrong order. Oh, well. The point is the same. From the first pictures (that was going to be the last) to the last I can see that I am looking much healthier. I really do have much to be thankful for this Christmas season!

Saturday

We have just experienced a huge snowstorm/blizzard. I have had a few calling me to see how I am doing, and amazingly I am doing very well! I could feel the storm coming, but it didn't make me miserable like those changes often do. Since this was such a big storm, it could have really hit me hard. Do I dare hope that with fall officially past that perhaps the weather systems won't affect me as badly? Maybe I am past the worst. But, I think for now I will just be thankful for the good day and continue just taking it a day at a time.

The Lord has been so merciful to me. So many people have prayed for me, and what an answer to prayer that I am doing better than I have for so long. What a blessing! The Lord has answered our prayers all along, although not always answering the way that we would have liked. But it is a blessing to know that the Lord has a plan for me and my family that is good, and that even if it isn't always understandable to us and not always what we would like, it is still good. God is so good!

This is so incredible that I had to share!

Christmas is coming

Where is the time going? Christmas will be here soon and I have barely started Christmas shopping. It is a little more challenging getting those things done when I am really dependent on having someone "take" me. I've done some internet shopping. But. . . Kyle may take me around a little tomorrow evening because I have a doctor's appointment in SF late in the afternoon. The poor man really isn't a shopper, so that isn't his favorite thing to do.

The weather has been more steady. I've had a few good days and have gotten a few more things done. This evening seems to not be as good but hopefully I am just more tired and that is affecting me. Physical therapy seems to help with ultrasound and deep massage on my right shoulder and neck. But that isn't really a long term solution.

Big week

Well, I have nearly made it through a very busy week. I am feeling it, though!

Kylie had a music concert Tuesday night, I had a meeting in Storm Lake all day Wednesday, Thursday night piano recital and Saturday is a church function in the morning and the kids' NISYO concert in the afternoon. If I can get through this week, I will be so happy! I really enjoy the activities but it is quite exhausting.

I squeezed in physical therapy this afternoon. My muscles were pretty tight and sore after all the activity. If I could just figure out the headache triggers so that I could do things to avoid the bigger headaches, it would be so nice! But no matter how I analyze it I can't always figure out what causes them. I know that the barometric pressure is a trigger, but I can't do anything about that one. Sometimes being too busy will cause it but sometimes it won't. I am trying very hard to keep my neck and shoulder muscles stretched and relaxed because when it becomes tight I know that it affects my head. But as for the rest, I guess I just continue on!

Thankful

I am thankful! After having a fairly strong headache Thursday and Friday, I woke up Saturday with the headache back to a more tolerable level. Oh, what a relief! I always know that it probably is temporary but in the back of my mind I am wondering if I am heading back down the difficult road that we have experienced before. Having another surgery just doesn't sound that appealing!

So Saturday was a good day. I did some Christmas baking with the kids and they really enjoyed frosting and decorating. What a blessing to be able to do these activities with the kids!

Happy Thanksgiving!

I hope that today was a blessed day for all. What a wonderful thing to have a day set aside to specifically be thankful and think about our blessings. God is good and all of these blessing have come from Him.

We had a very good day today with Kyle's side of the family at our home. They were wonderful in bringing a lot of food to share and we had a very nice day relaxing together.

The only challenge has been that once again I woke with a little stronger headache. Tolerable but just not so good. So I stayed away from a lot of the activity and layed down for a little while during dishes time. Not ideal, but could have been worse.

Tomorrow my sisters are going black Friday shopping early tomorrow. I was invited, but I knew I wouldn't be able to go even if my head was better. After they are done shopping, they will be together doing some baking. Oh, I would just love to do that, but probably not feasible either. With all the little ones running around and 13 kids in the house plus adults, it will just be more than I can handle. I am sad about it, though. I really dislike missing out on things, particularly whe I would really enjoy it if I could be there! Oh, well. It could be worse.

Tuesday

I seem to jump to conclusions when I have a better day. My head has been bothering me a little more the last days. I really don't know why. The weather seems steadier today but it hasn't helped much.

I am very thankful that I am able to be a part of the Thanksgiving celebration, though. I remember at least once staying home by myself while the rest of my family went off to celebrate elsewhere so that I had needed quiet.

This time of year is sometimes a little discouraging, too. There is so much happening and I feel like I can't keep up with it all. There are things that I would really like to do that I physically just can't do. I love being active and involved and I just can't do that. I try to remain thankful for those things I can do but I struggle.

Saturday

Well, I just wrote a long post about this last week and it disappeared! My internet isn't working very well today. I assumed that it would save te draft like usual but it didn't!


I am doing ok. It seems that my head has been a little more stable the last few days, which is good. Hopefully as fall is drawing to a close, my head will become a little more level as well.

There has been a lot happening the last little while. Evening meetings and events seem to drain me the most, and I had a few again this week. The week was topped off with a wonderful event, though. Both Tanner and Kylie qualified for the state Honor's Orchestra in Ames. So a big day driving there and back yesterday! We are thankful for the gifts the Lord has granted them musically and we're thankful for this opportunity that they had to use those gifts. Tanner has qualified before so this was our third time to drive for this event. I am thankful to say that I felt better this time than I have the previous two years we attended. They both really enjoyed playing with so many that were more advanced in their playing skills and remarked that it was pretty cool to play with others that are very focused on the conductor and at improving their skills. The concert was remarkable!



I am quite exhausted today, though! I am sitting quietly and resting as much as I can this morning because sadly we will be attending the funeral of Kyle's aunt this afternoon. It is still rather amazing to me that I can become so exhausted!



One of the evening activities that I was involved in this week is a Bible study. We are studying a very good book by Jerry Bridges called Respectable Sins. Very thought-provoking. This week's lesson was about Pride and Selfishnes. It has been very good for me to read this and contemplate how sinful I am even when I don't realize that I am sinning. Self reflection is important and realizing and studying the depth of my sin helps me realize what an incredible gift salvation is! One of the things we reflected on regarding pride is talking about things that we or our children accomplish without acknowledging that those gifts are from God. So I am going to try to be more faithful in that. God has given us so many gifts and how often do we take the credit for the accomplishments we attain without recognizing that they would be impossible without the gifts God has given us. So I am going to work on this area in my life. What a good reminder to me to be thankful in all things!

Wednesday

Well, I have been doing ok. Today has not been very good and I am sure the changing weather has much to do with it. I've been a little nervous about this weekend because there is a lot going on.

As a whole it seems that the headaches have maybe increased just a small notch but I have times that are much better than others. Right now my head is hurting enough to make me feel like not moving much. I would love to just reach inside my head and take out the part that hurts--sounds weird but . . .

It is still hard to answer people when they ask how I am feeling. Many times people really don't want to know--it is just a standard greeting it seems. When someone really wants to know I don't want to complain so much because I am obviously better than I was a couple years ago. That being said, I don't feel so honest in saying that I am good because I really am not that either. This has been a bit of a dilemna over time. When I do answer honestly, what do I say? Bad but good? Good but not so great? Could be better, could be worse? I think I look more "normal" so it appears that I am doing just fine until I am seen plugging my ears when a crowd is talking loudly or clapping. I do wonder if people that don't know my situation think I am rather odd when I plug my ears or can't concentrate on a conversation when there are other things going on around me. Oh, well. It could be worse. I could be stuck in my room with no noise and still hurting like crazy.

Interesting week

This last week has been a good week, but one of challenges! The weather has really done a number on me. One day was particularly difficult. I woke up and just sitting up in bed about knocked me over. My head was not so great all day, but I found out later that we had a record low barometer change and that explained why I felt so miserable. It sounds funny, but it is kind of a relief to me when I discover that it is weather related because then I can point to a reason for the problem. So I continue on.

We went to a great concert for Tanner this week. I had to step out of the gym for the band playing but wisely I did that before they even started. Band has always been much louder than I can handle. It is rather awkward to stand in the back hallway, though, and explain why I am listening from a distance. But it could be worse--I could have been home missing the whole thing. So I will stay in the hall when I have to and appreciate being able to listen, even if it isn't in my chair with everyone else.

Weather

Well, the weather has definitely changed. Not the best for my head!

