Tuesday, December 28, 2010

A long 6 months!

It has been a long time since my last post. I have had a surgery to remove my VP shunt, and I am doing well. Just been getting headaches here and there, and I seem to have had a flu-like virus and now it seems a cold is starting. My immune system is so compromised.
Noah has been playing football and until November was doing really well. He however became very ill in early Nov. and is continuing to have some issues. Dec 2, they actually admitted him to the hospital for 4 days in order to run tests and try and figure out what is going on. They tested him for every kind of cancer that there is as well as many other diseases, viruses, and bacterias. So far, praise the Lord, they have all come back negative. We saw an infectious disease specialist, and a rheumatologist. The rheumatologist found there was no arthritis in any of his joints, and that has been the chief complaint. He has had abdominal pain on his left side up under his ribs. When she was checking all of his joints, she found another really tender spot on the right side. Her thought is to have that checked out as well. Just to be sure. We are seeing him improve, but it is a very slow process.
Family drama is still going on. While Noah was in the hospital, his brother called Dan, and proceeded to "chew" him out on the phone...like that was an appropriate time. Dan tried to explain that the very day Noah was admitted, both of our vehicles batteries died and needed replaced. Like we didn't have enough stress. We are still not sure if we are going to celebrate Christmas with his side or not. Personally, I'd rather not. It will just be stressful on everyone and it is never pleasant. Not sure if I want my kids to be exposed to that kind of stuff.
Samuel was doing really well and then last night the "bug" got him. He has a sore throat, and really bad headache. It always concerns me when either of my kids get a headache. That "unknown" genetic factor always pops into my head...have I passed down my disease to them? I pray it never happens, but it is always there.
Dan will be starting a new job January 4th. He will be an inside sales rep for the same company he has been with for almost 14years. January will be the hardest because he will only get paid on the 7th and the 31st. Not sure how we are going to pay the bills, but I am sure God has that covered. We both felt that this would be a great opportunity for Dan. He will be salaried, and instead of incentive production checks every 3 months, he will get profit sharing checks, every 3 months, which he has been guaranteed a certain amount in his contract. His hours will change and I think it is going to work out so well for our family. Dan will get to see the kids before his day starts. We will be able to have breakfast together each morning. Our goal is to have breakfast and a devotional to start our day together each day. I am praying that this change in our routine will be a smooth transition for all of us. It is going to be different, but I think in the long run, it will be better for all of us.
That is about all for now. I just needed to write something...I am having bouts of depression that grows stronger each day. I know it is from not feeling well, and growing oh, so tired of that. So, I write to keep my mind busy. Working on things to keep my hands and mind busy as well. Please pray for our family in the coming weeks as we adjust and work together in the changes we are facing.

Monday, June 14, 2010

Family drama!!!!!!!!!!!!!!!!!! STILL!!!!!!!!!!!!!!!!!! With some families, you'd be better off alone. Would seriously love to move somewhere that we don't know anyone.

Friday, June 4, 2010

This disease...UGH!

This disease is such an interruption that people don't understand. I miss out on a lot of things that I would love to participate in. On Wednesday, I was supposed to attend a football moms meeting. Well, we had thunderstorms and tornado warnings, so that means terrible barometric pressure readings. That in turn means I am sick with terrible headaches. I was so upset! You know sometimes, I just want to be a normal mom that can do the things the other moms do. I know the other moms wonder why I am not helping with things and where I am and that alienates me from them. No wonder when I do see the other moms they just give me that look. They don't understand. I hate this disease! I was feeling better this morning, but with the heat and humidity, I am getting a headache that feels like a big one. And of course with the headache, I am having lots of nausea so I can't eat which means that I am not losing weight. It has slowed dramatically, and that frustrates me. Just lots frustrating me right now.
Prayers for Noah. They found something in his labs he had done. It may be something minor that would require several months of medicine, or something more. Wait and see.

Tuesday, May 25, 2010

Still here.

i haven't updated due to my vision being so bad. i haven't been able to do very much reading. i did start a new book for casual reading. it is called "7 things he'll never tell you, but you need to know" by dr kevin leman. so far it is really good.
i am still contemplating the scarf covering my head at church. would that bring honor to dan? would that bring more honor to God? is it the right thing to do? i don't know. i need more scripture on it to be able to make my decision and i need to find out dan's opinion of it.
we are still trying to get my meds regulated. i am only sleeping 2-3 hrs a day. i have a headache but not terrible, but i feel terrible. i am sick to my stomach, i can never get comfortable, i just feel crummy. i did start on the glucophage, folic acid, b6, and b12. i am not diabetic, but it helps with my pcos, metabolic syndrome, and insulin resistance. in a week, i have lost 13 lbs. i have a long way to go, but i have made a great start. i am slowly getting into the habit of the food program. i pray that as i get feeling better, i will be able to lose all the weight that i have always tried to lose, but have never been able to.
i am going to try to get some reading done in the next couple of days. i am getting tires for my car tomorrow.
noah is going to try and find ways to raise money for his trip in november. i am still excited for him. i am so hopeful that he can raise the money to go. a youth leadership forum on law and forensics. how cool is that!!!! to go to dc and get to sit in on sessions of congress, supreme court session, work with prominent dc lawyers, be taught by professors of prestigious universities. he would get to do all of that for 1 week. there is a top forensic scientist that is putting together a whole mock trial project where he will be the star witness and the kids will get to question him and i just think that would be the coolest. i am not sure how we are going to come up with the money. think he is going to send a letter to friends and family asking for odd jobs to make the money. i sure hope he can do it.
well, i am going to take all of my meds and see if i can get any sleep.

Thursday, May 20, 2010

Help Meet

I started a new devotional today "Created to Be His Help Meet" by Debi Pearl. I just want to use this blog to journal my thougts and see if it helps to work out any "kinks" I might run across in my studies.

