Finally my dressing was cleaned up yesterday. Its so nice to not have to feel faint and nausea every time I look at my left arm. The lovely office manager used to be a PICC line nurse, so she has been wonderful. A record fast dressing change this afternoon.
Its not that long of a drive to the office in New Port Beach. The traffic isn’t even that bad. The view is beautiful…the highway follows the coast all the way, so the views are spectacular. Ever few miles, we seem to hit a town center, but the rest is houses, tucked into planted lush oasis’. Elaborate sprinkler systems snake through tangles of exotic plants, bringing a welcome drink to the thirsty foreigners. I’m sure the local fancy cacti snub such plants, looking down on the vegetation that can’t survive without water from their masters, the gardeners.
Waiting in many doctors offices in states and provinces is the perfect opportunity to strike up a conversation with other patients who understand what you are going through. In the earlier days, we had many questions for the veterans of Chronic Lyme, trying to use as much of the hard-earned information as we can. I kind of consider myself a Lyme-life warrior, not yet home from the war, but battle-fatigued, in a Babesia-induced sweat, ready to bare my teeth again at the sign of another Herx, or some other fresh terror Lyme is ready to offer. I met a lovely young woman in the Synergy Health waiting room. She was from Windsor, Ontario, of all places, suffering from what was diagnosed as MS. Aiisha is her mid-twenties. We struck up a conversation, and instantly connected because I had had the CCSVI (and she was hoping to have it), we were both young and in a wheelchairs. Her speech and movement was shaky, and reminded my mum of how I sounded at my worst. After meeting so many people sick with Lyme disease, it becomes easier to spot people who could have Lyme disease. The way someone holds themselves, the lines in their face, tensions in their hands, a haggard look in their eyes, their story that begins with confusion and a long illness and many doctors visits until the MD’s pull a diagnosis out of the pocket of their white coats. I hope this procedure (CCSVI) helps her. Hopefully they can look into whether she has Lyme disease. Wouldn’t it be nice to have something treatable like Lyme, versus MS?
Shortly after leaving the doctors office, I noticed my arm was wet. There was yellowish fluid leaking out of the dressing (presumably from the site). It even got all over my new knitted armband!! If there could be anything worse than blood, it would be icky fluid (hmm…perhaps this is a close second). We tried calling the office, but, just as our luck would have it, they had just closed. After some debating, we went to the ER at a nearby hospital, where we waited for a long while, before getting a call from the clinic’s office, advising us to go home. I wasn’t looking forward to having a very expensive ER visit for a problem that could probably be fixed at the doctors office.
The dressing was just disgusting by this afternoon, but I wasn’t terribly worried. I mean, it was all covered up with a foamy wrap, putting pressure on the site. So I couldn’t see it, which to my very irrational brain meant everything was fine, fine enough to go to a used store in Laguna Beach and browse the racks. ‘Looking gross’ isn’t really a medical problem, and besides, I figured shopping would be a welcome distraction. I was just trying on some clothes when I became aware of the wetness of my arm. It was a very unnatural feeling, and when I removed my armband, I realized with a trill of terror that my arm was covered in blood. WHY does this sort of thing happen to me? It was all I could do not to scream right there in the crowded store. Paper-towels, rolling to the car, pressure on the site. It is difficult to breath or think when there is blood anywhere near me, least of all coming out of me, smelling of dirty pennies and heat.
We went back to the ER (did they miss me? clearly I was missing their company 😛 ) and had a doctor check out my arm. It is easier for me to remain rational in such a clean space as a hospital, surrounded by cleaning supplies, a pleasant distraction from the mess. It was strange, but the site of the incision, where I had the CCSVI procedure and then the PICC line inserted, was clean, and the blood was down my arm, caught in the gauze ring of my dressing. It was as though it leaked from no where. This is preposterous, but still, we couldn’t figure it out. So now I have a moderately sterile dressing on my arm, awaiting another dressing change tomorrow. Missing the beach right now.