The story of my disease

It’s been a couple of weeks since my last blog. Some things are happening but not too much to report. Some great news, some frustrating news and some struggles … but that’s how liver disease works.

First, my health. I am still struggling to learn my limits. Some days I feel great, almost like I don’t have this terrible disease. For example, last week Monday thru Thursday I felt human, a slow-moving human but human none the less. Thursday I did a few errands and then went to the Apple Store to replace my defective phone. I got there at 11:30 and it was nearly 2:00 when I finally left with my new phone. It was a long day. Then, Friday I was miserable with a 101.0 fever, nausea and pain. Saturday I felt somewhat better but laid low doing laundry for the day. I was at 100.5 and made myself eat. Sunday, I am back to the land of the living and Robin and I were able to attend a pancake breakfast fund raiser for The Navigators. Is my activity limit only 3 hours? I’m frustrated.

Lahey may put me on a new prescription. Xiaflaxin. It costs $1,495.93 for a two-month supply. I’m praying my insurance company will approve it so it only costs us $200 a month as a 4th tier prescription. And then we’ll seek the Lord to provide that $200/month.

The timing of my transplant is all in God’s hand. I have to wait until after July because I am having a course of double dose Hep B vaccines. (Ouch!) Evidently my earlier Hep B vaccine for mission trips did not develop the necessary antibodies. Tuesday I’ll get my second course, one in each arm muscle. That means a couple of days of pain in my arms. I’ll have another in April and the final course in July. On days of suffering I ask God why He is making me wait. No answers. Silence.

The Great News

Four family members who are willing to give me a portion of their liver have all gone through the initial testing and ALL FOUR are matches! That is a major blessing. Other living donors including friends and cousins are still being evaluated just in case. (download live donor packet)

The ancient book I love that tells of my God and the people who follow Him has had me thinking a lot lately of a man named Job. Job was suffering intensely. He lost his health, his savings and his connection to society. A lot of the crap on TV is simply that, crap. (Creflo Dollar, ” God wants us to release our faith for everything we need & desire. He wants you to expand your capacity to receive by believing Him for BIG things!”) I don’t know what Bible he’s reading but mine tells me that my God wants to expand my capacity for giving and that my needs and desires need to be replaced by steadfast desire to advance His love. Job is an example of that.

Did you know that Job’s wife told him to just give up, curse God, and commit suicide? Wow. “Thanks honey.” My wife is my rock. She cries with me, prays, encourages and serves me tirelessly. If she was like Job’s wife, I probably wouldn’t be as strong as Job was. I think I would have given up. I hope not but you never know the depth of your faith until it is tested.

“And this goes back to Satan’s tactic: to systematically remove Job from all his support structures, his body, his wealth, his family, his friends and from society. When these support structures are withdrawn it is very possible for negativity to flood in. The ultimate aim, however, is to separate Job from God. It is to create spiritual alienation. And this is recognised at the very opening of the text and encouraged by Job’s wife. For Job to “curse God and die” is the goal of Satan. Job, as we know, never does so. He immediately rejects these words.” – Mark Rainey

Some days it takes all I can muster to fight that spiritual alienation. I feel like my prayers bounce around on my ceiling and walls without being heard by God. I can’t find Him anywhere and can’t sense His presence. I think we all feel that way sometimes. I just have to remember that my God is near even when I can’t find any sign of Him anywhere.

“Therefore, since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of highest privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory. We can rejoice, too, when we run into problems and trials (and suffering), for we know that they are good for us — they help us learn to endure. And endurance develops strength of character in us, and character strengthens our confident expectation of salvation. And this expectation will not disappoint us. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.” (Romans 5:1-5, NLT)