(Friday, July 2, 2010) “Our First Road Trip”
On our trip to the Mayo Clinic in Jacksonville, Patra’s cell phone crashed. “Can you hear me now?” So while I took a nap, she spent Saturday afternoon at the cell phone store in Gainesville exchanging her phone. Later that night she discovered that her new cell phone would not accept a charge. So after lunch on Sunday, we were back at the cell phone store. The young lady that “helped” her kept saying “your phone is crazy.” I don’t want to name our cell phone company, but the process of fixing her phone was not a “sprint” but a marathon. After waiting a while outside, I went into the store thinking my “appearance” might expedite the process. I would have wanted to quickly get me out of the waiting area. I honestly believe I could have passed out on the floor and they would not have moved any more expeditiously.
Speaking of “appearance,” I mediated a case last week and noticed well after it started that I had never buttoned or even straightened my collar after putting on my tie. I was horrified when I went to the bathroom and saw myself in the mirror. I went back and apologized to the clients. At least my zipper was up. One good thing about being sick is you get some “passes.”
“It’s OK, Mr. Bugg, I just figured that in your condition that was how you dressed.”
As we drove into Jacksonville, I was anxious. Sometimes it is difficult to believe that our lives have changed so much so quickly. A year ago, I would not have imagined going to the Mayo Clinic. Even less on my radar screen a year ago was the fact that such a trip would be caused by a “nasty little disease.” I had never even heard of amyloidosis. So I closed my eyes (which was OK because Patra was driving) and prayed. As has happened since the beginning of this journey, scripture came to my mind and brought comfort and peace, relieving my anxiety.
The Jacksonville Mayo Clinic is an absolutely beautiful facility. It is like a resort with beautiful fountains, gardens, art work, etc. Like Moffitt, it is staffed by wonderful people who are very caring and helpful. We met with the doctor who was quite impressive and very knowledgeable about my disease. It was a “hard visit.” “Hard” because we didn’t hear a lot of encouraging news. The doctor was brutally honest. There was no “sugar coating.” (At times, I wanted to put my hands over my ears and loudly chant “la la la la la.”)
He emphasized that I have a “nasty little disease” and the prognosis is not good. By and large, the meeting was a confirmation of what I had learned at Moffitt. There are no cures but medical advances are made every day. He explained that the doctors have two goals – first, to prolong my life, which will hopefully allow time for medical advances to find an answer. The second goal is to give me a good quality of life. (For the record, I firmly support both of these goals!)
He will write a letter to my doctor at Moffitt with specific recommendations for additional tests and treatment. I have an appointment next week at Moffitt so we can discuss this input.
During the drive home, Patra and I had a serious but wonderful conversation. (The conversation lasted until I had to take a nap.) We often tease that after so many years of marriage we share a brain. We complete each other’s thoughts and sentences. One of us will say something and the other says, “that is just what I was thinking”. It is very comforting to know that Patra and I are united in approach and perspective with respect to this journey.
We agree that our #1 goal is that God use whatever happens to His glory! We don’t know how that will happen. There have been some “hints” even in the response to this blog. We have been blessed by people who say they have been reading about our journey and we have been humbled by those who say they have been encouraged by the blog and are praying for us.
We pray that the doctors’ goals of living longer and having a good quality of life are part of His will, but we agree that our primary goal is that God use whatever occurs to bring glory and honor to His name. We pray that we will be faithful to do our part. We know that we were created for His glory. “Everyone who is called by My name, And whom I have created for My glory…” Isaiah 43:7 (NASB)
It is difficult to accept the “hard news” because I have been doing well. I am definitely getting stronger. For example, until this week, after dressing for work, I would need to sit and rest for several minutes to get enough strength to get in the car and have Patra drive me to the office.
I appreciate that you remember to pray for Patra. When we returned from Jacksonville, she had an endoscopy at Morton Plant. It revealed that she has a “healing ulcer.” She had experienced pain while we were in the hospital at Moffitt in March. It is not easy being a caregiver. The most recent issue of Time magazine (July 5, 2010) reported the following: “Living with an illness can be as taxing to the caregiver as it is to the patient. People who tend to ailing loved ones over long periods frequently suffer stress, burnout and poor health.” We can testify to the truth of this statement.
Tuesday, I drove myself to get a haircut. It was definitely the shortest haircut on record.
“Just trim it up, don’t take any length off the top.”
“There is no length on the top.”
Until next Friday. God willing.
Bob
On our trip to the Mayo Clinic in Jacksonville, Patra’s cell phone crashed. “Can you hear me now?” So while I took a nap, she spent Saturday afternoon at the cell phone store in Gainesville exchanging her phone. Later that night she discovered that her new cell phone would not accept a charge. So after lunch on Sunday, we were back at the cell phone store. The young lady that “helped” her kept saying “your phone is crazy.” I don’t want to name our cell phone company, but the process of fixing her phone was not a “sprint” but a marathon. After waiting a while outside, I went into the store thinking my “appearance” might expedite the process. I would have wanted to quickly get me out of the waiting area. I honestly believe I could have passed out on the floor and they would not have moved any more expeditiously.
