Pretty pretty zombie

Yesterday's post was a bit premature as it ended up being my worst day thus far.  Let me re-phrase that - I felt unwell.  Really un-well. The numbness and mobility have improved quite a bit - if this is my new normal I'll take it/I can do this but the off-balance tight rope act yesterday was a doozie.  Dizzy.  The nausea that accompanies dizziness.  One hour into work I realized I wasn't going to be able to pull it off, told the charge nurse and pushed thru until the next crew came in four hours later.  It was 'sit down or fall down'. Epic Fail.  Arms thrown out for balance. It took a second everytime I moved my head to register whether I was going down or not.  Sadly and disappointedly I have to go in to talk to my boss today.  It's not like I have experience in this realm - not with the side effects I could have expected or the direction this disease was going to take me but it seems I have to give work more notice when I'm having a bad day.  I'm disappointed and surprised at the lack of compassion from some people in charge.  I guess the obvious is not so obvious - if I had thought I needed to call in sick I would have.  I thought I was having a better day.  It was not a better day.  And having to go 'in' to talk to them today?  Seriously???  One more piece of bullshit that I am not happy about.  How about that stress reduction program I thought we were all on board?
I was told to expect putting on about 8 lbs this first week because of the steroids.  I have lost 8.[edit - I've lost 4.  I forgot I gained 4 at first]  Terry tried to bribe me with steak last night - god bless him.  Just too pukey to eat it and I was too tired to chew.  Weird, huh.  He saved it for me for lunch today and I'll make myself eat it because I saw how worried he was when I didn't last night. 
I slept 12 hours night before last, took a 3 hour nap when I got home, slept another 12 last night and am ready for a nap right now. Unbelievable.  So tired.  I'm tempted to go into work unshowered and un-napped.  I'm tempted to put on one of my dirty shirts as well.  Puffy eyes with circles.  One of my co-workers said I look a little spacey - that my eyes are a little wider than usual, that my movements are stiff and calculated and that I tend to focus my eyes ahead.  Kind of like a zombie.  I feel so pretty.  Dawn of the Dead meets MS.
On the other hand, it's Halloween.  Which means tomorrow is not.  Which means maybe there is hope that tomorrow will be less scarey.

"A scholar of philosophy said that the final creature to fly out of Pandora's box, Hope, is not the cheery little fairy everyone likes to think that it is. He said, it's the worst of the demons. The demon that lets you pretend that a magical fix will happen and Everything Will Be Better and you don't have to do anything to make that happen. "

I copied this from a blog because it hit so true for me.  It IS a demon.  [I apologize to the author that I could not re-find the blog this morning to credit them and tell them how much I appreciated the post]

So my hope for the day is not a magical fix.  Something more simple - to not get fired, to walk across the room and not fall.  To finish that steak

better

Ooooh but yesterday was rough.  Better today.
I supposed 12 hours of sleep might have something to do with that.

 Truly miserable yesterday.  Unbelievably thirsty but too nauseous to drink anything.  Everything smelled like fingernail polish. Hot hot hot and red as a beet.  Too dizzy to function and when I pushed thru to go get a pedicure, just to get out of the house,  I just wanted her to be done so I could lay down again.

It occured to me this morning that maybe I should check my blood sugar.  Steroids tend to make blood sugar rise and, now that my brain is slightly clearer I thought it might explain a thing or 2.  Like the fingernail polish.  Of course that my brain was foggy should have been the first clue.

All I get is 'high'.
Pretty smart for a chick with holes in her brain.

Rage against the machine

One of my favorite docs loves this band, listens to them on Pandora in the morning at work and when someone asks who is playing I like to quip 'Isn't it that band with de la Rocha?' making me look all smart to them and smart-ass to the doc.  I have no idea who is playing, we all know I'm more of a John Denver sort of gal but I do like catching the doc smile when luck has it that it IS de la Rocha.  My other quip is 'Isn't that Eddie Vedder?'  all serious-like.  Again, no idea but that brings on 'You think everyone is Eddie Vedder' from the doc and I'm the one smiling this time.  Once again, Sharron is your go-to gal for everything musical.  I'm just your smart-ass.

