Sunday, June 29, 2014


So, I Remicade-ed on Friday.

I was a wee bit anxious about this treatment - this is my second infusion at a higher dose - and last time I had a bit of an infusion reaction. Chills, nausea, significant fatigue ... I was not looking forward to experiencing this again. 
However... it's that or a flare. I'll take the side effects over full-blown UC.

I was not as prepped as usual, as sleep won in the early morning. I made a chocolate-flavored green smoothie that I drank from a coffee mug. It's speckled with chia seeds and bits of coconut oil!

 Despite my lack of morning preparation, I did manage to pack lunch and snacks. A necessity considering the state of most hospital food.

Mmmmm organic blueberries!

I also brought myself some reading material:

I am aware that I don't need to lose significant amounts of weight, but I loved her first book Meals that Health Inflammation (review to come!). She has such an incredible way of simplifying the science of nutritious eating, and her recipes are stellar. It was an enjoyable ready during lapses of consciousness.

So, due to my infusion reaction, I was offered pre-meds. I was never given these previously, as I tolerated the infusions fairly well. It seemed fairy innocent: oral tylenol, IV benadryl, and IV steroids. 

While the IV benadryl was infusion, I noticed that my left forearm was itchy. I figured it was the tape (some types of surgical tape give my rashes), so I removed the tape from my arm. When the IV steroids began running, at a higher rate than the benadryl, I noticed a burning to my forearm.

Then excruciating pain.

I was rubbing my arm furiously and sought out the nurse, whom brought me a warm blanket to wrap my arm in. I am sure I was a sight: deep breathing, my left arm wrapped in a huge blanket, and shaking my arm to lessen the pain.

When the pain finally ceased several minutes later (which, in my mind, felt like forever) I was hit suddenly with incredible dizziness and mental fog. I was stunned beyond belief. I couldn't even read my book, as the sentences seems nonsensical. I was too nervous to try and stand/walk to see if that would improve the situation as.... I wasn't sure if I would be able to stand!

Eventually powerful fatigue set in. I tried to fight it, as I was getting my vital signs checked every 10 minutes and didn't want to mess up my sleep routine. Despite my best efforts ... I fell  fast asleep. For two hours. Waking up intermittently when my blood pressure cuff would inflate and to have the Sa02 monitor place on my finger, but falling asleep promptly after. The nurse left the blood pressure cuff on my arm to make this process easier, and I was in complete agreement. Less maneuvering and more sleep.

I eventually woke up, drowsy and foggy, but was able to feed myself and flip through a few pages of my book. I was still feeling a bit dumfounded from my reaction to the benadryl and/or steroid, but was relieved I seemed to be recovering.

Lunch was a mixed greens salad, strawberries, sprouts, chickpeas, pumpkin seeds, and maple cider dressing.

Delicious and light.

I got up for a short stroll along the tiny unit, just to wake myself up and gain more energy. I had to drag my little friend with me as I trudged along.

If I look tired, it's because I was still in the process of waking up!

With the pre-meds and infusion, I was in the hospital much longer than usual. Apparently this will be ongoing ... which means more hospital time. Boo.

When I went home I went right to bed and napped. It was a warm day, so I had my fan on full blast with my windows open. Along with my chamomile-jasmine-vanilla aromatherapy infusing ... I had a soothing sleep.

My late night dinner: Organic chicken fried rice and maple-glazed brussels sprouts.

I've been going over this last Remicade infusion in my mind all weekend. It was more intense than usual, and it frightened me in a significant way. I did not like feeling so out of sorts, out of control, out of my own skin. As much as I am dependent on this treatment to put me into remission, I keep pondering if there is another way. A way without side effects, hospitalization, and intense fatigue!
However, I am not going to dramatize upon this at the moment. I am hoping I will have an epiphany, or some miracle with present itself, but until that time comes I will have to continue on with present treatment.

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