Oh, how my heart bleeds for you!

April 1, 2008 - Today has been a frustrating day. I was to get a new script yesterday - the Heart Center was to call it in. I went to the pharmacy to pick it up today and lo, and behold…

…no one had called it in.

The pharmacist tried to call The Heart Center.

THE ANSWERING MACHINE WAS ON.

This bothers me in millions of ways.

I do realise that the medication in question was not something that, if I didn’t have it right now, I would kick the bucket in 24 hours. That makes no difference. It is very important that I have it, however, and thus important that when they say they will call in the script, they do it.

A little background: The Heart Center told me last Friday that I needed to up my dosage of Lipitor. We’re not talking about a small increase. We’re talking about going from 20 mg a day to 80. I was advised to take all that I had left of the 20 mg, divide it up into the 80 mg dosages for the weekend, and call them on Monday - we would get a new script.

Done. I did my part. I took every bit of Lipitor I had…enough to cover Friday night, Saturday, Sunday, and Monday morning. It is now Tuesday afternoon, and I am scrambling like a madwoman to find substitutes.

I’ve upped my niacinamide to 1,000 mg.
I’m eating an extra bowl of oatmeal.
I took an extra pre-natal vitamin, because it upped the B complex.

Diana is going to shoot me for overreacting, probably, but when someone says “you MUST do this”, and I do, and then they fall on their face on the concrete….what am I supposed to do?

We will try again tomorrow.

Remember, I am Pioneer Woman who can only go into town to the store so often.

In the meantime, I have now had two ocular migraines with a headache on the backside of each of them.  This is different from before.  I’ve never had more than an ocular migrane maybe every two or three days, nor have any of them ever spawned a headache of any kind.  There’s nothing like being blind for half an hour during one of these, followed by a blinding headache.  I might as well give my eyes to science, now.  They do me no good at times like this.

I know it’s 3 in the afternoon, but I need to go to bed. I am worn out completely, not to mention medically unhappy.

A little dancing music, please…

March 28, 2008 - I have loads of things on my mind, loads of things to do, and I have alot of energy right now. Part of the energy is the “Hey, it’s Friday! Woot!” mood in the office - and part of it is realising that life is darn good and I’ve got so much of it yet to live.

The last few days, I’ve felt…not really depressed, but….more “reality sucks”. How do you handle that? You just get moving, for pete’s sake, and you don’t give it any more thought than it’s due. By that I mean, “Take your meds, stupid.”

It doesn’t take long for me to come to grips with the knowledge that I need to just cross climbing Mt. Everest off my list of things to do. Oh wait…it wasn’t on there… I’ve also had my 20 minutes of down-time realising I can never be a roadie again. Wait…I haven’t been a roadie for 10 years…. Well, there’s the whole thing about going back to Kosovo….THAT I will probably have to cross off the list, but just with a light pencil mark for now…maybe I don’t have to really cross it off…yet.

Right now I am really pumped about the things on my plate at home. It’s the only plate that isn’t sitting in the dishwasher dirty, come to think of it. And yes, doing the dishes is on my list of things to do!

I don’t accept this amount of tiredness very well. I should be able to do everything I’ve been doing, keep the house clean, take the dog for frequent walks, and shoot rubber bands at the skateboarders who ignore me when I say “Stay off my sidewalk!”. I should be able to continue to rant and rail about the world’s lack of understanding in situations like what’s happening in Tibet (except the WSJ today - good article on the split society in Lhasa), what is now occurring in Basra, and kick the various series that are already in mid-completion up a notch and get things done.

I feel as if I am letting down my friends overseas, though they have not once said that - they just make “kind requests”. I feel as if I am letting people where I live down because I don’t get out and do things, and it is often all I can do to function putting one foot in front of the other; I know they think I am strange. I am letting down everyone else, too, and worst of all, I am letting myself down.

This is not a statement made to garner sympathy, or to hear anyone say, “Oh you are not letting me down!” No offense, but to hear anyone say that doesn’t help me work through getting back on track. There are several people to whom I really do owe hours and hours of concentrated devotion. A couple of you know exactly what I’m talking about, and I don’t intend to cut out things until the doctors tell me I have no choice.

I’ll tell you right here and now, if anything goes, it’s going to be the thing I love least, so you’ll always see me writing, and you’ll see books coming out like mad.

I have done a couple of things finally in areas that are important to me - things I should have done before I had that cold wet towel of “you’re-effin-old!” smack me in the face.  Some of the groups involved were ones to which I once belonged and I rather let them lapse over the years, and others are new to me, but very important:

World Without Frontiers
Reporters Without Borders (Reporters sans Frontiéres)
Amnesty International
UNOCHA
UNESCO
Institute for Multi-Track Diplomacy (IMTD)

Before anyone takes me to task about Reporters sans Frontiéres, I ask that you let me explain why I would join this particularly “over-enthusiastic” organisation.  I’ll do that separately.  Just remember what the Dalai Lama said, “Do not become Buddhist.  Work within your own culture -what you know.”