For some reason the phrase Rage Against the Machine always seems to pop into my head when I'm trying to describe a symptom that is indescribable [though I picked up the phrase 'wonky' from one of your blogs and it works quite nicely in lieu of long wordy descriptions - I don't know what 'wonky' means actually but since no one else does either they lose that knitted eyebrow 'what the heck does she mean' look and I can move forward]  One word, wonky, and all this pressure for more information evaporates.  Love it.

I want to be gracious and wise with this new diagnosis.  I want to set example.  I don't mean to imply that I'm the only one who's ever had a curve ball thrown at them. Lord no. Not ever. I've had my own series of curve balls and did a whole lot better than I'm dealing with this one. Maybe it's because most of the people I work with are 1/2 my age but there's is this core to me where I feel really responsible for leading by example as I navigate this murky water.  Maybe it's difficult because, on the inside, I AM raging against the machine.

I try to start my day out on a positive note  I try to put all the positive stuff out there - the numbness is so much better, I'm so lucky I don't have the pain that so many people have, I can move my toes so much better today, the headache is almost gone, how grateful I am to ::whoever I'm talking to ::: for their support.  You know - the good stuff.  The truth.  And then BLAM!  I'm the tightrope walker with my hands out for balance.  Out of no where. Just for a second but it's a long enough second for someone to have caught it.  Now the day is filled with questioning concern - 'You ok?  Let me take this next one.'  And I feel like a fraud.  And, bless them, unintentionally they pass on their concern to someone else.  Genuine concern. And I AM ok.  Just not the same ok I was 2 hours ago.  And inside the Rage begins.

Sometimes the Rage is rising and someone gets that look of pity that I have already come to despise.  Ohhhh I'm going to have a tough one with that, that pity.  It's still a bit of a shocker to see pity and probably above all things that look will dissolve me to tears the quickest.  Not liking that look on someone else's face.  No warning.  The tears just spring up.  I'm not a pretty crier and that is probably my luckiest stroke so far.  Knowing the puffy eyes, the blotchy chest and face, the lovely nasal tone my voice will take is my biggest shield to the pity.  I don't want to be 'the gal who always cries'

And now for the whole point to this post.  And I swear to Sweet Baby Jesus if I see pity I'm going to come thru your screen and throttle you all until YOU are a little wonky . . . Mainly I'm kidding but don't risk it.
I'm going to have to use a cane for a little bit.  My balance is just too off right now and I'm going to get hurt if I fall.  And I'm Raging Against The Machine inside.  It's probably just the medicine.  Probably not the MS.  Could be something entirely different like an inner ear virus.  But a cane . . . . Who would have thought.......

A couple of my co-workers want to Bedazzle one [you know, with rhinestones and gems]  I'm touched by their acceptance and mortified at the same time.  I was really thinking more of a 'Harry Potter's Cloak of Invisibility'.  Someone else suggested blinging it out Chicago-style.  I told them I thought the dangling pizza boxes might get in the way.  Trying to be funny.  They laughed. Why does this seem like such a monumental decision? 

I'm just going to head over to Good Will and pick up a cheapy.  No sense spending money on something I'm not going to use for long.  Right?
RIGHT????

Random thoughts

Infusion #3 is over.  It's been an odd place - being the nurse in the patient's chair.  The feeling was exagerated today as I was still in uniform, sitting there as 1000mg [that's 3 zeros John, if you are reading this] of Solumedrol coursed my veins. 1000mg x 3.  As the nurse I didn't realize how quickly and how crappy it makes a patient feel.  I am humbled and a bit ashamed at my past insensitivities.  An odd place to be when the nurse casually went to retrieve a smaller IV catheter as she could not find a vein.  Using the same lines that I use when I am skeptical that I will get the IV first stick - I didn't realize how flat those comments/jokes fell.

