2015 fin.

I had wanted to finish of the story of the transplant… well it’s ongoing but finish it up until now, I’ve just been too busy to write.

Ki got discharged from the hospital on the 23rd. It was literally our Christmas miracle (well, one of them lol) because previously that morning they had told us he wouldn’t be going home. The post op swelling was causing a lot of issues, mostly pain and he wasn’t really pushing himself through it to do what he needed to do. I’m not blaming him, I can’t even imagine how great the pain is and was, but it caused a major setback initially. But when he realized that he was going to end up spending Christmas in the hospital and there was a possibly they would medically clear him before physical therapy clearing him and he could end up in an inpatient rehab center that motivated him to push through the pain and physical therapy cleared him that day. It turns out he could do the things they wanted him to do really well, he was just scared more than anything.

Going home was a bit scary but we are kind of settling into some sort of routine although I don’t think it will be a new normal anytime soon yet, there’s still a lot of unexpected things to be on the look out for but I am oh so glad that he is out of the hospital because he started massively improving once he was home. I’m always afraid of him ending up back there before he’s really turned a major corner and it setting him back further so I really pray that that doesn’t happen.

Overall we’ve just been massively blessed. I can’t believe that this all happened before the end of the year and we will go into 2016 healing instead of getting sicker… moving forward instead of waiting. We really truly thought there was no chance of a transplant before 2016 and yet here we are. I still can’t believe it’s real sometimes.

This year seems like a whole blur of randomness but I am going to try to fill out my little end of the year review questions I normally post on this day.

What did you do in 2015 that you’d never done before?

Painted a room in the house.  Finally attained the blue and purple bedroom I have wanted all of my life.  Went through transplant evaluation with my husband.  Went through a liver transplant with my husband.  Went to therapy with my husband.  Let go of the idea that I need to be perfectly put together at all times before interacting with other human beings… I am okay with no makeup and undone hair.  Binged watched a complete tv series (it was Breaking Bad.. omg if you haven’t watched it, you must!).  Lost a cat that I had longer than 10 years.  Made a dream catcher.

Did you keep your new years’ resolutions, and will you make more for next year?

I don’t think I had any.  The only thing I want this year is for HEALING to take place.  I want my husband to heal. I want to heal.  I want our lives to heal.

Did anyone close to you give birth?

Nope.

Did anyone close to you die?

My aunt Kim passed away after a very long battle with breast cancer.  I am sad she is gone but there is comfort in knowing that she is no longer suffering, because she suffered greatly for a very long time.  It was a testament to her spirit though to keep going.

And I sadly found out this year that last year the father of a childhood/teenage best friend passed away.  I have a lot of memories of him and had I known he had passed I would have been there to pay my respects.  It fucks with me heavy that I’ll never see him again.   Let it remind you that you never know when the last time you’re going to see somebody is.

What would you like to have in 2014 that you lacked in 2013?

Health for myself and everyone around me.  It is time that we all heal together.  I truly believe we should get to bask in some sunshine after such a storm that the past few years have been.

What date(s) from 2013 will remain etched upon your memory, and why?

  • The day we knew our second IUI failed.  It was a clusterfuck of “hey your IUI failed, your have bronchitis, and a heart murmur.  Fabulous day let me tell you.
  • The day we went to Indy for Ki’s transplant evaluation.  Everything about our future hinged on tests from that day.
  • The day that his case was presented to the transplant board and them calling us to tell us that he had been accepted and listed. So much hope finally came sprawling back into life.
  • The last ER visit/hospital stay pre-transplant.  It was the moment where I knew I was losing my husband to the disease and I was so terrified and honestly was so afraid of how much longer we could do this.  And then it was like the universe heard my cries because
  • December 11th they called us at around 6:30-7pm and told us there was a liver and if would be interested in coming in as a back up and then
  • December 12th at 3am they took him back for surgery.
  • December 23rd… he got to come home from the hospital.
  • December 25th… the best gift I could have… having him home with me for the holidays.
  • December 31st/January 1st… leaving 2015 in the dust by his side.

What was your biggest achievement of the year?

All my achievements this year has been a lot of work internally.  I was really broken down this year.  I had to do a lot of soul searching to pull myself out of a very dark place.  It was a lot of mental health stuff.  I truly advocate that if people need help, ask for help!  But I kept running into the terrible experience of asking for help and ending up worse than I was.  Deep down inside, I know what I need to do… I know what is best for me and I felt like I really had to stop running from that and work on myself.