Also, please understand that what I do with any of these organisations is nothing.  I hold no “power” nor “weight” other than to assist as a volunteer.  I learn, I understand, and I have greater knowledge by working with groups with philosophies similar to mine…and in the case of Reporters sans Frontiéres, I work within the group to build a better understanding of and use of less radical and vehement behaviours. 

As far as my heart goes, I need to talk to Tsappora. Maybe our heart issues aren’t exactly the same, but I need to talk to her and to Mark. I need a little insight and a little encouragement that all is not lost, really.

In the meantime, my philosophy is this:

I’ll sleep when I’m dead.

Inimitability Isn’t Eternal

March 25, 2008 - I’m going to pick up a CD tomorrow for Diana with all my medical stuff on it.  I think it is so cool that I can have all that stuff in one place like that.  BECAUSE all my specialists are within UNMC Physicians, they all have computer access to everything that has transpired with me, and there’s no accidentally not remembering to tell some physician about something another physician said.

Totally awesome, in my book. 

In addition to yesterday, I found out the following today:

The 40% capacity on the mitral side? Yeah, that’s 15% down from when I had the stroke 18 months ago.  It was 55% when I had the stroke.  Now it’s worse.

I have aortic stenosis.
I have carotid stenosis, left side worse than right.

My stroke was embolic, not bleeding, caused by calcification that goes back to the radiation I had 21 years ago - AND the chemo I had 13 years ago.

My cholesterol issues are not from doughnuts, they’re from Daddy.
My high blood pressure still needs to be brought down a good 30 points.

The lipitor was doubled.
Toprol was added, 50 mg. a day.
The lisinopril was doubled.

On a good note, diabetes is not going to kill me. Neither is cancer.

Diana wants to put me in a home to guarantee I take my meds. I’d rather she put me in a mother-in-law’s house with my computer, my publishing company, NPR, the Wall Street Journal, and all my magazine subscriptions (see list on profile page) - and my dog and my gecko, and I promise I will take my meds.

I’m going to probably go just like Daddy, though - *poof* and I’m gone.  I just hope I don’t hit a holiday.

One thing’s for sure. I’m going to make a really beautiful corpse, at least until I’m cremated.

Heh.

OK now that I have that cynical, death-crap out of my system, this is what has to happen, and it has to happen NOW:

I have to lose the tummy I’ve been saving for reconstructive surgery. (Oh, well.)
Moderate, moderate, moderate exercise.
Zero carb diet, no crap out of the vending machines, and I have to not raid the candy jars in Tom’s office.
Always take my pills. I will die without them, and that’s a fact.
CUT the stressors. (I have NO idea how to accomplish that, considering what they are.)

So.

Who’s ready for that series about Tibet?

*********

Since I wrote this, I’ve had a short afternoon of fun stuff after the visit to the cardiologist and before the scheduled MRI, and these are a few things that came out of it:

I went in on a Nebraska Powerball ticket with 4 (I think) other people.  $26million if it happens (I trust Chuck).  I said all I wanted was $100,000, but yoiu know, if I had my chunk of that, I could sink money into the business, and I’d be happy for a very, very long time. 

After talking to a couple of the people in my department, I’ve decided I’m definitely going to write an ongoing series about the idiosyncrasies of this whole ordeal, and if UNMC wants to repost them, then by all means, they are welcome to do so.

I was pretty chipper going in for the MRI, but remembered a few things after I got into the machine:

1.  You take off all your jewelry, etc. for the same reason you never leave a spoon in the bowl when you’re reheating something:  Never put metal in a microwave.

2.  Remember your suntan lotion before you start.  It’s a long, hot 40 minutes.

3.  For 40 minutes you are not to breathe, move, blink, scratch, fart, cough.  All my bones that have to move every 20 minutes freaked out.

4.  Ohmygod.  Gunfire in Kosovo.

Anyway, it is nearly 9.  I am so tired I could almost cry (but I don’t do that), and so I am going to get to bed and try not to relive No. 4 again.

Night- all and this weekend will be the start of Tibet.  If you can find it, look on NPR for tonight’s Fresh Air interview with Pico Iyer about the Dalai Lama.  You will greatly appreciate it, believe me.

Walking in Daddy’s Shoes

MARCH 24, 2008 - I had about half a dozen subject lines for this one. I suppose the one that comes closest is the one I chose. This is not satire. This is not news and politics. This is life. This is me being selfish. This is my introspection verbalised after the day I had today.