Friday

Where do the weeks go? Monday morning had to have just been yesterday morning it seems. They say that time passes by even faster as we age. I must be very old!

This has been a relatively good week. I may have overdone it, particularly on Wednesday but the cost of it was just a slower, not so great day Thursday. I am so thankful that the relapse I experienced hasn't reoccured.

That being said, I have visited with the neurosurgeon, primary doctor and pharmacist. The ns basically said what I expected--call if it gets much worse and they will order a ct scan. The others have agreed that adding a dose of the current medication I am on is the first best step to see how things go. After a few weeks if I haven't improved we may add an additional medication to see how I respond to that. It feels good to have a plan and I am so thankful for my primary doctor and pharmacist being willing to work with me. They are completely on the same page that I am on--if things start getting worse we will jump on it right away to try to prevent the downward spiral that fall seems to bring on for me.

Ultimately, I know that having a plan isn't going to heal me and that God is fully in control. I am so thankful that the Lord has put the trained professionals in my life that He has chosen. Even if I do get worse and start having major problems again I am comforted that nothing happens to me outside of God's control. He has provided so richly for me and I know that He will provide the strength and courage that I will need if I have to walk that path again. What more can I ask for?

Sabbath

What a blessed day to worship the Lord! The weather continues to be stable which is such a blessing to me. The trees are showing such glorious colors! Again, I have so much to be thankful for!

Today was a little more challenging in the worship service with the sound level so out came the earplugs again. I am still a little unsettled about the "relapse" on Monday. What caused it? Is it an isolated event? Is it the start of a downward spiral? I am trying to think through things and be a little prepared just in case. I did talk to the neuro-surgeon's office this week and they of course said that there really isn't much they can do unless I start getting much worse. I expected that response and am fine with that. At this point I have gone to physical therapy a few times to try to relax my right shoulder and neck because it started bothering me more the day before the "event." I'm also researching my drug options and debating if adding another preventative might be beneficial. I have a couple ideas and will talk to my primary doctor this week about it.

My headache isn't bad now but it has increased a slight notch above where it was before Monday. So we will see what another week shall bring.

Wednesday

Thankfully it seems to have just been a bad day. My head is still feeling a little more "fragile" than usual but I haven't had the severity that I had on Monday. I am so thankful! I have been remembering again how the Lord has blessed me so richly! It is easy to focus on the hard things in life, but there are so many more blessings and ways that the Lord provides for my needs that I really shouldn't complain at all.

scary day

Today started out pretty normally. I felt fine and worked in my office as usual. At about noon today my head started hurting more and more and I became nauseated. I went home to lay down and started really hurting. I took a migraine med, thinking that perhaps this was just a migraine. Didn't help. A bit later Kyle gave me a shot of Toradol and I was able to rest after that. I am still not feeling right but not nearly as badly as I was. Please pray that this is just a day thing and that tomorrow will be better!

Sabbath

Another week is gone. The weather has been so beautiful! I am very thankful for that!

A lot has happened this week! We started with doing our duty at the concessions for a football game for our son's high school. It was fun, but was more than what I could handle. I knew that I was wearing out but by the time I got home I was miserable and had a very rough day on Tuesday. Thankfully it was just one day of recovery, though and Wednesday was much better. It was a good thing, too, because we went camping since the kids were out of school Thursday and Friday. It was beautiful and the kids did a great job packing up the camper. There are definitely advantages to having older kids that have learned a lot about responsibility in having a mother that is limited in activity! The camping was wonderful. The wheelchair came along and I had an exhausting day in the wheelchair going through the Omaha Zoo. How can I become so tired when all I do is sit? I haven't figured that out yet, but I was much more tired than the rest of my family and they all took turns pushing me around. We had given them the option of going to the zoo or another place that I would not have been able to go to because the wheelchair just wouldn't work there. They agreed that although the other place would have been their first choice, it was more important to them to go to a place that I could join them so they chose the zoo. I felt pretty blessed having the kids choose me over an activity they would have preferred.

The week also brought great sadness. Dear sweet little Allie was taken by her Heavenly Father to her final home early Saturday morning. Little Allie fought for her life for 45 days before the Lord took her. She is now walking streets of gold with her twin sister Alliese and their triplet sibling that was lost much earlier in the pregnancy. I am praying for the family that is mourning the loss of this sweet child. Two funerals in 1 1/2 months to say good-bye to their children will be a burden but I am so thankful that their faith in the Lord will sustain them.

Sabbath

I am excited to record that I have had the best couple of days that I have had for quite a while. Saturday and today have been so good! What a blessing to have a couple days that are good. I still have the headache, of course, but it is more mild and I could handle more noise yesterday and today than I have for a while. Oh, it feels so good to actually be closer to "normal!"

Today was a sad day as well. A member of our church lost her husband last night. He was failing for some time now, so it was certainly not unexpected. It is a blessing for him to be walking on streets of gold right now, but sad for the dear woman who will not see her husband again on this side of heaven. She is such a special lady and I mourn for her.

What a blessing good health is! I was scanning through a few pictures that I have on the computer and stumbled on a few of me after a couple of the surgeries & during the hospital stay. I can now see that I look a great deal better than I did then. What a blessing to be doing better! Perfect? Not nearly. But a lot better than "before."

Friday

This week overall has been a pretty normal week, with some better days and some days not as good. I came home a little earlier today because I am feeling a little more tired. It seems like by the end of the week it is just time to be home and have a little more rest time.

I am so thankful that my cousin's preemie daughter is doing ok. It seems like she has had a few small improvements that are encouraging. And little Jessica is still inside her mommy, which is a great place to be for her right now. She isn't growing like she should be, which is concerning. I continue to pray for these tiny little lives that are precious to our Lord.

In some ways I have found that my medical issues have been a blessing to me. I have probably written this before, but I know that the Lord has used these tough times to strengthen my faith, trust the Lord more fully and long for his returning. I wish that I wasn't such a slow learner that it took multiple brain surgeries for me to develop this, but I am thankful for the fruit of the struggles. I pray now that the lessons have been learned and that I can continue to grow in faith and at the same time grow in health!

Monday

Today was a little strange. I had pain in my head, but I wouldn't describe it as a headache. Make sense? It is hard to explain. Instead of a headache where it makes it harder to think or concentrate, I had a specific pain in my head. It is in the right side--where my head always hurts the most. It feels like the tube in the right side of my brain is irritating my brain. I think that technically that shouldn't be the case because I don't think you are supposed to feel things in your brain. However, I really feel like I can and it is quite irritating. I would just love to pull that tube right out, not that I could. I've had this sensation before but not as long or as "strong" as this time. I'm not sure, once again, if this is due to the huge weather fluctuation we've had today or just one of those things.

This is a lonely journey that I am on. The more my head hurts, the more I am forced into isolation from people and the noise that comes along with being with others. I am a social creature by nature and love to visit with people at church, etc., and so often I can't because of the noise in the room. I have been in this "forced isolation" for so long that I feel like I have lost touch with others. Will it always be this way?

Another Sunday

Not a lot of change. I've has a few better days this week and some that really weren't so great. It is hard to understand sometimes. I really wonder if this is how it is always going to be. Rather sobering even though it is better than it had been. Dear Lord, come quickly.

Sunday

I am thankful that yesterday and today have been better. What a difference feeling better can make on my outlook on life! I have to admit that I have been wondering what to do. My headaches continue to fluctuate quite a bit. They are not really bad--definitely tolerable. However, I feel like the intensity is just a little bit increased. My good days aren't quite as good and the bad days seem a little stronger.

I am thinking about my options. I don't think that this means that the shunts are not working. It just seems that I need to find a way to control the headache a little better. Over the last four years, with the exception of last year, fall is when I tend to start sliding down hill. I'm not sure if it is due to the weather change or if it is just how it works out, but I am wondering if the time of the year has some impact on the headaches becoming a little stronger. So, this isn't hugely concerning. I don't think that I am heading into more surgeries, ect. I just need to get this controlled a little better and perhaps it will level out a little better when the unstable weather is past.

