A few things have happened since my last post. The biggest of those is that my IV Central Line was removed! This alone has brightened my mood considerably; near the end every day with that line felt like it was creeping up into my throat and strangling me. I did my very best to be a champion and finish my meds as ordered but I slipped up a little along the way. The dread and fear that was starting to come with those meds was so strong in that last two weeks I can’t verbalize exactly how I felt, perhaps like I was about to drink poison and I knew it.
To get an idea what the last month has been like I suppose there are a few things that need to be considered beyond my near-complete aversion to my central line.
First, on the luckiest day – Friday the 13th of October. I had to meet Stephen (my husband) at the emergency room. He was lucky all things considered for someone who had a concrete grinding disk explode between his feet, but he did hobble away with a broken ankle, now with a plate and five pins surrounding it and a fracture on the other foot to top it off.
This was on Friday of week one of a two-week med cycle. I wasn’t feeling well; I was in pain and nauseous but that wasn’t the important thing at the moment. I stayed up in the ER until we were told Stephen would be flown out for surgery. This was his first surgery and I was insistent upon being there when he woke up. We strongly disagreed on this subject, and ultimately I wasn’t able to go – there wasn’t enough room on the airplane. This turned into a blessing in disguise though I still wish I’d have been there for him – I was in horrendous pain over the next 48 hours. I did try to go none the less, despite his attempts to say no, as well as both my granny’s, mom’s and sister-in-law’s attempts to persuade me to stay. I believe all they got in return was a hard “no” and a death-glare (sorry, guys!).
Fast forward to October 19th, it is the 500th (and last!) day with IV antibiotics. The decision to remove the line was my own. The time was already approaching now that I’d gotten back on track after a relapse earlier this year, ideally I would have waited until my November 1st appointment with my Lyme-doc to get the go-ahead but I knew it was time, so just four days after my last IV dose of antibiotics I was in our local hospital operating room. This was a happy day. I could see myself that my smile had changed; it was like knowing you’d be THISCLOSE to drowning but the tide was starting to finally move out.
In our lives, things just haven’t been simple these last few years – so why start now? In the OR I was given local anesthetic while the surgeon made small incisions, trying to detach the line but there was a lot of scar tissue over my collar bone. I’d been playing it cool the whole time but it didn’t feel great. With my experience being stabbed with tiny little needles for the tattoos covering my body, I’d sum it up to say it might have felt like having your collar bone tattooed, paired with the small tugs that needed to be made at the IV line. It was interesting to be awake, I got to ask questions and see the instruments he was using. The tool used to try to pull up on the line looked very much like the crochet hook I use on my dreadlocks. Yes, I know some of you are thinking “yuck” right now.
After a small pause to bring in the portable x-ray machine to check on things the surgeon told me we’d need to cut and yank a bit more aggressively, and wanted to bring in the anesthesiologist. I agreed, I’d done my part and taking a bit of a nap suited me just fine. I don’t remember anything else until being wheeled back to the pre-op room where Stephen was waiting with the Surgeon, who said “I know she will be disappointed”. I’m not sure where I was cognitively at that moment. I had no idea what room I was in or what time it was, but my eyes shot open and I said:
“you didn’t get it, did you?”
It turns out 504 days wasn’t the day to remove the line, but it was long enough for my body to get super comfy around that piece of purple plastic tubing. The line adhered to my vein (for all who are interested to better see what this looks like, I’ve included a series of photos at the bottom of this post). The surgeon was great and called to the next big city and spoke to a vascular surgeon and helped move the process along fast enough to get me in two days later as we had to travel back to Washington in only a few days.
The next day my sister-in-law and I tossed our bags into her car and we were off to Thunder Bay. There are times in my live where I’ve been acutely aware of my life being held in someone else’s hands. This was one of those times. I was edgy about this upcoming procedure; when I had the line placed I was nervous as all heck and filled with anxiety. This time was no different other than it translated into me being an emotional, irrational tornado. Trying to pack was a nightmare; I kept picking something up and leaving it somewhere else. I won’t even tell you about the hissy fit I pulled trying to find my jacket on my way out the door.