Last night for supper I had chicken. I love chicken. It seemed a little suspicious to me, but I figured I was just being silly. Apparently I wasn’t. I was praying to the porcelain god 8 hours on the dot after I’d eaten.

I slept an extra hour this morning since I’d lost that hour, almost didn’t go to work at all, in fact, but remembered I had a medical appointment at 9.45, so I’d better get going. The walk from the office to the Olsen Center is a whopping whole 5 minutes, inside the buildings, no less.

The trip to see Laura was supposed to be routine. We were checking my blood pressure and preparing to do a meds adjustment if necessary. The BP was bad. She listened to my heart, and I saw in her eyes an “alarm” I think she didn’t want me to see. She told me my heart sounded a bit different and she wanted to schedule an ECHO for me. I figured, sure, a few days and I’ll have that ECHO. HELL no. It was immediate. Down two floors, past the coffee cart, to the Heart Center, and Laura said they were waiting for me, so don’t stop at the gift shop. (That was cute, but she meant it.)

I loved the girl who did the ECHO to pieces. Her name was Heidi. We chatted about stuff, and we ended up talking about reconstructive surgery, and she said she would be happy to recommend the doctor who had helped her son with his surgeries. He had some birth defects that needed repair, and she said this guy was marvellous. In the way she talked about this doctor, it made me think of another doctor I know whose talent and compassion is similar (too bad he’s in another state, and probably wouldn’t take on this project, anyway). I said, “Heidi, are you allowed to tell me what you see?” “Yep, not a problem. I can’t make any diagnoses, but I can sure tell you what I see.”

1. All four heart valves leak.

2. There is calcium buildup on both my mitral and aortic valves, and the aortic valve’s buildup is worse than the mitral.

3. Her exact words about the murmur: “Oooohhh that’s something you don’t see everyday!” I didn’t know what she meant, but the low whistle kind of made me think it wasn’t exactly one of those good things. She said it was hard to describe, but she could see that I’d had it all of my life, and that it had honestly changed especially recently. She said, “It used to go like this, didn’t it?” And she sort of made the original sound, and yes, indeedy, it did sound like that. Now it sounds squishy, and even more squishy and laboured than it did last month.

4. The left side of my heart is pumping at 40% instead of the normal 65-70%.

I have an appointment now with cardiologist Rebecca Villeneuve at 1.40 tomorrow. It seems we’re wasting no time with this. Certainly nobody is being casual about it.

In the meantime, no, I am not allowed to exercise or run. Crikey - like I needed an excuse NOT to run? My knees hurt bad enough as it is!

As a side note, there is another issue. In the past month, suddenly my right shoulder has started locking up, and if I push it, my arm and my neck on that side get stiff. It hasn’t just gotten progressively worse, it just went “creak!” and stopped, losing about 30% of my range of motion. Yes, we have an MRI for that and PT scheduled. Whatever happens with it, happens. I just would like to sleep on that side at night, like I used to.

So anyway, back to the heart thing, and this is where I become introspective. If medical science had been 25 years ago what it is now, I think Daddy would have been hearing from his doctors then what I am hearing now from Laura. The thing is, though, he didn’t hear these things from his doctors until about a week before he died. While this has not put the fear of God into me, it has startled me, and I don’t like it. I keep reminding myself I am not going to die next week, I’m really not. I can’t, because the house is a mess, Jack needs to be fed and walked, and I’m getting Lizard Ray.

But still, when a doctor tells you not to exercise, you start thinking. When someone tells you half your heart is pumping at 40%, you wonder. When you’re told all four of your heart valves are leaking, you kind of go, “WTF??????”

I would like to wake up in the morning and discover that the medical faery has fixed my shoulder and made my heart better - AND while we’re at it gifted me with new breasts and knock off the other 30 pounds that I have for backup.

And I want to be cute and ageless.

Might as well shoot for the moon, eh?

Really, I’m not what I eat.

There’s an advert on American television for a specific cholestrol-reducing medication where they say you don’t always get your cholesterol problem from what you eat. Yes, well, that’s how it is with me. I guess I could say I didn’t get it from doughnuts, I got it from Daddy. I didn’t get it from M&Ms, I got it from Mom.

Genetics is an interesting thing. Because of genetics, I have blue eyes, a red undertone to my hair, my mother’s features, and a rather dreaded combination of health issues that have carried down through both sides of the family.

As we go through this blogging process, I’ll talk about those, what they mean to me, how everything in the environment around us contibutes positively and negatively to our genetic predispositions, and how I am dealing with mine.

Thanks for reading, and maybe we can learn a few things together, eh?