First, let me say that although I like Debi Pearl, there has yet to be an author that I 100% agree with everything they say. Most of us are that way. We like an author/minister/layperson, but we don't agree 100% with them on 100% of what they say. That is completely ok, we are human.

I know we all(those of us married) think we have the very best guy out there. We found Mr Right/Wonderful/Perfect/you fill in your own. However, every husband sins, and every husband is born into this world a sinner. They make mistakes,(try telling this to a newlywed :-)), and you'll get "no he doesn't." And then in that dreamy tone you'll get, "he's perfect!" And at that...you've lost her. She will be off in her la-la land of perfectness. After that "perfectness" period, it will start taking conscious efforts to make a marriage work. You will need to watch the tone of your voice, how you react, what you do when you something doesn't go as planned. This is where the work comes in on both parties, the one reacting and the one being reacted upon.

The points in this chapter that hit home were the following:

1-Do you wake each morning to make your husband happy and blessed, to serve him to the best of your ability? Are you engaged in active goodwill toward him?
*When you help your mate, you help Christ. God was the one that commissioned man with a specific purpose and designed a woman to be his help meet. When you honor your husband, you honor God. When we serve our husband, we serve God. But it also works in the fact of when we dishonor our mate, we dishonor God.

2-Is it your nature to be your husbands helper! That is why we were made.

3-To covet the role of leadership is to covet something that will not make God, you, or your man happy.
*"But she that is married careth for the things of this world, how she may please her husband." I Corinthians 7:34

4-The role of being a perfectly fit helper does not make one inferior to the leader.
*"There is no loss of dignity in subordination when it serves a higher purpose. God made you to be a help meet to your husband so you can bolster him making him more productive and efficient at whatever he chooses to do." You're NOT on the board with an = vote. You really have no authority to make decisions, or even set the agenda of your life. However, if your husband can trust you, you can be involved in all of that if HE chooses to let you. YOU have to let HIM lead.

"A virtuous woman is a crown to her husband." Proverbs 12:4

"For the man is not of the woman; but the woman of the man. Neither was the man created for the woman; but the woman for the man." I Cor 11:8-9
In reading the verses surrounding these 2 verses, I came across something that has me thinking. Verses 3-7 talks about the covering of the head. This subject has become one of interest to me in recent months. Even though my hair is getting longer now, I find it interesting where it talks about "the woman ought to have a sign of authority on her head."(verse 10). I have seen in my brothers pictures, how the women in the Moldovan church use a lace scarf to cover their head when in the sanctuary of the church or in a "sanctuary" setting. I have been really thinking about this. Is this a sign of honor to her husband, which as in the reading today, is honoring her Lord? Maybe this is something that I should be doing. Is this a matter that should be discussed with my husband first? Is this something that I should do, even though I have just past shoulder length hair? Is this something that should be done whether or not my church agrees with it? I have a friend, that I love dearly, and her and her girls all wear head-coverings during all of their activities and at church, and I always thought how much I admire that. To me it is a symbol of service and honor. I always thing how proud her husband must be to have her do this. Now I don't know that she does it just to honor him, but it seems to me that it would go back to verse 10. I think I am going to have a talk with her about this subject and see what she says.

I still have to do the workbook portion of the devotion, but with this much info, I am thinking book and the "Time to Consider" page one day and then the workbook the next. We'll see how it goes.

Friday, May 7, 2010

I'm Back!!!

It has been a long time since I have been on here, I had my surgery and had my 2nd shunt placed. I am a rare patient since I have 2 working shunts. There aren't many of us that have 2. The surgery went really good. Had issues with the on-call dr and a couple of nurses I had. No one would give me any pain meds after the surgery. Even in recovery, the anesthesiologist wouldn't give me any. I have had meds in recovery before, but not with this dr. I was out of surgery about 4pm and to my room by 5pm, but I never received any meds until 7:30. I had not been given any of my daily meds until 1:30am. I couldn't believe that they wouldn't even give me my daily meds. I had brought all my meds from home, so I took some pain meds that I had in my bag.
( finally went to sleep about 2:30am, Then, at 3:30am the fire alarm went off. All the doors started slamming shut, people were yelling, and we didn't know what was going on, We didn't find out until the next morning that it was a fire drill...no fire, just a drill...AT 3:30 IN THE MORNING!!!! I was able to be discharged that evening. Thank goodness!
Dan had surgery on his knee. He completely tore the ACL and the MCL was torn, but not enough to warrant rebuilding it. He was back to work in 3 days and off crutches. He is doing really well right now. Physical therapy is pleased with the progress he is making.
Dans dad passed away 2 weeks ago today. He had been in OSU for 8 days and we were told that we could shut the ventillator off or have a trach put in and then he live in a nursing home. The boys decided to turn the vent off. After that, it has been completely crazy. A couple of brothers are just all about the stuff they can get, the will hasn't been found, there is a life insurance policy that no one knows who is the beneficiary. Just crazy. They need to get a lawyer and won't. Dan's mom is also butting in where she doesn't belong. I always liked her until now. She has butted in and just been a pain. Right now, I don't even want to talk to her or see her. So angry with what is going on right now.
Health wise, I have had a terrible headache for a week now. The neuro NP thinks it is a cluster migraine. She changed my meds and added some to see if it would help...it didn't, So have to call her tomorrow and see what she says, I don't care what we have to do to get rid of them, lets just do it, I was also informed today that my c peptides were high. That means that my body is not using insulin properly and that isulin is being stored in my body instead of being used. He is going to fax my PCP a recommended dose of glucophage and metanz and maybe something else. I will have to wait and see. But that does explain why I haven't been able to lose any weight. We found out a couple of years agp that when I took the glucophage and metanx, I lost a lot of weight, I am looking forward to doing that.
It is 3:15am, I need to go to sleep. I hope that I can.

Friday, February 12, 2010

End of my rope!

