Wednesday, October 9, 2019

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.

Tuesday, October 1, 2019

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, 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.

Friday, September 13, 2019

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. 

Monday, September 9, 2019

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.’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.

Monday, September 2, 2019

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.

Friday, August 23, 2019

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.

Monday, August 19, 2019

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.