Wednesday, July 30, 2008
One of my favorites is http://accordingtok.blogspot.com/ (I am going to have to learn how to make nice little connections in my text, but right now this is the best I can do.)
Kate, who writes the blog, is a smart and funny young woman who I would be proud to have as a daughter. She is a physician and her compassion shines through in her postings. She is going to do awesome things.
Anyway, Kate’s latest posting was a Top Five You Tube Videos meme. Kate invited people to pick it up and I thought it sounded like fun. So here are mine:
Lakme/The Flower Song
I loved this way before British Airways (ruined it) appropriated it for their adverts.
My friend Michael sent me this and it makes me laugh every time I watch it. I will never be able to sing this hymn in church again with a straight face. Thank goodness we don't sing it that often. It will be like being in church on Good Friday and having “Always Look On the Bright Side of Life” go through your head over and over. Yeah, the giggles in church on Good Friday. A sure fire way to take the highway to hell.
I agonized over this or Pavarotti singing Che gelida manina from La Boheme. I know he became somewhat of a caricature towards the end, but oh my God, that voice. Nessun Dorma won.
Woody Allen/Love & Death
Love and Death is one of my favorite movies. It is so goofy and funny. This is the first ten minutes. Do yourself a favor and rent it.
What more can I say!?!?! Jersey Girl is awesome live, but there’s nothing like Rosalita. Gotta love Bruce. Especially when you live in Bruce Country. :)
Can you imagine having that many people just adore you?!?!
Anyone else want to play? It is really hard to pick only five. Let me know if you join in so I can check out yours too.
Hmmm, that sounds a tad salacious. Not quite what I intended...
Monday, July 28, 2008
It wasn’t exactly fun, I will say that. But it wasn’t the horror show I was anticipating.
Things I hated:
- I had to get undressed down to the skin. Honestly. For one eye. I didn’t even have to do that for my shoulder surgery.
- My wrists were bound with gauze and tethered to the operating table, so I wouldn’t touch the sterile field. As if. It was NOT a good feeling.
- I wanted to be sedated to the extent that he could tell me he was sewing my eyelid to my chin and I would offer to help. Unfortunately, I wasn’t. :( (But it was enough to get the job done.)
- Before the surgery, they wrote on my forehead with marker, in large letters, over each eye. “C” for correct and “W” for wrong. I felt as though a sizzling brand had been applied. I know it was done for safety. And that's a good thing. But add this to the fact that I was naked under a hospital gown, had a disposable surgical cap over my hair and had no makeup on, the cringe factor was very high indeed.
Things I liked:
- The staff was super kind, friendly and professional, to a person.
- The surgery center was very nice.
- It was over quickly, in just a little more than an hour.
Dr. M., my eye surgeon, was teaching someone about the procedure while he was doing it (he literally wrote the book). So I learned a lot. Actually, more than I ever wanted to know. :)
I now look like one side of a prize fighter. Not even black and blue. Just black and swollen, with lovely blood red for decorative touches.
But it is done. And my eyelids should be symmetrical now, with the right ones functioning properly. I hope I don’t sound hideously vain. It really was a reconstructive surgery.
I am lucky and grateful.
Sunday, July 27, 2008
Last time, with my shoulder, I was so full of drugs that by the time my surgery rolled around I was chipper and enthusiastic.
This time I am FREAKING OUT.
The problem I have is that the upper eyelid on my bad eye is drooping and the bottom eyelid is, I don’t know, doing something funky that the surgeon explained to me but I don’t see it so, whatever, just fix it and don’t tell me about it.
So he will fix it. He will fix it by SLICING MY EYELID OPEN WITH A SCALPEL!!!!!!! WHILE I AM CONSCIOUS!!!!!
And my therapist is away. IN ANOTHER COUNTRY!!!!!!! Boo hoo hoooooooo!
Dang, I knew I shouldn’t have let go of her leg.
Oy. I need to calm down.
AAAAGGGHHHH!!!!! Unsuccessful calming down!!!
Alright, I will try again. With lots of lovely Bach and Mozart and Haydn and relaxation CD’s that tell me, nicely, to stop acting like a nut.
Keep your fingers crossed for me everyone. :)
Saturday, July 26, 2008
This year I am working as a temp after 10 months of being out of work. I definitely no longer consider myself hot stuff.
I am so, so grateful to be back at work. But my ego has taken a major bruising.
