Irina and Tessa took a trip to Michigan in October to visit Jennifer, Micah, and Annalia. Here are a few photos that Irina took while they were there!
Tuesday, October 27, 2009
Jennifer and Annalia!
Irina and Tessa took a trip to Michigan in October to visit Jennifer, Micah, and Annalia. Here are a few photos that Irina took while they were there!
Tuesday, October 20, 2009
Delightful Photo Op
Shawn saw this little guy land in one of my flowers on the deck while he was doing school, and he was afraid that the bird had died, as it was lying on its side at the time. We rushed outside to perform CPR or something like it, and I was able to help him/her get back on his/her feet. I would like to think that he/she was grateful enough for that boost to pose for some awesome photos. However, I presume that it was more likely that he/she had flown into a window and was stunned for a moment. I am thankful to report that the story had a good ending, as he/she flew into a nearby tree after his photo shoot. Be sure to click on the photo so that you can see the intricate detail we were able to capture from being so close to him/her!
Friday, October 9, 2009
A Personal Theory on Dystonic Storms
What is a dystonic storm?
“Rarely, patients with dystonic symptoms develop increasingly frequent and intense episodes of severe generalized dystonia called status dystonicus. A single episode of this severe dystonia may be referred to as a “dystonic storm” or “dystonic attack.”
Although the exact numbers are not known, anecdotal accounts suggest that relatively mild to moderate dystonic storms are a fairly regular experience for some individuals with generalized dystonia, especially secondary dystonias.”
Quoted from: http://www.dystonia-foundation.org/pages/faq_symptoms/101.php
God has slowed me down again, with another dystonic storm. I don't know how long it will last or how bad it will get this time, but I trust Him with the details. I do in theory, although I have to continually remind myself that, sometimes as often as every minute, during the most intense spasms.
For those of you who have no idea what I am talking about, I have a movement disorder called dystonia. My particular type is classified as “generalized”, as it affects all of my body. See this page for more information: http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php. I developed this condition in 2005, was diagnosed in 2006, and had Deep Brain Stimulation surgery in 2007. In general, I enjoy a good amount of relief from the symptoms, through the combination of medication and neurostimulation. However, there are times when it flares up and I am reminded to count my blessings for the amount of symptom relief that I do have most of the time.
When I was diagnosed with Generalized Dystonia, the Movement Disorder Specialist informed me that, although dystonia is not caused by stress, it is exacerbated by it. That is a fancy way to say that stress can make the symptoms worse, and I have indeed seen this illustrated in my life over and over again, often through these “storms”.
Coming from Oklahoma, I have always loved to see a good thunderstorm develop over the plains. It is especially impressive when looking at a thunderstorm from miles away, as you can see a side view of the activity – the cloud movement, lightning, etc. Through these awesome storms, I have gained a tiny bit of understanding of the power of God. I am spared the full comprehension of God's power, however, as I would be crushed by that understanding, in my frail state of humanity.
The dystonic storms that God has placed in my life have many similarities to those thunderstorms that I loved to watch develop from miles away. Each bit of stress that I encounter adds a bit of moisture to my “environment”. Just like clouds, some stresses are bigger than others, but they all contribute in a developing storm. Although the development of a dystonic storm is much slower than an Oklahoma thunderstorm, the ensuing activity can be just as dramatic in its own way. When my "clouds" build up to the point where they are saturated with stress, the release is in the form of a dystonic storm. My body can be wracked with spasms from head to toe, with me perhaps being unable to get out of bed. That is the worst type of storm. In less severe storms, I am able to get up and around to a degree, but even walking can trigger severe chest spasms, which makes it difficult for me to catch my breath.
The duration of these episodes varies, also, lasting anywhere from 24 hours to two or three weeks. Although I struggle immensely during this time, I have come to recognize these struggles as a blessing from God, just as the rain from a thunderstorm is to the land. These are times of slowing down and reflecting on the goodness and faithfulness of God. The worst of thunderstorms can seem to wreak havoc on an area, yet it is one of the ways that God refreshes and rejuvenates the land. When I take the time to reflect during these storms in my own life, I see God at work in the same manner.
Bless the LORD, O my soul! O LORD my God, you are very great! You are clothed with splendor and majesty, covering yourself with light as with a garment, stretching out the heavens like a tent. He lays the beams of his chambers on the waters; he makes the clouds his chariot; he rides on the wings of the wind; he makes his messengers winds, his ministers a flaming fire. He set the earth on its foundations, so that it should never be moved. You covered it with the deep as with a garment; the waters stood above the mountains. At your rebuke they fled; at the sound of your thunder they took to flight. The mountains rose, the valleys sank down to the place that you appointed for them. You set a boundary that they may not pass, so that they might not again cover the earth.
