My Story Part Twelve: My time at the swanky hospital, UCSD.

Hey everyone!  We are on our way to Sacramento, California to attend a seminar for TPN patients!  We are so excited to have been invited to come to this event and provide input on some new possible products and to learn more about what’s happening in the TPN world!

Jumping in today where we left off yesterday!

The very next day, I was on my way to my new (shared) room at UCSD!  I had my sassy powers all lined up to get into the first private room available!  When I arrived, my new roommate didn’t even wave back when I was wheeled into the room!  (If you’re up on your TV shows – as Stephanie Tanner from “Full House” always said, “HOW RUDE!”)   Now for the good news – this hospital was swanky as all get out!  It felt like a nice hotel. It had wood floors, big palm trees in the lobby, built-ins for the TV and cute little drawers for my clothes and stuff!  And even better, before I had spent a full night, my nurse came in to tell me that my private room was ready!  Oh thank heaven for diligent nurses.

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The hospital lobby! So swanky!

After a couple of days with more x-rays, blood sugar and blood pressure drops, my doctor came in and had a sit down with me.  He told me I needed to start back on TPN.  He said they were going to place a PICC line (remember the last time I had a PICC and didn’t use my arm for the entire week of having it? Yeah, that kind) and get me to a baseline of health with the help of TPN.  I told him I did not want to lead them to believe that I was going to continue on TPN and I wanted answers to how I was going to get better.  But at this point, I did agree that TPN was the safest option.

While I was getting mentally prepared for the PICC line placement (I thought I would have at least a full day to do this since hospital time usually makes things take seven times longer than you’d expect) someone knocked on my door and came in.  They had the terrible cart with them that means PICC line time.  I hadn’t even had an hour to process this mess!  Get out of here!  But no, it was time.

My first question was what I was going to be given so I didn’t remember the procedure.  I can’t handle vein talk. I can’t deal with people looking around on my arm with a sonogram thing to find the perfect vein.  I just cannot.  I knew I wasn’t going to get through this without some help from some drugs.  After we sorted this all out and I was less anxious, I got my second PICC line placed and they got me started on TPN!

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My sweet friend Vicki sent me some adorable PICC line covers that she made! The sweetest.

Continue reading “My Story Part Twelve: My time at the swanky hospital, UCSD.”

My Story Part Eleven: The one where I go to California

Sorry for the delay in getting this post out!  I know some of you are following along day to day.  The last few parts to this story may come out with a couple days in between.  My husband, Anthony, and I are going to Sacramento to attend a seminar this weekend!  I will try to and write as much as I can while I am gone!

Everything I was trying to ignore during this scary time (I believed that everything was fine though, due to all of the “It’s going to get worse before it gets better,” talk) had me desperate to get away.  I decided to make the eight hour drive to Perryton, Texas, (the town I was born and initially raised in) to visit my great Aunt Lucy and several friends who lived in the area.  A couple of days after July 4, 2013, I did just that – I loaded up my tiny green Fiat and left for Perryton.

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There is a super cool dinosaur statue that I always love to stop and see on my way to Perryton!

When I got there, I had to explain to Aunt Lucy the crazy diet I was on several times.  She was well into her 90s at the time and still thrives on chocolate.  She knew a little but hadn’t really been told a lot about all of the “tummy troubles” so it was tricky for her to understand why in the world I wasn’t eating any fun sweets!  I stayed true to my diet and took my gross supplements and drink things but I was barely able to tolerate any of it.  I really don’t know how I was still able to function after that long car ride.

After a few days, I went home knowing I had a flight to southern California in a couple of weeks.  I was going to visit Lukaza (a friend from the pre-college program at California College of the Arts) and my Aunt Judy!  I was so excited about this trip.  I craved getting away.  I don’t know what it was – perhaps the desire to run away from what I knew was all bad news.