As the boss, I had my own office. I came and went pretty much as pleased, although I did, for the most part, work 10 to 12 hour days and had a three hour round trip commute.
Now, I work on a computer at a conference table in someone else’s office. I will be moved when this person comes back from vacation. I don’t even have a phone. And literally every minute of my day has to be accounted for. The work that I am doing is billable back to another organization. So I keep a spreadsheet of how long I spend working on each patient’s record that I review and then make notes on. We have to hand our numbers in at the end of each day. If your minutes are low, you don’t last long. One girl in the office stopped drinking water during the day so she wouldn’t have to go to the bathroom too often and cut back on her minutes. There is dead silence all day long. No chit chat or socializing. Just the constant sound of urgency.
The woman who ‘trained’ me spent five minutes explaining what to do. She appeared amazed that I got it the first time. She was so condescending I had to bite my tongue practically in half to keep from making a sarcastic remark.
So what I am trying to remember is that, despite the pressure, I am much better off than I was when I had to deal with:
- Moronic CEO’s who made bad decisions and then blamed them on someone else. Like me. :(
- Bullying CEO's who made bad decisions and then blamed them on someone else. Like me. :(
- Worrying about the budget.
- Scheduling staff.
- Staff that didn't do their job.
- Staff who called out.
- Staff who said the building was toxic and making them sick.
- Staff who were toxic and made ME sick.
- Staff who had fictitious ailments.
- Staff who had real ailments.
- Staff who were insane.
- Staff who threatened to kill me (yup, it really happened; more than once)
- Patients who were cranky.
- Patients who were insane.
- Everyone’s problems.
Monday, July 21, 2008
It has happened so fast, I have not even gotten used to the idea yet.
I’ve been offered a temporary, three month position doing work for a large physician practice management organization (that is what my background is). They wanted me to start immediately. And so I will. :)
It has been so long and so hard, I am having a hard time getting excited or even feeling happy. I am relieved. It is a reprieve. If they like me, the assignment could be extended.
Oh my goodness. I feel as though I can breathe again. Although it is going to take so much work to clean up the mess this debacle has left behind. But I can only take on one thing at a time.
Thank you everyone for your good wishes and prayers and encouragement. Thank you to my family and my parish family and my friends, especially Christine and Cathy, who stuck by me and endlessly offered support and love and hope.
I have so much to be grateful for.
I’M WORKING AGAIN!!!!!!!!
Sunday, July 20, 2008
Met with Dr. Wonderful this week to check on my shoulder. I was delighted to demonstrate my prowess in doing things like…touching the top of my head. He appeared to be delighted as well. And he told me not once, not twice, but THREE times that I looked good. GOOD. With a big smile. No back pedaling. I was quite pleased.
As a matter of fact, about a dozen different people told me I looked good this week. Or even ‘great’. It has been very cool. Although it has left me wondering if there is an epidemic of poor eyesight going around. Hmmm...
Ordered my dress for my son’s wedding. The Herman Melville special, as in Moby Dick, THE GREAT WHITE WHALE. I am dreading trying it on as I have lost two pounds total. Probably in my earlobes. Oy.
So desperate times call for desperate measures and Mary Kate and I are both starting…dunt dunt dunnnnn…Slim Fast tomorrow. Nourish shmourish, I just want to be thin again.
My best friend, my sister and my therapist are all either away or going away this week. Oy. I am already decompensating.
I am having surgery next Monday to correct a problem on the eye I lost when I was a child. I am a little nervous about it, especially since ALL MY SUPPORT SYSTEMS WILL BE AWAY. Traitors. :(
Oh, I'm just kidding. They are the best people in the world and no one deserves a break more than they do.
The surgery will affect my appearance, theoretically for the better, by improving the function of the lids on that eye. But it's a little scary to think of something going wrong that would be so visible. My eye surgeon is supposed to be the best in New Jersey and he is very, very nice. I do trust him.
But God knows I don't want Dr. Wonderful to have to say next time he sees me, "You look...hmm...just so-so."
Thursday, July 17, 2008
Not working means not having money for things like…paying the bills.
I’ll bet you thought I was going to say something like not having money for going to the movies or buying books or going out to dinner with friends. Well, that is correct. All those things are out as well. Things that were part of my life before. So now I have this idea that I am being punished for having been so shallow and self-indulgent, because I know it was a privilege to have those things that I never gave a second thought to. I irrationally think maybe I’m being penalized for taking my luxuries for granted.
No, more than anything, being unemployed means you cannot pay the bills.