Baby Allie is still holding on! For a few days the prognosis was not good, but she has rallied and improved slightly. Her kidney's are not functioning correctly so if she can remain stable they will need to start checking that out. Joyce's granddaughter, Jessica has not yet been born. What a blessing that is! She is now at 26 weeks gestation, so each day in the womb is a blessing. Her mommy is in the hospital until she is delivered. I continue to pray diligently for these precious baby girls.

Wednesday

Can it be Wednesday already?

The camping went fine. The kids had a great time and overall it was ok for me. Saturday was the best day I had. Sunday was ok, too. Monday was a little rough but we made it through. I am not feeling as well this afternoon again but the weather may easily play a part in that. I think that I should go into weather forcasting. I would certainly have a good average in predicting weather changes!

My cousin's baby continues to struggle. We continue praying for her as she is holding onto life. Her tiny little body is having a tough time of it, though. Please pray for little Allie! Joyce in my office has a daughter-in-law that is barely holding on to a pregnancy as well. She is about 25 1/2 weeks along now but her water broke last Friday. She is in the hospital and they are praying that the little one stays in the womb as long as possible. In both of these situations there are little ones at home as well missing their mommy's.

I know that God is in control, and that the Lord has a plan for each life that is the very best plan. Why is it so hard for us human's to understand? It has taught me reliance upon the Lord and deepened my faith but it does seem like there could be an easier way to learn. I yearn for the Lord's return, though. As I see so much sadness and heartbreak I thank the Lord that He is faithful and loves me more than I could ever imagine. I need to hang on to this fact.

Thursday

This has been a harder week. Overall I haven't been feeling very well, particularly near the end of the day. I've had a few bigger days in the office and that totally wipes me out. Yesterday I left early and slept hard for a couple hours in the afternoon. Then again today was another longer day and I am not feeling well. My headache is definitely stronger. And this becomes discouraging. I so long for a time that I can just feel good and not pay for doing "normal" things.

My heart is heavy also for my cousin and his wife as they lost a twin daughter and the remaining little girl is hanging on. They were born last week with medical problems at about 25 weeks gestation. Please pray for the parents and grandparents and for little Allie. The Lord is always faithful but humanly speaking it can be so hard to endure and understand. I am thankful for their faith in the Lord, though, and the hope that they have through Him. We don't choose these difficult paths but the Lord does bless us and we see God's grace more clearly in the tough times.

We are going camping over the long weekend near SF. This is always something that our family really enjoys but it is almost more than I can handle. Getting ready is difficult even though my kids and husband do a great deal of it, and even being there and out of my normal routine is sometimes tough. It is worth it for the kids, but it is a struggle for me. I am a little more concerned this time because I am not doing as well this week. It is better going into it feeling and being stronger so this time might be a little harder than usual. We'll make the best of it and pray that I start to improve.

Saturday

It has been a good week overall. This morning I awoke with a stronger headache, which is a bit frustrating. But despite a more painful head, it was a good day. Our older two kids played their violin & cello with a cousin on the violin and aunt on the piano for a wedding. It was just beautiful! I am so proud of all of them! The four will be playing for church in the morning so it will be fun to enjoy the music once more.

I ran into a friend I haven't seen for a while, and it was good to hear how she felt that I looked so much better! She has seen me through many of the tougher times. I have said this many times, but it is just hard to believe that it has been a year since I've had a hospital stay and a year since a surgery. What a blessing and a relief that I can actually stay healthy this long. Sometimes I feel like I am just waiting for the next time--like it is an inevitable thing. Actually it really is inevitable because I know these shunts won't work forever, but I hope that it is so long before they have to be replaced that I actually forget to think about it until it happens! For a while there it was so constant that it felt like it wouldn't end. So a year is really an accomplishment.

Tuesday

Well, Tanner is officially a high schooler. He had his first day--a half day--today. From what I can pry out of him, it seems that it was a good day! I am so thankful!

While we were at the freshman orientation, a lady that I have known in the past asked me how my headaches have been, not knowing about the surgeries, etc. She then told me that a relative about my age had been struggling with headaches and it sounded very similar to me with the noise sensitivity, etc. She died this spring and they discovered that it was due to an aneurysm. She said that she had been thinking a lot about me hoping that I had some resolution. What sad story to hear, and a bit sobering to me. I know that it so easily could have been me. But the Lord isn't finished with me yet.

Sunday

I haven't written for a while. My headaches have continued to vary quite a bit, but overall stronger and more uncomfortable. This becomes discouraging after a while. However, yesterday was the best day that I have had for a while. It was hot and humid but that doesn't necessarily affect me while the fluctuations do. My headache was very mild and I was able to do more than I typically do without the headache increasing. What a blessing it was to have a good day! Today started very good but this evening it is a little stronger--but definitely not bad.

Although the headaches have been more bothersome, it still has not been nearly as bad as they had been "before." I am very thankful for that. I have been told that I am looking so much better, and I have noticed that people don't comment about me looking ill. That is such a blessing and something that I had looked forward to for a long time. Along with it, though, is the challenge that although I look "normal" again I still don't have the strength to do nearly as much as I used to. I think along with looking better comes they normal expectations that I am not able to accomplish. Rather strange challenge, but a challenge none the less.

School starts this week. Tanner officially starts high school on Tuesday and the younger three on Wednesday. Back to a schedule, which should be a good thing, and hopefully a little more quiet time for me which should also be good. But it also becomes more busy with the extra stuff so we'll see how it all comes together. Tanner is definitely ready for high school. It is amazing how time passes so quickly. I remember his first day of pre-school when he was to introduce me by name with the other preschoolers and parents and we discovered that he didn't know my name! He introduced me as mom. It was so cute! Now he starts high school.

Wednesday

Still working on the melancholy. The weather continues to be very unsettled and consequently my head is really fluctuating in pain intensity. Right now I dream of someday living in a place that has no fluctuation of weather. Probably a dream that won't be fulfilled until I enter heaven's gates!

We registered Tanner last night for high school. Wow! I am not sure if I am ready for that step, but ready or not here we go! Tuition goes up considerably, too. Ouch! But so, so worth it to us. We are thankful that the Lord has provided the means and desire for our chidren to be educated in Christian schools. What a blessing to see our kids spending a large portion of their days being taught from a Christian perspective. We pray for our kids each day and are thankful for this opportunity, so no more complaining about tuition! :)

melancholy

I would describe myself quietly melancholy lately. As the new school year approaches I am a bit discouraged that I can't see more improvements in my strength and even in my headaches leveling out a bit. Yes, I am so much better than I was a year ago. I guess as humans we always want more than what we have and my desire is better health.

I need to get this out of my system and get back to being content in all circumstances, as Paul says we need to be. It certainly should be easier to find contentment now compared to where I have been "before."

Part of the reason that I might be struggling a little more is because it has been so very busy and stressful with the weather related problems around us. It has been rather intense and that just doesn't work as well for me.

Monday

It is definitely a Monday. So many have water in the basement with the record breaking rains we are having.

I am doing ok. It seems like I am still fluctuating with headache intensity, and that may just be how life will be from now on. Satuday was a rough day with a stronger headache, but yesterday was not as bad. I still have some pain where I hit my head a few weeks ago.

Life is just so difficult, and there are so many hard things. It certainly has caused me to yearn more for the Lord's return. I think of all those dealing with the weather related losses, financial problems, health problems, marital discord, etc. So many heartbreaking situations that are difficult to understand this side of heaven. I know the Lord's plan is best for us, but isn't always so easy to accept when you see people struggling and hurting. Dear Lord, please come quickly!

frustration

I am so frustrated with myself. I just can't seem to handle things as well. It is hard to explain, but I get overwhelmed so easily and then it seems like I am stuck. I can recognize what is happening, but I just can't get past it. I'm not sure why this continues to happen. I think the hardest part is with my kids. There is so much commotion sometimes with four kids and I just can't handle it more often than not. It isn't fair to the kids but there really isn't a solution. Sometimes it is the kids' fault--typical kids arguing with each other, etc., but sometimes it isn't.

Well, I had to vent a bit. This has been an ongoing problem that I thought would get better but it isn't. Sorry! I just had to sound off a bit. I think of all the residual issues this has been the most frustrating.

