My Sister

My Sister Part 2

Posted on by kmarrs

Liver failure blog bpd borderline personality disorderI.  Wow.  Trying to write these words.  Writing it.  Seeing it in black and white makes it so real.  So incredibly real.

I suppose I should start by having you read this post on My Sister.  It’s only a month or so old.

So.  Her health is getting worse faster than they anticipated.  As of typing this, she has a week or two to get a transplant, or the next step is hospice.  Once hospice, they really only give it 3-4 months.

Her camp is fighting to get her a transplant, but the team sees her as noncompliant in a couple of really stupid ways.  So we’ll see.

I am not letting go of hope, but I’m also forcing myself to see reality.  I can’t assume either way basically.

And that’s all I’m really up to saying on the subject.

Assume you’ll hear from me either way this goes.

My Little Sister

Posted on by kmarrs

Liver failure blog bpd borderline personality disorder
I have made mention on here before of how my sister’s liver is basically failing and she became severely ill over the summer and through the fall of 2014.  I have gone back and forward with myself over what details I might offer on that situation.  It isn’t my life and isn’t my story.  However, she’s the only sister I have.

So let me back up about 20 years to tell the full story of a sisterhood in trouble.

Growing up and especially during our teenaged years we did not exactly get along.  We actually fought rather viciously.  There are so many things that could be blamed here, but aside from accepting my share of it, I’m not going to point fingers, name names, and list events.  It is suffice to say we were terrible sisters.

As young adults and well into my 20’s we never fought like we did, but we still picked at each other.  Basically, we didn’t necessarily like each other.  It was somewhere between Loki and Thor, and civil.  I mean I’d totes steal a battleship for her.  She’d totes follow me to another planet to bring justice for my crimes and make amends.  You know.  Only technically by age I’d be Thor.  Whatever.  You get the point perhaps.

Then a few years back one of us, I think her, decided that really we needed to grow up and be sisters, dammit.  We needed to make an effort to know each other as adults and get along for everyone’s sake.  We needed to attempt friendship.  And you know, we did, but you couldn’t call us close, even if we were friends.

Then in the summer of 2014 she came a little too close to death at the hands of the disease called alcoholism.  I’m not going into this too much as this is her story, but she was (is) an alcoholic and her liver was (is) failing.  As we all know alcoholism is a disease and not a choice, so fighting it was hard and took a couple attempts.  As well as a second, longer stay at the hospital when she came closer to death.  That was just over 5 months ago.  I know this as she is now proudly just over 5 months sober.  (She also quit smoking, you go girl, you fucking rock!)

Well, becoming sober and finding recovery was a huge help, but medically not enough.  She of course needed treatment for her failing liver.  They did all that could be done and sent her home with medications and steroids to continue with and awaited to see how much her liver would heal.  The answer was decidedly not enough.  So, my sister officially needs a transplant.  There are no further treatment options aside from this.  As she is 5 months sober and has not touched a drop since before that 5 month mark, getting a transplant is seriously doable.

Except her urine sample keeps showing alcohol use, despite her blood not.  They don’t necessarily assume secret drinking, but they can’t give her the transplant under those conditions.

Here is the deal.  Pick up any sort of hygiene product.  Check the ingredient list.  I bet alcohol is in it.  Including hand sanitizer (duh) but also things like toothpaste and deodorant in small, trace amounts.  Trace amounts that your skin soaks in and your liver gets rid of with no problem at all.  Won’t even show up in your pee.  Unless your liver really is that bad.  That close to total failure.  That’s how it shows up in your pee, but not your blood.

So she can’t be on the list, but she can fight to be reconsidered.  They aren’t just going to let her die without a fight.

She will be called up randomly and will have 24 hours to get herself to a specific medical lab where she will produce a specimen on the spot.  Think random drug test, only random alcohol test.  At first I think it’ll just be urine, but probably blood too at some point if needed.  That way if she is constantly and randomly showing she’s sober via her blood, even if her urine isn’t, she can prove her sobriety and they’ll either figure out what’s going on with her liver or just acknowledge it’s failing.  Either way she’s sober.

Additionally she is now a label reading champ and hopefully there will be nothing in her beauty, health, and food lineup that has alcohol in it.  It is hard because if that juice in your fridge is just the slightest bit fermented, you won’t notice and your liver will sort it out without issue.  Well, my sister also won’t notice, but her liver won’t sort it out at all.  So she also has to watch every bite she eats, as so much food has trace amounts.  Like certain food dyes and certain flavors of greek yogurt.

Needless to say this is a hard battle but my baby sister has a great team around her helping her fight it both in her family, her medical team, but also her big sister.

We are closer than ever.  Even have matching infinity “sister” necklaces should the world question.  I tell you there is nothing in the world like almost losing your baby sister before she even turns 30, to scare you into the relationship you should have had all along.  I’ve always loved her, but now I openly adore her. (Crap.  I’m crying again.  I do that these days.  About everything.)

