ThisOneBreath: a perspective on life and breathing with Cystic Fibrosis

One Year of Enjoying God's Grace

2011-12-01T17:00:00.001-07:00

Tiffany’s last post on facebook two nights before the Lord took her home was “Thanks so much for your love and prayers. I firmly believe my days are in His hands and no one or nothing can change His perfect timing. As for my God, His way is perfect!” Tiffany had told me the day before she wrote this that she did not think that she would live, and we moved that night to ICU in the hospital. Those last couple days of Tiffany’s life were in many ways surreal as we walked through many of the realities of life and of death. They were precious days of much love, singing, joy, tears, stories, and just being together. I believe that Tiffany’s facebook status that she wrote from ICU having told me that she didn’t think she was going to live point out two important facets of Tiffany’s life. One, she rarely thought of herself but rather thought of other people. I am confident that she wrote that post very intentionally knowing that it would be her last post, and she wanted people to know how grateful she was for their support and to challenge them before the Lord took her home that they needed to trust in God. She served people tirelessly even to her own hurt but yet she never complained but cherished the opportunity to live a life of impact. The second facet was her unwavering trust in God and His plan for our lives. We often told each other in those last couple of days that we were content with the will of God for her life - we knew that God’s way was best even though it did not coincide with my personal desires, and so she and I had to choose to hope in God and trust in the that reality that His way IS perfect. Looking back now a year later, I continue to see the hand of God at work using the life of Tiffany and working in my life today. His way is perfect, His timing is perfect, Tiffany's and my days are in His hands, and how grateful I am for the so many people who have come alongside of me and supported me throughout all of it. Thank you!

The picture below is of her headstone that we put together and placed at her grave this week. It is an aluminum plaque mounted on a piece of granite that came off of the family ranch. Although you cannot read it from this picture, the background graphic behind the lettering is a picture of her piano with a prelude sitting on the keys. The prelude is about the finished work of the cross and has a list of songs about Christ’s death on the cross. The last two songs are “It is Finished” and “Satisfied.” She is enjoying her inheritance in Christ today! The plaque reads:

Tiffany Davis Brock

December 5, 1975 ~ December 1, 2010

A Life’s Melody

To The Praise of God’s Glorious Grace

Ephesians 1:3-14

A Concert In Tiffany's Honor

2011-09-13T23:09:00.001-07:00

Had an interesting experience today -- I went in to Tiffany's and my favorite convenient store to get a drink and had a good conversation with the two lady workers. It has been over 9 months since Tiffany has passed away but yet she is still making an impact on people's lives. We are having a concert in Tiffany's honor this Saturday to raise money for the Davis Music Wing (named after Tiffany but using her maiden name) and I was inviting the ladies to come, and it sounds like they may come if they are not scheduled for work. It just amazed me that after nine months, someone could still have such an impact on people that you only got to know in short interactions over a counter. What a great reminder to me that I must be purposeful in my interactions!

If your interested, we would love to have you join us for the concert this Saturday night September 17. It will be a night of great music as a number of her music colleagues are coming together to honor Tiffany.

Faithful to His Promises

2011-06-06T08:51:00.000-07:00

Well, my week was what I prepared for -- overwhelming. Overwhelming not in a bad sense but in the reality that I was feeling a whole bunch of things all at once. So many times we equate overwhelming times that are hard emotionally as bad things when in reality, if they are responded to with hope and trust in God can be quite good times. Good in the sense that it draws me closer to my God and allows me to work through the maze of emotions that come with some of life’s opportunities. It is these times that I must go to the Rock that is surer than I -- Jesus Christ my God. Friday morning was especially hard for me as I was working through the week and preparing to go to CO -- So I did what Tiffany did so many times, I immersed myself in God’s Word and reminded myself that He is “Faithful to His Promises.” Here are the verses that helped me through my overwhelming time.

Psalm 119

73 Your hands have made and fashioned me;
give me understanding that I may learn your commandments.
74 Those who fear you shall see me and rejoice,
because I have hoped in your word.
75 I know, O Lord, that your rules are righteous,
and that in faithfulness you have afflicted me.
76 Let your steadfast love comfort me
according to your promise to your servant.
77 Let your mercy come to me, that I may live;
for your law is my delight.
78 Let the insolent be put to shame,
because they have wronged me with falsehood;
as for me, I will meditate on your precepts.
79 Let those who fear you turn to me,
that they may know your testimonies.
80 May my heart be blameless in your statutes,
that I may not be put to shame!

Preparing to be Overwhelmed

2011-05-26T21:35:00.000-07:00

The following post is from Tiffany from Sept. 5, 2010. It followed a difficult discussion with our dr.s when she was in the hospital and they started talking to us about a lung transplant for the first time. The post pretty much sums up how I am viewing this next week -- our wedding anniversary, the six month anniversary since her passing, and going back to her graveside for the first time since the weeks following her death. I am not sure what all the week will bring but I must simply do what Tiffany says in the last paragraph.

“Do you ever have days where you are overwhelmed? Where you reach the end of your rope and feel like saying “no more-I can’t deal with this”? For me, the past couple of days have been at this spot. There were several events that just tipped the balance-not one of them was that huge but connected all together they made for something that just was too much.

I am so thankful for my hubby-he knew I was struggling. He graciously cleared the room and just came and sat and held me. There were tears (sometimes those are healing in and of themselves), questions, and venting; then a choice to rest in what God is doing-acknowledging that none of these things were a surprise to him-they had not caught him off guard. It did not make the struggles disappear and there have still been “it’s too much” moments.

I am sure that we have not experienced the last of the overwhelming moments, however I pray that in those moments I will be faithful to respond in faith, trusting the One who is walking, shepherding me through them.”

False Guilt - The Application

2011-05-16T08:03:00.000-07:00

So I have been trying to decide how transparent I want to be with this last post in regards to false guilt as I have written these posts as much for me as for other people who may be facing it. Living life whether you have CF in your life or not is filled with many difficulties some of our own making and many that we never asked for. I would like to share at least one very personal application of dealing with false guilt.

Tiffany and I very openly discussed the end of life issues as we knew that we would likely face them sooner or later and end of life issues are very difficult. Tiffany’s last hospital stay was very unusual compared to her other stays as we were treating new things and the real culprit (MRSA) did not show itself early or very often. I am a person that asks a lot of questions and doesn’t just buy in immediately to every course of treatment. I have a healthy respect for Dr.s and their opinions, but I am also very cautious of residents especially the first year ones. Because of their past mistakes we would rarely move forward without the primary Dr.s signing off on it or us confirming a course of action with our CF team. Consequently, this delays responses when a resident sees something on the weekend and wants to make all these changes to Tiffany’s treatment plan and wants to make all these changes without taking the time to get to know her. I pushed back quite a bit because they didn’t seem to know what they were talking about, but Tiffany and I could tell that something had changed internally. We made some difficult decisions over the weekend without the primary docs and some decisions were put off that looking back I don’t know if they were the best decisions as it seemed to allow the MRSA to come back even more. By the time we made it to ICU 24 hours later the MRSA had set in with a vengeance once again. We then had to make decisions about what we would or would not do with treatment specifically was Tiffany wanting to go on the ventilator. We had basically decided that if it gave her a fighting chance for the drugs to work or if it was needed to keep her alive till all of her family got in then we would do it, but we did not want to do it if it was going to only delay the inevitable. The Dr.s opinions was that it would only delay the inevitable and that if she went on it she would not come off of it. The evidence of the MRSA spreading was evident, and Tiffany could feel her body shutting down.

It is hard now looking back and wondering what if we would have made those treatment changes quicker or would she have had a fighting chance if she would have gone on the ventilator and a whole host of questions follow. It would be very easy for me to live in false guilt wondering if I did everything right for Tiffany, did we do everything we could to fight the CF, did I make the right decisions. So I go back to the solution to false guilt realizing that this battle is a battle of the mind that can either lead to depression or can lead to trusting in God’s design for our life. The reality is that Tiffany and I have always been very aggressive in treating CF and we could only make decisions with the information that we had, and I believe that we made good decisions with the information and the circumstances that we had. Knowing that our identity and life was in Christ, Tiffany did not fear death, and I know that she is with Christ. Because we had the hard conversations before we were placed in the end of life situations, I know that we made decisions that were consistent with Tiffany’s desires and based on good information from the docs. Was it hard to watch Tiffany pass away as I held her hand, yes it was, but I can also look back at that last week of her life and rest in God’s plan for her life and for my life and not live in false guilt. Tiffany did not pass away because we did something wrong -- Tiffany passed away because it was God’s design for her life. We often prayed for God’s will and that is exactly what God accomplished. I don’t have to live in false guilt questioning our decisions; I have to live trusting my God. That means I don’t spend my nights playing the what if game but rather I spend my nights meditating on my God and what Tiffany is enjoying in the presence of my God.

Living Between a Heritage and a Legacy

2011-05-08T16:50:00.000-07:00

The following is my tribute to my mother-in-law, a mom living between her heritage and her legacy. As we celebrate Mother’s Day, I thought that this would be a fitting entry.

You see, my mother-in-law is a woman who has impacted my life in a great way. Over the course of the last 16 years that I have known her, she has taught me much. Over the course of the last couple of years, we have learned much together as we spent many hours caring for Tiffany and simply enjoying life as a family. In the last year, my love and respect for my mother-in-law has grown even more as I have watched her live through a very difficult time of life as she experienced the death of her daughter and her mom within six weeks of each other. Within six weeks her legacy and her heritage came together in Heaven.

The Heritage that she had in her mother is a rich heritage. Her mother was a kind and gracious woman who passed on to my mother-in-law many of the needed traits she would need to live through the life that God had called her to live. She was faithful to her God, her husband, and her family throughout her life. She was a genteel woman who graciously served her God and her family. It is a Heritage worth emulating and a Heritage that should never be forgotten.

The Legacy that she has in her daughter is an unfathomable legacy. By that it is one that is hard to understand. Usually your legacy is what you leave behind once you are gone, but Mom’s legacy went ahead to glory first. Although we all make our own decisions, one’s children many times is an indictment upon you. Mom’s legacy, my wife, is an indictment that speaks volumes about my mother-in-law. I got to see up close the impact that Tiffany’s mom had upon her life and how she lived with Cystic Fibrosis. Tiffany’s desire to not quit, to not make excuses, to trust in God, to keep living, to invest in the eternal, to pursue excellence, to love music, to love her husband and her family, and her gracious spirit towards people and life’s difficulties is a legacy to the life of my mother-in-law. It reveals a woman who lived that out in front of Tiffany through it all. Tiffany and I in the last couple years of her life would often laugh about how much she was becoming her mom whether it was how she wrote, spoke, or viewed life. Many fear that their wife may become their mother-in-law--Me, I welcomed it!

So Mom, on this day that you remember your Heritage and your Legacy, know that you have forever changed my life. I am privileged to have walked this way with you. I love you and am thankful that today I can say Happy Mother’s Day as your Heritage and your Legacy are getting to worship our Savior face to face. Although they are not with us today, they are with the King of kings. Your Heritage will never be forgotten and your Legacy will always be loved!

False Guilt -- The Solution

2011-04-02T09:06:00.000-07:00

We have looked at the source and results of false guilt which leads us to the question, “what is the solution to false guilt?”. It is important for us to remember that we do not need to live our lives in bondage to false guilt otherwise those results will show up in our life. We can have victory, and we don’t have to live miserable lives.

First you need to identify the type of guilt that you are having of whether it is true or false guilt. Dealing with true and false guilt are dealt with entirely different. If you need to, go back and reread my entry on the source of guilt. Identifying the source will help you determine whether it is true or false guilt. If it is true guilt, then you will need to take responsibility for what you have done and go and seek forgiveness. If it is false guilt, then the following thoughts will help you.
Realize that the greatest battles that we face are in our mind. Rom. 12:2 tells us that we need to renew our mind in order for us to have Biblical thinking. Eph. 3:14ff tells us that we must be strengthened in the inner man, understand the love of God, and be consumed with the totality of who God is, and then He enables us to do His will. Moving forward in life does not start with “just doing it” but it starts with right thinking.
So what kind of thinking should I have? In short, I must have Biblical thinking but that is a broad answer that you probably are saying doesn’t help me very much. Here are some example of Biblical thinking. Life is not hopeless but rather hope is found in God. My identity is not in my life circumstances but it is in who I am in Christ (if you have accepted Christ as your Savior). God is not out to get me but rather is interested in my growth and me reflecting Him to others -- God loves me even though he designed my life to have this difficult circumstance in my life. God is in control -- I am not. Loving yourself is not the most important thing but rather loving God is the most important thing. Our problem is not that we don’t love ourselves enough but that we put ourselves first rather than God and others. Worrying is not trusting God. My personality is not an excuse for an incorrect reaction. Forgiveness not anger or bitterness is the path to restored relationships. These are just a couple examples of Biblical thinking that we must maintain.
Stop living in the fear of man. Living in the fear of man is allowing others people’s actions or reaction to determine my life choices. For example, someone who has been abused may feel that they can’t be loved or have good relationships because of someone else’s sin against them. That is living in the fear of man -- don’t let someone else’s bad choices determine what you will do -- you can still forgive and you can still be loved and love. Rather you need to live in the fear of God. It is this reverential respect that says I will live my life yielded to what God desires.
Forgive -- this is such an important aspect when dealing with false guilt in relationships. Forgiveness does not equal trust and forgiveness is not putting life back to what it used to be, but it is a promise not to use something against that person to harm them. It is not holding on to the anger. Be willing to forgive.
You can only take responsibility for what you knew at the time--not for what you would find out in the future. This is especially important in dealing with false guilt in the medical field. You can only operate with the knowledge that you have at the time you have it. W’e can’t go back and redo it but we make the best decisions we can with the information we have and move forward and then make adjustments as we need to make them.
Don’t live in the the if only we had . . ., I wish we . . ., what if . . ., if only . . . world. That world of vast possibilities will get you into trouble if you live there trying to relive the past with its possibilities. You have to make decisions from where you are today regardless of the decisions that were made before. Yes, I have plenty of these moments in my life with my relationship with Tiffany in the medical field, in our marriage relationship, in our life decisions, and in our personal ives. I cannot relive the past though and it is foolish to try and figure out what life would have been if I (we) had done something else. Accept where you are today, learn from the past, and move forward making better and more informed decisions for the future. Don’t live in regret.
Focus on the reality of who my God is and not upon my circumstances. Yes, I must deal with my circumstances but I am not defined by my circumstances but rather I am defined by who I am in Christ. Since I have accepted Christ as my Savior to pay for my sin by His death on the cross. My identity is not in my life circumstances such as my job, my family, my health, or my marital status -- my identity is in Christ. When I focus on my actual identity then the issues of false guilt begin to disappear because false guilt many times is tied in to finding my identity in that person, thing, or idea that is creating the false guilt. Who is my God -- He is loving, just, holy, sovereign, all knowing, all powerful, kind, tender hearted, forgiving, gracious, and above all. As I focus in on my God and who I am in Christ rather than my circumstances, then I am able to rest in Him realizing that my responsiblity is to simply make wise choices but I am not the determiner of the end result. I must trust God through it.

Don’t live your life with false guilt -- it will slowly erode your life to a place of misery and no hope. Rather, set aside the false guilt trusting God with your life. As Tiffany challenged me in the last days of her life, “Hope in God.”

They're Back!

2011-03-27T22:18:00.000-07:00

Friday night was a good night. Tiffany and I used to host the college group from our church almost every other Friday night for quite a few years. Many a college students has come through our home with many laughs and some good talks about life. Over the course of the last two years as Tiffany’s health declined and our schedule became more full with living with CF we have not been able to host them as we wanted. This last Friday night though I was able to host a group of about 35-40 college students who filled the house with music, laughter, serious conversation, games, and more laughter. What a blessing it was to be able to host our college group once again. Here are a couple blessings from the night.