  • I accepted my OCD.  I was going to make a post about this at some point, but yes, my whole life I have suffered from OCD  (almost literally, it began when I was 4 years old).  I know it’s hell and I want to punch people who think OCD is just liking a clean house.  It can be a personal prison you can’t escape from at times but to stop running from it and actually confront it was a huge achievement for me this year.
  • I confronted my negative thought cycles.  That’s still an ongoing battle but when you have been feeding yourself horrible negative thoughts for a good part of your life, it’s a very hard cycle to just break over night.  But it was just like wow… I tell myself such awful things and expect to feel better?? What would happen if I spent that much time feeding myself beautiful positive thoughts?  I intend to fully find out.
  • I’m beginning to understand that I can’t sacrifice myself for other people.  I deserve to love me and there is nothing wrong with that.  I think a lot of what is wrong with this world is that people are made to feel that loving themselves and having self worth is wrong so they are constantly looking for fulfillment elsewhere.
  • I can’t keep ignoring my spiritual side.  It needs to be incorporated into my life.

What was your biggest failure?

I really let my mental health go there for a while this year.  Was in a really bad spot once again.  It didn’t have to get that bad, but as we all know with mental illness… sometimes you don’t get a say.  I don’t think of it being a failure in and of itself struggling with it, but there many things I did and didn’t do that was me being lazy and not helping myself… and it didn’t have to get the point that it did.  I just think I kind of failed myself for not thinking that I was important enough to get better there for a while.

Did you suffer illness or injury?

Heart murmur which thankfully turned to be benign.  A wicked ulcer that concluded with some of the worst pain of my life. And then of course the brain going awry.

What was the best thing you bought?

  • Batman Arkham Knight for PS4… the last Rocksteady Batman game *sniffle* but I’m only just now starting on all the DLC so at least I still have that to look forward to.
  • My blue hoodie that I am addicted to wearing
  • These awesome super soft leggings that look like skinny jeans that are the most comfortable things I have ever worn in my life and I need 3094283 more pairs even if they all look alike so that I have a pair for all eternity.

Whose behavior merited celebration?

My brother is really a pretty awesome dude.  He was so supportive during Ki’s transplant and hospital stay.  It just warmed my heart so immensely that when Ki was still unconscious after the transplant my brother was there talking to him.

Whose behavior made you appalled and depressed?

I’m having MIL issues as we speak y’all.  I don’t wanna speak on it right now but she has not dealt with our current reality very well.

Oh and my sister when I found out she was a fan of the 50 Shades of Grey lineup lmao

Where did most of your money go?

We don’t really have any money right now lbci (laughing but crying inside lol)  Moving houses, medical and travel, and the post transplant stuff along with bills and everything else has had us drained.

But you know, I really learned that no state is permanent.  Yes sure you can do things to ensure that you may be better off for a longer period of time, but sometimes life happens.  And life happened to us.  We have been flat broke, we have been well off, and we have been flat broke again.  I fully believe that we will be well off again and this time have the foresight to understand that you never know what could happen in the future so plan better for it.

What did you get really, really, really excited about?

It happened so fast that I didn’t really get much of a chance to even be excited but obviously the transplant.  Right now I’m really really excited about the hope of a life where disease isn’t an everyday factor.

What song(s) will always remind you of 2015?

  • Alessia Cara- Here
  • J. Cole- Love Yourz
  • J. Cole- No Role Modelz
  • too much fucking Drake
  • Nicki Minaj & Beyonce- Feeling Myself
  • Big Sean, Drake, & Kanye- Blessings

Compared to this time last year, are you:
i. Happier or sadder?

So much happier. Amazing what can change in life in just a few weeks.

iii. richer or poorer?

So much poorer financially but so much richer in other ways.

What do you wish you’d done more of?

Staying in moment.

What do you wish you’d done less of?

Worrying.  Indulging in hopelessness.

How will you be spending Christmas?

I spent Christmas at home with my love and it was the best Christmas ever in all existence.

What was your favorite TV program?

  • Breaking Bad… better late than never!
  • Empire
  • Gotham (but then Gotham went off the deep end when it came back this fall and I’m having trouble trying to keep giving it second, third, and fourth chances)

What was the best book you read?

