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!

11 comments:

  1. I just have my Mother in Law keep making me little Beanie hats. I will be going in March for a revision, and am having lots of bad days right now. I did find out however that the closer to sea level, the better I feel! too bad I livein the foothills, 2 hours away from the ocean. lol.
    I am praying for you! hope you get some relief from the pain!

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  2. So glad to see you on FB today. Know that you're always in my thoughts and prayers!
    Psalms 28:6-7 Blessed be the LORD, because he hath heard the voice of my supplications. The LORD is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him.
    Prayer Bears
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  3. Praying!
    Isaiah 26:3-4 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength.
    Prayer Bears
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  4. What words of comfort! Praying!
    John 14:1-4: Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.
    Prayer Bears
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  5. Know that you're always in my thoughts and prayers!
    I Corinthians 15:54-57 So when this corruptible shall have put on incorruption, and this mortal shall have put on immortality, then shall be brought to pass the saying that is written, Death is swallowed up in victory. O death, where is thy sting? O grave, where is thy victory? The sting of death is sin; and the strength of sin is the law. But thanks be to God, which giveth us the victory through our Lord Jesus Christ.
    Prayer Bears
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  6. Praying right now!
    Isaiah 43:1-3a But now thus saith the LORD that created thee, O Jacob, and he that formed thee, O Israel, Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the LORD thy God, the Holy One of Israel, thy Saviour...
    Prayer Bears
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  7. Praying!
    Psalm 31:9-10, 14-15a Have mercy upon me, O LORD, for I am in trouble: mine eye is consumed with grief, yea, my soul and my belly. For my life is spent with grief, and my years with sighing: my strength faileth because of mine iniquity, and my bones are consumed...But I trusted in thee, O LORD: I said, Thou art my God. My times are in thy hand:
    Prayer Bears
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  8. Continuing to lift up prayers!
    Psalm 31:19-21 Oh how great is thy goodness, which thou hast laid up for them that fear thee; which thou hast wrought for them that trust in thee before the sons of men! Thou shalt hide them in the secret of thy presence...thou shalt keep them secretly in a pavilion...Blessed be the LORD: for he hath shewed me his marvellous kindness in a strong city.
    Prayer Bears
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  9. Know that I'm always here praying!
    Psalm 34:15, 17-18: The eyes of the LORD are upon the righteous, and his ears are open unto their cry. The righteous cry, and the LORD heareth, and delivereth them out of all their troubles. The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit.
    Prayer Bears
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  10. Know I'm here praying!
    1 Peter 1:3-5 Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you, Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.
    Prayer Bears
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  11. Continuing to lift up prayers!
    Isaiah 53:3-5: He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not. Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.
    Prayer Bears
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