RAW

This is going to be an honest and open and ugly post. I wont make anything look or seem pretty about what I am about to say. So if honesty and raw openness is not something you want to read today, I suggest you stop here and move on. 




You would think that over time the "new" Michael would just become the "normal" Michael to me, and that I would get used to his little ticks and problems and they wouldn't bother me so much anymore.

But that isn't the case. Instead, the longer he has them and the more I am around it - the more frustrating and agitating they become.

I don't look at him and see who he is now, I still look at him as the guy that I married 6 years ago. And that guy didn't do these things, look like this, act like this, behave like this. So it makes me angry. That is NOT him, he is NOT supposed to be doing that, saying that, acting like that, twitching like that. Just STOP already, and be my husband.

Its like a grater on my skin. Over the past three years every time he twitches or has a tick, or does one of his other many annoying symptoms of whatever is wrong with him... its like rubbing that grater on my skin. And each time it rubs it makes that wound a little more sore. So after three years and his symptoms increasing to not just once a month but now all day every day... I am raw and bleeding.

And I can't get away to heal a little. I can't leave the kids with him, I can't leave him for more than a day, and I dont have anyone here to help. So here I sit while he grates at me over and over and over and over.

And when I do try and do something for myself for a little self healing - it only makes it worse. Because he ruins it! Not intentionally, which I do realize, but it doesn't make it hurt less.
Example: I went last week to get a haircut and a pedicure. I hadn't had a pedicure since my sisters wedding in September 2012, and my hair hadn't been cut in a few months. I decided to bring Mike along so he could tend to the kids sitting there instead of me trying to pick up the dropped sippy cup, or fix the frozen iPad game, ect ect, while in the middle of my hair cut. I took a deep breath and took them all and planned to heal myself just a little that day. Instead, as soon as we got there - Mike starts doing his little angry and agitated huffing and puffing. I asked him "could you please just stay chill for me so I can just get my hair cut", and I just got a glare in return. Half way through my hair cut he stands up stomps around, huffing and puffing, and declares "I am hot, we need to go home now." I tell him "Mike just take your jacket off, we will go home when I am done." He replies "But I have a shirt on underneath, I will still be hot! Want me to just take all my clothes off here?!" And he flops himself back down on the chair and opens up his tablet (that he never leaves home without) and hides behind it still huffing and puffing in frustration and hopping around in his chair in agitation and nervousness - and in defiance doesn't event take his jacket off. He may as well have just cut me open and poured salt into the wound - because it would have felt the same physically as I felt emotionally right then. So instead of healing, I had salt poured into my open wounds. It hurt. And what made me even more upset than him not caring about letting me have a little time to heal - was that my kids are sitting there watching him behave like this, and they are learning that this is acceptable behavior.

I know it isn't fair of me to be angry at him. I know his intentions are not to make me miserable. And that is why I am still here. And I am still here because when I look at him I don't see this new Michael, I still see the guy I married - but that does make all his problems that much worse in my eyes.

I just hope and wish and pray and pray that when we get home and I have family around I will be able to have those free times for self healing, and that being around him wont be grating on raw wounds all the time anymore.

I know he won't get better and I have accepted that. Now we just need to get to a place where I can live with that.

Naming Your Demons

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.

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!