  • War and Empire: The American Way of Life by Paul L. Atwood
  • Jesus Against Christianity: Reclaiming the Missing Jesus by Jack Nelson-Pallmeyer
  • Hyperbole and a Half: Unfortunate Situations, flawed coping mechanisms, mayhem, and other things that happened by Allie Brosh

What was your greatest musical discovery?

Creating a women in hiphop station in my digital music apps.

What did you want and get?

Guess? =D

What was your favorite film of this year?

The only film we saw in the theater this year was Straight Outta Compton. It was decent… I think only hiphop fans can truly appreciate it though.

What did you do on your birthday, and how old were you?

I…. seriously have no memory of my birthday?

How would you describe your personal fashion concept in 2015?

I will wear this hoodie every day of my fucking life and no one can stop me.

What kept you sane?

Hahaha I wasn’t sane for a good chunk of the year.  Once I regained some of it I kept it on track by rereading Claire Weeke’s Hope and Help For Your Nerves, the parts I needed over and over.  Journaling. And honestly just letting it out.  I realized it was time to stop lying to myself and everybody else.

Which celebrity/public figure did you fancy the most?

My Breaking Bad binge gave me an Aaron Paul crush lol

What political issue stirred you the most?

Oh god.  Isn’t there just too much fuckery going on to even pick one?  I really can’t.  Shit’s crazy out there.  We have got to do better y’all.  As members of the human species we have got to start doing better for all our brothers and sisters the world over.

Who did you miss?

Mango.  God I miss him so much.  He was always the constant in my life.  I don’t know if I’ll ever not miss him.

Who was the best new person you met?

Can I just lump all the people who have helped get us to and through this liver transplant stuff… they’ve been phenomenal.  My husband has such a wonderful team behind him.

Tell us a valuable life lesson you learned in 2015:

Nothing is permanent.  Life is cycle of haves and have nots.  Illness and wellness.  Loss and gain.  And in some weird way, it’s almost comforting.

xmas came early. part one.

I actually for once have a super excellent reason as to why I haven’t kept up with the holidailies tradition this year.

Ki got transplanted. He got a liver. A totally wonderful unexpected liver.

Last Friday I got up super early. I was trying to make myself feel better.. away from the pain issues I had been having (my back thinks it’s 70 years old) and my general depressiony vibe I was feeling. So I got up, did some yoga, took a shower, got dressed and decided to go into the city because it was a super nice day and I just needed to unwind with some me time. So I did that and I was gone until about 6pm that evening.

When I got home, I got out of the truck, went to the garage to turn on the Christmas lights, gathered up the groceries and headed in. When I got inside, Ki was on the phone and he had a very anxious look on his face. My stomach immediately dropped and I felt that burning feeling surge through my blood which always happens whenever my adrenal glands decide to dump a shitload of stress hormones into my body at once. I tried to be patient with whatever was going on but after a few minutes I’m just like okay I’m gonna throw up what is going on… So he puts the phone on speaker and I hear someone say “so do you want to accept it?” All I could think is maybe liver?? But I’m not entirely sure what is going on still and I just look at him and mouth the word yes because he really just looked overwhelmed. Then I heard someone say “Lisa will be so happy!” and asking us how far away we were and said they would expect us in about 3 to give us plenty of time and to drive safely.

He hung up and I’m like what is that, do they have a liver for you?? He tells me that he has been called in as a back up, there is already someone there waiting but they feel like the liver may not be a match for them. We had previously been told that we probably wouldn’t be called in as a backup so the very fact that this has happened is giving me good vibes.

My brain goes kinda blank… we don’t have bags packed or anything because his MELD just hit 15 a couple weeks back, this is the first time it has been in a range where we were told that he would probably even be considered for a liver, but after checking OPTN religiously and seeing how many people are ahead of his score, we really did not believe that he would be transplanted soon. We were thinking maybe after the new year, when they updated the scores to include sodium, but definitely not before then. Ha. Shows how much we knew.

