July 27: So many things to address....

So, I come home Friday night and there is an envelope from NCCPA (certifying body for PAs). They are fond of sending out a ridiculous amount of paperwork, so it was going to be an acknowledgement of receiving my test, etc, etc. Except the letter started with "CONGRATULATIONS!" Yes, in a plain white envelope with no fancy script, bells or whistles came the news that I'm a PA for another five years!! Safe until 2013. As I expected, I wasn't in the top 15%, but I wasn't in the bottom, either. And it's over. And I passed. This is good.

Yesterday (Saturday) I did more work with my upper body than I had in years--literally. There were a lot of branches that had grown out of the vines/trees/weeds that had been cut before. I went to Sears this week and got the stuff to put on that kills the branch from growing things again. So there I was, with my 2 foot long pruning shears, hacking away. While I may not have done it in time to save the Japanese Maple, it looks a lot better overall. Well, sort of. By the time I was finished cutting and putting the goo on the ends there was the sudden realization that I was near collapse. So, the cut, and now dead, branches are all over the patio. But hey, if they're dead they'll be easier to cope with. And such a sense of accomplishment.

Several people at my UU Fellowship have commented in the last month how incredible my color is. My friend Carol said today "You aren't turning that yucky shade of green anymore!" (Green is the nausea after the fatigue and headache start.) Since I started going there 4 years ago, after I had been diagnosed but before we knew the surgery would be too soon, they have never seen me healthy, relatively speaking about a life-long problem. They see me on a Sunday morning, when I'm nice and rested and before I've done errands for the day. People at work still see the pale and tired in the afternoon, so it's not as dramatic for them.

Today I battled for about 20 minutes to change a watch strap. This, unfortunately, aggravated my right knuckle, which started bleeding into the capsule again. It now looks and feels the way it did two weeks ago after it happened. Fortunately, typing doesn't seem to bother it, so no need for me to be brief :)

Lastly: Before I got sick I worked most weekends, usually Saturday night to Sunday night 24 hour shifts. One of the blessings of having to stop working as a paramedic was that it opened up my Sunday mornings to start going to the Unitarian Universalist Fellowship that I had been passing for years on Street Rd. It is a spiritual place that is perfect for me: no creed, no dogma, a place that encourages you to develop your own beliefs while respecting others struggling to find their path. A "free and responsible search for truth and meaning." It is very difficult to break away from the mainstream religions that most of us were raised with and say "This isn't working for me..." In a recent survey, only 0.3% of the US population identified themselves as UUs (which works out to about 340,000 people). So it was surprising to see our symbol, the lit chalice, on the news. It was more horrible to hear the reason why: that a man had walked into the sanctuary of the Knoxville, TN church and opened fire during the service. Yes, there have been a couple of shootings at churches, but there are a vast number of churches compared to UU Fellowships. This isn't the way you want your under-recognized faith to make the news.

Message: There is no truly safe sanctuary and you can never say "I love you" to the people you care for too often.

To me, the words of Anne Morrow Lindbergh offer the best summation of what comes after this world: "We are not snuffed out at death but absorbed into a greater flame." That's why I was never afraid to die.

Thanks for checking in, and as we say at the end of our services: Go in Peace. Laurie

July 24: New thing, minor, but representative

I didn't mention in my last two postings another thing that happened about 10 days ago. I was studying, went into the kitchen to get a cup, banged my right hand on the cabinet door. Just misjudged while I was reaching up, slightly painful wack. I didn't think anything of it until I looked down a couple hours later and saw the middle finger knuckle was huge and bruised. Hey, that's what happens when you take coumadin.

But then it kept hurting, had a strange lump. But it moved perfectly fine, and I had the test coming up. So I waited, maybe it will just go away? It didn't, and it's my right hand....

So I saw the hand doctor today. That little whack caused my thin blood to leak into the capsule that surrounds the head of the tendon and sheath. He says it happens with heart patients on blood thinners. But since there isn't much blood flow to that area, the blood stays there for a long time before it is re-absorbed. It's going to be ok, but will take a while to resolve: 4-5 months.