Tiffany’s piano was very active with former piano students and others making music.
We had an hour and half singspiration -- what a blessing to just worship God together
The fire pit still accomplishes its purpose -- a place to have great conversation that many times leads to spiritual issues.
Laughter was heard throughout the house
It was fun to just watch people enjoy each others company and to develop friendships that would never occur in the normal walks of life.
I was actually able to stay up till they left (around 1:30 a.m.) :)

Wise, Eternal Ways

2011-03-20T20:43:00.000-07:00

My best friend from college wrote the below poem and sent it to me in memory of Tiffany. It is a poem of great theological depth that considers God, life, sin's effects, God's deliverance, and the need to make eternal decisions in light of these realities. Thanks Wade for focussing me in on the eternal!

Wise, Eternal Ways

From Psalm 90

In memory of Tiffany Davis Brock

December 5, 1975— December 1, 2010

O Lord our God, You are our dwelling place,

Security in every age we trace.

Before firm mountains stood or sun had shone,

From everlasting, You are God alone.

You turn the sons of man to dust again,

Our long, full years come to their mortal end;

Yet in Your sight the years are moments past,

First promising, but soon like withering grass.

Consider now why all mankind must die?

It is our sin; Your wrath is justified.

Your fury poured in death on fallen men,

For open deeds and sins hid deep within.

Though death's cold curse my body still must face,

No condemnation comes beyond the grave;

God's final wrath Christ drank for my poor sake,

And then He rose the chains of death to break.

Chorus:

So teach us, Lord, to number out our days,

And live for You, in wise, eternal ways.

In faithful love, give joy in place of tears,

And bless our work to last beyond our years.

~Wade Williams, Copyright 2010. All rights reserved.
Used by permission

The Blessing of Giving

2011-03-18T17:54:00.000-07:00

I know that I still have one more entry in dealing with False Guilt, but it is still not ready for publishing. I wanted to share a blessing though with you. About a month ago I was able to go into the CF clinic and give them the rest of Tiffany’s meds that we had on hand. What a blessing to hear soon after that they were able to give out some of the drugs to some CFers that could not afford it. You see, the retail price for a month of CF drugs depending on what you are on is usually around 10k a month. These drugs are key to the health of a CFer to keep away infections and to keep the lungs open. What a blessing to know that these important meds are being able to help another person -- it was fun to go to the clinic and give them away.

Today, I also had another one of those blessings. Tiffany had CFRD (CF related diabetes) and had been on insulin for the last two and a half years. About a year and a half ago we were able to get set up with an insulin pump and a continuous glucose management system. All together, I think it was somewhere between 7-10k of equipment and supplies. We were in the process of switching endocrinologist when Tiffany went in to the hospital so we had never had an appointment with her but knew that she worked closely with CF patients. Today I dropped off to their office all of Tiff’s diabetic equipment and supplies so that they could give it to someone who needed it. What a blessing to hear that they already had someone with CF in mind that needed a pump but could not afford one. The insulin pump gives so much greater control of the diabetes and makes life so much easier -- what a blessing to give!

We must never forget that there is more to life than ourselves and even in the midst of difficulties we need to keep a heart to give. I am confident that the meds and equipment will be a blessing to those who received them, but I also know that I have been greatly blessed by being able to give them away. It is true -- it is more blessed to give than to receive!

False Guilt -- The Results

2011-03-06T17:34:00.001-07:00

When I do not properly respond to the unbiblical thinking of false guilt it will lead to more wrong thinking that eventually will show itself in my thoughts, attitudes, relationship, and actions. Here are some example of these four basic categories of results.

Thoughts

Bitterness -- I hold a grudge because my “rights” have been violated which leads to devastating relationships and anger. I see this often in bitterness towards God because of what He gave me in a disease or life circumstance.
Feelings of unworthiness -- People think how could someone love me if I am like this or have this disease. If I have had “this” happen to me then I am unclean or too sick for anyone to love me.

Attitudes

Depression -- When we convince ourselves that there is no hope it leads to despair.
Anxiety -- When we can’t fix it, take it away, or prevent it we allow worry to take control that leads to anxiety and a sense of overwhelmingness that has no hope or deliverance in sight
Anger -- This response can be internal or external as we buy the idea that life is not fair and that I should be treated better or my life should be easier and we respond with this emotion.

Relationships

Broken relationships -- unresolved sin, bitterness, depression, and basically all of the above will often times lead to broken relationships. Conflict that is based on circumstances or relationships lead to hurt feelings that left unresolved will lead to broken relationships
Fear of man -- we live our life based upon other people’s actions or attitudes rather than basing our life upon the fear of God and who our God is. For example, we allows someone’s view of us keep from doing what is best or what is Biblical.

Actions

Do not move forward (not on) -- We simply stop living because we are frozen in this guilt and to move forward in life we believe would only bring more guilt and hardship
Make bad decisions motivated by false guilt -- we make unwise medical decisions because we feel like giving up, or in our anger we stop taking care of ourselves to get back at someone. We abandon support out of anger because of unresolved conflict or because our guilt leads us to believing we are causing too much trouble.
Giving up -- we think “well, if life is going to be like this then I might as well not even try.”

Overall the result is a life lived that is controlled by this false guilt that negatively impacts almost every area of my life. It is a life lived in bondage rather than a life that is lived in freedom from guilt. What is great to know, is that we do not have to live here. There is a solution to living life with this false guilt. My next post will talk about the solution to false guilt.

(footnote: the reality is that most of the above mentioned results of false guilt are also results of unresolved true guilt as well)

False Guilt - The Source

2011-03-04T21:07:00.000-07:00

The first step in dealing with false guilt is identifying the source of that false guilt -- what is causing the sense of guilt on one’s part. This is important because there is true guilt that needs to be dealt with at times in our own life. By identifying the source or cause of the guilt, we will be able to identify whether it is true or false guilt. True guilt is a result of doing something wrong or sinful that has not been made right or resolved. False guilt is the result of hanging on to something that was not wrong or something that has been resolved. Here are a couple examples of true and false guilt:

False Guilt

Someone else has sinned against me, and I feel shame over it (abuse many times fits in this category)
Regret over past action or lack of actions that cannot be changed or resolved such as did I exercise with my wife enough that may have helped her lungs
Regret over decisions made with less information than I have today such as medical decisions of when to start or stop treatments
Guilt that I could have done more despite the reality of the progressive nature of Cystic Fibrosis
Guilt over something that has been forgiven already such as when you may have sinned against someone but you have asked for forgiveness already
Guilt over letting someone down
Guilt over being the “cause” of life hardships. Tiffany would sometimes have to deal with these feelings because of the implications that CF brought upon her family and me as her husband -- sometimes she would feel like it wasn’t fair that we would have to endure the CF because of her.

True Guilt

Shame over unconfessed sin against God or others such as deceit, violating trust, etc. . .
Unreconciled offenses such as arguments
Clearly evident bad choices not made right such as ignoring one’s health and not caring

The source of false guilt is my wrong thinking or feeling that I am responsible for something that I actually am not responsible. True guilt is my shame or guilt over something that I am responsible for and have not properly resolved. Identifying your source or cause of guilt is very important if you are going to be able to resolve that guilt. My next blog will deal with the result of keeping false guilt in your life and thinking.

False Guilt

2011-03-01T23:16:00.000-07:00

Today is the third month anniversary since Tiffany’s homegoing on December 1. It has been a good day with work being a busy day and some good meetings, some good conversations with family, and some good therapy at In-N-Out burger.

What I find as one of the most difficult things since Tiffany’s death is dealing with the what ifs and could of, should of thought processes. One of the dangers in dealing with death and in dealing with chronic disease is that it is easy to have a false guilt. What I mean by a false guilt is a feeling of guilt that is not legitimate. It is a feeling of guilt when we imagine of what could have been if we simply would have made different choices, choices that could have given more life or choices that in hind sight we think would have been much better than the choice we actually made. I believe that this false guilt can really lead to more heartache and difficulty in life that is not necessary. But it is so easy to question did I do everything right or should I have done more or in my case should I have done less with work and such.

The battle of the mind is probably the greatest battle that one faces with a chronic disease and great loss. Although the physical trials are hard, the mental trials are harder. Although the physical trials have great pain, the mental trials can hurt more. Although Tiffany and I never made it through the transplant process, much of the reading that we had done pointed to how difficult the mental aspects of the process would have been. It is important for us to recognize that there is this great battle of the mind that leads to wrong thinking that leads to false guilt that leads to discouragement, depression, anxiety, and choices that lead to a downward spiral of life. So the question then is, “How do I deal with this wrong thinking and false guilt?” My next couple of blogs will deal with this false guilt and how can we deal with it in our own lives.

The Will of God

2011-02-25T08:06:00.000-07:00

I wrote this journal entry in my journal November 9, 2010. Later that morning, we decided to take Tiffany back to the hospital. God was preparing me for the weeks and months ahead -- Don’t we serve a great God!

“I find myself going back to 2 Timothy lately. This book has become a real source of encouragement and challenge to me over the last couple of years. When I am going through hard times I usually come back to here as I have for the last three days. I didn’t get pass the first verse.

Paul, an apostle of Jesus Christ by the will of God, according to the promise of the life which is in Christ Jesus.

Two things jumped out at me today.

1. Paul’s position of life was established by the will of God. My position and status of life is clearly founded on the will of God. Tiffany and I are in the situation that we are in with her health by the will of God. I am president of IBC by the will of God. It is not my will but God’s will that I am where I am.

2. Paul lived based upon the promise of life in Christ. I must live my life based upon the promise of life which is found only in Christ. My identity is not found in myself but in Christ alone. Because of having this eternal perspective it gives me a foundation for living that is not myself but is Christ. Who I am and how I live must be rooted in Christ. I am willing to faithfully endure because of the Life that Christ gives now and in the future. LIfe is not according to me but according to what Christ has established.”

The Value of a Good Nurse

2011-02-14T22:53:00.000-07:00

Today I was reminded of the value of a good nurse especially a good home health care nurse. I was out to eat with a friend when I saw across the restaurant one of Tiffany’s former home health care nurses. This nurse is probably one of the best nurses that Tiffany had in our marriage and definitely the best home health nurse we ever had. She was great because she educated us and didn’t just tell us what to do. She taught us how to live better with all of the I.V.s and struggles that come with at home care. She is the one that taught us how to be independent with the port. Not only was she great because she educated us, but she was great because she genuinely cared. It has been at least two years since we saw her last but yet she remembered me and especially Tiffany. Although it was hard to tell her of Tiffany’s death, it was a blessing to hear her remember Tiffany. She took time to listen to us today and the many visits that she was at our home. When it comes to dealing with a chronic illness, there really is nothing like a good nurse. They are of great value!

Midnight

2011-02-13T22:18:00.000-07:00

The below was Tiffany’s second to last journal entry before she passed away, and I shared it with our church family this morning. I think this entry really points to the struggle that one faces with chronic illnesses but also reveals the hope and quiet rest that Tiffany had in God. Sometimes we think that God is only working if He gives us deliverance, but God is at work in our difficult circumstances and gives us His grace, strength, and peace.

“often i find that night time is one of the hardest times for me. there is something about the stillness, the quietness that brings thoughts and emotions. last night was a time of some frank discussions with my Lord.

there were some tough questions that He and I talked through....

why did he allow the cf? why was i the one blessed with it? why couldn’t i just be normal and be able to enjoy a quiet life with my hubby-looking forward to many years together? why were we faced with these tough choices? why is this sooo hard? why can’t it just be easy? i don’t think i can do this? i don’t want to live life like this?

it was a time of wrestling, of tears, of frustration, even sometimes anger and yet His quiet peace permeated it all. i don’t have all of the answers and much is still raw, but i know i can rest in His grace-it is sufficient. this is not out of his control...he is ordering each and every step. There were no new earth shattering revelations-just peace, a peace that it hard to explain-a quiet rest.”

Friday Fill-in -- Delighting in the Simple Things

2011-02-11T08:39:00.000-07:00

Sometimes in the trials of life like what Cystic Fibrosis brings you need to just take time and delight in the simple things. When we go to one of favorite vacation spots our first and last stop is to a little store that sells ice cream, fudge, and huge variety of carmel apples. That little store has made a lot of money off of us! Tiffany’s favorite was a white chocolate carmel apple covered in cinnamon. That with some coffee made for a great treat. Take time to delight in the simple things of life.

Never Thought About It Before

2011-02-05T22:56:00.000-07:00

I think one of the greatest joys in marriage is when you do something for the spouse that they really enjoy or appreciate. I just loved doing things for Tiffany whether it was something to do with her health or it was just everyday things. I especially enjoyed doing things for her on special occasions like Birthdays and such. One of my really fun things would be to fix her a fancy steak dinner and get all of her nice dishes out and use them. It was just fun to watch her and to enjoy showing love to one another.

The day after Tiffany’s burial, her brother and I went by the old tree where Tiffany and I got engaged, and we noticed that one of the huge branches had fallen down in some past storm. The following day we went down and cut out the branch (about 18 inches round and 15 feet long) and brought it up to the ranch house. I had decided that I wanted to make a temporary grave marker so that there would be more than just a 3x5 card there until we got a permanent headstone. Well, over the course of the next couple weeks, I spent many hours cutting a flat surface, sanding down the 2 ft section I had cut off the log, routing in her name and dates into some cedar that I mounted on the log, and putting it all together. As I was working in my Dad’s woodshop routing her name in the cedar, I realized something that I had never thought about before -- Even following your loved one’s death, you still enjoy doing things for them.

Is It Worth It?

2011-02-01T22:45:00.000-07:00

Another question that ties right in with the question of “how could you marry someone with a terminal disease” is the following: was it worth it marrying someone who had Cystic Fibrosis? This once again seems like a pretty bold question but yet a question that some may be wondering if they are in a dating relationship or a marriage with someone who has a terminal condition. Not everyone gets to choose whether they will marry someone with a terminal disease because the disease may not show itself until after marriage. One of my good friends and roommate in college lost his wife while they were still in their twenties but yet I was supposed to be the one to lose his wife first. I also want you to notice that the question is not “Was” it worth it? but rather the question is “Is” it worth it?. You see, being married to someone with CF is not over for me. Tonight I went to starbucks and looked at pictures of Tiff on her mac as I took time to just stop and contemplate on the two month anniversary of her homegoing. Sometime soon I get to go to the CF clinic to deliver meds that can still be used by others -- being married to someone with CF does not end with the end stage of CF--it is a continuing effect in my life. So, looking back not only over the last two months but also at the last 17.5 years that I knew Tiff and looking forward to the years ahead that God may give me -- Is it worth it to marry someone with CF or a terminal condition?

I believe a key component to answering this question is having the right perspective on CF. I have read many blogs by CFers who live lives of anger and frustration and bitterness toward Cystic Fibrosis. The reality is that it is not an easy disease and that it does kill people much earlier than we would ever desire, but CF is not something to be angry about. I believe one of the problems is that people define themselves by the circumstances that they find themselves in rather than finding their identity in Christ. For sure, CF shaped Tiffany’s life, but more than the actual CF, Tiffany’s response to it shaped her life. Tiffany was not defined by CF, but rather she was and is defined by Christ and her faith in Him and Him alone. About a year ago, I had to work through some of these issues again. I found myself getting frustrated with CF and the hardships that it was bringing into Tiffany’s and my life. God worked on my heart again and brought me to the place where I could honestly say “Thank you God for giving Tiffany CF.” It is counting it all joy in the difficulties and trials of life not because pain and suffering and limitations are fun or “happy” occasions but rather that I can rest in God’s design for my life and my wife’s life. That God is using trials to bring us to a greater conformity to Him -- to teach us that we might change and give up our will to His will.

So I sit here in my house alone (o.k. our dog is keeping me company) having gone through the ups and downs of CF, having spent more nights in the hospital than I care to remember, having my wife die as I held her hand and quietly slip into glory, having experienced much of what CF brings and I ask myself, “Is it worth it?” YES!, it is worth every joy, trial, up, down, thrill, love, tear, loss, gain, difficulty, and experience as CF was uniquely used by God in Tiffany’s life to conform her to the image of His son and to conform those around her to the image of His Son. I have been changed forever by choosing to love that cute girl from CO who had a terminal disease -- It was worth it and I would marry her again!

