Susan and I are ready to write the last post to this blog. We feel that we have all the answers that are available and it’s our task now to walk out recovery and return to normal life.
After visiting with an internal medicine doctor at Mayo on Friday 2/26, we came back to Athens and returned to Mayo the following Monday night. Over the next two days Susan had several tests done, saw a neurologist, a psychiatric PA and the internist again. Mayo had all our previous labs and reviewed them. In the end, their work confirmed what our other doctors had speculated – that the weakness and paralysis was indeed conversion disorder. Mayo’s approach was helpful because the internist looked at all the results from tests and exams and helped us to understand the whole picture.
The fact that no “organic” problem is present is a tremendous blessing. Ultimately, no one can say for sure why this happened when it did. Mayo did confirm that Susan is in perimenopause, a time leading up to her “change of life”. That could have amplified the effects of stress that was otherwise manageable for her. We are simply thankful that she will eventually make a full recovery. The results from Mayo will go to our local doctors. They will work with her on an ongoing basis to help control anxiety with medication, exercise, diet, etc. While the prognosis is excellent in the end, no one can tell us how long recovery will take.
So, how is Susan doing? Well, better but not recovered. Every day is marked by either fatigue or anxiety or a combination of both, but it’s clear that she is doing better each week. For instance, two weeks ago she struggled to take a 20 minute walk which left her exhausted. This weekend we took 2 walks, 50 minutes each and she was still able to do some things afterwards. Even so, something like being late for church can cause anxiety and tears can come for no reason. She is handling it all quite well, full of faith for recovery, pushing herself to be as productive as she can and focusing on regaining her health.
Once again I will thank you all on Susan’s behalf for your support and prayers. I’ll ask Susan to keep her Facebook profile updated from here on out.
It’s important at this point to say how much Susan and I are thankful to our Lord and Savior Jesus Christ through this ordeal. Contrary to what some might think, sickness and suffering does not discourage us. Assurance of salvation and the rich life we have in Christ, which lasts for eternity, is much more valuable than momentary health and prosperity. There is only one God and he is the Pearl of Great Price!
God Bless you all!
Sunday, March 7, 2010
Friday, February 26, 2010
Mayo Clinic Jacksonville
This morning Susan and I are back in familiar territory. We are sitting in the cafeteria of the Mayo Clinic in Jacksonville, Florida, looking out at Florida sunshine, sago palms and pittosporum hedges, much like the landscaping at our house in Lake Mary. We decided to make the trip to Mayo earlier this week after talking with several friends and doctors about Susan’s progress and what would be best for her.
Susan is receiving excellent care from a psychiatric clinic in Athens. They have helped her cope with the anxiety and physical symptoms and begun adjusting her medications. Still, the anxiety and weakness persist. The psych people are not trained to answer questions about the possible physical sources of the problem. It’s clear that anxiety is a problem, but why is it there? Why did it suddenly present itself when it did? Conversion disorder is a diagnosis of exclusion, which means that all other possible causes must be ruled out first. That hasn’t happened yet, and is why we are now at Mayo this morning.
Mayo has a worldwide reputation for diagnosis. Unlike most clinics, they will consult among specialties to find the underlying cause. We hope to leave Mayo with either a physical diagnosis or with the knowledge that no such diagnosis is possible.
Susan will visit with an internal medicine doctor today. We expect to be back next week for more tests and evaluation.
The University of Georgia has been incredibly supportive. Susan has been helped by her colleagues so she can take the time to be here, and our UGA medical insurance covers our visits to Mayo. North Georgia Bank is allowing me to work remotely while here. Many, many friends and co-workers are praying for us. We are truly blessed.
Susan is receiving excellent care from a psychiatric clinic in Athens. They have helped her cope with the anxiety and physical symptoms and begun adjusting her medications. Still, the anxiety and weakness persist. The psych people are not trained to answer questions about the possible physical sources of the problem. It’s clear that anxiety is a problem, but why is it there? Why did it suddenly present itself when it did? Conversion disorder is a diagnosis of exclusion, which means that all other possible causes must be ruled out first. That hasn’t happened yet, and is why we are now at Mayo this morning.
Mayo has a worldwide reputation for diagnosis. Unlike most clinics, they will consult among specialties to find the underlying cause. We hope to leave Mayo with either a physical diagnosis or with the knowledge that no such diagnosis is possible.
Susan will visit with an internal medicine doctor today. We expect to be back next week for more tests and evaluation.
The University of Georgia has been incredibly supportive. Susan has been helped by her colleagues so she can take the time to be here, and our UGA medical insurance covers our visits to Mayo. North Georgia Bank is allowing me to work remotely while here. Many, many friends and co-workers are praying for us. We are truly blessed.