Is this a big deal? Comparatively speaking, no. It aches some, but, comparatively speaking, it's not that bad. But this was a little whack, while at home. It's kind of sobering how little it now takes to cause problems.

For those that kept wondering why they didn't just replace the valve in the first time, this is why. This is why they kept trying to repair it: over and over and over and over (first surgery = 3 attempts at repair) and why a mechanical valve was the last resort.

Thanks to Deneen, J.T. and Barbara for their supportive comments. Laurie

July 21-B: Illness as a self definition

So, I'm lying on the sofa, in my usual state of evening pain, thinking about the response of 'anonymous' who says "Don't let your illness define you--move on!" And I started getting pissed. Because this is the kind of comment that people frequently either say, paraphrase or hint at, especially since I don't look sick. It's the kind of comment that people who have never dealt with being sick can say so blithely, because you really don't get it. So, rather than be pissed, I'm going to address the comment. Because, as I've stated a few times, while the blog was initially established as a way to disseminate information during the surgeries, I see it now as a charting of one person through a critical, chronic illness. In which case, I hope to give some insight into a way of life that--I hope--few will ever fully appreciate. Maybe it will help someone understand another person they encounter, be more compassionate. So here it is....

Within the first few hours after I saw my first echo and realized that life was never going to be the same again, I made a promise to myself: I was not going to be one of those people whose illness was the definition of who they are. Yes, whoever said that echoed my thoughts (although I think it's in a prior posting from a while ago). While this was a noble thought, it wasn't practical, although I didn't realize that at the time. Because being ill isn't like other things that you can adjust to or "get over": it's not being bullied at school or work, it's not being passed over for promotion, it's not getting over a relationship, it's not even like a loved one dying. Because it's not something that you can get away from, ever. No matter how much you don't want to think about it, it's there. Omnipresent. In your bed, your bathroom, your car, your job, your dinner.... You can't get away from it, because it's in your physical person. And it DOES define so much of your life, because being chronically ill is a constant that everything else has to fit around. It doesn't stop being an issue because you have something else going on in your life, you're taking a test, or you just want a break. You adjust to it, it doesn't adjust to you.

Every single day I am in pain: I wake up in pain, I go to bed in pain. The hours in between vary. My chest scar is looking pretty good, but it is covering a rather significant 8" plus hole in my sternum. You can, quite literally, put part of your finger into my chest in the long hole left by repeatedly being sawed open and having my whole chest cavity pulled apart over and over. It affects how I move: I can't push up from a chair, much less the floor, without pain shooting through my entire upper body. It hurts when I cough, sneeze or even laugh. I still grab my chest when I laugh. Holding it together, restricting the movement, keeps the pain from being quite as bad. Despite that, I try to laugh as often as possible. I can't sleep in any other position than on my back, rolling on my side hurts too much, because the sideways pressure on the ribs pushes into the unstable area. Before I stand from sitting or the couch, I roll one shoulder forward to decrease the pressure on my chest. To get out of bed in the morning I tuck forward, grab behind my knees and roll to the right. Reaching up above my head is painful, whether washing my hair or getting something from a shelf. So every movement I make with my upper body ends up being affected by the large crater in my chest. But it's surprising what you can get used to when there isn't an alternative.

The right back, around the shoulder blade, is also still painful on a pretty daily basis. It doesn't hurt as much of the time as the chest, but it's usually more severe. Any movement of my arm away from my body makes it hurt when it's acting up. Try functioning for an hour keeping your arm from your elbow up in contact with your body and see if you don't have a different perspective. And there's where the large chest tube came out of my right side from the same surgery--it hurts as well, especially if I've pushed it that day. Even leaning against the arm of a chair gives me a jolt of pain. But it's all relative: the pain I have now is a lot less than even a few months ago, although it's doubtful it will ever be gone. Some days are better than others.