He had a minor moment of hyperventilation in the kitchen but I told him to calm down, we had this. Hurry, pack a bag! I took Nacho over to my dad’s house and told him that we had been called in as a back up. Went back home, proceeded to pack a bag, get the rest of the animals stocked up on food and water and we eventually headed out. I put my “healing meditation music” on the stereo and really… the drive wasn’t very stressful. Like I didn’t really feel anxious much at all. We had a very calm peaceful drive, made it there in plenty of time, ever stopped on the way for gas. I think both of us thought this was just a practice run and at least after this, we would know what to expect.

We arrived at the hospital and checked in. They took us up to outpatient transplant which is a room full of beds that are divided by curtains. Across the room from us was a gaunt looking man with yellowed skin. I immediately knew that he was the first in line, and we were his back up. He looked much sicker than Ki and it was kind of awkward the whole set up, he was there, we were across the room, we were in full view of each other and it’s just like hey.. I’m sort of your competition. Hopefully in the future they change this set up for people.

So at first we just waited a bit. And then they came and did blood work. Then more waiting. Then it started to happen, we started hearing little whispers from the nurses that they were leaning towards giving Ki the liver. But it was still to early to really get our hopes up and him? He wasn’t going to get his hopes up at all… he had totally just kind of shut down and distanced himself from what was happening I think. I took a little of dramamine to quell my nausea and tried to sleep a little bit. I started hearing the nurses come back in and one came in and had him change into a gown. This is when my brain perked up and I was kind of like oh shit,this is probably going to happen, otherwise why would they have him getting into a gown while the other guy was still over there. I woke up and told him, they must be giving it to you and he was in complete denial that it was actually his time. I’m like look! The guy across the hall isn’t getting into a gown or anything and still he didn’t quite believe it.

It was shortly after that the the nurse came back and confirmed this for us. It was Ki’s liver and it was good to go. They were taking him back to surgery NOW, the liver donor was local, the liver would be arriving shortly. It all happened so fast that neither of us had much time to process it. It was very emotional for both of us. At this point they also went and told the other man that this particular liver was not for him. That was awkward when you hear that conversation take place. I mean they see us over there prepping and crying tears of joy and anticipation and anxiety and everything else and they are told they have to wait longer. It sucked to hear the disappointment and confusion in their voices. What it apparently came down to was 1) a size issue. This was the main reason the liver was better suited for Ki. The second was an antibody issue… Ki apparently had almost no antibodies that were incompatiable with the donor liver. This doesn’t mean that his body won’t still try to reject it if he were to be without immunosuppressants, but it does mean it is just a better match.

We had almost no time to process what was going on. They were like we are going to surgery now and brought a wheel chair. He was obviously crying at this point and I was too but I also felt very at peace too. I thought I would be an insane mess when all this happened but I just felt very accepting. Not sure if the same can be said for him. When he realized all this was really happening I think he realized how unprepared he was for the reality of it and now here it was, he had to face it head on.

I remember him telling me that he just wanted to go home. I tell him noooo you don’t really mean that. Besides, no matter when it happens it doesn’t mean you will ever truly be ready for it. I understand the sentiment though, you realize that you are about to undergo something that will once again competely change your life once again.

I told him that I felt like he dad was there with him. Well, I phrased it as “I bet your dad is here with you right now” because I didn’t want to sound too creepy, but I felt it so strongly, that his dad was with him. That’s what I was going to say “not to sound creepy but just so you know your dad is here with you right now” but I didn’t want to freak him out even more.

The wheelchair ride to the OR doors wasn’t long enough. Down and elevator and that was about it, the nurse told us to we had to part ways. He was crying, I was crying… I don’t remember much of what I said now, but I remember telling me him that he had this and that everything was going to be okay and I watched as they wheeled him into the OR area. I had to just kind of disconnect myself a little bit or I would have lost my shit.

Poor guy later told me that he broke down walking to the OR table, but within the hour they had him completely under and hooked up to all the lines and machines. Another hour or so passed and the nurse called me and told me they had begun the incision. Another hour and the old liver was out, the new would be going in… another hour and they liver was in with partial blood flow, they just had to finish hooking up and then before I knew it they were telling me he was done. The surgery was extremely quick for an organ transplant, just about 4 hours!!!

My mom, her husband, and my brother joined me in the waiting room about an hour before the surgery was completed. Around 9am or so one of the tranplant team came in and told me that surgery had gone well, just the matter of some low blood pressure and low sodium but he had come through just fine and everything looked great. We were invited to go upstairs and wait on the transplant floor while he was in recovery and when they moved him to a room they would come and get us.