On July 22, 2013, my dad took me to Dallas Love Field to catch my flight to sunny California.  He asked me several times if I felt okay enough to make this trip.  My dad is cautious and asks questions and he knew that I was not doing well, but ultimately he supported my choices.  I was so weak I had to be pushed through the airport in a wheelchair, but I was adamant that yes, I was fine and wanted to get on the plane to go to California.

As we waited for loading, we sat and talked and laughed in the waiting area.  My dad recently told me that as the attendant wheeled me down the catwalk to the plane, a couple sitting near us in the waiting area had asked if I had just completed treatment for cancer.  I was so weak and looked so bad that my plight was obvious to everyone (even complete strangers).  Nevertheless, I flew out, with all my gross supplements and I was ready to enjoy some California sunshine.

I landed in Los Angeles where my friend, Lukaza, and her mom, Suchi, picked me up. I’m sure they were terrified just looking at me but they’re so sweet and didn’t say a thing.  We went to their house in Santa Monica and they listened to me tell them all about this diet and the hopes I had for my health.  Suchi took us to pick up a dinner that fit my guidelines.  They were so accommodating.

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Lukaza and I at her house!

In the middle of the night though, I started vomiting.  The next morning, I was so weak I couldn’t get out of bed.

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My Story Part Ten: The one where they told me they could “heal” me.

This is when the really crazy stuff happens.  So, let’s get this show on the road.

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About a month into stepping into no TPN territory, I decided that selling insurance wasn’t working out.  In October, I started another job as a nanny.  I don’t know what possessed me to think I could do that rodeo again, especially without the support of TPN nutrition?  But I tried.  This time the arrangement was not a live-in situation, so at least I was able to go home to get away from work!

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During this time, I truly only did work in my life.  I was always too exhausted to do anything outside of work.  Even on weekends, I laid around trying to keep up with myself.  It was terrible.  At the same time, I still managed to have some fun.  I planned a Halloween party at my little downtown no-window apartment.  I got together with friends when I felt like it and was able to.  I painted my entire apartment because I was allowed to do whatever I wanted with it.  So, while I was exhausted the majority of the time, I was still living a full life.

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My Story Part Nine: The one where I get several port infections and go to art school.

I left you on that first port infection cliff hanger, so that’s where we’re starting today! In the summer of 2011, after my senior year in high school.My Story Part Nine 1

Central line infections are no joke!  They can lead to sepsis and even death if not treated properly.  I had gone five years without getting an infection, which is pretty impressive.  But this led me to believe there was no way I could get one even though I’d been warned about them since the first day.  Chills, fever, body aches – this list sounds a lot like the symptoms of many illnesses, doesn’t it – especially the flu.  The kicker was that my “flu” only happened at night when I was infusing TPN.  I should have realized way faster than I did.

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I finally connected the dots, accepted what was probably happening and ended up in the ER. They immediately started me on antibiotics.  After several days, when my cultures (blood tests that are observed for several days to see if they grow bacteria) came back clear, I was sent home on IV antibiotics.

Continue reading “My Story Part Nine: The one where I get several port infections and go to art school.”

My Story Part Eight: The one where I find art and graduate

Welcome back!

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Let’s hop back into our story in May of 2010 with a huge update that I hadn’t been in the hospital since November of 2008!  That’s a really long stretch of time for me.  Of course, I still had the never-ending symptoms and missed a ton of school.  But I was learning what foods would work, how to more efficiently distribute my energy so that I didn’t wear myself out and keeping that straight ‘A’ student life alive.  All of this while managing my home health care visits, ordering TPN supplies weekly, keeping up with doctor appointments and doing my TPN set ups.

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Looking back, it’s pretty impressive that I was able to keep up with all of these things (mind you, I’d been doing this since day one of TPN when I was thirteen).  While some people would question why I was put in charge of everything, I’m really glad that my parents chose to give me these responsibilities because it wasn’t so mind boggling and terrifying when I got out on my own.  I knew my stuff and was confident in my knowledge and abilities.

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