Friday Feb 12th~
Today I went to the neurologist. The shuntogram was normal, opening pressure of the spinal tap was high, optic nerves are red and swollen, and pain is uncontrollable. So, here is what he is thinking. #1-The shunt is working, and something else is going on. He wants me to have another spinal tap, and to see a dr at Ohio State University for a 2nd opinion consult. He is calling this dr personally. He wants to rule anything else out. The shunt is set on the lowest setting so we can't adjust it down anymore. Or-#2-the shunt is not working completely and fluid is building up because it is only pumping part time.
Here is how I feel about it. I have been in pain for almost 8 weeks. It is probably some of the worst pain I have been in since being dx'd in 2005. We usually guage how bad the h/a is by where it is on my face. With a high pressure h/a the pain usually starts in the back of my head and comes up and across the top and down my face. Usually when it gets to my upper lip, is when we know I need to go to the ER. Well, the pain has been down into my chin and all in my gums for about 4 weeks. I have been in the ER 2 times, and each time they gave me dilaudid, zofran, phenrgan, demerol, and toradol. And each time I left feeling like I did when I came in. I am so frustrated with everyone and everything right now. I HATE THIS DISEASE!!!!! I hate it that I feel like crap. I am tired of being strong and positive all the time. I am so tired of hurting. I am tired of having to pretend everything is ok. I am just tired. My body is tired and my mind is tired. I am not sleeping but just an hour or 2 at night.
Sat Feb 13~
Today was the same as the last 8 weeks...full of pain and nausea. I HAD to get groceries, so Dan and I went into town, Samuel went to my parents, Noah stayed home and got a few chores done.
Dan and I got groceries for the next month. He is off on Monday, so we are going to make 30 meals and put them in the freezer. I felt horrible, but I had to get this done. It did make me feel really good when I was able to buy everything we need for 4 weeks for right at $350. That is $82 a week. This included all food for the month, personal items, and paper goods. Not bad for a family of 4. Last month with what we saved on our grocery bill, I was able to pay off one of our bills. It wasn't very big, but it was one that we were making payments on. This month I'll have to see about paying off another bill. I really saw a huge difference with doing the 30 meals last month. There was less stress in the house, with me sick the boys were able to just pull something out of the freezer and we had a decent meal, not hot dogs or pizza. I did recipes that were laid out in a book for me last month. This month, I am using my own recipes. So, we'll see how it goes.
I found a really great deal this week. I make all of our bread now and I do it all by hand. I only have a handheld mixer, so any bread dough, pizza dough, cookie dough and all other things that get mixed, I do by hand. Sometimes, when I am feeling bad, I have to have Dan or one of the boys do it. Well, the other day I got my Kohl's ad in the mail. It had the pull off sticker on front to see what my savings would be. I got the 30% off. This is only like the 3rd or 4th time getting 30%. I was looking thru the ad and saw a kitchen aid mixer on sale. So I started checking into stand mixers and what kinds of prices were on them. I found a great deal. The artisan kitchen aid was on sale. It has a bigger bowl and motor. Regular price was $359.99, it was on sale for $299.99. I got 30% off of that, then I get a $30 rebate, $40 Kohl's cash back, no shipping charge and I ended up paying around $140 for the mixer. I saved $220 off the original price. I am so excited!!! I can't wait to get it and start using it. It is going to make my life so much easier. I wasn't going to get it, but Dan said that it isn't often that I'd find it on sale, with a rebate, with 30%off, and with Kohl's cash, so I should get it. I have wanted one for a long time, but have never had the money to get one and I always made due with what I had.
I am going to try and get some sleep. I have a feeling this is going to be a very long night. Keep those prayers coming!

Thursday, February 11, 2010

Today the neurosurgeon's MA called me back. I am scheduled to meet with him in the morning to discuss what is next and how we are going to proceed. She said that even though the tubing is clear, the shunt could've stopped working. He just wanted to make sure that it wasn't just the tubing clogged that was causing the problem. If it was the tubing that was clogged, then he could've just replaced that. So, tomorrow I will find out what is the plan.
I am scared about having another shunt put in, but I know that I have to do whatever it takes to save my vision. My hair is finally long enough to pull into a decent ponytail. I am not being vain, but I really don't want to lose my hair again. But, if I do, I will put on a smile and act like it doesn't bother me and everything is fine.
I am going to try and get my months grocery list done so I can get the groceries tomorrow. I am hoping to cook all day either Saturday or Monday when Dan is here so he can help. It is easier on me when he helps.
Noah was supposed to have Monday off, but since they have used all or almost all of their snow days, they are going to make one up on Monday. I would rather him have to go to school on President's Day than to have to go further into summer. He has been home all week because of all the beautiful snow we had fall.

Tuesday, February 9, 2010

Where we are at

Since my last post, several things have happened. After being sent home from the ER, on Monday morning, I called my dr and they had scheduled me for a spinal tap late that morning, 11am. So, I went and had it done. I went by myself, my dad drove me to the hospital but waited in the waiting area. I have Noah's iPod and had it set to some worship music that I could concentrate on. The dr came in and with the nurse they were wonderful, which I love Dr H anyway. He has done several of my taps. He is also the one that was supposed to do one with my LP shunt and he called me the morning of and told me that I should probably have the specialized spinal tap because of the shunt and tubing in there. He said that he could probably do it, but his pride wasn't worth hitting the shunt or the catheter and causing more trouble. I appreciated the fact that he was able to say no, he didn't feel comfortable with doing it. He is always so great. He is very caring. If he hits a nerve, he stops and takes a break. If I am hurting and not numb enough, he gives another shot. He is the best anesthesilolgist I have ever had.

Anyway, back to the tap. I asked if I could play my music and use that as my focus. He said that would be great. I was listening to worship songs and doing ok with the procedure. Then, Dr H started having trouble because of scar tissue. He couldn't get the needle in place. About that time, the song "He Leadeth Me" came on. I was focusing on those words more than I ever had in my life. I have heard, read, or sung those words thousands of times, but they never hit me more that they did this particular day. Here are the words.

He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me.

