Dec 31: End of 2007 musings

It's 6:40 pm on New Year's Eve. I just got up from a >1 hr nap, have to throw together a salad for 15 people, get dressed and drive to a friend's house. As usual, I left this to the last minute. But I wanted to do one last posting for 2007, because it has been such a monumental year in so many ways: good, bad, whatever and unknown.

It has been a tumultuous year. I made the decision to sell my beautiful big townhouse and downsize to a smaller house with a rental unit. While there are many factors in that statement that I am unhappy about, the huge positive is that it will enable me to survive financially. If I can return to work 30 hours or more a week, then it will open up major possibilites for me: saving enough to allow me financial security in the future, hopefully return to traveling again. 2007 contained the emotional upheavel of hearing I needed a third surgery, which hit me harder than the other two combined. There is just something so wrong about the phrase "third open heart surgery". I still get choked up when I say it. But, whatever happens, that was the last heart surgery. What's done is done. Either I continue to improve and can take more of my life back or this is what I have to work with and adjustments will have to be made to that fact.

As long term readers will know, I looked at each physical problem by relating it to the absolute worst issue, which was reached after the first surgery. Bluntly, when my chest was so torn up that I couldn't even manuever enough to wipe my own butt. That, for me, was the lowest of the low, rock bottom. So, putting things in perspective, nothing else physically was quite as bad as that. From a combination of horrid life events, this spring will be the bottom of the heap: coping with the news of a third surgery, being in heart failure, constantly fatigued, still in pain, having to admit defeat by giving up the Ambler house, cope with all the accumulated stuff in the house (a lot of it relative's and not mine, in my defense), supervise the renovations at the new house with Willard's heart attack in the middle of things, juggle the financial issues that renovations cost (and, of course, how much over budget it was) while continuing to work three days a week and pass for a responsible, caring practitioner. Yup. That was the pits. That is now the touchstone for just how bad it can be.

A huge blessing that I haven't mentioned for a while are the wonderful people at Brigham, especially Drs Kenneth Baughman and Lawrence Cohn. Unlike when I encountered problems after the first surgery they believed me and kept looking and discussing until they found the problem. There is no one else in the world but Dr. Cohn that I would have trusted to again cut my chest open, stop my heart and put it together while fixing the pieces.

I want to thank those who kept me sane and allowed me to get through all that: Brenda, "Aunt" Beth, Mom, Kevin, J.T., my realtors Steve & Jane Dalton, Ellen, Barbara and Bill from BuxMont, Alice (who took such great care of the cats), Bill the porch contractor. Special award to Willard, who did such a great job with the renovations, going above and beyond a contractor or friend expectations despite his health issues. (Is there anyone else who would have been discharged from the hospital after a heart attack and gone directly to the house to do a "few" things?!?!? I don't think so! ) And my bosses at Marple Medical who have continued to provide health insurance and the knowledge that I always had a job; dealing with getting on disability and Medicare would have been beyond my coping skills.

But on looking back at everything, there is one person who stands out the most: Joanne. She spent uncountable hours packing the house, adjusted her schedule, all but deserted her husband and two kids, came with me to Boston for the cardiac cath and TEE, was here several times a week at the new house getting me settled and unpacked, and came to (tearfully!) greet me as soon as I came home--on her birthday no less--with flowers. She continued to come every Monday after work to help out with the myriad of obstacles that being post-surgical presents. Right up until her father was in the hospital for five weeks getting treated for his cancer. Honestly and truly, I would not have survived without her friendship and support.

After the main goal for 2008 (not getting my chest cut open and my heart stopped again), there are several other things I'm shooting for. Losing weight in the hopes of more energy, finding out how much I can regain physically, figuring out finances, and maybe--just maybe--traveling somewhere.

Thanks to all of you for checking in on me. Wishes to all for a terrific and healthy 2008 for all.

Laurie ( mechanically enhanced!)

Dec 19: realizations & questions (rhetorical)

Usually I post Sunday nights, but haven't anything recently about important stuff--like how I'm really feeling--so figured it was about time. Why should it be running around in my head when it could be down here?