This song was on my IPod today

Don't take this wrong.  I'm not saying I wish this was cancer or that I am diminishing a cancer patient's journey.  It just occured to me today as I sat there in my nurse's uniform that a cancer patient has hope for a cure.  There is no such hope for me.  No cure. I think I finally 'got it' today. No pretending  Lots of uncertainty - not if this will get worse but when. Not knowing when or what or how.  I was the youngest patient in the Infusion Center.  The nurse/patient surrounded by other patients calmly accepting their treatments while inside I screamed.  An odd place for a nurse to be.

Is this blog like watching a train wreck?  One of those accidents that a person feels terrible about and doesn't want to be near but they can''t help but watch?  I guess I really don't mind if someone reads my ramblings and feels a sense of gratefulness that their own life hasn't turned to shit.  I just never thought I would be that train wreck. I feel a little ashamed.  A little embarrassed.  And a whole lot nauseated.

I remembered reading a story about a Native American woman who left her tribe to live her final days in the mountains because she didn't want to burden her tribe. I thought about her selflessness and resourcefulness in living on her own.  I also remember she lived many many moons by herself, alone in the mountain.  Why did I remember that story today?

Today is my grandson's 4th birthday.  My son's youngest son.  Phone calls and texts have gone unanswered.  It is 9:30 there now and it's obvious that I am not going to  be allowed to speak with him.  Today and who knows when again.  I'm sad and I don't understand.  Texts about me being the the hospital went unanswered this past week too but I guess I thought he'd let me wish Miles happy birthday.  I miss Seth.  Such sweet boys   Maybe some day. . .

On a positive note my toes are nearly back to normal. The numbness is still there to some degree and now the left leg feels a little wonky too. There's more tingling and achiness and that's fine.  I'd rather feel something, anything, than have the numbness.   The headache, the dizziness, nausea, heartburn and fatigue will improve with time as will the shakiness and inability to sleep.  It's do-able.  These steroids at this volume make PMS seem like a walk in the park.  I'm going to encourage Terry to golf all weekend :-)  I don't know why I thought I would be exempt from the 'ickiness' when I was willing to accept the good this would bring.

I have rented out my apartment in Illinois to a nice couple with a 4 yr old son and 7 month old daughter. I was so relieved to have found someone to rent it and someone who seemed to appreciate the apartment that I loved.  They moved in yesterday.  They moved out of Chicago to better their lives and have been living in a motel for 4 months.  She called today to ask if she could be late with part of the Nov rent.  It seems that they slept on the floor last night as they have no furniture and she wanted to use part of the rent money to get an air mattress.  No furniture.  None.  No dishes or cookware.  I made a few phone calls to friends back home and they will have living room chairs and a dining room table and chairs tomorrow.  They will also be hooked up with the Salvation Army's food bank and will receive vouchers for the Thrift Store for dishes and cookware.  Small appliances .  Hopefully assistance with utilites and a gas card or 2 until they get on their feet. Toys for the kids.  This young family will be one of the families for 'adoption' for Christmas wishes and hopefully receipients of a nice Thanksgiving dinner.  All because of a few phone calls.  The goodness of people never ceases to amaze me.

I'm ok.  Just sad and feeling crappy.  Never a good combination for me. The steroid puffiness is not a good look for me.  I hate that I am vain about it.  One more day of work and I'll be able to have a day off.  I'm ready for that.

A man of few words

Have you ever heard of a family getting a new pet and finding in a short time that they had bitten off more than they could chew?  You know,  the dog that cries at night. Or the bird That won't shut up. Or the rabbit that is proving to require more care than you signed up for. Although you love them, it's Just more than you want to take on And you wish you could roll back time and make a different decision.
I had that conversation this morning with Terry.  Were there any regrets? I said all of the above. We've only been married 2 years. Neither one of us saw this coming. I just needed to hear there were no regrets.
" nope"
I knew there was a reason I married that man

Round 2

Zofran - check
IPod charged - check
cell pone charged - check
ibuprofen - check
mints - check
ginger ale - check
book - check
note pad and pen - check
kleenex - nope.  I'm done with this crying crap
big girl panties on - check
sweater - check

On a very positive note, the steroid puffiness is making my eye crinkles and laugh lines softer.  I look 5 years younger  :-)
By the end of tomorrow I should look positively pre-natal. 
Here's hoping I don't look like a wrinkled newborn on the flipside :-)

And she's off . . . .

