So I come from a relatively healthy family. No one has chronic issues or any major surgeries. My family sometimes says, "I took one for the team!" Well it is one thing to deal with a health issue, it is another to deal with a rare health issue. Or how about 3 rare health issues? Well that would be me...I drew the short stick literally and figuratively. Or as my good friends Rob and Robyn say, "Only SaraJane!"
The main condition is Ehlers Danlos Syndrome which is a defect in the connective tissue. The second condition which often comes out of EDS is Chiari Malformation which is what led to my brain surgery. And now I have been told I have Dysautonomia. Dysautonomia is a malfunction of the Autonomic Nervous system (ANS). Many EDS patients have this for whatever reason and they really don't even know the cause of dysautonomia. And to top it off all 3 conditions are ones that most doctors have no clue about. At best they respond with, "Oh I remember that from Med School but couldn't tell you anything about it."
The Autonomic Nervous system (ANS) controls aspects of our body in a way we don't even think about like respiratory or heart rate. It does it "automatically." At least it is supposed to. But when it malfunctions it can cause many different types of problems.
To give you a better understanding here is a little Anatomy and physiology. The ANS is made up of 2 parts. The Parasympathetic Nervous system (PNS) and the Sympathetic Nervous system (SNS). The SNS is known for it's response to stress also known as the "Flight or fight" response. The PNS is known for the Rest and Relax part of the body.
The above graph gives you an idea of what each area effects. In Dysautonomia the Sympathetic system goes into overdrive and our body produces too much adrenaline. This response makes our body think it is in stress mode all the time and therefore shuts down all "unnecessary" functions so it can mount up a response. So when this happens you find yourself wired, having shaky hands, your digestion shuts off, it stimulates glucose, epinephrine and breathing while also making the heart work too hard and increasing your heart rate. One's body is not intended to stay this way indefinitely. In my case it is in this state too much of the time.
Finding out this diagnosis has made a lot of things make sense, especially over the past year. I have lost 20 + pounds and am now down to 98lbs. I am lucky to eat one meal a day now because my body doesn't tolerate food. My job produces enough stress to kick in the adrenaline so I am able to function at work but then I can't turn off the adrenaline so I can't sleep at night. By time my 3 12 1/2+ hour days are finished I literally can barely function. This is just the tip of the iceberg. Most people have no idea that I deal with this on a day to day basis. I don't "look sick!" But I feel exhausted and in chronic pain because my body can never rest. My body doesn't get the opportunity to rest and rebuild itself.
Being a nurse and understanding the way the body works, I recognize this can only last for a while before my body says enough is enough!. I often wonder, how long do I have to figure this out? Can I have a family like this? How do I even dream of getting married knowing I can't ask someone to "take" this on. It's not like I am wheelchair bound or can't function but I sometimes feel I can't function well. My biggest fear is being a burden. I have watched many people before me who have given up the fight and it doesn't end well. Giving up leads down a very slippery slope. Fighting is the best option I have in front of me and thought there are days I want to give up, I have a fighting spirit which does not allow me to give up. This is where my absolute dependence on God comes in. I honestly don't know how people go through tough things without having God to talk to, the support of a church body (as human and broken as it may be). My relationship with God and my church family, Calvary Chapel North Jersey, were an incredible support system for me through brain surgery. Even now as I battle this, they are often checking on me from 1500 miles away.
Some may look at it as a crutch. I would say it might look like a "crutch" but it takes more strength and faith to believe in God and trust him to get you through a difficult time than it does to just say, ah there is nothing out there. It is easier to just say there is nothing, there is no reason to fight and there is no one standing by my side daily while I hurt or can barely get out of bed from exhaustion. I however, find peace and strength in my pain and my exhaustion when I am talking with God and reading his word. I see in the Bible, not perfect people, but people who were adulterers, robbers, liars, broken, sick, wounded! God didn't say go figure this out and then come to me when you fix it. No He lifted them up to a place of honor and called them His children. He says he will never leave us or forsake us and that He is walking each step with us. It was the proud who turned there back on him and spat in his face that He said will have no place with him if they continue.
I don't write this post so that you will feel sympathy for me or say, "poor SJ." I don't write this post to shove God in your face if you don't have the same viewpoint. I write this post to hopefully explain how I get through a very difficult situation. I write this post to share where my strength comes from. My hope is that it won't be a place for me to gripe and gather sympathy but rather a place where people who want to understand my battle more can understand. A place where people who have a battle of there own can find encouragement for there own battle. I write this so that maybe there is someone out there, who is dealing with the same problem but have been told by doctors they are "crazy" because the doctor simply doesn't know what to do, who will find information and to see they are not alone in there battle.
Want to read more about any of these conditions?
Dysautonomia
http://www.dysautonomiainternational.org/page.php?ID=34
EDS
http://www.ednf.org/what-eds
http://www.ehlersdanlosnetwork.org/
Chiari Malformation
http://www.mayoclinic.org/diseases-conditions/chiari-malformation/basics/definition/con-20031115
http://www.chiariinstitute.com/chiari_malformation.html
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