My emotions run the gamut between happy and depressed, upbeat and down, hopeful and not. They usually even out to practical and hopeful, but the troughs inbetween can be hard. I just read back over the last couple of months. The biggest positive--huge--has been the decrease in pain. But any activity more than usual still gives me pain, always the sternal and/or the right back thoracotomy area. By nighttime it's usually both. And Tylenol doesn't make any difference, Motrin helps but I'm not supposed to combine it with the coumadin (blood thinner) because it affects bleeding time as well. Sometimes I "treat" myself to a darvocet before bedtime, but I don't want to get dependent on it and never take it during the day. There are so many basic things that cause pain or discomfort: reaching up high for something, getting out of a deep chair, moving around in bed is still difficult. And you can still pretty much set your watch by my energy crashing at about 3:00, after which I can't do much of anything.

There is also the emotional part of coping with being chronically ill. A friend of mine passed away last year after years of debilitating severe illness. She had been an athlete until she developed ankylosing spondylosis, which fused her spine and kept her from moving without difficulty, the steroids caused weight gain and diabetes which then affected her ability to heal. But her spirit was just wonderful. Not cheerful all the time, having bad days and weeks. When I asked her how she adjusted to being incredibly active to wheelchair bound she just shrugged her shoulders (sort of) and said "That was my life before and this is my life now." It seems so simple to say, but is much harder to put into action all the time. I'm trying to make the adjustment to what my life will be now.

After the pain lessened and I started sleeping better there was a big surprise. I slept all night. For eight hours straight, not getting up to go to the bathroom all night. For as long as I can remember, certainly since I was 19 and started running overnights at the Squad as an EMT, it was a joke that I couldn't go out on a call in the middle of the night without peeing first. One of the reasons I became a paramedic was because then the crew HAD to wait for me to finish. It didn't matter what the call was: respiratory distress, auto extrication, cardiac arrest, I had to pee first. So when I slept for eight hours straight several nights in a row it was literally the first time in my adult life. Because for the first time in over 25 years I wasn't in heart failure. When I was lying down, resting or sleeping, my heart was then able to clear out fluid that it couldn't when I was active, standing or even sitting. My heart and lungs were dealing with this for decades; it's called compensatory heart failure. When I couldn't breath and was turning blue it was when my heart could no longer compensate. But how can I have been walking around in this body for that long and not really know what was going on inside? There is a period of time after someone gets sick that you are angry at your body for it betraying you. It's part of the grieving process to losing your old life. But for years my heart had been struggling, allowing me to work 80+ hours a week, get through school (twice), travel, the physically punishing work of being a paramedic (yes, still my first love). The tiny little opening and diseased leaflets that made up my mitral valve flailing away, my heart and lungs battling to cope. I'm filled with a sense of awe and gratefulness. Is it grandiose to think that God had to be involved in some way to allow me to do all those things for so long?

So what does it all mean? What am I supposed to learn from all this? Am I supposed to change in some way I haven't figured out? Did I miss the 'lightening bolt' realization or message from the higher power about the purpose of all this happening? How do I adjust to this new life? How am I sure that I'm doing it right? Am I supposed to be handling this in another way?

I don't expect any answers from anyone else to these questions. Although if anyone has anything enlightening to say, by all means, please do. But at this point I figure that anyone who is still checking in here also wants to know what you go through while coping with a serious illness, so I'm just letting you know the inner thoughts. Be gentle with me. It's hard to put it out there, because I actually become more introverted when I'm not feeling well. But maybe someone else will be helped by either your understanding, or knowing that someone else thinks the same things. Of course, that's assuming that anyone thinks the same way I do, which could be pretty scary in and of itself.

So, now I'm going to take a shower and go to bed. I'm tired. Thanks for checking, Laurie

Dec 16: Just regular stuff

Hi there, all! So sorry about missing last week. I often compose literary masterpieces in my head, especially while driving, but then don't remember to sign on and actually put them in here.