One of our favorite places

2011-02-01T21:53:00.000-07:00

What Great Love!

2011-01-31T22:20:00.001-07:00

Here is a chorus for which a good friend of mine wrote some music. We sang it this last Sunday morning, and all I could do was weep as I thought of Tiffany enjoying the boundless love of Christ in His glorious rest above!

O the deep, deep love of Jesus, vast, unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current of Thy love
Leading onward, leading homeward to Thy glorious rest above!

by S. Trevor Francis

How Could You?

2011-01-30T21:40:00.002-07:00

When I think back to my college days and when I first started dating Tiffany I had a number of issues and questions to work through. I remember one of the guys in the dorm asked me how could I marry someone with CF who would die early. Although it was probably an innocent question at the time it was also an offensive question that someone would even ask it. The reality though is that it was a question that needed answered. Perhaps now I am better prepared to answer that question than I was 16 years ago when we started dating.

When I asked my father-in-law for Tiffany’s hand in marriage, and we talked about the future ahead I simply told him that I loved his daughter. Tiffany and I were hitched 27 days after college graduation, and we were married for thirteen and a half years and one day. When I think of all the years that we spent together, my mind and heart are flooded over with such great memories. Memories of love, laughter, hardship, CF clinics, a little apartment, new houses, her grand piano, music, piano playing, recitals, ministry, family, traveling, IV treatments, vacations, crying, talking, planning for a life together, planning for dying young, dreaming, making her music CD, prednisone, grad school (in our thirteen years I think we only went one year when one of us was not working on a grad degree), business, choosing to slow down, Big Bear, the beach, college students, more health issues, diabetes, progressive issues, chronic illness, enjoying little things, God’s grace, ranch life, brandings, rural life, sinus surgeries (we lost count, around 5-7), city life, disappointments, successes and the list really could go on for awhile. As I look back, I am faced with that question -- how could I marry someone who I knew had CF and would most likely die young -- I love her. Yep, that pretty much sums it up -- simply put -- I love her! That is how I could marry someone who I knew in all likelihood would get to worship God face to face sooner rather than later.

I.V. organization part 4 -- Ports and when to get one

2011-01-26T23:29:00.000-07:00

This is was my last post that I wrote last summer for the series on I.V. organization. Tiffany had posted all the other entries but had not gotten around to posting this one. If you are interested in reading the others you can click here for the July entries and you will find 3 other entries about organization.

This was a tough decision for Tiffany and I -- when do you get a port put in. A port is a semi-permanent (Tiff’s first port lasted around 4 years) line that is put in with a reservoir that sits right below your skin that you access with a needle. To start IVs your simply put the needle into the port and you are good to go -- you are up and running in 15 minutes. PIC lines are temporary and have to be placed in every time you do IVs. Usually they are now considered a surgical procedure so you have to get admitted to the hospital as an outpatient to have it placed. Tiffany’s first PIC line after we were married was put in by her CF nurse in the office -- they don’t do that anymore. PIC lines are more fickle but then again, you don’t have something permanent in your body.

The hardest part of the decision is the feeling that your are giving in again to CF and that you are progressing. To have to need a port makes you feel like you are in a different stage of treating the disease. We finally based our decision on the number of times that Tiff would be on IVs. We felt like if she was only on them once a year, it was worth the hassle of the PIC line so that everything was temporary. When she needed to be on IVs more than that we decided to get the port. We are very thankful that we made the decision to get it. This year Tiffany has been on IVs three different times. Of the last 7 months, she has literally spent 50% of the time on IVs -- having a PIC line now would be miserable. Once she had to be on IVs for 5 months to treat mico-bacteria. The port gives us convenience and speed of therapy. We can go to the Dr., decide to go on IVs, and have them running that very same night -- that is usually not possible unless you check in to the hospital if you have a PIC line.

For us, the port has given us more control and convenience and it is when you reach that place with treating CF, you should strongly consider getting a port, because the reality is -- CF is progressive and you probably have reached the next level of treatment to maintain your health. That doesn’t mean you are giving in, it just means you have to be more aggressive in the treatment in order to stay healthy -- and that is the goal -- staying as healthy as is possible in God’s plan.

So this concludes what started out as a simple explanation of our IV organization but turned into a diatribe. Would love to hear your tricks of the trade on how you organize and what you do to help maintain your health!

Updated title, description, and about me

2011-01-24T22:29:00.000-07:00

Well, I was advised to update the title, description, and “about me” section so I have made a stab at it. Hopefully it clearly communicates what the blog is and what it is about. I found the following description of what Tiffany hoped that this blog would accomplish. She wrote this back in April.

“Starting this blog has been a long process--a long process in evaluating whether the transparency necessary for a blog of this nature would be worth it. A good friend of mine (and many others) has been challenging me to share with others what I am learning as I live the life that God has given me with Cystic Fibrosis. The intention of this blog is to inform others about CF and practical ways of dealing with it, to encourage a dependence on our only sustainer (God), and to promote a Biblical view and response to life. I hope that as you read what is in my heart, that it will help you in your life.”

I am looking forward to carrying forward what Tiffany began.

Our Inner Strength

2011-01-23T22:44:00.002-07:00

So where does the inner strength come from in order to handle the difficulties of life. The more I understand what all Tiffany went through and understand her personal strength the more I am coming to understand where her inner strength came from to handle those difficulties. Tiffany’s greatest strength was not physical with the ability to fight but it was an internal strength with the ability to rest in God. I think God specifically had her studying Ephesians and the gospel because understanding who you are in Christ is that key. Eph 3:14-20 are key to understanding.

It is by understanding who we are in Christ that we are strengthened. It is according to the riches of His grace and in the context of Ephesians it is according to how much we overwhelming have in Christ because of who He is and what He has done for us. My strength is not rooted in who I am as a person, but it is rooted in who I am in Christ. When I understand these great riches of who I am in Christ, then that strengthens my inner man because my identity is not based in me but in Christ and His grace. Understanding who I am in Christ helps me understand the love of God and then I am content and willing to do God’s will for me life. That road may not be easy, but when I know how rich I am in Christ I love him more and am willing to follow him anywhere.

What is needed most to handle the trials of life such as a chronic disease is not physical strength but rather inner strength. Our greatest battles were not physical but rather emotional and spiritual. When I understand this reality, then it helps me focus in on what I actually need. I need to know who I am in Christ and what I have because of my faith in the gospel of Christ that salvation is by faith alone in Christ alone. The key to battling any type of physical hardship is the inner battle -- I must endeavor to know my God!

My First Night

2011-01-16T23:52:00.000-07:00

Written last Wednesday.

Last night was my first night alone since Tiffany’s passing. I miss her. Because I had a dinner appointment with work I didn’t get home till 8:30 so that made the night go quicker. Honestly, I think the day was worse anticipating the night than the actual night was. It was not a night of emotional breakdowns but rather it was another step in the finality of my life situation that Tiffany is no longer here. How weird it was to drive up to my house at 8:30 p.m. with having not been at the house since I left for work in the morning. I could never do that before if I was going to properly take care of Tiffany these last six months or it would have meant that she would not eat till 9 p.m. My schedule change so far has been one of the biggest changes. CF took up so much time in our life. It was not something that was despised or to be mad about it, it simply was our life. I also see now that my life choices have to be much more deliberate because before Tiffany’s health would dictate so many of our choices while now my choices are simply dictated but what I choose to do or not do.

Friday Fill-in Catch Up -- Never Thought About It

2011-01-02T21:34:00.000-07:00

I am going to start a new series of blogs that will come and go as life happens. They are called “Never Thought About It.” You see, when you live with someone who you know will most likely die at a young age you have some very interesting conversation, and you think through many things about what life will be when the Lord finally does take that person home. This series of entries will be about those things that I never thought about -- some will be serious, some will be funny, and who knows what the others will be because I simply don’t know what they will be as I have never thought about it.

One of my first ones happened the Saturday after Tiff’s memorial services. I had just dropped my brother-in-law off at the airport, and I needed to stop somewhere for lunch. Well, right now I am going through a lot of firsts without Tiffany and that was the first time that I went out to eat alone following Tiff’s death. I decided to go to Taco Bell (not because I really wanted to but because that has always been one of Tiff’s favorites) and finished eating. I had a two hour drive ahead of me, so I decided that I had better use the bathroom before I leave. Who in the world is supposed to hold your drink for you when you have to use the bathroom at a restaurant and you are alone? I am not sure as I never thought about it before!

The Next Right Thing

2010-12-30T00:12:00.002-07:00

I wrote the below a couple weeks ago as I considered the future. Tomorrow I return home for the first time since I left for Tiffany’s memorial service in CO. I have spent the last couple of weeks with Tiffany’s parents in CO and my family in CA. As I look forward to the next couple of weeks, I am sure that I have some tough days ahead, but I also know that God’s grace is sufficient. I must be willing to do the next right thing.

I find myself in a very interesting and difficult time right now. It has now been two and a half weeks since Tiffany died, and i am still working through it all. I have a feeling that this is going to take awhile! So the question is, what do you do now when God in His divine plan chose to take the love of your life home? You simply do the next right thing. I have decided that I don’t have to have all of life figured out, and I don’t have to make a whole bunch of decision -- I simply need to do the next right thing -- that which honors my God, that which is wise and prudent, and that which keeps me focussed on my God. Tiffany and I had many times when because of health or just simply because of life, we had to choose to just simply do the next right thing. We could not see far enough ahead or the circumstances were just changing too quickly. So what specifically is the next right thing for me -- it is taking the time to work through Tiffany’s death, collect myself physically, spiritually, and emotionally so that I am prepared to go back to “normal” life the beginning of January. It has been good for me to be away although it has been very hard at the same time. God has used my time away to do His work in my life to prepare me for this next stage in my life.

Friday Fill-in

2010-12-24T17:45:00.000-07:00

Friday Fill-in was one of Tiffany's favorites -- usually just some random or humerous thoughts --

Sunsets in CO are beautiful -- the wide open plains with the mountains 90 miles away make for some gorgeous scenes -- they remind me of my wife.

I still really, really enjoy doing things for Tiffany.

There is nothing quite like decorating for Christmas on Christmas Eve.

The simplicity of white lights as the only decorations on a tree create a great environment to stop and remember.

This One Breath -- what to do with it?

2010-12-20T12:39:00.000-07:00

I have thought much about what to do with the blog that Tiffany began earlier this year. She had been challenged by a good friend to write and to transparently talk about her life with a chronic disease like CF and just about her life. Tiffany started writing and then took a break to evaluate what she was doing. I remember sitting in our loft and talking about the reality that if the blog was going to work, then she simply had to be more transparent -- it was her life and how she biblically handled her life situation that was going to have impact on people’s lives. So that began a process when she started to transparently share about her life. For the last 10 months she has been sharing about her life with many of you. The reality is that telling Tiffany that she needed to be transparent was a whole lot easier than me being transparent. Although I don’t know entirely how I will use the blog, I have decided to keep the blog going. Here are some of my present thoughts on how I will use the blog.

Continue sharing about life with a chronic disease -- although it will not be as effective as the person who is going through it, the Lord gave me a front row seat into someone’s life that had to deal with it.
Share about the reality of losing your love, your best friend, your wife, and your constant companion.
Share what God is doing in my life.
Share some of Tiffany’s writings that never made it online -- some things were too personal or were written in her paper journals or were written long before blogs existed.

I would love to hear from others on how you think this blog should be used or how it would be helpful in days and years ahead.

Another Blessing

2010-12-18T20:42:00.000-07:00

Last night was a great privilege to go to the Chandler Children's Choir concert. I am over in CA with my parents and found out this week that they were dedicating last night's and tonight's performances to Tiffany. Tiffany had played the piano for them for the last year and a half. So yesterday, my dad and I made the 7 hour commute over to Phoenix went to the concert and then came home afterward and got home around 2 a.m. The kids did a phenomenal job. Tiffany would have enjoyed the concert so much. Here is a song that they recorded earlier for us as a family with Tiffany's home going. They sang it last night and is called Dona Nobis Pacem (God Grant us Peace). Thank you CCC for dedicating these performances to Tiffany and for all your support that you have shown.

Real Gold Fears No Fire

2010-12-16T01:12:00.000-07:00

Below is my tribute to Tiffany which was read at the two different memorial services in AZ and in CO. The complete booklet with many other things can be seen here. I plan in the days ahead to share more thoughts about the last two weeks. God is good!

Tiffany Leigh Davis Brock

1975-2010

“Real Gold Fears No Fire”

A Tribute to My Wife

by David Brock

Thirteen and a half years ago, I began a wonderful new adventure in my life when on May 30, 1997, I married Tiffany Leigh Davis. As I have looked back these last couple of days over our relationship, I have become even more thankful for the woman that God placed in my life. Four years before we got married, we met in fresh- man speech class at Bob Jones University. Our teacher Mrs. Waite started the class explaining what the class would entail and then she mentioned that the relationships formed in freshman speech could very well last a life time and that it was more than likely that some of those friendships would lead to marriage. Well, as a typical freshman guy, I took her suggestions to heart and began surveying my options and the competition in the class. Then, each of us freshman students had to give a quick impromptu speech about ourselves and what we did with our summer. When Tiffany got up and gave her speech, I was impressed—she was a gorgeous blonde, from the West, grew up on a ranch in Colorado, had experience with youth camps, and on top of all that, she played the piano. From that very first class period of speech class, I began a pursuit. I had a strong idea that Tiffany would be a woman that would be able to stand with me in ministry and life. I will never regret that pursuit. A year and a half later, we started dating. (Our fist date during that first semester of speech class did not go well, so I waited another year before I would ask again.)

Right after Tiffany and I started dating, my parents came to visit at the college; I stayed with them at the guest room, and they had a “little talk” with me. They told me up front that I had better not mess with the emotions of this girl, and that if I wasn’t serious and wasn’t willing to make the sacrifice of being married to someone with Cystic Fibrosis and face the reality that I would probably be a widower early on in my life, I should stop the dating relationship now and not hurt Tiffany. My internal response screamed, “Wait a second! You’re supposed to be on my side!” In reality, my parents were on my side as they were trying to protect Tiffany from being hurt and me from not counting the cost. I spent the next three months asking myself if I could love Tiffany the way that I needed to love her and if I was willing to be a widower at a young age. As our relationship grew, I found I did love Tiffany; and I decided that just a couple years with Tiffany would be worth any cost. From Tiffany’s perspective, she was trying to decide if marrying me would be fair to me. You see, she was living the Cystic Fibrosis life and knew the hardships that were involved. I am so glad that she said yes to me!

We got married twenty-seven days after our college graduation. Little did I know then of Tiffany’s depth or the complete privilege it has been to serve next to her for thirteen and a half years. We have been through many trials and difficulties: many of which no one but she and I know, and we have been made better as a result of those trials. You see, Tiffany was not defined by Cystic Fibrosis, but yet it helped shape her to be the woman of God that she was. When you live in light of the fact that you are going to die soon, you live life much differently. She did not live a life for herself, but rather, Tiffany lived a life for her God seeking to please Him with her life and responses to what God had placed in her life.

When I think of my wife, I think of these things.

1. Friendship – From the start Tiffany wanted our marriage to be a wedding of best friends. I can definitely say, I married my best friend.

2. Passion – Tiffany’s passion for God, for me, for her parents, for her brother, and for her future sister in-law burned deeply in her heart; and those passions extended to those she interacted with day after day.

3. Faithfulness – I am thankful for Tiffany’s faithful dedication to our marriage, life, work, and family. And I am thankful she faithfully fought for her health.