He leadeth me, He leadeth me,
By His own hand He leadeth me;
His faithful foll’wer I would be,
For by His hand He leadeth me.

Sometimes ’mid scenes of deepest gloom,
Sometimes where Eden’s bowers bloom,
By waters still, o’er troubled sea,
Still ’tis His hand that leadeth me.

Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me.

And when my task on earth is done,
When by Thy grace the vict’ry’s won,
E’en death’s cold wave I will not flee,
Since God through Jordan leadeth me.

Now the verse that really spoke to me~
Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me.

First of all I have to place my hand in His. Then we need to take what life gives us and not murmur or complain. We need to be content whatever our lot in life. And here is the best part Since 'tis MY GOD that leadeth me. He is my God. It is personal, it is intimate, it is right there and He is MINE! Isn't that just amazing!! I love the fact that He makes it so personal.

Now like I was saying, the dr was having trouble getting the needle in. When we got to this verse, when it came to the laset line "Since 'tis my God that leadeth me." the needle went right in and never popped back out, as they are prone to do sometimes. It was just another time God has shown me that even when I am having a spinal tap, an MRI, or any other test, He is there! He is mine to claim and He is there. I look at the part of my hand in His like a means of support as well as like a friend. Sometimes my husband will offer his hand if I need to walk up step or something. I think sometimes that is what God wants to be for us. Just that extra support to help us over hurdles that come in our life. He is there for us when things are a little more troublesome. And then I also see it as if 2 friends were walking, say on a beach. Just walking at the same pace, with one hand in the others. God is right there, just being a friend, but always ready to give us the support we need.

I have listened to this song many times since Monday. It was a terrible week. My opening pressure was just over 235(normal is 120-150). I am very sensitive to anything over 200. I then spent Tuesday night at the ER down at Mt Carmel hospital in Columbus. They gave me lots of meds and did a CT scan. I actually had a CT scan scheduled for Friday, but the ER dr said since I was there, they might as well do it. They had trouble with finding a vein for the IV. They had to do a deep vein stick. I have a terrible looking bruise because of it. I loved the drs at Mt Carmel. Both of them knew all about pseudotumor disease and knew what to do without me having to fight with them. I even had a 4th yr med student come in and ask if he could look in my eyes to see the optic nerves and what they look like when the pressure is high. He said the supervising dr told him to look at my eyes so he could see what someone with this rare disease looks like. I didn't mind the extra pain that he inflicted on me, because the more drs that know what it looks like, the more likely that patients will not have to wait years for a diagnosis. I know some that have had that happen and by the time someone gives the correct diagnosis, the paitent has permanently lost some vision. I tell myself, the more student drs and nurses that see this, the more awareness there will be.

I should've went to the ER on Saturday, but we were snowed in and had a level 3 snow emergency and no one was allowed on the roads. I am still hurting at a 9-10 level of pain. I am just loading up on meds. Today at 12:30, I am going in for a shuntogram. What it is~they will shave around the shunt and clean it. Then they insert a needle and take some spinal fluid off the brain. They then inject a dye into the shunt catheter and watch it drain and time how long it takes to drain. This test should tell us if the tubing is clogged or not. We are praying that we get some answers tomorrow. Dan and I have talked about it and decided that I can't go on living like this. I am not sleeping, having trouble eating, having some uncontrolled twitching, and with this pain, something has to be done. I feel like my shunt has quit. I guess I am just preparing myself incase that is what the problem is.

Didn't mean to write a book, just needed to vent a little and document some things.

Monday, February 1, 2010

Rough Week

Well, Sunday evening I ended up in the ER because the pain from the headache just got too bad. The dr gave me several shot combinations and nothing really seemed to work. So, he talked to me about a spinal tap, which is what Dan and I had already talked about. We came to the conclusion that a tap is probably what I need to just go ahead and get so we know. A tap is the only way to tell what the pressure is. I have pretty much resigned myself to the fact that I will need to have my shunt replaced. And that is ok. I am ok with having it redone, losing my hair, and all that comes with having the surgery. I also just want to get it over with. Our youth pastor's wife said she would take some family pictures before I had to have surgery. We then talked about after surgery taking some pictures to just kind of document what it is like. So, I will probably have a spinal tap today or tomorrow. I'l like to have it today and get it over with.

One thing I am really struggling with is why is it every time that I feel God calling me to do something and I say yes, then I get sick. I don't understand. If God wants me to do something then why is he allowing me to get sick. My girls class is supposed to start next Sunday night, and I am so excited about it, but now I am just wondering if I will be able to do it. This is something that has been on my heart for months. I am going to do it no matter how I feel. Dan and I had a long talk about this and he said maybe I am supposed to go ahead and do the class because God is wanting to use me to be an example to others. That if I can do it even in the condition that I am in, then maybe others would be willing to step out on faith and do something that God is calling them to do. I don't know. I just know that it is very frustrating.

One thing really made my day yesterday. There is a young lady in our church named Angeline. She is a young teen about Noah's age. She emailed me and told me that she was praying for me and was praying that I would feel better soon. How sweet is that? It made me cry to think that a young lady took the time to do that. It brings tears to my eyes now. Wow!!! What a young lady! She will never know how deeply that touched my heart.

Samuel was still up when I came home from the hospital. Dan had left to bring the boys home so he and they could get some sleep. My dad came and stayed with me and brought me home. Samuel was still up when I came in. He asked if there was anything that I needed. I told him that I was a bit hungry. He went in the kitchen and made me a chicken patty sandwich(and not in the microwave). Got me something to drink, and made sure I was comfy. He asked if he could lay in the other recliner and sleep, that way he could help me if he needed to. He is so sweet.