It means you no longer even answer the phone if you don’t recognize the caller ID.
It means when the plumber, the nicest man in the world who has been doing work for you for years, fixes your disgusting outflow pipe you ask him if you can pay him the following week. But then you forget because some new disaster has arisen. And he sheepishly shows up at your back door one day and at first you are confused and think he has stopped by to say hi which would be very odd and then you are horrified to remember you never paid the man and you write a check for $240 even though you don’t have it.
It means eating almond butter for breakfast, lunch and dinner some days. But that is ok, because you like almond butter. It is full of protein and lots of lovely fat.
It means going to the neurologist, feeling so, so sick, and having a GREAT BIG NOTE on your chart that you have to see the billing person before you see the doctor. The billing person, we’ll call her Mean Petty Little Cow, is a 20-something snot with a flat affect and a personality disorder. She treats you as if you have just robbed the Bank of England with a machine gun and taken out 20 people because you have a balance of $115. She sneers (literally, I am not kidding) when you offer to pay half and lectures you on financial responsibility. This despite the fact you spoke to someone else the week before offering to make payments and they said that was fine. And then to add to the humiliation, when you finally are allowed to see the doctor, you can’t stop crying.
It means owing everyone you see money.
It means not being able to pay your mortgage and watching your beloved home slip further and further out of your grasp.
It means holding your breath for so long you almost forget how to breathe.
I’ve sent out hundreds of resumes. And it’s a good resume. I have a Master’s Degree and years of experience. But I have had six interviews in ten months and no offers.
After months of worrying, sleepless nights and enough nervous energy to use up a bazillion calories (although I still stay fat), all of a sudden one day the worrying stops. It could be the decades of therapy. It could be the Cymbalta. But it also could be that I am just incapable of worrying for one more second about something I have absolutely no control over. I am simply worried out.
Just because I am not worrying [as much – I will never completely stop worrying, sheesh] does not mean I don’t care. It mostly means I have stopped bursting into tears in public. I still think about my dire financial state almost all the time.
At physical therapy the other day I was doing leg curls designed to strengthen my legs. My mind was focused, as usual, on my problems. So this was me:
Legs up: Can’t pay the mortgage.
Legs down: What am I going to do?
Legs up: Can’t pay the mortgage.
Legs down: What am I going to do?
It was quite the depressing little rhythm I had going. All the while I am idly looking around the room, watching the other patients, looking out the window, looking at my feet going up and down, when my eyes rested on this:
And I thought, why on earth is there a bottle that says “PRAYER” at physical therapy? Spray prayer? Is it a joke? And then the light bulb came on. The bottle actually said “SPRAYER” but was turned so the “S” wasn’t showing.
So I took it as a sign. This is the action I need to take. There are no easy answers or solutions. Nothing is going to fall into my lap. Therefore, I have been praying more. Not for specific corporeal things, but for support and direction and strength and courage. I think we all need these things the most. Everything else can slip into place with those gifts.
Good thing the bottle didn’t say “TAKE THE GAS PIPE”.
Sunday, July 13, 2008
If the label on the chopped meat says “Use By Jul 10”, do not sniff it, shrug your shoulders and use it on Jul 12.
A boo-boo belly will result.
Saturday, July 12, 2008
I had my port put in and then each day I just flushed it, hooked up my little ball and when it was finished, flushed it again.
2) Let it sit for the powder to dissolve.
3) After it is dissolved, draw it up into a syringe and inject it into the bag of Saline.
4) Attach the tubing and prime it by allowing the medicine to go all the way to the end, so I don’t end up with 10 cc’s of air preceding my infusion.
6) Flush my port with Saline.
7) Attach the IV tubing.
8) Set the tubing control to 125.
9) Open the clamps
10) Sit in one place next to the pole for an hour ( because if I move the pole around, the infusion stops running).
11) When it is over, clamp everything again.
12) Detach the tubing.
13) Flush my port with Saline, then Heparin.
14) Clamp my port.
15) The end.
What year is this?!?!
Then, when I went to administer my second infusion, I find my port was leaking. I called the nurse and she said try to tighten the connection. The connection that was under a ton of tape and a piece of Tegaderm (a small sheet of protective plastic). Try to tighten it with one hand.
Guess what? Oh, you are so smart!! It didn’t work. The IV wouldn’t infuse and I had to pull the port. Which meant I was going to need another one inserted.
