hopeful

Monday the university hospital called to begin setting up appointments for us to consult with liver doctors and hopefully on to the transplant team.  Yesterday they sent some paperwork and directions.  We are scheduled for Jan 3rd unless there is a cancellation and we could come in earlier but Jan 3rd is right around the corner anyway so it isn’t too long of a wait either way.  I don’t look forward to driving 2.5 hours or so into a city that I do not know my way around but I look forward to maybe getting more hope.  I hope it’s hope.  I always seem to try to remain neutral on these situations, I feel like if I get too optimistic I’ll jinx it but naturally I do not want to be pessimistic either.

I do stay positive about the outlook of all this though.  I do try to believe with all my heart that this is going to work out, that he’ll be a success story in the end of all this.  I always try to think “at least there is this option and possibility” because there are lots of things…. well….     Hope.  I cling to it.  Always.  Even though it’s scary, because you just never know what direction any of this could take.   I guess that is what faith is all about… you believe even if you can’t see it yet.

You know I was going to write more but I think I will leave it at that.  I don’t want to dissect that positivity after all.

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Thanksgiving

This Thanksgiving was bittersweet I suppose. On one hand I felt extremely blessed for many reasons. Such as having my family all come together to celebrate the day, my MIL visiting for Thanksgiving this year, Ki feeling good, having lots of yummy food that didn’t feel rushed at all this year, forgetting momentarily the difficulties we are facing.

And on the other hand… that deep well of grief lingered. Realizing that compared to my thankfulness for this year, I had somehow taken for granted the Thanksgivings of previous years. The realization that I had just always assumed that it was going to be a certain way, that every thing would be the same every year. I suppose we all do it. But then things happen in life that remind you that you do it and it feels like you somehow missed the importance of every previous time you had a chance to hold something really dear. It just feels like no matter what, now that you know, you couldn’t go back and do it enough if you tried to.

I had to stop myself, reminding myself what difference did it make to wonder/worry what next year’s Thanksgiving would be like. In fact, beyond the next day or so, if I think any further.. it feels like somebody punched me in the gut because I truly do not know what is going to happen and how things are going to be. I have realized that I have always taken for granted this idea of thinking of the future as being okay and secure and now I truly realize that it is an unpredictable force. And you can’t live in it because it will terrify you constantly.

Every single day that is “good” I send a prayer of gratitude to the universe. It means more than it ever has, although it always should have meant so much. I am happy that the walls of my house were awash with happiness and laughter that day. I truly believe the energy we carry and others bring penetrate the walls of where we call home. I want as much happiness and laughter in mine as possible.

I also find myself thinking, that the people we love in our lives, it doesn’t matter how many times we tell them that we love them, how much time we spend with them, how much gratitude we have for them you always feel like there should be more love, more time, more showing them how much they mean to you… even if you did it every second of every single day, it would never be enough. Life now has an even more sacred quality to it that it didn’t have before. And now it always will, no matter what happens. I guess if there is any gift in all of this, there it is… I no longer find myself taking average ordinary days for granted. I have so much gratitude for all that is around me.

Thank you so much for making this a Best of Holidailies 2013 selection!!!

the hardest post to write

I spent a long time debating if I would ever come back to this blog.  A large part of me said no, that I would just use my paper journal and leave snippets of my life on my tumblr.  But then I saw Holidailes starting up again via a post on Facebook and I thought how I have done Holidailies for many years now.  Perhaps it was tell me to come back to my blog… I don’t know.  I rarely get on Facebook these days, it seems strange I even saw the reminder.

So then I have asked myself, how do I start this post. How do I explain what has happened… My last post here, I was declaring my intent to the universe.  Guess what?  Sometimes you can declare your intent to the universe and the universe answers back, “No.”

The universe didn’t just answer back no, it crushed my life.  Our lives.

See everything was going so well…. this past winter we had moved into this bigger house, Ki’s business started really taking off, money started flowing in, and there it was… August I was going to go and start the work up for fertility shit… we were finally going to “officially” try for our baby.  A couple weeks before the doctor appointment was to happen though I laid on the couch and said “every thing feels weird lately”.  He agreed and quipped “yeah like deciding to have a baby.”  In my heart I felt it and in my head I said “we aren’t going to have a baby.”