Answers and . . waking up

So.
The news from the neurologist was the obvious - my first 'official' MS exacerbation.  The dreaded news was actually a bit of a relief.  First and foremost - I'm not losing my mind.  I joke about it but that IS my biggest concern.  This stuff just does not make sense.  With MS it's not supposed to.  [I may need reminding of that from time to time.]  My description of the sensations was 'right on' - a 'short in the cord' so to speak.  The information from my leg/foot is accurate, the message from my brain is not.  Stupid brain  :-/
I'm back home with my first treatment already completed.  I'll be going back tomorrow and Thurs  for treatments 2 and 3.  Treatment is just an IV infusion of steroids.  Pretty simple.  The worst part is the IV [imagine that, a nurse who is afraid of needles] and the taste in my mouth [a nasty salty, bitter metal-y taste] that is leaving me a little bit pukey.  I have a headache [stress perhaps?  you think???], I'm tired and my eyes are already freakishly swollen.  Small price to pay for that fact that the numbness is already better and [wait . .  .wait .  . .wait for it . . . . . ] I can move my toes better already  :-) 
You know what it feels like after you've been to the dentist and your face is waking up?  That numb, tingly, achey, hot/cold WONDERFULNESS????  Yeah  :-)  That's it.
And I'm going to try hard to never take that feeling for granted ever again

Off and running

Not so much.
But I am grateful for the neurologist working me in today.  A taddy bit anxious as well. 
The right leg is still oddly numb [still that whole 'feels like it's numb but I can feel touch' thing]  Starts on the outside of my right thigh, wraps around my knee and then jumps to my foot.The foot is not so much numb as that feeling you get when your foot has been asleep and is walking up.  Remember that feeling of relief you have when it finally 'wakes up'?  Yeah well I'm going to REALLY be relieved and grateful and try super hard to never take that 'normal' feeling ever again.  Seriously.  Color me grateful. WHEN it happens.
The toes are another matter - I can't get them to consistently move. Two days now. I feel a little bit like Luke Skywalker.  Remember that scene in Star Wars where he is trying to levitate something.  Well Terry has been my Yoda   'Don't try...DO'.  Ok Mr Jedi Master, I'll get right on that.  I might as well laugh.  Giving that a try today as fear and anger didn't improve anything yesterday [not anger with Mr Jedi Master - just the frustration of being out of control]  If I am wearing a sock and if I am looking at them I can move them a little - slowly and the timing disproportionate to the effort, they move a little.  If I'm not looking at them?  Not so much.  I'm not quite sure when I rise to a stand if my leg is going to give out.  It never has but it has that weird sensation like it might.  So there's a pause when I stand, a little hesitant step.  And a quick look around to see if I got away with it without anyone noticing.  Sigh.
I'm strangely optomistic today.  That or maybe I'm just ready for a logical explaination.  Definitely looking forward to some criteria as to when I should be concerned and what is expected.  Something.  Anything.
So I'm off.  With high hopes and a grateful heart.  Grateful that I have lived almost 56 years without having  to deal with this before.  Grateful that it is only one leg.  Grateful that I have Mr Jedi Master.
Grateful for views like this one this morning. . .