The same very, very nice nurse came back. We picked a lovely, plump vein in my right hand. In went the needle. In didn’t go the little tube that would deliver the medicine. She kept trying, very gently, but I knew just by looking at it, it wasn’t going to work and I was going to have to get stuck AGAIN. After about five minutes she apologized and gave up.
Stick number SIX took.
Because this has turned into such a freaking ordeal, I developed a nurturing routine for myself. I might as well enjoy myself instead of getting totally pissed off.
So my set up is as follows:
And a lovely high calorie drink. Because I deserve it.
There’s a lot of love on my nightstand.
My bed where I will relax and put my feet up
with tons of pillows, my knitting, my laptop
and, of course, Bella.
On the plus side, within one day my legs felt as strong as if I were normal. My back pain has disappeared. My other symptoms, which I guarantee you would rather not hear about, are diminishing.
Friday, July 11, 2008
He is sweet and funny and breathtakingly gorgeous.
I found these actions hilarious and made no attempt to stop him. The more I laughed, the more he clowned.
Mary Kate sternly told me I was a bad influence. Hey, what are Grandmas for?!?
I mostly sat and watched (and encouraged anti-social behavior) while Mary Kate was running around playing with him. I didn’t even think he was paying that much attention to me. At one point I got up to go in the house and get a drink. He stopped what he was doing and ran after me calling “Nana! Nana! Nana!”.
Be still my heart!!!
I am trying to take good care of myself for several reasons. But he is a big one. Twenty years from now, I want him to know me. I want to be sure he knows how much I love him.
I want him to still miss me when I walk away from him.
Thursday, July 10, 2008
Ugh, what a bummer.
I am one of the lucky ones. Although TM initially paralyzed me, I responded to IV steroids and got better. Better-ish. It left me with lots of deficits, dysfunction, numbness and weakness. But some people never recover at all and are crippled forever. Some even need to be on respirators.
This scary stuff is caused by lesions on the spinal cord that strip the nerve cells of their protective coating, the myelin. It’s called demyelinating. Your level of illness depends on where your lesions are. My biggest one (yes indeed, I have an entire collection back there) is on my cervical spinal cord. That causes just sooooo many things to malfunction. Ahhh well.
An intravenous steroid, in this case Solumedrol (IVSM), is the thing that will calm the lesion down and make me feel better. But it comes with a price.
First, after a few days of steroids, I am, let’s see, how can I put it? A raving lunatic. No sleep, non-stop talking, non-stop activity. A VERY clean house. Let me tell you, this is not fun to live with. The one child (a 22 year old CHILD; oy) who still lives with me (who I am trying to pry out with a crowbar; does anyone want her?) just rolls her eyes. This will be my fifth course of IVSM in three years, so she is used to it by now.
Then there is the physical stuff. A hep lock in my arm for days, no showering, nasty taste in your mouth, potential kidney damage, potential bone damage, potential diabetes, aching all over like you have the flu and feeling like you have been hit with a truck when it is done. The first time I was on IVSM my blood sugar went so high I was on insulin for three weeks. Some people develop a ravenous appetite. Amazingly, I don’t. I actually lose my appetite. Cool.
But it usually does help, so there is that.
Maybe, as I am up all hours with steroid induced energy, I will write dozens of brilliant and witty posts for my blog!!! Now that is something to look forward to.
This is a short video related to Project Restore at Johns Hopkins, which is doing research to develop a cure for demyelinating diseases like Transverse Myelitis and Multiple Sclerosis. Alysse describes exactly what it is like to develop TM and the losses we experience when we have it.
Sunday, July 6, 2008
I have been back on track, mostly, with food that is good for me. Mr. Spickles supervises.
Tuesday, July 1, 2008
That was 31 years ago, but the moment is as vivid as five minutes ago. That is what 31 years are. Five minutes.
Did I mention he is a lawyer?
He and his fiancée, Claire (a lawyer too), have just bought a lake house in the Adirondacks where her family has summered for almost 100 years, in the same adorable cabin. They invited me, so I took a ride (a FIVE HOUR ride) up this weekend.
Did I mention Claire was a lawyer?
I am not a piney-woods sort of girl. I am more of a Westin Heavenly Bed, with a spa a few floors away sort of girl. But the charm of this place is inescapable. Stepping out of the car, you are submerged in the scent of pine. The sky is almost blocked by the height of the trees. It is lovely.
Claire's family (I think there were 1000 of them, but I may have miscounted) welcomed me with overwhelmingly open arms. I felt as though I had grown up there.