4. Perseverance – When Tiffany was healthy, she would have to spend four to six hours a day on daily treatments. When she was sick, she would spend all day trying to get healthy with treatments and rest. When she graduated from ASU with her Master of Music, she was on IV treatments from a recent hospital stay. We did an IV treatment on the way to graduation in the car; she unhooked herself, and then she went and marched in graduation. I lost count of how many recitals, performances, and concerts she played for while being in the middle of an IV treatment.

5. Always Learning – Tiffany loved to learn. Even this semester she was taking an online class in Finale, a music notation computer program.

6. Gracious – Tiffany always had a kind word even for those that would sometimes hurt us in ministry.

7. Simple Elegance – Tiffany dressed, decorated, and lived with a simple elegance all her own.

8. Eclectic – It was hard to peg exactly what Tiffany liked as she liked such a wide range of things, but the eclectic always had a purpose: “It makes me smile” would be her answer each time something new but possibly a little strange would show up in our home.

9. Forgiving – Being married to me gave her much practice in this area, but she was always ready to forgive.

10. God Dependent – Tiffany filled her heart and mind with Scripture and looked to God to get through the emotional and physical trials that come with living with Cystic Fibrosis and being married to a pastor.

11. Child of God – When she was seven years old, she placed her faith and trust in Christ not depending on any church, work, or personal goodness but rather in Christ’s death on the cross to give her eternal life which she is enjoying today. Tiffany’s identity was and continues to be that she is God’s child. Because of this truth, I find great hope and comfort in knowing I will see her again.

12. Patience – Even when she wasn’t feeling well, she was so patient. I remember a night in the hospital when one of the CNAs was emptying trash on the pod, and you could hear him coming as he would go into a room at 3 a.m. and empty the trash in a very loud way. One night after we had endured this a couple nights in a row and he came in and started making a racket in our room, I sat straight up in my cot that was next to Tiffany’s hospital bed and was about to give him a piece of my mind when I felt Tiffany’s hand on my chest. She was saying, “It’s okay David, go back to sleep.” We had many “it’s okay, David” moments in our marriage! She taught me patience.

13. Loving – Tiffany sacrificed of herself for me, her family, and those around her even when it cost her health and strength. She chose to love and give of herself. She lived in the moment by loving at that moment.

14. Excellence – Tiffany practiced her piano for hours upon hours so that she would be effective at facilitating worship, accompanying, and teaching. She gave 100% to each and every opportunity.

15. Thankful – Complaining wasn’t something I heard from Tiffany; and even at home in the middle of doing all her treatments, she expressed gratitude for the life and family that God had given her. She would thank everyone in the hospital for how they would help her whether it was cleaning her room, taking blood, or the numerous visits from a variety of doctors and nurses.

16. Humble – Tiffany was always thinking of the other person and would not want to inconvenience anyone. This humility that looked out for others came from her dependence in a God Who she knew looked out for her.

17. Musician – Without a doubt, Tiffany loved music and loved being able to com- municate through music. She essentially became an expressive extrovert through her music and would go back to her quiet introvert when she was done playing. Her most expressive faces shone brightly when she was able to communicate truths through the music so

that those truths would penetrate the listener’s ears.

18. Partner – I often say that Tiffany authenticated my ministry. She was my job security because if you guys got ridof me, I would take her with me! And frankly, since no one wanted Tiffany to go, I always had a job. Both of us grew up in the West surrounded by cattle and horses and western- themed lives, so we understood the concept of “being a good partner.” Tiffany was just that: my cowgirl and my “partner.” Come branding time at the ranch, she and I made pretty good flanking partners.

When I think of Tiffany’s focus in life, I think of these things. They are qualities of a life well lived. But more than all of these qualities, when I think of Tiffany, I think of my God. Tiffany endeavored to reflect Christ in her life on a daily basis, and I couldn’t help but see God in her each and every day. The depth of Tiffany’s personal walk with God was even greater than I knew as I have begun to look through her personal journals. She was so in love with her God and desired to serve Him with her life and to be faithful to the end. She was completely dependent on God to face the trials of life and to give her the grace that was needed.

The last challenge that Tiffany gave me came after she had been moved to ICU. She had gotten to the place where talking was too hard and was taking too much energy so she was using sign language which I did not know. Finally she took a deep breath and said through the BIPAP mask, “Hope in God.”

What does it mean to hope in God? It means that I can place my confidence in an all-mighty God Who will perform His promises in my life and will be the Sustainer of my life. It means that I have confidence that because Tiffany repented of her sin and accepted Christ as her Savior, I will see her again in Heaven. It means that no matter what comes in life, even the death of the love of my life and my best friend, God can and is to be trusted and loved. Having hope in God means that my confident expectation must be in God and God alone. I hope that you will join me and accept Tiffany’s challenge: “Hope in God.”

My mom would often say that she didn’t raise me to be a bachelor. She said this not because she pressured me to get married, but that simply my predispositions in life were not conducive to the single life. I told my parents Wednesday night hours before Tiffany went home to be with the Lord that although they did not raise me to be a bachelor, Tiffany has spent the last thirteen and half years preparing me to be a bachelor. Our life verse for our marriage was Proverbs 3:5-6 which says that we must trust in God with all of our heart and then depend upon Him to direct our lives. Tiffany lived that life of trusting God for the future, and we are content with God’s design for our life. Thank you, Tiffany, for being my love, my best friend, and God’s agent in my life to prepare me to be better for His service. I love you mountains and mountains, oceans and oceans, and valleys too!

Tiffany's Memorial Service

2010-12-03T16:14:00.000-07:00

Praise Update

2010-12-02T21:26:00.000-07:00

Dear Family and Friends,

For the last couple of weeks I have been asking you to pray for Tiffany and her health. Praise God that we no longer have to pray for her health as she is worshiping our God face to face. Last night about 11:45 God quietly took her home to be with Him. She was ready and had been getting me ready for this time for awhile now. What a blessing that she no longer struggles with getting her breath or has to spend countless hours in therapies. We had been praying that God would give her new lungs and He did better than that and gave her a glorified body. This last Sunday she told me that going to heaven would be a cool birthday present as her birthday is this coming Sunday. I told her I couldn’t compete with that gift. You see, I was going to give her a really nice dress watch that measured time, but because of her faith in what Christ has done for her on the cross, God gave her the gift of eternal life.

The last couple couple of days have been so sweet. To watch someone who is ready to meet her Creator comfort those around her and look forward to Glory is a beautiful thing. What a grand time we had as we worshipped God (it was a joyful noise in there at times with an emphasis on noise, but Tiffany was always more concerned about the heart than the talent). Her whole family was here by Tuesday night, and we just had a good time as a family with Tiffany.

For almost 10 years, Tiffany has been on the prayer request section of our church bulletin for her health, and God has answered our prayer. Now we no longer have to pray for her, but now we can praise God for how He answered prayer, and how He worked in her life. This is how we can praise God:

that God gave her better lungs than UCLA could give by giving her a glorified body.
that God preserved her life till all her family came and gave her the strength to give a very sweet time together as a family.
that God provided excellent medical care with people who were professional, competent, and compassionate.
that God loved her more than we could ever love her.
that Tiffany accepted Christ as her Savior as a seven year old girl depending on Christ to forgive her sin and give her eternal life.
that God strengthened Tiffany and me and her family in the grace of Christ Jesus our Lord.
that God gave us as a family a sweet time of fellowship and encouragement.
that Tiffany’s testimony was untarnished and pointed people to Christ to the end with the medical staff and those all around her (even the last day she was thanking medical staff every time they would come in and do something even if it caused her pain).
that God was glorified by Tiffany’s life and by her death.
that God’s grace is sustaining me today, tomorrow, and through the next couple of months.

Thank you so much for your love and support to Tiffany and I through these last couple of years and especially through these last 3 months. God has been so good to us and to me by giving me a wife that loved me passionately and more importantly, loved God passionately. As Tiffany challenged us -- Hope in God.

With love and appreciation,

David Brock

Prayer Update on Tiffany

2010-11-30T08:16:00.002-07:00

Dear Family and Friends,

We are through another day rejoicing in the grace of Christ Jesus our Lord. I am so thankful that we do not have to go through this on our own but that we have a God who is in control, strengthens, and gives peace. What a blessing it has been to hear from so many people! Tiffany had fun last night reading emails, blog posts, and looking at all the facebook posts. Thank you for continuing to encourage her!

Yesterday actually went much better than we had thought that it would go, and we have avoided the ventilator which is a huge blessing. Her numbers held steady throughout the day, and we saw some improvement with her breathing although it is now harder for her to breathe without the BIPAP. She has done well seeing that they did not start the new IV treatment plan till yesterday afternoon so the next couple days will be critical in seeing how her body responds. She slept well last night for which we are very thankful! Today will basically be just continuing the IV treatment and continuing with her respiratory treatments. They may also take out her PIC line due to the MRSA infection which means they would adminster the drugs through perefiral

It has been an amazing thing to watch someone in such difficult health situation simply be content with God's plan for her life. Early this morning we were talking after one of her treatments and this is what she told me -- "Hope in God." We have a confident expectation in what God is doing in her life and our life together. Our Hope is not in a Dr. or even in her ability to fight this infection -- it is simply in the King of kings. What a great God we serve and what a blessing to watch Tiffany hope in God and then encourage me to Hope in God. So I pass it on to you -- whether it is with Tiffany or your own life situations -- Hope in God!

Here is how you can pray today --

1. If they take her PIC line that her veins would handle the IV drugs through the peripheral IVs. This would help her body be able to fight the infections for a couple days and then put in another central line.

2. That God would give her body strength to fight the infections as the drugs start working

3. That we would be strengthened in the grace of Christ Jesus our Lord

4. That God would give family a sweet time of fellowship and mutual encouragement

5. That God would use Tiffany's testimony to the medical staff and others

Here is how you can praise God with us today --

1. Good sleep last night.

2. She has been able to continue eating

3. She is not on the ventilator

4. That we have a God we can place our hope in

Once again, I can't express my gratitude enough for the outpouring of love and support. We serve a great God!

Hoping in our God,

David and Tiffany Brock

Prayer Update for Tiffany

2010-11-29T12:13:00.002-07:00

Dear Family and Friends,

We would covet your prayers at this time. Last night about 2 a.m. we made the decision to have Tiffany taken to ICU because her breathing worsened and the infection in her blood has come back. The present theory is that the MRSA in her lungs is reinfecting her blood with MRSA which then takes a toll on her body and makes breathing very hard. The decision to go to the ICU was initially made as a proactive cautious choice but as the day has progressed it has proven to be a good decision as things have worsened. She is breathing with the assistance of a B-pap machine which helps with the inhaling and exhaling. At this point she seems to be responding well to that extra help. This afternoon we will see how she is doing but the next step is to put her on a ventilator. The reality is that the prognosis is not good if she goes on the ventilator due to the major infections. They have started her on a cocktail of antibiotics to address all of the infections. We should know in the next 24 hours how her body is going to respond to these treatments. As I write this, she is resting quietly.

Tiffany is actually doing pretty good emotionally. She is content with God's design for her life. We are simply resting in God and His perfect plan. Please pray that God would accomplish His plan in our life.

Here are some specifics you can pray for --

1. That her body would respond to the drugs positively and we could avoid the ventilator.

2. That we would be strengthened in the grace of Christ Jesus our Lord

3. That God would give safety to family who are traveling in.

4. That we would have the peace of God.

5. That God would accomplish His perfect plan.

Here are some things to praise God for --

1. The decision to come to ICU was made at a non crisis time which is enabling better care today

2. Tiffany's Mom stayed here after she and her husband visited for Thanksgiving

3. That God is God and we are not!

Thank you for all of your love and support.

David and Tiffany Brock

Tiffany Hospital update 11-27 by DH

2010-11-27T17:17:00.000-07:00

As many of you CFers out there know -- hospital stays can be hard and drawn out much longer than you would like. I think that is true of this one. We were not anticipating being here this long but I guess we must simply rest in God's timing in it all. Her lung functions were down to 22% which is a drop from when she went in to the hospital. We have yet to get her transplant evaluation process rescheduled. They told me they couldn't tell me till Dec. 8th when it would be scheduled, but I am not sure why -- I will probably write them and find out. The hard part now is patience because just when you feel like you made significant process your body doesn't cooperate. This is definitely a weird hospital stay that we are looking forward to be over. Below is an email that I sent out to family and friends today by way of update. I am going to try and post more often -- but you know how it goes in the hospital. DH

Dear Family and Friends,

As Thanksgiving has come and gone as an official holiday there is still much to be thankful for as we move forward. We were not able to go home for Thanksgiving, but I am thankful that Tiffany’s parents were able to come down for the week and to celebrate with us at the hospital. A family in our church provided us with a meal and we feasted in the hospital room even with enough left overs to have a turkey sandwich for dinner. God continues to give His grace in supplying strength, patience, and hope (confident expectation in God).

It has been an interesting week and a half since the last time I wrote. It seems that so much but yet so little has happened. Tiffany continues to make slow progress with some of the issues that I mentioned last time but especially with the C-Dif colitis. We were hoping to go home by Thanksgiving but Tiffany’s body is still fighting so much that she has not regained the strength or lung function that is needed in order to go home. It has been a hospital stay with so many ups and downs. Just when we think it is getting significantly better, something else comes up. They have been very careful to watch for other infections and to this point we have not found any. It is evident that her body is still fighting infections that we assume to be the existing MRSA, C-dif, and pseudomonus because of the fluctuation of her white blood cell count and some fevers. They did another lung function test earlier this week, and it has gone down since she has been in the hospital. That is not surprising seeing all that her body is fighting, but we would like to see a turn around soon in her lung functions.

Here are some praises --

No new infections have been found
We have received great medical care
Tiffany’s parents came for the Thanksgiving week
Tiffany’s mom is staying here helping for the next couple of weeks
opportunities for spiritual conversations

Here is how you can pray --

The infections be continued to be killed off
Increase in lung function
Re-scheduling of her transplant evaluation (we won’t find out till December 8th if we are able to do it in early January)
Tiffany’s body be strengthened
Patience through the slow process

Thank you for all of your prayers and notes of encouragement. We continue to be amazed at the support that we receive from so many. You may be asking when will Tiffany get out of the hospital -- the answer is simply that we do not know. We are simply taking a day at a time, and when the time comes for her to go home, we will be grateful.

Trusting in our God,

David Brock

Friday's Review

2010-11-19T18:32:00.000-07:00

Finally, a quiet day. Tiffany has spent most of the day sleeping -- her nurse has been great and has kept people out and grouped all of his things together to allow Tiffany maximum sleeping time. Last night was a short night with many interruptions so sleep today was greatly needed. A quiet day in the hospital is a good day which usually means no new problems and no new treatments and that is basically the case for us today. They are adding one IV drug to her regimen to help address the colitis but that is all.

It was neat today to run into a couple of the folks who helped take care of Tiffany the last hospital stay. The lady who cleaned her room last time came by to visit and then I talked with a nurse aide in the hallway for awhile. Tiffany sure does make an impact on the people with whom she interacts!

Below is another letter that I wrote to friends and family giving them an update on where Tiffany is with her health. It should give you an idea of exactly where she is -- I had meant to post it earlier but alas it did not happen. Looking forward to a quiet and uneventful weekend. DH

Dear Family and Friends

Well, what a week it has been! Tiffany has proven to keep the doctors guessing with plenty of theories and not much success at knowing exactly what is happening until the last couple days and even then some things we don’t know. Initially when we came in it was for things going on with her abdomen, hands/feet, and throat with some difficulty with breathing and a fever. At first they thought that it was all connected but now it appears that it is not connected and they found more issues in the testing process. In the past week I think Tiffany has had more tests than what she would care to go through again but that is all part of the process when you are not sure what is going on with your body. I think the most doctors we had in one day was 8 and most days we see 5-7 of them. Yesterday, we had 5 all in the room at the same time. So the short of it is that Tiffany has . . .