I still haven't completely adjusted to the constant clicking of my metal heart valve. Also impossible to avoid noticing when it's inside you. The repeated surgeries stripped the pericardial sac mostly away, damaged my lungs and all the internal chest structures. It also seems to have affected how much I feel my valve, because whenever I'm lying on the couch or in bed, I feel it like the ticking of a watch on the back of my throat. And, for whatever reason, the noise gets louder sometimes, even during the day when I'm doing something else. This, they tell me, isn't normal, but is the result of not having a "normal" course of valvular heart disease. Several mechanical valve patients have told me it took about two years to adjust to the noise, so hopefully it will get better.

And then there is the joy of being a pre-menopausal woman on blood thinners. If you don't get the picture, let me spell it out: monthly periods===>bleeding with thin blood. Pause for a second to get the "EEwww" out of your system. And I can't take the pill, which I did really well on, because it increases the chance of clot formation, which is what you want to avoid at all costs when you have a mechanical prosthetic in your body that likes to collect clots and then release them into your circulation where they can get caught in nasty places, like your brain. So, when I cut myself and bleed all over, I remind myself that it's still better than having a stroke. I repeat that a lot when I see the bruises all over my body as well, which I do my best to cover with clothing.

All of this is over and above the daily fatigue that, while better, will haunt me for the rest of my life. That's due to having a valve opening the size of an eight-year-old trying to support and adult sized heart and body. But, honestly, the fatigue is the easiest thing to take, because I can function with that. But searing chest pain with more than half my movements, even breathing--that's difficult to ignore.

So, yes, I am defined by my illness. I am, by nature, a positive person, which has gotten me through this along with a deeply sarcastic sense of humor. It's what I usually write about here. But the first anniversary of the fourth time I got my chest cut open and my heart stopped was, to me, a big deal. It was a giant hurdle, physically as well as emotionally. For the most part I look at how much better I feel than after the first two surgeries, or this time last year. I'm learning how to adjust to a life that no one can ever plan on. Remembering how much better off I am than so many others who are ill. But everything: my plans, how I move, how I breathe, is restricted and defined by my illness. It isn't who I am as a person, but it does define how I live my life: month to month, day to day, minute to minute. And that is something I can't control. All I can control is how I choose to react to it. And some months/days/minutes are just better than others.

So, you insensitive twit, I can't just 'move on'. No one who has a chronic illness has that luxury. You deal with it, you adjust, but you can't ever leave it behind. It is what it is. And it sucks.

Laurie

July 21: Test, etc

Well, it's over--Thank God!! The test was, as billed, comprehensive. I didn't study too much, and there were things that I knew were in my notes, but just couldn't remember. And then there were other things that I wasn't going to know regardless of the amount of stuff studied. The results won't be sent out for 2-3 weeks, but I'm pretty sure I passed. But it's not official until the official notification comes in.

So since then it's been trying to recuperate. Went Saturday night with a friend to Les Miz, OK production, but not as good as prior ones. Their way of making sure the show was finished in three hours was to speed up the music, which just sounded wrong.

During the performance my phone went off twice with a Virginia area code. It was Carol, my cousin Mark's daughter, to tell me she would be in the area and wanted to come over and see me. My delight was somewhat dampened by how horrid the house looked--really. I vacuumed and cleaned the bathroom Saturday, and was going to start picking up over the next week or so, but this put it into high speed. Lots of things in bags in the basement, but the place looks terrific! It was good to see Carol, especially since the usual family vacation didn't happen this year.

So now it's time to try and catch up on all the things I've been putting off. Need to find some fast-growing trees and start getting more privacy between me and my neighbors. The lots are very narrow, and since I live entirely on the first floor you can be on the walkways of either flanking house and look right in on everything.

Long day at work, so it's off to the couch. And thanks to the person who castigated the first anonymous in the comment section: I appreciate the support!

Thanks for checking, Laurie

July 12: My one year anniversary!!!

