4.15.2009

Today

I woke up today from a benadryl induced coma and proceeded to the bathroom in my usual wake up pattern.  Months ago I was forced to swallow my pride in exchange for an occasional five hours of solid sleep knowing I would have to wear a protective undergarment (I can't bring myself to say the word; I guess not all pride is lost) throughout the night.  Taking benadryl before bedtime induces a solid sleep and in exchange I give up my ability to control my bowels. (Not like I have much control any other time).

I proceeded into the hallway with my usual lightheadedness, scaling the walls and being careful not to bump into the line of my grandfathers World War II photos that decorate our hallway.  I entered the bathroom just as my vision returned and slammed the door shut. After cleaning up as much as I could I began to draw a shallow bath to cleanse my body and relax my bowels.  As I shuffled around in the bathroom, I unintentionally woke up my mom in the next room.  She gently knocked on the door and asked me if I was okay, to which I assured her I was.  

As I sat in the tub concentrating on my breathing I listened to each one of my neighbors start their cars for their morning commute to work.  I thought about how much time has passed since I was one of those early risers making my way to work.  I began to connect each car sound with the various faces of my neighbors, the old junker cars being much easier to assign.  Just as I was drifting off into my thoughts, my brother tapped lightly on the bathroom door and told me not to hurry but he would need the bathroom soon for work.

Damnit, I thought to myself.  I wish I could just sit in this tub forever.  Somehow five minutes later I willed myself to get out.  I dressed in the clothes I was wearing before and made my way to the hallway where a large mirror that hangs above our hamper slapped me in the face with my own reflection.

I walked closer and examined my face.  My pale gaunt skin contrasted greatly with the redness in my infected eyes and the dark circles underneath.  My skin was no longer smooth and blemish free.  My hair looked considerably thinner and as I ran my fingers through the knots I questioned in my mind if my medicine was the culprit or my lack of proper nutrition. Naturally, I blamed the medicine.

Slightly hunched over, I lifted my shirt to trace the usual spots of sensitivity on my stomach, attempting to diagnose what kind of day today would be.  The spot by one of my scars was mildly tender as was another usual hot spot of inflammation above my belly button. Maybe, I thought, today would be a good day.  I turned to the side with my shirt still raised, partly to tend to my own vanity but also to determine how swollen my belly was.  I turned back to face the mirror and glared at my scars.  Inside, I hated myself for not finding strength in what they represented, but for thinking about how much better they look on my pre-flare up stomach.

I made my way back to my room where my mom was sitting on my bed watching TV.  I think I burst into tears when I saw her because the simple task of bathing had worn me out and I was glad she was there.  I laid on her lap much like a five year old would do as she gently stroked my head and reassured me that it was okay to cry.  She grabbed the pills on my nightstand and dispensed them to me.  I even took the mutiple vitamins I usually scoff at because I knew it would make her happy.

By now my tears had subsided and my mom returned to affectionately stroking my hair in her attempts to calm me down.  She told me she was watching the Food Network and while I am often put off by the talk of food so early I was happy to watch today.  As the program returned from commercial, a certain nameless Food Network celebrity chef popped on the screen.  I twisted my head up towards my mom and with my teary face and runny nose said, "You know I hate this idiot.  Give me the remote." Turning back to the screen, I couldn't see my moms face but I could feel the silent laughter coming from her body as she chuckled in response to my comment.  And as I laid there changing the channel to my favorite morning news crew, I couldn't help but to crack a smile of my own.

4.12.2009

Health Update #2

It was brought to my attention that I haven't updated this thing in a while.  This is because I have felt like absolute garbage the past two weeks and haven't really had a desire to use the computer let alone talk about me still being sick.

I had my MRI last Tuesday and a doctors appointment right after.  It was probably one of the worst days I've had health wise so being at the hospital for 5+ hours was torture.  I was dehydrated, lightheaded, and short of breath the whole time.  It was a rough day but I was glad I got everything done.

Not having the MRI results right away, I discussed treatment options with my doctor at the appointment.  He basically gave me three options.  Try another drug called Tysabri, add Methotrexate to my Humira treatment, or surgery.  I linked those if you are actually interested in reading about them because it's hard to explain how they work.

I wrote Tysabri off in my head right away because of the ridiculous "rules" that must be followed on the drug and incidence of a deadly brain infection with long term use.  Um, no thanks.  At least not right now.

So ultimately I decided to add a weekly injection of Methotrexate in addition to my Humira injection.  He has pretty much written off the possibility of Humira ever "working" but told me I can keep taking it, so I will.  He was also pushing for me to go on steroids again.  And while I am desperate for relief right now, I know steroids are not a long term solution.  I think back to the absolutely horrible side effects of steroids and how bad it messed with me mentally when it was time to come off them.  I don't think I could deal with it this time around.

A few days later the MRI results came in with good news that there was no abcess and therefore I would not need surgery.  Awesome.  But of course no good news comes without some bad.  The bad news was that I had a couple more fistula tracks (tracts?) then they originally thought.  But whatever, I'm already feeling what I'm feeling so that really didn't make a difference because it is not something they can treat.  Fistulas heal when your body heals.

So with the addition of a couple of antibiotics I've been still feeling like crap even after my first Methotrexate injection.  But my doctor says I won't feel relief for 8-10 weeks.  Aren't these waiting games just wonderful?

I'm wearing my marathon tshirt today that says "13.1 miles Crossing the finish line for a cure".  Ugh, if only it were that easy.