Loki and Thor sure as hell don’t have that.

2014

Posted on by kmarrs

Borderline Personality Disorder BPDSo I really thought 2013 was the worst year ever.  Like nothing could possibly be worse.  I mean seriously.  2013 was total shit.

Then 2014 happened.  I know I’ve been really super quiet the past 12-18 months.  I think at some point it became an issue of “where the fuck do I even begin”.  Plus I was going through so much emotional shit.  I was a mess.  But I was a mess in the process of doing what needed done to make myself better.

However, medication can’t fix everything.  So let’s take a look at the pros (there are some) and cons (oh good lord) of 2014.  Then my goal for 2015 will come tomorrow.

 

Pros of 2014

I am medicated.  It seems a decent combo.  I’m on an anti-depressant, like lest time.  I’m on a mood stabilizer, like last time.  I’m not on an anti-psychotic, but at this time it does not seem necessary.  I have added an anti-anxiety, because it became necessary.

 

I have hair!  Mind you, I was just fine with shaving my head.  However, I reached a point where I decided I wanted hair again and I have worked very hard at making it happen.  I have a billion hair things to keep it out of my face and the anti-anxiety helps a lot.

 

I am back in with Patrick. (Uh, this list is not in order of importance.  Pat is more important than hair, about tied with meds.)  I knew by Christmas of 2013 that it was a goal, but I was not ready for it.  So even after we were “back” I still lived alone for a couple of months to sort myself out some.  Plus it allowed us to fix what needed fixed while we were still in our separate corners.  Additionally, it allowed me time to miss him like crazy which at that point was healthy and beneficial for the end goal of living together.

 

We have a house!  We are renting it, but we can rent to own once ready.  In the meantime we have a huge yard, privacy, and no shared walls.  If something breaks, someone else fixes it.  We are allowed to paint, hang photos, build a fence.  Just as long as we can leave it how we found it should we move.  I, however, plan to grow old and die here unless my finances really take off.  The neighborhood is super quiet, minus the occasional air force jet or helicopter.  And as of yet we have yet to be annoyed by that, because we’re still too in awe.  Plus, most of the air traffic is during the day, not when we are trying to sleep.  So we really don’t mind.

 

I completed a full year of school.  One full-time trimester, and 2 part-time.  This last one about did me in but I’m am still pulling straight A’s for a perfect 4.0 GPA.  I was also invited to be an International Scholar Laureate and represent American business student in Hong Kong this summer.  I turned it down because it had a 5-6K price tag that would not be covered by loans and aid, but I’m still honored I was even invited.  It also led to the knowledge that there are generally a lot of programs like this some of which school aid will cover.  So in a year or two I’m going to check out spending a few weeks studying in London or something.

 

You know what?  I had the best Christmas I have had in a really long time.  Pat and I hosted.  His mother was here until she had to leave for medical reasons.  Both his brothers were here.  Our niece and a brother-in-law stopped in for a bit.  My mom, dad, sister, and brother-in-law was here.  Pat cooked an amazing meal.  There was love, laughter, and some really well thought out presents.  I loved what I received, but I really loved what I gave just as much.

 

We had a young kitty follow my oldest home and then in the front door last November.  He was clearly a stray as he was nothing but fur and bones, but he was also obviously use to people as he is a snuggler.  So we named him Jeff, and gave him a home.  Jeff has since made it clear I’m his human, which is odd as cats normally don’t like me.  However, this cat is a wee bit obsessed.  No complaints here.  He sleeps on my feet when I’m working on my desk.  He curls up with me in bed.  And now that I mostly have him convinced that eating the toes of the human changing position under the covers is a bad idea, it makes for a very peaceful slumber.  He is a bit of an asshole.  However, he is my asshole and I didn’t know how badly I needed this cat in my life until he showed up.  May he stay with me until old age.

 

Cons of 2014

My favorite uncle passed away.  He was actually really sick for a very long time so this wasn’t a huge shock, but it still broke my heart.

 

We don’t have enough evidence to press charges, but there is every sign that my 3-year-old niece was molested.  Which…  She’s ok now, but for a while there she was pretty shook up.

