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.