Nightmare Before Christmas

I began this piece by reading my medical records from December of last year to find the exact date that everything tipped out of control. As I flipped through the pages, I started to feel panicky so I forced myself to stop reading. I wish I could listen to a Christmas song without thinking about last year, because I want to be in this moment, not stuck somewhere else.

The story goes something like this:

I told my doctor that I was in remission at the beginning of November of last year. It was the first time I’d owned the word instead of having it pushed on me, like an administrative red stamp across my forehead. My GI would try to stamp me every six months or so, and I would usually end up in the hospital the next week, pumped full of narcotics and steroids. But last November, I started to feel something change. I could feel the pre-Crohn’s Chrissy returning, and I was happy to see her. I decided to return to work and reclaim the life I’d missed.

Two days after I started working I called my husband, near tears. My joints burned and I couldn’t sit still. When I typed, I could feel the pain echo through my fingers to wrap around my wrists, burrowing deep in my forearms. My left hip was swollen and I spent the day sitting on a heating pad. Periodically, I would fill the kitchen sink with hot water and dip my hands and wrists until my skin was neon pink. I was lucky that I worked from home and could hide the fact that I was sick. I felt ashamed of my body. Ashamed that I was weak.

I started to see a rheumatologist who immediately scheduled a nuclear medicine whole body scan to get a handle on my wide-spread inflammation. I went to the hospital for the test a few days before Christmas and finished my shopping in the hospital gift shop. I waited for word, but my new ‘ologist had written the orders incorrectly and I exposed myself to more radiation to find out that the bone cancer I never had was no longer there. He shrugged his shoulders and I went home to my heating pad and kitchen sink. I was used to the drill–“autoimmune disease” equals “you’re on your own”.

During that same time I had a Remicade infusion that almost didn’t work. After the nurse began an IV, she withdrew blood for a routine blood test. When she pulled back on the syringe, my blood sluggishly filled the tube. It was not crimson and thin, but pink and thick and I wondered if she’d ruined the sample somehow but I knew better than to ask. I wanted to get the infusion over with so I could go home, meet my kids’ school buses, shop for Christmas, make dinner, and work.

Remicade Infusion

Remicade Infusion

Less than an hour into the infusion, my arm started to burn. Instead of entering my vein, Remicade was leaking under my skin. The nurse inserted another IV, and less than ten minutes later, Remicade dripped from the IV site and onto the floor, almost as if my body was determined to reject it. Each Remicade infusion cost my insurance $7,000, so you can imagine the panic I felt. And, most importantly, I knew I needed it because I was now flaring again and my body was a Crohn’s mess. I called the nurse who started another IV and she slowed the infusion down to a microscopic crawl. I was usually able to leave my Remicade appointments after two hours, but I was there that day for over four.

One of three bruised IV sites a week after the infusion.

One of three bruised IV sites a week after the infusion.

A few days later, my gastroenterologist called. He told me that they couldn’t run the routine blood tests because my blood was filled with fat. He explained that my total lipid count (which includes total cholesterol and triglycerides) was so high that they couldn’t even give me a number or identify the lipid types. He asked me to come back in to have my blood drawn the next day after fasting.

As I was waiting the next day, my eyes passed over the crease of my elbow and I saw a bump that didn’t belong there. It was a yellowish-peach color and wasn’t symmetrical and had apparently just appeared. I asked my GI what it was but he shrugged it off. The lab tech who drew my blood had a furrowed brow but she didn’t have to say anything. I could see for myself that my blood was as thick as paint. It was then that it hit me–my veins were full of sludge and my heart was working overtime to pump it through my body.

I felt dizzy. Sick. I thought of my father who had quintuple bypass surgery when he was 48 years-old. I was 36. Twelve years. Could I pump sludge for 12 years?

My fasting trigylcerides were over 700; and within months, they reached 2000 even on medication. I was told that I had hyperlipidemia and my total cholesterol (not counting  my very high triglycerides) was an ungodly 340. Those waxy bumps that popped up on the inside of my left arm were eruptive xanthomas. The fat from my blood was depositing under my skin–and all of this, minus the actual numbers, I found out through my own research.

First set of xanthomas

My GI told me to see another doctor–he couldn’t treat me for this. Everything was closed. It was Christmas and doctors and nurses have families they want to enjoy. I tried to enjoy mine, but all I could do was worry, try not to think of sludge, and wonder if I had the strength to add another condition to my list.

7 thoughts on “Nightmare Before Christmas

  1. Chrissy, this post brings up so many memories for me. I vividly remember feeling ashamed of my body, as if I were somehow defective. I was always desperate to hide that fact from people, terrified they would somehow see me as broken because of my illness. I hope you know how much I admire you for owning your body, for sharing all of this with the world. I’m proud to be your friend.

  2. I have chronic pancreatitis. Take 80 mg of statin and 105 of fenofibric acid daily. Also take 6 grams of L- arginine daily. Have had bad eruptive xanthomas for almost a year. On bottom, knees, feet,,back of arms.
    About 120 total granular bumps painful if touched. I am getting desperate. Have been on meds fjor about 3 weeks they won’t go away! My diet has been altered. But nothing is helping.

    • I’m so sorry, Richard. It is hard living with this. It sounds like you have it much worse than I do. I’ve thankfully never had pancreatitis. It took me a good six months to see my triglycerides go down on meds. I’ve gone from almost 2,000 to 400. My cholesterol is finally under 200. What finally helped me was Trilipix in addition to Lipitor. I’m not sure if it matters what type of fenofibric acid it is but it ended up mattering to me. The Trilipix is the only one that’s helped. Also, I’m sure you are, but make sure you’re seeing an endocrinologist and not a general practitioner for the meds. Have you tried niacin? I know someone who went years with high lipids that never went down until he added niacin and that finally did the trick. Also, they say the best is exercise. I’ve been slack on that due to my hernia and abdominal pain from Crohn’s but try to push through it.

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