Tuesday, January 26, 2016
"I hurt."
I hear the breathy whine in my voice. *shudder* Is this the direction I want to go? Just because I'm uncomfortable, I'm not weak. I can't let myself spiral into needy despair. I can't let myself feel hopeless or helpless else I'll find myself in a pit I can't climb out of. I need to readjust my attitude again.
Kristy, speak firmly. Don't groan. Maintain a "can do" attitude. Take every opportunity to add in a mini workout. Don't give up! Stand straight. Look up and not down. Don't dwell on the now, focus instead on where I want this body to be able to accomplish. Set realistic goals and go for it! God, help me refresh and renew my mind. I don't want to get stuck in the mentality that my body is breaking down and nothing I do is useful. Give me reason and the will to fight. Give me the heart to face my fears and see the potential past my nightmares. Give me peace. Point my heart always to you. Give me the patience to endure. Give me the confidence to keep moving. Give me the strength to not give up.
In Jesus' name I pray, amen.
Thursday, January 28, 2016
Pain. Discomfort. Pain. Twisting muscle spasms. Edema. Numbness. Ache. Muscle weakness. Pain. No, no, can't label everything as pain... If I do, I'll fall into a pit of despair. I'm scared. These past 3 to 4 days, my body is retaining at least a pound of water. I now carry about 20 pounds of excess fluid in my body. I don't know what's going on. I can't stop the fluid retention. My abdomen is so distended it's hard to move, sometimes hard to breath. I can only nibble at food now; if I eat too much, I throw up. My legs are like water balloons, the limb is so puffy the skin is almost translucent in the sun.
How much longer do I have? If this fluid retention continues, I'll not be able to walk or eat anymore. I'm seriously reconsidering hospice... getting out of the house for appointments becomes more and more difficult. I want to hide. I don't feel good. I don't want people to see me rock in pain or cry helpless tears. Where did all my determination go? *poof* All talk, no substance. I'm tired. Can I give up now? No, even if I choose hospice, I can't see myself laying in bed, letting my body drift out of control and happily drowning in pain medicine. So tempting. I hurt. Is my work done yet? I will continue to fight against my body's lack of control by staying in control to the best of my abilities. This is the only way I can think of to honor Jesus with what I have left of me. There's not much left. So broken. Hurting. Disappointed in myself. Scared.
God, help. I'm lost. I hurt. I want to rest now. Can I leave this world yet? When is okay? How much longer? I no longer hold onto my sanity. I can barely think, much less process information. Only in your presence can I find peace and relief. Keep me under your wings, O Lord. I have nothing left except you.
Friday, January 29, 2016
I'm at the infusion center for my 3rd weekly infusion of iron and second shot of Procrit and vitamin B12. Perfect opportunity to ask for a trial of increase lasix in an attempt to rid myself of the excess liquid stored in my body. I give the nurse my request who then asks the nurse practitioner in charge. Turns out my hematologist was sitting right next to her during the call.
"No increase in lasix. The tumors are blocking the body from being able to void the fluid. The patient will just get dehydrated."
Grrrrr.... there's so much I want to say! One, there's no test or solid confirmation that my tumors completely negate my ability to void excess fluid (after all, the 20mg dose I receive in the infusion center helps me urinate). I've also got arguable points two, three, four... but my hematologist won't listen! Argh! I am so frustrated!!! To prevent dehydration, I can just drink more liquid. I'm already in the infusion center where they monitor my blood pressure and symptoms... isn't this the best time to trial any changes in medication dosages? Or how about actually testing my body to see where any possible blockages are before making a decision!
Blowing puffs of air past my lips, I struggle to quell my annoyance. Inside, I'm boiling with anger. What's the harm in a slight dosage increase? Okay, okay... I'm totally spoiled. Kristy, take a deep breath. Another. I'm very blessed that all my other medical providers take the time to listen to what I have to say and actually work hand-in-hand with me regarding my care. I could push the trial of IV lasix through other avenues. I'm tempted. I now have about 21 pounds of weight in my abdomen and legs from just fluid retention. My body is increasing the water it holds by about 1 pound every day or two. I'm scared. I'm willing to try anything to make this extra water go away... or at least stop the escalation of weight! I'm desperate!
Kristy, stop!
Before asking my hematologist for the increase in lasix, Lord, I first asked you for guidance. I said that whatever decision the doctor made, I trust you to be the one guiding the entire process of my medical care. *deep sigh* I will continue to trust you. Instead of pushing my own agenda, God, I know your timing is always the best. I don't understand why I can't get the trial of IV lasix now, but if/when the time is right, I know you will provide. Father God, your timing, not mine. Help me submit to your guidance. I've seen you come through in situation after situation... if you want something accomplished, it will be. I'm not giving up a potential trial of IV lasix, but at the same time, I acknowledge that you are all powerful and that I can trust in your goodness. The very fact that I am still able to walk, eat, and enjoy time with all my family and friends is a miracle in itself!
So Lord, as sovereign God in my life, I lean completely on you. What happens in the future, I leave in your capable hands. Thank you that I can still move. Thank you that the pain from the abdomen being stretched so quickly from fluid retention is manageable. My peace comes from the knowledge that you can do anything you want when you want. My faith, hope, joy rest in you. Whatever happens, I acknowledge that you are in complete control. Lord, into your hands, your timing... I give my body and all its ailments into your care.
In Jesus' name I pray, amen.
Me and Noel in my cool massage chair =)