Thursday, February 11, 2010
Turning the Corner
The past week has been a roller coaster of emotions for Susan and me. What I did not mention in my last blog is that the neurologists at MCG suggested that Susan might be suffering from conversion disorder. It’s a diagnosis that neurologists give when a person has neurologic symptoms that cannot be explained. It was the suggestion that this might be Susan’s problem, rather than a straightforward physical problem, that sent us into a tailspin last week. Was the problem, as some say, "all in her head"? Was she somehow to blame for it?
I could run down the detail, but suffice it to say that we spent last week processing what we’d heard at MCG. I had a bout with a stomach virus and Susan continued to have weakness and lack of stamina. We both struggled to do some shopping Saturday (her with weakness and me with the virus), and went home at half time from the Super Bowl party Sunday at our friends the Tanner’s.
By Monday it was clear that Susan was not just going to get better on her own. The inability to live life was very exasperating and disappointing. However, we had appointments with an OB/GYN and the family practice doctor Tuesday. They both spent a lot of time with us, discussing what we’d learned at MCG and what options we had. They both suggested seeing a psychiatrist as well as getting some additional blood tests to address any factors that might have contributed to the onset of conversion.
Susan spent yesterday afternoon at a local psychiatrist’s office. They were able to actually begin treatment for conversion disorder. Susan came home tired but having turned a corner and feeling very encouraged. She went today for more blood tests and is still tired, but things are much different around the house tonight. We have hope.
It’s not clear how quickly Susan will recover or when she’ll be able to return to work. For now she will just push it as much as she can and stay in touch weekly with her doctors to assess her progress. We’re taking it one day at a time, thankful that she can make a full recovery and that we are getting very good care.
I could run down the detail, but suffice it to say that we spent last week processing what we’d heard at MCG. I had a bout with a stomach virus and Susan continued to have weakness and lack of stamina. We both struggled to do some shopping Saturday (her with weakness and me with the virus), and went home at half time from the Super Bowl party Sunday at our friends the Tanner’s.
By Monday it was clear that Susan was not just going to get better on her own. The inability to live life was very exasperating and disappointing. However, we had appointments with an OB/GYN and the family practice doctor Tuesday. They both spent a lot of time with us, discussing what we’d learned at MCG and what options we had. They both suggested seeing a psychiatrist as well as getting some additional blood tests to address any factors that might have contributed to the onset of conversion.
Susan spent yesterday afternoon at a local psychiatrist’s office. They were able to actually begin treatment for conversion disorder. Susan came home tired but having turned a corner and feeling very encouraged. She went today for more blood tests and is still tired, but things are much different around the house tonight. We have hope.
It’s not clear how quickly Susan will recover or when she’ll be able to return to work. For now she will just push it as much as she can and stay in touch weekly with her doctors to assess her progress. We’re taking it one day at a time, thankful that she can make a full recovery and that we are getting very good care.
Wednesday, February 3, 2010
Disappointment & New Direction
It’s Wednesday morning, the sun is out after a dreary Tuesday and things are looking up at the Bush household. Yesterday was rough for both Susan and me, but we have some new direction and hope this morning.
The trip to Augusta essentially told us that it's unlikely the problem is neuromuscular and did not give us a lot of other options to pursue. The neurologists at MCG said in so many words that it was unlikely they’d find a neuromuscular problem and suggested it might be stress related. That took us so aback that we didn’t ask any more questions. We took the news very hard. There were a lot of raw emotions, confusion, fear and guilt. We alternately talked, rested and worked yesterday as we let the news sink in and considered our options.
Many people have suggested a long list of other options to pursue, and as the day went on we began to think about them. We also talked with our friends the Cooke’s (Paul is our pastor) this morning. At this point it seems unlikely that stress alone is the sole cause of Susan’s symptoms. It is more likely that there are hormonal problems at work. Susan’s next steps will be to see her OB/GYN in Athens and to work with a doctor in Orlando who has expertise in women’s health.
We are also more aware than ever of the spiritual dimension of health. We continue to pray and see the Lord’s hand in what we are going through. Susan and I both have to face fears and see how the attitudes of our hearts affect her health.
There are still blood tests pending at MCG that may shed some light, but most likely it will be the end of next week before we have more information. There’s no reason to believe that anything will change until then, so it may be awhile until I blog again.
Thanks again for your prayers and support.
The trip to Augusta essentially told us that it's unlikely the problem is neuromuscular and did not give us a lot of other options to pursue. The neurologists at MCG said in so many words that it was unlikely they’d find a neuromuscular problem and suggested it might be stress related. That took us so aback that we didn’t ask any more questions. We took the news very hard. There were a lot of raw emotions, confusion, fear and guilt. We alternately talked, rested and worked yesterday as we let the news sink in and considered our options.