A bit better

I am thankful to say that I am feeling a little better starting yesterday. I hope it continues!

What a blessing to spend the Lord's day in church. I just am so thankful that I am able to attend regularly. What a blessing that is! I know it has been a year now since I have been home but I continue to find it such a blessing to be able to go to church after having to miss so much the previous three years when I struggled so much. I have been able to handle church pretty well with the noise, but after I struggle with the fellowship after. Many people stay to visit, which I love, but the noise level is just too much for me. I am so sorry to miss it but yet it is a small thing in the scope of it all.

Another year! Happy Birthday to me! :)

I have made it another year, and overall it has been a good year. I'm not sure if I am ready to actually be a year older, though! In a way it is really hard to believe that it has actually been a year since I've had a surgery or been hospitalized. What a blessing!

I still have a little more headache than before. The weather has been fluctuating yet, so I am hoping that is it. I am just taking things a day at a time, though, and hoping that I start feeling better

Saturday

Well, this hasn't been such a good week. I'm not really sure why. Not terrible, but I have definitely been more headachy than usual. Weather changes? Too busy? Not sure.

I don't remember if I wrote this already, but last Saturday I bumped my head right where one of the shunt tubes go into my skull. A sensitive area and I hit it with a cupboard door right in the worst spot. I didn't pass out from the pain, but close. It is still hurting so I hope I didn't damage anything there. I can still feel the tube and it feels intact. I am not starting to retain any spinal fluid in that spot, either, so it doesn't seem likely that it is leaking. It doesn't hurt like a bruise, so the pain there is a bit hard to explain. I am praying that I start picking up a little. I am still doing my normal thing (what is normal for me now anyway!) but just not feeling as well.

Sunday

Well, I "observed" the one year mark since being in the hospital. I have actually not had a surgery and/or been admitted into the hospital for a year! The only medical issue was the er visit when I couldn't stop throwing up. That is really an accomplishment for me, considering the challenges that I've had for the last four years. One year! Yippee!

Oh Lord, if it be your will let me avoid additional surgeries and/or hospital stays this next year! And if that isn't Your will, give me the strength and wisdom to handle the plans that You do have for my life! I certainly wouldn't choose the challenges that the Lord has given me and my family, but I know that His plans are best.

Another thought that has been stirring around in my mind is that the Lord has been gracious to me. Some have said that I am so strong, but the only strength that I have had is the strength given to me by the Lord. That being said, I have some pretty tough times of questioning, periods of anger about my circumstances and sadness at the many things that I have missed. I am far from perfect. There are so many "why's" that probably will never be answered this side of heaven, but I suspect that many people have some of those questions as well. I have had challenges but there are many others that have experienced difficulties much worse than mine. And medical issues aren't the only struggles or the worst struggles. I know that the Lord uses these periods of testing to strengthen His people, but in the midst of these trials it is difficult to not ask why. But then I turn back to Psalm 139 and remember that God is in control and He knows what is best for me--I don't! I will continue to look forward to the day of the Lord's return.

Tuesday

Holiday's are so wonderful. We really appreciated the time together celebrating the Fourth of July although we celebrated on the 5th. The weather wasn't so very great but we had a lot of fun and the timing of things worked out pretty well for us between times of rain.

I continue having so many thoughts of the time in the hospital. It seems odd to me that I keep thinking about that time when I really don't want to think about it. However, in many ways it has been good for me because it continues to remind me to be thankful. How very blessed we are!

A Psalm that continues to come to mind for me is Psalm 139. What a beautiful Psalm of comfort! For years I have considered Psalm 121 my favorite but Psalm 139 is definitely right up there. Knowing that the Lord knows everything about me including my thoughts and the words I speak before I even speak them! The verses 5 & 6 "You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is high; I cannot attain it." I love those words of comfort that promise that I can't do anything and nothing can happen to me that is outside of the Lord's sovereign will. That is so comforting! I remember reading the Psalms so often while in the hospital and being comforted and the continue to comfort me when I begin to question the Lord or become discouraged. God is good, all the time.

Friday

The weather seems to have settled a little the last few days and I have been feeling better. Dare I say that I may be gaining a little strength? I'm not back to where I was by a long stretch but feeling like I may have improved a bit. Oh, I am so very thankful that I am not in the hospital. I am remembering last year spending the 4th in the hospital and that is just not such a cheerful place to be, particularly over the holidays. I remember my parents and Karleen came down for a meal at noon at the cafeteria. I don't remember much beyond that and that is probably ok. What a blessing to be home and staying steady or slightly improving. I have a lot more concern and empathy for those that are in hospitals for a length of time, particularly holidays. I am so thankful that I wasn't there over Christmas!

Sabbath

I find it such a privilege to be able to go to church twice every Sunday. Memories of longing for corporate worship haven't disappeared. I find myself becoming emotional occasionally, particularly when singing the dear old Psalms and hymns. I have heard people sometimes say they are dry or boring but they must not be singing the beautiful words that I am singing. I enjoy singing the praise songs at other times the Psalms and hymns express so much of the Christian faith and the faithfulness and grace of our God.

The weather has been turbulant around here and my head has been affected by it, of course. Last night Kyle had his 25th high school class reunion 15 miles away. We drove separately so that if it was too noisy I could go home. After supper it was announced that a storm with 60 mph winds was on its way. Since our kids were on their own I decided to make a run for it so they wouldn't be alone when it hit. I made it most of the way when the storm hit. It was frightening! It suddenly started to pour down rain and the wind hit at the same time. I couldn't see anything except the white line. Then hail started coming down driven by the wind. I finally saw the white line stop and it appeared that there might be a side road so I bravely decided to drive off. Thankfully it was a side road so I pulled to the side and waited for the worst of the storm to pass. Lightening was striking all around me, my car was moving around from the wind and the hail was hitting my side window so hard that I was afraid it might break! It lasted for what seemed forever but was probably only around 10 minutes or so. The wind slowed, the hail stopped and the rain slowed. I made a run for home and found that I was only about three miles out. When I did get to town I was surprised that one of the sidestreets was almost entirely under water. I was pretty thankful to get home when I did! Kyle sat the storm out and had an easy drive home. I have definitely learned my lesson--I won't try to outrun a storm again!

One of the things I haven't done for at least three years is ride bike. We have enjoyed bike riding as a family quite a bit in the past. My balance is still enough of a problem that i haven't tackled that yet. The bouncing around may not be so great, either. I normally always hold handrails when I go up and down steps but tonight after church I started up stairs without the hand rail and halfway up started tipping over. I think I scared the person behind me. Very strange that my balance isn't so great, so I am just not sure how bike riding would go. I really want to so I might just try it, but a big bump to my head would be disastrous!

Another thing that is a bit of a mystery to me is that my right shoulder and arm still ache a lot and seem to be weaker. It isn't dramatic but is bothersome. I am right handed so I thought that it would improve as I use it more, but it is still noticeably weak to me, although I don't think anyone else would notice. Very strange.

Tuesday

We are settling back into a routine, as much as a routine is possible with four kids going in different directions! I continue to do fairly well with a few ups and downs now and then. We are so grateful for my health remaining relatively steady the last year. I kind of feel like I missed a year of my life, though. The kids will ask about something that happened last year and much of the time I just don't remember. Very strange feeling sometimes, but I am making up for it by making new memories.

The other day I decided to take the kids to Toy Story 3. Tara was quite afraid of me going. She was so worried because she knew that it would be loud with a lot of action. She tried to convince me that I really shouldn't go because she really didn't want me to be hurt or back to the hospital. I reassured her that it would be ok and that she didn't have to worry about mom. It went pretty well. I had my earplugs in right away, of course, and I shut my eyes sometimes during the "action" parts, but I did it! Afterwards I took it easy for a while and was a little more "headachey" but that was ok. I did it and Tara was reassured again that I am not hospital bound. Another accomplishment!

Home

We had such a nice time in Washington. There are some pretty special people back there! Tanner decided that he is going to live there and is plotting how he can get there again soon.

I am trying to get back into the swing of things, but it is a little overwhelming--not a surprise. Mountains of laundry and lots to do at work. I went to the office this morning but didn't overdo it since I am pretty tired. Of course, my head is hurting more right along with it. I suppose a few days and I will be back to where I was.