C-Diff and Colitis (explains the abdomen problem) which is easily treated with antibiotics although it has progressed quite a ways
Perhaps candida in her throat (We have yet to get the final test results, but this is what they are treating)
Toxin release in her hands and feet from probably all the drugs she has been on over the year (this is simply a theory as they don’t know for sure what it is -- it is the same symptoms as reaction to chemotherapy which she hasn’t had last time I checked)
The new one that we were not anticipating is that she has MRSA in her blood. This complicates everything because MRSA likes to go to foreign objects and grow on them and then they go to the heart. She had a TEE (this is where you swallow a camera and they look at the heart from the inside) on Sunday which ruled out MRSA colony on her heart valves. What it does mean though is that her port has to come out which is a big bummer. She will then go through the treatment process over four weeks and then hopefully get another port put back in when her blood is clear of the MRSA. They will remove it Thursday.
Her breathing has become more difficult and her oxygen has had to be increased. They believe this is a result of the stress that her body is under as her lungs “sound” good.

The good news now is that we have a treatment plan and we are currently staying with that plan. Last week it seemed like they were changing directions every day and had a new thought of what the problems may be. One of the blessings in all of this is that we were able to catch the MRSA in the blood early on. This actually can be a very serious problem and she wasn’t even showing signs of it when we came in to the hospital. God is good and is working in ways that we do not know!

Thank you for your continued prayer. If you would like, you can send a note to Tiffany and I know that would be an encouragement to her. Here is how you can specifically pray now.

That the treatment plan would continue to bring healing.
That we can get the MRSA totally out of the blood.
That we would be able to reschedule at UCLA for a reasonable time (looking for the beginning of January)
That we could get out of the hospital before Thanksgiving (possible but probably not likely at this point but God can intervene!)
The Lord is opening some doors of conversations with some of the medical staff -- pray that God would use us in their lives and that they would turn to the Great Healer

Thank you again for your love, support, and prayer.

Trusting in His Grace,
David and Tiffany Brock

Transplant Possibility

2010-11-18T22:25:00.000-07:00

Tiffany is now without a port. Everything went well with taking the port out this afternoon and now Tiffany is having a blood transfusion because her red blood cells were low. We are hoping now for a quiet couple of days with extra sleep. Below is a letter that we sent out to some family and friends a couple weeks ago and that we were going to post earlier before all this excitement. Here it is finally.

Dear Family and Friends

It has now been around six weeks since Tiffany got out of the hospital. It has been so nice to be at home and to be enjoying the new hardwood floors that many gave to and many gave of their time to install. It really has been a blessing while eliminating many of the asthma issues. We serve a great God who continues to supply our needs. Thank you for all of your prayer support these last couple of months.

This last year has been a pretty difficult one for Tiffany with constant infections and not being able to stay off of I.V.'s for much more than a month at a time. This last hospital stay in August and September was a harder one because of the length and because of how low her lung functions reached. While in the hospital we were able to have a number of good conversations with her Dr. and some since with the CF nurse. The Dr. encouraged us to start thinking about a double lung transplant. With the frequency of infection and the duration of healing, we have reached that point. The last six weeks of being home has been a time of much prayer and research as we look at all of the issues with lung transplants.

I know that we have many questions -- some we have found answers to and some we continue to learn about but the following are just some questions and answers that may better help you understand and pray.

How do you know when it is time to look at transplants? Basically when the infections become much more frequent and the duration of recovery continues to increase combined with a decreased lung function to below 50% -- kinda sounds like the last year. When the lungs have a hard time doing their job.

What are the survival rates of transplants -- 80% make it through the first year and 50% are living five years later

Will Tiffany still have CF? Yes, but she will not have lungs with CF so the treatment is much different. She would still have the digestive, sinus, and diabetes issues because CF is genetic and affects more than just the lungs. In fact, we would really have to stay on top of the sinus issues as that can be a source of infection with the new lungs. Because the lungs don't have CF, all the breathing treatments, poundings, and such would no longer be needed -- I essentially lose my excuse to beat my wife. :) The reality is that she is exchanging one set of problems for another because once she has the transplant she will be on medicine that suppresses her immune system to keep her body from rejecting the new lungs.

What is the process of getting a transplant? The first step is our research and making sure this is a direction we want to go. We have done quite a bit of research and spent much time in prayer and believe this the right course of action for Tiffany. Secondly, you have to choose a transplant center. We have decided on UCLA in Southern California to start the process. We have an appointment with them Nov. 15-17 when we will run tests and have many meetings. They give you a LAS (lung allocation score) that determines how high of a priority you are for receiving a transplant. It considers many factors from the tests, to support, to long-term viability and other such issues. The higher the number the greater the likelihood of receiving lungs. After they do all that testing, we will then find out if Tiffany will be accepted into their program and if she will be listed now or need to wait. If listed, you then wait for the phone call, and when they call, you drop everything and go. If she is not accepted into the program at UCLA then we will look at other centers.

What is the recovery time? This is largely dependent on how your body reacts to the new lungs-usually about 3 months that they want you to stay near the transplant center.

What will happen if Tiffany doesn’t get a lung transplant? The reality is that her lungs are getting worse and that the infections are taking more and more out of her. The end result is that she would eventually get an infection that her body cannot fight off. No one can say how long her lungs would last but once your body is weakened it is very easy for it to drop quickly. The Dr. has not given any type of time factor of how long she could live without a transplant as you just don’t know what infections may come. The reason we are looking at transplants though is the reality that that time is approaching. Hard to work through but yet a reality.

So what is the next step? The next step is establishing a relationship with a center and starting the process of evaluation and getting listed. We are wanting to be connected to a center right away. They may say that she is still not ready for a transplant but it is much better to have an existing relationship with a center that is watching her as she could take a down turn any time. We are scheduled to meet with UCLA Nov. 15-17. If she is accepted and listed, then we simply wait for the call.

How long will she be on the waiting list? There is no definitive answer on that. The factors included would be her LAS, blood type, body size comparison, lungs being available, and many other factors. It could happen very quickly or it could take a couple years. We have many questions to ask in this area at the appointment.

I write you all of this so that you can come along side of us and pray. There is still much to learn and we are confident that God is in control. Here are some specific ways to pray.

Pray that God gives us the emotional and spiritual strength to make wise decisions.
God can use this in the lives of others.
Tiffany be accepted into the UCLA transplant program.
The appointment would go well and we would be able to learn more
God would accomplish His will in our lives.
God will be in and through all of the big and little details.
Be able to maintain Tiffany’s health that will allow all of the traveling and the transplant

Thank you for your continued love and support.

Resting in His grace,

David and Tiffany Brock

update: Tiffany was not able to make the UCLA appointment although we are working at rescheduling it.

Tiffany Update

2010-11-18T13:39:00.002-07:00

Ok. So we know it has been a long time since anything has been posted and a lot has happened since Tiffany last posted. This will just be a quick post and then I will come back with some other posts that are actually emails that we have sent to family and friends over the last couple of weeks and that will get everyone caught up on where we are.

As I am writing this, I am sitting in the hospital where Tiffany has been for the last 10 days. We have a PICC nurse here putting in a PICC line as her port is coming out this afternoon. We went in to the hospital last week because of a number of issues but while she was here, MRSA was discovered in her blood so she is currently being treated for that. MRSA loves foreign objects so they are taking her port out as a precaution.

We are not totally sure how long she will be here, but we are hoping to be home for Thanksgiving.

Well, the PICC line is now in -- I will post again later. DH

The Other Side by DH

2010-10-20T22:08:00.000-07:00

Below are some of my notes from when I recently spoke at the CF Family Forum. It was a great day of information and encouraging stories of how people are living with CF. What an honor it was to be asked to speak at it. I didn’t change them much for this post so it may seem a little chaotic. They assigned the following four questions to me. The post is a little long as was my little speech.

Hope and Perspective

1) What do you see as the biggest challenge for a spouse of a CF patient?

--roles and which one I should be doing – what hat to put on

-husband, cheerleader, encourager, accountability, pusher, helper, nurse, respiratory therapist, financial, house keeper, cook

--watching the person you love slowly deteriorate

2) What do you wish you had known from the beginning (or earlier)?

--the progression of CF... to better know what was coming

--how daily life issues affect energy (see spoon theory from earlier post)

--how to be a good advocate for her

--available financial help programs

3) What was the hardest learning curve about the financial stressors and insurance problems?

Insurance

--that it simply takes time

--need for documentation, and how to track everything – developing a system that works for you and that we both can work

--don’t assume dr.s offices and hospitals don’t make mistakes on billing

--be proactive

Financial

--how to adjust living based on whether or not she is bringing in an income due to illness

--hard to budget with an ever changing monthly cost with prescriptions and such

Know which questions to ask!!!!

Be persistent.

4) How do you cope with your feelings and emotions and take care of yourself?

Practical things and Life Perspective

Accept the reality of CF – it is chronic, it is progressive, you can do everything right and she will still get worse

Practical

--support of family and friends – build a support team

--taking quiet time and getting the sleep you need

--transparency with tiffany

Philosophy of life or life perspective

--keeping a forward looking view and not letting CF control your life but realizing it does influence your life

--having the right view of CF – not becoming angry about it – realize that CF makes her who she is

--faith in God and that He is in control

--because she has placed her faith in Christ, the worst that can happen is that she die and go to heaven

My Help

2010-10-18T13:38:00.000-07:00

Lately, I have had much to think through. This Psalm has been a blessing.

My Help Comes From the Lord

121:1 I lift up my eyes to the hills.
From where does my help come?
2 My help comes from the Lord,
who made heaven and earth.

3 He will not let your foot be moved;
he who keeps you will not slumber.
4 Behold, he who keeps Israel
will neither slumber nor sleep.

5 The Lord is your keeper;
the Lord is your shade on your right hand.
6 The sun shall not strike you by day,
nor the moon by night.

7 The Lord will keep you from all evil;
he will keep your life.
8 The Lord will keep
your going out and your coming in
from this time forth and forevermore.

The Other Side by DH

2010-10-12T18:11:00.000-07:00

A Good Day

Have you ever thought about what makes a good day? Last Saturday would have been what most would be considered a good day for me. After finishing some meetings at the college, I was able to go over to Phoenix Children’s Hospital where they were having a family day seminar for CF. I had the honor of being on a panel in the afternoon where we shared our stories and gave insights into living with CF. What a blessing it was to hear from others who were going through many of the same things that Tiffany and I have been going through as we live with CF.

One thing that I noticed about all the CFers that talked -- They are fighters and don’t allow CF to define their life. I had the privilege of talking with a lady and her husband who is about to celebrate her 3rd year with a lung transplant. To listen to her story and talk with her husband about what they went through was an encouragement to me. To be able to talk with families afterward was also exciting as I got to share more of who Tiffany and I are and how we face life with CF. As Tiffany’s previous post points out, life with CF is hard, harder than what people know as I think is true of most chronic diseases.

So that leads me back to my first question--Have you ever thought about what makes a good day? A good day is not defined by my circumstances but is defined by the fact that my God is God and I can trust Him with my all. In that sense, every day is a good day -- but the reality is that some are harder than others.

Progressive

2010-10-11T15:24:00.000-07:00

I don’t know what I was expecting but this was not it. I realize that I do have a progressive disease-that means that I will die from it or complications from it. I think that I expected to just at some point to get sick and not recover from it-to go quickly. However, this is very different. My lungs are slowly dying. The past two days have been very hard. I have been off of IV’s for almost 3 weeks and I am getting sick. Coughing up crud, tired, really struggling.

This is that progressive part. It is almost as if your body is holding you hostage, laughing at you, because there is not anything you can do about it. It is very wearing physically, mentally and emotionally. There has been times this weekend where I have struggled with just quitting-wanting to stop the fight. Now, don’t freak out on me that is not going to happen but it is something that I have thought.

In the quiet hours, after coughing for 1 1/2 hrs and struggling to go back to sleep, when everything aches, when you just want some moments of relief-these are the times when progressive really hits home. I feel guilty for putting my DH, my family, my friends, my coworkers through this. Although I know that many of them have chosen to walk beside me for this journey it doesn’t make it easier. My brother is getting married next summer and I have told DH several times that I HAVE to be at his wedding (of course, the unspoken fear is that I won’t be). Don’t worry Brother....I plan on being there!

"My flesh and my heart may fail,

but God is the strength [rock] of my heart and my portion forever." Psalm 73:26

Friday Fill-in

2010-10-08T13:14:00.000-07:00

*It’s bad when words are mis-spelled in a tv commercial (hmmm)

*cheesy line of the week “If ear wax was made of your voice I would totally never use a q-tip”

*I enjoy that PBS has some really good concerts on it-I just have to find them :-)

Lord, my heart will choose to say, Blessed be your name.

“And he said, “Naked I came from my mother's womb, and naked shall I return.

The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” Job 1:21

"Mom, why does she have that thing on her face?"

2010-10-04T19:40:00.001-07:00

I am attempting to get out of the house more. This means, of course, that the o2 comes with me. This is a very new experience for me. I have always been successful at “hiding” when I am not feeling well. In fact, one of the tough things about CF is that most of the symptoms are internal. CFers often look great on the outside. Thus I had the benefit of often not looking sick.

However, this has changed with the fact that I now wear a nasal cannula for oxygen. Internally, this has been a harder adjustment. Many people in my life have been very gracious and insist that it hasn’t changed anything. It’s hard to explain, but sometimes I feel like I need to over-compensate so that people see past the plastic tubing on my face. I am trying to get rid of that “barrier.” When walking out of a store recently I overheard a daughter ask her mom, “Mom, why does she have that on her face?” Or, at children’s choir rehearsal getting asked “are you okay....what is that on your face?” It is almost easier to get the blunt honesty of children rather than the imagined questions of a look.

This has been a great reminder though that this tubing does not define me. My CF does not define me. My circumstances do not define me. My identity as His child is now firmly in His hands, defined and maintained by Him made possible through His grace.

Back at it...

2010-10-03T22:19:00.001-07:00

It has been a blessing this week to get back to doing several things that I love.

Chandler Children's Choir

Vocal Ease Voice Studio Master Class

Tri-City Baptist Church Worship Service

Fall

2010-09-29T12:00:00.000-07:00

While temperatures here are unseasonably high (still over 100-ugh), I am ready for fall! Recently I read about this pattern for fall paper leaves that I think I am going to have to try.

The pattern for these beautiful leaves can be found here.

Fall Paper Leaves

Another video

2010-09-27T13:39:00.000-07:00

Here is another video. This is from the time I was doing graduate work at Arizona State University. Enjoy!

Performance Excerpt

2010-09-26T14:42:00.000-07:00

This is a video excerpt of the Chandler Children's Choir (this is one of the choirs I collaborate with) and guest soprano, Erin Morley at their Spring Concert in May. Thought you might enjoy.

Excerpts from DH update

2010-09-23T23:40:00.000-07:00

We are now ending our 6th day at home -- and it feels great to be back in our own bed!! Tiffany was able to come home last Friday but we had to re-hook up our internet and with all the commotion of coming home that didn't happen till the end of the weekend -- hence the lateness of this update. Tiffany came home on oxygen and the drug plan explained in the last email. The schedule has been ok except for the long periods of being hooked up to the IV which make for a couple interruptions during the night and not much sleep. It was probably about 11:30 p.m. that the last delivery guy (for oxygen equipment) left our home Friday night and then Saturday was filled with trying to get reacquainted with our home and settling in after having been gone for almost a month. Needless to say there were some items that needed to be thrown out in the fridge. Basically the last week has been filled with drugs, CPT (pounding --or beatings== to break up the mucus), and as much sleep as possible.

Today we had an appointment with the CF clinic to see how she is progressing and it was a good visit. Her PFT numbers were up to around 51% which is a great improvement from her last test in the hospital when it was 39%. Her mom came in to help us last Saturday so it must be her good care that is helping her get better. Because her numbers are doing well and the therapeutic value of the IVs are running out, they are taking her off the IV drug and oral antibiotic over the next couple of days. This makes us a little nervous because that is what has been beating down the bugs, but staying on the drugs is not the best option -- we want them to work in the future. This will allow us to finally be able to sleep through the night so I am looking forward to Friday night's sleep!