Noah has a research paper that he is doing in English Lit. They are studying the Great Depression. He did really good on his grades for the first half of the year. The 1st 9 weeks he made Merit Roll, and the 2nd 9 weeks he moved up to Honor Roll. We have a meeting in a couple of weeks with the community college. Noah has the opportunity to take some college courses over the rest of his high school career. He could graduate high school and be a sophomore in college. It is completely paid for~tuition, books, fees. The only thing that we'd be responsible for would be for getting him there for orientation and tests. The only thing he needs to do is take the compass test and then have his guidence counselor sign off on it. He has the GPA to do it. It would certainly give him a head start. We are praying that we make the right decisions for him. It seems odd when I think about where we are in our lives. Noah is halfway thru his freshman year and thinking and praying about what he wants to do with his life after high school~where God is leading him. He is such a remarkable young man.

I am hoping tomorrow to do a bit of sewing. I want to get some things done that I haven't been able to. I need to redo our wreath on our front door. I want to make an apron and a gardening apron with a front pocket. For the gardening one, I don't have a pattern, I am just going to "wing it". I can't sleep because of all the meds and the headache is just making it impossible.

Praying for a better day tomorrow. I really am looking at the positive in my disease. Attitude is everything and attitude is what keeps me grounded. God keeps me thru it all. I can always feel his presence like he has his arms wrapped around me and holding me thru it all. I don't know why I have this and why my family and I have to go thru this, but I do know, I don't want to miss an opportunity to use my illness as a way to glorify and praise God. I have this for a reason and I may never know why, but I do know that it is for a reason and I need to make sure that I use it to share Christ and let others know that without Christ, life isn't worth living. I need to hold tightly to Him in these times that I get so sick and remember when I am feeling good, I still need to cling to him.

Friday, January 29, 2010

The word of the day is Discouragment

Today was my appt with my opthalmologist appt. She said I have some swelling on my optic nerves. She wants to get me in to my neuosurgeon before Feb 12th. So, they went ahead and did a visual field and they are trying to get me in for a spinal tap early next week. She said we might as well get it all done while we are waiting to get in the the surgeon, because he would just want to get it all done anyway. So we might as well get them done now so that we won't have to wait after going to the surgeon's. So, I am tired and discouraged a bit today. Just feeling kind of out of it and numb. I am trying to be positive and keep a smile on my face, but right now it is time to let myself be discouraged and get back to life tomorrow.
Meds are kicking in and I am feeling kind of out of it. Please pray for my husband, Dan, and my boys, Noah and Samuel. This is always so hard on them.

Thursday, January 28, 2010

I must look up!!!

Sometimes I just want to find a deserted island and run away to it. Today was just on of those days that would've been great. I try so hard to be upbeat and cheerful, but today has really put me to the test. I have had a horrendous headache for a few weeks now. I have really tried to take care of myself, take my meds, and not do too much. However, nothing has helped. The scar on my chest is swollen and red and very tender to the touch. The tubing in my abdomen has become really painful. I have been on the diamox, but it causes kidney and bladder pain and infection. I try to take it as much as I can tolerate it. But there are some days when my body just needs a break from the horrible side effects of it. The neuro had me on wellbutrin to see if that would help with the headaches, and also a side effect would be to help me with my moods. We have seen no change with it, so I am weaning off of it. She put me on steroids to see if they will help with the headache. I have to take them for 9 days, and give her a call on the 9th day to let her know how I am doing. I am also no taking the imitrex anymore because we weren't seeing any difference when I had been taking it here in the last few weeks. I am still on the Neurotin(anti-seizure), tizanadine(muscle relaxer), trazedone(for sleep), and phenergan(anti-nausea). I am supposed to keep track of how many times that I vomit and we may add compazine to the mix. She did some labs today to check electrolytes, liver function, and to see if my white cell count is elevated. With the fevers, she is concerned that there is an infection somewhere. She is also concerned with the forgetfulness, dropping things, losing my words, mixing my words up(ie-instead of saying where's noah, I say woah neres. Sounds funny, but it really isn't). I try to laugh it off and say how silly that is, but inside it is really scary. I also am pretty good at spelling, but here lately, I can't even spell some of the easiest words, which is very frustrating to me. When I type and also when I write, I mix the letters up or they just don't come to me at all. I have actually misspelled my name a number of times in the last few weeks. We are praying that all of this stuff is just related to my headaches, but the neuro isn't completely sure. Some days, it is worse than others.
I have my visual field testing on Friday. And I also will have my optic nerves checked. I am trying to get into my neurosurgeon ASAP to see if the shunt is working or if it is even holding a setting. I hope that the setting has just not held and it just needs reset. But I also know that when he set it after the MRI, he said that sometimes the MRI will cause the shunt to malfunction. So, for now, it is a wait and see. Which we are used to.
Dan's knee was a little better, and now it is worse again. He has been going to physicalt therapy, doing all the things she asks him to do, and she thinks that something is definitely torn. She wantss him to get an MRI and see what is going on. He is in so much pain right now. He took a half day off today, so he could take me to the dr, and I think he was glad that he wasn't at work. Once we got home, he slept for the whole evening. He was hurting really bad and nothing seems to help. We have tried ice, heat, rubs, eucalyptus oil, hot baths, elevating it, and nothing relieves the pain. He is worried about me and with the knee pain, it is a bit much for him.
I don't understand why everytime that Dan and I try and do something at church, I get my headaches back, or get sick somehow. I hate it!!!!! I am trying to get everything done for the program that we are starting on Sunday nights, and it is going so slow right now. I am afraid that I am not going to be able to do it. I am trying to just give it all to God, but it is hard. I am so used to being active in church and I haven't been able to do very much the last few years, with the headache and surgeries. Now, I am so excited about this program, but I am so afraid of not being able to do it. I just don't understand. I know God could take this all away right now, but he doesn't and I don't understand. Today is one of those days that I wonder why someone that wants to work in ministry has such a difficult time, but then there are others that could and don't. Why can't they have this? I shouldn't even think those things, because I am so blessed. I have been so guilty today of not trusting and having faith. My faith seems so weak right now...I feel weak. Today is just one of those days filled with guilt, lonliness, self-pity, and just completly out of sorts. I wish I could sleep it all away, but I can't. I need to just pick myself up and go on with what life has for me. The verse we voted as our team verse for volleyball, my senior year, has been on my mind a lot lately. It is Colossians 1:29 "Whereunto I also labour, striving according to his working, which worketh in me mightily." We had a lot of great devotions surrounding this verse that year. I think it was the year we all took our team verse to heart and lived it. We went to state and won, went to regionals and won, and then went to nationals and came in 3rd. Not bad for a team from a school that had about 80-90 kids from K-12 grade. I had a ball that year, but it was one of the hardest years I had had up until then. You see, I had a terrible back injury. My vertebrae in my lower back had turned almost 360*. Had it turned anymore, I could've and most likely would've been paralyzed from the waist down. I had a great chiro that took me in and started therapy twice a day. He was able to get me thru reg season, state, and regionals. I think he about had a heart attack when I told him that we were going on to nationals. He gave strict instructions to me and my coach. I was allowed to go. During the first few hours at national, we were practicing and I went down. I had numbness in both legs. As I sat on the floor, I remember thining of that verse. A ref came over to me after I was sitting on the bench and began to talk to me. He was asking what was wrong with me and then he ask me to tell him what the verse reference was that was on my warm-up. I quoted it to him and then he asked me if I knew what it meant. I told him "no matter if I play or not, if we win or not, we have Christ that is working in us and in us mightily! We will never be losers if we allow that working to take place." I will never forget what he told me. He said "there are a lot of kids that I see wearing verse references on their clothes etc, but most of the time they couldn't open a Bible and find the verse, let alone share it completely memorized, and be able to explain what it mean to them." I have been really down over the whole memory loss issue, I used to be able to memorize chapters of the Bible, now I am lucky to remember a few verses. But one thing I do know, when the time comes that I need a verse, I may not remember it word for word, but God allows me to remember what I need at that time.
This disease has take a lot from me, it has give me a lot as well, but I have a God that is bigger than this disease. He may not take it from me, but he will get me thru it. He may not take me out of the valley, but he will give me glimpses of the mountaintop. He may not take me out of the shadows, but he will remind me that to have shadows, you need some light to make them. He may allow the suffering, but I know that one day there will be no more suffering. I may have rain in my life, but there is always the glimpse of a rainbow to get me thru. These are the things I must concentrate on...the good things that God gives us each day. Today it was windy, but boy was that sunshine wonderful! I must look up if I want to see any mountaintops. I must look up if I am to seek God in my pain. I must look up!