Many people have suggested a long list of other options to pursue, and as the day went on we began to think about them. We also talked with our friends the Cooke’s (Paul is our pastor) this morning. At this point it seems unlikely that stress alone is the sole cause of Susan’s symptoms. It is more likely that there are hormonal problems at work. Susan’s next steps will be to see her OB/GYN in Athens and to work with a doctor in Orlando who has expertise in women’s health.
We are also more aware than ever of the spiritual dimension of health. We continue to pray and see the Lord’s hand in what we are going through. Susan and I both have to face fears and see how the attitudes of our hearts affect her health.
There are still blood tests pending at MCG that may shed some light, but most likely it will be the end of next week before we have more information. There’s no reason to believe that anything will change until then, so it may be awhile until I blog again.
Thanks again for your prayers and support.
Monday, February 1, 2010
No Silver Bullet
We are back in Athens tonight after a very long and tiring day. We spent the whole afternoon at The Medical College of Georgia in Augusta. After a thorough checkup and visit with Drs. Rivner and Shepard at the neuroscience unit we felt no need to continue on to Mayo.
The big question – what’s causing this? – is still unanswered. The visit to MCG confirmed the work done at St. Mary’s in Athens. We have more to share, but at this point there’s no “silver bullet” and there is unlikely to be one in the coming weeks.
We are both emotionally and physically spent. I’ll write more tomorrow.
Jack
The big question – what’s causing this? – is still unanswered. The visit to MCG confirmed the work done at St. Mary’s in Athens. We have more to share, but at this point there’s no “silver bullet” and there is unlikely to be one in the coming weeks.
We are both emotionally and physically spent. I’ll write more tomorrow.
Jack
Sunday, January 31, 2010
Some Perspective
Susan is doing much better this morning. She was very weak when she first got up but after her beloved coffee and French Vanilla creamer, and a little backrub she's perked up. She is sitting at the window watching the birds and waiting for her bacon, eggs and grits for breakfast. She says this makes her sound like a pig, but I'll actually end up eating most of it. She keeps talking about doing laundry later today. Fat chance.
Berny Schulman, a longtime, close friend of ours from Orlando called this morning to ask how we are doing. People are praying for us all over the country. We are truly blessed!
My friend and co-worker Vernon Tanner lost his mother this weekend. It was a difficult passing for her and Vernon's family. Our situation pales compared to the grief Vernon and Karen are experiencing, so we are focusing our prayers and thoughts on them this morning.
Susan says she would love to use the free time she has to pray for others. If you have prayer requests, you can post them here or send them to susan4jack@gmail.com.
Jack
Berny Schulman, a longtime, close friend of ours from Orlando called this morning to ask how we are doing. People are praying for us all over the country. We are truly blessed!
My friend and co-worker Vernon Tanner lost his mother this weekend. It was a difficult passing for her and Vernon's family. Our situation pales compared to the grief Vernon and Karen are experiencing, so we are focusing our prayers and thoughts on them this morning.
Susan says she would love to use the free time she has to pray for others. If you have prayer requests, you can post them here or send them to susan4jack@gmail.com.
Jack
Saturday, January 30, 2010
It's been 3 weeks
Good morning, friends and family of Susan Bush. This is Jack writing. I am going to use this blog to keep you all up-to-date on Susan's mysterious condition, our plans and progress as we seek a diagnosis and cure.
Most of you know the history, but I'll recap quickly for anyone who wants to get up to speed. On Sunday January 10, after our weekly church service, Susan began to feel weak and was having difficulty standing. She had to be helped to the car, came home and laid down for the rest of the day. That was the first of many "episodes" she's had where she experiences a rapid loss of muscle strength throughout her entire body. She does not pass out, get dizzy or confused but does have difficulty talking, opening her eyes, writing and at times breathing. She's worked 1 or 2 days since then. She has good and bad days, but the condition seems to be getting worse. She's been unable to sit up at the desk for more than 30 minutes or so this week. Reading can be frustrating because of difficulty focusing on close objects. Even conversation can tire her out.
The last episode happened yesterday (Friday 1/29) afternoon. Susan felt weak all day. At about 4 PM, after lying on the couch watching a movie, she started to feel short of breath. Kipper was at home studying, and at 4:30 he carried her to the car and met me at St. Mary's emergency room. She was as bad as I've seen her when she arrived, almost unable to speak or support her weight at all. The ER docs determined her breathing was fine after a couple hours of observation and a chest X-ray. She began recovering after about an hour in the ER, and at 8 PM she was much better, so they sent her home.
