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.

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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

climbing out

The past week or so has been extremely difficult.  I fell and fell hard.  Not only with what is going on, but I am also a sufferer of Seasonal Affective Disorder and as we approach the shortest day of the year, I feel its effects very strongly and often I feel like I literally cannot control them which is beyond frustrating.  You want your brain to do one thing and yet it demands another.  I feel like I should be a bear when winter rolls around, it’s not fair that I can’t just eat a whole lot and then go to sleep for a few months, awaking when the sunshine decides to stay longer than a mere third of the day.

My husband has resorted to giving me pep talks.  Oy.  But in doing so he has made me feel better because I see him wanting to fight and fight hard.  He told me how depressed he was after this last hospitalization.  That he just felt like he didn’t want to fight this.  But then the support group meeting that I took him too changed everything.  The day that we went there was a heart transplant survivor there talking.  And there is also a double lung transplant survivor in the group who talked some.  It was strange to finally go to a meeting and they were talking about organ transplants that day since that is not something they typically talk about.  But he told me that that day changed his perspective, because he realized that those people had gone through that and there they were, going on living their lives and it gave him hope and inspiration.  Since then he’s been very proactive… finding others to talk with about all this, getting out and doing things.  He’s doing amazing, which begs the question, wtf is wrong with me?

Oh yeah..the SAD thing.  And just generally being scared and anxious.  The closer we get to another specialists appointment, I think I find myself feeling more anxious because there is always that…what will they say, what will they want to do next, when will we get on to the transplant team and then my God…going through that whole process.  So much to take in.  And truly, I need so much more support than I currently have but I don’t really know where to find it.  There is our local Alpha 1 support group but they cease meetings during the winter months for the most part.  I have already decided that once we get on the transplant list that we will make the monthly trip down to the hospital’s transplant support group and hopefully find one around here as well.  I stopped going to my weekly meditation which was a horrible idea and I really must start up again.

The past couple of days I have sat in front of my blue therapy light.  Something I should have started clear back in October to prevent some of this but that fact that I’m doing it now is important.  I am going to pull my gratitude journal out from under the couch where it has been since this summer and remember things I am grateful for every day.  I am going to work up the motivation to go back to weekly meditation and quit preaching to Ki that he should do it and start doing it again every day and invite him to do it with me instead.  I am going to try to do more of the things that make me happy even if I have to start off myself by forcing myself to do them.  I don’t want to be sad or miserable and I don’t want to waste any moment with my husband because of my depression or my anxiety.

I think there are also things that I need to stop doing just to make myself a little happier, at least while we are facing this hurdle.  For example I care immensely about what is going on in this world but there have been times I have found myself just spiraling into a depression after spending too much time immersed in reading about things that I can’t directly control.  I’ll get so angry and so upset about the ugliness in the world and realize that while it is good to be informed, perhaps my time would be better spent focusing on things that are positive, people who are bringing about change, things I can do to make a positive impact… instead of seething at the ugliness.  It finally dawned on me that both sides seem to scream in their own ways “The world is a scary place and everybody wants to take something from you” and you know what the causes… it causes people to act out of fear instead of out of love and that’s really the biggest thing wrong in this world today.

Acting out of love is something I really want to do for the Alpha 1 community now.  The rest of my life will somehow be spent helping to spread awareness about Alpha 1 and helping people in whatever way I can.  I also want to find ways to help spread the word about the importance of being an organ donor.  These are things that you never think are going to directly impact your life and then when it does it makes you want to get out there and let the world know what is going on.  If this had to have entered our lives, it won’t be without meaning.

I also think some of my sadness… came from that new found information that the friend-actually more of an acquaintance-about to become a stranger is (still) an addict.  It hurts because in the past year, I really tried to confine in her some personal things about my life which I hadn’t done in a while and of course Ki’s illness, I shared with her about it and told her my feelings and just hoped she would have been there for me and then to find out while I was sharing all that with her… she was not anywhere close to still being the person I thought she was.  There was very much a feeling of betrayal.  But I’m moving past that now, I just realized that that part of my life, where I knew that person is now over and while it is sad that we go from friends to strangers, sometimes it is necessary.

I’m just going to try my best from here on out to be positive and do good things in life and help my husband get past all this and hopefully I find my spot in life too.  Someday this will be in our past and I don’t want it to take any thing else away from us.

I’ve also decided that for the rest of Holidailies, I’m going to attempt not to really dwell on this any more.  If I make anymore posts regarding the transplant or Alpha 1 it will be to share information.  If something comes up in our lives regarding all this, I will of course share, but I would really like to spend the rest of the holiday season trying to focus on positive things and enjoying this season.  I definitely owe that to myself and Ki.

Sending a blessing to those who read pity party posts

Because that is probably what this is.

I don’t know what to write about the past couple of days.   I’m not in that holiday mood this year for obvious reasons even tho I want to be because Ki loves Christmas.

I’m feeling depressed about everything that is happening and on top of it good old seasonal depression is kicking in.  My mother in law bought me a blue light last year to help combat it but frankly I just think why bother and so I don’t.   It just feels like it doesn’t matter.