Tuesday, January 19, 2010

Here we go again...

I felt great yesterday. I should have known, a little too great. I had slept well Sunday night and felt very rested on Monday morning. I took the boys bowling and felt really good. When we got home, I rested and still felt good. Last night, Dan had open gym at church, so I went with him and the boys. Samuel and I walked laps and I was still feeling good. Came home, got ready for bed and still was feeling good. I seriously thought I was going to make a turn around in the headache deptartment. Then I woke up this morning. Horrible headache, blurred vision and nausea. I don't know what is going on. I am not sure if the shunt is malfunctioning, if the tubing is clogged or what. I just hurt. So, going to take some meds again and see how it goes today. If it gets much worse, I will have to go to the ER.

Sunday, January 17, 2010

Stilll lingering...

The headache is still lingering. I have been playing with my meds, but it looks like I am going to have to go back on the diamox, as much as I hate that. So, tomorrow...diamox to start my morning. At least I have phenergan to help with the nausea this time.
Samuel is spending the night with a friend and Noah is staying with his grandma. I am hoping to take some meds and just relax this evening. Samuel, Noah, and I are going bowling tomorrow. Then in a couple of weeks, we are taking the kids tubing at Mad River Mountain. Can't wait. Noah is wanting to try snowboarding. We'll see.
I am probably going to need to take Dan back to the dr on Tuesday morning. His knee is no better and actually, a bit worse. So, the dr will probably drain some of the fluid and then send him for an MRI. We are praying that nothing will need to be surgically repaired.

Thursday, January 14, 2010

Yesterday and today, I have had the headache increase. I am fearful that the shunt has malfunctioned, but hoping it just lost its setting. I am going to try and get in to the dr earlier than my planned appts. Pray that there is nothing wrong with it.

Tuesday, January 12, 2010

The post that I forgot in the drafts.

Last night, Dan was playing basketball with some teens at open gym. (He has been doing this at our church a few weeks now and loves it.) One of the teens went up to shoot the ball and Dan was behind him trying to block the shot. Somehow, Dan came down and the boy came down on top of Dan. It bent his left knee in toward his right knee. He then iced it for a bit and went back to playing P-I-G with some of the kids. He went to shoot the ball and heard a loud "POP". He said the next thing he saw was the ceiling lights. When he came home it was all swollen. So we elevated it, iced it, and took some Tylenol. This morning it was swollen worse, so we went to the doctor. The doctor said his ACL was fine, but the 2 ligaments on either side of his knee were probably torn. He also said that Dan has fluid in the joint and if it isn't better next week, he will have to drain it. He sent us for x-rays to make sure that nothing is fractured, for a knee brace, and a prescription. Dan is now in bed with his knee up and hopefully, sleeping.
Yesterday, I was able to get a lot done. I made 4 loaves of bread(2 for the freezer), 1 very large batch of cinnamon rolls(put some in the freezer), 3 loads of laundry, did some cleaning, worked with Samuel, and a few other odds and ends. I again didn't take all my meds yesterday and did fine until last night. I couldn't sleep, but was up at 4am. So, today, I am feeling a bit of a headache. I am taking some meds, but I am going to try and not take as many.
Tonight it is marinated flank steak, baked potatoes, corn on the cob(from our garden via the freezer), and homemade bread. After that maybe some games and/or a movie. Noha has exams tomorrow and Thursday. He isn't real concerned about them. Doesn't even want to study, but I told him he had too. He has mostly A's and a couple of B's and hasn't studied one time this year. He brought home a beautiful clock today that he had made in Industrial Arts. I will try to post pictures tonight or tomorrow.
Heard a great quote today. IF you are not happy with what you have. you will not be happy wih what you THINK you need~Socrates.