This morning she is still weak but doing much better, sitting up and walking around the house.
We've had a lot of tests done for a lot of different disorders, but so far everything has come back negative. That means some things such as MS or a brain tumor are unlikely to be the cause. Until something comes back positive, though, nothing can be completely ruled out. The symptoms are similar to myasthenia gravis, where the immune system attacks the body's neurotransmitters, compounds in the body that transmit nerve impulses.
On Monday Feb 1 we have an appointment with Dr. Michael Rivner in Augusta at the Medical College of Georgia. Dr. Rivner is a national expert on neuromuscular problems. There are several other neurologists at MCG that he can refer us to if he cannot help Susan. We also have an appointment at the Mayo Clinic on Tuesday 2/2 as a backup in case MCG doesn't seem like they are going to be able to help. We've talked to several friends in the medical community and have sent Susan's medical records to the family doctor that treated us in Lake Mary, FL before we moved to Athens. I am hopeful that we'll have a diagnosis by the end of next week, either from MCG or The Mayo Clinic.
We have heard from many, many people who love Susan and want to help. Our local church family (Crossway Fellowship Church) is providing meals and has helped out around the house. They have been fantastic! We have had meals delivered for two weeks now and are being very well cared for.
Please continue to pray for Susan. We believe in the power of prayer to Jesus Christ, our savior, who is both willing and able to save us from the power of sin and death. We would love to see Susan healed miraculously, so please pray to that end, but also please pray that the doctors treating Susan will find a diagnosis and cure. We also need prayer so we can walk through this with faith, hope and love no matter the outcome.
Thanks again to all our wonderful family and friends. We love you and will do our best to let you know what's happening!
Jack
Most of you know the history, but I'll recap quickly for anyone who wants to get up to speed. On Sunday January 10, after our weekly church service, Susan began to feel weak and was having difficulty standing. She had to be helped to the car, came home and laid down for the rest of the day. That was the first of many "episodes" she's had where she experiences a rapid loss of muscle strength throughout her entire body. She does not pass out, get dizzy or confused but does have difficulty talking, opening her eyes, writing and at times breathing. She's worked 1 or 2 days since then. She has good and bad days, but the condition seems to be getting worse. She's been unable to sit up at the desk for more than 30 minutes or so this week. Reading can be frustrating because of difficulty focusing on close objects. Even conversation can tire her out.
The last episode happened yesterday (Friday 1/29) afternoon. Susan felt weak all day. At about 4 PM, after lying on the couch watching a movie, she started to feel short of breath. Kipper was at home studying, and at 4:30 he carried her to the car and met me at St. Mary's emergency room. She was as bad as I've seen her when she arrived, almost unable to speak or support her weight at all. The ER docs determined her breathing was fine after a couple hours of observation and a chest X-ray. She began recovering after about an hour in the ER, and at 8 PM she was much better, so they sent her home.
This morning she is still weak but doing much better, sitting up and walking around the house.
We've had a lot of tests done for a lot of different disorders, but so far everything has come back negative. That means some things such as MS or a brain tumor are unlikely to be the cause. Until something comes back positive, though, nothing can be completely ruled out. The symptoms are similar to myasthenia gravis, where the immune system attacks the body's neurotransmitters, compounds in the body that transmit nerve impulses.
On Monday Feb 1 we have an appointment with Dr. Michael Rivner in Augusta at the Medical College of Georgia. Dr. Rivner is a national expert on neuromuscular problems. There are several other neurologists at MCG that he can refer us to if he cannot help Susan. We also have an appointment at the Mayo Clinic on Tuesday 2/2 as a backup in case MCG doesn't seem like they are going to be able to help. We've talked to several friends in the medical community and have sent Susan's medical records to the family doctor that treated us in Lake Mary, FL before we moved to Athens. I am hopeful that we'll have a diagnosis by the end of next week, either from MCG or The Mayo Clinic.
We have heard from many, many people who love Susan and want to help. Our local church family (Crossway Fellowship Church) is providing meals and has helped out around the house. They have been fantastic! We have had meals delivered for two weeks now and are being very well cared for.
Please continue to pray for Susan. We believe in the power of prayer to Jesus Christ, our savior, who is both willing and able to save us from the power of sin and death. We would love to see Susan healed miraculously, so please pray to that end, but also please pray that the doctors treating Susan will find a diagnosis and cure. We also need prayer so we can walk through this with faith, hope and love no matter the outcome.
Thanks again to all our wonderful family and friends. We love you and will do our best to let you know what's happening!
Jack
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