Kent and I went to the cardiologist last week for a follow-up exam. The good news is that there seems to have been no permanent damage to his heart from the Churg-Strauss Syndrome. That is a big relief for both of us. Next week we will have appointments with both the rheumatologist and the neurologist. Kent may need another infusion of chemo, but we hope not.
I hope we have more good news after the upcoming doctor appointments.
Kent has been experiencing more numbness in his right hand and his right leg. It is probably because of the doctors have been changing the dosages of some of his medication. It is hard to know if the side-effects of the drugs are worse than the symptoms of the syndrome. I think the doctors will soon get it figured out. At least I hope they do.
Meanwhile, we appreciate all the thoughts and prayers you send Kent's way.
Tuesday, February 23, 2010
Monday, February 15, 2010
Similarities
Last weekend I attended my masters class. This time it was our creative movement class. We discussed and practiced many different ways to incorporate movement into our regular classroom activities. It was great to see how teaching second graders about the states of matter could also include movement. The teacher had her students (us) move like the molecules in a solid, then a liquid and finally as a gas. I am sure actual second graders would have been more creative in their interpretations. I presented a lesson on the layers of the earth, what they are made of and how they move. I asked the students to get into groups representing the Inner Core, the Outer Core, the Mantle and the Crust. They came up with a movement to represent their layer of the earth as well as a chant they could say while doing their movement which would include some information about what the layer is composed of and what sort of movement goes on in that layer. It was fun to see members of my cohort enjoying a science lesson.
The Sunday afternoon part of the class was when we presented our group creative movement project. Our cohort was split into four groups and we had to come up with a movement piece that reflected our similarities and our individual natures. When we first got into our group, I thought we were not going to have much in the way of similarities. However, as we started discussing who and what we were, we found many similarities. The project we finally came up with was a slide show with photos of ourselves and our ancestors and our descendants to some gentle music. We moved as the music was playing (I wouldn't call what we did dancing exactly.) One of our group read the poem by Robert Frost, Two Roads. After she finished we did what is called active stillness (frozen poses) while each of us told or recited a quote that meant something to us. It was amazing how well the quotes all fit together. We then went up on some risers in the space we were using and joined to each other with some beautiful scarves. We had many of our class feeling something special by the time we ended. I was amazed at how similar, not only our group was, but how much we had in common with most of the cohort. By the time we finished the discussion on our presentation, I felt we should sing As Sisters in Zion.
I find we are more similar as women than I had previously thought. We need to celebrate our similarity as well as our uniqueness.
The Sunday afternoon part of the class was when we presented our group creative movement project. Our cohort was split into four groups and we had to come up with a movement piece that reflected our similarities and our individual natures. When we first got into our group, I thought we were not going to have much in the way of similarities. However, as we started discussing who and what we were, we found many similarities. The project we finally came up with was a slide show with photos of ourselves and our ancestors and our descendants to some gentle music. We moved as the music was playing (I wouldn't call what we did dancing exactly.) One of our group read the poem by Robert Frost, Two Roads. After she finished we did what is called active stillness (frozen poses) while each of us told or recited a quote that meant something to us. It was amazing how well the quotes all fit together. We then went up on some risers in the space we were using and joined to each other with some beautiful scarves. We had many of our class feeling something special by the time we ended. I was amazed at how similar, not only our group was, but how much we had in common with most of the cohort. By the time we finished the discussion on our presentation, I felt we should sing As Sisters in Zion.
I find we are more similar as women than I had previously thought. We need to celebrate our similarity as well as our uniqueness.
Tuesday, February 2, 2010
An Update on our Family Situation
It has been a while since I wrote. Much has happened since then. My husband has been diagnosed with Churg-Strauss Syndrome which is pretty rare. Only 3 in 1,000,000 people have this syndrome. It is an auto-immune type of problem. In my husband's case it attacked his peripheral nerves in his hands and feet first. It was starting to spread up his arms and legs into the chest area. That is when we took him to the hospital emergency room and they sent him to the university hospital where he stayed in the neuroscience ICU for a little over a week. The diagnoses of Churg-Strauss Syndrome took several days and then they had to work hard to get his heart rate down from the 130 - 140 range to under 100. He had his first chemo treatment while in ICU. (He has had three more chemo treatments since.)
After he was more stable they transferred him to the immediate care area of the neuroscience floor. There he made progress and started to learn how to do things left-handed. He also was able to get up and take a few steps with the walker! It was great to see him starting to move around again.
When they felt he was ready, he was transferred to a rehabilitation center fairly close to home. I was very relieved when this occurred since I am not comfortable driving in Portland. It is a confusing city to drive in. At the rehabilitation center he started to work with physical therapists and occupational therapists to get back the use of some of his muscles. His right hand was affected more than his left. He still has tingling and burning sensations in his hands and feet all the time. He is taking a drug called Lyrica which helps with the nerve pain, but it is a gradual process. Regular pain meds just don't work on nerve pain. He is also on prednizone which makes life interesting in other ways.