Speaking of “appearance,” I mediated a case last week and noticed well after it started that I had never buttoned or even straightened my collar after putting on my tie. I was horrified when I went to the bathroom and saw myself in the mirror. I went back and apologized to the clients. At least my zipper was up. One good thing about being sick is you get some “passes.”
“It’s OK, Mr. Bugg, I just figured that in your condition that was how you dressed.”
As we drove into Jacksonville, I was anxious. Sometimes it is difficult to believe that our lives have changed so much so quickly. A year ago, I would not have imagined going to the Mayo Clinic. Even less on my radar screen a year ago was the fact that such a trip would be caused by a “nasty little disease.” I had never even heard of amyloidosis. So I closed my eyes (which was OK because Patra was driving) and prayed. As has happened since the beginning of this journey, scripture came to my mind and brought comfort and peace, relieving my anxiety.
The Jacksonville Mayo Clinic is an absolutely beautiful facility. It is like a resort with beautiful fountains, gardens, art work, etc. Like Moffitt, it is staffed by wonderful people who are very caring and helpful. We met with the doctor who was quite impressive and very knowledgeable about my disease. It was a “hard visit.” “Hard” because we didn’t hear a lot of encouraging news. The doctor was brutally honest. There was no “sugar coating.” (At times, I wanted to put my hands over my ears and loudly chant “la la la la la.”)
He emphasized that I have a “nasty little disease” and the prognosis is not good. By and large, the meeting was a confirmation of what I had learned at Moffitt. There are no cures but medical advances are made every day. He explained that the doctors have two goals – first, to prolong my life, which will hopefully allow time for medical advances to find an answer. The second goal is to give me a good quality of life. (For the record, I firmly support both of these goals!)
He will write a letter to my doctor at Moffitt with specific recommendations for additional tests and treatment. I have an appointment next week at Moffitt so we can discuss this input.
During the drive home, Patra and I had a serious but wonderful conversation. (The conversation lasted until I had to take a nap.) We often tease that after so many years of marriage we share a brain. We complete each other’s thoughts and sentences. One of us will say something and the other says, “that is just what I was thinking”. It is very comforting to know that Patra and I are united in approach and perspective with respect to this journey.
We agree that our #1 goal is that God use whatever happens to His glory! We don’t know how that will happen. There have been some “hints” even in the response to this blog. We have been blessed by people who say they have been reading about our journey and we have been humbled by those who say they have been encouraged by the blog and are praying for us.
We pray that the doctors’ goals of living longer and having a good quality of life are part of His will, but we agree that our primary goal is that God use whatever occurs to bring glory and honor to His name. We pray that we will be faithful to do our part. We know that we were created for His glory. “Everyone who is called by My name, And whom I have created for My glory…” Isaiah 43:7 (NASB)
It is difficult to accept the “hard news” because I have been doing well. I am definitely getting stronger. For example, until this week, after dressing for work, I would need to sit and rest for several minutes to get enough strength to get in the car and have Patra drive me to the office.
I appreciate that you remember to pray for Patra. When we returned from Jacksonville, she had an endoscopy at Morton Plant. It revealed that she has a “healing ulcer.” She had experienced pain while we were in the hospital at Moffitt in March. It is not easy being a caregiver. The most recent issue of Time magazine (July 5, 2010) reported the following: “Living with an illness can be as taxing to the caregiver as it is to the patient. People who tend to ailing loved ones over long periods frequently suffer stress, burnout and poor health.” We can testify to the truth of this statement.
Tuesday, I drove myself to get a haircut. It was definitely the shortest haircut on record.
“Just trim it up, don’t take any length off the top.”
“There is no length on the top.”
Until next Friday. God willing.
Bob
Comments
God bless you, hope your phone is revived and pray for Patra's healing as well as yours. Yes, the hope that miracles are occurring every day in the field of medicine; we pray for a quick find to "cure" you!
Take care my friends!
Ted & Carol W
Love, Karen H
but know that you have come a long way so far and with God's help you will continue to improve...love spending time with you and looking forward to seeing you this weekend..your courage is such an inspiration to us.. so happy we met you and have gotten to know you all. Jon/Marilyn
intersection, and when the light turns yellow, he hits the brakes. The woman behind him goes
ballistic. She honks her horn at him; she yells her frustration in no uncertain terms; she rants
and gestures. While she is in mid-rant, someone taps on her window. She looks up and sees
a policeman. He invites her out of her car and takes her to the station where she is searched
and fingerprinted and put in a cell. After a couple of hours, she is released, and the arresting
officer gives her her personal effects, saying, “I’m very sorry for the mistake, ma’am. I pulled
up behind your car while you were blowing your horn, using bad gestures and bad language. I
noticed the ‘What Would Jesus Do?’ bumper sticker, the ‘Choose Life’ license plate holder, the
‘Follow Me to Sunday School’ window sign, the Christian fish emblem on your trunk, and I naturally assumed you had stolen the car.”
Ted Leamons
Kari Mattingly