Kyle did such a great job taking the kids there and back. Kylie was sick to her stomach a couple times on the way back, but that is fairly normal for her. Poor girl. It seems that if she is out of her routine she gets sick. I think Kyle said that they drove something like 4800 miles. Big trip! My flights went pretty well. Each flight was on time and no problems.

We have much to be thankful for! Safe travel, a beautiful and quiet place to stay, friends and relatives showing us much kindness and some one on one with a treasured cousin before flying out. I am so thankful that I am not in the hospital--I was a very sick person a year ago right now. Now I just need to continue working on gaining my strength and walking through each day and taking things one at a time.

Almost home

I am jotting a quick note since I have access to a computer. We will be home soon--sometime on Tuesday.

The trip has gone well. I am so thankful that our travels went well, we were able to do some site-seeing and visited a lot of folks. What a blessing to hear again about how many have prayed for our family.

I have found that Washington weather is a little more agreeable with my head. The changing weather has not bothered me nearly as much as it does at home. Perhaps the barometric pressure doesn't fluctuate as much? Who knows. I am tired, though and my head is hurting more as the week has gone by, but it is still very tolerable. I've had a very quiet day today so hopefully tomorrow will be a little better.

Thanks for praying for us!

whirlwind

It seems that we are just rushing from one thing to the next this last while. It was quieter this week, but. . . . we are heading out tomorrow morning at 5:00 am for a family trip to Washington state. We have been hoping to do this for the last few years, but with my health being what it has been we have not been able to go. Since I am doing better we decided that we had better take advantage of it! It will be fun to visit places and loved ones that I saw so often as a child and now rarely see. The last time I was there was for my grandfather's funeral about 6 years ago, and that was a short trip with only time long enough to prepare a funeral. We are really looking forward to this time.

The logistics aren't always so easy, but they will work. I still do not travel well--riding in a bumping car is very hard on me. So, Kyle is dropping me off at the airport bright and early and then he and the kids will continue on and drive to Washington. I will fly in tomorrow afternoon, Lord willing, and Kyle and the kids will be driving in Saturday evening. The parents of a friend of Kyle have very graciously offered to let us stay in their condo while we are there, which is so very kind! It will give me a place to go for quiet time as I need it. I stayed home from work today to prepare for the trip, and although I am exhausted now we are ready and it went fairly well. Dear Renae, my sister, helped me again with some things. What a blessing family is!

I am not sure if I will have computer access while I am gone so I will update if I have the opportunity but otherwise I will write when we all get back. My head has been much better after a rough day on Monday, for which I am so thankful! I am rather curious how the climate, etc., will affect my head. Regardless, we are praying that the trip goes well and that we will have some great family memories!

Up and down

Well, yesterday went very well. I was quite exhausted by the end of the day but my head handled it pretty well. This morning, however, was another story. My head hurt quite a bit today. I guess I am paying today for the busy day yesterday. After really taking it easy for several hours today I picked up a bit but hopefully tomorrow will be better. These headaches really are puzzling. How can I seem to tolerate things fairly well yesterday but wake up the next day miserable. Strange--it would seem more likely that it would happen right away.

I had a quiet day at home most of the day. Tanner went to Grandpa's to do some work in his shop. The next two went swimming at the pool for the afternoon and Tara played with her cousins at their house. We went to Renae's for supper, but it was good to have quite a bit of quiet time today. It sometimes becomes discouraging to continue with these headaches even though they aren't nearly as bad as they were. I would love to be done with it! I pray that the Lord continues to give me and my family the grace to deal with it each day.

Better

Well, I've had some tougher days but I am feeling better again. I am so thankful! It has been a busy time with the things I need to go to, getting the kids to various activities and lessons, etc. I was careful today because tomorrow we are having a small 8th grade graduation for Tanner and my niece. Just immediate family but that still totals 32 people! It is at our house, but we are doing easy things and my sister made several things, etc. So I am being careful and hoping that tomorrow goes ok.

I am so thankful that I can be a part of all these activities, though. Last year at this time I was in a lot of pain. I wouldn't have been able to do all this if it had been last year. Providential that the difficult time was times well. Of course, all things are providential but I am thankful that the Lord has allowed me to be here in better shape. I pray that next year at this time I am ok as well because it will then be Kylie's graduation. She is already talking about her party next year--I hope I can do it!

Thursday

Wow, what a week! We started the week (or ended last week) with Tanner's birthday on Sunday. The kids had a concert Monday night. Kyle had a church meeting Tuesday night. Tanner's 8th grade graduation was Wednesday evening, then we have a graduation tonight, graduation party tomorrow night, birthday party Saturday evening and a little graduation party for Tanner and cousin on Sunday at noon. Way too much activity for this old lady! I am really feeling it and not feeling so well right now. I did lay down a couple hours this afternoon but my head is still hurting a little more than I like. I am staying home tonight and I am trying to take it slow but it isn't so easy with so much going on. A fair portion of my problem is just the physical aspect and unfortunately I mentally just don't handle things so well yet. I get overwhelmed much too easily. I know I am getting older but I if I was it better shape I could handle this better than what I am.

Tanner

Could it be? My oldest son is 15! Where does the time go? How do they grow in that time from an infant in my arms to a young man that I have to look up to? What a blessing he has been to us!

Friday

I haven't been feeling quite as well this week. Again I'm not sure why. It isn't bad but the headache is just a little more strong and bothersome. Oh, well. As long it doesn't get a lot worse I am ok.

It has been a while since I have given an update on the little things. My ears continue to ring--I think that will probably always be the case. I have had them not ring for a few days after each shunt placement or revision but then they start up again. So I know it can quit but just doesn't seem to want to. My right ear has been a little more painful again, too. It sometimes feels a little like an ear infection but I am sure it is just another symptom. The rash on my back is improving although I still get spots here and there. The eating is going much better. It seems that the only thing that I have be careful of is beef and to a certain extent pork. I ate a half of a hamburger last night, though, and it went pretty well. Progress!

The noise still bothers me quite a bit, particularly if there is a lot of activity occurring at the same time. Busy places just aren't so great for me. I will really be in trouble if one of my children decide to play basketball or volleyball! I think my balance is improving although when I get tired or overwhelmed I do feel a little unbalanced sometimes.

The sun is shining today and my small lilac tree is blooming beautifully right now. Spring is so wonderful! It is my favorite time of the year. I love seeing things coming to life after a long winter. God created this world with so much beauty!

contentment

Contentment is a difficult thing to achieve. I am so happy that I am doing as well as I am but how easy it is to complain about the things that just aren't as good. Why is it so easy to focus 0n the negative?

The sky is blue and the sun is shining after a long stretch of cold, windy and rainy weather. It is delightful to feel the sun shining on my face. I had the opportunity to watch my kids march in the parade today, which was so fun! But then I get a little frustrated that I have to plug my ears as the bands go by and that I am sitting in a wheelchair because I can't walk as far as necessary to get to the parade route. It is the normal, every day things that I didn't think about at all "before" that I sometimes miss the most. And I have to admit that it is a little embarrassing to ride in the wheelchair. I am always noticed. People wonder why I am in a wheelchair when I obviously can walk. But I guess that is my pride getting in the way. It is what it is, and despite all the tough things, I really have been blessed. The Lord has given me more time on this earth to enjoy watching my kids with my husband. So I will focus on the positive and put my frustrations aside.

Sabbath

Another Lord's day has come and is nearly gone. It has been a good week overall, although a bit exhausting. What a blessing to be back in our church to worship. It was a little quieter with all the college students gone again for the summer

We had a surprise birthday party for my mom, who turned 60 this last week What a surprise it was to her!

The busyness has made my headache a little bit stronger again. I slept for a few hours this afternoon and hopefully a good night sleep tonight will help. Oh, to live for even a day without a headache!

Normal

Well, life is slowly falling back to closer to normal again. It was so nice to get away and enjoy time with the family. The kids are now working hard at catching up with homework and that "stuff."

I am starting to feel a little better, too. It took a lot out of me being away and I have been so tired since being home. I'm sure that day by day it will improve. I am so happy that I stayed "ok" while we were gone, though. I wondered how it would go. The Lord answered many prayers in providing a nice, healthy time away.

