Life keeps moving on

Yesterday I took a very big step (NOT literally, I only take little hops these days :).  My brother was here to help my mom with some stuff and I agreed to have him come visit for a few minutes.  It was ok.  I handled it much better than I thought I would and in 5 minutes no damage was done.  It wasn't really something I anticipated doing quite that way (I had wanted to do this away from home and when I was mobile but this was clearly the way it was supposed to be).

Today I went to see Dr. Mind for the first time in 3 weeks.  That's the longest I've gone without a counseling appointment in 12 years I'm pretty sure and certainly for 8.5 years with him.  It went well; I'm not at a place where I'm willing to get overly worked up about much so aside from taking that huge risk yesterday because all I can do right now is think about things and that isn't good at all.  Plus I'm doing petty well.  Oddly vicodin is a good mood stabilizer for me.  I have noticed that in the past and this time I was on a lot more of it so it really has kept me level, more level than I almost ever am.  I'm almost off it now so the fun should begin; this is my highest risk for mania time of year so we'll see.  I am praying that by staying inside all the time this year I'll avoid that because I couldn't handle it. 

My brother was back down and so I suggested to my mom that they bring supper to my house so they did and it went well enough.  He called me the nickname I never want to hear again but I can't bear to hurt him by telling him that so I guess I'm stuck with it.  What I know now is that I prayed a LOT about this.  I wanted to just let go and never felt right about it after the initial shock.  So I prayed and prayed and I truly feel this is what I am supposed to do.  So I'll be in his life.  If that means visiting jail I will do that.  If that means traveling across the country after he is out of jail/off probation then that's what I'll do.  His voice is the same.  He has still broken a large piece of my heart and nothing is going to change that but I already have one brother I haven't seen in 14 years and I grieve that loss.  I have a father I haven't seen in 16 years and I grieve that loss despite his absolute cruelty.  My little brother I had not say in what happened.  My father was the right thing to do for safety.  This is something that would leave me with huge regrets because it would be my choice and I'm not willing to make it.

Naturally I now desperately want to talk to Dr. Mind but I can't go back until Monday and even then is a little up in the air depending on how quickly I get the swelling under control. I can keep my foot elevated petty well in the car but sitting in the waiting room I can only prop it on a couch and in the interns' office where we are meeting for now (which is not half as nice as his upstairs office that I can't get to for a while) I can't prop it very far unless I bring my own pillows.   So it was not above my head for 75 minutes and it swelled up a great deal.  I really need the swelling to come down by Wednesday so that my new cast is tight enough.  This one has gotten loose and I accidentally moved my ankle and hurt it yesterday when I stretched after I yawned.  I haven't had much pain lately so I didn't like that.  I want a tight cast and not tight like it is right now from the swelling.  I predict a flat on my back day tomorrow.  That means lots of Bridezillas.  Yes, I have somehow gotten addicted to a ridiculous reality show.  I've never watched one before but I am still too sleepy to follow a series yet and it is hilarious to watch the over-dramatic women on that show. Last night I watched a full 30 seconds that all but 3 words were beeped out.  I didn't even know it was possible to string that many curse words together without practicing.  It meets my current needs.  Hopefully Netflix has many seasons; I haven't actually checked that.

Tonight I talked to my mom for a few minutes when she was tucking me in.  She told me something that my brother had admitted to her that I have needed to hear since April 4th.  It is what I needed to know before I could open my heart as well as my mind.  I mean, my heart has been open.  I have prayed for him so many times.  I ask about him nearly daily and truly have cared how he was doing.  But in terms of connection to him or willingness to forgive him I needed to hear these words.  And then I told my mom more and I think that I sent her home in tears which I feel bad about but I'm doing this my past is coming out of the closet to the extent that lets me have support.  This is a multi-lane highway and secrets nearly undoubtedly contibuted to this problem.  If my biggest secrets hadn't been kept as secret for so long it might have prevented this from ever happening.  'that was a function of time and place as well as my family but at some point it got twisted into this huge secret that just has caused everyone more pain.  I'm tired of that.  When I tell Dr. Mind that he is going to first fall out of his chair and then proceed to want me to bring my mom in to talk about it.  Not happening.  They can meet in the hand-off of the very wobbly on crutches me (I don't use them much so I'm not that great with them yet.  My walker is so much easier and I try to combine up times so that a bathroom trip also includes picking up a snack or water or a pillow from the couch or whatever and if I'm going to carry something I need the walker tray.

