Being Alive vs. Living Life

Marguerite asked me recently why I hadn’t posted to my blog in a while. I started to answer and then paused. She quietly asked if it was because I didn’t have any good news to share. Bingo.

Since starting this blog, I’ve tried to illustrate my true balance of negative experiences with humorous stories and strong doses of optimism. As I’ve been struggling with fatigue this past year, it’s become increasingly difficult for me to summon much optimism at all. Without the offsetting moments of joy, I have hesitated to share my difficult times. I imagine that people might look at my situation and wonder how I could possibly be dissatisfied after rebounding from months on death’s door.

To those imaginary people I say yes, I have seen far worse times than this. I am alive, after all – a fact that I haven’t taken for granted one single day since October 19, 2009. But having survived just isn’t enough anymore. It’s not enough for most of us to simply be alive – not if we’re not actually living – so why would it be enough for me? In seeking more though, I feel guilty. I don’t want to seem ungrateful to my supportive family and friends, to the doctors and nurses that have brought me this far – or most of all to my donor and her gracious family. I’m trying to come to terms with honoring and appreciating my survival AND freeing myself to be unsatisfied with the way I feel. I want to feel good. I want to enjoy this life that I have!

I was catching up with a colleague a few weeks ago and explaining the “I appreciate being alive but it’s not enough anymore” phenomenon, and she responded with words that have been echoing in my mind every since. She said, “you want to feel good and live your life, and there shouldn’t be any guilt associated with that.”

So with that elongated introduction, here’s the skinny on what’s been going on.

I have been struggling with extreme fatigue for about twelve months now. We first thought my exhaustion was being caused by iron deficiency anemia, so I had iron infusions back in March of 2011. Despite an allergic reaction that made it a very uncomfortable experience, I had two weeks of extraordinary energy. I think it was probably a normal level, but I felt like Superwoman on crack compared to how I’d been feeling. And then it was gone. This left my transplant team scratching their heads, so I was referred to a hematologist.

The hematologist’s goal was to fix my anemia. After improving my blood iron levels with different dosages and types of oral supplements, I felt no physical improvement. I subsequently began monthly procrit shots (to help my body make red blood cells), which have addressed my anemia but have again provided no relief from my fatigue. The hematologist was out of ideas and advised that I consult my endocrinologist.

My endocrinologist was fine for general diabetes management, but I didn’t believe she was equipped to help me beyond that, so I would need to find a new one. But endocrinology was just the next specialty on the list – my fatigue might be related to my endocrine system, but it might be something a rheumatologist would need to address, or I might have a disease that only an infectious disease doctor can treat, or maybe it’s something that requires an allergist... With so much uncertainty and complexity, I wanted to find one place where a team of doctors could evaluate me from head to foot and coordinate with one another to identify, once and for all, the cause of my relentless fatigue.

For a couple of months, all of my eggs were in the Mayo Clinic basket. They are very adept at this sort of thing, and I just knew they could solve my problem. Unfortunately, they weren’t quite as excited about me as I was about them. I received a form letter indicating as much a few weeks ago.

I now have about a dozen different appointments within a couple of weeks with a handful of different practitioners – each independent of the next. I saw a new endocrinologist last week, who had some ideas (I just need to get some labs done). I’m going to make an appointment with an allergist shortly. I see my new heart transplant cardiologist (there’s been some turnover to say the least) this coming week to see if he might provide a referral to Mayo, which might be more fruitful than my individual request. I’ve had a sleep study, a cardiopulmonary stress test and a slew of blood tests, all of which have so far generated more questions than answers. Oh, and I have a full-time job.

The good news is that my boss is extremely understanding and flexible – otherwise, I’d be in an even bigger mess. Also my parents continue to be extremely helpful. The bad news is I’m drowning in appointments and trying to maintain my work, while feeling like a 90-year-old woman every single day. I’m exhausted.

So yes, I’m alive, but I am most certainly not living. I’m frustrated and running low on hope. And that, my friends, is why I haven’t written much lately.