I am still finding that when I overdo it a little my headache does become stronger so I am still trying to find that balance. Lately I think I have been a little lax on trying to exercise so I need to work on that more but again stay within the limits my body has. I sometimes think that my strength is like water in a glass. I am given so much "water" each day. When the glass runs out, I can't go back for a refill so I am done for the day. Each drop of water needs to be used effectively because the water (or energy) can run out pretty quickly if I squander it!

While we were gone we took my wheelchair. I ended up using it more than I would have liked. However, so many things were spread out and if I chose to walk one time, I might use most of my daily allotment of energy so Kyle really encouraged me to use the wheelchair. Sometimes I feel a little silly. I think people see me in it, but then see me walking around at our "destination" and wonder what I am up to. But despite my embarrassment of using the wheelchair, it does give me more freedom than I would have otherwise.

Back

We are back. Everything went well--for which we are so thankful! Now I just need some rest time to get on top of things again.

Friday

I am busy packing today. We are going away for a little bit with the kids. I am praying that it goes well for all of us but particularly that I don't have any problems. I would think that things will go well but I always feel that I have to be prepared for things to change.

This week an agent that I knew passed away from a massive heart attack. He was 47. Another reminder of the brevity of life. I am reminded that all of us need to live life appreciating each moment and always being prepared to meet the Lord. Living life as if we will live forever, as we so often do, and not living for the Lord is a dangerous thing.

I continue to pray for my children. The last few years with my health issues have left their mark on them. It seems that one or two are struggling more with it. We continue to hope that time heals the lingering fear in their minds.

Sunday

It is a Sunday evening and I have been reflecting on the last week and the last few years of my life. What a roller coaster! It seems as if I have more moments of dread lately for not particular reason.

The thought of staying in the hospital again fills me with dread. I think of different times that I have rolled into the operating room, the visits with a variety of doctors and different levels of pain. Difficult trips to Milwaukee with extra drugs pumped into me at the local hospital to help me make the trip. Sitting in my bedroom with earplugs and still being overwhelmed with the noise of my kids in the next room. Staying at my parents home a few times because I just couldn't handle the noise no matter how quiet my kids tried to be. Feeling so overwhelmed that I couldn't think through things enough to determine what clothes my kids needed during change of seasons for my sister to buy.

Oh, there have been some really tough times. I just dread the time that it happens again and pray that next time the shunt placements will go better. I pray that I don't get another infection. Occasionally I will have pain in my side where the shunt is now draining and I wonder if this is it. I long to be a mom to my kids at least until they are in college and a little more independent. I pray that the Lord gives me that time to be here with them. the Lord is in control and if He does decide to take me earlier, I know that He will provide for my husband and kids and will give them what they need. But I pray that this is not His plan and that if it is He gives each of them and all the members of my family a special measure of grace.

I am not living in fear but I it just seems that I will have flashbacks sometimes that continue to bring the memories to the front of my mind again. This continues to be the longest time that I have done fairly well and I am so thankful for these days of near normalcy--for my sake and for my entire family. What a blessing this has been!

Nothing new

I am so thankful that the weather has warmed! No snow is just great, too. :) Even if the temperatures aren't so warm, just seeing the sun shine is such a blessing.

I have been doing fairly well. Of course, the storms coming through bothered me a little, but it was ok. This time of year just seems busier and I am feeling more tired. But I would guess there are a few other moms that would say the same. It is a blessing to be involved in the activity even as a spectator sometimes, though.

Songs run through my mind a lot. I love music and couldn't listen to music at all during the period of time that my headaches were stronger. Now to be able to turn on music is just such a great thing! Back to the song running through my mind, though. There is a song that says something like "How can I say thanks for the things You have done for me? Things so undeserved that you came and gave your life to me." and so on. I really do have so much to be thankful for this beautiful spring day!

Learning opportunity

Well, I did something rather um. . . dumb. . . this week. The story begins with my vitamins running out over the weekend. I take several really good vitamins each morning and evening. I knew they would be coming in mid to late this week so I just didn't take any. However, I always take a pill in the morning and evening. But, since I take it with my vitamins I completely forgot to take it. Well, my headache became stronger and stronger. Finally Wednesday morning I told Kyle that I just wasn't sure what to do. Pain medication doesn't really help. Welll, we were discussing it and he asked me about the pill I take. I then realized that I hadn't been taking it! I immediately started taking it again and within a day I started feeling better.

It was not so smart, but it was an interesting test! Obviously I am not just imagining that it helps! I don't think I will do that again. It seems so ridiculous that I forgot to take it, but I think that it was such a habit to take them all together and since the habit was "broken" I just didn't think about it. I am thankful that it really is helping. The yucky weather earlier this week didn't help the situation, either.

Happy Easter

What a blessed day! I really can't remember the last few Easters. It is kind of a scary thing to have such large blocks of time missing in my mind. This was a memorable day, though. We had such an awesome sermon in church today, and the Easter hymns were just beautiful. What a wonderful day to remember!

Kyle's family came to my house for dinner today, which was an accomplishment for me! I used to do these things regularly. However, I have to quickly add that I just took care of the ham and potatoes and they did all the rest of the food. It made it much easier for me, and even then it was a bit exhausting but doable. It was so nice to enjoy their company today, though, and to be able to do something like this again.

We had such a nice dinner on Saturday for Kyle's aunts birthday. It was fun to see many that I haven't seen for quite a while--some not since they visited me in the hospital. I think that I look better now than I did then. What a blessing to find out how many of them have followed this blog. I have been so blessed in many ways through this difficult journey. Kyle publicly thanked them for their support of us which was a bit emotional but we really wanted to express our thankfulness for such kindness shown to us.

I am not giving up, but yet I suspect that I may not completely regain my strength. Perhaps I will need to learn how to live this way. Exercise is still difficult. I can do some, but it doesn't take too much activity to make my head hurt worse. However, if I don't push myself I am not going to gain strength very fast, either. On days that I have kept things pretty low key I can walk around the block. I have learned, though, that if I am not very well rested I had better not try to walk around the block or I will pay for it!

A week has passed. . .

A week has passed since I have written. Things continue to be about the same. I had a couple rough days Friday and Saturday. Part of the problem was the weather change and the other problem was my activity. I attended our church talent show and really enjoyed it but it was much too loud for me. I knew it and made it through a little over half, then had to go into the adjoining hallway that was quieter. It always takes a good 24 hours to "recover" and have my headache settle down. However, I also ended up going shopping for a time on Saturday also, which wasn't so wise but again one of those things. I really needed to do it and it worked for my sister to take me around. I got a lot done but was pretty worn out and the headache wasn't so great, either.

This week so far has been better. I have kept my activity down which seems to help. This will be a busy weekend again, though, with Easter coming up. I am so thankful that I can take part in some of the activities of normal life, though. I really hope that I can gradually regain my strength and continue working into a more normal life.

continuing along

I seem to be holding fairly steady. Yesterday wasn't so great, but still quite tolerable. Things seem to stay fairly busy and sometimes I am amazed at how much I am doing while other times I get a bit frustrated at how little I can do. What a crazy problem. It boils down to perspective. If I compare it to life before headaches, I am doing pathetically little. If I think about what I could do 6 months ago or a year ago, I have made progress.

Probably the best thing to me right now is the typical person that sees me doesn't immediately worry about me collapsing in front of them. I think I am looking pretty normal. A few months ago if stranger saw me they seemed to become quite concerned about me staying on my feet. Now I really don't get comments from strangers--it is nice to blend in. :) Although having hair covering my head probably helps that a bit. :)

Have I said lately how thankful I am to be alive? I am so glad that I am here with my husband and kids, seeing their programs and hearing them talk about things that are exciting them. It would have been easier for me if I hadn't pulled through everything, but I would have missed so much! It makes me sad thinking about my kids growing up without a mom. I am thankful that the Lord saw fit to keep me here a while longer. I may not be the "old" mom that could do everything I could do with and for them before, but at least I am here.

