I just returned from Chicago after a blitz of doctors appointments. It was time to get my medical team on board. My two core doctors are my internist and my psychiatrist, both of whom have seen me for about three years prior to the big ICU incident, so they have known me a long time and traveled the journey from near-death to a more-functional present with me. I wanted them to know my plans.
In addition to meeting with my core team, I also had my first appointment with a dietitian. As part of my training regimen, I've documented my food intake for the last two months. Unfortunately, I haven't been able to drop below my current weight for some time now. I have a reputation for eating small portions, so initially it was hard for the dietitian to figure out why I'm not losing weight. Her hypothesis was that the main problem is that I don't eat for a couple hours after I wake up. My boxer brother, Dan, has taken issue with this habit as well, so I'm going to start eating when I wake up, regardless of the fact that it seems like a revolting idea.
Previously, after riding my scooter for twenty minutes, I would be exhausted for three to four hours. My internist thinks that the reason isn't due to general fatigue, but the strain of balancing while riding -- made difficult by the fact that I have no abdominal structure. He urged me to reconsider my current scooter for a three-wheeled model. Well, Michael and I happen to know that the three-wheeled scooters with two wheels in the back are very dangerous, but Piaggio came out with a model last year, the confusing named Piaggio MP3, with two wheels in the front. This model is reported to be extremely stable. One would think this would be a no-brainer: get the MP3, right? However, this scooter is quite pricey, and of even greater concern is whether or not I can push it forward, just to roll or maneuver it.
The most challenging of my hidden disabilities is that I am at great risk whenever I undertake an action that creates any intra-abdominal pressure. This means an action that could blow out my surgery. At the time of my surgery, it was the largest abdominal reconstruction on record. They used the largest muscle in the body (the latissimus) in what is called a "free flap" or free tissue transfer: the movement of tissue from one site on the body to another ("free" implies that the tissue, along with its blood supply, is detached from the original location and then transferred to another location). The plan was to move the latissimus, along with its associated skin and connective tissue, or fascia, across my abdomen to keep my internal organs in. The twelve-hour surgery required six months of preparation. Two balloons were inserted below the skin in my back. These were inflated with saline a couple times a week to expand the skin on my back, so when the free flap was removed I would have skin to close the resultant opening in my back. If I blow out this reconstruction, my surgeon honestly doesn't know what he is going to do to repair it again. My surgeon wrote the only text book on abdominal reconstructions, and if he doesn't know how to fix it, I'm screwed.
Now, I'm not supposed to do anything that would cause that intra-abdominal pressure, such as straining to open a jar, or pushing or pulling on a heavy door. Likewise, I am not allowed to jog or ride a bike. So, when I push on the MP3 with what I have learned is an appropriate amount of pressure, if it doesn't move, well, that's it. Except, Michael just found out that there are three versions of this scooter and we don't know which one I gave my little push to, so come Spring we need to go to another dealership with the smallest and give it another go.
Lastly, I met with my psychiatrist with the hope of adjusting a couple of my medications. I take one medication at about 10:30 pm that helps me to get to sleep. It usually takes a couple hours to knock me out, but then the problem is that it lays me out for about 10 hours. I've been taking this med for quite some time; once we got a combination of meds all working together we were fairly reluctant to change it. Now, though, I find I have a hard time consistently cramming a workout into what is already a busy half-day. I'm doing it, but it would be so much easier if I could be given some time back. Turns out, the manufacturer recently offered an extended-release version of this medication which is supposed to have a slower journey to "the wall" (what I call sleep), a hard kick to sleep, and then a shorter duration of sleep. Now if it actually works this way, I will be so happy and relieved.
Last night I fell asleep attempting to write this blog, mid-sentence. This experience backs up the existence of the purported "hard kick." And I woke up at 9am!!!! One time does not a sample make, so hopefully the next few days will prove to be similar.
If any of you have more gossip on the Piaggio MP3, please comment on this blog and let me know the word on the street.
Ara Lucia Ashburne is a writer, artist and director with physical and hidden disabilities. She is booking a reading tour, featuring selections from her narrative (August 10 – November 1 2011). She is also an advocate for International LGBT human rights, a social media votary, nerd lover, and food sensualist.
She divides her times between Berrien Springs, Michigan and Chicago, Illinois.
You can also find her on her Facebook page at Ara Lucia Ashburne and on Twitter at @Ara_Lucia.