Monday, January 11, 2010

A Good Day

Today I have felt better than I have in weeks. I actually cut back on some of my meds yesterday. I think they are to blame for the unbelievable grogginess. I didn't take all of my meds at bedtime and I think that is why I haven't been able to function during the day, sleep til late, start waking up about 2 in the afternoon, and then being awake until 3 or 4 in the morning and then doing it all again the next day. So, I am going to try and limit my meds at bedtime for a few days and see how it goes.
Yesterday was my birthday. I felt ok for the first part of the day. Dan made pancakes for breakfast, but I was unable to eat them. Then for lunch we had meatloaf, mashed potatoes, mac and cheese. We then went to my moms for cake and pecan pie. I went to Sunday school and church in the am, but after a 4:30 meeting with the youth pastor, I was unable to stay for the evening service.
So far the month is going good with the no spending. Dan is the "bad" one:-) Mondays are the worst because he doesn't come home until around 8 or 9 pm. So, he kind of needs to eat before then. I was able to finish the once a month cooking on Saturday with Dan's help. Tonight was Beef enchiladas and rice. Not sure what we'll have tomorrow. Maybe Marinated Flank Steak...hmmm.
I am trying not to do too much today, even though I am feeling pretty good. I have done schoolwork with Samuel, done some laundry, and cleaned a little. I am going to make some bread in a bit. I would like to make some cinnamon rolls. We'll see how much I can get finished.
Samuel is once again trying to get a cold. He is still taking his elderberry and I think that is helping him from not getting really sick. Hopefully he will get better soon. He has just felt kind of crummy today. I almost wish he'd just get sick and get it over with. He just hasn't felt good for several days. He runs a fever off and on,, tired and has a runny nose. What we really need is some fresh air and sunshine. I'll have to see about getting him some vitamin D. He doesn't drink milk at all, so maybe that is something he needs.
He is really loving his guinea pig though! He has been very responsible with her. He named he Fluffy :-)

Wednesday, January 6, 2010

Another day!

Today was another day of illness. Samuel didn't feel well. Noah was ok and went to school after a 2hr delay. Even with Samuel sick, he checked on me a lot and also did laundry and his schoolwork. He is such a good helper and did a wonderful job doing laundry. He separated the clothes according to color and and type. He used warm water for whites, and cold for colors. I think he did 4 loads today...washed and dried.
Noah came home and helped hang some clothes, dishes, and helped with supper. When Dan came home, Noah brought him his plate and Dan was able to relax a bit before taking the boys to church.
My headaches are not getting any better. I am thinking that I am going to have to call the dr and see what she says. The headache is just not letting up. But, I will get thru it just like the other times. It just concerns me that something is wrong with the shunt. I am praying it is ok and it is just the weather.
Hoping to get the rest of my cooking done tomorrow. I just have a few dishes to put together and I am done for the month.
It is getting to be that time of year. I am getting all of our tax stuff together. We sure did donate a lot this past year. That tells me that we are getting the house cleaned out. I hope to do more of that this year. Hope to get rid of all our "clutter".
I am loving my Glo Bible! Very Cool! I think it will be the way that I can do my devotions, even when I am sick...even when my vision is bad. So thankful that I found it!

Chivalry and respect...a lost art.

Noah woke up this morning not feeling well and then disappointed because he didn't have a delay or a snow day. He went to school and they ended up coming home after an hour. The roads were getting worse and drifting and our county had a level 1 snow emergency. The school lost their phones and internet and were afraid of losing power too, so they sent the kids home. I was glad and so was Noah because his new cell phone, Alias 2, came today. So he spent the afternoon setting it up. It is a really cool phone. Dan and I got phones too. Not as cool as Noah's phone, but really nice ones. We are getting rid of our house phone and just having cells. I don't even know my number yet. The boys showed Dan all about his-how to get to the games, how to use the touchscreen, how to get to the texting, etc...a full "seminar".
Samuel had a bit of a meltdown because he doesn't have a cell phone. Dan and I told him that he was too young to have one. I think it is silly for kids to have them so young. No wonder kids are doing so poorly in English and Spelling. With texting they don't have to talk and with all of the shortened ways of spelling, they can't spell the right way. I so agree with my brother, kids and teens don't even know how to have a conversation anymore. There is no small talk, they can't even carry on a conversation for an extended amount of time. No wonder the divorce rate is so high in newly married couples. They text and e-mail for the entire time they date and then when they are married, they can't talk to each other.
This is one area that Dan and I have addressed with Noah. He is allowed to text his friends, but he has to talk and have conversations with us. Every once in a while, he will say "idk" and Dan will tell him that is not appropriate and he makes him say it again, the right way. When he asked a friend of his to go to homecoming, he was allowed to text her, but he also had to ask her and ask her dad, who happens to be our pastor;-) Dan is a real advocate for chivalry. He wants to teach our boys how to be godly men and respecting women. I am so proud of the father he is to our boys. When we go out as a family, we are always getting compliments for our boys. They hold doors open, help ladies with putting their bags in the car, they will play with kids they don't know and try and quiet them if they are crying. Both of them will make faces, and talk to them to try and calm them down, and it almost always works. Mothers often tell me at the grocery store that they appreciate the boys help. I understand how hard it is to shop and take care of an unhappy baby. I am thankful for a husband that is teaching our boys the lost "art" of respect.
Dan and I are starting a ministry at church for 4th-5th graders on Sunday nights. We are probably going to use the Keepers/Contenders books, as well as some others. Please pray that it goes well. This is Dan's first "teaching" position and he is a bit nervous. He was youth group leader at our other church and he taught the boys, but they were a bit older. He feels called to teach the chivalry/respect to the boys at our church. I am teaching the girls with my good friend Dawn H. It is really neat how God worked it out. I had never seen the Keepers/Contenders books. Dan and I sat down and made a list of all the things we wanted to teach and what hands-on things we wanted to do. When Dawn brought the books, she gave us each one to look at and I gave her the list. We both started laughing when we were looking over them because they were both the same. WOW! What a confirmation by God. I have a partner and several talented ladies to bring in and teach the girls some wonderful things. We will be hitting modesty, how to apply make-up to bring out the natural beauty, how to act like a lady, as well as keeping a home, sewing, cleaning, gardening, canning, etc. Dan doesn't have a partner yet, but we are praying that God will bring the right man beside Dan. He will be teaching respecting women, chivalry, manners and how to behave like men, car maintenance, woodworking, and tons of other things that young men should know. We will be memorizing scripture and doing Bible study with them. I ask that you pray that we will be able to do all that God has called us to do and that thru HIM this ministry will flourish.
I am trying to get thru one of the terrible headaches. It steadily worsened as Tuesday went on. By the time Dan was home, I needed to take some pain meds and go to bed. I probably should have went to the ER, but I just couldn't knowing what they would do to me. I am feeling a tad bit better, just can't sleep. I am hoping my last dose of meds will kick in and that I will be able to get some rest. I feel so useless when I get like this. I know that Satan is trying to discourage me and make me feel like this. I feel like a terrible wife and mother. The guilt sometimes is almost overwhelming. This too shall pass. My favorite verse has been on my mind today, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33. Looking for a brighter day tomorrow.