I must be off

... on a walk with Terry.  It's a beautiful Arizona October day.  8am and 68 degrees - it's warm enough for shorts and a football jersey [too bad my Bears don't look that great this year]

No real plans for the day and I'm going to leave it that way.  Annie is in the window enjoying the sun - I'm taking my lead from her.
Hope you guys have a good day too

Nurse brain and 4am

It's 4am and I'm up.  I don't have to be at work until 7am and usually get up at 5:15 so why would I get up now?  To see if my right leg works.
Sigh.
So much for not taking inventory.
My right knee has felt as if I've been given a lidocaine shot for about a week now.  Yesterday and today my toes are really numb.  Some of them more than others.  At first I thought it was from sitting on the plane when I went back to Illinois.  And then worse from flying back here.  You know how your bum gets numb when you sit too long?  I thought it was kind of like that.  Only just my knee at first but now it's more like the knee down.  It's weird.  It's not numb to touch it but if feels like it would be.  The closet thing to explaining it is this - if I get poked with a needle I feel it - it's like there is a message from my leg to my brain and it is received correctly. The sensation driving me batty is  a message to my leg from my brain telling me the leg is numb.  Only it's not.  So when I'm walking I can't tell if my leg is working or not unless I get a message from my leg telling me it's true.  So is the knee stiff or can I just not tell if it is?  Confusing isn't it.  Thus being awake at 4am.

My nurse brain wants to make sense of it all.  'If your leg is numb then it might be weak.  If your leg is weak you are going to need more time to get ready for work.  Can you work? Can you walk?  Will they let you use a cane at work?  Maybe a cane is a good idea  ::insert voice in head screaming 'noooooooooooooooo!':::'  At 4am.  And wondering at 4am, in that half awake/half asleep state if Terry can hear my brain screaming.  So I just got out of bed.

Nurse Brain figured out at 3:50 that if I have a sock on I can feel my toes wiggle against the sock [as opposed to not knowing if they are moving without the sock].  So I'm wondering if I put an ace wrap on my leg if that will also send a message to my f'ing brain and set it straight.  Insert anger.  Insert fear.  Insert deep breath.  Insert frustration that if my leg doesn't work at some time that I have pissed my life away and missed so many opportunities to do things that are going to require 2 working legs.

So what lesson is this challenge trying to teach me?  That I am resourceful and can work thru the problems?  That I need to get better at asking for help?  That I need to quit sweatin the small stuff?  That I need to seize the day?  All of the above?

The neurologist said to call if I have a new symptom that lasts for a week so I called yesterday.  He is working me in on Tues.  I guess that's good news on 2 fronts - good that I have a neurologist who will work me in and good that on Tues I will have more information.

No tears this time.  Crying a river isn't going to solve anything.  It's a strange sensation have a foot feel numb but also feel the sock but the sock is providing some much needed reassurance so it stays.  I almost feel like I could go back to sleep.  Except my alarm just went off   LOL

Uncharted Books

A friend of mine is starting a used bookstore in Chicago.  It is the kind of bookstore you have always wanted to make your own - great books, plenty of chairs from which to browse, tables [if you are a writer] with wi-fi and plenty of outlets for your laptop.  A place where you are greeted by name.  It doesn't hurt that it is located across the street from a Blue Line stop where  you can come in from the cold until the next train comes in.
http://www.kickstarter.com/projects/1945935286/uncharted-books/backers

Consider a donation.  Consider it an investment in something truly good in a world where things are not always so.  Consider it buying a book but leaving the book for the next person to read.  Consider yourself part of creating a place where the next generation can see what a real bookstore is.

Tanner is a good man with a heart of gold. [You can read about him at the link]  I wish him well with this endeavor and can't wait to get back to Chicago to browse the bookshelves myself

lessons from kindergarten

Just back from Illinois last night.  Terry took me to dinner and I promptly fell asleep in front of the TV when we got home only to go to bed after a couple of his attempts to wake me up.  He's a good guy :-)

I could write a lengthy post about this past week in Illinois but I don't think that kind of rehashing is healthy for me.  Right now that is what I am focusing on.  I need to focus on being healthy and staying positive.  We all need that. 
I read a post a couple of weeks ago that referred to being open to the lesson that a challenge in your life is trying to teach you.   That the lesson keeps being presented in form of a challenge until you learn it and can move on.  I must have some lessons that I'm not 'getting'  lol

These are the simple lessons that I am learning
Stand up for yourself.
Don't be a bully but don't let people push you around.
If you think it is the right thing to do then you should probably do it
Listen to your heart
It's ok to be mad.  It's not ok to be mean
Be nice to people, even the people you don't like
Everybody has a story to tell.  Don't hog the story time
Say 'please' and 'thank you'
.....more lessons to come but, like a kindergartner, I'm starting with these.

