August 27 2017

Infusion Part Two

I feel this unearthly tumultuous dread prior to an infusion. ‘Did I drink enough water? Will they get the IV on the first try? Will my vein blow if they try to take blood samples? Will this be the infusion that causes an allergic reaction? What news will the PA offer up this time? And what medications will they prescribe?’
 

I am a very hard stick so they usually go through my hand with the smallest butterfly needle they have. Fun fact, hand IVs can be more sensitive–something about innervation. Once the IV goes in, I can usually feel an uncomfortable sting-like sensation throughout my entire infusion, yet my arm is always cold to the touch. I don’t know about everyone else, but I can taste the saline. I have always found comfort in this. Maybe that’s odd, given the nature…but to me, it has always symbolized success.
 
The last few infusions have rewarded me with giant headaches almost immediately after the drip starts, so I have started to come prepared with Ibuprofen and bottled water. Thanks to my mother-in-law who came with me last time, I realized that actually eating something during the infusion helps, too. Seems like a common sense thing, but I never thought to bring much more than crackers.
 
Yesterday, because my infusion time was earlier and the clinic is an hour and a half away, I decided to leave with plenty of time to spare. When I neared the clinic, I realized I had an over-abundance of time, so I looped around to wait in line for Starbucks. Starbucks is actually my least favorite coffee place; it feels uppity and disingenuous to me, but I love their sandwiches and I only wanted a small coffee anyway.
 

Why uppity? Well, I couldn’t remember the stupid coffee size names, and I wanted to feel like I belonged, so instead of saying small I said venti. I am aware now of how wrong that was. See, the only two sizes I could remember were grande and venti, for obvious reasons (to me), I assumed venti would be smaller than grande. Lesson learned.
 

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I checked in, laughed with the receptionist about my coffee blunder and made it to the chair without much incident. IV was managed on the first try (thank you permanent needle marks) and as the first patient of the day I got the coveted chair near the bathroom, score! This is when the interrogation started. (It feels interrogation like, anyway.) I know the nurses and PA are only doing their job, I just hate feeling like the kid on a stool in the corner with a dunce cap on. I hate feeling like my feelings and emotions aren’t enough to combat their often-times robotic and medically inclined attitude.
 

For almost a year now, I have had an anal wound that won’t heal. At this point I have pretty much tried everything and nothing seems to be working….to which they are constantly wanting to do rectal exams. Yeah okay, you are trying to make me feel better, and yeah okay it helps to know how the area is or isn’t healing, but come on. Just because you know me better from behind doesn’t mean I want a constant stream of exams.
 

I guess even they figured it would look the same this time around because they didn’t do an exam. Instead, they told me how they want me to take pills on a more regular basis. Codeine. A Tylenol-Codeine hybrid, but codeine all the same. I have avoided taking addicting pain pills on a long-term basis for practically my entire diagnosed life. It might seem insane, but I am frustrated and legitimately worried about starting these pills.
 
The doctor or PA usually make their rounds right away while the nurses schedule the next treatment, verify the med list, take vitals, and then close the curtain and let me be. This is usually when I become inundated with emotion. I try to sleep the experience away but with the burning IV site, pounding headache, worn down body, and overwhelmed brain, I usually cannot sleep. Not until I get home anyway. I always seem to power through the IV flush, hit a second wind for the travel home, and then crash like a crazed new parent minutes after getting back. The headache usually persists until the next day, sometimes even the day after that.
 
The worst part about infusion day and the day after is the absolute lack of energy I have. Between the headaches and the fatigue I have a hard time wanting to leave my room. Jon and my brother do a good job holding down the fort so that I can try and relax. Naturally the guilt-ridden anxiety overwhelms me and I try to take on more than I should. Sometimes it’s just a donut run with the boys or a load of laundry…but it takes it’s toll all the same.
 
Despite all of that, I am grateful. Amidst the darkness and 900 MG Remicade-induced despair, I see hope.


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Posted August 27, 2017 by in category "Crohn's Disease

1 COMMENTS :

  1. By I tripped over a stone. (Post author) on

    Wow. Crazy interesting! What a journey you are on! I just started iron infusions. Nothing compared to what you go through. Thank you for sharing this! ~Kim

    Reply

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