Day 1300

I was looking at my day counter for completely other reasons and discovered...

...today is Day 1300.

Wow. Go me.

I wanted this in a strange fleeting “not sure I could -ever- have that” way for years and -years- before even trying. Took a while trying, too...but I kept at it.

Eventually I got here.

Day 1290

I didn't even realize it was a round-number day when I started this post; I just wanted to catch up and check in.  On Sunday November 24 I proved physics still works by sliding off the road onto a guardrail.

In my defense 1) it was snowing >1” per hour which I did not know when I left NJ 2) it was exactly 32 degrees Fahrenheit 3) I was hauling this damned bed for my brother in law the boxes of which got delivered to the wrong house.

I was not speeding - was going well under posted limits due to conditions but combo of curve, conditions and weight led to skid from which I could not recover.

There were so many other worse accidents that it took over an hour for law enforcement to arrive. Eventually however a nice young deputy gave me a lift the half-mile home, filled out accident report in my driveway and said he would wait with my vehicle till tow truck came. MUCH later Sunday the tow truck operator called to say my vehicle had been deposited at dealership and I did the insurance thing.

So that was pretty icky.  I didn't have sense enough to be scared at the time but everyone else helpfully asking "is that a BRIDGE?!?" kinda made me think about it. The answer is "yes" because the body of water is Oaks Creek which forms the back border of our property line a third to half mile right of the photo. It has a whole bunch of swampy bits at the shore and I don’t think it ever gets very deep, certainly not around there, so I would not have been in -mortal- peril but it would definitely have been Really Awful.

 

Fortunately that got settled before US Thanksgiving on Thursday. Our insurance facilitated getting the car to the body shop and getting me a rental car so things are okay for now. The car has a LOT of damage underneath -- will probably be in the low five figures -- but is not a total loss so I don't have to go through that new-to-me process.  I'm still a little shaken up by it not all the time but if I stop and think about it....and I've kind of avoided that road a bit since it happened. I figure it will fade in time. Or not, and that's okay too.  I just filled out the mandatory State of NY accident form and upon realizing that the checkboxes for "weather" "road conditions" and "type of road" were "snowing" "snow covered" and "curve and grade" I felt a little better about what happened. Less like I was somehow doing something -wrong- anyhow. 

 

Then of course we had US Thanksgiving and that was sort of a drag as the family is separate right now. Spouse, Eldest, SiL and Middle are all in the Pinelands while Youngest, BiL and I are in the Upstate NY house.  Not a problem for any of US but my mother in law and her older sister are six miles away from the NY house so I was put in the charming position of Doing Something For The Holiday with JUST my in-laws without my own spouse or two of my three kids.  I would have much preferred for the Something to be "nothing at all!" and Youngest was down with that plan but my mother in law wasn't about to have any of that.  She said "well I'm doing a turkey!" and I, the vegetarian, used that opportunity to say "fine I'll do ALL the sides and we have it at my place." 

MiL the Admitted Control Freak didn't like this but had to accept it. (Tee Hee.) 

Two Old Ladies For Thanksgiving went better than it could have gone, all things considered. They clearly didn't like the dogs and I did have to sit with mine for a while because he wouldn't stop barking otherwise but the dogs were confined and not interacting directly with anyone so it wasn't -that- much a hardship. MiL's turkey was Not Good -- very dry white meat and underdone-still-red bottom parts but that was an SEP (Somebody Else's Problem) for me, the non-carnivore. She arrived expecting to use both my oven and microwave to heat up her food --I'm wondering just how far ahead she prepared the bird. That went okay though -- I could Let It Go! -- as I'd done all the side dishes well in advance and made use of my warming drawer.  

 

Elderly Aunt (age 86) made a flan, which impressed me no end as I can't do caramelized sugar stuff at all. They made ME unmold it from the Bundt pan but it came right out in one piece. It kind of collapsed on the plate afterwards but it was indeed whole and tasted just fine. That was my favorite part of the entire event. Still is; we have one piece left. Looks a wreck but tastes great.

In any case it was two hours start to finish and I let her take my photograph which will turn out awful because she simply cannot take a good picture of me but that's okay as enough of her relatives are my FaceBook friends now that they'll know I don't really look that bad. 

 

Meanwhile I went to the office this morning to clear out my email and I'm surprised at how little of actual _substance_  happened in the six weeks I was away.  I guess that's good--? Not sure how it will be to go back tomorrow...I'm of mixed minds. 

Anyhow that's to let you know that life keeps on rushing right at you but you know what I DIDN"T do after that horrible accident? I did NOT say "I need you to go to the liquor store" to another licensed driver and I did NOT get more drunk than usual and all maudlin....and I did NOT have ANY kind of hangover this whole holiday week and that right there was a HUGE blessing. 

In fact...I know "the holidays" start pretty much now and don't wind up till New Years a whole month away.  I also know that culturally they're an excuse to booze it up even MORE than usual and try to convince non-imbibers to try and skimpy one-sippers to cut loose and that's really hard on anyone's willpower so let me say something from the other side:  it is So Fucking AWESOME to be hangover free during holiday season!! If you tell everyone at [event] that you'd love to but just -can't- because you had to start taking allergy medicine because [unexpected change in situation--can make up any silly thing you like] YOU can be smugly hangover-free too! 

I like "allergy medicine" because it's really vague but everyone knows at least ONE person who drank on top of cold medicine and was out scary-cold so they tend to back off when you drag it out.  You don't have to tell them that the "allergy" is to feeling shitty about yourself and the "medicine" is sobriety.

Day 1282

Sobriety just served as the bedrock on which I stood to have some difficult but important personal conversations. Trust me — I know I sound candy-assed or like I “bought into it” and it’s fine if I do. Right now I know for deep true fact that sober is definitely the way to be and is better in every way. I wish I’d learned this great thing earlier in life but hey, now is good too.

The one thing is....it takes a while. What seems like a BIG while in the early days: every bit of 2-3 -months- not weeks. Six months is rocky: I lost a really good quit - the one right before now - at just past the six month mark which is how I started this blog in the first place. But if you hang in there the world just quietly opens up for you. The path, even when rocky and hard, is at least not also so dark. It shines a helpful light.

Three and a Half Years

Last night someone asked the date and I said “the twenty-first” and realized “hey that’s my sober day I wonder how many months it is?” Three years six months is what.

How about that.

Day 1271

Long time no post.

It’s for a really common reason, too: alcohol in my life again. Just not my personal life. It’s touching - oh hell, fuck “touching” it’s rubbing really hard against a couple-few really close people in my life. Of course it’s a story but not MY story so I’ve just been keeping mum. As I’ve said a million times of late: I’m not ever gonna say anything about anyone else’s substances.

What I can say is that my own and my husband’s health are both doing just fine. I had my stitches out, got off narcotics and have weaned out of the sling. Got permission to drive but not to start PT yet. It is Bothering me to be out of work this long but every day I notice at least one thing that I couldn’t do before the surgery. I also notice every day at least one way in which I un-knot a little more emotionally from The Summer Of Healthcare.

I’m bad about recognizing low level pain AS pain. Turns into sadness/depression along the way. Family says “why so down?” I say “I’m not” then realize I’ve been using/doing -and- overdue for meds, which consist of Advil and Tylenol. Then in an hour I’m not so sad. I’ve also learned caffeine helps with all of the above. It’s worth doing too, as the other thing untreated pain makes me is mean-mouthed. Not as bad as a drunk with issues but definitely in that too-much-truth-too-bluntly kind of way.

Anyhow I percolate along. There are moments when I think I might explode in sheer frustration but there are also moments when I can appreciate the quiet satisfaction of just simply being. It’s a lot easier to do life sober although I know it absolutely doesn’t look like that from the drinking side of the street. Yeah, well...after three and a half years I STILL do not miss hangovers one single bit. Not a smidgeon.

Stay strong.