I'm tired.  Really tired.  Knocked flat on my back last week and just pure exhaustion from the emotional and physical work of getting my mom settled.
For the first time since moving to AZ, Illinois did not feel like home.  It still doesn't feel like home here but it's getting that way.  I actually missed stuff back here this time.
This morning I'm grateful for a good cup of coffee, grateful my feet are not cold and grateful that I have a man who loves me a lets me sleep.
And, as always, grateful for you guys.  Looking forward to getting caught up with your blogs!
xo linda

Flat on my back and looking up

It has been a long couple of weeks. It's really been tough. I saw a post on Facebook [of all places] that sort of made things click for me "Anyone can give up, it's the easiest thing in the world to do.  But to hold it together when everyone else would understand if you fell apart, that's true strength"
It occured to me, what is the point in falling apart?  In fact, what would falling apart even mean?

Honest to gosh I've been down.  Flat on my back.  I don't really think it's depression I just think there is to much crap that I have been wading thru.  Work, family, friends, health.  BLAM!  I thought 'my house' was pretty much in order/under control.  I guess not. Not even close.

It's funny what happens when everything turns to shit.  Not much.  The world doesn't stop turning. You still breathe.  You still have to get up.  You still have to work.  The cats [and Terry] still need to be fed.  Partially due to stress and partially due to this damn MS,  food just doesn't taste right so I've lost 7 lbs.  I needed to for health reasons so I guess that's a bonus.  I know that my mood has been 'off' at work and have been assigned to either Continuing Care or Acute Care for recent shifts.  Both roles are kind of independant of the other staff and I could 'do my own thing' with patient care so that was a bonus too.  Less conflict in getting the job done for the patient.  My personal calls and personal texts to coordinate things back in Illinois for my mom were slightly more under the radar and frankly I didn't have to deal with other people/co-worker's shit at work.  You broke a fingernail?  Guess what - I just don't care.  Go away.  Not the way I usually would respond but it's been a pretty unusual few weeks. Part of me feels bad that I was distant and self-absorbed.  The other part is working on getting off my back.  Being slightly more out of sight at work also meant I could focus more on work when I wasn't in the throes on drama with my family.  I managed to get caught up with some required computer classes and finished a project about Pediatric Neutropenic Fever that a doctor and I are working on .

Being at work was sometimes easier than being at home so I had to invent tasks to keep busy when I was at home so I decorated for Halloween and made a quilt.  Isn't that odd?  In order to save my sanity I turned unintentionally to things that used to make me happy.  The process wasn't the same.  I didn't really take enjoyment in doing either but it does make me happy to see them completed.  I haven't decorated for a single holiday since we moved here almost 2 years ago.  Funny that I should do it now.

I'm leaving for Chicago in the morning.  I didn't know what to do.  Damned if I do and damned if I don't so I have to do what feels right in my heart - that is helping my mom. Flat on my back and looking up I had to do what was right for me.  I'm surprised [and a little hurt] that I didn't get a little more understanding at work.  A couple of co-workers switched shifts with me but there was still an uncovered shift that would not be excused [sigh] This afternoon a brand new assistant manager [brand new as in today was his first day!] suggested that I apply for Family Medical Leave Act since I am my mom's POA for healthcare.  Such a simple solution that would have eliminated so much stress in the past 2 weeks.  So simple and it's done.

I ended that long standing friendship.  Well, not really.  It ended a few months ago.  I just ended my struggle with it.  There is a certain amount of sadness but mainly there is just relief.  Since my decision to let go I haven't had that daily 'what have I done wrong this time' feeling.  I haven't looked at my phone 20 times a day to see if I missed a call or text from her.  I haven't thought once about crying on her shoulder during all this mess and been crushed when she didn't answer.  For 30 years we called daily . . . sigh.  It still hurts but I wish her well.  It's just time to move on.

