Old.... It makes me smile every time though.
May 04, 2009
Well worn thoughts
Well... there is not too much to report. I'm still just plugging along on home IVs. I hope I can go off of them soon. There is a friend who is getting married this week, I would like to go. I don't like dragging tubes around and hiding a pump in my purse....
CF is sometimes just as much of a mental battle as it is physical. It has been that way for a long while actually. Seth and I talked about fighting so long and hard, and knowing that you can't ever win. Though in doing that you do win, in a way. Don't let it get you down! I often don't like to talk about the mental part of CF... It gives the wrong impression. For some reason it always comes off as depressing. I am not depressed though. Sometimes I wonder about clinical depression verses circumstantial depression. Sometimes it it o.k. to feel sad when you have real reasons for feeling sad. God really is my hope and strength. If this, earth, was all that there was- that would be depressing. I am tired of fighting the good fight. I am exhausted and ready for heaven, who isn't? I love living. I love life. Real true life. The gift of life is the best and I am thankful to really live. Forever.
Despite how this post sounds, I have actually had quite a nice day and am in really good spirits. All of these thoughts pass through my head, like a record, even when I am completely happy and joyful. Some things you have to experience yourself to really know what it feels like, Cystic Fibrosis is one of those things.
I really like this song...
..65 Roses..
What is life expectancy, what a way to phrase a question/
What kind of answer should return the truth, convey the message//
Is it, equality the same end for every person/
Is it sovereignty a giving God and living with purpose//
Is it only shall the strong survive and then will end the weak/
Or a dog eat dog world, take advantage, turn the cheek//
How bout living out your dreams and express it through a poem/
Know what you expect out of life and you can gain the gold//
Well for a family of an infant diagnosed to comatose/
It's journey down the pathway to fight and know the ropes//
Each living soul is different like a fingerprint's identity/
Each body's made a little different, singing it's own melody//
Embedded in the DNA, where the twisted strands dance/
I wish I guide the way and hold each little one's hand//
I've been there before, and I know the way now/
Like a tourist with a map and pamphlet, got it laid out//
Life loves me, life loves me not it goes/
See the beauty in a flower when I'm pulling on the rose//
Prick a fingertip, bleed a bit, from trying to hold it tight/
I want a year for every petal, still alive at sixty-five//
Can life be re-paid, can life be reimbursed/
Get the tears back you cried for every time you felt the hurt//
What about medical bills, hospital trips, doctor visits/
Time and time again hearing results that weren't worth a listen//
But you have to, hear the news for what it is/
Could do damage to your ears, or it might mend a heart thats delicate//
A life-long relationship with medical technology/
Feel like the drugs and machines should owe me an apology//
Where to aim to blame, if only that I knew/
For the one who has the power, has more love for me than I do//
Not in measurements of self-esteem or the image in the mirror/
Not in a sense of being vein but in a sense of being clearer//
Unconditional, not limited by any means/
Break the strands and molds that try to pigeon-hole me please//
Unconventional, I'll be damned if I don't defy/
Disease, I want seeds in a family that can multiply//
Life loves me, life loves me not it goes/
See the beauty in a flower when I'm pulling on the rose//
Prick a fingertip, bleed a bit, from trying to hold it tight/
I want a year for every petal, still alive at sixty-five//
Will God give me the chance to say goodbye one last time/
Gather friends and family members, single file in a line//
Apologize for neglecting, for always second guessing/
I should have nurtured more relationships are such a blessing//
Hear a word from a friend that makes you smile when it hurts/
Get better treatment from your wife than any certified nurse//
And a rock to stand on, not just in Christ but in family/
Break their backs just to help you hold steady handling//
(1,2...) I'm an angel in waiting/
Growing wings out of my spine to take flight navigating//
When it comes time, give em pounds & daps I'm outta here/
Take the one and only flight up, blast into the atmosphere//
Look next to me, I'm not flying all alone/
I'll take the long road home where the psalms unfold//
And be the oldest man living till the day I pass away/
Telling cystic fibrosis that it lost again today//
Life loves me, life loves me not it goes/
See the beauty in a flower when I'm pulling on the rose//
Prick a fingertip, bleed a bit, from trying to hold it tight/
I want a year for every petal, still alive at sixty-five//
-Citizen Aim
April 29, 2009
Your kidneying me
My I.V. Tobra was abruptly and unexpectedly halted this morning. I have been on it since Friday. The home care nurse took blood from me on Saturday or Sunday. They called me and said my "levels" were elevated and then lowered the dose of the Tobra. Then I gave more blood last night and the doctor's office called today and said there was a problem with my levels still. They were actually higher than the last time! So I stopped Tobra this morning and they want to get more blood from me today and tomorrow. (Those vampires, ha ha) They told me that my creatine had been elevated since I started I.V.s. I am still taking Imipenem and I am fretting about my poor lil' kidneys! I think the creatine and the Tobra levels are separate things so even though the Tobra is halted I am still worried about my other meds, especially Imipenem, affecting my kidneys. I am keeping tabs to make sure I don't hear "ringing in my ears" and am going to start drinking more water. They also ordered some I.V. fluids to help dilute also. Please pray that if it's the Lord's will my levels will go down, and no damage will be done to any of my organs.
April 25, 2009
April 10, 2009
April 07, 2009
What Levi thinks about me....
I saw this on another blog, and thought I would try it.
1. What is something I always say to you? "I really love you"
2. What makes me happy? "We live"
3. What makes me sad? "When Daddy doesn't do what you tell him to"
4. What makes me laugh? "April Fools and spicy eyes"
5. How tall am I? "Medium Tall"
6. What is my favorite thing to do? "Be on the computer and you don't let Daddy go on the computer"
7. What am I good at? "Loving Chiquita"
8. What is my favorite food? "Cheerios and Strawberries"
9. What makes me proud of you? "Go potty"
10. What do we do together? "Cuddle"
11. How are we the same? "When we do the same things"
12. How are we different? "When we don't do the same things"
13. How do you know that I love you? "Because we are cute"
14. What do I like about Daddy? "Loving him"
15. Where is my favorite place to go? "The grocery store"
April 05, 2009
April 04, 2009
A nice day
Today was nice. We rode bikes in the afternoon and ate ice cream downtown in the evening. Here are some photographs that I took today.
March 17, 2009
"Gas"
Yesterday as Levi and I were driving over the 17 towards Mountain View we passed a big, red, shiny tank truck.
Levi said: "Mama, don't pass that truck. I like that truck, and want to stay by it, don't pass it!"
I looked over at it and saw the word "SEPTIC" written on the side.
I said: "Do you know what is inside of that truck?"
Levi: "No"
Me: "Poo Poo and Pee Pee"
Levi: "Gross!"
As we kept driving a minute later we passed another truck. This one was silver, had two tanks on it, and looked like a fuel truck to me.
Levi said: "Mama, what is inside of that truck?"
Without thinking too hard about it I said "I don't know, maybe Gas."
Levi started giggling back there in his car seat. Then I had to crack a smile because all of a sudden I realized exactly what kind of "gas" he thought I was talking about.
February 25, 2009
Subscribe to:
Posts (Atom)