Sunday, January 3, 2010

A New Year!!

Happy New Year!!! I am trying something new this year. A friend on her blog "challenged" everyone to try and go 2 weeks or 1 month and not spend any money except for gas and bills. I talked to Dan and the boys and they said they were in for the "challenge". I got a book at the library called "Once-A-Month Cooking". I am going to try and do the one month. I picked what calendar I wanted to do and then made out my grocery list. I also made sure that I made a list for lunches and breakfasts. Noah and I went Friday and started my shopping. I only made it to one store before I was starting to get a heachache, so I had to come home before it got worse. I went back out on Saturday and went to Aldi(love that store) and Kroger. I was able to get everything that I needed. I still need to go to the Amish store and get some ham for lunches. I can get the same ham there for about $2/lb and at kroger it is $7. I can also get fresh Mozzarella for about $2/lb and it is the best mozz cheese. So on Monday, I am going to try and get in to town to get the final few things. For the month, I spent $449.84. That is all the groceries that I needed. I think next month I am going to make my own menu up and try and reduce the amount. I will spend Monday cooking everything and getting it in the freezer. Then each morning I will take something out for supper and thaw it and heat it. It will make it easier for Dan and the boys in case I am sick. I am praying that this will work for us. I think if nothing else, it will get me organized. I had been praying for God to show me a way to help with our budget...Thanks Lindsay!

Noah goes back to school on Monday. I am sad about it, but Samuel starts back as well, so that should make my day go quicker. I am so excited that Samuel has really gotten into reading. I have caught him several times over Christmas break, sitting and reading. We are noticing that he is reading signs and words on ads, more and more. I hope that he will stay excited about it.

Samuel got a guinea pig on Friday. It is really cute! Samuel paid for the cage and feed, and bedding and toys with his own money. My parents gave him a Petsmart gift card for him to go and pick one out. He first said he wanted to name it Bubbles, but then changed it to Fluffy. The first time he held it after he came home, his eyes got red and watery, and then he had welts on his arms where he held it. We think he is just allergic to the timothy hay. I pray he is not allergic to the pig. It would break his heart if he was.

I ordered new cell phones. I got a great deal thru Verizon. No activation fee and Dan and I got our phones for free. Noah was able to get the phone he wanted. We are going to get rid of our land line and just have cells. Dan will have to carry 2 phones-one for work and one for us. Noah will be able to call and text as much as he wants. Dan and I won't need to worry about using our minutes, which will be nice.

My headaches have been constantly at a 6-8 on a scale to 10. They seem to come almost every evening, and I usually get a fever with them. My fever is usually 99*-101*...just enough to make me miserable. I have several doctor's appts coming up. I am going to try and go to my family dr and have him check my kidneys and see if I have an infection. I have done the pink lemonade and will probably make some tomorrow. I think the infection just got too bad for the lemonade to fix. I also want to get my bloodwork done for the research doctor. Maybe I can get back on my glucophage and metanx. These made me feel better when I took them and was monitored. I am going to try and start taking the glucophage Monday and then get some metanx from my family dr. I hope that this helps. We are all going to try and eat healthier this year. We are cutting out a lot of the sugars and junk food.

I am going to let Samuel have my Facebook page. He loves the games and I am only going to use it to keep in touch with friends and family from out of state or very far away. I have felt that I need to cut out some of my computer stuff. I had fb, caringbridge, e-mail, and this blog. I am cutting out fb and caringbridge. I just really feel that these things are taking away from family time, and that is so much core important. In the time that it takes to write on caringbridge, and check out fb, I could play a game with my boys. Dan and I have been talking about how we want to cut out a lot of the tv and computer time. There are so many other things that are more important. God has really been working on my heart about this.

On the subject of eliminating "stuff" that takes away from family, I have begun to eliminate "stuff" that is just sitting around the house. The boys and I cleaned out our closets, and going thru our bedrooms, as well as other rooms. I am getting rid of dishes, pans, clothes, knick-knacks, and anything else that we don't need. Not only is it making our home more spacious, but it is going to someone that needs it more than us...not to mention a tax break. So in the next few weeks I am going to clean out all of the rooms and get rid of "things" around our house. I am hoping to get it so the house is not cluttered and easier to clean, so that when spring comes, and we put out our garden, I won't need to spend so much time in the house, but be able to work outside and help.

Anxious to see what the new year brings!