Although Tiffany is progressing, we have learned over the last year that her body is much more prone to allowing these infections to take hold in her body so we must be careful. Please be in prayer for us specifically about the many decisions that we will be needing to make over the next couple of months about schedule and treatment plans. We are trusting in our God for His grace and leading! Thank you for all your encouragement and support.

Update 9/21/10

2010-09-21T17:34:00.002-07:00

Sorry for taking so long to write an update. I was able to come home Friday evening. Wohoo! Boy, it is so nice to be home. A month feels like forever-it is amazing how much life happens in a month. It seems like I was just in my own world, in my room-not really tied in to what is happening outside of that room.

I walked into a whole new home. While I was in the hospital a group of family and friends completely replaced the flooring in our home. Where we had carpet through the entire house before, now only two rooms sport carpet. I have beautiful hardwood floors. What a blessing! This is such a labor of love-I don’t feel like “thank you” even begins to scratch the surface. We are hopeful that this will greatly effect and help my lungs. Each piece went down with love and I am so thankful for those that invested in me and my health.

So, back to the health front. I am home and making progress. This process has been much slower than other exacerbations. I am still on IV meds 16 hours a day, oral abx and inhaled abx (abx is short for antibiotics). I am still on oxygen as well, so this is a new frontier for me. We now have cool tubing all throughout the house. :-) I am nervous about going out in public with oxygen-this happens on Wednesday as I have a Dr’s appt.

DH and I were talking about the reality of where I am. With where my pft’s are currently and the current exacerbation I have some room to make up. It has been a tough year-basically, I have been on IV meds 50% of the year. So, it seems that we have some choices ahead of us. Would you join us in praying for His direction in these choices?

Hopeful

2010-09-16T16:51:00.002-07:00

Hopeful...we have heard the word “home” mentioned and if all remains stable over the next 24 hrs it is likely that I will be headed home sometime tomorrow. This is the point where we hope this all happens, but “don’t count our chickens before they hatch.” It is much easier to have low expectations and be excited than have to deal with the emotions of disappointment.

We still have a ways to come and I have my work cut out for me at home the next several weeks. I am still on oxygen, continuing with IV and oral meds as well as cpt to keep things moving. However, all of these things seem much more manageable from the homefront.

Progress is being made

2010-09-14T23:19:00.000-07:00

We are now ending our 23rd day in the hospital, and I think we are nearing the end of our stay. Tiffany's main CF doc was back in this last Monday and today, so now we have a plan for getting her home. At the beginning the goal was that she wouldn't go home until she was off of the oxygen, but that is no longer the determiner of whether she can go home.

We had another PFT (pulmonary function test) on Monday, and she blew a 39% which is 3% higher than last week and 13% higher from when she first came in to the hospital. It was not as high as we would have liked to see (her baseline has been between 55-65%), but it is progress and movement in the right direction. Her breathing has continued to improve and her endurance/strength is getting better and better.

We are shooting for going home the end of this week, so we are making adjustments to the drug plan that will make it easier on us at home. She is also coming to the end of the therapeutic value of a couple of the I.V. drugs so she would need to come off of them anyway. Basically, she is down to one IV drug, an oral antibiotic and going to an inhaled (nebulized) antibiotic. This will make it much easier on us at home with only one IV that currently is four times a day and last for four hours each time. We will see how she does on this plan the next couple of days and if all goes well, then we should be back in our own bed this week.

Our card wall is overflowing, and we are so thankful for all of the support we have received. We often talk about the verse that tells us to "be strong in the grace of Christ Jesus our Lord" and God continues to strengthen us in our insufficiency. Thank you for your continued love, prayer, and support. Below is our latest addition of art to our wall from a good friend’s children -- I especially like the dog, it makes me think of Dutch!

Value of Support

2010-09-10T20:32:00.000-07:00

Well, I just finished up counting all the people on Tiffany’s card wall -- it is over 100 different people that have sent a note of encouragement. What a blessing it is to have so many people praying for us and supporting us through this process of Tiffany’s hospitalization. When I think of the support team that we have, I am simply amazed and thankful. We have heard so many comments on Tiffany’s card wall from health care providers who haven’t seen anything like it and let us know that it is unusual to see. For us, the support that we receive from family and friends is invaluable. Here is a basic description of the support that we have received this go around--

parents who have come for hospital duty

family and friends who installed new flooring in our house to eliminate more carpet

many who have sent cards and emails

friends from church who hauled away the old carpet from our house

excellent medical support from CF center and hospital

college students who we work with have come and visited and sent notes of encouragement

co-workers who are covering for us while we are out

friends who help out with our dog (and even do the dishes when they just stopped by to feed her)

a church family that prays and supports in whatever way they can (like bringing food to people installing floor)

each other -- as we encourage one another to keep a Biblical perspective and keep trusting in a sovereign God

Thank you so much to all of you who have helped support us. It allows us to fight the CF, be encouraged, and keep moving forward despite the difficulties. I would encourage you to lend support to those that you know have a chronic disease or just need encouragement. You probably have no idea what just a simple note will do after spending another day in the hospital! As Tiffany’s husband, I can’t express how much it means to us. Thank you!

Update 9/9/10

2010-09-09T22:18:00.002-07:00

I wish that I had some really awesome news to share today. The past couple of days have been tough. I blew another round of PFT’s on Tuesday-they were around 36% (I was hoping for mid to high 40’s). So progress is slow in coming. It is a real possibility that this will be at least another week or so. Both DH and I have been quiet, just getting our brains around what is happening, exploring possibilities, thinking through everything to be sure we aren’t missing something obvious or not doing something that we should be doing.

My regular CF doc does not return until Monday so we really don’t anticipate any changes until then. At that point, we hope to ask about what they are thinking and what that means for the days and weeks ahead.

I also had some port excitement over the weekend. Sunday we were unable to get any blood return. Stuff was going through just fine but they couldn’t get a drawback. So, Tuesday afternoon was spent down in I.R. (interventional radiology) to confirm that the line was still viable, that there were no clots or problems. There was a fibrous sheath that had grown over the end of the line. They were able to hook me up to a slow 1 hr drip of a med that would clean that out. Took another look after the drip finished and stuff looked good. Big sigh of relief-I was not looking forward to having to replace the port if necessary.

The oxygen component has not really changed. I had tried to push for them to reduce it down to 2 1/2 ltrs. but it resulted in extra stress on my body. Last night was a point of decision for me not fight this-back up to 3 ltrs. and let my body use the energy to fight the bugs rather than fighting to get air.

What fun it was to have some visitors yesterday! Thanks guys for stopping by. I LOVE all the notes of encouragement and goodies. Also added more cards to my card wall. Whohooo-it continues to give opportunities to share about my faith family and those who are so faithfully praying.

Today was a quiet, low key day. The goal was some more sleep. Goal accomplished-several naps later! Got out and about with DH downstairs and a game of nerf ball catch in the room all made for a just right Thursday.

Overwhelmed

2010-09-07T23:27:00.002-07:00

Do you ever have days where you are overwhelmed? Where you reach the end of your rope and feel like saying “no more-I can’t deal with this”? For me, the past couple of days have been at this spot. There were several events that just tipped the balance-not one of them was that huge but connected all together they made for something that just was too much.

Update 9/4/2010

2010-09-04T22:05:00.000-07:00

Headed in the right direction. The past two days we have seen a little progress which is a blessing. Thursday and Friday they made some drastic changes on the medication front and it seems to be just what was needed.

I am still on the three IV antibiotics but the frequency and duration of those have been modified. The Primaxin they are running very slowly over a period of 4 hours every 6 hours. The thought behind running this so slow is that it gives a constant level that works against the bugs, rather than a quick peak and then decreasing over a period of time. The Tobramycin is the same; a dose every 12 hours. The Vancomycin they have doubled-so I get a dose over a period of 2 hours every 6 hours. It seems as if this change has thrown those bugs for a loop and are beginning to kick them! :-)

Thanks to those who have dropped by or sent cards. It is so fun to continue to share your love for me with those that care for me here-it has been a true testimony.

The Wall

2010-09-02T11:09:00.000-07:00

Thanks so much for your additions to my wall! It is so fun to hear the exclamations as people come in and see all that is on the wall. I especially love all the artwork....such great creations-thank you so much.

Update 9/1/2010

2010-09-01T20:55:00.000-07:00

Whew! It’s only 11 am and it has been a full morning already. The morning started with blood work at 4, then a change out of IV meds. Then at 5 I was greeted with vitals....moving on to 7 I decided "why wait to get the morning going" so we got up and moving. Several student nurses in, the nursing assistant, breakfast, the doc coming in, x-ray done, breathing treatments and cpt, then more nurses-oral meds and changing out IV med, then RT coming to do blood gas lab work....all before 11! Time to take a nap-maybe this means a quiet afternoon!

Well, ended up being kind of a crazy day. My white blood cell count is up slightly so they are working at eliminating any other possibilities-taking a look at labs, checking to be sure there are no other infections going on that we may be missing. Also taking a look at if there is a different drug family that would be more effective against the PA.

My dad has been on hospital duty this week. Thanks Dad! I think he is getting an education and a half. From what blood gases are to giving benadryl before my vanco dose...He has really been a trooper and I am so thankful that my family and friends are such a crucial part of my support team. Thanks guys!

One Week Update

2010-08-30T22:29:00.000-07:00

Well here we are at the one week mark. Today has been a good day but with some tough reality checks. Last week I came in through the ER due to shortness of breath. My oxygen saturation was at 80 and no energy. Today I am on 4 liters of oxygen and my ox. sat. is around 93/94. I am on three antibiotics; Vancomycin, Tobramycin, and Primaxin. I have four sessions of nebulizer treatments (anywhere from 1-4 meds each session) and CPT (aka pounding) each of those four times which constitutes about 2 + hrs of CPT a day. Mix that in with vitals at the most inconvenient times, blood draws, and doctor visits...occasionally some shut eye and a few moments of alone time with my hubby. (oh and I can’t forget all the pills that I have to swallow :-) That pretty much sums up what I have been doing this week.

I am fighting two bugs in particular, MRSA (a type of staph) and PA (a type of pseudomonas). These are not new bugs to me-I have grown and treated these pretty regularly. The oxygen is a new twist. This is the most I have ever been on oxygen, so that has been a little disconcerting. Was able to ask some questions of the docs today and get some real insight. It looks like I am in here for a long haul. To be honest that is a tough reality for me to swallow. The doc today encouraged me to make the most of this stay and plan at least 3 wks. Argh! I am chomping at the bit already.

It has been hard not to dwell on that this evening. Several times the phrase “the spirit is willing but the flesh is weak” has come to mind. The other worry that keeps trying to creep in is the reality of a “new” reality. As I shared with my hubby, it’s tough because I know that this is just the start of more/longer circumstances like this. Praise the Lord that through Him we can keep every thought in captivity. He knows, He is at the beginning, middle, and end of all of this. I don’t have to fear because He is right here with me. Now for the practical application of choosing to rest in His working (even if it really isn’t what I would have chosen).

Thanks so much for your faithful prayers. What a blessing to know of many who are upholding me and DH in prayer. Your notes and emails are a real encouragement as well and often bring a smile. Thank You

The Latest 8-28

2010-08-28T22:45:00.000-07:00

Tiffany is headed in the right direction with some progress on her breathing. She is still on oxygen and we are going to see if we can start reducing the amount slowly. We have reduced it slightly from when she first came in and her oxygen levels have been maintaining around 93%. Basically now it is the process of just being patient with allowing the drugs to work their magic (of course we understand that they will work their magic according to the will of God ). The dr.s have not even mentioned a time frame of how long she will be in here which means it will most likely be no sooner than the end of the week. This is that part of patience! There are a lot of CFers in the hospital right now so we have seen the CF docs every day which is a blessing. They have not found any new items to address so we are still just primarily dealing with MRSA in the lungs. -- David (DH)

Tiffany's Card Wall -- Feel free to add to it!

In the "slammer"

2010-08-26T13:02:00.000-07:00

In the CF world that is the slang for hospital. Yes, unfortunately my lungs took a nose dive over the weekend and my hubby graciously took me to the ER on Monday. So it looks like I may be in here for a while. I hope to keep up on the updates, but for now I covet your prayer.

Friday Fill-in

2010-08-20T08:54:00.000-07:00

My brother and his girlfriend got engaged. Congrats you guys!!!!

You know it’s hot when you turn on the cold water and all that comes out is lukewarm water.

When recording (a rehearsal CD) it is always nice when all of the technology works.

Back to school madness is in full swing.

Happy Weekend

pics from San Diego

2010-08-18T12:10:00.000-07:00

a pier
we enjoyed many walks on the beach

Balboa Park
we visited a Japanese Garden
and heard a concert at the Organ Pavilon

the view from our room

a lot going on...

2010-08-17T19:17:00.000-07:00

This past week and a half has been tough and good all in one. From two road trips to getting off prednisone to spending a day recording rehearsal tracks...it has made for some crazy, busy days.

Unfortunately things started in a way I would not have chosen. I had a dear aunt that went home to be with the Lord. She was 55 and had been battling MS for many years. I was sharing with someone recently that there is no way that I could wish her back here....although we miss her a lot, she has a new, pain-free life. My hubby and I jumped in the car and made the 13 hr trip to CO. The funeral went very well. Many attended and it was a sweet time.

My mom, hubby and I left that afternoon to return home. We spent some hours at home and then mom and I left for our previously planned road trip to San Diego. We enjoyed several days on the beach of Pacific Beach. The cooler temps and the relaxing atmosphere of the ocean was just what we needed. What a blast!

Among all of these happenings I am still tapering off the Prednisone. I am currently at 5 mg every other day. Honestly, it has been rough. My mood has been up and down. My DH shared with me “I am just trying to be sensitive. I don’t know what is really an issue and what is Prednisone!” I feel the same way. My body is not excited about me taking away the Prednisone and it seems to be throwing a tantrum. I continue to remind myself that this is the best choice and allows for more flexibility in the future (as far as using Prednisone to treat future asthma flare ups), but somehow my body, lungs, emotions aren’t buying what I am selling. :-)

In all, the Lord is so faithful and truly gives grace to deal with the curves that come each day.

An "aha" moment

2010-08-03T20:10:00.000-07:00

I was talking with a young lady Friday evening. She has just graduated with her music degree and was picking my brain about my job and what I did here in the valley as a pianist. We had a very profitable conversation.

As I was sharing with her my teaching load she proceeded to ask if I taught privately as well. I went on to talk a little more about really having to be careful how busy I got due to health concerns. It was in this moment that internally I thought “I really can’t do any more.” Now that may not sound so earth shattering....but, it really was the first time that I had thought “I can’t” instead of “well, if I get a little healthier”.... I think that this is an important moment.

It is bittersweet (although healthy) to come to terms with my limitations. I am not sure how I feel about all of it...that is something I am still wading through.

The Other Side by DH (organization-part 4)

2010-08-02T20:47:00.002-07:00

Here are a couple points for making life on IVs easier.