Day 1237

Had my surgery 10/2 and it was success. Hate wedge immobilization device though. Pain worse than I expected but much improved now, a week later.

Husband continues to improve which is very heartening.

I have NOT been doing well with arm - very cranky. Weepy. But managing.

Day 1229

What a difference a couple weeks can make.

I still have to get surgery -- tomorrow! -- and I'm a little uneasy but overall I'm very grateful there IS a surgery because the shoulder has stopped getting better and has in fact gotten mildly worse since last I wrote. Yes I'll be immobilized for six weeks and need to not cheat on that immobilization because tendons don't have very good blood flow and are thus slow to heal...but even if I only get a 50-75% improvement from where it is right now I'll be happy with that since where it is right now is Just Not Good At All. I'm sure there are parts of this I'm going to hate and I'm sure the road to FULL recovery will be long but I want to get started on that journey.

Meanwhile my husband is so much better that I really do see the miracle. It took every bit of two complete months but he's just like he used to be years ago...well, he doesn't have the energy level yet and we're both a lot older but he's not yellow and not swollen and it's just so amazing and wonderful. He's getting closer to normal each day and his lab values are all great and the timing couldn't be better so that now I can focus on dealing with my own injury and healing.

Good thing, too, because it was really awful there for a while. Right after the surgery it was very touch and go; I remember sitting in the ICU on Saturday July 20 watching all the blood pour into the wound evacuation container and watching them pour more in through wide-bore IVs and thinking very dispassionately "well this just isn't compatible with life. We can do this 24, maybe 48 hours but then he's gonna start dropping off organ systems."  Praise be the second-look operation that afternoon showed and fixed a bleeding blood vessel.  Only now can I even start remembering those early awful hours---I remember Eldest wanting to drive out on that Saturday during the day and using every single calm rational argument I could use to get her NOT to come till at least Sunday. I was soothing, I was kind, I was loving....and I was scared to death he might die when she was there at the hospital three hours from home, she'd break down completely and I'd have an extra car to deal with and not know how to get it or her back home again. Total soldier mode. Fortunately on Sunday when there was no stopping her coming by any means necessary he had turned that immediate corner.

But now it's settling down to pretty much normal. He still uses the stair lift but not -every- time and has commented on how he will know he's totally back to baseline again when he can call the company to have it removed. Because I was on the phone with my pre-op nurse early last Thursday morning he drove himself to his lab draw---I came downstairs after the call, wondered where he was and then went outside to see him just putting the car in gear.  I hopped into the passenger side, pajamas and all, to ride along and he did just fine. Decided to have me drive the six miles home again after the lab draws but hey, he did it.

I'm actually at work right now -- I stopped in yesterday and today to sign things and make an appearance before I get the Big Arm Sling. That's been good too as I was surprised and a little touched by how many people had missed me and how glad everyone was to have me back. Heartwarming.

I really don't know how I could have done all the things that had to be done this past  year if I had still been drinking. Badly, that's how.  Showing up hungover all the time and half-drunk sometimes, probably....no driving needed and there was a liquor store within walking distance. Back in 2002 I did hospice care for beloved Grandmom about half-lit about three-quarters of the time and although I held it together the way that we overdrinkers do I look back and see that I was making it harder on myself that way even though at the time I thought I -needed- it like medicine. Nah. Having done major healthcare stuff and other major stuff both while drinking and while sober I can say with complete assurance that majorly bad stuff is STILL better as a non-drinker. It's bad, but at least you can be there to deal with it and be there for the other people who are dealing with it.

I know a couple people in the really early stages of sobriety -- under a month to right at a month -- and I know it seems like one will never ever get out of that "this is really hard and awful" stage and sometimes it's just a challenge to get through each day but it DOES get better if you stick with it.  I had my back to the wall and felt really bottomed-out and awful a couple weeks ago with my husband's illness: we were at home finally but he was still just SO sick and weak and couldn't do -anything-  and we had visiting nurses all the time and had to make that drive every week and he had a wound-vac machine and I remember going around for at least three days in a row maybe more thinking "yeah we saved his life but this is NOT a whole lot better; this SUCKS this does and it's HARD and what are we even doing here and if this is how it's gonna be this is AWFUL and did we really do ourselves any favors here...." and if you pluck "we saved his life" out of that rant and replace it with "I quit drinking" it feels really familiar!!  Y'know what?  I rode it out and it got a lot better. Like a LOT-lot.

I'm keeping that in mind for my post-op state starting tomorrow.

Day 1211

The past three days I’ve walked up with my shoulder really sore...and now I know why. From the MRI report:

“The supraspinatus tendon is torn. This is a full-thickness complete

tear with tendon fragments approximately 8.5 mm avulsed from the foot

process on the greater tuberosity.”

Even I, who am out of direct patient care entirely, know that “full thickness complete tear” needs surgery. I’m trying really hard to get to “but this means you -won’t- have a permanently messed up arm” but I’ve stalled out at rage and anger. Over the pain, over the hassle of having to schedule and do a surgery, over recovery time...

...and over the inherent unfairness of it all. Naive perhaps but still very real. 

On the other hand, the Universe cushioned me a little bit for the blow: yesterday out of the blue I got an Amazon package which turned out to be my friend from high school sending me the new Stephen King book I didn’t even know was out. Complete surprise and a delightful one. 

Day 1207

This bum shoulder just colors everything a little bitter. I thought maybe it was just me and my own skewed perceptions but both kids have asked me several times if I were mad or, more commonly "what are you mad about?" when I don't -think- I'm mad at all. That's probably pain or fatigue from pain.

I am well aware that in many =many= versions of this story the old woman doesn't get any or enough treatment for the arm and it stays bum for years and is constantly Something to be Endured. So I'm grateful to be having the MRI tomorrow afternoon and grateful to be able to do as much as I am doing -- which is pretty much everything a little till the pain makes me stop.

The problem is that driving is painful. Not the steering wheel part or I'd stop even going the five miles into town (well, maybe not; too useful) but the radio and heater and other dash stuff are at the wrong angle. It hurts to mess with them. Stirring things hurts. Typing or mousing don't hurt much at the time but make it ache later...but I just now a couple days ago got My! Own! Computer! back so I'm going to be typing and mousing anyhow.

It's all so tiring. On the other hand, his liver numbers are absolutely fantastic. Everything is shaping up nicely from that viewpoint and I can see good progress from when we first came home. Still a long way to go but considering where we started it's pretty amazing.  Doesn't feel like it at all since we're living through it and it's still A Real Lot...but when one stops to think about it we've come an incredible way.

Which I suppose is why the big mess I'm having around food isn't entirely unexpected. I may or may not have mentioned buying a bag of Keebler Iced Animal Crackers which was how I knew I was just bottomed out, PTSD/adapting-to-change/maybe-depression wise...because I never buy them as I know I'll eat the whole sugary bag in a matter of two or at most three days. Well not only that but then I saw these "oh wow don't THOSE look interesting?" caramel cornflake cookie-type things at the Good Grocery and got them...and I've been doing a whole lot of nibbling that I don't need to be doing and the whole food thing is going completely to hell.
  
The trouble is that I still have all the issues in my life and relationships that pissed me off before the transplant and now not only is the main way they were working out (him and Eldest in NJ) not in play but now also I've had a frail sick old man. Getting less so, but still. With a bum arm. And the food is all tied to body image crap and sick/well crap that started in freaking preschool with my crazy anorexic Munchhausens mother and that ties into desire and desirability and that circles round to the relationships again and it was a lot easier with booze since one can -stop- booze but ya gotta fucking eat. Ya know? I had things in a really good place up until he got freaking sick and then it was okay for a while and then the whole freaking Hospital Event happened and now I’m right back to eating sweets like a drug. 

