a reintroduction

I don’t know what draws me back here.  My new “blog” is technically my tumblr and although I do occasionally write there… I don’t write like I have done here.  This has always felt like a diary to me whereas tumblr is like a fast paced spew out random thoughts thing.

There is an ungodly amount of bullshit that has happened in the time that I’ve been gone from this blog.  Including things I just don’t think I will ever be able to talk about.

Maybe in time I will write a little bit more about all the missing aspects of this blog but the biggest thing to mention is that my husband is now on the UNOS waiting list for a new liver.  Officially listed.  Officially waiting.  This is obviously huge and when the time comes a new organ will change our lives dramatically.

After some hospitalizations this summer, Ki’s GI finally agreed that it was transplant listing time.  If it wouldn’t have happened when it did I would have become irate with a man I otherwise liked very much.  But enough was enough truly… an alpha 1 liver does not get better, does not stabilize like some other forms of liver disease… which let us be honest here, the only type of liver disease that has the potential to really stabilize is that caused by alcoholism IF the alcoholic quits drinking.

We were then transferred to the ‘official’ liver clinic to a hepatologist that specializes in transplant patients only.  That made it all feel very real for certain.  And then they set up the appointments for transplant testing and that was all… so much a blur.

In my head I had this idea of what the transplant testing would be like.  I would gather around my family… have them come and show support.  The testing process would be serene and empowering for him, I would make it that way.

Instead he and his mom left the night before and I went down the next day.  I had a massive meltdown the afternoon I left and sat in the truck and hyperventilated in a parking lot for 20 minutes before I calmed my ass down.  The day of testing I arrived at the hospital separately and missed the psych eval with him because my phone had no service and I didn’t realize it until restarting it and getting a slew of messages from him… it was just me, him and his mom…. the social worker eval made me insanely nervous because he kept looking like he was going to pass out during it… everything was driving me crazy.  I was so upset, because I felt like… I should have made this better for you in some way.

And then the wait.  The fucking wait to find out if he would be listed.  There was nothing indicating he wouldn’t be but still… you kind of sit on pins and needles with every single ‘what if’ banging around inside of your skull.

The day he got the call he went outside to take it while I paced around nervously inside of the house.  It was only when I heard him begin to ask certain questions that I let myself believe that it would be real.  When he came inside and told me I just hugged him and cried.  Happy tears, anxious tears, hopeful tears, tears that have been held in for so long awaiting this hope.  Then came waiting for the insurance approval which took about 2 weeks before officially being put on the list.

We’ve been told the average wait time is 6 months.  We are very very lucky to live in an area that currently has a shorter wait time than other areas of the country.  His meld has still stayed pretty low all things considered though so I don’t know how all of it will play out, but at the time he was listed he was told he was third on the list for his blood type.

We’ve had low sodium drama again this fall but so far his doctor has managed to keep him out of the hospital by watching the situation very closely from home, which I am thankful for.  Hospital stays always suck the life out of us and I need as much life not sucked out of me as possible in order to prepare for this whole transplant thing.

The other big thing… was moving.

To be quite honest, to move again was devastating in a lot of ways.  I felt like I had “made it” so to speak when I had my house in the country.  That is what I always wanted again after all.  Even when we lived in tiny house, I was very happy there.  But then Ki insisted that we move down the road to the bigger house that our landlord was renting.

That house never really felt like home.  Granted, things went to hell almost immediately after moving in but it always felt off to me, like it had bad energy or something.  When we left the only thing I could honestly say I would miss was the privacy and the giant yard but nothing else I felt attached to.

It just got too expensive to stay there and so we waited rather patiently while still looking as a lady in my old hometown where I spent the first 10 years of life was renovating a house.  When I first came to look at it (Ki was in the hospital at the time) I thought there was no way in hell she would ever get it up to my standards, it need A LOT of work.  She didn’t seem to think we would be waiting for her to finish but I told her we would keep in touch.  And that we did… all the way up until we decided that we were going to take it.  October rolled around and the beginning of the month we moved.

So here I am, starting again in the small town that I lived for the first 10 years of my life… living on the street I spent many years visiting my aunt and playing with my cousins on.  I literally live a few houses down from my dad which feels crazy because I haven’t been so close to any family since becoming an adult.  I even live right next door to one of my cousins.

The house is lovely.  Being in town again is weird but it isn’t terrible because I have a nice big backyard and our land lady is very carefree about us being here… very laid back do what you want type of person.  We pay $200 less for rent… no deposit, no pet deposit.  I mean that alone was such a huge blessing.  This place is cheap for this town even, because there is a private college and most people who rent, rent to students at a rate of $200-300 a room so a 3 bedroom house, they almost always ask $900 a month here…because they can get with with the college students/roommate situation.

At any rate… that’s been life in a nutshell this year… Ki’s health things… moving.  And now 2015 is almost gone and I can only imagine what crazy shit 2016 has in store.

I just pray for my husband’s health.  I pray he gets transplanted soon so we can have keeping a new liver healthy being the health focus instead of keeping a dying liver stable.

My faith has never strayed there that everything will be okay.  That he will be okay.  Over 2 years ago I felt this strong feeling that it was going to work out.  I still believe that with all my soul.

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