I am so tired.  I can't believe I'm still awake.  I usually sleep most of the day.  Nights are really hard because I don't like to sleep on my back, I tend to have more pain then, my knee gets stiff and sore from not moving on the pillows it's elevated on (I think that I am unconsciously afraid of moving), and I can't take meds to increase sleep b/c they'd decrease my balance.  Today I've been up since 10:45, had my big trip out into the world, had dinner with my brother (stressful), and went to bed thinking I'd fall asleep at 7.  And now it's 2 AM.  Which is fine, it will help me keep the leg way up high tomorrow.  I'm hoping to make it all night with 4 pillows and a couch cushion under it which has my knee and hip nearly fully extended but seems to be letting the swelling go down.  We'll see how that works.  For now I"m typing flat on my back with 2 of my best purchases (a "bedrest pillow" and a travel neck support) holding me up enough to see the screen.

I was trying to read until I fell asleep but this book, which I have read or listened to on CD, is annoying the crap out of me because Every!sentence!ends!with!an!exlamation!point!.  It is so overly cheery even when that isn't the intention.  And it's hard to hold a book in this position.

Oh, and I've lost 10 lbs (more or less, hard to get an accurate reading on the scale with one leg and the other in a big cast) since surgery.  Non-weight bearing is a lot of exercise and I've been tying to eat really healthy meals and my snacks are mostly fruit things, fiber/protein bars, and some junk with water.  My abs are getting tighter every day as well.  I'll have to do sit-ups when I can walk again to keep this up.  It's amazing how much I have to do with my abs and arms.  I can't tell you how hard my stairs into the house are.  It takes all my stength and I have stong arms. 

That's it from bedrest land.  Not bad for someone not doing anything.

Life: Round 41

I don't know the whole story and I'm not going to try to share it because leaving out parts can make it seem even worse than it is, but after months of not feeling good and test results that didn't make sense but ultimately were declared "nothing" my mom's good friend/unofficial member of our family had a scan today that detected results the prior scans didn't.  An appointment was made for him at one of the top specialists in oncology of the specific organ that is involved for Thursday.  She'll be taking him; at least she's getting good at finding the hospital.  But it looks to potentially be very serious and I am afraid. 

Laying around

Still here, still laying around.  I saw the dr. Wednesday and got the Bigfoot cast off and a more normal cast applied.  The effects of following the bedrest/elevation orders are immediately obvious as there is almost no swelling or bruising.  The incision is pretty big and I'll have quite a scar but who cares?  It beats being braced and certainly beats repeated injuy.  The dr. seemed pleased.  I liked him this time.  It appears he likes to do surgery.  He doesn't like to talk about a theoretical surgery but he'll happily discuss once he got to cut.  They did a lot of clean-up in there, tightened ligaments and tendons and sewed it all back up.  He said 8 weeks until I can start putting weight down.  That's better than 12 which is what he told my mom Friday.  I'm in my first cast now and that comes off in 2 weeks for stitches to come out and then I get another one. 

I can see now why he does things differently.  Usually the bigfoot dressing is on 2-2.5 weeks and then is removed, stitches are removed and the cast is put on for the rest of the time.  My doctor is more tightly controlling how much movement I get by never letting a cast get looser from decreased swelling.  The cast is even done differently than a usual ankle cast.  It goes completely over my toes, which has made doing stairs really hard and scary (I call it my flipper) and it is contoured so that there is an arch to my foot and around the foot it is form-fitting.  It is much bigger in the ankle where I have a lot more padding over the incisions (2 on top of my foot and the big one on the outside of my ankle) and then I have additional padding on my heel because I have 2 stage I pressure sores there.  I apparently was propping my heel on things and didn't know it because you can't feel it through the Bigfoot thing (or the flipper either) and so I have to be careful about that now too. 

Anne came over to visit and watch a movie today.  She was really sweet and really careful with me.  Such a sweetie.  Her sister was here too and gave her very first hug ever to her big sister who was thrilled.  The baby is a little beyond my abilities right now but I did get to hold her for a minute.  She crawls at the speed of light and pulls up on everything so she requires someone who can move quickly all the time.  Anne asked me questions about my brother today, which is expected.  When I admitted I couldn't explain it partly because I don't understand she told me that she thought grown-ups understood everything.  No, 'fraid not sweet one....and especially not this.

Anyway, just wanted to say I am still here, still in bed.  Tomorrow I'm going to try showering I think.  I can't wait for that.  Mostly I just lay in bed and try to make sue I'm low enough in bed that my foot is way up.   That's much easier with the cast as is nearly anything.  There's not a lot to share as not much is going on in my life right now.  I sleep a lot.  Today I've been quite itchy from the pain meds.  My cat is snoring loudly; that's tonight's biggest news as I don't know how to stop him without jabbing him with my cast which seems mean. 