Well...it’s been worse but this ain’t great. But the iced animal crackers and caramel-cornflakes cookies are all gone so that’s a start. And I know not to buy stuff with maltodextrin high up on the ingredient list so I will not be standing in front of the cupboard pouring Molly McButter into my hand, eating it and repeating. That was way long ago back in high school but that whole "I have to at least _taste_ everything" for some deep unsettling impossible-to-name reason has been back like crazy lately. Gotta get a grip on it. 

I should cut myself a break -- not only is there Big Change here in the house now but I had two whole months of Somebody Else's Food Prep all the time and that's big. I had forgotten how little I care for just-myself-cooking and likewise forgotten that when one does take the time it's better. I had still eaten really well because there were a lot of easy healthy choices at the hospital cafeteria...but totally got out of the whole How To Food thing and that's just not a good place for me. 

I'm hoping by writing about it I can start coming to terms with it and getting to a better place.

Day 1200

Well hey! I got here! Wow!

I mean yeah who knew life would have gone so wild...but “against a background of sober” makes everything so much better. Easier, by far.

Day 1190 (I got a counter app)

Today when I woke up I finally- for the first time in weeks - felt like life was do-able. Like things might eventually be okay again.

Yesterday was his first clinic visit. Lab numbers all going in the right direction; that’s the biggest thing. They seemed to be impressed with how well he was doing. They also swapped us to aWednesday afternoon slot which is way more do-able - leaving the house at 9:30-10 instead of 5-5:30 is much better, especially as our son is still doing the driving. We will be able to get the twice-weekly labs on Mondays and Thursdays at the local hospital so that’s easier too.

My ortho visit this morning went well - they gave me a new sling though I’m only supposed to wear it at night...okay, they said  “wean” myself out of it big I decided that “wean” was “just stop.” They told me to do pendulums and wall crawls which are both do-able.  The PA ordered an MRI but most importantly she completed all the forms I needed. I go back for another visit sometime after the MRI.

It was a beautiful day, weather wise so I was happy to be out in town running some errands. It really does finally seem like things will be okay eventually.

Three Years Three Months

Home. Lying in my own new room staring at the glow-stars Eldest added years ago. Two beloved beagles at my feet. He has the master suite and renewed bodily autonomy. Powerful restorative stuff.

What a lovely soberversary present. 

1186 Days (3 years, 2 months 30 days)

Sorry I haven’t checked in - life happening awfully fast plus the dislocated dominant arm thing.

It goes well: he gets discharged today! Well, possibly tomorrow but definitely one or the other. Then it’s learning a whole new way of life but he GETS a new life which is really wonderful.

I wish I were less tired so I could feel more of the wonder.

I had my own ortho follow up last week. Was exceptionally cookbook: check in, get Xrays, get roomed, see NP. I have to still sleep in the sling till my follow up visit — which isn’t for -four-weeks- (and was scheduled here but can be transferred -home- now praise be!) but I can start “weaning” myself from the sling during the day whatever that means, exactly...mostly I’ve been sitting quietly with it off a couple times a day.  I have PT exercises to do theoretically twice a day but in practice only once because they make me ache afterwards and then I’m not much good as a caregiver.

Oh and I can’t drive till my next visit which at first I thought was mostly for my protection because if you have an accident while in a sling the insurance company will likely try not to pay...but now after living with this injury for 17 days I realize I still have no business trying to drive no matter how strong I think I am.

This has all been a huge experience in so many ways. I’m so glad I had the foundation of long term sobriety before I started.

Three years, two months, two-plus weeks

It’s been something.

Last Friday afternoon I had gone to the families-of-Transplants house for a break and to get tea for Hubby and on my way out one second I was walking down the driveway and the next I was flying through the air. Landed on my right arm outstretched over my head and it hurt sufficiently that I thought “oh hell I’ve broken something again” but my first emotion was annoyance more than  anything else. But then when I tried to stand I literally -could-not- get up due to terrible dizziness. Couldn’t get past a sitting position without the world closing in....was terrified that “oh no, this injury on top of the stress of his illness has given me a heart attack.”  Called 911 from my cell phone. Fortunately I was not having a heart attack — it was just shock causing low blood pressure 82/47. Responded to fluids.

The pain started out at maybe 6-7 but then became extreme — while I was in the ER waiting for meds I used every breathing technique I learned for labor plus chanting prayer. Had not had agony like that since labor with my firstborn 25 years ago. Really awful. Dislocation with small associated fracture. But once I got medicated they managed to pop it back smoothly...and by “medicated” I mean more drugs than I’d ever had before in my life: 1 milligram of Dilaudid, 5mg Valium and then Novocain in the joint itself plus 50 micrograms of Fentanyl for the actual relocation.

Praise be it wasn’t worse. Of all the fractures I’ve had, this one is the most painful but the least incapacitating. It wasn’t a leg so I can still walk and as long as my arm is in the sling I can use the hand, wrist and elbow. Can’t lift the arm at all and taking a shower is still pretty humbling but overall it could have been so -very- much worse. Praise be.

Praise be for cellphones too as that’s how Hubby found out what happened and that’s how he called our son to come out and stay with us.  Son went home yesterday morning but Eldest is bringing him back this afternoon, visiting briefly then going back home herself tomorrow morning(thus leaving only one vehicle here in Rochester.) This is good because the team is talking discharge Monday. Bilirubin is 4-5 and trending down, liver enzymes are great and although creatinine is still 3.6 it is trending down and he’s making good urine. Blake drain got removed during yesterday’s wound-vac change and the wound being vacced is overall smaller.

They -were- talking about discharge to the fifth-floor short-term rehab unit but he is flat-out not willing to do that because he is completely unable to eat the food here. The issue is the stairs in/out of our house but Hubby’s  Aunt has offered use of her first-floor retirement complex apartment as long as needed so going -home- home is now the plan. 

We just got a stair lift installed today and plan to get a ramp for the front and bannisters for the back ASAP so we are all hoping the time at Aunties will be quite brief...but we are very grateful to have that option as there would have been an ugly confrontation otherwise. It was almost confrontational anyway — Physical Med doc who runs the rehab unit came down and said he was okay with Hubby going home if PT cleared it and PT knew about our plans...but then the surgical team breezed in and the first words out of the attending’s mouth were “so you will be going to the rehab floor...” which didn’t go very well. Got it resolved but it wasn’t a terribly pleasant morning. I was really dreading having to have the “no, it will be either discharge to home or discharge AMA as he simply is not going to GO to the rehab unit.” Fortunately we didn’t have to go there at all. 

Meanwhile my arm steadily improves. I figure it can’t be that bad if ortho didn’t want to see me till 12 days after the original injury...which is what they said when I called on Monday. The PT people who see Hubby said using the fingers, wrist and elbow while close to the body was fine so I have just kept it in the sling as instructed and let pain be my guide. I am deliberately staying on q6 Tylenol - regular not extra strength - but only took my first Oxy 5 of the day at 1pm. I found out the hard way that I tend to ignore pain till I get mean and/or weepy which are neither one at all useful so I’m staying on top of it. Sleeping in the recliner chair bedside is actually as easy in the sling as the bed in the little house so no issues there.

We are managing. Despite everything I am still hugely grateful not just for my husband’s new life but also for the incredible personal growth this experience has brought. My ER experience, though not pleasant, was very memorable. I’m also grateful for the family, for my considerate employer, for the entire healthcare team..for so many things. 

Three Years, Two Months, A Week and A Day

He was transferred out of the ICU back to the sound organ transplant ward on Sunday afternoon around 4pm. Got off telemetry yesterday. Getting IV meds switched over to PO. Still needs two people to help get him out of bed and into a chair but it gets less hard each time. 

I slept at the for-families house last night we and that was wonderful. Shower, laundry...and sound asleep before midnight. He seemed to sleep well also - till about 4:30 anyhow which is when his first text of the morning woke me because I had the phone right by my head.