My husband is home now and making some progress. It is almost always incremental, but it is there. He is now able to walk around our home without the walker if he goes slowly and is within reach of something to grab onto when he loses his balance. He has learned how to eat left-handed pretty well using some built-up utensils. (silverware with fat handles) He signs his name holding the pen in his right hand and using his left to guide the pen. He has transferred his computer mouse to the left hand and manages fairly well with it. We have a nice rolling walker for him to use outside of home. I guess there may be one little perk in this scenario. We had to get a disabled parking placard so we do get to park closer to most entrances now.
Kent still tires easily. He has a great deal of swelling in his hands and feet. The cardiology people are still trying to figure out why that is occurring. The rhuematology people are working to keep the other symptoms at bay. They are also in charge of his chemo treatments. The neurology people are interested to see how much of the functions of his hands and feet comes back. We are becoming very good friends with the people at the pharmacy. He is taking quite a few different medications. Fortunately, we have a nephew who has just graduated from pharmacy school and is glad to give us advice and information about what drugs have been prescribed. This has been a great learning experience for our family.
I am very grateful to be married to such a wonderful man. He has kept an optimistic outlook through most of this ordeal. He does have his moments of discouragement, but it usually occurs when one of his medication dosages is being changed. They warned us that might happen. All in all we feel we have been greatly blessed. We have had wonderful people from the Church and from our families come to help out. They have done everything from putting in a new toilet to cleaning my house. Some have come to give massages and work with the physical therapy exercises my husband must do. People have come to help with our children (one who is autistic and one who has Asperger's syndrome.)and have brought delicious dinners. Most of all people have been so good about including Kent and our family in their prayers. The power of prayer is amazing. We feel the comfort and love of the Holy Spirit in so many ways. This we are very grateful for.
My husband is a computer network engineer. He is able to do much of his work from home through telephone support and taking control of his customers' computers remotely. He does go on site at times. This really wears him out though. Hopefully, he will continue to gain stamina. We are grateful he is able to do some work still even though he is not functioning at full capacity.
It is like they say, if it doesn't kill you it will make you stronger. I feel that has happened with our family. We are closer now and we find joy in small things.
Life is good!
After he was more stable they transferred him to the immediate care area of the neuroscience floor. There he made progress and started to learn how to do things left-handed. He also was able to get up and take a few steps with the walker! It was great to see him starting to move around again.
When they felt he was ready, he was transferred to a rehabilitation center fairly close to home. I was very relieved when this occurred since I am not comfortable driving in Portland. It is a confusing city to drive in. At the rehabilitation center he started to work with physical therapists and occupational therapists to get back the use of some of his muscles. His right hand was affected more than his left. He still has tingling and burning sensations in his hands and feet all the time. He is taking a drug called Lyrica which helps with the nerve pain, but it is a gradual process. Regular pain meds just don't work on nerve pain. He is also on prednizone which makes life interesting in other ways.
My husband is home now and making some progress. It is almost always incremental, but it is there. He is now able to walk around our home without the walker if he goes slowly and is within reach of something to grab onto when he loses his balance. He has learned how to eat left-handed pretty well using some built-up utensils. (silverware with fat handles) He signs his name holding the pen in his right hand and using his left to guide the pen. He has transferred his computer mouse to the left hand and manages fairly well with it. We have a nice rolling walker for him to use outside of home. I guess there may be one little perk in this scenario. We had to get a disabled parking placard so we do get to park closer to most entrances now.
Kent still tires easily. He has a great deal of swelling in his hands and feet. The cardiology people are still trying to figure out why that is occurring. The rhuematology people are working to keep the other symptoms at bay. They are also in charge of his chemo treatments. The neurology people are interested to see how much of the functions of his hands and feet comes back. We are becoming very good friends with the people at the pharmacy. He is taking quite a few different medications. Fortunately, we have a nephew who has just graduated from pharmacy school and is glad to give us advice and information about what drugs have been prescribed. This has been a great learning experience for our family.
I am very grateful to be married to such a wonderful man. He has kept an optimistic outlook through most of this ordeal. He does have his moments of discouragement, but it usually occurs when one of his medication dosages is being changed. They warned us that might happen. All in all we feel we have been greatly blessed. We have had wonderful people from the Church and from our families come to help out. They have done everything from putting in a new toilet to cleaning my house. Some have come to give massages and work with the physical therapy exercises my husband must do. People have come to help with our children (one who is autistic and one who has Asperger's syndrome.)and have brought delicious dinners. Most of all people have been so good about including Kent and our family in their prayers. The power of prayer is amazing. We feel the comfort and love of the Holy Spirit in so many ways. This we are very grateful for.
My husband is a computer network engineer. He is able to do much of his work from home through telephone support and taking control of his customers' computers remotely. He does go on site at times. This really wears him out though. Hopefully, he will continue to gain stamina. We are grateful he is able to do some work still even though he is not functioning at full capacity.
It is like they say, if it doesn't kill you it will make you stronger. I feel that has happened with our family. We are closer now and we find joy in small things.
Life is good!
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