BIG. Part 8

Today was a hard-freaking day.  Some days, it's easy to wear a smile and push through and see the good in all this.  Today was not one of those days.  Today my leg hurts, my abdomen hurts...my heart hurts.  I feel so damn disconnected from the world, sitting in this house trying to recover.  People might complain about having to go to work, but until you're forced to stay home, alone in a world of aches and pains and nightmares and realizations of how you're so freakin' different now, you don't realize how grateful you should be to be able to work.  It's lonely here.  I miss my friends.  I miss my patients.  I miss me.  Today I looked at bathing suits online for our honeymoon....and the more I looked, the more mad I got.  Sometimes I just get pissed off.  It's not fair.  I'm 29 years old and I'll forever look like I've been in a knife fight.  Somedays I shrug it off, and somedays I look down and then breakdown.  This post might be a little angry.  A little explosive.  A little sad.  As I'm writing right now, I can barely see the screen.  It's blurry with tears of frustration.  I hope that by the end of today's post, I feel a little healed.  Thanks for putting up with the hurt I feel today.  I'm sorry to vent.  I promise I'll be back to being chipper next time.

Back to the story.... When I left off, I was telling you about that first week post-op after the closer surgery..the worst surgery.  Not only were the PTs around trying to get me moving a little, out of bed, to the chair, back into bed, but they started having me take little walks with the walker around the nurses station and back.  The first day I walked with the walker, my mom was transported back to her early 20s, with the video camera, watching her little girl and waiting for her to take her first steps.  My dad had just started a brand new promotion at his job in Virginia, so he was flying back and forth daily and weekly.  In the meantime, my mom videoed everything and called him 40 times a day to update him on everything that was happening.  My dad HATED being away.

When I got up on the walker for the first time and made my way around the nurses station without the PT holding me up, my mom followed in tears.  She was SO HAPPY!  I felt like a toddler who had finally let go of the couch or table and actually walked alone across the room before falling on her diapered bottom.  PT was FREAKING hard, let me just tell you.  I hated it when they walked in the morning, ready to put me through hell.  Hell to me at that point was getting out of the bed, standing there, taking a few steps, and sitting in a chair.  My affected leg has basically no muscle at all-- it had all been dissected out.  Plus, I was extremely weak after being in bed for 4 weeks on a ventilator.  Besides the PT, the rest of those days were rather fun, actually.  I'd watch funny movies with my parents, take frequent naps, and wait for nighttime, when Jon would come to the hospital right from work as well as my brother and sisters.  Everytime I'd see my brother Matt walk through the room, I'd get the biggest smile. My brother and I have always been tight, and he was a VITAL part of my hospitalization.  He, Jon and my Dad had the docs on speed dial and had frequent meetings to discuss the plan of care.  Matt always gave me a big bear hug, a kiss on the head, and something to make me laugh.  Jon would usually climb in bed with me and just falling into him was enough.  Having him there would finally make me relax, and I usually feel asleep shortly after he arrived.  He brought me a sense of calm and a sense of home.  My sisters brought me countless treats, movies, diet cokes, magazines, and beauty supplies.  They painted my toenails and fingernails, washed and braided my hair, and filled me in on the celebrity gossip I was oblivious to.  I remember when the told me Kim Kardashian was pregnant, I yelped so loud, the nurse walked in.  Then the four of us, me, Jess, Anne, and my nurse gossiped for about an hour about Kim & Kanye, the divorce, that crazy ex-husband, etc.  It was hilarious.  All of these things sound simple, but they kept me sane, and alive.

