I'm not bored....you are.

 

Chatgbt.

Too funny.

Esmei knows how to wiggle the closet doors until the magnet let's go.  I suggested something different and up higher.  This is Eric's solution.  He brought it back to the car triumphantly and said this should stop her.  Haha.  It weighs poundage. Let's hope this stops the 7lb fluffball.

Recovery mode activated.

Kai had an Endocrinologist appt this week.  The new meds are through trials and ready for him to join the program.  We signed the paperwork yesterday.  I was woken today with a call from a nurse in Ontario to go over details.  It took half an hour for the intake.  I was told it would be a shot once a week from a pen.  Nope.  Vials and syringes every day.  Oy.  

There are 68 people in Canada with BBS.  Two people in BC are on the drug.  We have now applied for funding.  The other two are funded by the BC Govt.  Here's the scary part.  It's $300,000.00 a year.  $25,000.00 a month or $822 a day!!!!

Very intimidating.

Kai is in considerably better health than his counterparts.  Pat on the back for me for keeping his weight down this far with all of the strict restrictions and monitoring we do. 

He will be closely monitored but we're told this could really be life altering for him.  Quality of life and life extention.  

We have never let him have peanuts in a shell.  The fear he would eat the shell was very real.  Our treat today was to go to Goldstream on the way home and eat our packed lunch then go outside and make a mess with peanuts.

He took it very seriously, he loved it and I'm decently sure he didn't sneak any shells in.

It's top less time.  

Lili was home vacumning her car when I came home.  She joined me for a windy cruise with tunes blaring.

In other, other news.  We're going to attempt getting Kai to wear glasses again.  Sigh.  He doesn't want them.  Jia and I hit Walmart and picked these out.  I told the salesperson he was quite likely to hide them on purpose or throw them away so I wanted them as cheap as possible for a trial pair.  The frames were $18.  I think they look pretty ok.  He is not impressed.  I took him in the next day for measurements.  The lenses were $60.  Then I took him for an ice cream cone at McDonald's.  So he got over the trauma pretty fast.  

They'll be a couple weeks so we have a slight reprieve before we attempt getting him to wear them.

Fei is finished up her term. She got the clinical placement she wanted.  Peds at Vic General.  She's doing that two days a week for a few weeks.  12 hour shifts plus the Malahat twice a day.  She will be wiped out. Ah to be young.

I'm definitely feeling better.  If I'm upright too long it gets more and more uncomfortable.  It's easy for me to over do it.  

Eric is going on a hard run in Nanaimo tomorrow.  I'm no where near ready.  So, of course, I have serious fomo.  I have lots of plans of things I could do tomorrow to find joy and fun.  Or I could settle down, hang out and sulk a bit.  We'll see how I feel tomorrow.  I hate to see perfectly good Saturdays go by with no plans.

Tuesday

 

So close.  I don't have the energy to move in just yet.  It's just super fun to stand in there.  Im hoping Eric hangs the stained glass panel in the window next.

Eric has been busier than usual.  The lawn needs mowing every four days.  The new replacement built in vacumn arrived.  It would be easy to install except we're changing the location.  He needs to cut an access hole into the glory space above the porch for the upstairs air/heat pump unit.  All while he is constantly working on Oscar.  I did ask if some of the damage on Oscar bothered him since he isn't as pretty.  He said no, he's not handsome anymore but rugged.  Haha.

Kai has an eye specialist appointment in Victoria today so Eric is taking him.  I thought I would attempt going but after much debate it was decided that the long drive plus Costco and appointment might be too much for me.  So Eric and Kai will do Costco on their own today and on Thursday when Kai has an Endocrinologist appointment I will go for that one.  It's way more complicated and I will want to see the Dr with Kai.

I did get out twice yesterday.  I went with Eric to the dump in the morning.  Wahoo.  Big day.  In the afternoon we picked up the boys and went to Service Canada.  Still sorting paperwork.  

I definitely am feeling better and having way less accidents.  It's not great.  There are issues.  The pain is still intense.  I have made it to the hot tub twice and that feels fabulous.  I'm terrified I'll poop in there.  Eric is such a hero, he says "then I'll empty it and clean it".  He just wants me to feel better.  Awe.  So far, so good.  There is slight hope for the hydro spa next week.

Rumor is that there is a candy wall at Superstore in Nanaimo.  Family outing goals.  Taking Kai to this would be soooo much fun.  

A week tomorrow.

 

Sasha and Poppy.

Cousins.

Surgery was a week tomorrow.  There is improvement daily and it gives me some hope.  At the same time, it's entirely possible too much damage was done to the sphincter muscle and this could be my new life.  So, these are very painful, scary days.