So, updates. The top one on my mind is that yes, I seem to be gluten-sensitive. Initially when I started back to eating normally there didn't seem to any change, but as the last week went on my congestion got worse and worse. My ear and throat hurt, and it got really bad yesterday. So, I stopped again yesterday and felt better this morning. My thought is that I can have some, but I really went to town on eating wheat on Friday, so it must have really tipped me over the edge. Cereal, pizza and pasta definitely was too much. Took Mom out for her birthday at a pizza place in Doylestown that actually does gluten-free pizza, which might drastically increase my visits there! So, I'm going back to being strict for a few days and then will see how much I can add in, slowly, and see if I can tolerate some every day. The other possibility is yeast, which would make it slightly easier. At least then I could eat more things, including Chinese food (soy sauce has gluten in it!). After a discussion with Joanne's husband John about their use of dogs and cats, however, that doesn't sound too appealing.

Work is going along the same. It seems to be OK with them for me to stay doing the three days a week for the next couple of months, which is good. I do seem to be slowly improving, when I get home I rest for a couple hours and then can do a few things before going to bed. Still getting over the sinus infection, I may extend the antibiotics for another week to be sure it's gone.

House still seems to be a constant wreck. Just when I get some stuff coped with there seems to be another influx. Of course, now it's Christmas stuff. I've done very little decorating this year. The prospect of not only finding it, but bringing it from the garage down, finding a place for it and then hauling it back up to the garage and packing it away again just seems too much to cope with right now. And how can one person actually generate all this paperwork? There is just a steady stream of papers and stuff that has to be dealt with.

Leaves are all neatly bagged, but in the garage. Another round of collection has lead to there being more than 30 bags. I keep calling the Boro to find out when to put them out, and was supposed to get them out for tomorrow, but the high winds are making it doubtful that it would be a good idea, so they are still in the garage.

Well, off to bed. Thanks for checking in! Laurie

Dec 2: Nothing special

Why is it that I always seem to leave this to the last minute? With the weather predicted to get very nasty, "especially north and west of the city", i.e. includes Phoenixville, I decided it was the perfect time to stay inside all day. So it's not like I haven't had the time....

Stayed up too late the past two nights, sleeping too late in the am. The cats were very patient with me--I didn't get up until after 9:30!! I seem to have a sinus infection--again. And without anything good in the house. And there was no way my blood-thinned butt was going out in the layer of ice on the sidewalks and roads. So I was definitely under the weather today. And there is just so much paperwork that needs to be coped with on a regular basis. And since I don't cope with it there is a tendency for it to build up, which it has. And making inroads on my e-mail boxes. Finished a book.

Yesterday was a good day, however. The guy who had come over and helped me with the garage before called yesterday morning (at 7:30 am!!) to see if I could use him. So my leaves finally got done. It is the first time I've had to bag leaves, and I had no idea how many bags it would take. Apparently more than 20, because he still had more leaves by the end of the bags! And that's just three large trees! We moved things around in the garage, and I am happy to say that last night my little car finally came off the street and indoors. It was also the first time a car had ever been parked in there, I think. On carpet, no less. (That will come up at a later time, at least I have a dehumidifier running all the time.) Doing some cleaning and picking up really tired me out.

I did accomplish one thing today, actually for the second time. While I've had my treadmill for about seven years, I am ashamed to say it wasn't until about two years ago that I figured out that batteries were needed for the display. It's plugged in, why does it need batteries? Anyway, on Tuesday and again today I reached a milestone: I walked for 1.5 miles and 45 minutes!!!! Of course, I'm exhausted afterwards, but trying to build muscle is worth the sacrifice.

Holding onto the gluten free for a few more days. Need to start clearing up this sinus infection or I won't know for sure if I'm OK eating gluten (which I think I am) or I just feel better because the infection is being treated. So off for modern pharmaceuticals tomorrow!!

It's now almost 10:15 and I still need to pack lunch and get ready for tomorrow. Never got around to changing the bed. Oh, well. Chester hates to be moved and he spent quite a bit of the day there, as usual. Now that it's getting colder the furnace has been on more. Chester and Zerla have discovered the wonderfulness that is the wooden covers over the radiators! They both are spending a lot of time happily stretched out on them. I haven't seen KC on one yet, and while Tabitha was sitting on one looking out a window I don't think the heat was on then.

Anyway, off for another exciting week.

Take care and thanks for checking, Laurie