He is still incredibly weak so there is still a long way to go but my son said “the climax seems to be over and we are in a long denouement right now” and that -is- a good way to put it. Now that we are on POD #11 we seem to have weathered the storm.

Just now he said “everyone on this floor is super nice...but I wanna go home.”  He hasn’t been healthy enough to say that for a -month-! I burst into tears of joy.

I also made him a calendar of the events in July as he still has a lot of immediate-term memory loss.

But it’s all just so overall good!  

I’m holding up really well and I am certain sobriety is the foundation for it all. 

Three years, two months, four days.

Hubby just came off the ventilator this morning. All healing is going as planned.

I am so grateful. Too much to even speak so I’ll share a things which happened yesterday:

In the elevator a complete stranger wearing a “though she be but little she is fierce” t shirt showed me a newborn on her cellphone. Put an already good morning over the top.

Not just the baby and her joy but that I look like the kind of person one can approach like that.

They were playing Fleetwood Mac’s “don’t stop thinking about tomorrow” in the cafeteria just now — appropriate.

Be well, all

7/19/19

He has a new liver. Surgery was all day today. I saw him briefly in ICU and he’s got more tubes than any Borg but was warm and by report is doing as well as can be expected.

There are just not enough words to express my gratitude, thankfulness and praise.

Will maybe share more of the story if/when time permits but I’m not sure the details matter. It’s just such a miraculous and awesome thing.

Gratitude thanks and praise, now and for always.

Three Years, One Month, Three Weeks and a Day

Weekends in the hospital are usually a holding pattern. That means we are most likely still sitting on the same decision point: heart strong enough for a transplant vs home with hospice. We can deal with either choice but it will be nice to know which. It’s not so nice to be starting our second week in the Big Medical Center Three Hours From Home but life is full of unpleasant situations.

Thought I’d write about some things for which I am grateful.

First and biggest: my sobriety. I can’t even imagine trying to do this wife/advocate thing while still being a drinking person. Either I’d be finding excuses to sneak away and get a drink or I’d be stuck in that white-knuckle “I’m so Not Drinking” state and both would be awful not just because I couldn’t be present in the right way for him but also because of the terrible shame spiral. Husband with end-stage liver disease and wife has to down a shot or four of vodka? Would make me feel not just like dog shit but really nasty ate-something-it-shouldn’t dog shit. So that’s huge. Just huge. I am grateful I got sober. Always and forever I am grateful I got sober...especially now.

I am grateful he didn’t die back in April during the first only-four-day hospital admission. Even if he dies tomorrow we will still have had two months I wasn’t sure we’d get.

I am grateful I turned out to be emotionally strong. Resilient. It’s not that I’m killing myself trying -not- to break down in tears or rage; it’s that I genuinely don’t feel the urge. Probably this has to do with my baseline personality -and- long-term sobriety. Taking away the booze takes away the really jagged fast high/low emotional peaks and valleys in favor of a more gentle wave and then it turns out I’m pretty stable on my own...and I’m grateful.

I am grateful we have a good family who can all rally around to help. We don’t have to worry about either house or the critters because the kids have those bases covered. We don’t have to worry about brother-in-law because my mother-in-law is still not just able, but happy and eager, to keep him in her apartment for as long as it takes. Having that kind of backup support is heartwarming in addition to gratifying.

I am grateful my workplace is so understanding. “Take all the time you need” has been the universal response. This is hugely helpful.

I am grateful that over the past year or so I’ve developed a spiritual practice which gives me comfort and strength.

I am grateful for a strong network of friends and acquaintances- that includes you fine blogfriends - who are there to help hold me up and listen to me.

I am grateful this hospital has enough money. Mine doesn’t and the differences are apparent everywhere from the cheerfulness of the staff to the really nice ice in the cafeteria.

Speaking of which...I am grateful for such a nice cafeteria with so many good vegetarian choices. They even stock my favorite teabags (Bigelow raspberry.) The quality and variety make this experience less lousy.

I am grateful my hairstyle- or rather lack of one - means I can sleep in a recliner, re-do my ponytail and be good to go. I’m grateful the recliner is comfy too.

I am grateful he and I keep getting more days together. He is the most interesting human I’ve ever known and we’ve had a helluva time over the past 30 years. I sure don’t want it to be over...and if it -does- have to be over I’m grateful it isn’t _today_.

Day Something

Ugh. The attending and the whole transplant team were here just now and the news is all bad.

His bleeding stopped on its own but his liver disease is a lot worse - MELD score is up to 38 from 33 mostly due to his INR creeping up to 4. Since MELD only goes to 40 this is bad: MELD of 38 has an 80% three month mortality rate if not transplanted. (MELD of 33 was 50%.)

Plus the liver is causing pressure issues with the right heart so they are consulting heart/lung people today to find out what to do about that....they thought probable right heart catheterization soon and “this will be tricky because of the underlying liver disease” so he could die on the table from -that- even before we get to transplant. All of this is depressing and scary.  

The attending talked like we will be staying here till after the actual transplant because “you are very sick and I do not want you to leave and have something happen that will jeopardize your ability to -get- a transplant.”  Apparently his actual lab numbers are a lot worse than his clinical presentation. (On the other hand, that statement means they are thinking transplant rather than hospice.)

He and I both got the strong impression that he is leaving this hospital either with a new liver or feet-first.

3 Years 2 Months and ?? Days.

We got transferred to Big Medical Center on Friday night and everything got so much better. I hate admitting it but my own hospital’s inpatient medicine team was just...not as strong and sharp as it might have been. Plus the different in finances is apparent at every turn. So just being a sick person here is a better experience.

His bleeding slowed on its own with blood and medicine so that’s good. Still with MELD score of 34 but that is to be expected. He had a tagged red cell study yesterday which indicated the bleeding was in the distal small bowel so that was progress. But the small bowel is tough to get to.

The plan: colonoscopy and “capsule camera” tomorrow to find out what to do next. He just signed consents and swallowed a “scout capsule” which is an x-ray-visible sugar pill the same size/shape as the capsule camera to make sure the bowel is open and the real camera will pass properly. Then bowel prep tonight and an x-ray at midnight to make sure the capsule went where it should. Then tomorrow the tests. Then we use the results of those tests to
find out what to do next.

Otherwise he is still doing a little better each day. Held onto his hematocrit so no more blood, creatinine still steady and he’s _off_ fluid restrictions hooray.

The new -attending- hepatologist is nice but his fellow, who runs the show, is dweeby. Hubby is fine with him but I don’t care much for him.

So far, so good. Of course the test results could all be absolutely awful - like a tumor - but for now we are okay.

I’m remembering to eat and drink and the recliner in the room is comfy enough. My current game plan is to stay distracted (good stuff on iPhone Kindle app) since worrying ain’t gonna do a damned bit of good. Wait for more data. I’ve known all along that “and then he dies” is on the table so it’s not like I’m in denial, just taking it a step at a time. “And then he gets a new liver and a whole new life” is -also- on the table. Holding both of those side by side in my head is too hard so best to just see what the Next Thing is.

Also....it really could be just so much worse. So I’m grateful we have come this far.

3 Years, 1 Month, 10 Days

(Give or take a day, maybe.)

It’s been a while, sober-friends.

Gosh I just looked and it’s an even longer while than I thought: we had only just got back from the transplant meet/greet.

Well the past month has been an adventure. That same week I last wrote, we killed ourselves getting his potassium high enough to do the stress echo on that Friday and then we found out the following week that it wasn’t the right kind of stress echo and his heart rate didn’t go high enough so that has to be repeated and it was scheduled for this Friday the 5th..,

...but he got admitted again yesterday. This time for bleeding. We had been going along pretty well and doing all the things the transplant team told us to do, including weekly labs. The older two kids drive his car up from New Jersey last week so he drove -himself- to his standing Thursday lab draw. Friday the nurse called and asked that he get another set of labs on Monday — that piqued my curiosity because it meant “acute change” and probably wasn’t good. On Saturday morning the labs posted to MyChart and I saw the issue: in a week his hemoglobin had dropped from 9.3 to 8.5 and his white count had bumped a bit. So fine, watch and wait. He had complained of diarrhea and how that was causing increasing blood in his stool but he still thought it was all from his hemorrhoids and no big deal. Plus on Friday the dentist who was clearing him for transplant did a “deep cleaning” which made him bleed like crazy.

