I got a call at 7 am this morning from one of the neurologists at WBAMC. She was able to fight the system and get the Huntington's Disease test approved for TODAY ONLY! She put a call into Quest Medical, who owns Tricare, and got the approval from them. The test is an approved and covered test by Quest, its Tricare themselves who have elected to not cover that test. Well boo on you Tricare, we went over your heads and straight to your boss.
So Mike is on his way right now to get his blood drawn before 1:30 when Quest does their pickup at our hospital.
This is one of those things that has you split in half, 50% of you is praying that the test is negative and the other 50% of you is praying it is positive.
The positives of it being negative: There is the obvious reason that it means he isn't dying of Huntington's Disease. And it means that our children will not inherit this genetic disease from him.
The positives of it being positive: We will finally know what it is that is slowly deteriorating him and we will better know how to treat him moving forward. And we will immediately know what our children are struggling with if they start to show symptoms as well - no going through this unknown like we have had to with Michael. Also, being able to just put a name on your demons makes it easier to process and live with. You can tell people "he has Huntington's Disease", instead of "I don't really know what's wrong with him.... sorry". And, he could still be dying from some other degenerative disease - so why not at least know the name of the one that is killing him?
So there is a positive to either outcome, and a negative to either outcome. When we have the final answer, the biggest thing will be how we choose to view and live with the outcome. We can make either work, because that's what love and family does. And either answer will not break us and will not make us fall and fail - for His eye is on even the sparrow, so I know He's watching me.
Tuesday, November 19, 2013
Monday, November 18, 2013
Social life? HA!
Being married to someone with a chronic disease changes your life. There are the obvious changes, like having to care for them as well as your children... but then there are some changes that you didn't even realize would ever come or didn't at first recognize as part of the disease.
The hardest change for me has been my social life. Not just because you are always busy at doctor appointments and caring for the family all on your own... but you find yourself avoiding joining in with new groups of friends or doing social activities. With Mike, his behavior in public can be very embarrassing and sometimes inappropriate. Until recently we didn't have a diagnosis - so I didn't have any explanation to give as to why I had this jerk along with me. I dropped out of MOPS and bible studies, because I couldn't really fully engage in relationships without them meeting and seeing him and wondering what on earth was wrong with us. I would like to say that I wasn't embarrassed of him - but I was. Not because he was sick, but because I couldn't give them an explanation of what was wrong.
He also no longer has friends at work, so we aren't being invited to work socials or to eat out with other couples. This was a huge change and a devastating one for me. Prior to his disease taking over, he was very popular and well loved by his coworkers. We were out every weekend with other couples and attending every work social event. People loved us! Now, we know nobody. We don't go anywhere or do anything out side of the house (without a major melt down and a humiliating public display).
Now that we (kinda) have a diagnosis for his disease, I am feeling more confident about rejoining some groups like MOPS or a bible study. I now can tell them "my husband has a degenerative neurological disorder, much like Alzheimers, that makes his behavior very strange". I'm not embarrassed of his behavior anymore, because I know why he behaves like that and I can explain to others why he does. So now my only excuse for not joining those groups is having no free time - seriously, I have zero down time right now! Living with someone who has a chronic disease is exhausting! And two kids under the age of 5 sure is exhausting as well.
But there is a light at the end of this tunnel - the medical discharge process is underway again! Once completed we will be moving back home to PA to be near my family. I will have friends and family to help us and support us, and baby sit the kids AND the husband so I can actually have a few free minutes to myself! Hallelujah! Lets get this thing done!
The hardest change for me has been my social life. Not just because you are always busy at doctor appointments and caring for the family all on your own... but you find yourself avoiding joining in with new groups of friends or doing social activities. With Mike, his behavior in public can be very embarrassing and sometimes inappropriate. Until recently we didn't have a diagnosis - so I didn't have any explanation to give as to why I had this jerk along with me. I dropped out of MOPS and bible studies, because I couldn't really fully engage in relationships without them meeting and seeing him and wondering what on earth was wrong with us. I would like to say that I wasn't embarrassed of him - but I was. Not because he was sick, but because I couldn't give them an explanation of what was wrong.
He also no longer has friends at work, so we aren't being invited to work socials or to eat out with other couples. This was a huge change and a devastating one for me. Prior to his disease taking over, he was very popular and well loved by his coworkers. We were out every weekend with other couples and attending every work social event. People loved us! Now, we know nobody. We don't go anywhere or do anything out side of the house (without a major melt down and a humiliating public display).
Now that we (kinda) have a diagnosis for his disease, I am feeling more confident about rejoining some groups like MOPS or a bible study. I now can tell them "my husband has a degenerative neurological disorder, much like Alzheimers, that makes his behavior very strange". I'm not embarrassed of his behavior anymore, because I know why he behaves like that and I can explain to others why he does. So now my only excuse for not joining those groups is having no free time - seriously, I have zero down time right now! Living with someone who has a chronic disease is exhausting! And two kids under the age of 5 sure is exhausting as well.
But there is a light at the end of this tunnel - the medical discharge process is underway again! Once completed we will be moving back home to PA to be near my family. I will have friends and family to help us and support us, and baby sit the kids AND the husband so I can actually have a few free minutes to myself! Hallelujah! Lets get this thing done!
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