All of my children have Dysautonomia. My oldest has it the worst.
The way the body is put together is so complex it's amazing. You have two systems that work together-the sympathetic and the parasympathetic. They work together separately if that makes sense. When one system says go, the other says stop. That way, most people don't have a heart rate that will beat too fast or too slow.
These systems work under the autonomic system. In other words, the job they do is supposed to happen automatically. Now what do you think happens when one or both of them don't work the way they're supposed to? You got it, chaos can reign inside the body. The heart rate will beat too fast one minute (200 bpm resting in one case) or it will beat too slow (50 bpm in another case).
When people without Dysautonomia stand up, the blood pressure (bp) automatically adjusts itself. In people with Dysautonomia, it can drop so low they pass out. Or it can go high such as one recorded reading of (193/133).
People with Dysautonomia have problems with body temperature control, gastro problems, heat intolerance and the list goes on.
Certain types of Dysautonomia are fatal.
Those are just a few of the facts. Now let me tell you what I've witnessed in the lives of my children. Lips turning blue-one mom called it hypoxia, fainting, chest pain, dizziness, temporary loss of vision, wheelchair bound, bedridden. Struggle to find medical help. Mounting medical bills. Getting labeled. "All in her head" when she was only nine years old. She corrected the doctor very firmly "It is my heart that hurts, not my head."
Doctors who scoff (because when they don't know the answer, either it doesn't exist or the patient is mental), nurses who make fun. A ten year search for answers.
One doctor put her in the hospital because he was frustrated he couldn't just hand her a bottle of pills and POOF! she was cured. In the hospital with all the machines attached to her, he was then able to see with his own previous disbelieving self her heart rate swing too high, her blood pressure go too low, the fainting, the wacky way her body responded. That point was the catalyst.
From there we were directed to an autonomic specialist 13 hours from our home. Someone who understood the autonomic system and what can happen when it's not working correctly. He started daughter on the right treatment. Out of the wheelchair, no longer bedridden. Rejoicing.
Hearing 'chronic, no cure'. Deflating. Oh. Why God? Why? There has to be a reason! What is the purpose?
Watch her sleep. Is she breathing? Please God, don't take my baby. She's found on the floor. Heard nine year old scream, "She's dead!" Run upstairs, heart thundering.
Worsening condition. Violent tremors. Sprained wrists from the tremors. Sprained ankles when they begin in her legs. Are they related to medicines? If she stops one medicine will the tremors stop? (ohpleaseGod, ohpleaseGod, ohpleaseGod).
Not caused by medicine. Another girl with Dysautonomia has them too.
My heart aches. No.
Through it all, she jokes and laughs. When she falls down, she falls into the arms of her faith in an Almighty Father.
Sometimes...
I struggle.
Sometimes....
I am...
Angry at God. Angry at people. Angry at doctors. No one understands how heartbreaking it is to watch her suffer, to long to trade my health for hers.
Sometimes...
I am...
Walking the valley of weeping.
I'd like to wrap this post up with a pretty bow and tell you that I've come to terms with watching my kids suffer. That in my huge vat of faith (Ha!) I always find peace and serenity trusting that God has it all under control. But the truth is, I don't.
Sometimes...
My fear is a caged animal.
Sometimes...
It roams free and tries to devour me.
Saturday, November 14, 2009
Dysautonomia-A Mother's View
Posted by Magnolia at 10:14 AM
Labels: chronic illness, Dysautonomia
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6 comments:
Ah, Sonya. I'm in awe of your strength. (((hugs))
I love you, Mom.
My heart is breaking. I too am in awe. Your faith is amazing and your courage an inspiration.
Cyberhugs coming your way!
One of these days, I truly hope someone comes up with a bio bed like they had in Star Trek. At least then, the guesses will be at least SWAGs. Maybe it will stop most of the sneering and condescention, too.
Miracles DO happen. :D
Again, cyberhugs!
My wife is battling her second bout with cancer. The first time...I prayed for healing and she had her entire colon removed. This time I also prayed for healing and she has had a radical bilateral masectomy. She has had more body parts removed than I have fingers on both hands.
I have often wished I could switch places with my dear wife....I can only imagine what it must be like with children.
Although "we" are christians....we are still human beings. The Lord understands your gamut of emotions. Whether "we" see it or not.....He is still sovereign.....and someday it will make sense.
You and your family will be in "our" prayers!!
> Hebrews 13.14 ~ For here we have no lasting city, but we seek the city that
> is to come.
> 2 Corinthians 4.17-18 ~ For this light momentary affliction is preparing for
> us an eternal weight of glory beyond all comparison, as we look not to the
> things that are seen but to the things that are unseen. For the things that
> are seen are transient, but the things that are unseen are eternal.
> Colossians 3.1-3 ~ If then you have been raised with Christ, seek the things
> that are above, where Christ is, seated at the right hand of God. Set your
> minds on things that are above, not on things that are on earth. For you
> have died, and your life is hidden with Christ in God.
> 2 Corinthians 12.10 ~ For the sake of Christ, then, I am content with
> weaknesses, insults, hardships, persecutions, and calamities. For when I am
> weak, then I am strong.
>
> The common thread through each of these passages is this: we hope in the
> gospel, not in our circumstances. We hope in Jesus, not people. The end of
> our hope is not that our suffering is going away in this life necessarily
> (although it might); the end of our hope is being with Jesus in heaven. We
> ought to rejoice even in the suffering that God brings into our lives
> because we know that it will all work for our benefit by bringing us closer
> to Him!
>
> Both pain and pleasure are meant to point us to the same reality; namely,
> that Jesus Christ is infinitely beautiful and so much more than enough for
> our every need. Living for Him, even suffering for Him, is worth every
> moment of affliction! Why? Because Jesus shows you such beauty in pain,
> because He is there and He is carrying us through. C.S. Lewis said, “God
> whispers in our pleasure and screams in our pain.” That is so true.
>
> The sovereignty of God gives my wife's second battle with cancer a purpose.
> If God were not sovereign, disability and suffering would be pointless.
> So we cling to the hope that the God who spoke the universe into existence
> spoke these “slight, momentary afflictions” into "our" life for our good.
> Disability and suffering and me and my wife exist for the glory of God. We
> pray that in times of suffering and times of pleasure, our lives would
> magnify the One who “died for all, that those who live might no longer live
> for themselves but for him who for their sake died and was raised (2
> Corinthians 5:15).”
Just happened upon your blog entry while trying to find a citation for something I was talking about online. ... I have dysauto as well and it really struck me because my mother has expressed similar sentiments at times; every one of us with dysautonomia that has a parent to fight with us for a diagnosis and for better treatment is so very fortunate. :-D
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