We are starting our journey of visiting doctors once again, walking the walk. When every we take this path along our journey, it feels like we are walking on a tight rope over a raging gorge.
TLC is now able to visit a clinic just over a hundred miles away that is specific to Dysautonomia. As we do this, we are cutting ties with the neurologist at Children's. We hope that there are not any changes to her existing meds as they are all working just fine. However, we do want to have a doctor to consult with locally that knows and understands what is going on with her nervous system issues. We have heard from some that they will only be able to work with the Dysautonomia and will not be able to help with the Cold / Heat Urticaria and the Ehlers Danlos. However, this will be a big improvement over a doctor that does not know anything about any of them and can only try to treat the symptoms.
We have also made an appointment with the Geneticist to get more help with the Ehlers Danlos. TLC is now having problems with nearly every joint subluxating with every movement. Currently her neck, shoulders, wrists, fingers, vertebrae, hips, knees and ankles are all affected. She is still finding new tricks that she can do. She needs braces that will help prevent the movement of her joints from sliding around.
TLC now has a new symptom and we will be going to see an eye specialist today to rule out all the "bad" causes. It appears to be Retinal Migraines. A lot of people I have talked to have had trouble with them in both their eyes. TLC only has them in one eye right now. Because it is in only one eye, it is commonly triggered by some bad sources. We are praying that it is not and like so many others will eventually improve and go away.
Doctors are almost always difficult to work with; some get it, but most don't. Some already have the answers with total disregard for what is actually going on. Some are just plain crazy. Rare is the doctor that listens, that researches, that truly wants to research and make things better, even when the answers in their books don't work.
This is our journey and we are walking the walk, once again!
Friday, June 28, 2013
Enjoying the Simple Things Amidst the Chaos
We have had so much going on in the last few days. We just wanted to share with you another step along our journey of dealing with Dysautonomia, Cold Urticaria and Ehlers Danlos.
People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer. Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.
Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.
Recently, we were invited to a suite view of our local baseball team. We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect. As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in. Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive. We made it...through the whole evening of activity and enjoyed it all.
Last night we had the opportunity to go to the Capital Sounds Band's summer concert. We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud. The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave. On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music. Unfortunately, it smelled like a bathroom so we left at intermission. We enjoyed what we could and we were content as it was more than what we can usually participate in.
Later in the night there was an attempted home invasion. Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit. For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.
Borrowed from Wikipedia
"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."
My description:
Jerks are like giant hiccups. They can affect just the head, arm, leg or they can affect the whole body at once. TLC has had it affect the whole body. But yesterday, it was just in her neck. It is terrifying and can be very painful especially when the jerks are hard and sudden. For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.
We enjoy life and are content with the little we can be a part of. Check out the post previous to this one and you will see why. Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity. May you be blessed and enjoy the simple things in life.
People with Chronic Illnesses such as these or all don't get to go out much and participate in what all life has to offer. Despite this, we have found that life can be just as enjoyable at home, with family and enjoying what we can one thing/event at a time.
Don't get me wrong, we do make attempts to go out. When we do, we are always prepared to leave if the activity/event becomes overwhelming.
Recently, we were invited to a suite view of our local baseball team. We were able to sit inside and block out the noise when it was too loud outside from the concert prior to the game. And praise God, the weather was absolutely perfect. As the suite became too cold, and the concert transitioned into a game of America's favorite past-time, we were able to sit on the balcony and take it all in. Then when it came time for fireworks, we were able to go inside and avoid hearing all the loud booms which would surely have sent my daughter's nervous system into overdrive. We made it...through the whole evening of activity and enjoyed it all.
Last night we had the opportunity to go to the Capital Sounds Band's summer concert. We attempted to sit all the way in the back of the theater, behind the speakers, but despite really good sound control, it was just too loud. The myoclonic jerks started only mildly, but we had to go somewhere quieter or leave. On our way out, we found a sitting room just outside the women's restroom and sat in there to enjoy the music. Unfortunately, it smelled like a bathroom so we left at intermission. We enjoyed what we could and we were content as it was more than what we can usually participate in.
Later in the night there was an attempted home invasion. Fortunately, the men were scared off and there was no harm, other than us being wakened at 1:00 a.m. and the fear driving my daughter's nerves once again shot into orbit. For the second time in one day, she experienced what we so un-lovingly refer to as the Jerks; Myoclonic Jerks that is.
Borrowed from Wikipedia
"Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease (CJD), serotonin toxicity, some cases of Huntington's disease, some forms of epilepsy, and occasionally in intracranial hypotension. Some researchers indicate that jerks persistently may even cause early tremors."
My description:
Jerks are like giant hiccups. They can affect just the head, arm, leg or they can affect the whole body at once. TLC has had it affect the whole body. But yesterday, it was just in her neck. It is terrifying and can be very painful especially when the jerks are hard and sudden. For my daughter, they can be triggered by an overloaded sensory function such as intense fear, pain anywhere in her body, and for her being cold.
We enjoy life and are content with the little we can be a part of. Check out the post previous to this one and you will see why. Our God is the master healer and though healing may not occur this side of Glory, it will come and last for an eternity. May you be blessed and enjoy the simple things in life.
The Healing
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