2 more weeks and then I'll find out if I can be up a little more.  I think they're going to want me to stay down as much as possible for the entire time I'm nonweightbearing from the way it was said yesterday.  I'll take that 2 weeks at a time though. 

More soon,

Just Me Jen

That will do it

Today I had a really upset stomach and lots of bathroom trips.  I didn't eat much and just felt lousy.  I also was wide awake since 7:30 AM.  Part of this was because my nerve block shifted and started working far too well so that my entire foot went numb until I called the pain center and turned it off.  They said I could put it on again if I needed to but I have been ok and it was coming out tomorrow anyway if all went well.  So I guess that is one thing taken care of.  But if just was a rough day  and I thought it was the pain medicine.  Until I got my pill box and discovered I didn't take my meds last night.  So I was in benzo withdrawl and probably fine otherwise.  (I just feel gross because I haven't been able to shower since Thursday and sponge baths are only so good, but it adds to feeling sick I think.  Plus I'm hot then cold then hot again despite having the air conditioning at freezer temperatures.  I'm assuming this is from anesthesia but it's annoying.

Anyway, lessons learned: nerve block wasn't doing as much as I thought although it was amazing the first day and a half; I hate having a numb foot; sometimes my ankle wants to be elevated much farther over my head than is required and that is to be obeyed at all times; take your sedatives and addictive meds daily. 

You'd think at least one of those would be something I knew............(To be fair I've had a lot of things in my body and forgetting a dose of routine meds isn't surprising since I also forget seemingly everything else.  I'm making my poor squeamish mother go into the doctor with me Wednesday so that she can remember things.  I just promised she doesn't have to look at the incision or anything else.)

Hopefully tomorrow will be better.  Actually it will be because we are washing my hair and that is a BIG DEAL since it hasn't been washed since Thursday and it is gross and long and sweaty and in a bun on top of my head to keep it out of my face.  I usually shower and wash my hair before bed and that's a big part of my routine so between that and hating to sleep on my back falling asleep at night has been tricky.  I miss the hospital bed where I could achieve real comfort for sleeping.  Don't miss the rest of the hospital but that part I do miss.  I can sit on my couch but not really easily so we've decided to make that an experience for after my real cast goes on Wednesday.

Yawning, maybe going to sleep.....

Bedrest

I have nothing really to say.  I slept through a pain med time last night and so spent part of the day catching up on the pain.  Thank God for the nerve block pump, even if it is annoying to be attached to something all the time.  (There is a catheter similar to an IV in the back of my knee with all kinds of stuff covering it.  There is a tube that goes from the port on the catheter to a bag the size of a small purse that holds a bag that started with a liter of anesthetic.  This automatically gives me a dose every minute or two and has a button I can press to get an extra, bigger dose.  10 minutes after the extra doses is when I feel best but I can only do one every 70 minutes and it looks like I can't do it every 70 minutes without running out of solution before the pump comes out on Wednesday.  It's annoying because I easily forget that I have a long line coming out of my leg but it helps a lot.  I'll miss it when it is gone.  Which I'm sure my doctor will be very happy about since he won the argument about having this at all.  I wish I could keep it another week or so.).

Here is a picture of my current dressing/cast (really casts; there are plaster casts and fiberglass (normal) casts both under there.  At the widest it is about 10 inches across.  I've been good enough at keeping it up that my toes are now way down far below that cotton at the top because gravity has my heel further down in the cast. 

Otherwise I spent the entire day sleeping and so have very little to report.  I did a sponge bath and had to have my mom help me put underwear on.  Nothing fun about that.......

Survived

I am home from surgery.  I'll tell more later because I'm getting sleepy and it's time for meds but it went really well.  The things that were damaged were fixed and the ortho told my mom that I will have a great prognosis as long as I am good with following the instructions.  So 2 days of laying in bed are done, 3.5 more to go and then I'll only be in bed 23 hours per day or something like that.  I did wind up with the nerve blocks (3 in total; 2 for surgery and one of those was supposed to be left in for 5 days but it quit working this morning so that my pain went from 4 to 8-9 in about 5 minutes (the first number was from before I tried to move) so I got another one today that has me totally numb.  I know there is space in my cast to move a little but I can't wiggle my toes yet, much less move my foot or ankle.  This seems to be starting to wear off a bit but I don't know how strong the block will remain until it comes out Wednesday (or sooner if i choose).  I have made it to the bathroom alone once which was great (it takes some extra effort because not only am I non-weightbearing but I have this bag a bit larger than a clutch purse that contains my nerve block pump and it goes where I go.