Become as independent as you can from the home health care company. I learned to access and de-access Tiffany’s port early on. In fact Tiffany de-access’ her port by herself often and has even accessed it by herself once -- she is pretty brave! This allows you to be on your own schedule and not theirs and also keeps bugs from other people away from your port.
Organize your supplies -- see previous post -- trust me this really does help in making life easier but it also gets it out of your living space so your house doesn’t look like a hospital.
Get a basket that fits on the base of your pump pole wheels. I stock this from my organized supply and since we put it on the base of the pole, it is always there with whatever is needed. I usually have to stock it every other day for some things and only once a week for others. See the picture below. A longer, skinnier basket works well that sits right on top of the wheels of the pole base. In the basket we place the heprin, saline, tube caps, alcohol wipes, hand sanitizer. the caps, wipes, and sanitizer we put in a little box on one end and then the syringes we put in going different directions to make it easy to keep them separate. You will always go through more saline then heprin.
Get a good pump and learn how to use it without help. We do every medication through the pump even when it is not required. This is especially important to us when Tiffany is doing them alone. It gives you much more control especially if you have reactions to the drugs. For example, Vanco is not a very nice drug and Tiffany cannot run it at the speed for which it is prescribed. We have to slow it way down in order for her not to get Redman’s. No matter how many times we do IVs we have to expressly ask the home health to send the pump and to fill the meds to be used with a pump.
Remember that your body needs time to recover so schedule your drugs with sleep in mind.
Become friends with your nurse -- she can save you a load of trouble and help you out of a tight pinch.
It is ok to let your friends and family help. If they ask if they can help, see if they can bring over a dinner for you. We have found that we only want about 3 dinners a week from others because of all of the left overs. Maybe they can come over and help clean your house or apartment. Once when Tiffany was in the hospital, we had a group of friends come over and clean the entire house and sanitize everything -- they probably worked for four hours and there were around five of them. It was great to bring Tiffany home to a clean and sterile environment. (thanks guys)
Soft blankets are wonderful -- our best are homemade fleece blankets -- you can email Tiffany for instructions on how to make them.
Put a towel below the IV pole and on the arm of the recliner (or whatever comfortable chair you sit in) to protect them from drips and such. Some of the drugs do stain carpet.
One I haven’t done yet but plan to do next time, with a small wire or ribbon, tie your little basket to the pole. Inevitably either my dog or my foot will knock the basket over a couple times in a week.
Combine other treatments with IVs such as do your breathings and CPT while you are hooked up.
Showers with picc lines and ports are interesting. For picc lines -- cut both ends of a ziplock back off so as to make a sleeve of the plastic that can go over your arm where most piccs are inserted. Cover the the bandaging with a washcloth with the bag on top and then tape off both ends. Unfortunately, we have not found a tape that works good every time and we have tried them all from waterproof to basic tape. We now just use the one inch wide tape that comes from home-health. For a port, use the heavy plastic bags that your supplies are delivered in or a zip lock bag and cut it just a little bit larger than the bandage over your port and needle. Cut a wash cloth to the size of your bandage and place it on the bandage and then the plastic can be taped on. Do the top first and then the bottom and then the sides. For some reason, the tape seems to stick better if you stretch it tight as you put it on. When you get out of the shower have a paper towel ready as water will always get through the tape but hopefully the washcloth will soak most of it up. Tear off the tape (every way we found still hurts) and then dry off the dressing with the paper towel.
We normally have one of those big shower heads that feels like you are standing under a waterfall but we change out the shower head while Tiffany is on IVs for one those shower heads that is on a hose. We then place it lower for Tiffany so that the water does hit her head but below the port and then she can wash her hair with the shower head because of the extended hose. The five minutes to change out the shower head is worth it!
Keep a trash can handy with good plastic bags. You will have lots of trash and plenty of liquids from tubing and left over drugs in bags. You don’t want that leaking out all over. We used to use grocery bags but too many of them had holes and we would get stuff all over.

Music Camp Musings

2010-07-31T20:14:00.000-07:00

Last week I stayed busy heading up the piano track of IBC’s Music Camp. What fun! I was spent several hours each day working with 7 young people who are all passionate about playing the piano. From one on one lessons to ensemble rehearsal, we were able to learn from and challenge each other. The week closed out with several concerts and they all did a great job.

Here are some pictures from the week.

Music Camp

Now the goal is to let down; enough to get healthy for the fall semester but not crash and burn, ending up on iv’s. So, the plan is to rest, stay on top of my routine and let God take care of the outcome!

Friday Fill-in

2010-07-30T12:12:00.000-07:00

-passed the 1000 mark this week....thanks so much for visiting my blog

-I wish it would rain already (ok it rained some Thursday night...stuff cooled down a little)

-God’s creation is awesome...just check out these pictures Sea Slugs

Explaining a Chronic Disease-The Spoon Theory

2010-07-29T07:45:00.000-07:00

One of the difficulties that living with a chronic disease presents is that of trying to explain what life is really like. For those that I interact with on a daily basis, for that matter, even my husband who has lived with me for 13+ plus years (whoohooo-love you sweetheart) it is hard to effectively communicate the reality of what I face on a moment by moment basis.

There are things that they can grasp factually; for instance, that I have to spend hours doing maintenance treatments, I need to have someone or something “pound” on my lungs to shake the thick, sticky mucus loose (sorry if tmi), I am really susceptible to bugs and colds, I cough all the time, etc. However, it is hard to explain how CF affects how I make choices, how I schedule my day, etc.

The following is an article written by a woman who is fighting lupus. She has found an effective way of communicating the impact of a chronic disease. I would strongly encourage you to read through this. I believe that it will help give a glimpse into the life of those fighting for each and every day.

The Spoon Theory

Becoming by Beholding

2010-07-28T13:07:00.000-07:00

I have been challenged lately in my walk with the Lord as I seek to become. A thought that has stuck in my mind is that one of the ways I can become is by beholding Him. Knowing the truth of my God is what changes me!

A song that I recently played reflects this...

Moment by moment I’m kept in His love;
Moment by moment I’ve life from above;
Looking to Jesus till glory doth shine;
Moment by moment, O Lord, I am Thine.

The Other Side by DH (part 3 of organization)

2010-07-26T13:06:00.000-07:00

When we first started doing IVs at home we would have bags all over the living room with tubing, drugs, needles and other paraphernalia left in the paper bags that they were delivered with everything all mixed together. Our refrigerator became filled with differing drugs added onto the other maintenance drugs such as TOBI and Pulmozyme that already took up the bottom portion of our fridge. As time went we then got a two drawer clear storage bin that you can see in the left part of the picture below. We stuffed everything in it that we could organizing everything in the plastic bags that the supplies were delivered in. This was a step in the right direction as we separated everything out and put everything that was the same in the same bag from multiple deliveries and multiple times on IVs. Finally we got even more organized to a system that I would suggest to anyone who will regularly be on IVs such as a CFer whose disease is progressing and needs to be on IVs 1-4 times a year in order to fight down the infections.

In the picture below you see a 10 drawer organizer that is on wheels. This holds all of our IV supplies besides the heprin and saline syringes (which we left in the 2 drawer organizer because of all of the space). We bought the 10 drawer organizer at Sam’s club and it is the perfect size. Not too big that it takes up a lot of space but big enough to put all of the extra supplies in that we have collected over time. It is always good to keep your old stuff (please do throw away anything that has expired -- better safe than sorry) because the home health agencies do not always deliver the right amount of something and it is a bummer to run out of something and realize it at 10 p.m. when it is impossible to get something delivered for your dose that night. We also keep our extra stuff on hand because you never know what is going to go wrong with health insurance especially right now with all that is happening in our country. Already in AZ we are starting to see the rationing of major health services like transplants being eliminated from state run programs. In light of these types of issues we try to keep a healthy stash on hand but not so much that it takes over or that we have out of date medical supplies. It is hard to throw that stuff away, but it is not worth endangering Tiffany’s health because something does not work properly because of its age.

Anyway, we labeled each drawer with what is in it and now it is very easy to put our supplies away and to find what is needed. Whether it is to flush a port or draw blood, I now no longer have to go through bags trying to find the right supplies but have it at my fingertips in just seconds which saves time and frustration. I then leave this supply organizer in the back of our closet out of the way and where it is not in the middle of our everyday life. From this I then supply our IV basket which I will show you in the next post. This last step of getting an organizer with small compartments that holds everything in different drawers has made it so much easier to stay on top of what we have and what we need. When I get new supplies I put them in the back of the drawer and bring forward the older supplies. i.e. the tubing that start using at the beginning of an IV treatment is usually from the last time that we did IVs so that what we keep is from the current run of IVs. That allows us to usually use up anything before it expires depending on how often Tiffany goes on IVs. Taking time to organize it all with each delivery saves so much time and frustration. Take the time to do it -- it is worth it!

Faithful to His Promises

2010-07-25T16:30:00.002-07:00

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord. With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

John 6:27

“All that the Father gives me will come to me,

and whoever comes to me I will never cast out.”

Music Camp

2010-07-22T08:12:00.000-07:00

This week I get to pass along my passion for music with pianists at IBC's music camp.

http://www.ibconline.edu/ibc/events/camps/music.jsp

If you are in town, we would love to see you at the Friday evening concert.

Friday Fill-in

2010-07-16T07:15:00.000-07:00

-a golf tournament sponsored by John Deere-somehow this sounds like an oxymoron

-the crickets and cicada’s were singing away this week (it brought a smile as I thought that they were taking the opportunity to praise the Lord)

-music camp next week

-it has been hot this week-so thankful for a/c (116 yesterday and no, right now it it not a “dry” heat)

-I discovered online bubble wrap-so fun to pop :-)

-just saw a green parakeet in our front entry area (hmmm that seems unusual for AZ)

Have a great weekend!

Faithful to His Promises

2010-07-14T21:46:00.000-07:00

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord. With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

Psalm 145:13b

"The Lord is faithful in all his words

and kind in all his works."

The Other Side by DH (part 2 of organization)

2010-07-13T18:30:00.000-07:00

The second area of organization is managing your health care providers. One thing we learned a long time ago is that medical personnel do not always communicate well. In fact, usually they don’t communicate well. Although this is frustrating and you would expect them to, we have found that it is best to expect them not to and to over-communicate with the different providers. Some of them are great like our CF nurses -- they respond to phone calls and emails quickly and do what they say they will do and find information quickly. This is not the norm.

Even though the CF clinic submits orders to home health, we always call home health to verify they have everything we need and go over the orders as they were told us in the dr.’s office. We also call them right away so that they start acting on it and that we can start the IVs right away. It is ok for you to questions your care -- in fact, I would say it is your responsibility to question your care. Don’t do things that you don’t understand or when some nurse or dr. who doesn’t know you tries to start making decisions that don’t line up with the CF doc feel free to question them. We have actually refused service in a hospital while Tiff was on IVs until they contacted Tiffany’s CF doc. Once we had nine docs in one day and they all have the answer especially if they are doing their residency . We get really nervous when some psychiatrist is trying to put in orders on Tiffany’s treatment. Few dr.’s today have a broad knowledge of medicine -- they are specialists and know their field but beyond that they can get you in trouble.

If you are using home health, know who you can talk with in the office that will get action. The reality is just like at your workplace, some people get things done and some people are just there. It is ok to ask for a specific person when you need something. We now have a couple people with our home health company that we won’t talk with because things fail to happen when we talk with them. We have found that sometimes we even need to communicate with the home health office and with the home health nurse to make sure things get done in a timely manner. As in most places, getting to know your nurse and being on their good side is vital to any successful treatment whether it is through home health or the hospital.

We ask the home health pharmacy to call us each time before they fill a supply order -- we know what we have and need - they don’t. They are just following what is on the computer but they don’t see the extra piles of supplies in your living room. I think CFers are a bit of pack rats when it comes to supplies because we never know what will happen or if we will lose our coverage for some unknown reason. Please remember, there is a point when you have plenty of needles for your port and plenty of tubing for the pump. That leads to my next post -- organizing your drugs and supplies while on IVs.

Clinic Visit

2010-07-11T20:05:00.002-07:00

I was able to get in and see Dr. Gong on Wednesday. This is right at the two week mark of being off of IV’s. It was good and not what I would have liked all at the same time. My pft’s were down in the mid-50’s. This has been an ongoing cycle this year. I can get them up into the mid-60’s but over a period of 6-7 weeks we are back down in the 30’s. So, we talked about how we can try to avoid this cycle.

The main focus of the next couple of weeks is going to get off of Prednisone. That is priority one. I have started a new antibiotic, Cayston, which was just FDA approved in March. It is specifically formulated to target the PA (pseudomonas). We are hoping that this med will help maintain some of my lung function.

So, not a bad appt. Once again it seems as if we are in a “wait and see” period. My personal goal is to work at not being on iv’s in 6 weeks. Some of that is in my control and some of it is not. I’m thankful I know the One who is in control.

Project-organizing my cards

2010-07-10T19:43:00.000-07:00

I am a self declared hoarder. I love to hang on to cards that are meaningful to me (from birthdays, thank you cards, special occasions, etc.). Thus, I have random piles of cards stashed here and there. I would like to get these in one place and be able to enjoy them more than when I am moving the stack. :-)

Inspiration hit in the form of this:

http://shop.hobbylobby.com/products/handmade-watercolor-journal-315390/

It is a handmade watercolor book. The paper is archival quality and it has 96 pages. I am going to attempt to put the cards in w/ double sided tape so that I can flip through the pages and enjoy my special “book.” I will keep you posted on how it goes.

Friday Fill-in

2010-07-09T11:51:00.000-07:00

I am thankful for not so normal friends :-)
how our God supplies makes me smile-He is so good and He definitely does it in His way
boy, we sure enjoyed our vacation (pics to come)
it is so neat to see the sweet fellowship that you can have w/ friends who have been away-they come back and you just pick up where things left off
it made me smile to say goodbye to the i.v. pole and pump today (in voice from Toy Story “bye bye now”)
I am excited about the “cysters” on America’s Got Talent and the national attention they have brought to Cystic Fibrosis (haven’t seen them, go here http://www.youtube.com/watch?v=2W5Q3Yal3yQ)
God’s creation is so amazing and diverse

Faithful to His Promises

2010-07-07T22:09:00.003-07:00

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord. With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

Isaiah 40:8

“ The grass withers, the flower fades,
but the word of our God will stand forever.”

The Other Side by DH

2010-07-06T17:45:00.000-07:00

One of the things that Tiffany and I have worked hard at with CF is to be as independent as possible so that we can lead a life that is not constantly interrupted by health care personnel. That gives us more control over our everyday life and schedule and also protects Tiffany from being exposed to the many bugs that health care providers carry around from other patients that they see. Therefore we almost always do I.V.s at home and not in the hospital. Over the years we have learned a couple things about I.V.s -- in this post I want to share how we organize our I.V. life.

Remember that it is your life and your schedule - take the time to figure out a schedule that will be convenient for you to get healthy the quickest. The biggest consideration of this is what time will you do your I.V.s. Depending on what cocktail of drugs you are on you usually are either doing drugs every 8 or every 12 hours. Every 12 hours is much more preferable as it gives you more sleep time, but sometimes you need the every 8 because of the type of drug or because the dr. wants to do more of a specific drug. We have found with Vanco that smaller doses more often get good results. If we are doing every 12 we will usually do it on 9 a.m. and 9 p.m. which allows you to sleep in a little and allows you get your evening duties in such as dinner before you start at night. The other consideration is that it gives a good morning time for nurses to come by if you have to do blood draws. It is no fun to have visitors in your home too early in the morning or too late at night. If we are doing every 8 hours then we usually go with a 6 a.m., 2p.m., 10 p.m. The afternoon time is good for any medical visitors and then the early morning start allows Tiffany to sleep through the meds and I change everything out for her. It also gives us the option of doing the evening dose (or part of it) in bed.
The other thing to remember in your schedule is what we like to call hospital time. The basic rule that I understand the medical profession to follow is that doses must be given within 1 hour of the specified time. So what we do many times is that we will move that morning does back an hour so that Tiffany gets an extra hour of sleep (or that I get an extra hour of sleep).
Schedule in all of your other meds as well that you are doing orally. Some have to be done with meals others may be affected by your IV drugs. For example, Tiffany takes Bio K which is a probiotic to get the good bacteria back in her -- one serving is almost like eating a thousand yogurts. Anyway, she normally drinks this right before bed but when when she is on I.V.s we don’t do it then because doing it during the IV or right after the IV basically kills all the little bacteria immediately which makes it of no effect. So Tiffany takes it at a different time when it will have a greater chance to be effective.
Schedule eating time and exercise -- this is the one we don’t do very well on, but it is also very important. When you are at the hospital they just brink you the food and you eat without thinking about it. At home, you have to take the time to make your meal and eat. If you don’t do it in a schedule, you will find yourself skipping meals and not getting the nutrition that is needed on a regular basis. Exercise is the same way -- if it isn’t planned it won’t get done, and many times doesn’t get done when it is planned.
Schedule breathings and poundings. It is best to schedule these while she is doing the IV. it will help you take advantage of the time better because of how much time the IVs do take. We attempt to do the CPT (pounding) at the end of her IV doses.
Once you have your schedule, write it out. We don’t always do this but when we do it is very helpful for me because I have a tendency to forget some of the things that should be done, and when someone is on IVs they usually aren’t feeling very well and don’t remember everything either. I don’t know what my excuse is for not remembering.

