Wednesday, September 29, 2010

"It's not about me."

Phillipians 2:1-4 "Therefore if there is any encouragement in Christ, if there is any consolation of love, if there is any fellowship of the Spirit, if any affection and compassion,make my joy complete by being of the same mind, maintaining the same love, united in spirit, intent on one purpose.Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves;do not merely look out for your own personal interests, but also for the interests of others."

  I have been meditating on this verse lately. Thinking a lot about how as a society these days, we tend to become self absorbed. We tend to think more about ourselves and our problems, than we do others and what they are facing. Problems are problems, most of the time they are not different. Sometimes they are self caused problems, things brought on by making wrong choices or poor decisions. But, sometimes they are just problems you have no control over and you didn't choose for yourself.

  I have had both kinds of problems. Living in the latter, a problem that we didn't choose for ourselves, it is different. But, something I have learned is there is always someone else who has a worse problem or situation.

 I have also learned that, it helps to not become self absorbed and focus on yourself. I get comments from friends all the time. They don't want to burden me with their problems or share things with me because they feel I have enough of my own. I actually like to pray for others and hear from my friends. I like to know what is going on in others lives, I don't like self absorbed people and don't want to be one myself. It hurts others when you only focus on yourself. I know, I have done that and it doesn't feel good. Facebook and other social networking sites seem to promote this in our society. "What is on your mind?" instead of what is everyone else doing.

  I am trying a one woman battle to combat this, I won't be a contributor to this. I got a email from someone this morning, thanking me for thinking of them when I have so much going on. It's not out of duty that I do it, I do it because I really enjoy caring for others and being a good friend. I am blessed to have many friends and family members in life and I try to be a good friend back. It is hard and I fail many times, but it takes a concious effort. I have been on the recieving end of someone being self absorbed and it doesn't feel nice at all. I never want to be that person.

 It's all about balance and trying, making the effort and gesture. Is there someone in your life, that you can reach out to today?

Thursday, September 23, 2010

Taylor's gift

My friend Viviana just shared a video with me. It was about a young girl's family who chose to donate her organs when she died in a skiing accident

. I cried watching a video of the parents meeting the woman who got their daughters heart. You can watch the video here be prepared to cry.

 What a amazing gift they gave five people at such a difficult time. Families just like ours benefited.

 It is a reminder of why it is so important to pray for the donor family everyday and the choice they face. They also started a organ donation awareness foundation called Taylor's gift. You can click on the title of this blog to visit the website.

This has given us hope during this dark time. I sat on the couch watching this video with Marty today crying and thinking about who our future donor will be?

The song that best describes my life right now

"Bring The Rain"

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty 

Very early on in this trial, two friends prayed that God would be glorified through our family and this trial. I think he has, through no effort of our own but at what he has done for us. I was singing this song this morning and cleaning my house. Just thankful for all that has happened and all that is to come. I am thankful for this trial, it has forever changed our lives and made us view things very differently. Things that mattered before, just don't matter anymore. Priorities have changed and really we have changed most of all.

Wednesday, September 15, 2010

Good news!!!

Marty has be re-certified, which means our insurance has agreed to pay for his transplant. They have agreed until March, when Marty will have to go on Medicare. Yes, you read correctly Medicare as in the over 65 goverment insurance. Most End Stage Renal disease patients go on it immediately, our insurance has a 36 month cap on coverage. We have to pay a premium to Medicare, so we are just waiting until the coverage on our insurance runs out.

Good news is, he is top of the list and maybe we won't have to apply for Medicare! We need to focus all of our thoughts and prayers toward the donor family. They are the one's who need it more than us, they will be paying a high price for Marty to have life. Pray for them daily and for God to be at work in their lives.

Also, pray for the people who don't have the hope we do. We know a few people who have it far worse, dealing with diseases that have no cure or treatment. We have several friends, who don't get the chance to have a life changing treatment. So please pray for them, God knows who they are.

A/N: I have a new comment system, you can comment with FB, Twitter, Yahoo id or just by typing your name and email address. I am just trying this out because I have been getting complaints that comments aren't posting or people aren't allowed to comment. I would love feedback:

Please note, there are two comment buttons: one  says "Comment"for those with blogger accounts or anonymous commenters.

the second says "Comments and reactions" for those who would like to use FB, Twitter or email to comment.

Saturday, September 11, 2010

When the rug gets pulled out from under you.

Authors note: You might not understand all of this, because we surely do not understand all of this either. We are very confused and things aren't really clear.


Last Sunday, I started to have a feeling something bad was going to happen. Since September 11,2001 every year the week before my birthday, I start to feel this way. In years past, everyone has told me to get over it and move on. So this year,  when the feeling came I just pushed it off and kept going. Except for the other day when I confided in my good friend Andrea that I was feeling that way.

This morning I started to feel that way again and told myself to knock it off and enjoy life. So the kids and I did our schoolwork and started to clean the house after school. We had the windows open, music blaring and were just enjoying the time together. Marty told me he as a work, his back wasn't hurting when he walked and he wasn't gasping for breath, he thought," This is what it's like to feel good, I have forgotten."  Then the phone rang, it was the social worker from Stanford wanting to speak with Marty, who was at work.