You see… I am not going to go back over the whole story.  Just this much of the back story has made my heart ache enough.  This is the only thing that currently matters now.  We discovered that my husband has Alpha 1 Antitrypsin Deficiency.  It is genetically based, meaning he got it because his mom and dad were both carries.  In Alpha 1, the liver either fails to produce the antitrypsin protein or produces screwed up copies of if that get trapped in the liver (I know, you probably didn’t even know your body made this protein, I know I didn’t).  In the grand majority of cases, this causes severe lung damage of the course of one’s life, usually resulting in COPD.  The protein protects the lungs.  They have a protein infusion therapy for those affected in this way and can essentially stop further damage, although if you’ve already got pretty severe COPD it probably still isn’t extremely comforting.  It sucks when it effects the lungs but things can get worse,…like..

In a small number of cases, the protein gets stuck in the liver and damages it.  Scar tissue builds up and the liver begins to fail.  The only measure that can be taken is a liver transplant.

See… this is where we are.  My husband needs a liver transplant.  I live with this reality everyday and still writing about it can make it hard to breathe.  Most people… they go until they are 50… 60 years old until they find out that Alpha 1 has caused this damage.  I find myself asking nearly every day… if it it had to happen, why didn’t we get another 25-30 years like most people?  Why is this happening to him in his 30s?  And I’m not even 30 yet… how can my husband need a liver transplant?  What will our futures be like?  And I am scared to death of losing him.

My new normal is weird because he was hospitalized again at the beginning of the month and we have a new companion in our lives, a chest catheter that I help him drain every day.  It’s strange how normal it has suddenly become, but on days when I am already irritated, everything about the chest catheter freaks me out and I feel myself become enraged at it because it is a reminder of how fucked up everything is.

At the beginning of the new year we will hopefully begin steps towards getting him on a transplant list.  There’s a lot of worries.  Especially financial ones.  If I can hope that those will work out for the best then I am at least reminded that we live in the part of the country where the wait lists for donated livers is the shortest.  We live near a medical facility that boasts some of the highest survival rates and shortest wait times in the country for livers.

There is a reminder that there is hope.  There are things that are completely hopeless.  We are not out of hope yet.  I pray we never are.

I haven’t talked about this on Facebook yet because I just haven’t been ready. I don’t know how to make that post yet.  Of course there are people who know among our close friends and family, but publicly explaining all this in the context of Facebook… yeah I’ll reserve that for another time.

For a while, I struggled.  I would envision the life we were supposed to have been leading.  Maybe I would be pregnant already right now, who knows.  It fucked with me for a while, but now… now it is like it didn’t ever exist, it was a life somebody else lived.  I don’t know it anymore.  It comes back sometimes, as grief… so close to have absolutely everything ripped away but I guess I still believe everything happens for a reason.  And that some things aren’t meant to be.

But I guess when the person you love most is facing a life threatening illness it puts a lot of things into perspective.  Like realizing no physical thing could ever replace who they are and what they mean to you in life.  That you could spend the rest of your days in a shack eating a tin of beans as long as they were by your side.  And mourning for souls that never existed is ridiculous when faced with losing one that has been with your half your life.

Much to my surprise…. I am down another 2.2 lbs this week.  I really wasn’t expecting to have lost any weight this week for some reason, probably b/c I totally slacked on exercise even though I was sticking to my low sugar/carb plan for the most part.  If I can keep this up I am totally on track to keep with my 10lbs a month ideal.  I think I have finally found something that works and that feels awesome.  Now I just need to keep myself motivated with the exercise too, I gotta admit sometimes that is harder than watching what I eat.

Also to my surprise… I started cramping and spotting.  No full blown AF yet but this is the closest I’ve been to it in damn… I forget how long.  I’m just shocked.  Vitamin D3 miracle?  Exercise and cutting sugar?  I dunno but it makes me hopeful.

***

Easter at dad’s yesterday.  Was kind of dreading it tbh with the events as of late.  I made no hurry to get there to far ahead of dinner time.  As it were, dad had been running around with Terry all day doing this and that and wasn’t even there that much.  We ate, had a little Easter egg hunt for Tristin, dad once again took off with Terry to get something from grandma’s house… sat there and played with the boys and talked to Jess for the most part.