(Psa 104:1-9)
“Rarely, patients with dystonic symptoms develop increasingly frequent and intense episodes of severe generalized dystonia called status dystonicus. A single episode of this severe dystonia may be referred to as a “dystonic storm” or “dystonic attack.”
Although the exact numbers are not known, anecdotal accounts suggest that relatively mild to moderate dystonic storms are a fairly regular experience for some individuals with generalized dystonia, especially secondary dystonias.”
Quoted from: http://www.dystonia-foundation.org/pages/faq_symptoms/101.php
God has slowed me down again, with another dystonic storm. I don't know how long it will last or how bad it will get this time, but I trust Him with the details. I do in theory, although I have to continually remind myself that, sometimes as often as every minute, during the most intense spasms.
For those of you who have no idea what I am talking about, I have a movement disorder called dystonia. My particular type is classified as “generalized”, as it affects all of my body. See this page for more information: http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php. I developed this condition in 2005, was diagnosed in 2006, and had Deep Brain Stimulation surgery in 2007. In general, I enjoy a good amount of relief from the symptoms, through the combination of medication and neurostimulation. However, there are times when it flares up and I am reminded to count my blessings for the amount of symptom relief that I do have most of the time.
When I was diagnosed with Generalized Dystonia, the Movement Disorder Specialist informed me that, although dystonia is not caused by stress, it is exacerbated by it. That is a fancy way to say that stress can make the symptoms worse, and I have indeed seen this illustrated in my life over and over again, often through these “storms”.
Coming from Oklahoma, I have always loved to see a good thunderstorm develop over the plains. It is especially impressive when looking at a thunderstorm from miles away, as you can see a side view of the activity – the cloud movement, lightning, etc. Through these awesome storms, I have gained a tiny bit of understanding of the power of God. I am spared the full comprehension of God's power, however, as I would be crushed by that understanding, in my frail state of humanity.
The dystonic storms that God has placed in my life have many similarities to those thunderstorms that I loved to watch develop from miles away. Each bit of stress that I encounter adds a bit of moisture to my “environment”. Just like clouds, some stresses are bigger than others, but they all contribute in a developing storm. Although the development of a dystonic storm is much slower than an Oklahoma thunderstorm, the ensuing activity can be just as dramatic in its own way. When my "clouds" build up to the point where they are saturated with stress, the release is in the form of a dystonic storm. My body can be wracked with spasms from head to toe, with me perhaps being unable to get out of bed. That is the worst type of storm. In less severe storms, I am able to get up and around to a degree, but even walking can trigger severe chest spasms, which makes it difficult for me to catch my breath.
The duration of these episodes varies, also, lasting anywhere from 24 hours to two or three weeks. Although I struggle immensely during this time, I have come to recognize these struggles as a blessing from God, just as the rain from a thunderstorm is to the land. These are times of slowing down and reflecting on the goodness and faithfulness of God. The worst of thunderstorms can seem to wreak havoc on an area, yet it is one of the ways that God refreshes and rejuvenates the land. When I take the time to reflect during these storms in my own life, I see God at work in the same manner.
Bless the LORD, O my soul! O LORD my God, you are very great! You are clothed with splendor and majesty, covering yourself with light as with a garment, stretching out the heavens like a tent. He lays the beams of his chambers on the waters; he makes the clouds his chariot; he rides on the wings of the wind; he makes his messengers winds, his ministers a flaming fire. He set the earth on its foundations, so that it should never be moved. You covered it with the deep as with a garment; the waters stood above the mountains. At your rebuke they fled; at the sound of your thunder they took to flight. The mountains rose, the valleys sank down to the place that you appointed for them. You set a boundary that they may not pass, so that they might not again cover the earth.
(Psa 104:1-9)
Saturday, July 4, 2009
Thursday, June 11, 2009
Dystonia in the News
This is indeed an amazing family. The parents have two children with generalized dystonia and they are making huge efforts to raise money for research into a possible cure for this illness. You can visit their website at: www.tylershope.org.
There are days when my own dystonia is well under control and you would not be able to see any effects from it. And then there are days (like most of this past week) when I tend to feel like dystonia "has me" rather than me "having dystonia". I have come to refer to it as "dis {a.k.a., this} Tonia", actually, as it seems like there is something or someone who wants to take over my body. I am thankful for the unique opportunities I have been given to share His light with others through my dystonia "connections", though.
Thursday, June 4, 2009
Another birthday!
We celebrated Vanya's 18th birthday this past weekend - where has the time gone?! Adopted at the age of 8, he is very much the American boy these days. Some of his favorite things are music, reading (especially G.A. Henty books), and working in the yard. We are encouraging the latter, especially!!Tuesday, May 19, 2009
Birthdays!!
Naomi (18)and Anna (17) celebrated their birthdays together again this year and even took some time out to have a photo made with dear ol' Mom!
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