chin up and over that plate


I was really thinking about cancelling my Physical Therapy dude this morning – I’m just tired – tired of the cast, tired of the swelling, tired of the situation, tired of the wheel chair – tho Bob and I had a lot of laughs with the battering ram foot thing straight out in front trotting around town. This is not really any fun at all and sometimes I feel so down about it – I’m a shut in till someone comes to take me out and right now that is 1x per week via Bob – shit, I’m losing all color  – I’m going to look ghost like in another week.  Chairwoman Mao Mao has been great – she even lays next to me at night so I can pet her – but only for a little while….tho last night I think she sensed I was feeling blue and let me keep my hand on her till I fell asleep – of course she was in my face this am when I woke up – with the “where the hell is my whipped cream?” face.   I will get ready for Robert the Physical Therapist and hope he doesn’t find the crutches I’ve hidden, I simply cannot use them.  The walker is okay but anyone without truly fleshy palms, bike gloves and foam wraps is a big fat liar if they say this is great.

I was really bad yesterday; took off the air cast and removed the bandages….then wheeled into the bathroom and stuck both lower legs into the bathtub….filled it with water (not that I could feel the temperature due to the “underlying conditions aka UC”) and just let them soak….then because Sharhonda (seriously her mother could not decide – she told me) was not here threatening to do my legs with an electric razor, I did the unthinkable….no cuts, no bleeding to death due to coumadin….now that made my Sunday.

My Saturday was great.  Bob arrives and I basically did the butt and hand thing to get down the stairs.  The wheelchair is so heavy – so this is like weight lifting in the gym for Bob – who got that downstairs and into his car.  Off we go to Ralphs, Trader Joes, Sprinkles (he needed for his daughters’ 21!) the pet store (I broke the litter scooper) for a new blue scoop; and then home to drop off the refrigerated goods.  Next a beautiful Mexican lunch down in La Jolla where the sea breeze was noticeable…the pelicans flying in formation, and Bob and I just the two of us watching the people and world go by like normal….then to Costco.  I send Bob off to gas up and a shopping cart gatherer pushes me up the ramp. I wheel myself to pharmacy, pick up drugs and head out.  Bob has not been able to find a parking space and I figure he is out in front (instead of side where he dropped me off) so.. I put the hot pink Prada Bag around my neck, get the bag of drugs into my mouth and head down the ramp – WHEE WHEE WHEEE I looked like that pig on a luge from the ads during the Olympics, tho I was going much much faster… the bottom a startled senior citizen just looked over at me and I said – that was fun!  Wheeled my way over to Bob sans the drugs in my mouth and pink purse around my neck… I do know how to have fun now don’t I?

Dad and Jody are still back east waiting for power. I guess it is like Waiting for Godot (one of my favorite plays ever) and they have reservations for this Saturday to fly out but we shall see.  Dad reports that they are comfortable although I am sure it isn’t. They have a block of ice in the fridge and keep daily food there. He is cooking on the barbecue via propane and she bikes around for supplies. . . they don’t want to use the gas in the car unless absolutely necessary as they can’t get gas pumped due to the power being out. Once the power is back on they will be able to get the trees that were downed out of the way of the wires for all else they need.  What a disaster this storm was. I’m just grateful I’m here rather than there – I can see that being a really big problem for them.  I’m hopeful the bakery opens that makes the good Babka before they come – you know who like that!

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Get out in front and lead that Parade!

So. . . it has almost been 10 days since I stood up to “pack it in” and hit the hay when I crumpled to the floor and found out that I broke my left ankle.  It doesn’t look like much on the x ray but from the way it feels it is a “MUCH”….still swollen and discolored (tho not as bad as the other day when I almost lost it and barfed!).

The Parade began after my very own Dr. Fink sent Scripps home health – first a nurse to check everything out.  I scared her (worse than Halloween Fright night) with my antics on my office chairs rolling around here like I was on one of the kiddie coasters; a whole new meaning to “run kitty run” so she sent out the troops big time. I now have (in addition to the small cane that it took the rehab folks almost a week to convince me I needed) crutches. . . although I can’t use those at all – just ask awesome amazing Bob, a walker; my palms hurt so much from using it Monday even the Physical Therapy fella said it will take a few more days for that pain to subside..and today – the Cadillac arrives – The Wheel Chair.

