August 23 2017
I think of this blog as my safe space, as my place to vent and share my frustrations. I know I am lucky, extremely lucky. I also know sometimes I can come off as ungrateful or like I take things for granted which is never my intent. That being said…let’s talk about pre-infusion week!
I get Remicade by IV every eight weeks. Maybe it should be every seven or even every six, but eight weeks is what the insurance approved. (Or will be approving…I am still unsure how all the insurance stuff will pan out. I received another letter about another bill they wouldn’t cover, but that can be talked about some other time, or never; I am good with never.)
In my job I get eight hours of sick leave for every full month worked. Despite treatment being every other month, I always seemed to be burning leave as fast as I was getting it–which in turn was stressing me out and making me go to work on days I probably should have just stayed home. It created a horrible ripple effect spanning all aspects of my life.
After a few chats with my Administrator we worked out a flex-week plan. The week leading up to my infusions, I can work a full 40 hours in 4 days and have my infusion on the 5th day. Sounds too good to be true… probably because it is.
The point was I would get my full 40 hours of work, not have to use sick leave, and have the weekend to recoup from treatment. Here’s the rub: I also commute two hours a day. A typical 8-5 is actually 6:30am-6:15pm (on a good traffic day). In order to make a 10-hour day work, it turns into 5:30am-7:15pm. Then factor in the other aspects of my life (forgetting for a moment the source of all the hub-bub): laundry, dishes, dinner, time with my kids, or hey…even just a shower.
Moment over, now add in a chronic illness and all the baggage that comes along with it for good measure: insomnia, pain, fatigue, muscle aches, nausea, headaches, and my favorite–brain fog. In order to get into my work area, I have to go through a door with a card reader and then a door with a keypad. Naturally, the brain fog kicked in this morning and for the life of me I couldn’t remember the code. At every error my anxiety grew. As my anxiety grew, my irrational and fogged brain whirred away. I kept hearing “2319” (the CDA code from Monsters, Inc.), and feared one of the sheriffs from the next office would come out. Like I said, irrational! I was mostly panicked that I would be stuck waiting the 45+ minutes for someone to show up and let me in, meaning I would have to stay an extra 45 minutes. Thankfully though, I closed my eyes and let muscle memory guide me. I knew the information, I just needed to slow my breathing and let my brain focus.
If you aren’t familiar, the week prior to infusions is basically one week of withdrawal hell. I get moody, irritable, anxious, and incredibly emotional. In order to fulfill all of my personal and professional obligations I have to minimize other things… the things I would usually consider a luxury as a working parent: reading, taking a bath, or even sleep–I can just forget about it.
Insomnia is its own hell. It forces you to lay awake in a pool of resentment, drowning in your mind. For me, my senses get heightened. The air from the fan feels colder, the sound of Jon’s breathing seems deeper, and the darkened space of my room seems darker. The possibility of sleep lingers just barely out of reach.
I survive hell week on caffeine and crackers. A down-right horrible combination. A fact I am reminded of at the clinic, when despite my best efforts to drink more water for optimum hydration, it still isn’t enough to dilute the excessive caffeine.
Despite my personal trepidation, I am thankful for the creepy sleep station in the building next door. The small room is made up for resting; it is a small room without a lock that has an old, school-nurse-style bed. Although the room is “secretly” located inside the women’s restroom, I am still anxious to fall asleep. It doesn’t help that the foot traffic is heavy and it constantly feels and sounds like someone is going to burst in at any moment. Yet…the room is a necessary evil. Power naps are sometimes the only way I get through infusion week!
I only have one day left until treatment! Thank gosh. This week seems harder than all of the previous infusion weeks.