The MS symptoms have been driving me a little nuts.  I realize that I am so lucky to just have sensory issues right now but sometimes they are maddening. In a way the MS symbolizes so many things in my life.  I just want to fight things and fix things.  Set things right and true. Unconsciously I try to draw conclusions between the symptoms and things I have eaten or activities I've done.  Is my face more numb today?  Is it because I had wheat?  Is it because I had a Diet Coke?  It's constant. Guilt and more guilt.  Guilt because I'm so self-absorbed of late.   Guilt because I haven't been as health-conscious as I should have been for 55 years. A serious medical condition holds up a mirror and you can't help but wish you would have . . should have . . .  need to . . and yet change is so hard.  From the time I get up in the morning to the time I go to bed and even if I get up in the night to use the bathroom I'm constantly taking inventory.  Is it more?  Is it less? I'm trying hard to just stop.  Stop the constant inventory.  Remember that part in Ghostbuster's when Dan Ackroyd tries not to think of the StayPuft Marshmallow Man?  LOL  It's kind of like that.  They say knowing is half the battle.  Maybe I'm halfway there?

I'm going to miss Terry.  He's such a good man.  I spent a good part of the day cooking and I'll spend a bit of time tonight hiding notes for him  :-)  It will be a relief to get my mom settled.  It will be a relief to manage her care since no one else has managed to do so. I'll get to see my daughter and spend a little time with her - I cannot begin to say how much that means to me.  I have no idea if I will be able to see my son or my grandsons and I'm trying to not think about that.  My tenant broke her lease and I have someone scheduled to see the place tomorrow night.  Timing was perfect for that.  My best friend is picking me up tomorrow and returning me to the airport on Tues.  I'm sure we'll be able to squeeze a couple of lunches in  too.

There seems to be a little light at the end of my tunnel.  I recognize the need to stop struggling and to just be still.   Flat on my back has made me appreciate that there are things real and true and cherisable in my life no matter what shit I'm wading thru. 
You guys are part of that.  Sharron, crow, John, SD - I love reading your blogs. I so appreciate your comments and support.  Thanks for being part of my litmus paper.

