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!

31 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!

    ReplyDelete
  2. Lifting up prayers!
    Psalm 17:6-7 I have called upon thee, for thou wilt hear me, O God: incline thine ear unto me, and hear my speech. Shew thy marvellous lovingkindness, O thou that savest by thy right hand them which put their trust in thee...
    Prayer Bears
    My email address

    ReplyDelete
  3. Praying right now!
    I Peter 1:23-25 Being born again, not of corruptible seed, but of incorruptible, by the word of God, which liveth and abideth for ever. For all flesh is as grass, and all the glory of man as the flower of grass. The grass withereth, and the flower thereof falleth away: But the word of the Lord endureth for ever. And this is the word which by the gospel is preached unto you.
    Prayer Bears
    My email address

    ReplyDelete
  4. Continuing to lift up prayer!
    Psalm 71:1-3 In thee, O LORD, do I put my trust: let me never be put to confusion. Deliver me in thy righteousness, and cause me to escape: incline thine ear unto me, and save me. Be thou my strong habitation, whereunto I may continually resort: thou hast given commandment to save me; for thou art my rock and my fortress.
    Prayer Bears
    My email address

    ReplyDelete
  5. Always praying!
    Psalm 71:14-16: But I will hope continually, and will yet praise thee more and more. My mouth shall shew forth thy righteousness and thy salvation all the day; for I know not the numbers thereof. I will go in the strength of the Lord GOD: I will make mention of thy righteousness, even of thine only.
    Prayer Bears
    My email address

    ReplyDelete
  6. 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
    My email address

    ReplyDelete
  7. Lifting up prayers!
    Psalms 28:8-9 The LORD is their strength, and he is the saving strength of his anointed. Save thy people, and bless thine inheritance: feed them also, and lift them up for ever.
    Prayer Bears
    My email address

    ReplyDelete
  8. Praying right now!
    Psalm 40:1-4a: I waited patiently for the LORD; and he inclined unto me, and heard my cry. He brought me up also out of an horrible pit, out of the miry clay, and set my feet upon a rock, and established my goings. And he hath put a new song in my mouth, even praise unto our God: many shall see it, and fear, and shall trust in the LORD. Blessed is that man that maketh the LORD his trust,
    Prayer Bears
    My email address

    ReplyDelete
  9. Know that you're always in my thoughts and prayers!
    Psalm 32:6-8 For this shall every one that is godly pray unto thee in a time when thou mayest be found : surely in the floods of great waters they shall not come nigh unto him. Thou art my hiding place; thou shalt preserve me from trouble; thou shalt compass me about with songs of deliverance. Selah. I will instruct thee and teach thee in the way which thou shalt go : I will guide thee with mine eye.
    Prayer Bears
    My email address

    ReplyDelete
  10. 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
    My email address

    ReplyDelete
  11. 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
    My email address

    ReplyDelete
  12. 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
    My email address

    ReplyDelete
  13. Lifting up prayers right now!
    Psalm 31:1-3 In thee, O LORD, do I put my trust; let me never be ashamed: deliver me in thy righteousness. Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me.
    Prayer Bears
    My email address

    ReplyDelete
  14. 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
    My email address

    ReplyDelete
  15. Praying in Seattle!
    I Peter 1:18-19 Forasmuch as ye know that ye were not redeemed with corruptible things, as silver and gold, from your vain conversation received by tradition from your fathers; But with the precious blood of Christ, as of a lamb without blemish and without spot
    Prayer Bears
    My email address

    ReplyDelete
  16. Continuing to lift up prayers!
    Psalm 31:5-8: Into thine hand I commit my spirit: thou hast redeemed me, O LORD God of truth...but I trust in the LORD. I will be glad and rejoice in thy mercy: for thou hast considered my trouble; thou hast known my soul in adversities; And hast not shut me up into the hand of the enemy: thou hast set my feet in a large room.
    Prayer Bears
    My email address

    ReplyDelete
  17. 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
    My email address

    ReplyDelete
  18. 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
    My email address

    ReplyDelete
  19. Continuing to lift up prayers!
    Psalm 34:1-4 I will bless the LORD at all times: his praise shall continually be in my mouth. My soul shall make her boast in the LORD: the humble shall hear thereof, and be glad. O magnify the LORD with me, and let us exalt his name together. I sought the LORD, and he heard me, and delivered me from all my fears.
    Prayer Bears
    My email address

    ReplyDelete
  20. Praying in Seattle!
    Psalm 34:5-8 They looked unto him, and were lightened: and their faces were not ashamed. This poor man cried, and the LORD heard him, and saved him out of all his troubles. The angel of the LORD encampeth round about them that fear him, and delivereth them. O taste and see that the LORD is good: blessed is the man that trusteth in him.
    Prayer Bears
    My email address

    ReplyDelete
  21. Praying!
    Psalm 50:15:And call upon me in the day of trouble: I will deliver thee, and thou shalt glorify me.
    Prayer Bears
    My email address

    ReplyDelete
  22. 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
    My email address

    ReplyDelete
  23. Praying as always!
    Psalm 34:19-20, 22 Many are the afflictions of the righteous: but the LORD delivereth him out of them all. He keepeth all his bones: not one of them is broken...The LORD redeemeth the soul of his servants: and none of them that trust in him shall be desolate
    Prayer Bears
    My email address

    ReplyDelete
  24. 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
    My email address

    ReplyDelete
  25. Stopping by to let you know I'm still here, still praying!
    II Corinthians 12:8-10 For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
    Prayer Bears
    My email address

    ReplyDelete
  26. Continuing to pray!
    Romans 5:6-9 For when we were yet without strength, in due time Christ died for the ungodly. For scarcely for a righteous man will one die: yet peradventure for a good man some would even dare to die. But God commendeth his love toward us, in that, while we were yet sinners, Christ died for us. Much more then, being now justified by his blood, we shall be saved from wrath through him.
    Prayer Bears
    My email address

    ReplyDelete
  27. Lifting up prayers right now!
    Matthew 11:28-30: Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.
    Prayer Bears
    My email address

    ReplyDelete
  28. Praying as always!
    Galatians 4:3-6: Even so we, when we were children, were in bondage under the elements of the world: But when the fulness of the time was come, God sent forth his Son, made of a woman, made under the law, To redeem them that were under the law, that we might receive the adoption of sons. And because ye are sons, God hath sent forth the Spirit of his Son into your hearts, crying, Abba, Father.
    Prayer Bears
    My email address

    ReplyDelete
  29. Praying as we head into Holy Week remembering all that our Savior did that we might have hope!
    I Corinthians 15:1-4 Moreover, brethren, I declare unto you the gospel which I preached unto you, which also ye have received, and wherein ye stand; By which also ye are saved, if ye keep in memory what I preached unto you, unless ye have believed in vain. For I delivered unto you first of all that which I also received, how that Christ died for our sins according to the scriptures; And that he was buried, and that he rose again the third day according to the scriptures:
    Prayer Bears
    My email address

    ReplyDelete
  30. It's a privilege to be able to pray for you!
    Revelation 1:5-6 And from Jesus Christ, who is the faithful witness, and the first begotten of the dead, and the prince of the kings of the earth. Unto him that loved us, and washed us from our sins in his own blood, And hath made us kings and priests unto God and his Father; to him be glory and dominion for ever and ever. Amen.
    Prayer Bears
    My email address

    ReplyDelete
  31. 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
    My email address

    ReplyDelete