At the end of every month, I take a half day off of work and head to the Houston medical center and my rheumatologist's office, where a room full of recliners, pillows, warm blankets, and IV poles awaits me. My infusion nurse, Jessie, takes my weight, blood pressure, and temperature (my meds are calculated according to my weight and if my temperature is too high, it could be dangerous for me to get meds since the meds suppress my immune system even further). I pick a recliner to lounge in and Jessie starts the twenty minute process to dissolve my meds in some solution. My IV is started and the very slow drip starts. We had to slow the drip down about four months ago because my infusions were starting to hurt. My veins have built up scar tissue from the number of sticks and IVs, and infusions can be pretty uncomfortable if the drip rate is too fast. Thankfully, a slower drip rate has made the infusions pretty much painless. But, the slow drip rate means sitting in that recliner for three hours as the biological cell-killing meds drip into my veins.
All around the room are other infusion patients, at various stages of their infusion, reading books, napping, and usually, chatting with other patients.
Many of us are on the same monthly schedule, so there are familiar faces, lives lived over the past month to catch up on and ample time to commiserate, share, and encourage one another in the health trials we are all walking through.
I've talked with a woman in her eighties, all dolled out in flashy bling, who has rheumatoid arthritis that has stolen away her ability to play her beloved piano during the late afternoons when her loneliness is the worst. We talked about other things that she might be able to try when the sun started its descent that would still bring distraction and memories of happier times.
I've spoken with a man in his early forties with neural sarcoidosis, who recently had a port installed (a semi-permanent IV near the collarbone to allow those who need frequent needle sticks to save their veins). We talked about our mutual love of travel, although he was now confined to the forty-eight states due to the complications of his diseas. His envy that I was still working was apparent and saddening...his disease had debilitated him to the point of not being able to function at work, and he spoke of all the friends he had lost, they didn't understand why he had to cancel plans so often, or why he wouldn't hang out like he used. "It's not that I wouldn't, it's just that I couldn't, or can't" he stated sadly, "you know how it is." I hesitated at first, not wanting to rub salt into a wound, but decided to press ahead, "well, I do know the frustration of having to constantly cancel plans because the Disease decides to mess up your plans, but I've been blessed with incredibly understanding and curious friends and family. I'm thankful for that." He smiled, again sadly, "wow, you're lucky." He paused for a moment, then starting telling me about his amazing wife, how she supports and sticks with him through the ups and downs. "Yeah, I'm lucky to have her." You are blessed sir, very blessed.
Last month, a woman in her late thirties hobbled slowly into the room and painfully lowered herself into her recliner. "Rough day?" one of the patients asked her. Nodding slowly, eyes filling with tears, she uncorked the last month of pain and suffering, sharing with the only people who can truly understand her frustration, discomfort, and at times, hopelessness. Not missing a beat, every single person in that room started offering suggestions, different pain meds that have worked for them, diet changes, specialist recommendations. She pulled a notebook out of her purse and started scribbling down the information that was flooding her way. She looked up and smiled for the first time since walking in the room. "Thank you all so much. I love coming here, because you all understand what this is like. It's like group therapy in this room!" We all laughed.
My infusion is tomorrow and I'm nursing swollen fingers, ankle, shoulder, and hip joints right now, taking tylenol to keep my fever down and thinking about who I will see tomorrow at my appointment. My infusion buddy Candace moved her appointment time so that she would start hers at the same time as me (she usually comes in at the tail end of mine). She has spondyloarthropathy (an autoimmune disease that affects the spine), is a preschool director at a local church, and has one son in the Navy and the other at Texas A&M. She has a Texas drawl and is always smiling and telling everyone she is a troublemaker (this woman has had more leaking issues with her IVs than anyone I've seen :) ). I'm looking forward to catching up with her.
Infusions have become more than just getting relief from the lupus symptoms that creep back in as the previous infusion wears off. It's a time to rest, sit, visit, and reflect on all that I do have in my life, the blessings, the small things I can be thankful for, and to be able to share, as opportunities come up and people ask, what He has done in my life. I walk away every month with a list of new prayer requests to pray for, to take my mind off of myself, and intercede on the behalf of others. And for me, that is the real therapy in that room.