Difficult week

The week started out innocently enough - a Sat morning call to my mom to see how she was doing.  I had called her a couple of times during the week because her back had been bothering her.  Waiting for her doc appt on Mon was out of the question so she called 911 and was taken by ambulance to the local hospital. Because she was a bit confused and I called back and spoke with the paramedic to give them a rundown of her allergies and medical history and let them know I was finding her a bit confused but assumed the pain was a contributing factor.  And that's where it fell apart.
I waited 45 min to call the hospital to speak with the ER nurse.  I don't recall ever seeing or hearing my 82 yr old mother crying and she was that morning.  She's forgetful sometimes but couldn't seem to figure out how to write down my phone number to take with her.  She also told me she was taking her ibuprofen every hour instead of the 600mg 4 x a day as we had discussed the day before.  I was 1700 miles away, concerned and wanted to discuss my concerns with her nurse.  Who didn't take my call.  Or the call 1 hour later.  So 2 hours after the first call I got a bit snippy and was put thru. [I don't like getting snippy]
It seems they had given her a shot of morphine and were getting ready to discharge her home.  Without an xray.  without labs.  Mom had told her about taking ibuprofen but left out the details of how often and dissolved to tears when the nurse [who was still on the phone with me] turned to my mom and said 'Why did you lie to me?  You need to be honest' Whoa cowboy!  She's confused not a liar!!! She was also denying being hypothyroid and not taking her medication because she 'doesn't like the way it makes me feel'  Also not a liar.  Confused.  Back on the phone with me my mom wanted to know why I said all those things about her to the paramedics.  Things!  What things??? Medical history and allergies to penicillin and nitro [SHE calls it an allergy, not me], what little I knew about her back pain [no injury that I knew of]  and that's it. 
Enter my children.  I was off the phone with the nurse before they got to the hospital.  I text Rachel to remind them all that Grandma is also diabetic, newly diagnosed and I had omitted that.  At the hospital mom denied being diabetic or having a thyroid problem.  Somehow, between my mom, my son and the nurse my mom had the thoughts that I'm trying to get her committed.  What??? Admitted for pain control but committed???  Where did that come from?!  They are also convinced that I am lying about her thyroid and diabetes.  Seriously?  WHY would anyone lie about that?  All of a sudden MY mental stability is brought to question.  The only thing I was confused about was her allergy to penicillin - both my kids, myself and my dad were allergic to penicillin but not my mom.  Thrown in my face is my own forgetfulness, whether I'm even telling the truth about having MS and all of my past failings - lousy mother, lousy human being, that I'm a pathological liar and that I abandoned my kids when they were young [I guess that is what he is calling my retired parents watching my kids during the day while I worked] It escalated to epic proportions.  Screaming over the phone.  It was a bad bad day but my mom ended up being admitted to the hospital [after her ER discharge they found she couldn't walk] and her pain was starting to get under control.
My mom was hospitalized for 6 days.  Guess what, she IS diabetic and her thyroid is nearly not functioning - just like I said.  Her doctor believes that her forgetfulness and intermittent confusion is directly related to her thyroid condition and that it should improve once she's on her medication for 2 weeks.  She was still in too much pain to go home so she was transferred to a rehab center for pain control and rest.  Funny isn't it?  She went from being discharged from the ER to a 6 day admission and transfer to rehab.  Guess someone screwed up. 
My daughter and I are ok.  She has been a godsend, picking up things for my mom, managing things in the hospital .  I have a huge amount of guilt for my not being there and putting this on her but I think she and I will be ok.  My son and I are not and it is highly questionable whether we ever will be again.  Things were said that I cannot ignore and there is a poisonous hatred for me that I do not understand.  I love him because he is my son but I will not allow another person to speak to me that way ever again.  That means limited if any contact with my grandsons and my heart is       broken.  I get to talk to Seth online occasionally but it's clear that 8 year old has heard stuff he shouldn't have heard.   I don't want him to get in trouble for talking with me and I don't want to burn that line of communication with him.  That is one the hardest parts.  That our family is torn apart and Rachel has a mom and a brother but has to keep those relationships separate . . there just are no words for that sadness.
The rehab facility is a joke.  Mom was there for a day and half when I realized she had not yet received any pain medication because, get this, they didn't get it ordered.  She's there for pain management and yet no medication for her pain.  I was not a happy camper as the nursing director found out but this 'squeeky wheel' got her pain meds ordered .  The physical therapy is also a joke.  No real goal for her therapy except that she 'goes to therapy'.   No strengthening.  No working on mobility.  The goal is for her to 'get to therapy'  Mom was supposed to be in rehab for 1 - 2 weeks but is trying to check herself out today.  I can't blame her though I don't really think she's ready to be home by herself.  Nobody does except my mom.  My suggestion for her to come 'vacation' with me was met with suspicion of intent [really?] and she has made it clear that she does not want me to come there. 
I don't know what to do.  Mom's mad.  My son is mad.  I'm afraid I'll make my daughter mad.  The powers to be at work will be mad if I take this time off.   Damned if I do and damned if I don't.
 
No comments please.  I just feel like my family has fallen apart and I am sad to the core of my being. Having my sanity questioned by my family [my family!] has shaken me to the core of my being.  Having my memories of my kids happy childhood thrown out the window threatens to destroy my definition of me [if that makes sense]  My whole life revolved around my kids.  If that was a lie then who am I?  Who AM I?
I doubt that I post here again.  It's been a really shitty year and I want a 'do over'.  There's just too much pain and too much vulnerability to keep doing this, this blogging.  I don't know how to fake happy and I'm tired of writing about sad.  Hell, I'd just like to experience happy for a little bit without having my world crash around my ears. 

Thanks for being a life boat.  I love you guys.