Yes, today is the mark. I actually got very emotional this morning at different points, suddenly thinking "OK, exactly a year ago my chest was cracked open and my heart was stopped--I was 'dead' then and now I'm driving a car!" I remember feeling very 'something' on the year anniversary of the first one--in between the continuing gasping for breath and incredible fatigue. So, this is the first time that I've actually felt BETTER at a year-post. It's a real improvement over prior anniversaries.

Apparently Kevan is the only one who remembered the date; much easier to do for him since it fell on his birthday. I didn't hear anything from anyone else, not even those who were the most involved. I'm trying very hard not to be insulted, but shouldn't this kind of anniversary elicit some sort of response? If I wasn't broke and madly studying for my Board re-cert it might have even been worthy of a party. Or am I over-reacting?

Of course, keep in mind this is from a woman who is still in wonder and delight at the fact that I can sleep for 7-8 hours and not have to get up to pee. Yes, I know I keep bringing it up, but it's still such a novelty!

Thanks to those of you who are still checking in on me, Laurie

July 11: just stuff

Had a pretty good week, worked an extra five hours today which my checking account will appreciate. Local taxes due soon.... It's been hard to put money away with either not getting paid or the 20-24 hours a week I've been working.

Sleeping now with only two pillows!! And a towel roll under my legs. For the most part, I often sleep straight through without getting up to pee--it's still new enough to be incredibly exciting. Who knew I was in compensatory heart failure my whole life? Just thought I had a really small bladder. Getting settled is still painful, so not getting up is really a blessing.

Several comments in the past couple of weeks about how great my scar is looking. Clearly I've always saved scar tissue for the inside, where it's a problem. But it looks wonderful on the outside!

Got the estimate on repairing the Camry today (the Nationwide guy was kind of cute, actually....which really shows I'm feeling better!). Only $520, he says. Joanne's husband (who runs an autobody shop) is always insulted that I don't bring my car to him at these times (having been hit so often in the Audi), but there is a shop less than a mile away that the claims guy recommended. That seems awfully appealing from a time standpoint, not to mention mileage.

On a sad note, my friend Kevan called to tell me that one of the guys I used to run with at Central Bucks Ambulance died suddenly on Tuesday. He was only 39. I remember Fran Thomas as someone who had a zest for life and a great sense of humor. It's kind of surprising me how upset I am about this (couldn't study at all), considering we hadn't spoken for over 15 years. Our lives went different ways, you always think you'll keep in touch--a common story. I went out to the garage and found some photos from about 1989 of Fran at CB. (My photos are one of the few areas that are pretty well organized, but even I was impressed at this.) For Fran's initiation we tied him to a backboard and, since it was around his birthday, covered his head with Cool Whip, put candles in and lit them. (Guess who's idea that last part was?! Hey, ya gotta celebrate!) It seems like looking back on another life I led, like a dream. Almost 20 years ago now. Unbelievable.

Well, it's time to get ready for bed. I'm also thinking about where I was this night a year ago....

Thanks for checking in, Laurie

July 6:

Wow. No comments. I guess you're all holding back on the whining comments! It's OK!!

Mom is doing well with the new, lighter and more mobile cast on. She can now pull up pants, which is a big plus in ease of dressing. Her next appt is next Weds, which I have bowed out of, because next Friday, July 18th, is my Board Re-Cert Exam....

Yes, yes, everyone says "you'll be fine!", but that's not how it feels. While virtually everyone says how "normal" my brain is (relatively speaking!), I know how many gaps there are. The stuff I know, cardiology and internal medicine, is fine. Took a little when I first came back, but I feel pretty up to snuff. What's terrifying is the stuff that I don't use, because frequently I just stare at it and have no memory of ever knowing it. So lots of time now being spent with review books, making up flashcards that have an over-abundance if information on them (because the important points need to have an explanation, because I don't remember!). Infectious diarrhea was a long topic to get through (and that I didn't really WANT to remember!), now moving on to pediatrics, which means childhood cancers, genetic abnormalities and immunization schedules. AHHHHH!!!!!