And that is part one of this long initial story… I am currently sitting in the hospital room with him as he recovers and am totally pooped so I will continue this story tomorrow.

impending doctor marathon.

I can’t seem to find the energy to write, I just keep staring at a blank screen mostly wishing I could sleep at night.  I feel like Christmas is creeping up much too fast and I’m not getting to enjoy the season.  I’m even still decorating.  Every since we have moved it feels like the days fly by and I’m not sure why.  Time moves faster 50 minutes south I guess.

We finally got word on Ki’s blood tests from the Monday after his last hospital stay.  The cortisone seems to be working very well and is upping and maintaining his sodium levels.  This is both good and bad.  Good for obvious reasons but the bittersweetness comes from the fact that when the sodium meld scores kick in in January he may not get as many additional points as he would have previously.  It is my understanding that he should still get some as he’s still under the normal range but I’m not entirely sure how it all works.  We are going to have to ask the transplant hepatologist. I’m just ready for him to get offered a liver.  The sodium being added to the meld gave me some hope of an end in sight… Will have to wait and see what the dr has to say about it all.

Speaking of that, next Monday.  I hate driving down there but it is a much easier drive now that we do live 50 minutes further south.  It will be a long day though… Both transplant hepatologist and TIPS check.  So blood work, dr office, ultrasound, dr office.  It is very wearing emotionally more than anything.  I hope we will both have enough energy to do something afterwards to make it feel like we weren’t there just for medical stuff… There’s a florist next to trader joes that decorated for Christmas I hope we can stop by.  And maybe if we’re both still in a good mood I’ll drive alllll the way to the other end of 86th street and go to the Asian and Indian grocery.  

small miracles.

Last year was the first time I missed Holidailies since I started doing it back in 2008.  I guess it was because last December was so stressful.  This month marks the 1 yr anniversary of Ki having his TIPS procedure done, or as he calls it, his robot part (because it is made of metal mesh).  It was a very scary time with a lot of unknowns.

Well things haven’t changed much.  Life is still a scary thing with a lot of unknowns but at least there’s a lot more hope.  Actually being on the transplant list, as surreal as it is, makes for a lot of hope.  It allows for a little room to breathe and a belief that just maybe there is an end to this journey through hell and a happy ending.  By no means will any of it be easy but I am so ready to get off this ride that is basically a descent into darkness and hop on the next which will hopefully take us back into the light.

And we might just get there a whole lot sooner.  The other day UNOS announced that the new MELD score calculator that adds sodium to the overall score will go into affect on January 1st, 2016 and our transplant nurse coordinator confirmed this for us.  This is huge for us.  I have now officially lost count how many times Ki has been hospitalized for chronic low sodium.  Despite every thing they have done to attempt to raise it, it stays low and is a constant battle to keep him out of the hospital.  His MELD could raise as much as 10 points when this goes into action and it might even be enough to push him to or near the top of the list.  I keep having a strong feeling that his transplant will come between Jan-March of next year.

So that’s our little Christmas miracle I suppose… for that to finally be happening.  I know it was debated for some years and I feared it would never happen, but yes… finally.

**

Tonight we went and got a tree finally… a beautiful real fir tree (no more pines here bah).  But… we got it home and found out our tree stand from last year is broken so it is out chilling on my porch and I swear to God if anybody steals my Christmas tree there will be hell to pay.  I’m trying to get lights up outside as well… Christmas is just starting to sneak up on me too fast this year!

Living across the street from Dad is certainly an adventure at times.  Tonight he sent me a text that we could come over and watch Rudolph the Red Nosed Reindeer with him if he wanted… now how are you going to say to no to your 59 year old father when he wants somebody to watch Rudolph with him lol

sleeeeeeeepy

Christmas came and went too fast.  I’m sad that the day is over.  It seems I’m never quite in the spirit as the day approaches, but Christmas itself always holds a certain level of magic.

We did something different this year and waited until later in the evening to open gifts.  It was kind of fun to wait, open gifts, and then eat Christmas dinner… it seemingly prolonged the spirit of the day a bit.

I was spoiled this year.  Before Christmas had even got close I asked him to stop buying me things… it was making me feel guilty,  like I don’t deserve for you to buy me all this stuff.  He kept saying I deserved it for all that I did.   I’m still not comfortable with the fact that he spent so much on me,  I always think of more practical uses for the money but he insisted despite my protest.  It may be his way to show gratitude but I don’t need stuff to know that I am appreciated.