But Saturday he got worse and Sunday he was -super- exhausted and said he had more bloody stool so I called the transplant team and they agreed he should go to the ER yesterday which he did...

...and now he’s admitted to my hospital with a hemoglobin of 6.1 which only bumped to 6.4 after two units of blood. Dropping from 8.5 to 6.1 in 4 days is pretty impressive but he’s been here almost 24 hours and they still haven’t figured out what is bleeding or how to stop it. Frustrating. I’m guessing that whatever is causing the “CEA 14.6” thing I mentioned last post is what’s bleeding but it just seems so long to be getting it sorted out. I’m assuming he’s got colon cancer and braced for it to be worse than just superficial malignant transformation of a polyp. That would be the best, of course, and if there were big ugly matted lymph nodes those would have showed up on the CT scan and/or MRI he got in April but it still could be anything in between the two. I’m assuming he’s gonna have to have a colon surgery and hoping like hell my guys don’t mess up anything and can pull him through, bleeding risk and all.

But we aren’t even there yet; we are still just pumping him full of blood and fluids. And after getting special dispensation to stay over (visiting hours are 9a - 9p) I’m exhausted. Had a quick trip home for shower/change but now I’m back and waiting for the docs to round so I can find out what the plan for the day will be. He’s finally sleeping so I’d love to duck over to my office for a while but then I will miss the plan. Healthcare is frustrating.

-later-

Turns out he -does- have C Diff. Also all his numbers are getting worse not better. Plan today is new IV and if not then central line. CT scan of belly. Plasma and vitamin K to lower INR. If things keep getting worse then transfer to Rochester. This is all scary and awful.  And yeah, chance of death is very high.

I have never been stretched as thin as I am right now. Fortunately I was smart enough to get off the emotional rollercoaster drinking causes -before- all this went down and I am so glad. I just don’t know how I would have managed any of this if I had still been drinking.  At least now I can focus on “what’s the next thing I have to do?” and “how can I -not- have an emotional breakdown?”

In sobriety I developed a deeply personal but meaningful spiritual practice so that helps but hardly enough.

3 years + 15 days (also D-Day)

Oh soberverse, things are not great in SamLand.

We have returned from the two-day meet-n-greet at the transplant center. It was daunting.

First was the drive to Big City: two hours forty five minutes which mean some people say it's two-and-a-half hours and some say it's three....I say three.  Easy-peasy driving and the Big City doesn't have bad traffic but still that having-to-drive thing makes it momentous and heavy right from the start. We checked into the Nice Downtown Hotel and discovered their room service to be quite suboptimal...I know, totally the most minor of minor problems but Spouse - whose mother was in the international airline industry for an entire career including the sparkling yuppie Eighties - has a big fondness for room service. Also we had shown up too early in the afternoon and were both bored stiff but too tired and nervous to seek out entertainment so not an auspicious start.

First day was very long. He got a ton of blood drawn and then we had a PowerPoint presentation and met with various people in an exam room all morning. While at lunch they called because his potassium was too low to do the dobutamine stress echo which was scheduled for early afternoon so we stopped at the pharmacy instead of the heart center. We rescheduled the stress test here at home  for this Friday as in tomorrow.  He also has to get a colonoscopy (as part of "routine health maintenance - women have to get mammogram and Pap smear too) and to get dental clearance. We have a dentist very close by and she usually has excellent availability so that one should be easy. Appointment with his new gatekeeper/coordinator primary care doc is the 18th — two weeks from today. She can coordinate local care as our local GI doc isn’t available till first week of August.

It was a -lot- to take in...and I discovered that I seem to have Big Emotional Issues about being on the patient side of healthcare and about being in Big Medical Center. Got really increasingly stressed/anxious/angry and it all started resolving literally -as- we left the parking garage. There’s no doubt enough stuff there to unpack for days as I feel like some of my mother’s big issues with “sick” are mixed in along with med school stuff as I felt totally judged and like everyone thought I was crazy or awful or both.  Yes, I am totally serious. I agree it’s totally out of character but there you go. 

Spouse seems to be doing well with all of this - possibly better than I am. He agrees it is pretty daunting but do-able. After being put On The List (for transplant) one gets weekly labs and has to be ready to go at a moment’s notice. It’s the aftercare which gets hard—10-14 days inpatient then a visit three days later and then in 7-10 days and monthly visits for the first year. Lot of driving. Lot. Of. Driving. 

And although by all right I should love Big City--okay, fine, it's Rochester NY -- I just don’t. Back when I worked there every so often I’d meet someone who clearly didn’t like Philly but when pressed had no specific or even tangible reason at all — now I know what they meant. I think Rochester has lovely architecture with many - heck , most - houses -totally- my jam...and yet everything just feels weird and wrong in ways it seems crazy to even try to articulate. Odd. But I’ll learn to live with it.

We were too overwhelmed by the day’s events to seek out anything other than candy and horizontal :-).By the way...Hershey's Crunchers -- come in a bag?  -- deadly-good.

Second day.  Just meet with the actual physicians then leave from the hospital. Easier. Labs back.

MELD score of 34 which kind of expected. That's the number they use to quantify/stratify how likely you are to die of liver failure and how soon. In state of NY you don't really qualify for transplant till you hit 30 but the scale only goes to 40 so there's not a huge lot of wiggle-room. I had known his MELD was 34 when he was hospitalized but had naively hoped it would/had improved since out. Apparently not. So that was shocking enough to me.

BUT

His CEA value was 14.6 when normal is 3 or less.

Cirrhosis does raise CEA but not above ten. CEA above 10 is colon cancer till proven otherwise. Always. I am hoping it is early-stage: a polyp that just turned superficially malignant. Spouse himself is fairly confident that’s the case as “no cancer of any kind anywhere in my family” and also "the CT and the MRI didn't show anything" but 1) If you didn't do a bowel prep the CT and MRI would -not- show anything; they don't read for specific findings there as only the biggest things will show, 2) his father was adopted so all bets off there and 3) being in the specialty I’m in I can scare myself but good with “and that one patient...” stories. I know early-stage no-nodes cancer where surgery is curative is totally not a contraindication once fixed but the surgery is still no cakewalk and might have to be at Big Medical Center depending on how our anesthesiologists feel about doing him. I know at least one of our surgeons would be willing and she's slow but good so I'd be fine with that but I'm not sure our anesthesiologists will want to have that much scary-to-manage-sick-patient. The colonoscopy is going to have to be done in the OR vs the GI suite because of his underlying liver disease so I guess we will get a trial run/sense of things then.

I’m holding onto the mental video of the two post-transplant volunteers we met who looked and acted -great-.  If he can get through the surgery it’s a whole new life but that is definitely an if not a when.

Also I have been stunned by how hard I'm taking being SO tied to the healthcare system. Rochester wants to see us back in a month regardless of what happens but even in best-case scenario once you are On The List you have to get weekly labs and stay the hell put wherever "home" is because they could call you any time day or night and say "this is it; we have a liver." That's intense. So basically we are arranging things so that he takes a week to go down and tie up all the NJ things he needs to tie up (and get his dog another visit with the vet we all love down there) then he will be up here till further notice.

So that's how I am. There's just SO much to  I've been treating all of these pieces of data like clothing in a whole brand-new closet which is very overwhelming and stuffy and some of the garments are really oppressively heavy when I have to put them on and wear them so I try to make sure to leave as much clothing on the hangers when I can.  Like now, sharing with all you fine people. I'm taking care of myself as best I can and have a support system of friends and all....but this is still Really Hard.  And it's gonna keep being Really Hard for the foreseeable future.