I took the call and the rug was pulled out from under us. The social worker had just called to check in two days ago, a week after they called the dialysis center for his labs and progress notes. When the social worker called, she said nothing of consequence and we just got hopeful that maybe things were moving along.

So when she proceed to tell me that Marty was non-compliant and skipping treatments, it was very upsetting. This isn't the case and he is far from non-compliant, we try so hard to make sure he does what is needed. She started saying things that verbatim sounded like a incident we had a few months back with his nephrologist ( you can read that here ) which has been resolved. The last time we saw the doctor, he told us the labs were good and they would never be perfect. Yes, there had been some issues with his phosphorus and the binders which he takes with food. He did stop taking them because they caused him to vomit every meal.  But, they found a better option and he has been taking them faithfully for months now.

Basically, the social worker accused us of lying and me of trying to "cover" for Marty. She said we needed to admit we weren't doing what we needed to do. That was so offensive, she really was being very nasty and telling us we made her look bad. She didn't want to speak with me and wanted to talk to him. She wanted to call him at work and I told her she was NOT to do that. She told me that he was going to be placed on a inactive list and wouldn't be able to recieve any offers at this time. She told me, that if he is non compliant now, that he will be after his surgery and the insurance is refusing to pay.

 So I called Marty as he left work and told him the news. He was devastated, his whole future seemingly gone and his hope bleak. We cried together as we tried to comprehend what this means for us and our children. Instead of planning for the future, we would start planning for a very different future.

 He came home and called her back, she told him the same things as she told me. She was much nicer to him after I warned her to NOT speak to him in the manner she spoke to me. She told him they needed him to sign a contract saying he would comply with all treatment ( ridiculous since he already does that) Basically, the file from the Nephro and dialsyis center was worded to make him sound like he was skipping treatments while he worked and not taking his medication as prescribed. This all goes back to that incident, even though the labs have improved and everything is better, the insurance wants to capitalize and save some money by denying him. She heard him out and told him she will go to bat for him with the insurance. She made a recommendation which we will follow. She also wanted him to call his coordinator and ask how long he should expect to wait.

He called his coordinator and she told him, for kidney/pancreas transplant he is the top of the list. She also told him that he has been offered organs several times. He has high antibodies and that has prevented a few offers, the other offers were passed on because of the donor and quality of the organs. This was huge news to us, we never knew any of this. She told him that she fully expects him to be transplanted in 6 months to 1 year. She told him he is active at this time.

We are feeling hopeful, we trust that our God is the same he was before this phone call and his promises will be carried out. We do need major prayer right now, that this will be worked out and he will still get his transplant. We are scared, not going to lie about that and the kids are scared. We are tired and weary, we are discouraged. We have done everything and tried so hard, he has kept working when he could be making more money on disability. We go to every appointment, skip out on functions to stay home and do dialysis.

We have so many praises and answered prayers, so many of you have been with us on this three year journey and seen God work so many things out.

Of course, we always think of our donor. The person who will give their life for Marty to have life. Where are they today? What is going on in their life? We must always pray for them and their family first. Pray for them to know Jesus and have faith in him. Pray for them to have their life in order and for their family when they have to pick up the pieces. When our rug is replaced, theirs will be taken from them. They need the prayers more than we do.

A special thank you to Matt and Tam for being there to pick up the pieces this afternoon. To those who called and prayed, to those who messaged and Facebooked us, we thank you also.

I am going to put specific prayer requests here and thank you for praying in advance
Pray for the insurance to re-certify him for transplant
Pray for the truth to be told and honest answers from the clinic
Pray for Marty to be strong and keep trying
Pray for good lab values 
Pray for the donor and their family
Pray for wisdom and guidance, are we supposed to switch clinics? is the door being closed for us at Stanford
Pray for UC Davis and their program, is this the right place for us
Pray for peace, calm and happiness in the days that we wait.
Pray for rest
Pray for the kids 

Saturday, September 4, 2010

Grandma in the backseat

Elizabeth is more on the quiet side like Marty and she also has his wicked sense of humor. Recently he has taken to listening to talk radio. We were driving to his work the other day and a lady came on one of the shows sharing her situation.

From the backseat I hear, " Save it lady, I don't want to hear your sob story." come from Elizabeth. The tone she said it in and the way she said it, made me think if I turned around........... I would see my grandmother sitting in the backseat. It was quite uncanny.

I guess she takes after her namesake more than I thought she did!

Friday, September 3, 2010

Conner on Main Street

We were driving down the freeway yesterday and Conner starts talking about Disneyland. They are getting excited to go in October and have been talking about it constantly. Yesterday, he brought up the smells of Disneyland.

He said, "Main Street has it's own smell like no other."

I started thinking in my head of all the smells of Main Street. Candy Palace and the warm vanilla smell that is pumped out on to the street. The Bakery and the smell of waffle cones, Coke Corner with it's many smells. The kid has a good point, of course he spent 9 months in utero working on Main Street along with me.

He said, " Well first, I love the smell of diesel when you ride in on the tram." that's more Parking Lot but I will let it slide. The next part was the part where he left me in hysterics.

"Yeah, then there is the whole horse smell on Main Street. You know the have the trolley ride and well the horses poop on the street." he states emphatically. Seriously, of all thing............I was NOT expecting that.

He goes on with one final statement, " and the smell of corn dog oil from the corn dog cart!"

That kid cracks me up, he is so random!