I tried not to get myself revved up over thoughts of what Christmas may be like next year, but much like Thanksgiving, they would creep in randomly.  I tried to push them out just as fast as they crept in.

January approaching revs up my anxiety.   Tis now the season for doctor appointments.  My mind is focused on one thing only, him getting on the transplant list asap.  Of course I don’t yet know if the university hospital will require his MELD score to be higher to start transplant proceedings.  That’s the sucky thing about livers.. they can cause you all kinds of issues and yet the score the use for helping determine transplant need can remain lower than you would expect it would be considering the issues said liver is causing.  The GI docs have talked about a shunt during the wait for a transplant to help alleviate some of these issues and I would be lying if I said the thought didn’t scare the shit out of me as much as everything else.  The chance that it can lead to episodes of high ammonia in the bloodstream and the accompanying confusion etc that comes with that really really really scares me.  I know there’s medicines for it.  I know there’s things you can do to help prevent it.  All that. But it is scary and not something else I want him to have to experience or me either in the wait for a liver.  I have heard that anywhere from 1/4 to 1/3 of people undergoing the procedure may experience it.  And of course there are other risks as well I have learned.  I finally forced myself to read about it more the other night because I had absolutely refused since it was first mentioned to acknowledge it thinking “oh…. well maybe he won’t have to have it done” which was my form on absolute denial.  So I decided to read about it the other night and although it does have some scary things that can happen with it, it also has a lot of benefits when it works as it should.  It makes me feel less scared but not completely less scared…so yeah.

My MIL arrived to spend another week with us starting yesterday.  She was just here at Thanksgiving so we did not have a long wait between visits this time.  I hope I don’t find myself slipping into a bit of a depression when she leaves, such as I did after Thanksgiving.  I don’t get why, but somehow it is easier when she is here… having another energy in the house.  It doesn’t make any sense because there isn’t any thing in particular that she does when she is here that makes things any different.  I guess it is just having another person for support.

Sundays have been my “I could sleep all day” days lately.  Slept in today, barely did much all day, and still exhausted.  I’ve been fantasizing about bed since about 2 hours after I woke up heh.

I also had the realization the other day that I am supposed to go back to some form of “real life” soon and ugggh… the “don’t wannas” are strong.  I know I have to go back to carving out some kind of life for myself but I don’t even know where to begin again.

i’ve been writing this post for like 3 days

Our 7″ of snow is completely gone after we got like 3″ of rain.  And a 60 degree day.  Oy.  Once again no white Christmas for us.  I don’t think it unreasonable to think that maybe one year we will get one considering I live in a place that does experience winter.  Somehow it always just misses us.

We had Christmas at my sister’s house Saturday evening.  I made baklava (which turned out to be my best baklava ever), truffles (30 in total.  5 rolled in peppermint chips, 5 rolled in matcha, 5 rolled in sprinkles, 5 rolled in cocoa powder, and 5 rolled in chili cocoa powder), “pink stuff” (per dad’s request), chocolate dipped potato chips (don’t you judge me internet actually the internet should love this, nevermind), wild rice with chicken (mostly because Ki needed a lower sodium main dish than ham) and I also brought along some yummy rolls and goodies from the Amish bakery.

So we did our yearly tradition of dinner and presents and visiting.

This year I got my sister a hard bound 5 year journal meant for writing down a memory a day about the boys, a Bath and Body Works 3 wick candle, a Bath & Body Works body spray, a glittery little snowman… and maybe another little thing or two, I honestly can’t remember.  After Ki wrapped them some of the stuff I was like, why are there so many presents, I don’t remember what I bought lol

I got my brother Arkham Origins for PS3 and a box of Bach’s Rescue Remedy Pastilles… which he is too nervous to even try which is dire proof that he needs to try them *heh*  I swear there was another little box for him but once again, no idea what was in it.. my memory is shot as you can see, I hope he enjoyed it.

For Tysen I got him a super cute pair of Santa jammies and a toddler drum playset that lights up, plays musics, and teaches them things like letters and numbers.

Tristin got a super awesome pirate play set and a couple football figures.