 

My sister almost died of complete liver failure.  As she has now made this public knowledge, I can talk about it.  (I’ve wanted to talk about it.)  She has been an alcoholic for about 7 years now and it took her liver.  Where she was showing signs of not being healthy for a while, it was only this past year where it became enough for a doctor to really look her over and realize that it only would have been a matter of a few more days or weeks and her liver would have fully stopped functioning.  She was in and out of the hospital over the course of the year.  Especially the last third of it.  She has been given blood transfusions, potassium, steroid, antibiotics, everything.  She has been 4 months sober as of Christmas Eve and has stopped smoking (SO proud of her!) and the doctors have waited things out to see just how much her liver could heal on its own.  See the thing it, the specialist who has taken a look says he doesn’t give a damn how much she drank in the past 7 years, her liver looks like it belongs to someone who has drunk heavily for closer to 30 or 40.  So there is every sign that there is an underlying issue.  However, they can’t find it.  So they got her blood work looking good and all the meds in her and wanted to see how much her liver could heal with all their care, and no drinking.  However, sadly, it just can’t heal itself enough.  They had hoped, but truthfully aren’t surprised.  However, they now know exactly where she stands so they can put her on the transplant list.  The full day appointment with that team is coming up.  They will run a million tests to make sure she is otherwise healthy and if she passes all that (she is young and is healthy aside from the liver) she will be on the list and will hopefully have her new liver in a couple of months.  Maybe as early as January, possibly as late as March, but most likely we’re looking at February for that.  This is scary as fuck because her body could still reject the transplant, but with her age and over all health,they think her prognosis is really damn good.

 

I lost the most important friend in my life (that isn’t my husband).  Not because of drama, but simply drifting apart and my heart may never fully heal from this loss.  I know we will always be there for one another in times of need, but as we use to see each other daily and we’re now down to a couple of text messages a month… It will just never ever be the same.  My world has a big gaping hole in it now.  A hole that not just anyone can fill.

I Don’t Have Photographic Evidence

Posted on by kmarrs

Hippopotamus and the BloggessOn the 19th of March, my mom, sister and I piled into my mom’s car and drove.  Her GPS “Maddy” took us the scenic route past farms, cows, horses and trains, without an interstate in sight.  But we were in no hurry.  We gave ourselves 5 hours to make a 2 hour drive.

We got to the bookstore in Dayton with plenty of time, so we parked the car and decided we’d go into the bookstore to look around, and find out event details.

Around this time, I realized my husband had given me a 50 with the idea that he didn’t like me wondering so far from home without any sort of cash.  I sent him a quick note warning him he’d set me loose in a bookstore with cash.  He made it clear he had been aware longer than I had, of the situation, and that I would indeed owe him.

There was one survivor.  He goes by Washington.

Funny how all three of us bookworms didn’t really realize that the book signing in a book store would involve, you know, many, many books.  I think we blocked that part out in our quest.

Our quest to meet The Bloggess.

After we spent ourselves broke, we wandered to a nearby subway for an early dinner and then a few other shops to poke around.  But with only an hour and a half left before the signing started, we made our way back to the bookstore to find our place in line.  With a heads-up from the vixen Dawnie, I knew we needed to be there well in advance.  We were the second group in line, but it grew well before 6, when we could find seats.  By the time The Bloggess was presented at 7, it was standing room only.

We had front row seats.  Score!

The Dayton reading had the privilege to be the audience that was not allowed to witness a single curse word, as she read a chapter from her book.  So Jenny, in advance, set about finding the chapter with the fewest F-bombs, and friends.  The winning chapter had only 12 words that needed replaced with hippopotamus.  You heard me, hippopotamus.  But oh you should have heard her!

We laughed, we cried, we laughed some more.

Then we single file got to meet the Goddess that is the Bloggess and have her sign our books.  Our coveted books of inappropriate hilarity.  I was lucky enough to be able to have 2 copies signed.  I bought the paperback version for myself (with a new bonus chapter, yo!) and had my older hardback version signed for my good friend Lisa who was spending the day back in Columbus growing older.  No, seriously, it was her birthday.  When I mentioned this to Jenny, she was sure to wish her a happy birthday in writing.  Lisa is one lucky hippopotamus!

We are all very lucky hippopotamuses.  Not just that this book has been written by someone so very real and honest and inappropriately hilarious.

But that this single person could make it clear to all of us who are so very isolated and alone, that we are in fact one of millions and not so different after all, is something we all needed.  We aren’t the only one with chronic pain.  We aren’t the only one with crippling anxiety.  We aren’t the only one with depression so bad we can’t leave our bed for days if not weeks.  We aren’t the only one who has cut to feel something.  We aren’t the only one.  You, I, Jenny.  We are all so unique but in the ways we need to be the same, to not be alone, Jenny has made it clear we are a community.  She has given us that gift.

So we are very lucky hippopotami indeed!

Related

Posted on by kmarrs

I look at early days baby pictures of Luke and I see Sammy.
I look at early days baby pics of Thomas and I see Sammy.
So…

Thomas is my sister Rachel’s doppelgänger.
Luke is mine.

Thomas and Rachel at 9 months is the same child.
Me and Luke at 9 months? Same child.

Me and Rachel, obviously related, but not doppelgängers.
Thomas and Luke, obviously related but not  doppelgängers.

I look at early days baby pictures of Luke and I see Sammy.
I look at early days baby pics of Thomas and I see Sammy.
So…

Luke