Dad looked better than he did last weekend.  I mean he still looks pretty bad but last week I could barely stand to look at him.  He had a little bit of color back this yesterday.  Only see him fall asleep while sitting a couple of times.  If he’s standing, he’s in pain from his back, but he’s alert.  He claims he’s going back to the doctor this week but we’ll see… I don’t have my hopes up at all that he’ll get to the bottom of all this….my worry doesn’t cease.

bad ideas: staying up drinking coffee all night

Derp.

Dad lied to everyone about the doctor appointment.  Boy was gonna move in with him and dad managed to pick a fight with him and Boy had just had enough and decided he couldn’t live with him again and have drama with him.  I’m just working on making peace in my heart that I did all I could do and at this point whatever happens, happens.  Do I think he will be here in a year?  Honestly, no.  I don’t like saying that, it feels surreal to say that, but in my heart I know his time is very limited.  I just want to prepare myself for it in some way because honestly I had just been pretending prior to last week… denying that it could happen at any time.  Often times in my head, because I don’t see him a whole bunch, I keep this picture of the guy I knew most of my life growing up… and then I see him and it’s just fucking shocking.  Like my mind has this disconnect, it’s almost like, how can that really be him?

I hate worrying about my brother, but I do.  At times I feel like I have to protect him even though he is only 5 years younger than me.  And I always feel hurt for him because I think he would like to move in with dad, help him out, and have a good relationship with him but dad makes that absolutely impossible.  I was on the phone at 3am last night consoling him because he was just like “I’m done, I can’t do it anymore either” concerning the whole issue with dad.  I do know though that I will blow the fuck up at dad if he says one thing about Boy not moving in with him because it is his actions that caused him to change his mind.  For the past year all I’ve heard is “he should move in with me, he should move in with me” and then the kid is actually going to do it and you pick a fight that makes him say fuck it… really?  Really?  There’s a part of me that feels like he deserves to be alone then.

***

I managed to get back into classes this week.  Sunday night I ended up arranging my painting stuff in my office/studio and turned on some tunes and zoned out and painted to catch up a little.  It felt GREAT.  I kept thinking, okay if I can just have my creative process and some jams I’m set for the rest of my life.

Painting is almost like yoga…. you can’t be rushed.  It’s really teaching me how to slow down in my creative process because I really had an issue where I felt like I just had to rush through what I do… I get overly focused on the end result.  Oil painting, you can’t do that.  The paint takes days to dry, you can only do so much before it gets muddy, it’s a slow process and it’s actually been really rewarding to slow down and see that it isn’t only the end result that is worth it, but the whole entire process as well.

***

I’ve been doing really good at tracking calories, carbs, and sugar.  Lately some days though I’ve been having a rough time getting to my calorie count =/  It’s set on MyFitnessPal as 1280, which is close to the lowest they recommend.  At first that was definitely killing me, it was really hard and I frequently went over it but exercise always balanced it out for the most part so I was still probably burning more than I consumed in most cases.  It might just be the stress lately, I don’t feel much like eating.

I’ve been sticking really closely to the limiting of sugar.  I still don’t have a problem really staying within the recommended carbs.  I figure if I have a day or 2 where I go over the sugar count it’s not the end of the world because sometimes I just really want a piece of fruit or something dammit.  I still figure having 20 grams of sugar is nothing compared to having 100 grams of sugar so there’s no point in freaking out over one day.  It’s kind of awesome though because since I’ve gone on this almost drastic compared to what I’m used to low sugar thing, I don’t crave sugar like I used to at all.  I also don’t get as hungry, my blood sugar overall seems to stay a lot more stable.  I wonder if maybe I’m imagining it or not but I swear I feel like my stomach area looks like it is shrinking a bit already.

I don’t really miss real milk unless I think about it.  I bought unsweetened almond milk and it has been awesome!  It took a bit of getting used to because it didn’t have that creaminess of milk but now it kind of reminds me skim milk.