So now begins 12 weeks of non-weightbearing and then I will start therapy and learn to walk without external support again.

It was a very positive experience with nurses who were great advocates for pain management and I am so glad it is over.  (OK, so the first part is over.)  And now I am sleepy so I'll take my pain pill and see what I can do.)

Too close

I am now so nervous that all I've eaten today was a granola bar at 7 AM.  I have to find something to eat and nothing sounds good at all.  Tomorrow night I'll be starving about 12:15 AM so I need to eat now and try to remind myself then that I ate plenty today, but I just can't figure out what I want.  Oddly I really don't feel anxious beyond what I've been feeling but I think the stress of my cat's illness combined with this has left me not hungry at all. 

I did have some success with the cat.  She is very happy to have a litter pan upstairs.  I'm not, but hopefully it is temporary.  She is still vomiting and yesterday the vet said the med for that had to be given orally or in a shot.  I suddenly remembered today being told that it could be given transdermally (the med goes on the skin inside her ear) and called them after I found a place that sells it that way.  Sure enough they can get it and so next week she'll have something to help when she feels sick.  This is certain to ensure that she doesn't vomit again for a year, but I really want her to have a good break from feeling sick.  She has been a little less lethargic today and has wanted cuddled a bit which is good.  I'm coming to terms that I have to accept that she won't be here forever.  Which is just hard to consider given that she made it 19 years so far.  After she got that old I somehow stopped thinking she'd ever be gone.  In contrast I got my other cat and another that died when she was 7 because I knew cats don't live THAT long very often and I wanted to have established pets if she did die.  Now she's almost outlived that age by twice the factor so that joke is on me.  But I know that first we have to stop the vomiting so she stops losing weight.  Time to break out baby food and possibly my own homemade kitty tempting but disgusting chicken livers and gravy puree that they love but is oh so very gross to make and smell.

I feel like something profound belongs here but I'm out of profound.  I'm just working my way down a checklist I made and I actually abandoned making a soup to write this and try to figure out a supper.  I think it will be a frozen dinner.  Easy, filling, different and I can replace it when I need to.  My mom keeps telling me to not worry so much about having food stockpiled but I don't want her to have to constantly need to take care of me and to have to work around my dietary restrictions which really change her own diet.  Waffles.  That is what I need. Waffles and milk.  I think I even have some safe sausage.  (It doesn't taste very good but it is safe).

Time to eat.  Must eat.  Much to do yet tonight.

So tired

I have been doing so much trying to be ready for surgery.  I know that if things are out of place it will irritate me endlessly so I'm trying to finish.  Today we loaded all the moving boxes up and took them to recycling and finished unpacking the garage things (the last boxes).  I still need some shelving units though but I should be able to park in my garage now. 

However I am tired and keep getting migraines because I had to stop the magnesium that I take for prevention.  To top it off my old cat (age 19) has suddenly been peeing outside the litter box.  I took her in for what I thought was a UTI today and while it is a UTI it is mostly kidney failure.  That diagnosis has come and gone repeatedly but this time it will stay.  It's not that advanced but is enough that it isn't just a transient dehydration.  So we had labs done and prayed her was a treatable thyroid problem but it wasn't.  I can't afford kidney food for her and don't really want to take away the food she loves anyway.  I set up a litter box in my bedroom with that litter that swears that it clumps into a completely non-smelly ball for 7 days.  Either I haven't found pee that was already on the floor, the new stuff smells like pee or it doesn't cover any odor because my bedroom (where the littler is) smells like pee.  I think I probably just haven't found some pee yet but I also don't like the smell of the litter.  I want the pan there because it is where she mostly pees but not if it is going to smell.  I have no idea where else it can go though.  That's the problem with a tiny apartment.  Anyway, I cried at the vet's and for quite a while afterward.  When the cat is 19 you know you don't have forever with her.  And in fact the average cat with her level of kidney failure lives about 2 years.  If she lives 2 years she'll be extremely old.  So it's not like this really changes anything, I just hate that she doesn't feel good.  When the antibiotics kick in she will feel better again.  I hope. Usually she only has about 10 really active moments per day so this is hard to see but she is lethargic and that's sad.

I feel like there is so much to do and so little time left to do it.  The girls will be here Thursday so tomorrow is when most things must be done.  Mostly it is small stuff but it still takes time.