For Terry a t-shirt, a box of Moose Munch… and for him and my sister 2 mugs and some honey chai

And for my dad, a set of 10 frames and I had 10 family pics printed from my printing company.  Since he bought that house he has been talking about how he wanted pictures like Max & Donnabelle had when they owned it.  Well I knew that he would never buy frames and print pictures so I went ahead and did some for him.  And a mug and some coffee.

I also made origami lucky star ornaments for everyone.

After we left he actually sent me a text that said “I had fun tonight.  I like it when we all get together for Christmas.  Thanks for the pictures, they mean a lot to me.  Love, dad”  That was like shocking… so not like my dad to say a gesture meant a lot to him.  That was my best gift for the night, to be given that gesture of gratitude for a gift that I put a lot of love into.

Of course we all later had the conversation that dad continues to looks terrible and how we wonder if he will ever go to the doctor and then there is the reserved sigh that no he will not and it is best to just enjoy the time we have left with him however long it may be.  I hate the thought of going through all I am going through now with my husband and at any time I could lose my dad on top of it.  I’d rather just pretend it won’t happen that way, it is just too much to think about.

**

Sunday I didn’t leave my bed.  Okay once I made it to the couch but then I decided my bed felt safer and went back there, where I stayed watching football and taking naps.  I don’t know if I have ever really done that, just decided to stay in bed all day.  I just felt that overwhelming feeling creeping in and I thought to myself… maybe I shouldn’t try to fight it… so I didn’t it.  Instead I did what I needed to do and if that was to not leave my bed all day then it saved me.

There has been a bit of edginess the past couple of days due to Ki’s chest catheter that drains the reoccurring pleural effusion.  The fluid has been a bit pinkish… Sunday it was really pinkish… Monday it was looking more like it typically does… yellow but still a slight hint of pink. Today it had a tint of pink and was more orangish.  They told us it could change colors and not to freak out if it does but it is still scary.  A nurse from the pulmonary doctor called us back about another issue concerning the drainage kits while we were doing the draining Monday morning and we missed the call since hands have gotta stay sterile with the gloves on and everything so he called back afterwards to and left a message about what they called about and updated on the color of the fluid, just to let them know.

I have tried my damndest to try to become accepting of the chest catheter.  I try to think of it as a wonderful modern medical miracle that allows somebody who is having all these issues to be at home and function like a normal human being.  I try to be positive about it, but it just breaks me sometimes because it is like…how did this become normal?  And yet it is a constant reminder of what isn’t normal.  When that thing is out of him, I never want to smell another fucking alcohol swab ever again.  My hands still shake and every muscle in my body still tightens to uncomfortable levels when dealing with it.  Not that it is easy for him either, I’m never saying that me having to help deal with it is worse than him having to have it inside of his body, not at all.  But it’s just… well things you never thought you would know about in life.

Since the last hospitalization Ki has moved past the denial he said he felt.  I didn’t know he was in such denial but I suspected when initially we could not talk about the fact that he would need a liver transplant without an outburst of “I don’t want to focus on that right now.”  Now he focuses on it.

He told me his depression was very deep upon first leaving the hospital this last time.  I knew it but I didn’t know how bad he really felt until he told me.  He didn’t necessarily hide it at all but there was a thought process I was  unaware of.  He told me that the support group meeting is what pulled him out of it, he realized that other people have been through this and worse and pulled through and survived.  Since then he has been facing this more head on than perhaps even I have if I am being truthful.  He has been joining online support groups as well and talking to people one on one and getting information.  Sometimes I think the information is too much… like okay let us not focus on all the negatives and just take it if it occurs but I guess if having that information empowers him, who am I to tell him that it is wrong.  With me, too much information can be a bad thing because then I overthink and obsess about things that I might not ever have to worry about.  And still things you didn’t think to obsess about happen (ex: chest catheter).

All that I want is for him to get on that list.  After that I feel like I can start to deal with every thing else.  The list gives me hope.  Until he is on it I feel like we are just kind of blowing in the breeze..l lost in all of this.

**

Last night I finished wrapping all the gifts and getting them under the tree.  Once again it does not “feel” like Christmas.  I realize I say this every year.  I don’t know where the magic is.  I don’t know what is supposed to make it feel like Christmas.  Maybe it was the routine as a child… winter break from school, parents putting out Christmas stuff, snow, the excitement for “Santa” coming, tradition… Some of it gets lost in adulthood, you can have tradition but you also have to still clean the house and work and some of the magic disappears when you’re the one who is walking through hoards of people at the mall to find the perfect gift.