Busy times

It has been a busy time again, but I am doing ok over all! The older kids were in the school play and did a great job. The school auction was fun but much too loud (even with earplugs) so I paid for the short amount of time I spent in the actual auction for a couple days with a stronger headache. Yesterday Tara slammed her finger in the door and really hurt her finger. Kyle and I were gone so Tanner cleaned it up and wrapped it. Since she was playing I didn't worry much until I took off the bandaid this morning. The flesh was scraped way down and very swollen. I may have seen bone--there was a spot of white--so I brought her in. It wasn't broken and no tendons severed so they cleaned it a little more and sent us on our way. It looks really awful. No stitches I think because it was too swelled and not enough flesh to stitch. I've never had a strong stomach but thought after all the surgeries I have had that I would be a little tougher, but this one was a little much for me. I held it together but . . .I decided Kyle might have to take care of the daily rebandaging of this one!

It's been a year. . .

since Kyle and I said our good-byes. A year ago today I had a complication a day after a shunt surgery and we both thought I was going to die. I rather suddenly had incredible pain in my head that pain meds couldn't touch. It was a horrible time of incredible pain and tearful good-byes as I tried to give a few messages for Kyle to pass on to those I love. Facing death tends to refine you. I remember little about the time, but I do remember Kyle holding my hand and periodically reading to me from the Psalms. . . the only real comfort that I had.

I am thankful to be able to look back at that day and a few others that we thought may be the end and know that I am still here. The Lord has a plan for my life--a plan for each of our lives. I am thankful that I am still a mom to my kids and a wife to my faithful husband. The Lord has blessed us.

And Kyle tells me that it is a Saint Patricks Day that he will never forget.

Sabbath

Another day of rest has come and is nearly gone. How quickly time seems to be going by.

Well, Friday was a big day and I didn't feel so good Saturday. But today has been better again, so that recovery period isn't too bad. So what did I do Friday? I worked for 2 hours at the office, drove to Sioux City, had lunch with my sister while my van was worked on, drove home, rested then had supper out with a few friends. Our oldest daughter also had two friends overnight for her birthday. Not an exceptionally strenuous day for the normal person, so Kyle had to laugh a little that I had really accomplished very little but needed a day to recover. But the other side is that I actually did all of those things and a few months ago I never would have been able to do that much. So I can't measure my accomplishments by what others can do but by the tiny steps I continue to take in the right direction.

The Lord has blessed us so much. We have had a tough time, and had significant challenges. But God has been so good to us and provided the grace and strength each day in the exact measurements that we have needed. If I didn't know with all my heart that God is in control, that he has planned this difficult time for my growth and time of testing, I don't think that I would have made it. I really don't know how a person that doesn't have a sincere faith in the Lord can deal with the things that we have endured. He didn't make it easy for us, but he didn't promise easy. He did promise to be with me every step of the way, though, and what a comfort that is.

Accomplishments big & small

I actually drove myself to Sioux City and back today--about 45 miles each way. This is the first time that I remember over the last year or two that I have done that. I am thankful it went well!

The other accomplishment is rather funny but I am excited that my toenails are growing again. They really stopped growing for at least the last year. I guess my body was putting all of its energy into just getting better and now it has a little more energy on the side to do the menial things like growing toenails. :) I noticed about a month ago that my hair is also beginning to grow a little faster--back to normal. So I guess these things are small signs that I am getting better. Praise the Lord!

Holly

A person named Holly commented on my blog. If you are reading this, I would enjoy having you email me! You are the first person that I have found that have both chiari and intracranial hypertension. My email address is in my profile.
Thanks!

Tuesday

My head is still doing pretty well. I am so enjoying the moments of feeling fairly clear during the day. I am still quite exhausted by night time, and of course my head doesn't feel as good as evening arrives.

The rash is a bit of a mystery. The dermatologist told me that it is an infection but the lab results came back negative, so now he isn't sure what it is, either. I think that I will wait and see if it starts getting better as I continue to apply a medication to it twice a day. It is really very minor in the scope of things, but a bit irritating. My lower back is the worst, but I have a few spots on my legs, stomach, arms, and have occasionally had one on my face and in my mouth. Gr. . .

Saturday

The busy days continue, but I am doing ok. I am very exhausted by the time I get to bed, but I am making it through the days with several rests in the chair interspersed through the day.

My sister Renae moved to town this weekend. Everything went quite well although I wish that I was able to help more than I can. Someday I hope that I am able to do more so I can be of more help. But a day at a time.

My head has been staying pretty steady lately at a very tolerable level. My ears ring all the time yet but I am tolerating noise a little better I think. I am so thankful to be at the point that I am. I long for more, yet when I think about where I came from I am amazed that I am doing this well. What a blessing it is.

Have a blessed sabbath.

busy days

The new muscle relaxer seems to be working pretty well, so I will probably try to get a prescription for that one.

The days seem to be so busy lately. Kyle has had lots of church meetings lately. We had four parent/teacher/student conferences last night. Tara had her ears checked again and they are looking pretty good! (What an answer to prayer!) She had a little "negative pressure" in one ear, but no holes, fluid or infection. At this point we will just wait and see what happens.

I finally saw the dermatologist today in SF. Evidently I have an infection that is causing the rash and sores. Probably should have checked it out a few months ago, but now is better than never. So hopefully I can get that cleared up. I didn't think to ask but I am now wondering if an infection may be somewhat delaying my regaining of strength? Probably not, but I can always hope that there is a reason that can easily be resolved and I suddenly become strong again!

Happy Birthday, Riley!

Today Riley turns 8. How can that time go by so quickly! It seems like just yesterday when we got the call that we could fly to Guatemala to take our son home. What a blessing he is in our lives! Sometimes we are told that he is lucky but we know that we are the lucky ones, privileged to be chosen to raise our son.

I recovered very quickly from my bout of sickness earlier this week. Of course, it seemed to sap more strength from me again and I am climbing back from that. I am very tired. Thankfully, I am the only person that was sick in our family. It does make me wonder a little more about whether it was the flu. I had a small amount of steak that evening, but more than I have had before. Perhaps that caused me to get very sick. It is hard to say. I am not at all tempted to try it again and see what happens!

My head is holding pretty steady. Today wasn't quite as good, but still I can't complain. If I can stay steady like this it would be ok. I discovered that the muscle relaxer that I've been taking (left over from earlier treatments for headaches) is over $200, so since I used the last this morning I am trying one of the others that I have in the cupboard in hopes that it will work as well. I have three to try in my arsenal at home so I am trying the least expensive one now to see how it goes.

Small bump in the road

Well, I spent a little time in the hospital again. Yep, you read it correctly. We are very thankful, though, that it turned out to be very minor. I started throwing up last night and heaved almost contantly for several hours till Kyle brought me in. Of course, with my issues, they were a little extra concerned that it might be more than the flu, but it appears that is all it is. I spent about 12 hours there in observation and then was released. I have dreaded the hospital so much, but this was pretty easy. What a way to spend Kyle's birthday!

We thankful for the Lord's provision in protecting me from something more serious than the flu! A shunt infection would not be so great--I already know that road from this summer!

It wasn't funny at the time, but Kyle kept asking me if he could bring me in. "Can I bring you to the hospital?" I said, "no!" We repeated this several times until I finally agreed. Kyle moved pretty fast when he heard a quiet yes so that I wouldn't have time to change my mind! Since he carried me out to the car, I ended up not having shoes on and had my nighty on over my sweats. I didn't care when he brought me in but felt a little more silly when I walked out!

Sunday

Yesterday was rough but today is much better. I am so thankful! I didn't make it through church again because the sound system was too loud for me, but I could listen in the hall. My head yesterday was the worst it has been since this summer. It is hard not to start wondering if this is the start again. My biggest question that looms in my mind is if I have to have a shunt revised again, who will do it? Probably the doc in SF but he hasn't actually worked in my brain like the other has, which honestly makes me a little more nervous. Hopefully I won't have to make that decision for a very long time!

??

I may have tried a little too much yesterday, particularly going to our school's soup supper last night. My head is hurting more this morning than it has for quite a while. The barometer is level and as far as I know there aren't storms forcasted. It is overcast but that doesn't always cause me problems. Once again I am working very hard at just taking this a day at a time. I really can't let one day throw me into a panic. I sound like I am working very hard to convince myself. . . and I am.