OK - this post is much longer than I anticipated and I am not even close to being done. We will have to split up the organization according to different categories so we can get it all here. So I guess this part one of I.V. organization -- make a schedule and good luck at keeping it!

Goodbye Conner

2010-07-05T16:19:00.000-07:00

You may remember a post several weeks ago in which I shared a very transparent blog posting from Sarah, a mom of a 7 yr CFer, who was dealing with the decline of her son’s health. It is with a heavy heart that I share of his home going, almost a week ago. Here are her words as she shares the very special time that God gave them in his last hours.

http://notsobrightandshiny.blogspot.com/2010/06/24-hours.html

Get Activated on Activase

2010-06-30T13:54:00.001-07:00

Doesn’t that sound like a really cool infomercial? Problems with keeping yourself active? Get activated on Activase! Only 3 easy payments of 37.99, that’s ONLY 3 payments of under 40.00.

I had the distinct opportunity to try out this amazing product. As the home health nurse put it “it’s like a roto-rooter for your port!” Well how can you miss with that? The bright side....I’m done with iv’s for now (insert a happy dance here). So, we decided to take the opportunity while the port was still accessed to try and see if we could get it working again. The doc was also concerned about a possible blood clot so this should dissolve anything like that. Stay tuned to hear the results of getting activated on Activase. :-)

(p.s. it worked! we left it in overnite and we able to get a blood return the next morning. whohoooo!)

Hi, my name is Tiffany and I need medication!

2010-06-24T23:22:00.000-07:00

As an adult living with Cystic Fibrosis one of the realities is that there is no cure. So, we are actively trying to manage symptoms. As a result, I am on quite a bit of maintenance medication. Let me clearly say that I am thankful for the science, research, and development that goes into medications. Without them, I would not be able to have the quality of life that I enjoy.

(I don’t want to post this without the following disclaimer: Always consult your medical specialist or CF Doc when determining which course of cystic fibrosis treatment is best for you or your loved ones.)

Inhalers

Alvesco

Foradil

Nebulized Meds

Xopenex

Ipatropium

Hyper-Sal

Pulmicort

Pulmozyme

Colistin

(adding Cayston as soon as done w/ this round of IV’s)

Oral Meds

Creon 24

Singular

Ramipril

Prilosec

Prednisone (as needed)

Itraconazole (antifungal-hopefully only on this a couple of months)

Bactrim (as needed)

Cipro (as needed)

Diabetes Meds

Humalog

Sinus Meds

Saline wash

Gentamycin wash

Nasonex

IV Meds (as needed)

Cipro

Merrem

Imipenem

Tobramycin

Zyvox

Vanco

Vitamins

Calcium

SourceCF

NAC

(Once again, the disclaimer: Always consult your medical specialist or CF Doc when determining which course of cystic fibrosis treatment is best for you or your loved ones. )

Interesting Thought

2010-06-22T23:03:00.000-07:00

Yesterday morning I was struck with an interesting perspective. I had mentioned earlier that Piper (a fellow CFer) had recently undergone a double lung transplant. She is doing well and Lord-willing will be out of the hospital by the end of the week.

The thought that struck me was this; it would be cool to have a major, major surgery (such as a lung transplant) and wake up from that feeling better than going in. As I read about Piper’s experiences and being at 96% ox sat, enjoying 100% room air (no O2 needed), and not growing anything in her lungs....wow!

(ok, a total shift in topic here, but isn’t that how the Holy Spirit does His work in us-when He pinpoints an area that needs changing and provides the means to change we then experience His transforming grace)

Ah...the joys of a port

2010-06-21T15:48:00.000-07:00

Due to the reality that I am on IV’s several months out of each year, I had a central line put in. This is commonly referred to as a port. For the most part, ports are pretty low-key. It makes treating an exacerbation easier, quicker, and often provides for more medication options. However, there are some complications that can arise. Yes, that’s right-complications.

When the port is accessed one of the ways to confirm that it is still working properly is to get a blood return out of the line. This shows that everything is open and ready to go. Well, the past couple of days I have been unable to get a blood return. This could mean several things.

*a muscle is kinking the line (which I have had issues with in the past)

*it has shifted positions

*there is a clot in the line and when you try to pull back the suction causes the line to enclose around the clot

*there is some fibrous growth over the end that inhibits the blood from coming back through

There are a variety of approaches to this. There is a med that you can flush the line with to clean it out-gets rid of the clot and/or fibrous stuff. Sometimes they will try to get a picture of the line-through ultrasound or a contrast dye MRI to look for any clots that could be serious (DVT or deep vein thrombosis). Actually replacing the line.

After re-accessing the port again this afternoon, we still were not able to get a blood return. The home healthcare nurse is confident that the line is still viable. It flushes fine and you can hear it going through the line. My doc feels that the problem is positional, so as of now, we are going to continue IV meds with an eye out for the following (which indicate a more serious issue)...

*drastic swelling on the side of the port

*very tender/pain near the line

*warm to touch

*redness

So, now to go get hooked up.

Friday Fill-in

2010-06-18T22:19:00.001-07:00

1. this made me laugh this week (Barbie at 50)

2. whoohoo for garage door openers

3. getting into a fresh coconut is interesting-not sure if it’s worth the work :-D

4. Piper, a fellow CFer, got a new pair of lungs this week....have you considered

being an organ donor (Donate Life)

Faithful to His Promises

2010-06-17T19:54:00.002-07:00

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord. With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

Psalm 145:13b

“The Lord is faithful in all his words
and kind in all his works.”

Friday Fill-in

2010-06-12T00:18:00.000-07:00

I just want to say a huge congrats to my dad and mom-they are celebrating their 38th....how awesome is that!
My dog standing in front of our fan with her fur waving in the wind makes me smile
Boy, I sure enjoy reading and I think DH is sure thankful for a library card and free e-books :-)
I have been reminded anew at how amazing is His grace
I love music

Clinic Visit

2010-06-10T20:40:00.000-07:00

Early, early, early (ok 8:30 :-) this morning I had another clinic visit to see if we are headed in the right direction with current treatment. Whohoo, my PFT’s were up! I think all of us sighed in relief. It seems as if things are headed in the right direction. So, at least a couple more weeks of meds and then the goal of trying to keep my numbers up.

We are also doing a lot w/ diet in order to get on top of the fungal infection. [funny note; in the Doc’s notes from last visit it has that I have a “pasta” fungal infection....hmmm, resist the urge for jokes and smart comments ;-)] Ok, back to diet. In the past I have had great success w/ what many would refer to as a candida elimination diet-basically, no sugar, no caffeine, tons of fresh fruits, veggies, grains, etc. I keep reminding myself that it is worth the focus and work in order to help my body get on top of this. Plus, I believe that it is a good example of stewardship.

Thanks to those who have been praying-you can see how the Lord is answering specifically. We will keep on keeping on.

Practically Relevant

2010-06-09T23:09:00.000-07:00

DH and I watched a movie last nite that reminded me about the importance of being involved in clinical trials. The movie was about a dad who was determined to do all he could for his children who suffered from an incurable genetic disease.

As CFers we have an unique opportunity, responsibility, privilege to affect the future of fellow CFers. Your participation in clinical trials/studies directly influences new treatments and therapies that can improve the quality and length of life for other CFers.

Take advantage of this opportunity to change someone’s life. For more information, please go here http://www.cff.org:80/research/ClinicalResearch/.

Faithful to His Promises

2010-06-08T15:02:00.002-07:00

One of the habits I am actively seeking to incorporate is focusing on the truth of my Lord. With that in mind, I have collected verses that reflect His promises and meditate on one each week.

Here is the verse for this week.

Ps 36:5

“Your steadfast love, O Lord, extends to the heavens, your

faithfulness to the clouds.”

The other side by DH (Dear Hubby)

2010-06-07T12:15:00.000-07:00

Last week Tiffany and I were talking about CF and all of the people involved in the facilitating and supporting the treatment process. We were joking around about how much her CF adds to the support of the economy. Below is a list of the people I could think of that have jobs because of Tiffany’s CF -- maybe you can add a couple I haven’t. Just think, without CFers the economy would be hurting more than it is today -- I am glad that we could help someone out with job security! Here is our list (names are protected for privacy issues):

CF Center

Dr. G. -- CF primary care doctor who oversees all of the CF care.

Nurse P. -- adult CF nurse (the person who gets it all done)

Nurse B. -- peds CF nurse who is the back-up when Nurse P. is not available

Respiratory Therapist C. -- runs PFTs (Pulmonary Function Test) that help determine lung function

Respiratory Therapist R. -- tag teams with RT C.

Nurse Aides -- two different nurse aids who check Tiffany in and get all the basic numbers and ask all the annoying questions.

Receptionist of Pulmonary Department -- tell us to go back and get all our insurance info, scheduling

People in Billing

Social Worker J-- she helps us with basic info and helps most folks with basic info on social programs

Nutritionist B. -- she helps oversee the nutrition side of CF (many people don’t realize that most CFers have a hard time maintaining good weight because their body does not produce enough enzymes -- this is actually one of the main areas that is treated in CF)

Other Dr.s and providers

Dr. Mu. -- ENT doc who oversees sinus treatments and performs surgeries

Dr. Mu. nurse, assistants, and billing -- helpful team to Dr. Mu.

Dr. Ma. -- Endocrinologists that oversees diabetes treatment

Dr. Ma. nurse, assistants, and billing -- helpful team to Dr. Ma.

diabetes trainer -- did initial training on pump and available for questions

Ping salesperson -- sold us on the Ping pump

Insulin Pump supplier -- customer service people and order fillers

Johnson and Johnson developers -- they are putting a lot of money toward diabetes treatment (can’t wait till the closed loop system comes out that tests, reads, and administers insulin)

Drug Assistance folks -- these people help you with medicine assistance in either getting discounts, copay help, or free medication (I think we have 3 different programs helping us)

Hospital

Admitting personnel -- admit you and go over billing and insurance

transporters -- anytime you need to go anywhere they are there (and usually late -- we get forgotten once for 45 minutes in a hall way of the operating wing)

Dr.s and more Dr.s -- We had nine visits in one day last hospital visit, attending dr., infection dr., CF docs, psychologists (it is always interesting to watch them -- they don’t know what to do with people like us), etc. . .

Nurses -- usually two a day (ours are pretty good usually on the floor and pod that they put all the CF patients)

Pharmacists

Respiratory Therapists - usually see one four times a day -- they do all the breathing treatments and CPT (something??? pulmonary therapy -- they pound on you or use a machine that vibrates that breaks up the mucus in the lungs)

Home Health Care

P. the pharmacist assistant

Multiple delivery people

D. the pharmacist

L. the billing person

Nurse D. -- oversees Tiffany’s care when at home

Nurse C., M., and C., -- fill in for D. especially in evenings

Testing

Blood work people

Sputum Culture people

Medicine

Development

Pharmacist M. at primary pharmacy-- our primary pharmacist who works wonders for us and is very helpful

Pharmacist assistant -- checks us out and helps Pharm. M.

CF pharmacy pharmacists

RS pharmacy that does 3 months prescriptions

compound (mixed solutions) pharmacist

Insurance

Customer service reps

clinical and pharmacy reviewers -- people who determine whether a drug or procedure is needed

Pharmacy team -- tell you who to talk to and what your policy covers

Nurse L. -- insurance nurse that wants to help but who we don’t talk to (don’t want to muddy the waters)

Wow! This list got longer even than what I was expecting. At minimum, over 50 people a year have their job in part to help treat Tiffany’s CF and its side affects. Now, I wonder what that would look like in dollars and cents? I am sure that would be more than I think also.

Friday Fill-in

2010-06-05T01:23:00.000-07:00

It has in fact been a weird week.
I enjoy spending time with good friends.
Hoops and YoYo make me smile.
I could really do without the three digit temps (hmmm-sensing a theme here)

Let the "fun" begin-getting hooked up

2010-06-03T22:14:00.000-07:00

I had a last minute visit at the clinic today. Kudos to Dr. Gong-came in before heading on vacation to deal w/ me! Thnx CF team!

So things are still a little hairy. It doesn’t really seem as if I am fighting something specifically, but it is very obvious that things are not getting better. PFT’s are nearly the same as two weeks ago-good, that they aren’t down but bad that they aren’t up. So.....we are throwing the whole “kitchen sink” at things. Treating all the different bugs that I am growing. We are starting aggressive IV therapy tonite. Let the fun begin. I told my hubby he gets the triple whammy. A wife on Vanco (predose w/ benadryl=loopiness), Prednisone, and an antifungal-plus drugs every 8 hours. Should be an exciting couple of weeks. :-)

Here are the meds added today;

Meropenem to treat PA: IV every 8

Description: Penicillin class. To treat infections caused by gram-negative and gram positive bacteria, and anaerobes. Used especially for pseudomonas aeruginosa and staphylococcus aureus. Injectible.

Vancomycin to treat the MRSA: IV every 8

Description: Glycopeptide class. To treat infections caused by gram-positive bacteria. Injection.

Itraconazole to treat the Aspergillus: Oral

Description: Itraconazole is an anti-fungal drug. It prevents growth of several types of fungi by preventing the fungi from producing the membranes that surround the fungal cells.

So your health is like an everyday thing?

2010-05-31T22:22:00.001-07:00

This was a question posed to me yesterday and I will have to admit while it made me smile it also led to some real frustration. My initial internal response was not gracious...however, the Lord gave grace to respond with “yes, it sure is and I would really appreciate your prayer.”

One of the toughest parts of a chronic illness is that it is in fact an everyday thing. For some, it could just be as simple as a daily medication, for others, like myself, it could mean up to 4 hours (more when on IV’s) of maintenance (that means that my health is really a part time job). This is not something that I can choose to take lightly. 4 hours....that means that I have to strategically schedule out each day, sometimes choosing to say no to things I would love to do in order to maintain my health. This means that my friends understand that at the last minute I may have to stay home in order to get on top of something before it gets out of hand.

As you have opportunity to interact with those that have been dealing with a chronic illness, seek to interact with understanding. An understanding that what you see is really only a snapshot of the big picture, an understanding that flexibility on your part is such a gift, a desire to gain a glimpse into the reality of this everyday thing.

Friday Fill-in

2010-05-28T16:47:00.000-07:00

Memorial Day-a special thank you to those who have served or are serving us and our country. I am so thankful for the freedoms that you have afforded me
Celebrations are awesome-Happy Birthday to Mom and Kyle
My dog makes me smile
I could do just fine without three digit temperatures
Missing out on branding tomorrow-bummer
This long weekend I look forward to sweet food, fellowship with friends, as well as time with my honey. Happy 13th Sweetheart!

Clinic 5-21-2010

2010-05-24T23:58:00.000-07:00

I had a clinic visit on Friday. It can be summed up in one word-frustrating. For a while now I have been struggling. My PFT’s have been on a roller coaster this semester. They are down once again. Urghh! There is no clear reason as to why they should be down. I have already been on two rounds of IV’s and that doesn’t seem to be the right solution at this time.

So, lot’s of questions. What is happening? Are we missing something big? What could be causing these drastic declines? The doc is actively pursuing trying to get my asthma component settled down and then researching if it may be something fungal. So more tests and more questions. Good thing I know the One who is in control of it all-down to each minute detail. I choose to rest in Him.