My nurse has told me to start keeping a daily health journal, it will help me tell if I am having side effects and if the medicine is working. I decided this is the best place to do it. Those fighting the same illness as I am can read along, or those who need to know what I am feeling like on a particular day…the rest can just ignore it. Day one is just starting on the first day of my journal keeping, which happens to be the day after my first Remicade Infusion.
Day 1- I woke and for the briefest of moments I thought I felt alright. I know this feeling, half between dream and waking thinking I don’t hurt, or I don’t hurt badly. This thought was thrilling since I have spent the most of the last three days unable to leave my bed. But in a matter of seconds I was overwhelmed with pain. I wonder if others have this same phenomoen and if it can be bottled to last all day. My legs felt as if they had been crushed by a steam roller, but what was even worse was an intense pain going through my whole torso, this pain was atypical and acute (possibly related to the infusion?) and lasted about 30 minutes. I only made it halfway up the stairs, and lay there for a while until I could get help. I tossed and turned last night, but they said I might from one of the meds they gave me when I had an itch reaction to the Remicade. I was in so much pain that it took me a while to realize the wonderful part of it. I had no migraine. This may seem like not such a big deal but I had been plagued for weeks with a migraine that would range hugely in degree, sometimes being unbearable and sometimes just the slightest little inclination of a migraine, but always there. I have a doctors appointment today in the afternoon, getting stitches out for a biopsy of a lump. Not so much worried about it, but in a lot of pain so might ask my daughter for a ride there. I have a bunch of art shows this weekend so I won’t fight it if my body tells me I have to stay one more day in bed. Maybe I will ask if anyone has any TV series DVD’s they can loan me.