A reminder. . God is in control

Well, my last post described the good-bye of Evan. Today we are reminded that God's plans are above our plans. The doctors said that the end at hand but that was not the case. We don't know what His plans are, but Evan is still living. I really don't know his prognosis at this point, but he has been given precious days with this family that were not expected. What a blessing!

I continue to do better than I had been. I'm not sure if it is the muscle relaxer or if I am just going through a little better time--it often seems that I go up and down a little. But this "up" has lasted a little while now, which is encouraging.

heartache

My thoughts and prayers are with the VG family today as they wait for their beloved Evan to leave his earthly body of suffering. His accident occurred on my birthday this summer--July 21, causing severe brain injury. He has developed an infection in the spinal fluid that is causing severe intracranial hypertension. Please keep this family in your prayers as they say good-bye. "Yea, as I walk through the valley of the shadow of death, I shall fear no evil. For You are with me. Your rod and your staff, they comfort me. You prepare a table before my enemies. My cup overflows."

Thursday

I am continuing to have a better week. Even with a system moving in right now it seems like it hasn't affected me nearly as much as it was. I hope I'm not speaking too quickly! It is a relief to feel better and it gives me a little more optimism that I can deal with this. I was becoming discouraged last week and the week before because I was feeling worse and it was becoming more difficult to deal with it. Still not terrible at all, but just more painful and more wearing. Pain can become so exhausting sometimes! I try very hard to take everything one day at a time and remain optimistic but it is harder sometimes when the pain level is higher.

My ability to eat foods continues to improve. I am able to eat a little more beef. It bothers me but it is tolerable if I limit how much I have and only try it once during the day. The rash seems to be getting a little worse. Gr. . . A minor irritation but an irritation all the same. But I will take a rash any day over a strong headache! My ears are still ringing all the time. But life is good. The Lord has blessed me so richly!

Better

I have been consistently taking a muscle relaxer twice a day and that seems to be helping a little. I am trying to take things a little slower, too, which is probably a help. Plus, today the sun is shining! (Althought it is absolutely freezing outside!) So, perhaps a combination of everything but whatever it is I will appreciate it and hope things improve a little more.

Reality

I have to admit, finally, that I am not doing as well. Not terrible! So I hate to complain. But I feel like I am just not as good. My head is bothering me a little more and because of that I am not moving forward with gaining strength, either. I think it has been about 1.5 to 2 weeks now that I haven't been feeling as well. Is it all weather? I don't know. So, what to do? I don't know that, either. I decided last night to start a muscle relaxer again--I have some left over. I can take it morning and night but just started with one at night. I think tomorrow I will take one in the morning, too. I have been holding out on going to physical therapy--I just haven't wanted to make any more contributions toward my deductible. However, I think that might be the next step. It seems like the ultrasound and massage on my neck and shoulder helps. That also makes me wonder if this headache is more chiari related than the intracranial hypertension. In ways it really doesn't matter, but if it is the IH getting worse, it would not be good. I am enjoying having hair and another surgery just doesn't sound all that appealing. That is jumping to a big conclusion, though, and I am not nearly bad enough for that resort.

The frustrating thing is that in many ways I feel like I am on my own with this. The neurosurgeons really don't want to see me unless I get really bad and need a surgery. I certainly don't want that! So I am trying to self-diagnose and self-treat. Not sure if that is wise, but I really don't know what else to do. Maybe this weather will blow over here pretty soon and I will start improving.

Why

Why does the Lord give us hardship and pain? Is it to cause in us a longing for Him and His return? I think I may "see" pain in others lives more clearly than I had before. Sadness, pain, depression, loss. So much hardship and difficult things for us to understand. I believe that the difficulties in my life has given me a different, and better perspective. I believe that is ok to question and wonder why these things happen as long as I continue to trust God is in control and has a plan and know, even though I don't understand, that His plans is always best. Oh, Lord, come quickly.

Tara

My youngest has made it her mission to break our hope of not meeting our health insurance deductible this year. :) First stitches. This morning her eardrum ruptured. Not good--her tubes just were removed from her ears a month ago. I am a little worried about the direction this is going!

I noticed that this month I have started nearly every post about the weather effects. One more interesting comment on that. I signed up for an online warning email that lets you know if conditions are causing headaches for people with migraines. I think I get a warning email about every other day! Of course, I really don't have migraines but headaches none the less. Interesting or frustrating--depends on the day!

an accounting continued. . .

I forgot to mention two things. .

8. The ringing in my ears continues to be a constant thing. It is something I can certainly live with but it can drive me a little crazy especially when I am tired.
9. I probably mentioned quite a while ago that I had lost the feeling in my scalp from the tips of my ears up and over my head, down to my hairline in front and down the back of my head about an inch. That has gradually improved so that now I have about a 3-4 inch swath over the top of my head that is still numb. The doctor had said that it would probably come back eventually and it is very gradually. It is a strange thing to have someone touch the top of your head and know they are touching it but not being able to feel it. Even stranger is when the top of my head itches, but I can't feel that I am itching it so I can't get rid of that sensation. I lost the feeling on the top of my head after the March surgery.

An accounting. . .

I thought I would give a run down on the challenges I've had and how they are going.
1. The headache is staying fairly steady with ups and downs which are definitely impacted by weather.
2. Eating has improved quite a bit since leaving the hospital. I am still challenged by beef but am able to eat a little here and there. I need to experiment a little more with the organic beef since the one time I had it I didn't seem to have the side effects. Typically I will have pain under my lower right rib and occasionally I will become nauseated if I eat the wrong things.
3. Balance has improved, although still not normal. I take extra caution going down stairs always holding a railing and am very cautious on snow and ice.
4. The rash has been interesting. Someday I probably should have it checked out by a dermatologist but I don't have the desire at this point. My back is the worst and it is becoming more itchy. I have some spots all over and now a few on my face. My neck becomes really rashy on occasion, but often lasts a few hours then seems to subside. Weird.
5. My weight is nearly normal. I am about back to my "normal" weight prior to the weight gain I experienced while on a huge amounts of drugs through the Chicago headache clinic. Perhaps it was a good thing that I had that weight gain since I had a significant weight loss this last year from repeated surgeries.
6. The incisions have healed nicely, although the 12" scar on my stomach is still dark red. My stomach feels much better although it is still fairly sensitive if my daughter hugs me a little hard. The incision under my left arm where the chest tube went in is a little bothersome. It is sensitive to clothing, etc.
7. Finally, my strength doesn't seem to be gaining all that much. I am able to work in the office until about 1:30 most days but then need to rest for a couple hours. After that I am up and down but become quite exhausted very easily. I called the neurosurgeon in SF to see what he thought and he said that it could take a couple of years to really regain my strength. Since I can't exercise to the point of "pushing it" without getting a headache, it seems very difficult to make gains in this area. I also become mentally exhausted and overwhelmed fairly easy. I just can't seem to deal with things and handle things like I used to. Hopefully that will continue to improve.

So that is a run down of where I am at. Today church was more challenging. I ended up having to walk out this morning because the volume of the sound system was turned up just a little too much for me to deal with. Tonight was a little better but I still needed earplugs for the first time in a while. That was discouraging. However, the weather is once again unsettled so perhaps my head is more bothered because of that and the sound just made it a little worse. Who knows?

Wednesday

Well, the yucky weather arrived and I'm still not feeling so well. With all the ice I worry more about falling. My balance has improved but I still feel a little off balance. I really don't know if it would really hurt me to fall, but I worry about banging my head or even having too big of a jolt. Could it move the tubes in my brain? I would guess not, but I hope I don't have to find out. My head used to hurt so badly that the thought of the jolt just made me quiver. Now it would still really hurt, but I could handle it, I think.

After I write all that, I have to wonder how I dare to complain when I think about the intense suffering that the people in Haiti are enduring right now. I can't imagine the devastation, loss of family and friends, medical issues that are untreated and the overwhelming loss and hopelessness that they must be experiencing. There really is so much suffering in this world. As I have said before, suffering myself and seeing others suffer really makes me long more for our Lord's return. I am ready for that day. Are you?