Not the Post it was Supposed to Be

Posted by Nikki DiSalvo on

Well, this post was going to be about what it was like having a PICC line and being on IV Rocephin. But then life happened. Yesterday morning I started writing the post, but only got through the quick update part. I planned on writing the rest later in the evening, after picking my husband up from work (his car has been in the shop for almost a week, poor guy). So this is where I left off:

A quick update before I get into the bulk of this post; I've had a few really good days lately! It's been at least 2 months since I've had this many good days so close to one another. Basically what I mean by "good days" is that I almost feel like a normal healthy person. Not as many issues with lightheadedness, my heart not constantly running in overdrive, feeling like I'm actually getting enough oxygen, and most of my other symptoms lessened enough for me to forget about Lyme for a little while. I'm up to 19 drops of Banderol and Samento twice a day (I started at 5), and I'm hoping it's starting to work for me. I'm terrible at remembering to take medications, but I've been really good about taking it around the same time every day and not eating two hours before or half an hour after. Weirdly, the more drops that get added to the 4oz of water, the more it starts tasting like a little glass of milk. Not unpleasant, but peculiar.

Not to be pessimistic about feeling better, but there have been many times (before I was diagnosed) when I've had periods of general wellness followed by a sudden and strong crash. So I'm hopeful and grateful and all those happy things, but I'm not letting my guard down. I'm still not going to overdo it with too much strenuous activity and I'm going to allow myself to rest when I need to. That's a total paradigm shift from how I have treated myself in the past, but I'm committed to giving myself the best chance possible to kick this thing. But since it is the first time since I started treatment that I'm really noticing improvement it's hard not to let my imagination run away with thoughts of never getting worse again.


Apparently I spoke too soon. After picking my husband up we stopped at a friend's house for a little while. I was feeling okay, but I had a nagging pain in my right shoulder/upper back and my right hip. It felt like my back needed a really good cracking or something. But the longer we were there the more nauseous I became and by the end I was sweating like a mad man. We stopped at the store and I started feeling that flu-like feeling; my whole body was achy and sensitive and I just wanted to melt into a puddle of mush. When we got home my husband could tell I wasn't doing well and he suggested I go to bed. He didn't have to tell me twice. I made a cup of of a homeopathic-type Theraflu, washed my face, and gingerly crawled into bed.


Within minutes my strength was totally sapped. I was trying to have a text conversation with a friend and couldn't even think of words to write, I tried picking up my tea cup and it felt like it weighed 100 pounds. I couldn't lift it. My neck and back were in excruciating pain and tears just started silently streaming down my face. My husband came in after a few minutes and when he saw the tears he knew it was bad. I haven't had a serious episode like that since I started treatment in November. I had taken my temperature, but I definitely didn't have a fever. I had an anti-fever. My temperature wasn't even up to 97 degrees. But today I read that people with Lyme often have issues with low body temperature, apparently the bacteria thrives in cold bodies with low oxygen levels. Lovely.

I'm already blanking on some of the details of the night, but I promise it was horrendous. I really had to pee but I hardly had the strength to get my head off the pillow, let alone walk under my own power to the bathroom. My husband is a fucking saint. Seriously. Not only did he help get me out of bed, but walked behind me and held me up the whole way there while I whimpered and almost fell over at every step. It had to have taken at least two minutes to get me the 20 feet to our bathroom. He even pulled down my pants for me. I think I said I was embarrassed at that point (not sure why since he's seen me pee a million times) and he left the room. But he came right back when I was done, pulled my pants up, picked me up and carried me back to bed. Carried me. I'm not a really small girl, but he really is one dedicated and amazing husband. (Husband edit: The entire process from her saying she needed to get up to getting her back to bed took 20 minutes.  She is a small girl.)

I think the whole ordeal exhausted me because when I got back to bed I was convulsively shivering and couldn't breath very well. I was in so much pain. I wish I could describe it better, but it was like bone-deep pain everywhere with extra sharp pains migrating all over my body; the kind of pain that makes you feel like you're hallucinating. It felt like just having contact with the bed was painful. I was also really nauseous, so I was doing a lot of unhappy writhing (in place because I couldn't move my body much). So even though I was completely wiped out I couldn't sleep. I think I just moaned and sniffled and  a lot. I tried to watch Star Trek but my eyeballs couldn't focus. I would fall asleep for a couple hours and wake up either shaking with shivers or sweating my butt off.

Today I've felt better. Not good, but better. I can walk and pick up cups again, so that's something! The neck pain is pretty severe though and it's not super cool. I'm playing in a disc golf event on Sunday, so my plan is to take 'er easy through tomorrow and get all rejuvenated. It took me way too long just to write about this stuff that's relatively fresh in my mind, so the previously planned post will have to wait. It's going to take more brain power and stamina than I currently possess. But as soon as I'm able there will be a sparkly new post all about the fun of IV antibiotics, yay! Also exciting, there may be a guest post in the works. Always things to look forward to if you're on the lookout for them :)

Be Well,
Nikki