May Part 3 – Sitting by the Phone


The night of my last entry, I had to hit my heart monitor button. As you already know, I have a very hard time showering. Dave has checked the water for me, and even set it so that it doesn’t get fully “hot”, as I cannot really feel if something is hot or cold. I was not in there for long, and instantly, I had a blackout feeling, and at that point I know I have just seconds before I hit the floor like a sack of potatoes.

I always keep my little remote nearby, and as I laid in a ball sopping wet and naked on the floor, I hit the button. It seemed to take forever to get enough strength to get up off the floor, dry off, get my pajamas on, and brush my hair. And then… it happened again. Damnit. This time at least wasn’t as bad, and I was able to get up to take my nighttime meds, and get to bed.

Two button hits in one night. A record for me. I decided that in the morning I would use my modem to send the full recording to the hospital, as they can only read a small portion of the “events”, until I send them the full recordings which show several minutes before and after.

I received a call the next day, and was told I need to have the full reports read by their specialist, but on the first event, my heart rate was over 150 and it showed that I had an arrhythmia of sorts. The hospital is going to get back to me with more detailed information, and wants to set up an appointment with my cardiologist. I’ll be interested in seeing what the results and interpretation of them are. As I know, the people that call can really not have much of a clue, so I am not holding my breath that this is going to give me any sort of answer to any of my issues.

The time has finally come to start up treatment again. I enjoyed the last bit of my time off, going out to dinner with Dave and having a movie night, worked a little extra as I never know how treatment will effect me, and got as much sun as I could. Natural vitamin D is always nice. πŸ™‚

With it being a beautiful day yesterday, I broke the rules of being on antibiotics, and sat out in the sun for about 20 minutes. As many of you know, while taking certain antibiotics, you should not spend time in the sun. One of my current antibiotics, Bactrim, is one of them. But hey, my 20 minutes out in the sun gave me some color, more so than someone who spent an hour or more out there. I know my limits, as a pasty white ghost, and try to never allow myself to spend enough time to burn if I can help it. Sunscreen is my friend. πŸ™‚

It has been months and months.. okay, years, of treating Babesia, and I have never had an issue with nausea. This time however, it is getting the best of me. It is one of those situations that you almost wish you could puke, or make yourself puke to get it over with, but you know it won’t really help. Instead, your mouth waters, you can feel that awful feeling in your throat that is heavy, the room is spinning a bit, and you just have a terrible feeling of being unwell. I spent the evening with a trashcan next to me, and tried to eat something heavy, which is my go-to (too bad I didn’t have some Chinese food πŸ˜‰ ) with no luck.

This is making me nervous for the end of the week, when I have to add Flagyl to my protocol, and if I am like this now, how am I going to feel at the end of the week? I am going to use the power of positivity, and try to believe that this will pass.

I have been going through treatment for over 2 1/2 years. I have been in what I feel is nothing short of hell. The loss of function, seizures, needing Dave to bathe me, needing a wheelchair, daily IVs for a huge chunk of treatment, the fogginess, the depersonalization, the pain. Not to mention my verbal and physical tics, that made my illness completely obvious to others, as I was ahem.. disruptive. You get the idea.

If I could peg two things that are the absolute worst, nausea is one of them. I HATE nausea. And I have found nothing other than eating junk has helped me. At least I have doctors orders to eat whatever I want if it helps me. How about that? Winning.

The other thing that is worst is the mental aspects of this disease. I can deal with pain for every day for the rest of my life, but when Bartonella wants to play games with me, I have this intense feeling of paranoia, feeling sorry for myself, reliving horrible memories, anxiety, and my mind goes to a very dark place. Losing your body is one thing, losing your mind is another, and it is really hard and powerful stuff.

Back to my story and away from my ramblings, I am taking it easy, and sleeping as much as possible. I am keeping my fingers crossed that I will hear back from the cardiologist’s office soon. I hate waiting for phone calls. Gah. Am I really sitting by the phone? No. But every single time I hear the phone ring I am hoping it is someone with some answers. I will keep you all posted!

Wishing you all a happy Monday!

2 thoughts on “May Part 3 – Sitting by the Phone

  1. Thank you so much for this blog. I have read it from the very beginning and have forwarded posts to friends and family because it’s really difficult for me to sum up certain things happening in my mind and body. Bartonella has messed with me BIG TIME and it’s been a rough road. I really appreciate you, Kim, and your dedication to these posts. They have been very helpful and informative.

    I wish you the best in your healing!

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