April 28: Recognition of my progress

Had the last of the current series of yoga sessions this past Thursday, which would be a disappointment except that Gael is starting another series right away.  I do much better with weekly discipline.  Weather colder, less walking.  Eating incredibly healthy, not dropping any weight, so very frustrating.  Through the worst of the increased work schedule combined with pre-existing committments, so can relax a little more now.  That being said, it means more time for a long, involved and (hopefully) profound posting, which hasn't been my norm of late.

At the end of our last session, during the time we have a snack and chat, Gael decided to 'out' me.  As I've noted before, I don't like to reveal my heart stuff until people get to know me, so that it doesn't become my entire identity to others.  This was brought home to me after being at BuxMont a couple of years.  Since I had started going there shortly before the first surgery, no one knew me except as an already sick person.  Being continually compromised meant not being able to participate in things, so that with the exception of my small group most people only knew about me from standing up during Joys & Sorrows to announce another setback/disappointment/surgery/occasional victory....  All this lead to a very nice man relating something I'd just said to his wife with the preface "Laurie, you know?  The one who's always getting up and talking about her heart problems."  Inwardly I cringed, but as much as I wanted to defend my wide range of interests, some notable accomplishments and successes, there really wasn't anything I could say since his interpretation was correct with the information he had.  It raised in me a huge mental note to establish myself as a whole person, not wanting this as my entire identity to people.

The great reveal went fine, they were both seemingly enthralled (well, honestly, it IS a fascinating tale!), asked lots of questions, Gael acknowledged my various advancements over the time she's known me.  But the best thing about relating the years of pain and horror was my recent recognition that my illness really does not define me as much as it did.  It is, of course, integral to my current situation and abilities, and always will be by necessity.  But I've recognized of late that the last eight years becomes one volume in my life, not the whole story.

Now doesn't that sound spiritually advanced!

In looking back over just the last couple years of posts, editing some, correcting grammar in others that were too rapidly composed (sorry, Michael!), the change in my outlook becomes more obvious to me.  While there were certainly moments of epiphany along the way, some times that I made more rapid improvements than others, the overall result is a drastic improvement, even from last year.  It doesn't mean there aren't backslides or bad days, or that there won't still be some, but when looked at in it's entirety what was subtle becomes more obvious.  That's even taking into account my tendency to post and write more when my mood is down rather than when I'm up. The downs aren't as bad as they were, and the ups are more frequent and last longer.  What also needs to be recognized is that my physical health is much improved and it's vastly easier to be positive and hopeful when not gasping for breath.

About a month ago I did another service at BuxMont telling my story.  Having to put ideas floating around in my head into a cohesive and flowing script is very helpful to me, forcing me to organize my thoughts and conclusions that may not have been completely formed.  On hearing (or reading) my conclusions some people seem to believe that I constantly wander around being highly spiritually advanced and aware, but that still isn't the case.  There are flashes of these recognitions, but they  follow hours and hours of thinking, meditating and brutally honest self-assessments.  Those hours aren't separate truths, but serve as stepping stones, several at a time leading to a more advanced place or conclusion.  There are sometimes long plateaus; just as in nature winter is needed for plants to rest and recuperate before they begin to grow again in the spring; constant growth is not possible.  But the inward turning I've so frequently mentioned has been necessary; to grieve and come to terms with my losses.  I don't think you can really move on until you've done this, which is why so many people remain stagnate in their depression.

My heart condition will always be a major factor in my life--that's reality.  There will always be limitations, adjustments to how and what I can do, different expectations than 'normal' people have for their lives.   In the past year, however, I've made a conscious adjustment in my phrasing to saying 'heart condition' as opposed to 'bad heart' or 'diseased heart', and this is more than just a change in the vernacular because it is also a difference in how I relate to my heart and expect other people to view it as well.  My heart is not bad--it's been an incredible champion my whole life, considering it's impressive anomalies.  The change in phrasing doesn't sound like much until you look at the larger implication: it takes my illness out of the negative and puts it into a more neutral statement, one of fact without judgement. 

This doesn't mean that what I've gone through hasn't been horrific, painful and discouraging.  There is no question that it's been a process to cope with the massive number of changes that have occurred in my body, life and spirit as a result.  Virtually all of those changes wouldn't have been my choice without being forced into them.  That is said with the awareness that I was fortunate to even have choices, to be able to maintain much more than many people whose lives have been damaged by severe medical crisis.   And I wouldn't say that I'm glad that my illness happened.   But what you make of the challenges in your life is what defines you as a person.  So, whaddaya going to do?  Be miserable and wallow the rest of your life?  Or push through, cope, grieve and move on? 

Now that the worst is over it is time for a shift of attitude and viewpoint.  What happened to me can't be changed, it wasn't my fault and I didn't deserve any of it.  From the beginning I recognized that the one thing I had control over was my reaction to the situation, and that is still the case.  It is certainly much easier now to not have my illness dictate every single thing I do, to have options.  So I've consciously chosen to change how I relate to myself, which will carry over into how I relate to others as well as their reactions to me.  Because now I can, once again, be much more complete and complex as a person rather than just 'the one with the bad heart problem'.

Ahh, growth.  Isn't it awesome?!

Thanks for following my journey,    Laurie

April 12: The flip side of the whine

Just to keep you from thinking life is all about pain and horridness.....a few positives.

