Quick update

It feels like today was a marathon, but I made it to the finish line! Yes!

The headache is definitely tolerable yet and I can live with it this way, but I think it is inching up slowly. I am starting a new drug tonight and increasing the dosage of the one I started last week. We are praying that I will be able to tolerate the drug and that it will be just enough to take care of the spinal fluid building up.

My lower abdomen is seeming to get more and more painful during different parts of the day. I suspect that I am going to have to do something with that. It would mean another surgery but I would guess that it would be minor and not difficult to recover from. The thought of yet another surgery sickens me but it may be the best alternative. We'll wait and see. . .

Monday

I am feeling so overwhelmed by things right now, and not sure why. Time in the office is overwhelming because I have been out so long and then I am exhausted when I am home. My lower abdomen seems to be causing me more problems, especially later in the day so I really am doing very little in the afternoons and evenings it seems. Thinking more clearly also reveals all the things that I haven't done and activities I haven't enjoyed with my kids and the list goes on. I really work hard at just living moment by moment and day by day but the last couple days I have let myself get beyond that, which isn't a good thing. Sometimes I hope that I will wake up and this will just have been a bad dream.

Sabbath

I have not been updating much lately and I am sorry. Admitting that the headaches are back on the blog has made me think about things more then I like.

The headaches still are definitely tolerable and I can live this way if they don't increase. They have grown but very slowly--much more slowly then they have in the past. Sound is starting to bother me a little more, but I can still go to church and do things. I feel like I am trying to get everything in that I can just in case. . . . and I have been able to do several things.

The "biggest" thing that I have done is had one of my sisters take me shopping last night. That was my first time in a clothing store for a very long time. The first store didn't have a wheel chair, so I moved around a couple sections while she found a few things for me and the second place did have a wheelchair so we zipped around for a few minutes. Since I haven't really regained the weight I have needed to get a few things that fit--my things fall off when buttoned. :) I haven't tried anything on yet, but hopefully a few things will work. I will admit that I was miserable coming home and didn't move the rest of the night but it was still a nice accomplishment. I have been getting into the office most days for a couple hours and feel totally overwhelmed! I've also made it to the kids events, which have slowed but are enjoyable.

I continue to research and have found another possibility of a doctor that appears to spend more time on the disease that I have been treating for. The negative is that he is 14 hours away and I don't think I can get that far yet, but I hope to call to see what I can find out about them. I also found another drug that I am going to pursue that may be a better alternative. The one that I started this past week doesn't seem to be helping and it should be a fast acting drug.

The Sabbath has been a blessing to us and I hope it is for you as well.

Not so great

I am longing for normalcy. Tonight I went to HyVee for the first time in many months and followed Kyle while he got the groceries. I probably shouldn't have, but. . .

Overall, yesterday was a pretty good day. Surprising after having a big day the day before. Today, however, hasn't been as good. My lower abdomen is hurting a lot, my ears are ringing loudly and my head hurts.

Yes, you read correctly. The headaches are small compared to before surgery, but they are back and have been since a day or two before Good Friday. I just didn't want to say it or write it because denial works pretty well sometimes. The headache is the reason for the ct scan and trying the new drug. I can deal with it at the level it is, and even act normal much of the time but the moments I allow myself to think about it can be terrifying. I really don't like to talk about it so if you see me and ask how I am doing, I might not be entirely forthright about it. Please continue to pray.

Thank you!

I appreciate your prayers today. The class went well. Of course, by the time it was done I was "done" too, but it is taken care of for another year.

Today I talked to my neurosurgeon as well. About the only thing that he said about my ct scan is that my ventricles are very, very small. We knew that and he knew that but he continues to emphasize this because that is the primary reason that the shunts don't function as well as they would on another person. Otherwise, there wasn't anything concerning. I expected that b/c they have always been normal with the exception of the very first revision surgery the day after the first shunt was placed.

He is starting me on a drug that I haven't tried before that might help reduce the amount of spinal fluid. However, I am not expecting much because typically it is prescribed with another drug I can't tolerate. He previously told me that he didn't think that this drug would be effective, but I guess it is worth a try.

Two posts in one day!

I realized today that I have my compliance class tomorrow! I thought it was on Thursday--0ops! Please pray for strength to make it through. I don't have to pass any tests, but I do have to sit in the class from 10-3:00 in SF--so travel time on top of it. Once again, Kyle is taking me. I could probably get myself there, but I may not be able to get myself home. This is the last "hurdle" that I need to get through for the rest of the year, and it will be a relief not to have them looming.

The future continues to seem a little uncertain for me.

A day behind :)

I was able to attend church twice yesterday--how wonderful! We also had the opportunity to have dinner with Kyle's family, too, and it was so nice to see everyone together!