Three Years and Thirteen Days

We are in the Nice Hotel in the Big City because all day tomorrow and half of Wednesday will be taken up by classes and meetings to get started down the liver transplant path. We have a suite and it’s a very nice room with dual zone climate control (key) but the in-hotel food choices aren’t great and historic part of Big City doesn’t offer much in the way of little shops or cafes. I found one that might do for tomorrow though which is enough. It’s a curious mix of anxiety and boredom.

Which, I suppose, beats the resentment and annoyance I’ve had going since Memorial Day weekend. I’m getting all the things done which need to be done and I’m being decent to everyone but it is really wearing thin. Eldest is still fairly high maintenance dramatic and MiL is playing emotional games in spite of knee surgery and the youngest dog had an escape on Saturday and nearly got clobbered by a car and got carried back up the hill because I took off after him without a leash and...

...I’m tired of all of it. Just ridiculously emotionally fed up. It’s not fair, hasn’t been fair, will never be fair...and that’s just the way it is. Not to worry — im still finding small joys here and there — but overall I’m just not real thrilled with life right now. There’s definitely room for improvement. Sure it could be -hugely- worse and I’m grateful it isn’t...but still.

Plus we really have no idea what to expect tomorrow and it’s a source of worry and anxiety.

Back to trying to distract myself.

Three Years Plus One Day

Yesterday was totally not exciting...and that was just fine.

I did exactly what I had told Spouse and Youngest I planned to do: come home, mop the family room floor, eat something, take a shower and do my laundry.  After that I went to bed early.

I did, however, get my new Injinji toe-socks last night and I'm wearing a pair today and both pairs will definitely end up being my "three year sober socks" so that's nice.

What's gone is a lot of heartache: did I get enough chores done before I started drinking, can I have that last drink and still remember to move my laundry over, I need extra because I'm resentful about the floor...you know how it goes.  Getting rid of alcohol doesn't change any of the rest of life but it makes the rest of life so much easier to manage...and that's huge.

It does mean that you have to feel all your feelings, which even now after three years sometimes sucks but you get a lot better at figuring out what to do with feelings once they show up and that's a pretty cool thing. I have grown so much more as a person.

As I have told my kids...it took quite a few months for the really good stuff to start kicking in - a lot longer than I thought it would, actually - but now that I'm here I wish I'd done it a whole lot sooner. Like -years- sooner.  But it's never too late to start.

Hey This Is It: Three Years

I don’t have a thing planned for today but I’ve been up about twenty minutes and just realized so I thought I’d share.

Life has been coming at me hard but being sober is a huge solid foundation on which to build.

Eventually things will slow down and I’ll write a catch-up post but I don’t think today is that day.

Remember: it really is worth it. Totally.

Day Three Years Is Only Eight Days Away

And boy has it been a busy three years or what? I'm starting to catch my breath, finally, I  think. This will be a big long Update Post and then maybe I'll move back into more Thoughts&Feelings Posts...we shall see.  It's all an adventure, y'know? 

Two weeks ago I finally FINALLY stopped having low calcium symptoms entirely and fell into a convenient two-in-the-morning/two-at-night Citrical routine which seems to have worked because last week I got my two-month-post-op labs a full ten days early and they were fine -- parathyroid hormone, calcium and ionized calcium all squarely in the middle of the bell curve.  So that's done.  Just in time for me to see my sweet but ditzy FP in follow-up this Thursday. The scar itself is nothing - just a short curvy maroon line across the center of my neck and the maroon part is fading with time. 

As for emotions...I've decided I must be just as strong as everyone has been telling me through the years because I have been through a LOT and still seem to be doing okay. The nature of my job means that I'm sitting alone in my office most of the day so I have time for self-reflection and I think I'm getting back to a reasonable baseline. Having everything "set for now" is a good feeling too: Spouse and I go to Big Medical Center (3.5 hours west of us)  the first week of June for two back-to-back days of appointments with "the team" on Tuesday June 4 and Wednesday June 5 -- I'm taking the whole week as FMLA so we have time afterwards to get situated. Then Tuesday June 18 at 1 pm he has an appointment with his new primary care physician so that loop is closed. 

Youngest Duckling is working her same summer job as last year and started yesterday -- that's good too. She's going to see her boyfriend in Minneapolis (for the second time ever - they met through an online gaming guild months ago) the weekend of June 14/15/16 --- well actually she's flying out the night of Thursday the 13 because he can't get any part of Thursday off but is taking the Friday. They're hoping to do more stuff in/around Minneapolis since the weather will be better this time.  She's considering switching majors from Biology to Medical Technology so she can join the shortage profession of lab techs because it means she could be highly employable anywhere in the country.  However our local college, to which she is commuting from home, doesn't offer that degree so she may end up switching schools at the end of next year....big question is whether she switches to a school in/around Minneapolis or whether there is a school with a lab-tech degree close enough to here that she could still commute. That's all stuff to consider over the summer though, no particular rush.  Spouse commented yesterday that the Mary Tyler Moore theme song really _does_ fit her and seems okay with her having these big adventures, which does my heart good as he was so very protective of Eldest Duckling but again....they are completely different kids. 

Meanwhile Eldest Duckling is really loving her cashier's job at the local deli and that's giving her a lot of self-esteem and sense of purpose.  She has finally mastered the lottery machine!  I can hear the personality disorder creeping in at the edges of her voice now and then but she's staying sober and staying busy and both of those, along with Cymbalta, seem to be keeping her sane enough to stop going to any -new- healthcare appointments and start paying off the bills for the ones she already racked up. She and her husband dyed their hair coordinating shades of totally not-natural red over the weekend and although I'm totally fine with them doing it because everyone should wear their hair however they like, full stop, I think it's not a wise move because SiL is in the middle of several job interviews for stuff better than his current position as cashier at the local liquor store (yeah, I know, right?) and a shock of bright-red hair isn't going to be a deal-killer but if he's standing next to another equally qualified applicant I suspect the one with normal hair color will have a slight edge.  I'm just grateful Eldest waited till AFTER she went on campus to set back up for fall classes. In any case they look like the opening scene of the newest X-Men movie or something along those lines.

Middle Duckling graduated and is planning to move to NJ this coming Saturday. I find myself feeling quietly gut-punched about that and am trying really hard just to carry on as if nothing is wrong for two reasons. First, I -want- him to go to NJ because there are way better job opportunities there. If he doesn't want to work for the local healthcare system, probably in the IT or phone departments, then there really isn't much for him in this whole area but down there he's got all of Philadelphia at his disposal.  Also, secondly, I did NOT feel this way when Eldest got ready to move and moved out and I feel -terrible- as a parent for the difference. I realize one has separate relationships with each kid and Middle's relationship with me was never as full of conflict as Eldest's and mine but still, it feels really awkward to be already mourning the loss of my son when I was all for getting my oldest daughter out the door sooner rather than later. 

In any case, I took him to Mens Wearhouse yesterday and got him totally tricked out for business wear thanks to a very generous BOGO offer.  We had planned to buy one suit, two shirts two ties, shoes and belt...ended up with two suits, four shirts, four ties, two pairs pants and two belts. I figured he'd go with basic black but he chose a royal blue Tommy Hilfiger and a lighter-end-of-charcoal gray Calvin Klein.  Looked sharp, too, just like the ZZ Top song. FYI he's a 38 short, off the rack, with a 16" dress shirt, both slim cut, and size 9 good dress shoes (he's usually a 10.)  So that was all good. 

