For anyone who’s taken the time to read all of this blog, you will know that much of it has been writings I’ve done about losing several members of my family to cancer in a very short period of time. Between May of 2010 and September of 2011, I lost my dad, my mom, and my sister. It was a heck of a time, overlaid with some marriage challenges and general life bumps and bruises. It took some doing, but I made it through and figured I’d had my time in the ringer. It’s why my icon on this blog is a Weeble ®. I may wobble, but I don’t fall down.
The past few months, I’ve spent focusing on my needs – like writing, remodeling, yard work, travel – as well as keeping busy working full time at a fairly demanding job and raising 3 kids. But I’ve felt like a slug for several months and instead of tackling things after dinner, it was all I could do to stay awake. That isn’t me. Three years ago, I did my second triathlon. OK, it was a sprint triathlon, but it was still a pretty major effort. Today, I couldn’t imagine doing one. I am that run down.
First, I thought it was depression. That seemed somewhat plausible. Then I figured it was overlaid by age-related issues and hormones in flux. But enough weird symptoms kept popping up that I decided to list them all out and take them to my doctor and ask him what the hey hey sha na na was going on. I needed to figure out if this was just life as it was going to be or something strange happening to me.
Growing up as one of 5 kids, my mom had her hands full with boo boos and owies and playing nurse to all the scrapes and cuts. This was back before everything was child-proofed. We played with knives and climbed metal playground structures over cement. We had a few bad spills along the way. My mom didn’t really want to be bothered unless you were REALLY hurt. I would take my injuries to her and she would tell me it was barely visible. Imagine that – to me, I was gravely injured and to her, it was a minor mark. She called me a hypochondriac a couple of times (my mother never believed in talking down to her kids – we all knew really big words early) and I learned not to take every little item to her. This still lives in my head when it comes time to talk to a doctor. My list, however, told me that I wasn’t just making stuff up. There were a lot of odd things at play.
He took my concerns seriously and ran blood tests to see what might be the cause. I told him about the autoimmune issues in my siblings and he did some special tests to isolate those results. To make the long story somewhat shorter, after multiple referrals, additional tests, and a biopsy, I now know that I have a reason to be fatigued. I have both Lupus and a new-to-me autoimmune disease of the liver. While neither of these is an immediate death sentence, they are both chronic conditions that will stay with me for the rest of my life – and will affect the quality of my life. What this means to me is still not completely clear. What I do know is that I need to change many of my lifestyle patterns – I need to minimize stress (no real idea how that’s going to happen…), I need to stop enjoying wine and the occasional cocktail, I need to change my diet to eliminate some bad foods for me, and I need to take medication for the rest of my life. I’ve gone from being a healthy person to being someone with a “condition”. Shit.
I am still processing a lot of this. I don’t really know how I feel from one moment to the next. I am sad, fearful, angry, anxious, unsure, optimistic, and back around again as the days go by. I force myself to look on the bright side, then I want to smack that positive person and say “Stop celebrating something that is ultimately a suck-fest. This is not a prize!” So I dwell in the depths for a while and then look for something to take my mind off it. A drink is no longer an option.
I have had a sense of impermanence since my parents died, and my sister left us when she was only 57. I know I don’t have forever to be a part of things. I am counting on at least another 30 years, however. And I want them to be good years. Not years of enduring a modified lifestyle that lengthens my time but makes it less enjoyable. I want to celebrate my children’s milestones – cheer them at graduation, dance at their weddings, hold my grandchildren, toast their successes – and be there for those golden years I’ve heard so much about.
I am struggling with it all, wondering what I might have done to deserve this. And I realize in asking that question, I am being about as ridiculous as can be. It is just a function of biology, not divine retribution for anything I might have done or not done. I am simply the lucky recipient of this particular set of genes with this particular autoimmune combination.
I have a lot to learn about what lies ahead. I am going to continue to work at optimism, balanced with realism so as to not piss myself off. I will list all the things I want to do and get busy. I will take inventory of my life and make sure I am living it with intention and with passion. I will listen to what I need to do to take care of myself and not burn out. I will accept that this is what is and no amount of bitching about it will change things. I will suck it up and get on with living. In short, after another round of knock down punches, I’m going to have to bounce back up again and be the Weeble ® I know I can be.
But seriously – again? Really?