I did leave the house yesterday to drive Jia to work and Mom and I got vegan, sugar free ice cream in Cow Bay.  Then I needed Eric to lift me out of the Jeep and I had an accident in the driveway.  Sigh.  So, realistically, I'm no where near getting out and about.  Our cruise is in nine days.  I need a LOT more improvement before then.  

I'm bored but not capable of much.

Lots of screens, audio books, online shopping and I just joined the Mars fan club.  

I've been searching for family trip ideas for next Feb.  We have a 9 day window that Fei is on reading break.  We've never done a beach resort.  It's on our list of possibilities.  

Look!!

Water for camping.  I won't have to lug it around or risk spillage inside Onyx.  I have a powered pump for it.  I'm ready to get solo camping.  If only I was potty trained.  Also, my nurse, Fei, isn't so sure I should be solo right now.  Fair.  Sad, but fair.

I found flights from Bellingham to Burbank for $53.  The dream solo Disney trip likely isn't the best idea for right now.  I have too much time on my hands today.  I do have a week free in June.  Anyone want to go with me to supervise me but also leave me alone ;)  Haha.  Kidding...not kidding.

Oy.

 

Facebook memories.  Wee Sassy.

Just some extreme cuteness from puppyhood.

Yup.  Eric got struck.

The rest of us seem fine.  He lost taste but it's coming back.  He had one confusing day of not being able to taste his coffee.  We all heard about it. No fevers. He doesn't appear really sick.  He reported not feeling 'right'.

I on the other hand have entered the pain stage.  Laying on one side or the other is the only relief and even still the area is still stinging.

Tears keep forming but I haven't cried yet.  It's close though.  I have a super high pain tolerance so ya' know it's bad when I can't deal.

I could take pain meds, I have several options here.  They all could cause constipation.  This is not something I'm willing to even contemplate right now.

I haven't left the house.  I'm no where near ready to leave the house.

My disordered eating is back with a vengeance.  Eating causes pooping, pooping causes intolerable pain, so I don't eat and sugars go wonky.  Then I grudgingly eat with huge resentment.  And circle that again and again.

Sleep is worse than ever.

I can't concentrate on a TV show.

Sitting is very unpleasant.  

I have another Doctors appointment this afternoon with the family Dr.  The one with the g.i. doctor the other day went well enough.  I meet with him again after he meets with the surgeon and an agreed upon plan is in place.  Booked for 4 weeks out.  I'm booked to meet the surgeon in three weeks to discuss next steps.  

Guess what....the g.i. doctor says I'm complex.  Hahaha.  

I'm feeling a bit like insanity might be setting in just a little bit here.

On the mundane side, we had an h-vac person come to do a quote to install a/c in our bedroom. He quoted two units, 5900 and 6500.  Eric just went to Home Depot and bought a similar unit for $1000 and will install it himself.  That's quite the upcharge! How do people afford install services?

Funny thing, guy doing the quote was very young.  He hadn't come up against hot water radiators before.  Haha.  He advised we do everything possible to keep them.  Uh, ya, we know.  

Oscar's new metal fenders arrived today from Amazon.  We won't see Eric again until they're installed.  

Lili worked from here today so she could help me with my email problem.  We haven't made any progress this week.  I'm definitely ready to just let our domain emails go.  Too much hassle.  Right now we're stuck because I can't remember a password that was set up in 2002. Lili is attempting a recovery, so that we can migrate to the new server, blah,blah,blah.  

Eric went to Victoria yesterday for his next mole biopsy.  It was a bleeder.  We were up in the wee hours doing a clean bandage change.  Five weeks for the result.  Then recovery time before he can move onto the next one.  I can see the Doctor made a much bigger cut so hopefully the margins are clean.

We were watching a medical show with cancer talk in it and it was alarming how much jargon we understand now.

It's Friday and we have no weekend plans.  So weird.

Finally some zzzz's.

 I slept.  Ahhh.  So much better.  It feels a bit like my brain has calmed down. 

I woke at 12:30 and made it to the toilet.  Massive achievement here.  I went downstairs to brag about it to Eric and Jia.  Plus get a popsicle ;) Earned it, being a big girl and getting to the potty on time.  

Recovery is hard.  

It's nice out and I desperately want to take the pups for a walk.  I'm no where near getting far from home. Ya'll know I have no patience.  

I have some paperwork problems and a computer issue to deal with today. This afternoon I have a phone appointment with the new g.i. Doctor. At least I'm not bored, just a bit frustrated.

Not sleeping.

 

Rough road here too. 

Fecal incontinence is no joke.

My butt still has freezing.  So no pain yet.  