So as mentioned, this coming Saturday my son will load up his car and drive to the NJ house to stay...but Spouse and I are also going down in my car so that _Spouse_ can stay a week as well. I think I may have mentioned this in passing earlier and if so I definitely mentioned how much, at the time we first started floating the idea, I was dead-set against it ...but as I may have predicted at the time, I softened. Spouse's health has improved enough that I'm not so scared to let him out of my sight/influence any more and it -does- make sense for him to be there not just to smooth the sibling transition but also to appropriately "wrap up" his stuff in the NJ house.  He was still SO sick when we left to come "home" that he didn't do a lot of household electronics maintenance he wanted to do.  So I'm okay with the visit since after this one-week visit he doesn't plan to be back down to NJ till after whatever happens via transplant has happened. I'll go down on Memorial Day weekend to fetch him and his two dogs back up. 

As for Spouse and his own health, the Lasix -finally- got off the extra fluid from the hospital so he is much much more comfortable and although he's still got the bad lower-extremity edema he had before the admission, all the other edema has resolved and doesn't seem to be re-accumulating.  His energy level improves with each passing day and I know it to be true because he's going up and down the stairs to get his own meals more and more. He's frankly been pushing himself a bit hard but I can't complain since I know I'd be doing the same thing in his situation....and I didn't even grow up with a mother who saw every illness in a child as just one big overwhelming inconvenience and treated them accordingly.  

Speaking of my MiL....she has had some sort of life-changing experience as far as her son is concerned which is the nicest way to spin "gee, she doesn't hate me any more and it's WEIRD" which is pretty much the stunned reaction of Spouse and the rest of the family. She's _genuinely_ nice to him and after thirty years of something that was Very Much Not That it's really strange.  I mean it's a -good- strange, mind you, but still odd. We stopped by her apartment on Saturday and the excitement/happiness vibes radiating off her at having him in her recliner chair were as visible as if we were all in a cartoon strip. Odd.

"Cartoon strip" leads into my own fun/relaxation and not to worry I'm making sure I get plenty of that. I don't think I mentioned it here before but I have been doing a weekly podcast  with some online friends of mine about the Survivor television show. It's silly but has been a bright note of "a NEW kind of fun" throughout this whole recent ordeal.  We always record at 9:30 on Sunday night and  the penultimate show was last night in fact - the two hour Survivor season finale is this Wednesday at 8pm.  I've also got books which I sneak-read on my iPhone Kindle app all the time.  I have several knitting projects but my creative energy is all going toward family and self healing right now so I haven't knit a stitch since the immediate post-hospital recovery time in New Jersey and that was mostly just to prove to myself that I still could.  It will eventually come back though. Also I am carrying around a brochure in my bag for  a work-related conference 10/23-26 in Las Vegas and have already scheduled the time off. I may not GO of course but I started telling Spouse this time LAST year that I wanted to see Las Vegas before it  became a barren wasteland due to climate change (that last is hyperbole but still) and that of course I wanted to do it the two of us but if I got a chance to go by myself I would and this may be that chance depending on how he feels about/is capable of flying in October.  We shall see.  Mostly I just like carrying around the brochure. 

I read The Great Gatsby for book club and feel rather accomplished for having done it since that's one of "the classics" LOTS of people have read or seen as a movie. 

Mostly, I've been increasingly aware of the Seventies catch-phrase "Life is what happens when you're making other plans."   So very true.

It's been hard but there's so much hope...and I remain so thankful and grateful to have what I do right at this moment. Even if it all goes kerblooey in some way tomorrow it's just so much better than it could have been.

And I think it would have been nigh impossible if I had not been sober.  That's the foundation on which everything else has been built.  Sturdy.  Like rock. 

Day [(3 years) - (11 days)] Friday

Things are settling down a bit - Spouse seems to truly be back to baseline, I have all Spouse's appointments set up, I have my own labwork back and it's fine (so I'm cured, huzzah) and the kids are settled for the time being.  Now that the stress and adrenaline and excitement have started to fade I'm noticing that I'm tired. Fancy that!

Anyhow, I'm reading The Great Gatsby for book club and I don't think I'm gonna make it very far since book club is in fifteen minutes and I'm not even halfway done but I had to share this great line:

They moved with a fast crowd, all of them young and rich and wild, but she [Daisy] came out with an absolutely perfect reputation. Perhaps because she doesn't drink. It's a great advantage not to drink among hard drinking people. You can hold your tongue and, moreover, you can time any little irregularity of your own so that everybody else is so blind that they don't see or care. 

Brilliant, no?  And that was in 1922!

Happy Sober Friday, all! 

Day [(three years) - (12 days)] = A Thursday

The diuretic is finally pulling all the fluid off Spouse so he is becoming mobile again and he’s doing even better than before he went into the hospital. This gives me such gratitude and hope.

But that’s not why I’m posting. I’m posting today to share two great things about long term sobriety: never having to worry about driving and being able to tolerate sleep changes. Exemplars:

Last night around 8:15 we realized “oh hell we are completely OUT of dog treats.”  In a house with three beagles this is a situation which simply can’t last. Spouse still isn’t well enough to drive and it was the last day of finals so Middle and Youngest has shared a six-pack...but hey, no problem for ME to say “as soon as my show is over I’ll go out” then do exactly that. At 9 pm. Felt really good walking to the car, too.

This morning in the wee small hour of just past four, one of the dogs wanted to go out. In retrospect this isn’t surprising because I fell asleep hard around 10:30 so didn’t walk them at 11 like I usually do. So I walked them and went back to bed, no big deal. Back in my drinking days that would have been a HUGE calamity. I can just imagine the mental chatter “I was up puking at two and trying to drink water at three and now I gotta deal with dogs at four how COULD they?!?” and on and on and of course it would “ruin” the whole day and be part of that night’s reason for fresh alcohol....sigh.

This way is SO much better. Easier. SO much _easier_. And happier. The joy didn’t really start being super-apparent and feeding on itself till around the 8 or 9 month mark which was a lot longer than I expected but it -does- happen so keep coming back.

Sixteen Days Till 3 Years

Yes I finally did the math. May 21 is the day. It’s a Tuesday.

Have lovely comments I will answer later but had to share that even nearly 3 years along this journey it is -still- totally satisfying to wake up ready to roll first thing Sunday morning. It just is.

Peace out

Day Approaching 3 Years

Went back to work “for real” yesterday and it seemed like such a big step toward normal. Was annoyed by the same work stuff which annoyed me before - not to the same degree, though, so I guess the time away helped. Mid morning I was -really- happy in a unique way...the parts of my brain I use for pathology stuff (all nonverbal of course) has clearly missed having something to do. I wish I could have held onto that feeling all day but that’s okay. 

So here is the wrap-up version of what happened to Spouse:

Back in 2012  Spouse got acutely sick in a way I was scared might have been lymphoma: turned gray, dropped 20 lb in a couple weeks, fevers, night sweats. Workup at Prime Care then liver biopsy gave us a surprise diagnosis of cirrhosis with amazing numbers of neutrophils but at the time he had totally great numbers - MELD zero. May have had concurrent hepatitis A or –something- else because he was so acutely ill.  Anyhow, he had a background of significant childhood medical trauma (burns as a toddler, abdominal thing as preschooler, ER visits, dental traumas)  and found the workup so awful and painful that after diagnosis he said fine, will totally quit drinking but am not going back to any doctors. Which is what he did. (Well, except it was a bumpy road to sobriety as we all know.)

That worked fine for 5-6 years. Totally healthy. Two and a half years ago our oldest child moved into our NJ house to commute to law school from there and he moved in with her to provide support. (She found law school very stressful - as y'all have read more recently.) 

About a year ago he started turning yellow. He was afraid to get help because of fear that there was no help to be had: go home and get ready to die.  Couldn’t get a sustained dialogue going, plus our daughter was in school-related crisis in NJ so lots of distraction. About 6 months ago started getting bad peripheral edema. Still with fear, denial, avoidance. 