I don’t know how to kick this.   I can’t get my mind out of what should have been. And I can’t look at anything around me without seeing the impermanence of it all and wondering if I will have it again.   Then I start wondering what the point of any of it all is.  I’m lost.

I feel like my entire life has been about waiting.  I have waited to live.   I fear my time will be up and that is all my life will have consisted of, waiting. If I were to die tomorrow, this entire gift of existence would have been mostly wasted.

I’ve been waiting to live.

I remember when it began, as a child 9 or 10, and you start thinking that life begins when you get a bit older.  Maybe as a teenager you will start having wonderful adventures,  I mean they give you a list of things to look forward to… A list of firsts, school dances, prom, parties.

I had fun when I was a teenager but that is where the waiting started and then grew.

Next thing I know I can’t wait to leave home,  I feel like life isn’t really living until then.  Once I moved out tho the next thing became my fixation.

First I wanted to move out of state, then I was fixated on coming back.
Then school.  Then my unhappiness with school.  Different majors.  Getting engaged.  Planning a wedding. A house.  A baby.  Jobs.  The next thing,  the next thing… always the focus.

And now I am trapped in some strange land where my next focus is on my husband getting a new liver and it is such a bizarre focus that you think you will never encounter that at the same time your brain just wants to shut down and say enough, the next doesn’t matter anymore.

I’m like a next junkie.  I always thought the next thing in life would lead to fulfillment and well, I’m finally ready to admit that I have a problem because it didn’t.

I guess I’m willing to admit that I don’t know what I’m doing anymore.   Or maybe I never did.   I think that is why I often wonder why my husband is having to go thru this,  because he has so much more direction that me,  he knows how to live,  his dreams have made their way into reality much more effectively than mine. It isn’t fair.  I don’t want to see this slow him down, take him away from what he loves even tho it has started to.

I guess right now I feel a bit paralyzed.   There’s nothing more I can do for him right now than be his support.   And I just do not know what to do with and for myself.  There’s days when I am only focused on the present moment,  and then there are days like today.

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.

addiction rx

Tonight an old friend who nowadays is really more of an acquaintance confided to me her closely guarded secret she had been keeping for the past year.  After telling me that she and her husband had separated and I probed why, she told me that they had both become addicted to Oxycontin and other pain pills.

I was not shocked.  Not even a little.

Her life has been marred by addiction.  I have known her for, oh geez, next year will mark 20 yrs we have known each other.  In those 20, 16 of those years she has battled some kind of addiction.  You can see why I am not surprised by her admission.

Her addiction issues is what really woke up me up to how hardwired certain people can be to end up addicts.  Toss in some shitty life incidents for those people who are already hard wired and it is the perfect storm.

I wished her well in her recovery, but… well some may call me rather pessimistic but I prefer the term realist… I do not believe she will recover.   I wish her love.  I wish her light.  I wish her healing.  I send all of those things to her, but I know that she needs to find all those things within in order begin her recovery.  And I also know in her situation, where her brain is so highly wired towards addiction, she must be completely straight edge for the rest of her life in order to avoid addiction.  I know that she has never viewed that as an option and I don’t think she ever will, hence her recovery is doomed from the start.  I have never once seen someone with addiction issues attempt to moderate the substance they abuse and remain successful.

The thing that kills me though is that she has children and they have never not known life with parents who weren’t addicts.  I feel almost certain that they are likely to go on to repeat the pain patterns that have thrown their parents’ lives into turmoil.    I just think about how those poor babies have been deprived of so much and deserve so much better.  My heart just aches for them.  I guess I don’t understand how you can look at your children, and do that to them.  Put pills before your babies.  It doesn’t make any sense to me whatsoever.

My generation and ones after it are suffering an epidemic of prescription drug abuse.  I have known people who have died from abusing prescription drugs and many more who have destroyed their lives with them.  I see stronger and stronger pain meds being given out, hear about more and more doctors becoming crooked and becoming dealers for the right price to the right patients.  It’s a really disturbing trend.

My acquaintance’s automatic reaction was to blame her husband, since he was first in possession of pain pills for a back injury.  But he didn’t put them in her hand, he didn’t force her to swallow them.  Since there is not yet any personal responsibility, again… I don’t hold very high hopes for her recovery.  What I have learned about addiction and ending it is… you can’t do it for your husband, your children, your mom, your dad, the neighbors, your church… any of that.  You have to be willing to do it for yourself.  Until you are the only person you care about saving and sparing… sparing your children or your family is never going to be enough, because your heart isn’t really in it if it isn’t for you.  Addiction begins with selfish choices.  Ironically enough it can also end with what you could call selfish choices (but of course they are really not), putting yourself first… loving yourself first.  I don’t think people realize you have to love yourself and respect yourself in order to love and respect other people to the full extent of your ability.  To end addiction one must heal all the things that they are attempting to cover up with their addiction.  It is an immense undertaking.  I understand why people so often fail.  I just wish it didn’t have to be that way.  Life is hard, no doubt.  But in the end, we are all still responsible for our own choices.  And though I am supportive of any steps she takes towards actual recovery, I am glad I have kept my distance over the past year and will continue to do so.  The only way I can support our friendship again is if she is 100% clean.

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!!!

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