It is extremely daunting to imagine life in diapers full time for months.  Camping, cruising, shopping, Jeeping, hiking.  Aahhhh.

And let's all collectively pray that it is indeed only months and not forever.

I have reacted badly to the drugs from yesterday.  Lili said it was like my adhd went wild.  Haha.  Except with poor balance and horrible memory loss.  They told me to expect to feel drunk for a couple days.  Nope, just off balance and forgetful.

I'm not intending to take any pain meds, I'd rather have the pain.

To be clear, I haven't been diagnosed with adhd.  I will admit that in reading about the kids it's pretty clear that both Eric and I have a LOT of markers.  I see it as a super power though.  Haha.

So, of course, while I'm working on very little sleep a whole lot of phone calls, emails, texts,  paperwork, computer and printer issues popped up today.  It's been a stupid busy morning.  I got some finished.  Some not.  

I did get a call today from the adjudication person for the disability cpp.  She said they normally send a letter but she wanted to ask me how the hell I worked so long.  We had some good laughs together.  I told her I was a tough bitch.  Anyways....approved.  a bit more paperwork to muddle through.  I have to prove the kids are legally adopted.  Fei gets to make a claim on my disability too because she is back in school and living here.  Nice wee bonus for her.  The forms are being mailed so I get a few days off before figuring those out.

Retirement is sure busy.  Haha.

My Mommy keeps my toes on track by treating me to spa days with her and Poppy.  These were done in time for surgery.  Yes, they were noticed ;)

Orange for our Holland America cruise in a couple weeks.

Our ship was in the Victoria port when we were there on Friday.  The first port day of the year.  I didn't realize until later that it was 'our' next ship.  I was soooo looking forward to the hydro pool.  I might not be ready for water, I might be stuck with the rock beds.  Sigh.

Poppy is such a good girl.  She just sits calmly the whole time.

I got to spend the day with Christine for her 60th Birthday on Saturday.

We went to Superior Farms for the petting zoo.  We weren't allowed to pet the cows.  They lost their manners over winter and their horns are a concern.

So, sadly this little guy was the only critter that cared to be touched.

This guy spit at me and walked away quickly with side eye.

This is Annie, she is infertile.  We bonded with some chatter and eye contact.  I did get to hug her last year.

This is Bruce.  He is neutered. 

This is Dragonfly.  Her baby was the one we met last year and he was adopted out to Porters Farm.  He is very loved and has a friend coming from somewhere else so he won't be alone.

So sweet.

The petting zoo was a bust overall but we enjoyed just being together and visiting.  Then to Red's in Nanaimo for cheesecake.  Yum.  

I don't know how we got to be 60.  That's just crazy.  My mind is still a teenager.

When one can't sleep they shop.

I wanted red crocs to stay in Onyx for camping slip ons for the middle of the night.  Then I wondered if Temu had dragon shoes.  They do.  Thousands of them.  It was the beach towels all over again.  I had 15 pairs in the cart and finally whittled it down to these.  Can't wait for them to come.

I also booked camping for Mother's Day weekend.  Canada Day and Eric's Birthday.  With fingers crossed we won't have to cancel.  

Update on the barefoot shoes.  I LOVE THEM.  The ones I have are a bit loose around the ankles.  Now I want sandals too.  The shopping has begun.  I still don't know what makes them diabetic shoes but it really is fabulous to walk in them, even on pavement.

Eric went to town to get our personal taxes from the accountant.  He  brought them home for me to sign.  He took Jia with him to drop the signed papers back and they brought me home a ramen.  It had too much garlic for me so Eric scored a bowl of soup.

I'm a bit nervous to nap, I think I should attempt staying awake at this point so I might get some sleep tonight.  

Recovery sucks but is easier in many ways than the uncertainty of waiting and wondering.  

Survival

 

Just home from surgery.

Up at 3am, did a 2nd enena and surgical scrub shower.  Checked into Royal Jubilee at 6.  Went to sleep at 8.  Woke up at noon.  Home at 2:30.

Dr McPhearson told me just before I went to sleep that he was planning to cut, biopsy, close and cauterize the two open fistulas.  I am in support groups for anal cancer, chrones, short bowel syndrome, colectomies and fistulas.  Plus cecostomy for Luk.  I have never heard of a fistula being cut out and closed.  So that's wild.

He called Eric at 9:30 to say he excised the entire area.  Wow. Yikes.  Holly Cow.  He thought things looked good.  He's put in for urgent results and perhaps in a week.  Finally that I should expect total fecal incontinence for a couple months.  Sob.  

Right this second I am still very frozen and very swollen.  There isn't any pain yet.   Eric picked up meds and popsicles for me.

Time to nap.