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!