Chronic Lyme pt7 – The rules and other annoyances

The treatment itself wasn’t horrible. Once I figured out timing, it was pretty streamlined and easy. But the rules were constant trouble.

Don’t get the CVC entrance area wet. Any contaminated water getting inside the opening could cause a massive infection.

At this point in my life, I was engaged and was growing out my hair for the fall wedding. I have had short hair on and off all my life, even short “pixie” cuts, but I had a reason to have long hair at that time. Since the CVC was in my chest (rather than an easily wrapable arm) I had to take baths instead of showers. Never mind that I am not a fan of sitting in my own filth taking a bath normally. That also meant I couldn’t wash my own hair. It took two washings in the sink by my fiancée (who had shaved head for at least 10 years prior so had no idea how to wash long hair) to send me to the hair dresser for a super short ‘do. Sigh.

After a couple months, I found these gigantic waterproof bandages which were big enough to cover the whole area with my tube curled up inside. So showers were a go again (yay!), but cost me $4.50 apiece for the bandages.

Also, not getting my chest wet meant no swimming. No boating. No anything that had any chance that I might fall in the water or get splashed. I live in Maryland, surrounded by water. I love swimming as did my two young kids who were still too young to swim alone. No beach. No creek. No pools. Nothing.

Don’t lift/carry anything over 30 pounds. The strain on the chest muscles could dislodge the tube inside or the entry port area causing internal bleeding and/or possible infection.

My kids were 3 and 5 at this point in time. And before all else, I’m a mom. This meant I couldn’t sweep them up in a hug. This meant I couldn’t lift them to reach something. This meant I couldn’t carry them to bed when they fell asleep in the car or on the couch or in my arms. This meant I couldn’t pick them up for any reason, even to comfort them if they fell and got hurt. This was pure torture!

Truth be told, I broke this rule a few times. Luckily, I didn’t have any ruptures or dislodging. But that was a personal decision I made with my body and I don’t in any way downplay the risk or endorse or recommend following my example.

No strenuous activities affecting the upper body. Same reasoning as the last.

This combined with not lifting anything over 30 pounds also meant I was pretty much helpless. I like to be a fairly independent woman. I also like to help others when I can. I’m not notably strong, but what I can do myself, I will, willingly. But with this rule, I couldn’t do anything it seemed.

We moved into a new house. I could pack and unpack, some things. Light things. Small things. I couldn’t carry anything.

My best friend moved from 3 states away to take a job with my company. I couldn’t help.

Heavy groceries. Gardening (digging/pulling weeds). Shoveling snow (I didn’t mind that limit!). Luckily I have some very good friends and my fiancée was very understanding and willing. We had our moments…but extended time in a crappy situation and frustration will do that to anyone. If exercise was my thing, I imagine there would be limits there too.

Other annoyances: I had to wear sports bras or tank tops with a shelf built in 24 hours a day. During the day it was more convenience to keep the tube from wandering, but at night I was always so worried about rolling and having it caught somewhere and pull out.

The bandage covering the part going into my chest was pretty big. It would peek out from time to time if I wore anything lower than a crew neck shirt, which caught eyes, then stares as the looker was trying to figure out what it was, and occasionally then awkward questions. Really, how do you say “I saw something just above your boobs while I wasn’t looking at your boobs and was wondering what it is,” without sounding totally creepy.

I had to plan around my medications. Any trips I/we took were more complicated. The medication had to be kept cold, so coolers were a must. A long flight probably wouldn’t work (although I didn’t try that). Any hotel had to have a working fridge in the room. I had to plan around shipments so I’d have enough to take with me, and not have a shipment get delivered and sit on the porch for days. I had to take enough extra supplies, including my $4.50 shower bandages, to handle any contingencies. And I had to ensure I would be able to administer my medicine and change my bandage when needed.

How much all of the above wore on me and wore on my loved ones ebbed and flowed over time. There were annoyed fights. There were frustrated tears. There were times I wanted to rip the thing out of my chest and say screw it all. But none of it was anything I simply couldn’t abide. And so it went on.

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