It was 5 weeks ago today since my most recent surgery. My lower abdomen is still causing me a great deal of pain at times, which is rather frustrating. I keep hoping that it will start settling down as time goes by. I am noticing that I am a little more sensitive to noise again, although not nearly to the extent that it was before. We continue to try to just take one day at a time.

Saturday

Another busy day yesterday that went well. :) Our older two kids were in an orchestra concert and I was able to attend--what a blessing! I rested for a while, then Kyle and I went out for supper. We decided a "date" outside a hospital would be nice and that hasn't happened for a very long time! (The hospital setting isn't the most romantic of settings!)

We have again been blessed by many acts of kindness, some of which have been anonymous. We are so thankful for the encouragement that so many of you have given us through various actions. A special thank you to so many at Redeemer that have been continuing to pray for us and shower us with kindness. It truly is overwhelming to have so many showing us they care!

By the way, the doctor didn't call Friday.

All went well overall yesterday. Anti-nausea & pain meds helped but it seemed that after having a rough morning, the rest of the day went much better. Most importantly, I passed the "test" in the time allowed so that is another thing to mark off my list. It worked well to rest at my sister's house for a few hours before everyone came, and the visit was so nice in the evening!

Today I am doing pretty well, too, although my lower abdomen is hurting. I am getting frustrated with that--I think that I could be gaining faster if that didn't slow me down. I generally haven't been taking any pain meds or anti-nausea meds regularly--just one every few days if I need it. I walked a little farther today and I just love this spring weather we are getting!

Big day

Today is going to be a big day so I have been laying pretty low this morning. I have my computer course to take today in Sioux City. It can take up to 3 hours. After that I will go rest at my sister's house for a few hours. This evening my family will be meeting at her house to welcome and visit a cousin and his wife from Michigan. That should be fun if I can make it through. I am looking forward to seeing them. My parents will be picking up our kids after school and bringing them there.

I continue to have concerns about the direction things are going. Today I am a little more nauseated, but that continues to go up and down. My ears are ringing louder. I continue to have times that my lower abdomin is quite painful but I hope that will start improving. God is in control, and we continue just living one day at a time.

ct scan & more. .

I had the ct scan done this morning and we overnighted it to my neurosurgeon. I am so thankful for the doctors and nurses at the RV clinic & hospital--they have been so helpful and kind. My guess is that the ns or nurse will call on Friday since he is in surgery on Thursdays. We'll see.

My body continues to strengthen. Although I am incredibly weak I can really see progress in that area. I actually went to the office twice today for short times plus the ct scan. Now I am pretty tired and even took a short nap, which is rather uncommon for me. I am getting out more, though, and even drove both times to the office. It is rather scary to drive again--I can't remember how long it has been! Tomorrow is my continuing ed computer course in Sioux City. I am a litte nervous about how that will go but it will be nice to have it done.

New hair :)

I survived my trip to Sioux City and I have hair! :) Everything really went well until the trip home. I went to the "wig place" and have a nice new "do" and we even went out for supper as a family for the first time in a long time--even though we ate at about 3:30. The trip home was a little rough but I am doing better this morning.

I went to our office for a little bit this morning and now am exhausted so my activity for the rest of the day will be pretty limited. That's ok.

My ns office called me back and I need to have another ct scan done here, which I will work on scheduling. We continue to pray that I will be ok.

Today

Today I am going to Sioux City because I qualify, due to my medical condition, for a free wig. So next time you see me maybe I will have hair! This will be a big day out for me! However, this will be a practice run for me because on Thursday I have to take a continuing ed computer course in Sioux City to maintain my license. I only have a 3 month window to take this so I decided that taking it early just in case would be wise. Then next week I have a compliance course in Sioux Falls that is required once a year. I could take that next week or in May but again trying to get things done "just in case." So hopefully my body and my mind are ready for a few challenges!

Blessed Easter

I hope everyone was able to celebrate the resurrection of our Lord! I was able to attend church both times today and enjoyed a great meal with most of my family.

ok

I continue to not feel so great and not sure what the problem is. The nausea seems to have increased a little again and I am just a little "yuck." Shots of fear run through me so I am not talking about it (please don't ask us right now) or allowing myself to think about it. My neck is getting a little sore again and my stomach can be quite painful at times. I am continuing to get out a little more, and attended our Good Friday service last night. I am getting a little stronger. I wonder what the Lord has in store for me?

Thank you

I want to thank everyone again. How overwhelming and humbling to know that many people are reading this blog and even more importantly, praying for my family and I! We are just amazed, grateful and humbled by the support that so many have shown us through prayers, bringing so many meals, visiting, sending flowers and many other gifts and encouraging words. I have received so many encouraging cards and emails as well as very encouraging comments on this blog.

