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.