The Infusion Rheum
Every 8 weeks my life is a cycle of pain, brain fog, and trying to find my way as a disabled human.
I have Psoriatic Arthritis. I was diagnosed in June 2021 by the guy who considers himself the Dr. House of auto-immune diseases, and has some wickedly bad graphic design choices.
Every 8 weeks I drive 35 minutes away to sit in a medical facility and receive infusions of a biologic medication called Remicade. I walk in, confirm all of my information is the same as the last time, get my weight (the only time I see my weight, to avoid an unhealthy relationship with that number), confirm I have no surgeries or open wounds, and wait for the nurse to puncture my body with the butterfly.
For the next two hours, I sit. I have asked them to place the IV in the lower part of my arm so that when I inevitably have work to do, or if I choose to write like I am doing now, the infusion will not slow due to positional flow.
The space is cold, bright daylight bulbs illuminate the room with dozens of green medical chairs. There are a few select private rooms, with big glass doors (so not entirely private) but they offer some respite from the loud daytime television playing in the background on one side, or whatever hits are playing from the 80s, 90’s, and today on the other side. The doors also slightly block the din of conversation amongst the nursing staff & other patients. Today I managed to score one of those spaces.
Not everyone who comes here receives the same medication. Some are cancer patients, some have Chron’s Disease, but we all come here at various intervals for our meds.
On top of Remicade, I also receive an injection of Zofran to prevent the nausea that I have had before when receiving these infusions.
The nurses have all come to know me in the last two years. Most of them are familiar faces, but today I have someone new. She managed to stick my arm in a very quick way, and I didn’t even notice or feel her fishing for the vein in the quick time she did so.
The cost of my infusions would be insurmountable if I had to go out of pocket. Each one costs my insurance somewhere in the neighborhood of $3,000. No wonder they put out a spread for us. Sandwiches, hot chocolate, coffee, sodas, snacks, apple juice, tea… They don’t have to give us that, but it certainly is nice to have it.
Right now my bag of saline and Remicade is about halfway done. Soon they’ll come in to take my second blood pressure reading. They have to monitor this due to the slightly higher than normal prevalence of side effects with this type of medication.
This appointment is 8 days late for me. My aforementioned phone issues kept me from receiving the reminder call that I would be due for my date with the immunosuppressive drug that tells my body’s immune system to stop attacking and destroying the cartilage in my joints.
Yesterday I explained to my dad what the normal 8 week cycle looks like for me.
Week 1. 100%, I feel like I can handle/do most everything. I can work, I can focus, I can pay attention to my child. If I over-do it, I’ll feel it a little, but not much worse than other people. I tend to use this week to hyper-clean my house and get anything that has gone off track in our lives back in the right direction.
Week 2. 90%, I am capable of keeping up with the house, domestic chores, the pets, my child, etc. I am able to work on my days with childcare.
Week 3. 85%, I am still on top of most everything, but my body is a bit more stiff in the mornings and I need a few extra minutes to get my bearings in the morning.
Week 4. 70%, I notice some things start to slip… The floor that I had scrubbed perfectly clean a couple of weeks ago is now starting to haunt me. I can’t stand up for long periods of time without my back aching. Mornings start to go slower.
Week 5. 60%, I’m feeling it now, Mr. Crabs. My mental capacity lowers. It takes me longer to make decisions. The routine for the pets or breakfast or whatever I have had a good handle on goes by the wayside. Dishes start piling up as I’m exhausted by the end of the day and don’t have the stamina to stand in the kitchen to put everything away, and into the dishwasher, and then to sweep, mop, wipe everything down…
Week 6. 40-50%, I do what is needed of me for work but it takes me much longer. Sitting in a chair, in one position, for 10 minutes, causes my back to become stiff. I need to adjust how I sit frequently so that the pain from my body doesn’t distract me. Yes, I have Gabapentin and muscle relaxers to help, but they only marginally do so. My cognitive thinking is shot and anything more difficult than following a list of simple instructions for a recipe is hard to follow.
Week 7. 30-40%, I can’t do much this week. I get very little done. The sweeping has gone by the wayside. I haven’t dusted in a week or so. The pantry becomes unorganized and so does the fridge. I might have forgotten to order the dogs’ & cats’ wet food for the week. It’s too complicated to figure out how to get it at the best price and from where, so I order from Instacart. Work emails pile up. Money slows depending on the time of year and whether I’m forcing myself to work through the pain, borrowing from the next cycle to power through now.
That is a problem for Future Natalie, I think.
Week 8. 20-30%, I basically am back to pre-diagnosis levels of pain. Standing up for more than 5-10 minutes makes my feet feel like they are on fire, my lower back spasms, my right leg wakes me up in the middle of the night with horrific muscle spasms that would bring down a bull. I’m as close to Wyeth’s Christina as I ever hoped I wouldn’t be.
Infusion day. Body stops fighting itself. More susceptible to infections, colds, and liver damage.
It is a calculated risk of benefits versus negatives. At least now I can walk up the hill that Christina pined to climb.
Like my lupus and Saphnelo. Insurance covers infusion every 4 weeks. By week 3, after infusion I am in agony.