The next morning before heading into the operating room I met with the surgeon who was great and explained the procedure: a guide wire would be inserted into the IV line with a balloon attached to the end. The balloon would be inflated and deflated; this would help to free the line from the vein. It would be repeated a few times, using larger balloons as necessary until the line is free. Complications include vascular injury, which could require grafting; this is the part I didn’t want to hear about – the part that made me nervous.
My line was successfully removed, the surgeon said it put up a bit of a fight… but I was free. I’ve kept it as a reminder – of what exactly I’m not sure. I also have no idea what I’ll do with it, but for now it sits in a specimen container on a shelf in our bedroom.
Fast forwarding only a couple days we were heading back to DC to meet with my Lyme-Doc. I felt a bit uneasy about taking the line out without consulting with them first, but I also knew it was in long enough and had zero regrets about that choice. Neither did my doctor; I wasn’t chastised one single bit (not that I expected to be, but it was nice to know I had his support). We discussed my current symptoms, how I’d been doing off meds and while I was on them. When I was off meds the last two rounds I’d done fairly well over a span of 10 days or so. Not “well” like the old me, but it was a big improvement. I showed up 16 months earlier needing a wheelchair and had graduated well beyond that now (most days).
The long and short of my assessment was that I still have some damage or irritability of my brain stem, which isn’t overly surprising given how long I’d been sick before treatment (two years). The most pressing issue is that my spleen is still enlarged, this tells us that babesia is still not under control despite some of the subjective improvements I’ve had. To move forward I will be doing two babesia-direct med cycles, each two weeks on / two weeks off (I’ve written other posts about treating babesia, you can read them by clicking here).
There is something about treating babesia that not only triggers anxiety in me, but also old memories. I’ve had random thoughts of being a kid, playing at a friends on a slip and slide for hours. Memories that hold no significant value, but they just keep popping up.
It also brings on insomnia mixed with the deepest need and desire to sleep.
My brain is in rapid fire of thoughts and memories mixed with a sore throat and swollen glands so bad it hurts to turn my head. Muscle weakness and joint pain that has my wrists feeling like a nail has been driven though them and the pain is radiating into the smallest bones in my hands and up it’s tearing through the tendons in my arms.
My stomach. I don’t mean my actual stomach; I mean my entire torso. It’s tender and tight and after evening meds it is distended making it feel worse. I feel gas bubbling so intensely I’m sure you’d see the movement if you were watching my stomach (you know… like when a pregnant woman gets kicked by the baby as you actually see it).
All of this means there is no position that’s comfortable for sleep. Five hours later I’m laying here awake wondering what to do with myself, I’ve already exhausted Facebook, Instagram and Pinterest. It’s true. You can get bored of Pinterest (but now I want to make a hula hoop chandelier). My hands and wrists hurt so much more know, so I figure it’s best to try again to sleep.
After a few minutes of random thoughts that still won’t stop, I realize there’s a song playing over and over in my head. Michael Bolton?! How in the world did you find your way in here, Michael? I smirk to myself then shrug it off as those old memories coming back. My mom must have listened to Michael a lot, and then I think “at least it wasn’t meat loaf!”, as a kid I did not approve when my mom played the Meatloaf CD.
Next I find I’m drafting this post in my head… I always get the best ideas when I don’t have a computer to sit at. Ideally Siri writes for me cause my hands and wrists are screaming at me, wait a second…
♪ I would do anything for love, but I won’t do that ♪
Of course he’s here now too. I called upon him and now Meatloaf and Michael are dueling it out in the background of my thoughts.
So full summary:
Random memories and songs from 20-25 year ago
The balls of my feet ache
My calves spontaneously went into knots days ago and still are
Thighs are weak
It feels like there’s a huge chunk missing from my glutes – specifically my glut medius
My hip flexors are tight, tired and shaky
Everything from my pelvis to my ribs feels like it should be fit into a body at least 5 inches longer than mine
I can’t get a good breath, I’m not just talking air hunger – but deep breaths move my diaphragm down making even less space for my organs and guts
My hands, wrists and arms…. let’s not even go there
Of course if I listed things in their entirety you’d get bored of reading this or think I must be so sleep deprived I’ve gone off the deep end.
If I went off the deep end, with all the air trapped in my guts at least I have my own built in floatation device. It should keep my head above water.
I’ve already alluded to this in older posts, but some big steps are being taken. In less than four weeks I’m headed to Europe to move into a more holistic path of treatment.
To be continued…