Hesitant to say this, but I'm actually feeling better. I can now work a full day at the office and leave feeling tired, but without the massive headache, nausea and lightheadedness. Then I get home, rest for a short while and can function at home until bedtime. This is very exciting, because I can picture being able to adjust to this. The current schedule of three days a week has become much more "do-able" now, again; I can work with this. Since I'm not as wiped out from work, I can do errands on my days off and still think about socializing a little. The pain is better, although present every day, and any deviation from the schedule gets me tired and back to the headache/nausea/lightheaded. But I seem to recover more quickly, although I definitely do better with one entire day at home over the three days off.

Saturday, July 12th, will be the one year anniversary of the third (and final) surgery. So, really, that's not a huge amount of time considering how close the second heart, thoracotomy and third heart all were to each other. Maybe I can even get a little more back? I don't want to get greedy, because earlier the goal was to be able to work the three days and be able to function. And for having achieved this goal I am very, very happy and grateful.

Thanks for checking in, Laurie

July 3: Mom update & let no good deed....

So sorry to keep you all on tenderhooks....

Mom's surgery was last Monday. He repaired the new break with pins and plate, wasn't able to correct the fracture damage from 15 years ago to that wrist. That's OK, because she had full use of it before this, it just looked a little crooked. While she had some "dramatics", all went fine.

Her rib was a non-displaced fracture and is causing less and less pain. She made the mistake of whining to me that it hurt when she took a deep breath or moved a certain way. I was rather less than sympathetic, considering that this followed several days of complaining despite my pointing out how lucky she was to not have broken a hip. At the initial doctor's visit, her response to "And how are you doing?" was "Fine, I guess, under the circumstances!". I pointed out the lady with TWO broken wrists in the waiting room, and the several hip patients that limped by us on the way back to the exam room. So the rib comment was met by that famous look of mine :) She got the message, paused and said "And you're thinking 'welcome to my world?'" My response was "Yes, since October 15 of 2004, every day!"

No problem with the kidneys, and no good explanation for why the sudden increase in urination, which has subsided. She has had a problem for years and has finally agreed to see a urologist. New medication (Vesicare) seems to be working better than the previously used (Detrol).

The cast after surgery went from just below her ACF (bend at the elbow) all the way down to include most of her second joint (middle joint) of the fingers. It remained pretty swollen and not much use. Yesterday's visit, 9 days post surgery, took that cast off. They removed the stitches and the outside looks great. She got a little queezy and needed to lie down after they took out the stitches. The new cast is much shorter and gives her use of her fingers, which are still swollen and desperately need some activity.

I pointed out to her yesterday that I was concerned, sympathetic and came up with several things to help her out. I just don't tolerate constant whining. Apparently she was saving it all for me and keeping her chin up with everyone else, to which I said that stating she hurt or whatever was fine, but not in the "woe is me" voice. Let me point out that this blog is for me to whine, and I always warn you and put in something positive afterwards!

Since she was still a little nauseated, I was anxious to get her back to the apartment. So I didn't notice anything amiss until a man stopped me and told me that my car had been hit. My beautiful, 2-month old, gorgeous red car. By the car who had pulled into the spot next to me, the corner of their bumper scraping the driver's side low down and across the wheel. Probably a couple thousand dollars worth to fix. So then I had to track down the driver, who was an older lady with her husband with complications of his hip surgery. She was most apologetic and felt horrible, I assured her that it was just an accident and that was what insurance was for. Her insurance company already contacted me, so now have to cope with all that stuff. Sigh. Just another hassle, nothing earth shattering. Just pooh--my new car. Sigh.

More later about me, but just wanted to give an update before the weekend.

Please spend a few moments of July 4th praying for our soldiers who are currently in service, and sending a thankful message out to the spirits of those who sacrificed themselves for our country. It seems that this has become just another 3-day weekend and sale opportunity. Don't lose track of what the real meaning is.

Take care, Laurie