I bought some Truvia to try.  I had been using Stevia in the Raw but I was finding it to be a little on the bitter side.  I like the Truvia a lot better.  After several days of using it, it started tasting more and more like sugar to me.  I try not to use it too much… but if I’m having some Cheerio’s or something I’ll sprinkle a packet on… otherwise I mainly use it in my tea or iced coffee.

So yeah… this is all going much better than I expected!

i don’t know

I always think I couldn’t be any more disappointed with human beings more than I always am… and then somebody always proves me wrong.  I’m sure at some point there’s a bottom right?  Where you actually can’t be any more disappointed… anymore surprised by the lack of humanity humans possess?

**

Everything feels so hard now with dad’s health issue looming overhead.  If he’s not honest at the doctors and doesn’t tell them what is going on, I don’t know… I guess I should just prepare myself for the inevitable for sure then.  I know it’s dumb because not even tomorrow is guaranteed but I just want at least 10 more years with him and hell… I’d take 5.  Anything looks better than thinking he could go any time.

My mind can’t comprehend losing somebody I’m that close to… but my MIL tells me how terrified she is of losing her dad and he’s nearly 90 so I guess it never gets better… no matter how long they live it doesn’t make the thought of losing them any easier.

**

I don’t think I like herbal teas anymore… they are lacking the whole tea thing.  And that was a random thought.  Completely random.

**

School is really fucking hard for me with this constant anxiety about my dad.  Like during Spring Break I did nothing… b/c fuck you why should I have to do homework during Spring BREAK?  Do people take a vacation from work and go to work during it?    Then last week I just couldn’t do anything.  I just felt paralyzed.  So I’ve been worthless.  For 2 weeks.

And I’m sitting here now, and I want to be alone.  Not that I can’t shut my door( b/c I have a whole room that belongs solely to me now) and drown out everything… but I want to be truly completely alone.  I could paint… try to catch up… I don’t want any questions.. why am I painting, what am  I painting…. I don’t feel like small talk at all, even with people I love the most.  It’s nothing personal, this is just how I get.  I get now why he was so quiet when everything happened with his dad… I used to prod, try to get him to open up but sometimes you just don’t want to… talking about it reminds you that it’s real.  And it doesn’t change anything.

**

Saturday went to mom’s first.  It was our Easter thing with her although it seemed sort of weird.  Maybe it was just me.  I felt disconnected.  Boy & I went and hid eggs for Tristin in the yard.  It was funny because every single time he would find an egg he would exclaim “Easter Bunny!” and it was the intonation in his voice that made it so hilarious because it sounded like he just could not believe that the Easter Bunny would do something as silly as leave an Easter egg in that particular spot.  And he did it for every.single.egg so it just got more and more hilarious.  Mom had got him a pirate Easter basket and put it out behind the pump house (I’m sure that’s hillbilly slang for what it really is, but whatever lol) and told Tristin to look and see what the Easter Bunny left back there.  Oh his face lit up and he went running and was so thrilled, it was super cute.

The baby cared less about his Easter basket but chewed on his cloth frog it came with and laughed when I kissed his cheeks.

I didn’t get the boys anything yet, b/c I am going to give it to them next Saturday… we are supposed to have Easter at dad’s then…

We saw dad afterwards.  He was in the garage smoking when we pulled up.  Pisses me off so bad.  He sat down and the first half hour or so was painfully awkward to the point that I had to get up and leave the room a few times because I couldn’t stand seeing him the way he was.  When he sits he doesn’t stay awake.  He falls asleep talking, completely uncontrolled and then twitches and jerks awake.  I was so fucking relieved when my sister asked if I wanted to feed the baby some baby food so I could sit with my back to him for a bit because I just can’t take seeing him like that.

He eventually decided to get up and “wake up”.  When he is standing he doesn’t fall asleep.  He can barely walk because of his back and he stands in this extremely weird posture but he doesn’t fall asleep.  Terry offered to go with him to get 2 TVS from grandma’s he needed help with and his brother and nephew hadn’t helped him even though he had been trying to get them too the past month.  Jess & I stayed there with the boys.