My wonderful yogi-guru, Gael, is doing a five week 'blitz' course right now, tonight will be the third night. I'm enjoying being pushed a little more. There are only two other people participating, but they are both intelligent and wonderful, so an entirely enjoyable experience. Obviously, I'm protective over my chest and won't do certain positions. But Gael has been telling me that if you continue to work other areas that you can eventually do the positions you couldn't before, and she was proven right last week. I'd been working at home on a move that puts weight on my shoulders and chest, gradually increasing the time that I can hold the position. So, last week, when she had us do a sequence that simply wasn't possible for me last year, I was happily stunned to move easily through it. This, of course, gives me more confidence and reinforcement to continue other positions.

Monday night I needed to pick stuff up from the pharmacy, a little less than a half mile walk. First I just thought to walk the long way there, then thought 'a little more', then got to that point and said 'well, just a little more', and while it was evident at the furthest point that I'd extended too much, the good news is that over two miles of walking and my foot didn't hurt! I collapsed exhausted on the couch, but again, highly encouraged at my progress.

Also very grateful for my insurance plan covering the $125 for the month's supply of Coumadin.

I was supposed to work today and tomorrow, but decided to take a couple vacation days. So, shortly after signing off here, I'm off Bead Fest to wander happily through table after table of beads and supplies, and decided to treat myself to a few jewelry making classes. It ain't classical Greece or the glories of Turkey, but it is something I enjoy and have really been looking forward to. The classes, of course, are sitting down--another bonus.

So, whilst the whining does still happen it doesn't last for very long. Is this what I thought I'd be excited about at this point in my life? No. Did life work out to be my dream? No. But coming from where I was five years ago, it is a huge improvement. Of course at this point five years ago I was moving and facing the third surgery with grim prospect for any meaningful life afterwards, so the bar is, admittedly, rather low. (!)  But my recovery has been beyond their wildest expectations, even with chronic issues.  Guess they didn't take my dogmatic approach to obstacles into account....

On that note: this July 12 will be the five year anniversary of the last surgery. It even falls on a Thursday, the same day as 2007. I'm still trying to figure out how to celebrate the date.

Thanks to anyone who is still checking in,   Laurie

April 3: On a brighter note....

Well, you have been warned in the past that when not feeling well I tend to be rather depressed. Now you know why there is so much time between posts.

But there is an up to the current schedule. In the next couple weeks I will have paid down my HELOC balance to the level the budget said wouldn't be possible until the end of the year. So three months of extra hours will have accomplished what twelve months was supposed to. If things continue (although this is counting chickens....) then I may have paid off that money by the end of June, instead of the end of 2013. So yeah, that's worth some pain.

The other bonus to pain is that I'm much better at writing about my experiences. I just did another service at Fellowship, titled 'After the Storm...' about the difficulty in recuperating from a personal trauma. It wasn't an easy thing to write, but the reaction was pretty overwhelming. Many people thanked me either for describing what they couldn't or helping them understand someone else. It reminded me that being able to express myself can help others.

And on another bright note: I've gone back to walking, although not as regularly if the fatigue/pain is bad. But tonight I walked a little over a mile in about 30 minutes, first time that long since August when I broke my foot. Yeah!

Laurie

April 2-3: Just be sympathetic whilst I whine

It's 12:30 in the morning (hence the date) and I should be in bed. But I came home today with my chest screaming in pain, sending me to the couch for a very long time. After several hours, and some codeine, the pain has settled down substantially. So, now that I'm feeling better and have rested it's more difficult to get to bed.

The pain: it's not super bad, but that's comparing it to post-surgical pain. When I try to disconnect myself from it and be as objective as possible I'd have to say it's about a 5 on the 1-10 scale. But the problem is that I have to keep functioning. And the pain, once it comes, is unremitting. It hurts to sit, to reach for anything, to drive, to twist a jar lid off, to open or close a window. It hurts to breath, it hurts to not breath. The only thing that relieves it is sitting/reclining on the couch being absolutely still.

It's difficult to assess if the separation of the sternum (breastbone) is worse. No one wants to feel it, much less really examine it. There have never been objective measurements taken since the final surgery. But it feels like it moves at times, is still unstable. I had a huge sneeze today and swear I felt and heard it move while clutching my chest. And there is also the delightful sensation of my right lung slamming into the mesh that holds it in, causing a slight pouching out from between the ribs.

The problem, of course, is that there isn't anything that can be done. Sternal non-union is a well-known issue with patients who have had their sternums sawed in half even once. Mine was twice, plus all the rib spreading on the right from the first surgery where the ribs never went back into place, plus the right shoulder blade area where they then opened up the right back ribs and moved everything out of the way to put the mesh in the front. So that's four major chest wall insults. Add in thin, osteopenic bones and it just gets worse.

The irony is that my scar is not all that obvious. Looking at me, even with several inches of it visible, gives no clue as to the problems underneath. So it's hard for people to understand, unless they feel it, which hurts. Just to make the point, however, I do insist at times. It's especially irritating because people truly believe that I'm perfectly fine, should be grateful and happy all the time for how lucky I am. Funny, but with pain, now every day since increasing my hours, is the recognition that I'm paying the cost, most people just don't understand how much has changed.

My next cardiology appointment is May 1. Even though nothing can be done, I'd still like it on the record that working more hours causes more pain. That, of course, gets me worrying about the future. Don't tell me not to borrow trouble--it doesn't work.

OK, tired enough to try for the bed thing...... Thanks for checking in, Laurie