Big news on the niece front.  Geraldine is starting to say "Get ____".  The other night she said "Get (name she uses for Anne)." when she woke up and wanted to play (she's been sick and fell asleep early and then woke up very early.)  She said Aunt Jen again when I saw her the other day, as well as Jen, Jen, Jen.

I promised myself that I wouldn't do anything tonight but rest.  I'm having a really hard time sticking to that.  I probably should just take some valium and go to sleep.  It would be easier if it were less scented in here.  Oh well, the hope is that when she feels better she'll not need the extra litter pan anymore and if she does I'll just have to find a litter that works for both of us.  This sounds good but may be a little too scented.  I didn't realize it was scented when I bought it. 

I should take a shower, I'd probably relax but I'm too tired to want to stand up.  Lazy, yes, but true.  I'll do that tomorrow. 

That's it from here.  Finding it so weird that I have 2.5 days of walking left and then I won't for months.  I'll miss taking the puppy to the dog park.  We've been going nearly every night and he has so much fun.  I don't think the lake and my cast will be friends though.

Anyway, more tomorrow I'm sure.

Anderson Cooper tries hearing voices

This video is really neat because of the level of dysfunction he shows when it is clearly not his baseline.

http://www.cnn.com/video/data/2.0/video/us/2014/06/09/ac-dnt-schizophrenia-simulator.cnn.html

Oddly it also made me realize how much more I used to hear voices than I knew.  I still do sometimes and I have to be careful not to talk back to them in public but watching him I kept thinking "but the worst part is that you get USED to it".  Which is horrible to think about because he struggles so much with simple tasks.

I'm glad they did this.  It wasn't really a schizophrenia simulation as they stated as it only really dealt with one symptom but it was still interesting.

Decision

I have decided that I will talk to the anesthesiologist about the anesthesia-only nerve block but I do not intend to get one.  If he (I hope it is he as I want a specific doctor) is completely convincing then I'll reconsider but the reality is that I know my body better than they do and I know that if I would do this and become agitated I would not forgive myself for the absolute misery I would endure.  I feel much more at peace with the idea of dealing with more pain.  And really that pain will only be worse for a few days.  The nerve block was only for 3-5 days at best.  I keep thinking that I often get agitated when I have dental work done and I'm fairly sure that it is a great deal less medication to numb part of your mouth than it is to numb your entire leg from the knee down.  My preference is to repeat what was done with my hysterectomy and to have a morphine pump and wean off that over a couple days.  I don't know if my preference will matter there, but that worked extremely well for me and it's always good to go with what we know is good.  I also question what benefit numbing my leg has when the purpose of the traditional nerve block is to decrease swelling and bleeding, which won't be affected by this other thing.

I see all these ways doctors may be unhappy.  They are going to feel like I did my own "google education".  This isn't true, they told me the name of the drug and I looked it up.  Based on what the profile says I'm not comfortable.  And while my reasons probably will sound extreme to them they've probably not recovered surgery much more minor than this while not sleeping, not eating and not being able to sit still, at all, ever, no matter how much medication is given.

I am used to being pushy about my interactions or allergies.  I'm not used to being pushy about something I don't know a ton about. But I feel peaceful about this and I didn't until I decided.  As I said I may change my mind completely.  I'm not sure what the anesthesiologist would have to say to get me to change my mind but I'm not going in with a closed mind, just the opinion that I will change my mind only if I feel that is the correct decision when laid against all the reasons I'm opposed.  I won't have those with me which is too bad (I'll be far enough back to surgery that I won't be allowed to have anything including my glasses), but I think I can remember the main arguments.

Chances are good they'll believe me.  We go to great lengths to establish that I'm a psych patient without stability and that I can easily be thrown off course by seemingly harmless meds and that it is best to stick to what is known.  A psych consult has already been recommended so that nobody messes with my meds.  Psych has been in touch with Dr. No Bedside Manner several times and I let them know about the nerve block dilemma and they declined to weigh in.  (I believe their point was supposed to be that it was anesthesia's call period, not mine at all, but that's just not true.  My body, my decision.  And I think that at least the anesthesiologist that I want would back that decision.)

Now I just have to survive this week.  I have a cat with a probably UTI so I need to figure out how to get her to the vet as well as seeing Dr. Mind and doing a bunch of errands tomorrow (probably this is called seeing the vet Tuesday which is too bad since the cat is not making it to the litter box and I don't think she feels great although she's not in acute distress) and I have all these things to do and yet I am wanting to sleep many hours per day.  That's so rare that it is hard to not indulge it completely.

Oh well.  At least I feel right about one thing.