I’m just going to collect all the medical equipment I can ever use for ever.  The last will be the ultimate – the Ferrari of medical equipment – a scooter; It will reduce the amount of work anyone will have to do for or with me when I’m out during this episode – aka “Leading the Parade”….because you see if you don’t get out front of all these folks, doctors (read everything you can and ask a zillion questions – even two times or 10 times until you understand), nurses (ask them to double check on all their reports because sometimes you just have to make sure they have your name and your file in front of them — don’t ask I won’t tell) my own Sharonrhonda (her mother could not decide so combo’d them) who carefully washed my hair and let me use a pedestal low table as a shower aide yesterday — Oh I smell so good now; Ms. Liu who replaces the vampires at LabCorp who just gave a finger a little prick (that I could not feel) and immediately gave me my INR (now why can’t they do that at LabCorp instead of blowing out every vein I have in my arms and hands???); FedEx who delivered 7 boxes of stuff to replace the Time Warner Cable stuff I have (this is going to be interesting!) and my dear little neighbor Nicole and her significant other George upstairs who brought me a baked potato from Wendy’s (did I mention I don’t eat fast food??? but this was perfect!) who now has Strep Throat (gargling with salt water 3 x a day myself now) . . . so it ain’t a village as much as it is a total Parade and yours truly is getting herself out in front and leading them all down the path (to ruin?) who knows but it sure is fun!

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This is getting old

So each day the feet hit the floor, the eyes adjust to whatever kind of light I am seeing (mostly pitch black). . . I try hard not to disturb or step on the Chairwoman who has a habit of hanging out close by me before even I know I’m going to get up. . . and each day I so wish I could write “I’m all better”.

It is all the “same” – and the “same” is what I am dealing with.  I’m secretly very happy that folks aren’t calling all the time asking me how I am – I’m the “same” gets very old.  So what can I expect? No one knows.  Would it be better to have something identifiable?  Not so sure I want to be identified at having something.

Thinking about relationships; pretty sure I’m in one but I’m not sure it is a good or bad thing to say out loud. . . and I’m not sure if he is ready to say that word…relationship. So once again I don’t want to be identified as having something that may get old and then I would have to explain that. 

Then again, I think I have to say – I’m a little old (at least a little older than yesterday)!


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The weekend is here. . .my cup runneth over

Before it starts let’s go back to yesterday . . .  my amazing neurologist ordered MRI’s (brain, thoracic, and spine) with and without the dye – so I was looking at 2 hours +/-.  The “sister of my heart” was threatening to drive down from Agoura Hills to be there; my amazing Bob also was threatening and after taking a poll your independent I can do it myself girl gave in to amazing awesome Bob.  Given that I now had a ride to the MRI place (2 miles away – in healthier times I would have walked there and back….) I indulged myself by taking a little something to help me be drowsy for the “Tubular Times” (not Tubular Bells – do you remember the Exorcist?).  We got there at 2 pm and left a little after 5 pm.  My awesome Bob was there waiting for me with his arms open for a huge hug and hold.  He took me to Lornas for a delicious dinner. . . when I got home and called Pam (see above sister of my heart) I just burst into tears.  Pam explained that I had just experienced “cup runneth over joy”.  I am filled to brimming on that cup – this man makes me life happy.  Best $100 bucks spent ever!

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Prednisone Food Frenzy

so, I had a few grapes….and a few more, then I read the receipt and realized that my prednisone hunger frenzy meant I ate almost 3/4 of a pound of them. . . which got me to thinking, my awesome Neurologist told me that there is no reason why I can’t have a little wine in moderation with the 9 other medications I’m on. . . I think he really is the best NEUROLOGIST alive. . . Thursday we are re MRI imaging brain, thoracic, spine. . . I am hoping I haven’t lost my mind and it will show up there someplace! (you do know that if you try to see if you spelled prednisone correctly it comes up with PRISONER!) Okay the heat got me!

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Bumps in the road: Demyelination – Polyneuropathy

16 August 2012

I can only move my head and arms.  I have no feeling from “z boobs” down.  There are monitors all over me and nurses, doctors, CNA’s and LVN’s every hour; and the turn team every 2 hours moving my limbs and my body to avoid pressure and sores.  I’m not comfortable or uncomfortable. I admit to being frightened but I also think of this as just something to get over with and get over with quickly.  Who has time for this?  I’m finally feeling “AMY” again and really?  Really?  What is this all about?  How did I get this?

Here it is September 29, 2012 and there are no answers only questions.  There is no name just a description.  I think the side issues, a nuerogenic bladder and bowel, a blood clot, and what I refer to as radiating shooting pain are things to keep me distracted from the main event.  Have or are the medications helping? When will I feel my legs, or my waist or butt again? I think I have read everything there is and then some about everything that seems to be in the realm of this so I know that we are treating symptoms and not the main issue because who knows what that really is.  I can’t help feeling like a Dr. House patient. . .  I do have two “Dr. House’s” so I’m feeling quite good about that.

One of the side effects of all of this is the “shooties” in my fingers. . . so be patient, when they recover I can type out more.

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Living Life My Way

Living Life My Way.

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Living Life My Way

My kids are grown up, my dad is in his 80’s, I’ve worked hard, played hard, and have had my share of speed humps on the road I’m travelling.  Perhaps you will ‘live and learn’ or see the actions and reactions…or just find that I’m quirky or old fashioned.  “It is what it is” I surmise. .  and it is time to share all those feelings, passions, lessons learned, wishes, dreams, and memories in one place.

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