The Lord has given us a difficult path to follow but we are thankful and grateful for the provisions that He has given us along the way. We have been incredibly blessed by support by so many friends, relatives and through people that we don't know. I wish I could thank each one of you individually for your kindness to us and even more importantly for your prayers. Since I can't do that, please know that I really appreciate every single one of you!

Now to answer how I am doing. It seems that I have a few pretty good days and then a few that I don't feel as well. Yesterday and today haven't been as great. I suspect that might just happen as I continue to move forward, but I think I am still going forward. I continue to really try to focus on appreciating the moment and day that I am in and I don't let myself dwell much on the future because that is rather daunting. I have been able to get out a little more and that is a blessing. Small things really tickle me! :)

Musical and 2 more weeks. . .

I think I turned another corner yesterday in the right direction. I have been able to reduce my pain meds quite a bit and am feeling better! I still have a long ways to go, but each little improvement seems like such a milestone!

Yesterday I was able to go to Tanner's musical and it was awesome. I was so proud of him and all the kids and so very, very thankful that I was able to attend. I will admit that it was exhausting and I'm not moving much this morning, but that's ok.

I am feeling very hopeful that this most recently surgery will "work." However, the next 2 weeks seem critical to me. The first shunt I felt very good but started getting a glimmer of a headache at about 3-4 weeks post surgery. I was three weeks post surgery on Monday and am still doing well and feeling that if I can get another 2 weeks of feeling good behind me that it is more likely that this will be a longer-lasting fix. The doctor said I really needed to get 4-6 months to feel that I was going to be relieved indefinitely so I know that I won't be out of the woods yet in two weeks. I will have more confidence in it, though, and will feel a little more hopeful about making plans beyond the day I am in.

The ringing in my ears and occasional abdominal pain continue to bother me.

Church & Three Weeks

I made it to church last night and what a blessing! I think I cried through nearly half of it. We started with a song service and sang "Great is thy Faithfulness" and "What a Friend we have in Jesus" and then to top it off my favorite "When Peace Like a River". I hadn't thought of the emotions of going until we started singing and then I couldn't shut off the faucet. :) Until the privilege of worshipping together is taken away I think you often don't realize what a privilege it is. Enjoy and appreciate the privilege!

By the time the service was done I was pretty tired, but it was very well worth the tiredness. Tuesday night Tanner is in a musical and I hope to attend that as well.

Today it has been 3 weeks since my most recent surgery. This is a time of concern because I did really well for about 3-4 weeks after my first shunt was placed before I started going downhill. Please continue to pray that I continue to improve and not have a recurrence. Thanks! :)

Snowy day!

It is sad to say that it is a snowy day in April, but the good thing is it can't last long. I had hoped to attend church this morning but it was cancelled due to weather so we are having a quiet day at home. Maybe tonight?

Yesterday was a difficult day. I became more nauseated and was felt "headachey". Terrifying! Today I am feeling better--for which we are thankful. This is the second time since my most recent surgery that I have had a day like that when a storm was moving in so I am beginning to wonder if that is affecting me. We are going to start tracking barometric pressure for a while and see what we find.

I want to just mention again that I appreciate so much the support and kindness that so many have shown our family. Thank you! I pray that each of you enjoy a rich sabbath blessing.

Quick update

More of the same today but I think the nausea is gradually improving! The spring weather is so wonderful--hard to believe we are supposed to get around 14 inches of snow tomorrow! I can't say I am too ready for that!

My ears are continuing to ring and sometimes seem like it is getting a little louder. That by itself is something I can easily deal with but it does really make me nervous. That has just never been a good sign for me--but the headaches are still gone so I need to rest in that. Most of the time I can do that but I do have moments of sheer terror, wondering how I could live in that headache again.

Another day. . .

Today has really been more of the same. It seems that the pain in my lower abdomin is a little more frequent and stronger, but I really think that will go away with time. The nausea is still bothering me but not quite as much today. I can tell that I am getting better, though, because I am starting to think more about things--like the office. I am not nearly well enough to get back into the swing of things but yet it is bothering me that I am not doing all the things that I normally do both at home and at work. Last night I tried to iron a couple things and pretty much layed me out flat the rest of the night--miserable. I thought that would be a non-strenous job! :)

I would really enjoy visitors if anyone has a few extra minutes in their days ahead. So far I am not able to do much yet but my mind is working much better which makes it more difficult to be here by myself so much of the time.

Better

I am feeling better again and am so thankful. The nausea has continued to plague me again but whatever struck Sunday evening seems to have ebbed away. I have been taking it very easy, though, and not doing my normal walking through the house and little exercises that I had started doing a few days before. Maybe my body needs a little more time before it is ready for that. It is always a fine line between how much to rest and how much to push to start strengthening again, but I am erring in the rest side again for a short time.