This year of course I am once again drawn to wanting to hold on to every moment, the realization of never knowing if you will get another holiday season with a loved one after all that has happened this year.  Realizing you just never know what could happen and when.  Try as you might, like I said about Thanksgiving, you just can’t capture it how you want to.  You literally want to stop time… freeze the moment, the day, the week, the season.

I find it weird how something so dramatic can be happening in your life but you still have to find a level of normal to operate on.  Humans are such weird creatures.  The need to find order in chaos.  The fact that everything goes on, even when it sometimes feels like there is no way it possibly could.  When I think about families in the war torn streets of Syria or those in our own country that go to sleep at night on the streets…things like that…. the resiliency of the human will just amazes me.

I find myself being somewhat repulsed by my history of taking things for granted.  It had gotten especially bad before all this happened.  I kind of look back on the person I was turning into with disgust.  I was just becoming more selfish, more material oriented. This all snapped me out of that in dramatic fashion.  I know it is of no use to regret the past, it doesn’t matter I cannot change it now.  But I just wish I could have been more grateful.  Be grateful now.  Always.  That is the lesson kids.

**

Speaking of wish, I wish I would have gotten the gifts under the tree earlier.  It’s not about the gifts, just the way it looks and the memories it invokes.  A tree with pretty packages placed underneath, reminds me of being a child and the magic of waking up on Christmas morning to see that “Santa” had came.  My sister would always wake up first and wake me up and we would go out and be taken over by the magic of the tree, newly christened with gifts.  Such good memories.  I hate with how with age they become less vivid.  I wish I had grown up in the age of cell phones… you would have pictures and videos of everything that ever happened lol

I long for a child of my own to give that magic too.  I don’t talk about it anymore.  I don’t see the point.  He still talks about it.  Hell the other night be brought up the possibility of a sperm donor if the situation were to arise that having biological children would not be a wise idea due to the genetic possibility of Alpha 1.  I still have to be tested… but our children would definitely be carriers, I still have to educate myself completely on what that would mean for them. He has not forgotten how much children mean to me.  But me.  I want to forget.  And so I try.

**

But today is not the day for lamenting.  Nor is any day really.  Each day is a precious gift and living by each moment is the only way to truly enjoy this life.  So I should go finish with my Christmas Eve task and thank God for another beautiful day on this planet.  Merry Christmas everyone.

Aside

I’ve heard other people say that Christmas feels weird this year.  I expected mine too seeing current life circumstances but something else about it all feels weird too, so I guess I’m not alone.  I guess it seems sort of like it just snuck up this year.  Perhaps it was Thanksgiving being so late?  I don’t know but now I’m desperately scrambling to get Christmas shopping finished and all I really want to do is sit in front of  my computer and listen to music. (No I’m seriously on a music binge tonight, it is doing good things for my soul.)

This past weekend we were supposed to have a Christmas gathering at my mom’s house but instead we got 7 inches of snow, so that killed that.  Usually when they call for 7″ of snow we get 1″.. this time we got it all.  I only like snow when it is falling because it looks pretty, after everything is blanketed in white for a few and the snow stops falling it can just gtfo, I’m done.  But at any rate we now have to reschedule Christmas at mom’s.  This weekend is the gathering at my sister’s but time will tell if that pans out since they are once again calling for snow. Unfortunately not being able to make it to mom’s left me with a whole pan of 3 cheese garlic potatoes and a whole sugar cream pie, which…yeah…. not good for my ever continuing weight loss efforts.

I actually can’t believe I’m currently awake, I’ve been falling asleep way too early and awaking way to early.  Tonight I would like to accomplish to task of ordering the rest of dad’s Christmas presents but I am now battling a ROES photo ordering system that I have never used before and don’t have much patience.  Grr.

Ki went to a meeting with his business partners tonight.  I like seeing him go back to the routine of things.  My fingers are always crossed that maybe things can stay as normal as normal can be at this point and maybe we can get to the transplant stage without a bunch of horrible shit happening.

Well perhaps I will be able to post something of substance soon.  Still working out the kinks of this whole seasonal depression added to life depression bullshit.

Aside

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