Got fever of 101+ on Saturday 4/13. Admitted to local hospital through ER - Lizzy (oldest child) stayed with him. Stayed out of actual ICU but was in the next level down with sepsis due to spontaneous bacterial peritonitis.(I drove down before sunup on Sunday 4/14.) Responded to IV antibiotics, normal saline and blood pressure support (low sodium, low platelets, systolic BP in 70s at admission) including IV albumin and weathered brief kidney crisis thought to be due to IV contrast on top of sepsis. I will forever and always be thankful and grateful to all the humans and powers that be, both seen and unseen, known and unknown, which helped him live instead of die.  Always.

Anyhow he had an amazing bounceback. No/minimal ammonia level; minimal ascites not worth tapping. Upper endoscopy showed small varices described as “not worrisome.” Discharged to NJ home Thursday 4/18. We stayed there getting him through the oral antibiotic and just generally getting his strength back – that was also pretty amazing.  As I helped him up the stairs of that house to the bedroom my joy at “we got OUT of the hospital!” was tempered by “even though I’m getting him up these stairs he may never come down them again.”  Well, not 48 hours later he managed to get down those stairs to the kitchen to feed his dog himself – had to take a two-hour nap afterwards before getting back UP the stairs and didn’t do it again that week but still.  Just wonderful.

We are now hooked into the local Transplant program and had the initial nurse phone call. Unless his discharge summary shows numbers requiring an earlier consult, we will be going to Rochester either the first or second week of June for the two-day initial get-into-the-transplant-program visit. (Picked those weeks because no worries about covering the service.) Two of our children are of compatible blood type to be Partial Living Donors and are very keen to try so the future is looking far more hopeful than it did a few weeks ago. 

Right now it’s back to work, business as usual, with him at home.  Even if it all goes kerblooey tomorrow I am so grateful to have made it this far. 

And now he's healthy enough that it's becoming tougher for both of us to hold onto our gratitude. Especially in light of having the three dogs under one roof. The combination of being back to work AND nursing him is a lot.  Everything was Pretty Much Do-Able...till on Thursday there was no denying I had a head cold. I'm almost over it now but still...that was one thing too many on an already full plate

I'm doing okay though...and "okay" is totally enough.

Day Something

It’s been a time, such a time.

April 10 I was in our NJ house celebrating 30th wedding anniversary with Spouse. Two days later, on the Friday, I drove back to NY thinking I’d get a jump on the weekend stuff.

The very next day Youngest took Spouse to the ER - he was admitted with sepsis from spontaneous bacterial peritonitis. I flew down last Sunday morning (the 14th) scared to death he’d be dead before I got there.

He wasn’t. Praise be.

Got treated, got better, came home Thursday. Been nursing him. He now officially has decompensated, not compensated, cirrhosis and is slotted into the local-to-us transplant program. Has two kids hot to do partial living donor transplant because they are compatible blood type.

It’s been really busy. Eldest got a job which started last Friday and sadly one of her two guinea pigs died the night before. She got through all of it though and I’m proud of her.

Sober is good.

Day 1036

I had to count up the days to answer an e-letter and thought I might as well throw it up as a post.  I don't think about days so much any more but I do know that May 21 is my three-year soberversary so I'm looking forward to that. 

Things here are...well, a lot more chaotic than usual.  I brought Spouse and his two dogs back up to our house over the weekend so that's the driver of the chaos. It's overall a greater good but it's gonna take a while to get used to it especially as I'm still recovering. I myself am having good days and not-so-good days.  Because I came back up to cold weather and dry air, the -inside- of my throat, where the ETT was, is still irritated and although it's not particularly sore I'm a bit hoarse...and the muscles in my neck occasionally still "twinge" but not much or for very long.  The bigger issue is the mood swings though-- apparently since the parathyroid/calcium/Vitamin D pathway is all part of the "hormonal axis" that's kind of to be expected but it took me over an hour of digging through more superficial post-op instructions to find that out and I was starting to wonder if I were having mental issues of my own.  Also the GI disturbances I've been having are part of it -- apparently the calcium/parathyroid pathway affects the pancreas in some way.  The good news is that Days 7-10 should theoretically be the worst "bottoming out" part and things should start getting better from here which is good because yesterday I was rather a weepy mess for more of the evening than I would have liked. The incision itself is small and healing well -- I took the steri-strip off Sunday night. So that's all good.

My relative in the inpatient unit is being discharged today-- that should be another overall Greater Good.  

I'm tired and more stressed than usual but it all seems do-able.  I'm sure it would NOT have seemed do-able back in my drinking days.  What's even better is that now, because I've traveled the path myself, I feel like I can actually be support for my two newly-sober relatives. That's nice. 

Been A While

I don’t know how I would have manage these past few weeks if I had still been a drinker. I’m so glad I don’t have to really even consider it.

One of my family is currently in an inpatient center to get help with personality disorder and an alcohol abuse problem and another family member is quitting alcohol on their own. I can write that now, since it is all happening, but you can imagine the few weeks before now were an explosion of dysfunction. And laundry.

I am so glad I put my own oxygen mask on first, y’know?

You can tell how much the family stuff was shaping my world — I totally forgot to tell y’all that my parathyroid surgery on Tuesday 3/19 went just fine. Flew out, had the surgery, did the post-op thing, felt good enough the night of surgery to walk a few blocks to a restaurant instead of eating hotel food, flew back the next day. It all went exactly as planned...and all ended up playing second fiddle to raging mental illness and alcohol abuse.

Yeah, I still have resentment. It’s diminishing all the time and isn’t nearly as big as other emotions like concern and compassion but I’m not gonna lie and say I’m not good and pissed that the life evenys if others have, once again, taken center stage ahead of my own. Fortunately I’m just tons better at dealing with my own emotions than I used to be and that’s a direct result of continued sobriety.

That’s not to say I’m -fine- with all of this — I’m bursting into tears on the average of three times a day - but that’s still better than drowning all the feelings with a bottle.

It is so worth it to get rid of booze. I’m able to actually -help- my family and that feels good. Also just by continuing to live as a non-drinker I’m a support person for their journeys which gives me a really warm feeling in my heart.

Still Here

Still doing my sober thing and just so grateful to BE sober so I can keep dealing with the life I’ve been handed. Lots of family stuff and yeah, my own surgery a week from today. All that and Daylight Savings Time too!

No wonder I went to bed at nine o’clock. Sleep soon I hope...but I had to touch base with my strongest best support: blogging.

It takes a long while but -good- self care gets to be just as habitual as bad routines were.

Day 1000-something

Pretty sure it’s 1011 but I’m not actually checking the calendar. I’m in our other house and it’s 6:30 in  the morning and I’m kinda hiding from my family so I thought I’d check in.

Youngest turned out to be fine, praise be, but Eldest is really struggling with law school to the point of maybe taking a semester off and part of why I’m here in this house is to take Spouse and the doggies back up to House of Chaos so there will be minimum distractions so she can make a good decision. Also because she and Spouse aren’t doing all that well with each other right now. Yes I have all kinds of feelings about all of this. 

With regard to booze I’m holding strong and doing well and just so happy to have a foundation of sobriety in my life. Even more so since alcohol is becoming a bigger player in the lives of those around me.

Food, on the other hand, hasn’t been going as well. Overall I’m in a -much- better place than I was a year ago and better than even 6 months ago but it’s not as good as it was a couple weeks ago. The weird illness of Youngest plus the bad weather had me both stress eating and using sugar like a drug and it’s been really hard to pull back from that. It’s not -huge- overeating like an entire bag/package/carton of anything in one go but it’s enough to make me feel bad about myself. Working on it.

My parathyroid surgery is in FL on March 19 and I’m all set for that including my ride to/from the airport. So that will be fixed and maybe I can start putting down bone mass again. 

Otherwise it’s been a lot of coming to terms with what my life currently IS versus what I thought it would be or might wish it to become and isn’t that true of all of us?