Still Miles to Go

Today you are You, that is truer than true. There is no one alive who is Youer than You.
-Dr. Seuss

Sometimes it surprises me how happy I am. How comfortable I am in my own skin. A year ago, I’m not sure if I could’ve seen myself this happy despite all that has changed (my zip code, my health, my occupation, my income, my aspirations, etc.). But I’m honestly, truly happy.

Keith and I deal with a ton of stressors with our daily life that shock many people. For instance, every day this week, I’ve had at least one medical appointment, over half of which were in Boston. (This is not out of the ordinary.) In addition, we’re watching my niece and nephew while my sister recovers from surgery. (This is something that Keith likes to call “birth control.”) We also deal with daily medical regiments including IV nutrition, stoma care, catheterizations, sterile procedures, and medical interventions. (This is in addition to Keith’s full-time student status and my work tutoring, researching, and volunteering.)

I had appointments with both GI and neurology this week. Amidst serious talk of ileostomies and serious bowel regiments, we found humor in our situation. Dr. K – after commenting on how much press my GI system had gotten in his office lately – said of my gastrointestinal system that “it’s quite simply pretty crappy.” Yep, we’re pretty comfortable talking both seriously and casually with our physicians. Today we even had Dr. S (my new neurologist) joking with us. And he’s known for being serious.

The consensus this week is that I’ve seemed to settle in at a new “baseline.” My bowel still sucks, but we’re putting off talk of an ileostomy until after we see if a type of physical therapy aims to strengthen and train my colon to work. Dr. K doesn’t have any delusions that it will drastically change my situation, but we’re hopeful that it might help decrease the medication we’re trying to (unsuccessfully) push through my J-tube each day. Other than that, we are strongly pursuing a tunneled central line. My home nurses have been saying I need one for a good long time and are hoping for a port to encourage one of my few physical joys: swimming. They have even promised to come out multiple times a week to de-access and re-access my port during the summer days. I’ll write more on the central line dilemma later, but right now all you need to know is that my PICC line has required multiple doses of TPA (to unclog it) and the dressing is causing massive skin breakdown and infection due to bad allergic reactions (or “intolerances”?) to tape and skin preps.

Yesterday was our first meeting with a new neurologist (“Dr. S”). We’ve been gradually transitioning all of our care to MGH and from pediatrics to adult physicians. Dr. S came highly recommended. And he did not disappoint. After hearing my story and the plethora of issues, he immediately offered to take the helm of my care. He said it would involve numerous unbillable hours, and that although he wasn’t a primary care physician, it was obvious I needed someone championing my care. He said that until there was a clinic open that treated “adults who had seen 15 neurologists and had mitochondrial cytopathy,” he was our guy. I feel really good about having him on our team.

In the midst of all the week’s appointments, we’re currently battling with insurance for vital services like IV medications and home modifications. We’re talking to all the various parties involved in pursuing the placement of a more permanent central line. We’ve also made numerous calls trying to coordinate (finally) adding part of my “mito cocktail” to my TPN. We’re hoping to have all these issues resolved in the next two weeks as Keith is finishing up the term at Brandeis and will have more time to help me out.

Right now, I’m looking forward to the next couple of weeks as Keith finishes up his teaching responsibilities and will have a more flexible schedule. We have plans to attend the UMDF National Symposium in Chicago come June and hope to return to California at some point later in the summer. The plan is to have tons of fun, enjoy the sun, and get everything planned for September’s Show of Hope.

When it comes down to it, I think we need to feel comfortable with our crazy lives. And we do. It helps us more easily find that joy. It’s not that I’m happy being sick. I’m just happy being me.