Besides PT, the other major battle I was fighting that week was food.  The doctors had advanced me to a regular diet, although I was still getting 24/7 tube feedings....which is basically nutrient filled mush that goes through a tube in my nose directly into my stomach.  As a result, I was FULL all the time.  Even though I was still dropping weight, the LAST thing I had was an appetite.  Plus the fact that there was a tube in my nose made it difficult to eat in the first place.  When my food trays came at each meal, my parents basically spoon fed me as many bites as I would take, which on a good day would be 3 or 4.  The food was disgusting, and every food that I used to like changed after I got sick.  It was so weird...waking up and having a completely different taste in foods.  Now, pretty much the only thing I eat is peanut butter and jelly sandwiches and low-calorie gatorade.  Occasionally, I can stomach some soup.  Other than that, still to this day, there isn't much I want to eat.  Every day, I had a stand-off with the Nutritionist.  She'd come in, fight with me about what I didn't eat, what I should eat, what I wanted to eat.  Each day, I begged her to stop the tube feedings, that they were making me full.  We never got anywhere.  She always left in a huff and I kept eating little to nothing.  One day, she brought in these Ensure juice boxes which were supposed to add 200 calories to each meal.  I HATED THOSE DAMN THINGS.  She made me write down everything I ate, so I started finding ways to hide the ensure juice box.  At first it was hard, because I couldn't get out of bed by myself to dump it down the drain in the bathroom.  So I'd pour all the milk into my cereal bowl and then pour the ensure juice into the milk carton so it looked like the juice box was empty.  There was a dresser right next to my bed, so sometimes I'd hide them in the dresser under my clothes.  When I was finally discharged my parents were cracking up, as they found about 20 of those ensure juice boxes in my drawers.  And wouldn't you know, that nutritionist never found out that I wasn't drinking them.  When I was transferred later to the rehab floor, the nutritionist from the Burn ICU told the rehab nutritionist that I LOVED those juice boxes.  The rehab dietician said, "What?? How did you get her to drink them? She won't drink them for me!"  "Oh no," Burn Unit Dietician said.... "She loves them.  Keep giving them to her."  They kept giving them to me, and I kept dumping them out.

About 2 weeks after the closer surgery, the nurses took out my catheter.  I was thrilled to get that thing out.  The only problem was, now I had to walk all the way to the bathroom every time I needed to go.  It was like a 30 minute trip every time.  Plus, I'd have to put on my call light and wait for someone to come in and help me get out of bed and into the walker.  I finally learned to get out of bed and to the bathroom on my own one morning, because a nurse got me into the bathroom and forgot about me there.  I sat there for over an hour waiting for someone to come help me get back to bed.  No one came.  So, I steadied my arms on the wall bars and pushed myself up and grabbed onto that walker.  The walk back to bed seemed like a marathon.  One step.......push........two step.......push...... I pushed my way all the way back to bed.  Getting back on the bed was an even bigger hurdle. i had absolutely no muscle strength in my legs to push myself up, so i grabbed the side rails and used what little strength in my arms to pull myself up into that bed.  My arms and legs shook for ten minutes with fatigue afterwards.  But... I HAD DONE IT!  I had walked by walker by myself.  I couldn't wait to show my family!  Obviously tears were shed that day.

And so it went.  Everyday I did something a little bigger, a little better.  Each day, another tube came out.  One day, Jon came in and I wasn't hooked up to the cardiac monitor anymore.  He freaked at first, because he was so used to the beeping and it was our security blanket, that monitor.  But seeing me "free" was a huge step.  He smiled a real smile.....something I didn't see much of during those weeks.  Jon told me recently that although he appeared strong to everyone else, his own head was battling itself and he wasn't in a good place.  None of us were, I guess.  But, we kept trudging forwards.  As I got better, the word "rehab floor" started getting thrown around, and I heard it, and it terrified me.  I was still in too much pain to imagine leaving the security of the burn unit.  My doctors were fiercely protective of me as well.  Anytime the PTs would start talking rehab floor, Dr. M and Dr. G would say "No....not yet.  She's not ready.  I don't want her down there yet. Throw out the calendar." Dr. G said.  That was, and still is, his favorite expression when it comes to me.

However, I knew rehab was coming.  And I was terrified.