He bought my great aunt’s and uncle’s house.  They are both dead now.  Donnabelle died a few months back and left the house and every thing in it to my dad’s brother and his kids.  Dad came into money via mom’s retirement that he got half of per the divorce… mom isn’t retired but her retirement from her longest job offered a payout of some sort…. and he ended up buying that house.

It is so weird because there are so many memories from it when we were kids that it seems really odd that it is dad’s house now.  And dad doesn’t have anything to fill it with.  So there’s some leftover furniture and stuff that his brother and his kids didn’t take so it’s this bare weird place.  We never went in certain places in the house when we were kids and now it’s like free to roam wherever and check stuff out.  It’s a good sized house but it felt even bigger when we were kids.  It’s super weird not to go to the front door and knock and see Max or Donnabelle get up from their recliner to open it.  They always sat in the living room watching game shows.  It’s weird to go in the kitchen and the buffet be gone… we always used to raid the candy jar.  Or the room that we used to sit in and watch MTV and goof off is dismantled and almost empty.  The vintage Sunkist clock over the table is gone.

I very much love the idea of making new memories there… with it being dad’s house…. but I’m oh so afraid to get my hopes up, to hope that he could truly bounce back.  There’s a stupid part of me that wants to think he could be like he was again but I have to realize how stupid that is, because even with other issues fixed… there’s things that can’t be fixed…  But even if all he could do is sit there and talk, that would be enough for me.  To have him there and not think that he was gonna fall over dead at any second.

**

This post is already filled with randomness so… I managed to lose almost 3lbs in the past week, so I guess my combo of randomness is working.  I hope it keeps working but I really do think that limiting sugar will be key for me.

black.

Thinking of emailing prof excuse and my rough outline for persuasive speech and say fuck going to class today… I have yet to sleep, it’s fucking ice cold out because spring is never gonna get here let alone is the sun ever going to come out again, and my mind doesn’t want to rest.

My mind doesn’t want to rest because my sister informed me that dad called her and told her that he was taken to the hospital yesterday b/c his leg swelled up bad.  He has a history of blood clots in his legs due to his cigarette smoking.  He told my sister that they didn’t know what was wrong with him, gave him some meds and told him to come back if it wasn’t better in a week.  BULLSHIT.  The real story is they probably ordered a bunch of tests for him and he flat out refused so they did the only thing they could do and that was send him home with some meds.  He is terrified of finding out the true extent of the damage caused by his smoking.  He’s admitted it to me on multiple occasions.

And then he also told her that he fell the other night, busted his head open on the glass oven door, and was bleeding profusely out of the head wound for a good hour before he got it stop.

Just what the fuck… I don’t know what to do anymore.  He needs to go to the doctor and be checked out head to toe.  He nearly falls all the time because of his back, he can barely walk.  He’s only 55 too, but he’s destroyed himself completely.  It’s like watching an old old man.  It just sickens me… not in that I’m disgusted with him, but the fact that cigarettes did this to an previously able bodied person.  It’s like a gawddamn PSA for reasons not to smoke.

He’s scared of finding out he only has 6 months to live or something.  If he did, he acts like the timeline somehow changes if he doesn’t know.  I think he wants to die without knowing death is coming, but I don’t get how he is living now is really any different than having a prognosis.  I want to tell him to stop being so fucking selfish, to think of his children.  Who wants a fucking call that their 50 some year old dad is dead one day?  Because the rate he is going, no way is he going to make it to 60.  Just.. no way.  It kills me to say that, but I know it.

I already just wait for it at times.  Things scare me.  A few months back my sister’s phone malfunctioned and sent me the same text like 12 times, and of course the text was one that would get your blood pressure shot sky high it was “CALL ME NOW”.  I didn’t realize her phone had malfunctioned and I just stood there shaking for the longest time before I could even call her back because I literally thought he was dead or something.

I had a dream a couple weeks ago that he was gone and I realized I would never talk to him again and it broke my heart in my dream and when I woke up.

I randomly save voicemails from him just in case… in case that’s all I have left soon.

When I’m too busy to answer his calls I feel so fucking guilty… what if that is the last time I get a call from him?  God… I hate fucking thinking it.  Knowing it will be reality at some point.

I feel like I’m already watching somebody who is terminal so what’s the fucking difference between knowing all that is wrong with him and not knowing?

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